Giving Up the Struggle for Life – Second Thoughts

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[Please note an important clarification by the husband of the subject of the the article. It appears in the comments that follow the article.]

She had become a palliative care physician, having survived a bout of cancer herself. She had helped her patients utilize the most effective means of managing pain, and she also encouraged them to accept the reality of their imminent death, and give up part of the fight for life in favor of greater quality of the limited life that remained theirs. When faced with an aggressive recurrence of her tumor, she could not bring herself to accept her own advice.

Our community has long advocated better use of palliation as an alternative to the often knee-jerk demand that patients do the “right thing” and give up prolonging life when there is little chance of recovery, or more recently, when the price is too high. Getting patients to accept their fate is a trickier issue, especially when there are reasonable chances of extending life. The article about the life and death of Dr. Desiree Pardi touches on many issues of interest to us: the tenacity of the struggle for life; the difference between the perspective of health-care providers and patients; the difference between patients willing to sign DNR’s when they are matters of abstraction, and when they are confronted with more immediate signs of their mortality; the pros and cons of providing patients with all information about their condition. (Dr. Pardi decided that she did not want to know about the extent of her illness, and chose her husband to act as an intermediate between her physicians and herself. It is reminiscent of the psak that a person can be mechalel Shabbos to prevent physicians from telling a patient the full extent of his medical difficulties when it might influence the patient to prematurely give up the battle for life. It also reminds us of the Ohr Someach’s instructions to his physicians to tell him nonetheless, because he was certain that the knowledge would not affect him – and his subsequent confession that he had made the wrong decision.)

The article is worth reading – and worth saving for use R”L at the appropriate times and places.

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4 Responses

  1. Robert says:

    I am Desiree’s husband and while I appreciate the numerous comments posted and the fact that this “story” has generated so much discussion, I need to convey that the article was misleading and that many of the take away messages are wrongly presented.

    My wife, knowing her life was going to be shorter than most spent her remaining years promoting the value of Palliative Care; something she herself fully accepted in her life.

    The problem is most people lump Palliative Care and end-of-life care as one field of medicine. They are two separate disciplines. Second Palliative care is about providing symptom support throughout all stages of a chronic disease; it is about providing patients with a full understanding of their condition and treatments so they can live a life they want. Isn’t that what it’s all about?

    My wife never coerced people into ending a fight, she herself believed that is a personal decision – but patients have to know what they are getting into. They need to know the likely effects of treatments such as that from CPR, and know that sometimes getting on a respirator means you may never get off one. She believed in people needing to know the truth and planning accordingly.

    She also believed no one should ever take away or overwhelm your coping mechanisms, her’s being using me as her information buffer (inaccurately referred to as “denial” by many). We had a medical team and a wonderful oncologist for over 5 years who supported her while using me as that buffer. My wife was aware that she would most likely die in agony, and that financially I would be burdened with excessive credit card debt and emotional exhaustion. Yet, we agreed to go that route. I stopped working and learned how to function as a home health aide to support her.

    We were well aware that our choices were setting her up for increased pain which she was willing to endure, but she told me that if a time comes when I need to make a choice to withdraw care that I should remember there is a difference between extending life and extending death. She said that if her body was too sick to be saved, she would not want to be “saved” if she could not function at a high level. We had that discussion, another aspect of Palliative Care – my wife lived and breathed palliative care every day.

    Please understand Palliative Care is about providing people the information they need (and avoiding false hope) so each and every one of us can make a decision about how we want to deal with a chronic disease. It is about quality in life and quality in death and tailoring a medical plan to achieve those goals.

    She did not want Palliative care to visit with her in Boston because it overwhelmed her coping mechanisms, because she wanted me to be the buffer – not because she did not believe in it. Note that you are reading quotes from countless hours of being interviewed; their true meaning is lost in this “story”.

    One thing my wife wanted was for people to learn, to discuss, to explore the concept of palliative care based on her illness and I am thankful so many of you are discussing.

    Rob Pardi

  2. Melanie says:

    Would you cash in your children’s house or your grandchildren’s college education to do so?

    Your example the “easy” case – savings earmarked for someone else’s future being reapportioned for one’s own survival. Presumably the children would have other means to provide for shelter, and the grandchildren could go to CUNY.

    The tougher question is whether one individual should sacrifice his own financial security for costly life-saving measures of another.

    In either case the family should take advantage of Rabbinic guidance. The choice is never as simple as money vs. life.

  3. aj says:

    what is the source for the story about the ohr sameach (I’d like to read it if I can)

    [YA – I was thinking the same when I wrote the piece :-( I heard this many years ago. Perhaps one of our readers can help us out.]

  4. Izgad says:

    How much is it worth to keep someone alive, but in great pain for another six months? Would you cash in your children’s house or your grandchildren’s college education to do so?