Issues of Loss and Grief in Long-Term Care Facilities
Timothy J. Keay
Introduction
One and a half million older Americans now live in nursing homes. Although nursing facilities have seen increased medical acuity and decreased lengths of stay among their residents in recent years due to relentless health care cost containment and long-term care reform, for many older residents the nursing home is their home-their final home. Currently, more than one fifth of all deaths in the United States take place in nursing facilities.
Because of this concentration of terminally ill residents, issues of dying, grief, and loss take on tremendous importance in nursing facilities. However, due to heavy government regulation and a mandated focus on rehabilitation, financial pressures, staffing demands, and the lack of specialized training in end-of-life care, nursing facilities often are not the ideal environment for responding to the loss-related issues experienced by residents, their families, their neighbors in the facility, and even staff.
In fact, the laws and regulations governing nursing home care and current financial pressures on facilities can be significant impediments to achieving peaceful life closure. In the current environment, staffing levels are low and the fiscal incentives for providing appropriate end-of-life care are minimal. On top of that, many nursing home staff and physicians have limited education and experience in modern methods of caring for dying patients, also known as palliative care. Palliative care is the careful, attentive, and appropriate management of the full range of care needs experienced by terminally ill residents, delivered in a timely manner using specialized medical expertise.
Good end-of-life care can be provided in the long-term care setting. But it will happen only if rational care planning processes are brought to bear in order to ensure an ethically safe, comfortable, self-determined, and fitting final phase of life. It also requires overcoming widespread antipathy to nursing homes. In a recent survey, 30% of seriously ill hospitalized patients said that they would "rather die" than be placed in a nursing home. Such attitudes, reflecting the public's concerns over the quality of nursing home care, need to be taken seriously.
No doubt the dilemmas of end-of-life care in the nursing facility leave many family survivors feeling guilty that their loved ones did not receive better care as they were dying. Families of facility residents who died while receiving less-than-optimal care often feel that they must complain to their legislators, regulators, and anyone else who will listen, trying to achieve some measure of justice as a way of making their loved one's death mean something.
One obvious solution to those dilemmas is hospice-an intensive form of palliative care focused on the relief of suffering, life-transition issues, and bereavement follow-up for survivors. Hospice care today has a small but growing role in nursing facilities as specialized hospice teams come into the facilities to coordinate, supplement, and enhance the end-of-life care given to eligible, hospice-enrolled residents. Despite these advances, regulatory demands on nursing facilities and legal requirements shaping their contracts with hospices challenge both partners to develop an effective working relationship in order to expand access to appropriate hospice and end-of-life care.
The Long-Term Care Continuum
In our society, with its large and growing population of older persons, how to provide humane yet cost-effective long-term care looms as an ever-greater challenge. Yet there are also myths about nursing homes that don't necessarily reflect current realities. Dramatic shifts have occurred in health care over the past 30 years, especially in the sites where it is delivered. Patients who used to be cared for in nursing homes now live primarily in assisted living facilities or else receive home care. Patients who used to be in hospitals are now in nursing homes. Patients who used to be in intensive care units are now maintained on regular hospital wards. And patients whose illnesses used to be fatal are now in the intensive care unit. Medical care has become much more adept at prolonging life while dealing with constant fiscal pressures to deliver the care in the environment that is least expensive to health care payers.
According to the American Health Care Association (AHCA), a trade group representing nursing facilities, "Long-term care now includes a broad spectrum of care, from subacute medical care, ongoing skilled nursing care, care for the developmentally disabled and special populations as well as adult day care, residential care, assisted living, and home and community-based care. Facilities providing this range of services are increasingly diversified and include nursing facilities, subacute care centers, rehabilitation centers, intermediate care facilities, residential care facilities, and assisted living facilities" (AHCA, 2001; Executive Summary, p. vii).
Currently there are more than 17,000 certified nursing facilities in the United States with approximately 1.8 million beds. Another 800,000 seniors reside in assisted living facilities and 600,000 live in continuing care retirement centers.
In the past, nursing homes focused on providing long-term custodial services to older people, including basic medical and residential services, AHCA notes. The current trend, however, is for nursing facilities to seek Medicare or Medicaid certification in order to provide services to a patient population with a significantly higher medical acuity with an increased emphasis on rehabilitation therapies. Subacute care is a newer piece of the long-term care continuum, merging some of the sophisticated technology of the hospital with the skilled operations of the nursing facility and providing high-tech, hospital-like care to seriously ill patients at a lower cost.
Assisted living facilities, by contrast, offer supervision, assistance, protective oversight, meals, and limited health care services to relatively independent seniors in a homelike atmosphere. Assisted living facilities vary widely from state to state in terms of their licensing requirements and even what they are called. Such care is also known as residential care, board-and-care, congregate care, or personal care. While the nursing home industry is highly regulated, assisted living facilities have not received comparable standards or regulatory oversight.
Trends in the Regulation of Long-Term Care
The two major priorities for health care payers are cost and quality. Understandably, payers want to get the most value for their money, especially as the baby boom generation ages. The United States already pays more than 14% of its gross domestic product on health care-more than any other developed country-and could wind up spending much more if escalating health care costs are not moderated. One way to control costs is through the regulatory structure that governs reimbursement under the Medicare and Medicaid programs.
In recent years the government has tried to aggressively legislate the quality of care in nursing facilities by developing detailed rules about care processes and outcomes, all tied to regulatory scrutiny and enforcement efforts. The regulations do not favor comfort measures; they reinforce rehabilitation or aggressive medical interventions in response to all identified declines in function.
A major federal legislative initiative, the Nursing Home Reform Act (1987), was passed in an effort to prevent the warehousing of older residents. The act requires that all residents receive care designed to "maintain or improve function." Detailed assessment, reassessment, care plans, and processes are now required of all nursing homes, with regular transmission of the data by electronic means to the government. Facilities that do not comply are subject to withholding of payment, fines, bans on admissions, closure, and even threats of criminal prosecution. The consensus has been that while this law has improved overall care for many nursing home residents, it has also led to new problems.
Since the passage of the Nursing Home Reform Act, nursing homes have become larger, more often corporately owned, more aggressive in rehabilitation efforts, and much more aware of their own costs. Issues not addressed clearly and specifically in the act, however, including terminal care and pain control, have not received the same attention. In one well-known study of nursing home patients with cancer, it was found that 29% of them had daily pain, while 26% of those with daily cancer pain had no analgesics ordered-not even aspirin (Bernabei, Gambassi, Lapane, et al., 1998).
The recent introduction of an HMO-style, capitated reimbursement mechanism called Resource Utilization Groups to the nursing home industry has accelerated the pace of change in nursing facilities by dramatically cutting their reimbursement at an even faster rate than what was envisioned by cost-cutting legislators. The six largest nursing home chains, as well as many smaller companies and nursing homes, are now in bankruptcy. Many facilities are struggling to find adequate nursing staff in the face of an acute nursing shortage just to meet the legal minimum staffing requirements, much less the optimal staffing required to address all of the specialized needs of residents, including those at the end of life. In Maryland, for example, the minimum staffing requirement is 2.0 hours per resident per day (which includes all charting as well as patient care), despite a consensus by experts that doing all of the required tasks demands at least 3.5 hours of staffing per resident per day (Harrington, Kovner, Mezey, et al., 2000).
If the nursing home has additional funding beyond the usual government reimbursement, it may be able to provide some extra services. One way of gaining additional funding is to ask residents to pay privately for the costs of adequate and appropriate end-of-life care. For residents of assisted living facilities, that is often what is attempted. Older individuals pay a considerable sum-in many cases their entire life savings-to enter an assisted living facility that promises to care for them for the rest of their lives. What actually transpires routinely in those facilities is not yet clear.
Some nursing homes get additional funds, beyond the $30,000 per year in reimbursement that is the industry's average, by charging private-pay residents $60,000 or more per year for their care. Other nursing homes receive support from religious or charitable organizations. But simply paying more for nursing home care does not ensure that the special needs of dying residents will be addressed. Too often, those who are dying in long-term care get the "standard of care" only in the minimal sense of "this is what happens to most people."
Perverse fiscal incentives may also delay the application of appropriate and needed palliative therapies to dying patients. To counter that danger, the quality of end-of-life care should be factored into any discussion of the costs of long-term care, or else the value of the care is without meaning. For too many terminally ill nursing home residents, the evidence shows that they are dying in pain, with uncomfortable symptoms and marginal hygiene and without their families' bereavement issues being addressed-or they are sent off to a hospital for aggressive, unwanted, and usually futile attempts at prolonging their lives.
The Hospice Solution
In the context of such financial, regulatory, and human-resource challenges to optimal end-of-life care in the long-term care setting, hospice emerges as a more appealing solution for some dying residents of both nursing homes and assisted living facilities. Hospice is a specialized philosophy of care for the terminally ill and their families emphasizing comfort and symptom management; life-closure issues; attention to psychosocial, spiritual, and bereavement needs; and treatment of the patient and family together as the unit of care. Hospice is a medically directed, multidisciplinary approach that provides or coordinates all of the services needed to manage the care of terminally ill patients, regardless of the setting for their care. The hallmarks of hospice care, as articulated by the National Hospice and Palliative Care Organization (NHPCO), include achieving self-determined life closure, a safe and comfortable dying process, and effective grieving by family survivors.
Hospice care was introduced to the United States from England in the 1970s, and then codified as a Medicare benefit by an act of Congress in 1982. Subsequently, the federal government clarified that terminally ill residents of nursing facilities were just as entitled to hospice as those residing in their own homes. The actual funding mechanism for such care is complicated and requires a contractually defined relationship between the nursing facility and the Medicare-certified hospice program, addressing such issues as development and oversight of the hospice plan of care, coordination between staff of the hospice and facility, payment, and specified services.
When the nursing facility and the hospice program are able to work together, they can collaborate in ensuring the provision of appropriate end-of-life services to the facility's terminally ill residents. Such collaboration offers residents access to hospice's specialized expertise in the needs of the dying, additional nursing and other professional care that otherwise would not be available, the support of volunteers and spiritual care professionals, and attention to issues of loss and grief. Bereavement services, which are required from all Medicare-certified hospice programs, include professional assessment, counseling, and other support. Such services simply are not part of the mandate for nursing home care, nor are they covered by standard reimbursement for either nursing homes or assisted living facilities except under contract with hospices.
Hospice services are regulated and monitored to ensure that the hospice program provides all of the services that it promises. That assurance can provide a level of comfort to residents of long-term care facilities when they are diagnosed as terminally ill. Residents who receive hospice care experience less pain, have their hygiene needs attended to, and are assured that their loved ones will be comforted after their deaths.
Unfortunately, the same voluminous regulations designed to ensure quality of care when hospice services are delivered in patients' homes may tend to discourage access to those same services in nursing facilities. In 1997, only 1% of nursing home residents who died actually received hospice services, while 70% of nursing homes did not have a single person who died while receiving hospice services. Thus, there is a considerable gap between what is theoretically possible by adding hospice services to long-term care and the actual realities of dying in that setting.
Hospices operate under federal Title 18 regulations, whereas nursing homes operate under Title 19 rules, so a carefully structured contract is required that allows each entity to meet its own regulatory requirements without jeopardizing the other's compliance. Model contracts have been developed by the national trade associations but are not widely in place, primarily due to lack of interaction between the cultures of the two provider models and to the nursing homes' fundamental mandate to "maintain or improve function."
Beyond the issue of access is the matter of what services are provided. NHPCO impaneled a Nursing Home Task Force (NHPCO, 1998), whose final report identified a number of tasks that need to be performed in order to provide adequate care to dying nursing home residents-whether they are receiving hospice services or not. A plan of care should be developed that is personalized for the resident and addresses pain control, dyspnea, activities, incontinence, skin breakdown, mental status changes (including mood, delirium, seizures, agitation, and coma), nutrition and fluid maintenance, life-sustaining medical interventions (CPR, antibiotic use, other medications), anticipatory grief, and other pertinent issues. The nursing home is required to develop such a plan of care and to keep it up-to-date, but ensuring that the plan actually addresses the needs of the dying person in a timely manner with the latest methods of palliative care may require persistent advocacy by residents or their families, as well as by professional staff of both the nursing facility and hospice.
What Can Residents and Their Families Do?
The need for advocacy is even greater when there is no hospice program involved, either because of the lack of a contract or because the resident doesn't meet eligibility criteria for the Medicare Hospice Benefit. Caring for a terminally ill resident requires a tremendous amount of work and significant expertise. It is often the task of the resident or family to advocate and monitor care in order to ensure that the dying person gets the services he or she needs.
On a practical basis, the resident and his or her family, when faced with the challenge of end-of-life care in the long-term care setting, need to be aggressive in insisting that hospice services are engaged or that the facility provides equivalent care. Many assisted living facilities are happy to get hospice services involved, since hospice provides high-quality care that is charged directly to Medicare. Nursing homes, however, vary widely in their willingness to consider relationships with hospices. Residents and their families may have a role in urging the facility to establish a contractual relationship with a hospice program that could allow the resident to enjoy the support of hospice care.
It is no longer automatic for a nursing home resident to be transferred to a hospital when death nears. For both patients and their families, a death that comes shortly after an ambulance transfer to the intensive care unit or another acute hospital ward introduces an unfortunate and unnecessary instability and emotional turmoil at a time when calm and familiar surroundings are especially important. By contrast, the presence of other residents who may have gotten to know the patient over time, the lack of pressure to move the patient yet again to a different setting when the allotted hospital stay is finished, and the more homelike surroundings of the long-term care setting that still retain adequate medical supervision and professional support are all reasons why remaining in the nursing facility might be desirable at the very end of life.
Nursing homes have been caring for dying people for many years, and assisted living facilities have an additional opportunity to deal with end-of-life care without some of the regulatory burdens that nursing homes bear. If combined with the expertise and supplemental services of hospice care, the long-term care setting may be the very best place to die for many older patients. Having a vision of what needs to be done and how it can be accomplished can guide the resident, his or her family, and professional caregivers towards appropriate life-closure tasks. That is of paramount importance in learning to live with grief and in taking advantage of opportunities for personal growth at the end of life.
Nursing home staff and residents are well acquainted with death; on average, one out of every three people admitted to a nursing home dies within the first year after admission. Thus, there is a tremendous amount of grief already present in most nursing homes, as well as in assisted living facilities. Perhaps one of the greatest benefits that hospices can provide is to address the grief of the facility's staff and the surviving residents, who become in effect the patient's extended family. That broadly disseminated grief support could provide a real service to the professional care providers, friends, and acquaintances of those who die, bringing a new dimension of meaning.
It is fitting that the lives of those who die be appropriately remembered and honored and from their death a new sense of purpose can emerge. That renewed sense of purpose will benefit everyone involved in long-term care, as well as society at large.
Dr. Timothy J. Keay has taught geriatrics, ethics, and family medicine at the University of Maryland School of Medicine since 1988. He has a medical degree from the Medical College of Wisconsin, a Master's degree in theological ethics from Pacific Lutheran Theological Seminary, and fellowship training at the University of California, San Francisco. He is the first Faculty Scholar of the Project on Death in America, Open Society Institute, with a project on improving end-of-life care in nursing homes. He is currently the medical quality consultant to Baltimore's Medicare waiver program, a teacher on hospice and palliative care at the University of Maryland School of Medicine, and medical director of a large Baltimore nursing facility.
This article originally appeared in Living With Grief: Loss in Later Life, Kenneth J. Doka, Ed., Hospice Foundation of America, 2002. For more information on the Living With Grief series, click here.
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Nursing Home Reform Act of 1987, 42 C.F.R., Part 483.
