Can Doctors Find Better Ways to Talk – and Listen – to Patients Close to Death?

Two brothers are combining palliative care expertise, linguistics and AI to encourage more effective conversations between doctors and people receiving end-of-life care.

Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?

By Michael Erard

One afternoon in the summer of 2018, Bob Gramling dropped by the small suite that serves as his lab in the basement of the University of Vermont’s medical school. There, in a grey lounge chair, an undergrad research assistant named Brigitte Durieux was doing her summer job, earphones plugged into a laptop. Everything normal, thought Bob.

Then he saw her tears.

Bob doesn’t baulk at tears. As a palliative care doctor, he has been at thousands of bedsides and had thousands of conversations, often wrenchingly difficult ones, about dying. But in 2007, when his father was dying of Alzheimer’s, Bob was struck by his own sensitivity to every word choice of the doctors and nurses, even though he was medically trained.

“If we [doctors] are feeling that vulnerable, and we theoretically have access to all the information we would want, it was a reminder to me of how vulnerable people without those types of resources are,” he says.

He began to do research into how dying patients, family members and doctors talk in these moments about the end of treatment, pain management and imminent death. Six years later, he received over $1 million from the American Cancer Society to undertake what became the most extensive study of palliative care conversations in the US.

The resulting database contains over 12,000 minutes and 1.2 million words of conversation involving 231 patients. This is the basis of the Vermont Conversation Lab, which Bob created to analyse this data and find features of those conversations that make patients and family members feel heard and understood.

Brigitte’s job in the lab that summer was simple: listen to moments of silence and categorise them. The idea was that they could indicate emotionally charged connections between doctor and patient. Once the silences were coded, they would be used to train a machine-learning algorithm to detect them automatically – and, with them, moments of emotional connection.

You might ask what place algorithms could possibly have in this sensitive realm. The reality is that healthcare communication needs help, especially in palliative care, where practitioners seek to bring patients to their deaths as meaningfully and painlessly as possible.

In 2014, the US Institute of Medicine made improving doctor-patient communication a priority in its landmark study, ‘Dying in America’. An analogous publication in the UK, Ambitions for Palliative and End of Life Care, emphasised the need for patients, family and caregivers to have “the opportunity for honest, sensitive and well-informed conversations about dying, death and bereavement”. It reiterated that doctors need to make those conversations possible.

Most of the resulting communications training seems to offer scripts and templates to help doctors deliver bad news and make decisions with patients. But this is not enough. In this context, doctors really need to understand conversations more broadly. They need to appreciate everyone’s role in a conversation. They need to learn the ability to listen and be silent. They need to confidently recover from conversational missteps.

“Oncologists are in general very uncomfortable with this kind of thing. They want to focus on treatment, and they talk eloquently about different protocols and clinical trials,” says Wen-Ying Sylvia Chou, a programme director in the Behavioral Research Program at the US National Cancer Institute. She oversees funding on patient-doctor communication at the end of life. “But sitting in the place of being a listener is not something that clinicians are trained for or necessarily comfortable doing.”

End-of-life medical conversations also often involve language in extremis.

Enter Bob Gramling. Hospitals track infection rates, bed occupancy and many other measures. Why not good conversations, too?

Amiable and serene, wearing a bracelet of Buddhist meditation beads, Bob sees a big role for artificial intelligence (AI) that can detect and measure the features of clinical interactions that matter to patients, then report those measurements to numbers-oriented healthcare systems.

Once such technology is widely available, he says, “we can incentivise our hospitals to build systems to improve those interactions and reward doctors for doing it”.

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“How are you?” asks the nurse practitioner, who’s just come into the patient’s room.

“Fine,” the patient says. She’s a 55-year-old white woman with stage 4 breast cancer. Neither she nor the nurse practitioner know that she’ll be dead in five days.

“No, you’re not,” the nurse practitioner retorts.

“Oh, a loaded question,” the patient laughs.

“It’s been a long – well? No,” says her spouse.

“No,” says the patient. “It’s a polite question, it’s a polite answer.”

This is a snippet of a conversation in Bob’s database that he played to his brother David, a linguistics professor at the University of Arizona. David recognised the dynamics of this specific moment. The people in that room hadn’t been talking about care or disease, but they had been doing something important in the conversation that would affect the quality of the care.

When the Gramlings’ father died, David flew home from a literature studies fellowship in Berlin. But years earlier, he’d been intimately involved as a caregiver, witnessing a “smörgåsbord of insane, irrational communication failures” with lawyers, nurses, nutritionists and priests.

For a year after their father’s death, the brothers were swallowed by family matters. As they emerged, they began talking about palliative care communication and linguistic research in healthcare settings, and began to collaborate professionally.

The most recent result is a book, Palliative Care Conversations, published in early 2019. It aims to show physicians how conversations work, such as how clinicians and patients often understand words and phrases differently. David looked at the conversations at a granular level, using the tools of a linguistic subfield called conversation analysis. He spent years listening to audio recordings of the conversations, noting moments worth closer analysis.

Meanwhile, Bob provided clinical details about medical culture. In the last few years, he has also hung out with jazz musicians, who are master communicators when they’re improvising, and visited the Stanford Literary Lab to see how digital tools can be applied to massive literary corpuses to understand patterns too diffuse for human readers to catch.

Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.

As the Gramlings note in the book, the above back-and-forth between patient, spouse and nurse practitioner is remarkable for a first exchange between strangers. They explain that’s because “the clinician is willing to risk conventional rapport-building pathways by contradicting the family member’s self-reported state of mind”. In other words, the physician has opened the door to a looser mode of relating – and it works.

Another conversation doesn’t go as well. It’s a “pragmatic failure”, as David would say.

“When I came in,” says the nurse practitioner, “I saw you were watching Scrubs.”

Scrubs?” the patient says. He’s a 63-year-old black man with stage 4 kidney cancer, who will live for 135 more days.

“Have you ever seen Scrubs?” asks the nurse practitioner, who is white.

“Yeah,” the patient says. “No, I wasn’t watching Scrubs.”

As the exchange unfurls, it’s clear the patient and clinician won’t connect. The clinician then seems to want to force their way to the task at hand, and forget the small talk where rapport could be built.

“When you study communication in healthcare, you’ll see a lot of monologues from doctors,” Bob says. “I don’t mean that in an insulting way – it could be really good information.” In palliative care, he explains, conversations are different: “It might be just because it’s the nature of palliative care. It’s what we do and what our value is… there is a lot of turn-taking.” That’s another term he learned from his brother. It refers to the back-and-forth of conversation.

“This is not a clean, rational, logical experience that fits on an 8-and-a-half-by-11 piece of paper, it’s a human-engaged relational endeavour,” he adds. “If we’re going to develop metrics for that, we’d better be looking at both the beauty and the science from many angles.”

Research on end-of-life communicating and decision-making typically looks at what doctors or nurses say. It rarely takes into account the deeper linguistic and cognitive factors that influence patients’ abilities to communicate in the first place.

One study, by speech-language pathologists in the late 1990s, showed just how large these language challenges can be. They gave a battery of language comprehension and memory tests to 12 hospice patients: 11 of them couldn’t recall words, had difficulty understanding things and pronouncing words, and had difficulty remembering what was said to them. These symptoms get in the way of normal activities, like having conversations.

Even something as crucial as how well older patients can hear gets overlooked. In a 2016 survey of 510 hospice and palliative care providers across the US, 87% of them said they did not screen for hearing loss, even though 91% of them agreed that patients’ hearing loss impedes conversation and negatively affects the quality of the care they receive. Only 61% said they felt confident nonetheless that they could deal with patients with hearing problems.

The Gramlings pay a remarkable amount of attention to another factor: the pain, shortness of breath, fatigue and medications that can keep patients from communicating normally.

In his research, David has addressed what he calls “language in extremis”: what happens when people’s ideas about language and communication buckle under the strain of circumstances, as in multilingual experiences in Nazi concentration camps, or interpreting in border patrol detention facilities.

End-of-life medical conversations also often involve language in extremis. As cancer brings a person’s life near to its end, they may have lost some of their lifelong communicative powers to the disease or its treatments. They may have less ability to speak subtly and indirectly, which is important for politeness. Shallow breathing shortens utterances, and drugs may block word-finding. All of this reinforces an asymmetry in communication that doctors don’t always grasp.

At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make.

A physician might encourage a patient to speak openly, and indicate their willingness to listen, but in practical terms, “That gesture doesn’t quite work,” David says, and doctors need to understand why.

At the same time, people still hew to lifelong social conventions about being a user of their language. They might be dying, but “They don’t back away from their interactional responsibilities,” David says. They honour turn-taking; they don’t interrupt. They tell jokes, they use family language, and they create mini-rituals of inclusion and exclusion, often to deal with the communication asymmetries.

“If I were picturing the developmental arc,” says David, “it wouldn’t be coasting down into death. It would be all the way and sometimes heightened. The kind of complex literacy you need to use in a hospital setting in a serious illness, and managing all your oncological terms – it’s almost like the competencies themselves get expanded in this end of life.”

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In his lab, Bob is examining even more fleeting aspects of conversations, such as pauses. It’s an interesting choice, because pauses might be considered as a sign that a speaker has lost their way or that an interaction is breaking down. On the other hand, pauses are easy to locate in the acoustic signals of recorded conversations. And they might indicate where someone is listening or about to say something important, so they might be a good thing.

Bob’s team used machine learning to identify pauses of 2 seconds or longer in spoken conversations, then human coders like Brigitte Durieux tried to categorise them, looking for ones that were more than just silence.

Because they didn’t have access to what the doctors or patients were actually thinking, they looked for the presence of emotional words and other sounds like sighs or crying on either side of the pause. Did a question about the quality of life, treatment hopes, prognosis or dying precede the pause? If so, the pause may have been because the doctor invited the patient to consider something.

The team found that during some of these pauses, some connection, shift or transformation was occurring. These “connectional silences” were rare. Out of a set of 1,000 clips with pauses, a mere 32 were connectional in nature. They were brief, as well, most lasting less than four seconds. But there’s still power in them.

The dynamics of a conversation change dramatically after such a connectional silence. Suddenly, a patient will be talking more than they did earlier. They’ll be directing the conversation, not the doctor. It’s as if the mutual agreement to pause for two seconds spilled into an agreement to shift roles.

“No, for some reason I guess I just in my head was gonna be on [chemotherapy] for the rest of my life and everything was gonna be hunky dory and…” a patient begins.

A 2.9-second connectional silence follows. The doctor inhales audibly, to signal they will respond, which makes the patient pick back up.

“You know. I knew early on, I mean you told me early on it’s not like and then this will be the rest of my life. Something, you know, might go down.”

The doctor responds. “Something. That can be a very hard thing to think about. That here we found something that’s helping but you can’t stay on it for the rest of your life.”

In other moments, the silence comes after a doctor has said something empathetic.

“It’s rare of me to tell somebody point-blank you’ve got to stop. However, I will say you have my permission to set limits,” the doctor says.

“Okay,” says the patient, then falls silent for nearly seven seconds.

His wife chuckles. “He can’t stand the thought of it. I can tell by his laugh,” then she laughs.

“I know he can’t stand the thought of it,” the doctor says.

“No, that’s okay,” the patient says. “I’ll get used to it.”

Or in another instance, the doctor tells a patient’s spouse, “what you feel is really hard. It’s really hard.” There’s a 2.8-second silence.

“I just wish he had a better quality of life.”

“I know, I know,” says the doctor.

Even though these connectional silences don’t happen often, Bob thinks they’re good linguistic markers of connection exactly because doctors don’t commonly use them. When someone good at monologuing and interrupting falls silent, it may mean they’re allowing something else to happen.

Bob surmises, “More often than not, the conversations that have a lot of space in them are probably going to lead to people feeling more heard and understood.”

§

Judy had a question. Having come to the hospital at the University of Vermont to recover from the flu, this elegant, 83-year-old woman was lying in her bed. Two doctors had come to her room bearing news. It was cancer, not the flu, and it had spread from her liver. She could undertake a course of chemo, or she could have her pain managed as she died.

She turned to her daughter, Kate, sitting beside her. “What should I do?” she asked.

When the doctors had requested this meeting, Kate had dropped everything to be there. It seemed unusually serious. Now she knew why. She wondered why she hadn’t seen the signs of her mother’s cancer. Judy’s skin had started to look yellow, she recalled. But instead of recommending a check-up, she bought her mother some pinker make-up.

In this pivotal conversation, the doctors presented the options but also wanted to know what was important to Judy. They knitted the science together with thoughtfulness and compassion. Kate was struck by their slow, almost languid approach to delivering the news.

Slowly it dawned on her that this was a conversation about her mother’s death. Neither of them had prepared for this. Not now, not so soon.

“It had the nature of a conversation with a clergyperson rather than a doctor,” she remembers. Pastoral kept coming to mind.

At the end of the conversation, one of the doctors gave her his card. It was Bob Gramling. Kate has since seen the bright blue spectrographs showing gaps in conversation – where the pauses occur. She thinks these are important moments as well.

“Where there’s silence, where there are gaps, that’s where the caring shows up,” she says. “I think it’s incredible work to point out to doctors there’s a lot going on in the silences.”

Bob and David have only scratched the surface of how these conversations work. So far they have only studied English speakers, for example; pauses work differently in other cultures, so they need data on those moments, too. And because their data comes from people with cancer, there’s a concern that the analysis may be skewed.

With cancer, says Wen-Ying Sylvia Chou of the National Cancer Institute, most patients have time: “They continue to be themselves and continue to be part of the conversation and any ongoing discussion.” With other diseases, though, there could be more risk that the person would “lose cognitive function or physical function”. In those cases, she says, conversations “would look very different”.

Healthcare’s use of natural language processing – technologies that treat language as data – is expanding, and the chances are good that research like that of the Gramlings will expand to cover conversations with people who have other serious illnesses.

What is a conversation?

Bob isn’t the only researcher exploring the use of artificial intelligence in palliative care. In 2017, James Tulsky, a palliative care physician at Dana-Farber Cancer Institute in Boston and a Harvard professor who studies health communication, stressed that “mass-scale, high-quality automated coding will be required” to give feedback that helps clinicians improve their expressions of empathy.

Tulsky turned to Panayiotis Georgiou, a computer engineer at the University of Southern California, to develop automated detection of emotional connections between doctors and patients. In 2017, a team headed by Georgiou showed that certain acoustic features of the speech of couples in counselling could be used to predict marital outcomes. What if algorithms could do the same for palliative care conversations?

“The technology in theory exists out there to do all this,” Tulsky says. “It’s just a matter of doing enough research, running enough iterative trials, training up the machines to actually get these algorithms trained well enough so you could apply them to more random talk.”

I ask Judy’s daughter Kate what she thinks of using artificial intelligence to enrich human connections. “I wouldn’t worry about the technology,” she says. “The more technology, the more sacred the conversation becomes.”

What does she mean? Anything that enables humans to use their voices more effectively with each other is a good thing, she explains: “It’s because of the increasing technology that the interaction becomes more wonderful.”

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What is a conversation? It’s a setting where humans interact, often for a purpose but sometimes for none at all. People have to learn how to have conversations but when they become expert in their culture’s conventions, conversing becomes so automatic it feels natural.

Modern healthcare has hijacked conversation and made it a tool by which physicians can achieve their ends.

According to David, “The contemporary hospital still understands ‘conversation’ as ‘making a pre-determined X happen through conversation’.” This is a barrier in serious illness and end-of-life care, where the conversations need to be venues for figuring out what the X might be.

At the end of a patient’s life, there may not be effective medical treatments, just things to discuss and plans to make. This may need a more natural conversation than a medical one, a conversation in which none of the participants may know what the outcome will be.

After all, these conversations aren’t just for doctors; they’re for patients, too. And family members, nursing aides, housekeeping staff. “There are a lot of human beings who have a vested interest in this other human,” Bob says.

There are critics who don’t think artificial intelligence and machine learning have a role to play in palliative care. Bob’s view is that shying away from analysing this kind of conversation in this way means that essential opportunities for improving it will be missed.

“It is helpful, as a discipline that has historically thought of communication as just the art of medicine, to actually think that, no, this is a science,” he says. And understanding that science could help us re-engineer the healthcare system to support more meaningful conversations.

He’s aware of the delicacy in institutionalising and commodifying a human interaction, though. “As a physician,” he says, “I was afraid of being a researcher that was going to oversimplify this kind of sacred experience into something that’s measurable and convenient and essentially meaningless.”

That’s where Brigitte Durieux struggled with her feelings as she listened to thousands of audio clips of pauses. In some conversations, people were laughing, but she was struck by the loneliness in others. She had begun to recognise patients’ voices and wondered what had happened to them.

“Nobody is perfect, but there are times when one realises there’s something that could be said to make this feel less like a loss,” she says. Sometimes she whispered under her breath something the doctors could have offered instead.

After Bob found Brigitte crying, he wrote an ethics proposal to the hospital so that he could introduce a new procedure into his lab. He borrowed an idea from the hospital’s palliative care unit, where staff gather every week to say the names of people who have died, then ring a singing bowl.

Now, at the start of every Vermont Conversation Lab meeting, a researcher reads the name of one of the patients from the database and rings the bowl. So far, they have gone through the list of names twice.

The ceremony helps, says Brigitte, because it reduces the guilt of turning a sensitive moment in someone’s life into a piece of data.

“What it does ultimately,” she says, “is recognise the humanity of things.”

Complete Article HERE!

‘Happy to be out of the broken body’

One man’s journey to assisted death

Michael Micallef had lived with Huntington’s disease for nearly three decades. In July, he chose to die by medically assisted death in the backyard of a close friend in Toronto.

By Adam Carter, Kate Cornick, Paul Borkwood

As Michael Micallef’s body began to fail, a thought persisted in his mind — he didn’t want to die slowly, the way his father had.

For nearly three decades, the Toronto man had been living with Huntington’s disease. The hereditary, neurodegenerative illness had taken Micallef’s father about a decade before, and now, it was taking him.

As it progressed, his motor skills, speech, ability to read, and even Micallef’s ability to sleep were all faltering.

“He said he really [regretted] he didn’t have the courage to kill himself,” he said of his father.

That’s one of the reasons why on July 7, at the age of 69, the Toronto man and his wife, Vickie, held a party to celebrate his life before Micallef’s medically assisted death later that evening.

Surrounded by his closest friends and his wife of 48 years, Micallef got to say goodbye on his own terms during a party at his condo building.

Alongside dozens of guests, he enjoyed some of his favourite food — cinnamon buns, mangoes, and Whole Foods rotisserie chicken.

“This can be good for everybody. Not the result, but the process,” Micallef said. “Being able to have choices is extremely important to me. Not to others, but it is to me.”

According to the Office of the Chief Coroner, there were 1,593 medically assisted deaths in Ontario between June 30, 2018, and June 30, 2019.

Since the procedure was legalized in 2016, there have been more than 3,300 medically assisted deaths in the province, statistics show. The coroner’s office says that in Ontario, roughly 1.5 per cent of all deaths are now medically assisted.

It’s something Micallef considered ever since his diagnosis, nearly 30 years ago — but it wasn’t truly a possibility until the procedure became legal.

For Micallef and his wife, his decision to die wasn’t a cause for sorrow. His party was a celebration — of life, love, and memories made. There was a steady parade of hugs from well-wishers, along with hopes for an easy passage.

His brother, sister and cousins came. Friends surrounded Micallef to wish him well.

“I said to him, ‘Do you realize how lovely this is? Michael we are going to have a farewell party … when you go to wherever the next stage is, you’re going to know how people feel about you,'” Vickie said.
“This is a blessing.”

‘Little explosions’ in his brain

Micallef attended St. Michael’s College School through his teen years, where a voracious love of reading took hold, alongside a passion for competitive hockey.

Later in life, his job with furniture company Herman Miller had taken both him and his wife to England, Singapore and Michigan, before landing back in Toronto.

The pair did not have children. They had a large group of friends, extended family and associates all over the world.

In Micallef’s last days, he could barely read, or even sleep. He struggled to speak. His quality of life was plummeting.

Micallef’s wife, Vickie, said she said goodbye to him 10 years ago because his personality had changed. ‘The man I married hasn’t been with me for a long time,’ she said. The couple, pictured here in 2008, were married for 48 years.

“He told me, ‘My brain is starting to have little explosions in it and my muscles are starting to have little explosions,’ which means he’s going to the next stage,” Vickie said.

Huntington’s disease is an illness that causes certain parts of the brain to die, and results in physical, cognitive and emotional symptoms.

Patients lose weight, have diminished co-ordination, and difficulty walking, talking and swallowing. They can also face symptoms like depression, irritability, and obsessive behaviour.

Saying goodbye

According to the Huntington Society of Canada, people in advanced stages of the disease can no longer manage the activities of daily living, and need professional care.

Micallef wanted none of that.

“I think I said goodbye 10 years ago to Michael because the personality changed, so the man I married hasn’t been with me for a long time,” Vickie said.

Micallef’s family says he had a successful sales and management career. He was diagnosed with Huntington’s disease in his 40s. His father also had the genetic disease. After watching his decline, Micallef didn’t want to go through the same.

Last month, in a friend’s backyard in the city’s Leaside neighbourhood, a nurse injected Micallef with a sedative. Then a doctor administered a substance to end his life.

He died while reclining on a lawn chair, with his wife next to him.

“We had a lovely little chat before he left,” Vickie said.

“I know he’s in a better place. I know his fight — I know his pain — is over with.

“I tell people Michael’s soul is now soaring through the universe, happy to be out of the broken body.”

Complete Article HERE!

“Guardianship” Often Fails Poor Seniors.

Is There a Different Way?

Lack of regulation and potential for abuse make many elder care advocates wary of the guardianship model.

By

When Patricia Cassidy was at her lowest point, she had just been evicted, was overwhelmed with mounting medical bills, and was suffering from a traumatic brain injury that left her emotionally unable to cope with everyday tasks. Then her despair turned to fear as she found herself before a local judge, who mandated that she would have to cede control over her financial and medical affairs to a guardian — an organization that the court would task with managing many components of her life on her behalf.

“I went to the hearing, and it was very, very scary for me,” she recalled in a recent interview. At the time, her therapist and rheumatologist had petitioned the court to place her in a special public guardianship program for people without other means of support from family or friends. But Cassidy, a 59-year-old domestic abuse survivor facing several chronic ailments, feared losing her independence. “I was afraid of guardians,” she said. “I felt that they were going to come in and take over my life and take over everything I had and get rid of it all.”

Five years later, Cassidy said that what she most feared about guardianship — losing control — hasn’t happened. Instead, she’s stayed independent, living in a Brooklyn apartment her case worker helped secure. She now sees her guardianship, administered by the nonprofit advocacy group Vera Institute of Justice, as “just a part of my life.” But her program is part of a small, unconventional support network for extremely vulnerable seniors that aims to safeguard their lives without taking them over. For hundreds of thousands of other seniors, guardianship is an ethical gray zone, operating at the heart of a question that increasingly haunts an aging nation: When am I no longer able to care for myself?

Aging Gaps

Guardianship is one of the most ethically fraught aspects of the elder care system, hinging on the most sensitive questions about personal liberty, medical responsibility and kinship. And it all starts, for better or worse, with a judge’s decree. A court appoints a guardian when a senior is deemed unable to live independently, usually after a hearing process that reviews an individual’s medical needs or physical, intellectual, mental or psychological disabilities, and determines that guardianship is appropriate. Similar to adoption, the guardian is in most cases a relative or friend who petitions for them. But people with fewer resources might end up in the care of a public or private agency, which is tasked with managing issues like medical treatment, financial planning and end-of-life care.

Overall, about 1.5 million people nationwide are in some form of guardianship, more than three-quarters of them involving a relative. Seniors without friends or relatives who are willing to help manage their affairs may enter the care of a private guardian (who is generally arranged by family or friends and compensated directly), if they have the financial resources to do so. Elderly people who don’t have enough funds to finance their own guardians can enter a separate system known as public or community guardianship, provided by a nonprofit or government agency. But as a whole, court-appointed guardianships lack central regulation or monitoring. Advocates fear that as the Baby Boom generation ages and guardianship becomes more widespread, so will the potential for abuse or neglect.

The Vera Institute’s The Guardianship Project (TGP) is trying to get courts and communities to reimagine guardianship, both through research and advocacy and through running its own guardianship model, which now serves about 180 people across New York, including Cassidy. On a national level, TGP’s research on guardianship programs in several states suggests the system is letting many seniors fall through the cracks: Surveys of judges and other court personnel, along with professional guardians, indicate that many courts are overstretched; there is little monitoring of cases, and judges often lack expertise for handling complex cases of seniors with serious health and economic issues. Meanwhile, court-appointed guardians are in many cases attorneys, who might have no expertise in caregiving, and respondents reported a lack of guardians available with skills like social work and nursing.

“Basically, what the whole story is showing is that there’s a population of elderly, disabled and/or poor people that are largely invisible and largely ignored,” said TGP Director Kimberly George.

Meanwhile, public wariness of guardianship is growing: Media reports and government audits have revealed many cases plagued by dysfunctional bureaucracy and a pattern of elder abuse. In professional private guardianships, which often take in seniors who have some assets to pay for services, scandals have erupted in cases of neglect, exploitation or abuse of elderly people. But the poorest seniors are even more vulnerable, since their fate relies completely on the courts and public welfare systems. Poor, socially isolated seniors with complex care needs often find themselves assigned to a public or community guardian that is financed by public funds, but without adequate resources for care and legal services. According to Peter Strauss, an elder law attorney and professor at New York Law School, when funding is arbitrary and inconsistent, guardians, public or private are frustrated by “underfunding, short staff, and then they get overwhelmed with the number of cases that they can’t handle.”

“There’s a gaping hole in the system for folks who don’t have money, but who need help and don’t have anybody [who] can step in to pay their bills, make health care decisions and the like,” said Bernard Krooks, an elder law attorney who handles guardianship cases in New York. Although public guardianship programs could play a critical role for the most marginalized seniors, Krooks told Truthout, “The reality is, there has not been a funding mechanism in New York State to make this happen.”

Keeping Elders at Home

TGP’s model seeks to serve as a different kind of last resort, aiming to provide intensive services for seniors in economic hardship, with no family or friends available to serve as guardians. Funded by New York’s Office of Court Administration and other public and philanthropic funds, TGP serves clients across a range of settings, including residential care facilities, but aims to keep clients in their communities. Each client with a “wraparound team” that includes lawyers and other support staff, with specialists in managing public benefits, finances and housing. About half of the clients live at or below the federal poverty line, and half are people of color. About 60 percent of clients are living in their communities, while others live in residential institutions like nursing homes.

TGP’s multidisciplinary program intends to knit together different strands of the social infrastructure to help people avoid nursing homes and jails. If a client with mental health problems suffers a breakdown and gets arrested, TGP can provide legal representation to secure their release from jail and help connect them to a long-term treatment program that fits their needs. TGP can also support undocumented seniors by helping them obtain medical care and other services while avoiding immigration authorities and federal law that curtails non-citizens’ access to aid.

Until recently, Cassidy hardly fit the stereotype of an “incapacitated” elder. Earlier in her life, she had worked in public relation and museum curation, but over the years, her health deteriorated due to various chronic ailments and domestic abuse. Then in her mid-fifties, she was living on her own — just not very well. Her brain injury often triggered emotional outbursts; basic tasks like a visit to the bank could spiral into an angry breakdown. “I was very overwhelmed, and then therefore not able to even operate on the simplest level,” she said. Cassidy’s vulnerability was aggravated by estrangement from family members. “It was like I became an orphan at 50,” she said.

Her therapist and rheumatologist encouraged her to enter into the guardianship as a way of getting her life under control. A TGP case worker and other staff have helped her sort out her finances and secure a new apartment with a special housing subsidy based on her medical condition. While Cassidy is capable of making her own treatment decisions, her guardian also acts as an interlocutor. A conversation with a doctor can leave her “mentally fatigued,” she adds, but TGP staff “are there with me, and they’re talking to the doctor … then afterwards if they need to, [they] explain it to me five times — the doctor is not going to explain anything to you five times — [so that] I’m sure that it’s a good decision that’s being made.”

TGP works with individuals in residential institutions, but also helps them move back into their communities whenever possible. As the report explains, many clients become “stuck” in the medical system, “languishing needlessly in a hospital or nursing home,” unable to be discharged “because no one will take on the challenges of transitioning him or her back to their homes or to a less-restrictive setting with proper oversight.” Many guardians, George said, particularly those ill-prepared to deal with complex, high-needs clients, might be tempted to place a senior in a nursing home as an “easier” solution — eliminating the need for the guardian to worry about housing, food or managing the client’s bills.

When TGP steps in, the team prepares for a client’s return home by taking care of tasks like settling rent arrears with the landlord, or planning end-of-life care — services that the client would never be able to arrange while bedridden in a crowded rehab center. If a client’s condition deteriorates to the point that some form of institutionalization, such as placement in a nursing home, appears necessary, TGP would work to place them in the least restrictive setting, according to the study, perhaps seeking out a local facility “with staff who speak a client’s primary language and access to religious services and culturally familiar foods.”

Despite its personalized approach, a recent cost-analysis found that TGP’s budget saved its roughly 160 to 180 clients collectively about $3 million in annual Medicaid costs, primarily by avoiding placements in nursing homes.

The Vera Institute’s study suggests other counties and states can use a similar holistic approach to public guardianship. On the policy level, TGP’s study calls for an expansion of public guardianship nationwide — with additional funding, comprehensive monitoring of guardians and service providers, and enhanced regulatory standards, including a commitment to placing people in the least restrictive setting, and a staff-client ratio of 1 to 20 to ensure adequate resources and oversight. Overall, a more human-centered public guardianship program could enable the most vulnerable seniors to live more independently and stay close to their communities.

Safeguarding Elder Rights

Still TGP, with its limited capacity, is not itself a solution for the guardianship crisis. Some disability rights advocates criticize the concept of guardianship in general, viewing it as incompatible with the principle of independent living. They prefer alternative legal arrangements like “supported decision-making,” in which social service providers provide guidance for people on medical and financial decisions while still leaving them legally in charge of their affairs.

Meanwhile, progressive elder law advocates are also gravitating toward alternatives to guardianship that support independence whenever feasible. Alison Herschel, director of Michigan Elder Justice Initiative, says that while guardianship is necessary for some individuals, “we believe there are far too many guardianships and far too many cases that should have been resolved by utilizing less restrictive alternatives.”

The Vera Institute’s study urges court administrators to implement better training so courts can screen cases so people can opt for less restrictive options like supported decision-making. Instead of appointing a guardian for a senior with severe dementia, for example, a judge could arrange for a sibling to gain power of attorney to aid with medical or legal decisions, and provide a home health aide. Even when guardianship is strictly a last resort, the court process can be a framework for meeting a senior’s needs for both care and personal dignity, and providing support without threatening self-determination.

For Cassidy, the TGP guardianship model is not just about getting the right services, but regaining a firm sense of both her abilities and limits. Her guardian hasn’t taken over her life, as she had once feared; instead, it’s a stabilizing presence.

If she ever needs her case worker, she knows who to call. “I carry their card with me all the time.”

Complete Article HERE!

Palliative Care for MS

What It Is, When It’s Helpful

Palliative care can relieve emotional and physical suffering at any stage of MS.

By

This approach to MS care focuses on quality of life and may be beneficial at any stage of the disease.

In recent years, there’s been a movement among many multiple sclerosis (MS) healthcare providers to integrate palliative care into their practices.

When most of us hear the term “palliative care,” if anything comes to mind, we probably think of hospice care — measures taken at the end of life to ease suffering and maximize comfort.

But palliative care is an approach that may be beneficial to anyone who experiences suffering due to a health condition, whether they’re just diagnosed or have lived with it for years. And it’s on the rise among MS care providers.

From 2005 to 2014, the percentage of people with MS in the United States who received palliative care increased from 0.2 to 6.1 percent, according to an article published in December 2018 in the Journal of Clinical Neuroscience.

But as these numbers show, most people with MS still don’t have meaningful access to palliative care, and there are still many misconceptions among both doctors and patients about what palliative care involves and how it applies to MS.

Here’s what palliative care means in the context of MS, when and how it might be helpful, and how you may be able to incorporate it into your treatment plan.

What Is Palliative Care for MS?

Palliative care describes an approach to providing healthcare, rather than any specific type of treatment. While there’s no precise definition, experts agree that it means treating more than just symptoms.

“How do you maintain quality of life? That’s really the crux of what palliative care is,” says Rachael Stacom, an adult nurse practitioner and senior vice president of population health at Independence Care System in New York City. “It’s about comfort and relief of suffering.”

“The way I explain it is looking at ‘disease-centered’ versus ‘person-centered’ care,” says Benzi Kluger, MD, a neuropalliative care specialist at UCHealth University of Colorado Hospital and professor of neurology at the University of Colorado School of Medicine in Aurora.

“In disease-centered care, the primary focus will always be on the patient, meaning a person defined by their illness,” says Dr. Kluger. “Whereas in palliative care, the primary focus is on people who can define their illness” and what’s important to them — including not just the patient, but also family members and any caregivers.

A palliative care approach, Kluger emphasizes, means “helping people with medical symptoms, but also with difficult emotions — things like grief, guilt, loneliness, caregiver burnout.” This approach can be adopted by many different kinds of MS healthcare providers, including neurologists, primary care doctors, and nurses, and it doesn’t require any specialized training in palliative medicine.

In addition to what’s known as primary palliative care — where the approach is a routine part of MS care — there are also specialized palliative care programs for people with advanced MS who need extra services focused on easing a large disease burden and getting optimal caregiver support.

Whether it’s provided as part of normal MS care or as a specialized program, palliative care means that providers and patients are discussing what they hope to accomplish together, and what to expect over time.

“Our goal is to help people anticipate if things are getting worse, and to have open and honest conversations about functional decline,” says Kluger, as opposed to focusing only on medical treatments aimed at slowing disease progression.

When Palliative Care Can Help for MS

Stacom helps oversee a community-based long-term care program for people with physical disabilities, many of whom have MS. But she says that palliative care can help people with MS long before they would sign up for a program like hers.

“For people with a potentially progressive neurologic disease, suffering happens right at the time of diagnosis,” she says. “Some people think that ‘suffering’ is a very strong word, but there’s a significant amount of stress” that comes with MS at all stages.

Many people with MS experience what’s known as anticipatory grief, Stacom says — meaning that they’re grieving the loss of function that may come with MS even before it occurs, according to an article published in the July–August 2014 issue of Social Work Today.

In this context, palliative care soon after an MS diagnosis means discussing, “What’s going to happen to me? Am I going to wind up in a wheelchair? It’s about allowing space for those conversations to happen, and understanding what that person values,” she says.

Kluger notes that many people are looking for a “road map” as soon as they receive an MS diagnosis. “They don’t want to be feeling their way forward one day at a time in the dark. They want more clarity around their diagnosis, and what to expect” he says.

But even if palliative care isn’t used from the beginning of MS treatment, it can be helpful later on, says Kluger. “As the disease progresses, there may be different triggers for either referral to a specialized palliative care program, or stepping up the palliative care approach.”

Several years into having MS, many people are struggling with pain or fatigue, greater disability or loss of mobility, or planning for a future in which they may need a caregiver, says Kluger. At this point, a palliative care approach can focus on managing symptoms that have grown more complex, and on managing difficult emotions.

When someone has advanced MS, a palliative care approach can focus on increased emotional support, supporting caregivers, and providing home help and other social services. If someone is near the end of life, it may also include hospice care.

At any point in this continuum, someone with MS may benefit from a specialized palliative care program — as described in an article published in October 2015 in Multiple Sclerosis Journal — “if they’re at a point where pain management or fatigue management goes beyond what their primary neurologist feels comfortable with,” says Kluger.

Someone with primary-progressive or secondary-progressive MS may choose to make a specialized palliative care program their main “medical home,” Kluger says, since there may not be much that a neurologist can do for them in terms of traditional disease management.

Kluger has found that at all stages of MS, palliative care can result in better symptom control, especially with pain and fatigue. Often, he says, patients report a better quality of life once they begin a palliative care approach to their care.

And when people with MS start having conversations with their doctor about their future, “they’re empowered to take more control over healthcare decisions” through advanced-care plans, preparing for potential hospitalizations, and eventually arranging end-of-life care in a way they see fit.

Getting Access to Palliative Care for MS

Unfortunately, most people with MS aren’t offered a palliative care approach by their regular healthcare providers. “Neuropalliative care is a relatively new field,” Kluger explains, and even if medical providers are receptive to the idea of palliative care, that doesn’t mean they offer specialized services, like home-based care.

For more people with MS to gain access to palliative care, there will need to be “a grassroots push to move the field towards this,” says Kluger. “I really encourage patients and families to talk to their doctors about it. They really see the need for this, oftentimes more than physicians do.”

Stacom believes that palliative care hasn’t caught on more quickly because, among other reasons, “it requires a power shift, where the person becomes the one leading the care, as opposed to the healthcare provider. And I think that’s a hard thing for us to do” as providers, she says.

But Stacom remains convinced that healthcare will move in the direction of palliative care, for MS and other conditions. “Person-centered care is where healthcare is going now. I think that as healthcare providers, we have a unique position to be a partner, and support people to lead a full life.”

Complete Article HERE!

Living Well…

Embracing the natural stages of the dying process through hospice care

By Lauren Glendenning

When patients need hospice care, family members and other loved ones often feel overwhelmed with emotion. A caring and supportive hospice team can help alleviate some of these feelings.

We asked Kristine Cooper, executive director of Home Health and Hospice at Memorial Regional Health, to help readers understand more about hospice care at MRH and how it affects patients’ families.

What are some ways that hospice care can relieve stress for those who may be in charge of an elderly loved one?

Kristine Cooper: Hospice really provides support not only to the patient but also to the caregivers. We have nurses that spend time with caregivers, educating them about the disease and dying process. We also have our LCSW (Licensed Clinical Social Worker) who spends time with the patient and caregivers, discussing end-of-life planning. She also works with caregivers and families to address anticipatory grief.

Are there any myths about hospice care you’d like to clarify?

 

One myth would be that hospice hastens death. Hospice really embraces the natural stages of the dying process and neither intends to hasten or prolong death. Our team partners with the patient and family on the journey. Another myth is that hospice is expensive. Medicare actually covers the cost of hospice, including medications to treat symptoms related to the patient’s terminal diagnosis as well equipment needed to care for the patient safely in their home.

Why is it important for families to know about hospice care?

Hospice is not about giving up hope, it’s about refocusing hope. With hospice, there is hope that pain and other symptoms can be managed so that loved ones can live their best life in their final days. Hospice also offers hope to families and caregivers by providing support during this difficult time.

When is hospice care is necessary?

Hospice is here for patients who have been diagnosed with a life limiting or terminal illness with a life expectancy of 6 months or less to live.

What kind of care do hospice patients receive?

Hospice provides nursing, emotional and spiritual support. Hospice can also provide support from physical, occupational and speech therapy with the focus of helping patients move safely. We also have volunteers that can provide companionship and assist with light housekeeping and cooking. All these different services make up the patient’s care team that works closely with their doctor. The overarching theme about hospice is that it is really about what the patient or family needs.

Complete Article HERE!

A Good Life And A Good Death…

What Is Palliative Care?


Palliative care is a growing specialty that provides comfort care and that teaches patients and doctors how to talk about patients’ goals for life with serious disease and how to prepare for a good ending.

By

“He will not die on your watch.”

That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.

To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.

“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.

Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative.

In her new book, That Good Night: Life and Medicine in the Eleventh Hour, Puri writes about how palliative care specialists are working to change medicine from within — teaching other doctors how to talk to patients about their hopes and fears, not just their disease and treatment. Palliative care, she says, gives doctors, patients and their families a new vocabulary with which to talk about the way life’s goals can shift when you have a serious illness and how to plan for a good final chapter.

We spoke with Puri about the field of palliative care and what patients need to know.

This interview has been edited for clarity and length.

What is palliative care, and how is it different from hospice?

Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.

In our country, hospice is overwhelmingly provided in a patient’s home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we’re meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.

How common is it now to have palliative care specialists available?

There’s actually very few of us, and many of us are concentrated in the big cities. So in rural areas or in nonacademic teaching hospitals, there’s definitely a shortage of palliative care docs around the country. Our presence and the need for us is growing though. So for example, the American Society of Clinical Oncology now has a recommendation that at the time of diagnosis of a serious illness, palliative care should be involved. Patients with a serious illness can ask for a consultation with the palliative care team if their other care providers don’t bring it up, either in a hospital or a clinic setting.

We have studies that show that for patients with, for example, metastatic lung cancer, if they got palliative care right alongside their cancer treatment — as opposed to just getting cancer treatment alone — the patients actually lived longer and had better quality-of-life scores.

What other advantages does palliative care offer?

I think the emotional and spiritual aspects of it are actually some of the most important supports that we can offer our patients.

One thing my patients tell me a lot is, “Thank you for listening.” And I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients. To say, “I’m going to be with you through this whole journey, no matter what the outcome with your treatment, and work with your other doctors to make sure we’re all on the same page about what therapies may or may not actually be helpful to you in the way that you define helpful.” I think there’s something pretty magical about that.

You wrote that when you found palliative care, you were finally able to become the kind of doctor you wanted to be. What did you mean by that?

I grew up the daughter of an anesthesiologist — she was always my first model for what a doctor should be. My mother is very technically skilled, but she is also deeply devoted to the idea that every human being is kind of an embodiment of the divine who she felt she was in service to. So, she really had this beautiful intertwining in her practice of being very scientific but also being very spiritual — being able to take people to the operating room and control their physiology to get them through an operation but also understanding that the body and nature has its limits.

And that’s what I wanted to be: somebody with the technical and scientific command of medicine but who understood that every human life is different from the other. In my medical training, there were so much focus on the technical and scientific aspects. But as I was learning those things, I was not also learning how to talk with someone who has a serious diagnosis. How do you explain to them how their life might change? How do you ask, if this is not something that we can cure, “What would be really important to you in the time that you have?” And this language was not given to me in medical training.

When people get a diagnosis like cancer, they sometimes talk about “being a fighter” or “fighting the disease.” Why do you find that kind of language problematic?

When we think of disease as a battle to fight, you kind of divide people into winners and losers — which is not a mentality I think benefits them.

What’s dangerous is that when we’re talking about a fight, if someone chooses not to “continue to fight,” then people will often tell me, “I feel like I’m giving up.” I have to reframe that for them to say, “You may be a fighter, but your body cannot fight this anymore. Can you hear that distinction between you and the natural limits of your body?” I have found that to be incredibly potent because people can see that this isn’t a personal thing.

You know, you did not deserve to get this horrible bout of heart failure, and your not “beating it” is not your fault.

What are the consequences for doctors and for the patient’s treatment of using this kind of language?

I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home. I think that sort of “fight or give up” mentality is such a toxic binary. And I’ve seen people suffer tremendously because they felt that if they said no to therapy, that they would be letting other people around them down.

From my perspective, when I was in my residency, when I heard those words, I then felt obligated to offer anything and everything to the patient or family — even when I knew that certain treatments were not going to help them but could very well hurt them. So I think hearing those words almost put a stop to any real in-depth conversation about what someone is hoping for and what realistically we as physicians can offer them to fulfill those hopes.

I still regret the ways that I offered therapies to patients that I knew would not be in their best interest. But I didn’t know how to talk about another way when I was in my training.

What kind of therapies might be harmful or not be in their best interest?

Being in a clinical trial is one example of a therapy people often feel they need to take but may not truly be in their best interests if it, for example, requires them to uproot their life and go elsewhere. Or if it has side effects that we may not really know about, because part of the trial is to figure out what the toxicities are.

And the other scenario I’ve seen is people in the ICU with an overwhelming infection or a set of post-surgical complications, and they’re suffering one complication after another, especially if they’re elderly. And we can keep trying to manipulate their physiology, using very powerful medications and machines, but we’re not always as attentive to what someone’s life would actually look like if we were successful in reversing some of the problems that they’re going through.

So when a palliative care team is involved and you have these kinds of difficult discussions early on in a serious diagnosis, what can a good outcome look like for the patient?

The advantage of getting to know people and their family early on when they first get a diagnosis is that we can really help them through their treatment. To think about and articulate what’s most important for them if a specific treatment doesn’t work or if it takes a huge toll on their quality of life. And when we can have those discussions, then a happy ending might be that they have their pain, their shortness of breath, their nausea, all of those things exquisitely well controlled. And they decide on their own terms when to transition, for example, to hospice.

When I was a hospice doctor, I think the best situations were when people were still able to be themselves and participate as much in living as they could — even though their bodies were failing. They could still be cognitively intact. Their symptoms were well controlled. They were in a place they wanted to be in. They were living their lives on their own terms for however long they had. And that to me is what a good ending can look like.

Even other doctors don’t always understand what palliative care is or embrace it. What do you think the obstacle is?

I think doing what we do in our field is a little bit of the rejection of our culture’s idea of what medicine exists to do. I think the public thinks of doctors as heroes that can beat diseases and extend lives. And in many important ways we are heroes. Surgery is safer. Childbirth is safer. We’ve eliminated certain infectious diseases almost entirely because of vaccines. But I think we are not good at knowing what to do when we can’t fix a problem.

For patients who have a terminal diagnosis, what advice would you give about how to decide whether or not to opt for some of the more extreme life-sustaining measures, like going on a ventilator or a feeding tube?

In planning ahead, I always encourage people to think about the quality of life that they value. What are the things that they would be OK not doing? And what are the things that if they couldn’t do them would make their life extremely difficult — maybe even not worth living? And if people can think about their values and their goals in broad strokes, the broad strokes can help inform the more specific question about CPR or a ventilator.

I encourage families to really look to their doctors to guide them. And to say, if there’s a question about going on a ventilator, “Is this for a reversible condition, as far as you can tell, doctor? Or am I taking a gamble, a big enough gamble that he may be stuck on the ventilator forever, and then I would have to make the decision to stop? Tell me more about that.” I think being able to ask your doctor openly and not feel alone in making some of these weighty decisions is extremely important. So there are those two components of it: thinking yourself, “What is the sort of life I value? What would be a life that would be too hard for me to live even with the help of medicine?” And to talk to your doctor, even if you’re healthy right now, because you want to prepare for the storm.

Complete Article HERE!

Research shows psilocybin — a Schedule I narcotic — to be of great help to patients with end-of-life problems


Guided LSD session at Johns Hopkins University.

“People in this country don’t talk about death. When I would talk about it sometimes with people they would say, ‘Oh be optimistic! Don’t talk that way. You’re gonna be fine.’ You really need to look at it (death) and this is the perfect way to do it.”
Ann Levy – psilocybin-assisted psychotherapy study participant

I remember the ride home being really quiet. Typically, my mom would be driving me nuts, loudly singing old Methodist hymns, rather than letting us listen to music on the radio. But this time she just drove silently as my grandmother, Lillian Brustad, stared out the window of our well-traveled station wagon. We had just left my grandmother’s oncology appointment in Rochester, New York and we were heading back to her home in Hamilton. There was no discussion about the appointment, no talk about any diagnosis, no ‘next steps’ and no ‘why me’s?’ What was said was said in a meeting with my mother, my grandmother and her doctors.

I’d break the silence with my repetitive pre-teen complaints as to why we should have stopped in Rochester, rather than waiting until Syracuse to pull into a Friendly’s restaurant for a Jim Dandy sundae. I’d debate from the back seat that stopping in Rochester would have made me full and happy. Stopping would have better allowed me to finish this book report on Mickey Mantle that I was putting off.

When I wasn’t complaining; there was silence…

We made many more trips to Rochester over the next few years. My grandmother remained stoic in her battle against cancer, despite it wreaking havoc on her physical body, eventually taking her life.

The final months of life are often marked by increasing physical and emotional suffering. As one approaches death, we often experience varying degrees of depression, hopelessness, anxiety, and a desire to hasten death. The prospect of our loved one’s looming death can lead to feelings of defeat, helplessness, and despair in family members and within the patient’s medical team.

How do you want to die? Most people hope to die at home, with their loved ones, but sadly an overwhelming majority of us die in a hospital or extended care home surrounded by beeping equipment.

What would a good death look like? Anthony Bocelli, PhD, is a palliative care psychologist and investigator in a study conducted at the NYU School of Medicine on the use of psilocybin-assisted psychotherapy to help patients and families deal better with end-of-life distress.

“Death needs to be humanized,” he says. “Although the end-of-life can be profoundly difficult, it can also trigger a search for meaning and an openness for the sacred.”

Maria Sabina called psilocybin mushrooms her ‘saint children.’ Sabina was the Mazatec curandera/healer that banker Gordon Wasson sought out to learn the secrets of ‘magic mushrooms.’ Sabina introduced Wasson and his wife Valentina to teonanácatl; the Psilocybe mushroom. ‘nti-ši-tho in Mazatec, meaning the ‘Little-One-Who-Springs-Forth’.

Wasson went on to famously detail his psychedelic experience in Life Magazine, introducing these sacred mushrooms to the Western world. Albert Hofmann, discoverer of LSD and chemist at the Swiss Sandoz Laboratories, isolated psilocybin in 1957 from mushrooms collected by Wasson’s team on their second trip to Oaxaca.

These sacred mushrooms have been used for millennia by indigenous cultures around the globe for healing and insight. Psilocybin-assisted psychotherapy melds this ancient sacred wisdom with modern day scientific technology. I am not talking here about eating a bag of ‘shrooms and tripping at a rock concert; this is about the therapeutic use of this valuable tool in a controlled setting under supervision by trained guides to help combat depression, addiction, and existential distress.

So why psilocybin mushrooms and why now? It has been said that psychedelics could be to psychiatry, what the microscope is to biology or the telescope was to astronomy. Bear in mind that telescopic science was prohibited in 1616 for over 100 years, in fear that people may discover that planet Earth was not the center of the universe.

Alicia Danforth, Ph.D, served as investigator on a psychedelic research study at Harbor-UCLA Medical Center examining the safety and efficacy of psilocybin as a treatment for advanced-cancer anxiety. She remarked, “It’s very important not to lose sight of the fact that research with psychedelic medicines has been going on for thousands and thousands of years. As long as there has been humans really. What’s new is when you get into the Western medical model.”

Dr. Danforth worked with Dr. Charles Grob on an important pilot study at Harbor-UCLA Medical Center on 12 patients who were facing end-of-life from advanced stages of cancer. Subjects were administered a placebo (niacin) during one session and the other session they received psilocybin.

I had the pleasure of discussing the study and their findings with Dr. Danforth. “Our participants were really near death. Some did not survive the six-month follow-up period,” she said.

Dr. Danforth detailed that they administered “one session at a low-to-moderate dose because we were the first cancer-treatment study in a new wave of psychedelic-assisted therapy and the FDA was really conservative. The main purpose for these little pilot studies is to establish that they are safe and is it even achievable. Does it work?”

The other studies that I will cite in this article worked with higher doses of psilocybin. However, Danforth stated that, ‘even with one session of preparatory psychotherapy session before (treatment day), then a really supported session on the day of treatment, then therapy afterwards, our study found a reduction in anxiety and a trend toward a reduction in depression.” She continued, “It’s more important to look at the trending that leads to larger studies so you can make stronger claims. We saw positive trends and there was a significant difference in the anxiety scores. The qualitative outcomes were good; the safety data were good. We didn’t have any serious adverse events and everything was green light go for the larger studies.”

As Danforth mentioned, humans have been conducting research for thousands of years on psychedelics. Prior to prohibition of these substances in the late sixties, there were more than a thousand studies conducted with more than 40,000 subjects and many showed positive trends.

During the 1960’s, Dr. Eric Kast, from the Chicago Medical School utilized LSD for a series of studies working with cancer patients encountering death. Several hundred advanced-stage cancer patients were administered LSD. Findings showed trends toward pain reduction for several weeks, relief of depression, improved sleep, and a lessened fear of death. Dr. Kast noted that some of these individuals showed a striking disregard for the gravity of their personal situations. They frequently talked about their impending death with an emotional attitude that would be considered atypical in our culture.

Another important study by William Pahnke from the Maryland Psychiatric Research Center, in Baltimore conducted a study that was published in the Harvard Theological Review in 1969. His work examined the psychedelic mystical experience in the human encounter with death. He found, “The most dramatic effects came in the wake of a mystical experience.” He reported a decrease in fear, anxiety, worry and depression. Often the need for pain medications was lessened, because the patient was able to tolerate pain more easily. There was a profound increase in serenity, peace, and calmness, with a marked decrease in the fear of death.

Roland Griffiths, Ph.D., is a Professor in the Departments of Psychiatry and Neurosciences at the Johns Hopkins University School of Medicine. He is the principal investigator of the Johns Hopkins Psilocybin Project. He and his team have been studying the effects of psilocybin and its ability to bring about mystical experiences. Their team conducted the largest and most rigorous study in this new wave of psychedelic research involving fifty-one patients who had received a potentially life-threatening cancer diagnosis.

“We found that the response was dose-specific,” Dr. Griffiths said. “The larger dose created a much larger response than the lower dose. We also found that the occurrence of mystical-type experiences is positively correlated with positive outcomes. Those who underwent them were more likely to have enduring, large-magnitude changes in depression and anxiety.”

The Johns Hopkins group reported that psilocybin decreased both clinician and patient-rated depressed mood, anxiety, and death anxiety. The results showed increased quality of life, sense of connectedness, and optimism. Participants expressed an increased belief that death is not an ending, but rather a transition to something even greater than this life. About 70% reported the experience as one of their top five spiritually significant lifetime events, including the birth of a child or death of a loved one.”

He continued, “There are potential risks associated with these compounds. We can protect against a lot of those risks through the screening and preparation procedure in our medical setting. About 30 percent of our people reported some fear or discomfort arising sometime during the experience. If individuals are anxious, then we might say a few words, or hold their hand. It is really just grounding them in consensual reality, reminding them that they have taken psilocybin, that everything is going to be alright. Very often these short-lived experiences of psychological challenge can be cathartic and serve as doorways into personal meaning and transcendence.”

Dr Charles Grob, the principal investigator on the UCLA study reported similar results, “Psilocybin facilitates a greater likelihood of achieving a psycho-spiritual state of consciousness — a mystical kind of experience. The old research literature from the 50’s and 60’s very strongly indicated that individuals in psychedelic research studies, who experienced a spiritual epiphany during the course of their many hour treatment sessions, were more likely to have a long-term positive therapeutic outcome.”

Why does psilocybin appear to efficacious, while modern pharmaceutical efforts are largely ineffective?

Dr. Griffiths explains, “Psilocybin acts very selectively at serotonin-2A receptors, which are a neurotransmitter that promotes positive feelings. Acting like a ‘lock and key’, so psilocybin can click in to this receptor site and activate a variety of processes.” With all of the classical psychedelics; LSD, psilocybin, mescaline; the thing that they have in common is that they activate serotonin-2A receptors.

Dr. Danforth added, “Sometimes when we are in a challenging situation in life, our thoughts can get stuck in a loop. Negative thoughts just continue and continue and continue and psilocybin in a therapeutic setting can function like a big hand coming in and jiggling the needle on a skipping record, so that a tune can resume.”

Yet another study — this one conducted by NYU Langone Psilocybin Research Project — examined the effects of psilocybin on the psychosocial distress with patients with advanced cancer. This trial was led by Stephen Ross, M.D. and Anthony Bossis, Ph.D. Their study included 29 patients facing end-of-life. In their sessions, subjects were either given either a moderate dose of psilocybin or a placebo (niacin), cross-switching to the other after about seven weeks after the first session. Findings were very similar to the studies at UCLA and Johns Hopkins. They found that psilocybin produced immediate, substantial, and sustained improvements in anxiety and depression leading to decreases in cancer-related demoralization and hopelessness, improved spiritual well being, and an increased quality of life. At the six-month follow-up, psilocybin was associated with enduring anxiolytic and antidepressant effects.

The NYU researchers further reported sustained benefits in existential distress and quality of life, as well as improved attitudes towards death.

There is growing anticipation that psilocybin could be rescheduled and open up further opportunities for psychedelic research. Decriminalization of psilocybin is going to the voters in the city of Denver on May 7.

“I look forward to a day, that if it were clinically indicated to be able to offer that service to certain clients,” Dr. Danforth said. “Expanded access is not available yet; no one in the United States is able to legally work with Schedule I substances in a clinical setting,”

She continued, “It’s possible in the near future that some in the MDMA (ecstasy) world we will have expanded access for PTSD therapy. It’s hard to anticipate what’s going to happen with MDMA and psilocybin, but I don’t think it’s going to happen overnight. Everybody’s kind of waiting to see what happens in Denver and what that’ll mean… There are a ton of opportunists rushing in trying to make a buck, but in terms of real clinical work, that process moves at a snail’s pace, as it should.”

I asked Dr. Danforth on additional prospects for psychedelic-assisted psychotherapy. “My private practice is almost exclusively adults on the autism spectrum and some of them have very severe social anxiety and MDMA would be a real powerful clinical tool.”

She continued, “Others are very interested at looking at psychedelics for the betterment of well people. Two streams of effort working here — treating people that are unwell or providing guidance for those that are well, like we have been doing for thousands of years. They may have spiritual reasons for altering consciousness. It’s not all about getting a competitive edge in Silicon Valley, but it’s about how do we make our community healthy. For me it just happens to be the healing aspect. For people that are really suffering is where my interests lie.”

So what are the most promising areas in psilocybin research?

“Two of the most promising areas are Palliative Care; reducing the stress near the end of life and addiction studies,” Danforth replied. “I’ve always been really fascinated with the smoking cessation studies at John Hopkins and with Michael Bogenschutz M.D. (NYU) studies on alcoholism. I think that was one of the most promising areas of study from the first wave of psychedelic research in the sixties. I’d like to see more funding and research around treating addiction.”

Danforth said it’s frustrating not being able to use all the tools she’d like when treating patients. “I feel a bit like a firefighter who’s still allowed to fight fires, but I just can’t bring my hose,” she said. “The answer isn’t, ‘well let’s just give everybody fire hoses,’ because a lot of people could be hurt in an uncontrolled setting. I hope that we can find a middle ground.”

Dr. Danforth advises, “Psilocybin was used as a sacrament for sacred rituals, with a lot of reverence, wisdom, tradition, and mentoring. I’m not sure we are grown up enough as a culture to just have widespread access.”

Dr Danforth’s associate on the UCLA study, Gurpreet S. Chopra, emphasized, “I think it’s kind of ridiculous to be a scientist and a doctor and not investigate and try to understand how we can use these tools in a Western Culture safely.”

I posed a similar thought to local clinical psychologist and founder of the Alaska Psilocybin Society, Dr. William Kerst. Dr. Kerst finds that psilocybin being a Schedule I substance to be ridiculous. “It clearly has potential medical benefit as demonstrated by the studies that are ongoing and not only is it not necessarily addictive, but it tends to be anti-addictive.”

“Working with the Alaska Psychedelic Society, I have had several patients that are struggling with end-of-life anxiety, which is one of the primary uses of psilocybin in some of these studies and they don’t have time for legalization efforts to get pushed through. They need relief and it looks like these substances may be able to do that, and right now we have to say, ‘no’ to these patients and that’s terrible. It’s heart-wrenching, honestly.”

Should you have further interest in investigating psychedelic substances, the Alaska Psychedelic Society is holding their monthly meeting on Saturday, April 27 from 2 to 4 pm at Uncle Leroy’s Coffee, located at 701 West 36th Avenue in Anchorage. Also visit the Society’s Facebook page to keep updated on future meetings as well as recent studies and articles regarding psychedelics.

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