What a neurologist learned when his brother-in-law fell into a coma
In neurology, there’s a “middle ground” between life and death that providers and patients’ family members alike struggle to navigate—but a new subspecialty could help improve communication around patients’ care, Joseph Stern, a neurologist who’s found himself on both the provider and family side of these difficult brain injuries, writes for the New York Times‘ “Well.”
A family member’s aneurysm leads to difficult decisions
Two years ago, Stern’s brother-in-law, Pat, collapsed with a brain hemorrhage from a ruptured cerebral aneurysm and was taken to UCLA Medical Center. Stern, as Pat’s legally designated health care power of attorney, gave permission for Pat to undergo a “surgical clipping of his ruptured aneurysm” and flew to California to oversee the rest of Pat’s care and communicate those care decisions with Pat’s family.
“Technically, surgery went well,” Stern writes. “But Pat never regained consciousness.” While Pat wasn’t brain-dead, “he remained deeply comatose,” Stern writes.
This, Stern writes, left Pat in a complicated, but all too common, “middle ground” in medicine: he’d experienced a “neurologically devastating injury without brain death.”
In these cases, Stern writes, care-related “decisions can be more difficult” for both family members and providers to know when to stop life-sustaining care. While brain death “is stark and final,” Stern writes that patients with severe neurological injuries who are not brain dead can survive on life-sustaining supports though in many cases they may never wake again.
Stern and Pat’s neurosurgeon, Gregory Lekovic, decided to give Pat a week to improve, and if he didn’t, Lekovic advised the family not pursue more aggressive measures, such as a tracheostomy and G-tube placement. “Lekovic and I worried it would be difficult to back off after those procedures had occurred,” Stern writes.
Pat didn’t neurologically improve after a week, and it was likely that he “would never regain consciousness,” Stern writes.
Stern and Pat’s family had decided to stop treatment, but on the morning they planned to do so one of the neuro-ICU specialists gave them reason to pause. “[O]ne of the neuro-ICU specialists presented a scenario in which Pat might wake up, become able to walk with assistance, and participate with his family,” Stern writes. However, “When pressed, the doctor admitted he was giving us the best possible outcome, rather than the most likely outcome,” Stern writes.
Stern and the family consulted again with Pat’s neurosurgeon, Lekovic, who said if it were his loved one, he’d “make the decision to end treatment,” Stern writes. According to Stern, Lekovic “seemed genuinely sad” saying this.
The importance of empathy and connection
“Doctors often think it is most important to be precise and not make mistakes; to predict the future with medical certainty,” Stern writes. “In my experience, connection and empathy are far more important than certainty. Patients and families want to know that you care about them and that you appreciate their pain in difficult circumstances.”
To help guide families and caregivers through this complicated medical condition, Stern notes that a new field, called neuropalliative care, has emerged. In neuropalliative care, providers “focus ‘on outcomes important to patients and families’ … ‘to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body.'”
Health care providers shouldn’t “focus on the short-term or allow care to be driven by procedures, losing sight of outcome and quality of life,” Stern writes. “We need to approach our patients and their families with open hearts, acknowledging their suffering and the uncertainty we all experience.”
In the case of Pat, Stern explains that his family, particularly Pat’s sons, “appreciated the truth when I explained their father’s prognosis.” Of course, the sons were “devastated at the prospect of losing him,” Stern writes, but “honesty and inclusion in decision-making were important in helping them move forward with their lives”
‘We really need to talk more about death … it is an inevitable part of life, and yet we shroud it in euphemism, hushed secrecy, and denial. We often grieve alone with little sense of shared understanding as we sanitise our emotions and somehow carry on.’
That is how South Australian GP Dr Alison Edwards began a talk she gave to her local palliative care team. And it is why she set up a website, Doc Grief, dedicated to supporting doctors who have lost loved ones.
That is what she wished existed when she lost her ‘soulmate’ Mick to a sudden cardiac arrest 15 years ago.
Dr Edwards’ own path of grief has shown her that doctors often grieve differently – and that the professional distance necessary to deal with death at work simply does not cope with personal grief.
‘I felt the need to know others had walked a similar path and survived, and to maybe find some tips about how best to achieve this,’ she told newsGP.
‘I wanted to read a story that was a close match to mine, but found very little in print about doctors grieving. So some years later I felt drawn to create such a site for others.’
Writing on her site, Dr Edwards tells the story of her loss:
Mick was the local footy legend, the cheeky butcher with a sparkle in his eyes. After 38 years of thinking life for me was destined not to be one of a long-term couple, it was really nice to have someone to love and be loved by and even see myself growing old with.
Mick had spent the afternoon out with the kids and had had a couple of beers down the pub while I was in at work. He was in one of his favourite positions – lying on the lounge channel-surfing. And then Mick had a cardiac arrest and died. No warning. No clues. Just chatting with me one minute about the perfume the kids had given me for Christmas and next minute making funny breathing noises as if he didn’t like the perfume.
Mick died, and the world as I knew it crashed down around me.
Mick was just 37.
In the immediate aftermath, Dr Edwards’ small community – Port Broughton on SA’s Yorke Peninsula – reached out. That, she found, was supportive and challenging.
‘It meant having to share my grief with the town. There was no opportunity to return to work and not have everyone wanting to express condolences,’ she said. ‘I couldn’t turn around without finding more scones, lasagnes and soup.
‘People want to do something physical, which is beautiful, but you also can’t be anonymous. In an urban practice, you could sneak back and your patients would necessarily know. Here, everyone knew.’
Dr Edwards took several months off following Mick’s death. When she returned to work, she printed little cards for her patients to read ahead of consultations.
The cards stated that Dr Edwards was doing okay and asked patients to treat it as a normal professional consultation.
‘No one could stick to it. I gave up,’ she explained. ‘Patients felt rude not to express their condolences.
‘The first time you see everyone, they feel the need to go through it. It made things a little bit harder.’
Since she set up the site, many GPs have told Dr Edwards that it has been helpful. Some have written to her seeking support. Others have contributed their own stories of grieving.
‘Reaching out to those with lived experience can be very supportive,’ she said.
‘I’ve had people write saying thank you so much for setting this up. Just knowing that someone else had lived the experience while having a broader understanding of the health system [is helpful].
‘Doctors do get the idea that random stuff happens. In the community, there’s often the expectation that we can fix everything, but doctors understand that things are unpredictable.
‘People do randomly have cardiac arrests and die.’
Dr Edwards believes doctors grieve differently, due to their familiarity with death and learned ability to maintain professional distance.
‘Knowing death so intimately may falsely lead us to think we are acquainted with grief, but when it comes to losing a loved one all bets are off,’ she wrote in a KevinMD article.
Dr Edwards believes that the stereotypical doctor personality traits – high achievers able to hide their emotions and focused on control – can pose particular challenges, as grief and loss are entirely uncontrollable.
‘Doctors spend most of their time observing … [but] unless we have loved in a dispassionate, dissociated way, we do not give our grief a fair chance if we do not live it,’ she wrote.
Dr Edwards’ grief was ‘very raw’ for the first few years. Over time, it gradually changed.
‘I went from feeling it with every breath and as if it was sitting right in front of me, to a place of living with it rather than living for it,’ she told newsGP.
But she still misses the shared life that could have been, writing:
I still love him and what he gave me. And I miss the future we didn’t get to share … I think I have a more profound sense of living life to my fullest capacity and valuing what I do have.
I have coped by taking one day at a time, allowing time to soften the impact and create new memories.’
There are no shortcuts and no way of bypassing the process of healing after a broken heart.
There are no right ways of grieving. Whatever you find works for you is probably the best for you. This is unlikely to be booze, drugs or running away but you may need to try this for yourself for a while before you believe it. There is no standard timeline. You do not get over it, you do not move on as if it could be left behind. But you do learn to live with it rather than be consumed by it.
Increasingly, Dr Edwards finds people grieving in her long-time community are seeking her out.
‘It has changed how I practise,’ she said.’ ‘You’re taught not to bring too much of yourself into the consultation, to keep your distance, be professional, as it’s not about you.
‘In a little community, it’s almost impossible to do that. Patients want that sense of connection – especially when they already know your story and you can’t duck away from it.’
Dr Edwards will share parts of her grief with patients to help normalise their own experiences.
‘You almost need to do this in smaller communities, but it might not be appropriate in an urban setting,’ she said. ‘There is power in a shared understanding.
‘Often people want to talk because they know I have that lived experience. Not to acknowledge that would be counterproductive.
‘We’re humans, we like to know we’re not alone. We can be reassuring, to let patients they’re not going mad – that this is a normal response.
‘It can be powerful to hear that from someone who lived it.’
“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”
Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.
Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.
According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.
The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.
“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”
Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.
Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.
Usually, hospice care is offered in the home, or sometimes in a nursing home.
Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.
According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.
For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.
“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”
Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.
“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”
That’s exactly what happened with Teno’s mother.
“While it was difficult for me to witness, I knew what to do,” she says.
In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.
Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.
Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.
Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”
For many families, making hospice work at home means hiring extra help.
‘I guess I’ve just accepted what’s available’
At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.
“If you don’t, she will just spit them out,” Velez says.
Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.
John McCasland (right) of Goodlettsville, Tenn., hired a private caregiver to help with his wife, Jean (left) who suffered from dementia for eight years. Even when hospice took over, he still found he needed the extra help from Karrie Velez (center). Jean died in October after 13 months on home hospice.
When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.
“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.
But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.
Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.
Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.
Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”
Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.
That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.
The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?
“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.
Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.
“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”
Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.
I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.
This experience of family caregivers is typical, but often unexpected.
‘It’s a burden I lovingly did’
“It does take a toll” on families, says Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.
“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”
A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.
Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.
Coneigh Sea is a social worker from Murfreesboro, Tenn., who cared for her husband as he died on home hospice. Now, she wants to make sure her children don’t do the same for her.
Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.
“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”
She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.
“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”
Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.
As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.
“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.
“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”
In his 1996 book about death, Herbert Fingarette argued that fearing one’s own demise was irrational. When you die, he wrote, “there is nothing.” Why should we fear the absence of being when we won’t be there ourselves to suffer it?
Twenty years later, facing his own mortality, the philosopher realized that he’d been wrong. Death began to frighten him, and he couldn’t think himself out of it. Fingarette, who for 40 years taught philosophy at the University of California at Santa Barbara, had also written extensively on self-deception. Now, at 97, he wondered whether he’d been deceiving himself about the meaning of life and death.
“It haunts me, the idea of dying soon, whether there’s a good reason or not,” he says in Andrew Hasse’s short documentary Being 97. “I walk around often and ask myself, ‘What is the point of it all?’ There must be something I’m missing. I wish I knew.”
Hasse, Fingarette’s grandson, turned the camera on the philosopher in the last months of his life. The two were very close—when Hasse was a child, Fingarette would invent stories and record them on tape to send to his grandson, who lived 300 miles away, so that he could listen to them before bed. “My grandfather was one of the most thoughtful men I’ve ever met,” Hasse told me.
Being 97 is a poignant film that explores the interiority of senescence and the struggle of accepting the inevitable. Hasse quietly observes the things that have come to define his grandfather’s existence: the stillness of time, the loss of ability, and the need to come to terms with asking for help. “It’s very difficult for people who have not reached a state of old age to understand the psychology of it, what is going on in a person,” Fingarette says.
In one scene, Fingarette listens to a string quartet that was once meaningful to his late wife. He hasn’t heard the piece since her death seven years earlier—“her absence is a presence,” he says in the film—and becomes overwhelmed with grief.
Hasse made the artistic choice to omit his voice from the film, so while he was filming the scene, he had to stifle the urge to comfort his grandfather. “It’s very difficult to watch anyone in that kind of pain and not be able to console them, especially someone you love so dearly,” Hasse said. “I found myself sitting just a few feet away from him, unable to reach out because there was a camera between us. All I wanted to do was put a hand on his shoulder, embrace him, be with him in his pain.” After what felt to Hasse like an eternity, the filmmaker handed his grandfather a tissue to wipe away his tears. The scene ends just before this happens.
Fingarette died in late 2018. Just weeks earlier, Hasse had shown him the final cut of the documentary. “I think it helped give him perspective on what he was going through,” he said. “He loved talking about what a mysterious process it had been to film all these little moments of his life and then weave them together into a work that expressed something essential about him.”
The day before he died, Fingarette uttered his final words. After spending many hours in silence with his eyes closed, Hasse said, his grandfather suddenly looked up and said, “Well, that’s clear enough!” A few hours later he said, “Why don’t we see if we can go up and check it out?”
“Of course, these cryptic messages are up to interpretation,” Hasse said, “but I’d like to believe that he might have seen at least a glimpse of something beyond death.”
In the film, Fingarette admits that there “isn’t any good answer” to the “foolish question” of understanding mortality. “The answer might be … the silent answer.”
As Canada’s population ages, there is increasing demand on our health-care system. A simple blood test may help doctors predict who is at risk of imminent death, according to a study published Monday in the Canadian Medical Association Journal.
Dr. Stig Bojesen and colleagues from the University of Copenhagen studied 108,135 Danish people ages 20 to 100 years who were part of the Copenhagen General Population Study. During the study period, a total of 10,372 people died. The researchers combed through the health records of those who died in search of abnormal blood test results.
They found that the people who died during the study period had lower levels of a white blood cell called a lymphocyte. The researchers crunched the numbers. Compared with those with a normal lymphocyte count, those patients with a low lymphocyte count were 1.6 times more likely to die during the study period.
There are several possible ways in which a low lymphocyte count might be connected to an early demise.
One clue is that the current study found that a low lymphocyte count was associated with an increased risk of death from cancer, cardiovascular disease, respiratory disease, infections and other causes. These are chronic diseases that are common in older patients.
Researchers say they hope the blood test findings help doctors identify patients at risk of death within two years.
Lymphocytes are part of the immune system and the immune system is necessary to help patients fight off chronic diseases. The researchers speculated that a weak immune system might be one of the reasons why diseases like cancer and respiratory disease are more common the older we get.
Another theory is that a low lymphocyte count might indicate that the patient is frail. We know from other research that frailty can lead to illness and death.
Other tests to predict risk of imminent death
The lymphocyte count is not the only blood test that can help predict the risk of dying.
A number of studies have looked at another simple blood test called C reactive protein or CRP. Elevated levels of CRP are associated with increased risk of imminent death. A recent study found that patients in Japan who come to the emergency department with a heart attack and who have a high CRP level are more likely to die during the ensuing hospital stay.
A 2019 study in the journal Nature Communications identified 14 new biomarkers that can be measured in the bloodstream that could predict the risk of dying within five or 10 years. The study found these tests would likely be more accurate than the conventional risk factors (for example, smoking and heart disease) that doctors use currently.
The researchers say they hope the findings help doctors identify patients at risk of death within two years. Such patients might be followed more closely for signs of life-threatening illnesses and perhaps treated more aggressively. Patients could then be re-tested to see if the lymphocyte count, CRP and other blood tests returned to normal levels as the imminent risk of death is reduced.
Down the road, researchers say they would like to use those abnormal tests and biomarkers to design targeted treatments that might stave off death.
It’s worth keeping in mind that studies like this one confirm what doctors already know. Studies show that doctors are good at identifying patients whose imminent death would not surprise them.
I think patients and their families might be very surprised that their doctors believe them at imminent risk of dying. I believe doctors need to share that information with patients and families to encourage them to live healthier or at very least prepare them for what lies ahead.
End-of-life care is one of the less frequently discussed uses of medical cannabis. After all, most of us who turn to cannabis, want to continue living, right? And yet, thanks to the ability of cannabis to ameliorate the heavy symptom burden experienced by patients with minimal side effects, palliative care is perhaps the area of medicine that would most benefit from its clinical use.
Dying is a journey all of us will inevitably take, however how to ‘die well’ is something we tend not to consider. Dignity with dying is only possible, I believe, when there is a certain amount of consciousness and acceptance of the process. Something that a skinful of morphine doesn’t allow. But cannabis does, and I experienced this for the first time with a friend’s mother.
As Jose neared the end of her life after battling pancreatic cancer, morphine failed to control her pain, leaving her confused and unable to connect with loved ones. Thanks to an open-minded doctor who recommended cannabis oil, the last few weeks of her life became the gift her family longed for. The pain no longer troubled her, the anxiety lessened, sleep returned, as did her appetite. Not only that, Jose remained fully lucid until moments before she died.
This changed me forever and it’s why I’m sitting here today writing about cannabis.
Holistic medicine
Sadly, when my mother became terminally ill with advanced cancer, this option was not available in the UK. Sure, I had a few offers from my cannabis contacts. But for an 82-year-old Irish ex-nurse, trusting a funky tasting oil (that I couldn’t say for sure how much to take) over the pharmaceutical meds prescribed in precise dosages was never going to happen.
Instead, I found myself administering a list of medications that just kept growing and growing as the disease progressed. This included morphine for the pain (which incidentally my mum couldn’t tolerate), antiemetics for nausea, laxatives for the constipation caused by both the cancer and the pain medication, as well as Lorazepam for the middle-of-the-night agitation.
The frustration was overwhelming. I knew that instead of the sledgehammer approach to her symptom control, a far more holistic, person-centred alternative existed that could not only ease her pain, take the edge off her anxiety and agitation, stimulate her appetite and help with the nausea, but also allow her to be present for the time that remained.
What is Palliative Care?
According to the World Health Organization, palliative care is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
In other words, palliative care encompasses end-of-life care, but a patient receiving palliative care is not necessarily approaching death.
However, when a patient enters the end-of-life stage in a hospice setting, the emphasis on quality of life means rules often get bent in a bid to fulfil a dying patient’s wishes and beliefs. Dogs and family pets are welcome guests in a patient’s room, and a glass of wine is not unheard of, if that’s what the patient wants. So why not allow access to medical cannabis if that will help ease the suffering of a dying patient?
In some countries and states in the US, palliative and end-of-life care is considered a qualifying condition for the prescription of medical cannabis.
Using Cannabis in Palliative Care
Since 2007, the Israeli Ministry of Health has approved medical cannabis for palliative care in patients with cancer. This led to a prospective study analysing the safety and efficacy of cannabis in 2970 patients and the responses were overwhelmingly positive.
Ninety-six percent of patients who responded in the 6 month follow-up reported an improvement in their condition, 3.7% reported no change and 0.3% reported deterioration in their medical condition. Furthermore, while only 18.7% of patients described themselves as having good quality of life prior to cannabis treatment, 69.5% did six months later. Tellingly, just over a third of patients stopped using opioid pain medication.
While observational studies such as these suggest cannabis can improve symptoms commonly found in advanced cancer, as well as improving quality of life, in practice physicians often feel insufficiently informed to prescribe cannabis to their patients.
A 2018 survey found that of the 237 US oncologists interviewed, 80% conducted discussions with their patients about cannabis, while only 30% actually felt they had enough information.
However, an encouraging 67% viewed cannabis as a helpful additional way to manage pain, and 65% said that it was equally or more effective than the standard treatments for the rapid weight loss often found in advanced cancer. And yet, only 45% of them actually prescribed cannabis to their patients.
These discrepancies mean that even in countries where cannabis can legally be prescribed for palliative care, many physicians prefer to stick to the usual methods of symptom control.
“If we’re going to integrate cannabis products in medicine,” he told Project CBD, “palliative care is the best port of entry because of the fact that doctors have more time, and patients also have the time to deal with possible issues of the medication.”
However, in order for cannabis to fulfil its potential in palliative care, Dr. Cyr believes a shift in how physicians view symptom control is needed.
“What seems to be coming through with the research for symptom control,” says Cyr, “is that cannabis is mildly effective for pain, mildly effective for nausea, mildly effective for insomnia and anxiety. It doesn’t treat any one of these conditions dramatically better than the other medications that we have. So, many physicians are like ‘why would we take a medication that is mildly effective when I can take a much more incisive approach with specific symptoms.’ Instead of saying ‘Do you have a bit of pain, a bit of anxiety, a bit of insomnia, a lack of appetite and a bit of nausea? So why don’t we start with something that’s mildly effective for all that and then we’ll be able to work on more specific symptoms in the long run’.”
Cyr is also critical of fellow physicians’ tendencies to rely on clinical evidence while dismissing the validity of their patients’ positive experiences.
“Palliative care is a specific situation where we can actually put into question the core philosophy of medicine which is the evidence based paradigm. I think physicians need to stop obsessing over the evidence when their patients are dying and clearly telling them, ‘I’m really enjoying this, I’m getting huge benefits from this, I’m sleeping better, I’m eating better.’ But the physicians are nodding their heads and saying, ‘I hear you, but I can’t accept this because I’m still lacking evidence.’
“But I think there is enough data out there to convince physicians that it’s safe for palliative care patients, and it’s predictable.”
Psychoactivity in palliative care
Cyr urges doctors to find peace with the idea that cannabis is psychoactive, which he believes could actually help patients process the existential anxiety often experienced at the end of their lives.
“When you look at the studies of psychedelics in depression and existential anxiety in cancer patients, some of these results have been dramatic,” says Cyr. “Although cannabis isn’t a true psychedelic, there are some similar experiences that patients tell us about.
At smaller doses patients experience a psycholytic effect, a lowering of the defenses allowing people to explore other aspects of their psyche, and that’s when they start making connections between different aspects of their reality.”
THC’s ability to reduce activation of the default mode network, the area of the brain involved in cognitive processing and where our ego or sense of self is thought to reside, could also potentially bring a sense of peace to dying patients.
Cyr explains: “Existential anxiety is rooted in the loss of the self, but when you can dissolve the ego temporarily and you realize it’s not all about me, that can be liberating.”
For the last fifty years, activists have been campaigning for the right to use cannabis to treat their health conditions in order to be well. This must also be extended to using cannabis to maintain quality of life in life-threatening illnesses, and when this no longer becomes possible, to die well and with dignity.
What people don’t understand is the beauty and joy to be found at the end of life. When I tell people I work at a hospice, they often say “that must be so hard.” But my favourite thing is hearing people’s stories, their experiences, their successes, their failures – the things that life has taught them. I love helping them share these stories with their family members. It helps the family members keep their loved one alive in their memories after he or she dies.
I had a husband of a resident come in six months after she had died to say that he received a Christmas card from her, written to him while in hospice. He was tearful, but so incredibly grateful for this gift. He said the card helped keep her alive for one last Christmas.
Hospice workers encourage conversations about things that want to be said and heard. We create time for families to connect, laugh and cry together. Mostly, we help create a legacy of the resident that will remain with their family.
We have helped someone write letters to each of her children. We have sung favourite songs, played favourite games. We have celebrated birthdays, births, marriages, vow renewals. We have rolled people in their beds out onto the patio to sit in the sun. Often, this is their first time outside the four walls of a hospital or bedroom in months. How amazing it is to have such a thoughtfully designed building that can make this possible – feeling the warmth of the sun directly on their skin, hearing the birds chirping from the nearby feeder and breathing in the fresh air. I see how it provides the resident and their family with a sense of normalcy. This is where the best conversations happen. Families can forget, for a moment, about what is to come, and just enjoy the present.
Hospice is a place that collects nurses and personal support workers such as me. The emotionally challenging work we do weans out the people who think it’s just a job. You do not just show up for a shift, put in the time, and clock in and out. You are responsible for providing this human being, who has lived a whole life, with the care and dignity they deserve as they finish it. We help ensure that all loose ends are tied. Sometimes, these things are big, such as arranging a visit from a miniature pony that one of our residents used to show. Sometimes they are small, such as staff sitting at the bedside of a resident who doesn’t have any family, holding their hand, so they don’t die alone.
I have spent time working in hospitals, in long-term care and in the community as I searched for a place where the work that I did matched my beliefs of patient-centred care and individuality. After my first day at the hospice, I knew I had finally found my match. The loss of the residents we care for like family does not take a big piece of us with them but, rather, fills us with purpose and joy. The work we do gives us so much back that the word “rewarding” doesn’t even scrape the surface.
I began working at the hospice in May, 2017. As much as I love the work and what we accomplish, I could never have imagined needing it myself. Shortly after I started, my father was diagnosed with cancer. Soon we were faced with the decision I have seen so many other families struggle with: Do we settle for adequate care in the comfort of our home or do we move to the hospice where we will receive excellent care but in an unfamiliar location? The decision was easy for me, but not so much for my mom. She was afraid that moving him to hospice meant she was giving up her ability to care for her husband. But my mom was relieved to discover that she could still conduct much of the care, even in our facility. She did not have to sacrifice one for the other. With the 24/7 nursing and physician support, Dad – after eight months of suffering from his illness – finally had some peace.
During this time of comfort, he was able to give back to us something we will carry with us forever. He called us all in, on his last good day, told us all how much he loved us and reassured us that he never suffered. He was able to leave me with a recording, telling me what our relationship meant to him and that he would be with me through all of the big life events that he would now miss.
The hospice isn’t a place where people come to die. It is where they come to live – to live well for the little time they have left. It is a place of celebration, connection, comfort and support. It is a place of safety for the dying and the grieving. Experiencing such care with my father has only fuelled my passion to ensure that as many people as possible can have a similar experience.
