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

Now is the Time to Embrace Nursing Homes
as a Place of Care for Dying Persons

Joan M. Teno, MD, MS

[Citation: Teno, JM. Now is the time to embrace nursing homes as a place of care for dying persons. Innovations in End-of-Life Care. 2002;4(2), www.edc.org/lastacts]

In my experience, requests for funding to improve the quality of end-of-life care in nursing home are often met with the statement that you have the wrong goal—rather, your priority should be avoiding the use of nursing homes. In fact, how to avoid institutionalization of frail, older persons has been an important research priority. This goal reflects the low esteem that many have for nursing homes, and ignores the fact that nursing homes are the final residence for many frail persons dying of chronic, progressive illnesses. Nursing homes are providing this care in the face of substantial challenges—such as declining reimbursement, staffing shortages, and high staff turnover. In the United States, as well as other industrialized nations, nursing homes are increasingly becoming the place of care and site of death. In both England and Australia, one in five persons now dies in a nursing home.¹ In the United States, currently, one in four persons dies in a nursing home, and in six US states, the rate is more than one in three.² By 2040, nearly one in two persons will die in a nursing home.³

Nursing homes in this country now must provide care for persons admitted under a range of circumstances: recently hospitalized persons needing short-term rehabilitation; frail persons, many with cognitive impairments, who need custodial and skilled nursing care; and dying, frail, older persons who lack a caregiver or whose caregivers cannot meet their needs for care. Nursing homes are taking on an increasing role in caring for the dying at a time when the US federal government has imposed incentives to discharge patients "quicker and sicker," and reduce health care costs through a prospective payment system (PPS). Financial pressures have led many nursing homes to file for bankruptcy.

Attempts to curtail health care costs are occurring at the same time that important concerns have surfaced about the quality of care for nursing home residents. Such concerns have led to regular state inspections of nursing homes, the results of which are already being posted on the Internet along with information for consumers on how to choose a nursing home.⁴ Starting in the Fall of 2002, ten quality indicators, including pain management, will be reported for all Medicare-certified US nursing homes. The main focus of these indicators reflects the primary goal of nursing homes as stated in the Omnibus Budget Reconciliation Act of 1987, "to attain or maintain the highest practicable physical, mental and psychosocial well-being of each resident."⁵ The key words, "highest practicable," reflect that the focus should be on maintaining the highest possible level of functioning in nursing home residents. The highest possible level of functioning has been interpreted such that weight loss and dehydration are seen as evidence of poor quality care. Translating this interpretation into state inspection standards and quality indicators creates goals that can be at odds with quality end-of-life care, which emphasizes patient preferences⁶ and an acceptance of decline as part of the dying process. One person, for example, may state a preference (through a written advance directive, or through their family invoking substituted judgment) to have a feeding tube placed when they reach a stage of advanced dementia, whereas another person may decide, based on concerns with quality of life, that their care should forgo artificial nutrition and hydration and focus, instead, solely on their comfort. Without accounting for these patient preferences in quality indicators and state inspections, cases in which health care providers act to respect patient preferences may be viewed as providing substandard care.

Current economic incentives also reward a focus on improving or maintaining function, and seem at odds with providing quality end-of -life care. Often, nursing homes do not want to refer a patient to hospice because it means losing more highly reimbursed, skilled nursing home days. As of 1999, Medicare reimbursement in the US is based on a nursing home resident being categorized into a Resource Utilization Group. Intensive rehabilitation and procedures such as the use of a feeding tube are rewarded with more reimbursement. Simply stated, the incentives are aligned to do more, and doing more can be at odds with the goal of quality end-of-life care to honor patient preferences and to provide comfort care.

Limited research to date suggests important opportunities to improve end-of-life care in nursing homes. Untreated pain is a prevalent problem among all nursing home residents.^7,8,9 Bernabei and colleagues found that nearly one in four cancer patients with daily pain did not have a WHO Step I drug prescribed.¹⁰ Communication is lacking, especially by physicians who are less involved in the care of nursing home residents.¹¹ To date, the existing evidence based on non-experimental studies suggests that hospice improves pain management¹² and satisfaction¹³ and reduces the rate of terminal hospitalizations.¹⁴ Yet, economic incentives are a major barrier to timely hospice referral.

Despite these obstacles, now is the time to embrace nursing homes as the place of care and site of death. Unless both federal and private insurers are willing to substantially increase funding to home care agencies to provide custodial care for frail persons at home, we must face the demographic imperative that nursing homes are now, and will continue to be, the major provider of care for the dying. Now is the time for research and demonstration programs to help nursing home residents, families, and health care providers to provide competent, coordinated, and compassionate end-of-life care. The programs described in this issue of Innovations in End-of-Life Care provide reason for optimism.

The featured program, part of a study conducted at six community nursing homes, represents a collaboration between a for-profit nursing home chain and an academic institution. Such collaboration is important, and should be celebrated and encouraged through various funding mechanisms. Howard Tuch, MD, director of Palliative Services, and Dr. Neville Strumpf, from the University of Pennsylvania School of Nursing, designed and implemented two interventions at four of the six community nursing homes in their study. All four intervention homes received education aimed at all staff members, including administration, as well as weekly consultation with a nurse specialist. A dedicated palliative care team was developed at two of the intervention homes. Not surprisingly, education of key staff was an important step in changing the organizational culture in all of the homes. This is an important step. Staff members need to understand why it is acceptable not to tube feed Mrs. Jones who suffers from severe dementia. A second aspect was educating staff that palliative care still involves "active" caring. Mrs. Jones may not be tube fed, but care is still "active" in that assiduous mouth care and assessing her comfort are important priorities. At all four intervention institutions, staff members were provided with the needed skills and tools to ensure that key concerns of pain, emotional support, and advance care planning now are a routine part of clinical care. Their final outcome evaluation analysis is yet to be published.

Tuch and colleagues encountered the expected obstacles and barriers, which reflect current financing and regulation of nursing homes in the United States. In 2001, I published, with colleagues, research findings in JAMA that documented a high rate of persistent severe pain (i.e., at least daily moderate pain) in all US nursing homes.¹⁵ During the study period, one in seven persons who resided in a nursing home had this level of pain at two assessments. An overly simplistic reaction is to blame the nursing home industry. When faced with this concern, I ask persons to imagine running a business where you are replacing more than half the workers every year. Not surprisingly, staff turnover impacted on the effectiveness of the Genesis ElderCare/UPenn palliative care intervention. Only one home had stable leadership throughout the entire three years of their study. One nursing home lost their administrator, director of nursing, social worker, and nurse educator. Trying to intervene with this level of turnover is daunting.

Addressing staff turnover is an important public policy concern. While this public debate is ongoing, future palliative care interventions will need to take into account this persistent reality of nursing homes. Education will need to be ongoing, and wherever possible, the principles of palliative care need to become part of the background fabric of the nursing home. This includes making pain the fifth vital sign to be routinely assessed, and screening all admissions for the need for palliative care services, as Tuch and colleagues did in the nursing homes participating in their intervention.

The federal government has already mandated that all nursing home residents have quarterly assessments. Although there are improvements that can be made to the resident assessment instrument, it does provide information that is relevant to the care of the dying. Building triggers for palliative care and resident assessment protocols for pain and other concerns would be potential means to institutionalize palliative care for all US nursing homes.

Genesis ElderCare has committed to continued funding of this program by intervening in an additional three nursing homes, but it is unclear whether it will be implemented throughout the 300 Genesis homes. In actuality, this might be the correct decision. Theirs is a time-intensive intervention. At this stage in program development, outcomes must first be described, and next steps should focus on how to make the intervention more efficient and cost effective (or at least cost neutral). It is commendable that Genesis ElderCare took on this challenge, but this large nursing home chain is faced with the fiscal realities of providing care for sicker patients with fewer reimbursements. As they analyze the outcome of the intervention, they will need to explore how to fine tune the intervention to enhance its efficiency and continue to address the barriers to its efficacy. In addition, nursing home leaders and researchers should vigorously pursue interventions at multiple levels, including addressing important concerns with reimbursement, staffing patterns, and regulations that impede quality end-of-life care in long-term care environments.

What are the alternatives to each nursing home having a palliative care team? Home and Hospice Care of Rhode Island (HHCRI), under the leadership of CEO Analee Wulfkuhle, developed a nurse practitioner pain and palliative care consult service, which is described in an interview with Therese Rochon, RNP, MA, MSN in this issue of Innovations. This program was born out of the realization that Rhode Island in eight short years has gone from a ranking of 25th in the United States of America for the number of persons dying in a nursing home to sixth.¹⁶ Additionally, Brown University Center for Gerontology and Health Care Research has conducted an audit of end-of-life care, which found that one in two persons was in a nursing home in his or her last month of life.¹⁷ Whereas HHCRI has developed a dedicated long-term care team, a substantial number of dying persons simply are not referred to hospice largely because of the financial incentives to keep persons on Medicare skilled days. The pain and palliative care consult service started with one part-time nurse practitioner (Ms. Rochon) in January 2001. Now, a year later, 151 nursing home residents have had pain and palliative care consults through this service, and a second nurse practitioner, Bonnie Evans, has been hired.

To date, the evaluation of this program is largely based on administrative data that attests to its sustainability. Ultimately, the success of this program will be gauged by whether nursing home residents are referred for pain and palliative care consults. After the initial start up, this program is averaging about 3 consults per week in the last 3 months and 14 follow-up visits per week. Many nursing homes are using the pain and palliative care consult service on an ongoing basis. Similar to the intervention of Tuch and colleagues, a key to the success of this program is the modeling by nurse consultants for nursing home staff of communication and assessment skills, and ongoing management of dying persons. About half the patients for whom the HHCRI palliative care service consulted have now died, and nearly one in four ultimately were referred to hospice consistent with the preferences of the patient/and or the family. However, many patients continue to receive active treatment, with the HHCRI nurse practitioner working with the nursing home staff to address those persons’ unmet needs for relief of pain and other symptoms, emotional support, spiritual counseling, and the family’s bereavement needs. Often, this involves working with the existing resources in that nursing home to provide the patient with comprehensive palliative care services.

One impact of the "baby boom" generation and improved medical care is that nursing homes will the place of care and site of death for growing numbers of frail, older persons dying of chronic, progressive illnesses. For those of us who live to the age of 85, we will have one in two chances of spending some time in a nursing home.¹⁸ Given the demographic imperative of an aging society, now is the time for public policy debate over the financing and regulation of nursing homes. While that debate is ongoing, innovations such as the ones by Genesis ElderCare/UPenn and HHCRI are desperately needed. Academia, hospice, and nursing homes need to partner to creatively work together to improve the final days of our frailest and most vulnerable citizens.

References

1. Maddocks I, Parker D. Palliative Care in Nursing Homes. New York, NY: Oxford University Press; 2001:147-56.[Return to Editorial]

2. See Facts on Dying www.chcr.brown.edu/DYING/usa_statistics.htm accessed on March 29, 2002. [Return to Editorial]

3. Brock DB, Foley DJ. Demography and epidemiology of dying in the U.S. with emphasis on deaths of older persons. The Hospice Journal. 1998;13(1-2):49-60.[Return to Editorial]

4. See The Official U.S. Government Site for People with Medicare http://www.medicare.gov/NHCompare/home.asp accessed on March 29, 2002. [Return to Editorial]

5. Omnibus Budget Reconciliation Act of 1987 (OBRA-87). 187:48865-49921. [Return to Editorial]

6. Teno JM, Landrum K, Lynn J. Defining and measuring outcomes in end-stage dementia. Alzheimer Disease and Associated Disorders. 1997;11(Suppl 6):25-9.[Return to Editorial]

7. Teno JM, Weitzen S, Wetle T, Mor V. Persistent pain in nursing home residents. Journal of the American Medical Association. 2001;285:2081.[Return to Editorial]

8. Won A, Lapane K, Gambassi G, Bernabei R, Mor V, Lipsitz LA. Correlates and management of nonmalignant pain in the nursing home. SAGE Study Group. Systematic Assessment of Geriatric drug use via Epidemiology. Journal of the American Geriatric Society. 1999;47(8): 936-942. [Return to Editorial]

9. Ferrell BA. Pain evaluation and management in the nursing home. Annals of Internal Medicine. 1995;123(9):681-687. [Return to Editorial]

10. Bernabei R, Gambassi G, Lapane K, Landi F, Gatsonis C, Dunlop R, Lipsitz L, Steel K, Mor V. Management of pain in elderly patients with cancer. SAGE Study Group. Systematic Assessment of Geriatric Drug Use via Epidemiology [see comments] [published erratum appears in JAMA 1999 Jan 13;281(2):136]. Journal of the American Medical Association 1998;279(23):1877-1882.[Return to Editorial]

11. DeSilva D, Dillon JE, Teno JM. The quality of care in the last month of life among Rhode Island nursing home residents. Medicine and Health/Rhode Island. 2001;84:195-198.[Return to Editorial]

12. Miller SC, Mor V, Wu N, Gonzalo P, Lapane K. Does receipt of hospice care in nursing homes improve the management of pain at the end of life. Journal of the American Geriatric Society. 2002;50(3):496-501.[Return to Editorial]

13. Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. Journal of the American Geriatric Society. 1997;45(11):1339-1344. [Return to Editorial]

14. Miller SC, Gozalo P, Mor V. Hospice enrollment and hospitalization of dying nursing home patients. American Journal of Medicine. 2001;111:38-44.[Return to Editorial]

15. Teno JM, Weitzen S, Wetle T, Mor V. 2001.[Return to Editorial]

16. See Facts on Dying www.chcr.brown.edu/dying/rhode_island_statistics.htm accessed on March 29, 2002.[Return to Editorial]

17. DeSilva D, Dillon JE, Teno JM. 2001.[Return to Editorial]

18. Kemper P, Murtaugh CM. Lifetime use of nursing home care [see comments]. New England Journal of Medicine. 1991; 324(9):595-600. [Return to Editorial]

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