Oregonians more likely to specify end-of-life wishes, study finds

A study from doctors a OHSU and the Dana-Farber Cancer Institute found that the number of people in Oregonian who fill out forms with end-of-life wishes has increased.

By Molly Harbarger

Each evening, Tina Castanares sits with her 97-year-old mother and reviews the next day. Castanares tells her mother who will wake her up in the morning and help her get ready for the day. Then her mother recites what she wants and doesn’t want paramedics to do in case she has a heart attack during the night.

Castanares knows that might sound morbid, but the ritual keeps her mother’s mind sharp and comforts her to know that her mother’s end-of-life wishes will be considered in an emergency.

That’s why her mother filled out a Physician Order for Life-Sustaining Treatment form, commonly called POLST. A recent study says that nearly half of all Oregonians who have died since the form was created had one filled out and the percentage of people doing so has only grown. The state leads the country how many people have a POLST form.

About 31 percent of people who died from 2010 to 2011 had a POLST on file with the state’s registry. A group of Oregon Health & Science University researchers, along with one from Harvard’s Dana-Farber Cancer Institute, found that number had jumped to 45 percent between 2015 and 2016.

In that same time frame, the number of deaths in Oregon by natural causes increased nearly 13 percent while the number of forms filled out by nearly 66 percent. Researchers say that indicates the popularity of the form has grown independent of the size of the population who would need it.

Oregon has led the country in palliative care in several ways. One of the most high-profile is Oregon’s Death with Dignity law, passed by voters in 1994 and enacted in 1997, years before other states started to adopt similar physician-assisted suicide laws.

But POLST is possibly the most impactful. The Center for Ethics in Health Care at Oregon Health & Science University put together a group of health care providers from the state to create the document, which allows anyone to say what kind of life-saving measures they want or don’t want in an emergency.

Every state now has some form of a POLST form. Oregon also has the most robust registry that any doctor or emergency worker can access in seconds.

Paramedics in Oregon are allowed to start CPR or other resuscitation techniques on a person in a medical crisis at their own discretion. But the chance of it working can be as low as 3 percent for people who are permanent residents of a nursing home. So many frail and older people fill out a POLST form that refuses those resuscitations measures.

Castanares’ mother is one of them. When an ambulance came twice, both times for non-life-threatening injuries, emergency crews were able to immediately look up her POLST form and see that she doesn’t want to be evaluated for anything beyond the injury. She has also made it clear she doesn’t want a breathing tube or other interventions other than those that would make her comfortable and able to be at home before she dies.

“She just really wants a natural death and really feels the POLST protects that,” Castanares said.

OHSU Center for Ethics in Health Care Director Dr. Susan Tolle said that many people who fill out a POLST form do it for the same reasons. However, the number of people who want extensive medical care in emergency situations has increased, according to the study.

About 13 percent of people who had a POLST form filled out when they died in 2015 to 2016 requested every life-saving measure, whereas only 8 percent did in 2010 to 2011.

And sometimes those desires change over time. Many people fill out more than one POLST over the course of their life, Tolle said, as their diagnosis changes or they experience new ailments.

“This is like any other medical order: if the wishes and the values and the context change, the orders need to change so that the plan of care is clearly guided as someone moves from one care setting to another,” Tolle said.

Tolle was also surprised to find that many people fill it out earlier in life.

The older an Oregonian is, the more likely they are to have a POLST form on file with the state. For people 95 and older, nearly 60 percent have a form — an increase of 83 percent over the last five years. But even people in their 60s and 70s have filled out the forms at a growing rate.

More than 31 percent more people between 65 and 74 had a POLST on file when they died than in 2010.

That could change how doctors talk to patients about POLST forms. Many people who are frail or have weak immune systems die suddenly from pneumonia or complications relating to disease. Tolle also said that people with memory or dementia conditions have started to fill out forms years before they expect to die.

Doctors tend to recommend POLST forms for people who are within months or a year of death. But Tolle said that might be excluding people who want to state their needs early and often.

“We didn’t really think carefully enough or fully understand the special needs of those at the most advanced age and frailty, and especially those with cognitive impairment,” Tolle said.

Complete Article HERE!

Gay Grief Is Different

On this 30th anniversary of World AIDS Day, Sue Rakowski explains how LGBTQ mourning is singular.

By Sue Rakowski

Grief, as you might have sadly discovered, is like a river that takes us where it wants us to go. We can’t stop those heartbreaking reality waves of anguish but we can learn to once again drift with purpose. Getting there is rough, because no matter how many well-meaning friends tell you “time heals all wounds,” there are just some losses we get “through” but we never get “over.” No grief is like your grief because no relationship was quite like yours.

Grieving the loss of a loved one is horrific enough, but it is even harder when you’re a member of the LGBTQ community. I know. I’ve felt this disenfranchised grief. Gay grief is marginalized. Many of us, depending on where we live and what kind of network we have, are excluded from experiencing society’s mourning process.

My girlfriend of 14.5 years died five years before same sex marriage was made legal. While I was the health care proxy and caregiver, I’m haunted that I was not able to file a wrongful death suit regarding medical malpractice because I was not an “immediate family” member. I was not invited to the funeral hosted by her family. And compared to many of my gay sisters and brothers, I got off easy.

There are thousands of members of our community who cannot even tell their employers that the love of their life has died for fear of losing their job, and much worse.

We’ve made significant inroads in the past decade. But despite legislation on same-sex marriage, a push for tougher anti-hate crime laws, and the World Health Organization’s declassification of transgender people as ‘mentally ill,’ the prejudice has not gone away.

The current administration has unleashed a culture of hate that is once again stacking the deck against us. They have erased LGBTQ terminology from various government forms. Beautiful families with same-sex parents are scrambling to lock down their rights in the event that rulings are overturned. Many are forced to conceal their true selves for fear of harassment. This dread and anxiety, especially among our trans family members, is making access to proper healthcare a terrifying experience.

Homosexuality is illegal in 73 countries. While not criminal in the U.S., there is a menacing climate present that ranges from wedding cake controversies to harassment and beatings.

If you lose your precious love, you might be denied a proper grieving process. This grief is forceful, commanding and unpredictable. We must grieve the loss of our loved one and the person we became with our love by our side.

If a long-term illness is the ultimate cause of death, will the medical staff be considerate and respectful of your relationship? How will you manage the discussions with the funeral home and cemetery arrangements? Will it be difficult to deal with your dear mate’s family? Are you afraid to tell your boss and co-workers about your relationship? These are questions straight people never have to ask.

Gay grief is often not taken as seriously as the bereavement process is for a hetero relationship. Co-workers, neighbors, and so forth, might not have any gay people in their circle of friends and don’t know what to say. They might not even try to console you. You might be completely ignored.

It’s important to stick close to like-minded people, your LGBTQ family, friends and straight allies. The good kids on the block. If your gay community is small or non-existent, reach out to online resources including the Human Rights Campaign, The Trevor Project and Parents & Friends of Lesbians & Gays (PFLAG) to make connections.

Look for a place to put your pain. Create a memory box with notes, cards, mementoes and souvenirs of your love. Write a letter and say all the things you wished you had time to say. Schedule a grieving session with yourself every day or week until the rushing river begins to subside a bit. Consider joining a grief group, but wait for the loss to really settle in — that could take four to six months.

Finding a gay grief group is, of course, the optimum situation. Talk about your grief with caring people. Reminisce. It helps.

A naming opportunity offers much solace. Find a charity building a walkway or other structure and buy a brick, for example, with your loved one’s name on it. Contribute to a program that places park benches in your town inscribed with your loved one’s name. If this is not an option, plant a flowering shrub or tree to honor your lost love. Watch it flourish and blossom every spring.

Plan holidays and special dates of observance in advance so you won’t be alone or succumb to last minute plans with callous people who don’t, won’t or can’t acknowledge your loss.

Join organizations, get involved. You might be able to help someone who is also grieving this traumatic death of a love.

Above all, be grateful for the time you spent with this cherished partner. Your life was better for having them in your world. It changed you, it shaped you. Take the golden moments with you. Grief is a war, but you are a survivor.

Complete Article HERE!

End-of-Life Conversations Can Bring You and Loved Ones Closer

If the opportunity presents itself, honor the person by listening

By Lisa Fields

Before his mother, Dee Dee, died from emphysema in 2009, Larry Sernovitz spent a lot of time at her bedside, keeping her company. Toward the last few days of Dee Dee’s life, she wasn’t very responsive, so her son didn’t expect to connect with her meaningfully anymore. During one of the final visits, Dee Dee had mostly rested, and the two hadn’t interacted much. So Larry was surprised to get a phone call from his mom the next day.

“She sang, ‘I just called to say I love you,’” says Sernovitz, a rabbi in Cherry Hill, N.J. “I don’t know if I fully realized the power of that moment. She bounced back. She was singing to me over the phone. Within the next day, she was gone.”

Dee Dee had sung to Sernovitz often while he was growing up, but her melodic phone call toward the end of her life was an unexpected surprise.

“I said, ‘Thank you so much. I love you, too,’” Sernovitz says. “I didn’t fully realize what was happening: She was beginning to say goodbye. She just wanted to let me know, even though I didn’t realize it at the time, that no matter where she goes, she’ll always love me.”

At the end of life, many people choose to tie up loose ends, to make sure nothing critically important is left unsaid to the people who matter to them most. They may feel it will help them die peacefully, knowing that no loved ones will have any doubts about their feelings.

“Those are opportunities for people to take stock and say, ‘I want to be more intentional about how I want to relate to people in my life,’” says Dr. Jessica Zitter, author of Extreme Measures: Finding a Better Path to the End of Life and an attending physician in critical-care and palliative care medicine at Highland Hospital in Oakland, Calif. “Death should really be seen as the last opportunity that you have to make amends and clean things up before you’re in the next world, wherever that might be.”

A New Dynamic

The end-of-life period can spark honest, soul-baring conversations that let people grow together emotionally while reminiscing, apologizing, forgiving, thanking or recognizing the efforts of their most cherished relatives and friends. Such talks can be especially meaningful if they’re initiated by someone who doesn’t usually talk about his or her feelings.

“These conversations are refreshing and calming to the souls of all who engage,” says Hattie Bryant, author of I’ll Have It My Way: Taking Control of End-of-Life Decisions. “If the dying person says words that the loved ones around are not used to hearing, it can open up a new and deeper path.”

Recognize the Moment

Sometimes palliative care physicians will help their patients with life-threatening conditions facilitate these conversations, steering them in directions that can bridge differences, highlight commonalities and allow people to grow closer. It’s ideal to have these conversations during the final weeks or months of life rather than waiting until the last possible moment.

“We always think we are going to have more time than we do,” says Zitter, who appeared in the Academy Award-nominated short documentary Extremis, about end-of-life decisions and conversations. “I see so many patients who get caught off-guard by those final days, to the point where something happens, they deteriorate; they can’t speak anymore; they aren’t alert. You don’t want to wait until those final days because it may be too late by then.”

The Start of an End-of-Life Discussion

When someone at the end of life opens up about his or her feelings, it can initiate an emotional conversation, with everyone sharing perspectives to gain a greater understanding of each other’s feelings. And if one person says “I love you,” the other person may return the sentiment, which brings greater depth to the relationship. The further the talks go, the greater the intimacy of the relationship may increase.

“I’ve seen it go any number of ways,” Zitter says. “A dialogue. One-sided. Over the phone — for people who aren’t going to have the chance to see each other again.”

Staying on Topic

Some terminally-ill patients want to have emotional conversations but can’t get the words out because their relatives cut them off.

“A lot of people say, ‘Every time I want to talk to my kids, they put their fingers in their ears and say, You’re not going to die’,” Zitter says. “When someone is coming to you with that feeling, you want to open up and listen and support, not deny the sentiments that are bringing them to you.”

It takes a certain amount of bravery to initiate these conversations. Not everyone is able to bare a soul this way — especially if someone is in denial about his or her diagnosis or prognosis. So honor your loved one by listening.

“The problem is: So many in America today don’t have these discussions, as they are too busy thinking they are going to be cured,” Bryant says. “Our goal should be not to die fighting a disease but to die loving people.”

Nearly 10 years after his mother’s death, Sernovitz is still awed by the meaningful conversation he had with his mom when she sang about her feelings.

“It was such a powerful moment,” Sernovitz says. “We have to really pay attention to what people say because we never know what messages they’re trying to send us.”

Complete Article HERE!

Herb & Hospice:

How Medical Marijuana Is Helping End-Of-Life Care

by Emily Berkey

While terminal patients are finding that medical cannabis offers relief with fewer side effects, health professionals must navigate legal challenges to offer aid.

While medical and recreational cannabis are currently legal in 33 U.S. states and the nation’s capital, it still remains illegal at the federal level, fostering fears of punishment for professionals within the medical establishment who may want to prescribe cannabis as a medication. Cannabis’ federal illegality not only deters discussions between doctors and patients seeking relief for various ailments, but it also greatly limits scientific research that could help assist medical experts seeking to determine cannabis’ efficacy as a treatment for certain disorders. Hospice patients and those receiving end-of-life care — a group who could arguably greatly benefit from medicinal cannabis use — are often times uninformed about the plant’s therapeutic properties, because their doctors, nurses, and other medical staffers are often hesitant to speak with patients about the advantages and risks of consuming cannabis.

“As an administrator, I can tell you it’s not that we’re not allowed to talk about the use of cannabis, but there’s a fear that the federal funding [Medicare and Social Security] could be pulled, so we just don’t know what we can and can’t talk about. But as a nurse, I feel it’s our duty to advocate for any healing measure for the patient,” says Lance Pool, the main Registered Nurse at Stoneybrook Assisted Living in Corvallis, Oregon. “I’d fear losing my job if I spoke about it… many places I’ve worked would terminate you on the spot if you spoke about cannabis use.”

Lance and Cydney Pool of Treewise Holistic Nursing Services

Armed with a desire to create change in their fields, Lance and his wife Cydney, who is a death doula (someone who assists individuals and their families in the dying process by offering physical, mental, and emotional support, similar to a birth doula), created Treewise Holistic Nursing Services, a company designed to meet the needs of elderly patients and those seeking end-of-life care with the help of cannabis as medicine. “Some of my friends who are administrators in nursing homes and assisted living [facilities] said what they really needed was an outside consultant who they could refer people who have questions about cannabis to… so that’s how Treewise got started,” says Pool. “There are a lot of elderly folks who have questions, and we’re there to answer them as an outside source.”

Treewise offers private consultation to senior citizens who are curious about or need help using cannabis for various ailments. “State regulation requires that the facilities provide for the ‘holistic’ needs of their residents… There are several ways that facilities can [do that with cannabis medications]: they can assign a “caregiver” to visit the dispensary for their residents, [or] the dispensary can “deliver” to the facility. We are licensed as a patient and [a] grower, so we can provide any of these services,” explains Pool. Although they do not sell cannabis to patients, they assist in administering it, advising, and coordinating care and communication between patients and their caregivers. “We are new to Oregon, so we are building a client base and growing our own medicine,” says Pool. “It is nice to be in a legal state where our professional licenses are relatively safe. Federal prohibition has never held us back — we are doing exactly what we want to do and always have, but federal prohibition is holding our elders back from the ‘holistic’ benefits of nature’s medicine.”

Jennifer Rosenthal Iverson, an attorney specializing in medical marijuana in Monterey, California, explains why assisted living facilities may be apprehensive to get on board with medical marijuana despite it being legal at the state level since 1996: “In California, any entity receiving federal funding is concerned because [cannabis] it’s still a Schedule I narcotic. The fear or notion that the federal government will come after an assisted living place is very far off, but if someone is receiving federal subsidies, it would be a concern.” Many hospice companies run into the same dilemmas as nursing facilities — patients who are anxious, in pain, and lacking an appetite who could potentially benefit from cannabis as medicine — and an inability to speak about cannabis for fear of reprimand or loss of federal Medicare and Social Security funding. 

T Ngu, a hospice volunteer

T Ngu, the owner of Project Object in Portland, Oregon, has been volunteering for a hospice organization for five years. “One of the families was very involved in the medication process. They really wanted to know what the medication was doing, how it was affecting them, and what the side effects are,” says T.  “It was very apparent that many of the medications made [the patient] feel anxious, have hallucinations, or made them feel worse, so they needed other medications to help with those side effects. Then they started giving their loved one cannabis-based products. They tried tinctures and she didn’t like the taste, so they started giving her marijuana chocolates. It was really apparent that when she had the chocolates, she was happier, would laugh, make jokes, was a little more present, and had less pain. When she wasn’t on them, she would scream and be more anxious and uneasy.” T is aware of the benefits of cannabis-based products, but doesn’t speak about the medication with hospice patients and their families because it’s against the hospice company’s policy. 

With staffers at assisted living, nursing home, and hospice facilities uneasy about discussing medicinal cannabis use, families with loved ones receiving end of life care are left to their own devices — often times led by a younger member of their family who discovered the benefits of such products on their own.

James Lumis, a Portland resident whose mother recently passed away, was reminded of the possible benefits of giving his mother cannabis during her time in hospice by his nephew. “He had some [edibles, which he’d made himself with recreational marijuana], so I asked my mom if she was open to trying it so she could eat, and she was,” explained Lumis. Not only did the cannabis products help his mother’s appetite, but they seemed to relieve painful constipation caused by her prescription painkillers, while easing her anxiety and diminishing her pain. Due to a lack of research and resources to consult regarding proper dosages and strain types, James tested the products on himself before giving them to his mother. “I didn’t give her anything until I tried it. I was her guinea pig,” he adds.

James Lumis of Portland, Oregon

“If cannabis was federally legal, I feel like I would have had more information when I needed it,” says Lumis. Cannabis’ federal illegality not only deters care providers from prescribing cannabis-based products, but it also results in a lack of reliable research, as many U.S. institutions have been dissuaded by the plant’s controlled legal status. With Canada’s newly adopted cannabis policies, physicians have expressed excitement about the scientific findings expected to come from a country now free of many previous restrictions on marijuana studies

Dr. Allan Frankel, a physician based in Santa Monica, California, recognizes the lack of resources surrounding cannabis dosing recommendations for hospice patients and those in need of end-of-life care. Dr. Frankel, who says he cured himself of a debilitating viral chest infection by using cannabis, offers in-office and phone consultations for patients who are seeking more information on medicinal marijuana — a service that James Lumis and his mother likely could have benefited from. “I think the odds of the federal government stepping in on an 85-year-old lady, who’s on death’s door getting some relief in a legal state from cannabis, are slim,” says Dr. Frankel.  

As far as potential consequences of doctors in California prescribing medical cannabis, attorney Iverson says that if the federal government wanted to get involved, a revocation of medical license would be the worst case scenario; “But that decision is really on a state by state basis… I haven’t heard of any cases in California where there’s been reprimand for this… But then, there aren’t many doctors that will do it.“

Dale Gieringer, the director of California’s branch of NORML (the National Organization for the Reform of Marijuana Laws), has been on the front lines of cannabis legal reform long before the Golden State’s passage of Proposition 215 in 1996 — the nation’s first medical marijuana law. Advocates battling HIV/AIDS (then an often terminal disease), along with senior citizens suffering from cancer, were instrumental in building support for California’s first medical cannabis program. However Gieringer explains to MERRY JANE that originally, “Prop 215 was in no way intended to be limited to terminal illnesses. Our opponents tried to paint it that way so as to limit its application, but we were very definitive about it being for any disorder for which marijuana provides relief.” 

He foresees marijuana being legalized on a federal level in the near future: “Most of the [federal] legislation now is all-out legalization of some sort. I think the bill that has the best chance of approval is a bill called the STATES Act, which basically says that anything that’s legal under state marijuana laws will be considered legal under federal law.” Gieringer believes that after the presidential election in 2020, there’s a good chance the U.S. may see federal reform. “I’ve never been one to predict that legalization was just around the corner, but I can see it now… even the head of the [U.S. Food and Drug Administration], Scott Gottlieb, said that federal reform looks inevitable.”

Until then, medical professionals and caregivers for patients approaching the end of their lives will have to continue using their best judgment on how to navigate the remaining legal challenges around medicinal marijuana. Echoing nurse Lance Pool’s belief of doing what’s best for the patient, Dr. Frankel says, “We have to all be a little braver just to do the right thing. You decide what’s best for that patient in that moment, and you do it. If you do anything short of that, you’re not practicing according to [medical] code.”

Complete Article HERE!

Why we need end-of-life rituals

By

When someone dies, it is common to mark their death with funeral rituals, but the idea of using a ritual to mark someone as they near the end of their life is less common. Yet rituals could provide succour to all involved at this difficult time.

Rituals help people to mark and make sense of the big life changes that we all go through, such as births, marriages and deaths. Rituals work when the people involved understand what is going on. For example, for a non-religious parent, it may make sense to have a secular baby-naming ceremony, rather than a religious christening or baptism to welcome their baby to the community.

Ritual is often thought of as actions that express shared meanings, such as lighting candles during a funeral ceremony. They could also be words or music, such as reading a poem or playing a favourite song. Rituals can help us deal with change, partly because of the shared understandings we have of the actions involved, but also because those ritual actions tend to be familiar to us. Using familiar words and actions in an unfamiliar situation can help us find our way through it.

We are used to thinking of funerals as being for the living. The funeral can be an opportunity for bereaved people to mourn, to share stories about the person who died and to come together with others who are grieving. Funeral ritual can help people to feel more in control when faced with a terrible loss.

The period of time when someone is dying, however, is viewed differently. The focus is on the dying person and on making sure that they receive the care they need. But ensuring that the person who is coming to the end of their life receives the best care does not mean that those who love them need to ignore their own welfare.

Gathering family and friends around the bed of a dying person is called keeping vigil. It is a common practice in many parts of the world. Traditional Xhosa healers in South Africa, for example, describe death as a collective matter. It is important for the family to be at the bedside to ensure a good death. Family presence allows the dying person to be at peace and to let their relatives know what they want for the family’s future. This doesn’t just benefit the dying person, but also helps family members, offering a chance to mend relationships.

Being with the dying person, whether sitting quietly or chatting, gives people the chance to say goodbye. It is also an opportunity to share the experience with other family members or friends, in much the same way that mourning is shared at a funeral. For some dying people and their families, music is used as a shared experience in the final hours.

Memory box

Memory boxes are another form of ritual that is becoming more common. Women in Uganda recently began the practice of creating a memory book or a memory box in order to share their life story and create a sense of belonging for their children after they had died.

A memory box can also be assembled by the family or friends of the dying person and doesn’t have to be intended for children. Such a box can hold mementos, photos, written notes, a CD, copied poems; anything, in fact, that can act as a reminder of the person.

Mementos of life’s journey.

Thinking about and discussing how to manage the end of life may be useful for both the dying person and their family and friends. The unknown is difficult to deal with so understanding that they are taking part in a ritual of accompaniment and leave-taking can help a family make sense of and mark the change that they are going through.

Death is about the biggest change any person will encounter, whether it is their own death or that of someone close to them. Using rituals that express shared meanings to help them feel more in control at a time of loss can only be a good thing.

Complete Article HERE!

The Growing Acceptance of Medical Aid in Dying

More and more voters support options to allow the terminally ill to peacefully end their suffering. Politicians have little to fear from the issue.

By Kim Callinan  

While expanding and protecting health care was the number-one issue for voters on Nov. 6, what has gone unreported is that elected officials can now safely run on the issue of expanding and protecting end-of-life care options. For decades, lawmakers feared that sponsoring medical aid-in-dying bills that would allow terminally ill adults to have the option to peacefully end their suffering would harm their chances of getting re-elected. This year’s elections proved those concerns false.

Nearly all of the lead sponsors of bills in 28 states to authorize medical aid in dying in 2017 and 2018 who ran for re-election won (13 out of 14 state senators and 49 out of 53 state representatives). Voters also elected or re-elected at least five governors who publicly supported medical aid in dying: David Ige in Hawaii, Gavin Newsom in California, J.B. Pritzker in Illinois, Gretchen Whitmer in Michigan and Michelle Lujan Grisham in New Mexico. (Grisham’s opponent, Steve Peace, vehemently opposed medical aid in dying.)

In addition, Congressman Keith Rothfus of Pennsylvania, a sponsor of a failed resolution to overturn Washington, D.C.’s Death with Dignity Act and another House resolution condemning medical aid-in-dying laws nationwide that garnered only 13 co-sponsors, was defeated for re-election.

None of this should be particularly surprising. A majority of voters embraced this issue long before many elected officials and political candidates did — since 1996, according to Gallup’s annual polling; its 2017 poll shows that 73 percent of Americans support medical aid in dying, including 81 percent of Democrats and Democratic-leaning independents and 67 percent of Republicans and Republican-leading independents. In short, medical aid in dying is a rare bipartisan/nonpartisan issue. Five GOP legislators are among sponsors or co-sponsors of bills allowing medical aid in dying.

This unusually strong, wide-ranging support explains why 29-year-old Brittany Maynard, who moved from California to Oregon in 2014 to access its medical aid-in-dying law, was able to capture the attention of the American public. Three weeks after her YouTube video went viral, generating international news coverage, a YouGov poll showed that 38 percent of American adults — 93 million people — had heard her story.

Inspired, in part, by Maynard’s advocacy, since 2015 California, Colorado, the District of Columbia and Hawaii have enacted medical aid-in-dying laws. Today, D.C. and seven states accounting for nearly one out of five Americans have the option of medical aid in dying.

This movement is picking up major momentum, particularly among the millions of baby boomers who have watched their parents die in needless suffering because they did not have the option of medical aid in dying.

In addition, we know that these laws improve care by prompting conversations between doctors and patients about all end-of-life options, including hospice and palliative care. Oregon’s 1994 Death with Dignity Act has helped spur the state to lead the nation in hospice enrollment.

This helps explain why a 2016 Medscape survey of physicians showed doctors supporting medical aid in dying by nearly a 2-to-1 margin, 57 percent to 29 percent, up from 46 percent support in 2010. Just last month, the American Academy of Family Physicians dropped its opposition to medical aid in dying and adopted a position of “engaged neutrality,” noting that “family physicians are well-positioned to … engage in creating change in the best interest of [their] patients.” Medical societies in D.C. and nine states have adopted similar positions, and the New York State Academy of Family Physicians has endorsed allowing medical aid in dying.

Perhaps the most important benefit of medical aid in dying is that it is transforming end-of-life care in the same way childbirth care was transformed decades ago. As more states implement medical aid-in-dying laws, more and more patients have a voice in how they live the final chapter of their lives and how they die. Just as obstetricians and gynecologists now ask women for their input about who they want in the birthing room and whether they want to receive medication, doctors in states where medical aid in dying is authorized now are engaging in similar conversations with terminally ill patients.

In time, we will live in a world where health care providers fully inform their terminally ill patients about the benefits and burdens of all available forms of treatment and where deciding to end suffering and allow for a peaceful death will be a widely accepted medical option. The sooner we get there, the better.

Complete Article HERE!

At a Death Cafe, Tea and Couscous Make Mortality Easier to Swallow

Let’s talk about death, baby.

Attendees gather around a table to talk death at Tagine.

by Abbey Perreault

On a brisk November night, Tagine, a Moroccan restaurant tucked away on a quiet side street near Times Square, is alive with conversation. Nearly 20 people pack in around two tables cluttered with heaping, communal plates of steaming couscous, chickpeas, and yellow lentils. People exchange stories, laughs, and soft wedges of bread dipped in bright green chermoula. Multi-colored disco lights dance across the walls, and the swell of conversation rises and falls against a soft pulse of music and noise from the bar. A young, blonde woman walks through the door and surveys the crowd.

“Is this the singles’ event?” she asks, pointing to the tables. I shake my head.

“Nope,” I tell her. “This is the Death Cafe.” She thanks me, brow furrowed, and heads to the back of the restaurant.

While it may seem strange for conversations about death to be conflated with courting, our group could easily be mistaken for speed daters. Relatively young, open, and inquisitive, my dining companions exude a curious energy, solid appetite, and hunger for good conversation. But, unlike the majority of small talk with strangers, dialogue here is all about death—from philosophical musings about post-death life to the physiological components of dying.

“When the body is dying there are lots of … secretions,” says Tanya, a nurse who works in the intensive care unit at a local hospital. “We sometimes give patients medicine to try to dry them out and stop them from gurgling.”

“Is that what they call the death rattle?” someone asks from across the table.

Those noises, we learn, arise once the dying person can no longer swallow or clear fluid from the throat, and often indicates that they’re within a day of passing. But as disturbing as it may sound, the death rattle typically doesn’t cause the individual pain or discomfort. We talk about the sounds of death, and how to attempt to interpret them, sipping mint tea from delicate, warm glasses. “Having to take care of somebody who’s dying, and their family … it can be a lot. I want to talk about it with my husband, but I don’t want to fatigue him with it,” says Tanya. “But I think about it all the time.” It can be months, even years, she says, before she stops thinking about a patient who has passed away under her watch.

But not all Death Cafe diners come from professions that deal with death. According to Nancy Gershman, the facilitator of our cafe, attendees come from all walks of life, from college students with a philosophical curiosity about death to those who have witnessed something supernatural. Some people want to understand death better in order to prepare for their own. “I had this one 80-year-old who kept asking these roundabout questions,” recounts Gershman. “It turned out she wanted to know what dying was like.”

Hot tea helps the conversation flow.

Gershman, who has been facilitating this Death Cafe for the past three years, says there’s no agenda. Meetings often meander thematically, driven by the questions and stories people bring to the table. But she’s quick to remind me that, while the Death Cafe is a safe space to talk about loss, it’s not a support group. “When you lose someone, there’s a particular period right after it happens where you keep repeating, like a groove on a record,” she says. “We’re not here to stay stuck in that groove.”

Instead, Gershman says, it’s a place to speak openly and inquisitively about the end of life. Formally established in 2011, the original Death Cafe arose as the brainchild of the late founder, Jon Underwood, in his East London home. Inspired by Swiss sociologist Bernard Crettaz’s café mortel, he set out to create an intentional space dedicated to talking death in order help people “make the most of their (finite) lives.”

Strangers began gathering in Underwood’s London basement to sip tea, munch on cake, and casually discuss death and dying. Before dying unexpectedly from undiagnosed leukemia in 2017, Underwood and his mother created accessible guidelines and protocols so anyone could create Death Cafes within their own communities. Since then, more than 7,300 cafes have cropped up in over 60 countries—an indication that they address a deep-seated desire to understand death, one that’s been ignored, if not avoided.

After remaining relatively tight-lipped on the topic for centuries, those in the U.S. are more willingly peeking into the abyss—a cultural moment that’s been dubbed the “positive death movement.” From the growing demand for end of life doulas to the creation of apps that send daily reminders that you’re going to die, it’s apparent that more people are interested in confronting death.

“There’s a growing recognition that the way we’ve outsourced death to the medical profession and to funeral directors hasn’t done us any favors,” Underwood told the New York Times in 2013. By avoiding the topic until it happens, we’re left with all sorts of strange feelings about this universal life event. And yet, many of us prefer to keep it at a distance.
Part of this aversion, Gershman suggests, is that talking about it reminds us that it’s real. It shakes the comfortable illusions many of us cling to—that our bodies and brains are ours to control and keep. Sitting around the table, talking about how to financially plan for our funerals (to keep our partners and families from going into debt) can feel alien, even morbid, at first. But, through sips of mint tea, mouthfuls of warm lentils, and a few laughs, I’m reminded that it’s as necessary as making a financial plan before any big life event, such as going to college or getting married.

The strangeness of talking about death, Gershman says, goes beyond the mere fact that it’s been a longtime taboo topic in some cultures. There’s a lot of subject matter that’s taboo, she says, but death is different—largely because it’s inevitable. She compares it to the sex-positive movement in the U.S., where much of the silence surrounding sexuality has been stripped away to increase transparency and dismantle stigma. “People still have a choice when they’re talking about sex. You can either have sex zero times … or many times. But with death, you don’t have a choice. It’s going to happen, and it’s not going to be in your control.”

Nancy Gershman and a cafe attendee.

While making death less taboo will help us understand it and plan for it, it can’t help us prevent it. So planning for it is both frightening and necessary. But by ensuring tea and food are present, hosts of the cafes are able to make discussions of dying a little less scary. “There’s a superstition that if you talk about death, you invite it closer,” said Mr. Underwood. “But the consumption of food is a life-sustaining process. Cake normalizes things.”

My tablemates seem to agree that eating makes engaging with death easier. Tanya mentions that the pediatric unit has a giant bowl filled with candy, and it’s intended for the staff, not the patients. Digesting and processing death might be easier when accompanied by something sweet, something that nourishes us, something we understand to be routine. Like death, eating is something all living bodies simply have to do.

As the night progresses, one attendee whose husband passed away a few years ago tells me that, when she lost him, she lost her appetite, too. But in the past few years, her love for food, particularly dark chocolate, has returned forcefully. “Now, I eat it and I can’t stop,” she chuckles. She reaches into her purse, shuffling around a bit before pulling out three wrapped Hershey’s Dark Chocolate with Almonds nuggets, and hands one to each of us, smiling.

Laughter is common at the Death Cafe.

Even after years of facilitating Death Cafes, Gershman finds herself surprised by the feverish interest the cafes continue to garner. Month after month, newbies and returners come to talk death with strangers. A big part of the appeal, she ventures, is that death is great fodder for in-person conversation. “This is a subject that people can stay on, as opposed to babysitters and real estate,” says Gershman. “Death is such a rich topic that you could approach it in a million different ways and never be bored.”

Back at Tagine, conversation shifts from the life and death lessons learned from watching Golden Girls to the weirdness of grieving on social media. In a group of complete strangers, no one looks awkward or distracted, and no one is fiddling with a phone. “I really think that people are starved for interesting conversation at dinner,” laughs Gershman.

As I gulp down my piece of chocolate, another swell of laughter erupts from the table to my left. In comparison, the singles’ event in the back seems relatively lifeless. Gershman tells me that what I’ve seen and felt tonight is no anomaly.

“One of the waiters told me, ‘Whenever your group comes in, there’s always such great energy.’” she says. When she told him that this was a Death Cafe, a group focused on death and dying, he thought he had misheard her. “I think it’s because there’s a tremendous sense of relief. When you have relief, there’s more laughter.”

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