This Hospice Is Hoping To Prove That Cannabis Can Make Dying Less Painful



The nation’s first federally approved study to see if medical
marijuana can ease pain for those with terminal illnesses is
under way. Advocates hope it will make patients less reliant on
opioids.

Posted on August 22, 2017, 19:33 GMT

Ernestine Coon reclined in her hospital bed at The
Connecticut Hospice with a colorful blanket covering her
legs, watching seagulls soar over the water from her
second-floor room. Longtime friends chatted with Coon as the
slender, silver-haired grandmother prepared to do something
she’d never done in her 70 years: Try marijuana.

One year ago, Coon visited the doctor and left with a
diagnosis of ovarian and uterine cancer. Now, with doctors
giving her about six months to live, she has constant pain in
her abdomen and back, and has signed on as patient number
five in the nation’s first federally approved trial to see if
medical cannabis can sufficiently reduce pain in dying
patients so that they can reduce their use of opioids. The
study, which was announced in December and began in May,
could change how millions of dying Americans treat severe
pain, and open the door to alternatives to prescription
painkillers blamed for a nationwide epidemic of addiction and
overdose deaths. It’s expected to run for at least a year,
and the goal is to enroll 66 on-site patients who are well
enough to swallow capsules filled with cannabis extract, but
whose pain is so bad that they require prescription
medication to manage it — patients like Coon, one of the 1.3
million US hospice patients facing certain death and hoping
to make it as pain-free as possible.

“You’re talking to someone who never did drugs,” Coon said,
her voice scratchy. “It wasn’t my thing.”

Christopher Capozziello for BuzzFeed News

That has changed as her disease has progressed and her pain
has worsened. Coon — an energetic woman who brags that she
rarely was ill and was never hospitalized except when she
gave birth — now has trouble walking, sitting up straight, or
playing with her grandchildren. “Since I was diagnosed with
this, I’ve probably taken medicines that in my wildest dreams
I never even thought I would be taking,” Coon said, craning
her neck to see her two friends, Fran and Ann, who were
sitting nearby. Ann held Coon’s hand. Fran grabbed a photo
from the windowsill that showed Coon at her happiest,
healthiest self — grinning in the midst of a pile of
grandkids.

“In fact, I’m going to give myself a dose,” Coon said as she
pressed a button that looked like a buzzer. It pushed a small
dose of Dilaudid, a powerful opiate, into her body through a
pump.

Christopher Capozziello for BuzzFeed News

A bouquet of flowers stands on the windowsill of Coon’s
room, which overlooks the Long Island Sound.

A “tree of life” is etched on the glass at the
entrance to The Connecticut Hospice, which sits on the shore
of Long Island Sound and serves 3,000 people each year. The
nation’s first hospice, founded in 1974, treats pain in a
variety of ways, from a visit with Lizzie, an eager golden
retriever therapy dog, to some of the strongest painkillers
available. But the drugs’ side effects — drowsiness,
confusion, and nausea, among others — add to the agony of
gravely ill patients and their relatives, who want their
loved ones to be alert in their final days.

The cannabis study was designed in part by Wen-Jen Hwu, a
Yale School of Medicine graduate and former fellow at the
hospice, who watched families endure the misery that often
accompanies conventional drug care, and who concluded that,
sometimes, it’s more humane to address the symptoms rather
than continue treating the disease.

“The tradition is narcotics, and more and more narcotics.
But, that makes patients more lethargic, more confused, and
have nausea, vomiting, and poor appetite and depression,”
said Hwu, now an oncologist at MD Anderson Cancer Center in
Texas and a board member at The Connecticut Hospice. “I do
believe that the marijuana can definitely reduce the amount
of the opiates that we need for our patients. More
importantly, it can help them to feel better than they
actually are.”

“The tradition is narcotics, and more and more narcotics.”

Rosemary Hurzeler, CEO of The Connecticut Hospice, urged
staff to take on the trial. She anticipates that the ripple
effect could be “enormous.” “I think there’s going to be a
big chance for other hospices to take a swing at this in
their own state,” Hurzeler said. “But, it has to be
standardized and that’s what the feds are doing in giving us
this opportunity to demonstrate this.”

From start to finish, it took three years for Jim Prota, the
hospice’s pharmacy director, and his colleagues to bushwhack
through red tape to get the clinical trial off the ground.
The idea of using marijuana for medical reasons isn’t new —
the movement was born out of the AIDS crisis in the ‘90s, and
29 states and Washington, DC, now allow medical marijuana in
some capacity. But in the eyes of the federal government,
cannabis is an illegal drug, so the hospice had to gain
approval from the Food and Drug Administration. It also
needed the Drug Enforcement Administration to give its
permission for the hospice to distribute a Schedule 1 drug,
the category the federal government reserves for drugs it
considers to have a high potential for abuse and no medical
value.

“Maybe there is a drug beyond the opioids that can influence,
a little bit, their quality of life.”

Decades of research support marijuana’s efficacy in treating
pain. A RAND Corporation study found a link between legal cannabis
dispensaries and a reduction in opiate-related deaths, which
reached 33,000 in 2015. Sen. Elizabeth Warren has
asked the Centers for Disease Control and
Prevention to examine “the impact of the legalization of
medical and recreational marijuana on opioid overdose
deaths.” Nora Volkow, director of the National Institute on
Drug Abuse, coauthored an article in July that said there is “strong
evidence of the efficacy of cannabinoids” in pain treatment.
The article said that medical cannabis could “provide a
powerful new tool” in the fight against opiates.

Hurzeler agrees and hopes that the hospice staff’s research
leads to broader use of marijuana as a “beautiful new drug”
that lessens anguish for people suffering terminal illnesses.

“Maybe there is a drug beyond the opioids that can influence,
a little bit, their quality of life,” she said. “And we
always say that we want to add days to life and life to
days.”

Christopher Capozziello for BuzzFeed News

Left: A St. Simon Stock prayer card hangs in Coon’s room.
Right: one of Coon’s medical cannabis capsules.

Hospice care providers across the country have said
the same thing: Patients are talking about pot even in states
— like Kentucky — that have highly restrictive medical
cannabis laws. Brian Jones, director of Hospice and
Palliative Care Programs at St. Elizabeth Healthcare in
Edgewood, Kentucky, said more and more patients want to know
if cannabis is available and legal, and how much might be
enough to help with their symptoms.

Jones has noted an increased interest in cannabis and
palliative care in the years since he gave a talk in 2014 on
medical cannabis to a national group of hospice providers at
the National Hospice and Palliative Care Organization. He’s
hopeful about The Connecticut Hospice study. “If it’s shown
to be effective in Connecticut and perhaps some other studies
as well, you’ll see a greater interest. There’s no doubt,” he
said.

“I truly believe that the cannabis is our solution.”

But the law and science haven’t caught up with public opinion
about medical marijuana, and national hospice organizations
haven’t come around to the idea either. NHPCO, the country’s
largest organization representing hospice and palliative care
programs and professionals, hasn’t taken a position on the
use of medical cannabis, and “currently does not comment on
the issue,” said Jon Radulovic, vice president of
communications for the organization.

This is due in part to federal drug laws that make it nearly
impossible for hospices to advocate for pot as a pain
reliever. In 2011, a study in the Journal of Palliative Medicine
found that health care workers in hospices “are generally in
favor of legalization of marijuana and, if legalized, would
support its use in symptom management for their terminally
ill patients.” But hospices risk losing federal
reimbursements and other funding if staff provide marijuana
to patients as long as the government classifies it a
Schedule 1 drug.

Connecticut State Medical Society

Sen. Richard Blumenthal (right) at the news conference
announcing the research trial with CT State Medical
Society chair David Emmel, MD (left) and the head of the
research trial Ted Zanker, MD (center).

The feds’ rules limit research on medical marijuana, which
Hwu says makes some doctors uncomfortable with it, further
hampering attempts to make it part of accepted palliative
care. The Connecticut trial could help remove that stigma,
she said.

“I truly believe that the cannabis is our solution. But I
can’t say that to you, and convince anybody, until we have
the clear evidence to show the facts, to tell people that it
improves their quality of life in the end stage of their
disease,” Hwu said.

With medical cannabis legal in Connecticut, the clinical
trial has strong support from state elected officials. Gov.
Dannel Malloy and Sen. Richard Blumenthal attended the news
conference at which the trial was announced last December.

“There is a need for pain management, but there are better
alternatives. And that’s why the research to be done here is
so critically important. It is really groundbreaking. It can
help save lives,” Blumenthal said, offering a challenge to
any federal attempts to quash the medical marijuana movement.
“And if any attorney general thinks he is going to turn back
the clock, or roll back the progress we have made, he is in
for a fight,” he said to loud applause.

Christopher Capozziello for BuzzFeed News

A small framed photograph of Coon with her four
grandchildren sits on her windowsill.

Whole-plant marijuana and its products are already
used during palliative care outside of the traditional
hospice and hospital settings. Santa Cruz, California, is
home to the Wo/Men’s Alliance for Medical Marijuana, a
cannabis collective that has been compared to a traditional hospice.
Director Valerie Corral helped pass the country’s first
medical cannabis law in part to help people die more
peacefully.

WAMM members grow marijuana for themselves and one another to
treat symptoms related to a variety of serious and terminal
illnesses. Since a local ordinance approved the use of
marijuana for medicinal purposes in 1993, WAMM volunteers
have helped more than 500 people die using whole-plant
marijuana. That’s a different form than the capsules being
used in the Connecticut study, but the goal is the same: to
make people more comfortable in their final days. Pot cannot
replace drugs like morphine, said Corral, herself a medical
cannabis patient, but it can help to distract a dying patient
from the pain.

“Pain can trap one in the body. It can make it nearly
impossible to get away from that deep suffering. So, cannabis
can be helpful to amplify the usefulness of opiates,” she
said.

Corral recalls one of the first members of WAMM, a man with
cancer in his mid-forties who was hours from death in the
early ’90s and in a coma-like state. She shotgunned a joint,
meaning she lit it and blew cannabis smoke into his nostrils
as he inhaled. Corral recalled that, after the third time he
breathed in marijuana, the man smiled, gave a thumbs up,
opened his eyes, and talked to his family — before he died an
hour later.

One challenge facing The Connecticut Hospice trial is that
some patients still see marijuana as a street drug, unlike
traditional therapies. And even though most of them are
suffering from advanced cancer, end-stage Lou Gehrig’s
disease, and other painful illnesses, if they or their
families have struggled with past drug or alcohol abuse,
they’re hesitant to join because of concerns about relapse.
“I’ve had problems with alcohol in the past. I guess once an
alcoholic, always an alcoholic,” said Rick Wright, a thin
61-year-old who sat in a wheelchair puffing on a cigarette.
Wright suffers from bowel and liver cancer and would have
been a good candidate for the trial, which has so far
enrolled patients aged 59 to 70, but he chose not to
participate.

“I think maybe if I had seen a lot of other patients using
it, I might have,” he said as a harpist plucked away nearby
and other patients sat in their wheelchairs outside, taking
in the ocean breeze.

Coon’s daughter, Tanya, helped her mother make the decision
to take part in the study. She knew more about the possible
benefits of medical marijuana than her mother, and discussed
the trial with Prota. “I think the impression was that it
would make her high,” Prota said of his conversations with
Coon. “She didn’t know how she would feel since she never
used it recreationally.”

“And toward the end of my life, maybe I can go out with my
grandkids to the park and watch them run around.”

In fact, the medical cannabis pills don’t get people stoned.
The clear capsules given to patients contain a dark, tar-like
cannabis extract high in cannabidiol (CBD), known for its
medicinal benefits. They are low in tetrahydrocannabinol, or
THC, the ingredient in marijuana that gets people high.

Coon’s decision to participate had as much to do with
managing her pain as trying to enjoy life as much as
possible, given how little time she has left. Three times a
day, she swallows a dose under the watchful eye of medical
staff, who monitor her vital statistics and quiz her on her
pain. Coon is still also taking opiates, and it’s too early
to tell if the cannabis will enable her to taper her Dilaudid
doses.

But Coon feels more in control of her treatment now that
she’s working with the doctors on a scientific study. And
she’s more hopeful than before — thinking that maybe in
addition to relieving pain, medical marijuana will prove to
have curative effects.

“I know my life expectancy, what they say, is not good. But
if I could postpone it a month, a day, 10 months, three
months, it will all be worth it if they can manage my pain,”
Coon said. “And toward the end of my life, maybe I can go out
with my grandkids to the park and watch them run around.” ●

Alyson Martin is a national reporter for BuzzFeed News and
is based in New York.

Contact Alyson Martin at alyson.martin@buzzfeed.com.


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