Month: February 2022

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Dignity therapy

— Making a patient’s last words count

Guided conversations with terminally ill people are popular with patients, families and doctors who’ve experienced them. But are they truly beneficial? Researchers are looking beneath the anecdotal appeal.

by Lola Butcher

In the mid-1990s, psychiatrist Harvey Max Chochinov and his colleagues were researching depression and anxiety in patients approaching the end of their lives when they became curious about this question: Why do some dying people wish for death and contemplate suicide while others, burdened with similar symptoms, experience serenity and a will to live right up to their last days?

Over the next decade, Chochinov’s team at the University of Manitoba in Canada developed a therapy designed to reduce depression, desire for death and suicidal thoughts at the end of life. Dignity therapy, as it is called, involves a guided conversation with a trained therapist to allow dying people to speak about the things that matter most to them.

“It is a conversation that we invite people into, to allow them to say the things they would want said before they are no longer in a position to be able to say it themselves,” Chochinov says.

Dignity therapy is little known to the general public but it has captivated end-of-life researchers around the world. Studies have yet to pin down exactly what benefits it confers, but research keeps confirming one thing: Patients, families and clinicians love it.

These end-of-life conversations are important, says Deborah Carr, a sociologist at Boston University who studies well-being in the last stages of life and explored the topic in the 2019Annual Review of Sociology.

A key need of people who know they are dying is tending to relationships with people who are important to them. This includes “being able to communicate their wishes to family and ensuring that their loved ones are able to say goodbye without regret,” she says.

And the closer we get to death, the more we need to understand what our lives have amounted to, says Kenneth J. Doka, senior vice president for grief programs for Hospice Foundation of America.

“As people reach the end of life, they want to look back and say, ‘My life counted. My life mattered. My life had value, had some importance,’ in whatever way they define it,” Doka says. “I think dignity therapy speaks to that need to find meaning in life and does it in a very structured and very successful way.”

A dignified ending

Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries like Belgium, the Netherlands and Luxembourg, where euthanasia and assisted suicide have long been legal. There he learned that the most common reason people gave for seeking assisted suicide was loss of dignity.

To learn more, Chochinov and his colleagues asked 213 terminal cancer patients to rate their sense of dignity on a seven-point scale. Nearly half reported a loss of dignity to some degree, and 7.5 percent identified loss of dignity as a significant concern. Patients in this latter group were much more likely to report pain, desire for death, anxiety and depression than those who reported little or no loss of dignity.

Dignity at the end of life means different things to different people, but in interviews with 50 terminally ill patients, Chochinov and his colleagues found that one of the most common answers related to a dying person’s perception of how they were seen by others.

“Dignity is about being deserving of honour, respect or esteem,” Chochinov says. “Patients who felt a lost sense of dignity oftentimes perceived that others didn’t see them as somebody who had a continued sense of worth.”

Dignity therapy is tailored to enhance this sense of worth. In a session, a therapist — typically a clinician or social worker — carefully leads the patient through a series of nine questions (see graphic) that help a person express how their life has been worthwhile.

“It’s not like a recipe, that you can just read out these nine questions and then call it dignity therapy,” Chochinov says. “We train therapists so that we can help them guide people through a very organic kind of conversation.”

The session typically lasts around an hour. About half is spent gathering biographical highlights, and the other half focuses on what Chochinov calls the “more wisdom-laden” thoughts that the patient wants to share.

A few days later, the patient receives an edited draft for review. “There’s an ethos of immediacy — your words matter, you matter,” he says. “They can edit it and they can sign off on it to say, ‘That is what I want as part of my legacy.’”

But does it work?

Miguel Julião, a physician in Lisbon, Portugal, specialises in helping patients who have difficult symptoms, which is why he was asked one day a few years ago to see a patient suffering with unbearable pain.

“The minute I got into his room, he told me ‘I would like you to help me die soon,’” Julião says. “I told him, ‘I don’t agree with euthanasia and I don’t do it, but I would like to know about you as a person and what you are most proud of in your life.’”

In the next few minutes, Julião learned about the man’s pride in raising “two good human beings” and stories of their life as a family. And he received an invitation to return for more conversations, which continued until the man died a month later.

The encounter prompted Julião, who was pursuing his doctorate at the time, to pivot his research and focus squarely on dignity therapy. He has had lots of company. Chochinov estimates that nearly 100 peer-reviewed research papers, and at least four in-depth analyses — “systematic reviews” of the accumulated science — have been published so far, and more studies are ongoing. The largest study yet, of 560 patients treated at six sites across the country, is now being conducted by Diana Wilkie, a nursing professor at the University of Florida, and colleagues.

Wilkie also helped conduct the first systematic review, published in 2015, which came up with a conundrum. When all studies were viewed together, the evidence that dignity therapy reduced desire for death was lacking. “The findings have been mixed,” she says. “In the smaller studies, you see benefit sometimes and sometimes not; in the larger studies, not.”

The most definitive study— Chochinov’s original clinical trial, completed by 326 adults in Canada, the United States and Australia who were expected to live six months or less — found that the therapy did not mitigate “outright distress such as depression, desire for death or suicidality,” although it provided other benefits, including an improved quality of life and a change in how the patients’ family regarded and appreciated them. A few years later, however, Julião conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralisation, desire for death, depression and anxiety.

Julião thinks that the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not. But Julião also notes that his study was small, with only 80 participants.

“We still need more evidence,” he says. “But, on the other hand, you see a high interest among clinicians, because they see it work in daily practice.”

Positive and negative results also may depend upon how studies measure “success.” Scott Irwin, a psychiatrist at Cedars-Sinai Cancer in Los Angeles, worked at a San Diego hospice that introduced dignity therapy in 2009.

“It was absolutely worthwhile — no question,” Irwin says. “Not only did the patients love it, but the nurses loved it and got to know their patients better. It was sort of a transformative experience for patients and the care team.”

Indeed, Wilkie’s literature review reported “overwhelming acceptability, rare for any medical intervention.” Patients seem to get something out of it, even if that “something” isn’t captured by measures like reduced desire for death. In one study of 100 terminally ill patients who received dignity therapy, 91 percent reported feeling satisfied or highly satisfied; in another, 93 percent gave high ratings of satisfaction.

In Portugal, family members of dying individuals have prompted Julião to develop new uses for the therapy. He and Chochinov first adapted the interview to be appropriate for adolescents. More recently, two individuals told Julião they regretted that their loved ones had died without receiving dignity therapy, prompting the researchers to create a posthumous therapy for surviving friends and family members.

In a study of this interview protocol for survivors, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’” Julião says. Doing dignity therapy posthumously could be useful in helping families deal with bereavement, he says — an idea he’d like to test.

Barriers to use

But for all its appeal, few patients actually receive dignity therapy. Though the tool is well-known among clinicians and social workers who specialise in caring for seriously ill patients, it is not routinely available in the US, Doka says.

A primary barrier is time. The therapy session is designed to last just one hour, but in Irwin’s experience at the hospice, patients were often too tired or pain-ridden to get through the entire interview in one session. On average, a therapist met with a patient four times. And the interview then had to be edited by someone trained to create a concise narrative that is true to the patient’s perspective and sensitive in dealing with any comments that might be painful for loved ones to read.

Julião says he transcribes each patient’s interview himself and also edits it into the legacy document. The entire process typically takes about eight days; he suspects this is why he is one of only two people who provide dignity therapy in Portugal. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted since 2011. “But they don’t do it clinically because it’s hard for clinicians to dedicate so much time to this.”

Dignity therapy is most widely available in Winnipeg, its birthplace, where all clinicians at Cancer Care Manitoba, the organisation that provides cancer services in the province, have been trained in the protocol. If a patient expresses interest, or a clinician thinks a patient might be interested, a referral is made to one of the therapists, among them Chochinov.

“And then I see them, either in their hospital bed or more typically at their home,” he says.

A few months ago, he spent about an hour with a dying woman. She told him about her proudest accomplishments and shared some guidance for her loved ones.

A few days after he delivered a transcript of the conversation, the woman thanked him by email for their discussion and for the document that “will give my family something to treasure.”

“Dignity therapy is part of the bridge from here to there, from living my life fully to what remains at the end,” she wrote. “Thank you for helping me to tell this story.”

Complete Article ↪HERE↩!

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Should You Get a POLST?

These portable medical orders give the seriously ill more control over their care

by Larry Beresford

Blake Anderson, 64, lives with numerous medical conditions, including chronic back pain, the rheumatic disease ankylosing spondylitis, other autoimmune conditions affecting his tendons and nerves, and non-Hodgkin lymphoma, a lymphatic cancer. But although he is disabled and in pain, he says he deeply values life and has no wish to end his.

Residing in a board-and-care facility in Carlsbad, California, he has good friends and enjoys reading, conversation, learning new things and traveling the world via the Internet. But he also has a POLST form, signed by his doctor, spelling out the treatments he would not want to receive in the event of a medical crisis in which he could no longer speak for himself. Were his heart to stop beating, he would not want medical personnel to try to resuscitate him.

POLST is a medical form completed by a doctor, nurse practitioner or physician assistant in consultation with the patient. It allows people with serious or chronic illnesses or the frailties of age to spell out what kinds of medical care they would want to be given in potential future medical emergencies.

Unlike legal documents such as the more familiar living will or other advance directives, which can be completed by those in good health, POLST is for when a serious diagnosis is known to the patient. It is more likely to be recognized, read and honored by emergency responders who show up for that potential emergency, such as a heart attack, when someone calls 911.

And, POLST advocates say, it’s not just about saying no to interventions such as cardiopulmonary resuscitation (CPR). Some POLST documents may detail that the person does not want to go back to the hospital or be put on a ventilator. Other orders might note a trial period to see whether aggressive treatments would be successful. But patients can express their treatment preferences, including for doctors to “do everything” medically feasible to keep them alive, if that is what they wish. Ideally, the POLST form signed by the doctor is copied to the patient’s electronic health record and given to close family members and the patient’s named surrogate decision maker for health care decisions.

Bright pink (or green) forms

Anderson’s doctor, Karl Steinberg, M.D., a geriatrician and hospice/palliative medicine physician in Oceanside, California, who makes home visits for Scripps Health, visited him at home to talk about POLST. “When he found out that I would not want to be resuscitated, Dr. Steinberg told me about the bright pink form I could fill out and put up on my wall where it could clearly be seen,” Anderson says. “I didn’t know there was such a form until Dr. Steinberg told me. It took some worry out of [the medical situation] for me.”

Anderson says he feels he is doing well, all things considered. “I know there’s no cure for any of my diagnoses.” Were he to die of a sudden heart attack, he says, he would want to be left in peace. “In fact, I’d call POLST the ‘rest in peace’ form.”

Steinberg told Anderson that discussing goals for medical care is a routine part of his visits with older patients. “I’m a big proponent of POLST in my practice,” he says. But patients shouldn’t be shy about bringing it up to their doctors or talking about it with their families. CPR is not what it looks like on TV, Steinberg adds. “Most people with serious illness don’t survive even the initial procedure, much less get back to a condition of full, active life.” One analysis of over 433,000 Medicare beneficiaries 65 or older who underwent CPR in U.S. hospitals found the chances of surviving and being discharged were about 18 percent.

Honoring patients’ preferences

Devised in Oregon in the early 1990s by medical ethicists and clinicians who had discovered that patients’ preferences for care at the end of life were not being consistently honored, the typically brightly colored, letter-sized POLST form has since spread to most states (and to locations in more than 20 countries) in a variety of versions and names and stages of development.

It has become mainstream, at least among health professionals. The original name, “physician orders for life-sustaining treatment,” is sometimes replaced by “portable medical orders” or simply “POLST.” The National POLST office, which is leading efforts to standardize its dissemination and promote recommended national language for the states to follow, calls POLST a process and a conversation as well as a form.

POLST has a specific place in medical planning, adds Judy Thomas, CEO of the Coalition for Compassionate Care of California (CCCC), the home for implementing POLST in California. In recent years CCCC has worked to standardize POLST statewide, she says. “We also got it established in statute, which has helped to make health care providers more comfortable with it, knowing they were complying with the law.”

CCCC has also developed training for health care providers on how to have conversations about POLST with consumers and taught hundreds of people to go out and train others. POLST is becoming better known, and more people have seen it used for a loved one, Thomas says. California’s 2021–2022 budget included funds to develop a statewide electronic registry of POLST forms.

In Oregon, with its three decades of experience with POLST, nearly half the people who die of natural causes have a POLST form in that state’s electronic registry, password-protected and accessible to EMS personnel and emergency care physicians, says Susan W. Tolle, M.D., a professor of medicine and director of the Center for Ethics at Oregon Health & Science University in Portland.

“If we could encourage people to take a deep breath and step forward and say, ‘I really want to talk about this,’ it could trigger conversations in their families. COVID is one more reason why we need to talk about it now,” she says.

“It is a true gift if you can engage in advance care planning, which would help your loved ones feel they know what you would want in a crisis and that they are doing what you would have wanted,” Tolle explains. “They won’t have to wake up at 2 a.m. and wonder if they did the right thing.”

Complete Article ↪HERE↩!

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How The Brain Rewires Itself After Losing A Loved One

Neuroscientist Mary-Frances O’Connor explores what happens in the brain when you experience grief and why it’s a struggle to accept loss.

by Mary-Frances O’Connor

The following is an excerpt from The Grieving Brain: The Surprising Science of How We Learn from Love and Loss by Mary-Frances O’Connor.

Neuroscience is not necessarily the discipline that springs to mind when thinking of grief, and certainly, when my quest began, that was even less the case. Through my years of study and research, I eventually realized the brain has a problem to solve when a loved one has died. This is not a trivial problem. Losing our one-and-only overwhelms us, because we need our loved ones as much as we need food and water.

Fortunately, the brain is good at solving problems. In fact, the brain exists for precisely this function. After decades of research, I realized that the brain devotes lots of effort to mapping where our loved ones are while they are alive, so that we can find them when we need them. And the brain often prefers habits and predictions over new information. But it struggles to learn new information that cannot be ignored, like the absence of our loved one. Grieving requires the difficult task of throwing out the map we have used to navigate our lives together with our loved one and transforming our relationship with this person who has died. Grieving, or learning to live a meaningful life without our loved one, is ultimately a type of learning. Because learning is something we do our whole lives, seeing grieving as a type of learning may make it feel more familiar and understandable and give us the patience to allow this remarkable process to unfold.

When I talk to students or clinicians or even people sitting next to me on a plane, I find they have burning questions about grief. They ask: Is grief the same as depression? When people do not show their grief, is it because they are in denial? Is losing a child worse than losing a spouse? Then, very often, they ask me this type of question: I know someone whose mom/brother/best friend/husband died, and after six weeks/four months/eighteen months/ten years, they still feel grief. Is this normal?

After many years, it dawned on me that the assumptions behind people’s questions demonstrate that grief researchers have not been very successful at broadcasting what they have learned. That is what motivated me to write this book. I am steeped in what psychologist and grief researcher George Bonanno termed the new science of bereavement. The type of grief that I focus on in this book applies to those who have lost a spouse, a child, a best friend, or anyone with whom they are close. I also explore other losses, such as the loss of a job, or the pain we feel when a celebrity whom we admire greatly and have never met dies. I offer thoughts for those of us who are adjacent to someone who is grieving, to help us understand what is happening for them. This is not a book of practical advice, and yet many who have read it tell me they learned things they can apply to their own unique experience of loss.

The brain has always fascinated humanity, but new methods allow us to look inside that black box, and what we can see tantalizes us with possible answers to ancient questions. Having said that, I do not believe that a neuroscientific perspective on grief is any better than a sociological, a religious, or an anthropological one. I say that genuinely, despite devoting an entire career to the neurobiological lens. I believe our understanding of grief through a neurobiological lens can enhance our understanding, create a more holistic view of grief, and help us engage in new ways with the anguish and terror of what grief is like. Neuroscience is part of the conversation of our times. By understanding the myriad aspects of grief, by focusing in greater detail on how brain circuits, neurotransmitters, behaviors, and emotions are engaged during bereavement, we have an opportunity to empathize in a new way with those who are currently suffering. We can allow ourselves to feel grief, allow others to feel grief, and understand the experience of grieving—all with greater compassion and hope.

You may have noticed that I use the terms grief and grieving. Although you hear them used interchangeably, I make an important distinction between them. On the one hand, there is grief—the intense emotion that crashes over you like a wave, completely overwhelming, unable to be ignored. Grief is a moment that recurs over and over. However, these moments are distinct from what I call grieving, the word I use to refer to the process, not the moment, of grief. Grieving has a trajectory. Obviously, grief and grieving are related, which is why the two terms have been used interchangeably when describing our experience of loss. But there are key differences. You see, grief never ends, and it is a natural response to loss. You will experience pangs of grief over this specific person forever. You will have discrete moments that overwhelm you, even years after the death when you have restored your life to a meaningful, fulfilling experience. But, whereas you will feel the universally human emotion of grief forever, your grieving, your adaptation, changes the experience over time. The first one hundred times you have a wave of grief, you may think, I will never get through this, I cannot bear this. The one hundred and first time, you may think, I hate this, I don’t want this—but it is familiar, and I know I will get through this moment. Even if the feeling of grief is the same, your relationship to the feeling changes. Feeling grief years after your loss may make you doubt whether you have really adapted. If you think of the emotion and the process of adaptation as two different things, however, then it isn’t a problem that you experience grief even when you have been grieving for a long time.

You can think about our journey together through this book as a series of mysteries that we are solving, with part I organized around grief and part II organized around grieving. Each chapter tackles a particular question. Chapter 1 asks, Why is it so hard to understand that the person has died and is gone forever? Cognitive neuroscience helps me to address this question. Chapter 2 asks, Why does grief cause so many emotions—why do we feel such strong sadness, anger, blame, guilt, and yearning? Here I bring in the theory of attachment, including our neural attachment system. Chapter 3 builds on the answers in the first two chapters with a follow-up question: Why does it take so long to understand that our loved one is gone forever? I explain the multiple forms of knowledge that our brain holds simultaneously to think through this puzzle. By chapter 4, we have enough background to dig into a primary question: What happens in the brain during grief? However, to understand the answer to this question we also consider: How has our understanding of grief changed over the history of bereavement science? Chapter 5 looks with more nuance at why some people adapt better than others when they lose a loved one, and asks, What are the complications in complicated grief? Chapter 6 reflects on why it hurts so much when we lose this specific beloved person. This is a chapter about how love works, and how our brain enables the bonding that happens in relationships. Chapter 7 addresses what we can do when we are overwhelmed with grief. I rely on clinical psychology to delve into answers to this question.

In part II we turn to the topic of grieving, and how we might go about restoring a meaningful life. Chapter 8 asks, Why do we ruminate so much after we lose a loved one? Changing what we spend our time thinking about can change our neural connections and increase our chances of learning to live a meaningful life. Turning from focusing on the past, however, leads us to the question in chapter 9, Why would we engage in our life in the present moment, if it is full of grief? The response includes the idea that only in the present moment can we also experience joy and common humanity, and express love to our living loved ones. From the past and present, in chapter 10 we turn to the future and ask, How can our grief ever change, if the person will never return? Our brain is remarkable, enabling us to imagine an infinite number of future possibilities, if we harness this ability. Chapter 11 closes with what cognitive psychology can contribute to our understanding of grieving as a form of learning. Adopting the mindset that grieving is a form of learning, and that we are all always learning, may make the winding path of grieving more familiar and hopeful.

Think of this book as having three characters. The most important character is your brain, marvelous in its ability and enigmatic in its process. It’s the part of you that hears and sees what happens when your loved one dies and that wonders what to do next. Your brain is central to the story, built from centuries of evolution and hundreds of thousands of hours of your own personal experience with love and loss. The second character is bereavement science, a young field full of charismatic scientists and clinicians, as well as the false starts and exciting discoveries of any scientific endeavor. The third and final character is me, a griever and a scientist, because I want you to trust me as your guide. My own experiences of loss are not so unusual, but through my life’s work, I hope you may see through a new lens how your brain enables you to carry your loved one with you through the rest of your life.

Complete Article ↪HERE↩!

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“Microdosing helped me come to terms with my own death”

Doctors don’t understand why I’m still here. I think the peace of mind psilocybin has given me is a huge part of it

By

Who: Andrea Bird, a 60-year-old artist and former art educator based in Caledon

Treatment: Psilocybin microdoses, one to three times a year

My husband, Daniel, and I ran an art school for years at the Alton Mill Arts Centre in Caledon. In 2012, I went for my first mammogram, and they found a large tumour in my right breast. I was diagnosed with Stage 2 cancer. I felt shocked and confused. I had surgery, followed by chemo, followed by radiation. That took about a year, and then I was told, “You’re cancer free. Go live your life.” And so I did.

About four years later, my cancer had metastasized to my bones and lungs, and last summer, it spread to my brain as well. I was diagnosed with Stage 4, which is terminal. My doctors and I were now talking about end-of-life plans. The estimated timeline is about two years, according to my husband’s research. I was not so keen to have a date floating around, so I left that part of the process to him. It was really challenging for me to wrap my brain around mortality, and I tried antidepressants but they didn’t help much. I had all this internal turmoil, thinking, How do I want to spend this time? I wanted my days with the people I love, in ways that were nourishing for all of us.

At the time, Daniel was reading Michael Pollan’s book, How to Change Your Mind, which is about how psychedelics can be used in therapeutic treatments for PTSD, addiction, trauma and end of life. I read the chapter on psilocybin and told my husband I wanted to try it. I had never done anything like this before and was always very cautious about those kinds of things, but I thought it might be helpful. Dying had pushed me to the edge of my capacity to cope.

I mentioned psilocybin to a friend, and they told me they knew someone who could help—a guide of sorts. It felt like the universe was aligning because I had no idea how to do it or how to access the drug. Everything fell into place extremely easily and I thought, Andrea, life is giving you the opportunity to try this. Do you have the courage to do it?

I had a lot of conversations about what to expect with my guide. They’re not a doctor, but they’ve researched psychedelic medicine and are extremely knowledgeable. I quickly realized that I was in good hands. They asked me, “What do you want to get out of this? What are your fears?” I hoped to come to terms with death and dying. I also wanted to know what I could let go of. Like preparing to climb a mountain, I wanted to lighten my load and only take what was essential.

I had my first trip in December of 2018. My guide boiled three and a half grams of mushrooms in hot water with lemon and ginger. I was sitting at home, and Daniel went out with our pets. The guide had Daniel’s phone number if they needed him. I sat in a reclining chair with eye shades and headphones, playing a psilocybin playlist on Spotify made by the team at Johns Hopkins University, a leader in psychedelic therapy research.

I started to feel the effects in half an hour, a full spectrum of emotions: gratitude toward Daniel, then sadness that I was dying, and then a deep realization of how fortunate I had been. It helped me to come to terms with my reality. I recognized that being sad and grieving for my life was not a problem. Because if I didn’t love life so much, then there wouldn’t be that sadness.

It also helped me to understand that life is a gift that we get to have for a little while, and then we have to give it back. On my first trip, my death showed up as a physical form in my mind’s eye. You know when you’re running a relay race and you’re carrying the baton, and your friend up ahead is waiting for you to pass the baton into their hand? Their hand is in the ready position, they’re crouched over with their arm outstretched behind them. That’s what death looked like. Death was the hand waiting for me to pass the baton to it, and the baton was my life. And death wasn’t in any hurry. But it was there. And it’s there for everybody. At some point, everybody has to part with their life. I don’t want to die. I don’t want to give up this beautiful life. I don’t want the people I love to have to grieve for me and all of that. But that’s just the nature of life. It’s not personal. This is how it is.

I did another trip a year later to see if there was anything else I needed to understand and I got this resounding message: You’ve got this. You’re as okay as you can be in this situation. The second trip confirmed the realization I was edging towards: death is not separate from life, deep despair and grief are not separate from wholehearted love and joy.

Since then I have microdosed off and on, under my guide’s advice. I would take tiny amounts, like one tenth of a gram, grind up the mushrooms, and put it on toast. There was no psychedelic effect at all. Rather, microdosing upped my capacity to deal with the emotional waves that were hitting me at that time.

Last summer, through TheraPsil, a Victoria-based advocacy group, I got an exemption from the federal government to take psilocybin legally. When I got the exemption, I felt such a relief. I know psychedelic therapy is all relatively new, but it feels like it’s overdue because it’s so effective. I haven’t microdosed for months now but it’s good to know it’s an option.

I want to help de-stigmatize and demystify some of the concern that comes with this drug and advocate for legalization. It’s possible to get an exemption, but why should dying people have to deal with yet another obstacle during this time when they’re doing everything they can to wrap their brain around dying? People should be made aware that psilocybin is an option, whether they choose to take it or not. And if they choose to, the process should be effortless for them.

Taking psilocybin was the most helpful thing I did in the last four years in coming to terms with my own death. I’m currently on a cancer regimen that involves a monthly injection, morphine for pain and all kinds of other drugs to treat the side effects of opiates. But I mostly feel like myself. I’m still in pain and get tired easily, but with the energy I have, I am painting, reading poetry, listening to music, dancing and visiting with dear friends. The doctors don’t understand why, four and a half years later, I’m still here, feeling as well as I do. Clearly the treatment plan I’m on is working. That’s part of it, but I think the peace of mind psilocybin has given me has been huge.

Complete Article ↪HERE↩!

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What “Shared Death Experiences” Are

& Why We Need To Discuss Them

By William Peters, MFT

As an end-of-life therapist and researcher, I have long known that American culture has an uneasy relationship with death. We have been taught to “fear” death and dying. Fitness regimens, diets, and cosmetic procedures tout themselves as being able to “turn back the clock.” Medicine is even more uncomfortable with life’s end: Beating death is often presented as the ultimate goal. Aggressive measures to prolong life are viewed as a testament to our love for another person.

This relentless effort to fend off death is confounding when one considers that opinion polls consistently find that the majority of Americans believe in a benevolent afterlife. It would appear that the public interest in the mysteries that surround life’s end is far more extensive than our institutions would suggest.

Why we don’t feel comfortable discussing shared death experiences.

Much of my work centers on the transition from life to death, specifically “shared death experiences” where the living report a connection with the deceased around the time of their death. I’ve overwhelmingly found that this connection involves a clear sense that their loved one has moved on to a better place. In more than 50% of the cases that I have studied, experiencers even report accompanying their friend or loved one part way on their journey out of earthly life.

Knowledge of this transition space is an open secret in palliative and hospice care. We know that many terminally ill patients also report being aware of or seeing deceased family members, friends, and even pets, in the room with them, coming to help usher them out of this world. Some shared death experiencers also see or sense these figures as well.

Yet, again and again, shared death experiencers tell me that they feel uneasy discussing this subject with their health care and spiritual care providers. Their concern is valid, as one study found that 80% of patients who had sensed the presence of a deceased and shared it with their therapist felt dissatisfied with their counselors’ responses. They either did not feel understood, or they felt dismissed.

It wasn’t always this way.

One of the earliest written works on end-of-life care is the medieval text Ars Moriendi or “Art of Dying,” which was utilized in Catholic monasteries in Europe. Not only does it contain information on prayers, music, and pain remedies, as well as guidance on managing mental and emotional distress among the dying, but it is surprisingly ecumenical, drawing guidance from Catholic, Celtic, Jewish, and even Islamic traditions. Its underlying message is that dying is a spiritual experience and that it is possible to die well and be comforted. However, in our own era, there has been a strong reluctance to discuss what makes a good death or to openly explore what happens to us when we die.

In our own era, there has been a strong reluctance to discuss what makes a good death.

Speaking of her own shared death experience, Stephanie, a woman in Washington, D.C., whose husband died of aggressive cancer, recalled traveling with him into an incredibly bright, white light. She said, “There was no pain, no hurt. It was peaceful,” adding, “It felt as if I were going back to something I already knew.” But her own clergy shut down any conversation, and “that deflated me terribly,” she said. Finally, an oncologist told her that he’d had a similar experience. He told her this, however, after closing the office door and stating he would never share his experience with anyone else.

I believe that these hushed discussions could be the very things we need to help both the dying and the bereaved. Listening to and examining stories of individuals who have had shared death experiences can offer us another framework in which to process and accept death.

Consider the story of Carl, a California man whose father died of heart failure in Massachusetts. He experienced an overpowering sensation of being next to his father, saying “I could feel it in my bones and my cells that my dad was there with me.” While the experience did not end his grief, it changed his perspective. “I miss my dad,” he told me, adding, “and I wish I could call him up and be with him and spend time with him. I grieved and was sad, but it doesn’t feel like a tragedy. It feels like he is in the place he needs to be.”

Indeed, of the nearly 1,000 cases I have studied, 87% of the people interviewed report that their experience has convinced them that there is a benevolent afterlife. Nearly 70% said their shared death experience has positively affected their grief, and more than 50% said that it has removed their own fears around death and dying.

The takeaway.

In the last two years, the pandemic has resulted in a wave of death among people we know and love. Perhaps now, together, we can start a new conversation—one that is willing to include the voices of shared death experiencers. With their heartwarming stories, we may be able to transform our relationship with death from one of resistance and fear to that of acceptance, ease, and wonder of this great mystery that we will all one day embark on.

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Every Adult Should Have an Advance Directive

Despite Recent Well-intended but Misguided Advice to the Contrary

The Sirens and Ulysses by William Etty, 1837

By Richard B. Stuart DSW, ABPP, Stephen J. Thielke MD, George Birchfield MD

Living wills are often the precursors to ADs. More advanced living wills, like the 6-Steps Living Will, help patients clarify their values and formulate personal statements that provide context for treatment decisions. Such instruments express patients’ preference for quantity versus quality of life, the scope of treatment the desire, i.e. aggressive, limited, or comfort care. and which treatments they want to undergo if their quality of life falls below a specified standard. They also include the appointment of an agent who fully understands the patients’ wishes and can serve as an advocate if necessary. These requests are then translated into medical orders that are scanned into electronic medical records. This is very different than being tied to a mast.

Despite the promise of ADs, reliance upon dichotomous “always/never” choices is one major conceptual problem limit in the most commonly used forms such as the POLST. The problem is that life often does not fit into black or white choices. Imagine the following situations.

55 year old Harold has a POLST that stipulates no CPR because he wants to avoid the rigors of a prolonged painful death. But while gardening, he is stung by eight wasps and suffers anaphylactic shock from which he will die unless resuscitated. Should he be allowed to die by following the order? Or should his wishes be over-ridden by an emergency responder who does not know him but believes that CPR could reverse his condition with good effect? The first option creates a moral problem, the second an ethical problem.

75 year-old Edith has a POLST that stipulates that she does wants to undergo CPR. She has just been released from the hospital following a trial of a fourth intravenous cancer drug being administered for an incurable cancer. Due to a medication error, her breathing stopped long enough to result in a high probability of irreversible brain damage. Her surrogate is aware of her desire to undergo CPR if she could return to her prior level of functioning, but not if she would be permanently immobilized and attached to a ventilator. Should caregivers condemn her to a fate she dreaded because of a medical error in accord with her POLST, or should they decide to ignore the order and allow her to die? This time the ethical and moral risks are reversed.

These cases are medically straightforward but ethical and moral issues arise because the orders are incomplete: they do not provide enough information to allow others to make appropriate choices for the patient who is silenced by a crisis.

In both life and medicine, many decisions are more wisely construed as “Always, Sometimes, or Never” choices. Although the POLST denies this realistic option, other tools allow it. The attached Conditional Medical Order (COM) was developed to account for the middle ground. Both Harold and Edith could have stipulated that they wanted CPR on the condition that it would overcome a reversible condition and restore them to their prior quality of life. They could also have stipulated that they wanted to be resuscitated regardless of the circumstances, or that they want to be allowed to die if their heart stops beating for any reason. The POLST leaves the decision in the hands of others who may not know patient’s references in these unforeseen circumstances: the COM allows patients to retain effective control over the care they receive and allows providers to make ethically and morally responsible decisions consistent with patients’ desires.

Nothing in healthcare is perfect. By selecting the “sometime” option, patients do delegate to providers the authority to use clinical judgment to decide whether resuscitation is in the patient’s best interest. But if guided by an awareness of patients’ values, and ideally in collaboration with surrogates, providers can make medically informed decisions about the likely impact of prolonging the patient’s life that accord with what the patient would have chosen.

The standard COM stipulates patients’ preferred scope of treatment, and includes orders for resuscitation, oxygenation, and artificial nutrition and hydration. It can be expanded to include other procedures such as surgery, dialysis, use of antibiotics, hospital transfer, and/or medical aid in dying if legal standards are met. Because it is a medical order, patients must have sufficient capacity to understand it, and it must be signed by a physician, nurse, or certified physician’s assistant. All patients can request a COM which is far the strongest option currently available to allow them to maintain control over one of the most important decisions they will ever make.

An editable COM can be downloaded without charge from: Stuart RB, Birchfield G, Little TE, Wetstone , S, McDermott J. Use of conditional medical orders to minimize moral, ethical, and legal risk in critical care. Journal of Healthcare Risk Management. 2021;(1):1-12. DOI:10.1002/jhrm.21487

See, too: www.6stepslivingwill.org

Stuart RB, Thielke SJ. Standardizing protection of patients’ rights: from POLST to MOELI (Medical Orders for End-of-Life Intervention. Journal of the American Medical Directors Association. 2017 Sep 1;18(9):741-745. doi: 10.1016/j.jamda.2017.04.022. Epub 2017 Jun 13.PMID:28623154

Here is a sample of the way one patient personalized the COM in the words underlined —

Conditional Medical Order

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Who Are We Caring for in the I.C.U.?

By Daniela J. Lamas

We gathered as a medical team in front of my patient’s room early one Saturday. She was one of the sickest patients in the intensive care unit. Her lungs were destroyed by cancer and a rare reaction to her chemotherapy, and her condition worsened each day, despite aggressive interventions. It was clear that there was nothing more that we could do. Except to keep her alive until Monday.

Struggling to come to terms with this reality, her family had begged us to continue our interventions through the weekend. So we would keep her intubated, deeply sedated and, we hoped, pain-free, performing the rituals of intensive care until the family was ready to say goodbye.

There is a largely unacknowledged moment in critical care when doctors and nurses shift from caring for the patients in front of us to caring for their loved ones. Often these two aims are not inconsistent: Even when family members like these are not ready to stop life-prolonging interventions or ask for a treatment that is unlikely to work, they are speaking on behalf of the patient. But increasingly I wonder if it is possible to go too far to accommodate family. When a patient is at the end of life, what is our responsibility to those who will be left behind?

On another recent shift, I received a call from a colleague at a different hospital. He was caring for a patient in his 60s with severe respiratory failure after a coronavirus infection. The patient’s family was desperate for him to be transferred to our hospital, a larger institution with greater resources. But intensive care unit beds were a scarce resource, and there was no clear medical reason for the transfer. His team had already done everything that we would do, and the simple act of transferring someone so sick could be catastrophic. I was the critical care doctor on call, charged with accepting transfer requests, and it would have been easy to say no. But then there was the matter of his family.

The patient arrived overnight, just as sick as we expected. His oxygen levels had dipped in the move and never recovered. Standing outside his room the next morning, his wife asked me if I thought the transfer had been a mistake.

Maybe it was. Not because his numbers were worse; that was inevitable, regardless of the transfer. But because I had made the choice to bring someone to our hospital in large part so that his family members would believe they had done absolutely everything. Of course, family request alone is not a sufficient reason for a hospital transfer. And though I suspected that we would have nothing more to offer in terms of medical interventions, that was not possible to know with absolute certainty when the other hospital called. But perhaps even more important, I did not want his family to wonder what might have been.

And so the transfer was an act of caring for him, too, to leave his family without regret. I do not believe that we went against his wishes, sacrificed his dignity or caused him pain. When he died a few days later, it was peaceful, with his family at the bedside.

But that’s not always the case. Not infrequently a family will demand that doctors perform chest compressions and shocks if someone’s heart stops, even though we are nearly certain it won’t help. I used to find myself infuriated by these conversations. On occasion I have used hospital policy to take the decision away from the family altogether. But maybe that is not the only response.

Some years ago, Dr. Robert Truog, a critical care doctor and ethicist at Harvard, published a provocative essay arguing that there may be a role for cardiopulmonary resuscitation if it is necessary for the family, even if it will not directly benefit the patient. He told the story of a chronically ill child with a dismal prognosis whose parents were unwilling to stop aggressive measures. During one hospital admission, the child’s heart stopped, and at the parents’ behest, the team moved forward with attempts at cardiopulmonary resuscitation. When the efforts ended and the child had died, the parents entered the room, surveyed the detritus of the cardiac arrest, the lines and the tubes, and surprised the medical team members by thanking them for doing everything. Dr. Truog wrote that even if it was futile from a medical perspective, what he had come to realize was that the procedure let the family members know that the doctors had tried. That was the way to give them a narrative they could live with.

I am still not sure what to make of this argument. We would not resuscitate patients against their stated wishes, regardless of what their loved ones want. But in these moments, we are so often making decisions for both the patients in front of us and the people who will carry their story forward. And so maybe resuscitation attempts can be for a family just as much as or even more than they are for a patient. Maybe in some cases, that is justification enough.

But at the same time, I worry that even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that are just that: a performance. I wonder, too, whether this very scenario means that doctors have failed. Perhaps if we were clearer communicators, no family members would choose for their loved ones to undergo intensive treatments that only postpone the inevitable.

That Saturday in the I.C.U. passed quietly for my cancer patient. But when I returned on Sunday, I learned that her blood pressure and oxygen levels had started to teeter when the nurses turned her, as they did every few hours to prevent bedsores. The daily activities of critical care were beginning to cause harm. We had planned to wait until Monday to readdress goals with the family, but was that the right choice? I hoped my patient was pain-free but could not guarantee it. And perhaps it was unkind to allow her family to spend another day hoping she might improve when we knew that to be impossible.

We called in her adult children and told them that their mother was dying. They cried and questioned, and I asked myself whether I should have waited, but they ultimately understood. If there was no way that doctors and nurses could make their mother better, then they would focus on her comfort. They gathered by the bedside. We waited for a chaplain. And late that night, in the last of our many rituals, a nurse disconnected my patient from the ventilator, ensuring she had enough medications so that she would not struggle. It was a final act of compassion, at once for the patient, her family and for us, too.

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