I just read an article that's worth reading by everyone. Titled How Doctors Die, it's ultimately about end of life care, futile care, making impossible decisions. And it evokes in me thoughts that I've had many times, in many ways.
Almost all medical professionals have seen what we call “futile care” being performed on people. ... All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
Then the article gets to the real point -- unreasonable expectations, impossible choices, insurmountable pressures:
To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.
[...]
But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.
Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar.
Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. (Emphasis mine.)
When it came time to withdraw care, I always felt the need to involve the nurses caring for the patient, to ask if any had reservations, and to discuss them. It wasn't as much ass-covering as it was acknowledgment that they'd invested more time and emotion in the patient than I had, and needed to be heard. But, yes, ass-covering was surely on my mind, too.
It shouldn't have to be. It ought to be possible, based on knowledge, compassion, data, patient wishes, and proper education of patients and potential patients, managing expectations, to provide comfort care only when it's the right thing. Not just possible: expected; part of the job; a no-brainer. As it were. Maybe, somewhere, in a society more rational than ours, it can be.
Dr. S: this is one of the best things you have written of late here. I too have seen first hand (as a wound care nurse) the horrors of the futile prolongation of death in ICU. I would leave at the end of a day,having cared for such patients, emotionally drained and incredulous that anyone in their right mind would wish that sort of death on someone they purport to love.
ReplyDeleteMy father -in-law, who I loved dearly, died this past summer in an ICU in a hospital where he was taken after a cardiac arrest (details still not completely understood, he was living at home, driving etc.one day before) When we got there (from Pittsburgh to New Jersey) he was on life support and, yes, we were hysterical. The critical care doctor did his best to calm us and give us "reasonable" options but my eyes and my brain told me that there was no hope even though my heart wanted to believe that a miracle would happen (no religious rebuttals please). His written wishes were DNR, and he died the next day after his heart stopped again. At least his family got to see him--but it wasn't really him. I will always regret not getting to say goodbye. At least he documented his wishes which to some degree, were honored. We will all die. I agree that physicians should be reimbursed for providing comprehensive family education around end-of-life care. Maybe physicians like yourself, with political interests and medical expertise should take the lead in making this every person's right under the law.
No one should have to be tortured in their last weeks of life and yet it happens in hospitals every day. We don't even let our pets suffer such an end!
DD
Excellent post on a subject that needs to receive more attention.
ReplyDeleteThe burden placed on families when there has been no plan discussed and documented is great and for all too many no choice but ask the doctors to do everything.
Perhaps more folks should see what "do everything means". A stroll through any SICU/MICU would be a shock for most. Alive but not living would make a good country song.
My family and my doctor know what I want when my time comes-
"Take thangs in my own hand"??
ReplyDeleteI take my thang in my own hand almost every day, sometimes twice.
Well at least the days Mrs. Drackman has a "Headache".
Like I said, almost every day.
OK, I know your talkin bout the S-Word, Self Inflicted Euthanasia, which for years I thought was "Youth in Asia" and I was really confused why old people were so concerned about young people in Asia.
And I actually "Pulled the Plug" on a patient as an Intern, nothin Ill-Legal, and even if it was, my Attending told me to, so I Vas Just Following Orders...
Funny thing was the damn ventilators have a osygen powered backup, and it kept ventilating and alarming louder than the million dollar slot machine at Trumps Casino...
So I did like any true Anesthesia Transitional Intern, disconnected the ET tube...
Dammit, I hate when I ramble, my real question is..
HOW DO YOU PLAN TO DO IT??
cause my Dad says the same thing, eventhough he got his Prostrate taken out and was playin Golf 3 days later.
Computer Golf, but thats all he plays.
Theres the Hemingway Lobotomy, but makes quite a mess for the family to deal with.
Even if you do it in the woods, your just gonna ruin some hikers day when he finds you a month later.
Cyanide? Pro's low LD50, Cons, that bitter almond taste for eternity.
Hanging? Even if done correctly they'll think you were some auto-ass-fix-u-ation freak..
And even if you could find an Old School Thermometer with Mercury, Elemental Mercury isn't toxic...
Frank
"HOW DO YOU PLAN TO DO IT??"
ReplyDeleteMy dentist says Nitrous Oxide, headphones on, or a good video - like in Soylent Green.
No mess.
Exit laughing!
EugeneInSanDiego