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!

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!

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.

Complete Article HERE!

I’m an oncologist with terminal cancer, and I support medical aid in dying.

Here’s why.

As my cancers progress, I want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death.

By Dr. Tom R. Fitch

Remarkable advances in medical care are helping us live longer. But that means there also are an increasing number of people living with advancing serious illness.

The vast majority understand they are living with a terminal condition, yet they and their families are unprepared for the final stages of life. Relatively few have had discussions with their physicians about their prognosis and end-of-life care options. Their wishes and goals are not discussed, and no meaningful informed consent regarding further disease-directed treatments is provided.

“Let’s try this,” becomes the default recommendation, and patients are commonly led down a path of relentless disease-directed therapies of limited to no benefit. Tragically, more treatment too often results in more suffering and shortened survival.

With the expert end-of-life care currently available, dying and death can be meaningful and peaceful for many. But to believe all deaths are “natural” – peaceful and without suffering – is just wrong.

I cared for patients with cancer for more than 30 years and increasingly provided palliative and hospice care over the final 17 years of my career. I saw agonizing deaths despite my best efforts, and it was not rare for patients to ask me how I might help accelerate their dying. That, however, was not an option in either Minnesota or Arizona where I practiced.

Patients must understand their options

Now, I too am faced with terminal illness. I have multiple myeloma and non-Hodgkin’s lymphoma, and despite aggressive care, I have not achieved remission. My cancers are incurable.

I contemplate dying and my death and those thoughts include consideration of medical aid in dying. I do not know if I would ever self-administer a lethal dose of medications, but I pray that the option is available for me.

I do know that we must help patients and families overcome the taboo of discussing their prognosis, dying and death. We need to facilitate meaningful end-of-life care conversations among patients, their families and health-care providers; promote the completion of advance directives; and encourage discussions of patients’ wishes, goals and values.

Patients and families must be informed of the many end-of-life care options available – including the expertise of palliative care and hospice providers, discussions regarding the possibility of stopping disease-directed therapies, withholding or withdrawing more advanced supportive care and/or devices, voluntarily stopping eating and drinking, and palliative sedation.

Patients near the end of their life also should have access to medical aid in dying (MAID).

What medical aid in dying laws do

I fully respect the conscience of those who oppose MAID; they are opposed for passionately held personal beliefs and values. I simply ask that they similarly respect my strongly held beliefs and values.

Guidance in the American Medical Association Code of Medical Ethics understands this divide: “it encompasses the irreducible moral tension at stake for physicians with respect to participating in assisted suicide. Supporters and opponents share a fundamental commitment to values of care, compassion, respect, and dignity; they diverge in drawing different moral conclusions from those underlying values in equally good faith.”

MAID is now legal in nine states and the District of Columbia, available to more than 70 million residents. After nearly 50 years of real-word experience, there has been no evidence of the “slippery slope” or “increased societal risk” opponents routinely cite.

We have seen no indication of a heightened risk for women, the elderly, poorly educated, the disabled, minorities, minor or those with mental illness. There has been no rising incidence of casual deaths and no evidence to suggest that MAID has harmed the integrity of medicine or end-of-life care.

MAID laws clearly provide adequate safeguards and allow for the position of dissenting physicians. The laws respect their conscience and give the right to any physician not to participate.

This is patient-centered care

Those of us who support MAID are asking for the same – respect for our conscience and considered judgment. We do not believe we are doing harm. We are caring for a competent adult who has a terminal illness with a prognosis of six months or less. We are providing patient-centered care consistent with the patient’s wishes, goals, beliefs and values – helping that patient avoid protracted, refractory and avoidable suffering.

One false narrative espoused by opponents – that “participation in MAID is suicide” – needs to be addressed. Participants do not want to die. They have a progressive terminal illness, and meaningful, prolonged survival is no longer an option.

They have full mental capacity with an understanding of their disease, its expected course and their prognosis. They have the support of their family. They feel their personhood is being destroyed by their illness, and they want their death to be meaningful and peaceful.

None of this is true for people who die by suicide.

Personally, I no longer struggle with the ethics, morality and other controversies surrounding MAID. Ethical principles and moral laws alone are just not sufficient to answer the complex questions surrounding an individual’s dying and death.

Our diverse country and our Constitution forbid us from imposing our own religious and faith beliefs on others. When we try, we are forcing others to conform to our beliefs and we are turning a blind eye from truly seeing the very real human suffering that is in front of us.

It is devastating for patients if we ignore their life stories, their family, their culture, and the impact of their disease and treatment on their life and well-being. The value of their life, as they define it, has vanished and they want to die on their own terms.

This is not a challenge to God’s divine sovereignty but a challenge to the disease itself. Patients are vowing that it will no longer be in charge.

As my cancers progress, I too want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death. I desperately want to avoid recruitment into that borderland where I would vegetate as neither here nor there.

I ask for your unconditional trust and I ask that those opposed to MAID for themselves, respect my prayerful discernment and personal requests for end-of-life care as I believe it is consistent with my needs, beliefs and values.

Complete Article HERE!

Is It Possible to Have a Good Death With COVID-19?

Dorothy “Poogie” Wyatt Shields, who had Parkinson’s disease, declined to have surgery after she broke her hip in March. She just wanted to go home, so she and her family opted for home hospice ― even though she tested positive for the coronavirus.

By Melissa Bailey

After she landed in the hospital with a broken hip, Parkinson’s disease and the coronavirus, 84-year-old Dorothy “Poogie” Wyatt Shields made a request of her children: “Bring me home.”

Her request came as hospital patients around the world were dying alone, separated from their loved ones whether or not they had COVID-19, because of visitation restrictions aimed at curbing the spread of the virus.

Bringing home a terminally ill patient with COVID-19 bears extra challenges: In addition to the already daunting responsibility of managing their loved one’s care, families must take painstaking precautions to keep themselves safe.

Julia Shields, 53, one of Poogie Shields’ four children, said she had reservations about the risk of infection and how it might affect her family’s health and ability to care for her mother. “I didn’t want to bring my mom here, and have it where we’re all of a sudden collapsed in bed ourselves and can’t give her pain medicine and can’t take care of her,” she said.

But she and her siblings were determined to honor their mother’s wishes. So they stocked up on personal protective gear and converted the mudroom of Julia’s Greenwood, Virginia, home west of Charlottesville into a solarium where her mother could be closer to family.

Julia said she wasn’t sure how long her mother would survive; it could have been a few days or even a few months at her home. “She’s such a fighter,” she said.

Poogie Shields, a former guidance and addiction counselor, had an appetite for adventure, be it camping on the Appalachian Trail or moving her family to Paris for a year while writing a master’s thesis. After raising her children in Virginia, she set off to do volunteer work, helping homeless teenagers in Florida and pregnant women facing addiction in Washington, D.C.

But over the past 20 years, Parkinson’s disease gradually limited what she could do, and three years ago she moved into an assisted living community in Crozet, Virginia, about 5 miles from Julia’s home. At first, she walked all over the campus, taking yoga classes and playing trivia with friends. But in recent years, she could manage only short distances with a walker, and Parkinson’s, a progressive nervous system disorder, was affecting her voice, according to her daughter.

“She was the person who had the most interesting thing to say in the room,” Julia said. “It was sad. You just couldn’t hear what she had to say.”

In mid-March, as the pandemic spread, Shields spiked a fever and got tested for the coronavirus. On March 22, while self-isolating and awaiting her test results, she broke her hip and was taken to the UVA Health System University Hospital.

In the hospital, a rapid-results test came back positive for COVID-19.

The coronavirus wasn’t killing her: Her symptoms had largely subsided, and she wasn’t in respiratory distress, said Dr. Lily Hargrove, a private practice physician who had treated Shields for 15 years and advised her family.

The biggest problem was her hip. Surgery was an option, but Shields had already endured “an excruciating loss of independence” over the past two years, Hargrove said. Recovery from surgery — two to three months in a rehab center with no visitors because of efforts to slow the virus in most facilities — “would have been a nightmare,” Hargrove said, and would not have returned her to normal functioning. She said she and Shields had reached an understanding during the past year that her disease had progressed so far that “we were beyond the point of fixing things.”

Julia and her siblings consulted a palliative care specialist and decided to pursue hospice. The hospital and hospice staffs told the family “this was not to be taken lightly — not only her dying, her potential pain, and also us getting sick,” Julia said.

The family signed up with Hospice of the Piedmont, which is one of about 75 community-based, not-for-profit hospices in the National Partnership for Hospice Innovation (NPHI). Dr. Cameron Muir, NPHI’s chief innovation officer, said most hospices in the group have treated or prepared to treat COVID patients, despite the added risks for workers.

Many hospices are facing shortages in staffing and protective equipment due to the pandemic, prompting concern from some advocates that patients won’t get the care they need. Muir said hospices in his group have bulk-ordered protective equipment together.

With the pandemic, most NPHI hospices are seeing an increase in the number of people they’re caring for at home, Muir said, because hospitals are “eager to get people with advanced illness home if possible” to make room for COVID patients.

“Absolutely the safest place for frail elderly without COVID is in the home,” said Muir, who is also chief medical officer of Hospice of the Piedmont, and “if you’re COVID-positive, the best place to be quarantined is at home.”

Hospice of the Piedmont has shifted to telehealth when possible and has stocked up on protective gear so that staff and families can safely treat COVID patients, said CEO Ron Cottrell.

While the hospice gathered equipment, Julia and her family set to work creating a sterile-yet-welcoming solarium in her home. They cleared out the raincoats and lacrosse sticks from Julia’s mudroom. They rolled in a hospital bed next to a window overlooking the deck and hung a picture Julia’s daughter had painted.

They filled the windowsill with fresh daffodils. Julia’s husband and two children, 18 and 20, went to stay at a friend’s empty house, while one of her sisters moved in to help her care for their mother.

On March 25, Poogie Shields came home, sedated with pain medication. Out the window, she could see a redbud tree in bloom and, soon, the faces of her visiting grandchildren and other relatives.

Julia, a tax preparer, and her sister, an archaeologist, got into a rhythm of suiting up like hospital employees — in scrubs, gloves, shoe covers, masks and eye protection — every time they entered the room.

Their time together was peaceful, Julia said. Other family members hung out on the deck, 6 feet apart, just outside the window. Her sister brought an iPad to coordinate video calls and read aloud dozens of emails and cards.

“There was a fairly reasonable feeling of normalcy,” Julia said.

Over the course of several days, Poogie Shields became unable to eat, drink or swallow medication. With Hargrove’s advice, Julia and her sister managed her fentanyl patches and slipped morphine under her tongue.

As her mother began to lose awareness, Julia softly sang Episcopal hymns — “Abide With Me,” “Breathe on Me, Breath of God” — to comfort herself and her mother, just in case she could hear.

Poogie Shields’ last day “was very peaceful,” Julia said. “It was such a beautiful day.” Relatives had all come by to see her. There was “no anxiety about anything that we needed to figure out,” no last unburdening of unresolved feelings.

Julia said she and her sister were with their mother as she took her last breath at 8:30 p.m. on March 28. Hospice staff came to the house about three hours later. In the meantime, Julia said, “nothing needed to be done. It was just very calm.”

Hargrove said that in her 20 years of practice, “I’ve never had a patient die with such reported ease and grace.”

“The two daughters were extraordinarily brave,” she said. “They were committed to honoring their mom’s wishes.”

After their mother’s death, Julia and her sister disinfected the house before Julia’s family moved back in. No one in the family has become sick with COVID-19.

For other families, bringing COVID patients home might not be possible, especially if someone in the house is at a higher risk of serious complications from the virus, Hargrove noted.

“I would hate to have someone who was unable to bring someone home, who was dying of COVID-19, to think that they had somehow failed that person,” Hargrove said. “I would ask that people find grace and compassion for themselves if this is not available for them.”

Complete Article HERE!

I Accept Death.

I Hope Doctors and Nurses Will, Too.

Bodies being moved into a refrigerated truck outside of Wyckoff Heights Medical Center in Brooklyn, in April.

A lesson from hospice care might help.

By Theresa Brown

Nurses crying. That’s what I hear from the front lines treating Covid-19 patients. A nurse will begin the shift crying and end it crying. Crying. And we are not a profession that cries easily.

“Untenable” is how the sister of Dr. Lorna Breen, a physician in New York who died by suicide in late April, described her sister’s work situation. She was right. In hospitals with Covid-19 patients, understaffed clinicians often lack sufficient personal protective equipment and tests for the virus, and they fear for their own lives. These conditions would wear on anyone. But they amount to a staggering burden for doctors, nurses and health workers of all kinds whose deeply ingrained duty is to save the lives of their patients.

These medical workers remain devoted to curing and easing the pain of the desperately ill. But what can be done about their pain? Their feelings of failure? Frontline clinicians all over the country are experiencing anxiety, insomnia, a sense of acute inadequacy, and feelings of being betrayed by hospital administrators. Many will likely end up with PTSD. Helplessly watching so many people die, especially when many of them die without their loved ones present, is professionally “untenable.”

We know there is no universally effective treatment for the sickest Covid-19 patients. But their deaths are clearly not the fault of their caregivers. Is it possible to ease clinicians’ burdens so that they feel less personally responsible when these patients die? I believe that another type of care situation, that of a hospice, may offer some lessons.

The most fragile Covid-19 patients are not unlike hospice patients: There is no cure for their condition. While they differ from hospice patients — their deaths often come on suddenly and cannot be foreseen — clinicians might more easily make peace with their deaths by viewing them through a hospice lens.

Even though we are all going to die, death fits uneasily into the world of health care. Fundamentally, health and healing apply to the living, not the dying or the dead, and helping the living get better is why most nurses and doctors got into this work. When I worked in oncology, I saw this principle acted out by physicians who viewed death as failure, and nurses who equated talking honestly about bad prognoses with destroying patients’ hope.

Hospice care approaches death very differently. Practicing as a nurse in home hospice, I understood that patients were going to die. The goal was for them to have the best life possible for as long as possible and to die with minimal distress. Some people associate hospice with “giving up” on dying patients, but that is mistaken. Hospice staff do not hurry death along. Rather, hospice clinicians concede that curative treatment either does not exist for, or has been declined by, the patient, and accept that patients will die under hospice care.

As a hospice nurse, I managed symptoms — pain, trouble breathing, delirium — treated wounds, listened to stories from the past and acknowledged hopes and fears for the future. My intention was that all of my patients would leave this earth without suffering, and though that wasn’t always possible, I tried.

People often say that hospice nurses are angels. I tended to demur and say, “Nope, I’m human.” What the praise shows, I think, is that being comfortable with death is unusual. “Comfortable” is the wrong word: I accept death. I accept its inevitability, but also its importance. Death is the end of each person’s time on earth; it is a privilege to care for people in that moment. I embrace the cycle of life while recognizing the sadness of every death.

(That acceptance is somewhat conditional, though. Two and a half years ago, when I was diagnosed with breast cancer, I chose to take a leave from hospice work. My diagnosis brought the cycle of life a little too close.)

What’s more, a century ago, all of us would have been much more familiar with death than we are now. There were no high-tech emergency departments or I.C.U.s; most people died at home. Modernity made it possible to hide death in hospitals, behind beeping machines and snaking tubes and wires. But now that the entire world is threatened by a previously unknown virus, death has once again come closer.

I am not suggesting that health care workers become indifferent to Covid-19 deaths, or that a certain amount of death from this disease should be callously dismissed as inevitable. No. Instead, I’m urging nurses and doctors to feel less overtly responsible when Covid-19 patients die. As a hospice nurse, I never experienced a patient’s death as failure. Some deaths seemed unjust in a universal sense, like a young mother succumbing to cancer or a dying patient saying she was denied the full scope of cancer treatments because she was black. But the trajectory toward death — I accepted it.

When a patient dies on home hospice, a hospice nurse legally pronounces the death by calling the medical examiner and getting the body released. At pronouncements I did the required paperwork, and I also helped hold, or emotionally contain, the death for everyone gathered. I witnessed the ending of a cherished life and honored loved ones’ grief.

Hospital staff caring for Covid-19 patients need someone to help them hold all the deaths. It is too much to feel responsible for so many imperiled lives, day after day, to rub up against one of the most challenging and often unacknowledged paradoxes of modern health care: Even though we work very hard to heal people, sometimes they still die.

It might be possible to plant a hospice nurse in every Covid-19 I.C.U., but frontline clinicians can also do the work of acceptance by admitting that despite their training, intelligence, tenacity and technology, patients will continue to die of Covid-19. That fact is tragic, and knowing that the mortality rate has been compounded by the failings of our health care system doesn’t help. But it is still possible that the sum of human suffering in this situation can be lessened if nurses and doctors put the blame for their patients’ deaths where they belong — on the virus, not on themselves.

Complete Article HERE!