End-of-life conversations can be hard, but your loved ones will thank you

You can start these conversations simply, like saying, “I need to think about the future. Can you help me?”

By

Death – along with taxes – is one of life’s few certainties. Despite this inevitability, most people dread thinking and talking about when, how or under what conditions they might die.

They don’t want to broach the topic with family, either, for fear of upsetting them. Ironically, though, talking about death “early and often” can be the greatest gift to bestow on loved ones.

As a sociologist who has studied end-of-life issues for more than two decades, I’ve learned that people know they should talk about death honestly and openly, but surprisingly few do. In fact, one recent study showed that while 90% of adults say that talking to their loved ones about their end-of-life wishes is important, only 27% have actually had these conversations.

It’s frightening to think about our own suffering, or our loved ones’ distress. But everyone should talk about and prepare for death precisely because we want to minimize our own suffering at the end of life, and soften the anguish of loved ones left behind.

No time to plan

These conversations are more urgent now than ever, as the COVID-19 pandemic has changed how Americans die.

For the past several decades, most adults have died from chronic illnesses like heart disease, cancer and lung disease. The time between diagnosis and death for people with these conditions can be months or even years. That gives patients and their families ample time to share their feelings, resolve unfinished business, and make practical preparations for death – including estate planning, advance care planning and even planning a celebration of life that bears the dying patient’s creative imprint.

But when the pandemic struck in 2020, COVD deaths began to occur quickly and unexpectedly, with many patients dying just days after they felt their first symptoms. Their families were robbed of final moments together and often had no documents in place to guide the patient’s health care or the distribution of their possessions. This suddenness, isolation and lack of preparedness all are hallmarks of a “bad death” for both the patient and their family.

What to cover

Advance care planning, which typically involves a living will and a health care proxy, allows people to articulate which medical treatments they want or don’t want at the end of life.

A living will formally articulates preferences for care, such as whether to use comfort measures like hospice and palliative care, or more invasive measures like feeding tubes and ventilators. Documenting these preferences when the patient is still able to make those decisions helps to ensure they die on their own terms – a cornerstone of the “good death.”

Appointing a health care proxy when still relatively young and healthy gives people an opportunity to decide who will be tasked with their end-of-life decision-making. It also clarifies loved ones’ responsibilities and can fend off arguments that could arise around the deathbed. Having these discussions early also prevents panicked choices when someone’s health takes a dramatic turn for the worse.

A woman and her older mother sit on a porch, drinking coffee.
End-of-life conversations can ease suffering for families, not just patients.

End-of-life discussions also help you to construct your own legacy. In “Death and Identity,” a classic book in death studies, sociologist Robert Fulton observed that “preserving rather than losing … personal identity” is a critical aspect of the dying process. Being treated like a “whole person” is a core component of a good death, and honest discussions are a key to maintaining your unique identity, even at the end of life.

Conversations also help us share how we’d like to be celebrated after we’re gone. This might be as simple as dictating the music, food, and photo or video displays for a memorial service; where to spread ashes; or charities for mourners to support. Some people take more ambitious steps at leaving behind a legacy, such as penning an autobiography or leaving behind videos for relatives. Creating a “post-self” that lingers years after the body has died can be a cherished gift to families.

Getting started

Broaching these conversations can be awkward or unnerving, but it doesn’t have to be. Death is a natural and inevitable part of life and should be approached as such. I have argued that the end of life is a stage, just as childhood, adolescence and old age are.

Each stage teaches lessons for the others that lie ahead.

Children learn skills in school that they’ll need to enter the workforce. Teens learn how to navigate romantic relationships as preparation for the future. Adults of all ages can learn about hospice and end-of-life medical care, make preparations for passing on their inheritance and discuss how they’d like to be honored in death. These steps can help attain an end of life marked by peace and self-directedness, rather than strife and the loss of autonomy.

An older Black woman writes as she sits at a dining room table in front of a china cabinet.
Recording memories and ideas for a memorial service can help you craft your own legacy.

Ample resources are available to guide these conversations. Organizations like The Conversation Project – not related to The Conversation – have created guides for productive end-of-life discussions. Advance care planning documents ranging from living wills to the “Five Wishes” program, which helps clarify people’s values about how they’d like to spend their final days, can be a good starting point.

A simple introduction like “I need to think about the future. Will you help me?” is a good icebreaker. And the first conversation eases the path to future chats, because changes in physical health, family relations and mental sharpness may necessitate revisions in end-of-life plans.

By discussing these issues during calm times, such as after a holiday get-together or birthday dinner, we can feel prepared and empowered as we and our families approach the inevitable.

Complete Article HERE!

How I helped my mother to have a good death from afar

Due to the COVID-19 pandemic, Melbourne man V Srikanth had to support his mother in India from afar as she neared the end of her life. This is what he learned.

By V Srikanth

And so when I got the call from my brother-in-law at 4 o’clock on a Thursday afternoon to let us know she had suffered a serious stroke, my brain snapped into clinical gear fairly quickly.

I was in Australia and she was near Bengaluru, and so began the very strange experience of helping my mother through her illness and to have a good death from afar in the middle of a global pandemic.

I was in Australia and she was near Bengaluru, and so began the very strange experience of helping my mother through her illness and to have a good death from afar.

I come from a medical family. I trained to be a physician and a geriatrician and I think I can make very clear decisions. My father, my sister, my brother and my brother-in-law are all doctors too. However, even for us there were many difficult decisions to be made. There were points where we were second-guessing ourselves and questioned whether we were doing the right thing.

In my job I have seen dozens of advanced-care plans. They are a good thing. But even the best advanced-care plans come unstuck. People’s wishes may not always be communicated well, and many families struggle with letting their loved ones go. Some want everything to be done until the very end, but what ‘everything’ is, might be viewed differently by different people. You can’t apply the same advanced-care plan to every scenario. 

Early on my mother briefly regained some consciousness, but shortly thereafter she slipped back into an unconscious state.

I had seen the brain scans, I knew the odds. Neurosurgery was an option, but the likelihood of her surviving it and recovering to live an active life with good quality was extremely low. And Amma was in a large hospital in the middle of the Covid crisis.

My siblings and I decided it would be best to get our mother out of that hospital environment. We were fortunate in that we knew of a small primary care facility where she could have access to nurses and a physician.

What many people don’t know is that a formal system of palliative care is rare in India and is not routinely incorporated into healthcare. In fact, the medications that we use in Australia for palliative care like sedatives and opiates are very tightly regulated in India and not readily available for good palliative care.

I was lucky enough to be able to speak with my colleagues here about the best practices we might use, even if those best practices were not known in India, and provide my siblings with advice. However, we still all had to be on the same page and that is always the tricky part.

When would we stop providing food through a tube? When would we stop giving intravenous fluids? What is the right amount of care to keep someone comfortable but also allow them to die?

If you don’t know about palliative care and have not talked about death, these decisions can be challenging. And they are made harder when you don’t know the patient’s wishes or have a desire to ‘fix’ everything with every option of treatment available, however futile they may be.

With my family it was different. We were in agreement on most things and for the most part we knew what our mother would have wanted us to do. She had held separate conversations with all of us about what she would have expected for herself. And my father, tough as it was for him, also accepted the reality of how Amma was – and trusted us to help him make the right decisions.

And this is what I would say to anyone going through a similar situation. Ask yourself, to the best of your knowledge, how would your relative have wanted to live on the other side of a significant medical intervention when faced with a seriously disabling or terminal illness? Ask the doctors what are all the options and what are the specific likely outcomes of each?

When the time came for my mother it was extremely peaceful, with my family by her side, and no discomfort. She would have been 80 this year, a wonderful person and she was really clear in her mind, always keeping people connected. In many ways, as she always did, she made it easier for us at the end.

Complete Article HERE!

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!

A Neuroscientist Prepares for Death

Lessons my terminal cancer has taught me about the mind

By David J. Linden

When a routine echocardiogram revealed a large mass next to my heart, the radiologist thought it might be a hiatal hernia—a portion of my stomach poking up through my diaphragm to press against the sac containing my heart.

“Chug this can of Diet Dr. Pepper and then hop up on the table for another echocardiogram before the soda bubbles in your stomach all pop.”

So I did. However, the resulting images showed that the mass did not contain the telltale signature of bursting bubbles in my stomach that would support a hernia diagnosis. A few weeks later, an MRI scan, which has much better resolution, revealed that the mass was actually contained within the pericardial sac and was quite large—about the volume of that soda can. Even with this large invader pressing on my heart, I had no symptoms and could exercise at full capacity. I felt great.

The doctors told me that the mass was most likely to be a teratoma, a clump of cells that is not typically malignant. Their outlook was sunny. Riffing on the musical South Pacific, my cardiologist said, “We’re gonna pop that orange right out of your chest and send you on your way.”

While I was recovering from surgery, the pathology report came back and the news was bad—it wasn’t a benign teratoma after all, but rather a malignant cancer called synovial sarcoma. Because of its location, embedded in my heart wall, the surgeon could not remove all of the cancer cells. Doing so would have rendered my heart unable to pump blood. The oncologist told me to expect to live an additional six to 18 months.

I was absolutely white-hot angry at the universe. Heart cancer? Who the hell gets heart cancer?! Is this some kind of horrible metaphor? This is what’s going to take me away from my beloved family, my cherished friends and colleagues? I simply couldn’t accept it. I was so mad, I could barely see.

[And now comes the part where I’m weeping while I type.]

Five years ago, I met Dena and we fell for each other hard. This wasn’t mere “chemistry”; it was more akin to particle physics—a revelation of the subatomic properties of love. Dena has uplifted me with her pure and unconditional affection, her kindness, beauty, optimism, and keen intelligence. She is the best wife anyone could want, and she is way better than I deserve. Leaving her behind will be the very hardest part of this whole awful situation.

Until the moment of that diagnosis six months ago, I had been the luckiest man in town. My twins, Jacob and Natalie, have been nothing but a delight for 25 years. I’ve been fortunate to have a long career in academic science with the freedom to pursue my own ideas, which is a gift like no other. My good friends are a constant source of joy and amusement. By any reasonable measure, I’ve had a great life, full of love, creativity, and adventure.

I may be dying, but I’m still a science nerd, and so I think about what preparing for death has taught me about the human mind. The first thing, which is obvious to most people but had to be brought home forcefully for me, is that it is possible, even easy, to occupy two seemingly contradictory mental states at the same time. I’m simultaneously furious at my terminal cancer and deeply grateful for all that life has given me. This runs counter to an old idea in neuroscience that we occupy one mental state at a time: We are either curious or fearful—we either “fight or flee” or “rest and digest” based on some overall modulation of the nervous system. But our human brains are more nuanced than that, and so we can easily inhabit multiple complex, even contradictory, cognitive and emotional states.

This leads me to a second insight: The deep truth of being human is that there is no objective experience. Our brains are not built to measure the absolute value of anything. All that we perceive and feel is colored by expectation, comparison, and circumstance. There is no pure sensation, only inference based on sensation. Thirty minutes fly by in a conversation with a good friend, but seem interminable when waiting in line at the DMV. That fat raise you got at work seems nice until you learn that your co-worker got one twice as large as yours. A caress from your sweetheart during a loving, connected time feels warm and delightful, but the very same touch delivered during the middle of a heated argument feels annoying and presumptuous, bordering on violation.

If someone had told me one year ago, when I was 59, that I had five years left to live, I would have been devastated and felt cheated by fate. Now the prospect of five more years strikes me as an impossible gift. With five more years, I could spend good times with all of my people, get some important work done, and still be able to travel and savor life’s sweetness. The point is that, in our minds, there is no such thing as objective value, even for something as fundamental as five years of life.

The final insight of my situation is more subtle, but it’s also the most important. Although I can prepare for death in all sorts of practical ways—getting my financial affairs in order, updating my will, writing reference letters to support the trainees in my lab after I’m gone—I cannot imagine the totality of my death, or the world without me in it, in any deep or meaningful way. My mind skitters across the surface of my impending death without truly engaging. I don’t think this is a personal failing. Rather, it’s a simple result of having a human brain.

The field of neuroscience has changed significantly in the 43 years since I joined it. I was taught that the brain is essentially reactive: Stimuli impinge on the sense organs (eyes, ears, skin, etc.), these signals are conveyed to the brain, a bit of computation happens, some neural decisions are made, and then impulses are sent along nerves to muscles, which contract or relax to produce behavior in the form of movement or speech. Now we know that rather than merely reacting to the external world, the brain spends much of its time and energy actively making predictions about the future—mostly the next few moments. Will that baseball flying through the air hit my head? Am I likely to become hungry soon? Is that approaching stranger a friend or a foe? These predictions are deeply rooted, automatic, and subconscious. They can’t be turned off through mere force of will.

And because our brains are organized to predict the near future, it presupposes that there will, in fact, be a near future. In this way, our brains are hardwired to prevent us from imagining the totality of death.

If I am allowed to speculate—and I hold that a dying person should be given such dispensation—I would contend that this basic cognitive limitation is not reserved for those of us who are preparing for imminent death, but rather is a widespread glitch that has profound implications for the cross-cultural practice of religious thought. Nearly every religion has the concept of an afterlife (or its cognitive cousin, reincarnation). Why are afterlife/reincarnation stories found all over the world? For the same reason we can’t truly imagine our own deaths: because our brains are built on the faulty premise that there will always be that next moment to predict. We cannot help but imagine that our own consciousness endures.

While not every faith has explicit afterlife/reincarnation stories (Judaism is a notable exception), most of the world’s major religions do, including Islam, Sikhism, Christianity, Daoism, Hinduism, and arguably, even Buddhism. Indeed, much religious thought takes the form of a bargain: Follow these rules in life, and you will be rewarded in the afterlife or with a favorable form of reincarnation or by melding with the divine. What would the world’s religions be like if our brains were not organized to imagine that consciousness endures? And how would this have changed our human cultures, which have been so strongly molded by religions and the conflicts between them?

While I ponder these questions, I am also mulling my own situation. I am not a person of faith, but as I prepare for death, I have a renewed respect for the persistent and broad appeal of afterlife/reincarnation stories and their ultimately neurobiological roots. I’m not sure whether, in the end, faith in afterlife/reincarnation stories is a feature or a bug of human cognition, but if it’s a bug, it’s one for which I have sympathy. After all, how wonderfully strange would it be to return as a manatee or a tapeworm? And what a special delight it would be to see Dena and my children again after I’m gone.

Complete Article HERE!

Black-owned hospice seeks to bring greater ease in dying to Black families

André Lee, administrator and co-founder of Heart and Soul Hospice, stands with Keisha Mason, director of nursing, in front of their office building last week in Nashville, Tenn.

By Blake Farmer

This time, it didn’t take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer’s disease in 2020, she had been reluctant until she saw what a help it was. And so when her husband, Willie, neared the end of his life, she embraced hospice again.

The Murphys’ house in a leafy Nashville neighborhood is their happy place — full of their treasures.

“He’s good to me — buys me anything I want,” she says, as she pulls a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.

Willie bought Mary the display case to help her to show off all the trinkets she picks up at estate sales.

Down the hall, Willie lies in their bed, now unable to speak. His heart is giving out.

“You gonna wake up for a minute?” she asks as she cradles his head. She pats his back while he clears his throat. “Cough it out.”

Mary has been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville that is focused on increasing the use of comfort care at the end of life by Black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they’re trying to serve.

In their application to obtain a certificate of need in Tennessee, the hospice owners made it clear that they are Black and that they intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data show that in Nashville, just 19% of the hospice patients are Black though they make up 27% of the population.

Though the area already had numerous hospice agencies, regulators granted the permission, based primarily on the value of educating an underserved group.

Hospice care helped Mary and Willie Murphy with a few baths a week, medication in the mail, and any medical equipment they needed. And there was the emotional support from a caring nurse.

In Mary Murphy’s first experience with hospice, her mother had suffered from dementia for decades, yet still when transitioning to hospice came up with her mother, Murphy had many concerns. She felt like she was giving up on her mom.

“My first thought was death,” she says.

National data shows Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with white patients for whom the figure is 54%, according to data compiled annually by the National Hospice and Palliative Care Organization.

Murphy’s mother survived nearly three years on hospice. The benefit is meant for those in the last six months of life, but predicting when the end will come is difficult, especially with dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.

Murphy did most of the caregiving — which can be overwhelming — but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.

And most important to Murphy was the emotional support, which came mostly from her hospice nurse.

“Wasn’t no doctor going to come here, hold my hand, stay here until the funeral home came for her,” she says about the day her mother died.

This year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She’d already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn’t breathing.

“If you don’t feel like, ‘Oh my God, thank God I have hospice,’ if you can’t say that, then we’re doing something wrong,” says Keisha Mason, who is Heart and Soul’s director of nursing.

Mason, like Murphy, is Black and says that in her view, there’s nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it’s basically free to patients — paid for by Medicare, Medicaid and most private health plans.

“I say to them, ‘If you see a bill, then call us, because you should not,’ ” she says.

As Mason has helped launch this new hospice agency, she’s begun using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.

“Just as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,” she says.

The investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit, Nashville pastor the Rev. Sandy McClain, and André Lee, who is a former hospital administrator on the campus of Nashville’s Meharry Medical College, a historically Black institution.

Lee and Turner also started a Black-focused hospice agency in Michigan and have plans to replicate the model in other states.

Lee says more families need to consider home hospice as an alternative for end-of-life care. Nursing homes are pricey. And even with Medicare, a hospital bill could be hefty.

“You’ll go in there and they’ll eat you alive,” he says. “I hate to say [something] bad about hospitals, but it’s true.”

Hospice research hasn’t come up with clear reasons why there’s a gap between white and Black families’ use of the benefit. Some speculate it’s related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.

The hospice industry’s national trade group, the NHCPO, released a diversity and inclusion toolkit and a guide for how to reach more Black patients this year. It recommends connecting with influential DJs and partnering with Black pastors. But also just hiring more Black nurses.

Lee says it’s not overly complicated.

“A lot of hospices don’t employ enough Black people,” he says. “We all feel comfortable when you see someone over there that looks like you.”

Well-established hospice agencies have been attempting to minimize any barriers with their own diversity initiatives. Michelle Drayton of Visiting Nurse Service of New York says her large agency has been meeting with ministers who counsel families dealing with failing health.

“Many of them did not fully understand what hospice was,” she says. “They had many of the same sort of misperceptions.”

Whether it’s an upstart hospice company or one of the oldest in the country, everyone still has a lot of end-of-life educating to do to bridge the racial gap, Drayton says. “We’re not just handing out a brochure,” she adds.

Complete Article HERE!

Congressman Asks Colleagues To Demand DEA Allow Psilocybin Treatment For Terminal Patients

By

A congressman is asking his fellow lawmakers to join him in requesting that the Drug Enforcement Administration (DEA) allow terminally ill patients to use psilocybin as an investigational treatment without the fear of federal prosecution.

A new Dear Colleague letter that’s being circulated by Rep. Earl Blumenauer (D-OR) notes that there are state and federal right-to-try (RTT) laws that should make it so certain patients can obtain the psychedelic given that it’s shown early potential in ongoing clinical trials.

Yet DEA has denied access, resulting in a lawsuit that was filed in March by a Washington State doctor who sought federal guidance to treat terminal patients with psilocybin mushrooms and was told there wasn’t a legal avenue for him to do so.

“There has been a growing body of evidence in recent years pointing to the safety and effectiveness of psilocybin assisted therapy as a potential method to provide care to individuals with treatment-resistant depression and/or anxiety,” Blumenauer wrote to fellow lawmakers.

“However, even with these promising advancements, the pace of regulatory approval has been far too slow for a naturally occurring substance that has evidence of having been safely used by humans for therapeutic uses for thousands of years,” the congressman said. “This is even more true when the quality of care and treatment for terminally ill individuals is resultingly limited and impacted.”

Congress and 41 states have adopted right-to-try laws, which allow patients with terminal conditions to try investigational medications that have not been approved for general use. The letter says DEA has “has failed to abide” by the law.

“I hope you will join me in urging that the DEA takes quick action to remediate these concerns and end their obstruction of access to end-of-life care,” Blumenauer said.

The lawsuit against DEA is currently before the U.S. Court of Appeals for the Ninth Circuit, which heard oral arguments in the case in September. Washington State’s attorney general’s office joined the plaintiffs in support of psilocybin access. DEA argued that the court should dismiss the suit because it lacked jurisdiction.

Blumenauer is asking his colleagues to sign onto a letter addressed to DEA Administrator Anne Milgram, who was appointed by President Joe Biden and confirmed by the Senate over the summer.

“We strongly believe that our constituents suffering such illnesses should have access to this investigational drug should they decide to pursue such a course of treatment and we urge you to take quick action to ensure that the DEA accommodates federal and state RTT laws and allows terminally ill patients to receive psilocybin for therapeutic use,” it says.

The lawsuit—which was brought by an oncology clinic, the Advanced Integrative Medical Science (AIMS) Institute—”can, and ought to be, quickly settled in a manner which addresses DEA’s legitimate concerns about ensuring adequate security to prevent diversion, while enabling dying cancer patients such as those in the AIMS case access to psilocybin,” the letter says.

“Urgent action is needed to ensure that patients currently suffering terminal illness can elect treatment involving psilocybin,” it concludes. “We urge you to take quick action to ensure that the DEA accommodates enacted RTT law and allows terminally ill patients to receive psilocybin for therapeutic use. We appreciate your attention to this urgent matter.”

Sunil Aggarwal, the AIMS doctor behind the lawsuit, told Marijuana Moment that he is “so heartened and grateful for Representative Blumenauer’s leadership here to help my patients who have advancing serious and life-threatening cancer to try psilocybin-assisted therapy, as is their right, to palliate and relieve suffering.”

“High quality clinical evidence has shown that psilocybin-assisted therapy can help generate awe, connection, and joy, and these can impact immune function, mood, demoralization, and potentially prognosis,” he said. “The time is now for all members of Congress in Washington State and beyond to sign onto this letter that implores the US DEA to respect and protect the right to try law’s promises for my patients and others like them. It is the right thing to do, and this is an urgent and time-sensitive matter.”

The Blumenauer-led letter to DEA closes for signatures on Friday. It’s not clear when it will be sent to the agency, but it’s currently dated for some time in December.

Blumenauer separately told Marijuana Moment on Thursday that he’s “excited” about advancements in psychedelics research, as well as the implementation of a psilocybin therapy program that’s being set up in his home state of Oregon, where voters approved the historic reform during last year’s election.

Oregon’s initiative is “a model about how to take advantage of the this therapy for people who desperately need it,” he said. “There are a number of opportunities to demonstrate the power of this therapy. And we are, in a very thoughtful and systematic way, implementing that in Oregon to show how it can result.”

“I think this discussion needs to take place on Capitol Hill—and it’s something that I would like to occur early in the new the new year,” Blumenauer said. “Let people understand the potential, using opportunities now for people in the late stages of life to be able to try this using federal legislation.”

Complete Article HERE!

ePOLST Registries: Moving into the Digital Age

Providers should be aware of and be involved in the conversation about these upcoming registries as they will interact with them frequently.

The upper half of the California POLST.

By ,

You arrive on scene to a call of a 72-year-old woman with metastatic lung cancer who has difficulty breathing at her nursing facility. The woman is unresponsive and thready pulses become difficult to palpate. The nursing facility staff is unable to locate any paper POLST forms. What are your next steps?

The POLST program – Physician Orders for Life-Sustaining treatment – was developed by medical ethicists in Oregon in 1991 as a tool to help honor patients’ wishes for end-of-life treatment.1 Today, all 50 states and Washington, DC, have existing POLST programs with varying functional capacities and names for the actual form (i.e. Medical Order for Life Sustaining Treatment (MOLST), Physician Order for Scope of Treatment (POST) etc.). POLST forms are most useful for people who are medically frail or seriously ill from chronic, progressive health conditions. They contain important, actionable medical orders that are portable for use across health settings – such as emergency medical services (EMS), emergency departments and long-term care facilities.

Several studies have demonstrated the efficacy of POLST forms over the years. POLST forms have been shown to have significant advantages over traditional methods to communicate preferences regarding life-sustaining treatments,2 and their use has been shown to result in a very high percentage of patients receiving care consistent with their prior expressed wishes.3 However, their use is not without barriers. One key barrier can be their inaccessibility. The form, if not readily available to health care providers, isn’t helpful in time-critical situations. A 2004 survey of Oregon EMTs showed a quarter of respondents stated that they were unable to successfully find a POLST in a timely manner the last time they had expected to do so.4 In 2009, Oregon legislation introduced an electronic POLST registry. This was to address EMS challenges in accessing or locating original POLST orders when they arrived on the scene of a medical emergency. By 2015-2016, nearly half of all deaths in Oregon had an active form in their electronic registry.5 As of 2020, the Oregon Registry has almost half a million POLST forms.6

California’s Assembly Bill No. 1234 was introduced by Assembly Member Arambula (D-Fresno) in February 2021 and would require the California Health and Human Services Agency to establish a statewide electronic POLST registry system.7 It is being backed by the Coalition for Compassionate Care of California (CCCC) and Arambula, himself, is a prior emergency physician. In addition to creation of a statewide registry, the bill lays out a timeline for its implementation (2024-2026), ensures that an electronic POLST (ePOLST) would have the same legal standing as a paper form, and that electronic signatures could be used.

As of 2020, at least 10 states have started development of or already created statewide registries.8 Some registries have capability for electronic form completion, some function simply as databases, and others have a hybrid system. Input from pilot studies that have been performed in San Diego and Contra Costa County along with experiences with ePOLST registries from other states are helping shape what California’s statewide registry will eventually look like.

The current progress of POLST state registries as of April 2021.
The current progress of POLST state registries as of April 2021.

ePOLST registries have several advantages over the traditional POLST. The main advantage being their universal accessibility by healthcare providers and patients. Other potential advantages include the ability to provide educational material to patients at time of form completion, development of mechanisms to prevent incomplete or incongruent (i.e. Full Code + Do Not Intubate) form submissions,9 and remote signing. However, there are several potential pitfalls to be mindful of – such as assuring the repositories are HIPPA-compliant, easily searchable, interface with local health information exchanges, and have back-up mechanisms for access (i.e. call center) in case of technology failure.

EMS will be at the forefront of interfacing with these registries and as such should be involved in the conversation regarding their development. Properly developed and implemented, a state-wide ePOLST has the opportunity to improve EMS and emergency departments provider POLST access difficulties, facilitate accurate POLST completion, and improve our ability to provide patient’s with the care they want near the end-of-life.

References

  1. National POLST: History [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/history/
  2. Hickman SE, Nelson CA, Perrin NA, Moss AH, Hammes BJ, Tolle SW. A comparison of methods to communicate treatment preferences in nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Am Geriatr Soc. 2010 Jul;58(7):1241-8. doi: 10.1111/j.1532-5415.2010.02955.x. PMID: 20649687; PMCID: PMC2963454.
  3. Hopping-Winn J, Mullin J, March L, Caughey M, Stern M, Jarvie J. The Progression of End-of-Life Wishes and Concordance with End-of-Life Care. J Palliat Med. 2018 Apr;21(4):541-545. doi: 10.1089/jpm.2017.0317. Epub 2018 Jan 3. PMID: 29298109.
  4. Zive DM, Schmidt TA. Pathways to POLST registry development: Lessons learned. Portland, OR: Center for Ethics in Health Care Oregon Health & Science University. 2012.
  5. Dotson A, Broderick A, Steinmetz V, Weir J, Anthony S. (2019) California’s POLST electronic registry pilot: Lessons for all states. Oakland, CA: California Health Care Foundation. Available from: https://www.chcf.org/wp-content/uploads/2019/09/CaliforniasPOLSTElectronicRegistryPilot.pdf
  6. Dotson, A. (2020). Oregon POLST registry annual report. Portland, Oregon: Oregon POLST Registry. Available from: https://orpolstregistry.files.wordpress.com/2021/03/2020-oregon-polst-registry-annual-report.pdf
  7. Physician Orders for Life Sustaining Treatment forms: registry, Cal. Assemb. B. 1234 (2021-2022)
  8. National POLST: Registry Information [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/wp-content/uploads/2021/03/2021.03-National-POLST-Registries-Matrix.pdf
  9. POLST California: POLST eRegistry in California: Challenges and opportunities [Internet]. Sacramento: Coalition for compassionate care of California; c2021. [cited 2021, Nov 3]. Available from: https://capolst.org/wp-content/uploads/2020/11/POLST-INTERVIEW-REPORT_11-22-19.pdf

Complete Article HERE!