Hospice a word that is synonymous with “end of life” care. Palliative – a little more confusing and often confused with ‘end of life’. The two are very different therapies but Palliative Care is an offshoot of Hospice.
Hospice is a service for patients who are terminally ill and have decided not to take any more medication that might “cure” them (i.e. chemotherapy for a cancer patient). The focus becomes relief from pain and symptoms and not a cure. There are some who say that going into Hospice means you’re giving up or that you will no longer receive the medical care you need. That is not true – you have chosen to focus on your quality of life not the quantity and the medication used is to do just that.
A Hospice team usually includes a doctor, nurse, social worker and chaplain (if you wish). They work together to meet the patients physical, emotional and spiritual needs. This team also cares for the family who can be against the choice to, in their eyes, “give up.” There is counseling, hugs and support from a good Hospice team – my Mother’s team was unbelievable and supported and counseled our entire family through the last three days of her life.
To qualify for Hospice your doctor must state that the patient’s death is expected in 6 months or less. If a patient chooses Hospice then changes his or her mind it isn’t an issue. The patient simply goes back into the curative therapy with their doctor. You can also change your mind again and be readmitted . . . there is no pressure – it’s about what you, the patient want.
Palliative Care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the pain, symptoms and stress of a serious illness for both the patient and family.
Again, it’s a team of specially-trained doctors, nurses and other specialists who work in partnership with the patient’s other doctors to provide an extra layer of support. It can be used at any age and at any stage in a serious illness. The services are offered in tandem with the curative treatment. A good example of Palliative Care use is in Parkinsons or Multiple Sclerosis when there are flare ups.
Both Hospice and Palliative Care are paid for by most insurance companies including Medicare and Medicaid. Both are offered in your home, nursing homes, assisted living centers, hospitals and provide respite care when the caretaker family needs a break.
What these two services offer us are choices in treatment for serious illnesses. We each have our own journey and whilst none of us hope it comes to either of these services, we can make informed decisions for us or our loved ones knowing that they exist. No matter how strong you are physically and emotionally – watching a loved one suffer is often intolerable. There are teams out there to support and comfort. Use them if you need them.
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.