Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

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Improving Care for the Dying:
The Role of Palliative Care in Nursing Homes

Holly D. Sivec

This inaugural column speaks to the growing number of people who are faced with making sensitive, informed choices about loved ones' needs for palliative care when residing in long-term care settings. Chances are, if you are in the process of researching long-term care options, you already have a list of questions and concerns that is a mile long. What should I be looking for when I select a nursing home for a loved one? Will my loved one's doctor continue to provide his or her care in a long-term care facility? What services does Medicare cover? How can I assess the quality of care a nursing home provides? Will the facility actively and routinely assess and treat pain and other symptoms that may affect my loved one's quality of life?

This current issue of Innovations in End-of-Life Care focuses on integrating palliative care into the services provided in nursing home settings. Palliative care is comprehensive, active care for people who are gravely ill or dying. The comfort and well-being of the patient is paramount. Palliative care attends to the relief of pain and symptoms. It also provides emotional and spiritual support to the patient and family and bereavement support to the family after the patient dies.

Dr. Joan Teno opens this issue with her editorial in which she details the changing landscape of nursing home care. Dr. Teno offers insights into the many constraints under which nursing homes operate. She reminds us how important interpretation is, when facing well-meaning regulations. Nursing homes have not traditionally been on the cutting edge of innovation because they are a highly regulated industry. Mandates to offer the "highest practicable physical, mental and psychosocial well-being" can in fact stand in the way of exemplary end-of-life care, unless nursing home staff and leadership are educated to recognize the distinct needs and rights for choice and comfort care among their patients who are dying. Dr. Teno also reminds us that in addition to working to align regulatory pressures with current best practice, nursing homes face the huge challenge of running a business with a workforce that is constantly in flux. High staff turnover is a problem among all nursing homes.

In this issue, we also hear from leaders working both as staff within and as consultants from outside nursing homes to offer exemplary care in spite of these regulatory, financing, and staff turnover barriers, which face all nursing homes. The Featured Innovation and Promising Practice both aim to create an enhanced skill base by using nurse experts to work with existing staff and mentor best practices. Reading about their efforts will give you an idea of what to look for in a facility that is striving to address the need for palliative care, as well as a better sense of just how challenging it can be to address these goals in a nursing home setting.

Featured Innovation

At six nursing homes in Maryland, Genesis ElderCare and the University of Pennsylvania School of Nursing conducted a three-year joint intervention study to compare and explore the benefits of integrating palliative care into nursing homes. They designed new tools and new routines in care to improve pain and symptom management, advance care planning, and psychosocial and spiritual support for patients and families, and then carried out this enriched plan of care in four out of six nursing homes. They are studying what they learned to answer the question "How can we improve the way we care for the dying?"

Based on their findings, Howard Tuch, MD, director of Palliative Care Services at Genesis ElderCare and Pamela Parrish, RN, BA, CHPN, the nurse palliative care expert consultant to the nursing homes discuss with Innovations what they learned about staff education and community involvement and its role in providing care at the end of life. When palliative care has a regular presence in a long-term care facility, it can be empowering for all involved. When a nurses sees that a resident's quality of life has improved and that the patient is better able to perform activities of daily living, it reinforces the value of the extra measures. More effective assessment, communication, and management of pain can have a significant impact on quality of life. Communication can also have a significant impact in terms of advance care planning. Asking residents and families about their values and goals for care is a wholly different and more personalized process than focusing solely on the questions on the advance directives, such as DNR (do not resuscitate) orders. Equipped with the proper guidance and tools to do so, the staffs in these nursing homes where a palliative care process was established felt they were able to improve the way they cared for the dying.

Promising Practice

Therese Rochon, RNP, MA, MSN, a family nurse practitioner at Home and Hospice Care of Rhode Island (HHCRI) started a palliative care consultation service for nursing home residents. This effort is distinctive in that it highlights the role of the nurse practitioner in providing consultation on pain and symptom management, and coordinating other aspects of palliative care for nursing home residents.

It also unravels a Gordian knot faced by patients and families who are paying for room and board at a skilled care facility (nursing home that offers a particular level of care) through their Medicare benefit, yet may want to have access to hospice-like services. The way the Medicare regulations are written, if a nursing home resident on Medicare chooses to elect the Medicare Hospice Benefit, that resident loses the room and board reimbursement even as he or she gains access to a whole set of otherwise comprehensive palliative services. Paid for through the Medicare Part B reimbursement for doctor and nurse practitioner visits, a palliative care consultation service can be a godsend for families who cannot afford to pay for room and board, yet need access to specialized expertise in pain and symptom management at the end of life, and attention to psychosocial and spiritual issues. For residents who are paying for the nursing home room and board through Medicaid, there is no conflict, as Medicaid will continue to pay for room and board, even if a resident elects and is eligible for the Medicare Hospice Benefit.

Even though these two programs chose two different paths, both seek the same end: to improve the way we care for people at the end of life. I've used these reports on current work to pull together a short list of questions that you may want to discuss with the nursing home administrator or director of nursing at the outset, in addition to other questions, as a way of assessing the commitment and capacity of the institution to provide all facets of care. These questions can also be valuable at a later date, as the need for palliative care becomes a pressing issue. You may want to share this column with these administrators as a way of opening a conversation. Do keep in mind, not all nursing homes will have a palliative care program in place. This simple yes or no answer does not immediately determine the quality of care provided by the facility. Rather, it should be a springboard for discussion. The deeper question is whether the administration is aware of the many issues involved with providing the best care for a patient at the end of his or her life. When nursing homes show attentiveness to these details it signals a commitment to quality of life, no matter what stage you or your loved one are in.

Asking Questions

• Is there a nurse on staff or regularly available to mentor staff who has expertise in palliative care? Does the nursing home seek outside expertise?

• Does the home have ongoing training for staff in assessing and treating pain and other symptoms prevalent near the end of life?

• Is there a plan in process for providing palliative care at this home? If not, do they have a relationship with a consultation service? Does the nursing home have established relationships in place with Hospice organizations? Do they refer patients to the Medicare Hospice Benefit?

• What happens when a patient dies in this facility? How is the family's privacy respected? Can the whole family stay with the patient in the last moments of life?

• How long have current people been in key leadership positions at this home? By key leadership positions, I mean the director of nursing, the lead administrator, director of social services, and medical director. Dr. Tuch and his fellow researchers found that the nursing home that was able to integrate their intervention most fully and with the most success, was the one in which the people in these roles remained stable throughout the three-year period of the study.

• What kinds of ties and links connect the long-term care facility with its community? Do the workers live nearby? Are there volunteers from the community? To what extent is the facility welcoming of community/outside activity? Again these researchers speculate that the degree to which a nursing home is integrated into the community from which the resident and his or her family comes, is a good indirect measure for the quality of care offered at that home.

Both of the efforts spotlighted here have champions who care deeply about their organization's mission—to provide exemplary end-of-life care. They acknowledge dying as part of the life cycle, and see care of patients near the end of life as an essential piece of the complex care nursing homes provide. That does not mean that they or their organizations always do provide exemplary care, being human like the rest of us, but it does seem like a good place to start.

Where to Find More Information

Resources and tools

Aging with Dignity

AARP Fact Sheet: Choosing a Good Nursing Home

AARP Fact Sheet: Private Long-Term Care Insurance

Eldercare Locator
1-800-677-1116

ElderWeb: Different Types of Long-Term Care Facilities

Last Acts Consumer/Family Resources for End-of-Life Care

Medicare: Nursing Home Checklist
1-800-MEDICARE

Medicare: Nursing Home Compare (tool)
1-800-MEDICARE

National Citizens' Coalition for Nursing Home Reform Fact Sheets

National Long-Term Care Ombudsman Resource Center

Pain and Palliative Care Reporter

Partnership for Caring

For further reading

The following is a list of books that have been well received in the press and are known for their easy-to-follow format and breadth of useful information. All are available on Amazon.com. A librarian can refer you to additional sources.

Bornstein RF, Languirand MA. When Someone You Love Needs Nursing Home Care: The Complete Guide. New York: Newmarket Press, 2001.

Davis R. The Nursing Home Handbook: A Guide to Living Well. Avon, MA: Adams Media Corporation, 2000.

Ilminen GR. Consumer Guide to Long-Term Care. Madison, WI: University of Wisconsin Press, 1999.

Lieberman T (ed.). Consumer Reports Complete Guide to Health Services for Seniors: What Your Family Needs to Know About Finding and Financing, Medicare, Assisted Living, Nursing Homes, Home Care, and Adult Day Care. New York: Three Rivers Press, 2000.

Morse M. Before You Choose: Identifying Quality Care in Nursing Homes. Denver: CEMM, 1995.

Rantz M, Popejoy L, Zwygart-Stauffacher M, Polowy J. The New Nursing Homes: A 20-Minute Way to Find Great Long-Term Care. Minneapolis: Fairview Press, 2001.

Silin PS. Nursing Homes: The Family's Journey. Baltimore: Johns Hopkins University Press, 2001.