How Dying Taught Me to Live

By Brad Dell 

His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. They were dull … dead.

I loathed myself for letting my first cat be put to sleep without me by her side. I swore I’d be there for my second when he passed less than a year later. I swore I’d look him in the eye, even if it meant nothing to him. And so I did.

The odd thing was that he wasn’t afraid. He was calm. He’d spent a good life of hunting, cuddling, and lounging. He knew his place in nature’s cycle. I didn’t understand that. Not then.

But my time came.

Sepsis destroyed me. As my soul ripped loose from my bones, I gasped to my girlfriend that I loved her but I would soon need to die. Then I pissed the bed. I realized that dying isn’t romantic like in the movies. I stank from rolling around in a soiled, sweaty bed, and my voice was hoarse from begging for an end.

While death isn’t romantic, it can be peaceful. In my time, I’ve known many who have passed — they’re either ready or they’re not. I wasn’t yet ready. I was ugly and bitter in my death, outraged by the unfairness of this world.

Somehow, I survived.

The paradox of death is that it teaches you how to live. The tragedy of death is not everyone gets a chance to apply what they’ve learned.

I woke up in an unfamiliar world. All details seemed illuminated and emotions felt overwhelmingly potent. I cried a lot more, hugged a lot more, prayed a lot more, loved a lot more.

Former priorities fell away; ambition, money, and comfort lost their gleam. Each day during recovery, I composed an obituary in my head: “Boy dies of cystic fibrosis. He had caustic humor, good grades, and a decent savings account.” I craved depth and vowed to thrive with passion and weave a legacy of compassion.

Did my old friend know I’m sorry for calling him fat in fifth grade? Did my sister know I look up to her? Did my parents know I regret every single time I lashed out at them? Did everyone know that I mostly only pretended to love, yet always yearned to learn its power?

I lay in my soiled bed and tried recalling instances in which I’d helped people out of love rather than for the potential of a self-serving debt. I sobbed at the realization that I’d lost myself long, long ago. In prayer, I begged for redemption, for help with becoming the Brad I was designed to be.

It’s been 47 months since that prayer. I’m nowhere close to perfect, but I’m far from who I was. Today, my joy comes from expressions of vulnerability, wide smiles and belly laughs, the bonds forged through struggle, the light in people’s eyes, the warmth of another body, the tears poured in prayers, the little acts of love and the big acts of love, the feet that tap along to music, the winding conversations over meals, the exhilaration of adventure, the richness of sharing nature and sunsets with strangers.

I am ready to die, when that time comes again, though I’d love to learn even more about life with a third pass. Death is liberating, driving me to be fully present and live intentionally for the things that truly matter.

Like my old cat, I know my place in nature’s cycle. Mine is to love and be loved in return. Maybe that seems sappy to those who haven’t yet died. But one day you’ll understand, too.

Complete Article HERE!

Do You Want to Die in an I.C.U.?

Pandemic Makes Question All Too Real

Cheryl Goldman of Valley Stream, N.Y., has emphysema and relies on supplemental oxygen. She told her son that if she contracted Covid-19 and needed a ventilator that she would refuse treatment.

Sobering statistics for older patients sharpen the need to draw up advanced directives for treatment and share them with their families.

By

Earlier this month, Cheryl Goldman, a retired high school teacher living on Long Island, called her son, Edo Banach, in Maryland. It seemed a routine chat until Ms. Goldman announced that if she became ill with Covid-19, she would decline a ventilator.

“I’m her health care proxy,” said Mr. Banach, who happens to be the president of the National Hospice and Palliative Care Organization. “Her perspective was, what’s the point? In all likelihood it’s not going to help, and she’d be taking a vent away from someone else.”

At 69, Ms. Goldman has emphysema and already relies on supplemental oxygen. She told me that she’d been following the news, including the grim statistics for older adults with chronic illnesses who require ventilators during extended stays in intensive care.

In such cases, “the number who leave the hospital is low, and it’s lower for someone with health problems like me,” she said. She also feared being separated from her family during a hospitalization and wanted, instead, to remain at home with hospice care. “It’s a pragmatic decision.”

Mr. Banach, leading the response of about a thousand hospices nationwide that are facing heightened demand and bracing for worse, appreciated her forthrightness. “It’s the kind of conversation everyone should be having with their loved ones,” he said.

In the best of times, it can be tough to get Americans to discuss and document their end-of-life wishes. Depending on the study, a third to two-thirds of adults haven’t drafted advance directives, the documents that outline which medical treatments they would accept or refuse and designate a decision maker to act on their behalf if they’re incapacitated.

“People think, I’ll deal with it in the future,” Mr. Banach said. But for thousands of older adults, the future may have arrived.

To date, there’s no clear evidence that older people are more apt to contract the new coronavirus, said Dr. Douglas White, a critical care specialist and the director of the Program on Ethics and Decision Making at the University of Pittsburgh School of Medicine.

“What we do know is that older individuals are more likely to experience very severe disease if they do become infected,” he said. “The data are sobering.”

That’s partly because most older adults have chronic conditions — heart or lung disease, diabetes, high blood pressure — known to intensify the virus’s effects. And they have less physiologic reserve — “less ability to rebound from an overwhelming illness,” Dr. White explained.

When seniors and their families engage in what’s called advance-care planning, they often focus on the D.N.R. question — whether patients would want to be resuscitated after cardiac arrest.

But because Covid-19 is a respiratory disease, the more pressing question will likely be whether a hospitalized patient who’s seriously ill will accept intubation and ventilation.

That initially involves a tube inserted down the throat, connected to a ventilator that pushes air into the lungs. When a patient has spent two weeks on a vent, doctors commonly perform a tracheostomy, creating a surgical opening in the windpipe that replaces the swallowed tube.

Long before the virus erupted, among people over 66 who spent 14 days in an I.C.U. on a ventilator, 40 percent died within a year of discharge. Now, “those numbers are too rosy for Covid,” Dr. White said, citing findings from Italy and Britain, where more than half of older patients on prolonged ventilation died.

A just-published JAMA article looked at coronavirus patients admitted to Northwell Health hospitals in and around New York City. Excluding those still hospitalized after the monthlong study, the mortality rate among patients over age 65 exceeded 26 percent, and almost all patients over 65 who needed mechanical ventilation during that period died.

That data can prompt frank exchanges. “If a patient is elderly and has significant medical issues, I’ll explain that a large proportion of people who become ill with Covid-19 and need a ventilator unfortunately will not survive,” said Dr. Kosha Thakore, the director of palliative care at Newton-Wellesley Hospital in Massachusetts.

Moreover, longevity is not the only priority, and sometimes not the primary one, for older people considering medical options. What will life look like if they do survive?

“After elderly people have been on a ventilator, they’ve often already developed physical debilitation, difficulty swallowing, bedsores,” Dr. Thakore explained. They frequently cycle in and out of hospitals with complications. Their deficits can be physical or cognitive or both, and are often permanent.

Even pre-Covid, after 14 days on a ventilator in an I.C.U., only about one in five older discharged patients went home. “The others end up in nursing homes,” Mr. Banach said. “Some may later go home, and some will die in the nursing home.”

Though older adults with Covid-19 may not require hospitalization or ventilation, the decisions they face if they do highlight the importance of reviewing advance directives.

A new study in JAMA Internal Medicine questioned 180 patients over age 60 with serious illnesses; most said they would trade a year of life if that meant they could avoid dying in an I.C.U. on life support.

But that kind of aggressive care is exactly what they might receive. “If you don’t let the system know your wishes, the system takes over,” Mr. Banach pointed out. Family members can feel lingering trauma if they’re forced to make life-or-death decisions for loved ones who never discussed what they wanted.

“Many older patients we’ve encountered with Covid-19 have opted not to undergo ventilation and an I.C.U.,” Dr. White said. “No one should impose that on a patient, though if there’s true scarcity, that may arise. But patients might choose it for themselves.”

If older people have paperwork stashed in a drawer or safe, now is the time to unearth it and see if their instructions still reflect their values. If so, scan the document and send it to family members and doctors, Mr. Banach advised.

But for those who never got around to drawing up advance directives, appointing a decision maker — and telling that person what’s acceptable and what’s not — is ultimately more crucial. In emergencies, doctors probably won’t flip through documents to learn patients’ wishes; they’ll ask family or friends.

Mr. Banach’s counsel: “Take out your phone and do a video selfie: ‘This is who I am. This is the date. This is what I want.’ Send it to your friends and relatives. That’s enough.”

Many hospitals and health systems have developed workarounds when documents require signatures or witnesses; some are also doing palliative-care visits via telemedicine.

Dr. Gregg VandeKieft, a palliative care specialist with Providence Health on the West Coast, recently spent half an hour on Zoom talking with a patient’s sons about her end-of-life care. Dr. VandeKieft and a nurse were in Olympia, Wash.; one son was in Alaska and two elsewhere in Washington. “It felt not all that different than if we’d been in the same room,” Dr. VandeKieft said.

The coronavirus pandemic may spur more such conversations. In Los Angeles recently, Brie Loskota and her husband contacted close family friends, a couple in their 70s, asking about their well-being, offering to FaceTime, and then inquired: “If you got sick, is there anything we should know?”

The older couple, one of whom has a neurodegenerative disease and has already experienced mechanical ventilation, responded that they both wanted to avoid hospitalization and to die at home.

“It was a relief to be told,” said Ms. Loskota. “It’s not less heartbreaking, but it lets us make a decision with them in mind. It led my husband and me to talk about it for ourselves.” They’re in their 40s and have not yet drafted advance directives.

Complete Article HERE!

Why You Should Request an Extra Layer of Support When Living with a Serious Illness

By Andrew Esch, MD

Did you know that most large hospitals in the U.S. have a specialized medical team that uniquely cares for people living with serious illnesses? If you or a loved one has any type of cancer, heart or kidney disease, dementia/Alzheimer’s disease, or any other serious illness, you should know about this extra layer of medical support. It’s called palliative care and focuses on relieving symptoms and stress that so often come with these kinds of illnesses.

The goal of palliative care (pronounced pal-lee-uh-tiv) is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

Experts in Symptom Management, Care Coordination and More

Your palliative care team has expert training in managing symptoms and treatment side effects. Palliative care teams help patients and families in many ways, like avoiding unwanted and unnecessary trips to the hospital.

In addition, they will make sure you have the support you need to make informed decisions about your care. Having a serious illness often means having many doctors. Your palliative care team will make sure that you, your family, and your doctors are all on the same page. They will take the time to get to know you, help you plan goals for your treatment, and coordinate with your other doctors to match your treatment options to your goals.

Palliative Care is Available in Many Settings and Most Hospitals

As of 2019, more than 70% of hospitals (with 50 or more beds) in the U.S. have a palliative care team to help people living with a serious illness. And when people receive palliative care during hospital stays, they spend fewer days in the intensive care unit, have less pain, and are happier with the care that they receive. They may also be less likely to end up back in the hospital. Palliative care is also becoming more available outside of the hospital, in clinics and at home.

What This Means for You

If you or a family member are living with a serious illness, ask your doctor for a palliative care referral as early as possible. To find out which hospitals or clinics provide palliative care where you live, search this Palliative Care Provider Directory.

To learn more about palliative care, visit GetPalliativeCare.org, an online resource with clear, comprehensive palliative care information for people living with a serious illness. The site is provided by the Center to Advance Palliative Care (CAPC).

Complete Article HERE!

Love is not enough for end of life decisions…

This ground breaking video is challenging the commonly held perception that a loving relationship is all you need to ensure your end-of life wishes will be met.

The launch of the video is timed to stimulate interest and discussion in the lead up to the third annual, National Advance Care Planning Week, 23 – 27 March, an initiative led by Advance Care Planning Australia (ACPA), with funding from the Australian Government.

Produced by the award-winning Creativa video production agency, the Love is Not Enough video introduces two couples and one father and daughter, testing how well they know their loved one. While they were mostly able to correctly answer questions about preferred foods and holiday destinations, when it came to questions about end-of-life treatments they were less sure.

Interviewees were confronted with tough hypothetical treatment decisions for their loved ones including whether they would accept tube feeding following a stroke or extend their cancer treatment if it meant never leaving hospital.

This discrepancy is backed up by research[1]that shows that the people closest to us often don’t know our end-of-life wishes unless we expressly have the conversation or write our preferences in an Advance Care Directive.

“We created this video to shine a light on the fact that even with those closest to us, it is wrong to assume they would know our preferences for end-of-life care,” explains ACPA Program Director, Linda Nolte.

“While the questions posed in the video may seem confronting, these real-life scenarios play out every day in hospitals across Australia. It’s a terrible burden for families to bear having to blindly make life and death decisions, without knowing their loved one’s preferences. A simple discussion today can save a lot of heartache tomorrow.

“Despite legislative and policy support for advance care planning across Australia, public understanding and uptake remains low. People need to know that a loving relationship is no substitute for advance care planning. The person closest to you may not be the best choice to make decisions for you if you become too unwell to speak for yourself.

“With National Advance Care Planning Week coming up, it’s an opportunity for all of us to consider our future medical care, whether it’s attending an event or having a chat with loved ones. I urge all Australians to join us and find out more,” says Ms Nolte.

Study suggests overtreatment in end-of-life care despite POLST

Patients with treatment-limiting Physician Orders for Life-Sustaining Treatment (POLST) are less likely to be admitted to the intensive care unit (ICU) but may not always receive treatment that is consistent with their wishes, according to a study published online Feb. 16 in the Journal of the American Medical Association to coincide with the Society of Critical Care Medicine annual Critical Care Congress, held from Feb. 16 to 19 in Orlando, Florida.

Robert Y. Lee, M.D., from the Cambia Palliative Care Center of Excellence at the University of Washington in Seattle, and colleagues investigated the association between POLST orders for and ICU admission for patients receiving end-of-life care. The included patients with who had POLSTs, died between 2010 and 2017, and were hospitalized within the last six months of life.

The researchers found that of 1,818 decedents, 401 (22 percent) had POLST orders requesting comfort measures only, 761 (42 percent) requested limited additional interventions, and 656 (36 percent) requested full treatment. Patients with comfort-only and limited intervention orders were less likely to be admitted to the ICU; however, 38 percent of patients with comfort-only and limited intervention orders received POLST-discordant care. Patients with cancer were less likely to receive POLST-discordant care, while patients admitted for traumatic injury were more likely to receive POLST-discordant care.

“Lee et al have provided important new information about the relationship between POLSTs and overtreatment of patients at the end of life,” write the authors of an accompanying editorial. “These insights will assist clinicians in developing strategies to help ensure that hospitalized near the end of life receive only those treatments that are both desired and beneficial.”

Complete Article HERE!

When a doctor and patient disagree about care at the end of life

By Ravi Parikh

Sometimes, doctors and patients disagree about end-of-life care. I know, because it happened with me.

Not long ago, a frail-looking elderly patient appeared at my cardiac health clinic with a file full of hospitalizations stemming from a heart attack years before. He’d had three coronary stents put in, had had heart bypass surgery and was unable to walk for more than a block due to chest pain. I saw that a previous doctor had written “DNR” — do not resuscitate — in his chart, so I asked him to confirm his wishes.

No, he said, to my surprise. He actually wanted to be a “full code” — meaning that chest compressions, shocks and intubation were to be used if necessary to keep him alive.

I was taken aback. Someone had presumably told him that he would probably not survive a cardiac arrest even with cardiopulmonary resuscitation. (Only 1 out of 7 patients older than 80 do; this man was close to 90.)

“I don’t want anyone giving up on me,” he said. No matter how much I explained that CPR would probably only cause him to suffer longer without adding to his life, he remained adamant. He left my office visit with a yellow “full code” indicator in his chart instead of the red “DNR” one.

When I walked home that night, I couldn’t help thinking how badly our conversation had gone. I had discussed end-of-life planning with many patients, and usually we’d been able to come to decisions that made sense both medically and to the patient. But not this time.

Maybe I hadn’t explained the facts well enough; maybe there was a language barrier; or maybe he just didn’t trust me.

Medicare recently put in place new rules that will allow doctors to be reimbursed for discussing end-of-life preferences with patients.

Originally derailed by the “death panel” accusations of 2010, the measure has been hailed as a major victory toward a better, more transparent system of end-of-life care. Patrick Conway, the chief medical officer for the Centers for Medicare and Medicaid Services, remarked that such advance-care planning discussions were important to promote “patient- and family-centered care.”

But sometimes these discussions are anything but patient-centered. That’s because what the doctor wants doesn’t always align with what the patient needs.

As a resident, I approach most end-of-life conversations with a narrow focus: Confirm a code status and get the name of an emergency contact person. “Do you want to be resuscitated if you lost your pulse?” “Do you want to have a breathing tube if you were unable to breathe on your own?” “Whom should we contact in case of an emergency?” I needed to document answers to those questions to finish my patient-chart note. With my pager ringing and admissions arriving, I usually didn’t have time for anything else.

The patients I speak to, however, want so much more out of their end-of-life conversations.

One of the most common questions I heard was “How long do I have?” Indeed, about half of patients desire some knowledge about prognosis when discussing the end of life. They also wanted to know whether their symptoms — pain and nausea, for example — would ever go away, and what options would allow them to be at home during their final days. One woman even asked whether someone could set up her deathbed along the same beach where she had grown up. I frequently can’t answer these questions.

Yet even these potentially frustrating conversations aren’t that common: While 8 in 10 people of all ages think it is important to talk to their doctor about their end-of-life wishes, fewer than 1 in 10 report actually having had these discussions. But there are two participants in those end-of-life conversations: patient and doctor. Unless each realizes what the other wants, both risk coming away from those conversations feeling uncomfortable or sensing that things had not gone well.

Before I saw my elderly heart patient for his next visit, I came across the website of the Conversation Project, a group dedicated to helping people discuss their wishes for end-of-life care. Led by health professionals, media, clergy and others, the Conversation Project has published a “Starter Kit” to help patients and health professionals prepare for end-of-life conversations. The guide first asks patients to fill in the blank: “What matters to me at the end of life is ______.” Subsequent steps are based on that answer.

More resources for advance-care planning exist. A nonprofit called ACP Decisions has created videos to help physicians explain emotionally charged end-of-life concepts such as CPR, hospice and feeding tubes. At my hospital, we have used simulated conversations with patient actors to help residents approach the end-of-life conversation.

So at my next meeting with my patient, rather than beginning the discussion around his code status, I asked what mattered most to him. Over the next five minutes, he explained how his great-granddaughter in Ethiopia had just been born. The family was flying to America next month, presumably to see my patient for the last time. Even if it meant receiving compressions or shocks, he wanted to make sure he was alive to see that baby. He remained a full code until our next visit, which was two months later, after his family had left. At this point, he decided to revert to DNR. We are discussing hospice care now.

I no longer think that my first discussion with that patient was a failure. But it opened my eyes to how little I’d been listening. End-of-life discussions are opportunities to learn more, to start a conversation that we as doctors have been missing out on for quite a while. Once we listen enough to learn, maybe those “goals of care” discussions will start focusing on the goals of the patient, not the doctor.

Complete Article HERE!

A Chaplain on How to Talk About the Right to Die and Death With Patients

By Diane Rehm

Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.

DIANE: How do you feel about California’s “right to die” law?

MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.

D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.

M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.

Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.

D: What kinds of questions did you get from staff? What kinds of issues did they raise?

M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.

That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.

D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?

M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.

D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?

M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.

We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.

D: Who makes the initial judgment that the patient has six months or less to live?

M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.

D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?

M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.

D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?

M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.

D: What is the best way to reach people? How do we get the conversation started even before we’re sick?

M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.

It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.

D: How do you open that discussion for the general public?

M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”

I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.

D: Have you decided what you want for yourself at the end?

M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?

D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?

M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.

Complete Article HERE!