Quality of life, quality of death, and “end of life care”


Here in the USA, while our legally elected representatives in Washington, DC, pontificate about “death panels” and try to score political points over which of our two major political parties is more likely to “ration Grandpa to death,” most of us do, in fact, appreciate that we are going to die (at some point) and that we would prefer to do it at home with some degree of dignity.

This is not a theoretical discussion for men with micrometastatic or evident, metastatic prostate cancer … because there is a very high chance that their cancer is indeed going to be the cause of their demise. The issue therefore needs to be addressed — however uncomfortable the subject matter.

For men with progressive prostate cancer — whether they be 45 or 85 years of age — once standard hormone treatment (with at least medical or surgical castration) is no longer able to delay disease progression, there is still no other form of therapy that has been able to demonstrably delay the progression of castration-resistant prostate cancer for more than a few months. We have made enormous progress in the development of new therapies over the past 4 to 5 years — but that progress has yet to demonstrably add a year of life (on average) compared to docetaxel-based chemotherapy.

During the same timeframe:

  • We have begun to witness both a real recognition of what hospice care can achieve (by comparison with intensive care) for people who are nearing the end of life — for whatever reason.
  • We have started to accept the idea that heroic efforts to keep some people alive is neither in their best interests as an individual nor is it even humane when considered in terms of their quality of life.
  • We have started to recognize that the costs of heroic intervention to keep every heart ticking and every set of lungs processing oxygen are potentially unaffordable — for individuals and their families, for charitable institutions, and for society as a whole.
  • Many of us have actually had our parents or other relatives make very clear to us that they do not want such heroic efforts made to keep them alive when they are clearly dying.
  • Some of us may have put our own “living wills” and “do not resuscitate” policies in place to ensure that heroic efforts are not made to keep us alive beyond our bodies’ and our minds’ ability to function with an acceptable quality of life.
  • A randomized clinical trial at a major US hospital has actually proven that for patients with late stage, metastatic, non-small cell lung cancer, hospice-type palliative care (including appropriate chemotherapy) actually increased the survival of patients (albeit briefly) compared to aggressive interventional chemotherapy (see Temel et al.).

Exactly what an individual patient is willing to do to try and delay the progression of metastatic prostate cancer is a very personal issue, and The “New” Prostate Cancer InfoLink does not have any opinion about what is right or wrong with regard to the treatment of any individual patient. We do, however, have one very strong opinion, and that is that the family of every patient who is dying of prostate cancer — or indeed any other form of chronic illness — needs to understand and honor what that patient wants to have done when he or she is no longer fully capable of making those decisions (or just needs moral support to help him or her have his or her wishes executed).

Some men will live for years with metastatic disease — and may do so with amazing quality of life. (One such patient on our social network is currently in training for an Iron Man event.) Others, however, may — unless appropriately cared for — have severe, chronic and acute pain, multiple fractures to the spine and other bones, and significant metastasis to the liver, lungs, and brain as their disease progresses. Despite all reasonable efforts their quality of life may be very low indeed.

Among the most distressing things we have seen in our extensive involvement in health care is men and women being kept alive in hospitals and other health care facilities who had no quality of life at all and (based on all reasonable expectation) no chance of recovery due to their age and the type of their illness. The “quality of death” for such individuals is often near to non-existant. If this was the option they chose for themselves or made clear to others that they wanted, that is their right. However, many people who end up in such situations do so because of the inability of their family members to “let Grandpa go” or the inability of the hospital or other institution to allow the patient to die for complex (or sometimes just simple) legal reasons.

Our deaths are our last opportunity to act with wisdom and dignity. We owe it to ourselves and to each other to facilitate a dignified exit from this world. This doesn’t mean one shouldn’t fight for every last week of life, if that is what one wants to do, but it does mean that there will come a time to “let go.” If one can arrange to do that at home, with one’s family close, and a smile on one’s face rather than a feeding tube in one’s nose, this would seem to be a wise and dignified choice.

This commentary was stimulated by the following recent news reports:

“Consider the Conversation” is to be shown on many PBS television stations across the country between now and the end of August.

7 Responses

  1. I had this conversation with my mother many years ago as she was in the hospital recovering from surgery for what was discovered to be pancreatic cancer. The end was clearly in sight. The request for an end of life directive was discussed that included the words “heroic efforts.” Her comment to me, which I treasure to this day, is that, “If there is to be a hero in this I want it to be ME.”

  2. Interestingly, Dr. George Lundberg (a former editor of the Journal of the American Medical Association) has also written a commentary about management of the end of life on the KevinMD.com blog site today.

  3. Could not have put better.

    Bravo!

    Stan Rosenfeld

  4. I’ve attempted to address this concern with the following:

    http://tinyurl.com/49wcrdj

  5. I had local prostate cancer and was treated for it: RALP and following that salvage radiation. The situation seemed to be under control and then I was diagnosed with gastric cancer, stage 4 and I am being treated with chemo. The two cancers are not related according to my doctors. The life expectancy for gastric cancer such as mine is around 12 to 18 months.

    When diagnosed I made sure my wills are known, filed an advanced directive form at Kaiser, and otherwise tried to put my affairs in order.

    I very much appreciate this post from The “New” Prostate Cancer InfoLink. If — or rather when — I approach the end, I would like to do that with dignity and the minimum of suffering. Everybody is entitled to their opinions and I am not passing judgment on anybody, but I don’t see the merit of burdening society with an expense of hundreds of thousands of dollars in order to suffer for a few more months.

    Thank you for your post.

  6. Our health care culture has little use for “quality of life” (a derisive, patronizing term if there ever was one) issues such as autonomy, capacity, dignity, and wholeness in its orientation towards saving lives, why would we expect the institution and its practitioners to suddenly value these intrinsic human rights, needs, desires in service to the dying?

  7. Dear Tracy:

    The health care culture you seem to inhabit may not value “quality of life” (which I certainly to not see as a derisive or patronizing term at all). The one I inhabit most certainly does … because I take personal steps to ensure that! This ball is very much in the court of the consumer and the patient.

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