Making dying meaningful with an end of life doula

By Julie McClure

My dad died nine years ago after he suffered a long, debilitating illness. It was an outcome we knew was inevitable when he was diagnosed 10 years prior, but that didn’t make it any less difficult to see him slowly lose all of the functions that are necessary for one to live a fruitful life. At the end, I spend two weeks at his bedside, in his home, alongside my family, and there were times where — despite the visits from the wonderful and dedicated hospice nurses, and despite knowing this was ahead of us — the emotional toll we experienced as we honored his directive to finish his life at home without invasive life saving measures was overwhelming.

I know I’m not alone here. That every day, people are dealing with the overwhelming feelings and decisions that accompany the death of a loved one. It’s something we will all experience at some point in our lives, yet it’s a topic we’d rather avoid, that we’d rather not think about or deal with until we absolutely have to.

A couple of months ago I listened to a podcast that examined our stigmas and stereotypes surrounding death, and I was introduced to the concept of a “death doula.” We are generally familiar with the concept of a doula at birth — someone who is not your doctor or midwife or nurse or partner or family member — but is there to provide physical and emotional support for the mother before, during, and after the birth. A death, or end of life doula, provides physical and emotional support for those who are dying, and their families, throughout the death process. It makes so much sense! Of course this needs to be a thing! And indeed it is, right here in our community. Not long after this initial introduction to the concept, I stumbled across the Instagram profile for Threshold End of Life Doula Services, a relatively new service started by Melanie Sheckels, a local hospice nurse.

Sheckels has been a nurse for almost eight years, many of those years with cardiac patients, and has been present for deaths not only professionally, but more recently in her personal life. Her mother passed away just over a year ago, and her nursing experience gave her insight into how to counsel and advocate for her mother throughout the process. “She and I had many in depth conversations about what quality of life meant to her, and she asked me to advocate for her if she was not able to do so for herself. She had an end stage lung disease, and it was very difficult for her to talk and breathe, so she asked the doctor to just ask me to make decisions for her. Those decisions really supported her comfort and her dignity, and it created a lot of peace and healing for us both. So when I look back at that experience, I can see so many ways that could’ve been a really traumatic experience, and I was able to make it a really good one relative to the situation.”

Not all dying people and their families have the benefit of a close friend or family member with a working knowledge of what the dying process looks like, so Sheckels felt that she could use her experience to provide such a service for those families in our community.

“To be perfectly honest, a lot of my experiences around the dying and their families during the end, professionally, have been rather traumatic. Hospital deaths aren’t often pretty. Obviously we do our best, but it’s a cold sterile environment, it’s unfamiliar, and almost nothing that’s happening is within the control of the person who is doing the dying. It’s hard to maintain comfort let alone anything meaningful, ceremonial. I really noticed that all of these experiences had given me this insight and skill for being able to be present for people in a way that really improved their experience.”

So, what does it look like to be an end of life doula? Sheckels emphasizes that it’s really different for every person, every family, but that it ranges from talking through those practical issues such as advanced directives and what different medical interventions look like, to being sort of a life coach. She tries to help each person identify their priorities, and look to those priorities to determine what quality of life looks like for them. Often people have unrealistic expectations of the medical industry, that their loved one is just one intervention away, when this is often not the case. “There’s this idea that if we can then we should. This idea that death is something that has to be fought off. These things put a lot of pressure on the person that is dying.” Sometimes their experience becomes a “prolonged experience of life as a dying person.”

Sheckels helps the person create a care plan called The Best Last Three Months that addresses the emotional, spiritual, physical, and mental domains of life. “We identify what they really need to feel a sense of completion in that area. If you were to pass tomorrow, what would be the hardest thing for you to let go of? Sometimes those things are not really achievable, so we try to tease out what the significance is of that thing and find a meaningful and realistic way to do it.”

Legacy planning is also a part of the discussion. She helps people work through those big questions: “did I matter, how did I matter, and will the people that I’m leaving behind be okay without me?” For the family, she helps them work through planning vigil during active dying, and how she can help facilitate that. It may mean having a doula present for days, 24 hours at a time. Sheckels works with another end of life doula to help accommodate these more intense situations. She can also be a resource for lessening caregiver burnout by listening and allowing that person to express their emotions or staying with their loved one so they can get out and about. 

The concept of an end of life doula has really emerged with the past 10 years, and while there is not yet a certification for the practice, there are various organizations that offer training. Sheckels trained with the Conscious Dying Institute. She explained that many of these organizations are working to develop a certification exam and create an industry standard, and they are also connecting with the National Hospice and Palliative Care Organization to blend their work with hospice work, much like a birth doula works alongside midwives and doctors.

Beyond the personal care of families, it’s clear that Sheckels hopes to educate the community about the dying process. As she states, “A lot of people aren’t ready to approach death in a straightforward manner.” It goes back to fear and avoidance. “We take our fear and denial and put it in a closet and don’t look at it.” Through her work, she hopes to bring that fear and denial out into the open to work through it in an honest way.

I’ve often marveled at those who work with the dying and their grieving families, and I wonder about their well-being — their ability to care for themselves and separate from those intense emotions from time to time. Sheckels eloquently shares her strategy for self-care. “To walk people to and from the gate of mortality, I have to be able to navigate that terrain for myself. I have to regularly undertake personal work to maintain the ability to be present in the moment, to connect deeply with myself and others, and to embrace the impermanence of all living things, up to and including myself. That looks like meditation, journaling, therapy, connecting with nature, and completing my own end of life care planning.”

You can find out more about Threshold End of Life Doula Services through Facebook or Instagram, or reaching out at thresholddoula@gmail.com.

Complete Article HERE!

Listening To Older Patients Who Want To Stop Dialysis

By Judith Graham

Dr. Susan Wong sat down with an 84-year-old patient in the hospital, where he’d been admitted with a flare-up of a serious autoimmune condition and deteriorating kidney function.

The older man told her he wanted to go home; he’d had a good life and was ready for its end. He didn’t want aggressive care — including dialysis — having witnessed his wife and son die painfully in intensive care years ago.

Wong, an assistant professor of nephrology at the University of Washington, was prepared to follow the man’s wishes, but other physicians, eager to pursue tests and treatments, disagreed. For a week, the doctors argued about what to do. Finally, they discharged the patient, who died in hospice care a few weeks later.

Older adults with advanced kidney disease who want to forgo dialysis often encounter similar resistance from physicians, according to a new study in JAMA Internal Medicine by Wong and colleagues at the Veterans Affairs Puget Sound Health Care System in Seattle, where she’s an investigator.

The researchers documented doctors’ reactions by reviewing medical charts of 851 older patients with chronic kidney disease who refused dialysis at the VA health system from 2000 to 2011. In their notes, physicians frequently speculated the patients were incompetent, depressed, suicidal or irrational.

With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common.

Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition. “Still in denial about his kidney disease and his need for hemodialysis in the near future — repeat discussions with patient and wife regarding compliance,” one nephrologist wrote. Even when patients were firm about declining dialysis, doctors repeatedly questioned their decisions.

“Clinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,” Wong said. Another factor at play: Nephrologists aren’t trained to ask seriously ill patients what’s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, studies have found.

“We don’t really know how to help patients with serious illness make decisions that are right for them or what to do when they don’t really want dialysis,” said Dr. Jane Schell, an assistant professor of palliative care and nephrology at the University of Pittsburgh.

Conversations about the potential benefits and burdens of dialysis, as well as alternatives, are especially important for frail patients 75 and older who have two or more chronic conditions, such as diabetes and high blood pressure, and difficulty with daily activities such as bathing or walking — a group at risk of experiencing significant complications from dialysis but not achieving longer life.

Healthier older adults have better outcomes on dialysis — a valuable treatment for many people. “We shouldn’t limit access to dialysis based on age, but we should have meaningful conversations about goals of care and make it clear that dialysis is a choice and that patients have alternatives,” said Dr. Bjorg Thorsteinsdottir, an assistant professor of internal medicine and bioethics at the Mayo Clinic.

Options that should be discussed include comprehensive conservative care, which calls for preserving as much kidney function as possible, managing a patient’s health problems, dealing with symptoms such as nausea, swelling, itchiness, pain and breathing difficulties, and preparing for end-of-life care; peritoneal dialysis or hemodialysis at home; and palliative dialysis, a less intensive version of this treatment that keeps people alive for longer but isn’t meant to restore kidney function.

Comprehensive conservative care programs are few and far between (in New York City, Pittsburgh, Seattle, San Francisco and a few other locations), but efforts are underway to change that. With funding from the American Society of Nephrology, Schell and colleagues at the University of Pittsburgh have developed an online conservative care curriculum set to debut in March. Nineteen nephrology training programs for physicians are set to participate.

Also, the Pathways Project, funded by the Gordon and Betty Moore Foundation, is working to make palliative care (also known as supportive care) for patients with advanced kidney disease widely available. (KHN’s coverage of end-of-life and serious illness issues is also supported in part by the Gordon and Betty Moore Foundation.) Dr. Alvin Moss, co-investigator of the project and professor of medicine at West Virginia University School of Medicine, said the project hopes to sign up 10-15 dialysis centers this year.

Sometimes, patients choose a time-limited trial of dialysis with the understanding that they can change their minds down the road.

Cyndy Patton’s 86-year-old mother, Isabel, learned last spring she had advanced kidney disease after going to a Pittsburgh hospital, sickened by repeated bouts of vomiting. Physicians suggested she try dialysis for a few weeks and see if her kidneys might rejuvenate. (The older woman had survived open-heart surgery and a stroke and was living on her own after her husband’s death.)

After a week in the hospital and another week in a rehabilitation center, there was no change: Patton’s mother still needed dialysis. Five weeks later, she confessed to her daughter that the treatment was making her miserable. But giving it up felt like committing suicide, she told Patton — an unacceptable option.

A week later, Isabel had changed her mind. “This is not a life I care to lead, being hooked up to these machines,” she told Patton. “What am I doing this for?” The older woman had consulted with Schell at the University of Pittsburgh about palliative care and hospice care, and she chose hospice.

Dialysis ended and the family gathered at Isabel’s bedside. “She was all ready to die — but she didn’t, and is still living to this day,” Patton said.

It’s an example of how hard it can be to predict what will happen to any given patient with advanced kidney disease. What’s important for the patient to understand is that “it’s not always all or nothing — dialysis or death,” Thorsteinsdottir said.

“Patients have to be very assertive and tell their medical team: This is what I want and what I don’t want,” Moss said. For more information, he suggested people explore the websites of the Coalition for Supportive Care of Kidney Patients (he chairs that organization), the National Kidney Foundation and the American Association of Kidney Patients, and “really spend some time learning about your options.”

Complete Article HERE!

End-of-life doulas bring guidance and strength at a time of need

End of life doula Susan Capurso

By Erika Prafder

After her 52-year-old husband died of the flu in 2014, Susan Capurso from Long Island, New York was left feeling helpless, angry and unsupported.

“We weren’t prepared at all,” says Capurso, who had been married for 25 years. “We didn’t have hospice, as my husband’s illness was not a long-term one. At the end, there was no one standing next to me saying ‘this is what is happening now. He’s going to pass within hours and this is what to expect.’ I’m detail-oriented, I wanted to know.”

Interested in offering non-medical, holistic and emotional support to the dying and their families, Capurso began to research the work of an end-of-life doula. Traditionally, a doula is a layperson who aids a woman in childbirth and newborn aftercare alongside medical staff. In the same way, end-of-life doulas are supportive to hospice; they do not take the place of it.

To further her interest in this growing field, Capurso began volunteering for a hospice and enrolled in the certificate-bearing Doulagivers training school of New York City (DoulaGivers.com), a school started by Suzanne O’Brien, formerly a hospice and oncology nurse.

O’Brien was inspired when, on a trip to Zimbabwe in 2012, she saw how local people were trained to sit with a person who was dying and “guide” them through their journey. While the country lacks basic needs and medicinal care, “they did have neighbors sitting with a family member who is dying — holding that space for them,” says O’Brien. “The power of presence might be the most powerful medicine we have, but we’ve lost that in our health care system. We’re all in this together. We should support each other however we can.”

On O’Brien’s course, “training is individualized,” says Capurso. “Weekends are spent with [O’Brien] and everything else is done online through a series of live webinars and modules.”

The three-pronged curriculum covers end of life phases from diagnosis to stabilization, transition and disease process. Elder care assistance and advanced directive (when a patient determines their end of life wishes while they are still able to do so) is also covered.

“This covers the important papers you really need to button up, such as health care proxy, living will, do not resuscitate,” says Capurso.

Practical help is also part of a doula’s workload.

“We come into homes, prepping meals for the week, doing laundry and going through each room to ensure it’s safe,” says Capurso.

Beyond these basics, Capurso extends her healing work to include the creation of a legacy book with patients.

“It’s something we work on together. We go through your life, adding personal stories, photographs and memories,” says Capurso. “It’s not just something you’re leaving for family and friends, it really is therapeutic — bringing light, love and closure.”

Helping patients to compose letters to loved ones and assisting families with writing memorials and eulogies are also customary tasks.

Having your “funeral” before you die is another trend that doulas can help with.

“Why not have a memorial before you go?” says Capurso. “Let’s laugh, say our goodbyes and be happy. It doesn’t have to be scary. A celebration with the dying person there shapes the person’s life and offers closure.”

Carrying out a dying person’s wishes is also a top priority for Capurso.

“I can help find a way for the last days to meet a dying person’s desires. Maybe starting to contact family members to come in for a final visit, asking them to write a memory down on a card and placing it in to a basket, incorporating nice music, candles or aromatherapy,” says Capurso.

This line of work is especially well-suited for hospice volunteers who want to do deeper work, as well as healers, reiki practitioners, massage therapists and acupuncturists. It’s also beneficial to have a genuine interest in educating the community on the resources available for them.

“You don’t go looking for this career, it calls out to you,” she says.

The demand for such caregivers is overwhelming. By 2020, an estimated 117 million Americans will need some caregiver assistance.

“Doulas fit in to the personal companion model, which is a billion-dollar industry serving our elder population,” says Deanna Cochran, RN. Cochran is the founder and CEO of Quality of Life Care, LLC, in San Marcos, Texas, an end-of-life training and certification agency. She’s also the first chair of the End of Life Doula Council within the National Hospice and Palliative Care Organization.

“The dying have specific needs and fears that need addressing,” she says. “As we evolve, the field is ripe for training people to be skillful at this — it’s a movement that’s growing. There’s plenty of room for every single hospice in this country to have at least one part-time doula. Within the next 10 to 15 years, opportunities will also become prevalent at nursing homes and assisted living centers.”

Fortunately, training is more prevalent now.

“There are over 10 certification programs, ranging in price from $700 to $2,500,” says Cochran, who offers a fast-track, 16-week program. “You can learn the skills, but you need to do the work by volunteering through hospice, nursing homes, hospitals. There’s an art to it.”

Complete Article HERE!

How I Made Friends With Reality

With her signature wit and wisdom, Emily Levine meets her ultimate challenge as a comedian/philosopher: she makes dying funny. In this personal talk, she takes us on her journey to make friends with reality — and peace with death. Life is an enormous gift, Levine says: “You enrich it as best you can, and then you give it back.”


 

Atheist awed by humanity amid religious rituals of death

Even for an unwavering nonbeliever like myself, a couple of days last week were very close to a religious experience as we watched my wife’s mother, Ruth Aylward Pommer, 87, pass from this life into what she so fervently believed would be glory in the next.

Farm in winter.

by Rick Snedeker

Observing the initially distressful but finally serene end of a purposeful life robustly lived was both moving and humbling, a replaying of nature’s endless symphony of life and death far beyond any human capacity to halt or reverse it. Reality in perpetually unstoppable motion.

I come from a small family, but Ruth’s extended clan is relatively vast, so it was a beautiful and compelling thing to see the legions of daughters and sons, grand-kids and great-grandkids and great-greats, other relatives and friends filter into the room to hold vigil, voice rosary prayers, tell stories, and say their final good-byes.

It was particularly magnificent to see Ruth’s children closely arrayed around her bed, eyes red with anguished concern, stroking her hair, dabbing her brow, whispering soft encouragements into her ears, carefully watching her for signs of pain or distress so they could immediately do what was required to ease it. This is love expressed in its deepest, most primal, most authentic form.

Although I have spent long hours reading and writing about the unsubstantiality of supernatural ideas, as Ruth slipped quietly away I still realized once again what I already knew — that spiritual yearning is as universally human as rage against injustice. And it is powerful. So powerful.

When the kindly young priest from Ruth’s small farming community delivered the words of last rites in respectful, gentle tones, and anointed her forehead and palms with holy oil, it felt ancient, almost primordial. It felt natural to embrace any ritual, any hope that would make this not a sad end but a beginning of something profoundly better.

For many people, few things in life are as terrifying as its end, and the attendant possibility of immortal nothingness, or, worse, endless suffering. This is why most Christians, including, as Ruth was, Catholics, focus their lives on not displeasing God and improving their chances of being heartily welcomed by St. Peter in Paradise one blessed day.

I get it, especially after this past week, after seeing fervent faith up close in ways I rarely do, at a time of great angst and sadness over the passing of a woman much loved and honored in her lifetime. Even I mourn the end of her life in a personal way. Aside from the courtesy, respect and kindness she always showed me, the big-city alien grafted onto a small farming town by way of a happenstance meeting with her daughter in a far-away land, she also gave me another treasured gift: acceptance. From the beginning, she went out of her way to make me feel part of the large family she headed.

So, there I was at the end of her life, a most secular fellow in the midst of a most religious tribe, and I must say, it was terribly moving.

The funeral service in a breathtakingly lovely community church was fittingly transcendent, with its respectfully hushed tones, the great-grandchildren singing “Amazing Grace” in the choir loft, the candles and incense, readings from Ecclesiastes (“To every thing there is a season …”), the well-said sermon that honored and treasured Ruth’s long life. People came from far and wide to attend, some driving for days to reach the church.

And there was comfort food in church halls after the wake and funeral service and then the burial gathering the following day an hour away, where she was to be laid to rest with her husband. Food is part of the ritual of human passing, where pleasure and pain, good memories and sad immediacies, converge for sustenance of those who have been left behind.

As I went through this process, though from a further emotional remove certainly than Ruth’s immediate family, I still appreciated the essential value of such loving rituals and heavenly yearnings in helping survivors move on and face their next existential challenge. I tried to not focus on the reality that these painful passages also can bring out the worst in us.

So, although nonbelievers can often be antagonistic toward faith, I am reminded that it is pointlessly unkind and destructive to ever denigrate something so visceral and nurturing to people’s lives, whatever one’s philosophical differences.

I was thinking last week, as I waited patiently with others for the inevitable, that at such times theology and religious doctrine seem irrelevant, even as they precisely structure the final proceedings of a life lived out. What matters is love, remembrance and, as necessary, forgiveness.

Complete Article HERE!

How to prepare yourself for a good end of life

My parents lived good lives and expected to die good deaths. They exercised daily, ate plenty of fruits and vegetables, and kept, in their well-organized files, boilerplate advance health directives. But when he was 79, my beloved and seemingly vigorous father came up from his basement study, put on the kettle for tea, and had a devastating stroke. For the next 6½ years, my mother and I watched, heartbroken and largely helpless, as he descended into dementia, near-blindness and misery. To make matters worse, a pacemaker, thoughtlessly inserted two years after his stroke, unnecessarily prolonged his worst years on Earth.

That was a decade ago. Last month I turned 70. The peculiar problems of modern death — often overly medicalized and unnecessarily prolonged — are no longer abstractions to me. Even though I swim daily and take no medications, somewhere beyond the horizon, my death has saddled his horse and is heading my way. I want a better death than many of those I’ve recently seen.

In this I’m not alone. According to a 2017 Kaiser Foundation study, 7 in 10 Americans hope to die at home. But half die in nursing homes and hospitals, and more than a tenth are cruelly shuttled from one to the other in their final three days. Pain is a major barrier to a peaceful death, and nearly half of dying Americans suffer from uncontrolled pain. Nobody I know hopes to die in the soulless confines of an Intensive Care Unit. But more than a quarter of Medicare members cycle through one in their final month, and a fifth of Americans die in an ICU.

This state of affairs has many causes, among them fear, a culture-wide denial of death, ignorance of medicine’s limits, and a language barrier between medical staff and ordinary people. “They often feel abandoned at their greatest hour of need,” an HMO nurse told me about her many terminally ill patients. “But the oncologists tell us that their patients fire them if they are truthful.”

I don’t want this to be my story.

In the past three years, I’ve interviewed hundreds of people who have witnessed good deaths and hard ones, and I consulted top experts in end-of-life medicine. This is what I learned about how to get the best from our imperfect health care system and how to prepare for a good end of life.

Have a vision. Imagine what it would take you to die in peace and work back from there. Whom do you need to thank or forgive? Do you want to have someone reading to you from poetry or the Bible, or massaging your hands with oil, or simply holding them in silence? Talk about this with people you love.

Once you’ve got the basics clear, expand your horizons. A former forester, suffering from multiple sclerosis, was gurneyed into the woods in Washington state by volunteer firefighters for a last glimpse of his beloved trees. Something like this is possible if you face death while still enjoying life. Appoint someone with people skills and a backbone to speak for you if you can no longer speak for yourself.

Stay in charge. If your doctor isn’t curious about what matters to you or won’t tell you what’s going on in plain English, fire that doctor. That’s what Amy Berman did when a prominent oncologist told her to undergo chemotherapy, a mastectomy, radiation and then more chemo to treat her stage-four inflammatory breast cancer.

She settled on another oncologist who asked her, “What do you want to accomplish?” Berman said that she was aiming for a “Niagara Falls trajectory:” To live as well as possible for as long as possible, followed by a rapid final decline.

Berman, now 59, went on an estrogen suppressing pill. Eight years, later, she’s still working, she’s climbed the Great Wall of China, and has never been hospitalized. “Most doctors,” she says, “focus only on length of life. That’s not my only metric.”

Know the trajectory of your illness. If you face a frightening diagnosis, ask your doctor to draw a sketch tracking how you might feel and function during your illness and its treatments. A visual will yield far more helpful information than asking exactly how much time you have left.

When you become fragile, consider shifting your emphasis from cure to comfort and find an alternative to the emergency room.

And don’t be afraid to explore hospice sooner rather than later. It won’t make you die sooner, it’s covered by insurance, and you are more likely to die well, with your family supported and your pain under control.

Find your tribe and arrange caregivers. Dying at home is labor-intensive. Hospices provide home visits from nurses and other professionals, but your friends, relatives and hired aides will be the ones who empty bedpans and provide hands-on care. You don’t have to be rich, or a saint, to handle this well. You do need one fiercely committed person to act as a central tent pole and as many part-timers as you can marshal. People who die comfortable, well-supported deaths at home tend to have one of three things going for them: money, a rich social network of neighbors or friends, or a good government program (like PACE, the federal Program of All Inclusive Care for the Elderly).

Don’t wait until you’re at death’s door to explore your passions, deepen your relationships and find your posse. Do favors for your neighbors and mentor younger people. It doesn’t matter if you find your allies among fellow quilters, bridge-players, tai chi practitioners, or in the Christian Motorcyclists Association. You just need to share an activity face-to-face.

Take command of the space. No matter where death occurs, you can bring calm and meaning to the room. Don’t be afraid to rearrange the physical environment. Weddings have been held in ICUs so that a dying mother could witness the ceremony. In a hospital or nursing home, ask for a private room, get televisions and telemetry turned off, and stop the taking of vital signs.

Clean house: Hospice nurses often list five emotional tasks for the end of life: thank you, I love you, please forgive me, I forgive you, and goodbye. Do not underestimate the power of your emotional legacy, expressed in even a small, last-minute exchange. Kathy Duby of Mill Valley was raised on the East Coast by a violent alcoholic mother. She had no memory of ever hearing, “I love you.”

When Duby was in her 40s, her mother lay dying of breast cancer in a hospital in Boston. Over the phone, she told Duby, “Don’t come, I don’t want to see you.” Duby got on a plane anyway.

She walked into the hospital room to see a tiny figure curled up in bed — shrunken, yellow, bald, bronzed by jaundice, as Duby later wrote in a poem. Duby’s mother said aloud, “I love you and I’m sorry.”

Duby replied, “I love you and I’m sorry.”

“Those few moments,” Duby said, “Cleared up a lifetime of misunderstanding each other.”

Think of death as a rite of passage. In the days before effective medicine, our ancestors were guided by books and customs that framed dying as a spiritual ordeal rather than a medical event. Without abandoning the best of what modern medicine has to offer, return to that spirit.

Over the years, I’ve learned one thing: Those who contemplate their aging, vulnerability and mortality often live better lives and experience better deaths than those who don’t. They enroll in hospice earlier, and often feel and function better — and sometimes even live longer — than those who pursue maximum treatment.

We influence our lives, but we don’t control them, and the same goes for how they end. No matter how bravely you adapt to loss and how cannily you navigate our fragmented health system, dying will still represent the ultimate loss of control.

But you don’t have to be a passive victim. You retain moral agency. You can keep shaping your life all the way to its end — as long as you seize the power to imagine, to arrange support and to plan.

Complete Article HERE!

A matter of life and death

Dr. Steve Hadland learned over time to appreciate the “majesty and mystery” of death.

By Ellen Shehadeh

Dr. Steve Hadland began his medical career as an emergency room physician, fixing people and saving lives at all costs. These days he treasures his work as a hospice physician associated with Hospice of Petaluma, tending to the terminally ill and allowing them to die in comfort. Two extremes, one might say, but understandable given the intervening events in his life.

Steve’s practice melds a deep belief in social justice, reverence for life in all forms and enduring, self-described conservative views about end-of-life practices. His youthful face and genial manner, combined with an easy laugh and a soothing voice, belie the depth of his thinking, intellect and perceptions. He is informed not only by medical writings but also by psychology, literature, philosophy and classical music. One feels both calm and welcome in his presence.

Steve was the youngest in a conservative family growing up in Chicago. He attended university in Iowa City, studying astrophysics as a stepping stone to an astronaut program, and later majored in neuroscience. “University was a political and social awakening, as well as an intellectual one,” he says. He participated in marches and protests against the Vietnam War and for civil rights.

He longed to break out even further from his roots, however, and what better place than California, where “legend loomed for surfing and blondes.” He never quite managed the surfing thing, but wasted no time marrying his first wife, a blonde, during the summer of love, which coincided with his first year at Stanford Medical School. Their marriage of seven years included major involvements in the civil rights, anti-war and human potential movements.

All along, he had thoughts and profound feelings about end-of-life experiences, in part influenced by a Tolstoy novella, “The Death of Ivan Ilyich,” which he read in a death and dying course at Stanford. “It inspired me then, and continues to inspire me, year after year,” he says of the book, which he recommends “to anyone who really wants to know about what it’s like to die.”

Steve’s first job out of medical school, in 1972, was in a Kaiser emergency room. The nurses recognized his empathic nature and would steer the most difficult patients his way. Yet he recoiled at the Herculean efforts by staff to revive a dying patient, “all the excitement, the IVs,” and how quickly and “disrespectfully” staff abandoned a corpse when resuscitation efforts failed. At the time, there was no such thing as “do not resuscitate” or hospice.

Steve sought a different kind of medical experience and, in the fall of 1974, he arranged an interview with Dr. Michael Whitt in Point Reyes Station. He remembered the area from a drive many years before; “It cast a spell on me,” he says. Dr. Whitt’s liberal medical practice included home births, which at the time were popular in alternative communities, but Steve was stunned that he would deliver babies without liability insurance.

Steve’s conservative orientation and lack of maturity led him to decline a job offer by Dr. Whitt but, many years later, he would run a small integrative medical practice and pain management clinic out of his Point Reyes Station home. Ironically, he never secured liability insurance. “The influence of West Marin,” he quips.

Newly divorced in 1978, Steve encountered a single mother of three from Holland who was working as a Kaiser receptionist to pay her way through nursing school. They married two years later and, after 38 years, “it looks like it’s going the distance,” he says, laughing. Anneke van der Veen became an emergency room nurse, but they never worked together professionally, realizing the potential pitfalls of mixing business with pleasure.

Steve had traveled to England in 1978 to visit the first modern hospice. Although he was impressed with the approach, “I could tell I wasn’t ready for it,” he says. It was 12 years later that he helped start a hospice in Santa Clara, which he ran for five years along with an oncologist friend. He explains: “The world said, ‘You seem to be ready.’”

As society’s views about death and dying dramatically changed over the years, so clearly have Steve’s. Fifty years ago, death was a taboo subject and doctors rarely broached it with their terminal patients or even gave them an honest diagnosis. Now people take advantage of many choices, like refusing to eat and drink or using lethal medications now sanctioned by law. In California, the End of Life Option Act allows a patient to self-administer a lethal cocktail, but only after being judged by two physicians to be of sound mind and six months from death.

Some people object to the strictness of this law, which does not allow someone to assist in a patient’s suicide if the patient is physically or mentally unable to self-administer, even if it had been the patient’s expressed wish. In some states such assistance could be considered euthanasia or even murder.

Steve agrees with this self-described conservative view. “I don’t think it’s a bad thing; we don’t know what’s going on [inside their head]” or what kind of life these patients, some with Alzheimer’s and dementia, might have that we cannot fathom, he says. Surprisingly for a hospice worker, he was still opposed to the law when it was passed in July 2017, because “it’s a slippery slope.” How slippery? He cites a law in the Netherlands that now allows not only terminally ill patients but also depressed people to legally receive the fatal cocktail.

Steve explained that under California law, doctors may not legally list the cause of death as suicide when a patient has taken his or her own life. But the law “does allow a reference to the use of aid-in-dying meds as a contributing factor in the death, including the underlying fatal illness.” Steve, as a personal practice, does not include aid-in-dying medicines on the death certificate “to protect the patient from any backlash involving the choice of an induced death.”

Today Steve appreciates what he calls the “majesty and mystery” of death. Along with survivors, he participates in ancient rituals—“beautiful ceremonies” like washing and dressing the body—and finds it deeply humbling.

Steve is a spiritual man. He is influenced by the teachings of Jean Klein, a European who had an awakening in India. Although it is difficult to summarize Klein’s ideas, one important teaching is, “I am not identical with my thought process.” Steve believes that most of what one knows can be understood through other means, “coming from the heart and a sense of pure being.” This understanding has given him confidence to communicate with a dying person without words. “There is something in me that I know will make a difference. I am not anxious or worried, and am not in my head,” he explains.

About society’s recent openness to discussing death and dying, Steve cannot be more positive. It used to be, “If I don’t talk about it, it won’t happen.” The effect of the hospice movement has been to “lift the lid about frank, open discussions about death and dying. It helps people plan and frees them from living in a false reality, or a web of lies,” he says.

Naturally, one so intimate with death has opinions and thoughts about what awaits us all in the end. And what is the best death, to go quickly or to linger for a while? Not surprisingly, Steve believes that for himself, the ideal death would be when you know it is coming. “You get to finish your life, and say your goodbyes,” he says.

Steve also believes in a “continuity of consciousness.” This idea came to him intuitively years ago, after the death of his beloved dog, Misha, whose picture is prominently displayed on his office wall among other family photos. He tells this story, choking back tears.

“As I stood over the grave, I called out loud, ‘Where have you gone?’

A small voice inside asked, ‘Did you love me?’

‘Yes.’ ‘Do you still love me?’

‘Yes.’

‘Then that’s where I am.’”

Steve says, “My co-workers, patients and families living with the experience of dying have taught me much of what I know about love. Not the romantic love, of course, but something more encompassing, a feeling of compassion and connection with others that grows into this deep feeling of commonality and love.”

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