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How Gender-Affirming Care Bans Could Impact Hospice Access, Utilization

By Holly Vossel

Hospice providers are growing increasingly concerned about how state laws related to transgender rights may impede access to their services among LGBTQ+ communities.

A rash of states have recently passed legislation to ban the delivery of gender-affirming health care, including Idaho, Indiana, Mississippi and Tennessee, among others.

What’s happening in these states has caused mounting concern around access to quality hospice care for LGBTQ+ individuals, according to Kimberly Acquaviva, social worker and professor at the University of Virginia’s School of Nursing.

“It’s not difficult to imagine that transgender individuals living in those states may be hesitant to seek hospice care,” told Hospice News in an email. “If they receive hospice services in an inpatient facility like a hospice house, will they be addressed by their name and supported in their efforts to dress and groom themselves in a manner that affirms their gender 100% of the time? I’m not confident the answer to either question would be ‘yes.’”

Currently, 19 states in the United States have enacted bans or restrictions on the delivery of transgender health care, according to a recent report from The British Medical Journal (BMJ). Out of these states, 10 have already enacted such laws. Other states have similar laws that will take effect beginning July 1, in October or in January 2024, the BMJ report indicated.

Approximately 560 bills have been introduced thus far in 2023 across 49 states nationwide that include legislation related to transgender rights, according to the most recent data from the Trans Legislation Tracker. Around 83 of these laws have passed, 364 are actively in consideration and 113 were blocked, the data showed.

This compared to 26 bills out of 174 pieces of proposed legislation that passed the prior year, or roughly 15% of those proposed in 2022, the Trans Legislation Tracker reflected.

The volume of legislation that has been mulled or passed limiting transgender rights has been “disheartening” and makes it difficult for hospice providers to improve access and address quality, according to Dr. Noelle Marie Javier, internist at Mount Sinai Health System.

“There are roughly 29 states that do not have anti-discrimination protections in place for the LGBTQIA+ community,” Javier said during a recent American Academy of Hospice and Palliative Medicine webinar. “This number has grown tremendously and exponentially. At the end of the day, the LGBTQIA+ community simply wants to be accepted, supported, respected and treated humanely across the board. We are still dealing with the very same issues that our predecessors have long fought.”

The risks for transgender individuals in violation of current state laws has created health care access barriers for many in the LGBTQ+ community, according to Acquaviva.

“Hospice and palliative care professionals have an obligation to ensure transgender individuals have access to care and are treated with dignity and respect,” Acquaviva said. “If laws at the state level impede access and care delivery that aligns with those obligations, hospice and palliative care professionals need to speak up, speak out, and advocate for changes to the laws.”

Complete Article ↪HERE↩!

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How to talk to your children about death and dying

— Death will touch our children. They will have questions, some of which are unanswerable.

By the time children enter elementary school, they begin to understand that everyone — including their families and themselves — will die.

BY Hayley Juhl

It can be unnerving when your child works death into their imaginary play. It’s the thing we most want to shield them from, and their game feels dark and frightening.

Playing pretend is how children build order in their expanding worlds and gain control over situations that are far bigger than them. It is no different than adults turning a series of possibilities around in their minds — it’s just that youth offers the freedom to play each of the parts out loud. It is natural and good.Does it hurt to die? Where does the person go? Why did it happen to them? Are you going to die? I am going to die?

Every one of those questions must be addressed, even if you have to say, “I don’t know, but we can talk about it together.” Use clear, age-appropriate language and avoid phrases like “gone away” and “departed,” as younger children don’t understand forever and might struggle with reality that the person isn’t coming back. “They have left us” is wrapped in an extra layer of abandonment; “gone to sleep” will terrify them come bedtime.

Children under 2 do not comprehend death, though they have strong feelings of attachment and insecurity, according to Child Bereavement UK, which breaks down children’s understanding by age. Once they are teenagers, they are more likely to deal with death and grief by withdrawing and seeking the support of their peers.

Preschoolers might not react the way we expect them to when they are told someone has died, and might frequently ask when the person is coming back. This is the time they are most likely to talk and play about death and show interest in how it works. Keep answers short and clear and don’t offer more information than they ask for, as it can confuse them and heighten their anxiety.

By the time they are in elementary school, they begin to understand that everyone — including their families and themselves — will die.

“Children’s imagination and ‘magical thinking’ can mean that some children may believe that their thoughts or actions caused the death, and they can feel guilty,” Child Bereavement UK says. If their questions aren’t answered, they might fill in the gaps on their own. They must be made to feel comfortable asking questions, and we should take this opportunity to reassure them they could not have done anything to prevent the death.

Children who experienced the death of a loved one at a young age might need to reprocess their feelings as their understanding grows, Child Bereavement UK says. Conversations about death are not a one-and-done.

Don’t wait until the last moment. The Montreal Children’s Hospital advises thinking and talking about death before it touches our children’s lives.

“Many parents wait until a death occurs to work with their children on dealing with the idea of death,” the Children’s says, “But that can be especially difficult if the parents are dealing with grief themselves.”

Complete Article ↪HERE↩!

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It’s time to legalise assisted dying, in the name of compassion

— In my work as a congregational rabbi I see people die in pain, needlessly

‘Dignity in Dying’ supporters gather to call for a change in the law to support assisted dying outside the Houses of Parliament in central London on October 22, 2021

By Rabbi Dr Jonathan Romain

As someone who passionately values the gift of life that we each have, why have I now become head of the campaign in Britain to legalise assisted dying, whereby a person obtains a prescription for life-ending medicine that they themselves take?

It is precisely because of my work as a congregational rabbi and many years of visiting hospitals and hospices, where I see people die in pain, despite the best efforts of medical staff.

They often beg doctors and relatives “Can’t you help me die in peace?”, but at present that is not legal. I see no merit in individuals being forced to live out their last days in misery if they want to avoid it.

In Ecclesiastes we are told that ‘There is a time to be born and a time to die’ (3.2). It is noticeable that it does not stipulate who chooses that moment.

Suicide is rightly discouraged in Judaism, but that assumes the person may otherwise live on for many years if not decades. Assisted dying is for those dying who wish to die well.

If we control all aspects of our life – where we live, what job we have, who we marry – why should we not determine when we leave it if we are facing a terminal illness?

 A key factor for those wishing to die is the desire to avoid pain, but for others, it is the lack of control over their bodily functions or the unwelcome image of being sedated into a state of narcotic stupor.

Some might object that assisted dying means ‘playing God’ – but this ignores the fact that we frequently ‘play God’ – doing so every time we give a blood transfusion or provide a road accident victim with artificial limbs. Should we stop doing that?  No more hip replacements or heart transplants?

We can believe in the sanctity of life – how precious it is – but that does not mean believing in the sanctity of suffering, or disregarding steps to avoid it. There is nothing holy about agony.

If terminally-ill patients do not wish to live out their last few weeks in pain, for what purpose should they be forced to do so, and in whose interest is it that life is prolonged?

There are strict safeguards being proposed to prevent any abuse. They include the stipulation that the person is terminally ill, is mentally competent and makes the request of their own free will.

In addition, there is a rigorous process for ensuring the above: it can only be initiated if requested by the person him/herself, and they must be assessed by two independent doctors to ensure that they are terminally ill and of sound mind.

On top of this, the person must have been fully informed of palliative care, hospices and other options, while they can change their mind at any time, right up to the last minute.

Meanwhile, the British Medical Association and almost all other Medical Royal Colleges have dropped their previous opposition to assisted dying. That is very significant.

Another persuasive factor is that we are in the fortunate position of knowing in advance what will be the likely effects of permitting assisted dying. This is thanks to the experiences in Oregon, which has the closest system to the legislation being proposed here.

Since it was introduced in 1997, several thousand dying patients per year enquire about assistance to die, but only around 0.4% of the overall deaths in a year opt for it. That is twenty-five years of hard evidence.

It indicates that many people wish to ‘know it’s there’ and have the emotional safety net of knowing they can resort to it if their situation makes life intolerable, but never find they reach that stage.

While many in the religious hierarchy still hold to the traditional opposition to assisted dying, there are a growing number of rabbis who now favour it.

At the same time, attitudes are changing within the general population too. A recent Populus poll revealed that 79% of those from religious backgrounds – defined as people who take their faith seriously enough to attend services at least once a month – said they supported the law being changed. Amongst Jews it was 83%.

If there is a right to die as well as possible, it means having the option of assisted dying, whether or not it is taken up.

It is also a matter of compassion – the compassion not to force other people who are suffering to keep on suffering if they reckon it is time to let go.

We need to tackle it for their sake. But who knows if we ourselves might one day need it?

Complete Article ↪HERE↩!

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Hospice in Prison Part 2

— An interview with the Pastoral Care Workers

I don’t know ’bout religion
 I only know what I see
 And in the end when I hold their hand
 It’s both of us set free

These are the ending lyrics to Bonnie Raitt’s song “Down the Hall”, an ode to the Pastoral Care Workers who care for their fellow inmates in the hospice unit at the California Medical Facility in Vacaville, California. On last week’s podcast we interviewed the medical director and the chaplain of the prison’s hospice unit (Hospice in Prison Part 1). This week we turn our attention to the inmates.

Pastoral Care Workers are inmates who volunteer time to care for the dying who come from all around California to spend their last days, weeks or months in the prison’s hospice unit, fulfilling a mission that “no prisoner dies alone.”

On today’s podcast we talk with three of these Pastoral Care Workers, Jerry Judson, Jeffrey Maria, and Allan Krenitzky. We discuss with them why they decided to volunteer for the hospice unit, what a day in the life of a Pastoral Care Worker looks like, and among other things their thoughts on forgiveness, redemption, rehabilitation, and compassionate release.

We also had the pleasure to take a walk through the hospice unit garden with Mr. Gerald Hite. He taught us a little about the different flowers and plants, and along the way a little about why he does what he does.

While this is a podcast about volunteers in a prison hospice, I think it also serves as a lesson for us all about how we make meaning to our own lives and define ourselves by not only what we have done in the past, but what we do now. One story that Allen told perfectly sums this up. He said one day his son asked his wife what he does for a living, and his wife said “Papa helps sick people.”

Complete Article ↪HERE↩!

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Hospice in Prison Part 1

— An interview with Michele DiTomas and Keith Knauf

In the early 1990’s, California Medical Facility (CMF) created one of the nation’s first licensed hospice units inside a prison. This 17-bed unit serves inmates from all over the state who are approaching the end of their lives. A few are let out early on compassionate release. Many are there until they die.

Today’s podcast is part one of a two-part podcast where we spend a day at CMF, a medium security prison located about halfway between San Francisco and Sacramento, and the hospice unit housed inside its walls.

We start off part one by interviewing Michele DiTomas, who has been the longstanding Medical Director of the Hospice unit and currently is also the Chief Medical Executive for the Palliative care Initiative with the California Correctional Healthcare Services. We talk about the history of the hospice unit, including how it was initially set up to care for young men dying of AIDS, but now cares for a very different demographic – the rapidly aging prison population. We also talk about the eligibility for the unit, what makes it run including the interdisciplinary team and the inmate peer workers, and the topic of compassionate release.

Afterwards, we chat with the prison’s chaplain, Keith Knauf. Keith per many reports, is the heart and sole of the hospice unit and oversees the Pastoral Care Workers. These are inmates that volunteer to work in the hospice unit, serving a mission that “no prisoner dies alone.” We chat with Keith about how hospice in prison is different and similar to community hospice work, the selection process and role of the peer support workers, the role of forgiveness and spirituality in the care of dying inmates, and what makes this work both rewarding and hard.

Part two of the podcast, which comes next week, is solely focused on the Pastoral Care Workers. We interview three of them in the hospice unit and take a little tour of the hospice gardens.

Complete Article ↪HERE↩!

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Hospice and Medical Marijuana

— Helping At The End

By Amy Hansen

 

When the time of passing is close, emotions run high. When hospice if involved, it helps, but the pain of upcoming loss and all the unresolved issues are still left. In the US, people are taught to believe in happy endings. Generations have watched television shows and movies where in 30, 60 or 120 minutes all the issues are resolved and there is a last minute confession and a rebounding moment. Real life is neither as clean or as happy.

Does marijuana help in those final hours? In the moments with palliative or hospice care, anything that can help makes a difference.

Palliative care is medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness.

Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. Hospice is prescribed when a path to cure has come to an end and the focus changes to focus making the patient comfortable until the end. 

Two evidence-based guidelines address the use of medical marijuana in a palliative care setting. The first evidence-based guideline explicitly recommends against the use of medical cannabis as a first or second line option for palliative cancer pain. The guideline suggests that it could be considered in the case of refractory symptoms and with careful consideration of potential risks. The second evidence-based guideline similarly recommends that medical cannabis only be used in the palliative care setting when other treatments have failed, and after consideration of the potential for adverse events and drug interactions.

In study after study, medical marijuana can helps increase appetite, relieve painful constipation, and diminish pain. Hospice focuses on the focus well being, knowing there isn’t a long-term cure. Currently, most science shows medical marijuana manages systems but not resolve an serious ailment or injury.

shallow focus photography of bubble on leaves

Perhaps equally importantly, marijuana is used in the hospice care setting to ease spiritual and existential suffering. Some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, loss of functions, and a lifetime of reflections. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.

In 2019, a study was conducted among hospice professionals. About half of the respondents were nurses followed by administrators and physicians. Regardless of legal status, hospice staff members were overwhelmingly in agreement that medical marijuana is an important tool in supporting their patients.

Though medical marijuana is legal in 40 states, plus the District of Columbia, conflicting federal laws present a challenge for hospice and palliative care programs whose patients are interested in medical cannabis or already using it to manage pain and other symptoms.

The situation is particularly challenging for hospices, which are primarily funded by Medicare. Many hospices say they cannot legally prescribe medical marijuana because it remains a Schedule 1 controlled substance under federal law.

Complete Article ↪HERE↩!

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The Britons who made their final journey to Dignitas clinic

— Stories of people who travelled to the Swiss assisted-dying facility to end their lives

Craig Ewert allowed his 2006 death at the Dignitas clinic in Switzerland to be filmed. It was later shown as part of a TV documentary.

By

Since 2002, the clinic run by the assisted dying organisation Dignitas in Switzerland has been chosen by more than 500 Britons to end their lives. Here we look at some of those Britons who made their final journey to the facility.

First UK citizens to die at Dignitas

In 2002, a 77-year-old man with terminal throat cancer became the first Briton to take his own life at the assisted suicide clinic in Switzerland.

The former docker Reg Crew was the first named British person to have publicly travelled to die at Dignitas, in January 2003. The 74-year-old had had motor neurone disease for more than four years.

Craig Ewert

A former university professor with motor neurone disease, Ewert, allowed his death at the clinic in 2006 to be filmed and later shown in Britain in a documentary. The 59-year-old American father of two, who had moved to the UK after taking early retirement, travelled there from his home in Harrogate, North Yorkshire.

‘Mrs Z’

The woman publicly referred to as “Mrs Z” was at the heart of a landmark court case to determine whether she could travel to Dignitas with the help of her husband of 45 years. The 66-year-old had an incurable brain condition called cerebellar ataxia.

In 2004, she went to the high court over attempts to prevent her from dying at Dignitas. Her local authority brought the case after learning of her plans.

A judge decided not to frustrate her wishes to die abroad and lifted a ban on her husband, also 66, taking her abroad, in the first case of its kind.

Mrs Z died in Zurich on 1 December 2004.

Daniel James

At 23, James, who had played rugby for England as a teenager, became the youngest Briton to die at the clinic in September 2008 after being paralysed from the chest down in a rugby training accident.

West Mercia police initially investigated his death but three months later the director of public prosecutions announced that no action would be taken against his parents as it was not in the public interest, “although there was sufficient evidence for a realistic prosecution”.

His parents said James, a tetraplegic, felt his body had become a prison and he lived in fear and loathing of his daily life. His death led to widespread debate as he did not have a life-threatening condition.

Sir Edward and Joan Downes

In 2009, one of Britain’s most respected conductors, Sir Edward Downes, and his wife, Joan, ended their lives together at the clinic. Edward, 85, who was knighted in 1991, was almost blind and Joan, 74, was his full-time carer. He had a long and distinguished career with the BBC Philharmonic and the Royal Opera House, and conducted the inaugural performance at Sydney Opera House. The couple’s children, Caractacus and Boudicca, said their parents had “died peacefully, and under circumstances of their own choosing”.

Robert and Jennifer Stokes

In 2003, Robert and Jennifer Stokes, from Leighton Buzzard, Bedfordshire, died in Switzerland after contacting Dignitas. Robert, 59, had epilepsy and Jennifer, 53, had diabetes and back problems. Both had depression but neither was terminally ill. Family members demanded that the clinic be closed down.

Peter and Penelope Duff

Peter and Penelope Duff were the first terminally ill British couple to have an assisted death in 2009. Before Christmas 2008, they invited guests for a drinks party in an elegant Georgian townhouse overlooking the city of Bath. Their guests did not know that both hosts – he was 80, and she was 70 – were terminally ill with cancer and that they were, in effect, saying goodbye. In February 2009 they died at the clinic.

Complete Article ↪HERE↩!