An interesting article in the WSJ on end-of-life decisions that doctors make for themselves:
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. It was diagnosed as pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient’s five-year-survival odds—from 5% to 15%—albeit with a poor quality of life.
Charlie, 68 years old, was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He focused on spending time with his family. Several months later, he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn’t spend much on him.
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In a 2003 article, Joseph J. Gallo and others looked at what physicians want when it comes to end-of-life decisions. In a survey of 765 doctors, they found that 64% had created an advanced directive—specifying what steps should and should not be taken to save their lives should they become incapacitated. That compares to only about 20% for the general public. (As one might expect, older doctors are more likely than younger doctors to have made “arrangements,” as shown in a study by Paula Lester and others.)
Why such a large gap between the decisions of doctors and patients? The case of CPR is instructive. A study by Susan Diem and others of how CPR is portrayed on TV found that it was successful in 75% of the cases and that 67% of the TV patients went home. In reality, a 2010 study of more than 95,000 cases of CPR found that only 8% of patients survived for more than one month. Of these, only about 3% could lead a mostly normal life.
The gist of the article is that doctors know that even heroic attempts to prolong life often lead to poor prognoses and diminished quality of life. They choose to go out gracefully, which is all to the good.
But then there’s this:
Physicians really try to honor their patients’ wishes, but when patients ask “What would you do?,” we often avoid answering. We don’t want to impose our views on the vulnerable.
It’s not a matter of “imposing your views”, doc. It’s about answering the question.
There was an orthopeadic surgeon that had the opportunity to work on me twice (hey, it’s a Shipyard, you’ll break the odd bit here and there, and chicks dig scars!) Not long after his last surgery (and my last, thank God) he found out he had some sort of cancer that there was not much of a chance with. He wrote himself a couple of scripts, sat down and wrote long letters to his adult kids and one to his ex-wife (who he still liked). He made allowances for his staff and his surgical nurse and for his practice then one night, he went to sleep and didn’t wake up. At first I was outraged. Then I was thoughtful. Then I agreed with him. Everyone that mattered to him was taken care of. He set his patients up with a good physician. The rest of it was up to him and God. I just hope God cut him some slack.
I agree with the doctors. I’d prefer to go with quality over quantity. Certainly age has a way of altering one’s perspectives on what’s important and what’s just nice.
The older I get, the less I am concerned with material possessions, and the more with just enjoying the simple gifts of warm sunshine, my daughter’s laughter, the soft scent of flowers and the wonderful slow burn of good bourbon.
The way I see it is this: When the pain is so great that the drugs needed to just take the edge off leave you somewhere in the twilight zone, then you’re already gone. That’s not living. It’s just hanging around after the party’s over. I’d rather kiss the girls goodnight, take my coat, and go off for the last long walk while there’s still laughter in the room, and ice clinking in someone’s glass.
Tim, you make it sound like the last scene in the story of Humphrey Bogart’s life, shrugging on the overcoat, squaring away the snap brim of the Fedora, giving a quick smile at the noises behind you, and out the door you go.
…Not a bad way to wind things up…
Agree 100% with you Tim. Quality over quantity the One Big Time for me!
Outstanding comments AW1! Both my Grandmother and my Dad left the world while in that painkiller twilight zone of which you speak. And you’re right, in human terms they were already gone. Death with dignity has to count for something.
Respectfully disagree, skipper.
We’ve been taught to just ask the next of kin, “What would you like us to do? (and here are the options…)”
If they’ve got the gumption to ask what would I do, I’ve responded, “Depends!” (Short answer) I’ve then gone on and said (at the time), “Well, I’m married, with kids, and in view of my responsibilities, if I had it [pancreatic Ca], I’d fight as long as I could.”
If they drop the other shoe, and say, “But what if you weren’t?”, I’d then drop my other shoe and respond, “I’d go fishing…”
And if we’ve gotten this far, I’ll continue and say, “It makes a difference whether you’re a Christian, because to us,’To live is Christ, and to die is gain’” (Paul to the Phillipians)
But until asked, most people would consider that as “shoving religion down my throat” – so I hold off – count my as heroism-challenged if you like.
But interestingly, the person in my surgical class who ALWAYS fought tooth and nail to resuscitate even the most hopeless patients was the atheist.
He freely admitted that since, “this life is all there is, there’s no point to quitting on them if there’s any chance AT ALL!”
Mi dos pesos…
Don’t know how necessary this is for this crowd, but a bit of balance on those CPR numbers seems called for. Medical pros that I know will “default” to CPR at the drop of a hat. Logically, they know the CPR recipient is already gone in many cases, but still feel compelled, for various reasons, to go through the motions. To their credit, those “motions” are physically exhausting and often quite disgusting with regard to how recently deceased bodies tend to behave.
Saw this first hand many years ago with my sister, a nurse that mostly worked ICU/CCU units. She had retired and was sitting kids at her house for a several professional couples. I visited often (still in high school) and was asked to check on a little guy that was sleeping longer than usual. He looked to be sleeping peacefully until I touched him, not only cold but already rigid. I picked him up and it was obvious there was no life left in that little body. After calling out for my sister, she snatched him from my arms, layed him on a kitchen counter and started infant CPR. I stood there looking stupid for some time until she hollared at me to call 911. As I talked to the operator I watched her keep at it, spitting out after each breath the refuse from his body, until the firefighters arrived and one of them took over.
How long they continued I no longer recall, but at the time I was shocked by the “insanity” of these medical professionals vainly working on a clearly dead body – a cold, hard, dead body. That judgement of insanity was of course just naive ignorance, and I later married a nurse (ER nurse) that would tell me similar stories. As explained to me, part of it is trained instinct, but a lot of it is sheer sense of duty and hope that this time it will be the miracle that justified all the other failed attempts.
So when we read that only 8% of CPR recipients live past a month, recall that its not because CPR sucks or the practitioners are poor but because maybe only 10% were actually even alive when CPR was started. The rest of the time it was an exhausted medical professional’s final roll of the dice on behalf of someone elses mother, father, brother, sister, son, or daughter.
Your last paragraph… was very humane. It adds a humanity to the medical profession… the last sentence. Thank you for writing that.
I agree with Tim’s comment on quality over quantity of life. On CPR, when I took a class recently, the instructor prepared us for a bad outcome, saying, as MadMarine did, that if someone’s in bad enough shape that you have to do CPR, they’re already dead and that you should feel pretty lucky if they wake up due to your efforts. “Final roll of the dice” indeed.
It’s a tough job at times, but duty does call. I thought some of the stuff professionals do was baffling until I got into the ranks of the learned professions myself. I wouldn’t call what the Med types do insanity, just the call of the profession to do what you can for your client until it’s clear there is nothing you can do. Making that final call is one of the hardest you can make.
@Dave Harvey – I sent you a box of books today. Forgot to include the letter (sat staring at the box knowing I’d forgotten something but couldn’t remember what it was so sealed the box, and remembered on the way to mail it). No need to send me a patch. If those were not the sort of books you had in mind, please advise and I’ll keep hunting.
You contact me at mrgcoengr at hotmail.
I was surprised we have to do a customs declaration for stuff going to an APO these days. The FedGov has gone insane.
I believe its all centers around open, honest family discussions and communications. My father kept me informed for over 30 years on how he wanted to spend his retirement and what “his wishes” were should he become incapacitated or unable to communicate. I had medical power of attorney to speak on his behalf. When the time came, and we all knew the end was inevitable, I was the one requesting the ICU staff to turn off the machines. The medical staff was great and fully supportive of his wishes. My Father died with the dignity he earned, not after an extended period of suffering every indignity encountered in an ICU.
MikeyB
Every instance is different. When the doc told me I had testicular cancer in 92, I threw the BS flag and said I ain’t going out like that. I won. My Pa, LTC D, issued each of his offspring a copy of his “no heroic measures, do not resuscitate” order at age 75. He knew his race was run, he’d won his wars, his children were provided for, and then, as Bill K. related, he went fishing. He earned it.
In my experience, many times these decisions are made not by the patients themselves, but by their children and family members. Most people have not discussed their end of life decisions with their family. As a result, patients end up demented, sick, or otherwise unable to express their desires and it’s too late. In my opinion, much unnecessary end of life care is the result of fear and guilt on behalf of the family. They are fearful because they do not know what to expect or how to proceed, which makes them feel guilty for the eventual outcomes. The daughter thinks that if she withdraws the ventilator then she is the one killing her mother. The reality is that she is likely prolonging her mothers suffering.
As a cancer surgeon I have seen death come in many forms. I have seen young lives lost by violence and accidents. Yet, some of the saddest deaths to me are those who die alone in an ICU. Unfortunately all of us will die, but few get to choose the circumstances of their death. Given the opportunity, the most dignified death in my experience is to die at home in the company of your loved ones. I hope I can be so lucky when the day arrives. Hospice is a wonderful thing and totally underutilized. There is no shame in choosing quality over quantity, it certainly does not mean the fight is over or that the patient has given up.
Hospice care is a blessing. Used that for the final days of my mother’s alzheimers decline. She passed away in her daughter’s home surrounded by her family in peace and silence. The best possible ending after such a vile illness.
I talked some of this over and this strikes me as my way.
“I am just going outside and may be some time”.
A very difficult and complex issue with many facets. While we all will die, as will our loved ones, how when and by what extraordinary methods will differ.
Having faced death often in my twenties, having been technically dead for some minutes in my forties, and having been given less than two years to live almost ten years ago, I have some perspective:
My father was admitted to Mass General for throat cancer. I was in the room when he told his surgeons that if they cut him open and found the situation was beyond control and that he would no longer be able to walk his dogs that they should just close him up and let him go home. He had a living will and power of attorney in place.
When he came out of surgery, the Drs had taken his throat and his stomach. He was on a ventilator and a feeding tube, never mind being heavily medicated with morphine (they had effectively put him in a medical coma.)
My mother had a heart attack right in the hospital and this mess went on for several days.
I met up with a couple of the Drs in the elevator and told them that my father was gone; all they were doing now was taking years off my mother’s life. That wasn’t good enough. We had to threaten legal action if they did not remove the feeding tube and the ventilator.
It is my opinion that the Drs didn’t want the death on the hospital stats.
If they’re not answering the ‘what would you do’ question, there is a reason. Families of people dying are tough. Some are steeped in reality and some are in denial. That’s a tight rope.
My father in law passed away 18 months ago. He was 84, had advanced Parkinson’s, was crippled from bad hips, and was in the advanced stages of renal failure. He was a devout Christian man. He was in and out of hospitals for over two months before he died. In his last stint in ICU, my husband and I counseled him on letting go. He insisted on dialysis, prodded by his other son who was in complete denial as to how the body really does shut down over time. The docs thought my husband and I had demanded dialysis and the cardio guy (who I will never forget and admire) was a bit nasty to my husband and I that we would do something so awful to ‘the old guy’. We quickly set him straight and he was completely horrified and appalled that Pop was going to fight death tooth and nail, no matter the potential crap quality of life. In the end, when things were going poorly, Pop called for me and asked me to help him die. He asked me how to make it happen. There he lay, on death’s door, I advised him on what to do… and to this day my brother in law still hates me for it. I can tell. I have a clear conscience.
Doctors deal with that EVERY day.
And then this past summer, I took care of Pop’s best friend, who had no family. At one point, after the 2nd month, in ICU again… a mess… again, a nurse and I were talking about how the family should just let him go. Two days later he was a different person and now he’s in NJ with a pretty good quality of life. I told my husband it was a good thing I wasn’t the health care surrogate. Joe would be dead.
So, it’s not cut and dry, and death is tough. I know what I want for me. I’m with the docs statistically. I’ll grab a handful of loratab and move on. But everyone is different and it’s about communication. Some people can’t deal. It’s not so obvious who they are… so I think the Docs are best playing it safe.
That makes nothing but sense.
None of are going Out Alive. http://www.youtube.com/watch?v=jdQI6P2a8nE
Some of you may enjoy this great new talent. Like a 20 yr old Stevie Ray.. Check out the youtubes.
None of us are..
My father passed away about 4&1/2 years ago just a few weeks shy of 74. He had his first stroke when he was 60. Subsequent strokes weakened him, then he needed heart surgery. His last 2-3 years were difficult. Pain kept him from sleeping, he couldn’t drive, he was tired all the time, he wore a catheter and urine bag. He suffered from depression. You could see he felt he was a burden on us and he clearly felt he’d lost his dignity and/or what made him a man. Of course that wasn’t the case but he felt that way. His last two years were constantly in and out of hospitals with various infections. Skin cancer eventually got him. First they took tissue off his ear. Then they amputated his ear. Chemo, radiation, etc. The cancer kept coming back then got into his brain. You could see the confusion, frustration and fear as he realized he didn’t understand his own vocabulary.
I don’t want to go through that but that’s a lot easier to say at 46 than staring it in the face.
Death is such an intimate subject. Especially when your very own is imminent. Intimacy fosters honesty.
This is so relevant to me. Good discussion here, with the usual high signal / noise ratio.
My wife fell recently and broke her pelvis. Complications have led to severe, unending, breakthrough pain. I’m caring for her at home. My blog reading and posting here, albeit brief, is a blessing these days. Perspective.
I’m even nodding my head, and saying, “That flit is making a cogent argument here.” I’d even buy Flit a beer at an (unlikely) Lex meet-up. Guess I’d better chip in and buy Lex a Guinness. Thanks everyone, and esp. to our esteemed host.
I would buy Flit a beer anytime..although we are from different planets.. Prayers for your wife..
Agreed. Prayers for your wife, and for you, NaCly. And I’ll buy Flit a beer too.
I’m surprised someone hasn’t made the playful snarkish remark that Flit wasn’t resucitated in his 40s. Those of us who have met him face to face know he’s OK.
My father died at the age of 60 of Hodgkins Lymphoma. He was diagnosed at 49 and I watched him fight it and decline over the next 11 years. When he did go, he linger for months. He declined rapidly then went in December of 1990. Since he was a Christian, I’ll see him later.
Dog: Prayers offered up for your wife and you. Especially you. Sometimes the caregivers are forgotten and they need the prayers just as much – if not moreso.
Am truly sorry to hear the news, NCly Dog. Godspeed in your wife’s recovery. My thoughts and prayers are with you both..
Sir,
You and your family have my utmost sympathy and sorrow for your pain. In my experience it is the holding on that is most painful.
Dwas, AW1 Tim, QM, Kris in NE, VX, Curtis, Flit and his beer, and the rest of this august group,
Thank you. Good news. My wife has turned a corner and the constant breakthrough pain is an occasional visitor. Thank you for your successful prayers and support. She has a long road in front of her, which in our case is better than a short path to the meadow at the end.
Good news NaCly -very best wishes for a sort and speedy recovery for your wife.
Or sHort.
So glad for you both..you are in our thoughts, and continue in our prayers..
NCD – Godspeed for your wife. My prayers are with her and with you.
The last day of my second rotation in Iraq, bags packed and ready for the C-130 in the morning, came a knock on my hooch at midnight. My father had a stroke.
He hated nursing homes. He told me that he would rather be covered in his own sh*t in a corner of his own house than in a nursing home. All the way back I was figuring out different ways to take care of him. Could the Navy give me a compassionate reassignment to the nearby base? I was willing to leave the Navy, if needed, to take care of him.
The stroke was massive. There was some confusion, but there was no pain. He was gone before I got back. His father died quickly of a heart attack. If only I’m as lucky as both of them in the end.
A quick end is a blessing from God.
My father died of cancer in 1995. The only option available for him was radiation to target the secondary tumors; the primary cancer (kidney) was incurable. He pursued the radiation treatments to relieve pain. We found that the radiologists were far more willing to be honest about his prognosis than the oncologist. When my beloved dad asked his radiologist if they could save his life or give him a good quality of life – the radiologist said no.
My dad stopped all treatments after that; he met with the oncologist and asked the same question, telling her what the radiologist said. She agreed and they set about making the final plans. He was told on January 2 1995 that he had less than 30 days left. He died on January 26 under the care of hospice – at home, in his own bed, surrounded by his family. It was what he wanted and it was dignified.
One of my dearest friends is a Palliative Care Nurse and she echoes what the article said. Oncologists won’t answer the direct question of “what would you do”, whether it comes from the patient or the family. They will throw everything at the patient, leaving them grossly ill for their remaining days.
As patients or families – each of us needs to have the plan written down, clearly and precisely. There can’t be any questions when that time comes for our loved ones or ourselves.
I’m always torn on this issue. I will never judge someone else for their choice, because it’s theirs. But I don’t think there’s a single “right answer”. My own dad beat the odds, and they were pretty steep. About 5 years ago, he was back at his childhood home taking care of his own dying mother. He was out for his thrice weekly jog of 2.5mi that he’s done every day since before I was born. He was talking with the neighbor during his cooldown walk when he collapsed. It was atrial fibrillation. The neighbor called 911, but a ICU nurse happened to be driving by when he fell. She turned around, called her dad (a State trooper, because she knew they had paddles in their cars) and started CPR. My dad is alive today at 72 years old and in extremely good health with a pacemaker. His biggest complaint is that he never got back to his old jogging times. Had it not been for that ICU nurse (and CPR) my dad would not be alive today.
Mike, atrial fibrillation is a cardiac arrythmia (abnormal heart rhythm) and is not a terminal or progressive disease leading to death. It is the kind of diagnosis that CPR and ICUs are intended for.
Had this discussion not 3 days ago with the wife of an old friend who passed on Friday. He was on loads of meds (I returned 3 bags full of it to the pharmacy yesterday for her). Had she been given a holistic perspective from the hospital, rather than the `this is how we’re going to keep him going`, she would have taken him back home. This holistic appraisal, as I have chosen to call it, needs to be empasised much more than what she got, which was the techno/medical. Wise, empathetic, eye to eye contact from the medical professional who knows the exact score, without fear of litigation is a vital ingredient. I’m not sure this is a widely used skill set.