First step to improving palliative care: change its name

There is a cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care.

The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.
The key to helping our patients die with dignity is improving the palliative care we provide, writes Priya Sayal.


Somewhere, packed inside a box of childhood memories, is a photo of 3-year-old me. Dressed in child-sized scrubs, beaming, as I grasp my uncle’s hard earned medical degree (my name delicately taped over his). With the right amount of hard work and good fortune, I am two years into medical school and on the brink of my clinical rotations at the University of Toronto Mississauga Academy of Medicine.

I am truly amazed at all the incredible advances that have been made in medicine. People with cancer live longer, women are less likely to die in labour, and robotic surgery is no longer science fiction. Friends and family often ask what the most surprising part of medical training is. They often ask what it’s like to be in an ICU or an OR for the first time, and I always thought that would be the biggest deal for me. But it’s not. What I have been most shocked about is our failure to provide people with a dignified ending of their life.

The public has been galvanized around a conversation about the legalization of medically assisted dying, an incredibly important issue. It’s our system’s formal acceptance of a person’s right to die. It’s a step forward – one that I would argue is necessary, but not sufficient, to make dying with dignity the rule, as opposed to the exception. Alone, it applies to a small group within the population of terminally ill patients, and of those, not all will elect to utilize the service. We have renovated the roof of a building with a shaky foundation. That foundation is palliative care – a type of care all patients with terminal and chronic illness should be receiving. The key to helping our patients die with dignity is improving the palliative care we provide.

The World Health Organization defines palliative care as an approach that improves the quality of life of patients, and their families, when faced with the challenges of life-threatening illness. It strives for early identification, assessment, and treatment of pain and other problems – whether physical, psychological, social, or spiritual. Interestingly and notably, it makes no mention of restriction to the final days of life, yet that is what it has come to be associated with. This critical field of medicine has also become synonymous with a lack of timely access to services, delayed referrals by health-care professionals, and limited resources at local levels.

We are doing a disservice to our patients and their families – and I would argue that much of that disservice can be linked to the cloud of darkness, misunderstanding, and stigma that surrounds the name palliative care itself. Perhaps it is my naivety as a student, but I can’t help but feel that it’s time for a change. Palliative care is broken. The goal is to support people as they approach one of the most challenging times they will ever face – emotionally, intellectually, and financially. The goal is to support – so why not call it supportive care?

Some major centres have even played with this idea. The MD Anderson Cancer Center in Texas, a global leader in oncology and palliative care, surveyed physicians to ask if they thought a name change to supportive care could impact referrals. Overall, physicians preferred the name supportive care, and expressed they were more likely to refer patients to a service with that name.

These were not the only interesting results – physicians also found that the term “palliative” more frequently causes distress and hopelessness in patients and families. They then trialed the name change at their own palliative – whoops, supportive – care centre, and actually saw an increase in referrals over a nine-month period. The research and sample size are small, but what does exist suggests that a name change could have a real impact on perceptions, and more importantly, patient access to palliative care.

Our country is on a journey of realization around what it is to live a good life and to have control over one’s destiny. That conversation is happening in many different worlds, and medically assisted dying is one of them. What needs to happen next, as difficult and overwhelming as it may seem, is trying to tackle that shaky foundation. Until we do that, we are failing our patients at their most vulnerable – we are failing to give them a good death. I believe that timely and quality palliative care is a right, not a privilege; it ought to be the rule, and not the exception. So let’s support our patients.

Complete Article HERE!

We doctors see death all around us, but we don’t like to think about our own

By Daniel Marchalik

I bought Paul Kalanithi’s memoir, “When Breath Becomes Air,” the day it came out and set it down on my kitchen table unopened. Several of my best friends from medical school did likewise. We had read Kalanithi’s recent articles and knew the story of the Stanford neurosurgery chief resident diagnosed with metastatic lung cancer — a diagnosis that 22 months later would prove to be terminal.

But instead of jumping in, for several weeks we shared email exchanges about what we could expect to find, afraid to confront the actual words on the page. We were all at the end of our residency training (several of us, including me, in surgery), and reading the book, we knew, would make real a fear that no scientific articles and patient stories could: that terrible and unexpected things happen to doctors, too.

I had never really thought about the way physicians die, even though I was seeing so much death around me. But in hospitals, death can feel routine. We encounter it in intensive care units, on the floors and in the trauma bays; we see it happen to elderly patients with dementia, to newborns and to healthy teenagers. And yet I cannot think of any colleague who does not consistently draw a hard line of separation between what happens to “them” — the patients — and what can happen to “us.” There is an otherness to the bizarre accidents and the exceedingly rare cancers: In hospitals filled with unlikely catastrophes, the statistics are always on our side.

We trust in the double standard: one recommendation for our patients, a different one for ourselves. We routinely counsel patients on their end-of-life care, and we inquire about living wills before surgery. But in asking around, I learned that none of my fellow residents have living wills, designated proxies or advance directives. I don’t have them either, nor have I had a real discussion about what I would want done if the worst-case scenario occurred.

“None of my fellow residents have living wills, designated proxies or advance directives,” writes Daniel Marchalik.
“None of my fellow residents have living wills, designated proxies or advance directives,” writes Daniel Marchalik.

I did end up having a conversation with my best friend, an oncology fellow. “You would know what I would want,” I said to him rather nonchalantly, expecting this to be the end of the conversation. “Of course,” he said, “so do you. We’ve always been on the same page.” We easily agreed that neither of us would want prolonged breathing or feeding tubes, or holes made in our windpipe, or ending up stuck in a coma. Unless, of course, that coma was reversible.

“What percent chance of reversibility?” he asked. I didn’t have an answer — “I guess 5?” My best friend, it turned out, would draw the line at 2 percent, but not if there’s significant brain damage involved. How much brain damage is significant? As we considered our end-of-life preferences, it became clear that neither of us knew what the other would want because we had never actually thought through our own stances.

Physicians, like most people, do not want to discuss the implications of their own mortality. We forgo difficult conversations, assuming that our wishes would somehow be innately known by our friends and families. Haven’t we always been told that all doctors want the same thing? Indeed, a 2014 survey confirmed that an overwhelming majority of physicians — almost 90 percent — would choose no resuscitation. Most doctors also report wanting to die at home rather than in a hospital.

Perhaps it is these general assumptions that make physicians not feel the need to explicitly discuss and outline their end-of-life preferences. In a survey of almost 1,000 physicians whose mean age was 68, almost 90 percent thought that their family members were aware of their wishes for end-of-life care. Almost half of those surveyed did not think their doctor was aware of their end-of-life choices, with 59 percent of those participants having no intention of discussing these wishes with their doctor in the next year.

But we know that conversations about proxies and advance directives should happen long before they need to be utilized.

A 2016 study found that physicians were as likely to be hospitalized in the last six months of life as were non-physicians. On average, they also spent more days in intensive care units at the end of life and were as likely as others to die in a hospital.

So why are doctors dying in hospitals and in intensive care units instead of at home, when we know that their wishes tend to align with avoiding extreme measures at the end of life? My best guess is that physicians and non-physicians alike are skilled at believing that bad things happen only to others. Repeatedly witnessing tragedy does nothing to temper this human tendency.

At the same time, questions about the end of life are never easy even if we try to pretend that they are, and dealing in absolutes and generalities is seldom helpful. We see patients spending years on life support or clinging to hopeless cancer treatments and agree that we would never want that road for ourselves. Most of the time, however, the issues are markedly less clear. Often, the calculus shifts as life itself changes, as the needs of significant others and children become factored into the equation.

For that reason, living wills or designated proxies cannot exist in isolation. Instead, these questions must begin with a lot of self-reflection and difficult conversations with our loved ones. But none of that can happen until we come to terms with the unsettling reality of our own mortality. Not reflecting on or discussing it, like not picking up a book, does not change our reality: that illness and death are often unpredictable, and that this is as true for us doctors as it is for our patients.

Complete Article HERE!

Opting for a funeral at home: Challenging cultural norms



Originally from East Montpelier, Vermont, writer Lee Webster didn’t foresee leading a national organization that provides how-to guidance on caring for the dead, particularly from the comfort of one’s own home.

While Webster volunteered with hospice for years while writing for educational and conservation organizations, she never questioned standard American funeral practices until the day these interests converged.

What led Lee Webster to question commonly held assumptions about funeral rites? What exactly is a home funeral? And why are a growing number of Americans returning to the practice of caring for their own dead?

In courses I teach on pregnancy and infant loss, I highlight the practice of home funerals as potentially healing and positive rituals that bereaved parents can embrace. I often share this moving story of the home funeral of a 5-month-old baby named Burton and refer people to the work of theNational Home Funeral Alliance.

Since 2012, Webster has served on the board and most recently as president of the NHFA – an organization whose growth represents a paradigmatic shift in how Americans understand death/dying. In this interview, Webster reflects upon the significance of home funerals and articulates a vision of how we can care for the dead in a way that is “intentional, well-informed, responsible, and transformative.”

Let’s start with the basics. What is a home funeral?

Home funerals have to do with family-directed caring for, and honoring of, the deceased in the home after death occurs.

From the beginning of time, deaths were handled by close family members. Also, culturally designated after-death caregivers assisted the family in this work. Religious and community groups were often the first volunteer responders. Usually a birth midwife, or someone else known in the community as a healer, would offer support.

It wasn’t until the U.S. Civil War that the caring for the dead became outsourced and professionalized. This was primarily as a result of arterial embalming – which, incidentally, is the only thing professionals are licensed to do in caring for a body that no one else can legally do.

So, it’s legal for people to care for their own dead?

Absolutely, yes. Home funerals happen when next-of-kin exercise common law right to custody and control of the body. This is a fundamental American right that falls into the constitutional category of family rights, much like the right to care for children in the privacy of our own homes without governmental interference.

There are no legal obstacles to keeping or bringing a loved one home for a vigil period wherein the body may be bathed and dressed. One can have friends and family visit, or host a ceremony if desired, all at home. Also, home funerals don’t preclude standard or traditional observances that can be incorporated into the experience.

It’s important to note that there are unbroken traditions of home and community after-death care in religious communities. For example there are burial groups in the Quaker tradition and in the Jewish faith, the Tahara washing is central. Also, in some places in the U.S., professional funeral service is out of reach, so neighbors and fellow church or civic organization members volunteer to help with laying out the body and burial.

Why is interest in home funerals growing? 

There is no way to determine the statistical growth in home funerals – no office of statistics tracks this. But we do have observations that indicate a strong increase in awareness and favorability of home funerals.

“(Home funerals are) a fundamental American right … much like the right to care for children in the privacy of our own homes without governmental interference.” – Lee Webster, president of NHFA

We are seeing a steady increase in interest of people from every socio-economic and age level searching for more environmentally, culturally, financially, and spiritually satisfying after-death experiences. There is a simultaneous and systemic embracing of death and grief as normative processes in life, not as illnesses to overcome. These shifts are forming the underpinnings of the movement to bring after-death practices back into our own hands – and homes.

You mention the historical role of birth midwives in supporting families through death. Do you see parallels between the home-birth movement and the home-funeral movement?

On the surface, there are certainly similarities. For example, those drawn to home birth and home funerals often desire self-reliant, natural, and empowering life-threshold experiences.

However, I feel it is an inaccurate comparison for several reasons, chief among them the obvious difference in physical, moral, and legal care and responsibility for a newborn life and the life of its mother (compared to that of) a dead body. The education required to know where to place the dry ice on a dead body doesn’t compare with the education required to prevent death or catastrophe for a mother and child.

There is a fundamental legal problem with the analogy as well. Birth midwives were absorbed, for the most part willingly, into the medical model and remain a part of that model today. Home funerals and home-funeral guides are not aligned with the medical community. Once the body dies, it is no longer part of the medical wheel, except when organ or body donation occurs. Instead, home funerals are offering an organic alternative to a licensed funeral profession that has no medico-legal authority over families who choose to go it alone, minus a small minority of states that stipulate a funeral home official sign the death certificate.

How were you drawn to this work? 

My personal path to advocating for home funerals is based upon many years of service as a hospice volunteer, hospice spiritual care coordinator, and active conservationist. These interests converged while listening to a National Public Radio interview with Mark Harris focusing upon his book “Grave Matters: A Journey Through the Modern Funeral Industry to a Natural Way of Burial.” From there I learned about home funerals, non-invasive ways to care for bodies, and family-directed care.

For me, home funerals became a social justice issue that revolves around fundamental human rights and environmental imperatives, as well as a pragmatic way to solve financial and logistical problems.

Finally, I am a strong believer in the revelatory power of discomfort. I also believe that facing death on our own terms rather than outsourcing it creates opportunities for healthy grieving. Seeing the light go on when people realize there are positive alternatives to expensive, outgrown, and downright dysfunctional methods of caring for our dead and their bodies appeals to me.

Yes, offering meaningful options to people in times of grief is so important.

Choice matters. I have a deep Yankee quality of self-reliance and a disdain for being told what to do or think. I have come to the conclusion that the blind acceptance of our myths around funerals doesn’t serve us.

How do home funerals challenge what we’ve been told to think about the dead?

The first challenge relates to decades of misinformation and false mythology about the dangers of dead bodies. The fear that a dead body becomes instantaneously contagious is so ingrained in our culture that even our TV and movie programming perpetuates it in both subtle and blatant ways. Few know that the World Health Organization, for example, affirms “the widespread belief that corpses pose a major health risk is inaccurate.”

The other cultural assumption that home funerals challenge is the myth of the helpless mourner. Since the invention of the funeral industry, we have bought the storyline that we are necessarily and organically helpless in the face of grief. But it’s not true. Not everyone is devastated, paralyzed, or beyond coping. It doesn’t mean they don’t care. It means they have a plan for coping.

An emerging narrative that some home-funeral family members express is that they want to immerse themselves in the experience purposefully and experience the discomfort of grief as a catalyst for growth and purposeful action. They want to meet death head on. In fact, this is probably the primary reason for why people choose home funerals – to feel useful and connected.

Both cultural norms view us as victims, with the funeral profession as the only savior. While families are encouraged to partner with professionals for anything they wish, the move toward taking more personal responsibility represents a fundamental shift in our relationship not only to death itself but also to those we choose to partner with in meeting our needs.

Are there commercial interests that may be threatened with the growth of home funerals?  

Ostensibly, professional funeral business would appear to be threatened by home funerals, but I believe the opposite is true.

First, not all deaths are easy and tidy, and not all families are candidates for a complete do-it-yourself funeral. Even highly motivated families may find that the timing and logistics are just too much to manage on their own. So professionals can assist families in planning home funerals. After all, serving a bereaved family is the heart of death work whether you are paid for it or not. It’s not about any rigid requisite for the number of days one can keep a loved one at home, what kind of cooling technique is used, or how many hoops the family can jump through to get paperwork done within a mandatory time period. It’s about meeting the family’s expectations and desires for an intimate and authentic experience at home.

Home funerals present an opportunity to serve the family in a myriad of ways that can’t occur if the deceased is whisked away when the family chooses direct cremation or immediate burial to save money. Home funerals slow the pace, allow family to gather, give them time to think through what they want and act on it – all at little to no cost to the family or loss to the professional.

Add the possibility of including home-funeral guides to established practice and you have more growth potential, not less.

What are home-funeral guides?

Home-funeral guides are educators who consult, coach, demonstrate, and provide information that empowers families to care for their own if they are unaware of details of the practice.

Home-funeral guides don’t aspire to be pseudo-funeral directors. They don’t direct anything or anyone. Instead, they act as resources for people who are unfamiliar with the practical skills and possibilities for caring for their own dead at home. The ideal is for families to be prepared as a matter of course with the necessary information and the confidence to do it themselves, but home funeral is not a household word – yet.

What are the main misconceptions about your organization’s work?

The greatest misconceptions are that we are fringe people looking to shock or challenge people’s sensibilities and go up against the established funeral industry. Neither is the case. We are looking to unveil realistic options about a topic that has been mystified for decades to people regardless of their ability to pay or their religious or spiritual leanings. We hope that the industry listens to what the public is demanding by responding with real change from within.

What we mean by “funeral” is changing. No longer do we jump to the assumption that a funeral means a specific service in a religious building, organized by a hired professional. Through the lens of home funerals, we are beginning to envision the entire funeral period, from death to disposition, as a time filled with possibilities for caring for the physical, emotional, and spiritual needs of both the deceased and the bereaved.

Any final words of advice?

Well, there are no funeral police, so I encourage people to overcome the fear that they are doing something wrong when exercising their legal rights and responsibilities to care for their dead. Ultimately, it is a privilege to offer this last act of loving care.

How can people learn more about home funerals?

The NHFA website is chock-full of information, including directories of home-funeral guides, teachers and trainings, celebrants and more, plus articles, interviews, videos, how-to guides, and other written materials to get people started. We have an active Facebook page, a monthly newsletter and opportunities to connect with others at our biennial conference and monthly call-in programs. No one need go it alone – there’s plenty of support ready and waiting.

Complete Article HERE!

Comfort Care is ‘Good Medicine’ for Patients with Life-Limiting Conditions

By Kaylyn Christopher

Comfort Care

On Tuesday mornings on the third floor of the University of Virginia Medical Center, Ken White, professor and associate dean of strategic partnerships and innovation at UVA’s School of Nursing, meets with a team of health care professionals to receive patient reports.

Throughout the day, White will encounter patients with life-limiting conditions and will work with them and their families with one goal in mind: decreasing suffering by determining how best to improve their quality of life.

Such is the mission of White’s specialty, palliative care.

Dr. Tim Short, Dr. Joshua Barclay, and Ken White, a registered nurse and nurse practitioner, specialize in palliative care at the University of Virginia Medical Center.
Dr. Tim Short, Dr. Joshua Barclay, and Ken White, a registered nurse and nurse practitioner, specialize in palliative care at the University of Virginia Medical Center.

Working in this space is sacred work,” White said. “We are invited into the lives of people we don’t know, at a time when it’s difficult for everyone. We have to instill trust in people because this is their most vulnerable time.”

White’s shift into palliative care came while he was a health care administrator doing research on the economic benefit it could provide to his organization.

“My research showed that it improved quality of life and patient satisfaction,” White said. “It turns out there’s an economic benefit to palliative care, too, but that’s not why we do it. We do it because it’s good medicine.”

White, who is also a registered nurse, adult/gerontology acute care nurse practitioner and a certified palliative care nurse practitioner, said educating others on the benefits of palliative care can lead to drastically improving the quality of life for many patients and can also help patients’ families cope with the circumstances.

“We want to give all caregivers some base knowledge in palliative care,” he said. “This type of care is a real gift to society, our patients and their families. So investing in this is only going to make everyone give back more compassion.”

To advance those efforts, the School of Nursing, School of Medicine, Hospice of the Piedmont and Sentara Martha Jefferson Hospital are collaborating to make education available through the Third Annual Melton D. and Muriel Haney Interprofessional Conference, “Honoring Differences at the End of Life,” to be held Sept. 17.

In an interview with UVA Today, White emphasized some of the benefits of and challenges to palliative care.

Q. What exactly does palliative care entail?

A. We work with quality-of-life issues, so we try to get to the heart of what makes people tick and what they live for. Then, we work with the symptoms of their disease and sometimes the symptoms that result from their treatments. We also work with primary physicians and their teams to add a layer of support to families in decision-making.

Often, these topics are hard to discuss. In our society, we don’t really bring up death and dying, and in many cases, people aren’t prepared with advance directives, which are written legal documents that state a person’s wishes when he or she can’t speak for him- or herself.

Q. What are some common myths about palliative care?

A. There is a distinction between hospice and palliative care, and that often creates confusion. Palliative care is the science and philosophy of caring for people. Hospice, in the U.S., is a Medicare insurance benefit and goes into effect when two physicians sign saying the person has a terminal diagnosis and has six months or less to live. We do partner with hospices, though, with the goal of getting patients back to their homes or in their local communities.

Another thing is that not all palliative care is end-of-life. Palliative care can start when the diagnosis is made. End-of-life is just the final hours in the patient’s last days.

Q. How do you handle the sometimes difficult conversations that come with the territory of palliative care?

A. We start with identifying the goals of care by asking questions like, “What do you want this treatment to do for you?,” and when there’s a treatment that we know is not going to work, or it’s been tried and didn’t work, when there’s nothing else that we can try, we have to let them know. Ultimately, we want to help decrease suffering as much as possible.

Q. What are some other challenges to palliative care?

A. A lot of patients come from rural areas, and access to palliative care in rural areas is not very good. We’re trying to promote new and better ways to address this, and are talking about ideas like using telemedicine.

There is also some focus on honoring differences in cultural and spiritual diversity when it comes to palliative care.

Q. Have you noticed any societal shifts in recent years in terms of the approach to palliative care?

A. Nationwide, in the last 10 years, there has been a meteoric rise in the number of hospitals that have palliative care services. We also have more training programs. There is a specialty program here at UVA in the nurse practitioner program that focuses on palliative care, because there still is not enough supply to meet the demand for physicians and nurses with this kind of training.

Q. What do you think practicing clinicians as well as members of the community have to gain from education on the topic?

A. There is a big need to educate all caregivers about palliative care. There are two types of palliative care: primary and specialty. Specialty palliative care is located in places like UVA, but for the average, small hospital in America, caregivers can practice primary palliative care and can learn enough about it to integrate it into their practice without referring to specialists.

The more people know about this topic, the more likely they are to request palliative care or have their own advance directives filled out.

Complete Article HERE!

I wanted to help my dying friend. But that meant helping him die

When a friend asked me to accompany him to an organisation that provides assisted suicide, I trusted my feelings would catch up with my desire to help

By Steven Amsterdam

Steven Amsterdam
Steven Amsterdam, the author of The Easy Way Out and a palliative care nurse

I had nearly finished writing a novel about a dying assistant (not an assistant who is terminally ill; a person who hands over the necessary overdose of Nembutal) when I had a fateful conversation with an old friend.

Russ, who had long been sick, asked if I would go with him to Dignitas in Switzerland – a nonprofit organisation that provides assisted suicide – to help him die.

He said, “It’ll be good for your book.”

I’m a palliative care nurse, so I am all for a good, comfortable death. The nursing work is the reason I wrote the book – to imagine how such a character gets through their life and why. But Russ was not asking for creative writing. After three years of co

“Come on,” he said. “You should write about it. Plus, I’ll need a nurse for the endgame.”

I said “yes” because I trusted that my feelings would catch up with my desire to help my friend.

Almost 30 years ago Russ and I were briefly housemates in Brooklyn. He was a grad student in Icelandic mythology, stringing fellowships together and living mostly at the library, or in Reykjavik.

A few years later, when he was diagnosed with multiple sclerosis, he left the ancient world for better health insurance and became an academic editor. He battled on after that – with accessible keyboards, accommodating work hours and, finally, handrails and ramps – until he couldn’t manage anymore. “Retired” at age 40, his world scaled down to a few far-flung friendships and to his studio apartment in Queens.

Last year, a series of seizures – “wrecking balls”, Russ called them – abruptly took away function of just about everything but his left hand. Unable to transfer from bed to wheelchair, much less prepare food, he became reliant on public benefits and a shrinking bank account. To get by, he needed an ever-changing array of aides. Underpaid and undertrained, they thoughtlessly bullied, yakked and dropped him. To preserve a semblance of solitude, he limited their assistance to a few hours a day.

I live in Melbourne, so I was useful for middle-of-the-night calls. “That’s not nothing,” he said. When he was both dreading and needing the next aide, when he couldn’t reach the water on his end table, or when his mind was not being kind to him, we talked. A closer circle of friends or family or a better healthcare system could have helped but they weren’t an option. He was trapped in his bed, alone and crying.

“We always knew I wouldn’t do well when it got like this. I never expected it would be so soon.”

He told me last August he wanted to be dead before Christmas and that I would be the ideal escort. My patients have taught me how to discuss death without the usual terror, which lent me cred. Writing the novel had given me more than a casual understanding of all that would be involved. And after watching Terry Pratchett’s documentary about accompanying someone to Dignitas, I even knew my way around the Ikea-plain apartment where it would happen.

For me, the experience would be nursing education. It would be research for the book. And, as Russ pointed out, the flight to Zurich would be tax-deductible.

The application to Dignitas was his last writing assignment. For weeks, Russ fine-tuned his one-page statement on why he wanted to die. Another friend helped locate and notarise all of the required documents – confirming identity, prognosis and state of mind. She and I would accompany him, so that neither of us would have to fly back alone.

While Russ waited, he revised his will, gave his belongings away and, with heartbreaking care, explained to his 10-year-old niece why he wanted to die.

The letter finally came in December, outlining the final bits of protocol. For me, the letter was a doorway: I knew I would be ready to help him die. For Russ, it was something else: the planning stopped. He seemed to relax into his situation at home. He didn’t embrace it but, when he described an aide’s latest screw-up, I heard less rage and more acceptance of what was happening to his body. He stopped talking about dying as often or as urgently. There were fewer late-night calls. And, when we talked, it was about my edits and not his panics.

Dignitas were asking for too many documents, he said. Or Zurich would be too cold this time of year. Or this: “It’s too big a trip to make if I’m going to chicken out.”

It seemed as if what he had wanted was acknowledgement that he had been dealt a crap hand. With the official affirmation from Dignitas, he could go on playing it.

Then, last June, nearly a year after he first voiced the wish, the plan was on again. He would go in July. “I’m not cheerful about it but I don’t see another way.” The friend who’d helped with so much of the paperwork and another friend – one he’d had little contact with but who lived nearby – would go.

Not me.

“You live too far away,” was all he said, though the distance hadn’t been an issue before.

I imagine there’s a long word in Icelandic to describe the unique whiplash that comes from psyching oneself up to emotionally support a suicide and then suddenly being excluded from the project. Was it really logistics? I checked back over our conversations for some offence. Did I show too much writerly curiosity? Too much nursey pressure? Was he simply protecting me from the moment in the Dignitas apartment that neither of us could picture?

Russ made the trip and died two months ago. When I heard that he was resolved and relaxed in his last hours, I stopped speculating why I wasn’t there. It wasn’t about me.

The grief I’m left with has mostly been the completely ordinary and uncanny kind – life goes on without him. We lived apart for so long that my daily routine is untouched. It’s when I think about the conversations we’ll never get to have that I feel the loss. At times though, it gets more complicated. The anger is not at his quick death but at the long disease that led him to a place where he couldn’t see another way. Suicide – for lack of a better word – serves as a reminder that life is not only finite, it’s optional. What do we do about that? I don’t pretend to know.

More recently, a different feeling has washed up, requiring another long word in a strange language to articulate. It would cover every part of this past year with Russ: the wrecking balls, the plan, the new plan, his death and its aftermath. The word would mean three things at once and it would apply to both of us: a door tightly closed, a mercy granted and a bullet dodged.

So here, Russ: I wrote about it.

Complete Article HERE!

LGBT Seniors Are Being Pushed Back Into the Closet

By David R. Wheeler

To curb harassment in care facilities, one woman is teaching staff members to respect their elders’ sexual orientations.

** FILE** In this March 3, 2008 file photo, Phyllis Lyon, left, and Del Martin are photographed at home in San Francisco. On Monday, June 16, 2008, San Francisco Mayor Gavin Newsom will marry Martin and Lyon making them the first same sex couple to wed in San Francisco. (AP Photo/Marcio Jose Sanchez)
Phyllis Lyon, left, and Del Martin are photographed at home in San Francisco. They were the first same sex couple to wed in San Francisco.

A few years ago, Rabbi Sara Paasche-Orlow was spending time with, and comforting, a friend who was dying of cancer. Along with all of the usual difficulties and complexities of end-of-life care, there was an additional concern for the friend. Despite being married to her lesbian partner, she didn’t feel like she could be open about it with the hospice worker.

“When hospice came in, I couldn’t stay next to her in the bed,” the friend told Paasche-Orlow, “I had to separate myself. I had to pretend I was something I wasn’t.”

Although Paasche-Orlow never learned the exact reason for the discomfort, her friend’s reluctance to reveal her sexual identity is widespread among non-heterosexual senior citizens in long-term care. A recent national survey of this population by the National Resource Center on LGBT Aging—which provides support and services to lesbian, gay, bisexual, and transgender elders—found that the respondents were frequently mistreated by care-center staff, including cases of verbal and physical harassment, as well as refusal of basic services. Some respondents reported being prayed for and warned they might “go to hell” for their sexual orientation or gender identity.

In Paasche-Orlow’s case, her friend’s statement haunted her so much that she launched a series of programs to help long-term-care residents and staff members deal with the barriers to care for LGBT seniors—and the health disparities that may result. Her aim is to guard these seniors from being forced back into the closet as they age.

“I couldn’t go back and change it for my friend, but we could start thinking much more proactively about this,” Paasche-Orlow said.


With gay marriage legal nationwide and organizations such as The LGBT Aging Project, a nonprofit that advocates for equal access to life-prolonging services, in operation for more than a decade, Americans should theoretically be living in a golden age for LGBT seniors. Yet the LGBT Aging Center’s survey found that only 22 percent of respondents felt they could be open about their sexual identities with health-care staff. Almost 90 percent predicted that staff members would discriminate based on their sexual orientations or gender identities. And 43 percent reported instances of mistreatment. Meanwhile, few elder-care providers have services directly targeted at helping them.

To deal with this problem, Paasche-Orlow decided to integrate LGBT-focused programs into her work as the director of Religious and Chaplaincy Services at Hebrew SeniorLife, a Harvard-affiliated organization that provides health care to more than 3,000 Boston-area elders. Paasche-Orlow’s programs range from sensitivity training to bringing in LGBT youth from local high schools to spend time with residents.

Although the residents are grateful for the programs, community members such as Mimi Katz acknowledge there’s still a long way to go. Katz, who came out as a lesbian in 1968, lives in a Hebrew SeniorLife facility in Brookline, Massachusetts. She says that one of the major problems today’s elders must contend with is unspoken homophobia. “In the more liberal Brookline kind of setting, nobody is going to be overtly homophobic,” she said. “It’s the same thing as racism. Nobody wants to think of themselves as a racist, but then somebody will say, of one of the black aides, ‘Oh, she’s so well-spoken.’ That kind of thing. Or somebody will say to me, about a woman whose child is gay, ‘Oh, the heartache she goes through.’”

Katz can’t help but be exasperated when these moments occur. “It’s like, ‘Hello!’” she said.

In terms of concrete activities offered by Hebrew SeniorLife, Katz was especially appreciative of her community’s screening of the 2010 documentary Gen Silent, which follows the stories of six LGBT senior citizens who must navigate the intricacies of a long-term care system that is unsupportive of LGBT individuals. But Katz believes what will ultimately benefit LGBT elders the most is staff training. “The only way to deal with it is by example,” Katz said.

According to Paasche-Orlow, most care providers and staff members would never knowingly discriminate against someone because of their sexual identity. But that doesn’t mean LGBT seniors feel like they can be themselves. There’s a difference, Paasche-Orlow acknowledged, between wanting to provide a safe environment and actually providing one. “What we know about the whole field of cultural competency is that, unless I really understand the person I’m serving, I’m going to provide them with what I personally would like, or what I think they need.”

For example, a well-meaning staff member might accidentally make an LGBT elder uncomfortable by asking certain questions—about spouses, children, or grandchildren—that assume the resident is heterosexual. “Instead, we encourage people to ask, ‘Who are the important people in your life?’” Paasche-Orlow said.

Paasche-Orlow’s work does seem to be influencing the Hebrew SeniorLife staff. “The series of LGBT trainings that we went through opened my eyes to the experiences and needs of the transgender community,” said Marie Albert Parent Daniel, a nurse at Boston’s Hebrew Rehabilitation Center who now considers herself an LGBT advocate. “The trainings also gave me language and terminology to help support and educate staff members who may be struggling with how to best care for LGBT residents. … It hurts my heart to see that there are elderly people who are afraid to share their stories and live openly.”

Although an increasing number of long-term care facilities throughout the country are doing more to reach out to LGBT seniors, significant progress is needed before this becomes a widespread practice, said Tari Hanneman, director of the Health Equality Project at the HRC Foundation. “Unfortunately, because so many LGBTQ elders are not comfortable being out, aging service providers often do not realize that they are serving this population and do not recognize that they may need to change their policies and practices to become more LGBTQ-inclusive.”

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Companionship provided so no one dies alone

More hospice volunteers, hospitals and individuals are providing end-of-life support

By Gurveen Kaur

Volunteers (from left) Jeanette Wee, Francis Lim, Jaki Fisher, Tio Guat Kuan (sitting), Ng Seng Chuan, Angela Sho, Paul Koh and Ashleigh Quek provide a comforting presence to patients with no family or close friends in their final hours at Assisi Hospice.
Volunteers (from left) Jeanette Wee, Francis Lim, Jaki Fisher, Tio Guat Kuan (sitting), Ng Seng Chuan, Angela Sho, Paul Koh and Ashleigh Quek provide a comforting presence to patients with no family or close friends in their final hours at Assisi Hospice.

The ultimate present you could give a dying person may well be your presence.

At Assisi Hospice, 15 volunteers take turns to sit by the side of dying patients until their last breath.

They are part of No One Dies Alone, a volunteer-centred programme that provides companionship to dying patients who have neither family nor close friends to accompany them in their final hours.

The volunteers simply provide a comforting presence, lending emotional and psychological support without the help of medical equipment or medication.

At the hospice, it was a long-time volunteer, Ms Jaki Fisher, who suggested the programme in 2013 after hearing about it from a friend in the United States.

The English-language teacher, who is in her 30s, says: “It resonated as I have felt alone before and would not want these patients to feel this way before they die.”

No One Dies Alone was started in 2001 by Ms Sandra Clarke, a nurse in the US, and has been implemented in several hospitals there.

In 2014, she helped implement it at Assisi, whose former chief executive she knew, and also provided training materials. To be a volunteer with the programme, one has to clock at least three months at the hospice and have no recent bereavement in the family in the past six months.

To date, 19 residents have been admitted into the programme. After being identified by medical social workers as suitable candidates – having no family or loved ones – patients are invited to be part of the programme. If they accept, the volunteers will get to know and befriend them.

Once a patient is identified to be in the “active dying” phase, the volunteers each take three-hour shifts to sit by the patient’s bedside and just “be there with the patient”, says Ms Fisher, a Singapore permanent resident who has held vigil 11 times. The period can range from a few hours to a few days.

“It’s a powerful and intense period, even though you might just be sitting there. It’s not about doing something, but being present and there for the person,” she adds.

It can be a trying and emotionally charged process for the volunteers as they must accept that their role is not to help the patient get better.

Housewife Tio Guat Kuan, 51, says: “It was hard initially as we really wanted to help the patient… but then I learnt that the greatest gift you can give anyone is your presence.”

She has held vigil for 11 patients.

Assisi Hospice is the only place here with a fully established No One Dies Alone programme. Other establishments might have other formal programmes that are similar, or depend on staff to be with dying patients instead.

Some hospitals have taken an extra step when it comes to end-of-life care too.

At Khoo Teck Puat Hospital, nurses attend a two-day end-of-life workshop to equip themselves with the skills to counsel and accompany dying patients. These include how to communicate with patients and break bad news to a patient’s family.

Dr James Low, a senior consultant at the hospital’s department of geriatric medicine, says: “Sometimes, all that is needed is a person’s presence in those final hours so they do not feel abandoned. It can be just holding their hand.”

The hospital also has 11 single, air-conditioned rooms where dying patients, identified to be nearing the end, may spend their final hours with their loved ones at no added charge.

Similarly, Tan Tock Seng Hospital has six end-of-life rooms where families can say their last goodbyes in comfort and privacy.

Outside these medical institutions, there are death doulas, or individuals who provide practical and emotional support at the end of life.

It can be a dying person or his family or loved ones who request a doula’s services, which vary from helping to sort out legal paperwork to discussing existential topics on life and death.

In Western countries such as the US, Britain and Australia, the number of these end-of-life guides has been growing in the past five years, although there are no official figures on the industry.

In Singapore, there are few, if any, death doulas.

Certified midwife and birth consultant Red Miller, 38, has been organising workshops since last year to spread the word on the role of a death doula.

The Canadian, who is based in Singapore, invited her friend, Australian death doula Denise Love, to conduct two-day training sessions in November last year and March this year. The first attracted 13 attendees and the second, 26.

One participant was Ms Helen Clare Rozario, founder of Nirvana Mind, a company that offers meditation classes.

The workshop has inspired the 32-year-old to organise a “death cafe”, where people meet to discuss death, as well as a get-together for people who have lost loved ones to suicide.

She says: “The workshop made me think about my best friend’s death two years ago and how I can set up support groups for others who have lost loved ones to talk about the impact of the death.”

Complete Article HERE!