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a RAND Center to Improve Care of the Dying, Arlington, VA
Correspondence: Joanne Lynn, MD, MA, MS, The Washington Home Center for Palliative Care Studies, 4200 Wisconsin Avenue, NW, 4th Floor, Washington, DC 20016. E-mail: jlynn{at}rand.org.
A few years ago, I was asked to write a commentary on care at the end of life in the Journal of the American Medical Association's Clinical Crossroads series (Lynn 1997
). I asked the editors to pick a case that was "quite typical," that is, older than 80, with multiple problems and illnesses, and an uncertain timing of death. This sort of case is not among those most discussed; virtually all of the court cases, movies, and television shows that have anything to do with end-of-life care have focused on patients who are younger than 70 years, have a single fatal condition, have a loving family and good insurance, and otherwise are profoundly atypical.
The series editors needed only a day to find the case—an 88-year-old lady with severe heart failure living in an assisted living facility (ALF). On a usual day, she could get to the dining room (slowly), visit with residents and staff, and enjoy visits from family. Occasionally, she would "tip into failure" and get quite short of breath. Otherwise, she had the typical panoply of geriatric conditions. This is really garden-variety dying, or, more to the point, garden-variety living at the end of life.
What was the calamity in her care? It was not really that Medicare did not cover her prescription drugs, because Medicaid did. It was not that she needed any additional legal rights—she had a family member proxy, and her views were reasonably well-known and honored. The calamity that faced her was simply that there was no place that was appropriate for her to live. She did not want or need a nursing home. She liked living in the ALF, but the administration preferred that she move elsewhere rather than die in place, unless she could be enrolled in hospice. Of course, she could not enroll in hospice because her prognosis was too uncertain. No home care agency offered 24-hr on-call, with nurses able to come to the facility. Therefore, she had to accept the routine of being sent to the hospital with each exacerbation. However, hospitalization clearly had drawbacks in that she lost comfort, risked falls and injury, and risked getting procedures done that did not serve her well. Quite simply, there was no appropriate venue for an elderly lady to live out her life with heart failure.
The challenge of where one will live while dying is at the heart of the issues that Mezey and colleagues 2002 take up in their article. What would be ideal? Indeed, what would even be acceptable? What role does financing play, and what roles do the social expectations of all concerned play?
Although Mezey and colleagues 2002 cite many publications relevant to the topic, none of the existing literature really answers the question of which venue generally offers the best balance of service to the patient and family and reasonable efficiency for the community. While there is an emotionally strong draw for preferring the home setting, we must remember that home is also the locus of abuse, dysfunction, and isolation for many elderly persons (Cohn, Salmon and Stobo 2002). Even when "home" is a loving and caring environment, it may have no actual caregiver for this patient's needs, or the family may be bankrupted financially or emotionally by the demands of care.
Likewise, although the authors voice disdain for nursing homes, those settings do reliably offer shared caregiving, availability of medications and specialists, and reasonable efficiency. Sometimes, they even offer a feeling of community, kindness, and confidence (American Hospital Association 2002).
We have, at best, only fragmentary knowledge of the rate of transitions between settings and the effects of various arrangements on the well-being of families and patients. Our social arrangements are often vestiges of older patterns, and our measures of quality simply do not attend to this fundamental characteristic of good care for the last phase of life. We do not even have a widely shared, reasonably well-articulated mental model of where a good end of life would be lived. Such a model is shaped by the diseases that people now die from and by the age-related challenges to health, function, and social setting that dying people also experience. In addition, the community's constraints on personnel and funds shape the real possibilities. Obviously, not everyone can have a "home" with volunteer family caregivers who are skilled and caring. Not everyone can be comfortable and functional until very near the end of life.
Indeed, the enthusiasm for living as if healthy up to close to the time of death is quite unrealistic. More than 80% of Americans die while covered by Medicare, and almost 90% of them have stroke, dementia, cancer, heart disease, or obstructive lung disease (Hogan et al. 2002). It is unreasonable to think that the problem of dependency is going to be solved by abbreviating the duration of disability much in these settings. Because the diseases entail substantial disability in their final phases, one can hardly aim to reduce the burden of disability substantially by abbreviating the patients' lives, once the person is disabled (Lynn 2000).
We need research that will illuminate what can be done, at what cost. We seem to need a concept of the "ceiling" on good deeds—what is the maximum achievable good outcome? It will not be that 100% of people die in their own beds, well cared for, in a private home. Achieving maximum good outcomes will entail building capacity for medical and nursing care in all of the settings where people live, so that they can stay at home when very sick. Of course, those services are neither free nor foolproof. It always counts as an actual or potential negative experience for people to have to be moved around when they are very sick and nearing death. However, moving may be better than leaving the person where he or she has been living.
What matters, it seems, is to have thought through the issues and to have a societal arrangement that has a workable approach for my 88-year-old lady with heart failure and the many like her. In her case, creating a 24-hr-a-day, on-call home care/hospice service with skilled nurses able to go to the home, and to provide support for the ALF staff and her neighbors, would make it possible for her to live out the rest of life on-site. But someone has to be in a position to see the shortcoming that she faces and solve it. We do not have anyone who is in the position of overseeing arrangements like these. There is no coordinating body to which one can usefully direct the statement that the lack of 24-7 home care on "standby" is a serious shortcoming.
A few comments directly on the Mezey and colleagues article might also be in order. First, the merits and shortcomings of nursing homes may turn in part on whether one is addressing sections of nursing homes that focus on restorative services and are paid by Medicare (subacute or skilled) or those that serve more stable or declining patients and are paid by private resources or Medicaid (most nursing home beds). Both kinds of services have merits and shortcomings, but the usual nursing home setting is one that is dominated by poverty funding, and that fact is apparent in everything from the aides' wages to the state Medicaid budget process.
Virtually all types of living arrangements evidence substantial variations, so generalizations in the negative about prisons and nursing homes, or about the desirability of home, are all problematic. Essentially none are anchored in population-based data, being based on anecdotes and narrow reports from a few facilities or a small region. Mezey and coworkers seem to be on the verge of making an argument for a hierarchy of reasons for settings and transfers, one that would prioritize patient preferences and put provider organization efficiency at the bottom of the list. Because they never actually make the argument for these priorities, I am not clear about what elements would be allowed on such a list and why it would be ordered as they suggest. With predictions of up to 12 million persons with dementia and a similar-sized group with other fatal chronic illnesses—all within 20 years—it seems plausible that society might honor patient preferences when possible, but also maintain a strong priority for efficiency.
Anyone who aims to improve care for the last phase of life urgently needs a robust "epidemiology of serious chronic disease" to know where needs are being met and where they are not. With that information, we could identify who suffers needlessly and learn what it would take to have each setting of care capable of serving people well. Almost no one near dying really has to be in a hospital, except that society has not made alternatives available that actually provide quick and competent custodial, symptom management, and information services. Some of the alternatives will be limited by rather immovable constraints, like the lack of paid or unpaid caregivers in some home settings.
The desirability and disadvantages of transitions and settings might relate in part to various characteristics of patients, families, and communities. It might, for example, be relatively easy to understand a transition to hospice in the course of classic lung cancer, in which the onset of serious needs for symptom relief and services to support disability is reasonably congruent with the inevitability of death within a few weeks. It might also be appropriate to expect a transition to institutional long-term care in the life of most patients with progressive dementia in old age, given certain characteristics of their family and finances. On the other hand, it seems cruel and wasteful to set up systems that expect that people with substantial dementia will be moved from their living setting (at home, ALF, or nursing home) to a hospital for virtually every serious disruption in health. Surely it is better for all concerned to evaluate and treat on-site such conditions as pneumonia, urinary tract infection, arthritis, and other expectable complications.
To mobilize services to the home will mean changing funding and regulations. Those reforms will be best if informed by data throughout the process of change. Rather than pursuing an ideology, even one that scorns nursing homes or celebrates hospice as we mostly now do, we would do well to settle on measures of success and to constrain our reforms to those that serve to accomplish our aims. We face more than doubling the number of persons coming to the end of life at the same time. We have a precious few years right now to get more reliable services in place. Adhering to time-worn ideologies will not be efficient in developing a reliable care system. Instead, we need an era of innovation, evaluation, and health services research, aiming to learn how to ensure that the end of life can be meaningful and comfortable, and efficient enough for the community to sustain.
Without having strong evidence, I believe that people who are sick enough to die should only rarely be in hospitals, although they may often live in institutions like nursing homes. Emergency transitions between other settings and hospitals should almost always be seen as a serious threat to patient safety. Planned transitions among settings need to be carried out with grace, redundancy of information and accountability, and patient/family involvement. Very good care would include institutional long-term care, and that type of care would be seen as desirable and supportive. However, my beliefs are mostly shaped by my own clinical experience and anecdotes. Leaders, planners, and involved citizens really need to have the data that evaluate patients' (and families') experiences with various alternatives. Perhaps then we can forge a consensus about what defines good end-of-life care and make reform happen.
The Forum
Book Reviews
Practice Concepts
Received for publication October 3, 2001. Accepted for publication May 23, 2002.
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This article has been cited by other articles:
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  G Visser, M Klinkenberg, M I B. van Groenou, D L Willems, C P M Knipscheer, and D J H Deeg The end of life: informal care for dying older people and its relationship to place of death Palliative Medicine, July 1, 2004; 18(5): 468 - 477. [Abstract] [PDF]
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