WE HAVE A MEDICAL profession apparently wedded to the notion that quantity trumps quality. That’s why, although I have no problem with being dead, I have serious concerns about the process of becoming dead. I have no wish to linger for months attached to tubes, or to disappear for years into the mists of dementia.
I have few childhood memories, and I wouldn’t swear to the accuracy of those I have. Still, one from my teens has remained with me. It was the last time I saw my maternal grandmother, then in her mid-90s and confined to a hospital bed. I remember her begging me to help her end her life. It’s possible she only meant for me to help her get out of the hospital. But either way, I was as helpless as she. My mother, on the other hand, died in her sleep in her own bed, after declaring on her 90th birthday that she was ready to go. I can only hope for the latter death. The steps I can take to avoid the former may not work, but I have to try.
First, I have appointed a health care power of attorney. The friend who agreed to serve understands and agrees with my views on end-of-life care. She will, I am sure, say “no”—loudly and persistently—if required. Second, I have a living will, also known as an advance medical directive, that specifies what treatment I do and don’t want in certain circumstances.
My lawyer prepared both documents, along with a financial power of attorney, when I updated my will. I have copies, the folks appointed in my powers of attorneys have copies, and my lawyer has copies, plus they’re stored online with Docubank. I carry Docubank’s card in my wallet. In addition, my medical records include contact information for my health care power of attorney. These documents are state-specific. If you’re a snowbird, you probably need two sets. If you’re living on the road, you should talk to your lawyer. Don’t have a lawyer? You could choose to do-it-yourself.
Third, I have a DNR—a “do not resuscitate” order—which states that efforts at cardio-pulmonary resuscitation should not be initiated. Again, this is state-specific. Mine, bright orange, carries the seal of the State of North Carolina, along with my doctor’s signature. I have one in my handbag, one in my car and one in my apartment.
Whether the DNR would be honored is, sadly, not clear. If you’re taken to a Catholic hospital, possibly not. If you’re in the operating room, possibly not. The nurse who was about to put me to sleep before eye surgery informed me, rather self-righteously, that a DNR carried no weight there. This completely baffled me. Dying on the operating table is the epitome of a good death. Why mess it up when my wishes are clear?
These precautions are for unexpected events—a car accident, a stroke. What about a disease promising a slow death? What about Parkinson’s, Lou Gehrig’s disease, dementia? The medical profession usually won’t help you. Physician-assisted suicide is legal in just 10 states, plus Washington, D.C. You have to be within six months of death, make multiple requests and be able to administer the dose yourself.
Meanwhile, the do-it-yourself methods are unattractive. I could emulate the Romans and slit my wrists, but that seems unfair to the person who finds me. I could visit Mexico in search of pharmaceuticals, if I knew which ones to ask for. Katie Englehart explores some of the options in The Inevitable.
If I have one of those diagnoses, I hope I’ll be able to take a one-way trip to Switzerland, where the right to die is not limited to citizens. It’s not an easy road, requiring multiple interviews and much paperwork, but it is certain. Amy Bloom chronicled the journey she took with her husband, after he was diagnosed with dementia, in her book In Love.
You may find this topic morbid or distasteful. But isn’t it better to think about it ahead of time, when there’s no urgency? You may say “let nature take its course,” but we have made that so difficult. Pneumonia used to be called “the old man’s friend,” but now we cure it with antibiotics. Death will not stay his hand because we pretend he doesn’t exist, and is likely to be less frightening if we acknowledge him. Articles on this topic draw anguished comments from people who watched helplessly as their loved ones died badly. Do what you can to avoid that fate.
Kathy Wilhelm, who comments on HumbleDollar as mytimetotravel, is a former software engineer. She took early retirement so she could travel extensively. Born and educated in England, Kathy has lived in North Carolina since 1975. Her previous article was Continuing Care.
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Kathy, I wanted to ask you who you chose to be the executor of your will? It is a tedious, time-consuming job that I do not wish to impose on friends. I would rather use an attorney but how to find someone you can trust?
Right now it is my former step-daughter, who lives in Oregon, with my younger sister, who lives in England, as back up. I am aware this is not great, and am interested that the article on estate planning that was posted this morning has a different solution. After I move to a CCRC this fall I plan to ask around to see if I can find a reputable fiduciary to do the work instead. Although almost everything I own will pass to designated beneficiaries outside my will.
to mytimetotravel
I am most curious about your reasoning behind death on the operating table being a good death. My standard for a good death may be in need of some brushing off. Any clarification would be enjoyed. Thanks!
You go to sleep and you don’t wake up. If you’re a prudent person you likely made sure your will etc. were in order beforehand. What is your definition?
I think admiring/seeking a peaceful death is more humble, and I may naively desire the experience of dying while doing something novel with full mental presence out of having some idea that I’m special. I understand how little I am in control of what fate will come my way and I still think I want to be alert for my final moments. I definitely lean on the side that there is a definable point in time when I should not be medicated to prolong my life. It’s sobering and hard to imagine that I could be permanently effected at any moment and loose my ability to decide whether I am to be medicated regardless of my quality of life.
I’m a young person and you have inspired me to be more proactive about making the choice to think about this. I plan to discuss it with my loved ones while I can. The one thing I know for sure is that I do not want it to be difficult to “let nature take its course” and I want to capture as much freedom in how I die as possible.
I am so pleased that my article led you to consider your choices and plan to discuss them – thank you for telling me. I hope it is many years before you actually face death.
I am not sure, however, that I understand your image of your death bed. Unless you die because you wear out, as my mother did (and she died in her sleep), you will die from something. Maybe a disease: we have made a lot of progress against cancer but we haven’t defeated it; maybe the next pandemic. Maybe an accident: car crashes are the leading cause of death among people under 24; accidental poisoning among those 25 to 44. Maybe a medical “incident”: a stroke or heart attack. Your chances of doing anything “novel”, or even being in full possession of your faculties in those circumstances seem poor to me. You may – let’s hope not – find yourself with a choice of terrible pain or the oblivion of morphine.
FYI, at least here in NH, the DNRs need to be originals and colored pink, not white, otherwise, I’m not allowed to use it, no matter what the family says. And in the other side, if there is a properly documented paper (stuck to the fridge is a common place that we look for it), and the family insists that it is wrong, we will do our best to obey it and probably call our supervising doctor to verify, and hopefully he agrees with the DNR, but that has to be a hard time for everyone involved. So hopefully the family agrees with your decision (I’ve always wondered if a family member who doesn’t agree would be smart enough to hide the paper before we get there).
-EMT
Thank you for your information from the “other side”. My family members are in the UK, and I have informed the one most likely to be involved. When I move to a CCRC in the fall I have been instructed to leave the DNR in the freezer, but attached to the door sounds better. Issues with family members would be one reason to make sure the documents are included in your medical records.
I wish you a long, productive and healthy life! Your articles and comments on HD are much appreciated.
Thank you! But at 75 some precautions are only prudent. I am getting to the age when I may start refusing some (bi-)annual diagnostic tests.
Now, that would make an interesting article, too. My mom is 81 and refuses both mammograms and colonoscopies (she uses the Cologuard option instead). I’m not sure about refusing mammograms, but I definitely would get (at least) a second opinion if a mammogram turned up suspicious. It would be interesting to think through the cost-benefit analysis of refusing the tests and/or what the economics of those tests are, both for patients and medical providers.
On a related note, it only recently occurred to me that I could drop the optional disability coverage that I paid for at work. I’m planning to retire in a couple of years, and if something happened that required long-term disability coverage, I’d just go ahead and retire. I probably could have dropped it several years earlier and saved some money.
I switched to fecal occult and then Cologuard a while back. Last time I checked, the US was the only country using colonoscopies as the first line of defense, which I suspect is because they are so profitable. The only time I had one was at my PCP’s insistence after a stomach bug I picked up in Thailand proved resistant to Cipro. My colon was pronounced squeaky clean and the bug vanished, which leads me to wonder about the effect of the prep on the gut microbiome, which we are supposed to be cherishing.
I carried disability insurance on top of that provided by my megacorp until the year I retired, but it was very cheap, and the benefits very good.
Oh, and always, always consider getting a second opinion! I recently avoided vascular surgery by doing that.
“I could visit Mexico in search of pharmaceuticals, if I knew which ones to ask for.”
Apparently, the stuff they call fentanyl works really well.
Kathy, thanks for this well-written and informative article.
Following the do it yourself link, I noted one example suggested placing a copy of your directive in a personal medical info app. I’ve never heard of such a thing other than those used by providers, and a quick look at the App Store doesn’t turn up anything, so I assume those are what’s being referred to.
Thanks Michael. I agree it’s probably talking about providers’ medical records – for instance, most of my providers use MyChart, but one has their own system. However, I did find this: https://www.cms.gov/medicare/e-health/perhealthrecords
You have so much courage, Kathy.
so many people won’t even discuss this subject, more less put plans in place.
Thanks, but my fear of being trapped into a bad death is greater than my fear of facing the fact of death.
I wish I could do things your way, but I am the opposite. Before going to sleep (even just a nap) I tape a note to my forehead stating that I am a deep sleeper and that all means of revival should be exhausted prior to burying me.
Absolutely your choice and your right, and good luck. My problem is with the people who want impose their choices on others.
Kathy, this is a GREAT article. Thank you.
I have very, very strong feelings on this subject. I will not live in a state that doesn’t allow assisted suicide. As a stage 4 cancer survivor, I have bluntly told every new oncologist I’ve worked with that I had no intention of dying of cancer, and if he wasn’t good with that, we couldn’t work together. My new doc at Fred Hutch assured me he has written that prescription before and has no hesitation about helping me exit if it is ever required (although I’m now into my 7th year of remission, I will never hear the word “cured”).
I learned from my mom. Devastated by MS, she found herself confined to a nursing home bed at 62, about to lose her ability to speak and swallow, but with a cardiovascular system so healthy she could have lived into her 90’s on a feeding tube — a living nightmare for 30 years. No way she was going to do that. She told her family she was checking out, and stopped eating. We all supported her decision, and she stood strong against the Catholic nurses who tried to feed her in the middle of the night when nobody was around. She went out with her dignity intact, which was profoundly important to her.
You reminded me I need to update my health care power of attorney and living will for my new state of residence, but I never even thought about having multiple copies scattered around and online. Thanks again for a superb, informative bit of work.
Congratulations on the remission, and all kudos to your mother, that can’t have been easy. I am fortunate that none of the hospitals in my area are run by Catholics, and the two main chains belong to universities so are unlikely to be taken over. However, that says nothing about individual doctors and nurses.
I find the right to die laws that exist in the US inadequate, so have not worried about living in a state without one.
I feel fortunate that my primary care physician encourages informed end of life decisions and makes available an advance medical directive form and the necessary witnesses and notary to make the document legally effective in my home state. I have taken appropriate actions for my wishes to be known and followed. Many people do not take the appropriate action to create the directive for reasons of cost or inconvenience and need a nudge.
Like you, I am also concerned that when others making decisions on my behalf require actions not to be taken that my decisions will be unknown to the people trying to help or will be ignored.
I have also taken the step to record my desire to be an organ donor on my state driver’s license. My understanding is that the window of time after death is short for successful use of donated organs and the need is great.
I would hope an option to indicate the existence of an advance medical directive could be added to driver licenses much like the decision to be an organ donor or recording my status as a veteran. The process of getting an advance medical directive in place needs to routine, easy and inexpensive (or free) to be effective.
Thanks for writing about this topic.
Congratulations on your choice of physician. I had to change PCPs to find one who agreed with me. Every time I had the end-of-life discussion with my long-time PCP she would say “don’t you want us to revive you if you have a heart attack in the parking lot”, when I had just made it obvious that I did not.
There is so much valuable information here! You did a great job making it doable.
Thanks. It’s so important to deal with these issues ahead of time. – it’s far too late to start on the documents when you actually need them.
Thanks for a very informative and useful article. It’s a tough topic and you handled it well.
Thank you. It’s a subject I care a lot about that doesn’t get enough coverage.