End-of-life care in the critically ill geriatric population

Crit Care Clin 19 (2003) 789 – 810

End-of-life care in the critically ill geriatric population Richard A. Mularski, MD, Molly L. Osborne, MD, PhD* Division Pulmonary and Critical Care Medicine, Oregon Health and Science University, 3181 S.W. Sam Jackson Park Rd., L102, Portland, OR 97239, USA

As the geriatric population in the United States (US) increases and better management of chronic diseases improves survival, more elderly will become critically ill and potentially require treatment in an intensive care unit (ICU). Dan Callahan has written, ‘‘. . .we will live longer lives, be better sustained by medical care, in return for which our deaths in old age are more likely to be drawn out and wild’’ [1]. Although no health care provider hopes for a drawn out and wild death for elderly patients, many geriatric persons will succumb to disease and die after having chosen and received ICU care. Recent data suggest that, on average, 11% of Medicare recipients spend more that 7 days in the ICU within 6 months before death [2]. In the US, more than 50% of ICU beds are filled by elderly patients [3– 5]. However, the ICU is an intervention, not a therapy nor a cure. ICU technology can sustain life long after it has meaning to the patient or their family. As Luce and Prendergast point out, there is an evolution in medical practice toward a more active role in managing the deaths of critically ill patients in the ICU [6,7]. Specialists who care for critically ill patients must also be specialists in the management of dying and death. This article addresses the knowledge base and skills that physicians need to guide the appropriate use of ICU technology in the elderly and facilitate peaceful and dignified dying in those who have no further benefit from that technology. We will specifically address: (1) which elderly patients might benefit from ICU care; (2) costs of ICU care; (3) principles of palliative care and an interdisciplinary model for the ICU; (4) ethics of end-of-life care in the ICU, (5) communication in the ICU: assessment of decisional capacity, informed consent, goal setting, transitions to EOLC, and family conferences; (6) a good death; holistic issues such as patient and family support methods; and (7) withdrawal of life support with

* Corresponding author. E-mail address: [email protected] (M.L. Osborne). 0749-0704/03/$ – see front matter D 2003 Elsevier Inc. All rights reserved. doi:10.1016/S0749-0704(03)00056-3

790

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

a specific focus on withdrawal of mechanical ventilation. Several important topics in palliative care including pain management, anxiety, delirium, depression, and multicultural aspects of palliative care have been omitted from this article, because separate articles in this volume are devoted to these topics.

Which elderly patients might benefit from ICU care? Despite the risk for the elderly to have progressive and unmitigable disease that leads to prolonged dying, there exists neither a rational nor a systematic way to set limitations on geriatric admissions to the intensive care unit. In fact, more than one-half of ICU beds are filled by the elderly and the proportion continues to rise [3– 5]. Studies of elderly patients generally show no significant differences in outcomes based solely on age [4,5,8 – 15]. The majority of elderly survivors of ICU stay return home to independent living and attain functional status as good or better than before admission [16]. The preference of patients to undergo intensive care is similarly not influenced by age, severity of illness, length of stay, cost of care, or even modest or poor prognosis [17,18]. Patient preferences often do not set limits on ICU care. People faced with critical illness will often choose a chance for survival that ICU care may offer even when the odds for benefit are low and the burdens of treatment high. Of patients age 55 years or older with prior ICU stays, 70% of patients and their families said they would be willing to undergo intensive unit care for even a marginal survival benefit of only 1 month. The preferences expressed were without correlation to patient’s functional status or quality of life in 82% of those surveyed [18]. Yet, despite optimal medical management, elderly patients have an overall 25% ICU mortality risk [15,19 – 22]. Hospital mortality varies widely from 20% to 50% [8,16,19,23]. The rate of dying in an ICU is higher with chronic disease, and may increase with increased age [24,25]. Despite survey data that show a preference for dying at home, patient preferences favor inclusion of ICU care when medically indicated. Indeed, upwards of 50% of the elderly can expect to die in a hospital, the majority with ICU care [22,26 – 29]. Most of these deaths will include limitations on treatment and active end-of-life care management [6,30]. The uncertainty in prognosis is a likely explanation for the large population of elderly patients admitted to the ICU. The SUPPORT trial (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) demonstrated the difficulty in predicting mortality outcome for individual patients. In this study, the median predicted chance of survival for 2 months was 51% for patients 1 week before death and 17% on the day before death [31].

Costs of ICU care The cost of ICU care is significant. Of the $989 billion spent in 1995 on health care expenditures (14% of GDP), $70 billion was for ICU care. A dispropor-

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

791

tionate share of Medicare costs are attributable to care of elderly shortly before death [2]. Specifically, 6% of Medicare recipients age greater than 65 years of age account for 28% of all Medicare costs; 77% of expenditures occur in last year of life, 52% in last 2 months, and 40% in last month. Experts suggest that although changes in the use of ICU care at the end of life and efforts to reduce suffering are of benefit, they are unlikely to yield significant cost savings [2].

Principles of palliative care and an interdisciplinary model for the ICU The goals of medicine, to restore health and to relieve suffering, play out differently in the fast-paced setting of an ICU than in the comfort care-focused home or hospice setting. In the ICU, focus on support of vital organ function and attempt at cure has led to aggressive use of interventions. Hadorn has described the ‘‘rule of rescue,’’ the powerful human tendency to act to save endangered life [17]. This human desire to preserve life has led to a technologic imperative that implies that available techniques be used, when even small chances of cure are possible. However, the relief of suffering is not lost in the practice of intensive care medicine. Within the setting of providing an opportunity for healing and cure, the challenge of palliation and transition to end-of-life care remains important. The hospice model is often felt to be fundamentally different from the approach of care in an ICU. Hospice care focuses predominantly on assuring comfort and addressing the multifaceted needs of a dying patient and the family without striving to extend life or cure disease. However, by looking at how hospice providers and organizations have evolved to best care for patients and families at the end of life, practitioners in the ICU can gain insight into how to facilitate end-of-life care in parallel with attempts at curative care. Society has responded to the institutionalizing of birth with the demand for a more individual approach to the birthing experience, including a variety of options for delivery and personalized birthing rooms. It should be expected that a similar approach will emerge for the critically ill, such as specialized dying rooms and dying teams for hospitalized patients, that allow for a unique and family-focused development of meaning, a more gentle closure, and, hopefully, a more dignified death. The skills and approaches that have been developed in hospice are applicable to all patients and families making the transition to end-of-life care, even if bound by their acute medical needs to a hospital or ICU bed. The model that has evolved in hospice has specific insight, not solely through its guidance in palliative techniques and skills, but by providing a conceptual, multifaceted way to organize and administer care. To achieve a goal of diminishing suffering, hospice must address not only physical pain, but suffering in psychosocial, spiritual, transcendent, and personal domains. To address multiple tiers of suffering, hospice has evolved an interdisciplinary paradigm that uses a diverse set of individuals to nurture and aid the dying patient and his or her family (Fig. 1) [32]. The key to the success of the team, and arguably contrary to the traditional organization of inpatient medicine, separate

792

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

Fig. 1. Members of an interdisciplinary team. (From Ajemain I. The interdisciplinary team. In: Doyle K, Hanks G, MacDonald N, editors. Oxford textbook of palliative medicine. 1st edition. New York: Oxford University Press; 1993. p. 18; with permission.)

team members must be willing to subordinate their individual agendas to function as a unified group, accepting and enmeshing the contributions of other team members [33]. The patient and family are considered as central members of this team as it is their unique life experience and response to illness that determine the goals and plan of care. Another subtle but important aspect of this organization is its ‘‘interdisciplinary’’ nature, implying a distinction from ‘‘multidisciplinary’’ where there may be a less unified mission and a more hierarchical structure whereby leadership falls to professional identities. The team approach enhances ethnocentric and personal interaction to better identify problems of importance to the patient and facilitate the journey to the end of life. The members of the interdisciplinary team include, but are not limited to the patient, family members, friends, volunteers, social workers, physical therapists, occupational therapists, pharmacists, dietitians, dentists, art/music/diversional therapists, bereavement counselors, psychologists, speech therapists, chaplains,

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

793

geriatric specialists, nurses, and physicians. The coordination for the patient’s care plan often falls primarily to the social workers and nurses, whose evaluative skills complement each others’. By having these health care providers with the most immediate patient contact direct the team, a more efficient system is created and identification, prioritization, and coordination for the other interdisciplinary members occurs. Inherent in the team approach is the routine meeting of its members in care conferences. The team meeting facilitates continuity and allows for assessment of how well a care plan matches a patient’s goals and preferences. Further, there is time for remembering those who have died and supporting the grieving process of providers. This model can be adapted to the inpatient and ICU settings to improve coordination and continuity of care throughout a hospitalization and, especially for the chronically ill elderly patient, into discharge, be it to a care facility, through rehabilitation to home, or into hospice. One of the best ways to functionally address and incorporate palliative medicine and end-of-life care into the ICU is with a systematic approach at the time of admission. We have previously described four phases in end-of-life care in the ICU that are useful in understanding the journey of the patient, family, and caregivers as they move from hope for and attempt at cure, to recognition of the risk for prolonging the dying process, to withdrawal of unwanted or disproportionately burdensome therapy with a focus on palliation and comfort care (Box 1) [34]. The admission begins with clinical uncertainty and the crucial need to

Box 1. Four phases of ICU management from curative to comfort care I. TRANSFER—focus on checklist, goals for ICU admission, advance directives, surrogate decision maker, and patient preferences II. LIFE-SAVING TREATMENT—aggressive curative care (including identification and palliation of symptoms) III. HOLISTIC CARE—clarify trajectory/prognosis, reassess and attend to wishes, focus on issues like nutrition and hydration, aggressive symptom management, attend to family and psychosocial issues IV. PALLIATIVE CARE—comfort care and withdrawal of therapies/interventions, attention to patient and family comfort and end-of-life needs, attend to grief and bereavement of family and care team Adapted from Mularski RA, Bascom P, Osborne ML. Educational agendas for interdisciplinary end-of-life curricula. Crit Care Med 2001;29(2 Suppl.):N21; with permission.

794

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

delineate the goals of therapy in the first phase (transfer). The second phase (lifesaving treatment) involves standard ICU life-saving and curative treatments. A third phase (holistic care) allows the trajectory of the illness to be better understood and for prognoses to become clearer while whole patient care needs are addressed. For the dying patient, the fourth phase (palliative care) evolves to a focus of comfort care and withdrawal of unwanted and burdensome treatments. It is the rigorous application of a checklist in the first phase, the initial admission or transfer to the ICU, that lays the groundwork for palliation and adherence to a person’s goals and wishes (Box 2). Here, the goals for admission are discussed among the interdisciplinary team described above, including the patient, the family, the transferring care team, and the primary provider. An investment of time and energy early on can help to focus the interdisciplinary team and identify important patient and family values and needs. It can also open the communication channels to make subsequent transitions easier and smoother. Determination and documentation of advance care planning, identification of symptoms, inquiry into psychosocial and spiritual needs, and setting a time frame for reassessment and subsequent team and family meetings will facilitate palliation and avoid harried determinations later if the clinical condition deteriorates. It should be stressed that palliation and attempts at curative interventions are not mutually exclusive, and attention to symptom assessment and alleviation should occur throughout the continuum (Fig. 2) [35]. This model is valuable in the ICU survivor as well as coordination, and continuity can occur into discharge and serve to prepare the family and chronically ill elderly patient for the future

Box 2. Checklist for transfer of a patient to the ICU 1. Discuss and document goals of care and likely outcomes, prognosis, and roles for members of the interdisciplinary team 2. Discuss and document advance care planning, do not resuscitate orders, determine patient decisional capacity, identify surrogate decision makers, inquire into particular preferences 3. Identify symptoms and treatment plan for palliation—pain, dyspnea, anxiety, etc. 4. Address psychosocial and spiritual needs of patient and family 5. Establish open communication and time family conferences 6. Attend to family dynamics and cultural issues Adapted from Mularski RA, Bascom P, Osborne ML. Educational agendas for interdisciplinary end-of-life curricula. Crit Care Med 2001;29(2 Suppl.):N21; with permission.

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

795

Fig. 2. Palliative care within the experience of risk, illness, and bereavement. (Courtesy of Frank D. Ferris, MD, San Diego Hospice, San Diego, CA.)

possibility of readmission or alternative care decisions. It is important for the ICU provider to facilitate subsequent decision making and the ongoing dialog regarding the goals and preferences of a patient.

Ethics of end-of-life care in the ICU The field of bioethics has evolved during the 1960s –1980s, in large part as a response to the application of new technologies in the ICU [33]. A number of comprehensive reviews of ethical constructs and their application to ICU medicine have been published [35 – 39]. In this section, we will briefly review ethical principles as they apply to communication and withdrawal of therapies. Ethical behavior has traditionally been guided by four main principles: (1) nonmaleficence—the avoidance of harm, (2) beneficence—the concept of doing good such as preventing or curing disease, (3) autonomy—respect for the individual and the right of self-determination, and (4) social justice—the fair distribution of resources. In ethical conflicts, the Western world has supported respect for persons and autonomy in health care decisions [37]. The 1983 report by the President’s Commission for the Study of Ethical Problems in Medicine (Deciding to Forego Life-Sustaining Treatment) offers

796

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

several traditional moral equivalencies that are useful for the practitioner in withdrawal (discontinuing a therapy that has disproportionate burden without achieving reasonable clinical goals) and withholding (not initiating a therapy that meets the same criterion) [40]. First, heroic and ordinary treatments are held as equivalent, that is, the ordinary versus extraordinary nature of a therapy should not determine whether a patient may accept or decline its application, but rather, the proportionality of its benefit and burden should guide its use. The weighing of benefits and burdens requires framing interventions in terms of the patient’s experience and his or her goals for treatment. Second, withholding a treatment is viewed as equivalent to withdrawing an intervention, that is, the distinction between failing to initiate and stopping therapy is artificial in that a justification that is adequate for not commencing a treatment is sufficient for ceasing it. Although family members and caregivers may feel discomfort with withdrawing a treatment once begun, the legitimate moral claim of equivalency to withholding can help all parties understand and accept the action as humane and appropriate. Last, the principle of the double effect aids in ensuring adequate palliation while differentiating clinician actions from active hastening of death. The doctrine of double effect makes a distinction based on the intent of an action. In using medication for the alleviation of pain and other symptoms, the expected negative consequence—that palliative medications may have side effects that hasten a patient’s death—is justified by the benefit of relief of suffering, as long as the sole purpose is alleviating suffering, not in poisoning or killing a patient.

Communication in the ICU As death becomes increasingly managed through limitations on treatments and withdrawal of life-sustaining therapies, effective communication becomes ever more important to understand patient’s preferences and negotiate the difficult emotions that the family and care team experience [30,41]. Conversations about death and dying in the ICU are difficult for many reasons. Communication with the elderly may be complicated before critical illness and ICU admission by multiple factors such as sensory deficits and cognitive impairment [5,16]. In the ICU, the creative use of nonverbal aids such as word boards and consultation with speech pathologists can improve the end-of-life care through the simple restoration of effective communication. Particularly in the ICU, effective communication requires a trusting relationship between the provider and the patient where issues of dependency, anxiety, vulnerability, pain, and confusion may further complicate the process. Care must be taken to avoid complicating factors such as sensory deprivation or overload, the myriad causes of delirium, and ‘‘medicalizing’’ the person in the ICU bed leading to the experience of dehumanization. Often, the family becomes the focal point for conversations regarding end-of-life care. Providers must be sensitive to the family’s emotions and the need for the frequent provision of information and compassionate care.

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

797

Assessment of decisional capacity and informed consent Only a small minority of patients are able to communicate with clinicians at the time of limiting treatments [42]. The care team must be adept at determining when a patient has decisional capacity and at applying the informed consent process to end-of-life decisions. These determinations require specific skill sets that a health care provider must learn. Decisional capacity is a medical determination, made for a particular situation and at a particular point in time. Capacity determinations may be different at another time or wax and wane with the clinical condition. Certain situations with more serious outcomes demand more stringent tests of capacity. Decisional capacity determinations are based on four key aspects [43,44]. A person must possess the ability to (1) understand the relevant information and the decision at hand, (2) appreciate the significance of the decision and relate it to his or her own life, (3) reason through the options and potential outcomes of a decision, and (4) make and articulate a choice. The determination should be made in conjunction with the process and dialog of informed consent (Box 3). When the patient lacks decisional capacity, a surrogate, usually a family member or designated legal agent for health care determinations, should be held to these same standards. A surrogate is asked to apply substituted judgment, that is, promote the patient’s wishes and express the beliefs that the patient holds. By asking, ‘‘what would your loved-one do in this situation?’’, the surrogate is encouraged to act as an advocate by being a voice for the patient. The distinction of substituted judgment is important not only to maintain the ethic of patient autonomy, but also to avoid the implication that a loved one is being asked to ‘‘pull the plug.’’ The loved one should not be burdened by the question of deciding to end the patient’s life, but rather should be comforted in having advocated for the patient’s interests in avoiding prolonged suffering.

Box 3. The process of informed consent 1. Determine decision-making capacity 2. Discuss the context of a decision, that is, diagnosis/ procedure 3. Review alternatives including no treatment 4. Discuss risks and benefits 5. Review the uncertainty with the diagnosis and prognoses 6. Offer opinion and recommendations 7. Query the understanding of the patient 8. Discuss and try to answer questions 9. Elicit a preference 10. Document the discussion/process (write a note and have the patient sign a form)

798

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

Goal setting and transitions to end-of-life care Communication in the ICU regarding end-of-life care is a problematic area on many tiers [22,45]. Key aspects that can be improved include goal setting and the transition to end-of-life care. The use of a systematic checklist (Box 2) can initiate the process and facilitate well-timed family conferences and ongoing discussion. As the proportionate burden of therapies increase, the patient’s wishes for therapy and outcomes become more relevant. The expressions of patient preferences can be formulated into therapeutic goals, for example, discharge to home, surviving to a particular event, being able to communicate and say goodbye, or achieving a more rapid and certain death. Treatment decisions can be facilitated by moving away from a tactical approach of concentrating on medical problems and singular interventions to a more strategic approach where therapeutic goals guide discussions and the plan of care [46,47]. Instead of treating organ systems and pathophysiology, the clinician focuses on the person. The plan of care should include setting a specific interval of time to the next reassessment where one reviews whether interventions are continuing to meet the therapeutic goals. The clinician must develop the ability and skill to compassionately conduct a family conference to negotiate this process. Family conferences Frequently, the family conference is critical to decisions regarding end-of-life care, increasing the understanding of the goals of treatment, and weighing benefits and burdens of therapy. The family conference must be approached with planning and expertise as with any other procedure embarked upon in the ICU. Guides and skill sets have been well described in the literature [42,45]. The discussions require preparation and participation by key people in the interdisciplinary team. The following discussion is organized on a temporal line to describe steps and actions that improve the effectiveness of a family conference (Box 4). Actions by nursing before a conference Nurses have the most continuous and intimate contact with the patient and family, and can enhance the effectiveness of a conference by preparing the family and addressing issues of concern beforehand. The explanation of equipment and therapies, prompting what to expect from the conference, asking the family to reflect on their story, and setting up an appropriate place for the conference can improve the efficacy and set the stage for a successful conference. Preparation The clinicians need to review the relationships, attitudes, and data before a conference. To present a united care plan, the clinician who conducts the conference should coordinate the members of the interdisciplinary care team

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

799

Box 4. Family conference in the ICU Goals 1. 2. 3. 4. 5. 6.

Foster effective communication Foster understanding of disease and prognosis Examine and understand wishes and goals of patient Reassure appropriate therapy and palliation Interdisciplinary team coordination Advancing end-of-life care

Nursing input 1. 2. 3. 4. 5. 6.

Explain the equipment and therapies Explain what to expect from the conference Talk/address spiritual or religious needs Talk/address values and feelings Allow the family to reminisce—tell the story Prompt discussion of what the patient might have wanted if he/she could participate 7. Locate and schedule a private place

Preparation 1. 2. 3. 4. 5. 6. 7. 8.

Review knowledge of patient and family Review knowledge of attitudes and reactions Review knowledge of disease, prognosis, therapy Review the opinions, beliefs, and prior conversations of consultants/interdisciplinary team Examine your own personal beliefs Ensure setting—private, quiet, interdisciplinary Ask the family who should be present Arrange pager coverage/minimize disturbances

Setting the stage 1. 2. 3. 4.

Introduce everyone present—define spokesperson Set tone ‘‘. . .conversation we have with everyone . . .’’ Review meeting goals Establish ground rules (for anticipated confrontation or discordant parties—involve a patient advocate/negotiator) 5. Find out what the family understands

800

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

6. Review what has happened/clarify medical aspects 7. Discuss prognosis frankly: answer questions, avoid too much jargon, acknowledge uncertainty, do not discourage hope, support the family

Moving to comfort care 1. 2. 3. 4. 5. 6.

Substituted judgment—what would the patient want Use questions and provide options Redirect to comfortable death with dignity if appropriate Avoid implying that family is making a decision to kill Ask for consensus and examine values/motivations Clarify that withholding or withdrawing treatment is not withholding care 7. Describe how care at end-of-life might go—symptom management and how dying may look 8. Tolerate silence and telling of story 9. Acknowledge strong emotions—use reflection 10. Reiterate what family says, show you understand

Closure 1. Achieve a common understanding—even if that is only to schedule another meeting, note disagreements 2. Identify other resources, for example, minister, ethics committee, other physicians, comfort care team, patient advocate 3. Summarize and schedule follow-up and contact individuals 4. Caution against unexpected outcomes and developments 5. Thank family members and express gratitude for their involvement in their loved one and our privilege in taking part in this intimate time of their loved one’s life 6. Encourage family to take care of themselves and each other 7. Encourage focusing on goodbyes while allowing hope

Nursing after 1. Talk with the family about how it went 2. Ask if there are any questions or disagreement 3. Explain any changes in patient care plan as a result and explain details as desired 4. Assure comfort and dignity 5. Reassure that it is ok to touch/talk to loved one

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

801

6. Assure a place for privacy for the family 7. Facilitate the human experience—tip the technology to intimacy ratio in favor of persons Adapted from Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med 2001; 29(2 Suppl.):N26-33; with permission.

and understand the beliefs of its members as well as prior discussions regarding prognoses and family attitudes. Efforts to decrease disturbances show respect for the family and the importance of the discussion. An appropriately private and quiet setting must be arranged, and efforts should be made to include all key persons, especially those that the family views as essential. Setting the stage The first step in initiating the conference is to ensure that all parties know each other, and that a spokesperson is identified. A good way to begin is by eliciting the family’s understanding of the situation and their concerns. Using this strategy, issues of misunderstanding or unforeseen concerns can be captured early in the conference. It also gives the family the chance to talk first, avoiding a conference that is monopolized by the clinician’s agenda. The prognosis should be discussed frankly, medical jargon should be avoided, and the family should be given hope and support. Moving to comfort care In the transition to end-of-life care, attention must be given to reinforcing that the providers are not abandoning the patient and family. Assurances of aggressive palliation of symptoms should be provided with specifics of symptom management. A detailed description of how the terminal stage might appear and what to expect should be reviewed. Hope can be interwoven into the discussion even while a family is encouraged to focus on saying goodbye. Closure Closure is reached by consensus, even if only to note disagreement and plan for the next meeting. Summation and allowing ample time for questions may allow uncomfortable or nagging issues to surface. Nursing after Finally, the conference is benefited by nurses reviewing the meeting and further answering questions.

802

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

Communication and family conferences are time consuming, and involve difficult emotions for the providers. Effective communication is, however, one of the most important and frequent skills a critical care provider will use.

A good death: holistic issues such as patient and family support methods There is a growing literature documenting the experience of a good death in the ICU. Although specific guidelines have not been developed, reasonable first steps are to meet with the family on an ongoing basis to clearly define diagnosis and prognosis as well as to obtain patient and family feedback regarding symptom management and preparation for possible death. Data suggest that these steps have been challenging in the past, and remain challenging. Studies over the last 20 years have found that patients and their families do not meet with their physicians on a daily basis, nor do patients and their families understand their diagnoses and consequent prognoses [22,48]. However, several recent studies demonstrate the effectiveness of interventions such as written materials and more frequent meetings. For example, Azoulay et al [49] have demonstrated that about half of their patients do not have adequate communication with their providers. These researchers intervened with a simple leaflet detailing general information on the ICU and hospital, the name of the ICU physician caring for the patient, a diagram of a typical ICU room with the names of all the devices, and a glossary of 12 terms commonly used in the ICU. Use of this leaflet reduced the proportion of family members with poor comprehension from 40.9% to 11.5% (P < 0.0001) [50]. A recent study by Lilly et al addressed the problem of infrequent family meetings [51]. The study compared ‘‘usual care’’ with ‘‘proactive communication’’ in 134 and 396 patients, respectively. The severity of illness was adjusted via APACHE III score. The patients with ‘‘proactive communication’’ had meetings within 72 hours of admission. The results demonstrated reduced median length of ICU stay from 4 days to 3 days and significant cost savings to the institution with ‘‘proactive communication.’’ However, physicians’ discussions of a good death appear to differ greatly from those of other groups [52]. Physicians offered the most biomedical perspective while patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns. Six major components were identified through interviews and focus groups: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. These components are important to address to support the patient and family. Pronouncement of death Specific methods for pronouncement of death offer an opportunity for support to the family. Weismann outlines the following supportive steps [53]. Ask the nurse or

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

803

chaplain to accompany you; he or she can give you support and introduce you to the family. First, introduce yourself (including your relationship to the patient) to the family if they are present. Ask each person his or her name and relationship to the patient. Empathetic statements are appropriate, for example, ‘‘I’m sorry for your loss’’ or ‘‘This must be very difficult for you.’’ Then explain what you are there to do. Tell the family they are welcome to stay if they wish, while you examine their loved one. Ask if the family has any questions; if you cannot answer, contact someone who can. The pronouncement of death usually includes several steps: (1) identifying the patient by the hospital ID tag (note the general appearance of the body), (2) ascertaining that the patient does not rouse to verbal or tactile stimuli, (3) listening for the absence of heart sounds and feeling for the absence of carotid pulse, (4) looking and listening for the absence of spontaneous respirations, (5) recording the position of the pupils and the absence of pupillary light reflex, and (6) recording the time at which the assessment was complete.

Role of the physician After a patient dies, the physician is often a central figure in the death notification process. There is a rapidly growing literature on the components of sensitive notification, well-summarized in Fast Facts (http://www.eperc.mcw.edu) from the End-of-life Physician Education Resource Center [54,55]. Many of these steps are similar to setting up a family conference, including reviewing the medical record, finding a private meeting place, involving appropriate members of the multidisciplinary team, and identifying loved ones and family members who need to be present. It is particularly important to identify and respect ethnic, cultural, or religious traditions. This topic has been explored as a separate article in this volume. After patients have died, it is important to express your condolences, for example, ‘‘I’m sorry for your loss,’’ and talk openly about the death, using the words ‘‘died’’ or ‘‘death’’ during the initial conversation. Be prepared to explain the cause of death in nonmedical terms, and expect a wide range of emotional expression. It can be helpful to offer assurance that everything possible was done to keep the patient comfortable. Offer the opportunity to view the deceased, and allow time for processing the reality of death before discussing autopsy or tissue – organ donation. The language that is used is very important. Specific examples such as ‘‘it must be hard to accept’’ or ‘‘this must be very painful for you’’ are discussed by Curtis and Patrick [42]. Be aware that questions such as ‘‘How can I be of help?’’ are better received than identification with the family such as ‘‘I know how you feel,’’ or reassurance, such as ‘‘Time makes it easier.’’ Finally, clinicians should mention the option of organ donation, if that is appropriate. If available, organ procurement teams should have this discussion with families rather than the clinicians, as organ donation is more likely to occur

804

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

if an organ procurement team has this discussion with the family and appearances of conflict of interest are avoided [56].

Withdrawal of life support and withdrawal of mechanical ventilation It is now common to withdraw life support in the intensive care unit. As pointed out by Prendergast et al, patients who die now undergo fewer attempts at cardiopulmonary resuscitation and many more have life support actively withdrawn before death than did a decade ago [6,30]. Indeed, their recent study of 6030 deaths in ICUs across the US demonstrated that in 38% of these deaths, life support was withdrawn [6]. Once a decision has been made to withdraw life-sustaining treatment, it is essential that the patient and family have appropriate counseling from the physician and the multidisciplinary team. Conversations must include discussing the potential outcomes, reviewing the procedures involved in removing treatments, and providing support of the patient and family for this decision. Withdrawal of mechanical ventilation will be used as an example in this section. It is essential to emphasize to family members that life-sustaining therapy was not able to reverse the underling disease and that the removal of life-sustaining therapy is allowing the disease to take its natural course. In addition, clinicians should reassert that aggressive therapy in the form of palliative care will be provided to ensure the patient’s comfort. The family should recognize that several outcomes are possible: (a) rapid death within minutes, (b) death within hours to days, and (c) stable cardiopulmonary function leading to a different set of care plans, including potential hospital discharge. It is important to point out that the outcome is never known with certainty and all of these outcomes are possible.

The procedure of ventilator withdrawal It is important to ask what the family understands about this procedure [57,58]. The clinician should describe the procedure in clear, simple terms and answer any questions. The patient and family members should also be counseled about the use of oxygen and medications for symptom control, and be assured that the patient’s comfort is of primary concern. Clinicians should also discuss the possibility of breathlessness, agonal respirations, and myoclonus, and the treatment of these symptoms. For patients who are intubated, clinicians should elicit family preferences about extubation and discuss the advantages and disadvantages of extubation. It is vital to explain that the family and others that they select such as clergy can be at the bedside before, during, and after withdrawal of life-sustaining treatment. This can be arranged in advance, with appropriate input from nursing and administrative staff. Indeed, the authors have had pets present in the ICU for such procedures. It also is quite appropriate for family members to show love and

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

805

Box 5. The procedure of withdrawing life sustaining treatments I. Things to consider in withdrawing life-sustaining treatments 1. Most deaths in an ICU occur as a result of limiting or withdrawing therapies 2. Goal of care includes withdrawal of treatments that are of no benefit or not desired by the patient but result in discomfort or suffering 3. Withdrawing is legally, morally, and ethically equivalent to withholding 4. Withdrawing treatment is distinguishable from purposely hastening a death (intent) 5. Double effect: a tolerable side effect of relieving suffering is potentially hastening death in a critically ill patient with discomfort 6. Heroic treatments are equivalent to ordinary treatments 7. Artificial nutrition and hydration can be legally and ethically considered treatment and compassionately stopped

II. Steps to withdrawal or withholding of interventions 1. Determine decisional capacity or surrogacy 2. Address supervening psychiatric illness 3. Conduct interdisciplinary meeting and family conference; address contingency 4. Document discussions and end-of-life preferences 5. Address spiritual, religions, and cultural issues 6. Address symptom management 7. Create a humane and private environment (comfort, dignity, quiet) 8. Perform the procedure of withdrawal and document III. How-to of withdrawal in general with anticipate early death 1. Explain everything to family and patient 2. Turn off monitors and remove mobile technology (preoccupations) 3. Review plan for ensuring comfort and often involve family/ patient 4. Discontinue all lab draws, imaging studies, diagnostic tests except comfort assessment 5. Remove feeding tubes or enteral or IV supplementation as decided by consensus

806

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

6. Remove tubes, lines, drains, etc. (if it can be done without discomfort) 7. Remove restraints (if more comfortable) 8. Ensure adequate sedation and plan for evaluation/titration 9. Ensure adequate analgesia and plan for evaluation/titration 10. Remove/decrease support (eg, ventilator) congruent with interdisc/family plans 11. Address family needs (liberalize visiting, tissues, place to stay, specific wishes) 12. Address grief and bereavement for family and staff IV. Ways to withdraw ventilator support (immediate extubation versus terminal weaning) 1. Decrease FiO2 2. Decrease PEEP 3. Change mode to PS (or IMV—wean rate first) and wean pressure 4. Decrease or discontinue alarms 5. Use T-Piece and leave ETT in place (or trach in place) 6. Pull ETT and apply humidified air or oxygen to prevent drying V. Adequate sedation and analgesia and titration protocols (example orders) 1. Do not attempt resuscitation (see chart note documenting conference and plan) 2. D/C all prior orders for labs, medications, IVs except as below, feedings, radiographs, pending tests, compression stockings, and routine vital signs 3. Turn off and remove the following devices: NG tube, a-line, BP cuff, monitor 4. Liberalize family visitation 5. (analgesia) MSO4 gtt: continue current rate; bolus 50% to 150% of the hourly rate every 10 min prn RR > 20, HR > 110, grimacing, signs of discomfort; increase rate 50% with each needed bolus (ex 10 mg/h basal, bolus 5 to 10 mg and increase rate to 15 mg/h 6. (sedation) Versed gtt: continue current rate; bolus 25% to 50% hourly rate q 15 min prn agitation/distress 7. Example of nonextubate terminal vent wean (current SIMV/ PS 10/800/15/5: reduce all alarms to minimum settings; reduce FiO2 to RA and titrate PEEP to 0; once comfortable on

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

807

these settings, wean IMV to off over 5 minutes; then wean PS to 0 over 5 minutes 8. Example of extubate terminal vent wean (current SIMV/PS 10/800/15/5: reduce alarms; evacuate stomach then pull NG; suction ETT; reduce FiO2 to RA; extubate and suction mouth; Yankauer suction prn; apply mist mask on room air if excessive dry mouth Adapted from Rubenfeld GD, Crawford SW. Principles and practice of withdrawing life-sustaining treatment in the ICU. In: Curtis JR, Rubenfeld GD, editors. Managing death in the intensive care unit. New York: Oxford University Press; 2001. p. 127– 48; with permission. support through touch, wiping of the patient’s forehead, holding the patient’s hands, and talking to him or her. Finally, the decision to withdraw life-sustaining treatment is almost always emotionally charged. It is crucial for health care providers, and particularly physicians, to support, give guidance, and take leadership, for example, relating that, ‘‘This is our medical recommendation,’’ in supporting such decisions. Occasionally, it will be important to clarify the distinction between such decisions and euthanasia or assisted suicide. Before performing the procedure, physicians should provide adequate medication to prevent suffering, anxiety, and symptoms such as dyspnea [58,59]. Obviously there is an important ethical difference between escalating doses of medication to relieve symptoms (double effect) and administering medication intended to induce apnea or hypotension. A practical and rapid method for removing a patient from mechanical ventilation has been developed by Rubenfeld and Crawford, and lends itself to a structured approach (Box 5) [58].

Important points 

Patient preferences and prognostication Ethics  Communication  Holistic care  Procedural approach to withdrawal of therapies 

References [1] Callahan D. The troubled dream of life: in search of a peaceful death. New York: Simon and Schuster; 1993. p. 53.

808

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

[2] Luce JM, Rubenfeld GD. Can health care costs be reduced by limiting intensive care at the end of life? Am J Respir Crit Care Med 2002;165:750 – 4. [3] Campion EW, Mulley AG, Goldstein RL, Barnett GO, Thibault GE. Medical intensive care for the elderly. A study of current use, costs, and outcomes. JAMA 1981;246(18):2052 – 6. [4] Fedullo AJ, Swinburne AJ. Relationship of patient age to cost survival in a medical ICU. Crit Care Med 1983;11(3):155 – 9. [5] Nelson JE, Nierman DM. Special concerns for the very old. In: Curtis JR, Rubenfeld GD, editors. Managing death in the intensive care unit. New York: Oxford University Press; 2001. p. 349 – 67. [6] Prendergast TJ, Claessens MT, Luce JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 1998;158:1163 – 7. [7] Luce JM, Prendergast TJ. The changing nature of death in the ICU. In: Curtis JR, Rubenfeld GD, editors. Managing death in the intensive care unit. New York: Oxford University Press; 2001. p. 19 – 29. [8] Chelluri L, Grenvik A, Silverman M. Intensive care for critically ill elderly: mortality, costs, and quality of life. Arch Int Med 1995;155(10):1013 – 22. [9] Chelluri L, Pinsky MR, Donahoe MP, Grenvik A. Long-term outcome of critically ill elderly patients requiring intensive care. JAMA 1993;269(24):3119 – 23. [10] Pesau B, Falger S, Berger E, Weimann J, Schuster E, Leithner C, et al. Influence of age on outcome of mechanically ventilated patients in an intensive care unit. Crit Care Med 1992;20(4): 489 – 92. [11] Swinburne AJ, Fedullo AJ, Bixby K, Lee DK, Wahl GW. Respiratory failure in the elderly: analysis of outcome after treatment with mechanical ventilation. Arch Intern Med 1993;153(14): 1657 – 62. [12] Fedullo AJ, Swinburne AJ. Relationship of patient age to clinical features and outcome for in-hospital treatment of pneumonia. J Gerontol 1985;40(1):29 – 33. [13] Rockwood K, Noseworthy TW, Gibney RT, Konopad E, Shustack A, Stollery D, et al. One-year outcome of elderly and young patients admitted to intensive care units. Crit Care Med 1993; 21(5):687 – 91. [14] Wu AW, Rubin HR, Rosen MJ. Are elderly people less responsive to intensive care? J Am Geriatr Soc 1990;38(6):621 – 7. [15] Cohen IL, Lambrinos J. Investigating the impact of age on outcome of mechanical ventilation using a population of 41,848 patients from a statewide database. Chest 1995;107(6):1673 – 80. [16] Adelman RD, Berger JT, Macina LO. Critical care for the geriatric patient. Clin Geriatr Med 1994;10(1):19 – 30. [17] Hadorn DC. Setting health care priorities in Oregon. Cost-effectiveness meets the rule of rescue. JAMA 1991;265(17):2218 – 25. [18] Danis M, Patrick DL, Southerland LI, Green ML. Patients’ and families’ preferences for medical intensive care. JAMA 1988;260:797 – 802. [19] Teno JM, Fisher E, Hamel MB, Wu AW, Murphy DJ, Wenger NS, et al. Decision-making and outcomes of prolonged ICU stays in seriously ill patients. JAGS 2000;48:S70 – 4. [20] Groeger JS, Lemeshow S, Price K, Nierman DM, Shite P, Klar J, et al. Multicenter outcome study of cancer patients admitted to the intensive care unit: a probability of mortality model. J Clin Oncol 1998;16(2):761 – 70. [21] Knaus WA. Prognosis with mechanical ventilation: the influence of disease, severity of disease, age, and chronic health status on survival from an acute illness. Am Rev Respir Dis 1989;140: S8 – 13. [22] SUPPORT Principle Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments. JAMA 1995;274:1591 – 8. [23] Zimmerman JE, Wagner DP, Draper EA, Wright L, Alzola C, Knaus WA. Evaluation of acute physiology and chronic health evaluation III predictions of hospital mortality in an independent database. Crit Care Med 1998;26(8):1317 – 26.

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

809

[24] Knaus WA, Draper EA, Wagner DP, Zimmerman JE. APACHE II: a severity of disease classification system. Crit Care Med 1985;13:818 – 29. [25] Knaus WA, Draper EA, Wagner DP, Zimmerman JE. Prognosis in acute organ-system failure. Ann Surg 1985;202(6):685 – 93. [26] Pritchard RS, Fisher ES, Teno JM, Sharp SM, Reding DJ, Knaus WA, et al. Influence of patient preferences and local health system characteristics on the place of death. JAGS 1998;46:1242 – 50. [27] Field MJ, Cassel CK. Approaching death: improving care at the end of life. Washington, DC: National Academy Press; 1997. [28] Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. JAGS 1997;45:1339 – 44. [29] Deaths by place of death, age, race, and sex: United States; 1999. (www.cdc.gov/nchs/data/ statab/ws00199.table309.pdf; accessed 8-16-2002). [30] Prendergast JT, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1997;155(1):15 – 20. [31] Lynn J, Harrell F, Cohn F, Wagner D, Connors AF. Prognoses of seriously ill hospitalized patients on the days before death: implications for patient care and public policy. New Horiz 1997;5(1):56 – 61. [32] Ajemain I. The interdisciplinary team. In: Doyle K, Hanks G, MacDonald N, editors. Oxford textbook of palliative medicine. 1st edition. New York: Oxford University Press; 1993. p. 18. [33] Cummings I. The interdisciplinary team. In: Doyle K, Hanks G, MacDonald N, editors. Oxford textbook of palliative medicine. 2ed edition. New York: Oxford University Press; 1998. p. 19 – 30. [34] Mularski RA, Bascom P, Osborne ML. Educational agendas for interdisciplinary end-of-life curricula. Crit Care Med 2001;29(2 Suppl.):N16 – 23. [35] Truog RD, Cist AFM, Brackett SE, Burns JP, Curley MAQ, Danis M, et al. Recommendation for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine. Crit Care Med 2001;29(12):2332 – 48. [36] Mularski RA, Osborne ML. The changing ethics of death in the ICU. In: Curtis JR, Rubenfeld GD, editors. Managing death in the intensive care unit. New York: Oxford University Press; 2001. p. 7 – 18. [37] American Thoracic Society Bioethics Task Force. Withholding and withdrawing life-sustaining therapy. Ann Intern Med 1991;115:478 – 85. [38] ACCP/SCCM consensus panel. Ethical and moral guidelines for the initiation, continuation, and withdrawal of intensive care. Chest 1990;97:949 – 58. [39] Task Force on Ethics of the Society of Critical Care Medicine. Consensus report on the ethics of foregoing life-sustaining treatments in the critically ill. Crit Care Med 1990;18:1435 – 9. [40] President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: a report on the ethical and legal implications of informed consent in the patient – practitioner relationship. Washington, DC: US Government Printing Office; 1982. [41] Faber-Langendoen D. A multi-institutional study of care given to patients dying in hospitals: ethical practices and implications. Arch Intern Med 1996;156:2130 – 6. [42] Curtis JR, Patrick DL. How to discuss dying and death in the ICU. In: Curtis JR, Rubenfeld GD, editors. Managing death in the intensive care unit. New York: Oxford University Press; 2001. p. 85 – 102. [43] Mularski RA. A 49 year-old woman with metastatic breast cancer and acute respiratory distress syndrome who lacks decision-making capacity and a surrogate decision-maker. In: Heffner JE, Byock IR, editors. Palliative and end of life pearls. Philadelphia: Hanley and Belfus, Inc.; 2002. p. 92 – 5. [44] Grisso T, Appelbaum PS. Assessing competence to consent to treatment: a guide for physicinas and other health professionals. New York: Oxford University Press; 1998. [45] Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med 2001;29(2 Suppl.):N26 – 33.

810

R.A. Mularski, M.L. Osborne / Crit Care Clin 19 (2003) 789–810

[46] Brody H, Campbell ML, Faber-Langendoen K, Ogle KS. Withdrawing intensive life-sustaining treatment—recommendations for compassionate clinical management. N Engl J Med 1997; 336(9):652 – 7. [47] Curtis Jr A. 62-year-old man with lymphoma who develops respiratory failure, renal failure, and hypotension after bone marrow transplantation. In: Heffner JE, Byock IR, editors. Palliative and end of life pearls. Philadelphia: Hanley and Belfus, Inc.; 2002. p. 4 – 7. [48] Molter NC. Needs of relatives of critically ill patients: a descriptive study. Heart Lung 1979;8: 332 – 9. [49] Azoulay E, Chevret S, Leleu G, Pochard F, Barboteu M, Adrie C, et al. Half the families of intensive care unit patients experience inadequate communication with physicians. Crit Care Med 2000;28:3044 – 9. [50] Azoulay E, Pochard F, Chevret S, Jourdain M, Bornstain C, Wernet A, et al., for the French FAMIREA. Group impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: a multicenter, prospective, randomized, controlled trial. Am J Respir Crit Care Med 2002;165:438 – 42. [51] Lilly CM, De Meo DL, Sonna LA, Haley KJ, Massaro AF, Wallace RF, et al. An intensive communication intervention for the critically ill. Am J Med 2000;109(6):469 – 75. [52] Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med 2000;132(10): 825 – 32. [53] Weissman D. Fast fact and concepts #04: death pronouncement. End-of-Life Physician Education Resource Center; June, 2000. www.eperc.mcw.edu. [54] Weissman D. Fast fact and concepts #01: treating terminal delirium. End-of-Life Physician Education Resource Center; May, 2000. www.eperc.mcw.edu. [55] Midland D. Fast facts and concepts #64: death notification. End-of-Life Physician Education Resource Center; March, 2002. www.eperc.mcw.edu. [56] Gortmaker SL, Beasley CL, Sheehy E, Lucas BA, Brigham LE, Grenvik A, et al. Improving the request process to increase family consent for organ donation. J Transplant Coordinat 1998;8: 210 – 7. [57] von Gunten C, Weissman DE. Fast facts and concepts #35: information for patients and families about ventilator withdrawal. End-of-Life Physician Education Resource Center; February, 2001. www.eperc.mcw.edu. [58] Rubenfeld GD, Crawford W. Principles and practice of withdrawing life-sustaining treatment in the ICU. In: Curtis JR, Rubenfeld GD, editors. Managing death in the intensive care unit. New York: Oxford University Press; 2001. p. 127 – 48. [59] Segredo V, Caldwell JE, Matthay MA, Sharma ML, Gruenke LD, Miller RD. Persistent paralysis in critically ill patients after long-term administration of vecuronium. N Engl J Med 1992;327(8): 524 – 8.