Category: Quality of Life

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Which country is the best place to die?

Scientists ranked countries on their end-of-life care. The U.S. fared poorly.

By Ross Pomeroy

Key Takeaways

  • Researchers conducted an international survey to determine what constitutes good end-of-life care and which countries are the best at providing it.
  • They scored 81 countries, most of which earned a grade of “C” or below for their palliative care. The United Kingdom ranked first. The U.S. ranked 43rd.
  • Higher income, universal health coverage, and wide availability of opioids for pain relief were generally associated with better scores.

Death is an inevitable part of life — a mysterious climax that all humans face, evoking wonder and trepidation. That’s why dependable end-of-life care is so vital. While only some of us break bones, develop cancer, or catch an infectious disease, we all die eventually. To depart with dignity in relative comfort shouldn’t be a rare privilege.

Regretfully, new research published in the Journal of Pain and Symptom Management shows that many countries do not offer their citizens a good death.

Eric Finkelstein — a professor of health services at the Duke-NUS Medical School, Singapore, and the Executive Director of the Lien Centre for Palliative Care — led an international team of researchers to conduct a sweeping analysis of countries’ end-of-life (palliative) care. Finkelstein and his colleagues first set out to characterize quality end-of-life care, reviewing 309 scientific articles to determine the factors involved. A few that they identified included:

  • The places where health care providers treated patients were clean, safe, and comfortable.
  • Health care providers controlled pain and discomfort to patient’s desired levels.
  • Health care providers provided appropriate levels and quality of life extending treatments.
  • Costs were not a barrier to a patient getting appropriate care.

The researchers settled on 13 factors in total. They then surveyed 1,250 family caregivers across five different countries who had recently looked after a now-deceased loved one to ascertain the relative importance of each indicator. Here’s how the factors ranked:

Credit: Finkelstein et al. / Journal of Pain and Symptom Management

Finally, the researchers sought out hundreds of experts from 161 countries to rank their respective country’s end-of-life care based on these weighted factors, asking them to “strongly disagree, disagree, neither agree nor disagree, agree, or strongly agree” with whether their country’s healthcare system generally met each palliative need. To be eligible, experts had to be “either 1) a representative of the national in-country hospice-palliative care association or similar national professional association with an established leadership role, 2) a health care provider (physician, nurse) involved in provision of palliative care, or 3) a government employee or academic with knowledge of palliative care in the country.”

At least two experts were required to respond from a specific country for the researchers to consider the nation’s score valid. In all, 81 countries comprising 81% of the world’s population ended up being ranked.

Credit: Finkelstein et al. / Journal of Pain and Symptom Management

The United Kingdom earned the highest score in the study, followed closely by Ireland, Taiwan, Australia, South Korea, and Costa Rica. These were the only countries to earn an “A” grade, scoring 90 or above. Ukraine, Argentina, South Africa, and Lebanon were a few of the 21 countries to merit an “F” grade, scoring 60 or below.

Finkelstein found the results disheartening.

“Many individuals in both the developed and developing world die very badly – not at their place of choice, without dignity, or compassion, with a limited understanding about their illness, after spending down much of their savings, and often with regret about their course of treatment,” he said in a statement.

Higher income, universal health coverage, and wide availability of opioids for pain relief were generally associated with better scores.   

Of note, the United States earned a “C”, ranking 43rd of the 81 countries with a middling score of 71.5. Commenting on why the U.S. ranked so poorly, especially compared to other high-income countries, Finkelstein said that Americans often spend tons of money on excessive, often futile treatments and surgeries aiming to extend life at the dusk of one’s existence — sometimes just for weeks or months — rather than focusing on ensuring quality of life at the end.

A key drawback of the study is that each country’s ranking was determined by an average of only two experts. While the researchers made clear that these experts are quite knowledgeable and respected, it seems hardly fair to rate an entire country’s end-of-life care system based on the opinions of just two individuals, each of whom is undoubtedly biased by their own experiences.

The experts were also asked for their thoughts on what facilitates good end of-life-care in a country. Collectively, they suggested that investment from the national government, patient-centered, integrative care, and universal healthcare with free access to palliative care services contributed greatly.

Complete Article ↪HERE↩!

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At peace: Positive attitudes about death improve end-of-life care

Changing the way we think and talk about death could improve end-of-life health care. Recent research suggests encouraging people to view death differently, as a positive and natural part of life, it could help them make better decisions as they prepare for what is inevitably to come.

For many people, especially if someone has recently experienced loss, giving up the ghost is one of the most taboo topics. This is indicated in the words people choose to use when describing their feelings and insights into death or dying, researchers say. People who are not comfortable with the topic are more likely to choose emotional words such as “fear or scary,” whereas those who are more ready to meet their maker will use terms like “inevitable or natural.”

“In an aging population, when our elders and terminally ill are often cared for by health professionals in residential care rather than in the home, we can go through life without really discussing or witnessing the end of life. Tackling and changing these perspectives will help the community to plan for and manage future needs and expectations of care at end-of-life, and improve patient and family care, including greater preparedness for death. This can also help develop future health services,” says Dr. Lauren Miller-Lewis, study lead author of Flinders University in Australia, in a statement.

In a recent study, researchers surveyed 1,491 people to determine what language they used to describe their feelings when it came to dying. Participants were then enrolled in a six-week open online course dubbed Dying2Learn. The course, which ran from 2016 to 2018 and in 2020, encouraged people to have open conversations about death and dying.

The language participants used when discussing death before and after the course was analyzed using automated sentiment analysis. By the end of the course, participants were able to use more pleasant, calmer and in-control words to express themselves on the topic, researchers say.

“Words aren’t neutral, so understanding the emotional connotations tied to words we use could help guide palliative care conversations,” says Dr. Miller-Lewis. Younger participants showed the greatest increase in positive vocabulary, including pleasantness and dominance over the topic.

“It shows how the general public can gain an acceptance of death as a natural part of life by learning how to openly discuss and address these feelings and attitudes,” adds co-author Dr. Trent Lewis.

Differences in how participants talked about death with others rather than just explaining their own feelings were also observed by the researchers. When talking about someone else’s loss, participants were more likely to use words such as “sad,” “fear,” scary and loss. However, when it was about themselves they employed less emotionally negative words like “inevitable,” “peace,” and “natural.”

“The assumption was that others feel more negatively about death than they do themselves. This could impact on our willingness to start conversations about death with others,” says Dr. Lewis. “Do we avoid it because we think others will get upset if we bring it up, and does this then leave important things unsaid?“

The findings are published in the journal PLOS One.

Complete Article ↪HERE↩!

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End-of-life conversations may be helpful to patients and families

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?

In 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 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. A key need of people who know they are dying is tending to relationships with people who matter 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. People “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.”

Chochinov’s search to understand why some people feel despair at the end of life while others do not led him to countries such as 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 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 honor, 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 nine questions 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 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.’ ”

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 on dignity therapy, and more studies are ongoing. The largest 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 her 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 the 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, of 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, Miguel Julião, a Lisbon physician, and his colleagues conducted a much smaller trial in Portugal in which dignity therapy did reduce demoralization, desire for death, depression and anxiety.

Julião thinks the different outcomes reflect differences in the patient groups: His study focused on people experiencing high levels of distress, while Chochinov’s did not.

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.”

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, they created a posthumous therapy for surviving friends and family members. In a study of this survivor interview protocol, “we have wonderful, wonderful comments from people saying, ‘It’s like I’m here with him or with her,’ ” Julião says.

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

A primary barrier is time. The therapy 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 edits it into the legacy document. He says he has enthusiastic responses from clinicians and social workers attending the lectures and workshops he has conducted. “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 organization 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.

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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My dad’s final days

By Ken Dychtwald, Ph.D.

I grew up in the 1950s and ’60s in a mostly blue-collar community in Newark, New Jersey. My father, Seymour, was a fiercely hardworking guy who wanted to be successful. For him, work wasn’t about “finding his bliss,” it was about being a responsible husband and father. His dad had skipped out on him, his siblings and mother for almost 10 years during the Depression. In contrast, my dad was a reliable family man and wanted our family to live the American dream.

Ultimately, Dad rose from selling clothing and home furnishings out of the back of his truck to owning and operating a successful chain of women’s clothing stores. In their mid-60s, my folks retired and relocated to Florida.

Throughout my life, Dad and I had a loving but feisty relationship. He was very opinionated (I guess I am, too) and was skeptical of many of my lifestyle and career moves—from moving to California, from studying physics to the field of psychology and then to gerontology. But he had great love for my family and he eventually developed a deep respect for what I made of myself.

In the 1990s, my father started to lose his vision and with it, control over much of his life. Sadly, Alzheimer’s was also chiseling away at my mother’s mind. Dad loved Mom so much that he railed against the dissolution of her memory and her mind. He got depressed and angry.

“If I die before Mom, she’ll struggle terribly, and if she dies before me, I’ll go crazy. Just as we’ve lived together, we want to die together,” he said. That was quite a lot for me to digest.

One night, he asked me, “If I take my own life and Mom’s, would that be brave or cowardly?”

I said, “I don’t know, Dad. If I was in your situation, I can’t imagine what I’d think or do.”

So, for almost a year, every night I’d go to sleep not knowing if my parents would be alive in the morning.

In 2013, my brother Alan called me in a state of distress to report that our dad’s blood sugar was going haywire. And to make things worse, he’d lost his balance and fallen on his face, giving himself a big gash on his forehead. Alan was already on his way to Florida. I packed my bags and headed east.

Dad’s doctor admitted him to intensive care. He had internal bleeding and had suffered a heart attack. When he realized that his boys were there for him, he called out to us: “What’s going on? Get me out of here!”

Dad settled down a bit, and Alan and I went to see our mom. Later that night, the phone rang. It was Dad pleading with us to rescue him. 

We shot back to the hospital and went into our anguished father’s room. His arms, chest, face and hair were covered with blood because he kept pulling out his IV lines. In the morning, after a torturous night for both my dad and brother, and a sad night for me and for my confused mother, I returned to the hospital. Alan and I asked: “Dad, what do you want?”

“I’m scared,” he said, “but I know this: I’ve lived my whole life on my own two feet, and I’m not going out on my hands and knees. Please help me bring this to an end.”

Shortly after, Alan and I met with Dad’s physician. He was a kind and decent man who asked us if we wanted our dad to remain in intensive care or if we preferred to shift him to hospice car
Were we going to battle to keep Dad alive for a few more days, albeit in a ghastly, ghoulish fashion? Or were we prepared to make him comfortable and allow him to die a good death? 

What would he want us to do?

We had Dad transferred to the hospice floor, where the nurses and aides removed all the wires and tubes, lovingly sponged all of the blood off him and even gave him a shave and combed his hair. They asked him what his favorite music was and then put on Frank Sinatra.

Next, they began a low dose of morphine to ease his anxiety. My wife and kids all dropped what they were doing to fly to Florida and be with him.

As I contemplated the end of my father’s life, I reflected that even though we had often butted heads, there was not one instance in my entire life when he wasn’t there for me when I truly needed him.

I wanted to show Dad proper respect and kindness, but not knowing how I should handle the situation with my dad nearing his death, I called one of my closest friends, Stuart Pellman, who had already dealt with the death of both of his parents.

He wisely told me, “Get one-on-one time with your dad. Even if he’s unconscious, tell him you love him, ask him to forgive you for anything you may have ever done to trouble him. Tell him you forgive him for anything he might have ever done to upset you, and then tell him you’ll always remember him.”

And that’s what I did.

Dad and I held each other for a long while, and then I left the room and allowed my brother some privacy to do the same.

Later that night, after the other members of my family had gone home, I joined my dad for a very intense and private conversation.

I said, “Dad, you’ve never asked me what I think happens when a person dies.”

“I’d like to know what you think about that, Kenny,” he responded. “Because I’ve begun to see my brothers and sister and they’re reaching out to me.”

My dad had no religious beliefs, but I had some. So I said, “Dad, I don’t know this for sure, but I believe when a person passes, there is another plane that presents itself. In that place are all the people you have known and loved.”

As I began to describe this, he started to cry. Then he turned toward me and told me he was ready.

I asked him if I could record the rest of our exchange on my phone so I could always have it to watch when I missed him. He said okay, and this is what transpired:

Ken: “Dad, you know that what’s going to be next is going to be beautiful and your vision’s going to be back and you’re going to be a young man again.”

Dad: “I’m ready for that, Kenny.”

Ken: “And you know we all love you, and you’ve always loved us.”

Dad: “I know it, Kenny.”

Ken: “So, what you’ll need to do is let go and not worry about anything because everything is going to be looked after. All we need is for you to be relaxed and calm and just drift off into the white light. Can you do that, Dad?”

Dad: “Absolutely.”

Ken: “I love you, Pops.”

Dad: “I love you, Kenny.”

My father died peacefully that night. With help from all of us, he went out on his own two feet.

Ultimately, even with all his frustration and anger, my dad died a good death. At the end, his pain was minimal. His mind was calm. He found a way to think about leaving his body as not being frightening. And although he had been blind for years, at the very end, he began to describe beautiful waterfalls, flowers, birds and castles.

When my time comes, I hope that my wife Maddy will kiss me goodbye and at least one of my kids—maybe even both—will be there to lovingly guide me out of my body.

Complete Article ↪HERE↩!

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My father asked me to kill him

– As we age, more of us will face questions over assisted dying

A young Professor Luke O’Neill (centre) with his father before his stroke and his sister Helen

The immunologist Professor Luke O’Neill, author of ‘Never Mind the B#ll*cks, Here’s the Science’, reveals how his father asked for help in ending his life after a stroke, and reflects on how legal euthanasia works around the world

By Professor Luke O’Neill

My father asked me to kill him. He was 74, had suffered a stroke at 71 and couldn’t speak properly. He also had paralysis on his left side. He was a widower in a nursing home. We had tried home helps who came in every day, but he was also severely depressed, which made things difficult. He would say to me in his slurred voice: “You work in a lab. You have the chemicals to do it.” He also regularly said, “If I were a horse, you’d shoot me.”

My father, Kevin O’Neill, had a dark sense of humour, so I used to brush these conversations, but I knew he meant it. I would sometimes cry when I left him in his room, his own separate hell.

Should I, out of sympathy and love, have bumped him off? That would have been murder. But what if the law had allowed me to help him die? How would that have worked and would I have had the guts to do it?

Will a time come when euthanasia will be as routine as childbirth, as we head towards a population where the majority are sick and old, with lots of older people actually wanting to die? Or will the discovery of new treatments for diseases and better palliative care make euthanasia unnecessary?

The topic has been widely discussed in the UK again recently, with the Assisted Dying Bill being debated in the House of Lords. We must face this topic head-on.

Prof Luke O'Neill is an Irish immunologist (Photo: Ruth Medjber)
Prof Luke O’Neill is an Irish immunologist

Active euthanasia is legal in Belgium, the Netherlands, Luxembourg, Colombia and Canada. Assisted suicide is legal in Switzerland, Germany, the Netherlands, the State of Victoria in Australia and the US states of California, Oregon, Washington, Montana, Washington DC, Colorado, Hawaii, Maine, Vermont and New Jersey. It is illegal in all other countries, as is non-voluntary euthanasia (where the patient is unable to give consent).

Although legal in the countries mentioned above, it is only allowed under certain circumstances and requires the approval of two doctors and in some places a counsellor. Treatment or medical support being withdrawn because it is considered futile will also hasten death but is not illegal.

The Lords Select Committee on Medical Ethics defines euthanasia as “a deliberate intervention undertaken with the express intention of ending a life to relieve intractable suffering”. Yet in the Netherlands and Belgium it is defined slightly differently as “termination of life by a doctor at the request of the patient”. It doesn’t necessarily have to involve the relief of suffering, which is an important distinction.

The medical understanding of suffering can be hard to pin down. Does psychological suffering count, and how would that be measured? Perhaps the Dutch and Belgians have simplified the definition for that reason.

A historic case of euthanasia in the UK happened in 1936 when King George V was given a fatal dose of morphine and cocaine to hasten his demise from cardio-respiratory failure. This wasn’t made public until 50 years later. But it suggests that euthanasia might not have been so rare in Britain’s past.

Questions about euthanasia will come up more as the population ages. The debate centres on four issues: the right of people to choose their fate; that helping someone to die is better than leaving them to suffer; that the ethical difference between the commonly practised “pulling of the plug” and active euthanasia is not substantive; and that permitting euthanasia will not necessarily lead to unacceptable consequences. This is the case in the Netherlands and Belgium.

Professor Luke O'Neill's father, Kevin (Photo: Luke O'Neill)
Professor Luke O’Neill’s father, Kevin

On consent, perhaps the person is not able to make the decision – determining competence is not straightforward. Perhaps they feels that they are a burden on medical services or on their family. How do we know unscrupulous friends or relatives aren’t pressuring them? Do hospital personnel have an economic incentive to encourage consent?

There seems to be a growing acceptance of euthanasia in the UK. In a 2019 survey of 2,500 people, more than 90 per cent believed that assisted euthanasia should be legalised for those suffering from a terminal illness. Eighty-eight per cent believed that it was acceptable for people living with dementia, provided that they consented before losing their mental capacity.

In another survey, 52 per cent would feel more positive towards their MP if they supported assisted dying, compared to 6 per cent who would feel more negative.

So what concerns people, apart from religious beliefs?

Guidelines and safeguards are important. Physicians and counsellors are all involved in assessing people requesting euthanasia in countries where euthanasia is practised. In the US, Canada and Luxembourg, the person must be over 18. In the Netherlands, the age is 12, while in Belgium there is no age limit as long as the person has the capacity for discernment.

In the US, there is no need for unbearable pain or any symptoms. In the Netherlands, Belgium and Luxembourg, patients must have “unbearable physical or mental suffering” with no likelihood of improvement, although the person doesn’t have to be terminally ill.

There is a danger that people with severe long-standing depression might want to have their life ended if they are terminally ill. This might be difficult to evaluate, as many with a terminal illness may also be clinically depressed.

In the US, assisted suicide must involve a 15-day period between two oral requests, and a 48-hour waiting period after a final written request. In Canada it’s 10 days and in Belgium it’s one month. The Netherlands and Luxembourg do not have any waiting period.

Across all places where it is legal, around 75 per cent of people who undergo assisted suicide are suffering from terminal cancer. The next-highest condition on the list is motor neurone disease, at 10–15 per cent. Pain is not that common as a motivating factor, with issues such as loss of autonomy and dignity being more important.

The bottom line is that euthanasia, when properly regulated, can give us hope of a better quality of death. We must also strive for scientific advances in bringing better treatments or palliative care for those who suffer.

When I think about the rights and wrongs of euthanasia, I think about Christian de Duve, a famous Belgian biochemist who won the Nobel Prize in 1974 for the discovery of the lysosome. This is the garbage disposal system for cells: it destroys parts that are old or worn out and can digest a cell whole when it becomes old or damaged. Lysosomes are a bit like a euthanasia machine for the cell.

Christian died by euthanasia in Belgium at the age of 95, suffering from terminal cancer. De Duve wanted to make the decision while he still could and not to be a burden on his family. Christian spent the last month of his life writing to friends and colleagues to tell them of his decision. In an interview published after his death, he said he intended to put off his death until his four children could be with him. He was at peace with his decision, saying, “It would be an exaggeration to say I’m not afraid of death, but I’m not afraid of what comes after, because I’m not a believer.”

The second person on my mind when I think of this topic is my father. During the winter of 1995–6, Dad suffered several bouts of pneumonia, almost dying on one occasion. In January of 1996 his GP asked to see me. He suggested that perhaps he wouldn’t prescribe another course of antibiotics and would see if my Dad could fight the latest bout on his own. I knew what he was saying by the way he looked at me.

My dad died peacefully of pneumonia (or ‘the old man’s friend’ as he used to call it) in his sleep on 20 February 1996, with me sitting beside his bed, holding his hand. Not a bad way to go, Dad.

Complete Article ↪HERE↩!

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Psychedelics Could Be New Frontier in End-of-Life Care

By Jim Parker

Psychedelic medicines may represent a new frontier for end-of-life care, as well as psychiatric treatment. While these substances — including LSD, MDMA, psilocybin and ketamine, among others — remain illegal, grass roots support for decriminalization or medical use is growing. Meanwhile, venture capitalists and other investors are spending billions to get on the ground floor of what could become a new health care industry. 

Much of the research and discussion on medical use of psychedelics has focused on care at the end of life. Interest in the potential medical benefits of these substances became widespread during the 1960s, but research all but stopped after they were criminalized through federal legislation in 1970. The first inklings of a resurgence began in the late 1990s, and momentum has picked up during the last decade.

“The evidence is just so compelling, and we have very little in terms of tools in our medical bag to be able to help people who are suffering from existential distress, anxiety and depression related to a serious illness diagnosis,” Shoshana Ungerleider, M.D., internist at Crossover Health in San Francisco, founder of the organization End Well, said. “We want people to be able to live fully until they die. If psychedelics given in a controlled therapeutic environment with trained clinicians who can help them do that, then these medicines should be more widely available.”

End Well recently produced a conference on the subject of psychedelic medicine for dying patients.

The body of scientific literature on psychedelics for dying patients continues to advance. Johns Hopkins Medicine in 2019 established a Center for Psychedelic and Consciousness Research backed by $17 million in grants.

Researchers have identified a number of clinical benefits, including reduction of anxiety, depression and improved acceptance of mortality, according to a 2019 literature review in the journal Current Oncology. The paper cited studies indicating that the most commonly used psychedelic drugs have no tissue toxicity, do not interfere with liver function, have few interactions with other medications and carry no long-term physical effects. Common side effects tend to be short in duration, such as nausea and vomiting or disruption of visual or spatial orientation.

Patients who use psychedelic medicines often report what researchers commonly describe as a “mystical experience,” involving a feeling of unity, sacredness, deeply-felt positive mood, transcendence of space and time, and other effects that study participants found difficult to verbalize, according to the Current Oncology paper. 

“This can be transformative for people with anyone who is wracked with trauma, grief, loss or extreme states of suffering,” Sunil Aggarwal, M.D., co-founder, co-director and practitioner at the Advanced Integrative Medical Science (AIMS) Institute in Seattle, told Hospice News. “There’s also evidence that these substances can also reduce physical pain.”

Aggarwal is a board-certified hospice and palliative care physician and a past chair of the American Academy of Hospice and Palliative Medicine (AAHPM).

All psychedelics are illegal at the federal level and in most states. Oregon in 2020 became the first in the union to remove criminal penalties for all illegal drugs and is now in the process of establishing the nation’s first state-licensed psilocybin-assisted therapy system.

More action has been happening at the local level, with communities such as Washington, D.C., Denver, Ann Arbor, Mich., three Massachusetts cities, and Santa Cruz and Oakland in California voting to decriminalize some psychedelics and permit medical use. Some of these regions are now considering statewide decriminalization.

Connecticut and Texas each have laws on the books that created work groups to study the medical use of psilocybin, MDMA and ketamine. Legislatures in Hawaii, Iowa, Maine, Missouri, Vermont and New York state are currently mulling decriminalization or medical use bills.

In late July, Rep. Alexandria Ocasio-Cortez (D-N.Y.) reintroduced an amendment to remove federal barriers to research the therapeutic potential of psychedelic substances. The U.S. House of Representatives quickly shot down the legislation, though it garnered more support this round than the previous time it was introduced.

“We quite a few years off from having enough trained therapists and a policy pathway for which these can be made more widely available in a controlled therapeutic setting,” Ungerleider said. “There’s just so much interest right now among patients and among family members to learn more about this. All health care professionals need to have an understanding of where we’re at with psychedelics.”

Interest in psychedelics has transcended the research space and entered the business world. The familiar adage, “follow the money,” frequently provides good indicators of which way the wind is blowing.

The psychedelics industry is expected to bring in more than $6.85 billion by 2027, Forbes reported. Many of these investors are seeking to reproduce the lucrative results of the cannabis industry that emerged in the wake of legalization among a number of states. A recent report indicated that 36 states and four territories allow use of medical cannabis products, according to the National Conference of State Legislatures.

The largest investors in psychedelics include the venture capital firms Conscious Fund, Explorer Equity Group and Pala Santo. Earlier this year, Florida-based cannabis and psychedelics attorney Dustin Robinson co-founded Iter Investments, a new venture capital group focused on that sector.

A United Kingdom-based psychedelics-focused pharmaceutical company, Compass Pathways (NASDAQ: CMPS), went public in Sept. 2020 and is now worth an estimated $1.2 billion.

“There’s a unique opportunity to be able to go ahead and develop and commercialize [psychedelics] to a much larger patient population,” health care investor and venture capitalist Andrew Lee told Hospice News. “It’ll be interesting to see how natural pharmaceuticals might work. There’s the nonprofit, sacred path, the pharma path and the botanical drug sort of path. The most important thing is that this is another tool in the toolbox for treating a number of conditions.”

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They watched their family members die.

Now they support medical aid in dying.

“It’s not just the pain, it’s the sense of isolation and aloneness and so on, which really can’t be assuaged by hospice.”

By Arianna MacNeill

When Mark Peterson thinks about his mother, Rhea, he thinks of the petite woman who loved to play golf, and enjoyed sitting down with a good book.

But another thing that Peterson recalls about his mother is her courage at the time of her death.

Because of the suffering and pain his mother endured, Peterson has become a vocal proponent for medical aid in dying, a way for terminally ill patients to choose to end their lives on their own terms.

State lawmakers are currently debating a bill that would legalize medical aid in dying in Massachusetts. The bill includes a variety of protections, including that the person must have a prognosis of six months or less to live, and go through a 15-day waiting period.

The initiative is already legal in a handful of states, including neighboring Vermont and Maine.

There are strong opinions both for and against the issue. Those in favor say laws in other states have worked the way they were intended. However, opponents are concerned that this will further burden the healthcare system, already taxed by the pandemic.

But behind the intellectual arguments for and against the issue are real people, like Peterson, who’ve faced the decline of a loved one and formed their opinion based on that sad reality. These are some of their stories.

A mother’s difficult choice

Rhea Peterson, who was born in 1907, began smoking cigarettes as a teenager – doctors at the time encouraged her to, she said. 

Throughout her life, Rhea had been hardworking. She became a copywriter, and she won awards, her son said. She raised four boys. She also wrote books for adults and children.

Rhea also beat breast cancer — she underwent a double mastectomy in the 1940s.

But at the end of her life, Rhea was robbed of the activities she loved.

At 75, she was diagnosed with chronic obstructive pulmonary disease, or COPD. 

Rhea quit smoking, her son said, “but COPD had its way with her, and basically she was no longer able to golf, and she got progressively weaker; she had to have what’s called an oxygen concentrator,” Peterson said. Using the concentrator meant she had to wear a nasal tube.

Rhea’s health continued to decline. Her vision started to go, and she began forgetting her medication. She also started becoming incontinent. 

She didn’t want to go into a nursing home, Peterson said.

“She couldn’t play golf, she couldn’t read as much, she couldn’t get out and get around, and she realized she was losing some of her memory,” her son said.

“In 1985, she said, ‘I want to die,’ and the brothers all kind of freaked out,” Peterson said. “We had no idea what to do with that.”

No state had medical aid in dying at the time — Oregon eventually became the first, in the mid-1990s — and end-of-life care hadn’t yet progressed to what it is today. The options for Rhea were limited, and in early 1986, she declared she was stopping all treatments. She had decided she would try to live into that year because she was told it would be better in terms of taxes on the inheritance.

The five days between when Rhea stopped her medications to when she passed were anything but peaceful. She struggled to breathe. There weren’t any painkillers.

“It was excruciating and gruesome,” Peterson recalled. Rhea was 78 when she passed.

For the past 11 years, Peterson, a retired psychologist, has dedicated his life to researching and teaching people about end-of-life options. He has also testified before the Legislature’s Joint Committee on Public Health regarding the state’s proposed medical aid in dying bill.

When faced with end-of-life options, loved ones often panic, and sometimes get confused about what their family member would want, Peterson said.

“The decision-making can sometimes end up being distorted and cause great pain,” Peterson said. “Probably the biggest single example of that is when a child says, ‘I’ll do anything to save mom,’ and at times mom is subjected to very intrusive, aggressive efforts to save her life.” 

End-of-life care and medical aid in dying

Thinking about today’s end-of-life care compared to what existed during the mid-1980s, Peterson agreed that it has improved, but sometimes palliative care needs to be about more than just treating pain.

“It’s not just the pain, it’s the sense of isolation and aloneness and so on, which really can’t be assuaged by hospice,” Peterson said. “People who get to the point where they’re sick of being sick and the indignities of not being able to wipe themselves, and endless pills, there’s so many ways that people get to the point and … they say, ‘I’m done.’”

Long before she passed away, Susan Lichwala’s mother made her promise that if she was ever in a state where she could no longer take care of herself and was being kept alive artificially, that Susan would request her mother be taken off life support.

Yet, in 2016, her mother, Lynne, was diagnosed with lung cancer — she had smoked throughout her life, Lichwala said. She started chemo, but with atrial fibrillation, or AFib, her heart wasn’t strong enough to tolerate it. She received radiation therapy, but it wasn’t enough to stop the cancer’s progress.

Toward the end of her life, Lichwala said she was clinging to being alive, but was no longer living. She died after a couple of weeks. Lynne’s care through hospice was excellent, Lichwala said, but being alive in that condition isn’t what she would’ve wanted.

“I know my mother would never have wanted to have been like that, yet there was nothing we could do about it,” Lichwala said, since the law didn’t allow for medical aid in dying. This despite the fact that, “There was absolutely no chance [that] my mother was going to live.”

Thoughts on the current bill before state lawmakers

Peterson noted that medical aid in dying shouldn’t be called suicide, saying that it’s a “very loaded negative term that’s used by people who oppose someone having the opportunity to end their life the way they would.” There’s also the stigma attached.

He does say, though, that the current bill covers things like preventing those who are depressed or suicidal from ending their lives.

Since both his parents have passed, Peterson said he’s dreamed about his dad, who died of a stroke when he wasn’t present; he wasn’t able to say anything to him before his passing.

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