Several years ago, MapQuest directed me on a 10-hour drive to visit my father in a Florida hospital. Complications from diabetes, including blindness, kidney failure, congestive heart failure, and a below-the-knee amputation, had taken their toll. This time my father, 69, was hospitalized for an infection of unknown origin that physicians could not name, despite their many attempts to grow cultures.
I did not know it at the time, but my father was dying.
Once I arrived at the hospital from Durham, North Carolina, I could hear his screams from the nurses’ station. “Never mind. I hear him,” I told the nurse whom I had just asked the location of my father’s room. “I’ll follow the sounds.”
That any patient would be left in so much pain that his screams could be heard down the hall was unacceptable to me. That this patient was my father, a man I had always known as a big, strong former football player – the kind of man other men didn’t dare cross (but who was also loving and gentle) – was difficult for me to process. Yet, here I was, being guided to his hospital room by the sound of his cries. Despite being a trained philosopher with an interest in bioethics, I had not yet begun to think about the ways in which racialized health disparities manifest even at the end of life. My father’s excruciatingly painful process of dying was but one example.
Gaps while living, gaps while dying
It is well documented that African-Americans experience excess mortality, or deaths beyond the expected mortality rate. However, even if disparities in the mortality rate for African-Americans were rectified tomorrow, the fact remains that we will all eventually die. And how we die matters.
According to a 2013 Pew Research survey, 72 percent of American adults have given at least some thought to their end of life wishes, with 37 percent of American adults having given their end of life wishes a “great deal of thought.” Some of these wishes include decisions about pain management, maintaining quality of life, and whether to continue aggressive medical treatment for terminal illness.
Additionally, research shows that people tasked with making treatment decisions for loved ones who cannot express their own wishes sometimes experience distress about watching their loved one suffer. Even months or years later, they wonder whether they made the “right” decision.
Black patients generally receive worse pain management in primary care environments and emergency rooms. Even black children are not treated for their pain to the extent that white children are. Some attribute this to false beliefs about biological differences between black and white patients, including the belief that black people have “thicker skin” and, therefore, do not experience as much pain as whites. These false beliefs lead to inaccurate pain assessments by physicians evaluating black patients and an unwillingness to take the pain complaints of black patients as seriously.
This disparity in black patients’ pain management continues even as black patients are dying. Families often want to ensure that their loved ones are as comfortable as possible once patients reach the point where death is near. Racialized gaps in pain management lead to a denial of humane comfort care that contributes to unnecessary suffering for black patients and their loved ones.
Inadequate pain management is but one aspect of the lower quality of care that black patients report in general that affects when and how black patients die. In December 2015, 57 year-old Barbara Dawson was arrested and forcibly removed from Calhoun Liberty Hospital near Tallahassee, Florida, after she refused to leave without further treatment. Although she had been evaluated in the hospital, she was discharged despite her continued complaints of difficulty breathing. Hospital personnel apparently assumed she was faking her symptoms and called police to arrest her for being disruptive. Dawson collapsed before she could be placed in the police cruiser and was returned to the hospital where she died an hour later from an undetected blood clot in her lungs.
Dawson may or may not have been at the end of life when she arrived at the hospital. However, hospital staff allowed her condition to deteriorate by not taking her complaints seriously. She died only feet away from people who could have, at minimum, eased her process of dying. The hospital was later fined US$45,000, and Dawson’s estate settled a lawsuit against the hospital for $200,000 in 2017.
Dawson’s experience is a dramatic and appalling case. Nevertheless, one groundbreaking study revealed that physicians generally interact less – both verbally and nonverbally – with black patients who are dying than with white patients who are dying. At the end of their lives, black patients do not receive the same comfort care, including eye contact and touch, from physicians that white patients do.
The U.S. health care system can improve care for all patients at the end of life. However, this system still denies black patients the kinds of interventions that white patients often take for granted. This denial contributes to more painful, horrific deaths of black patients and compounds the grief of their loved ones.
In my father’s case, even as part of me still hoped for a miracle, the thing I wanted most in the world was for him to be as comfortable as possible. That this did not happen despite my best efforts still haunts me when I think about the end of my father’s life.
If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.
Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.
From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.
Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.
“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.
John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).
He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”
Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.
One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.
There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.
“It was a profound experience for me. I realized what a good death could be.”
My story begins eight years ago, when I was approached by my first client requesting that I supervise her in a therapeutic session with a psychedelic medicine.
She had debilitating depression and anxiety brought on by a breast cancer diagnosis. Although she had survived her cancer, she couldn’t shake her terrible emotional distress. She had tried therapists, pills and a residential program. Nothing had worked.
Then she came across stories in the media about research at UCLA using psilocybin (the active ingredient in magic mushrooms) with cancer patients suffering from what was called “end-of-life distress” and how this new treatment was showing really promising results.
She was desperate to try it for herself.
Well, as a licensed therapist and academic, could I help this woman? Reading the research literature, I learned that psychedelic research was becoming well-developed as a treatment for the psycho-spiritual depression and “existential anxiety” that often accompany the diagnosis of a life-threatening illness.
I also found myself in a bind: The science was telling me that psilocybin is the treatment most likely to benefit patients with existential anxiety when other treatments have failed; my ethical code from the B.C. Association of Clinical Counsellors tells me to act to my client’s benefit; federal law forbids me to use this treatment.
This is why, together with colleagues in the Therapeutic Psilocybin for Canadians project, I filed an application with Health Canada in January 2017, seeking a so-called “Section 56 exemption” — to permit us to provide psilocybin-assisted psychotherapy to patients with terminal cancer.
The research indicated it led to immediate, substantial and sustained decreases in depression, death anxiety, cancer-related demoralization and hopelessness.
It resulted in increased quality of life, life meaning and optimism. And these changes had persisted at a six-month follow-up.
Patients attributed improved attitudes about life and death, self, relationships and spirituality to the psilocybin experience, along with better well-being, life satisfaction and mood.
It is heartening to see research moving into Phase 3 clinical trials that will involve many more research participants. However, the foreseeable future for Canadians who need this game-changing therapy is not especially rosy.
At our current rate of progress, it may well still be years before psilocybin successfully completes Phase 3 trials and becomes available as an orthodox medicine.
Therapists risk criminal penalties
In the meantime, many Canadians with terminal cancer are also suffering from end-of-life distress, and are in dire need of relief — now.
They face serious and life-threatening illness. Their condition is terminal, so concerns about long-term effects of psilocybin are not relevant. They suffer from serious end-of-life psychological distress (anxiety and depression) to the point that it interferes with their other medical treatments. And this distress has not successfully responded to other treatments.
Psilocybin is currently a restricted drug, meaning that therapists risk criminal penalties if they aid or abet its possession. That means that we cannot recommend or encourage its use.
My professional Code of Ethics, however, states that our ethical duty is to act in a way that serves our clients’ “best interests.” The service we provide has to be “for the client’s benefit.” We must “take care to maximize benefits and minimize potential harm.”
A compassionate, humanitarian death
I agree with the Canadian medical establishment that, in ordinary circumstances, new medicines should be made available to Canadians only when they have successfully completed Phase 3 clinical trials.
But I contend that the patients described here are not in ordinary circumstances. They have terminal cancer. All other treatments have failed them; they have nothing left to lose. They have the right to die; surely they have the right to try!
These patients deserve access to a still-experimental but promising medicine on compassionate and humanitarian grounds. Because of their extraordinary medical straits, psilocybin now for them represents a reasonable medical choice; it is necessary to them for a medical purpose.
Our application to Health Canada seeking a “Section 56 exemption” will be ruled on very shortly.
We fully expect that it will be denied — for political, not scientific reasons. Justin Trudeau’s Liberal government is likely in no mood to loosen up on psychedelics before the dust from the legalization of cannabis has fully settled. I think the government would like it if someone else made that decision.
Violation of our rights and freedoms
If our application is denied, we intend to file for a judicial review, and if necessary, a lawsuit in Federal Court challenging that denial.
We believe that prohibition of access to psilocybin for a legitimate medical purpose violates a citizen’s Canadian Charter of Rights and Freedoms Section 7 right to “life, liberty and security of person.”
This clause has already been interpreted by the Supreme Court to imply that a citizen has the right to autonomy in making health-care decisions. Charter-based arguments have already led to success in three recent landmark medical cannabis cases.
We argue that what applies to cannabis also applies to psilocybin:
The prohibition of … cannabis “limits the liberty of medical users by foreclosing reasonable medical choices through the threat of criminal prosecution. Similarly, by forcing a person to choose between a legal but inadequate treatment and an illegal but more effective one, the law also infringes on security of person.” Supreme Court of Canada, R. v. Smith, 2015
One thing that unites all of us human beings is that we will die. Imagine if, when our time comes, we could all have the option to die peacefully, with acceptance, without anxiety.
When my 91-year-old father returned from the hospital after a bout of pneumonia and was readmitted scarcely a week later, his doctor suggested that hospice care was probably a good idea. He was extremely frail and barely able to walk. His overall health wasn’t improving.
Like most people eyeing hospice care as the end stage of medical intervention, I was reluctant to make that decision. What if he could get better? Wasn’t hospice only for people with a few weeks — or days — to live? Was I being unrealistic about his condition?
Such questions often torment families. It’s one of the most difficult health care decisions you’ll make because of hospice’s astounding recognition of mortality. According to the Centers for Disease Control and Prevention (CDC), hospice care involves more than 1.3 million patients and 4,000 agencies — most of them private — but it’s still not well-understood and often offered much too late.
How Hospice Works
Medicare pays for hospice care for people who are terminally ill, “with a life expectancy of six months or less, if the illness has run its normal course,” according to Medicare.gov. While that definition sounds muddled — many could live for only a few days or several years — it’s a different philosophy of care. It’s rare that hospice patients survive for half a year. The average hospice from 2011 through 2016 was 71 days or about 2 1/2 months, according for the Center for Medicare and Medicare Services.
Medicare defines hospice care as a “specially trained team of professionals and caregivers providing care for the ‘whole person,’ including physical, emotional, social and spiritual needs.”
At the core of hospice is palliative care — making the patient feel as comfortable as possible and not directly treating an illness. Medicare offers hospice through its Part A, but a patient must be certified by both a regular and hospice doctor that he or she has only six or fewer months to live. You still pay your regular Medicare Part A and B premiums, plus $5 co-payments for prescription drugs. (Note: Medicare supplemental policies can cover co-payments, depending upon the plan).
A Misunderstood Option
The major difference between hospice care and conventional treatment is no longer isolating and treating specific causes of health issues. “The biggest myth of hospice care is that you have to relinquish all treatments,” says Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging at Hunter College and the City University of New York (CUNY). “You’re only relinquishing ‘further extreme measures’ such as another course of chemotherapy.”
While hospice care can be offered in facilities, it’s generally given in the home and includes counseling, drugs and equipment like hospital beds. There’s also support and counseling for the family.
But the biggest barrier with hospice isn’t its end-of-life focus, it’s the fact that most patients and families choose it too late, says Finkelstein. Relieving pain — the centerpiece of palliative care — should be considered earlier rather than later in the process. And you don’t have to be terminally ill to receive it.
“The time for palliative care is anytime,” says Finkelstein. “Look at the situation from the patient’s and family’s point of view. Anytime something serious is happening [with pain management]: How do you want to handle it? You can employ a ‘pain team.’”
Making the Decision
After weighing what hospice care entailed, I enrolled my father with a local hospice care provider. The paperwork was simple: three Medicare authorization forms. While it hardly put my mind at ease over his state, I knew he would receive care that focused on day-to-day comfort instead of endless treatments and tests.
I sat down with the hospice provider and the care manager of his senior living center to discuss what hospice meant in practical terms. When would narcotics be administered? What happened beyond the six-month Medicare limit for coverage? Would I have some control over the kind of care offered?
Since I had health care power of attorney and my dad had dementia, I would be consulted on his care. He could qualify for more benefits if his conditions improved, which happens in a handful of cases. That was somewhat reassuring. Focusing on his comfort, the hospice company ordered a hospital bed to reduce the incidence of bed sores. They also increased his nurse visits and monitored his painkillers.
No heroic medical measures would be offered, though, which is hard for most families to accept. The hospice providers were trying to make my father feel as comfortable as possible and add a measure of peace to his life, which had been marked by a series of diagnostics for maladies that couldn’t be cured under ordinary means. He’d still be given antibiotics for frequent urinary tract infections, which are common in older people, but he wouldn’t be shipped off to the hospital at the first sign of trouble.
It’s Never Easy
The decision to enter into hospice care is painful. How can a family best approach it?
Try to get everyone on the same page. Evaluate the prospects of a loved one getting better with conventional treatments compared to the suffering that extensive medical care will entail. Does the person have multiple chronic conditions? Is the person gravely ill?
Sit down with a hospice provider, who can be recommended by a doctor, hospital or long-term care facility, and ask how the provider would respond to specific situations. If you’re searching for a hospice provider on your own, you can obtain a referral from Medicare (800-633-4227) or at Medicare.gov/hospicecompare. You’ll want to make your selection carefully; a new Government Accounting Office study of the Medicare hospice program found that “hospices do not always provide needed services to beneficiaries and sometimes provide poor quality care. In some cases, hospices were not able to effectively manage symptoms or medications, leaving beneficiaries in unnecessary pain for many days.”
Ask the provider staffers under what conditions they take a person to the hospital. What drugs will they use to relieve pain and how often? How do they handle overall management of care?
Hospice is less about what we think modern medicine should do and more about finding a small sense of serenity in one’s final moments. It may be little consolation to most families, but it’s a more compassionate approach that can strive to ease suffering.
As a society, we are not very sophisticated when we talk about serious illness and death. We talk of fighting, of battling against, of staying positive and of not giving up.
Of course, this has implications for those whose illness continues or worsens. Are they losing the fight? And what does it mean about their attitude? Have they given in?
In our research, recently published in Palliative Medicine, we found the power of language is particularly poignant when it comes to how clinicians talk about end of life care. It can lead to misunderstandings, but also sadly, even tragically, to suffering and missed opportunities.
We’re looking into this at the Victorian Comprehensive Cancer Centre’s Palliative Medicine Research Group. Based at St Vincent’s Hospital Melbourne, our group brings together clinicians, researchers and allied health professionals, seeking to effect positive and systemic change in palliative care practice.
Our language around illness is reflected in the media, as we read with excitement of “a breakthrough in the fight against cancer/dementia/heart disease” – insert your illness of interest.
However, palliative care in the media and in the lives of real people, of patients, is often discussed as “there was nothing more that could be done, so they went into palliative care”.
The language that we use has direct and very serious consequences. To say that “there was no more treatment, so they had palliative care” implies that palliative care is not treatment. This language serves to limit possibilities since it negates the opportunity to choose palliative care, and the benefits that it may provide.
Why does this language matter?
Well firstly, it propagates a misperception about palliative care. Contrary to “no more to be done” and “non-treatment”, palliative care is highly effective and beneficial.
It has been proven in clinical trials to ensure better pain and symptom relief and, for many, means better quality of life than when patients are solely cared for by usual health providers such as oncology, respiratory and cardiology services.
Palliative care has also been shown to improve patients’ satisfaction with care, as they have more information and understanding of their circumstances and the choices available to them. It means they are empowered to make decisions that match their values – which, for many, means less time in hospital, and being more likely to die at home.
Research has shown that palliative care means that when people do die, their families experience less distress and have better health outcomes themselves.
And it means, based on a number of studies, that people live longer. Yes, palliative care improves survival – as much as a number of newer chemotherapy treatments. And all of these benefits increase if palliative care is introduced early.
None of this sounds like “no more can be done” or a “non-treatment option”. Yet because of the language used and the associated stigma, patients (and doctors) are fearful of mentioning palliative care, much less to introduce it early.
Instead, patients think that palliative care equals death, and worse still, death in an institution “where people do things to you”, as one of our research participants said; where there are no choices.
This is the very antithesis of what palliative care seeks, and is proven to do.
And so, as if even the words ‘palliative care’ will themselves, bring about death, we avoid it until death is very close. Palliative care, raised in these circumstances, becomes linked with imminent death, and the cycle of misperception and missed opportunities (and poor care) continues.
These missed opportunities may include a lifetime of valuable things to be said to someone we love, a trip to a special place, or a chance to think through whether a further round of treatment will enable achievement of an important goal.
And poor care may include pain that is not well managed for six of the last eight months, or a young child that wonders if Dad’s illness was caused by something they did.
So what needs to be done?
We need to listen to the evidence. We need to think about the language that we use to speak about illness and death, to think about its impact for readers of today, and for patients of tomorrow.
We need to be sensitive and direct. And we need to learn to sit with the discomfort that not all is black or white, fighting or giving up, treatment or no treatment. That things that are hard to consider and face will inevitably mean hard conversations are to be had.
These conversations, though difficult, can be immensely rewarding and also may be the most important conversations for a person’s life. We all have a responsibility and a role to ensure our language facilitates understanding and choice, not its opposite.
A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.
But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.
Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.
One reason for this is that many people inaccurately think of palliative care as only care for the dying.
The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.
Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.
People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.
Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.
Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.
To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.
But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”
Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.
Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.
While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”
Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.
Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.
To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.
Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.
Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.
The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.
Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.
People who have been diagnosed with a terminal illness suffer a broad range of physical and emotional symptoms and other overwhelming struggles. Terminal illnesses are devastating diagnoses, and patients must learn to cope with the news that their disease cannot be cured.
When it comes to terminal illnesses, conventional medicine focuses on palliative treatment goals. This means doctors aim to make their patients feel as comfortable as possible in their last remaining weeks or months. Unfortunately, most of the drugs prescribed to terminally ill patients cause a host of unpleasant side effects, and some people flat out stop responding to conventional treatments. That’s where natural therapies come into play.
Medical cannabis is an excellent option as a complementary treatment solution alongside prescription opiates or other drugs for symptom management, but it can also be an effective alternate solution when patients suffer from side effects and no longer wish to take conventional medications.
Studies on medical cannabis and terminal illness have proven its effectiveness in treating specific symptoms that are often associated with end-of-life difficulties. Medical cannabis is a safe remedy for maintaining quality of life and providing comfort and relief for patients with terminal illnesses.
What Is a Terminal Illness?
Terminal illness is a broad term used to describe any kind of illness that is incurable or untreatable. Patients with a terminal illness have been told by their medical team that they have a certain remaining life expectancy and their disease will likely result in death. Illnesses like AIDS or cancer can be diagnosed as terminal illnesses when the disease is too advanced to be treated.
One of the primary issues surrounding a terminal illness is the psychological trauma associated with the diagnosis. Many patients fall into a deep depression and may even turn to substance abuse. Additionally, many of these patients have such advanced illnesses that they suffer from chronic pain, which only further amplifies their psychological symptoms.
Sadly, terminal illnesses affect far too many families. In 2006, the Pew Research Center reported that 42% of Americans know a friend or relative who is suffering or has suffered a terminal illness. Though this is a shocking statistic, but it’s made clearer when looking at the rates of terminal illnesses among Americans.
n the United States, cancer is the second leading cause of death. On average, more than 1,500 Americans die each day from cancer. HIV/AIDS is another potentially terminal illness taking far too many lives. In 2014, 6,721 Americans died from HIV or its complications, although the death rate associated with AIDS is steadily declining in the United States.
An under-recognized potentially terminal illness in the United States is kidney disease. According to the National Institutes of Health, advanced kidney failure kills more Americans than breast or prostate cancers. In 2013, 47,000 Americans died of kidney disease.
With these high rates of terminal illness in American society, it’s no wonder many of these patients are turning to medical cannabis as a natural end-of-life therapy.
Terminal Illness History and Outlook
The landscape of illnesses has changed drastically in the past 100 years. Thanks to greater global disease awareness and advanced medical technologies, people are living longer than ever. But illnesses themselves have evolved. A hundred years ago, it was common for people to die from infections and other acute conditions that could not be treated medically.
Today, in the industrialized world, it’s less common for people to die from infections. However, chronic illnesses attributed to our environment, lifestyles and the fact that people are living longer are the new medical challenge our society faces. Generally, our high-fat diets, sedentary lifestyles and increased exposure to synthetic products and chemicals have led to new types of terminal illnesses to combat. Cancer is a potentially fatal disease that is claiming lives at an astonishing rate.
In 2003, the World Health Organization, recognizing the global cancer epidemic, published a report estimating that by 2020, cancer death rates would increase by 50% to 15 million annually.
Thankfully, since those findings were published, medical technology has advanced, and many of these expected deaths are now preventable. There are still far too many cases where cancer results in terminal illness. This is why different therapy approaches, such as medical cannabis, can help address the cases where cancer becomes fatal.
Terminal Illness Causes
There are many different types of terminal illnesses all resulting from different causes and risk factors. Here are some of the terminal illnesses patients are diagnosed with as well as their causes:
Cancer: Cancer is a broad term used to describe several different diseases that can affect virtually every part of the body. There are many possible causes of cancer depending on where in the body it first develops. All cancers are characterized by the mutation of normal, healthy cells into abnormal, cancerous cells. By nature, cancer cells divide and spread quickly. As they spread, they form tumors — lumps of cancerous tissue. If left untreated, tumors will begin to shut down nearby organs, as the immune system can no longer fight against the attacking cells.
HIV/AIDS: HIV is acronym for the human immunodeficiency virus. It’s caused by a sexually or blood transmitted infection that attacks a person’s immune system. After years of being infected with HIV, a person’s immune system eventually becomes so weakened they develop AIDS — acute immunodeficiency syndrome — which is fatal.
Kidney Disease: Kidney disease is a serious, potentially terminal illness that damages a person’s kidneys. Damaged kidneys are unable to filter the blood properly, which causes waste and toxins to build up inside the body. Sadly, initial symptoms of kidney disease often go unnoticed until the condition becomes advanced. If kidney disease reaches the most advanced stage — kidney failure — the patient is no longer eligible for a kidney transplant or dialysis and the condition becomes fatal.
These conditions are some of the many well-known terminal illnesses that exist. Countless other diseases and conditions are considered terminal when patients stop responding to treatments or when the illness becomes too advanced to treat.
Terminal Illness Symptoms
While there are many different conditions that cause terminal illnesses, each having their own unique symptoms, most patients experience a similar set of symptoms during the end stages of life. These common symptoms include both physical and emotional or mental symptoms.
Here are the common symptoms experienced by people with terminal illness:
Physical Symptoms. When patients suffer advanced stages of diseases, there are common physical symptoms that occur. These symptoms include chronic pain and general weakness. Chronic pain affects more than 60% of cancer and AIDS patients. Other physical symptoms of terminal illness include:
Chronic weight loss
Loss of appetite
Fatigue and insomnia
Emotional Symptoms: A terminal illness diagnosis is tragic and earth-shattering for patients and their families. Because of this, there is a range of different reactions among patients. Patients can experience emotions such as:
Many patients diagnosed with terminal illness go on to develop depression and anxiety. The Baylor University Medical Center found up to 77% of terminally ill patients suffer depression symptoms. Other reports indicate up to 20% of terminally ill patients are diagnosed with major depression — a serious and chronic grade of depression. In many cases, anxiety and delirium also accompany feelings of depression.
Conventional Terminal Illness Treatments
Treatments for terminal illness are focused on improving a patient’s comfort and quality of life in their remaining time. Terminal illnesses, however, are untreatable in the sense that they cannot be cured. Terminal illness treatments are referred to as palliative, meaning they reduce pain without an attempt to cure the disease.
Treatments focus on alleviating pain, improving strength and appetite and managing any symptoms of depression, anxiety and grief.
Here are the types of conventional treatments and care given to patients with terminal illness:
Opiates. Opiates are a class of drug that suppress the central nervous system and provide pain relief and a sense of euphoria. Morphine and hydromorphone are two of the most commonly prescribed opiates to relieve pain during end-of-life. Fentanyl, oxycodone and methadone are other opiates used to alleviate chronic pain for patients with terminal illness.
Anti-nausea medications. Nausea and vomiting are common terminal illness symptoms that can be managed effectively. Haloperidol is an anti-nausea medication that doctors prescribe to control these symptoms. Haloperidol can be taken orally or via injection.
Antidepressants. In many cases, doctors may prescribe terminally ill patients with antidepressants (SSRIs). Quite understandably, stress and depression arise with a patient’s knowledge of terminal illness. The physical and emotional suffering coupled with knowledge of impending death make some patients want to commit suicide, become overly stressed or too depressed to respond well to care-giving methods. Unless antidepressants are already part of the medical regimen, the patient may not respond to them in time to have any benefits before death.
Psychological/spiritual counseling. Doctors and experts advise patients to seek psychological or spiritual counseling to help cope with a terminal illness. Counseling helps patients better understand their condition, be better equipped to deal with it and address symptoms of depression and anxiety. Often, psychological and spiritual counseling for terminally ill patients will include the person’s family members.
Medical Cannabis for Terminal Illness
Unfortunately, many patients with terminal illnesses struggle with the types of palliative treatments they’re prescribed. Opiates and antidepressants both come with a host of side effects that can aggravate many of the end-stage struggles people experience. Medical cannabis is an alternative or complementary treatment option that many people with terminal illnesses have had success with.
The cannabis plant contains two organic compounds that provide medical benefits: tetrahydrocannabinol (THC) and cannabidiol (CBD). THC is the compound responsible for the psychoactive effect associated with cannabis. It’s also shown to possibly reduce pain, relieve nausea and boost appetite.
CDB is the other compound that doesn’t produce psychoactive effects. However, it does treat symptoms like pain, nausea, depression and anxiety, which are all associated with terminal illness.
Legal medical marijuana such as Marinol is approved by the FDA. In some states, smoked marijuana is also legal under state law but still illegal under federal law. Both forms of medical marijuana have been shown to help with pain. They are not pain relievers, but can work with opiates to make them more effective.
According to UCSF, they conducted a study using cannabinoids with opiates and found that patients showed up to 95% decrease in chronic pain when using inhaled marijuana vapor with opiates such as morphine. It also showed that the dosages of opiates could be decreased when opiates are used in conjunction with cannabinoids.
Medical Cannabis for Alleviating Symptoms
One of the strongest arguments for medical marijuana and terminal illness is for the treatment of nausea, vomiting and loss of appetite. Cancer patients that are undergoing chemotherapy have benefited greatly from the availability of FDA approved medical marijuana. It is known to reduce nausea and vomiting, often when more traditional medical treatments for the symptoms fail to produce significant results. Nausea and Vomiting can occur with several terminal illnesses such as cancer and AIDS – related illness.
Cancer and AIDS can also result in loss of appetite. It is expected at the very end of life that appetite decreases until it is nonexistent in many cases. However, it is often good for patients to eat as much as possible until it becomes impossible. Medical marijuana can help with that and is prescribed for just such occasions. In fact, the hunger-inducing effects of medical marijuana are so well known that they are even known colloquially as “the munchies” in the recreational marijuana use community.
Medical marijuana’s effects are felt soon after ingestion and virtually immediately after inhalation. There is no waiting period as there is for antidepressants. There is no guarantee that it will alleviate depression, stress and suicidal thoughts. However, it is useful for its fast-acting benefits. There is some research to suggest that medical marijuana can help some of the symptoms associated with depression, particularly difficulty sleeping, but it is still an under-researched area of medical care.
Best Cannabis Strains for Terminal Illness
Medical cannabis a versatile and natural therapy for people diagnosed with a terminal illness. The diverse health benefits of the cannabis plant address many of the common symptoms terminally ill patients face.
Northern Lights. Northern Lights is an Indica strain of medical cannabis. Northern Lights help with many of the major symptoms that terminally ill patients experience, including pain, depression, insomnia and loss of appetite.
Sour Diesel. Sour Diesel is a Sativa strain of medical marijuana for terminal illness. Sour Diesel is an excellent strain for managing terminal illness symptoms like pain, depression, fatigue and loss of appetite.
Sunset Sherbet. Sunset Sherbet is a hybrid strain of cannabis, meaning it’s crossed between the Sativa and Indica strains. Sunset Sherbet helps relieve terminal illness symptoms like nausea, pain, insomnia and depression.
There are countless different strains that can offer relief for terminal illness symptoms. Be sure to consult your local dispensary experts for more information on choosing the right strain for you.
Best Cannabis Uses for Terminal Illness
If you’re planning to use medicinal marijuana to treat your terminal illness symptoms, then it’s important to decide how you’ll consume it. You have a few different options. Here are some of the options for consuming medical cannabis for terminal illness:
Inhalation. Smoking marijuana, or inhaling it, is likely the most common method of use for medical cannabis. In addition to being easy and convenient, inhaling marijuana also provides fast-acting relief. For people suffering from chronic pain or depression, this is an important consideration.
Edibles. Another option for consuming medical cannabis for a terminal illness is to take it orally. This can be done through a cannabis-infused edible product such as chocolate. While taking cannabis orally delays the effects, it is a much longer-lasting effect than inhaling marijuana. Additionally, many patients prefer edible products over smoking because it doesn’t cause respiratory problems.
Drinkables. Drinkable cannabis products are another great innovation when it comes to methods of consuming medical marijuana. Drinkables are cannabis-infused drinks that are easy and convenient to use. Drinkables some in soda-like products, or you can brew cannabis tea. Like edibles, the effects from drinkable cannabis products tend to be stronger and longer-lasting.
Cannabis Side Effects and Precautions
Medical marijuana for terminal illness is generally very safe to use. There are limited side effects for most people who consume medicinal cannabis products. Some patients who are suffering major depression because of their terminal illness diagnosis may be concerned that marijuana products may heighten their depression symptoms. However, there is no research to suggest that prescribed medical marijuana can harm the terminally ill.
Additionally, marijuana does not interact negatively with other end-of-life treatments. No amount of it will result in fatal overdose. Further research is necessary to see if these trends in medical marijuana use hold true. However, its use for terminal illness is promising thus far.
If you’re planning to take medical cannabis for terminal illness symptoms, it’s important to follow the dosage instructions exactly as prescribed. For many people, the effects of marijuana make take a while to kick in. This is why it’s important to start with a small dose and gradually build from there.
Medical cannabis is a safe, alternative remedy for treating many of the terrible symptoms associated with terminal illness. If you or someone you love has been diagnosed with a terminal illness and would like to learn more about medical cannabis as an alternative treatment option, make an appointment with a local, qualified physician through MarijuanaDoctors.com today or sign up for our newsletter.