The Right to Live

After generations in denial, doctors and lawmakers are paying attention to
the importance of allowing sick people a dignified death, and to the value of
helping patients and their families let go and say good-bye. Aggressive medical
intervention in terminal cases is increasingly considered an avoidable cruelty,
inflicted on a suffering patient by someone — occasionally a doctor, but more
often a family member — unable to acknowledge the inevitable.

As an intern, I see this almost every day, and I’m grateful that most
physicians now go out of their way to emphasize to patients and their families
the limitations of medical technology. Medical students attend lectures on
caring for dying patients, and medical journals remind doctors of the importance
of letting patients die with respect and, as far as possible, without pain.

But as an experience in my own family made clear, this newfound concern for a
good death can be taken too far during a patient’s final days.

My uncle was diagnosed a year ago with metastatic cancer. Late one night last
March, he became acutely short of breath and was rushed to the cancer center
where he had been undergoing chemotherapy. My aunt called his doctor, who she
said sounded irritated at being awakened at 4 a.m. to deal with a terminally ill
patient suffering from a bacterial infection of the lungs. The doctor’s message
was clear: What’s the point of treating it if he’s just going to die anyway —
if not today, then tomorrow, or next week.

My aunt pleaded with the oncologist not to withdraw care, insisting that even
through his extremely painful cancer therapy, her husband had savored life and
the opportunity to spend more time with his family. The oncologist eventually
relented, ordering antibiotics to treat the pneumonia that had developed in my
uncle’s vulnerable lungs.

I have heard many conversations among physicians about incidences like this
one — often with the doctors expressing frustration that yet another family
seemed unwilling to accept a difficult diagnosis.

Remarkably, my uncle — always a fighter — rallied. After a couple of
touch-and-go days, he recovered from the infection and was soon discharged from
the hospital. Over the next several months, he went to work part time, attended
his granddaughter’s school play, enjoyed a Father’s Day cake and celebrated his
44th wedding anniversary, mugging for the camera while my cousin snapped away.
When he finally passed away in late June, I don’t think anyone would have
questioned the quality of his last few months of life.

Doctors see a lot of death, and it is difficult for them not to become
fatalistic. But if ”facilitating the transition” out of life is to be a skill
for the new physician, this should include not only the avoidance of unnecessary
treatment. It should also require the vigilance to extend life when that makes
sense, always remembering how much living some patients can compress into an
additional day, an extra week, an unanticipated month. I have the pictures to
prove it.

David A. Shaywitz, an endocrinologist and stem cell scientist by
training, writes frequently about health and science. He is a
management consultant in New Jersey and a member of the healthcare
practice of the Boston Consulting Group. This article originally
appeared in the
New York
Times in 2000 when
the author was a medical intern at the Massachusetts General
Hospital and a clinical fellow at Harvard Medical School.

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14 replies »

  1. Tom –
    You got it. What was so frustrating was that the oncologist (at MSKCC, incidentally, and disappointingly) was so eager to treat a curable intercurrent illness as a convenient mode of exit, suggesting to me a sense of devaluing the (remaining) life of a nice man with a bad cancer (pancreatic CA).

  2. Sigh.
    This man was not “kept alive” and this is not a case of medical futility, no, not even close. He had a perfectly curable infection, which was cured and he lived long enough to die of cancer. What isn’t clear at all from the story is whether the CHEMOTHERAPY had anything to do with it. But the abx clearly did.

  3. The Montana Supreme Court is hearing arguments today on whether there is a constitutional right to die in that state. A physician is being sued for refusing to assist in the suicide of a terminal cancer patient. If the plaintiff prevails,imagine where this could lead us and the medical profession? http://www.MDWhistleblower.blogspot.com

  4. Anecdotal stories are always misleading, one way or the other. Perhaps the oncologist at the time of accepting this patient should give full disclosure (in writing) regarding his philosophy on end of life issues, complications of chemotherapy and cancer specifically before the critical time descends in the middle of the night. (informed consent) The family and patient can decide to stay with the oncologist or find another. A cancer center should have a system in place with nursing and/or physician education for families of cancer patients. Surgeons are legally required to do so, why not oncologists, internal medicine doctors, etc?

  5. Margalit,
    I agree with your comments. I’m told that only about 30% of the elderly have executed living wills or advance medical directives. I think this is something that we could more proactively encourage. Perhaps a public advertising campaign like we do to try to get people to stop smoking might be useful. Or, maybe we could make it a voluntary part of the process of enrolling in Medicare upon turning 65. It would be helpful if these documents could be stored in a central or regional registry that could be easily accessed by doctors and hospitals when needed.
    At the same time, I’m told by knowledgeable practitioners that living wills are not nearly as helpful as one might think. Moreover, when someone indicates what medical care they want or don’t want while sitting in their lawyer’s office hale and hearty might be quite different from what they want when they are actually terminally ill.
    As a previous poster indicated, I believe cost and who pays is also a significant issue in a real world of finite resources. I have absolutely no problem with someone who wants to spend their own money on futile end of life care. When taxpayers or insurers are paying, however, I think it is reasonable to expect providers, patients, and families to be realistic and sensible. If they would not be willing to spend their own money, assuming they had it, for care that may do little more than prolong the dying process, we shouldn’t be spending taxpayers’ or insurers’ money either. The reality is that we need to set limits but we need to set them as fairly and as ethically as possible. In the end, it’s just part of defining and applying good, sound medical practice.

  6. It’s always an advantage to think positive, despite all the odds against you. You never really know when you will bounce back from such a tragedy. I have always been against euthanasia and believe that everyone has the right to live their lives to the fullest.

  7. These discussions are pretty futile. There is not now, and there will never be, 100% exact evidence to support either course of action. David’s slippery slope is all too real and Dr. Motew’s unwillingness to pay for futile treatments is fully justified.
    So instead of debating whether WE should pull the plug on grandma, why don’t we ask grandma, BEFORE she becomes demented.
    If we must regulate something, regulate the necessity to have advance directives on file (somewhere where they can be easily accessed). Most people will not choose to be kept alive when demented and bed ridden or stuck in a hospital bed hooked up to machines, but most people don’t bother with advance directives either.
    The buzz now is all about consumer directed health care and personal responsibility of one’s health. How about expanding the definitions and have consumer directed end-of-life-care?

  8. I don’t see treatment for an infection as heroic. If that’s all it was then who would argue about treatment. Treating the infection may have just meant a more peaceful death. But were the last few months more memorable than the last several decades? And what if it took several months of machine assisted life support in a hospital bed – would the last few months also be memorable?

  9. The story of a good life after presumption of death occurs too frequently to be ignored as we explore moving from private to public health care. I could never understand why physicians choose to try and time the death of their patients when they have been so univerally unsuccessful at such predictions in the past. And besides, we learn even from the terminally ill how to help someone else.
    The question that needs to be answered is “what is the value of life. and to whom? Beauty is in the eyes of the beholder, let’s not forget it.

  10. As always, appreciate all comments, slightly different take on Anon’s (very thoughtful) remarks: I don’t think this case was all that exceptional/unusual; rather, I worry that there is a tendency, especially among doctors such as oncologists who must deal with so much death, to become somewhat fatalistic, and seek (often in the name of mercy) to hasten the exit of the terminally ill. I do worry it can be a bit of a slippery slope, from helping the dying transition, to helping the nearly-dying transition, to helping the somewhat nearly dying transition, to helping the old and may get sick and die transition, etc. It’s important to distinguish between efforts to save the patient from pain and efforts to save the physician from the very real challenge of dealing in a prolonged fashion with the terminally ill. I do worry about the development of increased societal pressure for the ill and aged to “close up shop,” as if living, and cherishing life, has become (for them) suddenly a selfish act.

  11. When clinging to the last vestige of control and dignity, no one should impede on an individual’s (or poa’s) choice regarding end-of-life issues. Guiding these decisions will be both well-trained and some not-so-well-trained practitioners of the difficult art of “end-of-life” care.
    The current reform/political question is: “Who pays for it?” I have no problem with a family keeping their 95 y/o demented, bedridden father on dialysis, but understanding the futility of such treatment (and yes some will call me heartless), I don’t want to be the one paying for it.
    Post your reform ideas at reformplan.org.

  12. Here is the rub.
    This was a treatment success. However, if you take 100 folks with the same diagnosis, applied the same interventions, and lets say 84 passed away–do you still draw the same conclusions?
    Until we have the indicators to determine who has the better prognosis (not forthcoming), arguments can be made on both sides.
    How many of these folks will go on to have productive months or years of living (like the gentleman above) vs horrific, costly ICU deaths?
    The above case is more the exception than the norm, but the anecdote needs more conclusory disucssion to bring the point home, mainly, we have no answers in 2009. Just look at the letters to the editor in todays WSJ as a case in point.
    This kind of story, while demonstrative of how we need to put the brakes on “pulling the plug on grandma,” also raises the specter of “treat everyone,” which in my book, is just as bad.

  13. Understanding futility is vital. More work is needed.
    I find oncologists to be overly funereal.
    The doc should always provide the care desired by the poa and responsible family member.

  14. It’s great to see this article because you usually see articles about the “right to die,” but never to live. Doctors do become desensitized the longer they practice, and I think it’s their way of protecting themselves from the pain of losing patients. However, sometimes this defense mechanism works too well where they forget about their patients’ feelings.