09/21/17

Helping create a better death is a new doula concept

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By Gary Rotstein

On a sunny Sunday afternoon marked by perfect September weather, a gathering of nine women and one man wasn’t focused on talk about nature, recreation, hobbies or other aspects of enjoying life.

This group instead met for two hours in a downtown Greensburg office building to discuss the dying process and how to make it better.

The attendees at a free community training session about serving as end-of-life “doulas” heard Promise Hospice President Elizabeth Aungier, who hosted the session, talk about the goal of “a better death” for both terminally ill patients and their families. The former nursing home administrator has run her Greensburg hospice since 2010, but in navigating her own father’s death in 2015 she needed to lean on a friend for help.

She realized an additional layer supplementing a hospice team would be useful for families during a daunting, emotional process that is new to many of them.

“After my dad passed away I figured, if I needed extra support and I’m supposed to be an end-of-life expert, what about the individual that doesn’t have that knowledge? How can we help fill the gap between what the medical profession provides and maybe what a family needs?”

Ms. Aungier became intrigued by what she heard of end-of-life doulas and went through training herself last year in New York City from Doulagivers Inc. There she learned communications and technical skills related to helping people with their dying wishes and the closure they sought in relationships with others, as well as more procedural issues such as advance directive preparations and the type of funeral or memorial services they wanted.

Doulas are taught to sit, talk with and — especially — listen to terminally ill people in a non-judgmental way. If it goes right, they learn about their lives, build a rapport and help them face whatever fears they may have about the future. They can do so without the baggage of family members or the requirements of hospice staff who may be on a busy schedule to provide personal care and pain relief before moving on to the next client.

“The doula may spend extensive time helping an individual do a life review or legacy project or tangible account of history we can give to people they leave behind,” Ms. Aungier added, while emphasizing they are to leave medical issues to professionals such as a hospice nurse.

The end-of-life doula concept is new in southwestern Pennsylvania, she said, with New York and California among the still relatively rare places in the country where organizations like Doulagivers provide detailed training for a fee. Doulas are more commonly associated with births; while employed in only a small minority of those, they are nonetheless accepted as providing non-medical emotional and educational support for new mothers.

In either case — for births or deaths — doulas generally lack government certification or regulation and are paid by private resources rather than Medicare, Medicaid or other insurance.

Ms. Aungier sought to supplement her hospice business by starting PromiseCare Doulas in June, advertising $50 hourly services to support dying individuals through their final stages, but it has been slow to find clients. Ms. Aungier is undeterred, believing it’s an important and helpful concept. She has had most of her hospice staff trained in it to help them in their regular duties as aides, nurses and social workers.

“We’ve learned how to be more one-on-one now with patients in the dying process, understanding better how to walk them through that,” said Ginny Cabala-Carper, 28, a hospice aide for five years who was among staff in the spring going through weekend-long doula training sessions Ms. Aungier arranged for them.

“This will help us in our personal life, too,” Ms. Cabala-Carper said. “We’re all going to have loved ones die someday, and this helps me see what my parents and grandparents will need.”

Sunday’s session was the first of a series of free, two-hour educational presentations Ms. Aungier said she intends to provide for anyone from the community. They could be for those interested in being hospice volunteers, whether for her operation or others. They could also be for people simply interested in increasing knowledge to help relatives, friends and neighbors.

And others could treat it as the first step to someday hanging a shingle to offer service themselves as an end-of-life doula, though Ms. Aungier cautioned that they shouldn’t expect an immediate flood of calls.

“People don’t really seem to get it yet,” she said, having heard more commonly from people interested in getting help with bereavement after a death.

Arleen Hawk of Greensburg, a retired hospice social worker who was among the group Sunday, said it sounded to her like doulas could do more for families than the more limited aspects of what she did in her role while working.

“They can take it to the next step and help families feel they’re not missing anything,” she said.

Nisha Bowman, an intensive care unit social worker at UPMC Presbyterian with a pronounced interest in death and dying issues, attended to learn more about the doula concept as someone who may focus her career on end-of-life issues in the future.

“It just make sense,” said Ms. Bowman, 34, of Perry South. “If we have it for births, why not have it for deaths? … To know that there’s people who are trying to help people do death better is very heartening, because there’s still a lot of stigma to it.”

Complete Article HERE!

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09/20/17

Why the Irish get death right

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We’ve lost our way with death, says Kevin Toolis – but the Irish wake, where the living, the bereaved and the dead remain bound together, shows us the way things could be done

Kevin Toolis … ‘My father’s dying, his wake, his willing sharing of his own death, would too be his last parental lesson to his children and his community. A gift.’

By

In the narrow room the old man lay close to death.

Two days before, he had ceased to speak, lapsed into unconsciousness, and the final vigil had begun. The ravages of cancer had eaten into the flesh leaving only a skeletal husk. The heart beat on and the lungs drew breath but it was impossible to tell if he remained aware.

In the bare whitewashed room, no bigger than a prison cell, 10 watchers – the mná caointe – the wailing women, were calling out, keening, sharing the last moments of the life, and the death, of this man. My father. Sonny.

“Holy Mary, mother of God, pray for us now, and at the hour of our death.”

In the tight, enclosed space, the sound of this chorus of voices boomed off the walls, the ceiling, louder and louder, reverberating, verse after verse, on and on, cradling Sonny into death.

This death so open, so different from the denial of the Anglo-Saxon world would, too, be Sonny’s last parental lesson.

How to die.

If you have never been to an Irish wake, or only seen the movie version, you probably think a wake is just another Irish piss up, a few pints around the corpse and an open coffin. But you would be wrong.

Kevin’s father, Sonny Toolis.

In the Anglo-Saxon world, death is a whisper. Instinctively we feel we should dim the lights, lower our voices and draw the screens. We want to give the dead, dying and the grieving room. We say we do so because we don’t want to intrude. And that is true but not for these reasons.

We don’t want to intrude because we don’t want to look at the mirror of our own death. We have lost our way with death.

On the Irish island where my family have lived in the same village for the last 200 years, and in much of the rest of Ireland, death still speaks with a louder voice. Along with the weather reports of incoming Atlantic storms, the local Mayo country and western radio station runs a thrice daily deaths announcement enumerating the deaths and the funeral arrangements of the 10 or so daily freshly departed. There is even a phone line, 95c a minute, just so you can check up on those corpses you might have missed.

There should be nothing strange about this. In the absence of war and catastrophe, humans across the planet die at an annual rate of 1%; 200,000 dead people a day, 73m dead people a year. An even spread. It’s happening all around you even as you read this article; the block opposite, the neighbouring street and your local hospital.

If the local radio in London or New York did the same as that Mayo station, the announcer would have to read out the names of 230 dead strangers, three times a day, just to keep up.

Of course, if you live in a city such as London, where 85,000 people die each year, you would never know of these things. Such a very public naming of the dead, an annunciation of our universal mortality, would be an act of revelation in the Anglo-Saxon world. And likely deemed an outrage against “public decency” – which would almost certainly lead to advertising boycotts and protests.

More shocking still then would be the discovery of another country where the dying, like Sonny, the living, the bereaved and the dead still openly share the world and remain bound together in the Irish wake.

And death, in its very ordinariness, is no stranger.

My father, Sonny Toolis, was too a very ordinary man. He was never rich or powerful or important. He never held public office and his name never appeared in the newspapers. The world never paid him much attention and Sonny also knew the world never would. He was born poor in a village on an island, devoid of electricity, mains water and tarred roads, in much the same way the poor have been born in such places for most of human history.

Sonny never got the chance to get much of an education and worked most of his life as a foreman on building sites earning the money to pay for the university education of his seven children.

Sonny was good with his hands though. Useful to have around if things went wrong with the electric, the drains, or you needed the furniture moved. He had his limitations; he did not like strange peppery foods, he wasn’t very comfortable wearing suits, and he was terrible at giving speeches at weddings.

He did have a great singing voice, played the bagpipes and the accordion, and taught his children to sing by what he called the air – by listening along. In the 1960s, he bought a 35mm German camera, took pictures, and ran the prints off in his own darkroom. He even shot film on Super 8. But it was never more than a hobby. Like a lot of us, Sonny had some talents he would never fully realise in life.

But Sonny really did have one advantage over most of us. He knew how to die. And he knew how to do that because his island mothers and fathers, and all the generations before, had shared their deaths in the Irish wake and showed him how to die too.

His dying, his wake, his willing sharing of his own death, would too be his last parental lesson to his children and his community. A gift.

The wake is among the oldest rites of humanity first cited in the great Homeric war poem the Iliad and commonly practised across Europe until the last 200 years. The final verses of the Iliad, the display of the Trojan prince Hector’s corpse, the wailing women, the feasting and the funeral games, are devoted to his wake. And such rituals would be easily recognisable to any wake-goer on the island today.

For our ancestors, a wake, with its weight of obligations between the living and the bodies of the dead, and the dead and living, was a pathway to restore natural order to the world, heal our mortal wound, and communally overcome the death of any one individual. An act, in our current, thin psychological jargon, of closure.

Through urbanisation, industrialisation and the medicalisation of death, the wake died away in most of the western world and death itself came to be silenced by what might be called the Western Death Machine. But out in the west, among the Celts, this ancient form of death sharing lives on.

When he was 70, my father was diagnosed with pancreatic cancer – still among the most fatal cancers among western men. Sonny never flinched. He did not want to die but when he knew he had no choice, he never wasted the time he had left. He wasn’t angry or embittered but something wiser – he accepted his death. He got on with his dying the same way as he had got on living, day by day, pressing forward, husbanding his energy.

Sonny’s time had come but neither he nor his community denied his impending death. Unlike the shunning of the Anglo-Saxon world, his house filled with visitors who came to see him because he was dying.

Dying is an exhausting, self-centring act. Sonny, always a powerful physically imposing man, rapidly shed powers like a snake shedding skin. His world shrank to two rooms and Sonny knew he would never see the end of that fateful summer.

Sonny’s fatherhood was ending and my own beginning. Our last words together on his deathbed were very ordinary, bland. “I’ll let you go, son,” he said as I left to return to the city. When I returned, he had lapsed into a coma and could no longer speak.

But our parting was fitting. There was no more mystery to share. No revelation to be uncovered. Our identities as father and son had already been written out in the deeds of our life together; Sonny changing my nappy, not losing his temper in my teenage contrariness, encouraging me in my education and the summers we shared on building sites when I worked alongside him while still a student. And in all the countless ways he showed me in his craft how to be a man and father myself.

Sonny died just before dawn on the longest day of the year at home in the village of ancestors. No one called for help, or the “authorities”. He was already home with us. His body was washed and prepared for his coffin by his daughter and sister-in-law. He was laid out in his own front sitting room in an open coffin as his grandchildren, three, five and nine, played at the coffin’s feet.

His community, his relatives, some strangers even, came in great numbers to pray at his side, feast, talk, gossip about sheep prices or the stock market, and openly mark his death in countless handshakes and “Sorry for your trouble” utterances.

We waked together through the night with Sonny’s corpse to guard the passage out for his departing soul and man the Gate of Chaos against Hades’ invading horde lest the supernatural world sought to invade the living world. Just as the Trojans too before us had watched over Hector’s corpse. A perpetual quorum; dying in each other’s lives and living on in each other’s deaths at every wake ever since.

It was blessing of a kind, an act of grace. We give ourselves, our mortal presence, in such death sharings, or we give nothing at all; all the rest of our powers, wealth, position, status, are useless.

To be truly human is to bear the burden of our own mortality and to strive, in grace, to help others carry theirs; sometimes lightly, sometimes courageously. In communally accepting death into our lives through the Irish wake we are all able to relearn the first and oldest lessons of humanity. How to be brave in irreversible sorrow. How to reach out to the dying, the dead and the bereaved. How to go on living no matter how great the rupture or loss. How to face your own.

And how, like Sonny, to teach your children to face their death too.

Complete Article HERE!

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09/14/17

Presentation talks mortality, being prepared

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By Briana Alzola

The death educator will be giving informational and interactive talks from 6 to 8 p.m. Tuesday, Sept. 19, and 1 to 3 p.m. Wednesday, Sept. 27. Both talks will be the same so interested people should attend one or the other, Wagner said.

Wagner, a new Anacortes resident, has been working on death and bereavement counseling for years. In the 1970s, he was living in San Francisco and saw many of his friends sick and dying from AIDS.

Wagner, who was an ordained Catholic minister, looked into his background in theology and therapy and tried to find a way to help people who were dying or losing loved ones.

The people he was sitting with were dying in a matter of weeks, and he felt like he was just moving from one death scene to the next.

People were having to just figure out death on their own, he said. So he decided to set out to help people understand death as a part of life, rather than a punishment or something to be feared.

People who are aware of their mortality are able to live better lives, Wagner said. Talking about it in a group format also means people don’t have to deal with it alone.

Wagner started a support group as part of a 10-week program. People of all different backgrounds came in to talk and learn, he said. The program featured guest speakers to talk about spiritual concerns, legal concerns, estate planning and more.

The talks he’s offering in Anacortes are a condensed version of that program, which he also outlines in his book “The Amateur’s Guide to Death and Dying.”

His program ran for several years but he put it into book form to reach more people.

The book is set up as a support group, with fictional people talking about issues. All should be able to relate to what is being said, Wagner said.

“There is a place for them to fill in their own thoughts,” he said.

Death is not something people should be told how to feel about, he said. He just wants to open the discussion and give people the tools they need to be ready.

“Death is inevitable,” he said. “We have the opportunity to prepare.”

The talk at the center is aimed at elderly people and their family members. It will be fun, with a lot of humor involved, Wagner said.

The talk is a $15 suggested donation.

Complete Article HERE!

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09/11/17

Doctors want to give their cancer patients every chance. But are they pushing off hard talks too long?

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Biff Flanagan, an esophogeal cancer patient, stands with his wife Patricia at their home in Sa Diego, CA on Wednesday, August 30, 2017. Mr.Flanagan received an experimental immuotherapy cancer treatment for his cancer.

By Bob Tedeschi

A new generation of immune-boosting therapies has been hailed as nothing short of revolutionary, shrinking tumors and extending lives. When late-stage cancer patients run out of other options, some doctors are increasingly nudging them to give immunotherapy a try.

But that advice is now coming with unintended consequences. Doctors who counsel immunotherapy, experts say, are postponing conversations about palliative care and end-of-life wishes with their patients — sometimes, until it’s too late.

“In the oncology community, there’s this concept of ‘no one should die without a dose of immunotherapy,’” said Dr. Eric Roeland, an oncologist and palliative care specialist at University of California, San Diego. “And it’s almost in lieu of having discussions about advance-care planning, so they’re kicking the can down the street.”

Palliative care and oncology teams have long been wary of each another. For many oncologists, palliative care teams are the specialists to call in only when curative treatments have been exhausted. For many palliative care specialists, oncologists are the doctors who prescribe treatments without regard to quality-of-life considerations.

But the new collision between immunotherapy and palliative care experts comes at an inopportune moment for health care providers, who have in recent years promoted palliative care as a way to increase patient satisfaction while reducing costs associated with hospitalizations and emergency room visits.

Dr. Cardinale Smith, an oncologist and palliative care specialist at Mount Sinai Hospital in New York, said she has seen a handful of patients who tried immunotherapy treatments after failing chemotherapy, and who were later admitted to the hospital in poor condition. Almost all of them died there, without having been asked about where, and under what conditions, they might prefer to die.

“These conversations are not occurring because of the hope that this will be the miracle treatment,” Smith said. “Unfortunately, on the part of the oncologist, treatments like immunotherapy have become our new Hail Mary.”

Immunotherapies work for only around 15 to 20 percent of cancer patients who receive them.

They have been approved by the Food and Drug Administration for Hodgkin lymphoma and certain cancers of the lung, skin, blood, kidney, bladder, and head and neck — but not for common cancers like prostates and most cancers of the colon and breast. A new type of immunotherapy, CAR-T, was approved earlier this week for leukemia.

But even for those cancers, oncologists and patients sometimes refuse to acknowledge clear signs that immunotherapies are failing, said Dr. Sandip Patel, a cancer specialist and immunotherapy researcher at the University of California, San Diego.

Patel said he now engages home-based palliative care specialists, who can provide supportive care while a patient’s health is relatively stable. “Then, at least when they transition to hospice, it’s not as much of a free fall out of the traditional health system, and if they’re one of the patients who respond to the therapy, great.”

He lamented the fact that patients who fail immunotherapy treatments spend more time in hospitals than with their families at home. “The flip side is, if I had a cancer with a 15 percent response rate, and if the benefit might be longer-term, I’d try it,” he said. “Who wouldn’t buy a ticket to a lottery of that importance?”

But not all patients have a clear idea of what that lottery ticket might cost them. Carrie Clemons’s father, Billy Clemons, who is 68 and is a former Texas state representative, last year stopped responding to chemotherapy for renal cell cancer that first struck him in 2002. His doctors recommended the immunotherapy Opdivo, which had recently been approved for his cancer.

At the time, he was symptom-free from his cancer, though scans showed it had spread to his lungs and some lymph nodes.

Two infusions of the drug, Clemons said, were followed by “eight months of hell,” during which her father became incontinent and had to use a wheelchair, lost his eyesight and most of his hearing and speech, and endured multiple weeks of intubation and care in the ICU. When his heart stopped beating, he needed to be resuscitated.

While immunotherapies trigger debilitating side effects much less frequently than chemotherapy, they can spur potentially life-threatening conditions, depending on the cancer type and the treatment approach. Fewer than 5 percent of patients overall face serious side effects, for instance, but more than one-third of melanoma patients who receive a combination of immunotherapy drugs can experience such conditions. The upside: Half of those melanoma patients will see their cancer shrink for at least two years.

Clemons’s doctors at Houston’s MD Anderson attributed the reaction to a runaway immune system that essentially attacked his central nervous system. To reverse it, he needed weeks of therapy to replace his plasma with that of donors, to clear away his blood’s overly active antibodies.

He slowly improved, though, to the point where only some slight vision impairment remains, and doctors recently declared his cancer in remission.

Although the family is thrilled at the outcome, Clemons said, they had little idea when they began that such side effects were possible, and doctors never engaged the palliative care team to either discuss side effects or help manage them.

She wouldn’t have known to ask about such care. “I always just equated palliative care with hospice,” she said.

Hospitals overall have made some headway in integrating oncology and palliative care specialists, with more oncologists referring patients to palliative specialists to help them ease side effects of treatments and achieve quality-of-life goals.But Roeland, the doctor at the University of California, and others say the integration is less smooth when it comes to cutting-edge cancer treatments.

Palliative care teams have not been able to keep abreast of the breakneck pace of cancer treatments, so they may not be offering up-to-date counsel to patients who ask about possibly life-changing therapies.

Meanwhile, most of the growth in palliative care medicine has happened among clinicians who work in hospitals, where they generally see only those who have done poorly on immunotherapies, for instance.

“They’re not seeing the super-responders,” Roeland said. “So their first reaction usually is, ‘Why would you do that?’”

Biff Flanagan, an esophogeal cancer patient, on a walk with his wife Patricia at their home in San Diego, CA on Wednesday, August 30, 2017. Mr.Flanagan received an experimental immuotherapy cancer treatment for his cancer.

Roeland understands more than most the seductive qualities of an eleventh-hour immunotherapy gambit. He had given up hope of curing Bernard “Biff” Flanagan, 78, of his esophageal cancer in late 2015, and referred Flanagan to hospice care to help him manage his extreme weight loss, fatigue, and the emotional distress he felt from not being able to swallow.

But Flanagan, who speaks with the gruff, seen-it-all humor one might expect from a career FBI agent in LA, wanted to keep seeking a cure.

Roeland said he knew that many hundreds of clinical trials were testing the therapies on other cancers, so he did some digging. A paper from a recent cancer conference showed that some people with squamous cell esophageal cancer responded to immunotherapy. He could arrange to get the drug through the Bristol Myers Squibb, for free.

He presented the idea to Flanagan and his wife, Patricia, with the caveats that it might not work, and could come with possibly significant side effects.

Flanagan jumped at the chance. Patricia, a former professional photographer, was less enthused.

“I ran into her later in the coffee shop,” Roeland said. “She looked at me like. ‘What the hell are we doing here? He doesn’t have a good quality of life.’ I’m feeling guilty now.”

Roughly six weeks into the treatment, Flanagan’s energy was returning, and he found himself at the fridge. “I grabbed a glass of OJ, knocked it down, swallowed it no problem,” he said. “And it was like a miracle. I had another one.”

Now Flanagan has no symptoms, and he experienced only the briefest side effect: a skin rash that abated with ointment. Patricia recently helped him dispose of the morphine and other medications the hospice team had given them.

“If he’d died in the hospital, I would’ve felt terrible,” she said. “If I were in his place at that point, I’d have tried to arrange to die at home at my own choosing, but Biff just didn’t have as strong feelings about that as I had.

“I had little hope that he was going to recover, but it’s just been amazing. He really is living the life he’s always lived.”

Roeland said that for the experience “is so immensely rewarding that it drives an oncology practice. It can be 1 in 100 that happens like that, and you say, well, is it worth it?”

Complete Article HERE!

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08/19/17

To Treat or Not to Treat: What Would Your Loved Ones Want at the End of Life?

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Ensuring that the care you get reflects your wishes and values

When someone you love is hospitalized with a grave illness or injury, you may face decisions about their care.

Cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings, surgery, chemotherapy or other interventions may add weeks, months or years to their life.

If your loved one has an advance directive (living will), it will spell out which interventions they want and don’t want. If they don’t have one and can’t speak for themselves, how should you proceed?

To help families learn to make good choices in this situation, Silvia Perez Protto, MD, Director of our Center for End of Life Care, answers key questions below. 

Q: What’s the first thing families should consider?

A: First, determine whether the patient is capable of making a decision about treatment. If so, your best option is to explore their wishes and values:

  • What are they expecting and hoping from treatment?
  • What are the trade-offs of treating versus not treating?
  • What risks are acceptable and not acceptable to them?
  • Which do they value more: quality of life or quantity of days?

Depending on their age, situation and views, answers will vary.

One paralyzed patient may be happy sitting with family and watching TV. Another may not.

One patient may want doctors to extend her life despite pain, nausea, or loss of mobility to see her son graduate from college. Another may be unwilling to experience serious side effects from a treatment that isn’t 100 percent effective.

We want to honor the patient’s wishes. When patients can’t communicate and have no advance directive, we look to families for guidance.   

Q: What’s the best way to start the conversation?

A: I encourage families to talk to loved ones about end-of-life wishes and values before they get sick or develop a serious condition. You won’t go wrong trying to explore someone’s wishes and values.

When I asked my own mother what she wanted at the end of her life, I learned she wanted to be around her five children, to be able to communicate with us and to be independent. This led me to understand that if she became terminally ill and couldn’t recognize us, she wouldn’t want to live like that.

Some people wouldn’t mind being on a feeding tube or a ventilator, unaware of their environment. Others wouldn’t want to live in a vegetative state.

These questions are tough and emotionally difficult to ask mom or dad. Even I got stuck talking to my mom. But we can always ask for help. A spiritual care advisor or palliative care doctor at your hospital can facilitate these discussions.

(And remember to tell loved ones about your wishes and values, too.)

Q: Do larger issues get in the way of these discussions?

A: I think not talking about death is cultural. It’s how we see life, it’s our spiritual background, it’s our own fear of dying.

I’ve heard patients say, “I feel like I’m dying, but my kids don’t want to talk about it.” This isolates them at the end of life. Pain and isolation or abandonment are our main fears when we’re dying.

But the more we talk, the less fear we’ll have. Everybody’s going to die. Avoiding the topic won’t decrease the chances of dying. As a society, we need to normalize death. Being born, growing up, having kids, dying – these are all part of the life cycle.

Q: What questions should you ask about end-of-life care?

A: If you’re worried how an illness may impact the end of your life, talk to your family doctor, primary care doctor or specialist. Ask, “What are the side effects, risks and benefits of the treatment you’ve recommended?” Once you have that information, see how it lines up with your wishes and values.

If you want your doctor to keep trying to treat the disease, we can provide palliative care along with the treatment, controlling your symptoms and minimizing your pain. If you choose to end treatment, it doesn’t mean we’re giving up. We’ll still provide palliative care right up until the end.

Our goal in the ICU is always to get patients better and back to a functional life at home. But that’s not always possible. We can aim either to extend life or to offer the best quality of life in the time the patient has left.

These conversations and advance directives show us how to proceed and help us allow patients to die with dignity.

Q: Are there proven benefits to end-of-life planning?

A: Yes. Studies show that when advance care planning is done, the family’s experience and the patient’s experience are better. In the United States, autonomy is very important. Advance directives help you maintain your autonomy at the end of life.

Healthcare providers are encouraged to obtain advance directives and document patient’s wishes in their chart for all caregivers to see.

Q: Any final word for families?

A: I encourage families to see death as a natural act and to understand the value of a natural death. We can do many things to extend life, but sometimes the price we pay is having no quality of life.

Complete Article HERE!

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08/18/17

A Quaker Approach to Living with Dying

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By Katherine Jaramillo 

I’ve been present with hundreds of people as they’ve died, hundreds more who were already dead by the time I was paged, and hundreds more who were in their dying process. I’ve accompanied spouses, parents, children, friends and family members as they’ve experienced the horror and sorrow of grief. For the past 20 years, I’ve been a chaplain, mostly in hospitals, a few with hospice. In doing this work, I’ve crossed death’s path more often than I can count as I’ve zigzagged my way through the hospital corridors and in the homes of folks experiencing the last days, weeks, months of life. Those of us on the interdisciplinary healthcare team struggle, as best we can, to provide our dying patients with a “good death,” however they and their families define such. There’s a saying in healthcare, “People die as they have lived.” Sometimes that is not the case, but, more often than not, that’s the way it goes.

Often, Quakerism is defined as a way of life. Some questions that I have carried for years in the ministry of chaplaincy include the following:

  • What does our Quaker faith and spirituality offer us as we face decline, diminishment, and death?
  • What can we say, as Quakers, with regard to dying and death as a personal and spiritual experience?
  • Is there a Quaker way of dying? How do we, as Quakers, do this?

My formative experience with regard to the Quaker way of dying was by accompanying a Friend through her decline and death. Her final illness, dying process, and death were Quaker community and meeting experiences. Her experience wasn’t a private or family-only affair. When she couldn’t come to meeting, small groups of Friends were dispatched to her home, hospital, or nursing facility to have meeting for worship with her. Friends from meeting stayed with her overnight in the hospital when she had to be on the breathing machine and was so uncomfortable and scared. She had a committee of trusted Friends who arranged for her practical needs when she was still able to live independently, including staying with her 24/7 when just home from the hospital and at times of extreme debility. These Friends helped with discernment regarding transition from independent living to a skilled nursing facility. In what turned out to be her final hospitalization, these Friends helped her discern her choice to decline heroic life-sustaining treatment and allow herself a natural death. Friends reflected with her about her desire for integrity and living in alignment with the testimonies, her beliefs about an afterlife. She was afforded the opportunity, though her Quaker way of living, to proceed to a Quaker way of dying. One First Day, as we knew death was approaching, our meeting of about 80 Friends decided to meet in a hospital conference room for worship. About halfway into the worship hour, a Friend came downstairs to announce our Friend’s death. It was a gathered meeting. Our Friend died the way she had lived.

Last year, desiring conversation on these questions, I facilitated an interest group I called “The Quaker Art of Dying” at the Pacific Northwest Quaker Women’s Theology Conference. The conference brings women together from the divergent Friends traditions in the Pacific Northwest, primarily from Canadian, North Pacific, and Northwest Yearly Meetings, as well as other independent meetings and churches, to articulate our faith and to learn from each other. The group was well attended and diverse. I presented three queries to the group for discussion. We broke into small groups each taking one of the queries, then reconvened into the large group to get the bigger picture.

What is a Quaker approach to declining health, dying, and death?

Friends reported their understanding that all life is sacred and Spirit informs all life. A Quaker approach would be a mindful, conscious, and prepared approach, with an excitement—or at least a willingness—to enter the mystery of death. It was agreed that a Quaker approach would involve less denial that someone is dying or that death is imminent. There is a value for listening, hearing one another’s experiences, and entering new situations with curiosity, not offering answers. Especially for Liberal Friends, but for some Evangelical Friends as well, there was less focus on an afterlife. A Quaker approach would be a well-ordered approach, with orderly records, legal documents, and final letters and lists of wishes. Friends agreed that cremation was customary and in alignment with Quaker values. The writing of a memorial minute was another Quaker tradition to document the passing of a Quaker life. As one Friend stated, “The Quaker approach is portable; you can take the heart of the Quaker way wherever it needs to go.”

How do our beliefs, testimonies, and values inform our approach to the end of life?

Friends agreed in their understandings that we have a direct connection with the Divine. Some Friends voiced a lack of fear about death. Others voiced fears about the decline of physical and cognitive abilities and the actual process of dying, such as the possibility of pain, loss of competence, being a curmudgeon, or depleting family resources. One Friend likened the burdens of dying to birthing: “Both are hard work.” Friends agreed that upholding the dying person in community benefits the community as well as dying person. Friends voiced an intention to allow support and presence of others as we approach the end of life, as well as taking all the alone time we need.

How can we prepare for death? Our own and that of our loved ones? A list emerged.

We need to:

  • Pray.
  • Think about what we want.
  • Talk about what we want, even though it is difficult, especially with our children.
  • Talk about what others want.
  • Talk with our families about our wishes.
  • Pray some more.
  • Deal with unfinished business—either finishing it or leaving it unfinished, but dealing with it intentionally.
  • Educate ourselves about health decline and the dying process by reading books like Atul Gawande’s Being Mortal.
  • Talk with our spouses or significant others, about things we’ll need to know if they can’t tell us themselves for whatever reason.
  • Prepare for the process:
    • Who do we want involved? Who do we not want involved? Do we want a care committee or not?
    • How do we want our remains disposed? Do we prefer cremation or burial? If we want to be cremated, do we want our remains to be scattered, interred, or buried?
    • What do we want for a memorial or funeral?
    • Do we want an obituary; a eulogy? What would we want said in our memorial minute?
  • We need to help meetings and churches be prepared for the decline, debility and deaths of their members and attenders.
  • Keep praying.

This conversation continues. In a recent meeting of our Quaker women’s discussion group, I facilitated a robust discussion about a Quaker approach to end-of-life issues and posed similar queries to the group. Evangelical Friends spoke of the “continuum of life” that transcends death, the need for “being right with God,” and the peace that “being with Jesus” will bring. Liberal Friends spoke of “entering the mystery” and “going into the Light.” There seemed to be agreement and assurance that “all will be well” at the end of physical life. Some women focused on the need to enter this time of life with their “affairs in order.” Other women spoke of their experiences accompanying a dying person in their meeting or church or in their own families. All seemed to enjoy the discussion of “things we don’t usually get to talk about” and voiced an intention to encourage further discussion in our churches and meetings. Later this month, I will attend my own meeting’s retreat where the topic will be “Spirituality As We Age.” No doubt, we will be continuing the discussion of how we Quakers intend to die as we have lived.

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