Category: Preparing for Death

Posted on

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↩!

Posted on

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↩!

Posted on

When is the best time to talk about end-of-life decisions with your teen who has cancer?

 
BY: Kathryn DeMuth Sullivan

A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions.

“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says principal investigator Maureen E. Lyon, Ph.D., a Children’s National Hospital clinical psychologist.

“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr. Lyon. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other.”

While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care – and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions.

The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions.

The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families’ did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices.

The findings from the study can be found here in the article “Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.”

Complete Article ↪HERE↩!

Posted on

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↩!

Posted on

No time like the present

– End-of-life plans and the pandemic

By Sarah Skidmore Sell 

Coronavirus has more people addressing their end-of-life planning. And for those who haven’t, it’s a great time to take it on.

People are traditionally rather hesitant to take the steps that experts suggest — creating an advance directive, writing a will and more — in part because they don’t want to ponder their own mortality. But the coronavirus pandemic has sharpened awareness and focused concern on this front. Several estate attorneys, online legal service providers and life insurers say they’ve seen an uptick in interest since the coronavirus hit.

Consider the advice of Jenni Neahring, a kidney specialist and palliative care doctor at St. Charles Hospital in Bend, Oregon who works daily with patients with chronic and serious illnesses. She says it’s better to make these decisions before an emergency to avoid putting extra stress and urgency on loved ones if something should happen.

If a patient is unconscious, health care professionals must spend critical time hunting down relatives or friends to help determine their preferred next steps.

Things have gotten harder with COVID-19, Neahring said, as no one is allowed in the hospitals with these patients and those on ventilators cannot speak for themselves.

“It has brought into sharp relief how necessary these conversations are and how much worse it is to have to do them at the end,” she said.

Here are a few things you can do now to help you and your loved ones later:

POINT PEOPLE

Start with picking your point people: who will make medical decisions for you if you cannot speak for yourself? This person is known as the health care proxy. They will be named in a legal document known as the durable power of attorney for health care.

Then choose someone who can oversee your financial affairs, such as paying your mortgage or other bills, if you are incapacitated. This person would be given financial power of attorney. It doesn’t have to be the same person as your health care proxy.

Choose someone you know well and trust for these roles. Pick a backup as well, in case your first choice is unavailable.

WRITE IT DOWN

After you’ve addressed the health care and financial representatives, consider writing a living will, or “advanced directive.” An advanced directive says exactly what medical care you do and do not want. Each state has its own advanced directive form; they can be found at the Medicare website.

If you are having trouble getting started, check out online resources such as The Conversation Project, Prepare for your Care or AARP’s website.

Consider writing a will to let people know what to do with your assets after you die and who you choose to be guardian of any children. Without a will, it won’t be up to you who raises your kids and your estate could end up in probate, potentially causing more headaches and costs for those you leave behind.

“The takeaway is while this is a current need, it’s always a need,” said Chas Rampenthal, general counsel at LegalZoom.

Many people look at end of life planning, including wills, estates and trusts, as an issue for the wealthy, but that’s untrue, Rampenthal said.

“It’s not about how much you have, it’s about making your wishes known,” he said.

And while life insurance isn’t always considered part of end of life planning, it can be an important step to protect your family financially. Term life insurance, a policy in place for a certain period of time, works best for most families, versus whole life, which is much more expensive and complex.

“This is just prompting people to eat their vitamins and do something they should be doing anyway,” said Peter Colis, cofounder and CEO of Ethos, an online life insurance company.

GETTING HELP

It’s not a great time to meet with people in person. But estate attorney Matthew D’Emilio said that most lawyers are able to arrange phone, video or other consultations during the pandemic. Many states have provided alternatives for witnessing and signing documents to cope with the social distancing rules.

If the idea or cost of seeing an attorney is too daunting, there are many online options for legal documents, some of which provide direct consultation.

SHARE YOUR WISHES

Let your friends and family know what you want, who is in charge and what documents you have. Provide a copy of critical paperwork to your loved ones. Share an advanced directive with your physician as well.

Neahring suggests keeping the name and number of your medical decision maker in your wallet for emergencies.

And while most details will be addressed in the legal documents, some experts suggest writing a short letter reiterating your preferences and reasoning to help provide clarity and comfort to your loved ones later on.

Complete Article ↪HERE↩!

Posted on

How to design hospitals for dead and dying people

COVID-19 patients are dying alone. Is there any way to make their experience—and that of their loved ones—less horrifying?

By Erin Peavey and Sheila Ruder

The number of Covid-19 related deaths is rising, a fact accompanied by an equally horrifying truth—many of those who die will do so alone.

Visitors are typically restricted, which means that family members of some coronavirus patients are prohibited from being with them in their last days, unable to touch or hold their loved ones. This scenario is only expected to get worse. According to the Institute for Health Metrics at the University of Washington, as many as 82,000 people in the United States could die from the contagion, while other models show up to 125,000 people. Many health facilities—from traditional hospitals to makeshift alternative care sites—will have to decide how best to provide dignified end-of-life care to COVID-19 patients and their loved ones.

The two of us have collectively worked in healthcare architecture and research for more than 30 years and have worked nationally and internationally on palliative care solutions in a variety of healthcare settings. We also both recently lost loved ones. We know firsthand how important compassionate end-of-life care is. Yet existing guidelines from Centers for Disease Control on alternative care sites—the very places many acute COVID-19 patients are dying—do little to address it. Here’s how traditional and nontraditional care spaces alike can create safe, comfortable end-of-life experiences, even when resources are stretched thin.

A comfortable environment

Support privacy

Having a degree of privacy is crucial so that each patient can say goodbye to loved ones or have religious rites. This can be done in-person or, more likely these days, virtually. (Some facilities do allow a visitor for end-of-life cases, with the provision that visitors wear personal protective equipment.) Normally, patients get a private room, but many hospitals are overrun and simply don’t have the space.  Instead, hospitals and makeshift medical facilities could provide a simple curtain or a divider between beds.

Family visits

Establishing protocols for visits is important, so patients and family alike know what to expect. Facilities should clearly communicate whether visitors are allowed in person or virtually, what visiting hours are, how many visitors are allowed, and what sort of screening they need to pass. There should also be clear direction around mementos or spiritual items that family may want to pass to their loved one: Are they allowed or not? How should they be handled?

Support two-way communication

If family members are not allowed to visit physically, care centers can support other ways loved ones can say last goodbyes, such as two-way video communication, or visual contact through a protective barrier, like a window.

Positive distraction

Personalized acoustics or comforting nature sounds can go a long way toward making a patient feel comfortable. Many of the makeshift hospitals that have been built to support COVID-19 patients are bare bones and don’t support elaborate sound systems. But headphones or bed speakers can work just as well. When patients are conscious, access to sunlight, nature, or images of nature can also be soothing.

Hospice caregivers

Dedicated hospice workers can manage the caring aspect of end-of-life care when resources across the system are under siege. Staff qualified to tend to very sick patients should remain in those designated areas.

How to create a safe environment

Building dignity into end-of-life care is only part of the solution. Care facilities also have an imperative to prevent spreading the virus further. Here are some key considerations.

Medication access

Narcotic drugs should be securely stored but located so caregivers can reach them easily. The medication may be placed in a locked cabinet at a designated staff workstation near patient care areas, for instance.

Dedicated entry

For facilities that allow family members to say their final goodbyes in person, providing a dedicated entry to the space can reduce the chance of transmission. Mobile handwashing stations can also be provided throughout the facility. Donning and doffing zones should be established for any staff and family members entering or exiting the facility.

Staff accommodations

Dedicated toilet rooms and respite areas can be provided for healthcare workers. The death of a patient can be difficult for even the most experienced caregivers and they, too, need space to process their pain.

Back-of-house access

When patients die, they should be removed discreetly from the facility, through a separate exit. This is not only to preserve their dignity and avoid frightening visitors and other patients. It’s the safest approach to prevent spreading the coronavirus.

None of these are new ideas in healthcare design, but as hospitals rush to treat legions of new COVID 19 patients, they have to embrace the reality that many patients will succumb to the virus and their families will suffer. There are ways to help ease that suffering in a compassionate way.

Complete Article ↪HERE↩!

Posted on

How to prepare for death

By Peter J. Adams

The main challenge in reflecting on one’s own death is the way the various aspects of death and dying are intertwined which make it difficult to discern personal mortality.

First there is the prospect of me dying; of me entering whatever is in store at the end of my life. How long will it last? Will there be pain? What will I leave behind? How do I say goodbye? Next there is the prospect of other people dying, particularly the death of loved-ones and the painful absence their loss leaves behind. How would I cope with the death of a close friend, a partner, a child? But thinking about my dying and other people’s deaths are different. Dying is an event in life, admittedly an important event, but still one that happens within the course of life. Similarly, coming to terms with the loss of a loved-one is an important process, but it belongs to a different domain than my death.

Another temptation is to think of my death as though it is like the death of others. I imagine myself in the shoes of someone as they approach their death. Maybe it would be my soul that is absorbed into a zone of endless tranquility. Maybe it would be my body lying motionless in the coffin. I conjure up images of love-ones with shocked expressions as they are told about my death, I visualize their forlorn looks as they watch my coffin descending into the grave and I picture their reactions to constantly interacting with the spaces I now no longer occupy.

But thinking about my death in terms of what happens when others die does not fully capture what happens when I think about my own death. When I die, looking at myself from the outside, my brain will stop working, my senses will cease to operate, I will no longer have any voluntary control of my muscles, and my body will lie limp and lifeless. This is undeniably what will happen.

Looking at this from the inside is more complicated. If my brain and my body cease to function, then it makes sense to consider my emotions, my consciousness and all those aspects that make up my subjective world, as ceasing to operate as well. My consciousness surely relies on input from my senses plus the processing power of my brain, so without them it is hard to think of how consciousness might persist. I might reassure myself that my consciousness will continue in some form in another realm, but I can’t be sure. It makes more sense to say that when all the conditions for consciousness are no longer present then my consciousness will no longer be able to function.

But this is a terrible thought; a horrifying realization with alarming consequences. My consciousness is always present whenever I look out at anything in the world. I never experience anything around me without being conscious. When I am unconscious, such as when I am asleep or knocked out, I assume the world continues under its own steam, but this is an assumption which I can never fully trust. What I can be surer about is that the world and my consciousness are always paired; they are always together, each interacting with and enabling the other, and participating together in allowing what is going on around me to continue to take place.

What this throws up is the possibility that without my mind the world, and all that it contains—objects, animals, people, loved ones—will cease to exist. In other words, from the standpoint of how I experience things, when I die the conditions that enable the existence of both my consciousness and the world around me will, most likely, no longer be present. In this way, the prospect of my own death highlights the possibility of the end of everything.

The unthinkable and unspeakable nature of my death forces me to walk repeatedly down a conceptual dead-end; a dead-end which discourages any further attempts to think along the same track. Even if we were to consider it important to form some sort of relationship to my death, there is no identifiable object to connect with, there is nothing to cling on to; it stands there as a conceptual black-hole; an emptiness which we can only approach with insecurity and foreboding.

Here lies the true challenge of reflecting on my death; the idea of it as an unthinkable, unspeakable nothingness. But, despite this, thinkers, poets, and artists have, over the centuries, still had a lot to say about personal mortality. It is just too big a part of the rhythm and structure of life to be ignored.

It is, similarly, important for each of us not to turn our backs on death and, despite its unintelligibility, to seek out ways of engaging with it. What is needed is some sort of provisional handhold that allows each of us to reach out and grasp onto something that can enable us to pursue a lifelong relationship with personal mortality.

Complete Article ↪HERE↩!