Palliative Care – Not Just for the Dying

I used to think that palliative care was just for people who were dying. Then I found out—about a dozen years ago—that palliative care had expanded its original focus on end-stage cancer patients to include people with serious illness throughout the course of their disease (or diseases). Palliative care, I realized, is far more than hospice, a program that in the U.S. is effectively restricted to patients expected to die within 6 months.

With this shift in perspective, I decided to move from an emphasis on the geriatric population, principally the frailest and sickest of the elderly, to a concentration on patients in the last stage of life, regardless of age, and regardless of how long that stage might be expected to last. For some disease states, including cancer, this effectively meant people in the last six or twelve months of life, since it was only at that point that we could determine the seriousness of their condition with reasonable reliability. For other disease states, such as frailty or dementia, the relevant population included people who might live for several years with a progressive, ultimately fatal condition. So I was surprised and dismayed when I read the fine print in an otherwise important and insightful article published this week about palliative care—and discovered that the authors’ wise recommendations were confined to people with a prognosis of one year or less.

The reason that it is so important to move the conversation about goals “upstream,” to start the discussion long before life’s last gasps, is that patients often shift their perspective on what’s most important depending on their underlying health status. People who have moderate dementia, who might expect to live several more years, may well not want life-prolonging treatments that will simply allow them to live long enough to develop advanced dementia, particularly when the treatments are burdensome. People who are becoming progressively frail may not want treatments that are apt to have as a side effect an even greater degree of debility and dependence.

It may not be ideal to limit discussion of the goals of care to patients with a prognosis of one year or less, but maybe it’s better than the current reality, which often involves no discussion at all, or limiting such talk to patients who are moribund. The problem with such an approach is both that it means subjecting the hundreds of thousands of patients with dementia or frailty or progressive heart or kidney disease to invasive tests, procedures, and medications that they may not want and that it risks turning people away by, once again, equating palliative care with dying. Palliative care is not just for imminently dying people. It is for anyone with a serious, progressive, incurable illness. And since we can’t cure diseases such as congestive heart failure or chronic obstructive pulmonary disease or Alzheimer’s disease, and those are precisely the conditions that tend to afflict people 80 and beyond (and some who are younger as well), we need to think about palliative care for this entire population. Palliation is not just for the dying.

Dr. Muriel Gillick, who will qualify for Medicare in three years, is a geriatrician and palliative care physician, and a professor in the Department of Population Medicine at Harvard Medical School. She has written four books for a general audience discussing ethical, medical, and other issues arising in old age, most recently “The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies” (Cambridge, MA: Harvard University Press, 2006). She blogs at Life in the End Zone, where a slightly different version of this post was initially published.

12 Responses to “Palliative Care – Not Just for the Dying”

  1. Tanya

    I am sure MIT and other top level universities in America where Jonathan Gruber opens his mouth will see to it that the sick and elderly are taken good care of.

  2. Carol J. Eblen

    Yes! the connection of palliative care to “Hospice” Care as provided under the legal terms of Medicare insurance has produced a “misunderstanding” of the general public, as well, as to exactly what is palliative care and when is it appropriate and available? And what does it mean when the patient has to give up “curative care” to access hospice/palliative care?

    Palliative care, of course, should have always beem part of “curative care” —shouldn’t it? Would competent physicians treat elderly/disabled patients on Medicare/Medicaid aggressively without providing pain and symptom relief?

    In retrospect, maybe the separate and exclusive Hospice Entitlement under Medicare law was a mistake? The Hospice entitlement together with the 1991 Patient Self Determination Act under the law of Medicare/Medicaid, of course, had the goal of reducing end-of-life treatment costs when patients who were pronounced “terminal” (within six months of life) by their physicians would elect/choose to die outside of expensive ICU and CCU units in their own residences or in nursing home residences.

    Unfortunately, this goal of the 1991 PSDA was not fully realized because, of course, physicians weren’t placed under the provisions of the PSDA and had no legal obligation to seek informed consent for palliative care/hospice as opposed to curative care, did they?

    Now, as you say, the “powers that be” intend to extend the palliative care/hospice entitlment to one year in which these elderly patients with diseases that will most likely become terminal and kill them will be eligible under Medicare for BOTH standards of care, i.e. curative and palliative/hospice care. The view is, apparently, thast patients will be referred to Hospice earlier in the course of their illnesses and that this will save money for the Insurers Medicare/Medicaid/Advantage by avoiding expensive in-hospital treatments in ICU and CCU.

    But, what will this mean for these patients in the real world of the ACA where managed care and managed death reimbursement protocols will so often deny “curative” care and offer only “palliative/hospice care? Hospice then becomes mandatory and not “optional” and “reversible” as it is now under the law.

    I agree with your sentiments on the frail and elderly and senile, etc.. and that true palliative care should include discussions as to what kind of medical care is appropriate or inappropriate for patients at the beginning of their serious problem and not confined to the last year of these patients’ existences?

    There was a good video on The Medical Futility Blog just recently discussing the problem of advanced directives for care of the aged and senile who want to be able to avoid advanced senility and Alsheimers by means of legal advanced directives that will hasten their deaths under certain specific circumstances as indicated in their advanced directives.

    I respect you and your opinion and I know you come from a good place. Are you a proponent of single payer and universal health insurance?

    • robert thomas

      In my opinion hospice care is prematurely ramned down the throats of the average person who has no resources other than insurance or medicare to care for a loved one out side of a hospital or nursing home. My 91 yr old mother went into local hospital in Jacksonville Fla in April of 2012 for low 02 saturation levels. She eventually had a IV Bard filter placed in her venacava to catch any future blood clots that might come from her leg. She also was determined to have two small bilateral emboli in her lungs which would eventually be absorbed. After the proceedure I was told by the osteophathic residences at this hospital to place my mother in hospice because she would have chronic health problems in the future. I should not be selfish and let her go. When my brother and his family realised that she might be a problem to care for he joined sides with hospital in support of this. My mother was not terminally ill and did not want to die. Luckily for her she had made me her durable power of attorney and medical surrogate.My father and three other grandparents on my father’s side were all Drs in jacksonville fla. They were all dead at the time of my mothers illness. While going to college I worked at a hospital in patient care. I had intended to go to medical school but never got accepted. When I would not place my mother in hospice they said that she had dementia and plac ed her on risperdal,numenda and atavan. What she did have was a UTI that they did not want treat because of medicare reimbursement. They sent her to a nursing for rehab where she had a seizure that I witnessed.She went without oxygen for nearly five minutes and as a result had permanent neuroligical damage. To sum up she lived for another three and a half years at home with me as her nurse at an out of pocket cost of over 350,000.00 dollars. She did have some quality of life. After all quality of life is for the the person who is living to decide, not some government beaurocrate trying to play God. The current healthcare system in this country is out of control. There is no continuity of care in the hospitals because the day in day out care of a patient is turned over to a subcontracted hospitalist. There is no real chain of responsibity becaused no one person is accountable for patient outcome. The gov agencies that are supposed to protect the patients interests do nothing. They are paid for by medicare to protect medicare and the hospitals.All of this done to prop up the profits of the hospitals who are run by medicare. My Mother died Sept 9,2015..
      The one size fits all healthcare system would have let her die three and a half yrs ago.

  3. Alastair Macdonald

    Dear Dr Gillick

    I very much support your concept of the wider role of palliation in patients’ lives ( and death)

    I am fortunate to the extent that any health care that I might need in the future will not be in the US. It must be very difficult ; even for prescient US physicians, to be able to predict that someone will die within 6 months. This is taking the meaning of palliation well away from its original and current definition.

    Palliation derives from the Middle French word “palliatif” – under a cloak or covert. The meaning now I think embodies the concept of relieving or soothing the symptoms of a disease or disorder without effecting a cure.

    In New Zealand ( I speak as a recently retired renal physician) the skills of palliative care have had to be learned and incorporated into the everyday practice of such physicians. There are simply not enough Palliative Care physicians trained to be able to cope with the increasing demands of an ever changing patient demographic.

    I hope that in this way the sometimes difficult conversations about what level of care is appropriate will be addressed. Such an approach by a physician who is known and trusted by the patient may well be more easily accepted.

    This perspective echoes the “covenantal approach” espoused by Edmund Pellegrino and William May which emphasises the ideal that the practice of medicine is based on an internal morality derived from the nature of medicine itself. As doctors we should strive for excellence in the healing arts for the good of the patient.

    Kind regards

    Alastair Macdonald

  4. Francisco

    I agree completely, extend palliative care to all those in need not only the terminally ill need them.
    Find the most suitable for patients making their life more bearable, avoid unnecessary suffering should be a standard in medical work.
    The welfare and interest of the patient to make your life better.
    Greetings from Tot Dental

  5. Stephen Dolle

    Policies and practice with respect to palliative care, disproportionately affect those who are dying and being treated for chronic illness. So when the government (FDA, Congress, DEA) decided to reclassify “hydrocodone” to help mitigate abuse and black market sale of the drug, what they failed to account for was the fiscal and care impact on those most vulnerable.

    I wish I was not in the predicament of requiring pain medication daily, and having to now pay triple my previous costs and having to undergo many new steps to obtain what is otherwise the least expensive long term proven pain drug. But I am faced with this. And I can show proof that my pain mgt needs are in part due to complications of my hydrocephalus and undetermined auto immune disorder, largely due to failures in FDA oversight of CNS shunts, and wider QA failures in medicine. But in the scenario of public policy, it is the sick who become more at risk from “unintelligible” public policy.

    Having said the above, I believe one of the most under-utilized modalities in pain management, is in complimentary medicine. But it seems access to these therapies are largely left to the rich, those who craft health care policies, and their employees.

  6. Alice

    The goal of palliative care is to ultimately provide the best quality support services for a terminally ill patient and their family. This is not just about physical needs, but also psychological and social needs too. I am a Director of Care with Be Independent HomeCare, a private homecare provider in Ireland. While I cannot comment on the palliative care that is offered in the United States or your Medicare laws, I do agree that palliative care is not just for those who are most likely to die at any minute, but it is primarily for those who are terminally ill.
    I would look to the World Health Organisation’s definition where the (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

  7. Laura Troyani

    In researching what will soon become the PlanBeyond website, one thing that palliative care doctors that we spoke with mentioned was the challenge they have in separating palliative care from hospice care for their medical colleagues. Because palliative care includes, but is not limited to, patients in their last stages of life, these palliative care doctors saw some of their colleagues not bringing them in on consults where their services could have been of use. The more everyone (medical professionals or not) understand what palliative care is truly about, the more its benefits can be fully appreciated. Here’s one article separating hospice vs. palliative care.

    • January

      I lilleatry jumped out of my chair and danced after reading this!

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