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Death is inevitably encountered by every physician at some point and by every human. Then why aren’t we talking about this routinely? I know your doctor should be bringing this up. The funny thing is, as health care providers, we are still fumbling with the topic ourselves. We are not routinely trained to talk about something we are supposed to prevent. Until our system incorporates Death as a mandatory topic to be discussed, I urge you to be proactive.
If we work so hard to create a life we love, why not consider how we would like to die. Life and Death both can turn out vastly different from what we expect, yet we make every effort to create a life we value. If asked how one would choose to die, the most common response is, “I want to die in my sleep, at home, surrounded by my loved ones.” Yet, hospitals are proof that this doesn’t always happen.
People want their health care decisions to reflect their core values. When a family member is hard pressed to make decisions at the end of life (for a patient unable to do so for themselves), a prior discussion can at least point them in the right direction. Better yet, a “living will” can give specific guidance about our preferences regarding treatment choices. Appointing a “POA for Health” or “Health Care Proxy” can ensure a loved one is entrusted with the responsibility of making decisions that mirror your values, when you cannot do so yourself. In the United States, where there are clear-cut guidelines and laws in place, it is only a small number of patients (usually the chronically ill) who actually make their wishes known. In India, patients rely on the trust, relationship, and conversations between the doctors and family to guide care at the end of life. Legality is still vague.
Expression of grief by patients and families can take on many forms. Slowly accustomed to the spectrum of human grief, I have learnt to recognize patterns — guilt and making up for lost time by continuing life support for a helpless family member, even when there is little hope; the inability to face one’s own mortality by asking for every medical test and intervention available; families stating that their loved one is a “fighter” and wouldn’t want to ever “give up”; interpreting the preparation of end of life care as pulling the plug and giving up. For me, dealing with the strongly-ingrained belief “Death is Failure” is both draining and emotionally exhausting.
Is fighting a battle at the end of life a courageous struggle or a resistance, lack of acceptance, and fear of facing the inevitable? We face these issues because we never ever talk about death until we absolutely have to. Maybe, even if we did make every effort to do so, it would still be incredibly painful and hard. After all, it is difficult to face our own mortality, let alone prepare for such a final event in reality. We can at least begin to try.
Historically, one might have gone through the dying process at home, either due to old age or sickness. Increasingly, this is becoming the exception rather than the rule. Most people are rushed to the nearest health care facility at the earliest sign of pain and distress.
We draft wills for our real estate and valuables. What about our most valuable asset, our body, the only constant space we inhabit throughout our lives? When we make the effort to eat healthy and work out, we invest in our health, quality of life, and living well. When we discuss death, we learn about palliative care and learn more about the choices available at the end of life. We invest in our end of life experience and dying well. Wellness is more than living well, it includes dying well. The choices we make will, to a large extent, determine both our quality of life and death.
My job is to ease suffering, as a health care provider, not simply “Save Lives”. I am thankful and relieved, when patients die well under my care. Palliative Care, an emerging field, is providing non-aggressive care to patients who opt for it.
A large chunk of my day involves talking with dying patients and their families. Even though we save lives, it can be far more gratifying to care for someone dying well with grace. Much more than it is to connect more devices to a survivor of resuscitative efforts with little hope of meaningful recovery. Doctors are trained to alleviate discomfort and resuscitate those very ill. Doctors cannot prevent people from dying. Globally, the phenomena of death is not something we have been able to accept gracefully.
It is a privilege to be by the bedside of someone dying. It is humbling to have family meetings that help loved ones better understand what the prognosis of a critical illness might be. It is enlightening to learn how my patient lived their life and how they might want to die. It is a joy when I am able to provide care that is in sync with the core values of my patient. It is not giving up hope. There is dignity and grace in dying well. But first let’s talk about Death. Please!
Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
No one has said this better. So many good quotes. I”ll use a few in my lectures. BIll Simmons
It is this mindset of conversation that I’m working with hospice nurses to create a workshop I’m tentatively calling: Mortality: The Final Journey with the subtitle “Making friends with Death.” As a Death Doula, talking about end of life issues with family and loved ones is crucial to making sure that your death is as you lived, a good death.
I want to distinguish death from “dying.” It’s the latter we should be talking about. Death is as unknown and unknowable as it is inevitable. I don’t know much I can say about it and once it is achieved, there’s absolutely nothing for the deceased to do. Dying is the last stage of life, is knowable and to a very great degree, known. There’s a lot to be said and done, both in preparation for that stage and during it. A semantic distinction. But perhaps useful?
A research paper in Mortality journal, End-of-life offerings in US medical schools: 1975-2020, reported that “A noticeable difference in emphasis is obvious as care now plays a more significant role in medical training than previously, thus making modern medicine not only about cure, but more about care than was previously emphasized. Communication with dying patients and families, analgesics for chronic pain, and advance directives all are covered in over 90% of schools today. The current emphasis on EOL care, not just disease management, is increasing …” I hope this leads to Good Deaths for more people.
Thank you for bringing this topic up. This is a very delicate issue if there is no will in advance, which puts an enormous strain on medical staff and family. Usually, when the time comes, families are not prepared. Emotions and stress are very high. I question if they are making the right choices at the last minute. When all we have to do is die, what better gift for our loved ones than to prepare a will and advance directive so your last wishes are honored?
My son has severe autism and I thought I was automatically his guardian. I was wrong. I had to go through the course to get guardianship, and I won. So shortly after this battle, the State told me that I needed to create a trust. It was a long battle, but I did it. Right when I thought the storm settled a bit, I discovered I was wrong again. They recommended that I buy a plot and prepay the burial and service all in advance, which is tough. I felt numb and angry because felt like this was all dumped on me at once, and my son is still alive. It was the hardest thing for me to do, planning my child’s service and guessing what he would want; he is ecolatic and thirty. I am suppose to go before my child. But I did it and I feel fortunate that other people helped me through it. Let me tell you — there is no right time, and it was better to be prepared so my other son wouldn’t have to make these decisions. I love my children and sparing them from making last-minute decisions provided some peace. I feel I did the right thing. We all think we can handle funerals and services, but it is different due to stress, conflict among family, roller coaster of emotions, and pure exhaustion, grief, and sadness due to loss. Definitely be prepared.
Thanks again for bringing up such a taboo topic. I think more awareness and time could help greatly in a difficult time.
I appreciate Ron’s attempt to limit discussion about death because of our apparent total lack of subject knowledge and also the assumed impossibility of obtaining any. However, that is not to say we can not or should not make a rational, demonstrable, replicable supposition or two. For instance, energy in our World can be neither created nor destroyed. If we place a stick in a fire and burn it, that destroys the stick but the process creates heat/energy which disappears. The analogy for humans is that when we die the energy in our brain is not destroyed—it just goes elsewhere.
During the past century neuroscientists have realized that our physical brain contains a mind which is not physical. It is energy, and when the body and the brain die, that energy leaves our body, but we do not know where it goes. I think that simple, demonstrable, replicable fact not only legalizes but makes further investigation and discussion about life after death absolutely essential. Dr. Wilder Penfield is one of the brain surgeons who has written on this topic. What about it Ron? Where does that energy go, and in what form; etc., etc?
I have no ideas where it goes and know of no scientific way to investigate that. Moreover, I know of no scientific proof of a mind separate from a brain. Insofar as I know a mind is a discrete organization of physical substance and energy. These resources become disorganized during dying. You are of course free to investigate whatever you like. I think it’s nonsense.
I appreciate Ron’s response and agree that the concept of mind is vague, but the fact that it is energy is not. That is scientifically provable. So, here we go with the question of what happens to that energy when a person dies, since it is scientifically provable that energy can be neither created nor destroyed. Maybe it is “out there” discombobulated like Ron says, but it is still out there somewhere doing something, forever! I find it extremely interesting that in the Gospel of Mary, which is a non-canonical text discovered in 1896, Mary tells Jesus that she saw him in a vision, and Jesus responds by saying that where the “mind” is there is the treasure. There are many things about Jesus that I do not accept, but that alleged comment by him really gets my attention, and I totally agree with it! Perhaps some of our readers more fluent in Greek and Hebrew than Ron and I can chase that very interesting biblical rabbit out of the briar patch so we can get a shot at him.