Life is full of surprises, but statisticians tell us that most Americans who make it to age 65 can expect to live to almost 85, and about 1 in 4 will live past 90. Credit goes to improvements in public health, and to medical breakthroughs that have turned diseases such as cancer from death sentences into chronic diseases. One result is millions of older people with multiple chronic illnesses (heart failure, diabetes, COPD, cancer, and others) who can nonetheless expect to lead long lives.
And there's the rub. Now that these conditions typically allow people to live into old age, those same people may find some of their extra years compromised by pain, medical complications, depression, and disability.
As Medical Officer of the American Federation for Aging Research, I applaud and advocate for the scientific breakthroughs that make such survival possible. At the same time, as a geriatrician, I see the pain, loss of independence, and stress among vulnerable and frail elders; I believe it is the duty of all health care providers to acknowledge and address these problems, and make their relief a major focus of treatment.
One powerful and important response to this paradox is the fast-growing field of palliative medicine.
The first principle of palliative medicine is to relieve the pain and other symptoms that burden people living with serious illness -- in short, to help people feel better. Because complex illness thrusts patients into a decentralized and often confusing health care system, palliative care seeks help from many sources, including doctors and nurses specializing in pain control, social workers, chaplains, nutritionists, rehab specialists, pharmacists, and others. In addition to systematically addressing pain, palliative care helps coordinate complicated medical care; helps patients and families clarify their own goals and priorities and understand their treatment options; and offers support, counseling, and community resources to reduce family and caregiver stress -- a serious health risk in its own right.
Unfortunately, because palliative care is a relatively new specialty, it is often misunderstood by patients, families, and even some physicians.
Five Misconceptions About Palliative Care
Misconception #1: If you accept palliative care, you must stop other treatments. This is not true. Our health care system, financed by Medicare, Medicaid, and almost all health insurance plans, now recognizes that many people who are nowhere near death can benefit greatly from the additional support and pain and symptom control palliative care offers, and does not require people to choose.
"We need to think about palliative care not as care at the end of life, but as improving a patient's quality of life," says R. Sean Morrison, M.D., professor of geriatrics and palliative medicine at the Mount Sinai School of Medicine, a Paul Beeson Physician Faculty Scholar in Aging, and director of the National Palliative Care Research Center. "For the vast majority of patients living with chronic illness, both life-prolonging and palliative treatments are necessary and appropriate."
Misconception #2: Palliative care is the same as hospice. Again, not true. Palliative care should not be confused with the hospice benefit offered by Medicare. Unlike palliative care, hospice does require a patient to be certified, by two doctors, as being six months from death, and does require stopping most curative treatments. Hospice care always remains an option, if and when it becomes appropriate, for people who have received palliative care.
Misconception #3: Electing palliative care means you are giving up. In fact, quite the opposite is true. A new perspective and new resources to improve quality of life are provided for the patient.
There is every reason to take steps to treat pain, starting with evidence that unrelieved pain may produce mood disorders, notably depression, and can actually hasten death. Choosing palliative care is not about trading time alive for comfort -- it is about trading comfort and time alive for time spent suffering.
Misconception #4: Palliative care shortens life expectancy. Again, not true. In fact, important recent evidence now indicates that providing palliative care alongside standard care not only improves many people's quality of life, but also extends their lives. This appears to be true particularly when the palliative care is added early in the illness.
An important study of this phenomenon published in the New England Journal of Medicine in 2010 studied patients with metastatic small cell lung cancer, a very serious diagnosis that is almost always fatal. All patients had available standard cancer care (surgery, radiation, chemotherapy), and half also got early palliative care. After 12 weeks, the people who received palliative care reported less depression, were less likely to receive aggressive measures such as chemotherapy in their last week of life, and actually lived longer (an average of 2.7 months) than the people who did not receive palliative care.
Why did adding palliative care yield such a remarkable result? The truth is, no one knows for sure, and more research is definitely needed and is being conducted. It may be a combination of factors, including more personal attention from physicians and other providers. But, as my friend and colleague, Diane E. Meier, M.D., who leads the Center to Advance Palliative Care and won a MacArthur Foundation fellowship for her pioneering work in the field, wrote in her accompanying editorial with Amy S. Kelley, M.D., "Perhaps unsurprisingly, reducing patients' misery may help them live longer."
Misconception #5: There isn't much need for a palliative care consultation because my doctor will address my pain anyway. I wish this were true, but for a number of reasons, it often isn't, especially in the case of older patients, who experience disproportionate amounts of unrelieved pain, particularly if they have dementia or other cognitive impairment.
Very sick older people may see many doctors, including specialists, and it may not be clear which one is primarily responsible for initiating and delivering palliative care. Access may be a problem, although 8 out of 10 large- and medium-sized hospitals, and all Veterans Affairs hospitals, now offer a palliative care service. More palliative care options are needed for people receiving care as outpatients. Finally, some doctors just are not on board yet, and either regard disease eradication at all cost as their primary duty, or do not want to open the palliative care conversation with patients and families because of their own discomfort or concern about stigma or decreasing hope.
In fact, some advocates believe skepticism among doctors is still an obstacle. Reflecting on the lung cancer study in which palliative care increased patients' survival, the deputy chief medical officer of the American Cancer Society, Dr. J. Leonard Lichtenfeld, has written, "If that degree of improvement in life expectancy was seen in a clinical trial looking at survival after treatment with a new chemotherapy drug, there would be applause all over the place. Instead, I fear that many physicians will just yawn and say something to the effect of, 'here they go again with that pain stuff.'"
On the other hand, it was doctors, including Diane Meier and Sean Morrison, who looked at the problem of unrelieved pain, envisioned a very different set of possibilities, and launched the field of palliative medicine in the first place. "Our own suffering as professionals grew out of our distress at how little was being done about the physical, emotional, and existential problems of our patients and their families," Morrison says. "We saw firsthand how well-intentioned but wrong-headed much of the care seemed to be."
Making wise choices about appropriate medical care for an ill older adult is complicated, and only gets more complicated over time. As a geriatrician, my view is that after a certain age, virtually everyone should consider a palliative care consultation. To put it bluntly, the closer you get to your average life expectancy, the more important it is. Second, the health care system needs to do its part: Not only should all patients feel comfortable asking for this help, but all physicians should be trained to talk about it and be able to facilitate, if not deliver it. Finally, all medical institutions should support it. Palliative care embodies many of the core values of geriatrics and, as such, it is simply good care. We know how to do this, and it is time more people experienced the benefits of palliative care.
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