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

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

By Dr. Hesham A. Hassaballa

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

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

Covid-19 has upended all of that.

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Dying virtually

– Pandemic drives medically assisted deaths online

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

By

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

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

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

Assisted dying in America

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

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

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

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

Attending to the dying

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

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

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

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

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

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

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

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

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

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

‘Tough and tender situations’

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

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

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

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

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

Facilitating death

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

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

Now they don’t have that choice.

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

Complete Article HERE!

How COVID-19 May Reframe End-of-Life Care Planning Engagement

The COVID-19 pandemic has renewed patient appreciation for end-of-life care planning, pushing providers to explore best practices for engaging these conversations.

By Sara Heath

For years, the concept of end-of-life care planning has been elusive to intensive care unit (ICU) providers. Not a lot of patients have engaged in these types of communications, and it hasn’t been hard to see why: end-of-life care planning is by nature a grim topic and can make a lot of people — including clinicians — feel uncomfortable.

But that’s started to change now that the COVID-19 pandemic has gripped the nation. At this point, over 100,000 people have died from the novel coronavirus, and it’s pushed end-of-life care planning as a key topic of conversation.

“The virus and the pandemic shined an important light on end-of-life care planning and the need for people who don’t have medical problems to still consider what their wishes would be. That’s because this virus can unfortunately strike folks who are healthy,” said Lauren Van Scoy, MD, a pulmonary and critical care physician at Penn State.

The number of patients coming into the ICU with an advance directive or having discussed some kind of end-of-life wishes with their family members of providers was scant prior to the pandemic. Patients and providers alike have long been uncomfortable with these types of conversations, largely because talking about death can be difficult and scary.

Per 2016 data, many hospitals don’t have much of a protocol for engaging patients in advance care planning or recording end-of-life wishes. Meanwhile, just under half of providers are uncomfortable with addressing the topic with their patients because they are unsure of what to say, the survey out of the John A. Hartford Foundation, the California Health Care Foundation, and Cambria Health Foundation revealed.

Several providers said that they struggle with identifying the proper time to broach care planning with their patients. Forty-eight percent of providers didn’t want their patients to think that they were giving up on them, and 46 percent didn’t want their patients to give up hope.

But this lack of advance care planning between patient and provider or patient and family member can have negative consequences down the line. For the patient, it decreases the likelihood she will receive hospice care at the end of her life and increases the odds she will receive intensive therapies, which can be both costly and unwelcomed by the patient.

And for the family, limited understanding of a loved one’s end-of-life care wishes can lead to serious distress.

“Care planning is so important because not only does it help the patient to receive care that’s consistent with their wishes, but it also helps the family members to have a lower-stress experience,” Van Scoy explained. “They have less psychological morbidities afterwards, and less stress related disorder.”

The data show that up to 30 percent of families who have to make end-of-life decisions experience post-traumatic stress disorder symptoms, Van Scoy pointed out, referencing a seminal study published in American Journal of Respiratory and Critical Care Medicine.

“That’s one of the things that advanced care planning can help to reduce the likelihood of, the stress related symptoms, so that’s why it’s really important for both the patient and the family,” she added.

Of course, advance care planning hasn’t totally been unheard of. In 2015, CMS said it would start paying Medicare providers for holding advance care planning talks with patients, with the goal of improving the quality and experience of end-of-life care and potentially decreasing the use of costly and intensive therapies. Increasing reimbursement for these activities potentially served as an incentive to increase engagement.

And older adults, knowing they may be nearing the end of their lives, have also been at least somewhat receptive to these conversations.

“As people get older, they’re more likely to do advanced care planning,” Van Scoy said, suggesting that this is not enough.

“As we know, medical catastrophe can happen for anyone of any age. We’re often faced with patients, particularly in the ICU, who have not had conversations about what their goals are, what their wishes are, what their preferences are. Families are often quite distressed when having to make decisions.”

But again, that trend has started to change, as more Americans face the reality that they could contract the novel coronavirus. And although COVID-19 has a pronounced impact on individuals with comorbidities, the fact of the matter is anyone could succumb to it.

“The virus has given us an opportunity to have that teachable moment to show that, whether you were diagnosed with coronavirus, or have cancer or a car accident, or some other sort of acute and unexpected illness, it’s always good to have good care planning done in advance,” Van Scoy stated.

“The coronavirus pandemic has allowed people to think about it in a new context as opposed to, ‘advanced care planning is just for old and sick people, not for me,’” she continued. “Now we’re having a conversation nationally about ventilators and ICU use and people needing emergency critical care. People are thinking, ‘gosh, I very well could end up on a ventilator.’ The coronavirus has changed the conversation to be more relevant, more pertinent, and brought it to a broader scope of Americans, not just elderly or those with illness.”

And while patients and providers alike are facing a renewed appreciation for advance care planning, Van Scoy has uncovered new strategies to make these conversations more palatable. After all, just because more patients recognize the need for advance care planning doesn’t make these conversations any less uncomfortable.

As part of her research on patient experience and communications in the ICU, Van Scoy has developed a game that brings advance care planning into the community in an agreeable way. The game, titled Hello, can be delivered in both the healthcare facility or in a community-based setting as it pushes patients to consider what is important to them at the end of their lives.

“The Hello tool is a game that allows patients and their families and friends to come together and talk in a way that’s sort of less serious and less intrusive,” Van Scoy explained. “The game features questions that are asked in a way that are easy to answer. Questions are things like ‘what music would you want to be listening to on your last day of life’ or ‘what are three non-medical facts that your doctors should know about you.’ It approaches this topic in a very soft way, but yet it’s still getting into the meat of the problem.”

And the qualitative data shows this approach has been effective, especially in traditionally marginalized populations for whom end-of-life care planning is even less prevalent. Van Scoy largely credits this to the community-based setting in which she has deployed Hello.

“We leverage those networks to get individuals set up to have these conversations in places outside the healthcare system,” Van Scoy noted. “Users are comfortable and they can lean on each other as opposed to leaning on the healthcare system, which in underserved populations have had some historic problems with trust.”

This new information about carrying out advance care planning will be essential going forward, as the COVID-19 crisis ideally renews patient and provider appreciation for these conversations. As the healthcare industry works to adapt to the novel coronavirus, understanding the best ways to address end-of-life wishes will help providers treat their ailing patients with dignity.

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!

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!

Poor communication, discrimination and lack of training

– Why LGBT people may face inequalities in palliative care

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Palliative, or end of life care can help people with terminal conditions, such as cancer, live as well as possible for as long as possible – and allow them to die with dignity. But end of life care is not a straightforward process. And for patients from the LGBT community, the process presents a whole host of barriers that they and their families may face.

Not only do many people from the LGBT community face difficulties accessing high-quality end-of-life care, they also may face issues with their care. This may sometimes be because of ignorance and prejudice against them during pre-hospital admission. It may also be due to poor communication between patients and care providers about treatment plans, judgement by staff about a patient’s family or relationships, and a failure to properly support the spiritual needs of the patient.

Many have also experienced victimisation, discrimination and personal hardship as a result of their sexual identity throughout their life, and may feel that telling a healthcare professional about their sexual identity would change their interactions or quality of treatment.

Staff may also be unaware of an LGBT patient’s particular needs or how to meet them. For example, patients who have undergone gender reassignment may have been married previously in their former gender. They might have children and grandchildren. Dealing with current partners, spouses, former spouses and children during end of life care takes particular skills, which requires specialist training. As many in palliative care want to be surrounded by loved ones, healthcare workers need to be trained to deal with these types of situations.

Many LGBT people may also hide their relationships, meaning that healthcare workers may exclude key individuals from their loved one’s end of life care. Other factors that can impact end of life care include whether an LGBT person lives alone, if they’re socially isolated, and if they face barriers to services or lack consultation. Ageism, and past negative experiences relating to their sexual orientation or gender identity, might also impact the care they receive.

Bereaved LGBT partners and spouses have also been found to experience less support during the death of their loved one. They complained of being shut out of the care process and ignored.

Healthcare professionals also aren’t typically trained to address the specific needs of the LGBT community when it comes to end-of-life care. These needs will include the need for confidentiality and communication from healthcare providers that is sensitive to their sexuality and preferences. Many LGBT people may also feel too vulnerable to disclose their sexual identity while receiving this type of care, which may make their final months lonely.

Room for improvement

Research shows that LGBT people already have lower health outcomes, partly because of ignorance of LGBT issues among healthcare practitioners. For example, they may not receive routine cancer screenings, and may not be able to access adequate healthcare services.

Sexual orientation and gender identity are also both key areas where inequality and discrimination can occur in end of life care. Poor training has been highlighted as one cause.

But many of the shortfalls faced by the LGBT community during palliative care are prohibited and protected by the Human Rights Act 1998. Article three states that no one shall be subject to torture or to inhuman or degrading treatment or punishment, while article eight protects a person’s right to privacy, respect for their sexual identity and the right to control information about their private life.

The issues addressed in articles three and eight have been interpreted by the courts as including how a person plans their end of life care. This means there could potentially be legal redress for any person who feels that their wishes and feelings relating to end of life care aren’t being taken into account by the healthcare workers looking after them.

There are two particular aspects of good end of life care that many LGBT people find are most important to them. First, they want their care to focus on their individual needs. Second, they want their partner to be accepted.

Currently, there are recommendations in place for caring for those from the LGBT community in palliative care. In order to ensure that LGBT people receive the best end of life care going forward, it will be important for healthcare workers to have better training.

Better training will ensure they can communicate properly with LGBT people about their needs and understand their situation. Training will need to include understanding equality, diversity and confidentiality, as well as understanding the unique issues LGBT people face and how this impacts end of life care. Staff or other residents should also report any discrimination to prevent it from continuing in the future.

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