How We Die: End of Life Planning

Last week’s post on the fear of death got quite a discussion going, and I appreciated the perspectives that folks shared on the subject. One interesting issue that people raised involved the circumstances of dying itself – specifically dying within a traditional medical setting where interventions and technology to prolong life abound. It reminds me of the old Woody Allen quote, “I’m not afraid of death. I just don’t want to be there when it happens.”

As a whole we do, indeed, die differently these days compared to our ancestors – certainly Grok and his clan but perhaps even our grandparents/great-grandparents. Science, to its credit, has developed ways to save and even restore quality of life in situations that would’ve been our inevitable demise even a few decades ago. But it’s a different focus than efforts that simply prolong life in a technical sense. That leads me to today’s question: in a decidedly un-Primal medical world, what role can self-determination play in a “desirable” death as it does in a vibrant life?

Years ago I read a book by a German author, Rainer Maria Rilke, that talked about the “good death.”
Far from a romantic description, the narrator recounted in tremendous detail his grandfather’s dying, which had been larger than life itself, a force of nature that exerted its own astonishing power to all who witnessed it.

Those of us who have been with the dying – human or animal – have seen first-hand the magnitude of the experience. I’m thinking here particularly of those situations in which people choose to die – and/or are given the opportunity to die – without the surroundings of medical devices, without the barrage of technology and extreme medicating you find in most hospitals and sometimes in home hospice situations.

I saw an older family member die this way many years ago. She refused drugs – even pain killers. It was her way. We all knew her to be stubborn in life and it was little surprise these were her choices in death. The experience was nothing like Hollywood. The noise, the movement, the duration. People can be in the throes of death for days, even weeks.

By contrast, I’ve seen elderly family or even younger people whose vitality was cut short by accident exist for decades in a vegetative or near-vegetative state because loved ones wanted to continue “life”-prolonging interventions that even doctors advised against.

I think most of us want to envision the ideal death for ourselves (e.g. to die peacefully in our sleep) and on some level assume we’ll be fortunate enough to actually go that way when our time comes. Perhaps that will be our fate. But maybe it won’t. Are there alternatives we can’t bear to imagine? How many of these involve medical intervention – circumstances in which we could have a say if only we’d shared it (and signed it) before we were suddenly unconscious and unable to assert our preferences.

How we die (when given a choice)…it’s such an intimate question we must consider for ourselves. I don’t think it does much to sit in judgment of others around the topic as too often happens. People’s passions get stirred by a larger brouhaha, and they entirely miss the chance for stillness that can genuinely open up the question with any clarity. Better to observe the real facts and then look deeply within our own consciences. What does each of us want at the end of life? How do we even want that “end” defined for ourselves?

If we develop or already have a terminal disease, what interventions are we willing to accept to prolong life? If we’re in an accident or experience an acute event like a major stroke that leaves us in a vegetative state, what medical care do we want to be offered or withheld/withdrawn? Do we trust that people in our families would be able to intuit our real wishes, let alone act from those when faced with shock, grief and other pressures?

And another critical area of questions… What are our assumptions regarding the nature and success of medical interventions? Do these perceptions match what a physician would tell us? What would a doctor choose in these types of instances?

The results of a large, well-known study actually reveal some of these thoughts. In the Johns Hopkins Precursor Study, over 700 physicians responded to a mailing asking for their medical care preferences given dire health circumstances. Their choices might be surprising.

In the instance of irreversible brain damage, most (81%) reported they wanted pain medication to be administered. However, even more than that (90%) said they would not want CPR to be offered. Nearly 90% said they wouldn’t want ventilation or dialysis. Approximately 80% reported they wouldn’t want surgery, invasive testing or a feeding tube. Seventy-five percent said they wouldn’t want blood to save their lives.

A Radiolab interview shared more perspective on these choices, including the personal decisions of one doctor as well as facts about common interventions most of us believe are more effective than they are. Fictional television shows, for example, depict 75% of people revived after CPR, but in reality only 8% of people are still alive a month following CPR intervention. Of those, only 3% return to a “good outcome” with a “meaningful quality of life” as opposed to a vegetative or semi-vegetative state. In the interview, we learn that many doctors carry “no code” medallions that communicate their wish for no significant intervention in terminal or dire irreversible circumstances.

Their perspective on the effects – and effectiveness – of interventions gives pause. No one is arguing that we shouldn’t offer reasonable intervention to people with serious injury or health events when they have a chance of being restored to quality of life. At issue is technologically sustaining a literal threshold of “life” for someone who is already terminally ill or irreversibly incapacitated, unaware and perhaps even unconscious. When someone who is already on the brink of nonexistence begins to slip, what do we do – or accept and not do? As one doctor explained it in the Radiolab interview, “We do a poor job communicating futility to patients.”

Let me be clear, I’m talking about self-determination – as in self. It’s not about legislating other people’s choices. It’s about taking full responsibility for our own – while we still have the chance to.

A few readers mentioned advance directives, and that’s the best tool we have. Advance directive is an umbrella term that offers health care instructions or designates someone (a health care agent) who should make care decisions for you based on previously communicated plans/wishes.

We’re straying into legal waters here, and I make no bones about this being merely blog commentary and not legal advice. Generally speaking, however, with a living will, you can communicate ahead of time what medical care you would like offered, withheld or withdrawn in given medical scenarios. You can authorize, for example, the offering or withholding of everything from CPR to artificially provided foods, intravenous fluids, antibiotics, medications, testing, blood and other procedures/technology. You can also delineate acceptable health states or outcomes of treatment.

Amazingly, you don’t even need a lawyer to create a living will, but you need to consult your state’s requirements and have your document notarized. Likewise, you should also talk with your doctor(s) about your wishes, particularly if you have a diagnosis of concern. You can also ask your doctor about keeping your wishes on file in the clinic records. Certain national registries exist for this purpose as well.

In addition to a living will, experts recommend choosing a surrogate or proxy who you authorize to speak for you in health care matters. There are often instances when a living will may be contested by family members (even with the best planning and prior discussion) or when a situation might not be entirely clear given the language of the living will and the current circumstances. A legally designated agent in an advance directive will be able to speak for you when you are unable to and will have the authority to carry out your wishes.

We put a great deal of thought and effort into the good Primal life we want. We envision a certain level of health and work to sustain it because we want to define our lives a certain way. While it might not be the the most hopeful of considerations, I think the argument can be made for defining your end of life in certain circumstances.

Rilke, the author I mentioned earlier, captured the highly individual and intimate nature of death in a poem from his Book of Hours. He hoped that we might each be given “our own death, the dying that proceeds from each of our lives: the way we loved, the meanings we made, our need.”

That sounds to me like a fitting end to a vital and substantial life. Here’s to a good death…

Thanks for reading today, everyone. Share your thoughts, and have a great end to your week.

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TAGS:  Aging

About the Author

Mark Sisson is the founder of Mark’s Daily Apple, godfather to the Primal food and lifestyle movement, and the New York Times bestselling author of The Keto Reset Diet. His latest book is Keto for Life, where he discusses how he combines the keto diet with a Primal lifestyle for optimal health and longevity. Mark is the author of numerous other books as well, including The Primal Blueprint, which was credited with turbocharging the growth of the primal/paleo movement back in 2009. After spending three decades researching and educating folks on why food is the key component to achieving and maintaining optimal wellness, Mark launched Primal Kitchen, a real-food company that creates Primal/paleo, keto, and Whole30-friendly kitchen staples.

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63 thoughts on “How We Die: End of Life Planning”

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  1. I highly recommend “Being Mortal” by Atul Gawande if you want to explore end of life options for both living and dying and the importance of having these conversations with your loved ones BEFORE you get sick or hurt.

    1. I second Cheri’s recommendation. Being Mortal is a must read. Living wills and advanced directives are a great start but the conversation that needs to be had goes much deeper than any document, and the answers to the questions that need to be asked are unique to each individual. Another good read is Ezekiel Emanuel’s article “Why I Hope to Die at 75”.

    2. That is a great book and it also talks about how we treat older people who are not dying, but who should be able to be self-directed and respected and not kept “safe” at the cost of quality of life. It is so frustrating to see someone’s mobility curtailed in the name of safety. I want to be allowed to fall down and get injured until I can’t stand up anymore! So-called stepped-down assisted-living places tend to threaten inmates with moving them to a lower ability status if they don’t do what the institution wants them to do in order to streamline care and reduce insurance costs.

    3. A most excellent book. Everyone should read it. I was just diagnosed with colon, lymph node, and liver cancer, so very timely post from my POV.

  2. I absolutely love this topic! I teach college Psych classes and the last chapter in Gen Psych is Death & Dying. It’s amazing how physically uncomfortable many students get when we start talking about end of life. It’s usually the first open conversation many of them have had on the topic.

  3. Talk talk talk to your children (adult), your spouse and get a living will and be specific! After watching my father pass from terminal cancer, at home, kept comfortable and able to go gently. It helped me decide what I was willing to allow. Please consider making someone other than adult children your medical proxy, I chose my brother because I know he will be able to follow my wishes.

    1. Yes, and who you pick is so important! If I could offer one thought that I realized after watching a family situation, that is….don’t pick a hoarder (or a collector-type) to be your medical proxy.

      I watched one relative (“Relative A”) be pretty bedridden/drugged up/semi-comatose, and “Relative B” was the one in charge of his medical care. Relative A was really having negative quality of life, and Relative B could have stopped one medication and that would have most likely shortened the suffering. Relative B wouldn’t do it.

      I spoke with Relative B about this, and the response was basically that she didn’t want to make the decision that would ultimately kill Relative B. It was a “I couldn’t live with the guilt,” thing. So the suffering went on. For 14 YEARS.

      I thought about Relative B, and she is a kind person, and extremely caring, so I was trying to figure out what was going on, besides the guilt, and I realized that she is a hoarder, very mild case, but her house is very junky and all that. She’s also an incredibly social person who knows half the town–and really cares about all those people. I realized she’s a hoarder of people, of friendships–she’s a social hoarder. And Relative A was part of her hoard; she couldn’t let him go–not as long as modern medicine could keep him on the shelf.

      I suppose the converse may be true, if you pick somebody who throws everything out, you may wind up with someone giving up on you too soon!

  4. Unfortunately almost none of us is going to be granted a “good death” as per the statistics. I recommend “How We Die” by Sherwin Nuland for those who want a deep insight of what’s ahead for most of us. And also by Derek Humphry’s “Final Exit” is a worthy read for those who want to leave nothing to chance.

    1. Yes Nuland’s book is excellent. Eye-opening as well into the physical details of how our bodies acutally shut down – the heart, lungs, etc.

  5. Thanks Mark for this post. Apparently book recommendations are in order. I just finished reading Caitlin Doughty’s “Smoke Get In Your Eyes: and other lessons from the crematory” which give a poignant and also humorous look into the death industry from an insider. End of life planning shouldn’t end with medical decisions but should also include the post death side of the picture, regardless of your spiritual beliefs, someone will decide what to do with your remains and where to put them. I personally see no reason why one would make well reasoned decisions about their diet and lifestyle only to give up that choice for one’s remains. Caitlin and The Order of the Good Death also delve into how preparing the body of a deceased loved one affects our grieving process and how much the modern funeral industry have screwed this up and contributed to our culture’s fear of death. Great read!

    1. I had to prepare a close friend’s body after death. She was a buddhist nun and I washed her and dressed her in her habit to lie in state before cremation. It was one of the hardest things I’ve ever done and required some pretty earthy activities relating to the medical hook-ups that the hospice people just left in. I am a Catholic but I read up on buddhist beliefs about the body (not of much importance) and also read about the hygienic stuff. Another friend called me later and said she had just gone to a workshop on home burials. Wish I had had that workshop.
      I also had to design and arrange a memorial service because I thought it was important for her minor children and the rest of the family was completely dysfunctional at this point.
      It made me glad that my family won’t have to think up this stuff – just give me a traditional Catholic funeral mass. But, I did decide to figure out how I wanted to be buried in the most environmentally responsible way. I got a brochure from some monks who make pine boxes and I circled the one I wanted and put it in a file, I looked up an environmentally friendly cemetery here in Austin where you can be buried with no embalming fluid or anything and I told everybody so they would not have to spend a lot of money or wonder what they should do. I gave them no choice.
      Everybody should look up these new conservation “cemeteries” where you are buried directly in the ground, often in a wetland area, with no casket or headstone. It is a great way to protect wetlands. We have one here in Texas too.

  6. So now I am waiting to see an article on Grok politics…like how Grok would view the political world we live in…. 🙂

    1. Seems to me it should be tribal cooperation and respect for personal autonomy.

      1. In that respect, this website could have just one message/post…
        FOR BEST RESULTS: EMULATE YOUR ANCESTORS…(you idiots)

    2. Haha. Please don’t open that can of worms. Last week was bad enough! My parents were brought up to avoid discussions of religion and politics in social situations and I think that might help ameliorate the current nasty, negative, suspicious polarization of our culture. That and not watching the news…

      1. Funny, but I was just yesterday thinking about trying to not watch the news…I mean it annoys and disturbs me on almost all levels….local and
        national….but how can I do that?

        1. I like that magazine, The Week, cuz it is a clearing house of lots of other media resources and you get more than one side. I just want to know enough to vote responsibly. I’m also on a few email lists from places I donate to and trust. They let me know when to call my congressman! My favorite charity right now is Survival International which protects Hunter-Gatherer people and their shrinking homelands. It is really cool because it also protects rain forests and human intellectual sources about how to live on the planet. They tell me when to write letters to the Brazilian govt. or whatever. Then I TRY TO FORGET ABOUT IT.

        2. Another vote for The Week magazine and they also do daily updates into your email inbox.

  7. I came across a book/pdf online called “Hellstorm” by Thomas Goodrich. I was unable to finish it as I found it too disturbing, but it definitely throws a different spin on “planning” for the end!

  8. For all the other groks you leave behind, please get an estate plan before passing. A will does not avoid state probate, but a trust does. Could save thousands of dollars in court fees and reduces stress in already difficult time.

    1. …and let your loved ones know WHERE IT IS! I had a F-I-L do all his final paperwork on Legal Zoom, and that was THE LAST PLACE we ever dreamed of looking for it–online. After scouring 4 file cabinets, 2 desks, and speaking to every known relative of his, we got the brilliant idea to search his computer. After visits to various online will-making sites, we finally found it all at Legal Zoom.

      Until that time, we never even knew which of his boys was to be executor.

      1. I concur.

        Copies of all important documents should exist in multiple places. Insurance documents, prescriptions, titles, deeds, all should be in printed format in an emergency folder in your dwelling for when you have to get out of dodge quickly. Think natural disasters like the San Diego fires, earthquakes, hurricanes, etc. can really cramp ones lifestyle.

        Second: Have a lawyer store your documents outside your living area

        Third: Digital copies encrypted in a secure cloud.

        Secure redundancy is worth paying for,

      2. Absolutely. I work for a life insurance company, and we get the “hi, did my deceased relation have a policy with you guys?” phone call all the time. Sometimes they found an old policy from 20 years ago while going through the deceased’s stuff, sometimes they just recall the person saying they had a policy with our company and don’t know anything more about it, sometimes they only find out about the policy when they see the premium bill in the mail or see the automatic draft on grandma’s credit card or bank account.

        Don’t hand over money to the insurance company for nothing – tell your family what insurance you have and where to find it if something happens to you!

  9. Great article! And thanks for the book recommendations in the comments. I think about this issue often even though I’m only 46. My hope is to be ‘happy healthy, happy healthy, dead.’ My grandfather had a fairly drawn out death and it just hurts my heart that such a wonderful, giving, loving man had to be in so much pain and inconvenience at the end of his life.

  10. Up until January 1st of this year I had a rapidly approaching expiration date. I had late stage Idiopathic Pulmonary Fibrosis. Basically my lungs were turning into raisins. Following the Primal Blueprint kept me lose the weight necessary, and kept me healthy enough to survive the bilateral lung transplant I received on Jan. 1st.

    My father passed from IPF the conventional way. In and out of the hospital, spending periods of time on a vent, and suffering. My Sweetie and I made the decision that my death would be handled differently. We prepared as much as possible for potential that I would not receive a transplant, or that the transplant would be unsuccessful. The only time I would go on a vent would be if there were the potential of still receiving new lungs, or as part of the transplant procedure. We researched and chose a local hospice, and let the family know our intentions.

    Now that I have new lungs, my expiration date is no longer set. My Transplant Team and physical therapist are all very happy with my recovery to date. I was one of the fastest people ever to leave the hospital after the procedure and even though I did go thru on rejection episode, I am still ahead of the curve in regaining strength and endurance.

    There was an interesting study that compared Hospice Care with medical intervention to maintain life with IPF patients. The study found that those who chose Hospice actually lived longer with a much better QAL than those who chose the hospital.

    I have to credit an awesome transplant team and the PB with the quality of life that I have today.

    1. Must feel great to be given a “second chance”, I am guessing that your a savouring life a lot more now as a result ?

      1. I am savoring life much more now that I have a second chance at it. Something as simple as breathing normally is a blessing. I breathe much better now than I have in over a decade.

        Something that should be mentioned when talking about end of life planning is the opportunity to donate life. Organ donors and their families save lives and help so many others.

        Not a day goes by that I don’t think about my donor’s family. I have to do best for these new lungs. A family lost a loved one on NYE and will never celebrate the New Year the same again. They made the decision to share life with me and many others that night, and I owe them the best effort I can give.

        1. Best wishes to you. I knew people with cystic fibrosis, so I have an idea of how you were pre transplant. Registering for organ donation is something anyone should do when they can. Sadly I have had to come off the register (for blood donation as well) as I have cancer, but if I get ‘cured’ I might be allowed to donate blood again in a decade or so, who knows?

  11. Well, I believe it to be very selfish when family members try to keep loved ones alive for too long. Having been by my fathers side during a week of hospice, compared to my mother in an ICU full of 20 tubes and futuristic machines, the hospice way of dying was beautiful by comparison.

      1. Yes, that was a total debacle. None of us want that kind of end for ourselves. It’s important to get these things in writing, preferably through a lawyer, instead of just leaving everything to chance.

        My uncle was in hospice for a few days before he died. Not only did they take wonderful care of him, they also have people who will handle funeral service arrangements at a time when the next of kin might be too upset to manage those things.

  12. A paleo/primal way of dying would be falling of a cliff while being chased by a jaguar.

  13. Growing up, both of my parents worked as critical care nurses, and they would talk with a combination of disapproval, shame, anger, and despair about patients who were being forced into prolonged life. I didn’t understand them – come on, weren’t they supposed to care for people, weren’t they supposed to be keeping them alive, how horrible were they to want their patients to die?? – until I started working as a CCU nurse as well.

    It happens so often that people either don’t understand what goes into life-prolonging medical interventions or don’t realize how rare it is to obtain the same quality of life as before from these interventions. Even when patients are educated and make end of life decisions, I’ve seen many living wills overturned or healthcare POAs making decisions that aren’t in line with the patient’s wishes. Occasionally in these instances, an ethics committee is called to determine what would be in the best interest of the patient, but those processes take time. In the meanwhile, I’m left forcing procedures and interventions on someone who I know did not want them. Many of the interventions we do appear terrifying to someone who isn’t mentally aware enough to understand me when I explain them. And some are painful. Patients fight tooth and nail against them (I’ve been punched, clawed, and bit), but because they are not considered competent enough to make their own decisions, I have to keep doing it. Some patients end up in restraints at the end of their life. It’s a terrible situation.

    1. Thanks for your comment. No wonder so many older people avoid doctors and hospitals as the end of their life approaches. They are terrified of them. We need to have more control over our own demise. Hospices seem to be a better solution for those of who just want to check out peacefully. I’ve never heard of any forced interventions being done to those in hospice care.

  14. Well said today, Mark.
    Everyone should talk to their family/loved ones about their wishes in the end. (Put it in writing & be sure to consult an estate attorney if you are talking about assets and not just end of life & funeral directives.)
    It’s not a comfortable conversation to have because it’s not a pleasant topic. (My husband and I have had this talk, and we’ve had it with our parents- about them & about ourselves in the unlikely event they should survive us.)
    Ultimately, it’s more comforting to know you have honored your loved one exactly as they expressed themselves than making guesses at their wishes in the midst of grieving.
    Thank you for the reminder.

  15. If you or a loved one is diagnosed with a terminal illness, GET HOSPICE AS QUICKLY AS YOU CAN. The hospice providers will provide all sorts of support. Too many people wait until a few days, or hours, before death.

  16. One of my neighbors across the street is in her own bed, in her own home, doing “home hospice” because she’s dying of lung cancer that went to her brain, and spawned 5 brain tumors. She herself was a geriatric nurse, and helped people go to their ultimate destination from their nursing home beds. Now it’s HER turn.

    I go over there and help out about 2-3x weekly, because someone needs to care about the caregiver(s) as well as the dying. The caregivers have doctor and dental appointments, too!

    This marvelous dying woman is teaching me so much about bravery in the face of death, accepting mortality, and how to die with dignity.

    1. One of her visiting nurses brought up the fact that we need to get back to multi-generational households, and generational care if we’re ever going to get a handle on end-of-life expenses. She said, “the feminist movement decimated the familial handling of death.” It decimated a lot more than that– births, for example.

      I mentioned to her that if medical school curricula doesn’t do something to improve the nutrition education, pileup on the death end of the scale is only going to get worse, and most death could be delayed or avoided altogether when proper nutrition is applied. It should also be used as a FIRST line of defense, and not a glued-on afterthought. This would help alleviate the crushing burden of geriatric or hospice nurse shortages that she seemed to be so worried about. Still dying, yes, but without the co-morbidity we see today.

      This dying woman got her second wind at age 50, and became that geriatric nurse. I have a passing interest in medicine, but I may be getting enough hands-on training to do more, like maybe follow in her footsteps…but I’d like to do things in a less-technologized way (like we used to).

  17. Also please check out The Conversation Project (http://theconversationproject.org) for help on HOW to start talking to your family, parents, and/or kids about your (or their) wishes on what they would like the end of their life to be like. Sometimes folks will tell their doctor (also important to do!!!), but he can’t over-ride the wishes of the family.

  18. Thanks Mark,

    Last weeks Primal Fear of Dying post made me think that it is about time I think about estate planning. The procrastination post two days ago was a perfect explanation as to why I have put off this responsibility to my family. Today was the final harbinger of my mortal reality. I will be making an appointment with my estate planning contact today. When that is complete, I will have no excuse to resume spearfishing in shark infested waters and other forms of life threatening recreation.

  19. One thing I would like to mention.
    I’m certainly not saying all caregivers are thieves, they do heroic work, but as a note of caution….If you have hired caregivers for a ill or dying friend or relative, you need to remove anything you value out of the house that can be easily taken. We had several women take very good care of our mother but they also took things we valued from the house, even though there were other relatives living in the house at the time. A quilt my mom made, some jewelery, etc.

    1. Agree. My mother was a geriatric nurse who worked at a retirement community. Whenever anyone died (or needed to go to the hospital via ambulance), she grabbed their rings and other jewelry because they often end up “getting lost, somehow” during this process. She then gave it to their surviving kin.

      1. Hide the meds except what needs to be administered during a shift. We had a caregiver stealing my mother’s meds. We caught on when the pills started disappearing and she kept begging for extra shifts. We fired her of course. I should say we also were so fortunate to have absolutely wonderful caregivers. I believe the vast majority fall into that category. They are highly underpaid Angels.

  20. In the event a family member wont tell me what they want,and my ex refused to let me know, I will do for them what I would do for myself. If you make your own directive have it notarized at your city courthouse cause they don’t accept the UPS store. I researched funerals before and you will be surprised at what you think is required, like in most states you don’t have to be embalmed, and you can apply for a permit to bury a loved one on your own property.

  21. My mother died at home, in her own bed, in her sleep, just four days short of her 99th birthday. This was no small achievement! I was her health care agent, and she and I had many conversations about how she wanted to die. She also was clear with all the other significant family members about her wishes. I spent a lot if time researching end of life issues, various medical procedures, and how to stand up to doctors who wanted to do “their thing” rather than what she wanted.

    Unfortunately, a living will is only good if the doctors are willing to follow it, and they aren’t always. Even better is a POLST (Physician’s Orders for Life Saving Treatment). California has such a form, as do some other states, though they may use a different name. The POLST gives doctor’s orders to first responders and ERs about what is and is not to be done. It’s not optional. Comfort care only is one of the options. If you wind up being hauled off to the ER without a POLST, a lot of things can be done to you before anyone gets there to advocate for what you want, or before they can find time to look at your living will.

    The most important person, in my view, is someone to advocate for you who is smart, tough, unafraid, and willing to ask the pertinent questions of medical professionals: what are the outcomes percentage wise, what will after effects be, is the procedure appropriate for a person of this age in this condition and if so, why, just for a few examples.

    There’s a wealth of information and thought about these issues out there. What got me on my way was Knocking at Heaven’s Door by Katie Butler. Googling Atul Gawande will also turn up a host of books and articles written by him and other MDs to guide us toward more humane deaths.

    Sorry for the length.

    1. @Rowdy,

      Is this the one page, large print hot pink form with boxes you check? (hot pink so it stands out; one page so medical people will actually look at it)

      1. I’m not sure what it’s like in other states, but in my state I’ve seen it on gold paper and hot pink. There are a series of boxes that the doctor checks depending on the patient’s wishes. My mom’s was for comfort care only and had a DNR order. She also carried a copy with her and had a medic-alert bracelet alerting first responders to look in her wallet for the POLST. In their homes, people put them on their fridges, and first responders are supposed to check there.

        1. I should say that the POLST is usually filled out by the person’s regular doctor, who knows them well, one would hope.

          One smart strategy is to get yourself under the care of a geriatrician when you get older. They seem to be much more interested in quality of life rather than the latest in interventional medicine. And hospital nurses are a really good source of information about the realities and practicalities of certain procedures.

  22. My own mother died from a brain tumor 3 years ago, and she was provided hospice care in her own home. Please understand, this is not the rosy ending so many people think they will have when they experience hospice. Those drugs they use are brutal to the body, and cause all kinds of terrible side-effects that make the last weeks very miserable for the patient. Watching my mother go through that hell is the worst thing that has ever happened to me, and I still can’t conjure it up without becoming physically sick. It was not an easy death!!
    It literally breaks my heart that our society cannot get it through its thick skull that human beings have every right to choose how they wish to go. Death management should include a variety of options including something quick, like lethal injection and not just mind numbing drugs until the disease kills you. This world is really a piece of work…..Evolution just didn’t go far enough in the brain development department or this wouldn’t even be a discussion.

  23. what was the gldiator quote: “Sadly, we cannot choose how but, what we can decide is how we meet that end, in order that we are remembered..”

  24. I found the worksheets here incredibly useful and thought-provoking – although I notice some resistance on my part because I’ve put off going through the process for well over a year!

    http://www.goodendoflife.com/

  25. A very important subject Mark! Well presented too. Thanks.

    Several things come to mind:

    First: Songyal Rinpoche’s “The Tibetan Book Of Living and Dying”. The intro alone is worth the price of admission.

    B. Along another tack is Stanton’s “Gnoll Credo”. Short form: We Live, We die. Get over it.

    3. It is little discussed but mostly true that the ideal of dying peacefully in bed surrounded by loving family is mostly a myth. The way in which the body wears out makes such a storybook ending highly unlikely. Wanting to be conscious but pain free during death is difficult to achieve from all I have heard. Maybe the phrase ‘dying well’ includes an embrace of the pain and fear that accompanies this momentous transition. I guess I’ll find out.

    iv. On the totally off the wall side of things my friends and I all seem to share a fear of ending up drooling on our shirt fronts as we are cared for by a gigantic and uncaring medical system. As a hedge against such a fate there is opportunity to help one another out the back door to a passing that can take place in a natural environment. I cannot comment on the legalities of such an act. Maybe some kind of mutual defense fund is needed. Just a thought on another approach.

    Live well all.

  26. I have another perspective on this. My mother was diagnosed with an aggressive brain tumor at age 73. She loved life and wanted to fight. Her neuro-oncologist said he would support her, despite the odds. Unfortunately, she suffered a severe seizure and ended up in the hospital. In the hospital, we were bombarded by doctors and nurses refusing treatment, encouraging us to sign DNRs etc, and advising us to seek psychological help so we could “let her go.” When she recovered against all odds, they called her “the miracle lady.” It wasn’t a miracle in the sense they meant. Statistically some people do recover from massive seizures, some people do respond really well to brain tumor treatment, and some people live much longer than the statistical average (by definition). One problem with making end of life decisions based on doctors’ predictions is that doctors may know the statistics but THEY CAN’T PREDICT WHICH PATIENTS WILL BE OUTLIERS. I am a member of a brain tumor support group that has many long-term survivors. Every single one of them was told they had only months to live. Every one of them wanted to fight, like my mother. Many people might not want to fight, and that’s their prerogative. But let’s continue to respect those, like my mother, who wanted to take a shot at being the outlier who gets to see her grandchildren grow up. In the end my mother passed away from (hospital-acquired) pneumonia in the middle of her tumor fight (hospice was great, in our experience). I could go on and on but I will leave it at this: if the medical schools would teach nutrition and critical thinking, if the FDA would lighten up on restrictions for terminally ill patients (compassionate use of off-label drugs), and if doctors and hospitals weren’t so terrified of the plaintiffs’ bar (malpractice suits), more people would survive terminal illness. From an institutional perspective, more old people is not desirable. If you don’t believe me, ask Dr Emannuel what he thinks about it. He’ll be happy to back me up. So my hope is to be Primal and stay healthy for as long as I can!!

  27. Thank you for a great post Mark. As a critical care nurse I often take care of patients with devastating brain injuries and we do many painful and invasive procedures to try and save their lives. It is so important to talk with your family about how you wish to die and what procedures you want done to prolong your life. Most of the time when we meet with family members to discuss their loved one’s prognosis and continuing treatment they have no idea what their loved one would want and end up doing what they want. The biggest emotion I see is a feeling of guilt that they are killing their loved one by removing life support/ending treatments because they are not sure if that is he what they would have wanted. Tell your family what you want and legally appoint someone who will follow your wishes! It is so much easier for the family when they know they are doing what their loved one wanted.

  28. I found Swiss Psychiatrist Elisabeth Kübler-Ross in her 1969 book, On Death and Dying, (inspired by her work with terminally ill patients) to be a good introduction to the process of dying. Thank gosh for Wiki (from where I just copied this), I would have never remembered her name and her book is packed away in the basement.