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Hospice and Alzheimer Disease: A Study in Access and Simple Justice

By Bruce Jennings

Hospice care for terminally ill patients with cancer has grown markedly during the past two decades and has become a significant part of the American health care system. Since its origins in the early 1970s, hospice has been relatively slow in broadening its mission and expertise beyond cancer, but today about 40 percent of hospice patients die of something other than cancer; a significant and growing number are in the end stages of congestive heart failure, chronic obstructive pulmonary disease, AIDs, amyotrophic lateral sclerosis, or some other chronic debilitating illness.

Among those conditions for which hospice care would be a blessing for many patients and families, however, Alzheimer disease (AD) stands out as a vast domain of unmet palliative care need. It is true that hospice care is largely home based, but it can also be provided in nursing homes and other long-term care facilities, and that is where the vast majority of AD patients reside during the end stage of their disease. Hospice care is an approach that forgoes life-extending treatment, which is often futile and inhumane in cases of end-stage AD. Hospice is a holistic, family-centered approach to care, which is exactly what is called for when the dying patient has already lost much of himself or herself (memory, cognitive ability, communication, a sense of self) and families have typically already undergone a lengthy ordeal of grief and loss. Seemingly tailor-made for AD, why then is hospice care so rare for those dying with dementia?

For the fact is that hospice is not widely recognized and not very often used by Alzheimer families. AD was listed on the death certificates of only 23,000 of the 2.5 million people who died last year. But in fact many more than that, maybe as many as 100,000 actually died with Alzheimer's. No one knows for sure how many AD patients are enrolled in hospice programs each year, but a good estimate is that about 7 percent of the nation's hospice patients are individuals with dementia. (It is not known how many of those have a primary diagnosis of AD and how many are patients whose dementia is secondary to some other terminal condition such as cancer.) The sad fact is that otherwise medically robust and "healthy" AD patients fall between the cracks of our health care system near the end of their lives.

Truth to tell, this happens to AD patients and families throughout the course of the disease. In early stages, assistance at home is nearly impossible to afford, no provision for respite care to give family caregivers a break is available in insurance policies, and rehabilitation services are denied. Until 2002 Medicare simply refused to pay for such services if a patient had an AD diagnosis. Later, the kinds of supports that would allow patients to remain at home are lacking or unaffordable. AD patients are placed in nursing homes not because they need or want to be there, and not because their families want them there, but because it is the only place they can afford to go to get a modicum of safety, nursing care, and dignity. Finally, as they are dying, uninterested in eating and unable to swallow, largely unresponsive to their surroundings and barely conscious, AD patients are once more the hot potato that no one in the health care system really wants to touch. Nursing homes do what they can, but they are not always attuned to the palliative care needs of the dying, and they have virtually nothing to offer families who are deeply in need of healing.

Is this really a problem? Perhaps the lack of AD patients going into hospice programs reflects the informed choices and decisions of Alzheimer's families. I don't believe that. This state of affairs reflects a lack of information more than an informed choice. And it reflects financial, systemic, and attitudinal barriers precisely of the kind detailed in "Access to Hospice Care: Expanding Boundaries, Overcoming Barriers."

What are the reasons for the low rate of hospice care for dementia patients? What ethical and value issues does an Alzheimer family face when considering hospice, if they hear about it at all? What special challenges do Alzheimer patients and families pose to hospice programs and care givers? How can hospices be better enabled to provide care for Alzheimer patients and families?

These are the questions that must be explored in a more concerted dialogue between the hospice community and the Alzheimer's community in the future. Hospice programs are finally ready to rise to meet the challenge of Alzheimer care; and Alzheimer families are ready to learn about and to embrace the hospice approach to end of life care. If the policymakers, physicians, and other "experts" cannot facilitate this rapprochement, then they should get out of the way and at least stop creating barriers to it.

What barriers? In the first place, of course, there is the Medicare Hospice Benefit and its six-month life expectancy rule. Utilization review and fraud and abuse investigators have tended to single out Alzheimer patients (who tend to have the longest lengths of stay) in the charts they review, and hospices are gun shy when it comes to admitting or retaining AD patients who might "live too long." This is discrimination against patients with dementia, pure and simple, and it has got to stop. Investigators should be directed by their superiors to use a different approach, and hospice programs should stand up and fight the discrimination through administrative appeals and in court, as many have successfully. The fact is that AD does not lend itself very well to prognostication. [1]

One of the best things that could happen to AD patients and their families (short of the new medicines now on the horizon that may prevent or treat AD) would be for hospice physicians and those experienced with AD to come up with reasonable guidelines for the admission and recertification of AD patients and for policy makers to accept them. The current Local Medical Review Policy on Alzheimer Disease is overly restrictive and does not reflect a state-of-the-art understanding of late-stage AD.

Moreover, there is inadequate physician awareness and referral of AD patients to hospice in the community. This is such a familiar story. What more can be said about it? Actually, there is something important to be said about the attitude of doctors that parallels that of AD families.

Some Alzheimer families may have ethical or theological concerns about forgoing life-prolonging treatment and opting for palliative and comport measures only. These concerns can and should be allayed. If there is one thing that the law, ethics, and the theology of virtually all faiths agree on, it is that hospice care for end-stage Alzheimer's patients is ethically appropriate in almost all cases. Having an advance directive is best, but even without one it is both ethically and legally acceptable (states' rules vary) for family members to make decisions to forgo life-sustaining treatment (including CPR, artificial nutrition and hydration, and antibiotic therapy) and to opt for comfort measures only when these decisions are in the best interest of the patient and in accord with his or her prior wishes and values.

Still, families (and physicians reluctant to refer) may have emotional reasons rather than principled ethical or religious reasons for feeling wary of hospice. Those feelings should not be dismissed or ignored; but they do need to be counteracted. Because hospice has been understood as a "last resort," and as a place where people go to die, enrolling a loved one in hospice - particularly if it is someone whom you have cared for with great difficulty, anguish, and self-sacrifice for a very long time - may feel like a betrayal, both of the loved one and of yourself. Many families have already faced similar feelings at the time of nursing home placement and may see hospice as going through all that yet again. The remedy is really information about hospice, what it stands for and what it provides. The remedy is time to get to know the people of hospice, what it has done for other patients and families. Good hospice care is so far from being abandonment and betrayal that these feelings among many Alzheimer families - authentic and genuine as they undoubtedly are - are an exquisite irony.

Looking at the problem from the other side of the bed, so to speak, many hospice programs frankly have been reluctant to take on AD patients due to their concerns about the special care needs of these patients and families. Hospice programs and professionals sometimes harbor misconceptions and stereotypes about dementia that make them hesitant to reach out to Alzheimer patients. Better information and experience can overcome these misconceptions. Moreover, there are significant differences between the needs and expectations of Alzheimer families and families that have been coping with various forms of cancer. AD families may not take kindly to the tendency of hospice professionals and volunteers to come into the home, with a burst of energy and perk, and the take charge of someone the family (usually one or two family members, mainly women relatives) has cared for, with precious little outside help, for years. Hospices need to appreciate these differences and respect them, just as Alzheimer families will have to understand and accommodate themselves to the hospice approach to care.

I have heard it said that AD patients are inappropriate for hospice because they cannot benefit from the kinds of care hospice has to offer. Hospice is all about meaningful life closure, and the patient who cannot remember, cannot speak or otherwise communicate, who does not recognize family, friends, or caregivers and cannot therefore come to closure with any of them, is a patient for whom hospice has little or nothing to offer.

Whatever force these observations may have, they miss the forest. Let's be clear: AD patients need the services hospices provide. They need it just as much, albeit perhaps in different ways, than cognitively intact patients do. [2]

They have pain that often goes untreated because unnoticed and improperly assessed. Communication becomes different as cognitive and speech pathologies proliferate, but it does not disappear until very late, almost at the very end. AD patients need human concern, presence, touch, and witness no less than other dying persons. [3]

Families too need the services hospices can provide - resistant though they may be, and different though their grieving may be. It is one thing to learn that someone you love will be gone in about three months, as I did when my mother was diagnosed with advanced cancer of the esophagus. It is another to see someone you love fade and disappear over several years, and then face loss anew when a final decision about a feeding tube, or antibiotic treatments for pneumonia has to be made, as I discovered with my father's long dying with Alzheimer's. Hospice was present and very helpful in my mother's final illness. There was hardly a question about it (esophageal cancer is aggressive and no treatment really works), and she died well, by her lights and by mine. With my father, a few years before, however, we never heard the term. Not from doctors, nursing home people, or the local Alzheimer's support groups.

Too bad. Shortly before his death, my father had a broken hip for several months that no one in the nursing home noticed. By that time, he was no longer speaking. Maybe the better-trained eye of a hospice nurse would have seen telltale signs of what the doctor said must have been constant pain. And at the time of his death, from pneumonia treated palliatively, my family could have used some support of our own. I am an only child, and my mother and I really had no one to talk to about his death but each other. And we really did not talk about that. For me, his death was a relief. She had given him so much care in the preceding decade it should have been an even bigger relief to her. Still, I'm not sure. Without him to care for ... well. Alzheimer families have a great deal to talk about - a great deal of healing to do - and hospice might help.

The barriers to expanded hospice access for AD patients and families are real, and overcoming them should not be taken lightly. But when looked at from a certain point of view, they are just so unnecessary. I suggest we look at this not as accountants with sharp pencils or administrators with rough seas of regulation to navigate. For once, let's look at access to hospice with eyes of simple justice fixed on the reality of human suffering. People who know about Alzheimer's and people who know about hospice really must get their heads together and fix this soon.

Bruce Jennings

Bruce Jennings is senior research scholar at The Hastings Center and teaches at the Yale School of Public Health.

This essay appears in the report Access to Hospice Care: Expanding Boundaries, Overcoming Barriers.


[1] N.A. Christakis, Death Foretold: Prophecy and Prognosis in Medical Care (Chicago: University of Chicago Press, 1999).

[2] L. Volicer and A. Hurley, Eds. Hospice Care for Patients with Advanced Progressive Dementia (New York: Springer, 1998)

[3] T. Kitwood, Dementia Reconsidered (Buckingham, United Kingdom: Open University Press, 1997), and J. Killick and K. Allan, Communication and the Care of People with Dementia (Buckingham, United Kingdom: Open University Press, 2001).

Cite as:
Bruce Jennings, "Hospice and Alzheimer Disease: A Study in Access and Simple Justice," Hastings Center Report Special Supplement 33, no. 2 (2003), pp. S24-S26.