— PeaceHealth makes cuts to palliative care

Karen Lerner sits at the kitchen table of her Bellingham home. She has been a PeaceHealth palliative care patient since her cancer diagnosis two and a half years ago. Lerner is switching to remote palliative care through Seattle’s Fred Hutchinson Cancer Center because PeaceHealth is reducing its program on May 26. “That was devastating to me,” she said.


PeaceHealth in Whatcom County is ending comprehensive outpatient palliative care on May 26, reducing staff to one nurse and one social worker for in-home care of seriously ill patients.

Criticism of the decision has been harsh, with some patients and observers saying it goes directly against PeaceHealth’s mission.

“This community, Whatcom County, has really been a leader in serious-illness and end-of-life care for the past decade, and I just feel like they cut us off at the knees,” said Marie Eaton, whose title is community champion at the Palliative Care Institute at Western Washington University.

Eaton and others, including retired PeaceHealth physician Meg Jacobson, who was board-certified in palliative medicine, said PeaceHealth broke a promise when it decided to cut palliative care after convincing donors to give more than $2 million to launch the program several years ago.

“PeaceHealth had assured us that we would keep it going,” Jacobson said. “And they just lied. I don’t know what they’re telling donors.”

In a May 16 statement to Cascadia Daily News, Bryan Stewart, system vice president for PeaceHealth’s Home and Community Division, said the health care provider couldn’t justify continuing the program, given the high cost of palliative care.

“On average, insurance reimbursement only covers 15–20 percent of the palliative care program costs,” Stewart said. “With rising costs across all service lines, it was simply not feasible to continue offering the comprehensive outpatient palliative program.”

Eaton said she understood PeaceHealth’s financial difficulties, but “the decimation of the outpatient palliative care program is particularly disturbing.”

“We raised millions of dollars with the promise that PeaceHealth would take it over in five years,” Eaton said. “I frankly feel betrayed.”

Stewart said the PeaceHealth St. Joseph Medical Center Foundation received a single, $1.25 million gift to launch the outpatient palliative care program, with an additional $1 million contributed by community members.

Stewart confirmed PeaceHealth had made a promise — with a caveat.

“The Foundation was clear with donors at the onset that PeaceHealth’s commitment was to support the palliative care program beyond the five-year Foundation investment, understanding that as the program evolved over time, operational changes might be necessary,” Stewart said. “Unfortunately, the stress caused by the pandemic on our health care system, coupled with under-reimbursement, high program expenses and relatively low number of patients served, led to the recently announced changes.”

In a recent review of its programs, PeaceHealth also decided to close its allergy clinic and overnight sleep lab.

A patient’s story

Karen Lerner was diagnosed with metastatic melanoma two and a half years ago, after doctors found a bleeding tumor in her brain. She learned about the cuts to palliative care on a recent phone call with her pharmacist.

“That was devastating to me and, I’m sure, to them,” Lerner said, referring to the palliative care workers who supported her. “It’s an amazing team of care providers and volunteers that can’t be replaced, as great as my personal care physician is.

Palliative care goes the extra mile for patients who are in extreme circumstances. PeaceHealth’s program cared for people diagnosed with cancer; chronic obstructive pulmonary disease, or COPD; congestive heart failure; and those who “graduated from hospice,” Eaton said.

Lerner was an unusual case. The side effects to her treatments included painful reactions that even made certain clothing unbearable.

“My doctor says that I’m an outlier, but my skin hurts all the time,” Lerner said. Her palliative care pharmacist, nurse and physician “have been really good about never giving up, in terms of trying to find the best medication regimen for me.”

“A normal pharmacist, [primary care physician] or oncologist, they don’t have the time or the ability to really look into things and help solve problems.”

Lerner said PeaceHealth staff couldn’t tell her where to turn for comprehensive palliative care after May 26. She considers herself fortunate, however. She lined up remote palliative care through Fred Hutchinson Cancer Center in Seattle, where she has been receiving her cancer treatments.

“There are so many people who are isolated and don’t have the resources that I do, that are just going to fall through the cracks with this, I’m sure,” she said.

After the cuts to palliative care, Eaton predicts that many of the patients currently in the program will begin to cycle in and out of the emergency room.

“One hundred people is too much for one nurse and one social worker to manage,” Eaton said. “To be able to stay in your home and have your symptoms managed by a social worker, nurse, physician and chaplain means your quality of life is so much better.”

Stewart put the number of in-home palliative care patients at 64. He also emphasized that cancer patients will get additional care. An oncology physician assistant, he said, will “focus exclusively on the palliative care needs of this vulnerable population.”

PeaceHealth’s mission

Eaton said that palliative care may not be a money-maker for a health care provider, but it can be a money-saver.

“It gets people into hospice sooner, where they can be covered by Medicare,” she said. “It reduces the number of [emergency department] visits.”

Jacobson also acknowledged that palliative care places a financial burden on health care systems, noting that they can’t bill for the services of a social worker or a chaplain.

“And doctors who do palliative care don’t see enough patients to make money for the institution,” Jacobson said. “So it was always going to be something that they were going to have to commit to, as a mission-driven service.”

PeaceHealth’s mission statement, posted online, says, “We carry on the healing mission of Jesus Christ by promoting personal and community health, relieving pain and suffering, and treating each person in a loving and caring way.”

Lerner, a cancer patient, took a dim view of the statement.

“The ironic thing, if you look at the PeaceHealth mission statement, it’s supposed to be for the care and relief of pain and suffering,” she said. “Instead, it’s more like, ‘for-profit, tax-exempt.’ That seems to be their mission.”

Complete Article HERE!

Making peace with life the secret to a good death, says veteran palliative care counsellor

Recently retired counsellor Barry Whelan spent 18 years in ministry before working in palliative care.

By Rachael Lucas

Over the past 25 years, Barry Whelan has made more than 20,000 visits to palliative care clients and their families.

The recently retired palliative care counsellor from Poowong, in Victoria’s south-east, has guided people of different faiths and backgrounds through the final stages of their life.

It’s given him insight into what happens when someone is at the end of their life.

“When someone is diagnosed with a terminal illness, they run through a milieu of emotions,” Mr Whelan says.

“Most people get to their 30s or 40s or 50s and think they’ve got 30 years left, then all of a sudden they’re told that they’ve got something that’s going to terminate their life.”

Elsie's Project
Resolution of an ongoing family dispute is an important part of the dying and grieving process.

He says common reactions to a terminal diagnosis include shock, denial, or anger followed by questions such as ‘Why me? Why now?’ and ‘What happens when I die?’

“I often get asked, ‘What’s it like to die?’ and my favourite line is ‘I don’t know, I’ve never done it, but I can teach you how to live before you die’.”

Palliative care primarily involves nursing in co-ordination with services such as occupational therapy, art and music therapy, counselling, and pastoral and spiritual care.

“When I first started back in 1997, it was probably a 95 to 98-per-cent death rate, but now with the advances in modern medicine, people survive a lot longer,” he says.

Despite significant advances in pain management with terminally ill patients, Mr Whelan said the mental anguish around death and dying remained a challenging personal journey for individuals.

A good death

Mr Whelan says initial visits with palliative clients were about determining a client’s goals, priorities and what they wanted to achieve in the time they have left.

“A good death to me is someone who is at peace with themselves, at peace with their family or surroundings and at peace with whatever they believe in,” he says.

As a counsellor, he has helped clients work through their stress, anxiety, guilt and past issues to reach a point of comfort.

“One of the first patients I had, the lady wanted to jump from a parachute. She survived the parachute jump but within a few weeks she had passed away,” he says.

“It was something that she wished to achieve”.

Barry stands between two professional women
Barry Whelan with Palliative Care South East (PCSE) chief executive Kelly Rogers (left) and co-founder Dr Ruth Redpath.

Mr Whelan says the most heartbreaking cases that he witnessed as a chaplain in aged care facilities was when terminal patients who had not had a visitor for months and even years were suddenly set upon by relatives.

“Where there’s a will there’s a relative,” he says.

Likewise, he says that family dispute resolutions were an important part of the dying and grieving process.

“I’ve seen people sit on one side of the chapel with other family on the other side [and] it was all over some trivial thing that happened 40 years before,” he says.

“It’s amazing what drives people apart, and how little it can be to bring them back together.”

The body follows the mind

Mr Whelan says he has observed that terminal patients can linger on for days or weeks if there is something unresolved that they wish to sort out.

“I think the body follows the mind in this, both in living and in dying,” he says.

“A lot of people, once they come to that peace they can accept the dying, but a lot of people hang on.”

He recalls the story of a woman who was sent home to die in October 2007, whom he later visited in February 2008.

He says she was determined to see out her 47th wedding anniversary, then she willed herself to live for her 70th birthday celebrations, and later her son’s wedding in May 2008.

“That lady went right through for the two and half years that I visited her, until finally we made the decision at work that she wasn’t really palliative anymore,” he says.

“She was still having chemotherapy, but she didn’t really need us.

“We all have aims and goals.”

She eventually passed on in 2015, living for seven years beyond her life expectancy.

Young Barry
Barry Whelan estimates he has counselled more than 2,500 terminally ill clients since starting in 1997.

Mr Whelan has witnessed countless occasions where clients have seen through a birthday or milestone celebration, waited until a relative had arrived from overseas, or met a new addition to the family before passing within days of an occasion.

“The other thing that I see is that sometimes people wait until their loved ones have left the room, and then they will simply just close their eyes and they’re gone,” he says.

Mr Whelan believes that self-will plays a key role in a person’s ability to hang on to life. In the same way that people without particular purpose, attachment, direction or will to live, can make a call on when they’ve ‘had enough’.

He says it is not unusual for widowers to pass on not long after losing a lifelong spouse and soul mate.

“If a person doesn’t feel wanted, doesn’t feel needed, I think they lose the will to live,” he says.

“I have seen people who have gone to hospital and not been visited by their loved ones, and they’ve died within a few days. So again, it’s this will to live.”

A man walking into the light at the end of a dark tunnel
Terminally ill patients have a tendency to determine when they’ve ‘had enough’.

In illustrating an example of a sustained will to live, Mr Whelan refers to the stories of concentration camp survivors and prisoners of war who manage to make the best of every day despite horrific circumstances.

“I guess my motive has been to survive as best you can for as long as you can with the best conditions you can manufacture from what you’ve got,” he says of his philosophy on life.

After 25 years witnessing people in their final stages of life, Mr Whelan says that he has learned to value everything he has.

“My advice to people is just, ‘enjoy what you’ve got, while you’ve got it, because you can’t go to a doctor and ask for a prescription for tomorrow’.”

Complete Article HERE!

Cutting hospice beds to help people die at home

By Claire McAllister

The number of people dying in their own homes has risen since the Covid pandemic and one Scottish health board has taken the controversial step of cutting hospice beds to provide more palliative care in the community.

Over the past three years, NHS Fife has adapted its service by closing more than half its hospice beds to try to reach more patients at home.

The move has caused local controversy, with many calling for hospice beds in Dunfermline to be reinstated, but specialist teams say they are now able to respond more quickly and flexibly to people in pain and distress.

Lisa Potter is one of those receiving end-of-life care after at her home in Dunfermline.

The 52-year-old was first diagnosed with cervical cancer in 2017 but had been all-clear for almost five years when hip pain was revealed to be cancer and it was incurable.

Lisa said the hardest part was for her family as they watched her get more ill.

“They’re all there and they feel helpless and don’t know what to do,” she said.

“There’s nothing they can do, they’ve just got to stand-by and hope for the best and hope that I’m comfortable.”

After a stay in hospital, her health deteriorated and Lisa wanted to be cared for at home where she has enjoyed the “little things” like family TV nights and her own bed.

She said “there’s not a lot of independence” with her illness but that she wanted to stay at home as long as she was comfortable then die in the hospice.

“I think it’s great I’ve got that choice,” she said.

“It makes it easier for me. I know I’m getting the choice to go to the hospice and my family are not watching me die upstairs.”

Deaths at home

Most people still die in hospital but the number of people dying at home has been increasing in recent years.

It reached a peak level in early 2020 at the height of the Covid pandemic but has remained high since then.

Figures for March 2023 show there were 1,782 deaths at home or in non-institutional settings, which was 17% above the five-year average.

The latest figures show that last week almost a third of deaths were at home (365).

As more people live longer with long-term conditions and advanced illnesses the demand has grown for end-of-life care a home.

In Fife, palliative teams work with GPs, district nurses, care home staff, hospital clinicians and charities to support people living with terminal conditions.

Dr Jo Bowden, a consultant in palliative medicine, described the greatest value of her specialist team as their ability to respond when people’s needs changed quickly – whether that was because of distress, physical symptoms or family circumstances.

She said work had been ongoing for years to change the service but at the start of the pandemic fewer people wanted to come into the hospice so they had too many nurses and doctors in that facility but not enough working in the community.

“Preferences often change with time but very clearly most people would choose to spend most of their time as their illness advances and towards the end of life at home,” she said.

“It’s not possible for every person but even for those people who need to come in either for a short spell or at the end of their lives the majority of their life lived will be at home.

“So that tells us that the majority of our resource needs to be there,” Dr Bowden said.

Inpatient care

Eleven beds in the hospice were closed to free-up staff and provide care that had only previously been available in the hospice setting. That has left eight hospice beds in the area.

Prior to the pandemic, the specialist team could look after a maximum of 19 patients but that has increased to 60 people under the changes.

Staff had previously only been able to work in particular settings but have changed to being able to work in any care setting on any day.

Demand for hospice care remains significantly lower than pre-pandemic in Fife. Since the changes, waits for a hospice bed have halved to one and a half days.

Before the pandemic 80% of the service budget was spent on inpatient care.

“We absolutely acknowledge that whenever bed closures are talked about, it causes anxiety,” Dr Bowden said.

“What we believe very firmly is that we’re delivering more for more people by using our resources more effectively.”

Jane Morris worked as a district nurse before moving to work with the specialist palliative care team. She can see a big difference for patients.

She said: “We struggled to get care to keep people at home before but now we’ve got it on tap.”

Proposals to permanently maintain these changes to the palliative care service in Fife are due to be considered at an Integration Joint Board meeting later this month.

However, more than 2,000 people have signed a petition launched by Claire Baker MSP calling for hospice beds in Dunfermline to be reinstated after closure of the ward at the start of the year. All inpatient hospice beds are now in the Victoria Hospital in Kirkcaldy.

The Fife Labour politician believes palliative care should be provided as locally as possible to support families and give people the choice so she wants to see the plans to make these changes permanent paused.

A new Scottish government palliative care strategy is due to be published later this year.

Complete Article HERE!

Why Taking Death Seriously Will Change Your Life

— Reena Lazar and Christa Overnell are working to shift our approaches to end-of-life planning.

Christa Ovenell, left, and Reena Lazar, right, take a selfie in front of people who gathered at one of their workshops at Mountain View Cemetery this year on how to plan for death.

By Josh Kozelj

On a balmy April evening, Renna Lazar leaned into the microphone, hushed the murmuring crowd and introduced herself. Then she addressed the topic that attracted roughly 60 people, young and old, to Vancouver’s only operating graveyard. Their death.

“We’re all going to die one day,” Lazar, who is co-founder of Willow End of Life Education & Planning told those assembled at Mountain View Cemetery, “Let’s start thinking about the reality of our mortality.”

In many western cultures, death is a taboo topic that people often avoid discussing — despite the fact that everyone dies. A 2019 survey in the U.K. found that six out of 10 people knew “little or nothing” about what happens at the end of someone’s life.

In Canada, the situation isn’t much better.

A 2016 Ipsos poll reported that just over half of the Canadians they surveyed understood palliative and end-of-life care.

But discussion about death, and how to plan for death, will be more important as Canada’s senior population is expected to skyrocket.

Data from the 2021 census showed that Canadians over 85 were one of the fastest growing age groups in the country. Buoyed by the baby boomer generation, the number of Canadians over the age of 85 will triple in the next 25 years.

That rate has led some to worry about how all of those elders will be cared for in their final stages of life, and whether their families and close ones will be prepared to have difficult conversations about death.

Lazar and co-host Christa Ovenell, founder of Death’s Apprentice, a personal planning and death consultation service, are hoping to shift the conversation around death in the Lower Mainland.

“Some of us might never buy a car, some of us might never get married or have children, but we will all die,” Ovenell said. “People spend more time checking out their cell phone plan than they do thinking about their end-of-life plan.”

The duo has launched a four-part workshop that will focus on a variety of topics — ranging from how to have an environmentally friendly burial to discussing the logistics of medically-assisted deaths — until November.

Following the first workshop, Lazar and Ovenell caught up with The Tyee to discuss why Canadians avoid talking about death. This interview has been edited for length and clarity.

The Tyee: What was the motivation to create this four-part workshop?

Reena Lazar: I’ve been touched by death, like so many people. I was in a scary car accident when I was 16 years old where the car flipped.

Fortunately, everyone was fine, but the first thing I did after the accident was take out a pen and paper and write letters to my three best friends at the time. I told them how much I loved them, what I appreciate about them, what I wished for them. I knew I was alive and well, but you come to appreciate life when you’re faced with death. There’s so much written about people in their dying days having these incredible transformations and having an awakening about what’s important to them.

So the whole premise of Willow is to help people “wake up before their time’s up.”

Christa Ovenell: I’m a Willow educator as well, but I’m also a woman in her late 40s who after being impacted by the work of Willow educational programming, decided to quit a high-paying and prestigious job and go into end-of-life care. I became a licensed funeral director and embalmer with the sole intention of messing with the status quo when it comes to death and end-of-life care. Because I believe we don’t really do death right in our society.

Why are we so reluctant to talk about death?

Lazar: I want to say it’s more of a western thing. It’s not a global problem, there are certain cultures that contemplate death all the time.

Ovenell: Industrialization has had a lot to do with why we in the West, in particular, have become so distanced from death as part of life. We just make the problem go away, call the funeral, take the dead person away.

In Victorian times, we would shield children from the messy realities of birth. But we would pull them in as little helpers when people were dying. As we cared for our dying, even our children would get a cool cloth and help. Whereas now, it’s kind of the opposite. Siblings will be there at a birth, but they are often not allowed to go to funerals.

I’m wondering how, if at all, has the pandemic shifted the conversation and the public’s approach to death?

Ovenell: I think it has been good in some regards, and in others, I have been told flat out it’s been too hard a time. We can’t engage in this conversation right now because everybody’s too distraught. I’ve also been told the exact opposite: “We need this more than ever now,” because people don’t know how to deal with [death].

Lazar: I agree. I don’t think we have the numbers or statistics to say whether this opened up our dialogue more or not, but it’s hard for us to know anecdotally.

It’s a nice segue to what’s going to happen, or what’s happening, with baby boomers. [The pandemic] has almost been like a dress rehearsal. Now we’re going to have people dying of all sorts of different causes, not just COVID-19…. We’re going to have way more deaths than we used to, and because they are boomers, they may want to die differently. For many that might be dying naturally, which means dying at home, being buried in a “green” cemetery, or something else.

You have both been in this space for years. In your professional practices, what gaps have you noticed in your discussions with health-care workers, or funeral directors, that you hope to change in your workshops?

Lazar: One thing that bugs me is that there’s been an effort among public institutions to get people to do their end-of-life planning, or their advanced care planning as it’s called. They have all these forms online you fill out. Where they fall short is they make the assumption that people already know what they want, what’s important and what their values are.

So a lot of people get this free material, they might go to a free presentation, and they get the form and they’re like, “I don’t know how to fill this out because I don’t know what to say.” So that’s where Willow comes in. We’re heart-centered and inquiry-based.

Ovenell: In our strained and taxed health-care system right now, there is so little time for meaningful discussion and understanding. We have all these things that are like “tick this box, which box do you fit into?”

Lazar: I thought you were going to get into this, Christa, but the funeral industry itself. Most funeral homes are owned by like two companies?

Ovenell: In Canada, we have two major companies [Service Corporation International and Arbor Memorial Inc.] that own virtually all of the funeral homes. It’s good for them if people don’t know what is happening until death occurs.

Why is that?

Ovenell: Because then they’re the experts. Then they can say, “here’s what I think you should do.” This is not my analogy, this came from a writer named David Lynch, but he said imagine going into a car dealership, walking in, taking out your wallet and saying, “I need a car.”

What should I get? How much will it cost? There is no other thing that we ever meet in our lives that we would go into with as little preparation as our actual death. That is one thing that we all do.

What do you hope people take away from these sessions?

Ovenell: Life changing shit.

Lazar: I don’t really have to hope because I’ve done enough [sessions in the past] to know what they take away.

They, first of all, are inspired and empowered to start doing some planning and having conversations. To me, the best gift they can do is to start talking about this stuff with people in their circles: their brothers, their sisters, their families, their communities.

Complete Article HERE!

Depression, fear and deterioration

— Why some Asian families avoid speaking about death

When Mishelle Tongco’s grandfather was given 30 days to live, her family decided not to tell him.

By Mishelle Tongco

My Filipino-Chinese grandfather taught me many things as I was growing up — from how to make spring rolls to the importance of family.

One of the most important lessons he passed on, was that no good ever comes from lying, no matter the circumstances.

“We must obey the word of the Lord,” he would tell us.

But for the last month of his life, my whole family and I withheld the truth from my grandpa.

In April last year, after more than two years on dialysis, he was given a month to live — and we decided not to tell him.

Lady sitting in front of a grave
Many Asian families believe that hiding information will protect their relatives from emotional harm.

Being born and raised in Australia, I did not understand what was happening — I thought this was something that only happened in my family.

But families withholding information about a life-threatening diagnosis is actually common practice in Asian cultures.

It is believed that speaking openly about death can do more harm than good, bringing bad luck, fear and emotional pain.

Yongxian Luo, a professor of Chinese studies at the University of Melbourne, said Asian families regularly chose to hide the truth about a terminal illness from their loved ones to protect them.

Professor Luo calls them “non-disclosure topics”.

“Certain topics, which are common for people to talk about in Anglo-American culture, are taboos or at least not preferred in discourse,” he said.

“For non-disclosure topics, the major difference is that Asian cultures do not want to talk about negative things.”

A headshot of Dr Nicola Atkin.
Dr Nicola Atkin says some cultures put more emphasis on familial responsibility and less on individual autonomy.

Dr Nicola Atkin, from the Peter MacCallum Cancer Centre in Melbourne, said that in her experience caring for patients and families from Asian cultures, they often put a greater emphasis on the patient as part of a family and community than on individualism.

“Some cultures have far less emphasis on the individual and individual autonomy but more on relational autonomy and a view of the patient in the context of their family, community and culture,” she said.

“This focus from family members on non-disclosure often goes hand in hand with a very strong sense of responsibility and duty to protect and care for their loved ones.”

Professor Luo said this emphasis on family shaped how people in Asian cultures engaged in most social and interpersonal relationships.

“Mutual trust is a top priority,” he said.

“In Hong Kong, a number of successful family businesses don’t hire outsiders because family members are more trustworthy.

“This is something Asian people would bear in mind when they think about social relationships.”

Sometimes these conflicts between Eastern and Western values can happen within families, particularly those in the diaspora.

A still from the film The Farewell showing a family standing and looking at the camera.
The Farewell is about a Chinese family who decides not to tell their grandmother that she is dying of cancer.

Based on her own experience dealing with her grandmother’s cancer diagnosis, US filmmaker Lulu Wang wrote and directed The Farewell, a 2019 drama/comedy that explores the cultural differences in approaches to death.

In the film, the mother of the central character, Billi Wang, relates a saying in China: “When people get cancer, they die. It’s not the cancer that kills them, it’s the fear.”

So when Chinese-born American Billi’s “nai nai” (grandmother) is given a few weeks to live, her family decides not to tell her.

The family struggles with this decision, especially Billi who believes her grandmother has the right to know.

“Isn’t that wrong to lie?” Billi asks her grandmother’s doctor.

“It’s a good lie,” he responds.

In Asia, doctors will generally comply with a family’s wishes when disclosing a diagnosis, using less specific and threatening terms such as “fever” or “sickness”.

Dr Atkin said both the family and patients usually shared the same attitudes when it came to this practice.

“Families have stated that they believe the patient will become depressed, lose all hope or deteriorate more quickly if they know the details of their disease or their prognosis,” Dr Atkin said.

“Usually the patient has been happy to delegate to family members or has wanted limited information and the family have been relatively accepting of this.”

A woman with her arm around a child near a grave.
Sarah Jones feared that her children would get depressed if they found out about her prognosis.

However, Dr Atkin said the practice of “non-disclosure” in Western countries could present conflicts between ethical principles which needed to be “weighed against each other”.

“Modern Western cultures tend to have a strong focus on the importance of the individual patient’s autonomy, and the individual making decisions about their own healthcare based on the full information provided by medical teams,” she said.

“Withholding information and making treatment decisions without the patient’s involvement can result in a form of paternalism, affect the patient-physician relationship and the patient’s trust in the doctor.”

Meanwhile, Elizabeth Utting, a senior associate in medical negligence at Law Partners, said as well as the ethical implications there were also legal ones in Australia.

“A medical negligence case could arise where withholding such a diagnosis meant that the patient could not receive medical treatment they required to improve their illness or prognosis,” she said.

“A medical negligence case could also arise if a patient’s prognosis was not communicated to the patient, and the patient suffered mental harm as a result of the delay in informing them of the prognosis.

“A doctor’s ethical and legal duty lays with their patient, not their family members.”

An act of love?

It’s not just children who withhold information from elderly parents.

For Filipino-Australian Sarah Jones it was the other way around.

She was 59 years old when she was diagnosed two years ago with terminal uterine cancer and given three months to live.

Her sister, Jessica Cruz, told the ABC Ms Jones decided to keep the prognosis a secret from her children.

“Only my brother-in-law and I knew,” said Ms Cruz, who asked to use pseudonyms for herself and her sister.

“She begged us not to tell her children about it. She continued to tell her kids that it was curable.”

Ms Jones worried about her children’s mental health and was afraid they would get depressed.

“She just wanted them to live a normal life,” Ms Cruz said.

When Ms Jones lost the ability to walk, Ms Cruz told her it was time to tell her children.

“I told her that they had the right to know and that they would understand — but really, I just wanted them to stay with their mum because time was running out,” she said.

Child holding a bouquet of flowers in front of grave
Sarah Jones died four days after turning 60 in hospital.

Her children found out about her condition from their father, and after seeing her son cry Ms Jones was upset.

But the next day she felt better about the situation.

“They were now prepared,” Ms Cruz said.

“There were no more secrets.”

Deputy director of palliative care at Melbourne’s St Vincent’s Hospital Jennifer Weil said there were many cultural, religious, and personal factors that went into decisions about how much information people wanted shared, especially in relation to terminal illness.

“The challenge for us as doctors is to seek to explore and understand, and avoid our own beliefs and values directing how we share information,” she said.

A women smiling at camera
Jennifer Weil says doctors need to make the effort to understand cultural beliefs.

Dr Atkin said if a patient, based on their cultural beliefs, decided not to have their diagnosis or prognosis disclosed to them, it did not necessarily go against the principle of autonomy.

“My approach is to understand the wishes, preferences and concerns of the family and the patient regarding medical information, explore these sensitively and reassure the family that their loved one will not be given information they don’t want to receive,” she said.

A good lie?

During the first few days after we got my grandpa’s prognosis, I did not want to lie to him — but I felt I had to respect my family’s decision.

Then, towards the end, I began to understand where my family was coming from.

We lied to him because we loved him. We wanted my grandpa to live his last remaining days in happiness instead of pain and grief.

And he did.

A close up of an older person's being held by another person.
Mishelle Tongco’s family spent their last moments with her grandpa in peace.

The last time I saw my grandpa was the day before he died at a hospital in Melbourne’s western suburbs.

Surrounding his bed was his wife, children and grandchildren. We all stood quietly.

“Thank you, my wonderful family,” he said as he looked up at the faces of his loved ones.

“I’d like to go home now.”

He closed his eyes.

“You will go home soon,” my sister told him.

“We will be at home waiting for you.”

Complete Article HERE!

Dealing with death and dying

— How to protect your psychological health

By Bianca Iovino

Aged care staff face a variety of challenges that come with their work and dealing with death, dying and grief is an unfortunate reality of the job.

When frequently dealing with the death of people you are caring for, particularly if you have a strong relationship with them, intense feelings of grief and loss often arise which can be harmful if not dealt with.

Grief is a common response to death. Everyone expresses grief differently and no one can tell another how they should grieve, but it is important to know where to turn to when you are in a state of bereavement and still need to work in the industry.

The Australian Psychological Society acknowledged that aged care workers should be trained to deal with the challenges of their job properly, particularly in areas where trauma or workplace injury may occur, such as the death of a client. But access to psychological services, particularly through your workplace, can be limited as the country faces a shortage of psychology professionals.

Just yesterday, The Medical Journal of Australia released findings that evidence‐based mental health and wellbeing programs are needed for workers in health and aged care organisations to alleviate the ongoing mental health and wellbeing effects of workplace shortages, considerable physical and psychological demands of the job as well as the COVID‐19 pandemic.

As it is in the nature of a carer to do just that – care for others – it is also important for you to care for yourself when you’re feeling weighed down from bereavement.

So what can be done to protect your psychological health?

Heightened exposure to grief in aged care

Exposure to repeated instances of death and grief has been linked to burnout and overwhelming stress in many aged care workers.

Aged care workers are battling staff shortages, increased responsibilities and are still feeling the impacts of the COVID-19 pandemic, increasing the likelihood of experiencing burnout even more.

Grief can also be complicated or prolonged which can be persistent, debilitating and lead to serious psychological distress.

Aged care staff can experience grief more intensely after a resident’s death if:

  • They were particularly close to the person who passed
  • They have limited confidence in caring for people at the end of life, or in talking about death
  • They are facing other stressors, such as heavy workload demands or conflicts and pressures at home
  • COVID-19 can also add to the grief experienced by aged care staff as they are under increased pressure to provide end of life care when family and volunteer visits are limited

Managing grief and bereavement at work

After experiencing death and loss, you may feel the need to start distancing yourself from clients in the name of self-preservation.

You’re not alone. Since the pandemic, many working in the health and aged care field have said they are experiencing compassion burnout – putting the care of vulnerable older Australians at risk. But this strategy probably won’t help you and learning ways to cope with grief can help you build the emotional resilience needed to be the best carer you can be. You can grieve and still care well.

As a first step, it is important for you to acknowledge your feelings of loss and grief. Think about how you are feeling, why you may be feeling it and identify if you think you need to take more steps to help you mitigate these, often intense, feelings.

If you have decided you need more help and support, you can lean on your workplace and fellow colleagues to talk out your feelings and experiences.

Aged care supervisors and staff can support each other by debriefing after a client dies and listening in a non-judgmental way. You may also decide to organise a memorial or attend the client’s funeral if you wish.

Staff should be given time and a private space to debrief after a resident’s death to honour the loss, sign condolence cards for the family and share information about the end of life caring experience. You can ask to know your organisation’s support policy by talking to your supervisor as this should be outlined in an Employee Assistance Program.

Managing grief and bereavement at home

When something happens at work, it’s not easy to simply leave it at the door.

Developing self-awareness is an important step in mitigating the feelings and experiences associated with bereavement and grief. By identifying your strengths and weaknesses as well as understanding why you react the way you do in certain situations, you can better manage your emotions rather than being overwhelmed by them.

If grief and bereavement are becoming unmanageable and starting to impact your home life, maintaining self-care practices is paramount to getting through.

Taking time to rest and relax is key to avoiding burnout and keeping stress levels under wraps.

Where possible, spend time with friends and family so that you have opportunities to talk about your feelings and experiences and also maintain your sense of community support and social connection.

As always recommended, maintaining a healthy diet and exercising in some capacity helps with feelings such as sadness and loss. But you may find you still need a bit more support to help you through.

Seek help by talking to a General Practitioner (GP), a counsellor, a psychologist or other source of professional support.

There are specific bereavement services to help you with grief and loss which may even be available to you through your employer, given the nature of the job.

Dealing with death and dying is no easy feat. We all experience grief loss in our lives but for aged care staff, this reality is constant.

Knowing what to do, where to turn and what supports are available to you when you lose a resident are important pieces of information that can help you grieve healthily while still caring.

Complete Article HERE!

The uphill battle for LGBTQ people after death

The Louisiana LGBTQ+ End of Life Guide. Though it was made with Louisiana’s laws in mind, creators of the guide are hoping to adapt and expand it to every state in the country.

By Katy Reckdahl and Christiana Botic

Three years ago, Robert Turner, a retired computer analyst in New Orleans, was diagnosed with Parkinson’s disease. So far, Turner, 63, only feels slightly stiff and a bit slower in his motion. “I tell my doctor I’m on the 20-year plan of surviving this,” he said.

Still, because Parkinson’s is progressive, his sister, a geriatric nurse, imagines the worst.

So Turner spent part of last week leafing through the 35-page Louisiana LGBTQ+ End of Life Guide, created in New Orleans about a year ago. It’s thought to be the first of its kind in the United States.

He’s been focused mainly on the guide’s first of four sections, called “When You’re Well,” which deals with Louisiana law and death planning, advance directives and wills. “I’m not ruling out a future husband, but there’s not one currently,” he said, as he outlined where his possessions will go and who can make funeral arrangements for him.

Robert Turner at home in New Orleans. He has Parkinson’s and is utilizing the Louisiana LGBTQ+ End of Life Guide.

Turner understands the stress of not having the proper legal framework in place when a loved one passes. “It’s just one of those things that we all put off and we all need to do,” Turner said. “My first husband died of AIDS in the early ’90s. We had scheduled a lawyer to come visit him in the hospital the next day, and he died that night.”

“Louis was really my first boyfriend, my first partner, my first husband, even though gay marriage was, of course, not legal in Louisiana then,” Turner said. “I didn’t have anything legal to show for his estate that he was my partner.”

A handmade magnolia wood urn holds the remains of Turner’s late husband, Louis Magee, who died at 38.
Turner looks at a photo of him and Louis.

The guide is the brainchild of Ezra Salter, 31, a funeral director in suburban New Orleans.

The onus to create this comprehensive guide came after Salter started dating their partner, Keira, a transgender woman. Salter, who identifies as nonbinary, was shocked at the disapproval that came from family. Salter feared what might happen if one of them died but couldn’t find a centralized, readily accessible resource to help them navigate the issue.

Neither of the pair have changed their names legally, and though relationships with family are improving, the tensions have remained. Salter’s parents haven’t met Keira during the 10 years they have been together. Some members of Keira’s family still refer to her by the name she was given at birth, known as a “deadname.”

Nonbinary funeral director Ezra Salter, who created the Louisiana LGBTQ+ End of Life Guide, at Metairie Cemetery.
Salter walks through Metairie Cemetery.
Salter holds Keira’s hand. The married couple have been together for 10 years.

In collaboration with several experts, Salter published the Louisiana LGBTQ+ End of Life Guide in 2022.

Salter said they frequently hear from guide users that “‘I never thought of this, I thought that power of attorney was enough,’ and not fully understanding the depth of what they need to protect themselves.”

“Getting documents in line prevents some heartaches,” Salter said of planning for death for unmarried couples in the LGBTQ+ community. “It’s difficult to see someone struggle with the idea that the husband who they used to sleep next to every night is sitting dead in a cooler because you can’t cremate them earlier unless you have this magic piece of paper.”

The family tension Salter speaks of is a common experience among members of the queer community. It makes the guide a necessity.

Salter and Keira, left, watch television at their home.

Nicholas Hite, of the Hite Law Group in New Orleans, founded his own law group in 2013 and focuses on LGBTQ+ representation. “Part of preparing, legally, for death is understanding that it’s most often not a lightning-bolt moment, where you’re alive one minute and dead the next, because of medical care and the nature of modern life.”

“For queer folks, your biological family — the people who are legally the next in line to make decisions — are oftentimes the last people that you want making your decisions,” he said. “So you need legal paperwork allowing your most closely held individuals — who aren’t necessarily married to you or related by blood — to be in the hospital and at the funeral home with you and on your behalf.”

Lawyer Nicholas Hite at his office in New Orleans.

Three years ago, because Ellen Stultz lacked such paperwork, she spent three months trying to claim the body of her close friend Oscar White, 62, who died without a partner or known family. “The situation was hard for me, still is really hard for me,” said Stultz, who has fond memories of French Quarter strolls and whiled-away afternoons at White’s apartment with his little family of adopted stray dogs.

After two months, she started to worry that White would be buried in an unmarked grave. She called the morgue every day, then connected with Salter through mutual friends. Within a week, she’d received a box in the mail containing White’s ashes.

Ellen Stultz saved the USPS box that conveyed the ashes of her friend Oscar White.

“His death was so traumatic,” Stultz said. “Yes, this is something that happened, but it seems like it doesn’t have to.”

Stultz did all she could within the system to claim White’s remains. Though no one else was requesting them, the state would not release the remains because she was not a blood relative. “When I first called the morgue, they were like, ‘Wait and see if any next of kin comes to claim his body.’ And at this point, he’d already been there a month. They didn’t really have much advice except just, ‘Keep calling,’” Stultz said. “Once I got Ezra involved, having someone to advocate for me, that’s all it took.”

Stultz holds White’s ashes.
Stultz holds photos of White and their group of friends in New Orleans.

For gender-diverse people, death arrangements have added complications, said Salter, who often hears the same questions again and again. “Who’s going to handle my body when I die, and how can I make sure that they use the right name and the right pronoun?”

“As I became trained in funeral service, I asked specific questions a lot, to every professional I met,” Salter said. “I’d raise a lot of hypothetical questions —“I’m asking for a friend.” I made it my business to get these answers because it was not clear anywhere online. I kept what I call a ‘chaotic Google Doc’ of everything I knew about funeral services.”

“I put my own life and, sort of, my own transition on hold to gain knowledge and work in a system, so that I can then go help people outside of the system who still need to interact with this institution and, you know, bridge the gap,” Salter said of working in the corporate funeral industry.

Salter holds a casket key they use at the funeral home where they work.
Makeup used to cosmeticize the dead.
The parlor room at Salter’s funeral home.

Hospital policies rarely deal with what gender (or nongender) should be assigned on death certificates, said Dietz, a contributor to the Louisiana guide who works as an advocate for transgender health care. (Dietz uses a mononym, without a surname.)

Most often, gender determination is made by the doctor signing the death certificate. But gender markers from medical records can be unreliable, since transgender people who still need prostate exams or Pap smears — considered “gender-specific care,” may retain their birth gender, even if they change gender on driver’s licenses, Dietz said.

“Oftentimes, life feels so overwhelming to LGBTQ+ people, depending on your layers of intersecting identities that are oppressed. So it can be really hard to prepare for death when we’re trying so hard to live,” Dietz said.

Because laws and institutional policies vary greatly between states, the creators of the Louisiana guide hope to create similar guides for every state, through a partnership with the national death-care advocacy group the Order of the Good Death.

Dietz, a contributor to the Louisiana LGBTQ+ End of Life Guide, at home in New Orleans.

In Louisiana, all powers of attorney expire at the time of death, said Liz Dunnebacke, who helped publish the guide through her New Orleans nonprofit, Wake, which provides death-care information and resources.

So even if someone has prearranged their own funeral, their next of kin can legally override those plans. “Your estranged mother can blow in 30 years later, order a full Catholic service with rites and exclude your chosen family from the ceremony,” Dunnebacke said.

That nightmare can be averted through the Funeral and Disposition of Remains Directive, a newly minted, two-page form. “The legal code existed, but no document. So we created one, which we now make available,” Dunnebacke said.

The directive, once notarized, identifies who will make decisions about physical remains and funeral ceremonies. It is an essential step, both legally and emotionally, Hite said.

“You know, many of us spend our entire lives fighting to get control and autonomy over our bodies,” he said. “The guide empowers folks to continue to maintain control over themselves, even after they’re dead.”

Complete Article HERE!