End-of-life Care Conversations: Are they worth having?

An article published in the New York Times this week by Pauline W. Chen, M.D. provided some very interesting information about the benefits of frank discussions about death and dying between a patient with a terminal illness and their physician. In particular, the study focused on how such discussions improved the quality of life of a patient and their caregivers. An excerpt from this article summarizes the surprising results of this study:

What Dr. Prigerson and her co-investigators found was that those patients who had had discussions with their physicians were more likely to have better quality of life at the end of their lives. These patients were not more depressed or more worried as a result of these discussions, and they tended to receive less aggressive medical care and earlier hospice referrals. Moreover, their caregivers fared better and suffered from significantly less depression six months after the patient’s death than caregivers whose loved ones had received more aggressive care.

From experience, I know that this isn't an easy conversation to have. And I know that many doctors are not terribly comfortable having these conversations either. In fact, I've known of some physicians who studiously avoid this conversation even with terminal patients. Dr. Chen reported from a conversation with one of the lead researchers on the study that

“There is almost an assumption a priori that these end-of-life discussions will cause harm, so doctors are afraid to have them,” Dr. Wright said. “Patients then fail to realize that their time is limited, and they don’t make the kind of choices they would if they did know.”

The point is, you can't always know what the comfort level of your physician will be with regard to this topic. However, it's not a topic that should be ignored. You may have to force the conversation, or you may have to find a physician that is not afraid of the topic. Either way, there can be significant benefits for you and your loved ones by becoming educated about the dying process and end-of-life care options available to you.

But the conversations shouldn't be limited to your physician only. These conversations should also be had among family members where appropriate. Although it's a difficult conversation to have, it can nevertheless be an incredibly healing and growing experience. I will never forget the conversation that my sisters, my mother and I had on this topic with regards to some of the end-of-life decisions we were facing with my dad as his dementia progressed. Although we approached this conversation with apprehension and even some distaste, we all left the conversation very relieved and enlightened by the experience. And once the conversation began, it was much more natural and helpful than I had expected. The hard part was sitting down to have the discussion in the first place.