In recent months, I read a very powerful piece in The New York Times that detailed the last day in the life of President George H. W. Bush. It described how in the last week of the president’s life he had stopped eating and was mostly sleeping.
His longtime friend and colleague, James Baker visited him frequently in his last days, and was there when he passed away. Baker described how, at the end, he held Bush’s hand and rubbed his feet.
The former president died in his home, surrounded by several friends, family members, doctors and a minister. As the end neared, his son George W. Bush, also a former president, who was at his own home in Dallas, Texas, was put on speaker phone to say goodbye.
He told his father that he had been a “wonderful dad” and that he loved him. “I love you too,” Bush told his son. And those were his final words.
Bush’s doctor described how everyone present knelt around the president and placed their hands on him and prayed for him. It was a very graceful and gentle death, accompanied by loved ones who gathered in the intimacy of his home in Houston.
For almost four years now, I have been privileged to visit nursing homes, assisted living facilities and private homes to sing and play music for people in hospice under the title of my role as “Chords of Comfort.” I also make visits as a hospice chaplain.
On some days, my patients are alert and able to converse with me. On others, they lie in bed unable to speak and sometimes sleep.
On such occasions, I sit by their bedside and just keep them company. Sometimes a family member or two is present when I visit.
Several years ago when I arrived to visit a certain patient, I was surprised to find members of her family singing and playing guitar while the patient, who could not speak, moved her head rhythmically back and forth.
One of her youngest grandchildren had flown all the way from San Francisco, Calif. to New Jersey just to sing for her great grandmother. It was obvious that the singing and playing brought great comfort and pleasure to her.
When the family asked me to join in with my guitar, it became clear to me that we all were feeling spiritually uplifted by the beautiful music that we created together.
There is a rabbi who directs a Jewish-end-of-life care/hospice volunteer program. As part of his training program, the rabbi asks the volunteers to reflect on a moment when they were in need of someone to be present for them.
One man related the story of his bicycle accident when a stranger sat silently with him on the curb until the ambulance arrived. Another volunteer described how her grandmother sat knitting in the corner of the hospital’s delivery room throughout her three-day-long labor.
What both of these stories have in common is the power of someone simply being present for another person.
Chaplaincy – spiritual care – is all about accompanying another person while being fully present. It is all about trying to ensure that there will be times during the day when a patient is not left alone and has someone by their side.
Even when someone’s life is transitioning, healing of spirit is possible until the very last breath. It is especially at these times when our very presence can raise their spirits, which not only benefits them, but also us.
Being present and ensuring that no one is left alone is an incredible act of kindness and a supreme act of holiness. In the Jewish faith, it is considered a “mitzvah,” a religious obligation.
I hope that you will consider ways that you can help reduce isolation for those who are alone and provide them with “accompaniment.” Let us continue to find ways to be fully present for members of our own family and for those in the wider community who will benefit from our companionship and just “being there for them.”
Perhaps you may wish to consider committing to one specific act of accompaniment each month that will lift the heart and brighten the spirit of someone else – and probably do the same for us.
I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”
I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.
As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, 19 million Americans will be over 85, all at high risk of losing the ability to care for themselves or dwindling away because of organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)
So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.
My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.
The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know whether she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.
This cannot be right. This cannot be what we want for our parents—or ourselves.
Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.
“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”
For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.
Talking about death
The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination—which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup, you’d have to answer a few basic questions about your wishes for the end of life? What if planning for those days became customary—a discussion of personal preferences—instead of paralyzing?
Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death—and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.
“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”
Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling. “The cultural issue had reasserted itself,” Saul says drily.
It’s hardly surprising that medical personnel would drive this reexamination of our final days. Coombs Lee, who spent 25 years as a nurse and physician’s assistant, considers her current advocacy work a form of atonement for the misery she visited on terminal patients in the past—forcing IV tubes into collapsed veins, cracking open ribs for heart resuscitation.
“I had one elderly patient who I resuscitated in the I.C.U., and he was livid,” she says. “He shook his fist at me, ‘Barbara, don’t you ever do that again!’ We made a deal that the next time it happened we would just keep him comfortable and let him go, and that’s what we did.”
It bears pointing out, however, that many doctors dislike discussing the ultimate question—whether patients should be allowed to choose their moment of death by legally obtaining life-ending medication. Several have told me that the debate over this overshadows more important conversations about how to give meaning to what remains of life. In Europe, the term of art is euthanasia—the practice of injecting patients with life-ending drugs—which remains illegal in the United States. But whatever the method, many physicians would prefer to avoid the entire topic.
While arguments flare around this, Dennis McCullough, a geriatrician in New Hampshire, has noticed a quieter answer taking shape among his own patients. Many are themselves retired doctors and nurses, and they have taken charge of their last days by carefully mulling the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, they focus instead on accepting it. In place of scheduling never-ending doctor’s visits, they concentrate on connecting with others.
McCullough has termed their philosophy “slow medicine,” and his book about it, My Mother, Your Mother, is starting to attract attention around the world.
“If you go to a doctor to get a recommendation for having some procedure, that’s probably what’s going to happen. Doctors are driven by revenue,” he said in an interview. “But many of the things that we can do to older people don’t yield the results we’ve promised—medicine can’t fix everything. ‘Slow medicine’ is being more thoughtful about that and staying away from decisions based on fear.”
This attitude is gaining traction. In November, several hundred physicians plan to gather in Italy to discuss slow medicine (a name lifted from the similarly anti-tech slow food movement), and McCullough’s book is being translated into Korean and Japanese.
“What’s the last gift you’re going to give your family? In a sense, it’s knowing how to die,” he says. “Staying alive is not necessarily the goal.”
Death with dignity
I consider my mother-in-law, a practicing Catholic and right-leaning political moderate, a barometer for this slowly shifting national consciousness. She is in her mid-60s and healthy, but has already written directives specifying that Bach be played at her bedside and perfume scent the air, if her health deteriorates to the point where she cannot say so herself.
Personally, I’m relieved. Unlike my 24-year-old self, I now find it comforting to plan these things, rather than living in fear of them. But I would still be mired in denial were it not for former Washington Gov. Booth Gardner, whom I wrote about in 2008 when he was pushing for a Death with Dignity law and I was a newspaper reporter.
Shaking with Parkinson’s disease, he tried to spark conversation about legalizing physician-assisted aid-in-dying while attending a luncheon in downtown Seattle with a small circle of business friends: “I have a real tough time understanding why people like us, who’ve made tough decisions all their lives—buying, selling, hiring—do not have the right to make such a fundamental decision as this,” Gardner said, referencing his wish to take life-ending medication when his illness becomes unbearable, to gather his family and die when he chooses.
The men sipped their soup. They did not approve. They did not even want to discuss it. Yet that stony opposition—which mirrors the position of the Catholic church, groups representing the disabled, and hospice workers dedicated to maintaining “studied neutrality”—has, ironically, begun to nudge talk of death into the open.
Gardner, to my mind, had articulated the central concern: Wherever you come down on end-of-life decisions, the question is one of control—and who is going to have it over our bodies at the last moments.
Thus far, only Washington and Oregon have passed Death with Dignity laws, though a voter initiative is scheduled for the November election in Massachusetts. In Montana, the courts have ruled that physicians who prescribe life-ending medication for the terminally ill are not subject to homicide statutes; in New Mexico, two doctors have filed a suit challenging prohibitions against “assisting suicide.” And in Hawaii, four doctors willing to prescribe life-ending medication have geared up for a similar fight.
Yet after 15 years of legalized aid-in-dying in Oregon, the biggest news is how seldom people actually invoke this right. Since 1997, fewer than 600 terminal patients have swallowed doctor-prescribed drugs hastening their ends, though 935 had prescriptions written. Did 335 people change their minds at the last minute? Decide in their final days to cling to life as long as possible?
If so, that might be the best thing to come out of Compassion & Choices’ campaign: a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.
My own immediate family ranges in age from 3 to 84, and I envision a dinner in the not-too-distant future when we will gather, talk about how to make my parents’ final journey as meaningful as all that has come before, and raise a glass to the next stage. Maybe at Thanksgiving.
In the dimly lit room, Mark Quinlan struggles to be heard.
His voice box has been silenced by his thyroid cancer. He tries to whisper, but the hum of his oxygen machine drowns out the sound. The voice of the bone-thin 67-year-old barely carries to the edge of his hospice bed.
But Christy Marek is listening.
Marek, an end-of-life assistant called a death doula, leans forward to catch every word. She asks him about funerals, the afterlife and memories of happier times.
“Do you want last rites?” she asks.
The whisper: “I suppose.”
She has been with him for months, in a hospital, transitional care unit and a hospice. Every step of the way, she has guided him through a dark and scary wilderness.
In many cases, death doulas are redefining how people approach death. They are breaking away from traditional generic funerals, and pioneering approaches to grieving, memory and death.
“Death is being reimagined at this moment,” said Anne Murphy, owner of the death-consultation business A Thousand Hands.
In the past, doulas were women working as midwives to help the process of birth. “Death doula” is a term for people who help with the other end of life. They also call themselves celebrants or soul midwives.
“They all do the same thing — companioning for people dying,” said Jane Whitlock, a St. Paul death doula.
The National Doulagivers Institute reports that its training has quadrupled in two years. President Suzanne O’Brien said she has now trained 402 certified doulas in a six-month course. The cost is $997, Twin Cities Pioneer Press reported.
“I just got back from a month of training in Thailand,” O’Brien said in April. “This is needed around the world.”
Doulas-to-be are drawn to a job that that pays up to $100 an hour in Minnesota. The trainers are proliferating, with names like Doulagivers, Lifespan Doulas, Soul Passages and the National End of Life Doula Alliance.
The traveling doula schools are arriving in Minnesota.
One session starting May 31 offers a three-day program by the International End of Life Doula Association for $750. Or you could get training from the Conscious Dying Institute, which is offering three-day classes starting June 22 and September 26, for $2,995 and $1,895, respectively.
The inconsistency makes some uncomfortable.
“I look at the programs where you get certified after a weekend. It is not doing the people you work with justice,” Marek said.
“It is frankly a little bit messy.”
Doulas sometimes overlap the services of a hospice — causing some friction.
“Hospices frankly do not know what to do with the end-of-life doula role,” Marek said.
Susan Marschalk, director of the Minnesota Network of Hospice and Palliative Care, said they do not compete but must learn to work together.
“Doulas are newer, and there is some trepidation about them,” Marschalk said. She said hospices provide medical care and emotional support for dying people.
Doulas are flexible, hired by the hour. They can be employed before or after the dying process begins, helping with funerals and commemorations.
The training for death doulas is sketchy.
It’s a new vocation, with no regulations or standards. With no training whatsoever, anyone can start working as a death doula.
Sometimes they are hired months before a death, and work for months afterward. Some are called at the last minute and may help only in a person’s final hours.
“This is so new. We are all finding our way,” said Marek, of Lakeville, owner of Tending Life at the Threshold.
Being a doula is not a full-time career — yet.
“Right now there are no full-time death doulas,” said doula Whitlock. But she predicts that as baby boomers age, the demand will increase along with the number of deaths.
Doulas seeking full-time work sometimes branch out into related areas — paperwork, aging in place, consulting, or doula services for pets.
“Dying people want to put things in order,” she said. She helped a woman arrange for her ashes to be dropped into the Mississippi River from a pedestrian bridge.
Death doulas encourage doing whatever is meaningful — which can often mean breaking the rules.
For example, one dying man recently requested a wedding and an end-of-life celebration — in the same service. He was engaged, said doula Murphy, and saw the dual-purpose ceremony as meaningful.
What was meaningful at Susan Showalter’s funeral was utterly original.
Showalter, 71, of St. Paul, died in December of diabetes complications. End-of-life adviser Murphy suggested a home vigil, displaying the body for visitors to see.
About 175 mourners were served white wine and Doritos — Showalter’s happy-hour treat.
Respecting an ancient ceremony, they washed the body with washcloths and pans of water. They anointed her with oil, dabbing it on her face and hands.
The group spontaneously sprinkled rose petals to make a pathway between the body and the funeral-home van.
Once the body was gone, they shaped the petals on a table into an outline of her body. Where her feet had been, someone placed hockey socks — which she wore when her feet were cold.
The personal touches enriched the process, said her husband, David.
“This allowed us to be in charge,” he said. “We were participants, not just observers.”
“I swear at least 20 people thanked me for such a wonderful way to say goodbye.”
At other times, death doulas help celebrate the lives of the deceased — before and after they die.
On May 10, Marek hovered at the bedside of cancer victim Quinlan in Our Lady of Peace hospice in St. Paul.
She reminded him of the impact he had on his students, from 40 years of teaching at Centennial High School in Circle Pines.
One of them — Chris Roskowinski — flew from his home in Sherman Oaks, California, when he learned that Quinlan was dying.
The night before, he was taken to the opening-night play at the high school, which he had helped direct until the cancer left him incapacitated. The cast and the audience honored Quinlan — which made the occasion both happy and sad.
“Tell me, did that make it easier for you?” Marek asked. “Harder?”
After a pause, a raspy whisper rose from the bed: “Easier.” The word seemed to hang in the air.
At his bedside, Roskowinski could barely hear Quinlan speak, but nodded appreciatively.
Most people know what a birth doula is, but not many have heard of an end of life doula.
Sometimes we’re called death doulas, death midwives, end of life companions or soul midwives. While a birth doula provides support and guidance to mothers at the start of life, an end of life doula provides practical and emotional support at life’s end.
Often I’m called in at diagnosis when there’s an element of disbelief and panic but sometimes it’s at the last minute when someone is actively dying. Their needs can change, too – someone who doesn’t require much support in the beginning can need a lot more assistance as their illness progresses.
No two days are ever the same. One day I might be going to hospital appointments with someone I’m working with or advocating on their behalf with their medical team. Another day I might be helping children say goodbye to their mum or dad. Some days I’ll be attending funerals.
There’s a very practical side to my job. I might help someone write an Advance Directive, a will or a do not resuscitate order (DNR), and help anyone thinking about appointing a lasting power of attorney.
Disbelief often accompanies a life-limiting diagnosis. Often, in the stiflingly small consultant’s office, any words spoken after a devastating prognosis fall onto ears that are powerless to hear any more. I take extensive notes in consultants’ appointments because I know my clients will be too distressed to process it all.
One client I worked with had an amazing medical team, an incredibly supportive and present family and a big group of friends.
She contacted me because she needed someone to offload to without making her amazing support network feel inadequate or unappreciated. She wanted someone she didn’t feel she had to protect from the harsh realities of her illness and her feelings about it.
They never knew she’d sought extra help. I only found out she’d died from an online obituary.
Yet some people don’t have family and friends who can help them, or who can’t take time off from jobs that pay the bills.
Illness can also drive our friends and family away. These losses can be isolating and frightening at a time when you most need company and reassurance.
At 17, I found myself standing at the graveside of one of my nearest and dearest friends. Despite being ill for a long time, we didn’t know that he’d been diagnosed with an incurable cancer.
He knew he was going to die but didn’t feel able to tell us any of us. There was a stark clarity to sitting in that packed congregation knowing he was barely out of their teens. His death shaped my life and his silence made me decide that I wanted to help people at the end of their lives.
When I first meet people we’ll talk about what a good life looks like to them and what they would consider to be intolerable.
They’ll set out boundaries around what they consider will be the limit of their suffering, and as their illness progresses, those boundaries almost always shift.
People have described their illness as being like a huge magnifying glass, augmenting what matters most and sometimes allowing them to let go of things they realise don’t really matter.
Others have described to me the lucidity that can come with a short prognosis, how things taste and look different when you know you’ll only ever get to eat or see them a few more times. Of course, this isn’t always the case, and depression can go hand in hand with being physically unwell.
With some clients it’s more important to acknowledge just how sh*t the situation is. There’s no fix for end of life. There’s no cure. Sometimes all someone needs you to do is acknowledge how unfair what’s happening is. The most fundamental part of my job is listening: to really hear what life is like for someone, to bear witness to their pain, to sit with them in their darkest moments and to be there.
That said, I am always amazed at how people are able to find humour in the darkest of situations.
I once helped a young woman say goodbye to her father. She hadn’t been able to get to see him before he died and I accompanied her to the funeral directors.
She was distraught. She’d told me that he had always been a joker and while his lame jokes drove her to distraction during his life, they would be one of the things she’d miss most.
She started crying so I handed her a box of tissues, which she dropped. She then bent down to get it, stood up too soon and knocked his coffin, rocking him like a dingy on a rough sea. I looked up in concerned horror to find her giggling hysterically. She said he’d have loved the sitcom silliness of the moment and felt they’d shared one last laugh.
That people can smile despite, in spite, of all they are facing, that family and friends can demonstrate and show a love that’s pure and deep, is humbling to bear witness to.
I don’t really believe in the idea of a ‘good death’. Describing death as ‘good’ makes me feel I’m doing a disservice to life, to loss and to grief. My job is about helping people live a good life and that ‘living’ includes dying.
The dying, we all hope, will be as gentle and as painless as possible but it’s the living of a good life right up until your last breath, that what it’s all about.
Talk to your children about life and death, dying and grief – it is as important as talking to our children about sex and relationships. And do it now. It’s so much easier to have those conversations when everyone is well. Every adult should write a will, we should all have an Advance Directive, appoint a lasting power of attorney and sign a DNR.
I have regular supervision and therapy to help me do this job. I take time out, and I would prefer to work with fewer people and do an excellent job than take on too much and buckle under the emotional weight.
Hanging out with my three daughters and walking our silly one-eyed dog helps me keep my emotions in check. Gelato helps a lot too.
Death is still a touchy subject that many are uncomfortable discussing, and our tendency to avoid the topic leaves people uninformed and unwilling to seek out answers about death and dying.
A new report by the Academy of Medical Sciences highlights just how unwilling we are to breach the topic of death and how uninformed the general public is about the final hours of a person’s life.
The report is part of a national UK campaign that hopes to raise awareness around death and ensure that health professionals understand the priorities and concerns of the public when it comes to end of life care.
The Academy of Medical Sciences partnered with Ipsos MORI, a UK market research company, to survey 966 adults aged 18 and older.
Surprisingly only 612 of the participants opted to answer the survey which was conducted through face to face interviews.
Six out of ten of the participants admitted to knowing very little about the final hours of life, even though one out of every two people reported being present during the death of someone else.
“Not knowing what may happen to a loved one as they die can exacerbate fears at the hardest times of our life,” said Sir Robert Lechler, the President of the Academy of Medical Sciences. “It may also mean that people struggle to think clearly about how best to fulfil the wishes of a dying family member or friend, let alone know what to ask doctors and nurses.”
The survey also asked participants about how they learned about death and where they got their information.
The majority of people reported getting information from family and friends or observing someone’s last moments.
20 percent of the participants said there were just as likely to get information from a documentary as they were a medical professional, and movies and TV were ranked among the top five sources of information.
“TV and films rarely ever depict ‘normal’ deaths,” said Dame Lesley Fallowfield, a Professor of Psycho-Oncology at the University of Sussex. “For many individuals, death is a gentle, peaceful and pain-free event. Although grieving the loss of loved ones can be a difficult process, some people do speak about their loved one’s death as having been a positive experience. We need to demystify death and talk about it more.”
Some of the biggest concerns people have about death are that their loved ones might be in pain or frightened when they die.
Not only can talking about death help alleviate some of these concerns, but by being informed about the death process and end of life care, you can also empower yourself and your loved ones.
“Many people don’t know much about what palliative or hospice care involves, and some people worry that starting conversations about end of life care might hasten death,” said Dr. Katherine Sleeman, an NIHR Clinician Scientist. “In fact, the opposite may be true – research shows the earlier people access specialist palliative care the better their quality of life, and some studies have shown that people who receive early specialist palliative care actually live longer.”
Gerda Saunders, an author and former gender studies professor in Salt Lake City, Utah, was diagnosed with microvascular dementia in 2010 at age 60.
The time leading up to diagnosis and immediately after can be a whirlwind of emotions and confusion. But one thing, said Saunders, helped put her at ease: putting a plan in place for end-of-life care.
Saunders has chosen to pursue physician-assisted death when the time comes. “Preparation for the uncertain future is the most calming thing I’ve ever done,” she recently told Being Patient in an interview.
Saunders’ approach to end-of-life care is becoming more popular and accepted amongst people with a high risk of Alzheimer’s, a new study published in JAMA Neurology found. While we still can’t predict who will get dementia, there are several biomarkers that indicate a heightened risk for the disease. Researchers at the University of Pennsylvania interviewed people with one of these biomarkers, beta-amyloid, about their attitudes toward physician-assisted death once they knew their brains contained higher levels of the protein, which forms into plaques that destroy neurons in the brains of Alzheimer’s patients.
Of the 47 people interviewed, one in five said they would be interested in pursuing physician-assisted suicide if they were diagnosed with dementia and it progressed to the point of suffering or burdening others.
Physician-assisted suicide is legal in eight places in the U.S.—California, Colorado, Hawaii, Vermont, Washington, New Jersey, Montana and Washington, D.C.—but excludes dementia patients because states require the patient be of sound mind and have less than six months to live. Because the last stages of dementia can stretch out for much longer than six months, people with Alzheimer’s and other dementias do not qualify for “death with dignity” laws.
Most Americans support “death with dignity” laws, according to a 2018 Gallup poll that found 72 percent of people agreed that doctors should be able to assist a patient with a terminal illness in dying at their request. But the laws have always excluded patients with degenerative brain diseases who are deemed unable to make decisions for themselves.
Dementia patients can put advance directives into place, instructing hospital staff not to put extreme measures like feeding tubes into place. But those measures are not legally or ethically binding for medical staff.
Once she meets a set of criteria she has set for herself to determine quality of life, said Saunders, she will likely travel to Europe for physician-assisted death. She plans to carry it out herself and video it in order to avoid putting her husband, Peter, in legal jeopardy.
“We are managing it with all the intellect that we have and that is the best our family can do,” said Saunders, who has the support of her children and also promised to do the same for her husband if he meets certain criteria for quality of life before she does.
“I’ve put down a number of checkpoints: Do I appear or act happy for more hours in the day than I appear or act unhappy? Am I scared of people or my grandchildren or do I scare them? Do I consume more hours of care per day than I live on my own?”
It’s not always easy for family members to come around to the idea of a physician-assisted death—but for a patient who feels control has been snatched away, it can be a comfort. “It’s the hardest thing in his life to promise me that,” said Saunders of her husband’s commitment, “but he also asks it of me. My children and my family have given me an enormous gift in that promise.”
Anne Brescia sat beside her only child, Anthony, as he lay unconscious in a hospital bed at age 16. Just a few months before, he was competing in a swim meet; now cancer was destroying his brain. Brescia couldn’t save her son. But she was determined to bring him home.
Anthony Gabriel Brescia-Connell was not conscious for his voyage from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. He may not have heard the parting blessings before a doctor turned off his portable ventilator and let him die naturally.
But having the choice to take Anthony home, away from the beeping hospital monitors, “meant the world to me,” his mother said.
Anthony’s journey was made possible through swift and unconventional efforts by the hospital staff, including a critical care transport team accustomed to rushing kids to the hospital to save their lives, not taking them home to die.
The experience galvanized Harriett Nelson, a nurse on that team who helped arrange the trip. It inspired her to conduct pioneering research on and advocate for “pediatric palliative transport” — a rare but growing practice that aims to give families choice, control and comfort at the end of life.
Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.
It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.
These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.
At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.
These trips, which can cost thousands of dollars, are typically offered free to families, paid for by hospitals or charities. Most children are taken home, where they transition to receiving care from hospice staff. Some go instead to hospice facilities.
Megan Thorvilson, a pediatrician and palliative care specialist at Mayo, said palliative transport aims to address a gap between families’ preference and reality.
Most parents of terminally ill children would prefer that their child die at home, but most of these children die in the hospital, most commonly in the intensive care unit. Most pediatric ICU deaths happen in a controlled way, following the removal of life support, she said. That means there may be time to move the child to an alternative location to honor a family’s wishes.
Transporting children on life support is risky. At a palliative care conference, a nurse from Children’s Hospital of Philadelphia described the difficulties staff faced in trying to fly a 10-year-old girl home to Michigan. After she was rolled on her side several times to be transferred between vehicles, the child died before the plane could take off.
And dying at home is not what every family wants.
“We do sometimes overly romanticize the death at home,” Thorvilson acknowledged. Some parents would much rather have a child die in the hospital, with familiar nurses at the bedside for medical and emotional support. Some would rather keep this traumatic experience away from where they live.
Brescia, however, said she couldn’t bear to return home without her son.
A biologist who used to run an electron microscopy lab, Brescia wasn’t sure whether she and her husband, Brian Connell, would ever have children. Fertility treatments didn’t work. But on June 23, 1994, seven days before Brescia turned 44, she gave birth to a baby boy.
“Anthony is the love of my life,” said Brescia, who is now 68. “The OB/GYN put him on my chest and I really thought that my heart was going to burst.”
The mother-son bond was especially close: Brescia home-schooled her son for most of his life. Anthony grew to be 6 feet tall, full of curiosity. He loved identifying mushrooms, studied Arabic and oceanography, and aspired to go to MIT. He was an avid swimmer, competing on a team in Belmont, Mass.
One day in late 2010, while racing the backstroke, he became disoriented in the pool and was disqualified.
A neurologist prescribed rest. But over the next two weeks, Anthony grew only more tired and began to lose his balance. On Dec. 20, he was taken to Boston Children’s Hospital and diagnosed with a brain tumor.
The disease “came out of nowhere,” Brescia recalled. “He went from looking incredibly healthy and swimming like a healthy kid” to living at the hospital. At his bedside, she told him she’d bring him home to celebrate Christmas and eat stuffed shells.
His condition deteriorated quickly. The tumor could not be surgically removed. Anthony pushed through radiation and chemotherapy with the hope of going home, but the treatments failed. By late February 2011, the tumor began pressing on his brain stem, and fluid was building up in his brain.
Anthony was unconscious, relying on a ventilator to breathe. Brescia connected with the hospital’s palliative care team.
“I want to bring him home tomorrow,” Brescia told staff.
“I was scared to death he was going to have another incident,” she recalled. “I didn’t want them to do any more invasive procedures to reduce the pressure on his brain.”
Staff from the ICU, palliative care and transport teams scrambled to honor her request. The critical care transport team arranged for the use of its ambulance, a mobile ICU the size of a small bus.
The night before the trip, Brescia said goodbye in the privacy of Anthony’s hospital room.
“I don’t want to lose you,” she told him, holding his hands. “I’m going to let go. I want you to go where you need to be.”
On March 3, 2011, Brescia and her husband boarded the bus along with Anthony, a chaplain, two doctors, Nelson and a nurse from the ICU. They rode 10 miles to the family’s home, where Anthony was laid on a hospital bed in his living room, surrounded by his stuffed animals, on his favorite flannel sheets.
A pastor held a service for Anthony, and close family gathered to say goodbye. Then Brescia signaled for a doctor to disconnect the ventilator.
Anthony seemed to be at peace, Brescia said. After he died, she climbed into the bed with her son and held onto him for a while.
The death was still traumatic. But “it was really a gift to bring him home,” she said. “It was a significant act of compassion and kindness and love on the part of the Children’s staff.”
After Brescia’s experience, Nelson was inspired to offer the choice to more families.
First, she interviewed Brescia and other parents about whether palliative transport had a positive effect. All nine parents said it had. One family described holding a celebration when they brought their newborn baby home, even though he was about to die. They took family photos and used the nursery they had set up, establishing a brief sense of normalcy for four days before he died.
In her 14 years on Boston Children’s critical transport team, Nelson has found that parents benefit from palliative transport for various reasons: At home, they’re away from the noise of the hospital. They have control over who can visit. They feel more comfortable. And they don’t feel rushed after their child dies.
Nelson created a protocol that allows the hospital to offer palliative transport in a more routine way. Now, when children come to any of the hospital’s four ICUs, Nelson said, “we have the power to say, ‘You have a choice when it comes to the end of life.’ ”
The practice appears to be spreading.
After Lindsay Ragsdale, the physician who is director of the palliative care team at Kentucky Children’s Hospital in Lexington, presented her protocol for palliative transport at a conference last year, staff from 20 hospitals asked her to share her checklist, she said.
Mayo’s Thorvilson, who has worked closely on a half-dozen palliative transports, said it’s possible these last-minute trips from ICU to home could be avoided by earlier referrals to hospice, which might get kids home sooner. But when children with complex illnesses get sick, she said, “sometimes it’s hard to know whether this is just another bump in the road, or whether this is the natural end of the child’s life.”
“There’s something really unique about a child dying,” she said. “Everyone’s heart breaks, and we want to be able to do all that we can to be able to support the family in the midst of the tragedy.”
Eight years after Anthony’s death, his bedroom remains untouched, his socks still folded in his top drawer, swimming trophies on the cabinet, slippers under his chair. Pictures of him adorn every room in the house — on the fridge, the kitchen table, the living room stereo.
Looking through photos one recent morning of her son fishing and blowing out birthday candles, Brescia struggled to hold back tears.
“I couldn’t cure him,” she said. “I failed to protect him from a tumor — that’s how you feel. They did all they could. It wasn’t enough. Bringing him home was the best I could do.”