Category: Pain Control

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The 11 qualities of a good death

Opening up about death can make it easier for ourselves and our loved ones.

By Jordan Rosenfeld

Nearly nine years ago, I received a call from my stepmother summoning me to my grandmother’s house. At 92 years old, my Oma had lost most of her sight and hearing, and with it the joy she took in reading and listening to music. She spent most of her time in a wheelchair because small strokes had left her prone to falling, and she was never comfortable in bed. Now she had told her caregiver that she was “ready to die,” and our family believed she meant it.

I made it to my grandmother in time to spend an entire day at her bedside, along with other members of our family. We told her she was free to go, and she quietly slipped away that night. It was, I thought, a good death. But beyond that experience, I haven’t had much insight into what it would look like to make peace with the end of one’s life.

A recent study published in the American Journal of Geriatric Psychiatry, which gathered data from terminal patients, family members and health care providers, aims to clarify what a good death looks like. The literature review identifies 11 core themes associated with dying well, culled from 36 studies:

  • Having control over the specific dying process
  • Pain-free status
  • Engagement with religion or spirituality
  • Experiencing emotional well-being
  • Having a sense of life completion or legacy
  • Having a choice in treatment preferences
  • Experiencing dignity in the dying process
  • Having family present and saying goodbye
  • Quality of life during the dying process
  • A good relationship with health care providers
  • A miscellaneous “other” category (cultural specifics, having pets nearby, health care costs, etc.)

In laying out the factors that tend to be associated with a peaceful dying process, this research has the potential to help us better prepare for the deaths of our loved ones—and for our own.

Choosing the way we die

Americans don’t like to talk about death. But having tough conversations about end-of-life care well in advance can help dying people cope later on, according to Emily Meier, lead author of the study and a psychologist who worked in palliative care at the University of California San Diego’s Morres Cancer Center. Her research suggests that people who put their wishes in writing and talk to their loved ones about how they want to die can retain some sense of agency in the face of the inevitable, and even find meaning in the dying process.

Natasha Billawala, a writer in Los Angeles, had many conversations with her mother before she passed away from complications of the neurodegenerative disease ALS (amytropic lateral sclerosis) in December 2015. Both of her parents had put their advanced directives into writing years before their deaths, noting procedures they did and didn’t want and what kinds of decisions their children could make on their behalf. “When the end came it was immensely helpful to know what she wanted,” Billawala says.

When asked if her mother had a “good death,” according to the UCSD study’s criteria, Billawalla says, “Yes and no. It’s complicated because she didn’t want to go. Because she lost the ability to swallow, the opportunity to make the last decision was taken from her.” Her mother might have been able to make more choices about how she died if her loss of functions had not hastened her demise. And yet Billawalla calls witnessing her mother’s death “a gift,” because “there was so much love and a focus on her that was beautiful, that I can carry with me forever.”

Pain-free status

Dying can take a long time—which sometimes means that patients opt for pain medication or removing life-support systems in order to ease suffering. Billawala’s mother spent her final days on morphine to keep her comfortable. My Oma, too, had opiate pain relief for chronic pain.

Her death wasn’t exactly easy. At the end of her life, her lungs were working hard, her limbs twitching, her eyes rolling behind lids like an active dreamer. But I do think it’s safe to say that she was as comfortable as she could possibly be—far more so than if she’d been rushed to the hospital and hooked up to machines. It’s no surprise that many people, at the end, eschew interventions and simply wish to go in peace.

Emotional well-being

Author and physician Atul Gwande summarizes well-being as “the reasons one wishes to be alive” in his recent book Being Mortal. This may involve simple pleasures like going to the symphony, taking vigorous hikes or reading books He adds: “Whenever serious sickness or injury strikes and your body or mind breaks down … What are the trade-offs you are willing to make and not willing to make?”

Kriss Kevorkian, an expert in grief, death and dying, encourages those she educates to write advance directives with the following question in mind: “What do you want your quality of life to be?”

The hospital setting alone can create anxiety or negative feelings in an ill or dying person, so Kevorkian suggests family members try to create a familiar ambience through music, favorite scents, or conversation, among other options, or consider whether it’s better to bring the dying person home instead. Billawalla says that the most important thing to her mother was to have her children with her at the end. For many dying people, having family around can provide a sense of peace.

Opening up about death and dying

People who openly talk about death when they are in good health have a greater chance of facing their own deaths with equanimity. To that end, Meier is a fan of death cafés, which have sprung up around the nation. These informal discussion groups aim to help people get more comfortable talking about dying, normalizing such discussions over tea or cake. It’s a platform where people can chat about everything from the afterlife (or lack thereof) to cremation to mourning rituals.

Doctors and nurses must also confront their own resistance to openly discussing death, according to Dilip Jeste, a coauthor of the study and geriatric psychiatrist with the University of California San Diego Stein Institute for Research on Aging. “As physicians we are taught to think about how to prolong life,” he says. That’s why death becomes [seen as] a failure on our part.” While doctors overwhelmingly believe in the importance of end-of-life conversations, a recent US poll found that nearly half (46%) of doctors and specialists feel unsure about how to broach the subject with their own patients. Perhaps, in coming to a better understanding of what a good death looks like, both doctors and laypeople will be better prepared to help people through this final, natural transition.

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Death and psychedelics

— How science is reviving this ancient connection

By

In November 1963, the writer and psychedelic explorer Aldous Huxley laid in bed, unable to speak. He was dying of cancer. One of his final acts was to pass a handwritten note to his wife Laura. 

His famous last words: “LSD, 100 µg, intramuscular.”

It was Huxley’s dying wish: a large dose of acid, please. Laura Huxley fulfilled the request twice during her husband’s final hours.

First synthesized 25 years before Huxley’s death, LSD was still legal in 1963. Scientists were studying it as a potential treatment for alcoholism and other ailments, as well as investigating its similarity to other psychedelics. It wasn’t until 1968 that the federal government outlawed these drugs due to their association with the cultural turbulence of the 1960s.

Today, several decades later, terminal cancer patients are once again taking psychedelics. This time around the drugs are being administered by doctors and scientists in controlled settings—and they are not microdoses. The results of this research have been nothing short of remarkable.

Laura Archera Huxley, 40-year-old musician and filmmaker, and husband Aldous Huxley, 61-year-old British novelist, pictured at their Hollywood home in Hollywood in 1956. On his deathbed seven years later, Huxley asked his wife for a massive dose of LSD.

Alleviating anxiety and despair

Terminal patients often suffer from feelings of intense anxiety and despair after receiving their diagnoses. For many, this is just too much to bear. The overall suicide risk for these patients is double or more compared to the general population, with suicide typically occurring in the first year after diagnosis.

Terminal patients have twice the suicide risk of the general public. Psychedelics may help reduce their fear and suffering.

That’s where psychedelic therapy may help. After a single large dose of psilocybin, taken in a curated space and supervised by a pair of doctors, many patients report feeling reborn. It’s not that the underlying physical disease has been cured. Rather, the drug prompts a shift in the theme of their emotional self-narrative—from anxiety and despair to acceptance and gratitude.

It may seem curious to think about psychedelic drugs, often associated with hippies and the Grateful Dead, as clinical-grade tools for overcoming our primordial aversion to death. But maybe it shouldn’t be. Maybe this is only surprising if your window of historical perspective is too narrow. Maybe these “novel findings” are, in a sense, a return to somewhere we’ve been before.

Psychedelics at the dawn of civilization

In late 2020 I spoke to Brian Muraresku, author of The Immortality Key: The Secret History of the Religion With No Name, about the use of psychoactive plant medicine throughout antiquity. Our podcast conversation covers this history in more detail, but it’s clear that humanity’s relationship with psychoactive plants extends back at least to ancient Greece—if not further. It’s hard to look at prehistoric cave paintings like the Tassili mushroom figure and not wonder if psychedelics played a part in their creation.

Western philosophy may have developed with help from psychedelics as well. In Plato’s well-known allegory of the cave, a group of prisoners live chained to a cave wall, seeing nothing but the shadows of objects projected onto it by fire. The shadows are their reality; they know nothing outside of it. Philosophers, Plato states, are like prisoners freed from the cave. They know the shadows are mere reflections, and they aim to understand deeper levels of reality.

Plato’s philosophical ideas might have been influenced by psychedelic experiences.

Was Plato tripping?

If that sounds like someone who’s explored those deeper levels with psychedelic assistance…well, maybe it was. In his book, Brian Muraresku explores the significance of the Eleusinian Mysteries, secret ceremonies that involved death and rebirth. For centuries, philosophers and mystics traveled to the Greek town of Eleusis to partake in a ritual that involved an elixir known as pharmakon athanasias, “the drug of immortality.”

“Within the toolkit of the archaic techniques of ecstasy–plant medicine just being one among many–something you find again and again, in Ancient Greece and other traditional societies, is this sense that to ‘die’ in this lifetime, or achieve a sense of timelessness in the here and now, is the real trick.” -Brian Muraresku

Contemporary archaeologists, digging outside Eleusis, have unearthed ancient chalices containing a residue of beer and Ergotized grain. Ergot is a fungus that grows on grain. It produces alkaloids similar to LSD. It’s possible, then, that influential thinkers like Plato were inspired by genuine psychedelic experiences.

This connection between psychedelics and death didn’t end with Eleusis. It survived, often repressed and hidden from view, right through the time of Aldous Huxley.

The connection re-emerges in the 1960s

In the 1960s, Timothy Leary co-wrote a book called The Psychedelic Experience: A manual based on the Tibetan Book of the Dead. Leary, the exiled Harvard professor and psychedelic guru, dedicated the book, “with profound admiration and gratitude,” to Aldous Huxley. It opens with a passage from The Doors of Perception, Huxley’s essay on the psychedelic experience. Huxley is asked if he can fix his attention on what the Tibetan Book of the Dead calls the Clear Light. He answers yes, “but only if there were somebody there to tell me about the Clear Light.”

It couldn’t be done alone. That’s the point of the Tibetan ritual, he says: You need “somebody sitting there all the time telling you what’s what.”

Huxley was describing a trip sitter, someone who guides a person along their psychedelic journey. Sometimes it’s an ayauasquero in the heart of the Amazon. Sometimes it’s a doctor holding your hand in a hospital.

Timothy Leary, shown at home in California in 1979, was deeply influenced by Huxley’s work.

Seeking rebirth within the mind

In his book, Leary grounded Eastern spiritual concepts in the understanding of neurology we had at the time. The states of consciousness achieved by meditation masters and those induced by three hits of Orange Sunshine, he wrote, may actually be the same. Both involve dissolving the ego (“death”) and allowing it to recrystallize as the default mode of consciousness returns (“rebirth”). 

Leary wasn’t talking about magic. Scientists know these as “non-ordinary brain states,” inducible by rigorous attentional practice (meditation), pharmacological intervention (psychedelics), and organic decay (dying).

The ability of psychedelics to induce these remarkable brain states may also be why they’re showing such promise in alleviating the very ordinary fear of death.

Today’s psychedelic treatments: Coping with death

So what, exactly, has recent research on psilocybin as an end-of-life anxiety treatment involved?

A few small studies have seen psilocybin administered to dozens of cancer patients. They’ve been conducted in a randomized, double-blind, placebo-controlled fashion. In general, a large majority of patients showed sustained, clinically significant reductions in measures of psychosocial stress and increased levels of overall well-being.

For example, in one study, 80% of the patients found that a single dose of psilocybin quickly relieved their distress. Remarkably, in some patients that positive effect lasted for more than six months.

Sprouting new physical connections

What’s going on at the neuronal level to produce those changes? We don’t know for sure, but some preclinical research has given us a hint. Both psilocybin and LSD have been shown to induce rapid and lasting antidepressant effects in lab animals.

Early studies hint at how psychedelics may produce positive changes in the brain.

Early indications are that psychedelics may allow brain circuits to rapidly sprout new physical connections. This is exciting, but again: These are non-human studies, and it’s early.

It’s gratifying to see any of these studies happening, frankly. This is research that’s been stalled by the Schedule I status of psychedelics for half a century. Much of this work requires obtaining a special federal waiver to study banned substances, which slows progress.

Potential help for end-of-life patients

Fortunately, the FDA recently designated psilocybin therapy as a “breakthrough therapy” and the DEA has proposed increasing the supply of psilocybin for research. This should speed up the rate at which we understand the clinical efficacy of psilocybin and related psychedelics.

Here’s more good news: In terms of psilocybin’s efficacy as a treatment for end-of-life anxiety, larger human trials are already underway.

Dr. Stephen Ross, one of the field’s leading researchers, has described the significance of this work: “If larger clinical trials prove successful, then we could ultimately have available a safe, effective, and inexpensive medication—dispensed under strict control—to alleviate the distress that increases suicide rates among cancer patients.”

Huxley: Ahead of his time

In one sense, Aldous Huxley was ahead of his time. More than a half-century before today’s renaissance in psychedelic research, his own experiences had evidently brought him to the conclusion that the best way to experience death was in a psychedelic trance.

In another sense, though, Huxley was one in a long line of creators stretching back to ancient Greek philosophers and perhaps even to prehistoric cave artists. They may all have used psychedelics to catalyze their outward creativity and comfort their inner distress.

Huxley titled his famous introspective essay, The Doors of Perception, after a quote from the English poet, William Blake: “If the doors of perception were cleansed everything would appear to [us] as it is, infinite.”

We will never know what he experienced in the final hours before his death, after handing that note to his wife. I like to think that for him, the last breath seemed to last forever.

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What to Expect With End-Stage Heart Failure

By Rachael Zimlich, BSN, RN

End-stage heart failure is the most advanced stage of congestive heart failure. At this point, treatments don’t offer too much symptom relief.

There are four stages of heart failure. The first two stages—A and B—are considered pre-heart failure, where lifestyle changes and medications can largely keep the condition at bay. By stage C, you may have symptoms like swollen limbs, fatigue, and shortness of breath with physical activity.

By stage D, the heart has experienced significant damage, and it has begun to affect how other organs work, like the kidneys. Treatment for this stage includes surgery, heart transplant, or ventricular assist devices. You may also pursue hospice care—treatment based on comfort alone.

Signs

Congestive heart failure is usually thought to be a condition of the heart, but it can affect other organs as it progresses. It continues to get worse with each flare-up, or exacerbation, and 90% of people with the condition eventually die of pump failure.1 This is when the heart can no longer function as a pump, and circulation of blood and oxygen through the body stops.

Symptoms of end-stage heart failure stem from this deterioration of the heart’s pumping power. As the heart grows weaker, it can’t pump enough blood to other parts of the body, and blood and fluids begin to back up.

Tissues and organs that don’t receive enough blood, oxygen, and nutrients fail to work effectively. The symptoms of end-stage heart failure are caused by the body’s attempt to compensate for a weakened heart.

Symptoms of end-stage heart failure are similar to those in stage C, only they are more severe. They may include:2

  • Swelling and fluid collection under the skin
  • Shortness of breath, even at rest
  • Pulmonary edema, where excess fluid fills the lungs’ air sacs
  • Weakness and fatigue, especially with physical activities
  • Low blood pressure
  • Malnutrition, or failure of your body to absorb nutrients
  • Sudden weight gain
  • Increased nighttime urination

Coping

As your end-stage heart failure progresses, it will become more difficult to perform routine daily activities like bathing or walking through your house. You may require home care, a move to a skilled nursing facility, or frequent or continued hospitalization.

At advanced stages, you may need to be hospitalized for intravenous medications, oxygen therapy, or other treatments. If you don’t improve with hospitalization or need skilled nursing care, your medical team may recommend hospice or palliative care:

  • Palliative care: Contrary to what many people believe, palliative care is not necessarily end-of-life care. Palliative care focuses on relieving symptoms and discomfort caused by a chronic illness. Treatments continue with palliative care in many cases, but there is a greater focus on improving the quality of life. In people with heart failure, a palliative care visit during a hospital stay for heart failure was linked to decreased future hospital stays and intensive care unit admissions, and fewer aggressive treatments.3
  • Hospice care: Hospice care also focuses on comfort and quality of life, but you also make the decision with hospice care to forgo additional invasive or lifesaving measures.

Prognosis

Only about half of the people who have heart failure that’s in stage C or beyond live for five years after their diagnosis.3 More than a third of people with advanced heart failure die within a year of being hospitalized.

People who receive heart transplants or a ventricular assist device, which can help the heart pump out blood as it grows weaker, have a better outlook. While life expectancy on a ventricular assist device is limited, people can often expect to live 10 years or more after a successful cardiac transplant procedure.1

The American Heart Association (AHA) supports frequent conversations between you and your medical team in end-stage heart failure. Shared decision making is a partnership between you and your doctor where you openly and regularly discuss your condition, treatment options, and prognosis.

To help with the shared decision-making process, AHA offers the following checklist:4

  • Annual review of your condition and progress, current treatment goals, and plans to address emergencies and worsening of your condition
  • Review of treatment goals after “milestone” acute events like a hospitalization, heart attack, or need for defibrillator shock
  • Open and honest conversations about the side effects and quality of life impact that different treatments or worsening of symptoms may cause
  • Discussions about the impact of your condition and treatment options on you and your caregivers or family
  • Palliative care alongside medical treatment to help manage symptoms
  • Hospice care or other end-of-life planning to make sure your wishes are met when your condition advances

What Does Moving to Hospice Care Involve?

If you and your family have made the decision to pursue hospice care while receiving inpatient care, a case manager or social worker can help facilitate the process. If you are at home and would like to transition to hospice care, hospice agencies can help make the arrangements. Hospice agencies will review your needs and have a doctor order the appropriate medications for you. These medications will focus not on treating your condition, but on managing your symptoms and comfort as much as possible.

Caregiver Support

Supporting and caring for family and friends with end-stage heart failure can be difficult. At advanced heart failure stages, a person with this condition will need help with their daily activities.

Coping with the demands of caregiving can be difficult. If you are a caregiver, enlist the help of others, and involve your own healthcare providers in creating a plan that keeps your health and well-being in mind. There are services that can offer respite care, or temporary medical care for the people you care for when you need a break.

Palliative and hospice care can help caregivers cope as their loved one’s condition deteriorates, and they can find ways to make them comfortable as much as possible. The American Heart Association also recommends that caregivers find support groups in their community or online.5

Frequently Asked Questions

What is end-stage heart failure?

End-stage heart failure is the most advanced stage of heart failure. At this stage, medications and treatments can no longer improve the symptoms or prognosis. The focus of treatment at this stage will be to manage your symptoms as best as you can and prioritize comfort.

What are the signs of end-stage heart failure?

In end-stage heart failure, you may experience severe shortness of breath, swelling, and fatigue. It may become difficult to live independently and meet your own daily needs.

What should I expect at end-stage heart failure?

In end-stage heart failure, you may need frequent hospitalizations, and each acute event may make your condition worse. Your healthcare team may suggest skilled nursing, palliative, or hospice care to help you manage your condition.

How long can you live with end-stage heart failure?

Heart failure is a chronic, progressive condition that worsens with each flare-up. Your outlook and prognosis are better if you are healthy overall, you have been following your treatment plan, and you are responding well to your treatments. Being willing to pursue invasive treatments like a heart transplant will also increase your life expectancy.

Summary

End-stage heart failure is the most advanced form of heart failure, where your heart cannot pump blood effectively to meet your body’s needs. Treatments that have helped you manage earlier stages of the disease may not work anymore, and your healthcare provider will prioritize alleviating the discomfort of your symptoms. It’s still important to stay healthy because that could potentially improve your prognosis.
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Can Psychedelics Help Make Dying Easier?

“I need to be in a space where I am not hopeless,” says one terminal cancer patient who is suing the Justice Department and the DEA for her right to use psilocybin

By Shelby Hartman & Madison Margolin

Erinn Baldeschwiler had already been having a rough go of it. A mother of two teens, she was going through a divorce, moving out of her house, and splitting from her business partner all as the severity of the Covid-19 pandemic was becoming a reality. Amid it all, she was diagnosed with stage four, triple-negative metastatic breast cancer. The doctors told her that even with chemotherapy every week — something which she knew would severely impact her quality of life — and immunotherapy every two weeks, she likely had about two years to live.

“It was devastating,” says Baldeschwiler, 49. “I thought, what if I’m not going to be here for my kids? A dear friend passed very suddenly, unexpectedly from cancer a few years back and I just know the pain that it leaves behind. It was really, really heavy.”

Now Baldeschwiler, along with Michal Bloom, another cancer patient diagnosed with stage 3 ovarian cancer in 2017, their palliative care physician, Dr. Sunil Aggarwal, and his clinic, AIMS Institute, are suing the Department of Justice and the Drug Enforcement Administration. Baldeschwiler and Bloom want to try psilocybin, the psychoactive component in psychedelic mushrooms, in a therapeutic context for what’s sometimes called “end-of-life distress,” depression, anxiety, and other mental health challenges that can come along with a terminal diagnosis. 

Kathryn Tucker, one of seven attorneys on the case, says Baldeschwiler and Bloom have the right to access psilocybin under Washington state’s Right to Try law, a law which permits patients with a terminal illness to access drugs that are currently being researched, but not yet approved. The federal government, she says, is wrongfully interfering with that right.

According to Tucker, who has devoted much of her career to helping pass and reform legislation meant to ease the suffering of those at the end of their lives, states are the primary authority for the regulation of medicine. And yet, in January, Tucker says, when she wrote to the Drug Enforcement Administration, on behalf of  Aggarwal, Baldeschwiler, and Bloom, asking them how they should go about accessing psilocybin, the administration wrote back saying they couldn’t because psilocybin is a Schedule I drug on the Controlled Substances Act, the most restrictive category defined as drugs with “no medical use” and a “high potential for abuse.” (Typically, physicians with terminal patients would go straight to a manufacturer to get access to a drug under a state’s Right to Try law, but they needed to write to the Drug Enforcement Administration about the process for access since psilocybin is federally illegal.)

In addition to Washington state, 40 states have Right to Try laws, although they’re all worded slightly differently. (Some use language like “terminally ill” while others say “life threatening,” which could change who qualifies.) Overlaid on top of these state Right to Try laws is a federal Right to Try law, which President Trump signed in 2018. In this case, Tucker and the fellow attorneys are primarily focused on patients’ rights under Washington’s Right to Try law, but are using the federal Right to Try law to bolster their argument.

Both the Washington law and the federal law state that terminal patients can access drugs that are not yet approved by the Food and Drug Administration so long as they’ve successfully made it through the first phase of an FDA-approved clinical trial and are currently being investigated. Psilocybin is currently in the final phase of research before FDA approval, and has shown so much promise for treatment-resistant depression and major depressive disorder that it’s been granted “breakthrough therapy” status by the FDA.

“The DEA just did not know about or did not understand Right to Try and this lawsuit is something of an educational vehicle,” Tucker says. Yes, she says, psilocybin is on the Controlled Substances Act, but in the hierarchy of legislation, The Federal Food, Drug, and Cosmetic Act, which Right to Try falls under, trumps the Controlled Substances Act. Tucker says DEA officials just don’t understand that or are behaving as though they don’t. (The Department of Justice declined to comment for this story.)

“I don’t want my diagnosis to be upsetting and dark and hopeless for my kids,” says Baldeschwiler. “So I need to be in a space where I am not hopeless and there is peace. I know for certain if I’m negative and ‘woe is me,’ and desperate and have feelings of like ‘I just want to check out,’ that’s going to make it a hundred times worse.”

Baldeschwiler first got the idea to do psychedelic-assisted psychotherapy from Aggarwal, who she’d found after looking around for more holistic treatment plans in the Seattle, Washington area. Aggarwal discovered what he says is the extraordinary potential of psilocybin to help cancer patients when working with the psilocybin research group at New York University.

Researchers, going back to the late 1950s, found psychedelics such as psilocybin and LSD showed promise for end-of-life distress as well as a host of other mental health conditions, from alcoholism to trauma. Much of this research, however, is not considered valid by the Food and Drug Administration because it did not follow their current protocols.

After Richard Nixon signed the Controlled Substances Act into law in 1970, there was essentially a decades-long ban on psychedelic research. It was a landmark study, published in the Journal of Psychopharmacology, in 2006 — showing psilocybin holds promise for end-of-life distress in cancer patients — that largely jumpstarted what’s now known as the “Psychedelic Renaissance,” the second wave of psychedelic research in the U.S. since the 60s. The study found that after two or three psilocybin sessions, a majority of participants had significant and positive changes in their mood, while 33 percent rated the experience as the most spiritually significant experience of their life, comparable to the birth of a first child or the death of a parent. Since then, this research has continued with the same results in trials at Johns Hopkins and New York University.

“Many, many patients come to me wanting this,” says Aggarwal of psilocybin-assisted psychotherapy. “They read about it in the news or in Michael Pollan’s book.” He says it’s hard to predict, but there’s surely millions of terminally ill patients who could benefit from psilocybin therapy. In 2021 alone, an estimated 1.9 million Americans will be diagnosed with cancer, according to the National Cancer Institute. That doesn’t even take into account, says Aggarwal, all the other terminally ill patients, such as those with Lou Gehrig’s disease, whom he also works with.

Susan Patz, a 62-year-old woman with Lou Gehrig’s disease, filed an Amicus brief, a statement which can be filed to the court by someone in favor of a particular side of a case, for this lawsuit. Patz lives in the town of Monroe, Washington, where her husband John is now her caretaker as she slowly loses agency over her body and even her ability to breathe and swallow. 

“Because of the ALS, I have had to give up a lot of the activities I was passionate about,” she wrote to the court in a brief filed on May 24th. “I loved gardening, and I used to delight in driving the tractor around our property. I loved to swim at the YMCA five days a week. I loved cooking and trying new recipes. I can no longer do any of those things.” She often stays up until 3 or 4 in the morning, because she can’t sleep; she used to be “foodie,” but now doesn’t want to eat or even see friends for fear that they’ll see her as a “sick person.”

“I am desperate to try something that will work, something that will enable me to experience joy and pleasure again,” she wrote to the court. “If the Right-to-Try laws don’t allow someone like me the chance to try something that may help alleviate my suffering, then what good are they?”

On June 21st, the Department of Justice will file a brief on behalf of the Drug Enforcement Administration. On July 12, the petitioners — Aggarwal and his patients — will be given the opportunity to reply. And then, likely in September, the oral argument will take place in which, Tucker says, they may get their first insights into where the court stands on the case. She’s hopeful that perhaps they won’t even get that far, though, because the Drug Enforcement Administration will reach out with the intention of finding a resolution.

Either way, Tucker says, if the case passes, the next doctor and patient who want access to psilocybin for end-of-life distress shouldn’t need to take it to court again. If they succeed in Washington, then, she says, doctors and patients in states with Right to Try laws should be able to access psilocybin.

There’s many unknowns, however, about how doctors and patients would go about notifying the DEA when they’re going to conduct psilocybin therapy — and how they would access the psilocybin itself. Currently, under Right to Try laws, doctors don’t need government approval at all — they can go straight to manufacturers to request access to a drug that’s under investigation for their patient. But the process might be different for psilocybin and a host of practical issues exist, too, such as that it’s difficult to find federally-licensed labs making synthetic psilocybin as there’s no publicly available directory. At this point, Tucker says, they’re just focused on taking things in “small bites.”

“It kind of kills me that I have to be dying to even possibly have access to this medicine when I think it could be incredibly helpful for so many people that maybe don’t fall into that category,” says Baldeschwiler. “I truly, truly am hoping that we have some open minds and open hearts with regards to the DEA and that they honor the intent and the letter of the law because we fall within it.”

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Rethinking quality care

— A long-term care psychologist’s perspective

By Eleanor Feldman Barbera, Ph.D.

Quality care is often considered from a medical perspective, with the focus on providing the best possible medical services. This is, of course, an essential element of the services provided in long-term care.

But at a time when there’s a greater push for community care over nursing and rehabilitation centers, it’s worth rethinking what quality means to the residents themselves. After 20-plus years of talking to them, some general themes are clear.

Which features are most important to a particular resident depends to a significant degree on which of the four categories they fall into: short-term rehab (STR), long-term care (LTC), end of life (EOL), or relatively young with concurrent substance abuse and/or mental health problems (SAMI). While the categories aren’t mutually exclusive, I find them a helpful framework in considering resident needs.

Moreover, while most nursing homes have residents from each category, some facilities have a larger proportion of one population over another. For example, tallying data from LTCFocus.org shows that in 2019 the average U.S. facility had almost 12% of its population with a diagnosis of schizophrenia or bipolar disorder, but some facilities had none and some had over 95% of their residents with these diagnoses. 

Facilities should therefore consider their population makeup to better address their particular mix of residents. 

All residents

All residents in each category require their basic needs met. As we learned in grade school, this means food, clothing and shelter. In a nursing home setting, we can include assistance with activities of daily living (ADLs). 

Facilities consistently provide food and shelter, but if residents don’t have clothing, they wear hand-me-downs or medical gowns. This is a frequent source of distress for residents, who find it humiliating and depersonalizing. 

Meager personal needs allowances (PNA) without inflation adjustments cannot cover clothing costs. In New York State, for instance, the PNA has been $50 per month since 1980. An inflation-adjusted amount would be a more reasonable $159.60 per month, which would allow for a haircut (not a covered necessity!), cell phone service and a new shirt.

Quality care would offer residents a better means to access their funds so that they’re not dependent on family or staff, especially since an increasing number of residents have no community contacts. I like the idea of a debit card linked to their facility accounts so that they can order items online, thereby increasing their independence and reducing demands on staff.

We also fall short on providing an adequate level of assistance with ADLs. The single most distressing aspect of care for virtually all residents is not being toileted in a timely fashion. If we addressed this, the perception of quality care would increase dramatically and we’d prevent a host of additional and costly problems such as falls and skin breakdown, as I outlined in If toileting were a billable service….

Short-term residents

Residents who are admitted for short-term rehab following brief illnesses, knee replacement surgeries, etc. require the usual focus on their physical health, including medical care and rehabilitation.

Other primary concerns for these residents include pain management, adjusting to physical impairment and practical issues such as paying bills so that they have a home upon discharge.

Quality care would suggest swift access to pain management specialists and universal referral for psychological evaluations (rather than on a case-by-case basis), as well as a better means to assist people with managing problems at home. 

STR residents frequently require medical follow-up from outside professionals, necessitating coordination between providers. If the field had “transition specialists,” to track and meet resident needs from hospital to clinic to nursing facility to home, this would vastly improve care. Transition specialists could also take on tasks such as picking up mail and clothing to ease the foreseeable difficulties of STR residents.

Long-term residents

LTC residents tend to be more stable medically and to have completed the process of impoverishment (a very troubling issue for them) so that they’re no longer worried about bills and finances. Their focus is generally on remaining connected to family members, engaging in absorbing recreational pursuits and maintaining their physical abilities. 

Facilitation of family communication, connection with other residents in meaningful activities and ongoing exercise by dedicated staff leads to quality care to this group.

End of life care

For a variety of reasons, very ill residents frequently receive medical interventions that are painful, stressful, expensive and unlikely to improve their conditions. Hospice and palliative care are often initiated too late for residents to gain the most benefit. 

Quality care for these residents would involve deeper conversations about end of life wishes for residents and their family members, a greater team emphasis on providing a “good” death based on their wishes and earlier involvement of the hospice and/or palliative care team. 

Younger, mentally ill and substance-abusing residents

It’s a societal failure that relatively young individuals with mental illness, many of whom have lacked adequate social supports and have attempted to self-medicate with drugs and alcohol, would find themselves living in a nursing home following a physical health crisis. 

It would be more fitting for the country to develop care homes where people with concurrent physical and mental health problems can be treated for both, in an environment with more independence and suitable activities and peers.

Nevertheless, our facilities are increasingly filled with such residents, who have almost doubled in number since 2000. Providers looking for suggestions on how to manage this population will find ideas in my 2019 column, Severely mentally ill residents: A ‘perfect storm’ creates a SNF wave. 

Conclusion

As the provision of eldercare is reexamined in the aftermath of the pandemic, we have the opportunity to rework old assumptions and procedures. The framework outlined above is one way to consider the needs of a diverse population and to create long-term care that provides higher quality care for all residents.

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Does Medicare Cover Hospice?

The answer is yes, but you must qualify and use a Medicare-approved hospice provider.

By Kate Ashford

As you or a loved one nears the end of life due to a terminal illness, hospice care might be a consideration. Hospice is a type of care in which a team of specialized health care professionals make someone who is terminally ill as comfortable as possible during the time they have remaining.

Medicare does cover hospice, but you must meet specific requirements [1]:

  • The hospice provider must be Medicare-approved.
  • You must be certified terminally ill by a hospice doctor and your doctor (if you have one), meaning you’re expected to live six months or less.
  • The hospice care must be for comfort care, not because you’re trying to cure your condition.
  • You must sign a statement opting for hospice care over other Medicare benefits to treat your illness. (See an example of this statement here [2].) If you’re thinking about seeking treatment to cure your illness, talk to your doctor — you can stop hospice care at any point.

Hospice care through Medicare generally takes place in your home or a facility where you live, such as a nursing home.

What hospice care is covered?

Hospice care providers care for the “whole person,” meaning they help address physical, emotional, social and spiritual needs [3].

  • All items and services needed for pain relief and symptom management.
  • Medical, nursing and social services.
  • Drugs to manage pain.
  • Durable medical equipment for pain relief and managing symptoms.
  • Aide and homemaker services.
  • Other covered services needed to manage pain and additional symptoms, and spiritual and grief counseling for you and family members.

In addition to you and your family members, your hospice care team may include some or all of the following:

You’ll also have the option of a hospice nurse and doctor who are on-call 24/7, for the sole purpose of giving your family support.

What will it cost?

Under Original Medicare, there are no costs for hospice care, although you’ll still pay any Medicare Part A and Medicare Part B premiums.

You’ll pay a copayment of up to $5 for each prescription for outpatient drugs to manage pain and symptoms. You may also pay 5% of the Medicare-approved amount for inpatient respite care — this is care you get in a Medicare-approved facility so your day-to-day caregiver can rest.

What isn’t covered?

Once your hospice benefit has begun, Medicare will not cover any of the following:

  • Curative treatment: Any treatment meant to cure your terminal illness or any related conditions.
  • Curative drugs: Prescription drugs meant to cure your condition.
  • Care from a hospice provider that wasn’t arranged by your hospice medical team. Once you have a hospice provider, you must get care arranged by them. You can still see your primary doctor or nurse practitioner if you’ve picked them to be the attending medical professional that helps manage your care.
  • Room and board: If you’re at home or you live in a nursing home or hospice inpatient facility, Medicare will not cover room and board. If your hospice team decides you need a short inpatient or respite care stay, Medicare will cover the costs, although you may owe a small copayment.
  • Care received as a hospital outpatient (such as in an ER), as a hospital inpatient or ambulance transport. However, Medicare will cover these services if they’re arranged by your hospice team or they’re not related to your terminal illness.

Starting hospice care

If you have Medicare Advantage, your plan can help you find a local hospice provider.

The hospice benefit is meant to allow you and your family to stay together at home unless you require care at an inpatient facility. If you need inpatient care at a hospital, the arrangements must be made by your hospice provider — otherwise you might be responsible for the costs of your hospital stay [4].

How long can you get hospice care?

If you’ve been in hospice for six months, you can continue to receive hospice care, provided the hospice medical director or hospice doctor reconfirms your terminal illness at a face-to-face meeting.

If you have other health issues that aren’t related to your terminal illness, Medicare will continue to pay for covered benefits, but generally, hospice focuses on comfort care.

Under your hospice benefit, you’re covered for hospice care for two 90-day benefit periods followed by an unlimited number of 60-day benefit periods. At the start of every benefit period after the first, you must be recertified as terminally ill.

What if you’re in a Medicare Advantage plan?

Once your hospice benefit begins, everything you need will be covered by Original Medicare, even if you decide to stay in your Medicare Advantage plan or another Medicare health plan. (You do have to continue paying the premiums.)

If you remain a member of a Medicare Advantage plan, you can use the plan’s network for services that aren’t related to your terminal illness, or you can use other Medicare providers. Your costs will depend on the plan and how you follow the plan’s rules.

Nerdy tip: If you start hospice care after Oct. 1, 2020, you can request a list of items, services and drugs from your hospice provider that they’ve classified as unrelated to your terminal illness and related conditions, including the reasons behind their inclusion on the list. (Find an example of this kind of statement here.)

Can you stop hospice care?

If your condition gets better or goes into remission, you may wish to end hospice care. You can stop hospice care at any point, but you must make it official: You’ll need to sign a form that states the date your care will stop.

Note that you should sign a form of this kind only if you are ending hospice — there are no forms with an end date when you start hospice care.

If you were in a Medicare Advantage plan, you’ll still be a member of that plan after you end hospice and are eligible for coverage from the plan. If you’re a member of Original Medicare, you can continue with Medicare after you end hospice care.

If you have additional questions about your Medicare coverage, visit Medicare.gov or call 1-800-MEDICARE (800-633-4227, TTY: 877-486-2048).

Works cited

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End-of-life care: people should have the option of general anaesthesia as they die

By and

Dying patients who are in pain are usually given an analgesic, such as morphine, to ease their final hours and days. And if an analgesic isn’t enough, they can be given a sedative – something to make them more relaxed and less distressed at the end of life. We have recently written about a third approach: using a general anaesthetic to ensure that the dying patient is completely unconscious. This has been described previously, but largely overlooked.

There are two situations when a general anaesthetic might be used in dying patients. The first is when other drugs have not worked and the patient is still distressed or in pain. The second is when a patient has only a short time to live and expresses a clear wish to be unconscious. Some dying patients just want to sleep.

But what type of anaesthesia are we talking about? If you need surgery or a medical procedure, there are three options. First, being fully awake, but having local anaesthesia to block the pain. Second, you could be partly sedated: you would be less stressed or worried about it, but you might remember some of the procedure afterwards. Finally, you could have a general anaesthetic and be out cold, with no memory of the procedure afterwards.

Any of these might be appropriate, depending on the procedure and depending on the person. But the option with the highest chance that you won’t feel anything is, of course, general anaesthesia.

These same three options could be offered to a dying patient. Some people might want to be as awake as possible. (Like the poet Dylan Thomas, they might not wish to “go gentle into that good night”.) Some might want to be sedated, if necessary. Others might want to be completely asleep.

The choice of general anaesthesia at the end of life is potentially popular. Last year, we surveyed more than 500 people in the UK about end-of-life options. Nearly 90% said they would like the option of a general anaesthetic if they were dying.

You might wonder, is this not just euthanasia by another name? Giving someone medicines to ensure that they are unconscious as they die naturally is different from giving someone medicine to end their life. General anaesthesia is legal, whereas in many countries, including the UK, euthanasia is illegal. This means that the option of anaesthesia could be available now for dying patients in the UK without changing the law. France has recently recognised the right for dying patients to be unconscious.

Wouldn’t it be too risky?

There are side-effects with all medicines, but recent advances mean that it is possible to give anaesthetic medicines to patients close to death without affecting their breathing. The medicine is given slowly, and the patient made unconscious gradually over 15 to 20 minutes. The medicine can be slowed or stopped at any point.

Tray of anaesthetic drugs.
Tray of anaesthetic drugs.

Previous studies that have used anaesthesia at the end of life, have continued the medicines for one to 14 days until the patient died naturally.

This will not be for everyone. It may not be possible for those who are dying in their own home. And some people will not want it. But we have the means to offer dying patients a gentle alternative end to their days. We believe that there is a strong ethical case to make the option of general anaesthesia at the end of life more widely available.

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