(Fran Moreland Johns is a freelance writer for local, national, and online publications whose focus is often on end-of-life issues. She is the author of Dying Unafraid (Synergistic Press, 1999) and of related stories published in a number of magazines and anthologies. She holds a BA in Art from Randolph-Macon Woman’s College and an MFA in Short Fiction from the University of San Francisco. She is a board member of End of Life Choices California. This article is used with permission.)
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“A performance,” the physician called it. She was referring to futile treatments of a dying patient in the Intensive Care Unit performed to make the family feel that “everything had been done.”
Well, thanks but no thanks.
Does the poor dying person get a voice here? Whose body is being bashed by chest compressions, invaded with wires and tubes, unceremoniously “treated” – just because we can? If it’s ever mine (though I’ve got every possible deed and document designed to keep me out of ICUs), I will come back to haunt everyone in that room.
What brought this up again – I’ve written about futile treatments of the dying before, and probably, sadly, will again – was an opinion piece (editor note – there is a paywall to see the opinion piece) published recently in the New York Times by Daniela J. Lamas. Lamas is a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston. The sentence that sent my blood pressure skyward was this: “Even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that is just that: a performance.”
I submit there is also a cost to the patient. Who really knows what “beyond pain” means to a human being?
It is gauche and unacceptable to mention the financial cost here, but I can’t help that either. We could pay off the national debt in a year or two by simply facing up to this issue. If physicians like Dr. Lamas don’t enjoy “performance treating” in ICUs, and (prospective) patients like yours truly Do Not Want all that heroic resurrection stuff done – why can’t we talk about it?
Granted, the job of EMTs and ICUs is to preserve life at all costs. But what if we, the reasonably healthy public, were to demand limitation of those costs? What if we were to demand – write it into advance directives, tell every friend and family member, maybe tattoo it onto our chests – that heroic life-preservation efforts be made only when reasonable life may be made possible?
Lamas was telling the story of a family unready to face the death of their loved one, despite the fact that “It was clear that there was nothing more that we could do. Except keep (the patient) alive until Monday.” That meant two full days of sedation, intubation and every conceivable medical procedure – including, hopefully, enough pain medication to avoid terrible suffering, but who knows, really? And for what? Or, more to the point, for whom? The essay was aptly titled “Who Are We Caring for in the I.C.U?”
If you Google “futile medical treatment” the list of articles and studies is impressive – plenty of medical professionals are as concerned as this lay writer – and one conclusion is stark: the waste of time, skills and money on futile treatment at life’s end is enormous. And for what?
Obviously there’s no one simple answer. Often as not, there’s one family member (or more) arguing for a loved one’s life to be extended even when everyone knows that death would be the kinder choice. To that not-dying person I would say, “Get over it.” Well, I wouldn’t say it like that; I’d say it very, very kindly because the not-dying person clearly has issues.
But we, as a society, need to get over thinking of death as the ultimate enemy and “life” as something that must be preserved even when it’s no longer living in any sense. Most of us would far prefer a peaceful death – at whatever age – to a vegetative state that is unpleasant at best and painful at worst. But only by writing those (and other!) preferences down, and talking about them out loud, will we ever diminish the sad, wasteful “performance” care of the ICU.
One healthy person at a time. Want to join this movement?
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
It is clearly written in my End of Life documents that I want to be allowed to die with no efforts at resuscitation or extending my life in any way when it is clear that those efforts will not restore me to a full and healthy life. I have talked to my daughter and my sisters about this decision and hope they will respect my wishes. I do not want to be taken to the ICU in the first place. I want to go to Hospice or be under the care of a hospice in a private setting.
I have said exactly what is in this article for 50 years of my 76 years of life. Futile procedures often are inhuman and as well costly in medical resources including doctors who need to triage and work on those that can have quality of life. The financial burden is equally severe. My wife a nurse of many years accepted Medically assisted death and stay with me in home hospice not requesting or accepting hospital or outside assistance knowing her end was happening and she said she did not want to waste medical staff or monies the health care system could apply on some one with a good chance of quality of life being extended.
Selfish family and individuals must recognize the greater needs in communities. All waste is not simply foolish it is too often criminal. Avoiding triage kills far more people and prolongs suffering and often pain and a miserable existence.
No. I’ll never accept a DNR, even if terminally ill. I want everything done, even if there’s only a 1% chance of improvement. If that offends some health care professionals, that’s their problem, not mine.
Sue, FEN’s slogan ” Your life–Your death–Your choice” applies to you Just as much as it does to people who want DNR.
Yes, Fran, sign me up for your movement! I offer this YouTube Ted Talk video about CPR and informed consent, or I should say lack of consent. CPR is the default, no matter how futile it is. The fact that it is successful in only 10% of HEALTHY PEOPLE should tell you something. Under the Epic EMR system, even if you have DNR in your advance directive, Epic defaults to full code. It is up to the patient and family to change it. Most of Medicare funding is spent at the end of life, much of it on futile treatment. CPR on people who have no chance of survival to appease family members goes against every ethical principle, including Justice, since it is a waste of precious resources. It also causes harm to the medical team, who must try to resuscitate an elderly person and listen to their ribs or sternum cracking or revive them only to be hooked up to machines with no quality of life. https://youtu.be/vXLIqPDVlac?si=FvwX0qDppPJhnAca&t=410
This seems to be pretty obvious. I think this is safe ground. But what about the millions suffering from chronic, man-made illnesses (my body was destroyed by taking the wrong antibiotic given to me), who are not dying, not terminal, but whose suffering goes on for decades unless they choose self-deliverence?
I think suicide is the real taboo. We all die, what’s controversial about that? But right now it is very difficult to get the right medicines for a peaceful death at ones choosing. It is easier to get a nuclear bomb than to find Nembutal or other such substances due to the Unites States hyseria over suicide. It’s mostly virtue signally but at a high cost for many. Tightly regulating is one thing, but humans have a right to choose what they want to do or use. I am not saying the government needs to provide it, but if a private business wants to provide it, why make it illegal? OK, regulate, license, etc. but an outright ban?
So I plan to self-teminate. Why not allow me a peacful, effective means, with my friends and family around without fear of being arrested. Why is there so little talk of suicide on a death website. I would love to grow old, but not like this. Why do we have to be terminally ill? Ironically the opposite makes more sense. If you have six months to live you dont NEED help. If you have 30 years of suffering you DO.
Joseph,
You make such good sense. I don’t want to die slowly, painfully and at very high expense. I have worked all my life to leave a financial nest egg for my daughter. I don’t want to see it destroyed by a couple of days spent torturously and futility with medical treatment that I specifically said I didn’t want. Let’s allow people to die in a way that they legally choose.