‘I don’t want to compete with this disease’

— What physician-assisted death is like for a family

Margaret Handley wrote the essay so her children understood their grandmother’s experience and to help others learn about physician-assisted dying.

By Meghan Holohan

It started with weakness and pain when walking. Then Jacqueline Shapiro had a deep lesion on her leg before she broke it, oddly, and doctors struggled to set it. The pain medications caused her to have bad reactions and her energy waned. Eventually doctors learned that the 85-year-old had lymphoma. She underwent three grueling months of surgery, radiation and chemotherapy, but it only left her exhausted and feeling worse.

“It can cause delusions and a sort of psychosis. And it just was horrible, just horrible. And it was really hard for her to get her pain stabilized,” Margaret Handley, her daughter who is an epidemiologist living in the San Fransisco Bay area, told TODAY. “If you looked at those episodes medically, they were going well, but it was just part of an escalating discomfort for her. She increasingly felt like ‘I don’t think this is a good place for me to be.’”

Shapiro worried about spending the rest of her life undergoing painful treatments that might not even cure her cancer.

“She didn’t want to be lying there dwindling while people take care of her,” Handley said.

When a palliative care doctor visited Shapiro to discuss her pain, they started talking about California’s End of Life Act. People with terminal illnesses, who meet a certain criteria, can request drugs to aid dying, according to the California Department of Public Health. Similar legislation exists in eight other states. Compassion & Choices, a nonprofit working to improve patient rights and individual choice at the end of life, recently reported that Brittany Maynard’s advocacy of “death with dignity” inspired the passage of medical aid dying laws in Washington, D.C, Colorado, Hawaii, New Jersey and Maine.

Shapiro met those requirements. Hearing about the option of medically assisted death seemed to lessen her burden.

Handley shared more about her mother’s death in an article in the Annals of Family Medicine.

“She told me right away after the doctor left, ‘That’s what I’m going to do — physician-assisted dying. I don’t want to compete with this disease — that’s not what I want to do with the rest of my life,’” she wrote. “I sat with her and my sadness and then, over the next few days, we set upon the logistics to put her right-to-choose into motion.”

While her oncologist thought there was a possibility that the cancer could go into remission, Shapiro wasn’t sure if she could endure more treatment. Then she spoke with a doctor from the physician-assisted dying group, who described how the process works. He noted that many people request the drugs but don’t ultimately go through with it. Handley felt impressed by how all three doctors acted when advising her mother.

“I don’t think that (the doctors’ input) affected her decision,” Handley said. “But it was also much better that she heard them and witnessed them doing their work and felt like she was part of the narrative, not outside of it.”

Shapiro loved nature and the forest. As a young woman, she spent her summers at Yosemite and lived in the Sierra Nevada mountains until age made a remote living situation a little tougher. She had a garden with plants from the forest and an ornery cat name, Darcy, named after Mr. Darcy from “Pride and Prejudice.” While she was sick, she worried about his well-being. Making the decision for physician-assisted death put her mind at ease about what would happen to her pet, her plants and her life. This allowed Shapiro to say goodbye to her family the way she wanted, watching nature shows and cat videos, enjoying one another’s company.

“We were lucky to know it was coming and to be able to say let’s have these moments together,” Handley said.

Handley and her brother sat with their mother, with Darcy on her lap. As Handley read the poem, “Evening” by Rainer Maria Rilke, her mom passed away.

“It was a really powerful experience to be able to sit with someone who is making this choice,” Handley said. “That was a good experience for us to share.”

Handley said she wrote the essay because she felt there were so few personal stories about what physician-assisted death is really like. She also hoped that by sharing the experience her three children would also better understand her mom’s choice and experience.

“I wanted to write down what happened with my mom’s decision-making so that they would understand,” she said. “I thought this was just adding a little more real personal experience of what (physician-assisted death) looks like in one given situation.”

Complete Article HERE!

Why Arun Shourie concludes that the ultimate preparation for death is simply love

The former Union minister and veteran journalist’s latest book, ‘Preparing for Death’, is both a contemplation of and an anthology on death

by Pratap Bhanu Mehta

Arun Shourie is an unflinching seeker. He has an exemplary ability to face the toughest questions. After a bracing meditation on the problem of suffering in Does He Know a Mother’s Heart (2011), Shourie now turns to Preparing for Death. There used to be a joke that the purpose of literature is to prepare you for the good life, while the purpose of philosophy is to prepare you for the good death. But it is hard to understand our own extinction. Broadly speaking, two diametrically opposite views are invoked to reconcile us to death. One is that we don’t really die; in some form, through an incorporeal soul or something, we continue to exist. The other unflinchingly accepts that we just are evanescent matter and nothing else. Both approaches address the question of dying by simply saying “there is nothing to it.” There is something to this strategy, but it cannot make sense of the significance of life. It seems we can either make sense of life or of death, but not of both.

Shourie’s book takes a brilliantly different pathway. The book has three distinct themes. The first, the most powerful and meditative section of the book is not so much about death as the process of dying. He documents with detail, “great souls” experiencing the often painful dissolution of their own body — the Buddha, Ramkrishna Paramhansa, Ramana Maharshi, Mahatma Gandhi, and Vinoba Bhave, and, as a cameo, Kasturba. All of them give lie to Sigmund Freud’s dictum that no one can contemplate their own death. But what emerges from these accounts is not so much the conclusion that they all faced death unflinchingly; most of them have a premonition. It is also not about capturing the moment where the good death is leaving the world calmly. It is rather what the suffering body does to consciousness, all the memories and hard decisions it forces on us.

But the relationship between the body and consciousness goes in two different directions at once. On the one hand this suffering is productive: consciousness works through this pain. On the other hand, even the most exalted soul does not escape the utter abjection of the body. The most poignant moment in this section is not the calm and plenitude with which these exalted souls face death; it is the moments where even the most powerful souls are reduced to abjection by the constraints of the body. The only one rare occasion where Ramana Maharshi ever loses his cool is in his now utter dependence on others for most basic bodily functions. The problem of dying is not that you cannot ignore the body; it is that the body does not ignore you.

The second theme of the book is to take a sharp scalpel to false comforters of all religions and philosophies that promise the everlasting soul, or the preservation of bodies only to subject them to torment in hell. This metaphysical baggage makes dealing with death harder and is a total distraction. This section is less generous in its interpretive sympathies. The third theme of the book, interspersed in various parts, is about the discipline of dealing with your own body as it is in the process of dying. The book impressively marshals a variety of sources, from the Tibetan Book of the Dead, with its incredible imaginative exercises that make you take in the whole of existence, to Jain sources of Sallekhana, and various meditative techniques to inculcate a certain kind of mindfulness. But mostly one gets the sense that the ultimate preparation for death is simply love, something that can endow the evanescent moment with significance.

But this is a seeker’s book. It is in parts profound probing, honest but not dogmatic. Its immense value comes from the fact that the book is both a book and an anthology on death, with extracts from not just the words of those experiencing the process of dying, but an astonishing range of sources: from Fernando Pessoa to Michel de Montaigne, from yoga to the Tibetan Book of the Dead. For the politically inclined, there is an ambivalently revealing account of the Prime Minister’s visit to Shourie while he was in the ICU. All throughout, the book is laced with judiciously selected poetry: the startling moment where Gandhi recites the Urdu couplet to Manu: Hai baha- e-bagh-e duniya chand roz/ Dekh lo iska tamasha chand roz, a register you might associate more with Guru Dutt than Gandhi. There is a lot of Kabir, of Basho poetry and haikus. One stunning one: Circling higher and higher/At last the hawk pulls its shadow/From the world.

This haiku caught my attention because I happened to be reading a stunning essay by Arindam Chakrabarti at the same time, “Dream, Death and Death Within A Dream”, in Imaginations of Death and the Beyond in India and Europe (2018), a volume edited by Sudhir Kakar and Gunter Blamberger, that reads as a great philosophical complement to this one. That volume has a powerful piece by another brilliant philosopher, Jonardan Ganeri, on illusions of immortality that deals with a source Shourie cites at length: Pessoa. Chakrabarti’s essay ends with the insight of Yoga Vashishtha: To be born is to have been dead once and to be due to die again. Shourie is perhaps right: Can we really unravel what it means for the hawk to pull its shadow from the world? Does the shadow reappear if it flies lower?

Complete Article HERE!

Are you prepared to die?

I am, and that’s the right way to live.

Barry Owen, my friend and former partner, hiking in California in 2017. In his final weeks, Owen completed the necessary to-dos in preparation of his death. He died a year after his diagnosis of pancreatic cancer.

By Steven Petrow

I am prepared to die.

No, I’m not suffering from a terminal disease (as far as I know). Nor have I been infected with the novel coronavirus that causes covid-19. But thanks mainly to the pandemic I have been motivated to complete about 90 percent of the necessary steps for end-of-life planning. I have taken note of the nearly 202,000 Americans who have died unexpectedly from covid-19 or its complications in the past seven months.

Most of these people, it’s fair to say, were not planning on a sudden death. Many died alone in hospitals, and too often they didn’t have the opportunity to bid loved ones farewell. Caring.com reported that before the pandemic hit, fewer than half those 55 and older had completed estate-planning documents (such as a will, a living will, and designating a medical power of attorney). Among those 18 to 34, it was a paltry 16 percent.

The No. 1 reason for everyone: I haven’t gotten around to it.

Covid-19 has claimed the lives of several people I know in recent months; sadly, they weren’t the only deaths in my personal and aging circle. Barry Owen, 67, a friend and former partner, died of pancreatic cancer in May, a year after being diagnosed. Shortly after being told he had Stage 4 of the disease, he posted on his Caring Bridge site, “To borrow a line from ‘Grass,’ a favorite childhood poem by Carl Sandburg: ‘What place is this? Where are we now?’ ”

That question — “Where are we now?” — resonated for me as the pandemic spread unabated. Who knows when the bell will toll for thee?

Actually, I’m not alone in having jump-started my death planning.

Recently, the New York Times reported on just such a “boom” due to the pandemic. So many questions. Who do I want to act as my medical power of attorney? Why do I need a living will? Do I want to be cremated or not? What songs do I want played at my funeral?

Not surprisingly, there are now new Web services — with checklists — specifically for this kind of planning. One of them, Lantern, whose mission is to be “the single source of guidance for navigating life before and after a death,” reported a more than 120 percent increase in users since the beginning of the pandemic.

With the obituary pages growing ever thicker these days, I’m reminded of the nadir of the HIV epidemic when gay men dropped out of sight only to turn up in a death notice soon after. In 1986, at age 29, I’d been given an AIDS diagnosis, then synonymous with a death sentence. Fortunately, it turned out the doctors had erred in making my diagnosis. But during those weeks when I feared dying, I began to make an end-of-life plan.

I didn’t get far. I got only as far as engaging a lawyer to draw up a will when I learned that my lesion was not Kaposi’s sarcoma, one of the cancers associated with AIDS. No longer facing an untimely death, I put my head back in the sand — which is to say I stopped responding to his emails — and the lawyer actually fired me as an unresponsive client. When I pleaded for one more chance, he gave it to me and I completed my first “Last Will and Testament,” and a living will, too, that detailed what medical treatments I wanted — and would forgo — if I could no longer give consent myself.

In 2006, I added a codicil to that first will when I bought a house with my partner, Jim. Oh, and I designated him as my medical power of attorney, bumping my sister down to the “backup” position.

Still, as I crossed the threshold to 50 and then again to 60, I made no other plans. In 2018, a year after Jim and I legally separated (we’d married in 2013), a new lawyer castigated me for taking no action. By leaving things as they were, my soon-to-be-ex would still inherit my part of our house equity (rather than my siblings) and he’d be making life and death decisions for me in the event I was incapacitated. (Yikes!)

Again, I found myself stuck in denial — over the failed marriage, and that like everyone else I’d die one day, too.

By nature I am a procrastinator, but this pandemic — all those deaths — has forced a new reality on me. In recent months, I’ve taken various steps to make sure I’m ready — or at least “readier” — for what my friend and literary agent Richard Pine likes to call, “The End.”

My will and living will are now updated. (I got rid of all mention of my ex in estate finances or end-of-life decisions.) In our family cemetery plot, I’ve chosen my place, and there are new notes in a manila folder for a memorial service and an obituary, although I’ve not actually written a draft like other really well-prepared friends I know. With a nod to Leona Helmsley and her much-spoiled Maltese, my new puppy will go to previously agreed-on guardians, along with a crate, some kibble and some money to cover future costs.

If anything, like others these days, I’ve come to understand the importance of getting one’s affairs in order. Greg Brock, 67 and a retired journalist, frets about having unfinished business, especially after his sister “dropped dead” a year ago.

“It was a shock, and her children were left with so many headaches with her estate, including no funeral plans,” he said.

Since then Brock has vowed to get his “act together, starting with the end.” He has bought a grave­site and is now ordering the headstone, which he admits “will be weird.” He hopes that looking at his headstone will spur him on “to organize other aspects of my life.” Good luck, friend.

I’m impressed by those I know who have such lofty but wise intentions: To set things in order sooner than later. But “why do today what I can do tomorrow?” has long been one of my favorite mantras.

Well, I’ve now ditched that aphorism, thanks to Marie Kondo, author of the best-selling “The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing.” I’ve gone though much of my stuff — applying her “delight test” — jettisoning and donating shirts and sheets, pots and pans, and bed linens and bandannas. (Although, had I known the pandemic would be still with us, I would have saved all those old bandannas to be used as masks/face coverings.)

The pandemic has also prompted me to say things I might not otherwise have. I’ve been making it a point to acknowledge those whom I love in a forthright manner, which has brought about reciprocal responses.

At the outset of the pandemic, I emailed Barry Owen a short note; at the time he appeared to be holding steady. I reminded him of our mutual friend, Denise Kessler, and explained that about the time she turned 90, we both “began ending all of our conversations with “I love you.” She and I continued that ritual until two weeks before she died at age 98, I wrote Barry, ending with the same message to him, “I love you.”

In his reply, he updated me on his condition. “No news is good news, which is to say, I’m still here.” He explained that he and Dan, his husband, “speak frankly with each other about death and what is it called? Oh yeah, end-of-life planning. But we don’t dwell on my condition or the future. We live our shared lives as normally as possible.”

And then he signed the email, “Love, Barry.”

In his final weeks, Barry completed the necessary to-dos in preparation of his death, his husband told me. And then he died, a year after his diagnosis, and a week after his first wedding anniversary.

By the time of his death, three months into the pandemic, I had finished my own death planning. I am prepared — but not ready to go.

Where to get help online

For those who need help getting started, here are some resources:

Lantern (lantern.co) is a free website with checklists and articles about end-of-life preparations.

Everplans (everplans.com) is a subscription-based online product for creating, organizing and storing your end-of-life plan.

The Conversation Project (theconversationproject.org) is a website focused on helping people talk about their wishes for end-of-life care.

Complete Article HERE!

‘To be in a room with that much love

— it’s priceless’

by RACHEL SUN

Anne Ross doesn’t think about death the same way she used to.

As a volunteer hospice worker for over a decade, she said, the work profoundly impacted the way she views, and talks about, death.

Anne hadn’t planned to volunteer when she was first introduced to hospice, she said. When she first stepped foot into Bonner Community Hospice over 11 years ago, it was with her mother-in-law — a woman who had recently experienced a loss in California.

“I just couldn’t believe how compassionate they were,” she said. “I had suffered some loss in my life, a husband and a fiance, and I had never received any kind of grief support. So to see this in action, I definitely wanted to be a part of it.”

Often, hospice has a bad connotation said Tami Feyen, RN hospice manager. Despite offering a wide variety of services to people with terminal ailments and their families, hospice is often overlooked.

“I know a lot of people think ‘wow, hospice, that’s dark. You know, who would ever want to [do that], or find joy in that,’” Tami said. “But the reality is, it is really beautiful. It is just such a gift to be able to be at someone’s bedside, and work with them through the process of their decision making and seeing those things that are most important to them come forward and be executed as they move through their journey.”

The role of hospice

Most clients who come into hospice care are individuals with a terminal diagnosis of six months or less to live. Clients are often referred by their doctors, and hospice services are covered by Medicare and Medicaid and many private insurances.

The range of services hospice offers go far beyond what many people might expect, Tami said. Some include help with pain management or caregiving. But another role of hospice, she said, is to help clients make the most of their time and help fulfill final wishes.

“We’ve had a tattoo party, someone who always wanted to get a tattoo, and the means to do that was not something that she had,” she said. “We’ve had people go on a last boat ride on Lake Pend Oreille, because that’s where their heart and soul is.”

Other times, she said, the hospice reunited estranged families and helped people share final moments with their parents. The work isn’t just comfort care, she said.

“There’s a lot of psychosocial, spiritual, emotional support that goes into our care,” she said. “It’s truly the most unique specialty that I could ever think of being involved in.”

Stories from hospice care

On Anne’s first hospice case, she said, she came to spend time with an elderly man in an assisted living facility. His daughter had requested hospice care, although her father’s physical needs were already taken care of. So, Anne said, she would visit, and the two would watch golf on television.

“I wasn’t really sure why I was there, because obviously, they have a staff,” she said. “One time when I left, he said, ‘I enjoyed you today.’ And we had hardly spoken, but just having a person, you know, a presence there … that connection [makes a difference].”

Recently, Anne said, hospice helped people in her own life. Only a few weeks ago her aunt, who lived in Chicago, passed, she said. But before she did, a hospice with similar services to Bonner General’s helped her make the most of her last few months.

“My mom and my aunts all had a happy hour at five o’clock, a cocktail party, where they had a drink and [had] some fancy hors d’oeuvres. And they had an early Thanksgiving,” Anne said. “My sister arranged a Zoom cocktail party where all of her nieces and nephews got to see her and she got to ask us all questions. And she and her sisters usually would go up to northern Wisconsin in the fall to see the colors. And this year, the sisters came to her house and they had a fish fry, a prime rib dinner, and played games and laughed. And that was the weekend before she passed away.”

Mary Faux, a local resident, said her husband received hospice care after a referral from his doctor.

“I thought, he’s just saying that, my husband is going to live,” she said. “That was a Tuesday, and hospice came several times in the 11 days that he lived.”

During that time, she said, the staff helped her, her husband, and her daughter immensely.

“It made his death more tolerable,” she said. “Even if you feel like he’s not going to die immediately or even within six months, the comfort that they bring to you is so rewarding.”

Rusty McKitrick, a home health aide and staff member, also came to the hospice after seeing their work firsthand. One particular patient she helped, a young man with cancer, stands out.

“He was fairly young, his wife and he had been fighting this for quite some time. They were very hopeful that the cancer — they had beat it, that the cancer was gone after the last surgery. He was in therapy doing very well, and all of a sudden he hit a wall and took a spiral downwards,” she said. “He was had been sitting in a recliner for two days, in too much pain, his wife couldn’t get him out of the recliner. So we were able to get his pain under control. Get him out of the recliner. And he was comfortable and happy by the time I left. Joking, telling jokes, just really being able to be part of his family and do things. It made me feel good to be part of that.”

The work can be heartbreaking, Rusty said. But it’s also incredibly meaningful, to her as much as the people she helps.

“I think they probably impact my life and give my life meaning as much as I do them. They’re just — they will always be a part of my life, whether they’re here or not, [and] I will always remember them,” she said.

Serving the community

Every year, Bonner General Hospice serves about 150 clients through end-of-life care, Tami said.

Right now, it is often being used almost as an emergency service, she said.

“So many people aren’t seeing their providers right now,” she said. “So what we’re seeing right now, with ever more increase, is very, very end of life referrals the last hours the last days. And that’s so unfortunate because that person and that family do not get to really journey through their end of life in a healthy way.”

When hospice is brought in earlier, she said, there can be big benefits to families as much as the patient.

Tami recalled a young mother years ago who was dying of cancer and wanted to leave messages for her four children as they grew up. She had lost the ability to write, and so the hospice stepped in.

“We just kind of developed a means to have her record her letters to her kids in her own voice,” Tami said. “This is way back when, and I know we could do it so easy now, but it was kind of a feat back then. And so having that gift to her children was really pretty awesome.”

In addition to the roughly 150 clients, the nonprofit hospice also serves around 700 community members a year through grief and bereavement programs. They also host camp for children who have lost loved ones, and both group and one-on-one counseling free to the community, regardless of whether someone has been connected with hospice before.

Anne, who took one of the grief classes with her daughter a few years ago, said the program helped them both talk more openly about her late husband’s passing.

“[It] had a profound effect on our relationship and the way we viewed his death,” she said.

‘A good death’

Not every story is happy, Anne said. People suffer tragic deaths. But the support they get from hospice can help people have control over how they live the rest of their life, and help families to find peace.

Before coming to the hospice, Anne said, she didn’t talk about death so openly. Death, she said, was only something sad. During the last decade, she said, her work with the hospice has shifted that perspective.

“[Years ago], my first husband passed away, and he died in a hospital. And I had a dear friend with me. And after he died, she said, ‘I’ve never been at a death, but it is just as beautiful as birth.’ And I thought she was crazy … I didn’t see it. But now that I’ve been working with hospice, I see it clearly. It’s all about the love, you know, in a room where this family is just loving this person as they leave their lives,” Anne said. “We commemorate all these special occasions in our lives. birth, first day of school, graduation, marriage, anniversaries, but nobody talks about a good death. Maybe that sounds morbid, but to be in a room with that much love — it’s priceless.”

Complete Article HERE!

Yellowknife teacher’s final lesson

— How to live a good death

Maureen Tonge at a Kundalini Yoga Retreat in October 2019 on the Greek island of Karpathos.

Maureen Tonge’s death from cancer at age 52 offers friends and family a window on how to live and die well

By Joanne Stassen

Maureen Tonge’s living room looks out over the houseboats on Yellowknife Bay. She’s sitting in a comfy chair by the window, wrapped in a cozy blanket.

“I’m in the end stages of my life,” she says matter-of-factly. “Yep. I’m dying.”

It’s Sept. 16. Three weeks from now, Maureen will die at home, with her husband Robert Charpentier, her sisters and her parents, by her side.

The way she wanted it.

But on this day, with the warm autumn sun lighting up her face, she wants to talk about dying, while she still has the strength and memory.

Tonge has taught at École Sir John Franklin High School in Yellowknife since 1992.

In the last decade she’s shared her Kundalini Yoga practice with people in the North and around the world.

Her family and friends say she’s taught them how to live a good life, and now, to die a good death.

‘I would prove them differently’

Tonge was diagnosed with glioblastoma multiforme in February 2019.

Doctors gave her four months and said she wasn’t likely to see the end of 2019.

Those giving the prognosis had no idea who I was … so I would prove them differently.
– Maureen Tonge

But Tonge wasn’t giving up that easily.

“I indicated to everyone who would listen that I was not my diagnosis nor my prognosis,” she told CBC North Trail’s End host Lawrence Nayally at the end of 2019.

Tonge went through chemotherapy, but also followed her own less conventional path, working with a naturopath, and with other healers. At diagnosis, the tumour was bigger than a golf ball, but a bit smaller than an egg. Ten months later it was more like a quarter of a marshmallow.

“Those giving the prognosis had no idea who I was,” she said.  “So I would prove them differently.”

Welcoming death

By June this year Tonge begins to feel pressure between her eyes, jitters and dizziness. A scan shows the tumour has grown aggressively.

By mid-September trips to the bathroom require a supportive arm. She has trouble keeping track of conversations.

“I’m pretty low functioning now,” she says. “It has been a bit of a struggle to wrap my head around the fact that has changed so dramatically.”

But the transition from fighting death, to accepting it, has become easier.

“It’s not been a struggle to wrap my head around the fact that I am dying. Dying is an inevitable part of living. I’m welcoming it.”

Teaching about life, and death

Maureen’s sister-in-law, Kathleen Charpentier has been helping with Maureen’s care and says hearing that gives her a lot of comfort.

“We live in a culture that is death-phobic and grief illiterate,” she says. “We often make the demand of dying people to live, and I think that’s a very hard demand.”

Eleven days before her death, Maureen’s condo is quiet, but there is still laughter, and a fridge full of food from friends. Hundreds of people have been posting on Maureen’s Facebook, sending messages of love and appreciation.

Maureen’s twin, Kirsten Tonge, has come from British Columbia, and soon her parents and two other sisters will be there, thanks to a special exemption from the territory’s chief public health officer.

Kirsten describes their relationship as “halves of the same whole” and remembers cuddling up with Maureen on the gurney, when they got the news that the tumours were growing again.

Their bond goes back to the womb, but Kirsten says she’s not sure she will ever understand the grace and gratitude her twin shows in the face of death.

“Earlier this month she said to me ‘I’m healing you know … it’s not the end.'”

Kirsten believes Maureen was talking about spiritual and emotional healing of trauma from her childhood.

“You know she had some deep wounds to her spirit, and emotionally. And she’s been able to truly dig deep and use the resources she’s built, and heal herself with the love and support of so many people.”

Former student Cailey Mercredi is there to give Maureen a massage.

“She’s taught me papier mâché mask-making and then Kundalini yoga,” Mercredi said. “To say she’s taught me about love would be an understatement.”

She added that being part of Tonge’s journey toward death will stay with her forever.

“Vulnerability and the trust there, is what brings us closer as human beings. This is how we make connections and how we build community.”

It’s just hard. Knowing I’m saying good-bye, and a part of me feeling entirely ready. And another part of me, not.
– Maureen Tonge

Tonge says she can’t say how she got to a place of peace about her death, but that it has been a process, something she’s been building toward through her life.Having people around her has been essential.

“I’m so grateful that I have family here but also friends that are like family. Connections have always been really important to me.”

For her sister-in-law Kathleen, sharing in Tonge’s last days is a gift.

“I think when you share your death, you are teaching others,” Charpentier says. “I think it’s important. Because we’re all going to be there someday.”

‘There is zero fear’

Tonge says she doesn’t know what happens after death, but she’s not afraid.

“Absolutely not,” she said. “There is zero fear. I know that we are composed of energy. And I don’t believe energy can be created or destroyed.”

She does feel sadness and it wells to the surface when she thinks about the ones she’s leaving behind.

“It’s just hard,” she says, between tears. “Knowing I’m saying good-bye, and a part of me feeling entirely ready. And another part of me, not.”

Two things bring Tonge comfort: Having no regrets, and the hope she has for her family and friends. It’s an echo of what her students of art and yoga have always heard from her: “I just hope that they are able to tap into their richest opportunities, and take full advantage of that.”

Kirsten Tonge says losing her twin will be the “the most difficult loss.”

“She has taught me that this time is only one of many … it’s not the final chapter,” she said.

“She may be gone in the physical sense … but I know without a doubt that her love will always be with me, and my love will always be with her.”

Complete Article HERE!

Hospices Work to Reach Underserved LGBTQ+ Communities

By Holly Vossel

The LGBTQ+ community has been among the groups historically underserved by hospice, with mistrust of the health care system at large and provider bias as leading roadblocks to quality end-of-life care. Hospice providers are increasingly working to better understand the LGBTQ+ population and improve access to care.

Issues of equity, inclusion and diversity have plagued the nation’s health care system. Providers of all walks are reaching deeper into the roots of disparities to understand barriers and expand care among underserved African American, Hispanic, Jewish and LGBTQ+ communities. While widespread data is scarce, available research indicates that the LGBTQ+ population is among those groups under-utilizing hospice care. According to a 2018 AARP study, 60% of the LGBTQ+ community are concerned about a lack of sensitivity to their needs among health care providers.

“When LGBTQ+ seniors need to access long-term care, most of them do not don’t feel safe and our health system in many places doesn’t make them feel safe,” said Ruth Thompson, national hospice medical director at Elara Caring during a session at the National Hospice and Palliative Care Organization (NHPCO) Interdisciplinary Conference. “We may have no idea that we’re taking care of people who are gay, lesbian, transgender and bisexual, but we are. It’s not unusual that they are not going to share with you that part of their personal history, which is really unfortunate because it’s who they are. The history of discrimination and poor education of the health care system really has had a profound effect on these people and compounded their fears. This population of people tend to have worse health outcomes as compared to their heterosexual and cisgender peers.”

With barriers such as patients’ fear of discrimination and general mistrust, hospice providers will need to build up awareness and break down biases around gender identity and sexual orientation to foster greater trust among underserved LGBTQ+ communities. A general lack of understanding and awareness among providers, along with stigmas, stereotypes and biases have been drivers of under utilization.

“No one is asking for special care or special treatment,” said Michael Kammer, medical social worker and bereavement counseling professional at Ohio’s Hospice of Dayton, during the conference session. “We just want care that takes into consideration the unique needs, concerns and experiences that we have had just like we do for any other minority population. We’re working on developing the awareness and ability to identify and join with people in the LGBTQ community. We need to shift our thinking about this from seeing the LGBTQ population as a special population to more inclusive care. Everyone needs the same specialized care, and it requires self-awareness on our part to shift how we perceive these groups and become aware of our own implicit biases, and being able to better interact with and support all our patients.”

Expanding education and awareness among hospice staff regarding the challenges, concerns and needs could extend reach for LGBTQ+ community members. Older LGBTQ adults often face issues such as economic insecurity, reduced caregiving support networks and misconceptions around sexual orientation and gender identity.

Hospice providers can improve access and experience of care by shifting organizational cultures and patient care practices, with executives leading the charge on deeper integration of LGBTQ+ education.

“In order to be successful and transform your organization’s culture, you must really start from the top,” said Kammer. “There needs to be buy-in at that executive leadership level. This requires a lifelong commitment, self-critique and self-evaluation and being culturally humble so that we can become aware of our implicit biases and mitigate those to provide truly person-centered care. This is not a one-and-done activity.”

Addressing gender identity and sexual orientation during the patient admission processes is one strategy toward greater LGBTQ+ inclusion in the hospice space. Providers will need to look beyond the scope of information on electronic health records to better understand how aspects such as gender identities and personal pronoun preferences can impact the experience and quality of care for LGBTQ+ patients.

Despite increasing advocacy, the field has much room to grow when it comes to improving cultural understanding and learning the specific social determinants of health for LGBTQ+ communities.

“People are struggling with LGBTQ+ issues that are impacting their psychosocial and spiritual situations, and it’s really critical that those patient discussions remain respectful,” said Thompson. “You can identify champions and have a team willing to stand up and make sure that people are having respectful conversations around care goals. When people are reaching the end of life, it’s important that they can be who they are and be with who they love. Those can really be challenges for the senior population because our LGBTQ+ elders are really the group of people who experienced a lot of that historical discrimination before the Gay Rights Movement many years ago. We’ve come a long way since then, but we still have a long way to go.”

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How Death Doula Alua Arthur Gets It Done

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In 2012, Alua Arthur quit her legal career to become a death doula. The problem was that she had no idea such a job existed. “All I knew was that there had to be a better way to give support during one of the most lonely and isolating experiences a person can go through,” she says. Now 42, she is a leader in the field of death work and has guided thousands of people and their loved ones through the end-of-life process. She has also trained hundreds of other death doulas through her company, Going With Grace, and is on the board of directors at the National End-of-Life Doula Alliance (NEDA)

This year, as COVID has forced so many Americans to cope with sudden loss and their own mortality, Arthur has been inundated with new clients and students as well as larger questions about how to handle constant grief. She lives in Los Angeles. Here’s how she gets it done.

On her morning routine:
I usually get up around 8:30 or 9:00 a.m. I’m a night owl, and it helps me in my work because people tend to die between 2:00 and 5:00 a.m. I’m not sure why; there are a lot of different theories about it. But I’m most awake and alert at that time. The witching hours. I love to burn my incense at 4:00 a.m. and greet the crows.

Most mornings I meditate right after I get up. After I meditate, I fill up my gallon jug of water and exercise. I need to sweat and move. I love anything where the instructor is like, “Faster! Go! Only ten more seconds!” Since we can’t do group fitness in person right now, I have to re-create it in my house. It doesn’t work quite the same, because I will stop and eat snacks in the middle of a video. But I’m trying. Exercise and meditation are the things that keep me sane and grounded. They’re the baseline.

On being drawn to end-of-life care:
Being around death has made me more honest. I see that what we don’t say chokes us as we die. People always think they have more time, and when they realize that they don’t, they have regrets about things they haven’t done. I try to do what I feel like doing right now. And if that means eating white-cheddar Cheetos for breakfast, I will. Which is what I did this morning. I won’t always be able to taste delicious things, so let me do it now.

On managing her clients:
I don’t take on more than one client at a time who is imminently dying, because I want to be on call for them. Whatever they need, I will do. When a client with just a couple of weeks or months left first comes to me, we’ll go through the long list of items to consider in death and dying, and then we’ll create a plan. That usually happens over the phone. Then I go to visit, put my hands on them, really see what their physical condition is, and see what kind of support they have.

I continue to visit every week or so until their condition starts deteriorating fast, and then I’m there more often. I might be there when they die, and if I’m not, I’ll come sit with their family or caregivers afterward until the funeral home comes. I may also help wrap up practical affairs — possessions, accounts, life insurance, documents. It’s exhausting for a family to have to think about that when they’re also grieving, and I’m equipped to help. I’ll sit on hold with insurance companies, make funeral arrangements, all that stuff.

Beyond those who are imminently dying, I often have several clients who need end-of-life planning consultations. I can take on a couple of those at a time. That could be someone who has just gone on hospice and it doesn’t look that bad yet, or someone who just received a diagnosis and wants to prepare.

On winding down after an intense day:
I’ll drink wine and hang out with a lover. I’ll go out dancing until 5:00 a.m. Sometimes I just want to shut the brain off after a long day, and the best way to do that is by spending time with friends and people who tickle me. But it’s also good to spend a lot of time alone, which is the default these days. I like silence.

On becoming a death doula:
I spent the bulk of my career in legal services in L.A., working with victims of domestic violence. Then there were some big budget cuts, and I wound up getting stuck doing paperwork in the courthouse basement. I was already depressed and burnt out, but it blossomed into an actual clinical depression. So I took a leave of absence and traveled to Cuba. While I was there, I met a German woman who had uterine cancer and was doing a bucket list trip. We talked a lot about her illness, and her death. She hadn’t been able to discuss a lot of those things before, because nobody in her life was making space for her to talk about her death. Instead, they’d say, “Oh, don’t worry. You’re going to get better.” I came back from that trip thinking I wanted to be a therapist who worked with people who were dying.

I applied to schools to become a therapist, but in the meantime, my brother-in-law got very sick. So I packed up and spent two months in New York with him. That experience gave me a lot of clarity on all the things we could be doing better in the end-of-life processes. It was so isolating and I couldn’t understand why. Everybody dies — so why does it feel so lonely? After that, I did a death doula program in Los Angeles, called Sacred Crossings, and then I founded my company, Going With Grace.

On leaving her law career (and a steady paycheck):
It wasn’t a hard decision to leave my job as an attorney. The challenging part had more to do with identity and what achievement means. I was born in Ghana, and we’re all raised to be doctors and lawyers and engineers. So I was going against societal expectation and parental expectation. It was also tough to be broke for a long time. My student loans were in forbearance. I spent a lot of nights lying on my mom’s couch wondering how I was going to make things work. If my friends were going out, they’d have to pay for me or else I couldn’t join them. To support myself while I was starting my business, I worked part-time jobs at a hospice and a funeral home.

Eventually, I started hosting small workshops about end-of-life planning. I charged $44 dollars for people to come together and learn how to fill out the necessary documents. Now I have my own doula training programs. I have about 100 students at the moment, all online.

On charging for her services:
I have to navigate the financial conversations with a lot of directness. Part of the challenge is that our society doesn’t see the financial value of having somebody be kind and supportive. Being able to hold so much compassionate space when somebody’s dying — that is a skill. It needs to be compensated highly.

On living with grief:
I’m constantly grieving with and for my clients and their family members, all the time. There’s no fixing it. I have to be present with my feelings and let them wash over me, in whatever expression they take. If I try to shut off that part of myself, it becomes much harder to function in everyday life. Grief doesn’t always look like crying. Sometimes it looks like anger, promiscuity, or eating everything under the sun. Like all things, it’s temporary.

On how COVID has changed her work:
We have to rely much more heavily on technology and remote communication. There’s also a lot more interest in the death doula training program. Death is on a lot of people’s minds, and I’ve seen a lot more people starting to do their end-of-life planning — mostly healthy people in their 40s with young kids. A lot of people have seen younger people die suddenly, and it’s changed their perspective.

On her own end-of-life plan:
I would love to be outside or by windows. I want to watch the sunset for the last time, and I want to have the people I love around, quietly talking, so that I know they’ve got each other after I leave. I want to have a soft blanket and a pair of socks because I hate it when my feet are cold. I want to smell nag champa incense and amber. And I want to hear the sound of running water, like a creek. I’d love to enjoy all those senses for the last time. And when I die, I want everybody to clap. Like, “Good job. You did it.”

I want my funeral to be outside, and I want all my jewelry to be laid out. As guests come in, they grab a piece and put it on. I want my body to be wrapped in an orange and pink raw silk shroud. They’ll play Stevie Wonder — “I’ll be loving you always” — and everyone will eat a lot of food and drink whiskey and mezcal and red wine. There will be colorful Gerber daisies everywhere, and they’ll take me away as the sun goes down. And when they put my body in the car, the bass will drop on the music, and there will be pyrotechnics of some sort. I hope my guests have a grand old time and dance and cry and hug each other. And then I want them to leave wearing my jewelry.

Complete Article HERE!