The Amateur's Guide To Death & Dying
Enhancing Life Near Death
By Lion’s Roar Staff
[I]n this video, Ostaseski talks with Lion’s Roar’s Lindsay Kyte about the lessons he’s learned at the bedsides of thousands of dying people, his new book The Five Invitations, and the future of end-of-life care.
By Jennie Dear
[N]essa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”
I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”
There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.
For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.
The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.
The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”
E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis … Whether by illness or accident, our potential trajectory is suddenly changed.”
In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”
In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.
Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”
Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.
The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”
But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.
To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”
Complete Article ↪HERE↩!
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[F]or one month this spring, my job as a senior resident in a large teaching hospital entailed racing around the hospital, managing patients who had rapidly become sicker; I wore running shoes every day. I also led every code, orchestrating a team of doctors, nurses, respiratory therapists, and pharmacists in an effort to resuscitate patients after their hearts had stopped. Some of the very sick patients under my care had do-not-resuscitate orders, but most didn’t. For them, my team and I provided whatever treatments we could.
One night, a colleague asked me to see Mr. S, a middle-aged patient with worrisome vital signs.
Arriving at his bedside, my colleague, Dave, and I saw a sluggish, pale man — he’d been in the hospital for almost a month with life-threatening infections. He answered my questions with brief but cogent statements until he suddenly stopped moving, his eyes staring blankly at the wall. I felt for a pulse. There wasn’t one.
“Call a code blue,” I said as calmly as I could, referring to the all-hands-on-deck alert that a patient’s heart had stopped. Dave began doing chest compressions, pressing rhythmically and firmly on Mr. S’s chest, taking the place of the heart in circulating blood throughout his body. I stood at the foot of the bed as the resuscitation team rushed in. A breathing tube wouldn’t pass down Mr. S’s windpipe, so a surgeon performed a cricothyrotomy, cutting a hole in the throat so we could insert a tube to help him breathe. As we paused chest compressions to check for a pulse, 15 wide-eyed faces looked to me to tell them what to do next. Although most in attendance had been involved in attempts to resuscitate patients before, the adrenaline-fueled brutality universal to codes is nearly impossible to get used to. Mr. S’s heart still wasn’t pumping, so we continued.
A few moments later, his arms flailed, thanks to the blood the chest compressions were sending to his brain and the rest of his body. The intern who had taken over for Dave paused in alarm. Another resident reassured her this simply meant her compressions were strong, and urged her to continue pushing.
After more compressions and injections of medicines to bring up the blood pressure and restart the heart, Mr. S’s began to beat faintly. Stable for the moment, we moved him to the intensive care unit. His prognosis was grave, so his family opted against future resuscitations. Later that day, his heart stopped again — that time forever.
We may have revived Mr. S, at least for a few hours, but I’m not sure we really helped him. Were our actions what he truly wanted?
Most people whose hearts suddenly stop don’t survive. Of the more than 200,000 Americans every year who go into cardiac arrest in the hospital, only about one-quarter make it out of the hospital alive. Of those, nearly 30 percent are seriously disabled.
Doctors often don’t adequately convey these grim outcomes; many patients remain falsely optimistic, tending to overestimate their chances of surviving a cardiac arrest. And few people understand what the resuscitation process truly entails, and how these efforts often lead to a painful, undignified death. Recent research also shows that patients and caregivers tend not to be on the same page when it comes to what level of disability or pain might be acceptable to a patient in the future, including after a code.
There’s got to be a way to close these gaps.
The solution starts with a conversation between doctors and their patients about what the end of life might look like. In an effort to make these discussions more common, Medicare now allows doctors to count such discussions, known as advance care planning, as a topic worthy of a doctor’s visit — and of reimbursement under a new billing code — if patients are open to it. Since this change took effect Jan. 1, 2016, nearly 575,000 patients and 23,000 providers have participated in such reimbursed conversations. Of course, there’s plenty of room for improvement: Although that’s almost twice as many conversations as predicted by the American Medical Association, it’s only 1 percent of all people enrolled in Medicare.
It may seem ridiculous to need to pay doctors to have these conversations. Yet given the myriad demands on doctors’ time, making this conversation reimbursable puts it on equal footing with measuring blood pressure, discussing an irregular heartbeat, and other topics long considered vital parts of a doctor visit. These conversations aren’t simply something that are nice to do; they are an incredibly important part of the way patients live and die.
Yet this initiative faces opposition by lawmakers whose fundamental misunderstanding of advance care planning risks seriously harming patients. One such example is the dangerously misnamed Protecting Life Until Natural Death Act, proposed by Rep. Steve King (R-Iowa) this past January. The bill calls for excluding end-of-life discussions from Medicare reimbursement, discouraging doctors from having these important conversations. That’s a problem because in the American medical system, the default position is to do everything possible to revive a patient unless he or she requests otherwise. And in reality, there’s nothing natural about a death prolonged by painful chest compressions, endless needle sticks, and a breathing tube forced down the throat, especially when such efforts are usually futile. In fact, some experts have proposed changing the term “do not resuscitate” to “allow natural death” to better reflect the realities of end-of-life care.
There’s no doubt heroic measures save some lives — but they aren’t what everyone wants. That’s why end-of-life discussions are essential for protecting patients and empowering them to make clear, well-informed decisions that let doctors do right by them. It’s absolutely vital that we keep these conversations going.
Complete Article ↪HERE↩!
[I]t’s hard to talk about death without going into the history of it. We’ve talked endlessly on this blog about the ways in which death has changed and evolved over history. We once knew death intimately: we washed the bodies, buried them ourselves and mourned openly and loudly. However today we are, as some scholars would say, largely a death denying culture. The tides are changing and while the chances of us handling the bodies of our loved ones are slim, our awareness of death and dying has been on the rise. Fuelled by popular books, movies, TV shows and personalities, death and death positivity are on the minds of many people. To help foster this much needed change, we present to you the top 8 websites promoting death awareness!
Modern Loss is a place to share the unspeakably taboo, unbelievably hilarious, and unexpectedly beautiful terrain of navigating your life after a death. Beginners welcome. This should say everything you need to know about this wonderful and informative website started by Rebecca Soffer and Gabrielle Birkner. Filled stories of grief, mourning and death acceptance, Modern Loss is a repository of stories, essays, resources and information about dealing with loss and picking yourself up again!
Founded by mental health professionals with 10+ years of experience in grief and bereavement, WhatsYourGrief.com is an excellent resource for anyone dealing with the loss of a loved one. Grief is a complex emotion but one that is completely natural. Rather than try and rush of process of bereavement, WYG encourages their readers to work through their feelings in positive, long lasting ways. Well written blogs, grief resources, how-to’s and more.
Interested in a first hand account of life in the funeral business? Connecting Directors is a great place to start. It is a collection of news, blogs, articles and marketing information tailored to the funeral profession. While some of it may not be relevant to your interests, there is a lot of great information there(plus we are featured there quite often **cough cough**). Started by Ryan Thogmartin, this website reaches thousands of death professionals and gathers articles from a number of sources.
We couldn’t be bigger fans of Death Cafe! While the internet portion of Death Cafe is only secondary to the actual events, it is a great place to connect with a death positive community. Death Cafe’s are informal meetings that happen all over the world where people get together and talk about life, death and everything in between. Chances are there is a local Death Cafe chapter in your city(and if not, you should probably start one). We have been to two events held by our local Death Cafe and they were incredible! Expect tears, laughter and the unexpected.
A newcomer relative the rest on our list, Death Maidens is important for several reasons. First, it is connected to growing death positive/death conscious movement. Second, it highlights the important, historical and growing role that women have played vis-a-vis death and dying. We often forget that women before the 20th century played vital functions in death. They washed and dressed bodies, they were the public face of mourning and they knew death in a way that few of us do today. We are really looking forward to some great and informative content!
It would be no exaggeration to say that Caleb Wilde is almost a household name. People who are in no way connected to the funeral profession know his website and share his content. A 6th generation funeral director and prolific blogger, Caleb started Confessions of a Funeral Director as a window into the death profession. His blog runs the gamut from humour, memes, short stories, advice and of course, secrets from the world of funeral directors. A must read for anyone interested in death awareness!
Founded and run by Caitlin Doughty, The Order has grown to become much more than a simple blog/website raising death awareness. The order now hosts dozens of members from academics, morticians, funeral directors and artists and is filled with both written content and video content. Caitlin’s well known YoutTube channel, Ask a Mortician, is an informative and hilarious video series. The Order now also runs the largest death positive meet-up in the world, Death Salon. Be careful though as you could get lost for hours on The Order’s website!
The Death Reference Desk is run by professor John Troyer, Deputy Director of and a Death and Dying Practices Associate at the Centre for Death and Society at the University of Bath and Librarians Meg Holle & Kim Anderson. Pulling from their knowledge and experience, the goal of the DRD is to inform the casually interested and morbidly curious alike about All Things Death: the bizarre, the batty and the beautiful, from interesting blogs and recommended books to commentary and analysis of death in the news. This website is an incredible resource for anyone interested in almost anything related to death and dying and best of all, you can ask John, Meg & Kim any question and they will answer them on their website!
Complete Article ↪HERE↩!
By Erin Donovan
[I]n early 2015, my mom was in a car wreck. She sustained extensive injuries and died two weeks later. I was 35 at the time, surrounded by chaos, and had no idea what I was doing.
You hate to look on the bright side of life-altering tragedy, but I’m still so grateful to my mom for having her affairs in order. Because her accident was so sudden, it took a few days to locate her end-of-life documents. Once we did, it felt like there was a shift in my brain chemistry. We now had guidelines to help us respond to this terrible, traumatic event.
A lot of people believe it’s too difficult or macabre to think about, much less plan for, your own death. But confusion, exhaustion, and terror are the norm in the wake of enormous loss. Planning ahead helps reduce your family’s stress when they’re already in their own personal hell.
If you have a contentious relationship with your family of origin, it’s extra important for you to draw up wills and other relevant legal documents. If something terrible were to happen to you, somebody you don’t like or respect but happen to share blood with may have more say than the people who are actually important to you. Paperwork can help prevent that.
Here is an overview of how to prepare for the (inevitable) worst:
Most of us learn about wills from television, though I’m not sure there’s actually ever been a dramatic scene immediately after a funeral where a lawyer sits down with a bunch of people and parcels out the deceased’s belongings.
A will serves two functions:
It doesn’t matter how much or how little a person had in this world. When they die, their assets and debts become the property of “the Estate of [Deceased Person].” An executor of an estate is the person put in charge of making sure the estate is handled properly—which does sometimes come down to parceling out the deceased’s belongings.
You should know that, even if you say “please leave all my money to these people or this organization,” if you die with a bunch of debt, it’s likely the debt will have priority over your wishes.
This document outlines how incapacitated you have to be to let some (specific) person handle your money. Even if you don’t want anyone else to touch your money, consider the logistics; setting up a power of attorney lets someone else sign checks to pay your light bill or rent, for example, without technically committing fraud. (We always forget about the little stuff.)
You have to specifically appoint a person for this role. Once you die this document ceases to be of any value and the executor of your estate takes over.
This document lays out the manner in which you wish to live vs. do not wish to live. These documents vary massively by state. In general, states with Right to Die laws will have more much more detailed requirements. If you draft a medical directive in one state and then wind up becoming grievously ill or injured in another state, they should still honor the spirit (if not the letter) of this document.
I did mine in Oregon. It’s a three-page list of yes/no scenarios. You have to consider your own mortality, but other than that, it’s really not that daunting. All you have to do is express what you’d like to happen to you, should the worst happen.
You have to specifically appoint a person to execute your medical directives as well. A doctor will not look at this document and enforce it based on their own judgments about your condition. So make sure the person you appoint to do this is someone who understands your wishes and respects your values, because this document will empower them to either enforce or override your choices.
A will, a durable power of attorney, and a medical directive should all be drawn up with a lawyer. The people that specialize in this area of the law are called estate attorneys. The estate attorney should be able to tell you upfront how much it will cost to draw these documents up and a lot of times you can work out a payment plan with them.
This attorney will keep a copy of each of these documents in their files. You should also keep copies in a safe place that other people know about and can access should you be in a medical crisis and unable to communicate. It may also be wise to give copies to the people who have appointed roles in your end-of-life documents.
You should have life insurance if you have any outstanding debts or dependents. My understanding is that your life insurance should equal your debt + five years of your salary + your child’s/children’s estimated college tuition, but do your own research on what’s best for you—and do some research on which of your debts are forgiven in death and which are not.
If you have no major debt and no dependents, you could skip the life insurance part, but keep in mind that life insurance beneficiaries can also be parents or other relatives, all of whom could probably use the money—especially if they are anticipating support in their retirement years and/or paying for the cost of your funeral.
Any final lovely words you want to write to the wonderful people in your life? Better yet, any petty stuff you want to make sure you get the legit last word on? Write it in a letter, seal it in an envelope and keep with the other documents.
Accounts: A list of all your credit cards, checking and savings accounts, including where they’re held and branch information if necessary.
Important contact info: The attorney who helped draft your legal documents, your doctor, your health insurance, your pet’s veterinarian, etc. If someone had to suddenly take over your whole life, what do they need to know?
Assets: Retirement accounts, a 401(k) program at your work, any property you might own (with the mortgage holder listed), savings bonds, certificates of deposit, etc. You can leave out the account numbers if you have privacy concerns; what you’re really doing is making a road map for whoever will be handling your affairs.
Debts and bills: Student loans, credit cards, mortgages, auto loans, etc. Don’t forget your rent, utilities, subscriptions, child support, memberships, and donations that auto-renew. List every single thing that bills out of your account monthly, quarterly, annually.
Update this information every time you change your clocks and put the revision date at the top. (Also, change your smoke alarm batteries while you’re at it.)
You can get as specific as you want with this, but at the bare minimum let people know if you want a burial or cremation and where you want your remains to go. (Especially if you come from a large family or if there are any religious or cultural differences to consider.)
Obituaries have to be filed for a few reasons. Many states have public disclosure laws for debt collection that require an obituary. Also, people might want to come to your funeral (or at least know you died) who aren’t in your immediate social and family circles. Draft a super basic obituary that includes where you were born along with the names of your parents, siblings, children, etc. A few broad strokes about your life, where you went to school, worked, what you enjoyed doing, etc.
It’s going to be painful for your loved ones to write about you in the past tense, so giving them a rough draft can be very helpful—especially because the obituary usually has to be written immediately after a person’s death.
Keep it somewhere secure. But let the right people know how to access it. A fireproof safe in your house? Make sure someone knows where the keys are. A safe deposit box? Make sure someone else has access to it. In a folder on your laptop labeled “Death Prep?” You’d better give someone else the password and the file path. Under the floorboards? Whatever, just make sure people can find it and have access to it if you are suddenly incapacitated.
The less mess you leave for someone to clean up, the less you’ll complicate the grief for people who love you. All the secrets you have stashed around your life? Someone has to clean that up. Know that the dead have zero privacy; all of your porn, medical history and drug habits will be 100 percent somebody else’s business now. Appoint an executor who has some chill, and good luck in the next plane of existence.
Disclaimer: I’m not a lawyer, nor a financial advisor. I’m terrible at math and I hate dealing with people. This is not professional advice and you should definitely pay an actual grown-up $200/hour to explain how the basic tenets of our society functions because your pain, fear and confusion is the grease that keeps the ruthless machine of capitalism churning. Above all, do not sue me if you mess up your own life!
Complete Article ↪HERE↩!
[G]enerally speaking, health care is aimed at relieving pain and suffering. This is also the motivation behind euthanasia – the ending of one’s own life, usually in the case of terminal illness characterised by excruciating pain.
There has been debate in Victoria about the drugs that should be used to end life if euthanasia is legalised. So which medications can we ensure would facilitate the best, medically-supervised death?
Medicine as poison
When it comes to the question of which medicines can, or even are meant to, kill us, the most important thing to remember is the old adage:
“The dose makes the poison.”
This concept is one on which the whole discipline of toxicology and medicines is founded. This is the meaning of the well-known symbol of the snake, wound around the bowl of Hygeia (the Greek goddess of health), representing medicine, which you see in pharmacies and medical centres around the world. The intertwining of poison and health care is a longstanding concept in the therapeutic use of medicines.
This is a very intricate science, and the reason we conduct clinical research. We need to trial different doses of new drugs to meticulously establish a safe but effective threshold for use.
In more practical terms, this means too much of any medicine can cause harm. Take, for example, the humble paracetamol. When taken following correct guidelines, it is a perfectly safe, effective pain killer used by millions of people worldwide. But taken in excessive quantities, it can cause irreparable liver damage, and if the patient is not given an antidote in a hospital, could lead to death.
What drugs are used in assisted dying?
The group of drugs most commonly used to end life is called the barbiturates. They cause the activity of the brain and nervous system to slow down. These drugs, used medicinally in small doses, can be taken short-term to treat insomnia, or seizures in emergencies. In different doses and administration techniques, these preparations can also be used as anaesthesia, to make us sleep through surgery.
An overdose of barbiturates is fatal. A large dose will effectively make the brain slow down to a point where it stops telling the body to keep the respiratory system working, and breathing ceases.
Both secobarbital capsules and pentobarbital (usually known as the brand name, Nembutal) liquid – (not to be mistaken for epilepsy medication phenobarbital) have been used either alone or in combination for physician-assisted suicide or euthanasia. They are also used in injectable forms for animal euthanasia.
These two products are tried and tested, have the advantage of years of use with the benefit of knowing the exact dose range needed, and with few adverse effects reported (such as unexpected pain, drawn-out death or failed death).
Their safety and efficacy in inducing a peaceful, swift and uneventful death has been proven around the world. They are the preferred drugs in the Netherlands, Belgium, Switzerland and some USA states where euthanasia is legal.
Other options exist, whether in combination or alone, but have limited evidence of use in euthanasia. Some drugs that cause excessive muscle relaxation and respiratory distress can end life, as can some pain killers commonly used in palliative care.
Drugs can also be used that fatally lower blood sugar levels, cause heart attack, or block messages from the brain to the muscles, causing paralysis.
While all of these drugs are legally available in Australia, they could cause a long, protracted death, with many more side effects that could cause distress and suffering at the end of life. Nembutal and its relatives are less likely to do so, with greater evidence from international practices than any other drugs that can end life.
The ‘best’ death
In Australia, Nembutal and secobarbital can be used for animals, but are illegal for human use. This makes implementation of the newly proposed euthanasia law in Victoria slightly more difficult. The proposed legislation does not seek to legalise the use of Nembutal and its relatives – but suggests a “drug cocktail” be concocted by a compounding pharmacist.
The Victorian government has reportedly approached Monash University’s pharmacy department to research the kind of pill that could be developed if the legislation passes. Therefore, no final description of this product has been released.
Some have suggested the mixture will be in powder form made with pain killers to induce a coma and eventually cause respiratory arrest. It may also use sedatives and muscle relaxants, a drug to slow down the heart, and an anti-epileptic to prevent seizure and induce relaxation of muscles. The constituents and doses are yet to be determined.
It’s difficult at this early stage to predict how this concoction would work and whether it would be easier or safer to use than drugs already tried and tested. This proposed product would need to be tested and results compared, as all new drugs are.
What is needed is a drug or a mixture of drugs that produce a painless, relatively quick and peaceful passing. We do not wish to see further suffering in the form of seizures, prolonged distress and pain. If no solution is certain, it would be wise to fall back on simply legalising what is already tried and tested.
Complete Article HERE!
[A]s organisms that fight for survival, just as other organisms on the plant, a fear of death is built into our psyche. We write about it, we sing about, and Woody Allen obsesses about it. Throughout the ages, civilizations have created various deities to try to explain our origin, our purpose, and our fates when our bodies fail us. As science has evolved, we have learned to worship technology as a new deity that may protect us from aging and our ultimate demise. Despite our growing medical technology, life still has a 100-percent mortality rate. Someday, you are going to die.
Our medical technology sometimes gives us false hope. We pray to the false gods of machines and newer and more expensive pharmaceuticals to stay our execution, often without the thinking about the financial and emotional costs. As a society, we need to be good stewards of resources, as these resources are not infinite. Money that is spent on futile health care could be better used for other things such as alleviating homelessness, treatment for substance use disorder, or perhaps ensuring that every American has a cell phone. What is often overlooked in this discussion is the burden of suffering.
When you are admitted to the hospital, you will often be asked your wishes as far as resuscitation. If you are a 46- year-old otherwise healthy person who is having a heart attack, the answer will almost always be to do everything possible to resuscitate you. If you are 102 years old with dementia and a massive stroke, the answer will probably be to allow natural death. In fact, if I’m the doctor for the latter, I would not ask the family their wishes; I would tell them that it would be medically futile to attempt resuscitation and would only prolong suffering.
In discussing the end of life, the trend over many decades has been toward less paternalism and more autonomy. We encourage living wills and we try to discuss these issues with patients ahead of time. When I was a medical student in an academic university, the discussion was never IF we were going to resuscitate, but what fluids, what size endotracheal tube, and how many medical students could practice procedures before we called the code. Now we are trying more to give the patients and families their opportunity to decide within the setting of their values.
One of the ethical dilemmas in medicine is the balance between autonomy and beneficence. In the United States, we greatly value autonomy in medical decision-making; your ability to make your own decisions about your life, including health care. Built into Western medicine is the idea of informed consent. I offer you medical options and you can choose to take a medication, undergo a procedure, or try your favorite essential oil. I inform you of the options, and make recommendations, but autonomy says that you get to decide if you prefer lavender or vanilla.
Beneficence is a stronger force in other cultures, but it is also ingrained in our medical culture. Beneficence is essentially when your clinician is deciding what is best for you. The opposite is maleficence, the act of committing harm, which every physician swears an oath not to do. If there was no beneficence in medicine, you could walk into your neighborhood pharmacy and get OxyContin, Adderall, Xanax, and a side of cocaine by request. I practice beneficence over autonomy regularly by telling patients that certain controlled substances are not in their best interest, or declining a patient’s request for an unnecessary CT scan because the risks of radiation outweigh potential benefits. It is also beneficence when I place a patient on a psychiatric hold because I feel that they are in imminent danger of harming themselves.
When discussing end of life care with patients, health-care professionals must balance these two ideas. Many providers are uncomfortable with these discussions, and often begin and end the discussion with, “Do you want everything done?”
Well, who doesn’t want everything done? The logical converse is putting someone in a corner to be ignored as they gasp for breath. In reality, there is plenty that can be done at the end of life. Medical school focuses on the diagnosis and treatment of disease, but often falls short in discussions of palliation of symptoms. I do not like the term “do not resuscitate (DNR)” as it implies that we are withholding care. In fact, what we are doing is changing to focus of care to allow natural death and palliation of pain and anxiety. We have many treatments available for symptoms at the end of life and I minimize the suffering of my dying patients.
What happens when the family and the provider are not on the same page? Just like most areas of human interaction, the key is communication. I was the chair of the bioethics committee at a community hospital for two years and the vast majority of ethics consultations were regarding end of life care. In almost all of these cases, the issue was resolved by compassionate, open communication. Physicians are often frustrated by patients and families who have unrealistic expectations. Unfortunately, we also put the burden on families in the name of autonomy. I have seen many families struggle with the decision of whether or not to attempt resuscitation for a loved one, and it is evident that they fear the guilt of making the wrong decision. I often then put that burden on myself and give them an opportunity to object by saying things such as, “resuscitation is unlikely to provide a meaningful recovery and likely to cause suffering so I recommend if she stops breathing or her heart stops that we allow a natural death.”
This often assuages the family’s guilt as I advise them what I think is best.
Since death is inevitable, the decision is really the balance between extending quality life and suffering. If I extend your life, but during that time you are unable to communicate and have to endure painful procedures, I have not really helped you. However, if those painful procedures will then return you to a life that you consider meaningful, I have done some good. Although I cannot see the future, I can predict the likelihood of a good outcome based on your prior health, function, and the nature of your current illness. All too often I see someone with severe dementia who is bed-bound with a feeding tube undergoing painful procedures that will inevitably only prolong suffering. Ethically, I think that is doing harm.
According to medical ethics, clinicians should not offer futile care. I see it happen in the name of autonomy or misguided fears of litigation. I do not offer feeding tubes to patients with dementia who stop eating because there is ample evidence that it does not prolong life and it does increase suffering. Those of us in healthcare need to remember that we are the experts and we should first do no harm. Those of you who are involved in these decisions need to ask your medical providers these difficult questions. Ask your physician, “If this were your mother, what would you do?”
Most of the deaths I see are predictable. As we age and deal with illness, we should not fear death, but plan for it. Death is a natural part of life, and will occur whether we are ready to accept it or not. Several studies have demonstrated that physicians are more likely to die at home and less likely to have aggressive surgical procedures at the end of life. Our patients should have the same consideration and be allowed a dignified death.
Speak with your family about your wishes and their wishes. If you have a family member with a serious chronic illness, don’t wait until you’re in the emergency department and frightened and someone is asking you if they should “do everything”.
We will all die some day and if we are prepared, we may be able to die well.
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