Mac study looks to help families discuss end-of-life care during COVID-19

By Maria Iqbal

Long-term-care staff are so swamped with COVID-19 protocols that end-of-life discussions aren’t occurring with residents and families, says a McMaster University professor.

Sharon Kaasalainen, a professor in the school of nursing, says she’s hearing from families that they’re feeling excluded from decisions about their loved one’s care.

“Compassionate care is missing because it’s all around public health protocols,” she said, noting the absence of these conversations is causing “serous concerns.”

Kaasalainen recently met with the Ontario Long Term Care Association and other long-term-care leaders to raise the issue. The point of compassionate care, she says, is to help people become more comfortable talking about death and supporting families through that process.

Kaasalainen’s research involves helping facilitate conversations about end of life in long-term care. She recently received funding to adapt her research for COVID-19, including by developing online tools to support those discussions. The goal is to help residents, families and staff prepare for decisions at the end of a patient’s life.

While COVID-19 poses major staffing challenges, Kaasalainen says palliative care also has to do with education and a home’s priorities.

Her study will pilot online tools at homes in three provinces. Locally, that includes St. Peter’s Residence at Chedoke on the west Mountain, where she expects to roll out the online resources in spring.

The tools in the study include pamphlets on conditions common to long-term-care residents to help both residents and families learn what to expect as a disease progresses.

Pam Holliday participated in an earlier part of Kaasalainen’s research. She says the tools taught her to ask care providers more specific questions about the health of her elderly mother, a resident at Shalom Village in Westdale.

Holliday says palliative care conversations can help even before a person’s death. In her case, her mother got sick multiple times, but bounced back.

“You try to make them better, but you try to make them enjoy what they have,” Holliday said about the approach.

She adds that the resources are particularly helpful during COVID-19, when there are restrictions on visits to long-term care.

“We’re totally reliant on staff communicating any changes with us,” Holliday said. “It’s (about) asking the right questions.”

Kaasalainen says care conversations can also include the type of music a person would like to hear when they’re dying and which loved ones are with them. But avoiding the discussions affects the quality of care during a patient’s final days and how families cope after a death.

“We’re seeing families very distressed, having to make decisions unprepared, and it leads to poor bereavement,” Kaasalainen said. “They have these lingering feelings of guilt and stress.”

In March, Kaasalainen is also planning to launch a national community of practice with the Canadian Hospice Palliative Care Association. It would bring together researchers, care providers and families in long-term care to discuss palliative care.

Her hope is to see families involved in care decisions feeling better prepared.

“The goal really is good death, peaceful death and families feeling guilt-free and prepared for death when it happens.”

Complete Article HERE!

Dying in a Leadership Vacuum

Covid-19 has created a crisis throughout the world. This crisis has produced a test of leadership. With no good options to combat a novel pathogen, countries were forced to make hard choices about how to respond. Here in the United States, our leaders have failed that test. They have taken a crisis and turned it into a tragedy.

The magnitude of this failure is astonishing. According to the Johns Hopkins Center for Systems Science and Engineering,1 the United States leads the world in Covid-19 cases and in deaths due to the disease, far exceeding the numbers in much larger countries, such as China. The death rate in this country is more than double that of Canada, exceeds that of Japan, a country with a vulnerable and elderly population, by a factor of almost 50, and even dwarfs the rates in lower-middle-income countries, such as Vietnam, by a factor of almost 2000. Covid-19 is an overwhelming challenge, and many factors contribute to its severity. But the one we can control is how we behave. And in the United States we have consistently behaved poorly.

We know that we could have done better. China, faced with the first outbreak, chose strict quarantine and isolation after an initial delay. These measures were severe but effective, essentially eliminating transmission at the point where the outbreak began and reducing the death rate to a reported 3 per million, as compared with more than 500 per million in the United States. Countries that had far more exchange with China, such as Singapore and South Korea, began intensive testing early, along with aggressive contact tracing and appropriate isolation, and have had relatively small outbreaks. And New Zealand has used these same measures, together with its geographic advantages, to come close to eliminating the disease, something that has allowed that country to limit the time of closure and to largely reopen society to a prepandemic level. In general, not only have many democracies done better than the United States, but they have also outperformed us by orders of magnitude.

Why has the United States handled this pandemic so badly? We have failed at almost every step. We had ample warning, but when the disease first arrived, we were incapable of testing effectively and couldn’t provide even the most basic personal protective equipment to health care workers and the general public. And we continue to be way behind the curve in testing. While the absolute numbers of tests have increased substantially, the more useful metric is the number of tests performed per infected person, a rate that puts us far down the international list, below such places as Kazakhstan, Zimbabwe, and Ethiopia, countries that cannot boast the biomedical infrastructure or the manufacturing capacity that we have.2 Moreover, a lack of emphasis on developing capacity has meant that U.S. test results are often long delayed, rendering the results useless for disease control.

Although we tend to focus on technology, most of the interventions that have large effects are not complicated. The United States instituted quarantine and isolation measures late and inconsistently, often without any effort to enforce them, after the disease had spread substantially in many communities. Our rules on social distancing have in many places been lackadaisical at best, with loosening of restrictions long before adequate disease control had been achieved. And in much of the country, people simply don’t wear masks, largely because our leaders have stated outright that masks are political tools rather than effective infection control measures. The government has appropriately invested heavily in vaccine development, but its rhetoric has politicized the development process and led to growing public distrust.

The United States came into this crisis with enormous advantages. Along with tremendous manufacturing capacity, we have a biomedical research system that is the envy of the world. We have enormous expertise in public health, health policy, and basic biology and have consistently been able to turn that expertise into new therapies and preventive measures. And much of that national expertise resides in government institutions. Yet our leaders have largely chosen to ignore and even denigrate experts.

The response of our nation’s leaders has been consistently inadequate. The federal government has largely abandoned disease control to the states. Governors have varied in their responses, not so much by party as by competence. But whatever their competence, governors do not have the tools that Washington controls. Instead of using those tools, the federal government has undermined them. The Centers for Disease Control and Prevention, which was the world’s leading disease response organization, has been eviscerated and has suffered dramatic testing and policy failures. The National Institutes of Health have played a key role in vaccine development but have been excluded from much crucial government decision making. And the Food and Drug Administration has been shamefully politicized,3 appearing to respond to pressure from the administration rather than scientific evidence. Our current leaders have undercut trust in science and in government,4 causing damage that will certainly outlast them. Instead of relying on expertise, the administration has turned to uninformed “opinion leaders” and charlatans who obscure the truth and facilitate the promulgation of outright lies.

Let’s be clear about the cost of not taking even simple measures. An outbreak that has disproportionately affected communities of color has exacerbated the tensions associated with inequality. Many of our children are missing school at critical times in their social and intellectual development. The hard work of health care professionals, who have put their lives on the line, has not been used wisely. Our current leadership takes pride in the economy, but while most of the world has opened up to some extent, the United States still suffers from disease rates that have prevented many businesses from reopening, with a resultant loss of hundreds of billions of dollars and millions of jobs. And more than 200,000 Americans have died. Some deaths from Covid-19 were unavoidable. But, although it is impossible to project the precise number of additional American lives lost because of weak and inappropriate government policies, it is at least in the tens of thousands in a pandemic that has already killed more Americans than any conflict since World War II.

Anyone else who recklessly squandered lives and money in this way would be suffering legal consequences. Our leaders have largely claimed immunity for their actions. But this election gives us the power to render judgment. Reasonable people will certainly disagree about the many political positions taken by candidates. But truth is neither liberal nor conservative. When it comes to the response to the largest public health crisis of our time, our current political leaders have demonstrated that they are dangerously incompetent. We should not abet them and enable the deaths of thousands more Americans by allowing them to keep their jobs.

Complete Article HERE!

How to survive a pandemic

— by a gay man who’s lived through one before

By

From the number of complaints I’m hearing of pandemic fatigue and the widespread resistance to simple precautionary measures such as wearing a mask at the grocery store, it’s clear to me that many people don’t fully appreciate what the gay community has been dealing with for the past 40 years and don’t understand how we survived the AIDS epidemic.

At the risk of over-sharing, here’s a snapshot of what it was like to have come of age in the midst of a sexually transmitted and deadly virus.

We learned how to protect ourselves and one another by practising safer sex. We started using condoms, for which gay men had previously had no use.

And we did so not just for a few short months, but for decades.

Over the years I’ve had boyfriends and lovers and one-night-stands with men whose names I’ve long since forgotten, and I used condoms with all of them.

I had casual sex with strangers in bathhouses and in the backrooms of leather bars and I used condoms. I had sex in parks and parked cars and I used condoms.

I had sex when I was sober and I had sex when I was too drunk to stand up or even see straight, and nonetheless I somehow managed to use condoms.

I had sex with men who warned me that they were HIV-positive and with men who assured me that they were HIV-negative, and in either case I used condoms. I worked on the assumption that anyone and everyone might be infected – myself included – and I used condoms.

“We did this because we knew that unprotected sex could be fatal”

I had sex with the same man hundreds of times over the course of a 20-year relationship and we used condoms every single time, except for a very brief attempt at monogamy after 15 long years of endlessly discussing trust and testing and accountability, after which we decided that it would be easier and less stressful not to talk about it anymore and to just go back to using the damn condoms.

Occasionally condoms broke or came off, or I slipped up and put myself at risk, after which I lived in a state of anxiety for up to six months waiting for reliable antibody test results.

Then I renewed my promise to myself to be more careful, to do better.

We did this because we knew that unprotected sex could be fatal. We did this as we mourned and buried friends and co-workers and ex-lovers and attended more funerals than any young person should ever have to.

Whenever I needed a reminder of the importance of safer sex, all I had to do was look at the photograph that my older lover kept taped to his fridge, of a dozen of his closest friends at a birthday party in the early ‘80s. All of them so young, all of them so handsome. All of them dead by the time we met.

An entire generation of vibrant, talented men cut down in their prime, caught off guard by an emerging disease, wiped out by an invisible enemy.

‘We educated ourselves and the community’

We suffered from survivor guilt, wondering how and why we survived when so many had perished. We experienced anticipatory grief, wondering which of us would be next. At times we were nearly paralyzed with fear. Still we soldiered on.

We transformed our fear and grief into action by volunteering and fundraising. For years on end, every social event and drag show and gay bingo night involved selling raffle tickets and passing a bucket to scrape together donations.

We delivered meals to people too weak to cook for themselves and we visited the dying in hospices and palliative care wards and we stitched memorial quilts to commemorate those we’d lost.

We organized an annual AIDS Walk to support people living with HIV and we marched in the annual Pride Parade to remind ourselves and the world that we were still here and that we deserved the same rights as everyone else.

We educated ourselves and the community. My colleagues and I attended national and international AIDS conferences and created educational materials and conducted sexual health workshops. I coordinated a small group of dedicated volunteers who distributed literally millions of free condoms wherever men met for sex.

We were on a mission: every location and every interaction was another opportunity to promote HIV prevention.

“We trusted doctors and scientists”

We made weekly rounds of smoky bars with a skateboarding drag queen dressed as a nun and we sat in steamy bathhouses and talked to naked strangers about their sexual activities.

Late at night after the bars closed we cruised public sex environments with a bagful of condoms and a fistful of referral cards. We educated closeted men cheating on their wives and girlfriends, referring them to anonymous HIV testing sites and confidential counseling services.

We distributed condoms and clean needles to street kids and hustlers and transgender sex workers and injection drug users, and we collected untold thousands of used syringes for safe disposal.

We spoke to students of all ages and to young offenders in juvenile detention and we sat in healing circles in maximum-security penitentiaries with convicted rapists and murderers and encouraged them to keep each other safe.

We trusted doctors and scientists, even as the findings and recommendations changed. For years we used condoms and lubricants containing Nonoxynol-9 because health authorities told us that it might help prevent the spread of HIV, and then we stopped using it when studies showed that it actually increased the risk of infection.

We didn’t freak out or give up or give in to conspiracy theories and stop trusting science; instead we adjusted our behaviour as new and sometimes contradictory data became available.

‘To stay safe, to stay strong’

We told each other to stay safe, to stay strong. We put up posters encouraging everyone to “Be Here for the Cure.” Those of us with HIV took highly toxic pharmaceuticals for years and willingly participated in clinical drug trials until more effective and less damaging antiretroviral therapies eventually transformed HIV into a manageable illness.

Those of us who were as yet uninfected signed up for Phase III vaccine trials, allowing multinational pharmaceutical companies to inject us with experimental vaccine candidates, putting our bodies at risk for the greater good.

We told each other to be patient, that an effective vaccine would be available within a few years, never imagining that decades later the world would still be waiting.

We did all of this with insufficient government funding, with insufficient media attention and with insufficient support from our families of origin, while politicians largely ignored our plight and religious leaders preached that we got what we deserved and hateful bigots picketed our funerals with signs saying “God Hates Fags” and most people were simply oblivious to what was happening because it wasn’t happening to them.

“Normal wasn’t what we wanted; we wanted things to be better

We didn’t whine about the inconvenience the virus was causing. We didn’t demand that the government tell us exactly how much longer the pandemic would last, or complain that we just wanted everything to go back to normal. Normal wasn’t what we wanted; we wanted things to be better.

We took to the streets to demand civil rights and adequate research funding and more effective treatment options, not to demand that hairdressers and nail salons re-open.

I’m 53 years old and I have been successfully managing to avoid contracting and spreading a potentially deadly virus not just for the past few months, but for my entire adult life.

I first heard about AIDS when I was an adolescent, back when it was tentatively known as GRID: Gay-Related Immune Deficiency. I saw a small story in the local newspaper about gay men in San Francisco and New York dying from a mysterious new illness, and even though I had never been to San Francisco or New York and even though I was too young to have had sex and had no one to talk to about being gay, I thought to myself: I better pay attention to this. I better take this seriously. Or it might kill me.

“I took it seriously”

I’ve done things in my life of which I’m not proud, but this is not one of them: I paid attention. I took it seriously. I didn’t let it kill me. Nor did I let it stop me from having an active and adventurous sex life, but I took precautions. I stayed safe, I stayed strong.

I lived to tell the tale.

So please: wear a mask in public, especially indoors. Avoid crowds and wash your hands frequently. Listen to public health officials. Trust the science and follow the recommendations, even as they might change.

This is the new normal; it might continue for years. Prepare yourself to be in this for the long-haul. Ignore the risks at your peril, or learn from the experience of the gay community in how to effectively respond to a pandemic with no end in sight: do your small part, protect yourself and take care of each other, work together for the common good. Stay safe. Stay strong.

Adapt and survive.

Complete Article HERE!

Why we shouldn’t fear dying alone, or monothanatophobia


The sunrise burns off the morning mist over the remains of trenches in the Newfoundland Memorial Park at Beaumont Hamel on November 09, 2018 in Albert, France.

by Deirdre Pike

Despite growing up in a death-denying culture, place and time in Canada, pretty long past the days where dead bodies were openly displayed and waked at a family home instead of a funeral home, I have come as far as my 57th year (starting this week) with an openness to conversations about death and dying not normally heard among my peers.

There are many experiences that may have contributed to this. Perhaps being born in November, the Month of the Dead, just two days after Remembrance Day, had an impact. Being named after Ireland’s Deirdre of the Sorrows (not intentionally, my mom assures me) who is said to have died by suicide, perhaps by having her head smashed on a rock by the passing royal chariot (nice touch), may have played a part in my ability to banter about death more freely than others.

Becoming a Catholic, when I was 15, introduced me to ways of ritualizing death and praying for the dead just in time to help me cope with the deaths of seven of my high school peers in three separate car accidents and my stepbrother’s death by suicide a year later.

I also credit my love of excellent rock music for giving me a healthy outlook on death. Take Pink Floyd, for instance.

“And I am not frightened of dying, any time will do, I don’t mind. Why should I be frightened of dying? There’s no reason for it, you’ve gotta go sometime.”

Lying in bed (just like Brian Wilson did) as a teenager, falling asleep, high, with giant headphones blasting these lyrics into my brain, coupled with Trooper’s, “We’re here for a good time, not a long time,” has pretty much described my approach to death, and therefore life, or my approach to life, and therefore death.

It’s that approach, 14 years of parish ministry and more that I have been bringing to what’s called a “Social Innovation Lab.” In this case, the laboratory includes 25 or so palliative care clinicians, social activists, consumers, policy and system leaders, health care leaders and change agents from across Canada to concentrate for six solid days on one question: “How can we change the culture of our health system so the palliative approach, which creates a truly person-centred system, becomes the norm across the whole system?”

This “Palliative Care and Complexity Science Laboratory” is what brought me to be sitting in a circle of a dozen or so residents from a local seniors’ apartment building with three palliative care doctors, discussing monothanatophobia — the fear of dying alone. Although the word itself was brand new to me and all of the people who accepted our invitation to come and discuss it, the concept wasn’t.

We chose our topic after reading about the man who died alone in Hamilton’s social housing recently and went undiscovered for a couple of days before a woman below found some of his remains leaking into her apartment. Nobody wants that to be the story of their last days alive — or dead — on Earth.

There is strong evidence to show why we need to be more intentional about building community now and in the days ahead. Data about living situations from the 2016 Canadian census show for the first time that the number of one-person households has surpassed all other types of living situations. More than a quarter of all households were people living alone.

Applying the principles of palliative care means having conversations about living, not dying. It’s more than making sure community exists to support people in their final days of life. It’s also making sure people are connected while they’re living in a way that respects privacy yet decreases social isolation so no one dies alone.

One great read I recommend on the topic of death and dying is “Talking About Death Won’t Kill You,” by Dr. Kathy Kortes-Miller.

With an essential chapter for anyone on social media called, “Posting, Tweeting and Texting: Dying in a Digital World,” I urge you to make this a holiday gift to your family so you can “out” the conversation of death and dying to make it, as Kortes-Miller says, a logical extension of our living.”

Complete Article HERE!

Homeless and Dying in America

Facing the End of Life Alone

By Betty R. Ferrell, PhD, RN

As Homeless Persons Near the End of Life

[S]tatistics about the US homeless population are staggering. More than a million people face homelessness each year in the United States, and these individuals often have multiple complex illnesses and comorbid mental health conditions. Orchestrating care for the homeless population poses significant challenges.

Little is known about the end-of-life (EOL) experiences of homeless persons. A major gap in knowledge exists regarding the symptoms experienced by homeless persons at or near the EOL—information that would help clinicians not only manage these symptoms but also assist homeless persons with advance care planning and decision-making around death and dying.

To characterize these symptoms, Tobey and colleagues[1] surveyed homeless persons at a medical respite program who were approaching the EOL. The demographic data derived from this study speak to the distinct palliative care needs of the homeless. Sociodemographic data from this study, showing that 60% had substance use disorders and 85% abused alcohol, will greatly affect the provision of care for this population. All homeless patients interviewed reported experiencing pain, and psychosocial needs were equally significant. Nearly all (95%) of the sample had experienced the death of a loved one, 25% worried daily about their own mortality, and 75% worried that no one would even know that they had died.

Viewpoint

The palliative care needs of various subgroups of people with serious illnesses are well documented in the literature, providing data about the unique physical and psychosocial needs of patients across many diagnoses and clinical settings.[2,3,4] The study by Tobey and colleagues adds to the body of literature by describing the distinct needs of the homeless population. The findings of this study provide insight for clinicians and for health policy administrators to attempt to meet the challenging needs of the homeless.

The study’s design was commendable. Direct interviews with homeless persons helped to understand their unique needs during their last months of life. The use of a medical respite center serving the homeless provided an ideal environment for the study.

Although the study sample size was small, the findings are rich in meaning and have implications far beyond the medical respite unit where the study was conducted. These findings will also apply to the many diverse settings where homeless persons seek care: public hospitals, emergency departments or urgent care centers, Veterans Affairs hospitals, and other settings.[5,6] Continued research and clinical advances in the care of the homeless are obligations of palliative care, a field committed to comfort and respect for all patients.

Complete Article HERE!

I’m glad my friend was able to make his own end-of-life decision

Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.

[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.

My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.

Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.

The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.

I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.

I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.

At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.

All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.

The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.

This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.

If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.

My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.

Complete Article HERE!