Celebrating a life well-lived — one year later

“The goal is not a good death. The goal is a good life — all the way to the very end.”

— Atul Gawande, M.D., surgeon, writer and public health leader

By rclark

One year ago on this date, July 11, 2019, my wife, Norma, was freed from the prison of Alzheimer’s disease. So exactly one year later it is appropriate to celebrate Norma Houghton’s life and share with my readers personal reflections on my recovery.

You who have been with me all the way from diagnosis in 2010 to last summers’ final breath know the documented story of a lady who gave an extraordinary gift to sacrifice her privacy to help others. The sadness in over 10 years of seeing her drift away was softened by the concern of many readers, as well as numerous caregivers.

My restoration and renewal following our 57 years of marriage has been facilitated in part by periodic messages this past year from her hospice caregivers from Compassus. A healing journey of recurring memories was predicted by their periodic communication.

Norma’s good works have been recognized with the Norma A. Houghton Staff Award in the Birthing Center of Monadnock Community Hospital and an annual scholarship for a graduating student from one of our three local high schools choosing higher education in nursing.

As past co-chair of the Western New Hampshire Walk to End Alzheimer’s, I have been given the satisfying task of using my wife’s story as a monthly “mission moment” to cheer on the current walk committee through the challenges of planning a major event during the pandemic.

So her legacy lives on and, though grief has come to my life, spiritual growth and a new life have also emerged as predicted and aided by Compassus. I can now see that hospice is not about dying but helping caregivers and patients live life to the fullest.

When our time on Earth comes near a close, the choice of hospice provides a better quality of life than if aggressive end-of-life medical care were applied. Dr. Gawande’s classic treatise, “Being Mortal,” about “medicine and what matters in the end,” is on point.

You may remember an early column about full body donation for medical education. I expect next week to travel to Boston University Medical School to bring Norma’s ashes back to Jaffrey. Plans are being laid at the United Church to develop a memorial garden as a final resting place for beloved members of the church.

If you want to find out more about hospice services, visit the hospice and palliative care organization (www.nhpco.org). It is not true that hospice is only for the final days or hours of life. Hospice is about helping patients and their families have the best possible quality of life as they can when life expectancy is limited.

Usually a patient’s doctor and the hospice medical director work together to offer experience with hospice criteria, guidelines and clinical judgements. Hospice Medicare coverage includes nurses, other caregivers, medicines, supplies and equipment, with little or no cost to patients, families or caregivers.

Clearly for me hospice care provided even more than medical, emotional, social and spiritual support. I find myself surrounded with family and friends who share my loving memories of Norma and continue to offer peace and support as I come to this special date.

Compassus gave me positive relief and strength during a time of extended grief, allowing me to create appropriate remembrances and lasting reminders of a life well lived. Since they suggested a celebration on the anniversary of my loved one’s death, isn’t it a joy that my July column is published as a tribute on this very date!

“Enjoy life. Have fun. Be kind. Have worth. Have friends. Be honest.

“Laugh. Die with dignity. Make the most of it. It’s all we’ve got!”

— Ricky Gervais

Complete Article HERE!

BIPOC in Death Care

The voices of Black, Indigenous, and People of Color (BIPOC) need to be amplified so we are going to use our newsletter and social media platforms to aid in their sharing. Here are a few resources for us to explore racism, privilege, and bias in death care:

Sayin It Louder: A Conversation About “A Good Death” in a Racist Society.

A conversation among death care professionals Alua Arthur of Going with Grace, Lashanna Williams of A Sacred Passing, Joél Simone Anthony of The Grave Woman, Alicia Forneret, Oceana Sawyer, and Naomi Edmondson.

 

Watch the recording of their discussion by clicking here.

When ‘content’ means choosing the day you die

Lynn Kennedy Ottawa in apartment on Wednesday Feb 5, 2020.

By Kelly Egan

One day last week, Lynn Kennedy finally got the medical news that would end her chronic pain and stop the many-sided suffering she has endured for nearly 10 years.

Doctors agreed to help her die.

Kennedy, 58, had been trying for months to have a medically assisted death and went public with her wishes in February to draw attention to a major barrier in Canada’s regulations.

Applicants could only be approved if their death was “reasonably foreseeable” and, at the time, hers was not, leaving her to cope with years, possibly decades, of declining physical and mental health.

“I’m not me anymore,” was the devastating way she expressed her station in life.

Kennedy, a former administrator with the Ottawa Police Services Board, had been battling a condition called transverse myelitis, a disorder caused by inflammation of the spinal cord and one that can mimic the symptoms of multiple sclerosis.Over a decade, her mobility was gradually reduced to the point that she went from using a cane to an electric wheelchair. She was unable to get out of bed or get to the washroom and, in 2019, moved to a retirement home where she needed support for daily living.

A severe gastro-intestinal blockage landed her in hospital in May. An attempt to give her liquid medicine via a “nasty and uncomfortable” feeding tube earlier this month did not go well, as she has a strong gag reflex.

“That lasted about a day,” she said in an interview from her fifth-floor bed at The Ottawa Hospital’s Civic campus. “I just started screaming, ‘I’m done, I’m done, get it out, I’m done.’”

Because the consensus from two doctors was that the upper-tract blockage — left untreated — would bring about her death in fairly short order, her MAiD, or medically assisted death application, was approved.

Kennedy died in hospital Tuesday, but not before reinforcing her message about the program’s shortcomings.

“I shouldn’t have to wait for someone that I don’t know, didn’t know, and never met, to decide my fate,” she said in a final interview.

“Let it be the patient’s choice. Don’t let a stranger decide.”

Though she worries for her daughter Courtney, 37, and two grandchildren, Kennedy said her strongest reaction to being approved was relief.

“When I heard I was accepted, it was a big sigh and I thanked (the doctor).”

*

Two hours after, Courtney called with the news, pulled over by the side of the road. Her mother went peacefully, in a matter of minutes, before the clock struck noon.

“I’m relieved for her. We had a great last couple of days together and even better final moments.” Lynn’s older sister Gail was also present. That morning, medical staff came by, saying they had learned a good deal about her rare condition, MAiD and the force of one patient’s courage.

The night before, Kennedy received some welcome news. A genetic researcher in the United States said he would be anxious to have spinal cord samples from her, to better study transverse myelitis and help develop treatment options.

It was the first time, Courtney was told, that such a sample would be received by Harvard University’s medical school.“It was a really, really great thing for mom to hear. She always wanted to help somebody or help with something when she went.”Her eyes were also donated. Her mother’s determination to control her own outcome never wavered, Courtney added.

“She absolutely, 100 per cent had no regrets,” she said. “We both said the most perfect things to each other right at the end.”

Among the last things her mother said was “thank you.”

*

Kennedy spoke of the long stretches she has spent in hospital during the last several years, each stay leaving her a little more diminished, the 30 pills she took daily, the loss of independence, the reliance on a call button for basic needs.

“Every time I go in the hospital, I lose something. Every time, and that goes back four years,” she said.After first applying in December, she met all of the MAiD requirements except for the “foreseeable” clause and initially even had a date picked out — Feb. 8 — when her request was denied.

Lynn Kennedy in her apartment in Ottawa Wednesday Feb 5, 2020.

Kennedy went public with her concerns in a story by this newspaper at a time when the federal government was — and still is — proposing changes to the Criminal Code provisions that permit medically assisted death in this country.The revisions were needed after a Quebec Superior Court ruled the “reasonably foreseeable” requirement was a violation of a person’s constitutional rights. The court ordered Parliament to amend the law by July 11.

A spokesman for the Justice department said the COVID-19 pandemic has made it impossible for legislators to meet the deadline and an extension to Dec. 18 has been sought in a court motion. More than 6,700 Canadians have had a medically assisted death since the law came into effect in 2016.Among many changes, the “reasonably foreseeable” section of the law is being rewritten to give patients more control of the timing. The issue of “advanced consent” is also being addressed, in cases where individuals lose mental capacity in the course of their illness.Kennedy, a single mother who admitted to feelings of “cold heartedness” in this seven-month process, said she was not afraid of dying.

“No. Nobody knows where we’re going.”She spent her final days in the company of her daughter and sister and, even in her final hours, never lost her sense of humour. (The food at the General campus, she said, was “gross,” and of her iron-resolve to have an assisted death, she said: “I made two doctors cry today.” No mention, meanwhile, of the grizzled scribbler, wiping something from his eye.)“I’ve been isolating myself for the last year and a half,” she said of tidying up loose ends. “I’m quite content.”We do not doubt her on that point. She had, after all, the final say.

Complete Article HERE!

How I Spent My Summer Vacation 2020

Only the most avid readers of this blog may recall a similarly titled posting, How I Spent My Summer Vacation, from August 1, 2016.

St. Joseph Hospital Main Campus

Well, here it is nearly five years later and I have another harrowing experience to tell you about.

Three months ago, I started having some pain in my left shoulder while walking. (Actually, the shoulder pain started three years ago. But after a stress test scheduled by my GP a year ago, to confirm if this was discomfort was heart related, and the test coming back negative, I decided that the pain was structural. I just figured that I had bursitis.) In fact, all symptoms disappeared after the stress test. Go figure!

Anyhow, the shoulder pain reappeared in March. This time around, it began to radiate down my arm. Soon I couldn’t do any kind of walking, let alone hiking, without discomfort. This was a bit of a problem because I’m an avid walker. Two months ago, the shoulder pain began to radiate not only down my arm but into my arm pit and then into my chest and back.

By this time even I knew that this wasn’t no stinkin’ bursitis.

At the behest of my GP, I reached out to my cardiologist again. I had just had a major pain episode that nearly brought me to my knees, and I wanted his input. At the appointment the cardiologist showed only minor concern. He said he wanted me to do another stress test in 30 days and then see him again in six weeks, the end of July. I couldn’t believe it. I was exhibiting all the classic symptoms of angina and I thought I needed more than a promise of a stress test and a follow visit.

At the end of the appointment, as the doctor was leaving the exam room, I said; “What am I supposed to do about all this crippling pain?” “Oh,” he replied, “I’ll write you a prescription for nitro glycerin. When you begin to experience pain, pop a tab under your tongue. This will give you relief.” And so, it did. It was kinda miraculous actually.

Problem was, I needed to pop a tab at least once a day, often twice a day.

When my GP discovered that I was doing so much nitro, he became very proactive. He ordered a chest x-ray, a CT scan, and some blood work. He wanted to rule out lung problems among other things.

When my first nitro glycerin script was nearly exhausted, I call the cardiologist for a refill. His nurse freaked out at the amount of nitro I was taking and said; “Nitro glycerin is supposed to be used sparingly, for emergencies.” I replied; “Well, then I’m having emergencies each and every day, and often twice a day.”

Apparently, this nurse’s concern lit a fire under my cardiologist. She told me that the doctor now wanted me to skip the stress test, still weeks in the future, and come in for an angiogram. He had an opening on July 2nd. Could I last two more weeks? I didn’t think so.

Meanwhile, my GP wanted me to consult with another cariology practice in Bellingham, 45 miles from where I live. Since I had lost all confidence in the local cardiologist, I agreed. In a matter of hours, I was set up with the PeaceHealth cardiology practice. I was to call the next day and set up an appointment with the next available cardiologist. Things were that critical. Last Friday morning I called and set up an appointment for the following Tuesday.

PeaceHealth Logo

My GP also insisted that I call 911 if my pain increased.

That night, Friday night, it did. Despite popping two nitro glycerin tabs in three hours I was still in acute pain and short of breath.

At about 10:30pm I woke up Steve and asked him to drive me to Emergency Receiving at Island Hospital.

Once in the ER, I was immediately strapped to a heart monitor, blood was drawn, and arrangements were made to medivac me to St Joseph Hospital in Bellingham. The first blood test revealed normal levels of the cardiac enzyme which measures the levels of enzymes and proteins that are linked with injury of the heart muscle. I thought that was good news. Four hours later, still in the Island Hospital ER, there was another blood draw. This time the cardiac enzyme reading had spiked. The doctor told me I must have had a heart attack in the interim.

I languished for ten hours in the Island Hospital ER. They were having a problem finding transportation to Bellingham.

At 9:30am Saturday morning I was finally on my way to St. Joe’s.

Once there, I was placed in the Cardiac ICU where I was poked and prodded to within an inch of my life. I also got an echocardiogram. I had had no food or water since the previous evening. I was exhausted and, I’ll admit, frightened.

Being the good little end of life educator that I am, I had the foresight to bring along a copy of my POLST (Physician Orders for Life-Sustaining Treatment) form. The ICU nurses were so surprised that I had this important document with me. They said they never see patients being this proactive.

At the top of the POLST form, the very first question asked is about Cardiopulmonary Resuscitation Orders. One can either choose: YES CPR: Attempt Resuscitation, including mechanical ventilation, defibrillation and cardioversion (or) NO CPR: Do Not Attempt Resuscitation. I had chosen the second, NO CPR. I hadn’t come to this decision lightly, but it did reflect my deepest held feelings about end of life care for myself.

Later that afternoon I had my first encounter with the cardiac surgeon. He sauntered into my room as brusque as you please and announced that he wouldn’t even consider the life-saving treatment I needed, an angioplasty, if I didn’t change my POLST form to allow a full code should complications arise during the procedure. I was absolutely stunned! I was being held hostage at this most vulnerable point of my life. And for what?

Cardiac surgeons are at the pinnacle of the medical pantheon and most have egos that surpass their bountiful skills. They almost never encounter resistance from anyone, least of all from a lowly patient. But I stood my ground.

“Are you telling me that you won’t save my life if I don’t grant you a full code?”

He responded; “Yes, my hands are tied.”

I couldn’t believe my ears. I tried to explain why I had chosen the DNR (Do Not Resuscitate). He just blew me off. He was so condescending and patronizing. My efforts to defend my choices fell on deaf ears. I could just imagine him thinking; how adorable is this? A layman trying to play doctor with the big boys? The standoff continued.

“Why do we even have POLST forms?” I asked.

“They are for emergencies.” He responded.

“So, and EMT (Emergency Medical Technician) or an ER doc would be constrained by my POLST, but not you, a cardiologist? I see! Actually, I don’t see. This is ridiculous.”

He just stared at me.

You know how this is gonna end, huh?

In the end I sheepshly relented. What could I do? I was so bummed.

The cardiologist walked out of the room without another word and I had no idea where I stood.

Hours later, I asked one of the nurses; “Will I be getting the angiogram, or not?” He didn’t have an answer. Nothing like adding anxiety to an already overburdened heart.

Around 6:00pm two burly nurses stopped outside my room with a gurney. “Let’s get you up here.” One said pointing to the gurney. “What’s going on?” I asked. “Time for your angioplasty.” And just like that I was wheeled off.

I guess it was determined that my case was critical, and no time could be wasted in attending to me, POLST form be damned. My echocardiogram showed a major blockage in my already weakened heart. An hour and a half later I was the recipient of two brand-spankin’ new heart stints, don’t cha know.

Heart Stent

I’ll spare you the gory details of my recovery. I’ve gone on too long already. Suffice to say that with the assistance of a cohort of amazing nurses and other support staff, I am here to relate this story to you. God bless ‘em all!

There are a lot of lessons to be learned here, not least of all is our right to choose the end of life path we desire despite the pressures of conflicting interests. And how we ought to stick to our guns because our wishes are sacred all bullying aside. But the biggest lesson and…

The Moral Of This Story Is
My friends, life is short! Live every day like it’s your last. Be kind to yourself and those around you. Because, in a twinkling of an eye, it can and WILL be over.

The End

End-Of-Life Planning Is A ‘Lifetime Gift’ To Your Loved Ones

By Kavitha Cardoza

Talking about death makes most of us uncomfortable, so we don’t plan for it.

That’s a big mistake, because if you don’t have an end-of-life plan, your state’s laws decide who gets everything you own. A doctor you’ve never met could decide how you spend your last moments, and your loved ones could be saddled with untangling an expensive legal mess after you die.

Betsy Simmons Hannibal, a senior legal editor at legal website Nolo, puts it this way: Planning for the end of life isn’t about you. “You’re never going to really get the benefit of it. So you might as well think about how it’s going to be a lifetime gift that you’re giving now to your parents or your partner or your children. It really is for the people you love.”

Here are some simple, practical steps to planning for the end of life. These tips aren’t meant to be legal or medical advice, but rather a guide to ease you into getting started.

1. Name an executor.

If you’re an adult, you should have a will, says Hannibal. Estate planning is not just for the rich. “It’s not just about the value of what you own. It’s also the feelings that you and your loved ones have about what you own.”

If you own lots of valuable stuff — real estate, trust funds, yachts — you probably need a lawyer. But for most of us, a simple document could do. Your state or county bar associations usually keep a list of lawyers who do this pro bono. Or you could download an online form like Quicken WillMaker & Trust for less than $100. (Full disclosure: Hannibal works for Nolo, which owns Quicken WillMaker & Trust.)

She says the first thing you do is name (in writing) a person whom you trust to take care of everything when you die. In most states that person is called an executor; in some they’re called a personal representative.

Hannibal says it’s a good idea to choose someone from your family. “The most important thing is that you have a good relationship with them — and also that they have a good attention to detail, because it’s a lot of work to be someone’s executor.”

An executor would have to, for example, find all your financial assets and communicate with everyone you’ve named in your will. It’s a big ask, so Hannibal says just be upfront. She suggests asking the person directly, “Would you be comfortable wrapping up my estate when I die?”

2. Take an inventory.

List everything you own, not just things that are financially valuable — such as your bank accounts, retirement savings or car — but also those things that have sentimental value: a music or book collection, jewelry, furniture. Then list whom you want to leave what to.

If you have young children, name a guardian for them. Choose carefully, because that person will be responsible for your child’s schooling, health care decisions and value system.

Hannibal says pets are considered property under the law, so she suggests naming a new owner so that the state doesn’t do it for you.

Digital accounts are also part of your property. This includes social media accounts, online photos, everything in, say, your Google Drive or iCloud, online subscriptions, dating site profiles, credit card rewards, a business on Etsy or Amazon. Hannibal suggests keeping a secure list of all those accounts and the login and password details. Let your executor know where the list is.

Just as you write out specific instructions about your physical belongings, be clear about what you’d like to happen with your online information.

She says it’s better not to have a handwritten will, because proving you wrote it will require a handwriting expert. So keep it simple. Just type out your wishes and have two witnesses watch you sign and date it. Then have them do the same. Hannibal says by signing it, “they believe that the person who made the will is of sound mind, and that’s a pretty low bar.”

You don’t need to file your will anywhere; neither do you need to get it notarized for it to be legally binding. And don’t hide it. Hannibal says just tell your executor where you’ve kept a copy.

Remember that your decisions will change over time. So if you have a child, buy a house or fall out with a family member, update your will.

3. Think about health care decisions.

Your will takes care of what happens after you die. An advance directive is a legal document that covers health care and protects your wishes at the end of your life.

There are two parts to an advance directive. The first is giving someone your medical power of attorney so the person can make decisions for you if you can’t. The other part is called a living will. That’s a document where you can put in writing how you should be cared for by health professionals.

Jessica Zitter is an ICU and palliative care physician in Oakland, California. She says that we’ve become experts at keeping people alive but that quality of life can be forgotten.

She has seen thousands of situations of loved ones making difficult and emotional decisions around a hospital bed. It’s worse when family members disagree about a course of action.

You know the saying “The best time to plant a tree was 20 years ago. The second best time is now”? Zitter says with the coronavirus in the news every day, more people are realizing that these end-of-life conversations are important. “That tree was always important to plant. But now we really have a reason to really, really plant it. … That time is now.”

You may have heard of Five Wishes, which costs $5 and will walk you through choices, or Our Care Wishes, which is free.

4. Name a medical proxy.

Pallavi Kumar is a medical oncologist and palliative care physician at the University of Pennsylvania. Kumar says the most important medical decision you can make is to choose a person who can legally make health care decisions for you if you can’t. This person is sometimes called a medical proxy or a health care agent. Naming the person is the first part of the advance directive.

“Think about the person in your life who understands you, your goals, your values, your priorities and then is able to set aside their own wishes and be a voice for you,” she says. You want someone you trust who can handle stress, in case your loved ones disagree on what to do.

5. Fill out a living will.

After you’ve chosen your medical proxy (and named a backup), you need to think about what kind of care you want to receive. There’s no right or wrong; it’s very personal. The document that helps you do that is called a living will. It’s part two of the advance directive.

A living will addresses questions such as “Would you want pain medication?”; “Do you want to be resuscitated?”; and “Would you be OK being hooked up to a ventilator?”

Kumar says she asks her patients what’s important to them and what their goals are. For some with young children, it means trying every treatment possible for as long as possible, no matter how grueling.

“They would say, ‘If you’re telling me that a chemotherapy could give me another month, I want that month. Because that’s another month I have with my 6-year-old.’ ”

Other patients might want the exact opposite. “They would say, ‘I’ve gone through a lot of treatments and I … feel I’m not having as many good days with my kids. So if the disease gets worse, I want to spend that time at home.’ ”

Kumar says even among patients who are very sick with cancer, fewer than half have had conversations about how they want to die. So talk about your wishes. Once you’ve filled out the advance directive forms, share your decisions with your medical proxy, your loved ones and your doctor.

6. Don’t forget the emotional and spiritual aspects of death.

How you want to die is personal and about much more than just the medical aspect. For some, it’s about being at peace with God; for others, it’s being kept clean. Still others don’t want to be left alone, or they want their pets close by.

Angel Grant and Michael Hebb founded the project Death Over Dinner to make it easier for people to talk about different aspects of death as they eat. “The dinner table is a very forgiving place for conversation. You’re breaking bread together. And there’s this warmth and connection,” says Grant.

Some of the emotional and spiritual questions people talk about are “You were just in a big quake and death is imminent. What are you concerned about not having done?”; “What do you want to be remembered for?”; and “If you could have any musician play at your funeral, who would it be?”

Grant says reflecting on death automatically forces you to think about your life. “That’s the magic of it,” she says.

“We think it’s going to be morbid and heavy. But what these conversations do is they narrow down our understanding of what matters most to us in this life, which then gives us actionable steps to go forward living.”

Grant doesn’t believe a “good death” is an oxymoron. “A good death is subjective, but there are some things that I have heard over and over again for many years at death dinners. … A good death is being surrounded by love, knowing you have no emotional or spiritual unfinished business.”

Complete Article HERE!

Sometimes a ‘Good Death’ Is the Best a Doctor Can Offer

Despite everything we do, we have lost so many battles with Covid-19

By Dr. Hesham A. Hassaballa

There has been so much clinician distress with the Covid-19 pandemic. So many physicians, nurses, and health care professionals have suffered physical, emotional, and moral difficulty taking care of severely sick patients. Some have even committed suicide.

As an ICU physician, I feel this firsthand and believe the reason for the anguish is that we, as critical care doctors and nurses and health professionals, are used to making a difference in the lives of our critically ill patients. Yes, we do lose some patients despite all that we do. But, for the most part, the majority of the patients we see and care for in the ICU get better and survive their critical illness.

Covid-19 has upended all of that.

Before Covid, I would not think twice about placing someone on a ventilator. It is a life-saving measure. With Covid, however, many patients who go on ventilators never come off. This is very distressing.

It is just so hard to try and try and try — spending many waking and sleeping hours — to help these patients pull through, only to have them die on you. Many times, the deaths are expected. Sometimes they are not, and those deaths are the most difficult to bear.

We are used to seeing death in the ICU. It is inevitable that some patients, despite all that we do, are going to die. With Covid, however, it is different. So many have died, and what makes it so hard is that these people are dying alone. Their families are only left to watch them die, if they so choose, on FaceTime or Skype. I’ve lost a daughter to critical illness. I cannot imagine the horror of not being able to be there at her side.

I was speaking to a fellow ICU doctor, and he told me that it seems all he is doing in the ICU is ensuring a “good death” for his patients, and this has deeply bothered him. He is not used to this amount of death. None of us are. It is very, very hard.

Is there any such thing as a “good death”?< It seems oxymoronic that the words “good” and “death” can be juxtaposed. As doctors, our whole existence is to prevent our patients from dying. So, in one sense, there is no such thing as a “good death.” To be sure, I have seen plenty of “bad deaths” in the ICU. Of course, those include patients whose death was unexpected. At the same time, there are patients who we know (despite everything we do) will not survive. In those cases, we do our best to make sure the patient does not suffer. If a patient dies while suffering pain or distress, or they get care that is not consistent with their values and wishes, then — to me, at least — this constitutes a “bad death.” But, indeed, there can be a “good death.”

None of us knows when or where we are going to die… If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome.

As a doctor, especially an ICU doctor, it is awesome to see our patients do well and survive critical illness. It gives me an indescribable feeling of warmth and joy, and it is the fuel that keeps me going for a very long time. This joy has only been amplified during the Covid crisis. Watching one of our patients — who was very sick and I thought for sure going to die — walk out of the hospital on his own made me absolutely ecstatic.

Sadly, however, that experience has been fleeting with Covid, which has been so disheartening. Yet, even in death, there is an opportunity to do good. Even in death, we can do all that we can to ensure our patients die in peace, without pain, without suffering, and with the dignity they deserverecent study found that approximately 25% of patients experienced at least one significant pain episode at some point in the last day of life. More than 40% of patients experienced delirium. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize this experience in our patients. In more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.

If getting CPR or being on a ventilator will only prolong suffering, or if either is not consistent with a patient’s wishes or values, then I — as their physician — must do everything I can to ensure this does not happen.

When I speak to families on the phone, trying to comfort them in the face of the death of their loved one, I promise this one thing: “I promise you that your loved one will not suffer. I promise you that I will make sure they are not in pain or in distress.” It doesn’t make the death of their loved one any easier, I know, but it is the absolute least I can do to make a horrible situation better.

None of us knows when or where we are going to die. Many (if not most) of us do not know what will cause our death. Those factors are beyond our control. If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome. That is a “good death.”

And if it is inevitable that a patient will die, and I can help that patient die a “good death,” then that is my job. And in that duty, there is some good, some light, in the overwhelming darkness of this pandemic.

Complete Article HERE!

Dying virtually

– Pandemic drives medically assisted deaths online

The late Youssef Cohen moved from New York to Oregon in 2016 because of its aid-in-dying law. During the pandemic, assisted dying for terminal patients has gone online.

By

The coronavirus has stripped many of a say in the manner and timing of their own deaths, but for some terminally ill people wishing to die, a workaround exists. Medically assisted deaths in America are increasingly taking place online, from the initial doctor’s visit to the ingestion of life-ending medications.

Assisted dying laws allow terminally ill, mentally competent patients in 10 U.S. jurisdictions to hasten the end of their life. Waiting periods of 15 to 20 days mean that patients with acute COVID-19 won’t likely meet the requirements of these laws.

But the move to digitally assisted deaths during the pandemic has enabled other qualified patients to continue to exercise the right to die. While telemedicine is helping some people die on their own terms, it also makes the process harder on family members, who must now take a more active role in their loved one’s final act.

Assisted dying in America

I have spent the last four years studying assisted dying in America, particularly in Oregon and Washington, which have the country’s longest-standing assisted dying laws. California, Colorado, the District of Columbia, Hawaii, Maine, Montana, New Jersey and Vermont also allow medical assistance in dying.

A quirk in these laws has enabled the process to go virtual. While extremely restrictive in most ways, U.S. assisted dying laws don’t require a physician or other health care provider to be present at an assisted death.

Assisted dying laws require two doctors to independently evaluate a patient’s request for medical assistance in dying. But patients must be physically able to ingest the life-ending medication themselves, a safeguard that ensures they are acting voluntarily.

In Canada, by contrast, clinicians typically administer the lethal dose through an injection. Normally that’s a faster, safer and more effective method. But COVID-19 concerns are compelling some Canadian providers to suspend assisted deaths.

Attending to the dying

Though U.S. physicians aren’t required to attend an assisted death, many patients and their families do have help. In 2019, according to the Oregon Health Authority, 57% of all assisted deaths in Oregon were attended by a physician, another health care provider or a volunteer.

Trained volunteers – many of them former nurses, social workers and behavioral health experts – are critical in helping patients navigate the tricky path toward an assisted death. They know which physicians are willing to see aid-in-dying patients and which pharmacies stock the necessary medications.

In the United States, doctors prescribe a compound of four drugs – digoxin, diazepam, morphine and amitriptyline – to be mixed with water or juice. Within minutes of drinking the cocktail, the patient falls asleep, the sleep progresses to a coma, and eventually the patient’s heart stops.

Volunteers help mix the medication and supervise the ingestion, allowing families to be emotionally present with a dying loved one.

Now, because of the coronavirus, volunteers are accompanying patients and families over Zoom, and physicians complete their evaluations through telemedicine, based on recommendations released by the American Clinicians Academy on Medical Aid in Dying in March 2020.

Telehealth – a health care solution long used in remote areas – has become a critical tool of the COVID-19 pandemic. But some aid-in-dying physicians have drawn on telemedicine to reach far-flung patients for years.

“My patients love telemedicine,” Dr. Carol Parrot, a physician who lives on an island in Washington, told me during a Skype interview in 2018. “They love that they don’t have to get dressed. They don’t have to get into a car and drive 25 miles and meet a new doctor and sit in a waiting room.”

Parrot says she sees 90% of her patients online, visually examining a patient’s symptoms, mobility, affect and breathing.

“I can get a great deal of information for how close a patient is to death from a Skype visit,” Parrot explained. “I don’t feel badly at all that I don’t have a stethoscope on their chest.”

After the initial visit, whether in person or online, aid-in-dying physicians carefully collate their prognosis with the patient’s prior medical records and lab tests. Some also consult the patient’s primary physician.

‘Tough and tender situations’

The pivot to telemedicine hasn’t significantly changed that process. But patient advocacy organizations and physicians say the pandemic has amplified existing problems of access to assisted dying.

“These are tough and tender situations even without COVID,” said Judy Kinney, executive director of the volunteer organization End of Life Washington, via email.

Invariably, some terminally ill patients who wish to die face barriers. Some assisted living and nursing facilities have policies against assisted dying for religious reasons.

During the pandemic, residents in these institutions who lack access to a digital device – or the skills to videoconference with a doctor – may not be able to qualify for the law, according to Dr. Tony Daniels, a prescribing physician from Portland.

Meanwhile, a family member who objects to assisted dying may more easily undercut the process when a volunteer isn’t there in person to make sure a patient’s final wishes are carried out.

Facilitating death

Dying via telemedicine can be hard even on family members who stand behind their loved one’s decision, my research finds. Without a volunteer or physician present, families must assume a more active role in the dying process.

That includes mixing the life-ending medications themselves. Pre-pandemic, many families told me that preparing the lethal cocktail would make them feel like they were facilitating – and not just morally supporting – a loved one’s death. They were glad to outsource this delicate task.

Now they don’t have that choice.

Yet the option to assist in a loved one’s final act may be a comfort in this pandemic. It allows dying people to choose the manner and timing of their own death – and ensures they won’t be alone.

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