— We must better manage the suffering of patients with a history of substance use disorder
By Ramandeep Kaur, MD
I still recall the look on my patient’s face and her words 2 years later.
“I am done with this life,” she told me. “Don’t let me die in pain,” she added as she folded her hands to physically plead with me.
I simply cannot convey in words how painful it was to witness the agony of this patient.
Here is what happened: My hospital requested a consultation for cancer pain management involving a relatively young patient with metastatic pancreatic cancer. Making matters worse, she was admitted with a severe apparent infection and displayed signs of failure to thrive with anorexia/cachexia. And then there was the pain, which doctors called intractable.
Typically, such pain cannot be cured and is merely managed at best.
My partner physician on the case treated the young patient for several days. There was a documented recommendation of “NO IV OPIOIDS,” citing past medical history of use of injected heroin.
One day, as I entered the patient’s room, I saw that she was fragile, moaning loudly in pain. She was visibly distressed, holding her belly. “I need some pain medicine,” she said immediately.
As I introduced myself and inquired about her pain, she held my hand and said, “Listen, Doc, I have lived in pain my entire life. I beg you, do not let me die in pain.”
Pain is the most prevalent and debilitating symptom in advanced cancer and at the end of life. Opioids are the mainstay treatment for cancer pain treatment. It is challenging when patients with a history of substance use disorder with opioid-type medication get diagnosed with cancer.
Since the start of the opioid epidemic, there has been a more significant push by federal agencies like FDA and CDC to decrease opioid prescriptions with no backup options in treating patients’ pain and mental health illnesses like substance use disorder. Abrupt brakes were applied to prescription opioids, forcing patients to resort even more to illegal means of obtaining pain medications on the street.
As expected, physicians and other clinic providers often fear prescribing opioids. This is even more of a reality when patients with a history of substance use are in their last days of life and dying from another disease like terminal cancer, and healthcare workers cite that they are not comfortable prescribing opioids in the current setting.
Substance use disorder is a mental health illness. As of 2015, approximately 10% of U.S. adults had drug use disorder at some point in their lives, and about 4% had met the criteria for drug use disorder in the past year. Additionally, 3.4% of Americans ages 12 and older misuse opioids at least once over a 12-month period. The COVID pandemic added oil on the burning flame of poor mental health.
Given the high prevalence of various types of cancer, many of these patients with a history of substance use disorder may get diagnosed with cancer at some point in their lives. But their mental illness will leave them unqualified to receive pain medications like morphine or buprenorphine to treat severe pain.
Do they deserve to die in pain because they suffered from addiction to illegal substances? People with drug use and mental health issues need the same empathy, compassion, and treatment as any other person.
What Can Be Done?
A multi-disciplinary team approach ensuring close collaboration among palliative and addiction specialists, psychologists, and supportive oncology is the need of the hour. The teams can thoroughly support and evaluate the patient and determine whether prescribing opioids is the most appropriate option. This approach will also help ensure patients aren’t handed-off between various specialties without continuity, leaving them with a sense of abandonment and increasing mistrust between the patient and the medical field.
The palliative subspecialty group is ethically bound to take care of their patients in the last phase of life, relieve their suffering to the best of their ability, and assist with a peaceful transition to the end of life. In my opinion, the presence of inherent empathy and additional training would produce real gems of palliative physicians who can provide comprehensive care to all patients with life-limiting diseases.
We must work with patients on a treatment plan that the provider and patient are comfortable with and maximize the quality of life for the short time the patient has left. The fear of opioid addiction should not cause needless suffering or lead patients to die in pain.
The stigmatization of medically complex patients with mental illness at the hands of the providers is not only unacceptable but morally unethical and reflects discrimination in the medical field. The situation is indescribable when such a patient also suffers from a terminal illness.
Five years ago, Dr. Nicholas Gideonse spoke with an older man who had received a terminal cancer diagnosis and was hoping to use Oregon’s medical aid-in-dying law.
Oregon’s Death With Dignity Act, in effect since 1997, permits doctors, after a complex process of requests and waiting periods, to prescribe lethal medication for dying patients to self-ingest.
The nonprofit group End of Life Choices Oregon had referred the man to Dr. Gideonse, a primary care doctor at Oregon Health & Science University and a hospice medical director, who had already helped many patients use the law.
But this time he could not. “I’m really sorry,” he told the man on the phone. “I’m not going to be able to help you with this.” Oregon’s law — and all the laws that permit medical aid in dying in 10 states and in Washington, D.C. — has residency requirements. This man would have qualified — except for that fact he lived in nearby Washington State.
The patient’s response, Dr. Gideonse recalled, was “stunned silence, deep disappointment.” A number of Dr. Gideonse’s primary care patients drive 20 to 30 minutes across the Washington border to his office in Portland. There, he can offer them any medical service he is qualified to provide — except that one — without proof of residency. And although Washington has its own aid-in-dying law, its southwestern region has few providers who can help patients use it.
Last month Dr. Gideonse, backed by pro bono lawyers and Compassion & Choices, an advocacy group for expanding end-of-life options, filed a federal lawsuit claiming that the residency requirement for Oregon’s aid-in-dying law is unconstitutional. “I realized how important this could be for patients seeking access,” he said.
The lawsuit is one of several legal and legislative efforts around the country to reduce the requirements that patients must contend with in order to receive aid in dying. In some states, lawmakers have already broadened the types of health care providers that can participate, or have shortened waiting periods or allowed waivers.
“I think of it as MAID 2.0,” said Thaddeus Pope, an end-of-life bioethicist at Mitchell Hamline School of Law who tracks such actions, referring to the acronym for medical aid in dying. “We found out there’s an access problem.” He added, “We set all these safeguards and eligibility requirements and they locked a lot of people out.”
Oregon led the shift in easing access, amending its law in 2019. The state previously required patients to make two verbal requests for life-ending medication, at least 15 days apart, to ensure that they had not changed their minds. Now, if the patient is unlikely to survive that long, their doctor can waive the 15-day waiting period.
“Fifteen days is everything when you are suffering,” said Kim Callinan, the president and chief executive of Compassion & Choices, which supported the change. “People who are eligible for the law are hitting roadblocks and barriers.”
In 2016, for example, Youssef Cohen, a political scientist at New York University, took the extraordinary step of moving across the country to use the Oregon law as he was dying of mesothelioma at 68. “He wanted the option to determine the end of his life,” said his wife, Lindsay Wright, who is an associate dean at the university.
To establish residency, the couple had to hurriedly sign an apartment lease, obtain an ID from the state motor vehicle agency, transfer medical records and arrange an immediate appointment with a Portland doctor to qualify for medical aid in dying. Dr. Cohen then faced the 15-day waiting period.
“He didn’t make it,” Dr. Wright said. “He died six days after we arrived. And he suffered.”
New Mexico, which in June became the most recent state to legalize medical aid in dying, has adopted a markedly less restrictive approach than other states. The largely rural state is the first to allow not only doctors but advanced practice registered nurses and physician assistants to help determine eligibility and write prescriptions for lethal medication. “In some communities, they’re the only providers,” said Representative Deborah Armstrong, a Democrat and the bill’s primary sponsor.
Although a doctor must also affirm that a patient is terminally ill, New Mexico patients can skip that step if they have already enrolled in hospice, as most do. The patient need only make one written request, rather than two or more requests, as other states require. A 48-hour waiting period between when the prescription is written and when it is filled can be waived. “People walk up and tell me how thankful they are to have this option if they need it,” Ms. Armstrong said.
California has simplified its 2016 law as well. In October, Gov. Gavin Newsom signed legislation that, starting in January, reduces the 15-day wait between verbal requests to 48 hours and eliminates the requirement for a third written “attestation.”
Similar bills died during the most recent legislative sessions in Hawaii, Washington and Vermont, but will be reintroduced, Ms. Callinan said. And in many states — including Delaware, Indiana, North Carolina, Virginia, Pennsylvania and Arizona — new aid-in-dying bills, if passed, will ease requirements for patients or expand the kinds of providers who may participate.
On the legal front, the Oregon lawsuit filed by Dr. Gideonse argues that residency requirements for aid in dying violate two sections of the U.S. Constitution, one barring state laws that limit the ability of a nonresident to access medical care and one prohibiting state laws that burden interstate commerce. The state must respond by Dec. 27.
“This is the only medical procedure we can think of that is limited by someone’s ZIP code,” said Kevin Diaz, the chief legal advocacy officer at Compassion & Choices.
A separate federal class action suit claims that California’s law, which like the others requires patients to self-administer the drugs that end their lives, discriminates against patients dying of neurodegenerative diseases that make it physically impossible to take medication without assistance.
The plaintiffs, charging violation of the Americans With Disabilities Act and California law, include patients with multiple sclerosis and A.L.S., also known as Lou Gehrig’s disease, and their doctors. (In denying a request for a preliminary injunction, a judge ruled in September that the plaintiffs were asking California “to cross the line to euthanasia.”)
Catholic organizations, anti-abortion advocates and some disability groups continue to oppose aid in dying. The California Catholic Conference, the church’s public policy organization, for example, argued in June that liberalizing the state’s law “puts patients at risk of abuse and the early and unwillful termination of life.”
Liberalizing the laws will likely increase participation, the bioethicist Dr. Pope predicts. “We know from evidence around the world that if you reduce the waiting period, or allow waivers in certain cases, it materially expands access,” he said.
Experts do not expect a major surge, however. Even in states where the practice has been legal for years, aid in dying accounts for very few deaths, a fraction of one percent. Of those who successfully navigate the process, moreover, about one-third do not use the drugs and instead die of their diseases.
Still, should Dr. Gideonse prevail in his lawsuit and a likely appeal, residency requirements in other regions might also start to fall. That could allow New York or Pennsylvania patients to use New Jersey’s aid-in-dying law, for instance, or Maryland and Virginia residents to seek providers in Washington, D.C.
It is an outcome that would please Dr. Gideonse. “This is an action in support of a needed and very important service,” he said. “I’m optimistic.”
William Husel, an Ohio doctor who was accused of killing 14 patients with what prosecutors described as “wildly excessive” doses of fentanyl between 2015 and 2018, was acquitted on all counts of murder Wednesday, concluding one of the most significant murder cases of its kind against a health-care professional.
Husel, a onetime physician of the year trained at the Cleveland Clinic, faced one count of murder for each of the 14 critically ill patients he was accused of killing. The jury deliberated for seven days before finding him not guilty on all 14 counts in what was one of the largest murder trials in Ohio history.
He had been charged with causing or hastening their deaths amid a period of lax oversight of fentanyl at Mount Carmel West, a Catholic hospital in Columbus. Husel would have faced life in prison with just one guilty verdict.
While the synthetic opioid is significantly more powerful than morphine and has wreaked havoc on American streets, it can provide pain relief in medical settings that is crucial to end-of-life care. The alleged victims in the Ohio case suffered critical medical conditions including overdoses, cancer, strokes and internal bleeding. Prosecutors acknowledged that all were being kept alive on ventilators and that many of them were dying.
“In truth, William Husel was an innocent man, and thank goodness the justice system prevailed,” Jose Baez, one of Husel’s defense attorneys, told reporters.
The 46-year-old’s acquittal came after a two-month trial that triggered a debate on end-of-life medical care. Husel and Baez argued in the trial that the doctor offered comfort care for dying patients and was not trying to kill them. They pointed out that the doctor’s actions did not occur in secret — nurses were the ones to administer the doses — and alleged that hospital officials made Husel the villain after realizing the systemic failures at play. The fallout over the allegations at Mount Carmel West had repercussions: the firing of 23 employees; the resignation of the hospital’s chief executive, chief clinical officer and chief pharmacy officer; and Medicare and Medicaid funding for the institution was put in jeopardy.
But Franklin County prosecutors alleged that Husel gave patients amounts of the opioid far beyond the norm. He ordered 1,000 micrograms of fentanyl for multiple patients — about 10 times the recommended dosage, according to prosecutors. One of the patients, 82-year-old Melissa Penix, was given 2,000 micrograms of fentanyl — 20 vials of it, all at once. The amount of fentanyl given to her, which was about 20 times the recommended dosage, depleted the entire supply of the medication available in the ICU that night, Franklin County Assistant Prosecutor David Zeyen told jurors.
Joel Zivot, an associate professor of anesthesiology and surgery at Emory University and the sole witness called by Husel’s defense, told The Washington Post that he was relieved the jury determined that disease, not fentanyl, caused the 14 deaths.
“Physicians intend to provide comfort at the end of a person’s life, and the idea that the intent was murder simply by the action by giving someone pain control was unprecedented and ultimately shown to be a false accusation,” Zivot said.
The Franklin County Prosecutor’s Office released a statement commending the prosecution and defense for their work, adding that the office accepted the jury’s finding Husel not guilty.
“The Jury after review of all the evidence was not convinced beyond a reasonable doubt that William Husel was guilty of any charges submitted to them,” the prosecutor’s office said in a statement. “We accept the jury verdict.”
The case came to light in the fall of 2018 when, Mount Carmel West has said, pharmacists voiced concerns about doses ordered by Husel, an anesthesiologist who had been employed at the hospital about five years and worked on the skeleton crew of overnight intensive care. He was well liked in the ICU and known for his willingness to teach those who worked alongside him.
In total, at least 35 people may have been given excessive doses, the hospital said after a review. All of them died; the hospital said five might have had a chance to improve. Officials alerted police, and Husel was charged in June 2019 with 25 counts of murder. Prosecutors dropped 11 of the charges.
During closing arguments in the trial this month, Zeyen argued that even if the patients were dying and Husel thought he was acting in their best interest, killing them still constitutes as a crime.
“That is what you do to sick animals. That’s fine in veterinary science,” Zeyen said. “That is not fine in the ICU at Mount Carmel.”
Baez responded by referring to Husel’s pledging to provide comfort to the patients, noting that the doctor had much to lose.
“Why would this man risk his family, his career, 17 years of trying to be a doctor, every single thing he has worked for, to hasten someone’s death or to kill them?” Baez asked during closing arguments.
Zivot told The Post that he reviewed each of the cases and concluded that Husel offered the kind of care that any doctor would have provided for end-of-life treatment.
“Dr. Husel did the thing that doctors do in that he provided some fentanyl for the purpose of mitigating what we imagine to be the pain of dying, and that’s it,” he said. “We cannot know what it feels like to die; we can only imagine it. We fear it, and we are concerned about that. If we can’t stop someone from dying, at least we can reduce the pain associated with dying.”
When Common Pleas Court Judge Michael Holbrook read each verdict of not guilty, Husel’s wife, Mariah Baird, watched and smiled before hugging her sister, reported the Columbus Dispatch. After all 14 counts came back as not guilty, Husel wiped away tears.
Even with his acquittal in the murder trial, Husel still faces more than 10 lawsuits from the families of patients. Several of the families have settled lawsuits worth about $13.5 million, according to NBC News.
Baez emphasized to reporters that he felt “terrible for all of the patients’ families suffering again.” But, he said, he hoped they took comfort knowing that a jury concluded that it was their loved ones’ critical illnesses, and not the opioid, that resulted in their deaths.
“Hopefully they take solace that their loved ones’ last moments were in peace and not as a result of a doctor being afraid to make them comfortable,” he said
Psychedelic medicines may represent a new frontier for end-of-life care, as well as psychiatric treatment. While these substances — including LSD, MDMA, psilocybin and ketamine, among others — remain illegal, grass roots support for decriminalization or medical use is growing. Meanwhile, venture capitalists and other investors are spending billions to get on the ground floor of what could become a new health care industry.
Much of the research and discussion on medical use of psychedelics has focused on care at the end of life. Interest in the potential medical benefits of these substances became widespread during the 1960s, but research all but stopped after they were criminalized through federal legislation in 1970. The first inklings of a resurgence began in the late 1990s, and momentum has picked up during the last decade.
“The evidence is just so compelling, and we have very little in terms of tools in our medical bag to be able to help people who are suffering from existential distress, anxiety and depression related to a serious illness diagnosis,” Shoshana Ungerleider, M.D., internist at Crossover Health in San Francisco, founder of the organization End Well, said. “We want people to be able to live fully until they die. If psychedelics given in a controlled therapeutic environment with trained clinicians who can help them do that, then these medicines should be more widely available.”
End Well recently produced a conference on the subject of psychedelic medicine for dying patients.
The body of scientific literature on psychedelics for dying patients continues to advance. Johns Hopkins Medicine in 2019 established a Center for Psychedelic and Consciousness Research backed by $17 million in grants.
Researchers have identified a number of clinical benefits, including reduction of anxiety, depression and improved acceptance of mortality, according to a 2019 literature review in the journal Current Oncology. The paper cited studies indicating that the most commonly used psychedelic drugs have no tissue toxicity, do not interfere with liver function, have few interactions with other medications and carry no long-term physical effects. Common side effects tend to be short in duration, such as nausea and vomiting or disruption of visual or spatial orientation.
Patients who use psychedelic medicines often report what researchers commonly describe as a “mystical experience,” involving a feeling of unity, sacredness, deeply-felt positive mood, transcendence of space and time, and other effects that study participants found difficult to verbalize, according to the Current Oncology paper.
“This can be transformative for people with anyone who is wracked with trauma, grief, loss or extreme states of suffering,” Sunil Aggarwal, M.D., co-founder, co-director and practitioner at the Advanced Integrative Medical Science (AIMS) Institute in Seattle, told Hospice News. “There’s also evidence that these substances can also reduce physical pain.”
Aggarwal is a board-certified hospice and palliative care physician and a past chair of the American Academy of Hospice and Palliative Medicine (AAHPM).
All psychedelics are illegal at the federal level and in most states. Oregon in 2020 became the first in the union to remove criminal penalties for all illegal drugs and is now in the process of establishing the nation’s first state-licensed psilocybin-assisted therapy system.
More action has been happening at the local level, with communities such as Washington, D.C., Denver, Ann Arbor, Mich., three Massachusetts cities, and Santa Cruz and Oakland in California voting to decriminalize some psychedelics and permit medical use. Some of these regions are now considering statewide decriminalization.
Connecticut and Texas each have laws on the books that created work groups to study the medical use of psilocybin, MDMA and ketamine. Legislatures in Hawaii, Iowa, Maine, Missouri, Vermont and New York state are currently mulling decriminalization or medical use bills.
In late July, Rep. Alexandria Ocasio-Cortez (D-N.Y.) reintroduced an amendment to remove federal barriers to research the therapeutic potential of psychedelic substances. The U.S. House of Representatives quickly shot down the legislation, though it garnered more support this round than the previous time it was introduced.
“We quite a few years off from having enough trained therapists and a policy pathway for which these can be made more widely available in a controlled therapeutic setting,” Ungerleider said. “There’s just so much interest right now among patients and among family members to learn more about this. All health care professionals need to have an understanding of where we’re at with psychedelics.”
Interest in psychedelics has transcended the research space and entered the business world. The familiar adage, “follow the money,” frequently provides good indicators of which way the wind is blowing.
The psychedelics industry is expected to bring in more than $6.85 billion by 2027, Forbes reported. Many of these investors are seeking to reproduce the lucrative results of the cannabis industry that emerged in the wake of legalization among a number of states. A recent report indicated that 36 states and four territories allow use of medical cannabis products, according to the National Conference of State Legislatures.
The largest investors in psychedelics include the venture capital firms Conscious Fund, Explorer Equity Group and Pala Santo. Earlier this year, Florida-based cannabis and psychedelics attorney Dustin Robinson co-founded Iter Investments, a new venture capital group focused on that sector.
A United Kingdom-based psychedelics-focused pharmaceutical company, Compass Pathways (NASDAQ: CMPS), went public in Sept. 2020 and is now worth an estimated $1.2 billion.
“There’s a unique opportunity to be able to go ahead and develop and commercialize [psychedelics] to a much larger patient population,” health care investor and venture capitalist Andrew Lee told Hospice News. “It’ll be interesting to see how natural pharmaceuticals might work. There’s the nonprofit, sacred path, the pharma path and the botanical drug sort of path. The most important thing is that this is another tool in the toolbox for treating a number of conditions.”
When Mark Peterson thinks about his mother, Rhea, he thinks of the petite woman who loved to play golf, and enjoyed sitting down with a good book.
But another thing that Peterson recalls about his mother is her courage at the time of her death.
Because of the suffering and pain his mother endured, Peterson has become a vocal proponent for medical aid in dying, a way for terminally ill patients to choose to end their lives on their own terms.
State lawmakers are currently debating a bill that would legalize medical aid in dying in Massachusetts. The bill includes a variety of protections, including that the person must have a prognosis of six months or less to live, and go through a 15-day waiting period.
The initiative is already legal in a handful of states, including neighboring Vermont and Maine.
There are strong opinions both for and against the issue. Those in favor say laws in other states have worked the way they were intended. However, opponents are concerned that this will further burden the healthcare system, already taxed by the pandemic.
But behind the intellectual arguments for and against the issue are real people, like Peterson, who’ve faced the decline of a loved one and formed their opinion based on that sad reality. These are some of their stories.
A mother’s difficult choice
Rhea Peterson, who was born in 1907, began smoking cigarettes as a teenager – doctors at the time encouraged her to, she said.
Throughout her life, Rhea had been hardworking. She became a copywriter, and she won awards, her son said. She raised four boys. She also wrote books for adults and children.
Rhea also beat breast cancer — she underwent a double mastectomy in the 1940s.
But at the end of her life, Rhea was robbed of the activities she loved.
At 75, she was diagnosed with chronic obstructive pulmonary disease, or COPD.
Rhea quit smoking, her son said, “but COPD had its way with her, and basically she was no longer able to golf, and she got progressively weaker; she had to have what’s called an oxygen concentrator,” Peterson said. Using the concentrator meant she had to wear a nasal tube.
Rhea’s health continued to decline. Her vision started to go, and she began forgetting her medication. She also started becoming incontinent.
She didn’t want to go into a nursing home, Peterson said.
“She couldn’t play golf, she couldn’t read as much, she couldn’t get out and get around, and she realized she was losing some of her memory,” her son said.
“In 1985, she said, ‘I want to die,’ and the brothers all kind of freaked out,” Peterson said. “We had no idea what to do with that.”
No state had medical aid in dying at the time — Oregon eventually became the first, in the mid-1990s — and end-of-life care hadn’t yet progressed to what it is today. The options for Rhea were limited, and in early 1986, she declared she was stopping all treatments. She had decided she would try to live into that year because she was told it would be better in terms of taxes on the inheritance.
The five days between when Rhea stopped her medications to when she passed were anything but peaceful. She struggled to breathe. There weren’t any painkillers.
“It was excruciating and gruesome,” Peterson recalled. Rhea was 78 when she passed.
For the past 11 years, Peterson, a retired psychologist, has dedicated his life to researching and teaching people about end-of-life options. He has also testified before the Legislature’s Joint Committee on Public Health regarding the state’s proposed medical aid in dying bill.
When faced with end-of-life options, loved ones often panic, and sometimes get confused about what their family member would want, Peterson said.
“The decision-making can sometimes end up being distorted and cause great pain,” Peterson said. “Probably the biggest single example of that is when a child says, ‘I’ll do anything to save mom,’ and at times mom is subjected to very intrusive, aggressive efforts to save her life.”
End-of-life care and medical aid in dying
Thinking about today’s end-of-life care compared to what existed during the mid-1980s, Peterson agreed that it has improved, but sometimes palliative care needs to be about more than just treating pain.
“It’s not just the pain, it’s the sense of isolation and aloneness and so on, which really can’t be assuaged by hospice,” Peterson said. “People who get to the point where they’re sick of being sick and the indignities of not being able to wipe themselves, and endless pills, there’s so many ways that people get to the point and … they say, ‘I’m done.’”
Long before she passed away, Susan Lichwala’s mother made her promise that if she was ever in a state where she could no longer take care of herself and was being kept alive artificially, that Susan would request her mother be taken off life support.
Yet, in 2016, her mother, Lynne, was diagnosed with lung cancer — she had smoked throughout her life, Lichwala said. She started chemo, but with atrial fibrillation, or AFib, her heart wasn’t strong enough to tolerate it. She received radiation therapy, but it wasn’t enough to stop the cancer’s progress.
Toward the end of her life, Lichwala said she was clinging to being alive, but was no longer living. She died after a couple of weeks. Lynne’s care through hospice was excellent, Lichwala said, but being alive in that condition isn’t what she would’ve wanted.
“I know my mother would never have wanted to have been like that, yet there was nothing we could do about it,” Lichwala said, since the law didn’t allow for medical aid in dying. This despite the fact that, “There was absolutely no chance [that] my mother was going to live.”
Thoughts on the current bill before state lawmakers
Peterson noted that medical aid in dying shouldn’t be called suicide, saying that it’s a “very loaded negative term that’s used by people who oppose someone having the opportunity to end their life the way they would.” There’s also the stigma attached.
He does say, though, that the current bill covers things like preventing those who are depressed or suicidal from ending their lives.
Since both his parents have passed, Peterson said he’s dreamed about his dad, who died of a stroke when he wasn’t present; he wasn’t able to say anything to him before his passing.
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
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.”
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.
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.
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.
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.
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.
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.