Month: October 2023

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Can Reimagined Hospice Combine Medical Care With Support In Dying?

By Howard Gleckman

After a half-century as a Medicare benefit, hospice care still has had only limited success in improving the quality of patients’ lives as they approach their deaths. While more people are enrolling in hospice (about 1.7 million in 2020), they often do so only days before dying. Thus, they fail to benefit from the best of what hospice has to offer.

As a result, there is increasing interest in new end-of-life care models. One would provide concurrent care that would combine some ongoing treatment for a patent’s underlying disease with end-of-life support. The idea: Encourage more—and quicker—hospice enrollment among those who often reject the benefit because they are “not ready to give up.”

Today, half of hospice patients are enrolled for 18 days or less and one-quarter receive the benefit for fewer than five days.

Medicare pays hospice providers a fixed amount for their obligation to offer full patient care to their enrollees. For example, this year it pays a daily rate of $211 for the first 60 days of routine care and $167-a-day after that.

Benefit Constraints

The hospice benefit comes with two significant constraints. The first: While Medicare pays for all hospice care, including treatment to manage pain and other symptoms, it does not pay for treatment, such as chemotherapy, aimed at curing the patient’s underlying disease.

The second requires a physician to certify that a patient is likely to die within six months of admission to hospice care. Both made sense in the 1980s. Those cancer patients typically enrolled in hospice after they exhausted all treatment aimed at curing their disease. And it was relatively easy for doctors to predict their life expectancy.

These two limitations may have controlled Medicare costs but they discouraged people from enrolling in hospice. Imagine having to sign a form acknowledging you are likely to die in six months or less.

An Alternative

But that may be changing. In one demonstration program, called the Medicare Care Choices Model, participants were more likely to enroll in hospice, receive better quality end-of-life care, and save Medicare money by stopping costly, but ultimately futile, treatment.

However, the program was limited to people with certain diseases, and many operators eventually dropped out.

A recent article in JAMA (paywall) by Natalie C. Ernecoff and Rebecca Anhang Price of the RAND Corporation describes how the new model could work for someone on dialysis to manage kidney failure.

Today, once a patient enrolls in traditional hospice, Medicare stops paying for dialysis. As a result, few kidney failure patients enroll. In a concurrent care model, Medicare would continue to pay for dialysis. But patients might begin to reduce the frequency and eventually stop as they receive more social and spiritual supports.

In some ways, these models look like palliative care that combines comfort care with standard treatment for serious illness. But it would be different in at least one crucial way: Because hospice could not be expected to pay for high-cost treatments, Medicare would have to fund a patient’s care through two payment streams. One for traditional medical care, the other for hospice’s social supports and its very different form of health care.

Challenges

The problem: How to combine a hospice’s nurse-social worker-chaplain model with often-complex medical treatment in the US’s fragmented, poorly coordinated health care system.

At the same time, finding ways to sufficiently pay for this complex care while preventing abuse by unscrupulous providers will be difficult. While many patients fail to benefit from hospice because they enroll too late, some hospice operators have gamed the system by enrolling patients who are not terminally ill. In effect, they collect Medicare’s daily payment without providing any care.

Finally, while large hospices may have the capacity to manage a complex alternative payment model with medical partners, small non-profits will struggle. Currently, of 5,000 hospices, about three-quarters are for-profits.

The World Has Changed

No doubt, something has to change. Until now, Medicare has been paying for hospice based on a model that was designed in the 1980s. Back in the day, the benefit was developed to provide end-of-life care for people with terminal cancer, who typically faced a month or two of serious functional decline before dying.

Major advancements in medical technology, changes in the health conditions of older adults, and a fundamental restructuring of the business of health care have created a very different end-of-life environment from a half century ago. In 2019, for example, about 20 percent of hospice patients had a principal diagnosis of dementia, compared with just 7.5 percent with cancer.

The other big change: Hospice was designed as part of traditional fee-for-service Medicare. But now, more than half of Medicare beneficiaries are enrolled in Medicare Advantage managed care plans that also receive a fixed monthly payment for each member they enroll.

Some observers worry about unintended consequences of a concurrent care model. For example, Brown University’s Joan Teno worries (see here) that a poorly designed concurrent care model could encourage some providers to stop treating patients who could benefit from curative care.

She’s right. The design will be critical. But today, the Medicare payment system is discouraging people who are dying from enrolling in hospice. That needs to change.

Complete Article ↪HERE↩!

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A dinner party for dead guests serves up surprising connections

— My friends came to a silent supper with their dead friends and relatives so that we could grieve our loved ones together

‘It’s only minutes into the evening when it becomes painfully, joyfully clear that everyone around the table needs this communion’: India Rakusen at her silent supper.

By

I don’t normally feel worried about having my friends over for dinner. Usually, I’ll be covered in splashes of soup and partially dressed when they arrive, but tonight I feel nervous.

Figuring out who to invite was complicated. Not only did they have to be available at short notice, but they had to be up for it, open to something different. Because this evening everyone has been asked to bring a plus-one … someone who has died.

As my living guests begin to arrive, bringing in the dark and subtle nip of the October air, I have the strong sense that they are not alone. I take their coats and ask them for the photo of their guest. Out of their pockets come snapshots. Smiling portraits, a moment of laughter on the stairs, a child on the beach, the ruffled ears of a French bulldog, a matriarch blurred by clouds of cigarette smoke.

In the other room, it’s quiet. The table is laid with candles, autumn leaves from the park and bright flowers, and there are twice as many plates laid at the table as there will be people in the room. I put each photo in its place. Because this is where we will serve food to the dead. We will eat, sometimes in silence, but we’ll talk and remember and, probably, cry. This is a silent supper. A feast for the dead.

It isn’t something I’d even have thought to do if I hadn’t been hanging out with witches for the series Witch for BBC Sounds and Radio 4. I’ve rarely felt comfortable or at ease talking about the dead or talking to someone who’s grieving, but for witches this seems to be different. Over the past year I’ve taken part in seances, been to an ancestor ritual and made an ancestor bottle for the spirit of a loved one. Most witches have regular rituals and altars for their ancestors and, of course, they have a dedicated season for remembrance. Witches believe that on 31 October, or Samhain, the “veil” is thin. It’s a skin between life and death that becomes more porous throughout October until, on this night, life and death can pour into each other – a lot like the world we see around us.

There are twice as many plates at the table as people in the room

This is the idea we play with at Halloween when ghouls and night terrors come knocking at our door. There’s a playfulness and joy at the idea of the afterlife being present, but in reality it’s so far out of reach. This year, I’ve decided to search for meaningful ways to remember the dead.

I decided that hosting a silent supper – historically known as a “dumb supper” – could be a good start. Eating in silence and feasting for the dead has been part of life for centuries. In England, there used to be a tradition called “chesting”.

Prof Diane Purkiss, author of English Food: A People’s History, explains: “This was even more of an Irish wake than an Irish wake. It involved having a feast that was laid out on the coffin of the deceased person. A massive blowout meal with huge treats and sugary goo. It’s honouring the dead, but it’s also quite visceral because you’re doing it on the coffin and it almost brings them physically into the feast.”

A silent supper is one step further. “What you’re describing is a ritual around the scariest and most taboo thing, which is the dead,” she says, “and this is because witches have a very special relationship with them. I define a witch as someone who doesn’t see the dead the way other people do.”

That’s certainly true. Last year my friend, colleague and witch Tatum Swithenbank reached the age at which a much loved and needed auntie had died. So their coven held a silent supper. “Sometimes we just want a space to talk about the people who have passed and there’s not really any great comfort you can give in words,” they told me. “What’s better than listening in a neutral space? That was the power of it. I don’t think you have to be a witch or be practising to do that.” They ate cheese, skull-shaped pizzas and a pumpkin pie.

Feeling underqualified to host my own silent supper, I ask for advice. “Making it dark, with only candles, really helps because people feel they are not as exposed,” says Tatum. “And it’s important to say something at the beginning. I acknowledged that grief is messy and complicated.” Another witch who loves a silent supper is Emma Griffin, who shares the ritual with her children. “It’s really nice for them to know their heritage,” she says. “We’ll have supper and talk about death, look through photos and also talk about death bringing changes. This year we are making food that my dad would like – meat and potato pie, mash and gravy.”

She advises me to make the space sacred and gentle. “I suggest giving people a dress code. When they come over your threshold, give them a little tealight. Remember, it’s a celebration of life. And you want to burn myrrh,” she says, gently but firmly as she talks me through my first ever online myrrh purchase. “It will smoke a lot, so don’t panic.”

The most pressing question of all is what on earth am I going to feed the dead? “Traditionally, the dead seem to want luxury foods,” says Purkiss. “They tend to eat dessert first, you know, life is short, eat dessert first. The dead always feel undervalued and in a way it makes them shirty so you are trying to get them to a position where they feel you value them.”

So, before the event, I threw myself (and my partner) into planning a six-course feast, my guests constantly in mind, especially the dead ones. What would they want? What would we give them if we had the chance again?

I bring Grandma Suzette. The family rarely talks about her

Purkiss approves. “Isn’t that what we all want?” she says. “When someone dies, virtually the first thing you feel is, ‘Oh, if only. If only I’d done this, or if only I’d found the time’. And the whole point of the ceremony is to give yourselves the healing chance to show great aunt Sarah you did really care.”

On the night itself, I choose to bring Grandma Suzette, who I have never met. She died when my dad was a baby. The family rarely talk about her. As my own son turned one, the loss of her for my dad and his siblings, and for me, started to ring loudly in my body. I am desperate to grieve for her.

And that’s what we’re here to do tonight. There’s a lot of normal party noise in the kitchen, but when we enter the dining room, absolutely brimming with myrrh smoke, everything softens. First, we light a candle and welcome our dead guests to the table. It feels a little strange, but maybe it should be normal. After all, eating for – and even with the dead – was once a living tradition, one that’s been purposefully rubbed away.

“There was this way of seeing the dead as beings that you interact with,” says Purkiss, adding that Catholic death rituals, such as kissing ornately decorated bones of saints, or praying in huge ossuaries stacked with bodies, went out during the Reformation. “Protestants threw all of that out, partly because they thought it had become a bit of a scam and it probably had in some cases. But the phrase throwing out the baby with the bathwater comes powerfully to mind.”

And she might be right, because it’s only minutes into the evening when it becomes painfully, joyfully clear that everyone around the table needs this communion with the dead. The phrase “I haven’t allowed myself to grieve” comes up time and again. One friend hasn’t allowed herself to grieve for her mum for 11 years. Another drifted from someone she adored and never felt she had permission to mourn them. A pal describes her love and grief for her dog Buddy as tied up with her longing for a baby. We also share joy and memories. My sister brings my other hilarious, powerful granny. A friend shares the story of a grandad who brought him pure and uncomplicated joy.<

The talking is a release, but so is acknowledging the empty places. “People did that a lot after the First World War,” Purkiss says. “They would lay places at Christmas dinner for people who had died. It makes sense.” There are three mini courses that we eat without speaking. We reflect or we write, and then we burn things we wished we could say to them.

As the courses continue to roll out, my guests talk about how much their plus-ones would have loved the feast, the wine. The chance to eat dessert again and again. We make them feel loved through food. Buddy the dog would have had a field day.

We eat too much, raise glasses of sweet mead to everyone, say the names of people out loud many, many times. We look each other straight in the eyes. No one shies away from death. By the end we all stink of myrrh, but it is as though something had shifted, for all of us. For me, I know how to talk about my grandma now, and I cannot wait to keep celebrating the people I miss in my life.

Complete Article ↪HERE↩!

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Supernatural Festivals

— A Cross-Cultural Look at the Celebration of Death

Candles placed on the river to carry intentions

By Dr. Ahriana Platten

Halloween, with its eerie costumes, spooky decorations, and a sense of playful fright, is a widely celebrated holiday in many parts of the world. It’s interesting to note that various faiths around the globe have their own festivals that share similarities with Halloween, a great example of the universal need to acknowledge our ancestors, the time of death, and our desire for life beyond our mortal walk. These celebrations may not always align perfectly with the modern commercialized version of Halloween, but they embrace themes of the supernatural, remembrance of the deceased, and the triumph of light over darkness.

Here are a few examples:

Dia de los Muertos – Mexico

In Mexico, Dia de los Muertos, or the Day of the Dead, is a vibrant and colorful festival that coincides with Halloween. Celebrated from October 31st to November 2nd, this holiday honors deceased loved ones. Families create elaborate altars adorned with sugar skulls, marigold flowers, and the favorite foods and beverages of the departed. People dress in skeleton costumes, and parades and festivals take place across the country to celebrate the cycle of life and death.

Pitru Paksha – Hinduism

In Hinduism, Pitru Paksha is a 16-day period when Hindus pay homage to their ancestors. It is believed that during this time, the spirits of the deceased visit the realm of the living. Families perform rituals, offer food, and conduct tarpana (libations) to honor their ancestors and seek blessings for their well-being in the afterlife. The festival is marked by a sense of solemnity and reflection, akin to Halloween’s connection with the supernatural.

Obon – Buddhism

Obon, or the Festival of the Dead, is a Buddhist tradition celebrated in Japan in July or August, depending on the region. During this time, families honor deceased relatives by lighting lanterns and setting them afloat on rivers and other bodies of water. It is believed that these lanterns guide the spirits of the deceased back to the world of the living. Bon Odori dances are also performed, and grave sites are cleaned and decorated to welcome back the spirits.

Samhain – Celtic Paganism

Samhain, originating from Celtic pagan traditions, is considered the precursor to modern Halloween. Celebrated on October 31st, it marks the end of the harvest season and the onset of winter. It is believed that during Samhain, the veil between the world of the living and the world of the dead is at its thinnest, allowing spirits to cross over. People would light bonfires, don masks, and leave offerings to appease the spirits. Many elements of Samhain have been incorporated into contemporary Halloween celebrations.

Chuseok – Korean Buddhism

Chuseok, also known as Korean Thanksgiving Day, is a major harvest festival celebrated in Korea. While it is not directly related to Halloween, it shares some thematic similarities. Families gather to pay respect to their ancestors by visiting their ancestral graves, offering food, and performing ancestral rites. Chuseok emphasizes the importance of family and the connection between the living and the deceased, similar to Halloween’s focus on remembering the departed.

Qingming Festival – Chinese Traditions

The Qingming Festival, also known as Tomb-Sweeping Day, is a Chinese tradition that occurs around April 4th or 5th. During this time, families visit the graves of their ancestors to clean the tombstones, make offerings, and burn incense. It is a day of remembrance and reflection, where people pay their respects to their ancestors and ensure their well-being in the afterlife. While not directly tied to Halloween, Qingming shares the theme of honoring the deceased and maintaining a connection with the spirit world.

Regardless of the specific rituals and customs, these traditions serve as a reminder of the enigmatic and unexplained aspects of life and death, making them captivating parallels to the Halloween festivities we know and cherish. the value of exploring the rites, rituals, and sacred ceremonies of faiths other than our own is that we begin to identify aspects of life that are universally important to all human beings — and, in the process, we come to a better understanding of our interconnection. This serves the pursuit of peace — something much of the world is actively seeking now.

Complete Article ↪HERE↩!

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Do end-of-life conversations make you nervous?

by Chris Brinneman, MSW, LCSW

If your family is like mine, you enjoy coming together to talk about living your best lives, planning vacations and making sure you are incorporating the activities and people you love into your calendar. But my family, perhaps unlike your family, also appreciates opportunities to discuss plans and preferences pertaining to potential health issues and scenarios, what we want our final days to look like, death and dying. We recognize that particularly given my profession, this might make us the exception to the norm. But it doesn’t have to be.

If you’ve seen the new Barbie movie, you can appreciate that I often feel like most people are the supporting characters in that film–dancing and having a great time–and I’m the one asking, “Do you guys ever think about dying?” It can certainly cause the record to scratch and the music to stop.

I’m incredibly grateful for my family’s willingness to engage in crucial conversations. After years serving and observing as a hospice and palliative care social worker, I boldly support not waiting until it’s too late to start talking about advance care planning (ACP) and end-of-life planning. I recommend inviting the people who matter most to us to have these discussions so that we know how to advocate for them in the event of a medical crisis and they know how to do so for us. Is it as light and lovely as vacation planning? Probably not. But it is one of the greatest gifts we can give to the people we care about.

Making ACP approachable

We live in a society where people predominantly avoid the subjects of aging and death. This can make it very challenging to broach the subject of end-of-life preferences. But I tell people to start by simply opening the door, metaphorically and physically, and inviting people in to chat. This could be on your own or with the help of an ACP advocate. The important thing is just to start, because these conversations evolve over time and are best when revisited as circumstances and expectations change.

My mom used to tease, with some underpinnings of truth, that her end-of-life plan was for us to “put her on an iceberg with a polar bear.” She grew up in a home where talking about death and dying was not the norm, as their faith did not accept the reality of death. As she got older, and three of her five adult children worked in healthcare, Mom became more willing to engage in ACP discussions sans the polar bear. A big motivator for this shift was that we, as a family, began to normalize talking about sickness, dying and death. We invited her to have conversations, and over time, she was able to clearly identify the person she wanted to make healthcare decisions for her if she could not make her own and state what her treatment preferences were for future care.

Setting the stage and starting the dialogue

You, too, should begin the conversation about advance care planning with your family and friends. If that makes you anxious or triggers you to feel overwhelmed, I want to offer some suggestions for broaching the subject from a different place.

Here are some ways you can start a crucial conversation in a format that feels good for you and your family:

  • Tee up the discussion in a neutral way. You don’t have to say, “Let’s have a difficult conversation and talk about your death.” These discussions should never be framed in a negative way. Rather, try beginning a dialogue with loved ones from the truth that completing ACP early allows you (and them) to think about and reflect on what is important when health changes, even though that may be years away.
  • Set the stage or take advantage of the situation. There are times when talking about death and dying fits seamlessly into a conversation or event. For example, if you learn of a sudden medical crisis with an acquaintance or friend, use the news to spark a discussion about what you would want in a similar situation. Similarly, there are settings and scenarios that support this type of intimate conversation. When walking and talking with a loved one, for instance, you can use the dedicated private time together to communicate about your wishes.
  • Dose these conversations out over time. You don’t have to tackle the entirety of your end-of-life wishes in one sitting or conversation. Talk a bit. If you start to feel overwhelmed or like you’ve made progress, leave it. Talk again when you’re ready.  
  • Emphasize key messages. ACP is good for all adults, regardless of age or health. We have a say in our care. Treatments only work if they work for us, each individually. We can change our minds. But it’s always imperative that you make the things that are most important to you known, so that the people who will be making decisions for you can be your voice. 
  • Lighten the emotional weight of the subject matter. If you struggle with the topic of end-of-life, as many do, there are games available to help guide the dialogue with a brighter approach. The Death Deck, Hello and Morbid Curiosity are great options. There are websites that offer resources like The Conversation Project Starter Kit.

I’ll leave you with this. Last year, I dropped my car off at the dealership to have some work done. The driver of the shuttle who took me to work asked what I did for a living, and I explained my work in advance care planning. By the time we concluded our short commute together, he had my card, and I had his promise that he would speak with his wife and call to schedule an appointment. He did. And you can, too.

Invite the people you love to have the dialogue–as many times as it takes. Be open to the gifts and relief these conversations can bring. Use the resources you need to ease any apprehension. And appreciate the opportunity to make your wishes known, because, unlike in Barbie’s world, we all think about death. We just need to normalize talking about it.

Complete Article ↪HERE↩!

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The Intersections Between Hospice and Palliative Care

By Holly Vossel

Hospice care and palliative care services have similar, but diverging, threads across the care continuum.

An area of increasing overlap centers around patient consultations discussing symptom management and goals of care.

Supportive care for patients and families is a common thread in both hospice and palliative care, with providers touching different points along a patients’ disease trajectory, according to Brynn Bowman, CEO of the Center to Advance Palliative Care (CAPC). The organization recently held a conference with the Coalition to Transform Advanced Care (C-TAC).

Palliative care and hospice share some common goals with hospice. Both aim to manage pain and symptoms for patients in critical health stages, she said. Ensuring that patients receive the right form of care at the right time is crucial Bowman indicated.

“Many leaders in the hospice and palliative care fields want the same thing for patients in that philosophical approach to care,” Bowman told Hospice News during the C-TAC-CAPC Leadership Summit in Washington, D.C. “The question is, how do we appropriately make sure that as soon as a person needs supportive palliative services, that they have the right access at the right time and the transition to hospice as it continues to evolve is appropriate.”

Hospices have increasingly built out palliative care as an additional business line, a trend that continues to accelerate.

More than half (56%) of hospice care professionals indicated that their organizations planned to launch palliative care programs during 2023 in this year’s Hospice News Industry Outlook Survey, prepared in collaboration with Homecare Homebase. This is up from last year’s results in which 52% of respondents reported the same. Survey respondents included nearly 330 hospice and palliative care industry professionals, including owners, executive leaders and managers, among others

Hospices seeking to reach patients further upstream could benefit from integrating a palliative consultative model into their works, according to Allison Silvers, chief health care transformation officer at CAPC.

“Hospice is a model with a definition of what gets delivered, how often and by whom,” Silvers told Hospice News at the summit. “One opportunity that could be better utilized is a consultative model, but it is a divergence for a consult. Hospice is a symptoms management model, but there’s also a delineating line there, particularly in the requirement to give up curative treatment. And that doesn’t fit a lot of patients and families’ beliefs. There’s opportunities to get rid of the ‘giving up’ component in palliative care where patients can be much better served.”

A headwind hospices often face in their growing palliative lines is a lack of awareness around the nature of these services among the general public and health professionals alike. Common issues are that medical and nursing students do not receive enough exposure to palliative care throughout their training, while patients, families and clinicians often conflate these services with hospice.

More research and education are needed to help fill these knowledge gaps and improve understanding of both hospice and palliative care and how they differ, said Dr. Andy Esch, palliative care specialist and CAPC’s senior education advisor.

Better understanding could foster improved care coordination between hospice and palliative care, helping providers to address unmet patient needs, he stated.

“Through education, awareness and research, we need to make it automatic for anybody interfacing with a patient to recognize suffering or an unmet need and figure out where to refer them and think about giving them palliative care,” Esch said at the summit. “The job is always making sure patients get the right services they need, and when someone is eligible for hospice, there’s a benefit in that program. And if they don’t qualify, they still deserve to have their symptoms managed, their care coordinated and their spiritual and psychological needs met. We need to make people more aware, and we need research to support the outcomes before it becomes more automatic.”

Complete Article ↪HERE↩!

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How Aid in Dying Became Medical, Not Moral

— The debate over aid in dying still rages in the language that medicine and the media use to describe the practice.

By Rachel E. Gross

In rural Iowa, Peg Sandeen recalls, living with AIDS meant living under the cloud of your neighbors’ judgment. After her husband, John, fell ill in 1992, the rumors began swirling. The couple had almost learned to live with the stigma when things took a turn for the worse.

In 1993, ravaged by his disease and running out of options, John wanted to make one final decision: to die on his own terms, with the help of life-ending medication. But at the time, there was no way to convey to his doctors what he wanted. As the debate over assisted dying raged in far-off Oregon, the headlines offered up only loaded words: murder, euthanasia, suicide.

John was adamant that what he wanted was not suicide. He loved his life: his wife, who had married him even though he had asked her to leave when he learned he was H.I.V. positive; their 2-year-old daughter, Hannah; and playing Neil Young songs on guitar, a pleasure that was rapidly being taken from him as his faculties slipped away.

“This was not a man who wanted to commit suicide, at all,” said Ms. Sandeen, now the chief executive of Death With Dignity, a group that supports aid-in-dying laws across the country. To her, the word only added more judgment to the homophobia and AIDS phobia that they — and others who found themselves in a similar position — were facing.

John had expressed to his wife his wish to die on his own terms. But, to her knowledge, he never spoke about it with his physicians. At the time, it felt impossible to bring it up as simply a medical question, not a moral one.

“Even if the answer was, ‘No, we can’t offer that,’ that would have made such a difference,” she said. “We were just facing so much stigma that even to have the ability to have this end-of-life care conversation would have just been remarkable.”

John succumbed to the virus on Dec. 9, 1993, less than a year before the Death With Dignity Act passed narrowly in Oregon. Since its enactment in 1997, more than 3,700 Oregonians have taken measures permitted by the law, which allows patients with a terminal illness and the approval of two doctors to receive life-ending medication. The practice is now legal in 10 U.S. states and Washington, D.C.

With this shift has come new language. Like the Sandeens, many health advocates and medical professionals insist that a terminally ill patient taking medication to hasten the end is doing something fundamentally different from suicide. The term “medical aid in dying,” they say, is meant to emphasize that someone with a terminal diagnosis is not choosing whether but how to die.

“There is a significant, a meaningful difference between someone seeking to end their life because they have a mental illness, and someone seeking to end their life who is going to die in the very near future anyway,” said Dr. Matthew Wynia, director of the University of Colorado’s Center for Bioethics and Humanities.

In the 1990s, advocates were facing an uphill battle for support. Two assisted-dying bills, in California and Washington, had failed, and the advocates now faced an opposition campaign that mischaracterized the practice as doctor-prescribed death. “At the time, the issue very badly needed to be rebranded and repositioned,” said Eli Stutsman, a lawyer and a main author of the Death With Dignity Act. “And that’s what we did.”

The text of the law, however, only defined the practice by what it was not: mercy killing, homicide, suicide or euthanasia. (In the United States, euthanasia means that a physician actively administers the life-ending substance. That practice has never been legal in the United States, although it is in Canada.)

New terms soon became inevitable. Barbara Coombs Lee, an author of the law and president at the time of the advocacy group Compassion and Choices, remembers a meeting in 2004 where her group discussed which terminology to use going forward. The impetus “was probably another frustrated conversation about another interminable interview with a reporter who insisted on calling it suicide,” she said.

A phrase like “medical aid in dying,” they concluded, would reassure patients that they were taking part in a process that was regulated and medically sanctioned. “Medicine has that legitimating power, like it or not,” says Anita Hannig, an anthropologist at Brandeis University and author of the book “The Day I Die: The Untold Story of Assisted Dying in America.” “That really removes a lot of the stigma.”

By contrast, words like “suicide” could have a devastating effect on patients and their families, as Dr. Hannig learned in her research. Grieving relatives might be left feeling shamed, isolated or unsupported by strangers or acquaintances who assumed that the loved one had “suicided.” Dying patients often hid their true wishes from their doctors, because they feared judgment or struggled to reconcile their personal views on suicide.

Unlike an older term, “physician aid in dying,” “medical aid in dying” also centered on the patient. “This is not a decision the physician’s making — this is not even a suggestion the physician is making,” said Ms. Coombs Lee, who has worked as an emergency-room nurse and a physician assistant. “The physician’s role is really secondary.”

An equally important consideration was how the phrase would be taken up by the medical community. Doctors in Oregon were already practicing aid in dying and publishing research on it. But without agreed-upon terms, they either defaulted to “assisted suicide” (generally used by opponents of the law) or “death with dignity” (the term chosen by advocates for the name of the law). A more neutral phrase, one that doctors could use with each other and in their research, was needed.

Not all organizations today agree that “medical aid in dying” is neutral. The Associated Press Stylebook still advises referring to “physician-assisted suicide,” noting that “aid in dying” is a term used by advocacy groups. The American Medical Association also uses this language: In 2019, a report from the association’s Council on Ethical and Judicial Affairs concluded that “despite its negative connotations, the term ‘physician assisted suicide’ describes the practice with the greatest precision. Most importantly, it clearly distinguishes the practice from euthanasia.”

Medical language has long shaped — and reshaped — how we understand death. Dr. Hannig noted that the concept of brain death did not exist until 1968. Until then, a patient whose brain activity had ceased but whose heart was still beating was still legally alive. One consequence was that any doctor removing the patient’s organs for transplant would have been committing a crime — a serious concern for a profession that is notoriously fearful of lawsuits.

In 1968, a Harvard Medical School committee came to the conclusion that “irreversible coma,” now known as brain death, should be considered a new criterion for death. This new definition — a legal one, rather than a biological one — has paved the way for organ transplantation around the world. “Before the definition of death was changed, those physicians would be called murderers,” Dr. Hannig said. “Now you have a totally new definition of death.”

Of course, doctors have always assisted patients who sought a better end. But in the past, it was usually in secret and under the shroud of euphemism.

“Back in the day, before the laws were passed, it was known as a wink and a nod,” said Dr. David Grube, a retired family physician in Oregon who began prescribing life-ending medications after one of his terminally ill patient violently took his own life. He knew doctors in the 1970s and ’80s who prescribed sleeping pills to terminally ill patients and let on that combining them with alcohol would lead to a peaceful death.

For a brief time after the Death With Dignity law was passed, some doctors used the word “hastening” to emphasize that the patient was already dying and that the physician was merely nudging along an unavoidable fate. That term did not catch on, in part because hospices did not like to advertise that they were shortening lives, and patients did not like hearing that hospice care might lead to their “hastening.”

In the absence of other language, the name of the law itself became the preferred term. The phrase allowed patients to open conversations with their physicians without feeling as though they were raising a taboo subject, and doctors understood immediately what was meant. The name has stuck: Even in his retirement, Dr. Grube gets calls from patients asking to talk about “death with dignity.”

Yet in some ways, Dr. Grube believes the use of the word “dignity” was unfortunate. To him, the crucial point is not the kind of death a patient chooses, but that the patient has a choice. “You can have a dignified death when you pull out all the stops and it doesn’t work,” he said. “If that’s what you want, it’s dignified. Dignity is defined by the patient.”

To him, that means avoiding language that heaps judgment on people who are already suffering. “There’s no place for shaming language in end-of-life,” Dr. Grube said. “It shouldn’t be there.”

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How Grief Manifests in the Body

— 10 Symptoms You May be Experiencing

By Iva Ursano

Grief is an inevitable part of life and an emotion that can be quite overwhelming to experience. It can be brought on by many things, from losing a loved one to being diagnosed with a serious medical condition or even a job loss. When someone is grieving, there are a lot of emotional and mental symptoms that are often discussed- things like sadness, depression, and anxiety.

However, what is not often talked about are the many physical symptoms that can manifest when someone is grieving. Some of these symptoms can be alarming, while others can be subtle. In this article, we’ll discuss ten physical symptoms you may be feeling and didn’t know was grief.

Fatigue

One of the most common physical symptoms of grief is fatigue. Grief can take an enormous toll on your body and mind and often leave you feeling mentally and physically drained. Though it may be difficult, it’s essential that those who are grieving make an effort to rest as much as possible.

Insomnia 

When someone is grieving, they may find it challenging to get quality sleep. While they may feel tired all the time, getting a full night’s sleep is something they will struggle with. Worry, anxiety, and stress may keep them up at night, leading to further exhaustion, which can make it difficult to maintain a healthy sleep schedule. If you’re struggling with insomnia, it may be helpful to try some relaxation techniques like meditation or yoga in the evening to help you relax your mind before bed. All-natural melatonin may also help you get to sleep.

Change in Appetite

It is common to experience appetite changes while grieving. Some individuals overeat, while others may find they have little to no appetite at all. If the latter is true, try to take a one-a-day multivitamin to ensure your body is getting some minerals. Try to eat a balanced diet, if you can. For those who tend to be emotional eaters, keeping your kitchen stocked with healthy food is ideal.

Physical Aches and Pains

Grief can cause unexplained aches and pains, including headaches, stomach pains, and muscle tension. These may come and go and can spread through the body. It’s important to make sure you take breaks throughout the day, drink water, and stretch to help alleviate these physical symptoms. Yoga can be effective in reducing muscle tension. You may also opt to book a relaxing massage.

Weakened Immune System

Studies have shown that prolonged grief can weaken the immune system, causing an increased risk of illnesses and infections. It’s important to eat well, exercise, and take care of yourself to avoid further illness during this time. Speak to your doctor or health care provider if you are coming down with infections and illnesses more often.

Digestive Issues

Grief can bring on stomach pain, nausea, and digestive issues. While these symptoms can be uncomfortable, they’re typically temporary and short-lived. However, if they persist, it may be helpful to seek advice from a medical professional. Drinking herbal tea and plenty of water throughout the day may help relieve some of these issues. Also, watch what you eat. If you are an emotional eater, try to reduce your junk food intake and increase your fruit, veggies, and healthy foods.

Breathing Difficulties

For some individuals, grieving may make breathing more challenging. This can manifest as shortness of breath or shallow breathing. It’s important to take steps to regulate your breathing through relaxation techniques like deep breathing, meditation, or gentle exercise.

High Blood Pressure

Prolonged grief can lead to hypertension, also known as high blood pressure. It’s essential to remain mindful of your diet and exercise, as well as thinking positive thoughts to reduce stress and your risk of developing high blood pressure. Practicing mindfulness may help ease your anxiety and grief, even just a little.

Chest Pain

Many people who are grieving often complain of having chest pain. This may be due to muscle tension, shortness of breath, or a feeling of ‘heaviness’ in the chest. If you experience chest pain, it’s important to seek medical attention immediately to rule out any other underlying causes.

Skin Irritations

Rash and hives are also physical symptoms of grief. Stress can cause skin irritations, so it is essential to take care of your skin health at this time. If you notice a rash forming, apply some natural antiseptic such as aloe vera gel or even a mixture of coconut oil and tea tree oil.

Conclusion

Grief is a natural process, but it can bring along with it several uncomfortable physical symptoms. While it’s important to try to manage your symptoms, it’s also essential to remember that everyone’s grieving process is different, and there is no ‘right’ way to grieve.

If you’re struggling with physical symptoms of grief, don’t hesitate to reach out, talk to someone, and seek medical aid if necessary. Remember that it takes time to heal and recover and that with patience and self-care, you can find inner peace and solace.

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