Missing at the End of Life- Courage

I talk about death a lot, almost every day. With healthy patients I talk about the need for advance care planning and the need to prepare for the unexpected. One of my common questions is, “If you walked out of my office today, fell and hit your head and suffered brain damage, have you made it clear to others what your wishes would be?”

The answer is almost always, “No.”

I then talk about “advance directives,” legal instructions about how one would want to be treated if something happened and they were unable to speak for themselves. I typically hand the patient a Durable Power of Attorney form that includes a section in which patients can clearly state which essential functions they equate with an acceptable quality of life. I tell them, “If you and I went to a local nursing home and walked the halls, the chances are that we would eventually see someone who was so debilitated we would say, Don’t ever let me end up like that!” I say that if we were asked why we would not want to be in such a debilitated state we would say. “Because they can’t _________” and that we would fill in the blank with those functions we believed essential, such as the ability to communicate, recognize our family, feed ourselves and do personal hygiene. My description is usually met with nods of agreement, as I have learned that most people have a clear understanding of what an unacceptable quality of life would look like for them.

While there is near universal acceptance of the idea that life can reach a point where it should no longer be prolonged it is still only a fraction of patients who take the time to write their wishes down. Less than half of the patients with whom I have these conversations takes the time to fill out the forms I give. I do not know if it is due to denial, forgetfulness or laziness but  regardless of the motive, the result is the same. Most people have not clearly communicated their wishes regarding end of life decisions. When terminal events occur, too many families find themselves in the hospital discussing life and death decisions with a doctor they have just met. As these conversations are uncomfortable and difficult patients can and should make their wishes known.

Sadly, I have learned that even clearly communicating one’s wishes is not a guarantee that they will be honored. I once had a patient who was terminally ill and who had clearly stated her wishes regarding end of life care, so much so that she had completed paperwork instructing physicians and paramedics to never resuscitate her if she went into cardiopulmonary arrest. As clear as her wishes were, her family did not follow them when the time came. Fear and panic set in and those wishes were not communicated to the paramedics when they arrived. Against all of her known wishes she ended up on a breathing machine in the ICU.

Her case reminded me that it is not enough for physicians to discuss end of life issues with patients. We need to encourage patients to have discussions with their families as well. Frank discussions need to be held so that everyone knows exactly what they will do when the moment arises. Patients need to be certain that family members not only know their wishes but are committed to honoring them when the time comes.

Physicians need to do their part as well. We need to be committed to supporting our patient’s wishes and making sure they are honored. On too many occasions I have seen physicians continue treatment in order to appease the demands of unsupportive family members. The adage seems to be that dead patients don’t sue but their families can. At times some doctors are more interested in avoiding a lawsuit than they are in honoring a patient’s wishes.

It is easy to criticize doctors for continuing needless care but there is plenty of blame to go around. Hospital administrators and lawyers need to step and support physicians and make it easier for them to do the right thing. Efforts need to be made to change the culture of healthcare around the end of life. Death needs to be treated as a normal outcome of life. It cannot and should not be viewed as a sign of failure. The clearly stated priority for terminally ill patients needs to change from doing everything possible to prolong life to doing all we can to provide comfort and dignity at the end of life.

This change will require courage. Patients will need to have the courage to face their mortality and plan for the end of life. Families will need to have the courage to face their fears and to honor their loved ones. Physicians will need to have the courage to lead, even when the journey is difficult.


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