End of Life Conversations are Becoming End of Life Confrontations

“How Dare You!”

Life can change in a heartbeat. Most of us believe that our lives, our loves and all the that things that make us who we are is a gift from a higher power. One that can be taken away as swiftly as it is given. But somewhere in the shuffle of taking kids to practice, catching up on emails, worrying about bills, and the search for the perfect barbecue, it’s all too easy to forget the truth of life. The one truth. The one single thing that life guarantees each and every one of us. From the moment we take our first breath,  life makes to us but one promise. The promise that our life will someday end.

“Who do you think you are?”

For some of us, death comes after a lifetime of achievement, for others all too soon. For many it will be feared, for others it will be welcomed as their bodies wither away. But for more and more of us in our increasingly sterile and safe society, it is simply not to be thought of at all. An unwelcome stepchild locked tightly away in the attics of our consciousness. Like a demon in waiting, we reshape it, remake it, remold it, until it becomes an ever distant sunset that bookends a romantic dream of a life full of love, accomplishment, achievement.

“You have no right to say that!”

Until finally, that inevitable day approaches. A man or woman in a white coat tells you the terrible news that your loved one is passing away. That yes,  they are alive and can be kept alive, but there is practically no chance that they could recover. They will never go back to the person they were before.

“Where’s my regular doctor?”

I am that man in the white coat. And these have been the worst moments in my career. My consolation is that the person I am speaking to has it much worse. This is the worst moment in their life. As their doctor it’s my job to save their loved one. But when that is not possible my goal shifts to guiding them.  To steer them away from false hopes and to help them face the inevitable. To shepherd  them away from wasting their energy, their emotions, their wealth on a futile adventure.

“Get out of here!”

Yet, despite my best efforts, there are those that sit behind a thick coat of armor that even the most gentle words, and sympathetic ear can not pierce. They return my attempts with little but contempt. With epithets that you see throughout this piece. With accusations of incompetence, of greed. They spur any notion of providing naught but comfort for what will be their loved ones final days. They demand, More. Better. Faster. Newer.

“Who the FUCK ARE YOU!”

I know it’s not personal. I know they’re simply grasping at hope, they’re not ready,  it’s not their fault.  It’s death rearing its head, its years of denial, but the anger scars none the less. Almost as much as the sight of a human being struggling against the inevitable. Forced into an overtime of intensive care with its pokes, prods, measurements and interventions that blur the line between prolonging life, and prolonging death.

“I don’t want to hear that!”

And I am not alone in this observation. A recent survey of critical care physicians like myself highlights the scope of the problem of providing futile interventions towards the end of life. During this study, physicians felt that 20% of the patients that they saw were receiving care which they would identify as futile. 69% of those patients never made it out of the hospital. Those who did were “severely compromised” with another 16% passing away in the next 6 months (total mortality of 85%). This is an increasingly important problem, as collectively ICU’s are becoming the final resting place for 20% of people in our nation. The total cost to continue  interventions in patients in which they were perceived to be futile was $2.6 million.

“Don’t say that!”

During a previous age there was no need to talk about the end of life. People didn’t live as long, and there weren’t the interventions available that we have today to keep them alive. Rural life provided an opportunity for people to become familiar with death in a way that our modern lives don’t.

But there’s a difference between living, and being kept alive.

Too often, the question doesn’t first come up until a person is in the ICU, the last and worst place to discuss it. That would be akin to asking someone who’s falling from a cliff if they want help. The answer is of course, yes. Except for many people we can only pull them up a small amount.  They are still going to fall when we let go. That’s the definition of futility.

Somehow, someway, we need to reconnect with our lives and our deaths. We need to stop fearing the inevitable. Doctors in outpatient settings need to start initiating these conversations. And patients need to understand that just because we are talking about it, doesn’t mean that your death is imminent. Nor does it mean that your doctor is giving up on you.  We need to have open and frank conversations with our families about end of life, and what we perceive as a life worth living and one worth leaving.

 “You are not God!”

No, I am not. But I believe that He is watching.

Related Posts: PTSD Among ICU Survivors,    Code Status and Living Wills, and Why They Might Not Matter.   Offer Hospice Patients a Smile

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  • disqus_wIxs2A8ZM3

    Thanks for this article drawing attention to a difficult topic. I have a few small critiques. First, the title is misleading. Nowhere in the article do you support the assertion that end of life conversations are becoming increasingly confrontational.

    Secondly, I think your conclusion is underdeveloped. Propose a solution or a way forward, even if only as an academic exercise. Hand-wringing phrases like “somehow, someway” don’t go far. For example, giving doctors the authority to deny futile care would be a solution. While implausible, it opens the door for discussion. Alternatively, discuss ways of approaching these difficult conversations, either by pulling in literature from other disciplines (e.g. psychology) or giving your own advice based on your experiences. I was left wanting more at the end of this article.

    • John Lynch

      I think you’re being overly critical here. The family comments that are interspersed throughout the piece are sufficient support for the “confrontation” label.

      As for solutions, again I think some are offered. Urging doctors to be more forthright about end-of-life options is an integral part of a solution. I’d add that exposure to videos of what end-of-life care in an ICU entails has been shown in a study at Massachusetts General Hospital to dramatically reverse patients’ and their families’ desire for some of that.

      If more families understood what these heroic measures entailed, they might be less anxious to impose them on their loved ones. Death with dignity should be embraced as part of a patient and family education effort to give a better perspective to all of the end-of-life experience.

      • disqus_wIxs2A8ZM3

        I think you misunderstood my criticism of the title. The article does not support the assertion that there is an increase in the incidence of contentious end of life conversations. The comments are anecdotal, and only represent a single physicians experience. Even those are not tied to a statement like “In my experience, these discussions have more frequently become contentious over x time.” That’s what makes the title misleading; it suggests a trend or change.

  • narayanachar Murali

    This discussion ideally ought to be held in a physician’s office between the doctor and a patient who is stable and capable of making critically important choices about end of life care. ..I said Physician offices ….if there are any today that don’t belong to a hospital admin!