Tag: End of Life Care

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End Stage: Talking About End-of-Life With Those With Cancer

A nonprofit is partnering with performance artists to stimulate end-of-life discussions.

By MIRCHELLE LOUIS

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’
Cancer cells

No one likes to think about dying, so we don’t. We avoid the “elephant in the room” and talk around the topic. But what happens when, because of some life-threatening circumstance, you are forced to confront the idea of death? At Cancer Support Community North Texas (CSCNT), we see this happen far too often. Emotions run high, making conversations about death and end-of-life care daunting and overwhelming, sometimes even resulting in decisions that would not have been made if there had been some advance conversation and planning.

So what if we don’t avoid that “elephant?” What if we address it head-on, maybe even laugh about it? Maybe embrace the fact that death, like birth, is part of the natural order of things, and that we’re all going to die someday? In the hope of making the important conversation about death a little less overwhelming, and a whole lot less intimidating, CSCNT has partnered with The Final Acts Project, a community-based health education initiative that serves as a catalyst to stimulate end-of-life discussions, planning and legacy building through theater, creative arts and the humanities.

The Final Acts Project, the brainchild of Deborah Kaercher, Ph.D., an expert in public health and grassroots startups, was created to humanize the end-of-life experience. The initiative uses the performing arts and theater to ease the stress and anxiety of planning for our final days. By using laugh-out-loud, single-act performances and “bucket list” parties, Kaercher’s group encourages us to have the tough conversations we would otherwise avoid.

One performance that we just hosted in Dallas was “The Dead Giveaway,” a one-woman, audience-focused conversation that confronted the character’s impending death from cancer as she gave away her possessions to audience members. The interactive quality of this performance — which Kaercher’s group performs across the country — engaged the audience on a very personal level, encouraging empathy and self-reflection. More importantly, the talk-back following the performance addressed questions from the audience about end-of-life planning and advanced directives.

What particularly interests CSCNT about this unique way of broaching a tough subject is that it not only opens doors to better communication between spouses, families and close friends, but it can also lead to better care from medical professionals, social workers and loved ones. That is, by being better prepared, by being up front about our wishes and expectations, we can help direct the care we receive from others.

Rooted in personal experiences as well as evidence-based findings, the statistics on end-of-life care speak volumes: According to data from the Dartmouth Atlas of Health Care, more than one in four Medicare beneficiaries experiences an intensive care unit (ICU) stay during the last month of life. A quarter of Medicare deaths occur in the hospital, even though, in American public opinion surveys, most say they’d prefer to die at home if they were terminally ill. Medicare beneficiaries also would almost always choose to die without mechanical ventilation or medications that would make them feel worse all the time, and yet that describes the dying process for many in our nation’s critical care units.

The good news is that the times are changing. Medicare is now encouraging people to have a greater say in their desired end-of-life care. In fact, they’re now reimbursing doctors for time spent with patients having these conversations. And, organizations like ours and The Final Acts Project are collaborating to encourage people to take more control by doing advance planning that makes talking to doctors and families about end-of-life wishes easier…on everyone.

CSCNT and other cancer support organizations are already well-poised to have these conversations, with existing comprehensive systems of support in place. Now, the goal is to make it feel OK to “talk death” sooner and more comfortably with the people closest to us. So, let’s do this! Lights, camera, action…!

Complete Article HERE!

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“Dying with dignity” versus “doctor-assisted suicide:” ballot initiative sets off language battle

Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people

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dignity_human

In November Coloradans will decide whether to allow doctors to write life-ending prescriptions for terminally ill people who have less than six months to live and want to die on their own terms. Whether the initiative is called “doctor-assisted suicide,” “dying with dignity” or “medical aid in dying,” though, will depend on who is paying for the campaign ad.

The language behind the fight is becoming almost as impassioned as the years-long battle over “pro-choice” and “pro-life” that morphed into “abortion rights supporters” and “abortion rights opponents.”

People in favor of the initiative use the terms “dying with dignity” and “right to die” but named their Colorado ballot measure the more neutral “end-of-life options,” although the secretary of state’s office calls it the Medical Aid in Dying initiative. The campaign also uses “medical aid in dying,” which is what proponents predict doctors will call the procedure if it becomes legal in Colorado, as it is in five other states.

Opponents of the proposed law — including many for religious reasons and others who fear it would target people with disabilities — call it “physician-assisted suicide.”

The loaded words on both sides are a case study in the power of language, and how rhetoric — or the art of public persuasion — can shape political debate.

“To communicate and attach ourselves to language is a very natural thing for a human to do, to the point that people will come to blows over ‘physician-assisted suicide’ or ‘dying with dignity,’” said Dr. Christina Foust, chair of the communication studies department at the University of Denver.

“When I think of the word suicide, I think of the words that sound just like it — homicide, infanticide. It has such a negative connotation,” she said. On the other side, “dying with dignity” connotes the ability to choose one’s own death, which is an affront to somebody who “might rest that power in God or a higher power.”

Coloradans probably will get tired of both terms by the election, after they are bombarded with TV and radio ads. But Foust and Dr. Jeff Motter, who teaches political rhetoric at the University of Colorado at Boulder, find it fascinating.

A similar linguistics battle exists over greenhouse gases: Is it “global warming” or “climate change”? There is the intense division over the #blacklivesmatter versus #alllivesmatter, a matter of a single word. And for more proof that language is powerful, consider that the words “date rape” and “spousal rape” weren’t part of the lexicon until the 1970s or 1980s, and their mere existence effected change, Foust said.

Motter, who recently moved to Colorado from North Carolina, has picked up on the way the cannabis industry is “very careful to always use the term cannabis and not pot or marijuana.”

“They are trying to reinvent the story, and the story of cannabis is the story of medical, clothing, the fiber of it, and it’s not about the recreation of it,” he said.

In Colorado’s latest social debate, “death with dignity” and “doctor-assisted suicide” tell two “very different stories,” Motter said. “Is it a story of human compassion or a story of murder?”

“Medical aid in dying” is a more neutral term because it sounds clinical, like most of the vocabulary used in medicine, Faust said. Motter agreed but questioned whether the word “aid” is innocuous because it implies “it’s not just optional; aid is essential.”

Opponents of the measure say the campaign is attempting to “sanitize” the act, in which a doctor writes a prescription for secobarbital that is later self-administered.

“If I was on their side, I’d want to sanitize it too,” said John Stonestreet, who is with the Chuck Colson Center for Christian Worldview. “It’s a hard thing to swallow. But some things are hard to swallow because they should be hard to swallow.”

“Dying with dignity” is a “euphemism for killing elderly and terminally ill patients by giving them a cocktail of toxic drugs,” Stonestreet wrote on his blog. He told The Denver Post “medical aid in dying” doesn’t convey the reality of what’s at stake. The phrase makes it sound as if doctors are only making their patient comfortable as they die, not providing the prescription that ends their life, he said. “A doctor should never do anything to cause death or harm,” Stonestreet said.

But proponents of the measure said “suicide” is a pejorative, shame-inducing word that implies someone has a mental illness and is choosing to die. “People who use medical aid in dying are victims of a terminal illness,” said Barbara Coombs Lee, president of the national Compassion & Choices organization and a board member for the Colorado end-of-life options campaign.

She compared the “choice” that terminally ill patients have to the one made by people who jumped out of buildings on Sept. 11, 2001, to avoid burning to death.

The political movement initially used the term “dying with dignity” in the late 1980s and 1990s, and was successful in passing a law by the same name in Oregon. “We knew the term was biased in our favor — it was our term,” Coombs Lee said.

The term “medical aid in dying” arose because the medical community needed language to distinguish the new practice from the crime of aiding and abetting a suicide — coercing someone to jump from a building or persuading them to overdose. “Those are heinous crimes,” she said. “They should be clearly disassociated from a legitimate and authorized medical practice. Doctors stab people with knives, and we call it surgery. They inject people with poisonous toxins and we call it chemotherapy.”

The ballot measure says two physicians must agree that a person — who must be at least 18 years old — is terminally ill and has six months or less to live and is mentally competent. It also requires that the person self-administer the secobarbital, which historically has been used in low doses as a sleeping aid.

The divisive language has left news organizations considering what is the most objective term to describe the procedure. KUSA-Channel 9 recently informed viewers the station will call it “assisted suicide,” going by the Oxford definition of “the action of killing oneself intentionally.” Others, including The Denver Post, use “medical aid in dying,” noting that the word suicide carries meaning beyond the dictionary definition.

“Language does matter,” Motter said. “Both sides want their frame, and that’s because both sides are creating their story.”

Complete Article HERE!

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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.

By 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!

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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.

[Paul Kalanithi’s parting wisdom]

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!

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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!

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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.

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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.”

Complete Article HERE!

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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.”

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