The problem of inadequate discussions of end of life wishes

The Annals of Internal Medicine occasionally reviews the articles and studies of note in a particular field of internal medicine for those of us who don’t read all of the specialty journals. Recently, there was an update in pulmonary and critical care medicine, the internal medicine specialty that is most intimately involved with caring for the very ill and those people who are at the ends of their lives. Nestled among articles on diagnosis of tuberculosis and novel treatments for non-small cell lung cancer is one about palliative care, that is medical interventions intended to make people more comfortable as they die.

This article, published in the New England Journal of Medicine by Dr. J.S. Temel and colleagues from the Massachusetts General Hospital in Boston, looks at quality and length of life in patients with recently diagnosed incurable lung cancer, cancers that have spread metastatically beyond the lung tissue.  These patients cannot expect to be cured of their cancers, but will be offered many treatments intended to lengthen their lives and shrink their tumors. About half of the patients were offered visits early in their treatment with the palliative care team, to discuss what kind of treatment they wanted at the end of their life, including resuscitation and life support, but also pain and other symptom control. The other group received standard treatment, which might include palliative care, but usually not until life prolonging therapy was found to be ineffective. The patients assigned to early palliative care consultation received less intensive treatments as they were dying, but they also had a significantly better quality of life and they lived longer.

An article like this doesn’t explore the individual stories of the people who were involved, but I’m thinking those stories would be pretty interesting. Without those stories, one can only speculate what made the early palliative care group happier and healthier. My speculations would include that it was comforting to patients to know that they would be well taken care of and their suffering would be relieved when it was their time to die. Other factors might include family members being reassured by open conversations about the end of life, leading to better care at home and more contact with doctors who are good listeners and take the time to really discuss the patient’s and family’s concerns.

It is also interesting to note that the group with early palliative care, though receiving less intensive medical interventions at the end of life, lived longer than those with more intensive interventions. Intensive care was not “rationed” as frightened legislators might think, but rather used appropriately for the individual.

The whole discussion of death panels sort of escaped me when it came around the first time and when it has recurrently resurfaced. End of life discussions have always been a part of practicing good medicine, and it would be nice to be paid for them specifically so that more physicians would take the time to do them properly.  A panel of physicians would not be particularly good at talking to people about death and so a death panel, even if it weren’t just a figment of a paranoid imagination, would be terribly inefficient. One of my patients, a 90 year old woman, expressed fear of death panels several months ago, and after explaining that I wasn’t sure where that idea had sprung from, we had a good, simple and productive talk about what kind of therapy was available to her should her heart stop or her other functions cease to be, and we were able to document exactly what she would want should she not be able to express her wishes.

As doctors who frequently admit patients who normally see other doctors to the hospital, my partner and I are often on the receiving end of the problem of inadequate discussions of end of life wishes.  Very ill or dying patients will be admitted to the hospital, with one of us as their doctor, and have never discussed with anyone what kind of care they would want.  They are often too sick by that time to talk about it or think about it, and even if they were capable, they don’t know me or my partner from Adam, and reasonably don’t have the level of trust necessary to allow us to help them make a good decision. This leads to heartache and wasted effort.

So what I see as the take home message of this New England Journal article is that discussions of end of life preferences including life support but also ways to receive comfort do not need to be depressing, but can be affirmations of life’s value and our own self determination. When a doctor opens up this area for a person and his or her family to talk about, fears can be allayed and options can be explored. Death is just about always difficult in some way or another, but there are many ways to handle it that help to maintain our love and humanity.

Janice Boughton is a physician who blogs at Why is American health care so expensive?

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