Doctors make different end of life choices than most people.
42 Replies to “How doctors die.”
For the curious ones, I’m a American veterinarian, from the deep south, living in London, Ontario for over 14 years now.
I’m also the resident Conservative, lesbian contributor here at SDA. I own a Smart Car (for an advertising toy) and a hybrid Highlander SUV (when bought used, at half the price,they make financial sense) because I don’t like sending money to the middle east for fuel. My next vehicle will be a Volkswagon Turbo-Diesel.
I’m into conservation and decreasing pollution and I know that AGW is a scheme to transfer wealth, nothing more. I’m more of waste not, want not kinda girl.
Plus, I believe that every dollar you save is a dollar you can spend on something fun.
At the end of my life, I’ll not be kept alive by machines on the taxpayer’s teat. My legal paperwork is all in order.
As I have often stated,we do procedures and such to keep a patient “alive” long after it is feasible. We treat our pets with more respect and dignity then we do our loved ones.
Everyone should read this article.
My Stage 3C ovarian cancer mother, at the urging of a particularly pushy and sentimental relative, agreed to aggressive treatment that probably gave her a couple of extra months of life.
Months spent cursing with shame at the ostomy bag she had to wear (I can’t tell you how much she suffered with it.) Not to mention all the other indignities and other stresses — not the least of which was feeling obliged to put on a brave face for my aunt, who’d mistaken real life for an inspirational TV movie of the week, in which the rest of us were involuntary stars.
She’d actually been as resigned as I suppose one can be to her fate after the initial diagnosis. That was until my relatives started uttering movie dialogue instead of facing reality.
And don’t forget: all that “treatment” was “free,” right? “So why not use it?”!
We all have a personal story
Mine is that after my husband had a massive stroke, which resulted in a fall that broke 3 vertebrae in his neck, the doctors examined him and told us that all that was keeping him alive was the machine. If he did live, he would be permanently disabled, possibly a vegetable. The next question they ask, did he ever speak to you about his wishes. He did so there was no doubt.
It isn’t just advisable but imperative I believe to see a lawyer now, if you haven’t already. This is especially so if there are no adult children, and definitely if there are is more than one adult children.
Be prepared: I’ve heard stories of families not speaking at the funeral home. Take the decision out of their hands not just for your sake, but for their sake.
Kyra:
Welcome and thanks for passing this on. Excellent article.
Look forward to seeing more of what you find interesting in the future.
Thank you, Kyla.
I and my husband have paid a substantial legal fee, to have this all updated, with many specifics should paramedics have started treatment before that paperwork gets to the scene.
Funnily enough, I have thought about tatooing the demand, (or wearing a medical bracelet), for no measures beyond keeping any pain levels corrected.
I was a registered nurse. I know what happens and once those tubes and treatments are initated; it makes it harder for family and docs to stop.
I am thanking you, because each and every time I read an article like this, it still sits as ok with me.
I want it to stay good with those who will have to make that call. So far; so good. And I have sent this piece off to them to keep it fresh for them. Thanks.
Kyla, thank you for the article and your note.
A relative of mine died in the ICU, after days of sheer terror on his part. They had to tie his hands down because he was trying to fight off the nurses. The person “in charge” of his care was not really capable of making the hard headed decisions that needed to be made.
I’ve lately thought of this relative’s struggles: he was very ill—and in denial—and his vital systems were failing, so being in the hospital seemed reasonable. Would it have helped to have had him sedated? Breathing was hard for him: he probably felt like he was suffocating. Having his hands tied down must have made him feel claustrophobic and entirely helpless. Does anyone here know how one can alleviate the terror factor in a situation like this?
(Before his life support was stopped, he was given a “memory erasing” drug: the doctors said it would take away his memory of the suffering he’d undergone—or words to that effect—and erase the obvious fear he’d endured. I hope so! About an hour later, we asked the doctors if the process could be speeded up. They seemed relieved that we’d asked. “Yes,” they said. My relative died about an hour later.)
Kyla, I haven’t yet written my instructions for what I’d like to happen in a similar situation. (For one thing, I believe I won’t be in denial: so many wasted opportunities when that’s the case!) Thanks for the nudge.
And if anyone can answer some of my questions, I’d appreciate it.
Good old-fashioned common sense isn’t very common anymore. There have been several TV newsstories in recent years about severly handicapped people (like with MS) who demand their right to die – by a doctor’s hand. They have a right to die, but not the right to ask one who has pledged himself to the Hippocratic oath to do no harm, to off them. I’ve always been impressed with my late father-in-law’s hard life on a Prairies farm, then long, happy retirement on the West Coast. He took up golf before retiring at age 65. He then golfed and curled just about every day (often both in one day) until his failing eyesight made it impossible, even after a winter or two with his curling skip taping a flashlight to his broom as a target for Dad’s rock. At age 96, however, mini-strokes started taking their toll. They sold their house and moved into an old-age facility, Dad in a nursing unit attached. He never complained, but when he heard how much it cost to stay in that facility (he had too much money saved for his retirement, so the government made sure he paid his full share while subsidizing with taxpayers’ money those who did not save), why, he just simply passed away. He’d had a good long life. I’m convinced he just stopped eating. He wouldn’t think of asking anybody to “euthanize” him. Hell, he’d probably never heard such a word before. He knew enough, however, that if you did not eat or drink, you’d die. And in a fairly short period of time. With dignity. I would hope I could have the courage and common sense to do the same, and pass away in silent dignity. At my own doing.
lookout: They can always use sedation if a person is in terror. The reason most anesthetic drugs are chosen are for their amnestic qualities, literally means causing amnesia.
I let them radiate my Dad’s brain when he had Stage 4 cancer. I could’ve stopped it had I put my foot down.
He died barely able to think or speak.
I will never forgive myself for not kidnapping him from that hospital and taking him sailing.
Thanks for posting this, Kyla. I’ve forwarded it to my family members to read, along with an advance medical directive that I’d been putting off introducing. It’s never easy to have these conversations, but waiting till there’s an emergency is far worse…
Mom died an undignified cancer death and it marked the beginning of the end of our family. No will, no pre-plans, five fighting siblings, a detached father and a life time of family secrets slowly creeping out from the rug they’d been swept under. Not fun being a grown up. I pray my son will not have to go through this when I’m gone. At least there will be no siblings to fight with.
Discussion with regard to dignity at the end of life
is something we urgently need. We also need to realize that it’s a long way from futile car to new technology. Eight years ago I couldn’t even eat on my own and truly wanted to end things. Then along came a miracle and after very serious brain surgery I now have a wonderful life.
What I now see as important is the need to really discuss these difficult issues in a mature way and perhaps better understand ALL of the ramifications of choices and dignity at the end of life.
We all will get to the end some day and the discussion would be a lot more realistic if we had it before we got closer to the end.
I have told my wife that i don’t want any treatment for anything …as i beleive that if i go to a doctor other than little thing’s liek an in grown toenail and such ..or to get stitches or a cast typeo f thing’s ..i don’t want any treatment…i just want to live and die. not on a machine or listen to my family cry at my bedside ..i just want to die ..and in fact i want to die in my home not in a hospital.
I could go on about this all day. But to be brief, I’ve noticed in my experience as a GP, clinical assistant in the ICU and anesthesiologist in rural and urban settings, a few generalities.
First, those who’ve lived the rural/agricultural lifestyle, seen the cycle of life including death and dying, are far better able to cope realistically with terminal illness than their urban counterparts.
Second, there is a huge cultural element with members of some cultures able to deal with the issues and members of other cultures in utter and complete denial, wholly unrealistic and extremely belligerent toward medical staff and caregivers.
Third, it is typically those who’ve done the least to look after their own health in life (the morbidly obese, heavy smokers, heavy drinkers) and their relatives who want to make up for lost time when the chickens come home to roost, with doing “everything” to “save” them.
Finally, I don’t think Hollywood does anyone any favors — miracle cures and fairy tale outcomes served up in one hour or less. Life is rather more prosaic. And the major drivers for futile care in my experience have invariably been the family members, only rarely the health professionals who’ve seen it all before.
Also my dad died exactly how i want to die ..he had just eaten dinner and was sittine relaxed in his reclining chair after eating a nice portion of some sort of desert he should not have had (diabetic) but he did anyway …and he had a massive heart attack and according to the doctor died instantly almost with out a flinch…his wife did not know he was dead for like 5 minutes when she came into the living room after cleaning up the kitchen and said something to him he did not respond and then she noticed ..called 911 and the rest is history. god rest his soul !! love you dad (even after all fo the terrible thing’s you put me through ) !! 😉
Kyla – I don’t know why the full disclosure on things that have nothing whatsoever to do with the subject; but to each his own. One must be very careful when they go and sign “do not resuscitate”. I had a double bypass about 26 years ago and then about 8 years ago I had stents put in. While doing so, I lost consciousness. I woke up to a nurse or technician shaking me and calling my name. I apologized and said I must have passed out. She quickly stated my heart had stopped, and they had to do something (a jolt?) to bring me back. Would they have been able to do it if I had this proviso attached to my chart? At any rate, I know what people are meaning here, and I think it important that patients be put out of excruciating pain, but to the point of death? I don’t know, there have been “hopeless cases” that are still with us.
thnx Kyla . . . welcom to Kateland. You’ll find some common sense here.
timely information.
I am going to make sure I have some kind of pill or whatever so I decide how my end happens
Don’t need no steenkin’ badge carrying govmint type interfering in my business.
larben: RE full disclosure: every time I post something, there are a bunch of ‘who is Kyla’ comments. Just thought I’d get that out of the way.
A great friend of mine spent over 4 months in ICU, liver, kidney, and lung failure. They called his kids in twice to tell them he should die. Problem was, he was conscious, even though he couldn’t speak.
Long story short, his kidneys and lungs started working again and his liver is regenerating. He stopped by to see me at work the other day.
I have 2 people on my paperwork for pulling the plug. One has the authority to do so, and the other has to make sure I’m not just asleep on the couch.
The whole point of that article is that people who know medicine the best, often themselves choose not to go for the heroic measures.
Good point Kyla; I always get this weird feeling when a see doctor’s name in the obits. I kind of think, gosh he’s a doctor who has all the access to hospitals and treatments and such, and he still died! I know I’m being ridiculous, but my heart sinks just a little.
Thanks Kayla, DrD and larben.
This was interesting and poignant enough that I called my wife in to my office and read every comment to her.
Paul in Calgary @7.39
What on earth are you saying?
Of course, have treatment and do everything you can to live out your full span.
This advice is for people for whom everything has been done and they are terminal.
It is to prevent extra – ordinary procedures being done to elderly people (mainly) to prolong a life that has lived out its course.
This also can apply to younger people, of course.
There are walking, talking miracles, Paul, so don’t be too hasty with your decision.
Kyla said: “My next vehicle will be a Volkswagon Turbo-Diesel.”
That’s a girl! Go for the Snow Performance water injection, it’s be -awesome-! Mega power boost AND better fuel mileage, win-win for team diesel. Sorry for making fun of your Smarty so much, but I just can’t help myself. They’re so silly.
As to the article here, this is 100% accurate and authentic. It is the Real Deal, my friends. I’m just a lowly PT, but I’m going to be NO CODE big time when its my turn. Struggle through the nightmare of stroke “treatment”? Suffer the never ending cutting, stabbing, incontinence, lying there like a slug waiting for the bedsores or the flu to carry me off? No f-ing way, not if I have anything to say about it.
Anybody who has worked in a hospital more than a couple of days has stories. You do not want to be the guy that the story is about.
So TELL YOUR FAMILY how its going to be. Do not let Aunt Mabel or Cousin Bob get in there and twist your next of kin into “doing everything” while you’re passed out.
You do not want them to do everything. Because they will. And it will kind of work. For a really long time.
Glad that you’re still among us larben! You’re a living example of what could go wrong when a do not resuscitate order is in place.
Personally, I think the push for assisted suicide and euthanasia has more to do with economics – profitable tax paying “units” versus unprofitable “units” who no longer pay taxes and are collecting CPP or disability due to longevity.
The unprofitable “units” take up beds and consume health-care as well as other resources that could be better utilized, with a higher probability of a successful outcome, by a younger more likely to be profitable for longer “unit”.
People need to be careful when making these types of choices, not only DNR’s but organ donation as well. There are a plethora of examples of persons who have been deemed/pronounced brain dead who in fact were anything but.
What is important is that you have someone you trust that you know will have your back when the time comes for those types of decisions, or put your wishes in writing but even then it’s impossible to prepare for every conceivable scenario.
My wife, who has been an active RN for 40 years, says that many, many families insist on “heroic” measures for relatives, and-damn-the-highly-invasive-procedures, pain-to-the-patient-or-the-exorbitant-expense, because relatives feel ashamed about how they treated them in life and are embarrassed, so this is their way of making amends.
Vignette: Over a quarter century ago at old Louisville General Hosp my wife was discussing the merits of doing 3 more different tests on a patient whose previous 7 had all proved negative. All there were highly invasive and extremely painful as well as extremely costly. As all the previous ones had all agreed my wife opined that these tests were not likely to differ and on the basis of both pain to the patient and cost alone they shouldn’t be done. “Why worry about the cost,” the other college-educated RN said, “the government’s paying for it all.” My wife went Able Sugar. “Who do you think the government IS?” she replied, “those are MY tax dollars being frittered away–yours too.” Moral? All too many even college educated people seem to think “government money” is seemingly beamed in from the planet Mongo by Ming the Merciless’ green-backs ray. They, unbelievable as it may seem, make NO connection whatsoever with the tax dollars taken out of their pay-check and those spent by the Federal government..
We’ve watched various family members as they – to quote my late aunt – ‘shuffle off this mortal coil’. We’ve always tried to do what’s best for them. Can’t say the same for other family members, but that’s another story.
My mother lived near us for many years, moving here after Dad died. For the first few years, she was in serious mourning; had anything medical occurred then, she would have been firmly in the DNR camp. However, as the years wore on, she regained her enthusiasm for life (it helped that she had a lot of relatives who were 90-somethings before their time came up, so genetics were agin her dying young). She had a lot of great years, including grandchildren’s weddings. I asked about those, and her comment was to the effect of ‘I always thought, if I were to attend a grandchld’s wedding, that they would be too young to get married’. Said grandchildren were late 20’s when finally happened. Before that, there were a whole bunch of graduations and generally good celebrations.
Towards the end, Mum finally decided we needed to formalize things so, along with updating her will, she decided to give me the power-of-attorney and sign a ‘living will’ directive. Took her down to the lawyer, helped where could, and generally left Mum to it. When the day of signing came, I drove her back to the lawyer and waited for her to sign the paper. Lawyer came out somewhat perturbed: Mum (okay, her hearing wasn’t the greatest and she was legally blind) couldn’t understand something and was becoming agitated. Would I help. Okay. Went in and looked at the document in question: it was the living will directive. So I said to Mum: “This means I get to decide when to pull the plug.” Lawyer gasped and his young assistant was aghast. Mum just smiled, said “Right, dear”, and signed.
Fortunately, didn’t have to make that decision, but did use the power to ensure – to the best of my ability and knowledge – the last days as she moved away for us were as comfortable as possible. Will never know if it worked (oxygen and fluids for hydration were my requirement), but I tried.
Phantom: No code under any circumstances?
A man I had worked with who had had to take an early retirement (as a principal)which kept him house-bound went into heart arrest on a treadmill, and was resuscitated.
The close encounter with death shocked him out of his depression and he began a walking regime, lived healthier and he and his wife had a further 30 or so years of happiness. He died a few months ago during or after an operation at age 86.
I think one should make sure each case is well thought out.
My mother had a type of multiple system atrophy, known as striatonigral degeneration, where dopamine producing cell structures deteriorate and die in the brain.
Way back in ’98 while PM Paul Martin was taking a hack saw to the health transfers, my mother was left out of the loop as the diagnostic MRI she needed wasn’t available for nine months.
I begged favours from a radiologist to circumvent the ‘official system’ such as it was then, because it plainly was ignoring symptoms everyone could see.
After sending a fax to ‘interested parties’ running the health care system, suggesting ‘supervised neglect’ I promptly delivered my mother to the UBC Health Sciences for a proper diagnosis, which they originally wanted to stall for 12 months.
The head nurse at the time realized that the ‘system’ had let my mother go for far too long and that they would find a bed for her.
A 3 week stay ensued with a battery of tests, after which palliative care ensued. 18 months later she passed.
I don’t need ‘medical heroics’ either just a system that deals with obvious stuff instead of being bloody minded by trying to ignore it.
Cheers
Hans Rupprecht, Commander in Chief
1st Saint Nicolaas Army
Army Group “True North”
gellen said: “Phantom: No code under any circumstances?”
-No.- Obviously everyone has a different situation, you have to use your head. Figure out what you want, and then make sure everybody knows what it is.
My old man’s 85, he’s healthy as a horse and has let us all know he prefers to be taken out of the house feet first, thank you. No argument from me.
Always err on the side of life.
Interesting article although I suspect it’s written from more of a US viewpoint as long ICU stays in Canada just don’t happen regardless of what clueless relatives have to say. I disagree with him about CPR as the only ribs I’ve broken on people when I’ve done CPR are in the very elderly (where CPR shouldn’t have been done in the first place) and the survival rates at the arrests I was at as an intern were far higher than given in the article. My record was 3 hours of CPR on a hypothermic alcoholic who recovered to the extent he could go out and drink again.
My personal view is that I don’t think that death is natural and at some point it will be a thing of the past. That said, I’ve had only a couple of people ask me about getting their bodies frozen at the moment of death although I’m not sure if the cryonics folks current processing will create corpsicles that are revivable in the future.
Fortunately, a lot of people now have advance directives which they’ve communicated to relatives and it makes it a lot easier when their condition deteriorates. Whether people want to get aggressive in treating what seems like an obviously fatal illness is a personal decision. I’ve seen lots of people succumb to cancer and our treatment of cancer will probably be seen as the equivalent of casting out demons by trephaning by future generations. Still, there are people who are determined to pursue aggressive treatment and they’ve survived when my prediction was that they wouldn’t.
Often, the survivors are the ones who we’ve given up on and withdrawn medical treatment. Not that long ago I admitted a patient with CHF and anasarca who also had severe sleep apnea. The internist who saw him just recommended palliative BiPap which he was given. With this treatment he began to lose fluid and went home much improved. I’ve also had patients discharged from hospice for refusal to die.
The worst cases are the individuals with severe dementia whose body seems to function flawlessly. I hope I’ll have the presence of mind to blow my brains out before I get to that state.
A lot of time what keeps people from dying when they should is guilt of relatives. Children who’ve had nothing to do with their parents for years suddenly want “everything done” when their parent is terminally ill. If there are no advance directives, this can be a very messy situation.
Most physicians I know believe in very aggressive treatment for conditions that are treatable and alleviation of discomfort for terminal conditions. Having seen what a lot of people go through with chemotherapy for cancer, it’s not a route that I would be interested in taking. Physicians have their own way of dealing with terminal conditions: ondansetron + a fatal dose of morphine or a bullet to the brain if they own firearms. (the former is less messy than the latter).
Ultimately, treatment should be individualized to the patient and what one person views as unacceptably invasive someone else will have no problems with. We’re at a very primitive stage of medicine now with our replacements for various organs being massive external devices and these will shrink down in size over the next few decades (assuming we don’t have a global financial crash). Then, the primary determinant of whether someone should be kept alive “artificially” will be if their brain can be adequately repaired.
The smell of fresh bread, a really heavy rain, fresh cut spruce. I’d miss those if I died……
Great link, Kyla. I visit my aunt and several friends in a nursing home, and I am printing this article for the nurses there to read.
While I agree that in some cases family guilt, as mentioned by loki and others, can be a factor in making an end of life decision for a loved one, I think it is a serious mistake to assume that this is the only reason for delays.
Many family members sincerely want to ensure that there is in fact nothing further that can be done that they know the loved one would want to be done if they could speak for themselves.
Also, one needs to consider the grieving process that occurs in those who are losing a loved one. It takes time to come to the acceptance stage and even more time if several family members are involved as each passes through the grieving stages at their own pace.
Facing death is an individually complex spiritual and otherwise journey for all involved. It is said that death; especially suicide, is associated with at least some degree of guilt. That said, it’s simply too simplistic to state that it’s all about family member’s attempts at alleviating guilt or making amends at the end.
Doctors may wish for an non-interference in their time of dying, but when it comes to their own children, they make the same emotional decisions as the rest of us.
From my point of view, allow God to decide. From yours maybe, let Nature take its course.
If a patient wants the help, fine. If not, than honor their wishes. I am of course completely against assisted suicide or “helping” a patient along. To me thats murder. When you know your numbers up with a bad, no curable disease. Ease the Persons passage with pain drugs, with family care. Send them home to die instead of an institution. If no family than a good Hospice. Why should they go through torturers even the Inquisition, or medieval princes couldest conceive of. Always have hope though.
My mother died 3 months ago. At 92 she came from an era where basic decisions were made and lived by. She did not want to be maintained in a hospital and we did all the paperwork that ensured that would not be the case.
This planning did not change the reality of her passing. It was not a docotr who told her that she would not be getting better but my sister and I. With a clinching of her jaw and a ‘I have had a good life’ the ambulance took her to the hospice room. Death is not a comfortable experience for many. My mother was of pioneer stock and she did not let go easily. As much as we encouraged her to take the rest she deserved she fought for life for 3 days. During that time she had no food and the pain killer (morphine) was dripped into her body to kill her. Little of that time appeared to have any awareness to her.
My mother did not die at home as she wished and that will haunt me until the day I die. My sisters and I were intimidated by her need for pain medication and our inability to provide that outside the hospice experience. Near the end she told me that I was a ‘good father’. If that was true then why couldn’t have I done a better job in helping her pass?
Interesting how the ‘differently oriented’ are so concerned about sex and death.
More of a leftist trait, with all the emphasis on pleasures of the flesh. With death kind of being the ultimate orgasm…
Just a pattern I’ve noticed…
As a physician who works both in the ER and ICU, I have to agree with much of what Loki said.
I can count on my hands the people I have been able to bring back with absent vital signs, however there was always something about their case that provided some hope that therapy was going to work. There has been no time where I thought it was hopeless where anyone survived (but we still tried because the family wanted us to).
Make sure you discuss with people around you your end of life wishes. That way they will be recognized.
@ Phantom: We might actually work together, do you do PT in HGH or SJH?
A friend if mine who is a funeral director told me that many doctors have treated him poorly over the years. Signing the death certificate and releasing the body to him was “defeat” he guessed. Could be a god complex on part of the physician, I don’t know.
I’m more concerned with shyster funeral directors guilting families into buying top of the line caskets to show how they really loved grandma than a doctor who’s tried everything he could.
ct @ 10.41 – so sorry to hear your story. It’s easier said than done, but please forgive yourself. Your mother was at peace the minute she stopped breathing, and now you must allow yourself to be.
Langmann @ 2.24
This aft a man called to speak to friend who wasn’t here so he and I had a visit. He mentioned again that his wife died a year ago and so I let him talk about it again as if I hadn’t heard it before.
His wife had a stroke in her late 50s and he drove behind the ambulance so arrived in the emergency room a bit later. According to her wishes, she had taken paper with her that gave her instructions to the staff that no measures be taken to keep her alive.
By the time he got there, a young female doctor was working on her and continued to do so against her wishes. He confirmed that she did not want to live the life of a cripple.
The result was that she spent 11 yrs in a nursing home and every day when he visited, she told him she wanted to die.
He did everything he could for her, even buying a van which would accommodate her wheelchair so he could bring her home on weekends, but knowing that it was done against her expressed wishes still bothers him obviously.
He said he should have sued them for the 11 yrs of suffering she endured.
Wonder if the inexperience of the young doctor had anything to do with the decision she made.
How can anyone be assured that their wishes will be followed?
Gee Dick, that is real benevolent of you; may God forgive you your vengeful attitude. Sheesh!
For the curious ones, I’m a American veterinarian, from the deep south, living in London, Ontario for over 14 years now.
I’m also the resident Conservative, lesbian contributor here at SDA. I own a Smart Car (for an advertising toy) and a hybrid Highlander SUV (when bought used, at half the price,they make financial sense) because I don’t like sending money to the middle east for fuel. My next vehicle will be a Volkswagon Turbo-Diesel.
I’m into conservation and decreasing pollution and I know that AGW is a scheme to transfer wealth, nothing more. I’m more of waste not, want not kinda girl.
Plus, I believe that every dollar you save is a dollar you can spend on something fun.
At the end of my life, I’ll not be kept alive by machines on the taxpayer’s teat. My legal paperwork is all in order.
As I have often stated,we do procedures and such to keep a patient “alive” long after it is feasible. We treat our pets with more respect and dignity then we do our loved ones.
Everyone should read this article.
My Stage 3C ovarian cancer mother, at the urging of a particularly pushy and sentimental relative, agreed to aggressive treatment that probably gave her a couple of extra months of life.
Months spent cursing with shame at the ostomy bag she had to wear (I can’t tell you how much she suffered with it.) Not to mention all the other indignities and other stresses — not the least of which was feeling obliged to put on a brave face for my aunt, who’d mistaken real life for an inspirational TV movie of the week, in which the rest of us were involuntary stars.
She’d actually been as resigned as I suppose one can be to her fate after the initial diagnosis. That was until my relatives started uttering movie dialogue instead of facing reality.
And don’t forget: all that “treatment” was “free,” right? “So why not use it?”!
We all have a personal story
Mine is that after my husband had a massive stroke, which resulted in a fall that broke 3 vertebrae in his neck, the doctors examined him and told us that all that was keeping him alive was the machine. If he did live, he would be permanently disabled, possibly a vegetable. The next question they ask, did he ever speak to you about his wishes. He did so there was no doubt.
It isn’t just advisable but imperative I believe to see a lawyer now, if you haven’t already. This is especially so if there are no adult children, and definitely if there are is more than one adult children.
Be prepared: I’ve heard stories of families not speaking at the funeral home. Take the decision out of their hands not just for your sake, but for their sake.
Kyra:
Welcome and thanks for passing this on. Excellent article.
Look forward to seeing more of what you find interesting in the future.
Thank you, Kyla.
I and my husband have paid a substantial legal fee, to have this all updated, with many specifics should paramedics have started treatment before that paperwork gets to the scene.
Funnily enough, I have thought about tatooing the demand, (or wearing a medical bracelet), for no measures beyond keeping any pain levels corrected.
I was a registered nurse. I know what happens and once those tubes and treatments are initated; it makes it harder for family and docs to stop.
I am thanking you, because each and every time I read an article like this, it still sits as ok with me.
I want it to stay good with those who will have to make that call. So far; so good. And I have sent this piece off to them to keep it fresh for them. Thanks.
Kyla, thank you for the article and your note.
A relative of mine died in the ICU, after days of sheer terror on his part. They had to tie his hands down because he was trying to fight off the nurses. The person “in charge” of his care was not really capable of making the hard headed decisions that needed to be made.
I’ve lately thought of this relative’s struggles: he was very ill—and in denial—and his vital systems were failing, so being in the hospital seemed reasonable. Would it have helped to have had him sedated? Breathing was hard for him: he probably felt like he was suffocating. Having his hands tied down must have made him feel claustrophobic and entirely helpless. Does anyone here know how one can alleviate the terror factor in a situation like this?
(Before his life support was stopped, he was given a “memory erasing” drug: the doctors said it would take away his memory of the suffering he’d undergone—or words to that effect—and erase the obvious fear he’d endured. I hope so! About an hour later, we asked the doctors if the process could be speeded up. They seemed relieved that we’d asked. “Yes,” they said. My relative died about an hour later.)
Kyla, I haven’t yet written my instructions for what I’d like to happen in a similar situation. (For one thing, I believe I won’t be in denial: so many wasted opportunities when that’s the case!) Thanks for the nudge.
And if anyone can answer some of my questions, I’d appreciate it.
Good old-fashioned common sense isn’t very common anymore. There have been several TV newsstories in recent years about severly handicapped people (like with MS) who demand their right to die – by a doctor’s hand. They have a right to die, but not the right to ask one who has pledged himself to the Hippocratic oath to do no harm, to off them. I’ve always been impressed with my late father-in-law’s hard life on a Prairies farm, then long, happy retirement on the West Coast. He took up golf before retiring at age 65. He then golfed and curled just about every day (often both in one day) until his failing eyesight made it impossible, even after a winter or two with his curling skip taping a flashlight to his broom as a target for Dad’s rock. At age 96, however, mini-strokes started taking their toll. They sold their house and moved into an old-age facility, Dad in a nursing unit attached. He never complained, but when he heard how much it cost to stay in that facility (he had too much money saved for his retirement, so the government made sure he paid his full share while subsidizing with taxpayers’ money those who did not save), why, he just simply passed away. He’d had a good long life. I’m convinced he just stopped eating. He wouldn’t think of asking anybody to “euthanize” him. Hell, he’d probably never heard such a word before. He knew enough, however, that if you did not eat or drink, you’d die. And in a fairly short period of time. With dignity. I would hope I could have the courage and common sense to do the same, and pass away in silent dignity. At my own doing.
lookout: They can always use sedation if a person is in terror. The reason most anesthetic drugs are chosen are for their amnestic qualities, literally means causing amnesia.
I let them radiate my Dad’s brain when he had Stage 4 cancer. I could’ve stopped it had I put my foot down.
He died barely able to think or speak.
I will never forgive myself for not kidnapping him from that hospital and taking him sailing.
Thanks for posting this, Kyla. I’ve forwarded it to my family members to read, along with an advance medical directive that I’d been putting off introducing. It’s never easy to have these conversations, but waiting till there’s an emergency is far worse…
Mom died an undignified cancer death and it marked the beginning of the end of our family. No will, no pre-plans, five fighting siblings, a detached father and a life time of family secrets slowly creeping out from the rug they’d been swept under. Not fun being a grown up. I pray my son will not have to go through this when I’m gone. At least there will be no siblings to fight with.
Discussion with regard to dignity at the end of life
is something we urgently need. We also need to realize that it’s a long way from futile car to new technology. Eight years ago I couldn’t even eat on my own and truly wanted to end things. Then along came a miracle and after very serious brain surgery I now have a wonderful life.
What I now see as important is the need to really discuss these difficult issues in a mature way and perhaps better understand ALL of the ramifications of choices and dignity at the end of life.
We all will get to the end some day and the discussion would be a lot more realistic if we had it before we got closer to the end.
I have told my wife that i don’t want any treatment for anything …as i beleive that if i go to a doctor other than little thing’s liek an in grown toenail and such ..or to get stitches or a cast typeo f thing’s ..i don’t want any treatment…i just want to live and die. not on a machine or listen to my family cry at my bedside ..i just want to die ..and in fact i want to die in my home not in a hospital.
I could go on about this all day. But to be brief, I’ve noticed in my experience as a GP, clinical assistant in the ICU and anesthesiologist in rural and urban settings, a few generalities.
First, those who’ve lived the rural/agricultural lifestyle, seen the cycle of life including death and dying, are far better able to cope realistically with terminal illness than their urban counterparts.
Second, there is a huge cultural element with members of some cultures able to deal with the issues and members of other cultures in utter and complete denial, wholly unrealistic and extremely belligerent toward medical staff and caregivers.
Third, it is typically those who’ve done the least to look after their own health in life (the morbidly obese, heavy smokers, heavy drinkers) and their relatives who want to make up for lost time when the chickens come home to roost, with doing “everything” to “save” them.
Finally, I don’t think Hollywood does anyone any favors — miracle cures and fairy tale outcomes served up in one hour or less. Life is rather more prosaic. And the major drivers for futile care in my experience have invariably been the family members, only rarely the health professionals who’ve seen it all before.
Also my dad died exactly how i want to die ..he had just eaten dinner and was sittine relaxed in his reclining chair after eating a nice portion of some sort of desert he should not have had (diabetic) but he did anyway …and he had a massive heart attack and according to the doctor died instantly almost with out a flinch…his wife did not know he was dead for like 5 minutes when she came into the living room after cleaning up the kitchen and said something to him he did not respond and then she noticed ..called 911 and the rest is history. god rest his soul !! love you dad (even after all fo the terrible thing’s you put me through ) !! 😉
Kyla – I don’t know why the full disclosure on things that have nothing whatsoever to do with the subject; but to each his own. One must be very careful when they go and sign “do not resuscitate”. I had a double bypass about 26 years ago and then about 8 years ago I had stents put in. While doing so, I lost consciousness. I woke up to a nurse or technician shaking me and calling my name. I apologized and said I must have passed out. She quickly stated my heart had stopped, and they had to do something (a jolt?) to bring me back. Would they have been able to do it if I had this proviso attached to my chart? At any rate, I know what people are meaning here, and I think it important that patients be put out of excruciating pain, but to the point of death? I don’t know, there have been “hopeless cases” that are still with us.
thnx Kyla . . . welcom to Kateland. You’ll find some common sense here.
timely information.
I am going to make sure I have some kind of pill or whatever so I decide how my end happens
Don’t need no steenkin’ badge carrying govmint type interfering in my business.
larben: RE full disclosure: every time I post something, there are a bunch of ‘who is Kyla’ comments. Just thought I’d get that out of the way.
A great friend of mine spent over 4 months in ICU, liver, kidney, and lung failure. They called his kids in twice to tell them he should die. Problem was, he was conscious, even though he couldn’t speak.
Long story short, his kidneys and lungs started working again and his liver is regenerating. He stopped by to see me at work the other day.
I have 2 people on my paperwork for pulling the plug. One has the authority to do so, and the other has to make sure I’m not just asleep on the couch.
The whole point of that article is that people who know medicine the best, often themselves choose not to go for the heroic measures.
Good point Kyla; I always get this weird feeling when a see doctor’s name in the obits. I kind of think, gosh he’s a doctor who has all the access to hospitals and treatments and such, and he still died! I know I’m being ridiculous, but my heart sinks just a little.
Thanks Kayla, DrD and larben.
This was interesting and poignant enough that I called my wife in to my office and read every comment to her.
Paul in Calgary @7.39
What on earth are you saying?
Of course, have treatment and do everything you can to live out your full span.
This advice is for people for whom everything has been done and they are terminal.
It is to prevent extra – ordinary procedures being done to elderly people (mainly) to prolong a life that has lived out its course.
This also can apply to younger people, of course.
There are walking, talking miracles, Paul, so don’t be too hasty with your decision.
Kyla said: “My next vehicle will be a Volkswagon Turbo-Diesel.”
That’s a girl! Go for the Snow Performance water injection, it’s be -awesome-! Mega power boost AND better fuel mileage, win-win for team diesel. Sorry for making fun of your Smarty so much, but I just can’t help myself. They’re so silly.
As to the article here, this is 100% accurate and authentic. It is the Real Deal, my friends. I’m just a lowly PT, but I’m going to be NO CODE big time when its my turn. Struggle through the nightmare of stroke “treatment”? Suffer the never ending cutting, stabbing, incontinence, lying there like a slug waiting for the bedsores or the flu to carry me off? No f-ing way, not if I have anything to say about it.
Anybody who has worked in a hospital more than a couple of days has stories. You do not want to be the guy that the story is about.
So TELL YOUR FAMILY how its going to be. Do not let Aunt Mabel or Cousin Bob get in there and twist your next of kin into “doing everything” while you’re passed out.
You do not want them to do everything. Because they will. And it will kind of work. For a really long time.
Glad that you’re still among us larben! You’re a living example of what could go wrong when a do not resuscitate order is in place.
Personally, I think the push for assisted suicide and euthanasia has more to do with economics – profitable tax paying “units” versus unprofitable “units” who no longer pay taxes and are collecting CPP or disability due to longevity.
The unprofitable “units” take up beds and consume health-care as well as other resources that could be better utilized, with a higher probability of a successful outcome, by a younger more likely to be profitable for longer “unit”.
People need to be careful when making these types of choices, not only DNR’s but organ donation as well. There are a plethora of examples of persons who have been deemed/pronounced brain dead who in fact were anything but.
What is important is that you have someone you trust that you know will have your back when the time comes for those types of decisions, or put your wishes in writing but even then it’s impossible to prepare for every conceivable scenario.
My wife, who has been an active RN for 40 years, says that many, many families insist on “heroic” measures for relatives, and-damn-the-highly-invasive-procedures, pain-to-the-patient-or-the-exorbitant-expense, because relatives feel ashamed about how they treated them in life and are embarrassed, so this is their way of making amends.
Vignette: Over a quarter century ago at old Louisville General Hosp my wife was discussing the merits of doing 3 more different tests on a patient whose previous 7 had all proved negative. All there were highly invasive and extremely painful as well as extremely costly. As all the previous ones had all agreed my wife opined that these tests were not likely to differ and on the basis of both pain to the patient and cost alone they shouldn’t be done. “Why worry about the cost,” the other college-educated RN said, “the government’s paying for it all.” My wife went Able Sugar. “Who do you think the government IS?” she replied, “those are MY tax dollars being frittered away–yours too.” Moral? All too many even college educated people seem to think “government money” is seemingly beamed in from the planet Mongo by Ming the Merciless’ green-backs ray. They, unbelievable as it may seem, make NO connection whatsoever with the tax dollars taken out of their pay-check and those spent by the Federal government..
We’ve watched various family members as they – to quote my late aunt – ‘shuffle off this mortal coil’. We’ve always tried to do what’s best for them. Can’t say the same for other family members, but that’s another story.
My mother lived near us for many years, moving here after Dad died. For the first few years, she was in serious mourning; had anything medical occurred then, she would have been firmly in the DNR camp. However, as the years wore on, she regained her enthusiasm for life (it helped that she had a lot of relatives who were 90-somethings before their time came up, so genetics were agin her dying young). She had a lot of great years, including grandchildren’s weddings. I asked about those, and her comment was to the effect of ‘I always thought, if I were to attend a grandchld’s wedding, that they would be too young to get married’. Said grandchildren were late 20’s when finally happened. Before that, there were a whole bunch of graduations and generally good celebrations.
Towards the end, Mum finally decided we needed to formalize things so, along with updating her will, she decided to give me the power-of-attorney and sign a ‘living will’ directive. Took her down to the lawyer, helped where could, and generally left Mum to it. When the day of signing came, I drove her back to the lawyer and waited for her to sign the paper. Lawyer came out somewhat perturbed: Mum (okay, her hearing wasn’t the greatest and she was legally blind) couldn’t understand something and was becoming agitated. Would I help. Okay. Went in and looked at the document in question: it was the living will directive. So I said to Mum: “This means I get to decide when to pull the plug.” Lawyer gasped and his young assistant was aghast. Mum just smiled, said “Right, dear”, and signed.
Fortunately, didn’t have to make that decision, but did use the power to ensure – to the best of my ability and knowledge – the last days as she moved away for us were as comfortable as possible. Will never know if it worked (oxygen and fluids for hydration were my requirement), but I tried.
Phantom: No code under any circumstances?
A man I had worked with who had had to take an early retirement (as a principal)which kept him house-bound went into heart arrest on a treadmill, and was resuscitated.
The close encounter with death shocked him out of his depression and he began a walking regime, lived healthier and he and his wife had a further 30 or so years of happiness. He died a few months ago during or after an operation at age 86.
I think one should make sure each case is well thought out.
My mother had a type of multiple system atrophy, known as striatonigral degeneration, where dopamine producing cell structures deteriorate and die in the brain.
Way back in ’98 while PM Paul Martin was taking a hack saw to the health transfers, my mother was left out of the loop as the diagnostic MRI she needed wasn’t available for nine months.
I begged favours from a radiologist to circumvent the ‘official system’ such as it was then, because it plainly was ignoring symptoms everyone could see.
After sending a fax to ‘interested parties’ running the health care system, suggesting ‘supervised neglect’ I promptly delivered my mother to the UBC Health Sciences for a proper diagnosis, which they originally wanted to stall for 12 months.
The head nurse at the time realized that the ‘system’ had let my mother go for far too long and that they would find a bed for her.
A 3 week stay ensued with a battery of tests, after which palliative care ensued. 18 months later she passed.
I don’t need ‘medical heroics’ either just a system that deals with obvious stuff instead of being bloody minded by trying to ignore it.
Cheers
Hans Rupprecht, Commander in Chief
1st Saint Nicolaas Army
Army Group “True North”
gellen said: “Phantom: No code under any circumstances?”
-No.- Obviously everyone has a different situation, you have to use your head. Figure out what you want, and then make sure everybody knows what it is.
My old man’s 85, he’s healthy as a horse and has let us all know he prefers to be taken out of the house feet first, thank you. No argument from me.
Always err on the side of life.
Interesting article although I suspect it’s written from more of a US viewpoint as long ICU stays in Canada just don’t happen regardless of what clueless relatives have to say. I disagree with him about CPR as the only ribs I’ve broken on people when I’ve done CPR are in the very elderly (where CPR shouldn’t have been done in the first place) and the survival rates at the arrests I was at as an intern were far higher than given in the article. My record was 3 hours of CPR on a hypothermic alcoholic who recovered to the extent he could go out and drink again.
My personal view is that I don’t think that death is natural and at some point it will be a thing of the past. That said, I’ve had only a couple of people ask me about getting their bodies frozen at the moment of death although I’m not sure if the cryonics folks current processing will create corpsicles that are revivable in the future.
Fortunately, a lot of people now have advance directives which they’ve communicated to relatives and it makes it a lot easier when their condition deteriorates. Whether people want to get aggressive in treating what seems like an obviously fatal illness is a personal decision. I’ve seen lots of people succumb to cancer and our treatment of cancer will probably be seen as the equivalent of casting out demons by trephaning by future generations. Still, there are people who are determined to pursue aggressive treatment and they’ve survived when my prediction was that they wouldn’t.
Often, the survivors are the ones who we’ve given up on and withdrawn medical treatment. Not that long ago I admitted a patient with CHF and anasarca who also had severe sleep apnea. The internist who saw him just recommended palliative BiPap which he was given. With this treatment he began to lose fluid and went home much improved. I’ve also had patients discharged from hospice for refusal to die.
The worst cases are the individuals with severe dementia whose body seems to function flawlessly. I hope I’ll have the presence of mind to blow my brains out before I get to that state.
A lot of time what keeps people from dying when they should is guilt of relatives. Children who’ve had nothing to do with their parents for years suddenly want “everything done” when their parent is terminally ill. If there are no advance directives, this can be a very messy situation.
Most physicians I know believe in very aggressive treatment for conditions that are treatable and alleviation of discomfort for terminal conditions. Having seen what a lot of people go through with chemotherapy for cancer, it’s not a route that I would be interested in taking. Physicians have their own way of dealing with terminal conditions: ondansetron + a fatal dose of morphine or a bullet to the brain if they own firearms. (the former is less messy than the latter).
Ultimately, treatment should be individualized to the patient and what one person views as unacceptably invasive someone else will have no problems with. We’re at a very primitive stage of medicine now with our replacements for various organs being massive external devices and these will shrink down in size over the next few decades (assuming we don’t have a global financial crash). Then, the primary determinant of whether someone should be kept alive “artificially” will be if their brain can be adequately repaired.
The smell of fresh bread, a really heavy rain, fresh cut spruce. I’d miss those if I died……
Great link, Kyla. I visit my aunt and several friends in a nursing home, and I am printing this article for the nurses there to read.
While I agree that in some cases family guilt, as mentioned by loki and others, can be a factor in making an end of life decision for a loved one, I think it is a serious mistake to assume that this is the only reason for delays.
Many family members sincerely want to ensure that there is in fact nothing further that can be done that they know the loved one would want to be done if they could speak for themselves.
Also, one needs to consider the grieving process that occurs in those who are losing a loved one. It takes time to come to the acceptance stage and even more time if several family members are involved as each passes through the grieving stages at their own pace.
Facing death is an individually complex spiritual and otherwise journey for all involved. It is said that death; especially suicide, is associated with at least some degree of guilt. That said, it’s simply too simplistic to state that it’s all about family member’s attempts at alleviating guilt or making amends at the end.
Doctors may wish for an non-interference in their time of dying, but when it comes to their own children, they make the same emotional decisions as the rest of us.
From my point of view, allow God to decide. From yours maybe, let Nature take its course.
If a patient wants the help, fine. If not, than honor their wishes. I am of course completely against assisted suicide or “helping” a patient along. To me thats murder. When you know your numbers up with a bad, no curable disease. Ease the Persons passage with pain drugs, with family care. Send them home to die instead of an institution. If no family than a good Hospice. Why should they go through torturers even the Inquisition, or medieval princes couldest conceive of. Always have hope though.
My mother died 3 months ago. At 92 she came from an era where basic decisions were made and lived by. She did not want to be maintained in a hospital and we did all the paperwork that ensured that would not be the case.
This planning did not change the reality of her passing. It was not a docotr who told her that she would not be getting better but my sister and I. With a clinching of her jaw and a ‘I have had a good life’ the ambulance took her to the hospice room. Death is not a comfortable experience for many. My mother was of pioneer stock and she did not let go easily. As much as we encouraged her to take the rest she deserved she fought for life for 3 days. During that time she had no food and the pain killer (morphine) was dripped into her body to kill her. Little of that time appeared to have any awareness to her.
My mother did not die at home as she wished and that will haunt me until the day I die. My sisters and I were intimidated by her need for pain medication and our inability to provide that outside the hospice experience. Near the end she told me that I was a ‘good father’. If that was true then why couldn’t have I done a better job in helping her pass?
Interesting how the ‘differently oriented’ are so concerned about sex and death.
More of a leftist trait, with all the emphasis on pleasures of the flesh. With death kind of being the ultimate orgasm…
Just a pattern I’ve noticed…
As a physician who works both in the ER and ICU, I have to agree with much of what Loki said.
I can count on my hands the people I have been able to bring back with absent vital signs, however there was always something about their case that provided some hope that therapy was going to work. There has been no time where I thought it was hopeless where anyone survived (but we still tried because the family wanted us to).
Make sure you discuss with people around you your end of life wishes. That way they will be recognized.
@ Phantom: We might actually work together, do you do PT in HGH or SJH?
A friend if mine who is a funeral director told me that many doctors have treated him poorly over the years. Signing the death certificate and releasing the body to him was “defeat” he guessed. Could be a god complex on part of the physician, I don’t know.
I’m more concerned with shyster funeral directors guilting families into buying top of the line caskets to show how they really loved grandma than a doctor who’s tried everything he could.
ct @ 10.41 – so sorry to hear your story. It’s easier said than done, but please forgive yourself. Your mother was at peace the minute she stopped breathing, and now you must allow yourself to be.
Langmann @ 2.24
This aft a man called to speak to friend who wasn’t here so he and I had a visit. He mentioned again that his wife died a year ago and so I let him talk about it again as if I hadn’t heard it before.
His wife had a stroke in her late 50s and he drove behind the ambulance so arrived in the emergency room a bit later. According to her wishes, she had taken paper with her that gave her instructions to the staff that no measures be taken to keep her alive.
By the time he got there, a young female doctor was working on her and continued to do so against her wishes. He confirmed that she did not want to live the life of a cripple.
The result was that she spent 11 yrs in a nursing home and every day when he visited, she told him she wanted to die.
He did everything he could for her, even buying a van which would accommodate her wheelchair so he could bring her home on weekends, but knowing that it was done against her expressed wishes still bothers him obviously.
He said he should have sued them for the 11 yrs of suffering she endured.
Wonder if the inexperience of the young doctor had anything to do with the decision she made.
How can anyone be assured that their wishes will be followed?
Gee Dick, that is real benevolent of you; may God forgive you your vengeful attitude. Sheesh!