Hospice and End of Life

CHAPTER

27 Hospice and End of Life Karen Mueller, Christopher Wilson, Richard Briggs

OUTLINE Introduction The Concept of a “Good Death” An Overview of Hospice and Palliative Care Hospice Versus Palliative Care The Evolution of Palliative Care and Hospice in the 21st Century The Physical Therapist’s Role in Hospice and Palliative Care Determining and Documenting Necessity of PT Services in HPC Acute Care Palliative Care Planning for Death with Dignity: Advanced Directives Advanced Care Planning Elements of the Advanced Directive 5 Wishes: A User-Friendly Advanced Directive Death With Dignity: PhysicianAssisted Death Hospice Care: Supporting Death with Dignity and Comfort The Medicare Hospice Benefit History of Hospice Care Growth of Programs and Services Profile of Hospice Patients

Diagnoses Length of Stay Hospice Outcomes The Hospice Interdisciplinary Model of Care Interdisciplinary Team Meetings Models of Physical Therapy Practice in Hospice and Palliative Care Rehabilitation Light Rehabilitation in Reverse Case Management Skilled Maintenance Supportive Care Clinical Issues—Considerations for Care The Role of Exercise Equipment and the Environment Comfort Care Measures Perspectives on Falls at End of Life Pain and Symptom Management Defining Pain at End of Life Prevalence of Pain at End of Life Types of Physical Pain Pharmacologic Measures for Pain Control

INTRODUCTION The Concept of a “Good Death” Health care outcomes, regardless of one’s discipline, are generally focused on the enhancement of patient quality of life. For each person, quality of life is a subjective, broad, and multifaceted construct, which includes all elements that provide life satisfaction. Physical therapists have a critical role in optimizing quality of life through the application of skills related to the evaluation and treatment of conditions affecting movement and function from the moment of birth until the moment of death. Nevertheless, because the typical expectation of physical therapy intervention is related to the attainment of improved function, the benefits of our services to those facing end of life are often not considered. To that end, patients in a hospice setting may be told that “nothing 612

Nonopioid Analgesics Opioid Analgesics Adjuvant Analgesics Medical Marijuana Palliative Sedation Ethical Framework for Palliative Sedation Initiating Palliative Sedation The Physiological Process of Dying The Dying Process Physiological Changes Associated with Death Nearing Death Awareness Cultural Issues With Acceptance of Death Confronting the Reality of Death Reframing Physical Loss and Dying Spiritual Awareness Dealing With Death and Dying Unfinished Business Summary References

more can be done” by health professionals who are unaware of the value of physical therapy in maintaining safe and comfortable function in the presence of physical decline. Unfortunately, such lack of awareness may prevent the optimization of quality of life in persons for whom death may be imminent yet whose life is still potent with opportunities for rich interactions. It does not have to be this way. The indignities of a lonely, painful, and helpless death are among the greatest fears of Americans.1 Fortunately, in the past few decades, these fears have forced a reexamination of end-of-life care, resulting in the development of the compassionate, patientcentered approach that defines hospice and palliative care. Central to the hospice approach is the construct of a “good death,” the inevitable outcome to which all effective end-of-life care is directed. This construct is the obvious antithesis of our worst fears. Simply put, a good death is one where the dying person is free of discomfort, in the

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CHAPTER 27 presence of those they love, and in the environment of their choosing. This patient-centered approach is certainly not a foreign concept in other areas of health care. For example, just as expectant mothers can orchestrate the manner in which their labor and delivery proceed, dying patients can be given similar options for the ways in which they affect their end of life. One of the most important contributions of hospice and palliative care is to assist patients in making and carrying out these choices. Physical therapists have an important role in supporting a good death through a host of interventions to reduce pain, optimize the patient’s remaining function, and enhance the quality of life for whatever time is left. In end-of-life care, physical therapy outcomes may not be solely functional but can include improved sleep quality, decreased physiological and psychological stress, improved respiratory function, and a decreased need for analgesic medication. More importantly, skilled physical therapy intervention can help the patient and family to maintain safe, energy-efficient mobility in the presence of declining systemic function, a process that can best be described as “rehabilitation in reverse.” A primary goal of this chapter is to examine the current structure and process of hospice and palliative care, a growing health setting for all Americans, particularly those in their later years. In addition, the roles, benefits, and outcomes of physical therapy intervention in the realms of hospice and end-of-life care will be explored. Most importantly, the information presented here should enable the reader to advocate for the ongoing involvement of physical therapists in this important area of care. Accordingly, because hospice and palliative care is a newer area of physical therapist practice, rich opportunities exist for engagement in outcome studies to support the value of these services. Finally, we should remember that participation in hospice and palliative care is an elegant reflection of the American Physical Therapy Association’s Vision Statement, which directs us to “Transform society by optimizing movement to improve the human experience for all people of all ages.”2 Given that the overall outcome of interventions in hospice and palliative care relates to a death with dignity, it is important to understand the physiological elements of the dying process. This knowledge is critical in providing compassionate support to patients and families as they navigate the poignant experience of this natural process.

AN OVERVIEW OF HOSPICE AND PALLIATIVE CARE

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that focus on the treatment of the chronically, but not terminally, ill. As discussed later in this chapter, hospice is a specific set of services that is covered by the Medicare hospice benefit. Patients admitted to hospice must meet certain requirements, including a physician-determined prognosis of less than 6 months to live and the acknowledgment that they are no longer seeking curative measures. In contrast, payment for palliative care services is not tied to a specific health care initiative such as Medicare; instead, services are reimbursed through the patient’s regular health insurance. Thus, payment for services must be in line with the range of covered benefits within each insurer’s plan. Regardless of the payment system or stage of the patient’s illness, a central theme in the management of serious disease is palliative-based interventions. For some patients, disease progression may result in admission to hospice. For others, effective palliative care may result in significant improvements, including cure. Accordingly, although all patients in hospice receive palliative care, not every patient who receives palliative care will do so in a hospice setting. The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”3 Palliative care programs also help patients to coordinate their care, to understand their condition, and to cope with related physical, emotional, and psychological distress. Payment for services rendered is the same as that for any other health-related treatment. In reality, the philosophy of palliative care is nothing new to physical therapists as it relates to preserving human dignity and maintaining an optimal quality of life whatever the circumstances. The profession’s long history of compassionately enhancing the quality of life for all patients is only one of the ways in which we are well positioned for important contributions in palliative care. In many communities, hospice and palliative care services are offered through the same facility. Reimbursement for palliative care services is administered through the patient’s primary medical insurance, enabling patients in palliative care to receive coverage for monthly visits from the hospice/palliative care nursing staff. Patients may remain on palliative services for months or years while seeking curative or supportive measures for their condition.

Hospice Versus Palliative Care

The Evolution of Palliative Care and Hospice in the 21st Century

In the realm of end-of-life care, two related terms, hospice and palliative care, are often used. Both terms pertain to the optimization of comfort and quality of life of patients with life-threatening conditions. Although hospice programs have delivered palliative care for more than 30 years, palliative care is also used in many other settings

Over the last several years the health care system has undergone a dramatic shift toward better health care management for individuals with chronic, life-threatening, or terminal illnesses specifically with the growth and proliferation of palliative care programs. Fig. 27.1 illustrates the rapid growth of such programs since 2000.

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Count of Hospitals with Palliative Care Program

Death

1,831 1,676

100%

1,714

1,544 1,595

80%

Treatment

Percent of Hospitals with Palliative Care Program

Aggressive medical care

Hospice care

1,357 1,150

60%

946

Time 658

40%

20% Death 2000 2002 2004 2006 2008 2010 2012 2014 2016

FIG. 27.1 The proliferation of palliative care programs in U.S. hospitals (with 50 or more beds) from 2000 to 2016. (From Center to Advance Palliative Care. Growth of Palliative Care in U.S. Hospitals 2016 Snapshot. Reprinted with permission.)

Palliative care is often perceived as a transition from active “curative” care to hospice care, but palliative care also includes patients with life-threatening illness who are not imminently dying but in physical decline who need holistic, patient-centered multidisciplinary support services.4 The Center to Advance Palliative Care describes palliative care as “specialized medical care for people with serious illness. It focuses on providing patients with relief from the symptoms, pain and stress of a serious illness whatever the diagnosis.”5 According to the Institute of Medicine, 60% of all health care costs in the United States were attributed to only 5% of patients—those with serious illness.6 Of this small but costly group of patients, 11% were in the last year of their life, and 89% will remain alive for longer than a year.6 This highlights the need for comprehensive, focused care for those with serious illness to help contain health care costs and optimize remaining quality of life (QOL). Within this health care paradigm, physical therapists can demonstrate their value by keeping these individuals safe at home and in their community by optimizing health, preventing falls, providing for safe discharge, and reducing unwarranted hospital readmissions. Fig. 27.2 illustrates the change in models of palliative care to hospice toward a trajectory model. Providing physical therapy care to patients who are not expected to demonstrate functional recovery is a recent phenomenon in the United States, perhaps owing to insurance regulations requiring documented gains—commonly termed the “improvement standard.” In 2013, a number of seriously ill individuals initiated a class action lawsuit to challenge standards of access to medical services including physical therapy in the United States. The Jimmo v. Sebelius settlement in the U.S. federal court establishes that the Centers for Medicare and Medicaid Services (CMS) must reimburse for skilled services (including

Treatment

Disease modifying, “curative”

Symptom management, “palliative”

Time

Family Bereavement

FIG. 27.2 The older “transition” model of care versus a “trajectory” model of palliative and hospice. (From Lynn J, Adamson DM. Living Well at the End of Life. White Paper. Santa Monica, CA: Rand Corporation; 2003. Reprinted with permission.)

physical therapy) if the services are medically necessary to maintain or slow the decline of function during a serious or life-threatening illness even if there is not the expectation of physical or functional improvement.7 This settlement does not differentiate between different payment methodologies for Medicare and would include both Medicare part A and Medicare part B payment services for physical therapy. Once a patient with a lifethreatening illness enrolls in the Medicare hospice benefit, the payment structure does shift toward a per diem model where a hospice organization receives a certain dollar amount per day for all services. In this hospice payment model, physical therapy availability may be more restricted owing to financial limitations and the patient’s advanced disease process. Although the Jimmo v. Sebelius settlement agreement pertains to the United States’ CMS, it is an important factor for other private insurances or agencies to consider when determining which services to cover or provide during the care of the individual with a life-threatening illness. Clinical Scenario. Elaine was a 54-year-old woman with a 2-year history of cervical cancer. During this time, Elaine had received three courses of chemotherapy with good results. Elaine sought palliative care services through her local hospital system for the purpose of expert pain management. She received monthly visits from the

CHAPTER 27 palliative care nurse, who assisted Elaine in determining appropriate pharmacologic measures for pain control. Elaine’s medications were covered by her primary insurance. In the meantime, Elaine underwent an additional course of chemotherapy, and this episode left her considerably weaker than prior courses. As a result, Elaine was unable to engage in her aerobics classes at her local gym. A physical therapy consult was requested to assist Elaine in developing an exercise and wellness prescription. During the consult, the physical therapist worked with Elaine to develop a slowly progressive walking program, using a pedometer to measure her progress. Elaine remained on palliative services for an additional 8 months, whereupon her physician determined that further curative measures were unlikely to be successful. Elaine transferred to hospice and received services for another 2 months before her death.

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with more traditional underserved regions or areas such as rural or low-income areas having decreased access to consistent HPC services. In these areas limited HPC services may be compounded with inconsistent access to physical therapy (PT) services within HPC.8 Other health professionals may be unaware of the value of physical therapy in maintaining safe and comfortable function in the presence of physical decline. This lack of access to physical therapy may prevent the optimization of the remaining part of life and its rich interactions. The American Physical Therapy Association’s (APTA) House of Delegates has endorsed and clarified the physical therapist’s role in HPC through a motion passed in 2011 (RC 17-11)9 that included concepts related to continuity of care, appropriate and adequate access to PT services, the importance of an interdisciplinary approach, and education of PTs, physical therapist assistants (PTAs), and students in HPC, as well as pursuing appropriate and comparable coverage and payment. Fig. 27.3 depicts a conceptual framework that represents the roles of physical therapy in various aspects of hospice and palliative care. The conceptual framework was developed after qualitative interviews with experienced

The Physical Therapist’s Role in Hospice and Palliative Care In the United States and globally, there remains inconsistent access to hospice and palliative care (HPC) services,

PHYSICAL THERAPY ROLES IN HOSPICE/PALLIATIVE CARE INTERDISCIPLINARY TEAM • Consultation • Education

PATIENT/FAMILY MANAGEMENT • Patient Management • Family/Caregiver Support

PROFESSIONAL RESPONSIBILITIES • Education • Advocacy • Scholarship

• Patient/Family Advocacy

SHIFTING PRIORITIES ACROSS THE CONTINUUM OF CARE Initial Diagnosis

Management Philosophy Treatment Emphasis Expected Outcomes Patient Status

Rehabilitation

Palliative/Supportive

Patient Family/Interdisciplinary Team Function Comfort/Quality of Life Good Death More Stable More Complex/Variable

End of Life

INFLUENTIAL FACTORS OUTSIDE OF DIRECT PATIENT CARE Physical Therapist

Community

Government

Knowledge, skills, values, perceptions, access to mentors

Support; Local/national culture, religion, ethnicity

Legislation, regulations, health care system, economics

Professional Associations

Payment and Finances

Health Care Institutions

Patient and Family

Values, goals, scholarship, perceptions

Insurance, resource limitations

Policies and structure

Culture, religion, ethnicity

FIG. 27.3 Conceptual framework for physical therapist involvement in hospice and palliative care. (From Wilson CM, Stiller CH, Doherty DJ, Thompson KA. The role of physical therapists within hospice and palliative care in the United States and Canada. Am J Hospice Palliative Med. 2017 Feb;34[1]:34–41. Reprinted with permission.)

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HPC physical therapists in the United States and Canada.10 Within the large oval is the physical therapist’s role as it relates to hospice and palliative care. At the top of the oval are the PT’s roles within hospice and palliative care that are present at all times in the management of a patient with a late-stage chronic disease or life-limiting illness (patient and family management, the PT’s role as an interdisciplinary team member, and professional responsibilities). The large bidirectional arrow represents care concepts related to shifting patient care priorities across the continuum as the patient advances through his or her disease trajectory from initial diagnosis through death. These shifting priorities may include the PT’s patient management philosophy, the shift in emphasis in treatment and expected outcomes, and anticipating shifting patient status from more stable to more complex and variable. For example, a patient with a degenerative condition such as multiple sclerosis may have frequent and dramatic fluctuations in function between periods of stability with associated varying needs for physical therapy. The small double-sided dashed arrows represent shifting priorities—double-sided because individuals/therapists can go back and forth between the two extremes and dashed because there may be some cases where therapy is interrupted because of medical issues, patient and family preference, financial issues, or other external factors. Below the oval that outlined the PT’s role in HPC is a large rectangle that describes factors that influence the physical therapist’s HPC management beyond direct patient care. Factors include influences inherent to an individual physical therapist including his or her comfort level with end-of-life care, patient access, and knowledge of HPC care philosophy. Additional factors are the community and government, payment and finances, physical therapists’ professional association, and perceptions and infrastructure of individual health care institutions. Finally, the patient and family circumstances were influential factors on physical therapy outside of direct patient care, including willingness and ability to participate in rehabilitation, acceptance of the patient’s current disease state and trajectory, and the emotional resources of the patient and family to participate in rehabilitation during this difficult time. For example, several physical therapists noted that financial barriers, governmental regulations, or institutional structure was not always conducive to performing their role within hospice or palliative care, and physical therapists need to advocate for their services or establish strategic alliances to integrate physical therapy services into currently existing or newly developing hospice or palliative care programs.10

Determining and Documenting Necessity of PT Services in HPC As noted earlier, the Jimmo v. Sebelius settlement further clarified that a patient or client is still eligible to receive

skilled services even if there is no clear potential for physical or functional improvement. The patient/client would also be eligible when skilled physical therapy services are required to maintain the patient’s current status or slow the decline of the patient’s condition. It is anticipated that additional insurance payers may consider adopting this payment methodology. A key concept of this methodology is that these services must require the skills of a licensed PT or PTA and the provider’s clinical documentation must reflect the need for the services and why these services cannot be safely or appropriately performed by a different provider (such as nursing, massage therapist, etc.) or by volunteers or family caregivers. Fig. 27.4 outlines key clinical decision-making points to assist therapists to determine if their individual patient situation would be appropriate for skilled physical therapist services. If the clinical documentation does not clearly establish these key tenets on a regular basis, the physical therapy services are at a higher risk of rejection for payment or additional audits by insurance companies. As most rehabilitation professionals focus their clinical documentation on demonstrating progress with impairments or improvements in functional limitations, this patient population may demonstrate some confounding factors to conventional clinical documentation. If a therapist only reports objective measures such as range of motion, strength, or functional mobility status and these measures do not demonstrate improvement, it may increase the likelihood of insurance nonpayment or audit. Therefore, it is imperative that HPC PTs and PTAs also quantify contextual factors as well as patient-reported QOL. Even if a patient’s range of motion, strength, or gait distance worsens, if the therapist is able to demonstrate that the skilled services have improved or maintained QOL, even in the presence of an advancing disease process, then payment denials are less likely. There are a number of widely utilized, valid, reliable patient-reported QOL outcome measures that can be accessed at www.facit.org including the Functional Assessment of Cancer Therapy—General (FACT-G) and the Functional Assessment of Chronic Illness Therapy— Fatigue (FACIT-F). Table 27.1 provides some clinical documentation examples to justify physical therapy services for a variety of palliative or hospice scenarios.

Acute Care Palliative Care Within palliative care, there are two main locales where programs are generally being developed: hospital-based acute care and postacute care. Postacute care may include locations such as home care services, skilled nursing facilities, transitional care units, long-term acute care hospitals, inpatient rehabilitation units, and some outpatient facilities.11 In addition to patient-centered outcome measures including improvement in QOL, maintenance of high level of functioning (as able), and optimal symptom management, key outcomes for these organizations include reducing unwarranted readmissions into the hospital, falls

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617

With proper physical therapist instruction, could the patient or a caregiver safely provide the same or similar care? (i.e. simple transfers, range of motion, or exercise programs)

Answer is NO or UNSURE

Answer is YES

Without SKILLED physical therapist services: The physical therapist may consider initiating an exercise or activity prescription to be implemented with periodic reevaluation

Answer is NO to all questions

•

Would the patient’s condition worsen at an expedited rate?

•

Would the patient’s safety or remaining quality of life suffer?

•

Would the patient be at increased risk of needing more intensive services, hospitalization, or institutionalization without physical therapy?

•

Would the patient’s pain or symptoms be as adequately controlled with their current medication regimen?

•

Would the patient benefit from acquiring skills or knowledge of issues that he/she will be experiencing in the future based on the disease trajectory?

Answer is YES to one of these questions and the patient wishes to actively participate in physical therapy

This patient may be a candidate for skilled physical therapist services even if progress or improvement is not expected

FIG. 27.4 Considerations for determining medical necessity for physical therapy. (From Wilson CM, Boright L. Documenting medical necessity for palliative care and degenerative or chronic conditions. Rehabil Oncol. 2017 Jul 1;35[3]:153–156. Reprinted with permission.)

(especially injurious falls), and avoiding unwarranted diagnostic testing or surgical procedures that do not improve the patient’s quality of remaining life or disease trajectory. A key component of this transition from acute to postacute care is clear handoff communication and integrated services between acute care and the postacute setting—all services that acute care physical therapists are equipped to assist with. A study by Wilson and Roy12 examined the overlap between acute care palliative consultations and physical therapy consultations and demonstrated that for 963 palliative care consultations, physical therapists were consulted 83% of the time during that hospital admission, indicating that there is a significant role for physical

therapists with the acute palliative population. In addition, it was noted that physical therapy was ordered before palliative care 70% of the time, which may indicate that attending physicians may be utilizing physical therapy as a part of the decision-making process as to whether to initiate palliative care services or not. For example, if a patient is participating in PT during a hospitalization and is not demonstrating improvement, it provides further evidence that palliative care may be necessary. In the hospital setting, many health care systems have begun to hire palliative care midlevel providers such as specialty-trained nurse practitioners or physician assistants. Key roles for these midlevel providers, working under the

618

TABLE 27.1

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Examples of Documentation That Justify Need for Physical Therapist Services in Hospice and Palliative Care

Clinical Scenario/ Patient Description

Interventions Performed or Objective Findings

Maintenance of a status that is anticipated to decline without skilled PT 47 y.o. female with progressive multiple sclerosis Ensuring safety via skilled PT services 74 y.o. male with stage 4 lung CA with bone metastasis to femurs Anticipating future decline 63 y.o. male with amyotrophic lateral sclerosis

Assessment or Evaluation

Expected Outcomes or Goal Setting

The patient was able to perform her lower extremity exercises at the same resistance and dosage despite documented disease progression.

Without PT services, it is expected that the patient’s lower extremity strength status would worsen over the next 2 to 3 weeks.

The patient’s bilateral quadriceps strength will remain 4/5 as opposed to declining to 3+/5 as would be expected without skilled PT intervention.

Patient requires continuous monitoring and manual or verbal cueing from PTA during gait training with standard walker to maintain non– weight bearing due to femoral bone metastases. Patient was able to tolerate gait training with standby assistance with standard cane for 100 feet. The patient was instructed in the use of two-wheeled walker in anticipation of functional status declining as a result of disease trajectory.

Patient requires continued skilled physical therapy services to maintain safety with functional transfers/mobility in preparation for home discharge on hospice. In addition to interventions to address current clinical deficits, the patient would benefit from preparatory training in use of rolling walker and wheelchair, to promote continued safe home mobility through anticipated progressive decline in lower extremity strength (functional endurance) expected as a result of chronic disease process. Patient does require continued skilled physical therapy services but will likely need frequent rest breaks and decreased intensity of interventions to optimize comfort and physical outcomes. As the patient’s functional status and strength are declining, the PT will focus on optimizing remaining quality of life and safe, comfortable, active participation in life events as quantified by FACT-G questionnaire. Patient demonstrates ability to effectively manage pain through positioning and exercise techniques.

The patient will be able to ambulate with standard walker with caregiver or therapist assistance to protect the restricted weight-bearing status. The patient will demonstrate the ability to transfer and ambulate safely with the two-wheeled walker to safely perform functional activities as the disease process progresses.

Slower progress or decreased tolerance anticipated 79 y.o. female with COPD

X, Y, and Z interventions had planned to be implemented but were modified (or held) on this date owing to decreased endurance and tolerance.

Emphasizing quality of life 89 y.o. female with Alzheimer dementia and Parkinson disease

Although subacute rehab was recommended after discharge by care team, patient and family prefer to d/c home. Caregiver training was completed for safe home mobility in anticipation of home discharge.

Nonopioid pain management 64 y.o. male with stage IV lung CA with spinal metastasis

Patient’s pain reports remained less than 4/10 on visual analog scale throughout exercise session with a reported decreased need for prescription pain medications prior to therapy.

Patient’s Timed Up and Go test time will only increase by 5 seconds as opposed to improving by 10 or more seconds as would be expected without the patient’s COPD. The patient’s FACT-G QoL score will increase to 65 even though objective physical measures are expected to decline.

Patient will be independent in home pain management techniques as evidenced by decreased need for oral opioid use.

CA, cancer; COPD, chronic obstructive pulmonary disorder; d/c, discharge; FACT-G, Functional Assessment of Cancer Treatment: General (www.facit.org); PT, physical therapist; PTA, physical therapist assistant; QoL, quality of life; y.o., year old. (From Wilson CM, Boright L. Documenting medical necessity for palliative care and degenerative or chronic conditions. Rehabil Oncol. 2017 Jul 1;35[3]:153–156. Reprinted with permission.)

supervision of a physician leader trained in palliative care, are to discuss the patient’s goals of care, advance directives, and transition to next level of care. Hospitals have begun to convene formal or informal palliative care interdisciplinary rounds within the hospital. These are often attended

by physicians, palliative care midlevel providers, social workers, chaplains/pastoral care professionals, rehabilitation professionals (such as physical therapists), and representatives from postacute care settings. Within these interdisciplinary team meetings, physical therapists should

CHAPTER 27 report on the patient’s current or anticipated functional capabilities and deficits, provide input on safe discharge planning and fall prevention, and assist with procurement of durable medical equipment that the patient may need as their functional status changes.13 It may not be feasible for every physical therapist within the hospital setting who works with a palliative care patient to attend these rounds. Best practice may be if one key physical therapist attends and serves as the conduit for communicating information to and from the rest of the care team with his or her physical therapist colleagues. An example of best-practice interdisciplinary communication would be if a treating physical therapist noted that the patient’s functional status was declining despite continued participation in physical therapy. This information would be important to communicate to the palliative care team. The treating physical therapist would communicate this information to the PT who attends palliative care rounds to convey to the rest of the interdisciplinary team. After the meeting was completed, the PT who attended the rounds updates the treating physical therapist as to the status of the patient, and the outcome and recommendations from the interdisciplinary care team. Because a goal of interdisciplinary hospice and palliative care rounds is to improve the communication and continuity of care, there may be opportunities for postacute physical therapists to either attend via telecommunications or convey information to their representative who attends the rounds regarding steps that may be taken to avoid unwarranted readmission to keep the patient safe and active in his or her home.14

PLANNING FOR DEATH WITH DIGNITY: ADVANCED DIRECTIVES Advanced Care Planning As autonomous human beings, we desire the ability to identify, plan, and execute important elements of our lives. Planning is a central process by which we direct our lives in concert with our values and preferences. The vast majority of human activities, particularly those involving health care interactions, require the cooperation of others. Thus, the ability to communicate values and preferences surrounding health care choices is central in patient satisfaction and quality of life. The end of life is no exception. Planning for the type of care we want at this juncture can help ensure a death with dignity and comfort in the setting of our choice. More importantly, in situations where we are no longer able to convey our preferences, a clear plan for the type of health care we desire assures our family and loved ones that they are supporting us in concert with our wishes. Advanced care planning (ACP) involves making decisions, identifying strategies, and enlisting the support of family members and health professionals to ensure medical care that is congruent with personal values and preferences.15

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Health care preferences at end of life are typically conveyed through a document known as an advanced directive. An advanced directive enables a person to identify a trusted individual to convey the individual’s preferences for medical care in the event that the individual is no longer able to do so. This document also enables a person to select options for life-sustaining care. Ideally, an advanced directive is completed before circumstances require it. The absence of an advanced directive can have a devastating impact for family members, particularly if they disagree about the best course of action. Such disagreement was illustrated in the 2005 case of Terri Schiavo, a young woman living in a persistent vegetative state for 15 years following a cardiac arrest.16 Schiavo was incapable of purposeful interaction and required a feeding tube to sustain her nutrition; however, she was able to breathe independently. She had been in a persistent vegetative state for 8 years when her husband petitioned the Sixth Circuit Court of Florida to remove her feeding tube, stating that Schiavo would have never wanted to live in her current condition. However, her parents, both devout Catholics, disagreed, stating that removal of the feeding tube was tantamount to murder. Unfortunately, Schiavo had not completed an advanced directive and her family members were unable to agree on a course of action. A nationally prominent court battle ensued over the next 7 years before the feeding tube was removed. Schiavo died on March 31, 2005.16 In spite of the publicity around the Schiavo case, the use of advanced directives remains limited. In one study, only half of persons aged 60 or older reported the completion of these documents.17 Even in the case of serious illness, the issue of advanced directives may be ignored. Another study found that only 27% of patients with advanced cancer had discussed advanced directives with their oncologist and only 13% had discussed palliative care with any physician.18 Even when advanced directives are in place, health care professionals may not have access to these, resulting in the use of unwanted interventions. As a result of these missteps, ACP has gained increased recognition as a health care intervention intended to reduce unwanted care at the end of life. As of January 1, 2016, the CMS has reimbursed physicians and other health professionals for ACP conversations with patients as part of the annual wellness visit.19 The outcomes of these discussions will be documented in the patient’s medical record so that all providers are informed of the patient’s end-of-life preferences. Evidence supports the value of ACP in promoting better patient outcomes at end of life, including decreased use of inappropriate care, lower health care costs, and better physician adherence to patient wishes.20 Physical therapists should be prepared to engage in ACP discussions, many of which may arise in the context of discharge planning, identifying equipment needs in the face of decline, or referring a patient for a palliative care consult.21 When addressing ACP during a clinical encounter, a broad, open-ended question will invite the

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patient to explore a wide range of possibilities that can be further explored. For example, when working with a patient who is declining rapidly from amyotrophic lateral sclerosis (ALS), the physical therapist might inquire, “What future support might you need to have the best quality of life with your disease?” A follow-up question such as “How have you conveyed these desires?” can lead to a discussion on the value of ACP in ensuring that such needs are met. Any elements of an ACP-related discussion should be documented to facilitate communication between other providers.

Elements of the Advanced Directive Advanced care plan (ACP) documents allow individuals to identify their preferences for care in the event that they are no longer able to speak for themselves. There are two types of ACP documents, each with a distinct purpose and intended audience, explained in detail next. Healthy individuals over the age of 18 are encouraged to complete a DPAHC and living will as a general indication of their preferences for future care. In contrast, a DNR or MOLST is typically completed when an individual is terminally ill and facing the possibility of imminent death. Accordingly, the MOLST enables a terminally ill person to explicitly identify the extent and nature of life-sustaining interventions, which range from comfort care only to hospitalization and full resuscitation. Although a DNR and/or MOLST are not required as a condition for admission to hospice and palliative care programs, patients are encouraged to complete these to prevent unwanted aggressive treatment such as cardiac resuscitation. Durable power of attorney is the appointment of a trusted individual aged 18 years or older (typically a family member or close friend) to make decisions on one’s behalf (act as a surrogate) when a person is no longer able to do so him- or herself. A DPAHC can be granted for decisions related to financial matters, mental health care, and general health care. The DPAHC is a written document, which, depending on the person’s state of residence, becomes a legal document when signed by the patient (also known as “grantor”) in the presence of a witness. Notarization is required in some states. The extent of DPAHC responsibilities typically involve coordinating care with health care providers and family members to ensure that the grantor’s preferences are honored. Many of the challenges around end-of-life care involve the execution of patient desires involving the refusal, initiation, or withdrawal of life-sustaining treatments such as ventilators, enteral feeding (“feeding tubes”), and cardiac resuscitation. Refusal or withdrawal of such measures inevitably leads to death, and some health care providers may be reluctant to execute these measures. Thus, patients should engage family members and health care team members in the process of ACP. These discussions support the patient as well as the providers who carry out the patient’s requests.

A living will identifies the patient’s specific requests for the type of health care desired in the event of a serious illness. The living will can even be broadened to include special provisions for pregnant women to determine the extent of life-saving measures for their unborn offspring. Some living wills are integrated into the DPAHC document, and others are stand-alone documents. In either case, family members and health care providers should all receive copies of these documents and their contents should be thoroughly discussed with family and health care providers. Documentation of the patient’s advanced directive should also be noted in the medical record. A DNR is a document that clearly specifies the patient’s refusal for cardiac resuscitation in the event of a lifethreatening event. Most persons do not complete a DNR as part of their advanced directive until a serious terminal illness raises QOL issues. Although a DNR is not required as a condition of hospice admission, the topic typically arises in patient discussions about care options. For patients receiving in-home hospice care, the DNR is typically printed on orange paper and prominently placed in clear sight (often on the kitchen refrigerator door). Enacting a DNR can be a difficult decision for family members or health providers who are present when a person shows clear signs of imminent death, however, hospice personnel are highly skilled in providing support and other interventions to allow a peaceful and comfortable death. Moreover, patients who cannot provide evidence of their enacted DNR may receive unwanted resuscitation with potentially devastating consequences such as brain anoxia or chest/rib trauma. DNR orders are not typically signed by the patient’s physician, which may contribute to inconsistent follow-through if the patient is admitted to a hospital. The reasons for this are varied and include a lack of visible DNR documentation and disagreements between family members that result in a 911 call. In such cases, the medical response team is required to institute aggressive life support measures that include CPR or electrocardioversion. For persons with serious, life-limiting medical conditions or advanced frailty, there are 2 advanced care documents which fall under the category of medical orders. The first is the Do Not Resuscitate (DNR) order which addresses the use of cardiac resuscitation. The other document is the POLST (physician orders for life sustaining treatment,) or MOLST (medical orders for life sustaining treatment). The purpose of these documents is to direct emergency personnel to provide specific interventions (such as cardiac resuscitation as well as medically assisted nutrition, hydration or ventilation) in a medical emergency. These documents are medical orders which are signed by the appropriate health professional after a conversation with the patient in which treatment options are agreed upon. Although signature requirements for a valid POLST form vary by state, these health professionals typically include physicians, advanced practice registered nurses and physician assistant. Completion of the

CHAPTER 27 TABLE 27.2

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Comparison of Advanced Directives and Physician Orders for Life-Sustaining Treatment (POLST) Documents

Type of document Who completes the document What document communicates Can this document appoint a surrogate decision maker? Surrogate decision maker role Can emergency personnel follow this document? Ease in locating/portability

Periodic review

Hospice and End of Life

POLST Paradigm Form

Advance Directive

Medical order Health care professional (which health care professional can sign varies by state) Specific medical orders No

Legal document All competent adults

Can engage in discussion and update or void form if patient lacks capacity Yes Patient has original and a copy is in patient’s medical record; a copy may be in a state registry (if state has one) Health care professional responsible for reviewing with patient or surrogate

General treatment wishes Yes Cannot complete No No set location; individuals must make sure surrogates have most recent version Patient is responsible for periodically reviewing

(Comparison of Advanced Directives and POLST Documents. Used with permission from the National POLST Paradigm. Available at http://www.POLST.org.)

POLST form is strictly voluntary. The National Hospice and Palliative Care Organization provides information about ACP on its website and also provides access to state-specific forms.24 Advanced directives and POLST documents are similar in that they are both intended to allow individuals to identify their individual preferences for care in the event of incapacitation due to serious illness or injury. However, they have distinct differences as shown in Table 27.2.

5 Wishes: A User-Friendly Advanced Directive In 1996, attorney Jim Towey founded Aging with Dignity after his experiences at Mother Teresa’s homes for the dying inspired him to promote better care for people facing the end of life. He developed a user-friendly advanced directive known as 5 Wishes, which uses simple language and an interactive written format to facilitate the appointment of a DPAHC, the type of care desired, and the type of emotional, physical, and spiritual support desired.25 The 5 Wishes program is used in all 50 states and meets the requirements for a legal advanced directive in 42 states (in the other states, 5 Wishes can be made legal through the process of notarization). Thus far, 5 Wishes has become one of the most popular forms of advanced directive, with 25 million persons having used this document.25

Death with Dignity: PhysicianAssisted Death Physician-assisted death allows mentally competent patients with a terminally ill condition to request and

receive a prescription medication to hasten their imminent and inevitable death. As of 2018, seven states (California, Colorado, District of Columbia, Hawaii, Oregon, Vermont, and Washington) have enacted death with dignity laws, which permit physician-assisted death.26 Although the intent of physician-assisted dying is to ensure complete patient autonomy in the decision to die with peace and comfort at the time and place of their choosing, the practice has raised ethical concerns that patients may choose this instead of seeking appropriate palliative care. Accordingly, a recent position paper from International Association for Hospice and Palliative Care has asserted that no country or state should consider the legalization of physicianassisted death until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea. The position paper further states that palliative care units should not be responsible for involvement in these practices.27

HOSPICE CARE: SUPPORTING DEATH WITH DIGNITY AND COMFORT The Medicare Hospice Benefit The Medicare hospice benefit was enacted by Congress in 1982 and since that time has been the major source of payment for U.S. hospice services. In 2016, Medicare provided services for 48% of all patients served.28 To qualify for hospice, both the hospice physician and the patient’s primary care provider must certify the presence of a terminal condition with a prognosis of <6 months. In addition, patients must certify that they are willing to accept comfort-based care and are no longer seeking

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curative measures for their condition. Finally, patients must be entitled to Medicare Part A services (inpatient). Patients who elect the Medicare hospice benefit begin with two initial 90-day periods, which can then be followed by unlimited 60-day periods as long as documentation shows the continued need and appropriateness for services. Patients may revoke their hospice benefit if they decide to pursue curative measures.29 Medicare requires that all core services (nursing, physician, psychological, and spiritual support) be available on a 24-hour basis to ensure support and comfort whenever needed. The levels of service and types of care covered under the Medicare hospice benefit are illustrated in Boxes 27.1 and 27.2.

History of Hospice Care The term hospice derives from the Latin term hospitum, which originally described a place of shelter for sick and

BOX 27.1 • • • • • • • • • • • • • •

Specific Services Covered by Medicare Hospice Benefit

Physician services* Nursing care* Medical equipment (like wheelchairs or walkers) Medical supplies (like bandages and catheters) Prescription drugs Hospice aide and homemaker services Physical and occupational therapy Speech–language pathology services Social worker services* Dietary counseling* Grief and loss counseling for patient and family* Short-term inpatient care (for pain and symptom management) Short-term respite care Any other Medicare-covered services needed to manage the terminal illness and related conditions, as recommended by the hospice team

* Denotes core service required for Medicare reimbursement.

BOX 27.2

Levels of Care Provided by Hospice Benefit

Home-Based Care 1. Routine home care: Patient receives hospice care at the place he or she resides. 2. Continuous home care: Patient receives hospice care consisting predominantly of nursing care on a continuous basis at home. Continuous home care is only furnished during brief periods of crisis and only as necessary to maintain the terminally ill patient at home. Inpatient Care 1. General inpatient care: Patient receives general inpatient care in an inpatient facility for pain control or acute or chronic symptom management that cannot be managed in other settings. 2. Inpatient respite care: Patient receives care in an approved facility on a short-term basis to provide respite for the caregiver.

weary travelers. Nirmal Hriday (Pure Heart), one of the first known homes for the dying, was established in 1952 by Mother Teresa in Calcutta, India.29,30 Working in the most destitute slums of Calcutta, she and her sister nuns took indigents who were dying off the streets to nurse them at this home, enabling “persons who lived like animals to die like angels, loved and wanted.”30 This noble work continues today in more than 500 worldwide centers. Dame Cicely Saunders, MD (1918–2005), is recognized as the founder of the modern hospice movement. As a nurse working at an English cancer hospital after World War II, she was disturbed by the pain and isolation she witnessed among dying patients. These observations compelled her to enter St. Thomas’s Medical School in 1951 at the age of 33, qualifying as a physician in 1957. Following the completion of her medical studies, Saunders sought additional training in pharmacology, when she explored the effective use of analgesic medications for the treatment of pain at end of life. In an environment where medication underutilization was common because of fears of addiction, she challenged rationales that were grounded mainly in conjecture. Accordingly, instead of requiring patients to wait until their pain medications wore off before requesting another dose, Saunders advocated medicating at a level to produce continual analgesia and wrote several papers that described and provided support for her approach. Furthermore, instead of the sterile and lonely hospital rooms where she had worked as a young nurse, Saunders proposed treating dying patients in a warm and comfortable setting with a home-like atmosphere. In 1967, Saunders opened St. Christopher’s Hospice in London where she put her vision into action.31 Saunders served as the medical director of St. Christopher’s until 1985, and was awarded England’s Order of Merit in 1989. By the time she died in 2005, at the same hospice she established, there were more than 8,000 hospices worldwide. The U.S. hospice movement began in 1974 upon the opening of the Connecticut Hospice in Branford. Many of Cicely Saunders’ original ideals have been successfully integrated into current hospice practice, contributing to the hospice movement’s significant growth and making it the preferred approach to end-of-life care.

Growth of Programs and Services Since the inception of hospice in 1974, the number of Medicare-certified American hospices has steadily grown, numbering 4,382 in 2017.27 Hospice services are delivered through a variety of facilities that include the patient’s residence, freestanding facilities, hospice programs in home health agencies, units attached to hospitals, and nursing homes. In 2016, 1.43 million Americans received at least one day of hospice services.28 The National Hospice and Palliative Care Organization reported that of the 2.7 million U.S. deaths occurring in

CHAPTER 27 2016, 1.04 million (38.8%) occurred while enrolled in hospice care. Nearly 45% occurred in the patient’s residence.28 Interestingly, 235,200 patients (16.8%) were discharged from hospice, either because of an extended prognosis or because of a desire to pursue curative measures.28 This is a noteworthy statistic, which dispels the misperception that hospice is an irrevocable or predictably ominous choice for patients with terminal illness.

Profile of Hospice Patients According to 2017 outcome data from the National Hospice and Palliative Care Organization, 58.6% of all hospice patients were female. The vast majority (84%) of these hospice patients were age 65 years or older.28 Thus, hospice is and will continue to be primarily a geriatric treatment setting, with numbers increasing significantly with the aging of the baby boomer generation. Currently, hospice patients are predominately Caucasian (48.9%). The existence of racial and ethnic disparities in end-of-life care has been confirmed in several studies.32,33 A systematic review of 13 retrospective cohort studies found statistically significantly lower hospice utilization rates among African Americans compared to Caucasians.32 Another retrospective study examined Medicare hospice database records of 40,960 Caucasian, Hispanic, African American, and Asian beneficiaries who received services for end-stage cancer between 1992 and 2001.33 The results of the study showed that Caucasians had the highest hospice utilization rate (49%) followed by African Americans (36%), Hispanics (37%), and Asians (32%) (Table 27.3). The study also found that nonwhite groups had higher numbers of hospitalizations for longer periods of time as well as a higher likelihood of an intensive care unit admission in their last month of life. Finally, members of these nonwhite racial groups were also more likely to die in the hospital.33 The reasons for these ethnic and racial disparities are not yet clear, and further research is needed to explore the impact of cultural differences, belief systems, and patient preference on selections related to end-of-life care. As the American population becomes increasingly

TABLE 27.3

Hospice Deaths by Race in 2017

Race

Percentage

Caucasian African American Hispanic Asian Other Native American Unknown

48.9% 35.6% 37.4% 31.7% 36.2% 32.9% 34.3%

(Source: National Hospice and Palliative Care Organization. Facts and Figures, 2017 Edition. https://www.nhpco.org/sites/default/files/ public/Statistics_Research/2017_Facts_Figures.pdf.)

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diverse, health care professionals may need to explore culturally sensitive approaches for educating patients of different racial and ethnic backgrounds about the value of hospice care.

Diagnoses The major diagnostic categories of the patients seen in U. S. hospices in 2016 are shown in Table 27.4. A notable trend with respect to these diagnostic categories is the increasing number of patients with Alzheimer dementia and debilitation. Currently it is estimated that 5.7 million Americans are living with Alzheimer disease, and projections are as high as 16 million by 2050.34 Patients with this disease may survive and deteriorate for a period of years while their family members struggle to provide care. As patients with Alzheimer disease become more debilitated, they may ultimately develop a host of conditions that are considered indications of the end stage of the disease. To be considered for hospice coverage, Medicare guidelines require patients with Alzheimer disease to exhibit at least one of the following signs in the previous 12 months: muscle wasting and malnutrition (inanition) with a 10% decrease in body weight, septicemia, decubitus ulcer, aspiration pneumonia, recurrent fever, or urinary tract infection.35 Unfortunately, by the time patients qualify for hospice care under the current guidelines, many patients with end-stage Alzheimer disease are completely dependent and show significant cognitive impairments. The extent of these impairments can challenge caregivers, especially in the realm of determining patient needs for pain medications and other comfort measures. As patients with end-stage dementia enter the hospice system in increasing numbers, further guidelines are needed to determine appropriate indications for pain control and comfort as patients approach end of life. As the burden of caregiving can be considerable in such cases, hospice staff can also provide assistance to family members so that patients can remain in their homes during this process.

TABLE 27.4

Diagnostic Categories of Hospice Deaths

Principal Diagnosis Causing Terminal Prognosis Cancer Cardiac and circulatory Dementia Respiratory Stroke Other

27.2% 18.7% 18.0% 11.0% 9.5% 15.6%

(Source: National Hospice and Palliative Care Organization. Facts and Figures, 2017 Edition. https://www.nhpco.org/sites/default/files/public/ Statistics_Research/2017_Facts_Figures.pdf.)

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Length of Stay The average length of stay for patients in hospice in 2016 was 71 days, with 74.9% of all patients receiving care for <90 days.28 However, 16.8% of beneficiaries were discharged from hospice during that year, with 6.4% being patient-initiated discharges (revocation of benefits), presumably to pursue curative measures. An additional 6.6% were hospice-initiated discharges for patients who were no longer considered terminally ill. These statistics indicate that patient survival is possible even when initially qualifying with the Medicare requirement of an expected prognosis of 6 months or less. Furthermore, this data indicates that a majority of patients and families receive services long enough to benefit from hospice’s compassionate and expert approach to comfort measures. It can be emotionally difficult for family members when admission to hospice is delayed in spite of a compelling need. This can occur when lack of health care provider awareness precludes a timely referral, or when the disease process becomes so acute that the patient dies in the hospital. In an illustrative case, Cheryl, an 83-year-old woman with ovarian cancer, was admitted to the hospital with severe pain. Her attending physician, perhaps fearing the possibility of an overdose, refused to prescribe opioid medications at the level needed for analgesia. When Cheryl’s son arrived from another state 2 days later, he arranged for Cheryl’s immediate transfer to a hospice residence where she died only hours later, still without adequate pain control. Cheryl’s case raises troubling questions. How can health care providers be better educated about the value of hospice services? How can candidates for hospice services be identified in a timelier manner? What are sources of barriers to effective pain control at end of life, and how can they be mitigated? As the discussions related to U.S. health care reform continue, it will be important to identify any additional barriers to timely hospice admission.

Hospice Outcomes Data on hospice outcomes are slowly emerging and showing promising results. One of the most encouraging outcomes, from a study of 4,493 patients, indicates that admission to hospice prolongs life by a mean of 29 days.36 The authors of this study suggested that the reason for this finding was the administration of adequate pain control and its favorable impact on enhancing comfort and quality of life. Another promising trend is that hospice care is a costefficient approach to reducing Medicare expenditures, 25% of which have been reported to occur in the last year of life.37 A study from Duke University reported that the use of hospice services reduced Medicare expenditures by $2,309 during this same period.38

A major quality outcome of hospice care involves the discussion of advanced directives and DNR, the implantation of which is associated with greater patient satisfaction.39 A 2011 study of 591 US hospice facilities indicates that these discussions occur at an average rate of 82% (range¼77%–89%). This study also found that 87% of these hospice facilities assess patient pain at regular intervals. Areas of physical therapy intervention in hospice have been described in a growing number of studies, and considerable agreement among them suggests that pain control, relaxation, respiratory care, and mobility are the major areas of focus.41–48 These interventions are discussed in forthcoming sections.

The Hospice Interdisciplinary Model of Care Today, hospice care involves an interdisciplinary medical, psychological, and spiritual approach to the promotion of comfort and quality of life in patients with a terminal illness and a life expectancy of 6 months or less. Medicarecertified hospice facilities require the involvement of several distinct health professionals who compose the interdisciplinary team (IDT). These professionals represent four domains of care: (1) physical (physician and nurse), (2) functional (consulting therapists, nurses, and nurses’ aides), (3) interpersonal (social workers, psychologists, and counselors), and (4) spiritual (chaplain, psychologists, and social workers).49 Coverage for core services, medications, and equipment is provided to Medicare-certified hospices through a specified daily, or per diem, rate. A 2014 provision in the Affordable Care Act links the extent of payment to compliance with Medicare quality data reporting requirements. For the 2018 fiscal year, Medicare reimbursed hospices who submitted the required quality data at a daily rate of $193.03 for each patient receiving routine home care, $976.80 for continuous home care, and $743.55 for inpatient hospice care.50 Volunteers, who complete a comprehensive training course on the philosophy of hospice, are an important element of each domain of hospice care. Accordingly, volunteers assist with light housework or meal preparation. They can also provide supportive companionship for patients and family members. Physical therapists are not a required “core service” on the hospice IDT, meaning that Medicare does not require their services to be provided for all patients. Rather, physical therapists are part of a group of professionals (including occupational therapists and speech–language pathologists) who must be made available to any patient on an “as needed” or “consultative basis.” Thus, the Medicare hospice benefit includes coverage for physical therapy provided in a hospice setting on a consultative basis. This policy is supported by the 2008 Medicare Conditions of Participation for hospice (section 418.72),

CHAPTER 27 which was revised to include the following language: “Physical therapy, occupational therapy, and speech–language pathology must be— 1. Available, and when provided, offered in a manner consistent with accepted standards of practice; and 2. Furnished by personnel who meet the qualifications specified in part 484 of this chapter (individuals who are licensed in the relevant disciplines).”51 Although this mandate suggests that physical therapy is an important component of the IDT, individual hospice programs must develop their own guidelines for our inclusion. Research is currently underway to help determine these guidelines as well as to support the cost-effectiveness of physical therapist inclusion as a core service on the IDT. Fig. 27.5 illustrates the disciplines that make up the IDT.

Interdisciplinary Team Meetings The Medicare Conditions of Participation51 mandates that each patient in a Medicare-certified hospice receive an interdisciplinary plan of care at the time of admission, which must be updated by the team at least every 2 weeks. Thus, most hospices hold weekly IDT meetings, which facilitate the coordination of care for both new and existing patients. The reports of each core discipline provide a comprehensive picture of the status of each patient and his or her support system. The patient and his or her family members may also request the option to attend the IDT. The IDT model of hospice care prevents many of the communication pitfalls that can impede quality of care

Volunteers Nurses

Therapists

Physicians

Patient & Family

Home Health Aides

Spiritual Counselors

Social Workers Bereavement Counselors

FIG. 27.5 Hospice interdisciplinary team.

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and create patient dissatisfaction. By the thoughtful coordination of every aspect of care, patients and their families can have every element of their quality of life addressed at a time when it is most needed. Because physical therapists are not considered a core member of the IDT, they may not feel that their presence at the weekly meetings is appropriate or necessary. However, it has been the experience of these authors that a consistent presence at weekly IDT meetings is invaluable for educating team members about the value of our services. In addition, we can identify patients who could benefit from a physical therapist examination and intervention. Case Scenario. Alicia was an 86-year-old woman who was admitted to hospice after a series of several strokes that resulted in failure to thrive. Alicia had a long prior history of back pain that had recently exacerbated. At the IDT meeting, a long discussion ensued about appropriate options for pain control, as Alicia wanted to avoid sedation as much as possible. At that point, the physical therapist suggested a trial of transcutaneous electrical nerve stimulation (TENS), describing the use and benefits of this modality in the treatment of back pain. The team agreed that a trial of TENS might provide Alicia with a nonsedating approach to pain control. A physical therapy consult was initiated and TENS turned out to be a successful pain control option for Alicia.

MODELS OF PHYSICAL THERAPY PRACTICE IN HOSPICE AND PALLIATIVE CARE Advanced and progressive disease requires a different orientation to goal setting and treatment than care to regain a premorbid level of function. Dietz identified palliative care strategies in patients with cancer, recognizing the need to address ongoing problems and minimizing complications.52,53,53a Briggs52 further defined models of care in the palliative spectrum by integrating the framework from the Guide to Physical Therapist Practice54 in response to a variety of reimbursement structures. Briggs’ models include rehabilitation light, rehabilitation in reverse, case management, skilled maintenance, and supportive care. As the models are described, keep in mind that they are not necessarily exclusive of one another and may be used together or in succession as a framework to support important interventions of end-of-life physical therapy practice.53

Rehabilitation Light Some patients are admitted to hospice or palliative care after a long course of disease and uncontrolled symptoms, or when experiencing the adverse effects of treatment interventions such as chemotherapy, surgery, or radiation treatment. Likely their pain management has been poor.

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Initial nursing care may improve symptom control so that for the first time in many weeks or months, the person may feel like he or she might be able to make some headway toward a stronger and more functional state. Physical therapy at a traditional frequency of two to three times each week might be more than the person can tolerate and is often considered cost-prohibitive in the per diem reimbursement model of a hospice benefit program. An alternative model is a slowly progressive modified “rehabilitation light” program that provides exercise and functional training during each weekly or biweekly visit. Activities can include targeted strengthening exercises that minimize the number of exercises and functional activities such as a timed sitting program or other ambulation activity that provides both increased strength and endurance as well as improved quality of life. Home exercise program follow-through is an essential part of this approach. Progress toward goals may be extremely slow, though measurable, over a few weeks or even several months. The rehabilitation light approach uses the skilled care of the therapist in providing timely and appropriate exercise instruction and functional training, and it works within the hospice framework emphasizing quality of life despite a terminal diagnosis. Close contact and communication with the interdisciplinary team is vital to ensure all team members recognize and concur with this approach to care, as it may initially appear to conflict with the hospice goal of acceptance of a natural death. The following case scenario illustrates the use of the rehabilitation light approach. Case Scenario. Thelma, age 78 years, was discharged from the hospital with end-stage renal disease and begrudgingly chose hospice because the only alternative offered was to begin dialysis three times a week. She faced multiple other conditions, including chronic obstructive pulmonary disease, diabetes, obesity, an indwelling catheter, osteoporosis, and a fractured metatarsal, but maintained a lifelong outlook that she would overcome these conditions. She accepted hospice care but did not plan on dying. Initially bed-bound and on a pressure-relieving mattress because of her inability to reposition herself, she tolerated minimal exercise but wanted to know what she could do to work toward the goal of getting out of bed to the commode. Beginning with a sitting program in the semielectric bed, within a month she was able to sit at bedside. Each day she worked on her own on a few basic exercises with the support of her granddaughters. At each weekly physical therapist visit she was able to do more, such as come to stand and then transfer with less assistance as her foot pain subsided to allow more weight bearing. By the end of the second month, transfers with family assist to the commode or wheelchair were happening almost daily, though actual sitting tolerance was less than an hour. After continued work in standing for strength, balance, and self-support with weight shifting, Thelma took several steps with a front-wheeled walker by month

3 and declared, “I want to be able to walk out to the kitchen so I can enjoy a cigarette.” Slowly, progressive gait training ensued, followed by instruction of caregivers to assist with limited ambulation, with a wheelchair following. By 6 months, she had achieved her goal as well as transfers with a tub transfer bench and wheelchair negotiation of a ramp to the yard. Thelma’s physical therapy goals had been met with Thelma reaching her maximum potential, and she was shortly discharged from hospice, to live another 2 years. This case demonstrates how physical therapy intervention can help achieve a person’s desired outcome by using restorative therapy principles within the palliative care model in the hospice care environment.

Rehabilitation in Reverse Traditional rehabilitation progresses a person from a lower to higher level of functional ability. Rehabilitation in reverse is the utilization of skilled patient training and instruction to caregivers as a person moves through the transitions from an independently mobile level to a more dependent one as the disease progresses and as strength and balance wane. Transfers may also become increasingly difficult, necessitating the use of equipment (wheelchair, bedside commode, shower bench) and the assistance of another person. Eventually, bed mobility may require assistance for positioning and comfort, and determination of the proper bed surface for skin pressure management. Throughout this course, the physical therapist can use his or her skill and knowledge of optimal ways to move and assist, allowing the patient and family to negotiate this transition toward the end of life. By being able to problem-solve functional dilemmas and anticipate the loss of activities, the physical therapist can enhance the family’s ability to adjust along an unpredictable course of decline and prevent unsafe conditions resulting in falls or caregiver injuries. At each new functional level, the therapist might consider what the short-term goals are for the visit in light of the long-term hospice goal of a safe and comfortable patient-directed death at home. Frequency for such care may be quite variable, and the use of PRN (as needed) visits can be appropriate. Regular communication with the patient, family, and other hospice IDT staff may help identify when visits are needed. The following case scenario illustrates rehabilitation in reverse. Case Scenario. Frank, age 84 years, developed back and abdominal pain while traveling in a recreational vehicle one summer and eventually was diagnosed with advanced adenocarcinoma. Frank and his family decided not to pursue treatment but rather to try to enjoy the remaining time they had together, at home. When Frank was admitted to home-based hospice, nursing was able to manage his pain while social work fostered family support, with daughters traveling for respite and help when

CHAPTER 27 needed. Frank had been losing weight but had been active doing household and garden chores. Some unsteadiness in the yard one day made the IDT and family concerned about the possibility of falling and a physical therapy referral was made. Frank’s lower extremity strength was decreased, with significant muscle atrophy visible, although his gait appeared symmetrical. However, any challenge or advanced balance activity revealed unsteadiness. He was willing to accept a standard cane after a trial and instruction in several alternative assistive devices. A therapy visit frequency of two to four times a month was established to follow his adaptations. Within a week he requested a quad cane, which was properly fitted. He was instructed in use of the quad cane within his home, on the steps to the driveway, and about his shop. Frank declined any exercises, stating his preference was to spend his time and energy doing what he loved most. By the end of a month, it was evident that bilateral support was needed as he walked about with the cane in one hand while constantly reaching for support on the nearest wall or furniture. A trial of a front-wheeled walker was offered, providing new freedom, despite some difficulty in navigating about his favorite spots. His wife and daughters watched over him with concern as they could see his continued weight loss and declining energy level. Within the second month, a second near fall occurred, making it apparent that the options of having a family member provide contact assist or use of a wheelchair would become necessary. This transition required more instruction and significant discussion of his physical course. Soon Frank was spending almost all of his time sitting, and the wheelchair became his more ready companion. Moving from sitting to standing was becoming more difficult, so instruction was provided to Frank and his family on his wheelchair setup and body positioning for a transfer, as well as assistance techniques. His reluctance to use a bedside commode required an increasing number of transfers throughout the day and night—a strain on all involved. Frank was preparing to let go, as his sense of meaningful participation in life was ebbing. A sudden change in level of awareness and physical status required family training on bed positioning and turning for pressure relief. After 3 days of intermittent consciousness, Frank died in his own bed, with his wife and two daughters nearby. This case illustrates the type of effective care a physical therapist can provide in the face of a terminal diagnosis and declining mobility, rather than the traditional care of expecting participation in progressive-resistive exercise to achieve goals of enhanced mobility. Interestingly, the patient and family’s acceptance of Frank’s impending death made this approach feasible and appropriate.

Case Management Case management is a frequently used model of care for nursing and physical therapy in many specialty clinics

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to provide long-term, ongoing care for challenging and changing conditions such as amyotrophic lateral sclerosis, spinal cord injury, amputation, and diabetes. In home health, case management is used to provide similar follow-up, care, and instruction for people with complicated care, multiple comorbidities, and unskilled or multiple caregivers.55 This model is useful in palliative and hospice care as well. With a person who is relatively stable though gradually declining over weeks or months, periodic reevaluation can identify physical and functional changes that need to be addressed to prevent complications. Interventions can include instructing the caregivers in providing optimal assistance, updating the home exercise program, and outlining problems that might be anticipated. Monthly or bimonthly visits with appropriate instruction and follow-up intervention can accomplish this end. The case of Evelyn illustrates case management. Case Scenario. At 94 years, Evelyn retained a regal demeanor, sitting in her chair holding court with four generations of offspring attending to her, although she did not allow much to be done for her. With end-stage heart disease as an admitting diagnosis, along with osteoarthritis, cataracts, and hearing loss, life had become a challenge. She insisted on doing almost everything herself, despite exerting high levels of energy. An initial physical therapy visit offered recommendations to make the environment safer and easier to move around and adjust her equipment for improved comfort and efficiency. Monthly visits were scheduled to reassess her safety and mobility and to instruct various caregivers in different ways to assist as Evelyn’s condition became more fragile. Begrudgingly she allowed more help with bathing, dressing, and other tasks. Because sitting was her primary position of comfort both day and night, skin integrity and pressure relief concerns were addressed. Adapting her chair to an optimal height with the fabrication of a platform underneath the entire chair elevated the seat height while maintaining the other comfort features and eliminated the instability of multiple cushions. She enjoyed doing some exercises while she sat, if someone did them along with her, and the family was more than willing to comply. Her family’s concerns about potential falls were discussed repeatedly and at length in the context of physical limitations, Evelyn’s variable willingness to have assistance or use devices, and her right to self-determination. Evelyn was under hospice care for 8 months, long enough to celebrate her 95th birthday. Just a week later, her daughter found her in her chair one morning, having expired peacefully during the night. Traditional physical therapy might have been offered on a very short-term basis to achieve a specific short-term goal and then the patient would have been discharged as she did not have rehabilitation potential. However, under hospice, supportive, palliative care can be provided, easing the transition to dependency and facilitating a safe and comfortable patient-directed death.

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Skilled Maintenance

Supportive Care

When a patient must perform an activity that is medically necessary, skilled maintenance has been identified for use under Medicare home health guidelines.55 In traditional home health situations, care that might, under usual circumstances, be taught to a caregiver may require skilled physical therapist intervention because of specific complexity. An example might be the performance of range of motion to a joint proximate to an unstable fracture. In hospice, skilled maintenance is used to perform an important functional activity, which the patient is no longer able to perform alone or with a family caregiver yet can complete with the assistance of the physical therapist. For example, because of extensive weakness, tone or balance deficits, or caregiver limitations, a therapist may be needed to provide help with ambulation or bed transfers. Under hospice rules, when these activities provide for significant quality of life, they are considered skilled care. Consultation with the IDT is important to establish a care plan that provides for the frequency needed, as well as patient and family support through the process of letting go of activities during the course of care. Case Scenario. Roger, age 74 years, was a retired rancher and businessman. His life was changed with the diagnosis of an astrocytoma and the resultant physical trauma of brain surgery to resect the tumor, radiation treatments, and the array of medications to control seizures, swelling, and other adverse effects. He was eventually admitted to hospice, and a physical therapy consult was initiated because the patient’s wife was having difficulty helping him transfer because of the dense left-sided paresis and spasticity he experienced. The primary focus of physical therapy was problem-solving environmental challenges and transfer techniques to allow his petite spouse to assist with the patient’s transfers to every surface. In conversation, it became clear that Roger’s sense of self had been dramatically affected by confinement to a chair. What he missed more than anything was being able to walk about his home and gaze through the windows at “his spread.” A trial of gait with a hemi-cane, a plastic ankle–foot orthosis, and a gait belt on the next visit revealed Roger’s ability to walk up to 50 feet with help to maintain balance, weight shift, and control the advance of his left leg during swing phase. He was elated at this recovered ability, and his physical therapist decided with the patient that it could become a part of a weekly physical therapy visit. Other issues arose, including travel plans to a national rodeo and training other family caregivers. As the disease progressed, Roger lost the ability to walk, even with assistance, but was able to stand at the counter with support to look out over land he loved. The opportunity to continue being mobile until it was no longer possible, even with assistance, gave meaning to his existence.

Supportive care is often provided throughout the course of care and is composed of the psychosocial support associated with end-of-life process, as well as physical measures. The frequency of supportive care measures is variable. Physical measures may include range of motion and massage. Physical therapy pain management techniques should coincide with the frequent use of a medication regimen by nursing. Some mechanical pain that is not treatable with even high levels of opiates can be diminished using a physical therapist’s knowledge of biomechanics and positioning. Pressure relief becomes an issue with progressive weakness, decreased mobility, insufficient nutrition, and fragile skin. Both seating and bed surfaces should be considered to manage a failing body’s integumentary system. A more complete discussion of these clinical supportive care measures follows in the next section.

CLINICAL ISSUES—CONSIDERATIONS FOR CARE As with the models for practice in hospice and palliative care, the circumstances of declining function and often very limited performance status demand the attention of the physical therapist to reexamine elements of clinical practice in this light. Subtle changes in the way knowledge is used and clinical skills are applied can result in substantially improved short-term outcomes for those individuals in the last stage of life.

The Role of Exercise Exercise plays a critical role in maintaining strength to allow adequate functional mobility for quality of life. When determining the appropriateness of exercise for a body that is failing at the end of life, the cause of the weakness should be considered to determine if increased strength is possible and/or realistic. Weakness that can be reversed may be caused from chemotherapy or radiation therapy,56 prolonged hospitalization,57 or a period of immobility or forced bed rest.58 The client’s prior exercise and fitness history is also significant.59 A person with substantial prior participation in some strength and endurance activities will respond in a different way than someone who has never participated in exercise as a lifestyle behavior. Ability to differentiate effort, fatigue, and workload from soreness or pain will play a role in performance and success as well. Some patients will decline an exercise program as part of their end-of-life care, choosing only to participate in activities that provide quality of life—a decision that must be respected by the therapist. The limited physical capacity that may be present in a chronically debilitated person can guide us toward the use of “rehabilitation light” as previously discussed. Focusing

CHAPTER 27 the exercise program on maximum strength outcomes with a limited number of exercises can enhance success. Recent evidence indicates that a home exercise program for people older than age 65 years with two exercises results in a better performance outcome than with eight exercises.59 All exercise should address functional goals59 and thus be directly seen by patients as a means to an end, rather than something to keep them occupied. Positively reinforcing experiences gives feedback that will provide the best outcome. If the patient feels overwhelmed or experiences significant delayed-onset soreness following activity, it is likely that the decreased quality-of-life satisfaction will inhibit further participation.60 Even patients with severe chronic obstructive pulmonary disease have been found to benefit from a biweekly supervised home exercise program over a 4-month period, with a 3% gain as opposed to 28% deterioration in the nonexercising control. These results are not overwhelming evidence of the effectiveness of exercise training, but the patients in this study belong to a severely disabled population with a progressive disease and a grim outlook.61 Measuring resting heart rate (RHR) and activityrelated heart rate is useful in determining physical performance status, when related to the predicted maximum heart rate (age-adjusted maximum heart rate) (using 220 - age, or less, or 220 - RHR  exercise level). With a failing body, resting heart rate may be much higher than 100 beats per minute. A 75-year-old man with a predicted maximum heart rate (PMHR) of 145 and an RHR of 120 is already performing at more than 80% of maximum (82%). After walking 30 feet to the bathroom using a wheeled walker, he nearly collapses with a heart rate of 144, more than 99% of PMHR. This adverse event represents not only a significant fall risk from collapse but also an effort comparable to that of a sprint performance on a running track. An explanation of this relative maximum aerobic effort is often affirming to the patient and reassuring to the family. Similarly, patients with progressive weakness and muscle atrophy will experience difficulty moving from sitting to standing, especially from their favorite chair. Physical therapists have a critical opportunity to educate patients, their families, and their caregivers regarding maximal physical capacity for anaerobic muscle contraction and the work that is done just to move from one position to another. Sharing these examples with both patient and family can lead to an affirmation that perceived exertion is extremely high while in the process of decline and also some recognition of the effort it takes to accomplish even the smallest of tasks. In conclusion, it is important that the physical therapist offer the option of specific exercises and activities that are both accomplishable and meaningful to the patient’s life condition, along with education that puts exercise and physical performance in the perspective of physical changes toward the end of life. If such a program is well

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integrated into a daily routine, the optimal understanding and outcomes will be achieved.

Equipment and the Environment The ability to move from sitting to standing may require greater effort or assistance with increased weakness. Adapting a favorite recliner chair to an optimal height can be achieved by instruction to the family in fabrication of a platform underneath the entire chair, often of 4 to 6 inches. This elevates the seat height, maintains the other comfort features, and eliminates the instability of multiple cushions. Some families may choose to purchase an electric lift recliner as another option. Other equipment in the home such as a bedside commode or shower bench might need to be elevated accordingly. Energy conservation can be of great significance, as patients are often performing at near-maximal energy output levels and fatigue rapidly as noted earlier. Standard measurement for walker heights allows for significant elbow flexion. In younger populations and people with adequate strength, the energy costs of this upper extremity use may be easily within their ability. In tests of upper extremity forces with variable walker heights while maintaining a stressful lower extremity non–weight-bearing status, evidence shows that more complete elbow extension can reduce elbow force moments.58 With the older adult in terminal decline, adjusting a walker height to allow almost complete elbow extension can provide energy savings that will allow safer and easier ambulation for an extended time during their illness.

Comfort Care Measures Comfort care of the terminally ill has risen to the forefront with increased awareness of the physical and psychosocial variables that affect and accompany the process.62 One of the primary goals of end-of-life care through hospice is pain relief and comfort. Physical therapy has much to offer through appropriate direct interventions and the education and training of family caregivers. Edema is a frequent symptom as the body fails, whether from adverse effects of treatment (surgery and radiation), decreased mobility and stasis of position,63 or failure of body systems as disease progresses. Swollen limbs can become extremely uncomfortable from the internal pressure on sensory receptors. Manual lymphatic drainage and other massage techniques can provide temporary and longer-term relief in many such situations. Positioning and wrapping with short stretch bandages also may be helpful to reduce limb size and allow easier functional mobility with unweighted limbs.64 By demonstrating these techniques effectively and teaching the caregivers to follow a modified program that is not overly taxing on the family, caregivers can be taught by a physical therapist to provide a successfully satisfying activity with their loved one. It is understood and should be explained that in

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some cases the efforts to control edema may fail because of the body’s system failure, and this is not a failure of the caregivers. Despite this eventual outcome, comfort from the touch of massage may still be enjoyed. End-of-life experiences may include a sense of “needing to go,” as the person undergoes transitional changes and separation. Younger and more able-bodied patients can become very restless and walk or pace endlessly. This phenomenon becomes a more challenging management problem if the terminal restlessness occurs in someone unable to get up from bed safely.65 Therapeutic techniques such as holding and rocking (in bed or at the bedside) may be used and also taught to caregivers as a way to provide the physical and vestibular sensation of movement and the “going” that is so keenly desired.66 This is an excellent adjunct to the medications frequently offered by the hospice team to control this symptom. Range of motion is another intervention that must be considered from a different perspective. Range of motion may be provided to maintain enough range to allow for personal care or limiting finger flexion to prevent palm injury. If movement is painful, range of motion should be limited to this practical standard. Some people may very much enjoy the stimulus of having their otherwise immobile and understimulated limbs moved for comfort. With proper instruction, caregivers or other volunteers may be able to do passive or assistive range of motion regularly. Another application of range of motion in end-oflife care is to provide the gentle stimulus of passive, assistive, or active movements of the lower extremities, along with the verbally guided visualization images of a favorite walk that the person might have enjoyed (e.g., to a park, the ocean, or community locations). This “walking together” can provide the patient and caregivers with a sense of doing something purposeful and pleasurable as they reflect on their memories and life closure issues together.

Perspectives on Falls at End of Life Falls are always a consideration for physical therapists and require special considerations during the end-of-life course.67 The questions one must ask are, “Is it possible for a person to transition from active and functional to a premorbid state without increased risks of falling?” and “What should we do about that?” Much research has been done to assess and limit falls with appropriate intervention. The wide range of patient abilities in palliative care and hospice practice necessitate targeting assessment tools to the abilities of the person such as the Timed Up and Go or even just observation. Interventions also must be carefully considered as well, with the variable and often progressive nature of the disease or condition. Zero risk and zero falls cannot be the goal with any kind of quality of life. Risk management at an acceptable level with quality-of-life considerations as determined by patient desires for independence and family concerns

Therapist

Patient

Clinical Findings Risks & Solutions

Desire for Mobility Quality of Life

Triangle of Safety

Family/Caregivers Stated fears & concerns Care abilities

FIG. 27.6 Briggs’ Triangle of Safety when considering addressing falls and safety risks. (From Briggs 2018.) should be the outcome. Falls will happen in the course of decline, and for some a fall may even be the natural way out of this world. The Joint Commission supports having a program in place that is consistent with the provider organization, the clients served, and the environment of care.68 A reasoned approach in the hospice environment is to use a concept such as the Triangle of Safety, identified by Briggs in Fig. 27.6. The Triangle of Safety involves the three main parties involved in care decisions: the patient, the family/caregivers, and the clinician. Communication and sharing of concerns and experiences are essential. This alliance69 empowers the patient to decide what is agreeable, the family caregivers to voice their concerns, and the therapist to identify clinical findings and solution options to consider.69 Together an acceptable level of support and intervention can be found, which may include environmental changes, equipment use, assistance, or other changes. People who perceive that they are being “called by others” or “going to the light” may even try to get up though no longer physically able, which is beyond anyone’s control.70 The therapist’s role evolves in the hospice environment from directly being a care provider when fall training and interventions no longer are beneficial or accepted to that of a risk and solution identifier. Our role is to support the decline and dying process and trust that those in our care will make the most informed decisions in line with their understanding of the outcomes. Two case examples follow. Case Scenarios. Tony was in his 40s and had lived with HIV/AIDS for nearly 18 years. Now on hospice and living alone, he recently fell while answering the phone, which led him to reluctantly agree to a physical therapy referral. His father met the therapist outside and demanded that we make his son be safe. Muscle wasting, lethargy, and massive edema were the primary conditions affecting Tony’s gait and balance. Multiple devices were offered and tried: a straight cane, quad canes, pick-up and front wheeled walkers. Considerations were discussed including weight, stability, and even appearance. Tony went back and forth

CHAPTER 27 but eventually chose the front-wheeled walker, which made him more stable and reassured his family. This choice allowed him to live his last days without further falls. Martha was 93 years old and had graduated from hospice admissions for cardiac failure twice and was now referred by neurology to palliative care home health for gait training and balance. She was quite determined and able to make some gains in both strength and balance using a walker or cane with constant assistance. As discharge was nearing, a moment of inattention by her live-in attendant allowed a fall, which resulted in compression fractures of the spine. With significant pain, now suddenly bedfast, and having difficulty with air exchange, Martha was again open to hospice. As her daughters gathered and accepted Martha’s preparing to let go this time, she lived just 2 more weeks. Through a fall, Martha had found her way “home.”

PAIN AND SYMPTOM MANAGEMENT Defining Pain at End of Life A painful death is among the greatest fears surrounding the end-of-life process; accordingly, one of the most important goals in the management of terminally ill persons is timely and effective pain management.48 The hospice approach to pain supports this goal, specifically in terms of reducing the level of related distress to a tolerable level within 48 hours of admission. Although pain can be academically defined as “an unpleasant sensory experience associated with actual or potential tissue damage,”70 the definition used in hospice is “whatever the patient says it is.”71 Thus, any patient report of pain is acknowledged and addressed in a compassionate and efficacious manner. In the hospice setting, pain assessment is considered the “fifth vital sign,”1 an important indication of the patient’s physiological homeostasis and well-being. In addition, pain is viewed as an impediment to the patient’s spiritual, psychological, and emotional processes of life review and meaningful closure with loved ones. Hospice nurses are experts in the area of pharmacologic approaches to pain management. Working with the patient and family, they can quickly identify strategies to reduce, and in many cases eliminate, discomfort. Physical therapists can also provide the nonpharmacologic interventions described in the previous section on comfort measures, which may enhance the effectiveness of medications. In many cases, physical therapy interventions such as massage, guided breathing for relaxation, TENS, and gentle movement can even reduce the need for pharmacologic agents. In cases where the patient is unresponsive, delirious, or aphasic, potential causes of pain are identified and addressed. For example, an unresponsive patient with a severe urinary tract infection would most likely be treated for pain. In addition, if a patient has previously reported a

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consistent pattern of pain during periods of consciousness, it will probably be assumed that this discomfort remains even when the patient is no longer able to verify this.

Prevalence of Pain at End of Life Although the prevalence of pain at end of life will vary depending on the nature of the terminal disease process, research indicates that two–thirds of patients with advanced cancer experience pain.72 Pain and discomfort are multidimensional constructs. One assessment known as the Memorial Symptom Assessment Scale-Short Form (MSAS-SF)73 is a patient self-report of the spectrum of cancer-related sources of physical and psychological distress (Fig. 27.7). The MSAS-SF also enables patients to rate the extent to which particular symptoms affect them, using a 5-point continuum between not at all (0) and very much (4). The two most common forms of discomfort in 299 patients with advanced cancer completing the MSAS-SF included pain (72%) and lack of energy (70%).73 Furthermore, more than 50% of these patients rated these symptoms as affecting them “quite a bit” or “very much.” Finally, between 35% and 39% of these patients reported occasional psychological distress such as worrying, feeling irritable, and feeling sad. Clearly, the physical and psychological effects of advanced cancer frequently affect most patients. The multidimensional element of pain, particularly at end of life, was first recognized by Cicely Saunders, who defined pain as “not just an event, or a series of events, but rather a situation in which the patient is held captive.”74 Saunders defined the collective impact of these discomforting “events” as “Total Pain,” which is illustrated in Fig. 27.8. In developing the interdisciplinary model of hospice care, Saunders considered that each professional member had a role in helping ease the various contributions to a patient’s total pain. For example, a hospice chaplain could address spiritual pain, whereas a social worker might mitigate the issues of bureaucratic pain (i.e., the frustration of filling out the endless and tedious forms required for insurance claims). By addressing the many contributions to distress, patients’ energy resources can then be marshaled for meaningful and comforting activities, thus enhancing their quality of life. In the context of total pain, Saunders’ approach to management was to employ both pharmacologic and nonpharmacologic measures proactively rather than reactively. Without a doubt, effective pain management is one of the most important of Saunders’ many contributions to the development of a standardized approach to compassionate end-of-life care. She was among the first to demonstrate that inadequate pain management at the end of life hastens death by increasing physiologic stress, myocardial oxygen demand, and the work of breathing.74

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Patient’s Name

Date

/

/

ID #

MEMORIAL SYMPTOM ASSESSMENT SCALE – SHORT FORM [MSAS-SF] I. INSTRUCTIONS: Below is a list of symptoms. If you had the symptom DURING THE PAST WEEK, please check YES. If you did have the symptom, please check the box that tells us how much the symptom DISTRESSED or BOTHERED you.

Check all the symptoms you have had during the PAST WEEK.

Yes (√)

IF YES: How much did it DISTRESS or BOTHER you? Not at A little SomeQuite all bit what a bit (0) (1) (2) (3)

Very much (4)

Difficulty concentrating Pain Lack of energy Cough Changes in skin Dry mouth Nausea Feeling drowsy Numbness/tingling in hands and feet Difficulty sleeping Feeling bloated Problems with urination Vomiting Shortness of breath Diarrhea Sweats Mouth sores Problems with sexual interest or activity Itching Lack of appetite Dizziness Difficulty swallowing Change in the way food tastes Weight loss Hair loss Constipation Swelling of arms or legs “I don’t look like myself” If you had any other symptoms during the PAST WEEK, please list them below, and indicate how much the symptom DISTRESSED or BOTHERED you. 1 2 II. Below are other commonly listed symptoms. Please indicate if you have had the symptom DURING THE PAST WEEK, and if so, how OFTEN it occurred.

Check all the symptoms you have had during the PAST WEEK.

Yes

Rarely

Occasionally

Frequently

(√)

(1)

(2)

(3)

Feeling sad Worrying Feeling irritable Feeling nervous

FIG. 27.7 Memorial Symptom Assessment Scale-Short Form (MSAS-SF).

Almost constantly (4)

CHAPTER 27 Disease effects Treatment effects Fatigue Anger at treatment failure Insomnia Family concerns Fear of pain or death Dyspnea Loss of income Helplessness Loss of roles Physical Depression Feeling isolated Anxiety Bureaucratic pain Psychological

Total Pain

Social

Spiritual Why me? Why does God let me suffer? What’s the point of it all? Can I be forgiven for past wrongdoing?

FIG. 27.8 Saunders’ model of total pain.

Furthermore, inadequate pain relief increases the burden of total pain, causing significant anguish for both the patient and family. Accordingly, given the prevalence and intensity of physical pain among terminally ill patients, Saunders advocated the use of opioid medications in sufficient doses to maintain a consistent level of relief. Her well-known maxim in this regard was “constant pain needs constant control.”74 Nevertheless, despite considerable evidence for their use, barriers exist within society and the medical system that can prevent adequate dosing of the highly effective opioid medications. Because of their potential for abuse and addiction as well as opioids’ popularity as street drugs, many states have restrictive laws that can limit their availability in both rural and inner-city pharmacies.1 Accordingly, it is critical for health professionals working in pain management to understand the true nature of addiction as well as physical dependence, tolerance, pseudo-tolerance, and pseudo-addiction to avoid perpetuating existing barriers to appropriate pain management at end of life. In reality, both past and recent studies have found addiction rates of anywhere between 0% and 7% in patients receiving opioids for end-stage cancer pain.75,76 In end-of-life care, concern for patient comfort is first and foremost. Moreover, nurses and other health professionals working in a hospice setting may need to educate and advocate for their patients to ensure their access to appropriate medications and need for optimal comfort. To educate health professionals, the American Academy of Pain Medicine generated a consensus document in 2001 defining the terms addiction, physical dependency, and tolerance.77 These definitions are defined in Box 27.3.

Types of Physical Pain To achieve the outcome of consistent analgesia, it is important to understand the physiological sources that

BOX 27.3

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Definitions of Terms Related to Addiction

Addiction: a primary, neurobiological, social, and environmentally based disease characterized by behaviors that include one or more of the following: impaired control over drug use, continued use despite harm, and craving Physical dependence: a normal state of adaptation manifested by a drug class–specific withdrawal syndrome that can be provoked by abrupt cessation, rapid dose reduction, decreasing blood levels of the drug, or administration of an antagonist Tolerance: a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug’s effects over time Pseudoaddiction: the false assumption of addiction in a person seeking relief from pain Pseudotolerance: the false assumption that the need for increasing doses of a medication is the result of tolerance rather than disease progression or other factors77

contribute to pain. For example, physical pain can derive from organs, neural tissue, or musculoskeletal components, each of which produces a distinct type of discomfort and requires a specific class of pharmacologic agents. Nociceptive pain (from disease or damage to skin, muscles, bones, or connective tissue) and neuropathic pain (from disease or damage to neurons involved in pain signaling) are the two most common pain syndromes at end of life. Another form of discomfort is known as breakthrough pain, which is a sudden increase in pain intensity lasting up to an hour or more despite the use of continuous opioid medication. An understanding of pain’s sources and behavior promotes the physical therapist’s effective advocacy and pain management. In the presence of advanced disease (particularly with cancer), it is not uncommon for patients to experience brief intermittent episodes of severe pain lasting from several seconds to several minutes. In most cases, this “breakthrough pain” occurs in the presence of overall effective baseline analgesia. Although these episodes can occur without apparent provocation, they may also correlate with changes in activity. Breakthrough pain can be effectively managed, usually by providing a fast-acting medication in a specific percentage of the patient’s overall daily dose. It can be helpful for patients to maintain a pain diary, which allows them to record the impact of activities and other factors on their pain levels. The American Cancer Society has developed a pain diary found on their website.78 The pain diary includes useful questions that can help physical therapists in the assessment of pain such as location, nature (e.g., stabbing, throbbing, shooting), pain rating, and provoking factors. Decisions related to appropriate medications for pain control are based on patient or caregiver reports. It is important for health professionals to recognize that patients, especially older ones, may be reluctant to report the true nature, extent, and severity of their pain. Barriers

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to accurate reports are numerous, including cultural differences, fear of being seen as complaining, lack of knowledge about pain control, and fears of medication adverse effects, tolerance, or addiction.1

Pharmacologic Measures for Pain Control There are several effective medications that can be used for pain control in patients facing the end of life. This section will provide a brief overview of the unique aspects of pain medications in chronic, palliative, and hospice situations. For a more detailed description of these medications, the reader is referred to Chapter 6 on pharmacology. The selection of the appropriate class of medications is determined by the source of the pain as well as its severity. The World Health Organization (WHO) has developed a pain ladder that can also be used to determine the appropriate medications in end-stage cancer (Fig. 27.9). Nonopioid Analgesics. This class of medications includes acetaminophen (Tylenol) and nonsteroidal antiinflammatory drugs (NSAIDs). The WHO pain ladder recommends nonopioid analgesics for mild pain, which is <3 on a 1 to 10 numerical scale, where 0 is no pain and 10 is the worst imaginable pain.48 Specific medications, indications, side effects, and mechanisms of action are described in Chapter 6, Pharmacology. Opioid Analgesics. Opioid analgesics are considered the most effective medications for the management of moderate to severe pain and morphine is a staple in end-of-life situations. Accordingly, the WHO pain ladder recommends these as the preferred medication in such instances.79

Freedom fr cancer om pain

Opioid fo

Opioid fo r mod severe p erate to a ⫾nonop in, io ⫾adjuva id nt Pain pe rsis or incre ting asing

r mild to mo ⫾nonop derate pain io ⫾adjuva id nt

3

2

Pain pe rsis or increa ting sing Nonopio id ⫾adjuva nt

1

FIG. 27.9 World Health Organization’s pain ladder. (Accessible at http://www.who.int/cancer/palliative/painladder/en/. Reprinted with permission.)

Moderate pain is defined as between 4 and 6 on a 0 to 10 numerical scale, where 0 is no pain and 10 is the worst imaginable pain. Severe pain is defined as between 7 and 10 on the same numerical scale.48 These medications bind to opioid receptors in the brain, blocking the release of neurotransmitters involved in processing pain perception. In addition to their pain-relieving effect, opioid medications are also useful in treatment of dyspnea at end of life. In end-of-life care, optimal pain control is the ultimate goal of pharmacologic treatment; thus, dosing is determined by the level required to attain this outcome. Fortunately, many of the opioid medications can be delivered in either extended- or immediate-release formulations, allowing for a more consistent level of control. Often, both types of medications are used. Opioid Adverse Effects. Fortunately, allergic reactions to opioid medications are extremely rare, and the only contraindication to their use at end of life is a history of a hypersensitivity reaction such as rash or wheezing. One of the more common opioid adverse effects is constipation, and it is thus recommended that a prophylactic bowel regimen be started immediately upon the initiation of these medications. In addition to stimulant laxatives and the encouragement of adequate fluid intake when possible, interventions such as abdominal massage, range of motion, and upright mobility training can also assist bowel evacuation. Sedation is another common adverse effect of opioid use, particularly with the initial doses, and it is important to recognize that although many patients may view sedation as a barrier to quality waking time with family and loved ones, others may consider it a welcome opportunity for rest, particularly if insomnia has been problematic. One of the most feared (yet relatively rare) complications of opioid use is respiratory suppression. Fortunately, this adverse event is usually preceded by sedation, which provides an opportunity for symptom reversal through the use of an opioid antagonist such as naloxone. Indications for reversal generally include lack of arousability and a drop in oxygen saturation. The highest risk for respiratory depression occurs with the first doses of opioids in patients without a prior history of their use (opioid naïve). Opioid-tolerant patients who have achieved good pain control generally do not develop this complication. The Opioid Crisis and Physical Therapy. Over the past several years, the United States has experienced an increased use and abuse of opioid medications. In 2016, the White House and the Centers for Disease Control and Prevention declared an opioid epidemic and announced initiatives to address these issues. These initiatives included modernizing regulations, prescription practices, and production of opioids. Although these initiatives are warranted and important in light of the number of deaths due to opioid misuse, there remains concerns about the potential inadvertent consequences on the management of those at end of life. As this patient population often requires opioids for management of

CHAPTER 27 symptoms, a reduction in availability or increased social stigma of using opioids could reduce their comfort and quality of life. Physical therapists are experts in nonopioid management of pain. As the role of the PT in HPC is increasing, therapists should look for opportunities to assist with providing symptom control without excessive opioid use. The therapist should be cognizant that although a goal is to reduce the overutilization of opioids, in the HPC population, opioids are a necessary and beneficial medication for symptom control and to ensure death with dignity and comfort.80 Adjuvant Analgesics. This class of medications includes an array of agents that produce analgesic effects. These include antidepressants, anticonvulsants, corticosteroids, local anesthetics, and calcium channel blockers. Although these medications can be effective for milder pain when used in isolation, they are most typically used in conjunction with opioids. They can be particularly effective in the presence of severe neuropathic or bone pain. Routes of Administration. Analgesic medications can be administered through a variety of methods. Although many patients with advanced disease are able to take medications orally (either in pill or liquid form), others may require alternative forms of delivery. Thus, medications can be administered through a variety of routes, including mucosal, transdermal, rectal, or topical approaches. One of the most common routes for patients without oral function is through rectal or vaginal suppositories. Medications also can be delivered through intravenous or intrathecal methods; however, whenever possible, the least invasive approach is used. Intramuscular injections are generally not used in endof-life care because they are painful in themselves, and because rates of vascular drug absorption are highly variable when using this approach. In selecting the preferred route of delivery for pain medications, the hospice nurse will work closely with the patient and family to determine the most effective, consistent, and efficient approach. Medical Marijuana. Over the last decade there has been increased acceptance of the use of medical marijuana for a number of conditions, including advanced cancer, chronic disease, and end-of-life situations.81 With the recent legislative changes and associated media coverage, individuals with a life-limiting condition may be employing marijuana or its derivative products to assist with symptom control. There are two active cannabinoid compounds most commonly used, delta-9-tetrahydrocannabinol (THC) and cannabidiol (CBD). The THC compound is commonly associated with psychoactive effects, whereas CBD is associated with nonpsychoactive effects such as controlling pain and spasticity. Medical marijuana and cannabinoids have been used for treatment of pain including cancer-related pain, neuropathic pain, and spasticity. Medical marijuana has also been used to treat chemotherapy-induced nausea and vomiting, as an appetite stimulant, and for psychological or neurological conditions

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such as anxiety or spasticity. Dronabinol (Marinol, Syndros) is a THC-based capsule or solution taken by mouth and is approved by the Food and Drug Administration for treatment of nausea and vomiting when symptoms are not controlled using other conventional methods.82 Because this medication contains THC, psychotropic effects may be encountered with individuals using dronabinol. Because there remains a potential social stigma to this medical marijuana or its derivatives, some patients may not be forthright with disclosing its use; therefore, clinicians may need to specifically ask about this use in patients with a life-limiting condition.81 Finally, physical therapists who encounter terminally ill patients with symptoms not managed with traditional medication regimens may consider a discussion with physician colleagues to assess if marijuana products may be beneficial.

PALLIATIVE SEDATION For some individuals, the end-of-life process may involve levels of pain that are intractable even with aggressive pain management efforts. In such cases, the only remaining approach is to induce sedation to alleviate conscious awareness of pain. Palliative sedation (PS) is defined as “the monitored use of medications (sedatives, barbiturates, neuroleptics, hypnotics, benzodiazepines or anesthetic medication) to relieve refractory and unendurable physical, spiritual, and/or psychosocial distress for patients with a terminal diagnosis, by inducing varied degrees of unconsciousness.”83 The American Academy of Hospice and Palliative Medicine describes mild and deep levels of PS, which vary in terms of the level of consciousness preserved.84 With mild sedation, smaller doses of short-acting medications such as midazolam at an infusion rate of 0.5 mg/hour are used, promoting enough alertness to allow the patient to engage in conversation. Should mild sedation not be sufficient, a deeper level may be required, and in this case, higher doses of midazolam may be used in addition to longer-acting medications such as benzodiazepines and morphine sulfate.84 In having two progressive levels of PS available, patients and their families can maintain a level of choice, which enables them to fully direct their care with the assistance of the hospice team.

Ethical Framework for Palliative Sedation The intent of palliative sedation is to provide comfort when all appropriate methods of pain control are inadequate. Patients and families must clearly understand that the overall intent of PS is to provide relief from unendurable suffering, but not to hasten death. Nevertheless, the end result for many patients undergoing PS will be the eventual cessation of respiration followed by death. Although death is an expected outcome from the disease process itself, the addition of PS cannot be definitively excluded as a contributory factor. Thus, the ethical

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framework in which PS is grounded is that of “double effect,” which suggests that the beneficent intention of reducing suffering may produce the unintentional effect of death. In addition, the principle of proportionality suggests that the selection of PS should be proportionate to the extent of patient suffering, treatment alternatives, expected benefits, and possible harm.84 A 1997 ruling of the U.S. Supreme Court declared that there is no constitutional right to physician-assisted suicide.85 Terminal sedation is intended for symptom relief and is appropriate in the aggressive practice of palliative care.85

Initiating Palliative Sedation The decision to initiate PS is based on the assessment of patient symptoms and, often, the patient’s stated desire to be free of his or her discomfort. Once it is clear that PS is the only remaining treatment option, the patient or health care surrogate (the individual appointed to make medical decisions on the patient’s behalf) must be clearly instructed in the goals and expected outcomes of treatment. Informed consent is typically required. Members of the hospice team are also available to provide any support that may be needed by the patient or family. In most cases, PS is initiated at the onset of terminal restlessness, an indication that death is imminent within days or hours. Although the most common indication for PS is agitated delirium, others include pain, seizures, and dyspnea and severe anxiety. Many patients have more than one symptom, which greatly compounds their distress. One patient of the authors described the feelings of terminal restlessness as “a horrible sense of doom and fear, like a weight crushing down on me.” There are many different medications that can be used for PS. They include central nervous system depressants such as midazolam, benzodiazepines, lorazepam, and pentobarbital. Most of these medications are administered intravenously. Another common formulation known as a hospice suppository contains metoclopramide to prevent gastrointestinal distress, diphenhydramine to dry up secretions, morphine sulfate for pain, lorazepam for anxiety, and haloperidol for delirium. These suppositories are inserted rectally every 3 to 8 hours as needed and are often a preferred method for home use. A recent study exploring trends in the use of palliative sedation in one European country indicated that the frequency with which PS is used at end of life decreased from 14.5% in 2007 to 12.0% in 2013.86 A retrospective study of 374 patients receiving tertiary care for terminal cancer indicated that 203 (54.2%) received PS. Interestingly, the patients who received PS had a significantly longer survival period than patients who were not sedated (33 days vs. 16 days, respectively).87 However, other studies comparing survival length between patients receiving PS with those who did not showed no significant differences.88,89 When a patient is undergoing PS, family members should be encouraged to talk to them and touch them.

Gentle massage can be helpful in assisting the letting-go process, and patients may respond with a change in breathing that suggests relaxation. Sometimes, patients may respond in other poignant and life-changing ways.

THE PHYSIOLOGICAL PROCESS OF DYING It has been stated that “we die of old age because we have been worn and torn and programmed to cave in. The very old do not succumb to disease, they implode their way to eternity.”90 As this quote suggests, advances in medicine have prolonged our lives so that the typical American death is most likely to occur in the old and very old from a chronic condition involving a period of physiological decline. Accordingly, the Centers for Disease Control and Prevention reported that of the 2,744,248 U.S. deaths that occurred in 2016, the five leading causes were heart disease (24.1%), cancer (22.7%), chronic lower respiratory tract disease (5.9%), unintentional injuries (5.6%), and stroke (5.3%).91 In fact, 75% of all American deaths occur from these or other chronic conditions. Although a slow and progressive deterioration can be disheartening for the patient to experience and challenging for the family to observe, a centered presence in the face of impending death optimizes opportunities for meaningful closure. Accordingly, patients can rally when least expected, often to fulfill one last important goal. For example, in the days before his death, Bill, a 70-year-old man with end-stage brain cancer, decided that he would leave his bed to have one last meal at the table with his family. Physical therapy services were requested and provided to help Bill carry out this goal. In other cases, patients may also linger in an unresponsive state for a period of time, dying shortly after a long-awaited loved one finally arrives. Joseph, a 72year-old man with liver cancer, died the day after his six adult children finally arrived from their locations around the country. The end-of-life process is unique for every individual. There are many different ways in which the journey to the end of life begins so that each person dies in his or her own unique way, and in his or her own time.5 Supporting this individual process is the purpose and focus of hospice care. In the context of hospice care, approaching death is viewed as a physical, psychological, and spiritual event. Patients and their families require information and compassionate support to ensure that their collective needs are honored during this critical time. The interdisciplinary hospice approach involves considerable involvement of the patient’s nurse, who will administer medications for comfort. The hospice chaplain may be involved for spiritual support at the request of the individual or family, especially when impending death provokes questions by the dying person or family members related to the presence of, or the prospect of, life after death. Trained hospice volunteers may provide caregiver respite or provide a reassuring presence at the bedside. The hospice social worker may assist the family in a number of

CHAPTER 27 practical ways, such as addressing financial concerns. Physical therapy interventions such as edema reduction, breathing exercises for relaxation, positioning, and gentle massage or stretching may be performed in the days or even hours before death. In one study exploring the feasibility of physical therapy interventions among 528 terminally ill patients, 90% of these patients received a variety of effective interventions that included physical activity (50%), relaxation training (22%), breathing training (10%), and lymphedema management (6%).48 A recent study examined the impact of physical therapy intervention among patients in a community hospice. The most prevalent symptoms included weakness, pain, edema, and breathlessness.45 The results of this study indicated that physical therapy intervention improved several elements of these patients’ function and symptoms. The most commonly reported benefit was a significant reduction in musculoskeletal pain, followed by improvements in performance of activities of daily living and mobility. Other reported benefits included improvements in endurance, mood, and energy. The most common assessment tool was the visual analog scale for pain, followed by varying measures of functional mobility, balance, and patient-reported quality of life. Common forms of intervention included functional skills training, breathing exercises, and manual therapy such as lymphedema massage. The following section includes a description of common physiological changes that accompany the death process, but it is important to note that these will vary among persons.

The Dying Process Physiological Changes Associated with Death. The dying process involves the decline and ultimate failure of all major organ systems. Depending on the nature of the contributory disease, this process may take anywhere from several months to several hours. Box 27.4 depicts the broader progressive changes that occur in the final months of life. As a patient declines in function, physical therapy intervention can be helpful in providing education, adaptive devices, or alternative movement strategies to optimize safe function. These interventions are fully described in the section on models of physical therapy practice in hospice and palliative care earlier in this chapter. Of equal importance to providing appropriate interventions is working closely with the hospice team to ensure that all forms of pain and discomfort are minimized. This is important not only for the patient but also for family members who, whenever possible, must be freed of the burden inherent in watching a loved one suffer. In the weeks or days before death, multisystem decline results in a host of signs, which are illustrated in Table 27.5 and further described in this chapter. It is very common for patients to sleep most of the time in the days before death. They may no longer be interested

BOX 27.4

Month 6

Month 5

Month 4

Month 3

Month 2

Final month

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Progressive Changes in the Terminal Phase Generally, patient is ambulatory, coherent, some adverse effects from curative measures/medications, initial stages of grief, anger, denial Some weight loss, weakness, symptoms manifested (i.e., pain, dyspnea, organic dysfunction), showing signs of stress, growing acceptance of terminal state, fear, depression Continuing weight loss, decreasing appetite, physical manifestations, symptoms more pronounced; grief work, planning, resolving Physical deterioration apparent, symptomatology and pain increase, beginning of withdrawal, acceptance of terminal disease Progressive physical deterioration, symptoms increase, pain management primary, may be bedridden, increasing withdrawal, resolution, and closure End stage: pronounced withdrawal, requires total care, intensive management of symptoms and pain, no appetite

(Adapted from National Hospice and Palliative Care Organization [NHPCO]. Time line phases of terminal care. 1996. Reprinted with permission.)

in food or fluid, and family members must be assured that for the dying person, the process of digestion can be uncomfortable or even painful. Furthermore, as death approaches, patients may have increased difficulty swallowing. Even in the absence of discomfort, dying patients do not need, nor can their bodies assimilate, the energy provided from food. When patients refuse food and fluids, or in cases where they are withdrawn in accordance with an advance directive, family members need assurance that the patient will not experience hunger or any sense of deprivation. In such instances, the hospice nurse will work with the patient and family to provide medications and other interventions to ensure optimal comfort. The ethical and legal aspects of intentional food and fluid withdrawal will be further discussed later in this chapter. “Terminal restlessness” is a specific form of delirium and agitation that occurs in the final weeks, days, or hours of life. It is very common, although the degree may vary greatly, affecting up to 85% of terminally ill patients, and includes signs such as restlessness, agitation, confusion, hallucinations, or nightmares.92 The experience of terminal restlessness can be highly upsetting for families and patients alike. One patient of the authors described his terminal restlessness as a feeling of “just wanting to crawl out of my skin.” Terminal restlessness is thought to be the result of failing metabolic processes occurring as death approaches. In addition, terminal restlessness may be exacerbated by physical distress from severe constipation, decreased oxygen exchange, or changes in body temperature. Thus, terminal restlessness could be described as a condition involving considerable physiological and psychological pain, occurring at all levels of consciousness. Unresponsive patients may demonstrate terminal restlessness by pulling

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TABLE 27.5

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Multisystem Physiologic Signs of Approaching Death

System

Sign or Symptom

Contributing Factors

Central nervous system

Confusion, delirium Disorientation Increased time spent sleeping (from a few hours a day to most of the day) Decreased levels of responsiveness, eventual coma Anxiety and restlessness, hallucinations or reports of seeing things, hearing voices Weakness, loss of function, fatigue Drop in blood pressure Heart rate variability and irregularity Breathing rate may be very rapid, alternating with periods of apnea, or very slow gurgling in chest Cool and clammy skin, distal extremities may be bluish Edema

Hypoxemia from disease process or decreased function, metabolic imbalances such as acidosis, toxicity from renal or liver failure, pain, adverse effects of opioid medication (this may be reversible)

Musculoskeletal Cardiopulmonary

Integumentary

Gastrointestinal

Loss of interest in food and fluid Constipation or diarrhea Incontinence, decreasing urine output as death approaches

at their bed clothes, making random movements, or attempting to remove their medical appliances. Patients who are more wakeful may repeatedly ask to get up or attempt to do so without help. They may talk about seeing and speaking with deceased friends or family members (e.g., a patient may sit up in bed and tell family members, “They’re coming!”). Understandably, the behaviors of terminal restlessness can be disconcerting for patients and families. Reassurance, support, and skilled pharmacologic intervention, often involving the use of sedating medications, are important measures that can reduce the duration and severity of these symptoms. “Active death” typically occurs in the final days or hours and involves observable signs of systemic failure.93 Terminal restlessness may increase. Respirations may become extremely irregular and include periods of very rapid breathing, followed by several seconds of apnea (Cheyne–Stokes breathing). Other types of irregular breathing patterns may occur as well, along with “death rattles” from congested and fluid-congested lungs. Urine output decreases significantly, and the urine may be dark. Blood pressure will often drop 20 to 30 points below the patient’s normal blood pressure range, with systolic pressure as low as 70 mmHg and diastolic readings as low as 50 mmHg. This lack of perfusion may result in extremities that are very cold, blue, or purple. Patients may also complain of numbness in their distal extremities. The patient may be unresponsive, or even comatose. Family members need to be assured that the patient hears them as hearing is one of the last senses to fail94 and thus should be encouraged to talk to their loved one even if they do not receive a response. In contrast, other patients may be relatively wakeful and able to converse with family members almost to the moment of death.

Progression of disease process, prolonged inactivity Disease process, organ failure, adverse effect from chemotherapy (not reversible) Respiratory failure may result in fluid accumulation in lungs Loss of cardiovascular perfusion Pump failure Loss of muscle tone Adverse effects of medications (opioid medications are constipating)

As stated previously, dying is not only a physical event, many patients experience significant psychological and social signs as well. Table 27.6 illustrates the spectrum of these, along with their possible causes and helpful interventions. One of the many benefits of hospice involvement is the preparation of the patient and his or her family about the signs and symptoms related to the death process. Such preparation dispels inaccuracies (i.e., death is painful), reducing fear, regret, and guilt over not doing enough for their loved one. Most of all, skillful management of death-related discomfort allows the patient and family to be comfortably and lovingly present to each other throughout the process. Finally, when a loved one dies peacefully in the manner of a “good death,” family members can focus their grief on mourning their loss and finding comfort in their memories. Nearing Death Awareness. A variety of altered mental states may be experienced as the end of life approaches. The “out of body” experience has been reported after brushes with death, such as an accident.93 Others have reported incidents of knowledge of things that they attribute to awareness of another dimension.94 All of this work recognizes the mystery that surrounds the dying process, which exceeds the physical indicators that medical professionals can use to quantify the ceasing of life in the body. Callahan and Kelley70 recommend from their years of working with individuals during end-of-life experiences that clinical caregivers as well as family members learn from close listening and observation of the person in their care. Caregivers who do not have an understanding of this communication may experience more anxiety. The dying person may speak in metaphoric language. For example, imagine this dialogue between a mother

CHAPTER 27 TABLE 27.6

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Psychosocial and Spiritual Signs, Symptoms, and Interventions of the Actively Dying

Signs and Symptoms

Cause/Etiology

Interventions

Fear of the dying process. Fear of the dying process may be greater than the fear of death.

Cause of fear will be specific to the individual. Fear of the unknown: how the person will die, what will happen during the dying process. Fear of painful death and suffering such as breathlessness, physical pain, loss of mental competence and decision-making ability, loss of control, loss of ability to maintain spiritual belief systems and faith. Fear of judgment, punishment related to guilt, and subsequent pain and suffering during the dying process. Fear of being alone. Fear of who will care for the person when he or she is unable to care for him- or herself.

Explore fears and cause/etiology of fears, including physical, psychosocial, and spiritual. Educate patient and family on physical, psychosocial, and spiritual signs and symptoms of dying process. Ask patient/family how they would like the dying process to happen. Normalize feelings. Provide reassurance that patient will be kept as comfortable as possible. Provide presence and increase as needed.

Fear of abandonment. Most patients do not want to die alone. May present as patient anxiety, pressing call button frequently, or calling out for help at home. Family members may continuously stay at bedside to honor patient wish to not be left alone.

Fear of the unknown.

Nearing death awareness. Patients state they have spoken to those who have already died or have seen places not presently accessible or visible to family and/or nurse. May describe spiritual beings, bright lights, “another world.” Statements may seem out of character, gesture or request. Patients may tell family members, significant others when they will die. Withdrawal from family, friends, the nurse, and other health care professionals: decreased interest in environment and relationships; family may feel they have upset or offended patient.

Fear of what will happen after the person dies: afterlife or cultural/faith system beliefs in relation to death. Fear that belief systems regarding afterlife will be different than perceived and/or lived. Attempt by the dying to describe what they are experiencing, the dying process, and death. Transitioning from this life. Attempting to describe something they need to do/accomplish before they die, such as permission from family to die, reconciliation, see someone, reassurance that survivor will be okay without them.

Transition from this life, patient “letting go” of this life.

Provide reassurance that everything will be done to have someone with the patient. Provide presence. Explore options for increasing presence around the clock, including health care professionals (nurse, social worker, nurse’s aide) and family, friends, volunteers, church members, etc. For family member doing bedside vigil, encourage frequent breaks; offer respite. Family members may also be anxious and need permission from nurse to care for themselves. Assist in exploration of fear. Provide companionship, presence. Offer pastoral care or patient’s clergy for exploration of life, afterlife, faith system beliefs. Support cultural and faith system beliefs. Do not contradict, explain away, belittle, humor, or argue with the patient about these experiences. Attentively and sensitively listen to the patient, affirm the experience, and attempt to determine if there is any unfinished business, patient needs. Encourage family/significant others to say goodbye, give permission for patient to die as appropriate. Support family and other caregivers. Educate about the difference between nearing death awareness and confusion, education to family, and other caregivers. Normalize withdrawal by educating family about transition. Provide presence, gentle touch. Family members may need to be educated, encouraged to give permission to patient to die. Family may need to be encouraged to say goodbyes.

(From The Hospice of the Florida Suncoast, 1999. Reprinted with permission.)

and daughter. “I need to go home,” states the older patient. “Mom, you are home. This is your house. See the family photos on the mantle above the fireplace, and there is your favorite chair,” replies her daughter in frustration after several repetitions. Could there be another sense of home to which she is referring, perhaps even a spiritual resting place consistent with her lifelong beliefs?

Another example of misinterpreting metaphorical speech would be this hypothetical conversation between a father and son. “The door is locked,” declares Mr. Thompson emphatically as he arouses from a lethargic state. His family is glad to hear him communicate. Son Robert steps from the bedside to the sliding glass door across the room. “No, Dad. Look, the door is open,”

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he responds as he demonstrates the sliding door out to the patio moving freely. Perhaps there is some unfinished business Mr. Thompson needs to address, or it is his way of indicating that he does not believe he is ready to die. Patients will commonly report seeing things that are not visible to others. Insects, reptiles, or other animals may be reported as hallucinations related to the introduction or dosing changes of opioid medications, but the visualization of people is worth exploring. Often these may be recognizable to the dying individual as previously deceased friends or family members, who are perceived as calling and communicating in some way with the dying person. Understanding this as a relatively common but often unacknowledged experience, perhaps because of a societal reluctance to grapple with complex metaphysical issues, may provide recognition that this is a normal endof-life process occurring and afford some individuals comfort that the dying loved one will not be alone after passing away as may be consistent with their personal beliefs. Other patients may voice their beliefs about the timing of their deaths in ways that may not seem to coincide with apparent physical parameters. The insights offered by those in our care offer us an opportunity to support their caregivers and loved ones in helping meet the desire to have a peaceful death. By listening carefully, then recognizing such communication, physical therapists can educate family members, allowing them to become more intimately involved in this experience of accompanying their dying loved one and preparing for their own time of bereavement.

CULTURAL ISSUES WITH ACCEPTANCE OF DEATH A consideration in the acceptance of the dying process is the diverse cultural backgrounds of patients and families. It is incumbent that the therapist is sensitive and aware of the cultural norms and desires of the clients being served.95 Expressions of pain vary significantly across races and ethnic groups.96 Concurrently, the social roles during illness can have a significant impact on goal setting, intervention, and the desire or expression of success or independence.97 Attitudes about the language that health care providers use in discussing the condition and possible outcomes, the use of metaphors, and considerations of death are other topics that should be understood.98 Historically, the hospice philosophy evolved in nations such as England and France; subsequently, HPC has proliferated to regions that had historical or colonial ties to these nations.99 Patients and families that are more familiar with the HPC care philosophy may be more willing to consider and accept HPC care tenets; however, individual or family preferences still have a strong influence. Making death a clinical, medical matter often does not keep with many cultural or religious traditions.100 Relatives may request traditional healers to try to elicit a cure

or relatives may explore facilitating death at home or a sacred location as well as visitation by extended family and friends. Examples of good practice before death include providing privacy for prayer, respect and care for sacred texts or icons, and gender-sensitive patient care providers for selected procedures.99 Even the concept of a “good death,” though generally accepted in Western nations, varies significantly in other continents or nations, including the belief of the causes of death and illness.49 Behaviors and expectations may be influenced by customs and traditional healers as opposed to Western medical care. These differences in practices present barriers but also opportunities for alliances between HPC practitioners, physical therapists, and traditional healers. As the history and evolution of HPC concepts has followed the proliferation of a Western-hemispheric, Christian growth pattern, there is value in exploring how all religions and cultures approach this concept.101 Gatrad and Sheikh100 highlighted challenges when discussing any large heterogeneous group, such as those who follow Islam. They noted that the more rooted an individual was within the local culture or religion, the more it was felt that the family should be the ones to look after the ill, but those individuals who had exposure, had schooling, or lived in a Western culture were more open to having external assistance caring for the terminally ill. Many families do not wish their dying relative to be informed of the prognosis as the family may be concerned about a “loss of hope.” These may create challenging ethical conflicts between a well-intentioned health care provider who may feel this was a violation of an individual’s right to autonomy and the relatives’ rights to care for their loved one in a culturally and traditionally appropriate fashion. Culture, religion, and spirituality tend to play an increased influence on provision of HPC care (including physical therapy) in end-of-life situations and physical therapists must anticipate these issues and work closely with the patient, family, and interdisciplinary team to best provide for patient-centered, culturally sensitive care to optimize remaining quality of life and a good death.9

CONFRONTING THE REALITY OF DEATH Being comfortable with dying is a challenge for many therapists and individuals because of the limited exposure during our training and clinical practice, and the nature of modern culture. The process of understanding the meaning and nature of death, then being able to speak of living and dying with comfort and ease, takes time and practice through repeated exposure and experience. This development can occur through reading, conversations with professional peers, and eventually during work with people approaching the end of life. This section will introduce conversation topics that arise in clinical settings and promote adjustment to the dying process. Decline, if not reversible, will lead to death. Fully understanding the universality of death as more than an

CHAPTER 27 abstract concept can make us open to the possibility of improvement, maintaining a functional level, or further decline and death during the course of clinical care. Death is not failure by the patient or the therapist, but the natural course of life. The ability to give voice to this natural event as it occurs during the process of care can provide a sense of understanding that will support the coping of patients and family members. Death is an experience fraught with an array of emotion. Patients often have limited experiences with death during their lifetimes and may find themselves struggling with unfamiliar circumstances and feelings as their conditions progress. How health professionals address the events that occur at the end of life can offer support and understanding to allow the completion of this process with less distress and better understanding. Patients and family members have identified geriatric and oncologic medical care that includes physical and intentional presence, developing an understanding of their individualized experience, and maintaining the patient’s humanity and dignity, as essential to their spiritual well-being.102

Reframing Physical Loss and Dying Loss and suffering are a natural, albeit unpleasant, part of the dying process. Often there is a component of significant physical loss such as the inability to walk, stand, or even get out of bed during this experience. The physical therapist can use clinical observations made during initial examination or ongoing assessments to affirm the person’s maximal efforts at mobility and function in light of a progressive or deteriorating condition. Understanding these losses can change the aspects of suffering that are then experienced and one can discover a meaning to life by the attitude taken toward this unavoidable suffering.103

Spiritual Awareness In the past century, perhaps because of the advances of medicine, emphasis has been on the physical changes that occur as the body deteriorates in the process of dying rather than on the spiritual changes with dying, as in past centuries. Previously, societies have examined death as a spiritual event and created treatises such as the Christian Ars Moriendi or “Art of Dying”104 and the Buddhist Tibetan Book of the Dead.105 Evidence of spiritual well-being is found to improve coping with terminal illness.106,107 It is important that members of the IDT meet the spiritual needs of patients and families receiving hospice care, even if their spiritual/religious tradition or beliefs differ from one’s own.108

Dealing with Death and Dying In physical therapy practice of aging adults, it is common to provide care to individuals who are facing death either

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imminently or in the not-so-distant future. Many physical therapists’ first experience of death is with an older patient with whom they have grown close through the therapeutic relationship. When confronted with the inevitability of the patient’s death, a physical therapist may feel anxiety or feel incapable of coping with such a situation.108 A common and natural emotional reaction is fear that can be perceived by the patient from the therapist’s body language and facial expression as pity.109 The therapist’s recognition that death is inevitable and naturally occurring can bring about a freedom from the fear and a recognition that everyone has choices in how one’s days can be lived. Listening to the patient with empathy and unconditional positive regard is a way of communicating compassion109 without using nonsensical statements such as “I know how you feel” (you don’t) or “It will be all right” (it may not) or worse, “You shouldn’t feel that way” (why not?). To provide compassionate care by being present to the dying individual, health professionals must face their own fears of loss, suffering, and death. To be effective, physical therapists need to recognize their own as well as the aging adult’s feelings, have a sense of their strengths and weaknesses, and be aware of their thoughts and feelings about death and dying, as these may all have an impact on how care is provided. Awareness that any discomfort the therapist feels is a personal reaction and may not be shared by the older adult who is at the end of life can help the therapist with appreciating the continuity of life.

Unfinished Business Often, the older patient may be comfortable with death, even anticipating it as a means of meeting a spouse or other loved one who predeceased him or her. However, the patient’s family may still be resisting the finality of death and may express discomfort as wanting more therapy, pushing the patient to do more, to not give up, and so forth. This lack of acceptance of the loved one’s death may be a result of unfinished business. Clinically this can be addressed through using the various practice patterns identified earlier in this chapter to sustain a sense of hope rather than the abandonment that may be felt from a discharge from having “failed” therapy. The personal issues of unfinished business can be addressed as well. Unfinished business has been identified by Elizabeth Kubler Ross110 and others111 as tasks and relationships that need completion or resolution before the end of life, or to get through any difficult situation. Byock112 has outlined four communication tasks of the dying and their families: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.” Offering these words of goodbye may help families find closure. Being in the presence of those close to the end of life and struggling with their own issues of pending loss will in many cases bring to the level of awareness of the family and/or practitioner feelings and emotions related to their own past or anticipated life losses.

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Being able to process and resolve one’s own personal issues of unfinished business is a healthy and life-affirming process that is recognized as anticipatory grief for patients and families. Patients can be teachers to therapists as well. Those at the end of life may report increased comfort and peace as this occurs. They may report a clarity and meaning in life that was not evident previously. For the health and well-being of physical therapists as end-of-life caregivers, reflection around such issues can promote more effective listening ability and long-term work satisfaction. Most hospice workers have a spiritual belief system, which may not be connected to an organized religion or be well defined, but consist of some belief in something beyond the self, some way of making meaning of the world and life.113 Patients and families can be guided to access their own religious or spiritual support system, or that of the hospice program, to cope with the realities and unknown of death.

SUMMARY End-of-life care is a challenge for both the new and experienced physical therapist. Clinical expertise is developed through an ongoing practice of reflection and mindfulness.114 Knowledge of aging and disease processes, pain and symptom management, and the different patterns of care used to support a palliative care approach is essential. Understanding the physical therapy role within the hospice interdisciplinary team approach is important for successful practice integration. Personal exploration of one’s own feelings and issues with loss, grief, and death is necessary to maintain personal health while providing the best intervention and support to individuals as they die.

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