- Email: [email protected]
Gerontological advance practice nurses
GERONTOLOGICAL ADVANCE PRACTICE NURSES As End-of-Life Care Facilitators
Martha L. Henderson, GAPN-BC, MSN, MDIV, DMIN
Gerontological advance practice nurses (GAPNs) are ideal providers to assist elderly patients with advanced chronic illness and their families as they experience the final phase of life. The goal of this individualized process is for the patient to experience a “good death”—one that is comfortable and self-determined. This article proposes a model in which the GAPN offers 5 essential services in caring for the patient and family based on their needs and on the principles of end-of-life (EOL) care: 1) assessment of the living situation; 2) symptom management and enhancement of quality of life; 3) advance care planning (ACP); 4) patient and family counseling (emotional, social, spiritual); and 5) continuity, communication, and coordination of care. (Geriatr Nurs 2004;25:233-7)
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his article describes the gerontological advance practice nurse (GAPN) as an ideal provider to ensure that the needs of elderly patients with advanced chronic illness are addressed during their decline and death. The proposed model of care is individualized, reimbursable, and based on principles of end-of-life care as well as concerns of patients and their families. It contains 5 essential domains of care: 1) assessment of the living situation; 2) symptom management and enhancement of quality of life; 3) advance care planning; 4) patient and family counseling; and 5) continuity, communication, and coordination of care. BACKGROUND GAPNs, geriatric nurse practitioners and gerontological nursing clinical specialists, are often primary care providers (PCPs) or consulting clinicians for adults with advanced chronic illnesses that will progress to death. GAPNs are in a unique position to guide patients and their families through an increasingly complex health care system toward the goal of a “good death”—one that is comfortable and self-determined. This ability comes from nursing expertise in holistic gerontological care, trustful relationships with patients and families, and their authority as PCPs or consulting advance practice nurses (APNs). Ebersole and Enloe, as visionaries in the context of end-of-life (EOL) care, stated in 1983, “Geriatric nurse practitioners are unique in their capacity to combine nursing concepts, geriatric theories and medical management of the common acute and chronic problems of the aged into a holistic approach to the care of older persons.”1 Other nurse practitioners attest to the value and use of APNs in the EOL role.2,3 Some GAPNs will need additional education to become more competent in addressing the needs of these patients and their families. Using nursing faculty experts in palliative care, the End-of-Life Nursing Education Consortium developed and teaches a 3-day course for preparing advance practice nurses to deliver EOL care.4 There are other educational resources available for APNs interested in EOL care, including nursing texts5,6 and other online resources.7,8
Unmet Needs of Those with Advanced Chronic Illness Frail elders who experience a progressive decline and enter their final phase of life need ongoing professional and personal care services, but many are ineligible for home health and hospice, the organizations best able to meet their needs. Most of these elders cannot access home health because they are not homebound or do not have a required “skilled” nursing care need. Many seriously chronically ill elders do not qualify for hospice because their uncertain course of illness prohibits their meeting the 6-month prognosis criterion for hospice eligibility. Although some patients with end-stage chronic illnesses do qualify for hospice, they may not be referred because their primary care providers are unaware of eligibility criteria for noncancer diagnoses.9
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Concerns of the Dying and Adoption of Precepts of EOL Care Research on the concerns of patients facing death gives care providers insight into the services they should provide. In studies by Steinhauser et al10 and Singer et al,11 patients named similar concerns: 1) adequate pain and symptom management; 2) preparation for death, clear decision making, achieving control, avoiding prolonged dying, and being a burden to others; 3) strengthening relationships and contributing to others; 4) affirming the whole person; and 4) attaining a sense of completion. The established principles of EOL care are those of the Palliative Care Task Force’s Last Acts12 together with those of other national organizations.13-15 In 1997, the task force adopted 5 Precepts of End-of-Life Care, which can be found in greater detail on their Web site.16 The precepts are as follows: • Respecting patient goals, preferences, and choices • Comprehensive caring • Utilizing the strengths of interdisciplinary resources • Acknowledging and addressing caregiver concerns • Building systems and mechanisms of support In 1999, the Nursing Leadership Consortium in End-ofLife Care brought together 22 national nursing organizations, including the Hospice and Palliative Nurses Association,17 American College of Nurse Practitioners,18 and the National Gerontological Nursing Association,19 with a commitment to improving EOL care as a strategic priority for each organization. A year later, under the new name of Nursing Leadership Academy for End-of-Life Care, these groups and others endorsed the precepts as guidelines for their constituents’ education in EOL care.20
EOL Services by APNs Are Reimbursable Medicare B rules allow reimbursement to APNs regardless of the setting, thereby increasing access to their services. APNs can now bill Medicare using their own provider number even if a physician is not present, provided there is evidence of care by the physician at other times.21,22 Medicare B reimbursement at a rate of 85% of physician fees is now available for office, home, and long-term care and for assisted living facility visits by nurse practitioners, making this model of care potentially cost-effective.23 Rates vary according to practice location, size, and affiliations with medical centers. Reimbursement for some services can be billed at higher rates depending on documented time spent counseling the patient.24,25 The Centers for Medicare and Medicaid Services has recently released a billing guide for physician assistants, nurse practitioners, and clinical specialists.26 Reimbursement for APNs who have a Medicare provider number can now bill Medicare B for seeing hospice patients, but only if they are not employed by a hospice agency. This new bill (P.L. 108173) was passed by Congress on December 8, 2003.27 Now APNs must advocate for reimbursement for those who are employees of hospices.
Geriatric Nursing
Volume 25
Number 4
A Model of an EOL Care Facilitator The following model applies the principles of EOL care to actual practice. It is based on 30 years of geriatric nurse practitioner experience working with elderly patients with advanced chronic illness during the final phase of their lives. GAPN service is particularly helpful for chronically ill patients who have had a recent hospitalization for an exacerbation of a chronic illness, require frequent medication adjustments because of unstable illness, have recurrent acute illnesses, need advance care planning or sophisticated symptom management, or are experiencing functional decline and need evaluation of the current living situation. Patients may be referred to the GAPN by the patient’s primary care provider or others, such as home health nurses, through their PCP. Patients may be enrolled in hospice or may be hospice “graduates” who have improved and are stable although frail. If these patients need the intense palliative care services of hospice again, the GAPN makes the referral to hospice with physician authorization and follows the case until the patient’s death. Often GAPN diagnostic skills, pharmacologic knowledge, and clinical judgment are complementary to the palliative care knowledge and experience of hospice nurses. For example, a GAPN may help the hospice nurse properly diagnose a distressed patient with wheezing and dyspnea as having an acute exacerbation of congestive heart failure and therefore needing diuresis in addition to morphine. M O D E L I M P L E M E N TAT I O N Recognizing the comprehensive needs of elders with advanced chronic illness and a gap in delivery of services, the creation of the role of geriatric nurse practitioner (GNP) as EOL care facilitator was negotiated in 2001 with the Program on Aging and the Division of General Internal Medicine at the University of North Carolina School of Medicine at Chapel Hill. The role was funded for 20% time, making the GNP available for this practice 8 hours per week. All services were delivered in the community and could be billed under Medicare B with the hope that the Medicare reimbursement would be adequate to fund the position. The service advertised to referring providers was titled “Transitions: Living and Dying Well; The Geriatric Nurse Practitioner as End-of-Life Care Provider.” The referral criterion was that the PCP believed it was possible for the patient to die from advanced chronic illness within 1 year. Recognizing the limited prognosis and need for a palliative care approach for these sick patients, the time-consuming nature of such care, and the fact that the GPN would visit the patient in the community made GAPN services appealing to patients, families, and primary care providers. For patients and families, the program was titled “Transition Care: Living Well while Facing Health Challenges.” The services were explained with the use of an illustrated brochure. Many of the patients had never been told that they would die from the end stage of their chronic illness and did not see themselves as “terminally July/August 2004
ill.” Therefore, the focus was on the positive concept of living well. This emphasis—to live fully and comfortably in one’s final phase of life—is also part of the hospice philosophy. These patients were visited in their home setting, whether their private residence or an institutional home such as a nursing home, adult care facility, or an assisted living facility. Older adults who are gradually failing in nonacute settings can use this time to consider their quality of life and their priorities, values, and goals, as well as to engage in advance care planning. SERVICES OFFERED IN 5 DOMAINS OF CARE Available services are organized into 5 domains of care, each of which applies EOL principles of care and addresses concerns of patients.
Domain 1: Assessment of the Living Situation The patient’s setting, functional ability, needs, and caregiver help are assessed to determine whether the current situation is adequate to meet the patient’s ongoing needs. Often problems with function and the proper level of care are not immediately obvious and need professional assessment in the patient’s setting, whether home or institutional. For example, one referral was a hospice graduate, a 97year-old woman with congestive heart failure and dementia, who was earlier discharged home from the hospital to the care of hospice. With excellent hospice care, this frail patient improved and became ineligible for hospice care, but she needed ongoing professional supervision and attention to multiple needs to be able to remain at home. The GAPN monitored her heart disease and modified her treatment to include gentle conditioning exercises using physical therapy. Morphine elixir was administered only as needed, rather than in scheduled doses, for mild episodic shortness of breath. Additional interventions included the education and support of her family, the suggestion of hiring an in-home aide, and coordination of care, which enabled her to continue living at home. In another case, following hip fracture and pinning, a resident with dementia was referred to a skilled nursing facility for rehabilitation, rather than returning to her assisted living facility with subsequent outpatient physical therapy visits. This provided a safe, more supervised environment.
Domain 2: Symptom Management and Enhancement of Quality of Life This area of care relies on the GAPN’s knowledge and skills in managing advanced chronic illness, implementing palliative care, and helping patients decide how to get the most out of the time and energy they have remaining. An example involved care of an assisted living resident whose last goal in life was to spend her final days at a summer home with her daughter. Initially the resident was quite depressed, debilitated, and seemed unable to reach this goal. After a thorough assessment, the GAPN increased the patient’s antidepressant medication, ordered 235
occupational and physical therapy for strengthening and improving function, and customized nutritional support with the help of the family. The patient improved considerably and was able to spend her last days very contentedly in her summer home.
basic faith in Christianity. Arranging a family communion service in the nursing home brought reassurance, shared worship, and resolution of this concern.
Domain 3: Advance Care Planning
This domain requires that a GAPN build ongoing relationships of trust and continuous care, often across settings, that the patient and family may count on until the patient’s death. This includes collaborating with new providers and providing a reassuring, guiding presence during acute illnesses, discharges, and transfers. A personal example concerned a 97-year-old, mildly demented woman who fell and broke her hip and was transferred to the hospital. I met the patient and her family in the emergency department and helped with the decision to pin the hip as well as related EOL decisions. This included rescinding her DNR order during the surgery, but not prolonging heroics if complications were not easily reversed. During the hospitalization, I helped the family understand the need for a 24-hour sitter. My daily visits were not reimbursable but were necessary for quality care. Discharge to the nursing home brought a transition to a new facility and a physician who welcomed my input and visits, which were reimbursable under Medicare B. When the patient developed terminal pneumonia and the family wanted comfort care, I consulted with an on-call hospice nurse colleague to help achieve excellent symptom relief so that this patient would die comfortably. When the patient died during the night, I went immediately to support the family. During this visit they thanked me for my regular visits, including working with the nursing home staff, and for assisting the family in making difficult decisions. They felt they would not have been able to keep the patient at home for 1.5 years before the fall without the ongoing care and guidance through the Transitions program. Communication regarding a patient’s care at the end of life often suffers.29 Adequate information and support for nursing home staff and other residents are often neglected when a patient dies. When a family did not choose to return to the nursing home after the death of a 102-yearold patient, a brief gathering around the patient’s bed, which included the GAPN, a few staff members, and the resident’s neighbors, was held to reminisce, read a scriptural passage, and pray. This seemed to allow an experience of respectful closure to honor this well-loved patient.
Advance care planning involves helping patients face their final phase of life and providing the opportunity for them to plan how they hope to die. When possible, the GAPN opens a conversation about feelings and wishes concerning death and eventually encourages completion of advance directives, including appointment of a health care power of attorney and discussion of treatment preferences. Specific EOL orders may result, such as “do not resuscitate (DNR)” “do not hospitalize,” or “do not tube feed.” Any patient’s wishes for continued aggressive life-prolonging treatment are also respected. If a patient is unable to have this discussion or complete advance directives, the GAPN is able to counsel family members about end-of-life treatment preferences in accordance with what the patient would want. (See advance care planning booklets and worksheets for the GAPN to use with patients or families at the Nurse.org Web site.28) For example, a patient with end-stage Alzheimer’s had not wanted tube feeding or prolongation of dying. His wife was guided through the process of deciding not to treat a bout of recurrent aspiration pneumonia. Two other patients signed DNRs based on informed discussions. Facilitated by planning ahead, the family of a patient with dementia, hip fracture, and subsequent pneumonia that was unresponsive to oral antibiotics decided not to send her back to the hospital but allow her to die comfortably in the nursing home. Many years of experience as a GNP have illustrated that advance care planning usually results in avoiding a crisis during active dying, honoring patient wishes, and allowing grieving while making good memories of last moments together.
Domain 4: Patient and Family Counseling—Emotional, Social, and Spiritual Patient and family counseling involves supporting patients and their families, helping them become aware that the patient’s illness is life-threatening, and ushering in “special time” that allows them to cherish relationships and spend time together. A GAPN may be involved in counseling for grief, anger, guilt, or family conflict or may refer the patient to a social worker, other counselor, or clergy. Examples of needs that merited counseling included a patient who was very anxious about her faith in the face of death and another who struggled with being a burden to her family. For a third patient who was bitter and had much unfinished business, arrangements were made for a psychiatric nurse therapist to come regularly to the nursing home to counsel the patient in preparation for death. Another resident was concerned about the “salvation” of her children, who did not believe as she did but shared a
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Domain 5: Continuity, Communication, and Coordination of Care
E A R LY P I L O T D ATA A year of testing this model resulted in the author’s accepting referrals and caring for 25 patients, seeing about 5 patients in various sites during an 8-hour per week practice. Activities included educating providers on the model and referrals; assessing and managing the patient; collaborating with the referring PCP, families, staff members, and other professionals; driving to and coordinating care across sites; reviewing lab results; dictating; and helping with billing. The
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unique aspect of this role that enhanced its feasibility is the combination of a broad scope of care, the use of GAPN knowledge and skill in advanced chronic disease and symptom management, following patients across settings, and the fact that the services are reimbursable by Medicare. Brief evaluation forms gathered from families of deceased patients showed their satisfaction and appreciation for the individualized, ongoing care that their loved one received. Physicians especially valued the care, time saved for them, and feedback provided. The work of providing quality nursing care to elders who were completing their lives was very fulfilling. Funding has been provided to the author for formal evaluation of the model. There is a great need for other GAPNs to evaluate clinical practice models in which they deliver EOL care to those with advanced chronic illness.30,31 CONCLUSION: AN APPROACH TO TRANSITION CARE AND FUTURE WORK FOR GAPNS GAPNs knowledgeable in end-of-life care are uniquely qualified to meet the needs of older adults dying from advanced chronic illness in a compassionate, holistic, competent, and cost-effective way. The model described here, using a gerontological advance practice nurse as an EOL care facilitator, is one way to facilitate a good death—that is, to help patients complete their lives comfortably and in keeping with their wishes. Professional challenges lie in educating patients and society at large about the capabilities of the GAPN in end-of-life care and in removing regulatory, reimbursement, and other barriers to this practice. REFERENCES 1. Ebersole P, Enloe CH. Geriatric nurse practitioner—vital to hospice and home health. Caring 1983;2(6):48-50. 2. Kuebler KK. The palliative care advance practice nurse. J Palliat Med 2003;6:707-14. 3. Gabany JM. Factors contributing to the quality of end-of-life care. J Am Acad of Nurse Pract 2000;12: 472-4. 4. Sherman DW, Matzo ML, Rogers S, et al. Achieving quality care at the end of life: a focus on the end of life nursing education consortium (ELNEC) curriculum. J Prof Nurs 2002;18:255-62. 5. Matzo ML, Sherman DW, eds. Palliative care nursing: Quality care to the end of life. New York: Springer, 2001. 6. Ferrell BR, Coyle N, eds. Textbook of palliative nursing. Oxford, England: Oxford University Press, 2001. 7. Palliative care resources for nurses. Available at www.palliativecarenursing.net. Cited April 28, 2004. 8. American College of Nurse Practitioners End of Life Task Force resources. Available at www.nurse.org/acnp/endoflife/index.shtml. Cited on April 28, 2004. 9. Lynn J. Serving patients who may die soon and their families: the role of hospice and other services. JAMA 2001;285:925-32. 10. Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage 2001;22:727-37. 11. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA 1999;281:163-8. 12. Last Acts Coalition Web site. Available at www.lastacts.org. Cited on April 28, 2004. 13. Academy of Nursing Leadership on End-of-Life Care resources. Available at www.palliativecarenursing.net. Cited on April 28, 2004. 14. Lynn J. Measuring quality of care at the end-of-life: a statement of principles. J Am Geriatr Soc 1997;45:526-7. 15. Field MJ, Cassel CK, eds. Approaching death: improving care at the end-of-life. Institute of Medicine Report. Washington, DC: National Academy Press, 1997. 16. Precepts on End-of-Life Care. Available at www.lastacts.org/docs/profpre cepts.pdf. Cited on April 28, 2004. 17. Hospice and Palliative Care Nurses Association Web site. Available at www.hpna.org. Cited on April 28, 2004.
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18. American College of Nurse Practitioners Web site. Available at www.nurse.org/acnp. Cited on April 28, 2004. 19. National Gerontological Nursing Association Web site. Available at www.ngna.org. Cited on April 28, 2004. 20. Academy of Nursing Leadership on End-of-Life Care endorsement of Last Acts Precepts. Available at www.palliativecarenursing.net/pcare_commitment.html. Cited on April 28, 2004. 21. Lacey K, Minarik, P. Medicare reimbursement of ANPs. Am J Nursing 2000;100:24AAA-DDD. 22. Medicare regulations regarding nurse practitioners. Available at: www.nurse.net/medicare/regs/fedreg.58863.html. Cited on April 28, 2004. 23. American Academy of Nurse Practitioners summary of Medicare information on billing. Available at www.aanp.org/Practice+Policy+and+Legislation/ Practice/Billing/Medicare.htm. Cited on April 28, 2004. 24. Von Gunten C, Ferris F, Kirschner C, Emanuel C. Coding and reimbursement mechanisms for physician services in hospice and palliative care. J Palliat Med 2000;3:157-64. 25. Center to Advance Palliative Care Recommendations to Centers for Medicare and Medicaid Services Regarding End-of Life Care. Available at www.capc.org/content/177. Cited on April 28, 2004. 26. Medicare billing guidelines for NPs. www.medicarenhic.com/providers/billing/ nonphygd_mar04.pdf. Cited on April 28, 2004. 27. Public Law 108-173, the Medicare Prescription Drug, Improvement and Modernization Act of 2003, was signed into law December 8, 2003. frweb gate.access.gpo.gov/cgi-bin/useftp.cgi?IPaddress=162.140.64.88& filename=publ173.pdf&directory=/diskb/wais/data/108_cong_public_laws. See Section 408, p. 206-7. Cited on April 28, 2004. 28. Advance care planning booklet and worksheet. Available at www.nurse.org/ acnp/endoflife/advd.care.res.shtml. Cited on April 28, 2004. 29. Hanson LC, Henderson M, Menon M. As individual as death itself: a focus group study of terminal care in nursing homes. J Palliat Med 2001:5:117-25. 30. Emnett J, Byock I, Twchig JS. Advanced practice nursing: pioneering practices in palliative care and position statement. Monograph available at www.pro motingexcellence.org/apn. Cited on April 28, 2004. 31. Dahlin C, Campbell M, McCorkle R. Advanced practice nurses’ role in palliative care: a position statement from American nursing leaders. Monograph available at www.promotingexcellence.org/apn. Cited on April 28, 2004.
ADDITIONAL RESOURCES 1. AGS Panel on Persistent Pain in Older Persons. J Am Ger Soc 2002;50:S205-24. 2. Callanan M, Kelley P. Final gifts: understanding the special awareness, needs and communications of the dying. New York: Bantam Books, 1992. 3. Doyle D, Hanks G, Cherny NI, et al. Oxford Textbook of Palliative Medicine. 3rd ed. New York : Oxford University Press, 2004. 4. Heffner J, Byock I. Palliative and end of life pearls. Philadelphia: Hanley & Belfus, 2002. 5. Kuebler KK, Berry PH, Heidrich DE. End of life care: clinical practice guidelines. Philadelphia: Saunders, 2002. 6. Lipman AG, Jackson KC. Evidence based symptom control in palliative care. New York: Pharmaceutical Products Press, 2000. 7. Palliative Care Series. Am J Nursing. 2002-2004. 102(5):26-31; 102(7):26-34; 102(9):48-57; 102(11):36-42; 103(1):48-55; 103(3):50-58; 103(5):52-60; 103(7):42-52; 103(9):42-52; 103(11):48-58; 104(1):48-57. 8. Pocket Guide to Hospice/Palliative Medicine. American Academy of Hospice and Palliative Medicine. Available at www.aahpm.org/bookstore. 9. Wiesman D. End of Life/Palliative Education Resource Center (EPERC). Available at www.eperc.mcw.edu. 10. Wrede-Seaman L. Symptom management algorithms: a handbook of palliative care. Providence Yakima Medical Center: Central Washington Service Area. 1999. Available at www.Intelli-card.com. 11. Sherman DW, Matzo ML, Coyne P, Ferrell BR, Penn BK. Teaching symptom management in end-of-life care: The didactic content of teaching strategies based on the end-of-life nursing education curriculum. J Nurs Staff Dev 2004;20:103-15.
MARTHA L. HENDERSON, GAPN-BC, MSN, MDIV, DMIN, is an assistant professor in the School of Nursing and School of Medicine at the University of North Carolina, Chapel Hill.
Acknowledgements The author thanks Barbara Germino, RN, PhD; Lisa Munsat, MSN, APRN-BC; and Nancy Milio, RN, PhD for their assistance in revising this article. 0197-4572/$ - see front matter © 2004 Elsevier Inc. All rights reserved. doi:10.1016/j.gerinurse.2004.06.014
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Martha L. Henderson, GAPN-BC, MSN, MDIV, DMIN
Gerontological advance practice nurses (GAPNs) are ideal providers to assist elderly patients with advanced chronic illness and their families as they experience the final phase of life. The goal of this individualized process is for the patient to experience a “good death”—one that is comfortable and self-determined. This article proposes a model in which the GAPN offers 5 essential services in caring for the patient and family based on their needs and on the principles of end-of-life (EOL) care: 1) assessment of the living situation; 2) symptom management and enhancement of quality of life; 3) advance care planning (ACP); 4) patient and family counseling (emotional, social, spiritual); and 5) continuity, communication, and coordination of care. (Geriatr Nurs 2004;25:233-7)
July/August 2004
233
T
his article describes the gerontological advance practice nurse (GAPN) as an ideal provider to ensure that the needs of elderly patients with advanced chronic illness are addressed during their decline and death. The proposed model of care is individualized, reimbursable, and based on principles of end-of-life care as well as concerns of patients and their families. It contains 5 essential domains of care: 1) assessment of the living situation; 2) symptom management and enhancement of quality of life; 3) advance care planning; 4) patient and family counseling; and 5) continuity, communication, and coordination of care. BACKGROUND GAPNs, geriatric nurse practitioners and gerontological nursing clinical specialists, are often primary care providers (PCPs) or consulting clinicians for adults with advanced chronic illnesses that will progress to death. GAPNs are in a unique position to guide patients and their families through an increasingly complex health care system toward the goal of a “good death”—one that is comfortable and self-determined. This ability comes from nursing expertise in holistic gerontological care, trustful relationships with patients and families, and their authority as PCPs or consulting advance practice nurses (APNs). Ebersole and Enloe, as visionaries in the context of end-of-life (EOL) care, stated in 1983, “Geriatric nurse practitioners are unique in their capacity to combine nursing concepts, geriatric theories and medical management of the common acute and chronic problems of the aged into a holistic approach to the care of older persons.”1 Other nurse practitioners attest to the value and use of APNs in the EOL role.2,3 Some GAPNs will need additional education to become more competent in addressing the needs of these patients and their families. Using nursing faculty experts in palliative care, the End-of-Life Nursing Education Consortium developed and teaches a 3-day course for preparing advance practice nurses to deliver EOL care.4 There are other educational resources available for APNs interested in EOL care, including nursing texts5,6 and other online resources.7,8
Unmet Needs of Those with Advanced Chronic Illness Frail elders who experience a progressive decline and enter their final phase of life need ongoing professional and personal care services, but many are ineligible for home health and hospice, the organizations best able to meet their needs. Most of these elders cannot access home health because they are not homebound or do not have a required “skilled” nursing care need. Many seriously chronically ill elders do not qualify for hospice because their uncertain course of illness prohibits their meeting the 6-month prognosis criterion for hospice eligibility. Although some patients with end-stage chronic illnesses do qualify for hospice, they may not be referred because their primary care providers are unaware of eligibility criteria for noncancer diagnoses.9
234
Concerns of the Dying and Adoption of Precepts of EOL Care Research on the concerns of patients facing death gives care providers insight into the services they should provide. In studies by Steinhauser et al10 and Singer et al,11 patients named similar concerns: 1) adequate pain and symptom management; 2) preparation for death, clear decision making, achieving control, avoiding prolonged dying, and being a burden to others; 3) strengthening relationships and contributing to others; 4) affirming the whole person; and 4) attaining a sense of completion. The established principles of EOL care are those of the Palliative Care Task Force’s Last Acts12 together with those of other national organizations.13-15 In 1997, the task force adopted 5 Precepts of End-of-Life Care, which can be found in greater detail on their Web site.16 The precepts are as follows: • Respecting patient goals, preferences, and choices • Comprehensive caring • Utilizing the strengths of interdisciplinary resources • Acknowledging and addressing caregiver concerns • Building systems and mechanisms of support In 1999, the Nursing Leadership Consortium in End-ofLife Care brought together 22 national nursing organizations, including the Hospice and Palliative Nurses Association,17 American College of Nurse Practitioners,18 and the National Gerontological Nursing Association,19 with a commitment to improving EOL care as a strategic priority for each organization. A year later, under the new name of Nursing Leadership Academy for End-of-Life Care, these groups and others endorsed the precepts as guidelines for their constituents’ education in EOL care.20
EOL Services by APNs Are Reimbursable Medicare B rules allow reimbursement to APNs regardless of the setting, thereby increasing access to their services. APNs can now bill Medicare using their own provider number even if a physician is not present, provided there is evidence of care by the physician at other times.21,22 Medicare B reimbursement at a rate of 85% of physician fees is now available for office, home, and long-term care and for assisted living facility visits by nurse practitioners, making this model of care potentially cost-effective.23 Rates vary according to practice location, size, and affiliations with medical centers. Reimbursement for some services can be billed at higher rates depending on documented time spent counseling the patient.24,25 The Centers for Medicare and Medicaid Services has recently released a billing guide for physician assistants, nurse practitioners, and clinical specialists.26 Reimbursement for APNs who have a Medicare provider number can now bill Medicare B for seeing hospice patients, but only if they are not employed by a hospice agency. This new bill (P.L. 108173) was passed by Congress on December 8, 2003.27 Now APNs must advocate for reimbursement for those who are employees of hospices.
Geriatric Nursing
Volume 25
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A Model of an EOL Care Facilitator The following model applies the principles of EOL care to actual practice. It is based on 30 years of geriatric nurse practitioner experience working with elderly patients with advanced chronic illness during the final phase of their lives. GAPN service is particularly helpful for chronically ill patients who have had a recent hospitalization for an exacerbation of a chronic illness, require frequent medication adjustments because of unstable illness, have recurrent acute illnesses, need advance care planning or sophisticated symptom management, or are experiencing functional decline and need evaluation of the current living situation. Patients may be referred to the GAPN by the patient’s primary care provider or others, such as home health nurses, through their PCP. Patients may be enrolled in hospice or may be hospice “graduates” who have improved and are stable although frail. If these patients need the intense palliative care services of hospice again, the GAPN makes the referral to hospice with physician authorization and follows the case until the patient’s death. Often GAPN diagnostic skills, pharmacologic knowledge, and clinical judgment are complementary to the palliative care knowledge and experience of hospice nurses. For example, a GAPN may help the hospice nurse properly diagnose a distressed patient with wheezing and dyspnea as having an acute exacerbation of congestive heart failure and therefore needing diuresis in addition to morphine. M O D E L I M P L E M E N TAT I O N Recognizing the comprehensive needs of elders with advanced chronic illness and a gap in delivery of services, the creation of the role of geriatric nurse practitioner (GNP) as EOL care facilitator was negotiated in 2001 with the Program on Aging and the Division of General Internal Medicine at the University of North Carolina School of Medicine at Chapel Hill. The role was funded for 20% time, making the GNP available for this practice 8 hours per week. All services were delivered in the community and could be billed under Medicare B with the hope that the Medicare reimbursement would be adequate to fund the position. The service advertised to referring providers was titled “Transitions: Living and Dying Well; The Geriatric Nurse Practitioner as End-of-Life Care Provider.” The referral criterion was that the PCP believed it was possible for the patient to die from advanced chronic illness within 1 year. Recognizing the limited prognosis and need for a palliative care approach for these sick patients, the time-consuming nature of such care, and the fact that the GPN would visit the patient in the community made GAPN services appealing to patients, families, and primary care providers. For patients and families, the program was titled “Transition Care: Living Well while Facing Health Challenges.” The services were explained with the use of an illustrated brochure. Many of the patients had never been told that they would die from the end stage of their chronic illness and did not see themselves as “terminally July/August 2004
ill.” Therefore, the focus was on the positive concept of living well. This emphasis—to live fully and comfortably in one’s final phase of life—is also part of the hospice philosophy. These patients were visited in their home setting, whether their private residence or an institutional home such as a nursing home, adult care facility, or an assisted living facility. Older adults who are gradually failing in nonacute settings can use this time to consider their quality of life and their priorities, values, and goals, as well as to engage in advance care planning. SERVICES OFFERED IN 5 DOMAINS OF CARE Available services are organized into 5 domains of care, each of which applies EOL principles of care and addresses concerns of patients.
Domain 1: Assessment of the Living Situation The patient’s setting, functional ability, needs, and caregiver help are assessed to determine whether the current situation is adequate to meet the patient’s ongoing needs. Often problems with function and the proper level of care are not immediately obvious and need professional assessment in the patient’s setting, whether home or institutional. For example, one referral was a hospice graduate, a 97year-old woman with congestive heart failure and dementia, who was earlier discharged home from the hospital to the care of hospice. With excellent hospice care, this frail patient improved and became ineligible for hospice care, but she needed ongoing professional supervision and attention to multiple needs to be able to remain at home. The GAPN monitored her heart disease and modified her treatment to include gentle conditioning exercises using physical therapy. Morphine elixir was administered only as needed, rather than in scheduled doses, for mild episodic shortness of breath. Additional interventions included the education and support of her family, the suggestion of hiring an in-home aide, and coordination of care, which enabled her to continue living at home. In another case, following hip fracture and pinning, a resident with dementia was referred to a skilled nursing facility for rehabilitation, rather than returning to her assisted living facility with subsequent outpatient physical therapy visits. This provided a safe, more supervised environment.
Domain 2: Symptom Management and Enhancement of Quality of Life This area of care relies on the GAPN’s knowledge and skills in managing advanced chronic illness, implementing palliative care, and helping patients decide how to get the most out of the time and energy they have remaining. An example involved care of an assisted living resident whose last goal in life was to spend her final days at a summer home with her daughter. Initially the resident was quite depressed, debilitated, and seemed unable to reach this goal. After a thorough assessment, the GAPN increased the patient’s antidepressant medication, ordered 235
occupational and physical therapy for strengthening and improving function, and customized nutritional support with the help of the family. The patient improved considerably and was able to spend her last days very contentedly in her summer home.
basic faith in Christianity. Arranging a family communion service in the nursing home brought reassurance, shared worship, and resolution of this concern.
Domain 3: Advance Care Planning
This domain requires that a GAPN build ongoing relationships of trust and continuous care, often across settings, that the patient and family may count on until the patient’s death. This includes collaborating with new providers and providing a reassuring, guiding presence during acute illnesses, discharges, and transfers. A personal example concerned a 97-year-old, mildly demented woman who fell and broke her hip and was transferred to the hospital. I met the patient and her family in the emergency department and helped with the decision to pin the hip as well as related EOL decisions. This included rescinding her DNR order during the surgery, but not prolonging heroics if complications were not easily reversed. During the hospitalization, I helped the family understand the need for a 24-hour sitter. My daily visits were not reimbursable but were necessary for quality care. Discharge to the nursing home brought a transition to a new facility and a physician who welcomed my input and visits, which were reimbursable under Medicare B. When the patient developed terminal pneumonia and the family wanted comfort care, I consulted with an on-call hospice nurse colleague to help achieve excellent symptom relief so that this patient would die comfortably. When the patient died during the night, I went immediately to support the family. During this visit they thanked me for my regular visits, including working with the nursing home staff, and for assisting the family in making difficult decisions. They felt they would not have been able to keep the patient at home for 1.5 years before the fall without the ongoing care and guidance through the Transitions program. Communication regarding a patient’s care at the end of life often suffers.29 Adequate information and support for nursing home staff and other residents are often neglected when a patient dies. When a family did not choose to return to the nursing home after the death of a 102-yearold patient, a brief gathering around the patient’s bed, which included the GAPN, a few staff members, and the resident’s neighbors, was held to reminisce, read a scriptural passage, and pray. This seemed to allow an experience of respectful closure to honor this well-loved patient.
Advance care planning involves helping patients face their final phase of life and providing the opportunity for them to plan how they hope to die. When possible, the GAPN opens a conversation about feelings and wishes concerning death and eventually encourages completion of advance directives, including appointment of a health care power of attorney and discussion of treatment preferences. Specific EOL orders may result, such as “do not resuscitate (DNR)” “do not hospitalize,” or “do not tube feed.” Any patient’s wishes for continued aggressive life-prolonging treatment are also respected. If a patient is unable to have this discussion or complete advance directives, the GAPN is able to counsel family members about end-of-life treatment preferences in accordance with what the patient would want. (See advance care planning booklets and worksheets for the GAPN to use with patients or families at the Nurse.org Web site.28) For example, a patient with end-stage Alzheimer’s had not wanted tube feeding or prolongation of dying. His wife was guided through the process of deciding not to treat a bout of recurrent aspiration pneumonia. Two other patients signed DNRs based on informed discussions. Facilitated by planning ahead, the family of a patient with dementia, hip fracture, and subsequent pneumonia that was unresponsive to oral antibiotics decided not to send her back to the hospital but allow her to die comfortably in the nursing home. Many years of experience as a GNP have illustrated that advance care planning usually results in avoiding a crisis during active dying, honoring patient wishes, and allowing grieving while making good memories of last moments together.
Domain 4: Patient and Family Counseling—Emotional, Social, and Spiritual Patient and family counseling involves supporting patients and their families, helping them become aware that the patient’s illness is life-threatening, and ushering in “special time” that allows them to cherish relationships and spend time together. A GAPN may be involved in counseling for grief, anger, guilt, or family conflict or may refer the patient to a social worker, other counselor, or clergy. Examples of needs that merited counseling included a patient who was very anxious about her faith in the face of death and another who struggled with being a burden to her family. For a third patient who was bitter and had much unfinished business, arrangements were made for a psychiatric nurse therapist to come regularly to the nursing home to counsel the patient in preparation for death. Another resident was concerned about the “salvation” of her children, who did not believe as she did but shared a
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Domain 5: Continuity, Communication, and Coordination of Care
E A R LY P I L O T D ATA A year of testing this model resulted in the author’s accepting referrals and caring for 25 patients, seeing about 5 patients in various sites during an 8-hour per week practice. Activities included educating providers on the model and referrals; assessing and managing the patient; collaborating with the referring PCP, families, staff members, and other professionals; driving to and coordinating care across sites; reviewing lab results; dictating; and helping with billing. The
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unique aspect of this role that enhanced its feasibility is the combination of a broad scope of care, the use of GAPN knowledge and skill in advanced chronic disease and symptom management, following patients across settings, and the fact that the services are reimbursable by Medicare. Brief evaluation forms gathered from families of deceased patients showed their satisfaction and appreciation for the individualized, ongoing care that their loved one received. Physicians especially valued the care, time saved for them, and feedback provided. The work of providing quality nursing care to elders who were completing their lives was very fulfilling. Funding has been provided to the author for formal evaluation of the model. There is a great need for other GAPNs to evaluate clinical practice models in which they deliver EOL care to those with advanced chronic illness.30,31 CONCLUSION: AN APPROACH TO TRANSITION CARE AND FUTURE WORK FOR GAPNS GAPNs knowledgeable in end-of-life care are uniquely qualified to meet the needs of older adults dying from advanced chronic illness in a compassionate, holistic, competent, and cost-effective way. The model described here, using a gerontological advance practice nurse as an EOL care facilitator, is one way to facilitate a good death—that is, to help patients complete their lives comfortably and in keeping with their wishes. Professional challenges lie in educating patients and society at large about the capabilities of the GAPN in end-of-life care and in removing regulatory, reimbursement, and other barriers to this practice. REFERENCES 1. Ebersole P, Enloe CH. Geriatric nurse practitioner—vital to hospice and home health. Caring 1983;2(6):48-50. 2. Kuebler KK. The palliative care advance practice nurse. J Palliat Med 2003;6:707-14. 3. Gabany JM. Factors contributing to the quality of end-of-life care. J Am Acad of Nurse Pract 2000;12: 472-4. 4. Sherman DW, Matzo ML, Rogers S, et al. Achieving quality care at the end of life: a focus on the end of life nursing education consortium (ELNEC) curriculum. J Prof Nurs 2002;18:255-62. 5. Matzo ML, Sherman DW, eds. Palliative care nursing: Quality care to the end of life. New York: Springer, 2001. 6. Ferrell BR, Coyle N, eds. Textbook of palliative nursing. Oxford, England: Oxford University Press, 2001. 7. Palliative care resources for nurses. Available at www.palliativecarenursing.net. Cited April 28, 2004. 8. American College of Nurse Practitioners End of Life Task Force resources. Available at www.nurse.org/acnp/endoflife/index.shtml. Cited on April 28, 2004. 9. Lynn J. Serving patients who may die soon and their families: the role of hospice and other services. JAMA 2001;285:925-32. 10. Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage 2001;22:727-37. 11. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA 1999;281:163-8. 12. Last Acts Coalition Web site. Available at www.lastacts.org. Cited on April 28, 2004. 13. Academy of Nursing Leadership on End-of-Life Care resources. Available at www.palliativecarenursing.net. Cited on April 28, 2004. 14. Lynn J. Measuring quality of care at the end-of-life: a statement of principles. J Am Geriatr Soc 1997;45:526-7. 15. Field MJ, Cassel CK, eds. Approaching death: improving care at the end-of-life. Institute of Medicine Report. Washington, DC: National Academy Press, 1997. 16. Precepts on End-of-Life Care. Available at www.lastacts.org/docs/profpre cepts.pdf. Cited on April 28, 2004. 17. Hospice and Palliative Care Nurses Association Web site. Available at www.hpna.org. Cited on April 28, 2004.
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18. American College of Nurse Practitioners Web site. Available at www.nurse.org/acnp. Cited on April 28, 2004. 19. National Gerontological Nursing Association Web site. Available at www.ngna.org. Cited on April 28, 2004. 20. Academy of Nursing Leadership on End-of-Life Care endorsement of Last Acts Precepts. Available at www.palliativecarenursing.net/pcare_commitment.html. Cited on April 28, 2004. 21. Lacey K, Minarik, P. Medicare reimbursement of ANPs. Am J Nursing 2000;100:24AAA-DDD. 22. Medicare regulations regarding nurse practitioners. Available at: www.nurse.net/medicare/regs/fedreg.58863.html. Cited on April 28, 2004. 23. American Academy of Nurse Practitioners summary of Medicare information on billing. Available at www.aanp.org/Practice+Policy+and+Legislation/ Practice/Billing/Medicare.htm. Cited on April 28, 2004. 24. Von Gunten C, Ferris F, Kirschner C, Emanuel C. Coding and reimbursement mechanisms for physician services in hospice and palliative care. J Palliat Med 2000;3:157-64. 25. Center to Advance Palliative Care Recommendations to Centers for Medicare and Medicaid Services Regarding End-of Life Care. Available at www.capc.org/content/177. Cited on April 28, 2004. 26. Medicare billing guidelines for NPs. www.medicarenhic.com/providers/billing/ nonphygd_mar04.pdf. Cited on April 28, 2004. 27. Public Law 108-173, the Medicare Prescription Drug, Improvement and Modernization Act of 2003, was signed into law December 8, 2003. frweb gate.access.gpo.gov/cgi-bin/useftp.cgi?IPaddress=162.140.64.88& filename=publ173.pdf&directory=/diskb/wais/data/108_cong_public_laws. See Section 408, p. 206-7. Cited on April 28, 2004. 28. Advance care planning booklet and worksheet. Available at www.nurse.org/ acnp/endoflife/advd.care.res.shtml. Cited on April 28, 2004. 29. Hanson LC, Henderson M, Menon M. As individual as death itself: a focus group study of terminal care in nursing homes. J Palliat Med 2001:5:117-25. 30. Emnett J, Byock I, Twchig JS. Advanced practice nursing: pioneering practices in palliative care and position statement. Monograph available at www.pro motingexcellence.org/apn. Cited on April 28, 2004. 31. Dahlin C, Campbell M, McCorkle R. Advanced practice nurses’ role in palliative care: a position statement from American nursing leaders. Monograph available at www.promotingexcellence.org/apn. Cited on April 28, 2004.
ADDITIONAL RESOURCES 1. AGS Panel on Persistent Pain in Older Persons. J Am Ger Soc 2002;50:S205-24. 2. Callanan M, Kelley P. Final gifts: understanding the special awareness, needs and communications of the dying. New York: Bantam Books, 1992. 3. Doyle D, Hanks G, Cherny NI, et al. Oxford Textbook of Palliative Medicine. 3rd ed. New York : Oxford University Press, 2004. 4. Heffner J, Byock I. Palliative and end of life pearls. Philadelphia: Hanley & Belfus, 2002. 5. Kuebler KK, Berry PH, Heidrich DE. End of life care: clinical practice guidelines. Philadelphia: Saunders, 2002. 6. Lipman AG, Jackson KC. Evidence based symptom control in palliative care. New York: Pharmaceutical Products Press, 2000. 7. Palliative Care Series. Am J Nursing. 2002-2004. 102(5):26-31; 102(7):26-34; 102(9):48-57; 102(11):36-42; 103(1):48-55; 103(3):50-58; 103(5):52-60; 103(7):42-52; 103(9):42-52; 103(11):48-58; 104(1):48-57. 8. Pocket Guide to Hospice/Palliative Medicine. American Academy of Hospice and Palliative Medicine. Available at www.aahpm.org/bookstore. 9. Wiesman D. End of Life/Palliative Education Resource Center (EPERC). Available at www.eperc.mcw.edu. 10. Wrede-Seaman L. Symptom management algorithms: a handbook of palliative care. Providence Yakima Medical Center: Central Washington Service Area. 1999. Available at www.Intelli-card.com. 11. Sherman DW, Matzo ML, Coyne P, Ferrell BR, Penn BK. Teaching symptom management in end-of-life care: The didactic content of teaching strategies based on the end-of-life nursing education curriculum. J Nurs Staff Dev 2004;20:103-15.
MARTHA L. HENDERSON, GAPN-BC, MSN, MDIV, DMIN, is an assistant professor in the School of Nursing and School of Medicine at the University of North Carolina, Chapel Hill.
Acknowledgements The author thanks Barbara Germino, RN, PhD; Lisa Munsat, MSN, APRN-BC; and Nancy Milio, RN, PhD for their assistance in revising this article. 0197-4572/$ - see front matter © 2004 Elsevier Inc. All rights reserved. doi:10.1016/j.gerinurse.2004.06.014
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