March 29, 2007
The report presents a striking graph showing that the average amount spent by Medicare on people with dementia (both Alzheimer’s disease and other types) was almost three times what Medicare spent on other patients: $13,207/year compared to $4,454/year. A small fraction of the total is spent on home health aides, but an enormous proportion is spent on hospital care and on nursing home care: the cost of hospital care for the patient with dementia is 3.2 times higher for a patient with dementia than for other Medicare patients ($7,074/person compared to $2,204/person) and the cost of skilled nursing home care is more than ten times higher for a patient with dementia ($2,144/person compared to $210/person), where skilled nursing home care translates into care in a subacute or rehab unit after hospitalization. Medicare pays only for this kind of “skilled nursing facility,” not for custodial long-term care.
By contrast, only a very small percentage of people who die of advanced dementia receive hospice care. One recent study found that a mere 5.7% of nursing home residents and 10.7% of people with dementia living at home were referred to hospice even when they were dying of their dementia (SL Mitchell, JN Morris, PS Park and BE Fries, “Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings,” Journal of Palliative Medicine (2004); 7:808-16.
Taken together, these observations about the medical care we give people with dementia paint a disturbing picture. Instead of proving comfort care to people who are at the end of their lives, who no longer can get dressed or go to the bathroom by themselves, and who can no longer carry on a conversation, we are sending them to the hospital and subjecting them to invasive and costly tests and treatments that they cannot understand. If they survive the hospitalization, we send them to a rehabilitation facility because they are often too debilitated after their acute hospital stay to return to the same nursing home or home environment from which they came.
Most older people, when asked, say that if they developed Alzheimer’s disease they would not want invasive and painful medical care intended to prolong their lives, treatment that would simply allow them to develop even more advanced dementia. But once they lose the ability to make decisions for themselves, we routinely subject them to precisely the kind of medical treatment that most of them would not want.
We can do something about this travesty today. We can talk to healthy older people about their preferences for care and document their wishes in an advance directive. It’s not unreasonable to ask patients, well before they show any signs of cognitive impairment, to think about the general approach to medical care they would favor if they turn out to be among the 42% of people over 85 who will develop dementia. We can also establish standards for what constitutes appropriate care for people with dementia, standards that would determine just what physicians recommend to patients and families. Searching for a cure is a noble undertaking and we should pursue it wholeheartedly, but as long as millions of Americans continue to contract Alzheimer’s disease, we have a responsibility to provide humane and appropriate medical care for all who suffer from this tragic condition.
March 06, 2007
Ruth Dempsey: In The Denial of Aging, you argue: "Despite my vitamin and exercise regimens, I am likely one day to find myself sick or frail. Better I come to terms with this reality now." Why is this message important?
Muriel Gillick: I worry that if we deny the realities of old age we will squander our resources on ineffective but costly screening tests. We will waste our resources on ultimately futile but expensive treatment near the end of life, leaving us insufficient funds for a beneficial cure.
I am concerned that if we assume Alzheimer's disease will be cured and disability abolished in the near future, we will have no incentive to develop long term care facilities that focus on enabling residents to lead satisfying lives despite their disabilities.
And I'm afraid that if we assume diet and exercise will prevent chronic disease, we will fail to look for better models of care for chronic disease. We will not bother to overhaul our medical system so that it provides incentives to physicians and hospitals to improve the care of chronic illness.
RD: You emphasize evidence-based medicine. What is it, and how is it likely to affect me?
MG: Evidenced-based medicine is an approach to medical care that rests on scientific studies. Instead of simply assuming that tests or treatments will produce the desired result, we don't prescribe those interventions unless we have sound evidence that they work.
If your physician adheres to these precepts, he or she will not prescribe something for you without good data indicating that it makes sense. This means that you will not get treatments you may read about in the popular press that sound like a good idea but have not been tested. It means you will not be subjected to treatments that are useless but have worrisome side effects. It also means that what seems desirable treatment one year may turn out not to be advisable the following year when there is new data.
RD: You recommend a brand of intermediate care for frail older people. Can you give me an example? Why is this type of care important?
MG: Many people - including physicians - tend to think that there are only two approaches to medical care: maximally aggressive treatment (whatever devices, drugs, or operations are relevant for your condition) or hospice type care, care that is focused exclusively on comfort. In fact, there are often options in between these two extremes.
A frail older person with a heart attack might be perfectly willing to have a cardiac stent placed to keep his narrowed coronary artery open (a procedure done while you are awake and requiring typically a day or two in the hospital), but not willing to undergo open heart surgery, a riskier procedure with a longer recovery period.
It's important to consider such options so as to avoid over-treatment, which often results in side effects and complications that you might strenuously wish to avoid, and also to avoid under-treatment - being deprived of potentially life-prolonging or quality of life enhancing therapy.
RD: Making end-of-life decisions can be complicated for both patient and family. Can you give me some guidelines?
MG: It's critical to have open conversations with your family members and your physician about your overall goals. You may not know whether or in what circumstances you might want to have cardiopulmonary resuscitation or be on a ventilator. But you may be able to talk about what is important to you - is it living as long as possible, no matter what? Is it retaining whatever independence you have in areas such as walking, hearing, and seeing? Or is it just being as comfortable as possible?
Explain your views to your family and your physician, who can then help translate these goals into practice. Also choose one person to speak for you - to be your surrogate or health care proxy - in case you are too sick to speak for yourself.
RD: In the book, Ruth Schatz, 93, is suffering from dementia. She is also stuck with a high-powered defibrillator that keeps going off. What can be done?
MG: Whenever an older person develops a new medical problem, it's important to think about how to address that problem in the context of the whole person, not just his heart or his kidney or whatever is failing right now. A person who develops heart problems and has progressive dementia may warrant a very different approach from a vigorous older person with the same heart problem. Typically primary care physicians or geriatricians are better at dealing with this sort of issue than specialists.
It's also important to review the overall situation periodically - drugs or devices that make sense for someone at a particular point in time may no longer make sense later. They should be discontinued or turned off if they are no longer serving the original purpose.
RD: You consider community essential for a good old age. Will you please elaborate?
MG: One of the greatest challenges in dealing with older individuals is to help them find meaning in their lives. Typically they are finished with child-rearing and have retired from their occupations. They may simply feel superannuated.
The ways most people find meaning are through participation in something larger than themselves, in their community. They need to find ways to give to that community, whether it's through tutoring elementary school children or providing advice to out-of-work executives or teaching English as a foreign language to new immigrants.
But for older people to find such opportunities, the community needs to make them available. Transportation for older individuals will have to be provided. Part-time work needs to be acceptable. Only if society recognizes its responsibility towards the elderly will the elderly be able to give to the surrounding society.
RD: You say, "A good old age is within our grasp. But we must reach in the right direction." Can you please explain?
MG: There are three or four things to keep in mind.
First, we need to change our personal behaviour. I said we shouldn't put our faith in exercise, but that doesn't mean we shouldn't do what little we can to stay limber. Exercise markedly decreases risk of heart disease, the leading cause of death in people over 65. Exercise can help prevent obesity, increasingly recognized as epidemic. And people who stay fit tend to stay self-sufficient. They can carry groceries and go up the stairs.
We should keep moving but probably shouldn't make so many geographic moves.
Cultivating relationships with family and friends mitigates against loneliness. It also has effects on health - social contacts influence the rate of recovery from a heart attack, a stroke, or a hip fracture. Finally, social engagement can help delay the onset of dementia and minimize its impact.
Second, in the realm of preventive medicine, we need to stop obsessing about things that no longer matter, resisting the impulse to request Pap smears and prostate specific antigen tests, and start paying attention to new areas that do matter. Falling and breaking a hip presents a far greater threat to independence and happiness at age 85 than does cervical cancer. We also need to consider intermediate care not just aggressive care or hospice.
Also, it's important to give people tools to help them change their behaviour. For example, we need to have some kind of continuing health education for older people. We may need prolific peddling points to encourage exercise - something like frequent flyer miles. We could have password protected sign-in sites with exercise bikes. At approved weigh-in centres, we could get points for achieving exercise and weight goals that could be used toward purchase of medications or other medical services not covered by insurance.
Third, institutional changes are also imperative. Nursing homes need to be more resident-centered. There are models of care that let residents decide when they will get up, what they will do.
As well, assisted-living facilities have to allow for negotiated risk. Diabetics may not want tight control of their blood sugar if it means forgoing the few pleasures in their lives. The facility shouldn't be penalized for serving sweets, provided residents have a choice and make an informed decision. A wobbly person may not want to use a walker, even if she risks falling. Again, the facility shouldn't be penalized for falls, provided residents are offered physical therapy, encouraged to use walkers, and they declined based on understanding of risks and benefits.