It’s Time to Talk About Death

The coronavirus pandemic highlights how much we need to have conversations about end-of-life care.

By Sunita Puri, M.D.

Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.

I cannot sit with Joseph’s wife and children to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue as they cry. Now, because of the coronavirus, most hospitals don’t allow families to visit.

Instead, I met Joseph’s wife and children on a Zoom conference call.

“I want to apologize to you for being a face on a screen,” I began. “I wish we could talk about this in person.”

They nodded together, their eyebrows furrowed.

“I wish that I had better news to share,” I said. “Unfortunately, despite our very best efforts to support Joseph’s heart, lungs and kidneys, his body is showing us that he is getting sicker.” I watched, disembodied from a distance, as they hugged each other and cried.

His wife told me that Joseph had never talked with her about what he would want in this sort of situation. “I don’t know what he would say,” she said. “We didn’t think this would ever happen.”

Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.

In Italy, doctors have had to make excruciating decisions about which patients receive ventilators, which are in short supply. In the United States, we are already facing shortages of life-sustaining therapies; doctors will need to make these same difficult decisions.

Our collective silence about death, suffering and mortality places a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes.

Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.

Here’s how I opened a conversation about death with my own parents earlier this month: “Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”

“If I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would help me stay independent,” my mother replied.

My father nodded in agreement. “My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me,” my father told me, stirring his tea.

Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a patient’s brother told her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial. In the fall, I walked the wife of a patient into her husband’s hospital room, where they renewed their wedding vows amid cake, balloons and glittery confetti.

“This was what she always wanted,” he told me when we discussed what was most important to him. “I put it off for so long, but I have to do it before I die.”

Working in the hospital with patients suffering from the coronavirus made me ask myself the questions I hope you will ask yourselves and the people you love:

  • What is most important to me in my life? (My family and pets, and the ability to write and doctor).
  • What makes my life meaningful? (My work; dancing; being outdoors; being with my loved ones).
  • What sort of quality of life would be unacceptable to me? (Being permanently bed-bound or neurologically devastated; indignity and suffering; depending on others for personal care).
  • Who is best positioned to speak on my behalf? (My brother).
  • Who would I not want involved in decision making? (Family living abroad).
  • Would I want to undergo C.P.R. should my heart stop? (Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I’d prefer to die peacefully rather than with C.P.R.).
  • What would bring me comfort if I were hospitalized? (Pictures of my family; music I love playing in my room; prayer).

This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations. The Serious Illness Conversation Guide gives health care providers a road map of when and how to start asking patients about dying. Both resources offer the compassionate, incisive — and often unfamiliar — language required for us to ask the right questions and empower our loved ones to share specific, honest answers.

Confronting our fears about death — having a conversation about it in frank terms — can be alternately terrifying and tender. Yet knowing how to honor our loved ones’ wishes when they can’t speak for themselves is one of the bravest and most loving things we can do.

Complete Article HERE!

Physician Aid in Dying Used Mostly by White Patients

By Roxanne Nelson, RN, BSN

In the United States, medical aid in dying (MAID) is used mostly by white patients, even after states with more racially and ethnically diverse populations legalized the practice.

Pondering why this is the case were speakers here at the National Clinicians Conference on Medical Aid in Dying (NCCMAID) 2020 during a session on ethnic and cultural considerations in aid in dying.

Factors such as culture and religious beliefs may play a role in preventing some individuals from considering this option, but a 2019 survey from the California Health Care Foundation found that there was support for MAID among African Americans.

“When asked if race and ethnicity prevented you from getting the services and healthcare you needed, 43% of black respondents said yes, that it has happened to them,” said Thalia DeWolf, RN, CHPN, clinical coordinator, Bay Area End of Life Options, Berkeley, California.

“But when asked if they would support the right to die when terminally ill, 70% of blacks and 82% of whites said yes,” said DeWolf.

“This is surprising, since it is almost at the level of the general population, and given the unequal access to medical care and unequal outcomes, they still believe that medical aid in dying should be legal,” she continued.

“We don’t bring this up to suggest complacency, but it brings up some interesting conversation to be had,” she added.

A recent study found that in Oregon and Washington, the two states where the practice has been legal for the longest period, most patients were non-Hispanic white individuals with some level of college education (JAMA Netw Open. 2019;2:e198648.)

In 2016, MAID became legal in California, a state with a much larger and far more diverse population compared to Oregon and Washington. Even so, about 88% of people who use California’s physician-assisted death law are white, according to 2018 data from the California Department of Public Health.

Speaking to Patients

There is an overall lack of participation by black patients in all programs related to end-of-life care, noted Tracey Bush, MSW, LCSW, regional practice leader, End of Life Option Act Program, Kaiser Permanente, Southern California.

“This includes aid in dying, and we consider this lack to be a healthcare disparity,” she said.

“We would be remiss to look at the disparities and participation in these programs without thinking about the disparities in the rest of our healthcare system,” she explained. “We need to think about where the line can be drawn between education, empowerment, and recruitment,” she explained.

From a programmatic perspective, she pointed out, information, pamphlets, and staffing are designed in a way that couches the MAID decision as individualistic, but not all patients have this point of view.

“My argument is that this population doesn’t really view medical decision making in that manner,” she said. “So are we designing our materials and having conversations in a way that really speaks to these patients?”

She also emphasized the need for a diverse care team across the board with regard to ideas, perspectives, cultural beliefs, gender, and ethnicity.

Complete Article HERE!

The State of the Medical Aid-in-Dying Debate

Diane Rehm updates us in her new book, ‘When My Time Comes’

Diane Rehm spoke during her book kickoff event Feb. 3, 2020, at the Sixth & I synagogue in Washington D.C.

By Richard Harris

Maybe, just maybe, America’s greatest taboo — talking openly about death — is itself dying a slow death. Too slow, if you ask Diane Rehm, author of the new nonfiction book, When My Time Comes.

“Until we overcome our fear about talking about death,” the longtime NPR host says, “few of us can have the end of life we envision. We’ve been so focused on living and accomplishing and moving forward that we don’t think about death as part of life.”

For 37 years, Rehm’s morning talk show — first on Washington, D.C.’s public radio station WAMU, then on NPR — allowed her to focus on living, accomplishing and moving forward. But that changed as she witnessed her husband of 54 years, John, decline to the point where he pleaded with his doctor to prescribe him a medication to end his life. And without a medical aid-in-dying law in Maryland, his doctor refused.

So, John Rehm, wracked by Parkinson’s disease, with a severely diminished quality of life, decided to starve himself to death. No water. No food. No medication. It would take him 10 days to die.

And that began Diane Rehm’s journey into advocacy. After signing off her talk show in 2016, she has immersed herself in the world of the terminally ill and studying the limited options available to those for whom palliative care (focused on relieving pain and symptoms) is not the solution to their end-of-life misery.

“We focus so much on happiness and joy surrounding birth, but we think about death as this place no one wants to go — but we’re all going there. Everybody is,” says Rehm in her office at WAMU, where she hosts the podcast “On My Mind.” A February 2019 episode discussed end-of-life issues and why so many people’s end-of-life wishes are not realized.

Discussing Aid in Dying

For several years, Rehm, 83, has crisscrossed the country, speaking to the terminally ill and their families, as well as advocates and opponents of medical aid in dying. She also talked to ethicists and physicians on both sides of the issue. It’s all part of an emerging national conversation about the right to die that Rehm has captured in her new book.

A companion public TV documentary of the same name as her book to be presented by WETA in Washington, D.C., is due out in the spring of 2021, and is being shown at festivals. See the trailer here.

During a speaking engagement in a church in Falmouth, Mass., Rehm asked audience members to raise their hands if, “you are one of those people who is not going to die.” Not a hand went up, of course, and it provoked a lot of nervous laughter.

Some of the crowd had gathered at that church for a “death café,” part of a movement that began in Europe in 2004 in which people of all ages talk candidly about dying, their fears and hopes for the end of life. It’s a sign that America’s reluctance to bring death out of the shadows may be fading.

The medical aid-in-dying movement for the terminally ill — some call it death with dignity —began in Oregon in 1994. It took another 14 years for Washington state to pass its law. “But since then, Montana (2009 State Supreme Court ruling), Vermont, California, Colorado, Washington, D.C., Hawaii, New Jersey and Maine have followed suit.

Each jurisdiction allows a patient who has no more than six months to live (certified by two physicians) to request a lethal dose of medication as long as that person has the capacity to decide and can self-administer.

Changing Minds on Medical Aid in Dying

More than a dozen other states are considering such a law, including Maryland, where Rehm testified last year in support of medical aid in dying. The bill lost by a single vote in the state Senate. But supporters, including the bill’s sponsor, the Maryland House of Delegates’ Shane Pendergrass, are optimistic that the End of Life Option Act will pass this year.

“Everyone is one bad death away from supporting the bill,” Pendergrass, a Democrat from Howard County, said during a news conference in January 2019.

Case in point: Maryland Del. Eric Luedtke, a Democrat from Maryland’s Montgomery County, who originally opposed the legislation. “The two biggest things that gave me pause were the concern about normalizing suicide (three of his family members had attempted suicide) and that some folks in the disabilities community believed aid in dying could be abused,” he told Rehm, who included his comments in her book.

Then, Luedtke’s mother, stricken with esophageal cancer, was in extreme pain — even with palliative care. A few days before she died, “she got the bottle of liquid morphine she had been prescribed, tried to drink it, tried to commit suicide,” he said.

A few months after his mother died, Luedtke signed on to the bill. “I began to question whether I had the right as an elected official, or even as her next of kin, to make that decision (of whether she could use a lethal prescription),” he said. “I think her death would have been less painful and there would have been more closure, had that option been available to her.”

Joe Fab, producer and director of Rehm’s documentary, became interested in end-of-life issues after his sister and both his parents died within four years. “We are just too frozen up in this country, talking about death,” he says.

The Core Conflict

Dr. Lonnie Shavelson, a former emergency room doctor who founded Bay Area End of Life Options in Calfornia, distilled the complex debate surrounding medical aid in dying, to a phrase, included in Rehm’s book: “You’ve got the ethic of autonomy against the ethic of maintaining life.”

The American Medical Association sides with maintaining life, opposing what it still calls “physician-assisted suicide” because the group says it’s “incompatible with the physician’s role as a healer.”

The question that remains unsettled in the context of the physician’s Hippocratic Oath is whether a doctor does more harm than good in writing a lethal prescription for a suffering, terminally ill patient.

The Catholic Church and other religious groups have not given their blessing to medical aid in dying. Diane Rehm is quick to say she respects all opposing views, but remains steadfast in her support for the terminally ill individual choosing when his or her life should end.

The public likely associates two people — Jack Kevorkian and Brittany Maynard — with medical aid in dying more than anyone else. Kevorkian, the controversial pathologist who assisted in the deaths of 130 terminally ill patients in the 1990s and was sent to prison, kicked off the national debate over the right to die.

But it was Maynard who put a new, young face on the right-to-die movement and perhaps did more than anyone in accelerating the growth of laws. Given six months to live with a brain tumor, Maynard moved to Oregon to take advantage of that state’s death-with-dignity law. Before she died on Nov. 1, 2014 at 29, her videos promoting medical aid in dying went viral.

Rehm’s Take on the Subject

At the conclusion of Rehm’s book and documentary, she asks her grandson, Benjamin Zide, a Dartmouth sophomore studying medical ethics, to pick up his phone and take a video of her as she described what would be for her a “good death.” Here’s what she says:

“I came across a perfect paragraph that Anne Morrow Lindbergh left behind. She wrote, ‘To my family, my physician and my hospital: If there is no reasonable expectation of my recovery from mental or physical disability, I request I be allowed to die and not be kept alive by artificial means and heroic measures. I ask that medication be mercifully administered to me for terminal suffering, even if it hastens the moment of my death. I hope that you who care for me will feel morally bound to act in accordance with this urgent request.’”

Last night, as Rehm kicked off her book tour at Washington, D.C.’s Sixth & I synagogue, she recounted her mother’s suffering before dying at age 49 and how John Rehm’s father and mother committed suicide. So, the subject of death was part of the conversation at their dinner table, even before John was diagnosed with Parkinson’s.

Diane Rehm says she told her husband, “When my time comes, I need some help from you. I don’t want to live to the point where I’m sick and infirm and cannot take care of myself.” And, she says, “John looked at me and said, ‘I feel the same way.’”

Complete Article HERE!

I had to slow down or die

By Al Kags

Last September, I came this close to dying. I had been travelling on some family business when I found that I was getting weaker by the day. My mouth was getting extra dry despite drinking copious amounts of water and I had significantly lost weight.

Losing weight in itself had been a mission of mine (at the beginning of last year I weighed a whopping 116 kg!) and I had been steadily coming down the scale but in September, I suddenly lost 10kg – just like that!

I came back to Kenya and I was scheduled to leave for the UN General Assembly in New York two days later. The plan was that I would get home early in the morning and hang out with my wife Liz and children that day. The next day I would go to the office, where my team would prepare me for the meetings I would attend in the big apple.

Things went according to plan – sort of. I spent the day with the kids but by then I was so weak that I was not quite conscious. I was moving and talking, but it was like I was in a dream state. I went to the office on the next day and my colleagues were shocked to see how gaunt I had become – my skin was grey, I was thinner than they thought. Still, I had work to do and a trip the next day so I toughened up and focused on the day.

By noon, I couldn’t take it anymore. I went home and two hours or so later, my friends came by and drove me to the hospital. I just needed our friend, a doctor, to review me and give me “something” to tide me over through the New York trip. My friend runs a specialist clinic at Mater Hospital and so we went there.

I signed myself in, went through triage and there, I started to appreciate just how bad things were. My blood pressure was 150/120. Normal blood pressure is 120/80. At that level, it was deemed an emergency and I was fast-tracked to see a casualty doctor. This doctor was visibly disturbed as he asked me questions. Normally, what doctors in casualty would do is to send one over to the lab for tests and then he would review them when they were out. Not on this day. He dropped everything on his plate and focused on me.

Nothing looked good. My blood pressure was very high. When they checked my blood sugar, it was too high to give a figure – it simply said “HHH” – High, High, High, which meant that it was higher than a reading of 33. Normal blood sugar should read between 4 and 7.2. They checked on the levels of various minerals that you need in the body – Potassium (which helps your muscles move), sodium, etc. I was in the negative on all of them.

It’s an emergency

In short, I was severely malnourished and dehydrated (had lost more than 10 per cent of my body water), my blood pressure was high and I had sustained ridiculously high blood sugar levels for several days or weeks and therefore I had become diabetic. They checked my hormonal levels and cortisol (what I call the tired hormone) and adrenaline (the fight or flight one) were too high.

I was diagnosed with Diabetic Ketoacidosis, a major emergency. I was also told that my body organs had gone into shock. It was a wonder, the doctors told me, that I was even conscious. “Even if you could not afford this hospital, I am required to detain you and stabilise you whether you like it or not,” the doctor told me as I protested being admitted – to the High Dependency unit no less!

“Besides,” said the doctor, “You are also exhausted and you need to rest.”

I was under intensive care for about 7 days and then I was allowed to the ward to regain my strength before going home. In that time, I was simply in shock and devastated that I had irrevocably “broken” my body. As the days went by, I learnt that I had had no organ damage and that although I was diabetic and hypertensive, I have a chance to live again.

Too much advice, too little sense

In the first few days of my recovery, I received a lot of advice – most of it confusing and some of it contradictory. I was told to prepare to inject myself with insulin for the rest of my life, that I could no longer eat and be full. I needed to be very careful about what I ate. I was told many stories of people who had lived long lives like that. My life was about to completely change.

I later went to see my family doctor, Dr Dennis Nturibi, who runs a lifestyle modification programme for many urbanites – especially executives and for the first time. I started to understand what was happening to me.

Let me break it down for you in the way you can explain it to a five-year-old. Normally, your body functions automatically. Imagine all your organs as departments in which little people work and operate the machinery that is your organs. When you eat the food goes to the stomach, where the little people in there pour in chemicals and enzymes that extract sugar from the food. They pour that sugar into the bloodstream.

When there is a lot of sugar in the bloodstream, a message is sent to your pancreas. The little people in the pancreas are called Insulin and their job is to swoop into the bloodstream, arrest the sugar and throw it in the cells. In each of the billions of cells in your body, a little person burns the sugar and therefore generates energy which your body needs.

In my body, the system crashed. After many years of flooding my bloodstream with sugar, the insulin tribe had become overworked – they were working overtime to arrest sugar from the bloodstream and put it in the cells only to find that there was too much to deal with. So they went back into the Pancreas and shut the machines down. They were on strike.

Now that there was no sugar being delivered into the cells, even though it was flooding the bloodstream, the cells sent alarms to the brain, which told the people in the mouth to take in more sugar. Eventually, there was too much sugar in the bloodstream – and the blood became like syrup. That is why blood pressure went up. The system eventually crashed altogether and I was in intensive care.

The wonder diet

Dr Nturibi told me that I was not going to die and that there are ways to reverse the condition. If I was consistent and I worked towards it, I would stop all medication and insulin in time. The secret was food.

He introduced me to a diet that has had a tremendous impact in my life. I was off insulin in three weeks and off all medication within five weeks.

My diet is simple. I eat a green salad three times a day, before every meal. For breakfast after salad, I have black tea and arrowroots or sweet potatoes or oats. My favourite meal for breakfast is last night’s food. For lunch and dinner, I have a lot of vegetables, a lot of plant protein and some whole carbohydrates – brown rice, githeri, potatoes, brown ugali. I do not eat processed foods – not even juice (juicing is processing fruit), I avoid animal protein (milk, meat or cheese) and I quit sugar and alcohol altogether.

“So long as you are eating the right things, eat as much as you want,”

Dr. Dennis Nturibi, Ask-a-Doc
With these measures, I have continued to lose weight steadily, my blood sugar is normal and the little people in my pancreas are back to work. Of course, none of it would be possible if it wasn’t for Liz, my wife who has been both a caregiver and “policewoman”, making sure that I stuck to my diet – even when all I wanted was a burger, fries and an extra thick chocolate milkshake.

“Here’s some fruit,” she’d say.

I have learnt to plan ahead of every day and to pack my salad, food and fruit for the next day. That way I am never hungry because hunger is what makes us eat unhealthy things. So long as I have the right things to eat near me all the time, I am using food as the best medicine of all.

What is diabetic ketoacidosis

Diabetic ketoacidosis is a serious, sometimes life-threatening complication that affects people with diabetes. It is brought about when the blood becomes too acidic from a high amount of ketones present. Ketones are produced when one doesn’t have enough insulin to turn sugars into energy and thus the body turns to the fat. The liver then turns the fat into ketones and sends it into the bloodstream.

Ketone production can be brought about by:

· Untreated Type 1 diabetes

· Long periods of low food intake

· Restricted diets

· Prolonged intense exercise

· Alcoholism

Complete Article HERE!

Protecting Trans Bodies in Death

Your life. Your death. Your rights.

***SELECTED SOURCES/ADDITIONAL READING***

“DYING TRANS: PRESERVING IDENTITY IN DEATH” http://www.orderofthegooddeath.com/dy…

“The Supreme Court is finally taking on trans rights. Here’s the woman who started it all.” https://www.vox.com/latest-news/2019/…

“R.G. & G.R. HARRIS FUNERAL HOMES V EEOC & AIMEE STEPHENS” https://www.aclu.org/cases/rg-gr-harr…

“A transgender woman wrote a letter to her boss. It led to her firing — and a trip to the Supreme Court.” https://www.washingtonpost.com/nation…

“Transgender woman dies suddenly, presented at funeral in open casket as a man” https://www.miamiherald.com/news/loca…

“Transgender People Are Misgendered, Even in Death” https://www.vice.com/en_us/article/ex…

Getting Familiar with Life’s Certainty: The D-Word

“I’m gonna die, you’re gonna die. So is everyone we’ve ever loved and hated. And that’s OK.”

By Molly Marco

When I thought about what to write for my End Well blog post, I struggled to think of something different than what I submitted last year. The story I share in last year’s piece is one I’ve now told a million times. I know it well — where to put the emphasis (“Ever onward!”) and what will get the audience’s applause. Conversely, I know what parts of my story people may want to deny or avoid: Death. Dying. Fears and deficits that come with a brain cancer diagnosis.

In July 2016, my brain tumor was discovered after I fainted off a bar stool at a downtown Detroit coffee shop. Turns out, it wasn’t just a simple faint: I had a grade 3 anaplastic astrocytoma. A grade 3 astrocytoma is a junior glioblastoma (or, more accurately, a glioblastoma is a grade 4 astrocytoma). It is incurable and considered a terminal diagnosis, though many patients prefer to call it a chronic illness. That doesn’t mean I’m dying tomorrow — unless, as my neuro-oncologist once told me, I get hit by a car or something like that — it just means we don’t have a fix.

We expect my tumor to, maybe, charge up and for those rogue astrocytes to return — either as anaplastic astrocytoma again, or GBM. One or the other, no lesser. I won’t get better, we just hope that we can hold it off as long as possible before its encore performance. Worse than reoccurrence or GBM? There’s not really anything worse. It’s a turd sandwich.

Though come to think of it, there is worse. Worse is denying that reoccurrence is possible. Worse is convincing myself that I am cured and “cancer-free” (no brain cancer patient should ever be told that falsity) only to crumble and fall to pieces when new growth appears on a future MRI.

After Molly finished her chemotherapy, she got this tattoo. | Memento Mori: Remember you must die. Amor Fati: Love your fate

Worse is not mentally planning for future treatment, including palliative and end-of-life care. When to demand my off-switch to be clicked, so my family isn’t left making the difficult choice for me.

There may come a time when I can’t write and I can’t speak, so I plan to make these decisions while I’m still in control of my think-box.

Losing my mom last year and my aunt recently brings certain things to the forefront of my now with urgency: Death is guaranteed. Death will happen. I want to be ready. Not because I’m morbid or depressed, but the opposite of that. The thought of leaving this world — everyone and everything I love — scares me. The thought of the act of dying scares me more than death itself, to be honest. I need to be on better terms with death and dying.

If death is anything like falling off a barstool and passing out, I can handle that. The thought of an eternal afterlife I can’t even comprehend, but that sounds cool, too. But dying in pain and afraid? That is what I fear. I don’t want that. However, I choose to talk about it so I am as familiar with death and dying as I am with my own name. It’s not because I crave death, it’s because I love being alive with every fiber of my being. I love life so much.

And if we’re honest with ourselves, we can admit that in loving life — truly loving life — we can accept death as a thing we all do. There should be no stigma attached to something absolutely guaranteed from the moment we come into existence: I’m gonna die, you’re gonna die. So is everyone we’ve ever loved and hated. WE ARE ALL GOING TO DIE. That’s that. And that’s OK.

Last year, I suggested we live our best lives and live them right now. This year? Live our best lives, live them right now, because one day — you are going to die. Learn to let it be OK. And be ready.

Complete Article HERE!

With Dementia, More is Needed than a Boilerplate Advance Directive

By Katy Butler

My parents lived good lives and thought they’d prepared for good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance directives they’d signed at the urging of their elder lawyer. But after my father had a devastating stroke and descended into dementia, the documents offered my mother (his medical decision-maker) little guidance. Even though dementia is the nation’s most feared disease after cancer, the directive didn’t mention it. And even though millions of Americans have tiny internal life-sustaining devices like pacemakers, my mother was at sea when doctors asked her to authorize one for my father.

Our family had seen advance directives in black and white terms, as a means of avoiding a single bad decision that could lead to death in intensive care, “plugged into machines.” But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail.

In our family, one of those micro-decisions was allowing the insertion of the pacemaker, which I believe unnecessarily extended the most tragic period of my father’s life, as he descended into dementia, near-blindness, and misery. In the process of researching my new book, The Art of Dying Well, I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia.

If there was one silver lining in my father’s difficult, medically-prolonged decline, it is this: It showed me the havoc dementia can wreak not only on the life of the afflicted person, but on family caregivers. And it encouraged me to think more explicitly about my values and the peculiar moral and medical challenges posed by dementia. At the moment, I’m a fully functioning moral human being, capable of empathy, eager to protect those I love from unnecessary burdens and misery. If I develop dementia —which is, after all, a terminal illness —I may lose that awareness and care only about myself.

With that in mind, I believe that “comfort care” is what I want if I develop dementia. I have written the following letter —couched in plain, common-sense language, rather than medicalese or legalese — as an amendment to my advance directive. I’ve sent it to everyone who may act as my guardian, caregiver or medical advocate when I can no longer make my own decisions. I want to free them from the burden of future guilt, and that is more important to me than whether or not my letter is legally binding on health care professionals. I looked at writing it as a sacred and moral act, not as a piece of medical or legal self-defense. I’ve included it in my new book, The Art of Dying Well: A Practical Guide to a Good End of Life. I invite you to adapt it to your wishes and hope it brings you the inspiration and peace it has brought to me.

Dear Medical Advocate;

If you’re reading this because I can’t make my own medical decisions due to dementia, please understand I don’t wish to prolong my living or dying, even if I seem relatively happy and content. As a human being who currently has the moral, legal, and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial, and practical burdens that dementia and similar illnesses place on those who love me. Once I am demented, I may become oblivious to such concerns. So please let my wishes as stated below guide you. They are designed to give me “comfort care,” let nature take its course, and allow me a natural death.

  • I wish to remove all barriers to a peaceful and timely death.
  • Please ask my medical team to provide Comfort Care Only.
  • Try to qualify me for hospice.
  • I do not wish any attempt at resuscitation. Ask my doctor to sign a Do Not Resuscitate Order and order me a Do Not Resuscitate bracelet from Medic Alert Foundation.
  • Ask my medical team to allow natural death. Do not authorize any medical procedure that might prolong or delay my death.
  • Do not transport me to a hospital. I prefer to die in the place that has become my home.
  • Do not intubate me or give me intravenous fluids. I do not want treatments that may prolong or increase my suffering.
  • Do not treat my infections with antibiotics—give me painkillers instead.
  • Ask my doctor to deactivate all medical devices, such as defibrillators, that may delay death and cause pain.
  • Ask my doctor to deactivate any medical device that might delay death, even those, such as pacemakers, that may improve my comfort.
  • If I’m eating, let me eat what I want, and don’t put me on “thickened liquids,” even if this increases my risk of pneumonia.
  • Do not force or coax me to eat.
  • Do not authorize a feeding tube for me, even on a trial basis. If one is inserted, please ask for its immediate removal. 
  • Ask to stop, and do not give permission to start, dialysis. 
  • Do not agree to any tests whose results would be meaningless, given my desire to avoid treatments that might be burdensome, agitating, painful, or prolonging of my life or death.
  • Do not give me a flu or other vaccine that might delay my death, unless required to protect others.
  • Do keep me out of physical pain, with opioids if necessary.
  • Ask my doctor to fill out the medical orders known as POLST (Physician Orders for Life Sustaining Treatment) or MOLST (Medical Orders for Life Sustaining Treatment) to confirm the wishes I’ve expressed here.
  • If I must be institutionalized, please do your best to find a place with an art workshop and access to nature, if I can still enjoy them.

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