Death Without Duality: Three Both/Ands at the End of Life

by

[D]ying, like living, is not an either/or affair. It’s a both/and. Which is part of what makes it all so maddening for the floundering human who craves the comfort of dualities, of right and wrong, of fail-proof instructions.

I was reminded of this by some of the masters this month when I had the honor of hosting the End Well symposium in San Francisco. Twenty-eight speakers took the stage and talked about their experiences of almost dying, or treating the dying, or mourning someone who has died, or caring for the caregivers, or trying to shape policy or redesign systems or teach people about dying and/or do some of these simultaneously. There was some anger, and no small amount of sadness of course, but also a surprising amount of laughter. It turns out that we are funny right to the end.

Here are three both/and axioms that I heard echoed most often from people with a hugely wide range of professional backgrounds:

1) Reckoning with one’s life at the time of death is both the simplest thing in the world and the most complex.

Buddhist teacher and co-founder of the Zen Hospice Project, Frank Ostaseski, put it beautifully:

“At the end of life, it gets really simple: Am I loved? Did I love well?”

He’s right. Those questions are incredibly simple. As are the “four things” one can say — “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” — at the time of death, popularized by Ira Byock. One of the huge, unique gifts of facing the end of life — whether your own or someone you love — is that the urgency for healing is undeniable.

But the dynamics that spark and rot and flow and flutter underneath those questions are anything but simple. They are as complex as human relationships as a whole, which is to say very fucking complex. The answer to the question of whether I am loved may seem obvious to an outsider, but if I’ve never felt loved in the right way by the one person I needed it most from, I may not be capable of a “yes.” Even at the time of death, especially at the time of death, we are not logical creatures.

And to answer whether we have loved well is perhaps an even more charged and challenged task. We carry our regrets and sense of relational inadequacy around for decades and then, in the end, are asked to lay them down and surrender to our own imperfection. A tall order. The tallest perhaps. Dr. B.J. Miller, former executive director of the Zen Hospice Project and a clinician, teaches:

“If there is any enemy at the end of life it is shame.”

If we can’t shed our shame, it makes it hard to go. The power in the dying process, from what I gather from these wise souls, is acknowledging the complexity underneath or behind the simplicity and still managing to grace one another with the forgiveness and recognition that we all so desperately crave. It is the kind of emotional courage that transcends death.

2) Our job, when caring for the dying, is to ease suffering, but also recognize that it is a source of meaning for many people.

B.J. also said, “I wouldn’t wish a lack of suffering on my worst enemy. There’s no way to learn.”

He knows a bit about it, having had three limbs amputated and survived near-lethal burns on much of his body after an accident in college. His own time in hell was incredible preparation for a lifetime of treating patients and talking with people about facing death.

Some of us have an inclination to romanticize death. It’s the peak of drama, no doubt — the final scene. But of course it is not all buzzer beater catharsis and mystical visitations. It is sometimes choking and seizing and terrible, ugly, unbearable pain. In a word, suffering.

Now the role of palliative care, but all health care really, is to ease suffering. This is true and important and so often lost in our current system, which too often feeds the wrong motivations in otherwise decent and smart humans. We have to redesign the system so that easing suffering is the heart of everything we do, or as designer Ivor Williams puts it, “Death involves everyone. Design accordingly.”

And yet, B.J. Miller would not be B.J. Miller without his suffering. None of would be any of us without our suffering. It is what erodes our delusions and softens our hubris and strengthens our capacity to resist duality and blame. It is the fires in which we are all forged.

So that, too, we must remember. Which doesn’t mean easing off on pain meds, but it does mean witnessing suffering as a sacred and necessary part of being human, even as we try to work with its ferocity and sit with the one being visited at this particular moment. Or as Dr. Lucy Kalanithi, a clinician, beautiful speaker, and widow to Paul Kalanithi, author of When Breath Becomes Air, put it:

“A gift we get to have in medicine is to be witnesses. It’s a front row seat to the human condition.”

3) When you die, you are the most alone you will ever be, and yet you cannot do it well without the gift of others.

Think about it: There is no journey more solitary, by definition, than that of dying — unless you Thelma-and-Louise it. Just as you have lived in your body alone all your life — experienced its holy and wholly specific alchemy of aches and pains and pleasures — you and only you leave that body at some unpredictable moment. (As I write this, I’m reminded how otherworldly pregnancy is, a moment when women actually do, in a sense, share their solitary experience for 10 strange months.)

In any case, accepting the solitude of it is probably key to surrendering to it. You have to go it alone, at least from a purely physical sense.

And yet, to die well is to die together. Or at least surrounded by people who care for you in your time of exquisite vulnerability. Hopefully these are people who have known you at your most robust, people that you have cared for, people you have eaten and drunk too much with and laughed beside and tickled and fought with and repaired again. Hopefully these are people who know your wishes and will fight like momma bears to see them through.

In one study, 66 percent of people said that the thing they feared most at the moment of death was pain. Understandable. And not particularly surprising. Do you know what topped that fear? The fear that they would be a burden to their family members — logistically, psychologically, financially.

Dr. Aditi Mallick says, “The things that scare us the most about death are at the core of what it means to be human.” Indeed, we fear being dependent on others, being inconvenient and messy and powerless, our whole lives long. And when we die, this fear becomes epic. Our power lies in making peace with it. If we live like we will one day die, then we can’t help but create relationships that are loving and strong and imperfect and they can weather even this, the final test of the human condition.

As B.J. puts it, “The end of life is a call to learn how to be loved. The hardest thing of all.”

Complete Article HERE!

People are hiring doulas to help them die

By Molly Shea

Chad Lewis charges $20 to $25 an hour to assist the gravely ill and their families.

[W]hen Chad Lewis’ mother passed away seven years ago from complications from diabetes, he couldn’t stop thinking about her death. “It wasn’t loving and sweet,” he says. “It was chaotic and angry and scary.”

So Lewis, a 39-year-old who lives in Astoria, set out to find a better way to process the end of life, ultimately making a career shift from Broadway stage manager to death doula.

Doulas who aid women in giving birth have been trendy for years, but now a different type of support person is helping people navigate life’s other major passage. Dying people and their loved ones are hiring death doulas to help them coordinate end-of-life care and vigils, plan funerals and provide a sympathetic but unattached ear.

The profession first came into being in the early aughts and is growing increasingly popular. In 2014, Suzanne O’Brien launched the New York City-based Doulagivers, an online training program for death doulas.

“I can hardly keep up with demand,” says O’Brien, who also holds monthly seminars at an Upper West Side branch of the New York Public Library.

The process usually starts with a patient deciding how they want to die and outlining that with the doulas.

“It’s similar to a birthing plan … Where [do] you want to die? What kind of room you want to die in? What [do] you want to be looking at? What [do] you want it to smell like?” says Shelby Kirillin, 41, a Richmond, Va.-based death doula. She charges between $1,000 and $3,000 as a retainer fee, and asks for payment upfront to avoid chasing down money posthumously. She’ll also work pro bono if a situation merits it.

The “scary” death of Chad Lewis’ mother led him to become a doula.

“I had one young girl say she wanted to die in a yurt,” says Kirillin of a client who’s currently planning her own death. The girl’s cancer condition makes a yurt too impractical, so Kirillin is getting creative. “We decided on mosquito netting over her bed, and twinkle lights to look like stars.” After she takes her last breath, her loved ones will put wildflowers in her hair.

Death doulas also help out after someone passes. Lewis, who charges $20 to $25 per hour, likes to create a basic plan to take care of issues such as child care, grocery shopping and bill payment, to clear up mental space for grieving families.

And more than anything, the professionals help patients process what they’re going through.

“Families buffer pain — you hate to see people you love in pain. And doulas aren’t buffers,” says Kirillin. “Instead of saying, ‘OK, let’s see if we can give you meds,’ I’ll say, yeah, ‘I bet you are in pain. Tell me about it — what does it feel like?’”

When Richmond resident Mel Titus’ best friend of 31 years, Kim, was entering the final stages of her battle with cervical and breast cancers last year, they were introduced to Kirillin.

They were skeptical at first, but Kim (whose last name is being withheld for personal reasons) decided on a death doula so she could manage her death the way she did her life. “She was a processor,” says Titus. “She really liked that she could come up with a plan and do things a certain way.”

And for Titus, Kirillin provided emotional support during an impossible time. “I would have tough days, and I’d call Shelby, and she’d walk me through it,” she says.

Kirillin helped the duo plan Kim’s visitor schedule, and what music they’d play and books they’d read in the final days. Taking care of logistics freed them up to reminisce about Kim’s life, and even laugh about how things were going. “We actually had some funny moments, believe it or not,” says Titus. “It’s sad, but it can be a happy thing, too.”

Complete Article HERE!

Most people want to die at home, but many land in hospitals getting unwanted care

 

By Andrew MacPherson and Ravi B. Parikh

[W]here do you want to die? When asked, the vast majority of Americans answer with two words: “At home.”

Despite living in a country that delivers some of the best health care in the world, we often settle for end-of-life care that is inconsistent with our wishes and administered in settings that are unfamiliar, even dangerous. In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not.

Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.

Using data from the Dartmouth Atlas — a source of information and analytics that organizes Medicare data by a variety of indicators linked to medical resource use — we recently ranked geographic areas based on markers of end-of-life care quality, including deaths in the hospital and number of physicians seen in the last year of life. People are accustomed to ranking areas of the country based on availability of high-quality arts, universities, restaurants, parks and recreation and health-care quality overall. But we can also rank areas based on how they treat us at an important moment of life: when it’s coming to an end.

It turns out not all areas are created equal. Critical questions abound. For example, why do 71 percent of those who die in Ogden, Utah, receive hospice care, while only 31 percent do in Manhattan? Why is the rate of deaths in intensive care units in Cedar Rapids, Iowa, almost four times that of Los Angeles? Why do only 12 percent of individuals in Sun City, Ariz., die in a hospital, while 30 percent do in McAllen, Texas?

Race and other demographics in a given area certainly matter. One systematic review of more than 20 studies showed that African American and Hispanic individuals utilize advance-care planning and hospice far less than whites. More research is needed to explore these differences and to close these gaps and demand high-quality, personalized care for people of all races.

But race and demographics don’t provide all the answers. For instance, Sarasota and St. Petersburg, Fla., are only 45 miles apart and have similar ethnic demographics. Yet we found that they score quite differently on several key quality metrics at the end of life.

A variety of factors probably contribute to our findings. Hospice, which for 35 years has provided team-based care, usually at home, to those nearing the end of life and remains enormously successful and popular, is under­utilized. Most people enroll in hospice fewer than 20 days before death, despite a Medicare benefit that allows patients to stay for up to six months. Hospice enrollment has been shown to be highly dependent on the type of doctor that you see. In fact, one study among cancer patients with poor prognoses showed that physician characteristics (specialty, experience with practicing in an inpatient setting, experience at hospitals, etc.) mattered much more than patient characteristics (age, gender, race, etc.) in determining whether patients enrolled in hospice. For example, oncologists and doctors practicing at nonprofit hospitals were far more likely than other doctors to recommend hospice.

Also, physicians in a given geographic area are likely to have similar approaches to health care. They may collectively differ from physicians in another area in their familiarity and comfort with offering hospice care to a patient. This may explain why hospice enrollment significantly varies among geographic regions.

Palliative care, which focuses on alleviation of suffering, is often misunderstood by doctors as giving up. Health professionals’ lack of longitudinal, substantive training in end-of-life care only compounds the problem.

Perhaps most important, fewer than half of Americans have had a conversation about their end-of-life wishes — a process known as advance care planning — and only one-third have expressed those wishes in writing for a health-care provider to follow when they become seriously ill. If people do not have a clear sense of their end-of-life wishes, it is easy to imagine that they may be swayed by a physician’s recommendation.

The private sector has led the way in addressing the under­utilization of hospice and improving end-of-life care. For instance, health insurers such as Aetna have devised programs integrating nurse-led case management services for seriously ill individuals, reducing costly and undesired emergency room visits while increasing appropriate hospice referrals. And start-ups including Aspire Health are working with communities to provide palliative care in people’s homes while devising algorithms to help payers and providers identify individuals who might benefit from palliative and hospice care.

Congress also is considering bipartisan solutions consistent with best practices. Congressional leaders have recently introduced several pieces of legislation that would test new models of care for those facing advanced illness, support health professionals in training for end-of-life care and ensure that barriers are removed for consumers to access care.

And Medicare, via its Innovation Center, has led the way in testing promising care models to support those at the end of life, including the Medicare Care Choices Model, which allows individuals to receive hospice care alongside traditional, curative treatment.

But the secret sauce may be a shift in culture. We will not improve the death experience until we demand that our public- and private-sector leaders act and that our local health professionals encourage person-centered end-of-life care.

As with any social change, progress will be driven by a growing awareness and a desire for justice among families and patients. There are good and bad places to die in America. However, to ensure a better death for all, we must confront not just geographic disparities but also our resistance to thinking about death.

Complete Article HERE!

Can a dying patient be a healthy person?

By and

[T]he news was bad. Mimi, a woman in her early 80s, had been undergoing treatment for lymphoma. Her husband was being treated for bladder cancer. Recently, she developed chest pain, and a biopsy showed that she had developed a secondary tumor of the pleura, the space around one of her lungs. Her oncology team’s mission was to share this bad news.

Mimi’s case was far from unique. Each year in the U.S., over 1.6 million patients receive hospice care, a number that has been increasing rapidly over the past few years. What made Mimi’s case remarkable was not the grimness of her prognosis but her reaction to it.

When the members of the team walked into Mimi’s hospital room, she was lying in bed holding hands with her husband, who was perched beside her on his motorized wheelchair. The attending oncologist gulped, took a deep breath, and began to break the news as gently as he could. Expecting to meet a flood of tears, he finished by expressing how sorry he was.

To the team’s surprise, however, no tears flowed. Instead Mimi looked over at her husband with a broad smile and said, “Do you know what day this is?” Somewhat perplexed, the oncologist had to admit that he did not. “Today is very is special,” said Mimi, “because it was 60 years ago this very day that my Jim and I were married.”

The team members reacted to Mimi with astonishment. How could an elderly woman with an ailing husband who had just been told that she had a second, lethal cancer respond with a smile? Compounding the team’s amazement, she then went on to share how grateful she felt for the life she and her husband had shared.

Mimi thanked the attending oncologist and the members of the team for their care, remarking how difficult it must be to deliver bad news to very sick patients. Instead of feeling sorry for herself, Mimi was expressing sympathy for the people caring for her, exhibiting a remarkable generosity of spirit in the face of a grim disease.

The members of the team walked out of Mimi’s room shaking their heads in amazement. Once they reached the hallway, the attending physician turned and addressed the group: “Mimi isn’t the only person in that room with cancer, but she is surely the sickest. And yet,” he continued, to nods all around, “she is also the healthiest of any of us.”

“Be thine own palace, or the world’s thy jail.” – John Donne

Disease need not define us

Mimi’s reaction highlights a distinction between disease and illness, the importance of which is becoming increasingly apparent. Simply put, a body has a disease, but only a person can have an illness. Different people can respond very differently to the same diagnosis, and those differences sometimes correspond to demographic categories, such as male or female. Mimi is a beautiful example of the ability to respond with joy and gratitude in the face of even life’s seemingly darkest moments.

Consider another very different patient the cancer team met with shortly after Mimi. Ron, a man in his 40s who had been cured of lymphoma, arrived in the oncology clinic expecting the attending oncologist to sign a form stating that he could not work and therefore qualified for disability payments. So far as the attending knew, there was no reason Ron couldn’t hold a job.

Ron’s experience of disease was very different from Mimi’s, a phenomenon familiar to cancer physicians. Despite a dire prognosis, Mimi was full of gratitude. Ron, by contrast, though cured of his disease and apparently completely healthy, looked at his life with resentment, even anger. He felt deeply wronged by his bout with cancer and operated with a sense that others should do what they could to help make it up to him.

Mimi was dying but content with her life. Ron was healthy but filled with bitterness. Both patients had the same diagnosis – cancer – but the two human beings differed dramatically, and so too did their illness experiences. Mimi felt blessed by 60 years of a good marriage, while Ron saw in his cancer just one more example of how unfair life had been to him.

“Death be not proud, though some have called thee Mighty and dreadful, for thou art not so…” – John Donne

The real meaning of health

When the members of the cancer team agreed that Mimi was the healthiest person in the room, they were thinking of health in terms of wholeness or integrity. In fact, the word health shares the same source as the word whole, implying completeness or fullness. Ron felt repeatedly slighted, but Mimi looked at life from a perspective of abundance.

A full life is not necessarily marked by material wealth, power over others, or fame. Many people who live richly do so modestly and quietly, never amassing fortunes, commanding legions, or seeing their picture in the newspaper. What enriches their lives is not success in the conventional sense but the knowledge that they have done their best to remain focused on what really matters.

Mimi easily called to mind many moments when she and those she cared about shared their company and their love. Any sense of regret or sorrow over what might have been quickly gave way to a sense of gratitude for what really was, still is, and will be. Her outlook on life was shaped by a deep conviction that it had a meaning that would transcend her own death.

When someone has built up a life ledger full of meaningful experiences, the prospect of serious illness and death often do not seem so threatening. For Mimi, who had lived most of her days with a keen awareness that they would not go on forever, death’s meaning had been transformed from “Life is pointless” to “Make every day count.”

Mimi regarded the prospect of dying as a lens through which to view the meaning of life. She saw her illness as another adventure through which she and Jim would pass. Death would separate them, but it would also draw them closer together, enabling them to see more clearly than ever how much their love meant to them.

From Mimi’s point of view, death is not a contaminant, fatally introduced to life at its final stage. Instead death is a fire that burns away all that is not essential, purifying a person’s vision of what is most real and most worth caring about. Though not happy to be ill, Mimi was in a profound sense grateful for death. Her sentiments echo those of the poet John Donne:

“One short sleep past and we wake eternally: And death shall be no more; death, thou shalt die.”

Complete Article HERE!

Two state medical societies drop opposition to medical aid-in-dying

by Joanne Finnegan

[T]wo state medical societies have dropped their opposition to medical aid-in-dying, a position that mirrors growing acceptance of the practice among many doctors.

The Massachusetts Medical Society on Saturday became the 10th chapter of the American Medical Association to depart from the profession’s long-standing opposition to physician-assisted dying, according to an organization announcement.  

The Vermont Medical Society also recently joined the list of medical associations that have voted to take a neutral stance on physician-assisted death. Massachusetts and Vermont joined medical societies in California, Colorado, Maryland, Maine, Minnesota, Nevada, Oregon and the District of Columbia in dropping opposition to what was once called physician-assisted suicide. Supporters of legislation that allows doctors to write a prescription for a lethal dose of medication that terminally ill adults can use to end their lives now prefer the term medical aid-in-dying.

The shift in position is a new one, as nine of those medical societies adopted a neutral stance in the last two years, according to the group Compassion & Choices. The group praised the action by the Massachusetts physicians’ group, which it hopes will improve the chances for passing legislation in the Bay State to legalize aid-in-dying.

The society’s House of Delegates voted to adopt a position of “neutral engagement,” which it says will allow it to serve as a medical and scientific resource as part of legislative efforts that will support shared decision-making between terminally ill patients and their physicians. The change followed the release of a survey of the society’s members that showed they supported the aid-in-dying bill the state legislature is considering by a 2-1 margin, Compassion & Choices said.

Also applauding the decision was Roger Kligler, M.D., a retired doctor who has stage 4 metastatic prostate cancer and filed a lawsuit against the state seeking the right to die using self-administered medication. Compassion & Choices and a fellow physician, who wants the right to prescribe medications to help patients die without fear of prosecution, have joined in that lawsuit.

“I am excited about this decision because the legislature greatly respects the medical society’s positions on healthcare issues and its previous opposition to medical aid-in-dying was a serious roadblock to passing legislation authorizing this end-of-life care option. I’m extremely grateful for the society’s change of heart,” Kligler said in the group’s announcement.

The Massachusetts society’s vote came after considerable discussion, as aid-in-dying raises ethical questions for many physicians.

Six states, including California, Colorado, Montana, Oregon, Vermont and Washington, as well as the District of Columbia, have explicitly authorized medical aid-in-dying

In Vermont, the medical society’s action caught up with existing law. The society dropped its opposition to the state’s 2013 death with dignity law, adopting a resolution at its annual meeting that says doctors have a right to decide if they should assist their patients in ending their lives.

While some physician groups have changed their stance, others have held firm. The American College of Physicians published an updated position statement in September reaffirming its opposition to legalization of what it still calls physician-assisted suicide.

Complete Article HERE!

Straight From The Patient’s Mouth

Videos Can Clearly State Your End-Of-Life Wishes

[F]or years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.

She prepared a living will refusing cardiopulmonary resuscitation.

She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.

She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.

“I was terrified of losing control,” this 70-year-old Philadelphia therapist said.

Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.

“I was like ‘Oh my God, it’s like someone was reading my diary — this is exactly what I want,’” she recalled.

Only a few U.S. organizations offer people the chance to create video testimonials, which are meant to supplement and expand upon written living wills and Physician Orders for Life Sustaining Treatment (POLST), now available in 26 states. Do-it-yourself videos are also a convenient option.

One organization doing pioneering work in this field is the Institute on HealthCare Directives, founded by Dr. Ferdinando Mirarchi, the Pennsylvania physician whose work Forman heard about. Others include MyDirectives, a Texas company that helps people create digital advance directives, including personal video and audio statements; Life Messages Media of Wisconsin, which also creates video memoirs and ethical wills, a way to share your values with your family; and In My Own Words, launched by a geriatric psychologist in California.

These organizations hope the videos will help physicians and families interpret and follow written advance directives. About one-third of adults have such end-of-life documents.

“It can give everyone confidence that Mom was competent and knew what she was signing and that no one tricked her by sticking a document in front of her and asking her to sign,” said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn.

Similarly, videos have the potential to ease some of the emotional angst that surrounds end-of-life decision-making. “A family gets to hear Mom saying, in her own words, what she wants, which can be profoundly reassuring,” said Dr. Monica Murphy, medical director of advance-care planning and end-of-life education for Huntsville Hospital System in Alabama.

Formats vary. The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations.

Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth. The cost: a one-time fee of $350, which covers 10 years of follow-up consultations and maintenance, or a setup fee of $50 to $100 accompanied by an annual fee of $35 to $50.

After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.

“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.

Easy accessibility to the videos is essential but may not be practical, yet. The institute houses videos on a server; they can be called up on digital devices via QR codes, or hyperlinked bar codes, that are printed on cards given to clients. (Forman carries hers in her wallet, next to her insurance card.) Passwords are discouraged because these might be a barrier in an emergency. Still, medical personnel aren’t accustomed to searching for cards of this sort.

Videos by MyDirectives clients also tend to be short — between 15 seconds and a minute. The service is free to consumers; the company’s business model relies on partnerships with health care organizations. “The consumer deserves to have their voice heard in electronic health records” that these organizations maintain, said Jeff Zucker, MyDirectives chief executive officer, who hopes that health systems will eventually embed patient videos in those records.

What weight video testimonials will carry in legal conflicts has yet to be determined. Only Maryland allows advance directives to be conveyed in a video format, while New Jersey explicitly recognizes video or audiotapes as supplements to written documents, according to the American Bar Association’s Commission on Law and Aging.

Multimedia advance directives likely will be taken into account in end-of-life disputes, just as a daughter’s statement that “Mom told me this is what she wanted last week” is given consideration, Pope said.

“Since the only thing that constitutes clear and convincing evidence under the law is the written advanced directive, make sure your video is consistent with what’s expressed in these documents,” he advised.

Physicians seem receptive to the videos. According to a study published this year, doctors were more likely to agree about recommended treatments for patients in difficult circumstances after viewing patient videos, as well as evaluating written advance directives.

“Doctors always question whether we’re doing the right thing when it’s just the paper document,” Mirarchi explained. “When you can see a patient expressing what their true intended wishes are, in their own voice, looking into a camera, that’s a very powerful tool.”

For their part, patients seem comfortable speaking before a camera, according to unpublished research conducted by Dr. Angelo Volandes, an internal medicine doctor at Massachusetts General Hospital and a pioneer in creating videos that help patients understand the pros and cons of end-of-life interventions.

Complete Article HERE!

They Comfort Strangers, So No One Dies Alone

David Wynn, 62, and Carolyn Lyon, 74, in Santa Ana, Calif., volunteer at a hospital where they accompany patients who are near death and don’t have loved ones to be with them in their final hours.

By Liyna Anwar

[W]hen patients are near death, and don’t have loved ones to be with them, David Wynn and Carolyn Lyon rush to the hospital.

“They have no one for various reasons, you know, they’ve outlived family, they’ve never married,” Lyon says.

For about six years, Lyon has been comforting patients in their final hours at St. Joseph Hospital in Orange, Calif.; for Wynn, it’s been about nine years.

“For some reason I always wonder about the person’s mother,” David Wynn says. “She saw him first, and I saw him last. It was her and me that are the bookends of this person’s life. So each time that I leave a patient who has died, there is this element of sadness.”

But this kind of work also has its rewards. Wynn remembers one man who was estranged from his family.

“I was sitting there with him and I heard somebody at the door. Turns out it’s his son,” Wynn says. “And he, I guess, felt a little bit uncomfortable, and so he asked me to stay.”

Then, the patient’s daughter came in. “These are people who hadn’t seen each other in maybe 10 or 20 years,” Wynn says.

While the family members exchanged apologies, Wynn recalls the daughter saying, “I don’t even know why I was angry at you, I don’t even remember.”

“And they said, ‘We’re going to try to be a family again,’ ” Wynn says.

“You know, we talk about the last senses to go would be the sense of touch and hearing,” Wynn says. “And I hope that there was enough left of the dad that he had some sense that this bad situation had been healed through his death.”

Wynn says he felt honored, simply to witness that reconciliation, at the end of the man’s life.

Complete Article HERE!