by Ken Murray
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie 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 family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).
Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. 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.
I personally would want to go with Propofol.
Probably not something you can keep at home just in case.
So I'm looking for other more practical solutions of the same type...
He brings up the same points that I think about, especially when it comes to living pain free. His thoughts about hospice and not having medical procedures that might lengthen life if that life is not comfortable I agree with completely.
My mother died after a bout of pancreatic cancer. One doctor wanted to go rewire her digestive system. I had read about the procedure, and actually had a friend who's father suffered from the same. She told me he opted for the surgery, but when he was opened up the cancer had spread too far for the procedure. So he got to spend precious time trying to heal from the operation, didn't work out well. We told the surgeon she wasn't going through the ordeal, he was pissed.
Sometimes I think these life saving acts are in essence experiments, nothing more. My uncle had colon cancer, he went for the experimental procedure. Lived a year longer as a lab rat in pain. Not sure if it is worth it.
I think I need to make sure that nothing crazy will be done to me when it's that time.
When I got accepted for bone marrow transplant, I understood the odds and the fact that this was a proven procedure - having been perfected during the past ten years or so - but also that I was part of an ongoing experiment, there were non-negligeable probabilities it's consequences might still kill me. I signed a paper allowing all the data on my treatment to be used for research.
I also signed (and told my family of my wish) a form stating that I was not to be the subject of attempted resuscitation if I went into a coma.
I'd love to see numbers on doctors' final days. It would be telling us a lot about their own faith in their art.
EDIT: Or it would tell us about the cultural slant that makes death a taboo that has to be avoided at all costs. A cultural slant that prohibits them to think in terms of helping someone to die.
I think there is a difference on what care a patient may want that depends on age. If you are young you may want every option examined, if you are closer to the end of a natural span of years, you may be more interested in going as gently as possible.
//"We told the surgeon she wasn't going through the ordeal, he was pissed."//
oh, i believe you, my guy's doctor is sort of the same way, there are very aggressive docs out there, shiver. I'm always trying to get him to get a new doc, and i am always arguing with whatever his doc wants him to do. (luckily, he is healthy person, but, he would be on bags of pills if his doc had HIS way.) His doc was also pissed, when he realized i had helped Craig lower his cholesterol and his blood sugar, without ever filling even one of the dangerous presriptions he'd ordered for Craig....this doc acted insulted! instead of saying, "that's marvelous!" he got honked off.
I can never decide, if it is financial lure that leads such docs to push for surgeries on for terminally ill,
or if such docs somehow manage to focus on the graphs on the charts instead of the human in the bed
or if, one case they did feel did help, eggs them on....or if they have developed a god complex or what...
not all docs are like that, though, not at all.
but thank dawg, that you Neal, were a strong, well-informed advocate for your mom, cuz it does take a strong advocate at times, to avoid the spiral of never-ending interventions for the dying. The more one knows about such things, the more repulsive many of the options offered are.
I meant to respond to this earlier, lazy bastard I am. =)
It was irritating that they talked my mother into a pacemaker, the nurses told me it would be much easier to go from a heart attack than the cancer, but no. 3 months before the end of her life they gave her one, didn't make it any easier.
Exactly the same thing happened to the mother in law of a friend of mine. The pacemaker only ended up prolonging suffering for a few months. That is lunacy.
//"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."//
this is SO true, having seen the ridiculously painful and futile extravagant attempts done on dying patients, to prolong their life, robbing them of peace and dignity, upsetting to the families, i've become increasingly adamant i will not be tortured in this way, i will not have my family tortured in this way---having seen so many ppl tortured in this way that i have actually toyed with the idea of a tattoo! wow.
Loved this article, it is so so true. The "treatments" offered, are often far worse than dying itself.
//"What it buys is misery we would not inflict on a terrorist."//
this is so perfectly worded, i wish more ppl were aware of this, of the futility, of the pain, of the increased suffering, of the scanty time the dying person HAS left, and how all of it will be spent trying to recover from the "treatments" being done, instead of being with loved ones and saying their goodbyes.
Sadly, many times, it is family who pushes us to "do Everything".........i am certain their intention is nothing but the most pure,
but they can not be brought to realize how awful what they are choosing to have done really IS. Info seems to bounce off of their heads, they hear what they want to hear.
Do keep in mind, nothing can be done to a person without their consent, except in the most rare of circumstances. It is a legal issue. Ppl are agreeing to this crap.
even the rare patient, who says "no, i will die peacefully, on my own terms, in my own home, it's coming, i want to prepare, i want to say my goodbyes, i want to spend this time putting my affairs in order" is given pressure by families who see that as "giving up", or quitting on them.
I've seen families, and patients, desparate for hope, grab at operations and chemo and other horrific measures, to prolong death. (and sometimes these things CAN save a life, but often, when performed on the dying, on those with proven terminal illnesses------- it is known at the outset, it is futile)
Occasionally, it is the doc, leading the person to wards this choice, but more often than not, i can watch the doc, plainly explaining the options, in a no-nonsense way, making it pretty clear, the brutality that lies ahead if you choose this here fork in the road,
the patients and families, "I'm not giving up, i want to live, i'm a fighter!!! i'll do this surgery, give me the consent" etc etc. I can see the doc reiterate the risks, what the result will be like, the small % chance of improvement, still, they ask for it, they want it, they think medicine is magic or something. They seem to see it as "being a fighter/not being a quitter" kind of thing. <---------This attitude is rampant, not sure where it all started....
It's all sad.
Way too many ppl think of death as something they picture in their minds as ppl in ICUs with multiple tubes and surgeries and interventions, but, it doesn't HAVE TO be that way...and like Dallas's post above points out------>these things DO take up the precious little time the dying person had left.
slightly off topic, but, when a family conference is called, to decide a choice for the terminally ill, if the patient is no longer lucid to make this decision and there is no living will, i can SPOT the "long distance relative" in the group. Always.
They stand out in my mind. this is the person, who wants everything done. The standby kid, the primary caregiver kid, is often more open to focusing on creating a peaceful death,
but the long distance kid, wants everything done. I've sometimes speculated, the long distance kid, may ache for time? may be less aware of the recent decline of the parent? not sure what it is, but the long-distance relative is easy to spot in the care conferences....If they are the legal 'next of kin'/ the one choosing what to do, then the result is more likely to be "do everything".
Great article. But still, some doctors I know want the kitchen sink thrown at them, though, even though they know what they will be going through. Aside from the fact that I do think many physicians are way too interventionist, I think the aggressiveness of treatment is sometimes proportionate to the non-acceptance of death many people have. I have seen people hold tooth and nail to a life that was really of such horrible quality. My mom was like that, she wanted to be kept alive at all costs. She never said: "enough, time to go now". She was not ready, and she was 84 and she had had had a very good life. She just couldn't bear to part with life. It was very sad to see. Thankfully, she was non-responsive for a couple of weeks before she died, so I don't think she noticed, though I have my doubts. I still get upset when I think of her death, and it's been 6 years already.
I loved this post so much, yet it filled me with some apprehension. It is at odds with my stated philosophy, but I do feel this false sense of security from the medical establishment and that comfort is...well...comforting. I hate how finite life really is, but I realize that life has never been concerned with my feelings. I just hope I go quickly and peacefully in my sleep.