“He was perfectly fine this morning, and a bit tired this afternoon, which made sense.  I went in to check if everything was okay and found him lying in bed having trouble breathing clutching his chest.  That’s when I called 911.  Of course I want everything done that can possibly keep him alive.” These were the words and wishes of the patient’s family member.   This was a man in his tenth decade of life, unable to speak for himself, facing momentary demise, with no clarity of how involved or intense the resuscitation process should be.  A man barely alert, in pain, with few chronic medical problems, in his mid-nineties, supine in an emergency department resuscitation bed.  There was no way to determine what he really wanted for himself under such circumstances, leaving the timely decision up to family and friends, who reportedly had not discussed such possibilities in the past nor made reference to what he might have wanted based on his character in general.  End-of-life care decisions are monumental, impacting providers, patients and their families, and can be much more challenging when there are only minutes to make a potentially one and only decision to save or prolong a person’s life, a decision that quite often can result in  more harm than good.

It is striking that despite so much insight and work that has resulted in compassionate and reasonable means for clinicians to help patients and families with end-of-life decisions, far too many people and providers remain unprepared when confronted with the end game.  When there are somewhat more gradual or indolent terminal conditions, there are many well-run palliative care programs and resources that offer respectful considerations for patients and their families, addressing how to deal with both the expected and untimely complications associated with dying.  Still, the lines are blurred on how to allow and support our patients to die respectfully under their own direction and will.  One of several current and relevant editorials worth reading as more states continue to consider end-of-life legislation includes the following quote:  “There is a significant difference between PAS [physician assisted suicide] and euthanasia, and the laws have been written with great care to reflect that, and to ensure the safety of those who cannot advocate for themselves.” Low, S. (2015, August 4). End of life choices make for tough conversations. Vashon-Maury Island Beachcomber. Death with dignity and how to best assure that a person’s wishes and autonomy are protected when they are no longer able to advocate for themselves will forever be problematic, even if and when all states pass an end-of-life bill.  “At root, the debate is about what mistakes we fear most – the mistake of prolonging suffering or the mistake of shortening valued life.” Gawande, A. (2014). Being Mortal: Medicine and What Matters in the End (p. 144). New York: Henry Holt and Company.

In the emergency department there is often no time or ability to resolve such heavily weighted decisions for patients and their loved ones.  I too, just a few years ago, was in a similar circumstance, with a dying parent. Although, we had discussed dying wishes on many occasions, it was ridiculously difficult to endure.  What I continue to realize from that experience and from my practice is that providers and care team members must continue to create heartfelt dynamic methodologies that inform patients and families at all touch points of the care continuum where discussions and decisions about death become part of care plans and integrated into medical records as a quality measure.  Read The Next Era of Palliative Care, by Schenker, Y. and Arnold, R. JAMA E2, September 3, 2015.

The end game is inevitable. The experience does not have to be intolerably severe, but it should be kind.

Regards,

Lukas Kolm, MD, MPH

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Comments

Well put, Lucas!!