Tag: Death And Dying

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I put off explaining death to my autistic son.

Covid-19 convinced me I couldn’t wait any longer.

By Whitney Ellenby

Whitney Ellenby is the author of “Autism Uncensored: Pulling Back the Curtain,” founder of the charitable venture Autism Ambassadors and a former Justice Department disability rights attorney.

Even before I uttered a word, my son knew something was off.

My flustered movements alerted him to a shift in equilibrium in the house. The statewide coronavirus shutdown had just been announced, and as I struggled to wrap my head around the profound adjustments I needed to make, the fear of a grave illness was rivaled by an entirely different threat: How would I explain the crisis to my profoundly autistic 19-year-old son?

Zack’s language and comprehension are truncated; he has no conspicuous understanding of global adversity, personal sacrifice or collective safety.

The stakes of being truthful were greater than you might imagine. I’ve gone to extraordinary lengths to ensure that Zack fully participates in his community, even forcing him to remain at indoor venues he feared such as movie theaters, restaurants and airplanes. My “inclusion by fire” methods feel vindicated by the fact that Zack regularly navigates the world with competence and zeal.

But there is one dire exception — his absolute intolerance of unexpected closures. Zack has no interest in the reason: All venues should be open according to his schedule. Delivering news of a sudden closure — of a splash park shut due to lightning, a movie sold out — is perilous. In seconds, Zack lashes out in frustration. Sometimes I absorb the blows and hold my ground to enforce upon him the reality that disappointment is a part of life; more often I scramble for alternatives to distract him.

And now I couldn’t. For a young man whose life quite literally revolves around predictable schedules and recreation, virtually everything he depended upon had been eviscerated overnight.

In March, I sat Zack down and explained: “Zack, I need you to listen to me, something very scary is happening. You know how awful it feels to be sick? Well, a sickness is spreading across the whole world, and our job is to help keep people safe. So for now, school is — closed. Movies are closed. Indoor pools are ….”

I braced for impact, but instead Zack studiously began echoing the refrain of “closed.” I was astonished. In the weeks that followed, Zack’s ability to adapt to his constricted life far exceeded my expectations and reinforced my decision to tell him the truth.

Except I had not told him the whole truth. Zack had no notion that, as he rode his bike carefree against the wind, people were dying. Zack had no concept of death. Because I hadn’t summoned the courage to explain it to him.

I’ve always considered my most important job to be arming Zack with the knowledge and experience to function as competently as possible in the world, especially after my husband and I are gone. But I have not prepared him for the fact that we will be gone. As I listened to stories of beloved mothers and fathers dying, I was gripped with heartbreak and fear — would I further postpone and hope neither of us got sick?

That felt immoral. It was time.

“Zack, I need to tell you something serious,” I began. “Many people are getting sick, and some of the people who go into the hospital to get help will not get better. They will die from this sickness.” Zack is a literal thinker who deals in absolutes and concrete visuals, not abstractions. So in response to his quizzical stare, I turned on the TV to still frames I had taped of body bags being moved into a truck.

“Zack, these bodies are ….”

“Sleeping?” he asserted, tentatively.

“Broken?” he then offered, borrowing a concept he applies to objects that I’ve reassured him would soon “be fixed.” Dreading his response, I answered, “No, they are not asleep or broken, they are dead. They will not wake up. They were too sick to be fixed. They are ….”

“Closed,” he whispered gravely.

A huge exhale escaped me. “Yes, Zack, they are closed,” I said, explaining through tears that this happens to every person at some point, that their life comes to an end. And how, even when people die, as hard as it is, the rest of us have to keep living without them.

Zack became still. His countenance darkened as he processed my words — and then suddenly he lashed out. But the target was the TV, with its cruel, wintry images of death, as Zack smashed his fists into the screen and even his own head. The universe was once again disordered and the outcome unacceptable to him. I interrupted the exertion not to comfort Zack but to redirect his blows toward a wall sturdy enough to absorb them. He was incredibly infuriated, which felt entirely appropriate. More essentially, with each strike I was certain the excruciating lesson was being slowly, agonizingly absorbed.

So far, Zack has not openly made the intellectual leap that this state of permanence, which is “closing” the lives of so many right now, will one day end mine and my husband’s. That he will one day lose us, but must persist. Now is not the time to make that linkage, but it will come. Engraved into his consciousness of how the world operates is a new notion that while some closures are temporary and fixable, others are unchangeable. For now, that is enough.

Complete Article ↪HERE↩!

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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↩!

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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↩!

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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↩!

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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↩!

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Unmasking the fear of death with Tolstoy

During this pandemic when we’re feeling the anxieties of infection and death, The Death of Evan Ilyich (1886), by Leo Tolstoy gives us the message of our capacities to respond to the fear of death in ways we never knew we could. It reminds us that, fear isn’t real. Human, as a species, is not defined by fear.

By Nayan Sayed Jibon

YES, we’re scared. We’re on the edge, unable to think properly. Our focus flutters and floats around flea-like from one update to the next. We follow the news, because we feel we should but soon we wish we hadn’t, because it’s sad.

The thought of dying alone with a respiratory sickness is so horrifying to hide under our masks. We are separated from one another but we can’t keep our distance from the fear of death. This led me to question, how can I accept my own mortality, so that I can live my life to the fullest during this terrifying situation?

Then I found a novella The Death of Evan Ilyich (1886), by Leo Tolstoy which helped me not only to understand the author’s philosophy towards death but also the psychology behind it. As a result, I could gather some emotional courage to embrace my fear of death during this COVID-19 pandemic situation.

Leo Tolstoy (1828-1910), a Russian writer, is regarded as one of the greatest authors of all time. He is best known for his novels like War and Peace (1869) and Anna Karenina (1877). But due to his unusual firsthand experiences of death and dying, he also wrote extensively about the inevitability of death for our understanding of life itself. Some of his most memorable meditations on this theme are found in his novella The Death of Ivan Ilyich. In the novella through the story of a dying Russian judge, Tolstoy successfully narrates the different episodes of ‘dying’ some eighty years before its discovery by Swiss-American psychiatrist Elizabeth Kubler Ross. In her book On Death and Dying (1969) Kubler Ross outlined five stages that a dying individual goes through.

The Death of Ivan Ilyich, as its title suggests, depicts the death of an ordinary middle-aged Russian judge, but it is also about a man who overcame it. Like everyone in his social circle, Ivan Ilyich lives a superficial life and dedicates his life to climbing the social ladder and seeking the bliss which he believes is found at the top. Initially he was contented with his life but gradually he becomes unhappy as his marriage deteriorates so he starts ignoring his family life and focuses on becoming a magistrate. 

One day he falls awkwardly upon hanging curtains for his new home and becomes ill. Doctors offer all kinds of diagnoses and medicines but he cannot recover and within some weeks, Ivan Ilyich could see that he is a bedridden dying man. In his death bed Ivan’s main source of comfort becomes his servant Gerasim. He is the only person in the house who does not fear death, and the only one other than his own son who seems to show compassion for him.

As Ivan’s interaction with Gerasim becomes deeper, Ivan begins to question the how can he accept death without being unhappy? Gerasim guides Ivan in his last days, and allowed him to realise the difference between a superficial and an authentic life and how to accept death with ease. He says, ‘We shall all of us die, so why should I grudge a little trouble?’ Apart from the philosophical thought, Tolstoy also shows the psychological stages of a dying person.

According to Ross, denial is the initial emotional response to the knowledge of death. In this stage people often say, ‘No, not me. It can’t be!’ From chapter five we find Ivan Ilych gets the idea that he is going to die but he could not get used to the idea and immediately denies it. In chapter six he says, ‘It can’t be me having to die. That would be too horrible.’ After a while, he entered the stage of anger, blaming god for imposing this kind of misery and pain to him, and expecting an answer, ‘Why hast Thou done all this? Why hast Thou brought me here? Why, why dost Thou torment me so terribly?’

Then he started talking to god asking for the meaning of his life. During this ‘bargaining’ period he started to look back and after much argumentation with himself he realises that he may not have done anything meaningful during his whole life. Consequently he enters into the ‘black hole’ of depression. He learns that it is impossible to turn back and fight against the forces, now he can only wait for the moment.

Finally, the door of acceptance was opening in his scared mind, with his understanding of the inevitability of death. Ivan Ilyich during this stage realises that he has not lived his life in the best way and he was dead long before he was called to die. He was materialistically driven and blinded most of his life by shallow pleasures. He eventually finds solace from the selfless love and kindness from his family and servants and embraces death. ‘Death is finished,’ he said to himself. ‘It is no more!’ 

Therefore, The Death of Ivan Ilych is Tolstoy’s parable representing the mystery that living well is the best way to die well. Tolstoy tells us that we don’t fear death, we fear life because we feel that we don’t live our destined time on earth as we were supposed to. It also echoes with the Stoic philosopher Marcus Aurelius who told us that ‘it is not death that a man should fear, but he should fear never beginning to live’.

During this pandemic when we’re feeling the anxieties of infection and death, this story gives us the message of our capacities to respond to the fear of death in ways we never knew we could. It reminds us that, fear isn’t real. It is like wearing the uncomfortable personal protective suit around our mind and feeling we’re being protected.

In doing so, we have allowed this fear into our house, our head, and our heart. It’s circulating like the ghostly virus — looking for prey in every thought and every action. But we must remember that human is not defined by fear. We are a hope and a faith-driven species that seeks to live life to the fullest and not die.

Complete Article ↪HERE↩!