‘Good Death’

Choosing How to Live and How to Die

By Matt McMillen

Patty Webster heard her mom talk about death. A lot. So often that she and her sisters sometimes had to stop their mother from bringing it up. Her message got through, though.

Before her mom died of a stroke in 2016 at age 73, a previous stroke had already robbed her of her ability to communicate. But her family knew what she wanted at the end of her life because she had made it plain to them. That allowed them to share her wishes with her doctors and others so that she could die as she chose.

“We were her voice,” Webster says. “I didn’t know what a gift all of those talks had been until then.”

Webster works for the Conversation Project, an initiative of the Boston-based Institute for Healthcare Improvement. Founded in 2010, it encourages people to become comfortable talking about the type of care they want — and don’t want — at the end of their lives. A survey the group conducted in 2018 found that 95% of Americans are open to discussions about their wishes. But only about 1 in 3 have talked about what they would want. Five years earlier, however, that number had been closer to 1 in 4. More people, it seems, are talking about how they want to die. Some more than others.

“My family is tired of me talking about it,” Webster says, laughing.

But Webster wants those discussions to continue, and she wants the number of people having them to keep growing. She also wants to clarify: “Don’t talk about death but about how you want to live.”

Expressing your wishes for the end of your life and having them respected: Some call it “a good death.” Others may refer to it as “successful dying.” Ira Byock, MD, prefers “dying well.” A palliative care specialist and chief medical officer of the Institute for Human Caring at Providence St. Joseph Health in Gardena, CA, Byock is also the author of Dying Well: Peace and Possibilities at the End of Life.

“Every one of us as adults should be having this conversation,” he says.

In fact, Byock and his colleagues talk to high school seniors about advanced care planning: “We want to normalize this and make it a part of growing up.”

In a paper published in 2016, researchers reviewed 36 previously published studies to determine the “core themes” of a good death. They looked at the question from three perspectives: the person dying, the family, and health care providers. While 11 themes emerged, all three groups ranked three themes as most important:

  • Deciding how they wanted to die, including who would be with them and having their treatment preferences and funeral plans prepared
  • Approaching death without pain
  • Being emotionally well, meaning their psychological and spiritual well-being has been addressed

States Adapt to Change

In some parts of the country, the conversation includes drugs that end your life. Oregon became the first state to enact the Death with Dignity Act, which voters approved in a 1994 refereundum. After years of court challenges, the law took effect in 1998. It allows residents who are terminally ill, have 6 months or less to live, and are deemed mentally able to make their own decisions to end their lives. Ten years would pass before another state, Washington, would approve its own version. Maine became the most recent state to pass a version of the law. Gov. Janet Mills signed it on June 12. These are the other states where doctor-aided dying has been made legal and when the laws took effect:

  • California (2016)
  • Colorado (2016)
  • District of Columbia (2016/2017)
  • Hawaii (2018/2019)
  • New Jersey (2019)
  • Vermont (Patient Choice and Control at the End of Life Act, 2013)
  • Montana (Although no Death with Dignity law exists in Montana, the state’s Supreme Court ruled in 2009 that the practice was legal.)
  • The laws have sparked opposition. In Maine, for example, the state legislature passed the law by only four votes. In California, the law was overturned in court last year, but an appeals court put a hold on that ruling, and the state’s Supreme Court chose not to review the case. That leaves the law, known as the End of Life Option Act, in effect, though its future remains uncertain.

    Between 2009 and 2017, the most recent year for which statistics are available, 1,364 people in Washington had used the law to end their lives. Last year, in California, 337 people chose to die under the state’s End of Life Option Act. In Oregon, 2,217 terminally ill people have received life-ending drugs over the past 2 decades. Nearly two-thirds used those drugs, while the rest opted not to take them.

    “That’s been the case year after year,” says Peter Lyon, MD, medical director of End of Life Choices Oregon, a Portland-based organization that helps Oregonians navigate the Death with Dignity Act and other final decisions. “Some people just like to know that the medicine is there and available if their pain becomes too severe or their condition worsens a great deal.”

    On average, says Lyon, people do not reach out to his organization until they have about 3 to 4 weeks left to live. One reason: It’s so difficult for many people to think about, let alone talk about.

    “Talking about death is the hardest conversation that families can have,” he says.

    More Than a Medical Decision

    How you want to die is only partly about medical issues, Byock says. It’s also highly personal. And it will mean something different to you than it will to your spouse, your parents, your children, and others. To reach your own definition, Byock advises you take stock.

    “Ask yourself, ‘If I’m seriously ill, what would matter most to me?’” he says. “For the vast majority of us, it’s other people. We are hard-wired to matter to one another.”

    Your conversations, of course, should address practical matters, like life insurance information, how to access your safe deposit box, how to close your bank account — and your Facebook account — and more. Byock recalls how much that meant to him after his mother’s death.

    “She lived alone, we found that she kept a wooden box next to her phone with all the documents we needed,” he says. “Mom was still taking care of us.”

    You will also need to make decisions about key medical concerns. For example, do you want to be kept alive as long as possible, even if treatment causes great discomfort? Or do you prefer care that may allow you to enjoy better quality of life, though your death may come sooner?

    “Some people might worry that they’re not going to get enough treatment, while others might be afraid that they’ll get overly aggressive care,” says Kate DeBartolo, who directs the Conversation Project.

    Another crucial consideration: Who will speak for you if you are not able to voice your wishes? For many people, that may be a loved one, such as a family member, but it does not have to be.

    “I try to encourage my patients to think about who knows them best on their good days and bad days and who is readily available,” says palliative care doctor Christian Sinclair, MD, of the University of Kansas Health System in Kansas City.

    DeBartolo agrees: “I would love to expand the idea that it doesn’t have to be a traditional family member. Ask yourself: Who would you trust, and who do you think could really speak for you?”

    Such a person, known variously as a health care proxy or surrogate or agent, can be given power of attorney to make treatment decisions for you when you can’t make them for yourself. You also can –and should — put your wishes in writing. Legal documents, such as advance directives and living wills, are an alternative or may be used along with a proxy to make clear what you want.

    Sinclair, a co-author of the Institute of Medicine’s 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, says that over the last 15 years or so, conversations between patients and providers about end-of-life care have become more common as more doctors have been trained for such discussions.

    “Research shows that when these conversations happen and patients and clinicians are on the same page, there’s more likelihood that those patients will actually get the care that they want,” says Sinclair. “Having a good death is about making individual choices.”

    Complete Article HERE!

Death, Be Not Proud:

Literary Lessons on Death and Dying

Rituals like funerals, now less common, used to help us deal with death.

By Jeff Minick

For over three decades, Reverend F. Washington Jarvis served as headmaster of Boston’s Roxbury Latin School, the oldest school in continuous existence in North America. During this time, Jarvis delivered a series of addresses to the student body, the best of which were collected in “With Love and Prayers: A Headmaster Speaks to the Next Generation.” For a number of years, I taught “With Love and Prayers” to high schoolers and found that both parents and students valued the book for its wisdom, wit, and moral lessons.

In his chapter “The Spiritual Dimension,” Jarvis relates this anecdote to the young men in his charge:

The celebrated headmaster of Eton College, Cyril Alington, was once approached by an aggressive mother. He did not suffer fools gladly.
“Are you preparing Henry for a political career?” she asked Alington.
“No,” he said.
“Well, for a professional career?
“No,” he replied.
“For a business career, then?”
“No,” he repeated.
“Well, in a word, Dr. Alington, what are you here at Eton preparing Henry for?”
“In a word, madam? Death.”

As Jarvis then points out, the principal mission of Roxbury Latin is to prepare its students for life. “And,” he goes on, “the starting point of that preparation is the reality that life is short and ends in death.”

These few lines bring much to consider. Do we aim at getting our young people into “good” schools while neglecting to instill in them the classical virtues? Do we recognize that “life is short and ends in death”? If so, what outlook on the world should such a truth inculcate?

Before seeking answers to these questions, we must recognize that our ancestors were more familiar with death than we moderns. They lived among the sick and dying in ways we do not, and were forced to deal with circumstances that today are the domain of our health professionals. Victorian poetry, for example, is a thicket of verse about death and dying.

We are more distant from the dying. Low infant mortality rates have thankfully removed many of us from witnessing those tragedies, and though a majority of Americans want to die at home, only 20 percent do so.

Lacking this intimacy with the death of earlier generations, we may, if we wish greater familiarity, turn to literature, Victorian or otherwise. Stories and poems can give us intimate portraits of the hope and the despair, the joy and the sorrow, the courage and fear of the dying and those who surround them.

Let’s look at four novels in which the characters exit this earth in dramatically different ways. Each of them offers a lesson on death.

‘The Death of Ivan Ilyich’

Portrait of Leo Tolstoy, 1887, by Ilya Repin. Oil on canvas. Tretyakov Gallery, Moscow.

In “The Death of Ivan Ilyich,” Leo Tolstoy’s novella and perhaps the greatest of all fictional meditations on the debt we owe to nature, Ivan Ilyich lies on his deathbed wondering whether he has lived a good life.

As doubts fill him, and as death creeps ever closer, he suddenly realizes that “though his life had not been what it should have been, this could still be rectified.” In his last hours, he is flooded with sorrow and pity for the son and wife he has neglected, and though they cannot understand him when he begs their forgiveness, he dies “knowing that He whose understanding mattered would understand.”

Ivan Ilyich goes to his grave in peace, knowing the truth of Katharine Tynan’s lines from “The Great Mercy”: “Betwixt the saddle and the ground/was mercy sought and mercy found.”

Here Tolstoy reminds us that even on our deathbed, we may yet clear our conscience and set right those things that we have done or failed to do.

‘Kristin Lavransdatter’

Sigrid Undset as a girl. The Noble Prize-winning novelist wrote a trilogy called “Kristen Lavransdatter.”

In Sigrid Undset’s trilogy of medieval Norway, “Kristin Lavransdatter,” we discover the importance of ritual in death. The Christian injunction “To bury the dead” means more than tumbling a corpse into a grave, covering it over with earth, and moving on. During the long death of Kristin’s father, Lavrans, the neighbors visit, the priest performs the last rites, a vigil is held after Lavrans breathes his last, and later there is a feast to celebrate his memory.

From Kristin and her kin, we moderns might learn once again how to “bury the dead.” More and more, I hear of people and know a few of them who when a loved one dies, conduct no ritual of passage, no funeral, no memorial service. An obituary may appear in the paper, or not, but otherwise the survivors put the deceased into the grave or columbarium without ceremony.

With this practice, we fail to realize that we have cheated ourselves of the comfort of a formal farewell and have tarnished our humanity in the bargain.

‘A Tale of Two Cities’

In “A Tale of Two Cities,” Charles Dickens puts Sydney Carton, a barrister, an alcoholic, and a cynic, onto the platform of a guillotine after Carton nobly takes the place of another man sentenced to die by execution. Carton’s thoughts before the fall of the blade bring him solace: “It is a far, far better thing I do than I have ever done; it is a far, far better rest that I go to than I have ever known.”

From Carton, we receive a lesson in courage when faced with death.

‘Little Women’

Louisa May Alcott, the author of “Little Women,” wrote one of the most heartrending death scenes in all of English literature. In the story, based on her own life, she describes the death of her dear sister Beth.

Of course, as Louisa May Alcott notes in “Little Women,” “Seldom except in books do the dying utter memorable words, see visions, or depart with beatified countenances …”

In describing the passing of young Beth March, whose “end comes as naturally and simply as sleep,” Alcott shows her readers that, like Sydney Carton, those who die possess the power to bequeath gifts to the living. Before she slips into the shadows, Beth reads some lines written by her beloved sister Jo. And she realizes that her illness and impending death have caused Jo, her caretaker, to grow and mature, and to take from her lessons in bravery and her “cheerful, uncomplaining spirit in its prison-house of pain.”

Like in these novels, the loved ones with whom I have sat while they closed their eyes and faded away have given me instruction. Perhaps the best of these teachers was my mother, who died from cancer 30 years ago. In her final lesson—perhaps her greatest lesson—she taught me and my brothers and sisters by way of example how to die with grace and courage.

If I find myself in my mother’s circumstances, with time to bid goodbye to those I love, and if I possess even half of her strength, I will die a fortunate man.

Complete Article HERE!

Working Too Hard For A Good Death

Has Competitive Dying Become A Thing?

By Howard Gleckman

We Americans love to compete. We bet in March Madness office pools on who will win the annual college basketball championship. We pay a pretty penny for the best manicured lawn in the neighborhood or the biggest flat screen in the condo.  Some of us will pay bribes to get our kids into the best colleges.

And, now it seems, there is a growing need to compete over who will have the best death. You know, the one where we are at home, pain-free but alert, surrounded by our loving families, singing our favorite songs, fully at ease with our last moments of mortal life.

For many of us, the reality will be quite different. Despite everyone’s best efforts, we may die in a hospital. The kids may not make it in time from their homes in LA or Chicago. The medications that relieve our pain may also slow our thinking. And we may not have resolved all those family issues that lingered inexplicably for decades.

More guilt

What’s troubling about this drive for a good death (or, perhaps in our competitive world, the best death) is that many of us never will achieve it—often for reasons out of our control. And that may leave our surviving loved ones with an even bigger sense of guilt than they already have. And paradoxically, those who cared the most may end up feeling the most guilty and depressed.

Failing at some ideal of death may even make dying more difficult. Dr. Andreas Laupacis, a palliative care physician and professor of medicine at the University of Toronto, shared this concern in a wise 2018 essay about the idea of good death: “I worry that the term makes people who die with pain or psychological distress think that it is partially their fault…. They haven’t tried hard enough or aren’t tough enough.”

He even suggests it may add to the psychological burden of their doctors: “I worry that health care practitioners who have provided their best possible care will feel inadequate.”

A good life

Just as troubling: An excessive focus on the last hours of life shifts attention from the months or even years before that. Many older adults will die after living a long time with chronic conditions. It would be nice, as we focus on a good death, if we also think about a good life, especially during the time when it may include some level of disability.

The idea of competitive dying may be counterproductive in part because there is no true good death. Or rather, there are millions of them. For decades, clinicians have tried, and largely failed, to establish some agreed-upon norms. And researchers have no real idea how many people do in fact die a good death, by whatever measure.

Physicians and surviving family members, it turns out, often have different ideas of a good death than those who are doing the dying. For example, family members are much more likely than patients to say that maintaining dignity is important at the end of life.

But this uncertainty isn’t slowing us down. Google “good death” and you’ll get 1.97 million hits. Search Amazon, and you’ll find dozens of books. Bloggers blog on their own impending deaths or that of their relatives. A 2016 literature review turned about three dozen peer reviewed articles on what constitutes “successful dying.”

Better to watch a sunset

One Amazon reviewer wrote that she had read 60 books on a good death to prepare for her own passing. I don’t know if she was living with a terminal disease or just thinking way ahead. But I can’t help but wonder if her time would have been better spent watching a sunset, going to a concert, or having dinner with friends instead of being so focused on how to do death right.

This trend is by no means all bad. We are thinking—and talking—about a topic that for too long has been taboo in the US. But like those parents who were bribing college officials to get their children into the best schools, we may be going overboard. And we may be setting unrealistic, and counterproductive, expectations for ourselves and our families.

We absolutely should be proactive when it comes to preparing advanced directives, choosing health care proxies, and talking to one another about death. Especially talking. But we also need to recognize that, sometimes, circumstances mean that many of us will die alone, or in some pain, or with unresolved family issues. All we can do is our best. And nobody should be keeping score.

Complete Article HERE!

What’s healthy dying?

6 steps on the path for doctors to know

By Timothy M. Smith

Most Americans die in hospitals, but acute care settings are by default focused on saving lives and therefore struggle to deal with death as something other than the unfortunate outcome of having no interventions left to try. An expert in end-of-life care notes that death is an essential part of life for patients and their families and suggests several steps physicians can take to make death a “healthy” experience.

For starters, Chapple said, one should acknowledge that the aim of acute care settings is to rescue patients, to avoid death at all costs.

“If there is an intervention to try, that’s what we’re going to do,” Chapple said, noting that this urge is reinforced by health care payment mechanisms, as well as by family members’ anguish. “So, it’s very difficult to move in a different direction. It’s like a train that you can’t jump off of.”

Trying everything, however, can undermine our cultural and clinical capacity to acknowledge the importance of dying, Chapple said. She suggested taking the following steps to reinforce the concept of dying in a healthy way.

Focus on patient safety and autonomy. “I worry that patients are overmedicated or undermedicated, that we’re not reacting to what’s really happening to the patient,” Chapple said. “Healthy dying is when patients themselves get to choose the agenda and get to take their own time—as long as they’re not suffering at all, or they appear not to be suffering—and we all just take their timetable and let it happen.”

Acknowledge death as a part of life. This begins with making the most of what Chapple called the “critical present” by suggesting that family members take time to reflect on the patient’s life. “It’s sort of antithetical to the way acute care is set up, which is doing all the time, rather than being, rather than existing and noticing the existential significance of where we are right at this moment,” she said.

Reset loved ones’ expectations. In critical care, Chapple often tells families, “This person has never died before, and this is our chance to make it the best dying they can possibly have.” She suggested preparing family members for what might happen logistically, such as transferring the patient to a step-down unit, and noting that the active dying phase can last several days.

Encourage family members to talk to patients. Hearing is thought to be one of the last senses to go in dying patients, so it may help to share memories. “Families may not talk to each other because they think the family knows all the stories,” she said, so members of the care team can help initiate this by asking about significant events in the patient’s life.

Note the importance of religious rituals. Ceremonies, prayers and songs can help make this time meaningful too.

Suggest loved ones say goodbye in their own ways. Let family members know the following, Chapple suggested: “If you want to … say to the person something that you’ve always wanted to say and never had the opportunity or you certainly want them to know before they die, this is the time to do that.”

Complete Article HERE!

Hospice Physician B.J. Miller: ‘Life is Not a Fight Against Death’

As executive director of San Francisco’s Zen Hospice Project, BJ Miller has helped pioneer the field of palliative care.

By Jim Parker

Hospice and palliative care physician Bruce (B.J.) Miller has made it his mission to help people “live well in the face of death.”

A hospice and palliative care physician at the University of California Helen Diller Family Comprehensive Cancer Center and former executive director of the Zen Hospice Project, Miller speaks nationally about end-of-life care, including the benefits of hospice and palliative care, and was featured in the Netflix documentary short film, End Game.

His new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-authored with journalist Shoshana Berger, is designed to educate the public about the options and obstacles that patients and families encounter at the end of life.

Miller’s has experienced palliative medicine both as a clinician and as a patient. An accident during his college years resulted in the amputation of one arm below the elbow and both legs below the knees.

“Part of the reason that I wound up becoming a doctor is that I came close to death in my own life, earlier than expected and in a dramatic enough way that I had little choice but to sit up and take notice,” Miller wrote in the book.

Miller spoke with Hospice News about perceptions of death in our society and its influence on patients’ choices, including hospice election, how patients should be cared for at the end of life, as well as the policy, practical and financial considerations that can impact that care.

“Hospice is a business too, and is affected by the same mundane staffing issues as any other: Illness, vacations, car trouble. The difference here is that a long wait for a bad latte will never be comparable to a late nursing visit when you are in desperate need for help,” Miller and Berger wrote in the book. “The hospice system is a part of our stressed health care system and that means it is stressed too. Burnout and turnover are significant problems across the industry; meanwhile, training programs struggle to impart the sort of knowledge and grizzled experience that good patient care requires.”

Regarding your book, A Beginner’s Guide to the End, what factors led you to decide that a resource like this was needed?

Being a clinician working in the hospice and palliative care space, I see patient after patient and family after family languish and suffer due to lack of information. This is certainly true anywhere in health care, but especially in our field because our explicit mission is to ease suffering. And this has proven very tricky. Most people don’t know what palliative care is. Many people know what hospice is, but they have so many misunderstandings of it.

I felt there was a need to get a general book out there to cover the waterfront, the hope being that essentially that we could raise the floor. We are not going to blow off the ceiling, but at least we can raise the floor and level the playing field so most everybody has some access to sound, up-to-date information. That was the impulse.

At several points in the book it’s mentioned that there is a kind of taboo around the topic of death. How do you think that influences people’s choices at the end of life, including electing hospice?

Our language gives us away. We have this old-fashioned notion that life is a fight against death, as though death were a foreign invader instead of a natural thing that is completely entwined with life.

We talk about death as a failure. In medicine we say, “He failed treatment.” That they “lost the battle,” and so forth. So we find all these exotic ways to keep the subject at a distance, and in daily life it has become easier and easier to become distracted from this. And it means that so many people wait way too long to elect hospice. And if they do enter hospice at all, it’s often in the final days where there is not much time to do all that we can to bring life to a close and provide some comfort.

Even beyond the election of hospice I think if we built awareness of our mortality into our daily lives, my guess is that we’d be much kinder to ourselves and to each other and much more appreciative of the life we have while we have it.

How do you see the hospice and palliative landscape changing? How you think the space could be different five years from now?

My hope would be that medical training in general absorbs the principles of hospice and palliative medicine and drives this kind of care earlier into the picture. Just about any clinician of any stripe should have some kind of basic facility with these concepts — eventually 100% of their patients are going to die.

My hope is that our workforce grows to meet the rising demand, and that payment gets worked out so people are incentivized to pursue careers in this important field. From a policy standpoint, hopefully there will be some legislation passed promoting training for hospice and palliative care.

I do think we in the field also really have to take quality seriously. We used to be able to just absorb the idea — it was just a fact that hospice in particular provided superior quality care as a medical model — and that’s still largely true. But we have to be careful, it’s not just about getting more people into the field; we have to keep our eyes on quality.

Do you think that current payment models for hospice, in particular the Medicare Hospice Benefit, are copacetic with the mission of providing multidisciplinary person-centered care in accordance with patients’ goals and wishes for end of life?

I think in general the hospice benefit does a very good job. I think its sticking points are the requirement that patients have six months or less to live and the idea of all the things that you can’t do while you are on hospice.

Those things made sense in 1982, but they don’t make much sense anymore. For example there are a ton of treatments that might be considered life extending that are actually palliative in nature. I see a lot of patients who are fully aware of all these trade offs and forestall their hospice election because they want access to certain treatments that could maybe help them live longer but also could make them feel better.

So those two sticking points are ripe to be revisited. Otherwise I think the hospice benefit is very sound, but I wonder how much longer the hospice benefit will look like the hospice benefit of today.

How do you feel about a possible Medicare Advantage carve-in for hospice?

I am not a policy expert, and there may be some counter arguments. but I wonder what the unintended consequences of that would be.

Right now Medicare sets the guidelines, and therefore there is a centralized power and policy hub. In sending the hospice benefit to private companies, will Medicare Advantage plans be allowed to dictate their own hospice benefit? If so, I have to imagine quality would go down due to cost-cutting measures which ultimately would also be quality-cutting measures.

You have spoken about how the health care system has diseases rather than people at its center. Do you think that is starting to change and how can the health care community accelerate that change?

I believe it’s starting to change in that the phrase “patient-centered care” is pretty well known and recognized, and I don’t hear anyone arguing against patient-centered care. So I think there’s an opening dialogue around it.

But I also watch some of my medical colleagues roll their eyes at it, and for good reason: Our population, health, and disease and treatments are so complex that it’s practically impossible for patients to make an informed decision, because we haven’t done a very good job of educating them. So it’s unrealistic to say that we can do whatever the patient wants.

What it is realistic is a shared decision-making model in which your clinician is your advocate and together you are working on a plan that’s realistic for the options in front of you, and together you make decisions. I think that’s the golden chalice we are trying to find.

A good example is that if you were to follow patient satisfaction surveys — if those were the gold standard of a patient-centered system — data show that patients prefer doctors who prescribe more medications because that feels like their doctor cares, but more medications is not always the best clinical choice.

That’s a case in point where it’s much more complicated than the satisfaction of the patient or the family, so I think the refinement here is to elevate the patient’s voice in the decision-making process and do the listening on our side as clinicians and encourage patients to speak up for what’s important to them, and together move forward. That is how things should work.

One of the most pervasive barriers to bringing patients into palliative care and hospice is awareness. Most people simply don’t know what these things are. What can hospice and palliative care providers do to move the needle on that issue?

No one seems to understand the difference between hospice and palliative care, and I wonder what policy could come along to help smooth out these false divides. I keep waiting for someone to organize a kind of mass public service announcement, explaining to the public what the solutions are and explaining the field.

As a clinician I am explaining the distinctions to people all the time, and I struggle to do it in a succinct manner; so I think that you need some real communications expertise. It’s a very tricky and complicated communications challenge to distinguish between these concepts in a way that is understandable and relatable, especially when for a lot of people it’s inborn to want to look away.

I would love to see some sort of mass public communication effort. That would go very far even among the health care community. Many of my doctor and nurse colleagues themselves couldn’t tell you the difference between hospice and palliative care. That is very common, so we have a massive communications problem that will take a multimillion dollar effort to get past.

You have spoken about the need to bring intention and creativity into dying. Where does hospice fit into that?

Dying is way bigger than a medical event. Hospice begins with a conversation about what is important to the patient and what is not important to them, and just the nature of that conversation helps people to live with intention.

You help and encourage them to think through what is important, what can they live with, what can they live with, coming to terms with the finitude of their time, and then you can work from there and to some level design your days. Hospice facilitates those conversations all the time.

I think the creative spark is a way of life, a way of thinking in which daily life is a creative act, including at the end of life. We are all improvising all the time, bobbing and weaving, checking our plans versus the reality on the ground. Creativity often flows from reaction to limitations, and this is our limitation: We don’t have endless time.

Complete Article HERE!

Emptiness and Filling Out Forms:

A Practical Approach to Death

Dying with compassion means having a plan in place for those left behind. A practitioner recounts how she navigated the process with her dharma friends.

By Rena Graham

As a Tibetan Buddhist practitioner, I am constantly reminded that we never know when death might approach, but for years, I’d avoided dealing with one of the most practical aspects of death—the paperwork. I was not alone: Roughly half of all adults in North America do not have a living will. Then recently, I suffered a near-fatal illness that left me viscerally aware of how unprepared for death I was, and I made a pledge with two of my friends to get ready to leave our bodies behind for both ourselves and the people who survive us.

Bridging the end of December 2017 and the beginning of January 2018, I spent a month in a Vancouver, British Columbia hospital with a bacterial lung infection that had also invaded my pleural cavity—the first time I’d come down with a severe illness. After ten days in an intensive-care unit, I was moved to a recovery ward where I suffered a relapse. I spent my 62nd birthday, Christmas, and New Years with strangers in the hospital.

One night in the ICU, while I was partly delirious and falling in and out of sleep, I had a vision of a deceased friend reaching out to me. From what felt like disengaged consciousness, I looked down at my body on the hospital bed and realized I wasn’t ready to die. I hadn’t studied my lama’s [teacher’s] bardo teachings to navigate the intermediate state between death and rebirth, and did not want to take that journey without a road map. It didn’t matter whether this was a drug-fueled hallucination or an actual near-death experience. The important thing is that I rejected death, not out of fear, but through a recognition of the dreamlike nature of reality. After this experience, I felt that my attachment to this life and the things in it had diminished. I no longer wanted to ignore what came next. I wanted to be prepared. 

When I told my friends Liv and Rosie about this vision, we agreed to study the bardo teachings together once I’d had a couple of months of recuperation. By March, however, our plans shifted. Rosie had heard about a man (I’ll call him Ben) who had died on Lasqueti Island, an off-the-grid enclave in Canada’s Southern Gulf Islands that a local cookbook once described as “somewhere between Dogpatch and Shangri-La.” He had left his closest friends without any instructions. They had no idea if he had a family or where they might be.

“And he left an old dog behind!” Rosie said, “Can you imagine?”

“Not the bodhisattva way to die,” I replied, referring to the Buddhist ideal of compassion. I  also imagined what mess I might have left, had I not made it. 

Promising they would never leave others in such a quandary, Ben’s closest friends created a document called the Good to Go Kit, which detailed information required for end-of-life paperwork. (It is now sold at the Lasqueti Saturday market to raise funds for their medical center.)

“I’ve been wanting to make a will for 20 years,” said Liv, who would soon turn 70, “but research throws me into information overload, which adds to the emotional overwhelm I feel just thinking about it.”

“What if we did this together instead of studying the bardo?” suggested Rosie, who was in her early 50s.

Writing a will, figuring out advanced healthcare directives, and noting our final wishes didn’t have the mystical lure of bardo teachings, but we set that aside for a year while we took on this more practical area of inquiry. 

To use our time wisely, we set several parameters in place. We decided to meet one weekend a month to allow time for research and reflection between meetings, and we chose to keep our group small for ease of scheduling and to allow us to delve deeper into each topic.

 “I’d like this to be structured,” said Liv, “so it doesn’t devolve into a social event.”  

Rosie and I agreed but we knew better than to believe there didn’t need to be some socializing. She offered her place for the first meeting and said she’d cook. 

“We’ll get our chit-chat out of the way over dinner,” she said. “Since we can all be a little intimidated by this process, we have to make it fun.”

Later in March at Rosie’s garden suite, we sat down to dinner and Liv passed out copies of “A Contemplation of Food and Nourishment,” which begins with the appropriate words: “All life forms eat and are eaten, give up their lives to nourish others.” The prayer was written by Lama Mark Webber, Liv and Rosie’s teacher in the Drikung Kagyu school. (I also study with Lama Mark, although my main teacher, Khenpo Sonam Tobgyal, is in the Nyingma lineage.)  Turning our meetings into sacred practice seemed the obvious container to keep us on topic.

After dinner, Rosie rang a bell, we said a refuge prayer and recited the traditional four immeasurables prayer to generate equanimity, love, compassion, and joy toward all sentient beings.  

We traded our prayers for notebooks and reviewed our Good to Go Kit. Rosie smiled at the expected question of pets—including the name of the person who would be caring for the pet, the veterinarian and whether money had been set aside for their expenses. The form also asked whether we had hidden items or buried treasure.

Liv laughed and said, “People still bury strongboxes in their backyards?”

My answer was more prosaic: “Storage lockers.”

Rosie, Liv, and I are all single and childless. We are all self-employed and independent and have chosen Canada as our adopted homeland, meaning we have no family here. So we considered what roles friends might play and focused on those who were closer geographically than sentimentally. 

Pulling them in to act on our behalf seemed like such a “big ask” as Rosie said, but it was time to get real about our needs. The three of us shared our feelings about involving friends outside the dharma versus those within. 

When I was in the ICU, my friend Diane visited on several occasions and later told me she remained calm until she reached her car, where she cried uncontrollably. In marked contrast, my dharma friend Emma calmly asked what I needed and didn’t make much of a fuss. My Buddhist friends tend to view death as a natural transition from one incarnation to the next, while other friends may see it in more dire terms: as a finality or even failure. For end-of-life situations, asking non-Buddhist friends for limited practical support seemed kinder for all involved. 

We started to familiarize ourselves with the responsibilities of someone granted power of attorney for legal and financial proxy and enduring power of attorney for healthcare. Months later, we agreed our network of “dharma sisters” would be the perfect fit. While we hope to maintain our ability to make decisions for ourselves, should we require long-term care, we felt the baton could be passed between a dozen or so trustworthy women. We have since spoken casually about this with a number of these women and have made plans to organize a get-together and discuss our plans in greater detail, offering reciprocal support for what the Buddhist author Sallie Tisdale calls “the immeasurable wonder and disaster of change.” 

We concluded our five hours together by dedicating the merit and reciting prayers of dedication and aspiration. Long-life prayers for our lamas were offered, a bell rung, and heads bowed. Without the need for further conversation, we made our way into the chilly spring evening, silently reflecting on our new endeavor.

The next meeting and those following included menus and discussions that varied widely. Our research grew monthly with documents from government agencies, legal and trust firms, and funeral homes. None of which felt specific to Buddhist practitioners, until Rosie told us about Life in Relation to Death: Second Edition by the late Tibetan teacher Chagdud Tulku Rinpoche. This small book is out of print, but I purchased a Kindle copy. In the introduction, Chagdud Tulku, a respected Vajrayana teacher and skilled physician, reminds us that “[t]here are many methods, extraordinary and ordinary, to prepare for the transformation of death.” A book of Buddhist “pith instruction,” it includes in its second edition appendices that above all I found most valuable. These include suggested forms for “Durable Power of Attorney for Health Care,” “Advance Directive for Health Care (Living Will),” “Miscellaneous Statements for Witnesses, Notary and Physician,” and “Letter of Instructions.” It even includes a wonderful note for adding your ashes to tza-tsas, small sacred images stamped out of clay. We loved that idea, though we couldn’t imagine asking friends to go to that extent to honor our passing. 

We decided to use a community-based notary public to draw up our wills, but with further research, Liv realized she could also hire them to act as her executor, rather than use her bank. She found someone experienced and enjoyed the more personable experience. In contrast, Rosie and I’ve decided to pay friends now that we’ve found ways to simplify that process for them. 

Memorial Societies are common in North America and help consumers obtain reasonably priced funeral arrangements. Pre-paying services at a recommended funeral home allows us to leave funds with them for executor expenses, should our assets be frozen in probate. End-of-life insurance “add-ons” we like include travel protection—should we die away from home—and a final document service to close accounts and handle time-consuming administrative tasks. 

In her book Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, Sallie Tisdale says, “Your body is the last object for which you can be responsible, and this wish may be the most personal one you ever make.” Traditionally in Tibetan Buddhism, the edict is to leave the body undisturbed for three days after death so your consciousness has time to disengage. Tisdale states that American law generally allows you to leave a body in place for at least 24 hours and that while a hospital might want to give you less time, you might be able to negotiate for more. 

We then turned to the thorny topic of organ donation, with Rosie and Liv both deciding against. Knowing someone would soon be taking a scalpel to your cadaver would not enhance the peaceful mind they hope to die with, while my view was just the opposite. Besides gaining merit through donation, that same scalpel image provides great motivation to leave the body quickly.

While reading Tisdale’s chapter titled “Bodies,” I began entertaining thoughts of a green burial, but after months of discussion, I ended up where we all started: with expedient cremations. Rosie wanted her ashes buried and a fragrant rose bush planted on top. Liv and I were more comfortable in the water and decided our ashes would best be left there, but not scattered to ride on the wind. We selected biodegradable urns imprinted with tiny footprints. Made of sand and vegetable gel, they dissolve in water within three days, leaving gentle waves to lap our remnants out to sea. 

By getting past the practical and emotional aspects surrounding death, Liv has found herself in a space of awe. 

“There’s a wow factor to dying that I can now embrace,” she said. 

Rosie no longer worries about who will care for her in later years. Without that insecurity, she’s left with a yearning to be as present for the dying process as possible. And I have found that my understanding of life’s importance as we reach toward enlightenment has been heightened. 

Our small sangha still meets monthly and is now studying bardo teachings in our ongoing attempt to create compassionate dying from compassionate living. As we have continued with our arrangements, we’ve reflected on what we gained from our meetings. We feel blessed for the profound level of intimacy and trust we now share. We have a deeper regard for other friendships and feel enveloped by an enhanced sense of community. And we all feel more cared for.

As Chagdud Tulku Rinpoche wrote in Life in Relation to Death: “Putting worldly affairs in order can be an important spiritual process. Writing a will enables us to look at our attachments and transform them into generosity.”

Complete Article HERE!

Scared of death?

An end-of-life coach might be the answer

By

You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article HERE!