— How our life ends isn’t always up to us, but that question too often must be answered by loved ones and health care workers who don’t know what we would want.
His name was Bob. He was 82. The way he decided to die should speak volumes about the way the rest of us can choose to live.
For many years, Bob had suffered from a serious chronic heart condition. With Bob’s health woes mounting — and his quality of life suffering — a team of surgeons and nurses prepared in a hospital to do exactly what our medical system is programmed to view as the next step: open-heart surgery.
So Bob decided to take the biggest chance of all. He said, Stop. Let’s pause for a moment. Let’s talk about what we’re about to do here and, especially, about who wants to do it and why.
He met with his daughter and son, and together the family decided that a major operation on an 82-year-old man with a chronic cardiac problem just didn’t make sense for his own values or life. He didn’t want his last breath to be in a hospital surrounded by strangers. He canceled the surgery, returned home, received palliative and hospice care and died in peace in his own bed surrounded by loved ones.
Engaging empathy and humanity
Our health care system is set up to engineer medical miracles. We have the doctors with the skills, the hospitals with the equipment and the biomedical engineers with the technology. Too often, what we lack, though, is the crucial pause to engage our empathy and humanity.
As a critical care nurse and CEO of a complete senior health company, I have seen too many seniors traumatize themselves — and their loved ones — by delaying any talk about death. That’s why I found inspiration in Bob, his family and their difficult personal choice.
How do we want our life to end? It’s not always up to us, but too often that question must be answered with a hunch or a guess by our loved ones and our health care workers.
Fewer than half of all Americans over 50 years old have recorded their medical preferences for the end of life, according to a poll by AARP and the University of Michigan. Why? Of the people without any medical directive document, 62% said they had not gotten around to it, 15% did not know how, 13% said they do not like talking about death, 13% did not think it was necessary, 9% said no one asked them to, and 7% were deterred by cost.
The financial consequences of death go unplanned, too. More than half of Americans don’t have a will, Gallup found, and the avoidance even extends to those with the most to lose: One in five Americans with investable assets of $1 million or more have no will, according to the Wall Street Journal, citing a Charles Schwab survey.
Avoiding the gut-wrenching choices
Nobody enjoys talking about death, but ducking the subject just saddles everyone else with gut-wrenching choices. Is it really fair to make your spouse or kids wring their hands over the decision to put you on a feeding tube, or a ventilator, or dialysis? After a certain age, or after certain prior health conditions, should you be resuscitated after a major stroke, heart attack or seizure? What if dementia strips away your ability — or your spouse’s ability — to make key life-or-death decisions?
In a medical emergency, the reality is that health care professionals will begin life support immediately unless there is a clear directive saying you don’t want it.
That will be the preferred decision for many Americans with personal or religious reasons to always extend life. A Kaiser Family Foundation/The Economist poll shows, however, that only 19% of Americans believe the top priority for end-of-life care is preventing death and extending life as long as possible. A far greater majority, or 71%, says it’s more important to help people die without pain, discomfort or stress.
When asked to list the leading preferences for their own deaths, the top priority, listed by 87% of respondents, was to make sure their family was not burdened financially by their care. The least important priority was to live as long as possible.
For people who want a good death more than a prolonged death, the U.S. has excellent palliative care and hospice care. Death can come with more compassion than pain, in your home instead of a hospital, surrounded by loved ones who know your hopes instead of medical professionals who can only guess.
What you can do
Try putting yourself in the shoes of your family, friends and doctors. What should they know about your last wishes if you are too incapacitated to tell them?
The best solution is to write a legally enforceable will that has clear medical directions and responsibilities. Many states allow you to download online advanced care directives. Work with a lawyer and consult your primary care providers for guidance.
You owe the key people around you an indisputable written record or personal video interview spelling out what should and should not be done at the end of your life.
Bob was brave enough to be clear about his final wishes with his family. We should be brave enough to follow his example.
These were the words the doctor used to explain that my husband, Nigel, had three to five years to live, and I felt numb.
Moments like this are not at all what you imagine.
There’s no darkening sky, no rumble of thunder. Your heart doesn’t miss a beat and the world doesn’t hold its breath. Everything remains the same.
And yet, for us, nothing would ever be the same again.
The first sign that something was wrong with Nigel came in the summer of 2006 when I noticed the gradual deterioration and slurring of his speech.
‘My tongue feels like it doesn’t belong to me,’ he said, nonchalantly, to me one morning. ‘One minute it’s twisting all over the place, the next it’s as heavy as a brick.’
He carried on about his business – washing his clubs before heading out to play a round of golf with his brother – as if this admission was the most normal thing in the world. But the words stuck with me. I was concerned.
To put my mind at ease, we spoke to our GP who, at our request, then referred us to a speech therapist.
She immediately recognised Nigel’s speech problems as dysarthria, a condition where you have difficulty speaking because the muscles you use for speech are weak – but she didn’t know the cause.
A quick Google search will tell you that dysarthria can be caused by conditions that damage your brain or nerves and, to be safe, she advised us to see a neurologist to find out. We did and were told to prepare for a barrage of tests.
Nigel endured blood tests, MRI scans and an electromyography (EMG) test that detects neuromuscular abnormalities, all so that we could eliminate other diseases and find out exactly what was going on.
‘It’s like a liner on the horizon,’ advised the doctor. ‘Not until it gets closer can we be sure what it is.’
MND is a distressing, debilitating disease that ultimately robs its victims of the ability to move, speak, eat and breathe.
The night he was diagnosed, as we researched MND on the internet, Nigel found a documentary about a man with MND who had gone to Dignitas – a Zurich-based nonprofit that provides physician-assisted suicide to members with terminal, severe physical or mental illnesses.
‘Poor man,’ I said, but Nigel thought differently. ‘Not a bad way to go,’ he said.
At the time, I thought it was a throwaway comment. Besides, we had treatment and life to get on with, so we never mentioned Dignitas again.
In the years that followed, this degenerative disease slowly and savagely destroyed Nigel’s body.
First his speech was affected, then slowly his legs followed. He went from using a cane to a walker, then eventually a wheelchair. The strength in his neck also went and he needed a neck brace to sit up straight.
Around six years in, he lost strength in his arms. My strong, physically active husband – who, as a scaffolder, once thought nothing of carrying two, 13 inch boards on a single shoulder – could now barely lift his toothbrush towards him.
Our lives were totally transformed by his diagnosis.
We went from being very busy and sociable people to being dominated by procedure in caring.
I cared for Nigel alone for as long as I could, aided by our daughter Ellie, who gave up her job to help us both, but we gradually needed more support.
Towards the end, Nigel had limited movement in his hands and arms and could do nothing for himself. Our home became a private hospital ward and we had a team of carers covering 24 hours a day.
Yet throughout, not once did Nigel bemoan his fate. Nigel, the man, remained inside that ravaged body: gregarious, funny and always joking.
Julie with husband Nigel
In 2009, he took part in a medical trial that was searching for a cure for MND. While we were in the hospital he saw a filing cabinet labelled ‘deceased.’ He laughed and said, ‘There’ll be a slot in there for me soon.’
Sadly, ‘soon’ came a lot quicker than any of us would have liked.
Nigel’s MND had always followed a pattern of plateaus and pits. Sometimes the plateaus went on for months and we would get used to managing his disability. But then he would have a period where his disabilities would get much worse, and he would be much weaker as a result.
And, in August 2016, he suffered a particularly bad episode.
He felt that the disease was starting to attack his spirit and sense of self; that he was disappearing.
Adamant that it would not rob him of his humour and personality, he decided to take control.
‘I’ve found the “cure”,’ he announced the following September. I held my breath as he explained. ‘I’m going to Dignitas. I want to die while I am happy and can still smile.’
I wanted to protest but Nigel knew his death would be slow. That when his astute, tortured mind became entombed in a silenced, paralysed body, he would be both alive, and dead.
Nigel and Julie in happier times
‘I could be buried alive for years, unable to drag a scream from my throat,’ he said. And I knew I couldn’t deny him this final wish.
From that moment on the mission was underway. Nigel opened communication with Dignitas, we told immediate family, close friends and his doctors the news.
Plans were carried out in secret. Applying to die at Dignitas is a bureaucratic minefield and there are several prerequisites – including the need for unassailable judgement and sufficient physical mobility to administer the lethal drug yourself. This is not to mention the mountain of medical reports we had to send off.
Six weeks later, the letter granting Nigel the ‘provisional green light’ arrived. He was elated. He had his ‘cure’ and his dying day was determined.
On our last Christmas Day together, in December 2016, when all the family were gathered, he was in charge of music – he had an extensive playlist on his iPad – and he played the first two words of George Michael’s Last Christmas.
He stopped the music. Then played the two words, ‘Last Christmas…’ again. Then stopped it, and played them again. He thought it was incredibly funny.
That was Nigel.
Nigel gradually lost the use of his legs
The only way to transport a severely disabled man from Scarborough to Zurich was by road. And after a lot of searching, we managed to hire a fully adapted motorhome which we christened ‘Mabel’.
My son-in-law then drove me, Nigel and our three children, Craig, Ellie and Becky, for 24 hours non-stop, and we arrived at Dignitas on the morning of April 25, 2017.
I’m not sure what I expected – a hospital, perhaps? – but it all looked very ordinary.
From the outside it seemed nothing more than a small, blue cladded house in the middle of an industrial estate, with a Lidl supermarket on the corner. And inside, the rooms were basic, with nothing more than a sofa, an electronic, adjustable bed, dining table and chairs and kitchen on offer. But then, I suppose, no one ever stays for too long.
Ahead of the procedure, Nigel had two meetings with a doctor affiliated with Dignitas who would determine whether his wish for accompanied suicide was granted. They needed to officially determine that there had been no coercion, that he was of sound mind and really understood what would happen if they proceeded.
Nigel knew of course, and was determined as ever. So his wish was granted.
We had two escorts who were both very nice, calming and welcoming, and carefully explained what would happen next.
Nigel and Julie had a loving, close-knit family
‘Are you sure you want to do this, Nigel?’ said one of them. ‘Definitely,’ he replied.
Nigel signed the papers and then my three children and I said our final, agonising, tearful goodbyes.
Craig went first. He collapsed into Nigel’s embrace before saying, ‘You’ll always be my hero, Dad.’
Ellie followed close behind with tears pooling in her eyes. She kissed him on the cheek and said: ‘I’ll miss you, Dad. You were always there for me, and in my head and my heart, you always will be.’
Becky was up last and after smothering her tears by burying her face in his neck she rested her palm against his cheek and said: ‘You can stop pedalling now.’
She was rewarded with the sunniest of smiles and an extra hug. ‘Thank you, Becky. I will. But you can’t.’
Finally it was my turn. Nigel held out his hand for me and I couldn’t help but peer into those fathomless pools. I knew in that moment I would never again see or feel, for as long as I lived, such overwhelming and unconditional love.
‘It’s been a joy to be your husband, Julie. You’ve made me very happy,’ Nigel said.
‘You’ve made me happy too. I’ll miss you, darling.’ I brushed my lips with his and dropped a kiss on each eyelid. ‘I love you, Nig.’
Nigel and his family
With one final sigh he turned to us and said, ‘I’m ready’.
After that, my children and I could do nothing but stare as the contraption pushed the barbiturate into Nigel’s body. Once the syringe had emptied, we rushed to enfold him in our arms.
We embraced him as he slipped into unconsciousness. I cradled him as his body slumped. We clung to him as the sporadic rasp of his breathing faded to a muted hush and the soft whisper of his breath was no more.
The only man I will ever love was dead.
Having to tear ourselves away from his body, to leave him there with strangers, was utterly devastating. But part of the paperwork Nigel signed gives Dignitas the power of attorney and enables them to organise the cremation, acquire a death certificate and inform all appropriate authorities.
That meant Nigel would be cremated without a single mourner. Nobody would place a hand upon his coffin and bow their head in sorrow. Nobody would shed a tear for his loss and there would be no kind words to mark the life of this brave, funny, exceptional man.
Even if we’d wanted to do something, Dignitas advises against repatriation of the body as, apart from it being very complicated, it would likely trigger a police investigation into his death.
Instead, we paid Dignitas to arrange for his ashes to be flown to Heathrow where a funeral director would collect the urn and bring it home. His ashes arrived home about three weeks later.
Nigel has been gone seven years now, but it still doesn’t feel real. We are a close, supportive family and help each other through, and it does help knowing that this is exactly what Nigel wanted. That he could die smiling and with dignity gives us comfort.
No dying person should have to endure the journey he did – especially when you consider that Nigel had to do it while he still could and therefore definitely died sooner than he needed to. We could have had another six months, even a year.
And no family should have to face the torture of walking away from their loved one’s body. For us, that will alway be the hardest part.
Giving a terminally ill person control and choice over how they die transforms the remainder of their lives and enhances the quality and pleasure of their remaining days immeasurably.
I cannot believe that it is beyond the wit of any British Parliament to devise a law that not only protects vulnerable people, but protects dying people and gives them control, choice and dignity in their dying.
— An end-of-life care specialist reflects on how Medicare’s regulations for enrolling in hospice exclude many dementia patients who need it the most
by Maria Silveira, M.D., M.P.H., FAAHPM
Jimmy Carter, who chose to forgo aggressive medical care for complications of cancer and frailty in February 2023, recently reached his one-year anniversary since enrolling in hospice care. During this time, he celebrated his 99th birthday, received tributes far and wide and stood by the side of his beloved wife, Rosalynn, who died in November 2023.
Hospice brings a multidisciplinary team of providers to wherever a patient lives, be it their own home or a nursing home, to maintain their physical and psychological comfort so that they can avoid the hospital as they approach the end of life.
Hospice is not the same as palliative care, which is a multidisciplinary team that sees seriously ill patients in a clinic or hospital to help them and their families with symptoms, distress and advance care planning.
In my experience caring for dementia patients, the underuse of hospice by dementia patients has more to do with how hospice is structured and paid for in the U.S. than it does patient preference or differences between cancer and dementia.
Rosalynn and Jimmy Carter campaign for the presidency in 1976.
The role of Medicare
In the U.S., most hospice stays are paid for by Medicare, which dictates what hospices look like, who qualifies for hospice and what services hospices provide. Medicare’s rules and regulations make it hard for dementia patients to qualify for hospice when they and their families need support the most – long before death.
Medicare began assessing the potential benefits of covering hospice care during Carter’s administration. The service gained popularity after Congress formalized a payment structure to reimburse hospice providers through Medicare in 1985.
At the time, lawmakers were responding to the realization that the cost of care at the end of life was the fastest-growing segment of Medicare’s budget. Most of those expenses covered costs for hospitalized patients with advanced incurable illnesses who died in the hospital after spending time in intensive care units.
Congress believed hospice would not only give seriously ill Americans an alternative to a medicalized death but would also help control costs. So it required hospices to provide holistic care to entice people to enroll in this new option.
The new Medicare coverage allowed hospice care to follow the patient wherever they lived, at home or in a nursing home. It would support families as well as patients.
These remain among hospices’ core values to this day.
A hospice nurse discusses how end-of-life care can become a life-affirming experience.
Impossible trade-off
In exchange, people enrolling in hospice would have to forgo other kinds of care, such as seeing specialists or being admitted to a hospital.
But letting go of specialists is a nonstarter for many patients.
Researchers have found that people with life-limiting illnesses like dementia are half as likely to enroll in hospice when they want to continue treatments they cannot receive in hospice.
Psychiatrists and geriatricians who treat dementia, and the psychologists, nurses, social workers and others who support them, are invaluable to families struggling to manage a dementia patient’s disruptive and sometimes violent behavior. They adjust and rotate medications such as antidepressants, antipsychotics, anti-epileptics or sedatives to help their loved one experience less anxiety, agitation or depression as their memory fades.
These adjustments are the norm for many patients with dementia who are particularly prone to side effects such as agitation or drowsiness. Specialized dementia teams are difficult to give up in exchange for hospice clinicians who are generalists following a protocol and adhering to a short list of approved medications.
But that is what Medicare currently asks these families to do.
The best of both
Hospice advocates and palliative care providers like myself believe dementia patients should have access to both specialists to provide expert guidance and hospice providers to support the care at home.
Even when dementia patients and their families are willing to forgo specialists and hospitalization, they are unlikely to meet Medicare’s stringent criteria for hospice, which were designed to limit hospice to patients who are expected to die within six months.
It’s so difficult to qualify for hospice under a dementia diagnosis that one of my colleagues is known for saying, “If you want to get a dementia patient into hospice, find a cancer.”
Medicare’s criteria require that people with dementia not only depend upon others for help with toileting, transferring, bathing, walking and personal hygiene but also that they be bedridden, incontinent, minimally verbal and have a terminal complication of dementia such as aspiration pneumonia, recurrent urinary tract infections, significant weight loss, or bed sores.
More importantly, Medicare’s hospice benefits do not provide patients with dementia and their families the support they need most – hands-on care.
Most people are shocked to hear that, aside from providing a bath aide a couple of times a week and a home health aide for brief periods to give a family caregiver a break, hospice does not provide the hands-on care that dementia patients – and, frankly, anyone who is in hospice – requires.
Monitoring, toileting, hand-feeding, repositioning, ambulating, medication administration and wound care are left up to family caregivers.
Families of people with dementia must either sacrifice their personal well-being and livelihoods to care for a loved one at home, hire a professional home health aide, which costs from US$30 to $50 an hour, or place the loved one in a nursing home. The latter is paid out of pocket unless patients qualify for Medicaid. And hospice care, as currently structured, does nothing to help with that.
My heart breaks for people like the patient with early dementia I met recently. His daughter-in-law – his sole caregiver – requested he be enrolled in home hospice, only to find out that not only did he not qualify for hospice, but that hospice would not provide the hands-on support they needed.
“So, unless we can afford to pay for an aide or place him in memory care, I’m all the hands-on help he’s got?,” she asked. “I’m afraid so,” I answered.
Given this impossible choice, it’s no surprise that Rosalynn Carter only entered hospice near the end of her life.
Carla Thompson has worked in hospice care for more than two decades, and she knows first-hand just how difficult it can be to make end-of-life decisions.
“You can’t always see the future,” says Thompson, a registered nurse and administrative director for Bon Secours Home Health & Hospice. “When you’re given a diagnosis, you have all these treatment options in front of you. You have to make decisions to keep trying to cure the disease or choose to live with it, focusing on comfort and spending time with family.”
Thompson’s daughter Jessica died last year in hospice services at the age of 31. She fought fiercely for years, but when her breast cancer came back despite aggressive treatment, the family knew it was time to enlist hospice care.
“Jess wasn’t laying in the bed waiting to die,” Thompson says. “She was able to stay home for three months, get the support she needed, and spend time with her four children. She was given medications to help her be comfortable and functional for as long as she possibly could. She was at peace.”
Her hospice team managed her pain and symptoms, brought in a hospital bed and other equipment and provided frequent medical care, services that Thompson says are a blessing for patients as well as their caregivers.
Bon Secours is one of about two dozen hospice providers in Central Virginia. On any given day, hundreds of Richmond-area nurses, chaplains, social workers, home health aides, volunteers and physicians are paying home visits to terminally ill patients, providing them with critical and compassionate support.
Destigmatizing Hospice
While the concept of hospice care dates to medieval times, the first hospice practice in the United States was founded just 50 years ago by a nurse, two doctors and a chaplain who believed patients should pass in their own comfortable environment. Since then, it’s expanded to many providers in all states with two major directions: palliative care and hospice care. In most cases, patients in palliative care are still seeking active treatment, while patients in hospice have a terminal diagnosis and have forgone or exhausted treatment options.
Zach Holt, CEO of Crater Community Hospice in Petersburg, says after 15 years in the business he’s still surprised how many people have misconceptions about hospice. His company is part of a statewide coalition of hospice services working to raise awareness of its benefits. According to a recent report by American Health Rankings, Virginia is 30th in the nation for hospice use, with less than half of Virginians who are eligible for hospice choosing services.
“There’s a big stigma,” Holt says. “People think it’s designed for your last days of life when, in reality, it’s designed for your last six months of life. Studies have shown people across all disease states typically live longer on hospice than they do not on hospice. Our specialized teams are equipped to give patients a higher level of comfort.”
Trish Evans, a registered nurse and director of VCU Health Hospice, admits that hospice is a scary word and fear is a contributing factor for low utilization. “People don’t want to think about death and dying,” she says. “But it’s not about giving up, it’s about your quality of life. It’s a choice on how you want to spend your time with a terminal diagnosis if those are the cards that have been dealt to you.”
Holt encourages Virginians who qualify for hospice to sign up earlier, before they are actively dying, to receive the full benefit. According to the National Hospice and Palliative Care Organization, the median stay for patients in hospice care is 18 days, while Medicare approves stays that are 10 times longer.
Another misconception that leads people to avoid hospice is the possible high cost; in most cases, it’s financially reasonable. According to Debt.org, more than 90 percent of hospice care is covered by Medicare, and patients may be covered through private insurance and charity care.
On the personal end, Evans points out that some believe hospice patients are permanently bedridden at home. “Life can go on,” she says. “There are hair appointments and vacations and family events. We want to give patients the support they need and the comfort they need to continue to do those things before the end stage of their disease.”
Pediatric Hospice Care
When the unimaginable happens and a child is given a life-limiting diagnosis, Noah’s Children provides palliative and hospice services at no cost to families. While run by Bon Secours Richmond, Noah’s Children partners with all health systems in Central Virginia to help families navigate the most harrowing times.
In addition to nurses, physicians, social workers and chaplains, Noah’s Children employs a music therapist, an art therapist and bereavement counselors who visit the patient’s home. They also offer programming for parents and siblings. Nurses are available to attend doctor’s visits, helping parents manage complex treatment plans from multiple sub-specialists.
“We want to debunk the myth that we’re focused on death,” says Dr. Kelly Lastrapes, Noah’s Children medical director. “We’re focused on the best life children can live for as long as they can.”
Planning Ahead
Holt recommends that everyone of all ages have an advanced directive, a legal document that indicates an individual’s health care wishes. “As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations,” he says. “I see close-knit families get ripped apart when they haven’t discussed end-of-life care. One sister thinks one way, one sister thinks another, but Mom never told them what she wanted.”
Holt advises families to discuss financials and set realistic expectations. “You hear parents all the time joke about not putting them in a nursing home, so discuss the alternatives,” he says.
As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations. —Zach Holt, CEO of Crater Community Hospice
Some states with high hospice use, like Oregon and Maine, have also passed legislation allowing patients with terminal diseases to self-administer life-ending medication. The Death with Dignity National Center reports that legislation not only eases suffering but brings important conversations about death and dying out of the shadows and into the spotlight. The Virginia Senate passed a “Death with Dignity” bill in February, but members of the House of Delegates chose to table the bill until 2025.
Richmond-area hospice experts recommend that any time a family member has been diagnosed with a terminal illness, they should work with their medical team to prepare a treatment plan as well as an end-of-life plan.
Lastrapes adds that it’s helpful to keep a 10,000-foot view of the patient’s care, understand the trajectory of the prognosis, and set goals early on. While life is filled with unknowns, surrounding yourself with the right people can help ease the pain.
“When you’re born, you have a room full of people to support that baby,” Evans says. “It should be very similar when your life is over. It’s the one thing we’re all going to experience. You should have the ability to surround yourself with your family and your pets and those people who can support you and keep you comfortable.”
Choosing a Hospice Provider
Start your hospice conversation with your health care team and ask about preferred partners.
Medicare patients can enter their ZIP code at medicare.gov to find certified providers in the Richmond area.
Talk to friends, family and neighbors about their experiences with hospice.
Once you narrow down several hospice providers, interview them about specific services, additional resources, areas of specialty, organizational culture, religious affiliation and other differentiating factors that are important to you or your family.
Caring for people with serious illnesses or chronic conditions is one of health care’s most complicated — and important — challenges.
While medicine continues to improve the way we treat diseases such as cancer or heart failure, it doesn’t always do a great job of caring for the things that matter most to patients and their families, such as physical and emotional distress.
And despite their frequent visits to doctors and hospitals, people living with serious medical conditions may still have unaddressed symptoms like pain or fatigue, and often report poor communication about those symptoms with their health care providers.
In other words, medicine is pretty great at treating the disease — but not as good at caring for the whole person.
That’s where palliative care specialists enter the picture, helping people live and feel better throughout the course of a serious illness.
Palliative care is a growing field of medicine that focuses on helping patients and their families cope with the physical and emotional stressors of advancing health problems. There is strong evidence that palliative care not only can improve quality of life for seriously ill patients, but also may reduce avoidable hospital admissions and enable patients to spend more time at home doing what matters most to them.
What is palliative care?
Palliative care focuses on providing people with relief from the symptoms and stressors of serious illnesses, such as cancer, chronic heart or lung disease, dementia, neurologic diseases like Parkinson’s, chronic liver disease, kidney failure, and many others.
Delivered by a specialty-trained team of doctors, nurses, social workers and other clinicians, palliative care provides expertise in symptom management, care coordination and communication, with the goal of improving quality of life for both the patient and their loved ones. Palliative care is appropriate for people at any age, and any stage of a serious illness.
Importantly, palliative care is not the same thing as hospice.
While palliative care is led by clinicians specifically trained in that field, it’s provided in collaboration with other health care providers, including primary care doctors and specialists — and, unlike hospice care, it can be administered at the same time that the patient is receiving curative treatment, and at any stage of serious illness from the time of initial diagnosis.
A person with cancer undergoing chemotherapy, for example, might benefit from palliative care, as would a person with lung disease seeking a lung transplant. In fact, when people facing a serious illness receive palliative care early in their disease and alongside treatment for their underlying condition, evidence demonstrates that it may even prolong survival.
Unfortunately, the historical misunderstanding about palliative care’s association with hospice — and the general lack of awareness about palliative medicine as a specialty, even among providers — means that millions of people who could benefit from palliative care don’t get it.
Worldwide, only about 14% of people who need palliative care currently receive it, according to the World Health Organization.
Where can I receive palliative care?
Palliative care is provided in all settings. To best meet the needs of their patients, palliative care teams see people in the hospital, outpatient clinics, nursing facilities — and even in the comfort of their own homes.
Providing home and community-based palliative care is not only convenient for patients and their families, but it also aims to reduce certain complications of advanced illness that would otherwise require emergency room visits and hospitalizations.
The benefits — patients who feel better, have fewer unnecessary hospitalizations and have more support during stressful times — are attractive to patients, families and insurers alike. As a result, insurance providers such as Medicare are changing the way they reimburse for home-based palliative services, while health systems and other agencies are actively expanding access to palliative care across Pennsylvania and nationwide.
Today, there are more options than ever for home- and community-based palliative care.
How palliative care can help: One patient’s story
Barbara had just retired from a career in management at a local grocery store. She looked forward to the added time retirement would give her to do what mattered most, like spend time with her family and tend to her garden.
Unfortunately, a new cancer diagnosis thwarted these plans, and she was soon spending more time in the chemotherapy suite than with her grandchildren or her prized perennials. Barbara’s pain and fatigue prevented her from being active outside and limited her appetite.
When her primary care provider referred her to palliative care, Barbara was unsure what to expect.
The palliative physician suggested several interventions to help Barbara feel and function better, including medication changes and gentle exercise techniques, and provided additional resources for her family. The palliative care team also helped Barbara understand her care options and encouraged her to speak up about her preferences to her other health care providers and to her loved ones, so that everyone was on the same page about supporting her goals.
In time, these interventions helped lessen Barbara’s symptoms and streamline her care. Throughout her cancer journey, the palliative care team has remained a constant layer of support for Barbara and her family. With close attention to her goals and symptoms, the palliative care team helps Barbara live as well as possible, despite having a serious illness.
If you or a loved one has a serious medical condition, ask your doctor or insurance provider about a referral to palliative care.
Her mum is trying to ask her doctor something, but in recent weeks, she’s lost the ability to speak.
Miki’s mum has motor neurone disease (MND) and her only means of communicating is with a letter board, where she blinks to spell out what she’s trying to say.
She needs staff from her hospital to operate the equipment, but they’re refusing to be involved.
“It really sent a … message that what we were doing was wrong,” Miki says.
Eventually, Miki’s begging reaches the hospital CEO, who grants special permission for an occupational therapist to set up the letter board.
“There were rules that [the occupational therapist] could set my mum up with the equipment, but they were not to be present in the room for any conversations,” Miki says.
And then, letter by letter, Miki’s mum blinks to spell out her request: She wants to die.
Voluntary assisted dying (VAD) has been legal in Victoria since 2019, meaning people like Miki’s mum who are suffering from a degenerative condition can choose to take certain medication to end their life.
But healthcare providers can refuse to facilitate VAD if they object to it on ethical grounds.
This is the situation Miki and her mother found themselves in.
“I was really shocked to learn that a publicly funded hospital could have policies that existed on ideological or religious grounds,” Miki says.
“Someone like my mum, who can’t talk, can’t move, can’t advocate for themselves… is facing just about as many barriers as a person can face. So every little hurdle that’s added to that is just an enormous stress to overcome.”
‘Forbidden to raise the topic’
At her home in the west of Melbourne, Miki stops in the hallway and gazes into a bedroom.
It’s stacked floor to ceiling with boxes — her mum’s entire life — but Miki can’t bear to face it just yet.
Her mum was a dance teacher and later a librarian, but when she started having falls in 2019, she was diagnosed with MND.
Miki’s mother was a dance teacher and later worked as a librarian.
Miki’s mum was living in South Australia at the time, but they were told one of the best places to get care for MND was in Melbourne, at Calvary Bethlehem Hospital.
“We also knew she’d be able to access VAD in Victoria, which she couldn’t in South Australia, so we moved her over,” Miki says.
What they didn’t realise was that Calvary Bethlehem is one of 21 public Catholic hospitals around Australia with a blanket policy against VAD.
Miki noticed right from the first appointment “an undercurrent of nervousness in everyone we spoke to at Calvary Bethlehem — if you mentioned VAD, it was like hitting a brick wall.”
But they didn’t know where else to turn. To Miki, switching hospitals felt like choosing between the best possible care, and the best possible death.
“As we understood it, Calvary Bethlehem was the place that people with MND go. It was never discussed with us that there was an alternative that might be better able to support my mum’s desire to apply for VAD,” Miki says.
Miki had her mum’s possessions remotely packed and moved from South Australia during the pandemic. By the time her mother was ready to apply for VAD, they were both exhausted.
One doctor, speaking on the condition of anonymity, told Background Briefing that referring doctors can’t warn their patients about Calvary Bethlehem’s stance, because raising VAD with a patient is illegal.
Doctors can only answer questions about VAD if the patient raises it first, and many have not yet considered it when they’re first diagnosed and choosing a hospital.
“Patients who are inadvertently admitted to Catholic hospitals may never learn of their rights and as doctors we are not allowed to educate them — the questions must come from them,” the doctor said.
“I am forbidden by law to raise the topic. Therein lies a massive problem.”
The doctor said they’d had to remove patients from Calvary Bethlehem’s “superb service” due to its refusal to be involved in VAD.
In a statement, Calvary Bethlehem confirmed the team caring for Miki’s mother were following its policy of not being involved with VAD.
It said it responds “openly, sensitively and respectfully to anyone expressing a wish to explore VAD” and “would not block a person’s access”.
Miki says her mum’s decline was “swift and devastating”. “On the one side of [Melbourne’s] lockdown she could hug me and on the other she couldn’t.”
Personal views influencing policy
Objection to VAD is also prevalent in the palliative care sector, where Catholic-run organisations are major players.
But objection is not limited to faith-based organisations — many secular public facilities also refuse to be involved.
QUT Professor of end of life law and regulation, Ben White, says the policy for entire institutions is often influenced by the views of individuals in leadership positions.
Professor White interviewed dozens of families in Victoria about accessing VAD.
He says the majority described objection by healthcare facilities, with their loved ones blocked from having VAD doctors or pharmacists visit, or prohibited from taking the medication on site.
Objection was particularly problematic for regional families he interviewed, who “didn’t have the ability to just go to the next institution down the road,” he says.
QUT Professor of end of life law and regulation Ben White.
‘He scolded me’
Like Miki, Julius Pieker had to watch his mother decline during the pandemic.
She had ovarian cancer, and after a bad fall, was sent to Wantirna Palliative Care Unit — a secular public facility servicing Melbourne’s eastern suburbs.
During her stay, she summoned Julius to her bedside and told him she wanted to use VAD. Under the legislation, this is available to anyone expected to die within six months.
“I said to her, look, we’ll support you in whatever you want to do,” he says.
Julius looked around the facility for someone to tell, and spied his mother’s doctor.
But the doctor’s reaction floored Julius.
“He scolded me. And tried to say that I was not to encourage my mum to do this,” Julius says.
“I was distressed by him making that sort of accusation that I would do that, and I told him so.”
Julius says the doctor was silent.
“He didn’t try to console me or say, you know, ‘I didn’t mean to give you the wrong impression’. He was just like stone,” he says.
Legally, there’s no obligation for objecting doctors to refer people like Julius on to a service that might be able to provide more information.
“I was left feeling that I had nowhere to go after I spoke to that one person,” Julius says.
What Julius didn’t realise was that until recently, Wantirna had been transferring patients who requested VAD out of this public facility.
“I didn’t know about the politics of palliative care,” Julius says.
“They have no right to stop people from accessing [VAD], because it’s legal.”
Julius’s mum was transferred back to the public hospital she’d initially come from, where she was able to access the VAD medication to end her life.
Melbourne oncologist, Prasad Cooray, says the transferring of patients out of Wantirna has been an “ongoing problem” for him and his colleagues.
In some instances, patients have been transferred upon requesting a VAD permit — before they even decide whether to go ahead with using the medication.
“[Transferring patients] takes away dignity and adds unnecessary distress to these last moments of their lives,” Dr Cooray says.
Melbourne oncologist Prasad Cooray says the transferring of patients has been an ‘ongoing problem’.
His biggest fear has been that one of his patients could die in the back of an ambulance during a transfer — “a dying patient is dying, unstable,” he says.
Patients can also be distraught on having to move facilities, and feel chastised, he says.
“It’s a judgement that’s passed upon you. How terrible is that — that we are passing a judgement on the dying patient in a place where we need to be infusing humanity and love?”
The other public palliative care centre in Dr Cooray’s catchment is Caritas Christi, a Catholic organisation with limitations around VAD.
The main option left for patients wanting VAD has been the acute medical wards of local hospitals, which Dr Cooray says are “one step down from an emergency department” and “not designed for dying”.
“Palliative care places are … a much more peaceful environment, as homely as you can make it,” Dr Cooray says.
“These institutions exist for the benefit and for serving the patients.
“And I do not understand how it’s been flipped around that it exists to serve the conscientious objections of staff. Those people should … step aside and allow people who do not have objections to carry it out in that place.”
In other instances, patients had been transferred home, where families often felt ill-equipped to provide 24/7 care for their dying loved one.
Dr Cooray said the local health authority, Eastern Health, had been long aware of the situation at its Wantirna Palliative Care Unit.
But last year, Victoria’s VAD Board got involved after a complaint from a patient’s family.
Eastern Health then changed its guidelines to mandate that VAD be accessible at all its sites, and in recent months, Wantirna stopped transferring patients seeking VAD.
When Amy Pickard’s mother died suddenly in 2012, she was understandably grief-stricken. But she also felt frustrated and overwhelmed, since her mother didn’t plan ahead for her death.
“I would have given anything to talk to my mom just one more time, but it wasn’t to hear her tell me she loved me; I needed her to tell me the friggin’ Wi-Fi password!” Pickard says.
Since her mother lived far away, Pickard didn’t know what bills needed to be paid or what to do with her mother’s now-deceased body.
“I just said, can you put her [body] on ice? Because I have no idea what is going on,” Pickard recalls. In an effort to normalize death and create a death-positive movement, Pickard teaches people how to throw a death party and add some humor to the inevitable and often daunting end-of-life duties.
Dealing with uncomfortable death duties
Pickard refers to all of the different decisions that need to be made and tasks that need to be completed after someone dies as “death duties.” She says these duties are “the hellscape of details forced upon a grieving loved one after their person dies.” This includes responsibilities such as cleaning their house and sorting their belongings, making funeral arrangements, settling their finances and closing their estate.
After her horrible experience with her mother’s death duties, Pickard wanted to help others avoid the same issues. “I was preaching the gospel of advanced planning to my friends,” she says. Surprised at how her friends took to the lessons, Pickard thought, “I have a message here. And it’s landing.”
In 2014, she created a long list of questions related to when someone dies. The list was a booklet called Departure File, which she still sells today. She included, “all the minute, everyday things that came up that I had no answer to, like ‘Do you have a storage space?’”
“Good To Go!” death parties are changing the narrative
Pickard realized most people think of death and dying as morbid and creepy, so they don’t like to talk about it. She also knew most people would probably not want to answer the questions in the Departure File, so she decided to create a party where everyone filled out the answers.
“I thought, ‘I’m a good communicator, I’m an extrovert and I have a sense of humor, so why not have a party?’” she says.
During the parties, Pickard tapped into her sense of humor by creating death-themed soundtracks with songs like “Another One Bites the Dust” and “Stairway to Heaven.” She also had everyone bring a potluck dish based on the recipe of a loved one.
She didn’t have a business plan when she started; instead, she learned as she went along and as her business evolved. Her parties are now referred to as “Good To Go!” parties, though guests have also described them as “Death Tupperware Parties” or “Fete du Mort” shindigs.
People who attended the initial parties “were blown away by it—all of us felt a beautiful kind of electricity in the room,” Pickard recalls, noting that no one else was hosting these types of events. “It is unbelievable how important this is, and how in denial our entire society is over the one absolute positive thing that we know with 100% certainty is going to happen,” she says.
Normalizing the death-positive movement
In a bid to overturn this cultural thinking, Pickard considers herself to be part of the death-positive movement—a way of thinking that encourages people to have end-of-life celebrations and speak openly about death, dying and corpses.
The modern-day concept of the death-positive movement dates back to the 1970s, but the death-positive movement was further popularized in 2011 by Caitlin Doughty, a mortician who believes people should change their perceptions about death. On her website, The Order of the Good Death, Doughty says death should be a part of your life. “Accepting that death itself is natural, but the death anxiety and terror of modern culture are not,” Doughty states on her website.
When Pickard’s father died, the experience was opposite that of her mother’s death. Pickard attributes that to the fact that he filled out the Departure File and talked openly with her about advanced planning. When she first created the Departure File, she wanted to help others and didn’t consider how it could one day help her. Like her mother, her father died suddenly. When he was intubated in the hospital, she gave a copy of his Departure File that included his advanced care directive to the staff. Their response was, “No one ever does this. This is amazing.”
Before Pickard’s father passed away, she said to him, “You know that everything is taken care of.” She says the look of peace on his face in response brought her comfort. It was at that moment she understood that advanced planning also brings peace to a person before they die.
“It was such a weird, ironic moment that the company that I created for others actually helped me and helped my grief,” she says. “With [my dad’s] instruction, I felt empowered. I felt I was honoring him.” The directions he provided also eliminated any uncertainty she may have faced making decisions about duties related to his death.
Planning for death is planning your life
Even though “Good To Go!” parties are humorous and lighthearted, there are still times, understandably, when people are grieving. Pickard handles these situations by offering a tissue and trying to help them understand that, “when you plan for your death, it’s actually planning your life.”
She explains that people prepare for natural disasters by stocking up on candles and getting a generator, but they don’t plan for their death. “We spend more time building a burrito than we do thinking about what we want to happen when we die,” she says. Advanced planning is a way of letting people know how you want to be remembered, she adds.
Pickard recently expanded her business to help people declutter their homes while simultaneously creating advanced planning regarding their material things. She refers to this task as legacy organizing.
“I am helping people organize their homes for their death,” she says. She explains that her services are similar to that of a “death concierge.” She says, “I encourage people to clean out their places with their families. And that way, you make new memories. It’s actually fun.”
This lighthearted approach to death and advanced planning underscores Pickard’s mission with “Good To Go!” parties. “I’m not a doctor; I’m not a lawyer. I am just literally a girl that’s lived through grief and wants to help other people get through it too.”
