Access to High Quality End-of-Life Care in Nursing Homes

At least one in four Americans dies in a nursing home, and considerable evidence indicates that many nursing home residents receive end-of-life care that is not optimal. For instance, approximately 25% of residents with daily cancer pain receive no pain medications, and residents are often transferred to an acute care setting to receive aggressive treatment in the last weeks of life. It is not surprising, therefore, that families often express dissatisfaction with the end-of-life care that their loved ones receive in nursing homes.

Efforts to improve end-of-life care must be multi-faceted and should include care throughout the trajectory of illness. Improving care will require careful attention to pain and symptom management and advance care planning, and must involve a variety of stakeholders, including residents, families, nursing home administration, regulators, payers, and clinicians. Finally, these efforts should include internal palliative care programs and collaboration with community hospice agencies, when indicated.

• American Geriatrics Society (AGS) position statement Care of Dying Patients. http://www.americangeriatrics.org/products/positionpapers/careofd/shtml. Access verified November 30, 2005.
• Bernabei R, Gambassi G, Lapane K, et al. Management of pain in elderly patients with cancer. JAMA. 1998;279:1877-1882.
• Clinical Practice Guidelines for Quality Palliative Care. National Consensus Project for Quality Palliative Care. www.nationalconsensusproject.org; May, 2004. Access verified December 10, 2005.
• Levy CR, Fish R, Kramer AM. Site of death in the hospital versus nursing home of Medicare skilled nursing facility residents admitted under Medicare's Part A Benefit. J Am Geriatr Soc. 2004;52(8):1247-1254.
• Miller SC, Gozalo P, Mor V. Hospice enrollment and hospitalization of dying nursing home patients. Am J Med. 2001;111(1):38-44.
• Teno J, Clarridge B, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291(1):88-93.
• Teno J. The Brown atlas of dying in the United States: 1997-2001. http://www.chcr.brown.edu/dying/brownsodinfo.htm. Access verified December 10, 2005.

Rationale: Nursing homes should ensure that all of their residents receive high-quality end-of-life care, including pain and symptom management, adequate information and control over decisions, and emotional and spiritual support. These are core domains of end-of-life care for older adults, and should be available to all older adults near the end of life, regardless of the site of their care. As the number of Americans dying in nursing homes every year continues to grow, it will become increasingly important to ensure that these residents receive end-of-life care in these domains that is at least as good as the care that is available to community-dwelling older adults.

• Clinical Practice Guidelines for Quality Palliative Care. National Consensus Project for Quality Palliative Care. www.nationalconsensusproject.org; May, 2004; Access verified December 10, 2005.
• American Geriatrics Society (AGS) position statement Care of Dying Patients. http://www.americangeriatrics.org/products/positionpapers/careofd/shtml. Access verified December 10, 2005.

Rationale: Some nursing homes are able to provide comprehensive palliative care that includes services that are equivalent to hospice care. However, nursing homes vary widely in terms of size, financial status, and population, and not all will be able to develop comprehensive palliative care programs. When residents reside in nursing homes without an active palliative care service, community hospices are often able to identify multiple unmet palliative care needs. In addition, hospice care under these circumstances has been associated with improvements in several outcomes, including better pain assessment and management, and lower rates of inappropriate medication orders and physical restraint use. Families also perceive that hospice improves nursing home end-of-life care, and hospice is associated with improved satisfaction in other settings as well.

In the absence of data that demonstrate that one approach is superior, nursing homes should pursue either as a way of improving end of life care for residents and their families. However, in light of growing data that demonstrate hospice's effectiveness in providing end-of-life care, the package of services administered by a hospice interdisciplinary team should be considered as the gold standard of end-of-life care, and nursing homes that use internal palliative care programs should strive to provide care that is equivalent to the care that hospice offers.

• Baer WM, Hanson LC. Families' perception of the added value of hospice in the nursing home. J Am Geriatr Soc. 2000;48:879-882.
• Casarett D, Hirschman K, Henry M. Does hospice have a role to play in end-of-life care in nursing homes? J Am Geriatr Soc. 2001;49:1493-1498.
• Casarett D, Karlawish J, Morales K, Crowley R, Mirsch T, Asch DA. Improving access to hospice care in nursing homes: A randomized controlled trial. JAMA. 2005;294:211-217.
• Miller S, Mor V, Wu N, Gozalo P, Lapane K. Does receipt of hospice care in nursing homes improve the management of pain at the end of life? J Am Geriatr Soc. Mar 2002;50(3):507-515.
• Miller SC, Mor V, Teno J. Hospice enrollment and pain assessment and management in nursing homes. J Pain & Sympt Manage. 2003;26(3):791-9.

Rationale: Although hospice is not the right choice for every resident, hospice is a mandated benefit for all residents with Medicare and VA coverage, and to most residents with Medicaid or private insurance. However, most nursing home residents do not enroll in hospice, and those who do typically enroll in the last days or weeks of life. When nursing homes do not offer end-of-life care that is equivalent to the care that hospice offers, this lack of hospice access is an ethical problem of justice, or fairness, which deserves attention. Therefore efforts to increase access to hospice must include proactive efforts to initiate these discussions and to address misconceptions. Residents and families should be informed of the advantages and disadvantages of hospice and palliative care, including possible differences in cost. These efforts should make use of key decision points in a resident's illness trajectory (e.g. change in status, readmission from acute care).

To accomplish this, training of long term care staff will be essential. In addition, it is no less important to provide training for professional and non-professional hospice staff. The nature of the long term care population and the complex social and regulatory environment in which care is delivered in nursing facilities presents unique challenges. Not every hospice organization is adequately prepared to care for nursing home residents or to contract with a nursing home to provide care. Therefore, in order to improve the quality of hospice care for nursing home residents, community hospice staff should undergo training in principles of geriatric care, and the essentials of long term care, including the assessment and management of frail elders, collaborative care planning, and nursing home systems and regulations.

• National Trend Summary 2002. National Hospice and Palliative Care Organization, Washington DC; 2003.
• Chen H, Haley WE, Robinson BE, Schonwetter RS. Decisions for hospice care in patients with advanced cancer. J Am Geriatr Soc. 2003 Jun;51(6):789-97.
• Casarett D, Crowley R, Hirschman K. How should clinicians describe hospice to patients and their families? J Am Geriatr Soc. 2004;52:1923-1928.

Rationale: Some core hospice services such as pain management are ideally suited for the care of patients with cancer. However, most nursing home residents die of multiple nonmalignant conditions, often with concomitant dementia. These residents may have very different palliative care needs, including management of agitation, delirium, and pressure ulcers. Although many hospices have become increasingly skilled in providing care to patients with chronic conditions, others continue to focus on patients with cancer. Therefore, hospices and nursing homes will need to work together to ensure that services meet these patients' needs.

• Mitchell, SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004; 164(3): 321-6.
• Sachs GA, Shega JW, Cox-Hayley D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004;19:1057-1063.
• Volicer, L. Hospice care for dementia patients. J Am Geriatr Soc. 1997; 45: 1147-49.

Rationale: Whether nursing homes develop internal palliative care programs or rely on contracts with community hospices, they should ensure that their residents have access to high quality palliative care. Principles and standards of palliative care for older adults have become well-established and widely endorsed. Core elements include physical and psychological comfort, emotional and spiritual well-being, information and control over health care decisions, and the family's well-being during the resident's illness and their adjustment after the resident's death. Quality of care near the end of life should be a part of evaluations by JCAHO, CMS, and state surveyors. However, measures of quality hospice and palliative care in the nursing home should be developed and evaluated prior to their application in state surveys or by accrediting agencies. These measures should clearly define quality end-of-life care and quality hospice services, including desirable processes and outcomes of care.

Rationale: A variety of financial disincentives create barriers to hospice referral. These barriers may make hospice an undesirable choice for residents and may also make nursing homes less likely to refer. From the nursing home's perspective, when a resident elects the Medicare Hospice Benefit rather than the Skilled Nursing Home Benefit, the nursing home receives a lower reimbursement rate through private payment from the resident or Medicaid. From the resident's perspective, the Skilled Nursing Home Benefit is more affordable than paying privately for room and board care in the nursing home under the Medicare Hospice Benefit. Together, these factors create a substantial disincentive to hospice enrollment for both the nursing home and the resident and his or her family. These and related reimbursement systems need to be reevaluated and redesigned to eliminate inappropriate barriers to hospice access. Furthermore, nursing homes should be able to facilitate this choice without the concern about financial risks of doing so. Finally, hospice care should be recognized as skilled care for reimbursement, allowing facilities to provide hospice services within the skilled benefit to the nursing home.

• Mitchell, SL, Kiely DK, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004; 164(3): 321-6.
• Sachs GA, Shega JW, Cox-Hayley D. Barriers to excellent end-of-life care for patients with dementia. J Gen Intern Med. 2004;19:1057-1063.
• Volicer, L. Hospice care for dementia patients. J Am Geriatr Soc. 1997; 45: 1147-49.