In this intimate portrait, Philip Gould wrestles with the meaning, and unexpected ecstasy, of impending death
Philip Gould was diagnosed with cancer of the oesophagus in 2008, and in the summer of 2011 he was given three months to live. Filmed during the last two weeks of his life, this intimate portrait reveals Gould’s quest to find meaning in what he called ‘the death zone’.
Gould believed that for the terminally ill and those close to them, there can be moments of joy, resolution and inspiration just as intense as those of fear, discomfort and sadness.
‘I am not redefining death, I am offering another way to perceive dying. I have been offered an opportunity to live every moment until there are no more moments for me to live and for that I will be eternally grateful.’
Dr. Bob Saylor sits slumped in a wheelchair waiting for me outside Mercy’s Cancer Center.
His wife of 46 years, Marcie, stands behind the chair. She seems to be slumping, too, as if punched in the gut.
Bob, 64, has brain cancer. He is dying.
The plan was to interview him for about 90 minutes as he received chemotherapy. But he and Marcie have just been told his white-blood-cell count is too low. His fragile body can not handle the rigors of chemotherapy.
I ask if we can still do the interview. His voice is a whisper — sure. I wheel him into the small chapel in the cancer center.
I want to establish a starting point for our conversation. I don’t want to presume. So I ask him: Do you believe you are at the end of your life?
“Yes, I do. Do I see myself dying tonight? No. Would I be surprised if I did? No, I would not be.”
Bob is a nephrologist — a kidney specialist. But about10 years ago he went back to school for a master’s degree in bioethics. For the past several years he has been the director of ethics for Mercy in Springfield.
During this time he has worked with doctors, nurses, patients and their families. He has explored the big questions of life and death and tried to determine — case by case — when medical intervention should cease, when you simply let things be.
“Just because we can intervene as doctors does not always mean we should,” he says.
Now, as cancer takes hold of him, he is the patient. He is the one who must choose how to live his remaining days.
The deadliest cancer
In November, he was betrayed by his left hand. It stopped working. He thought it was carpal tunnel syndrome.
It wasn’t. It was a glioblastoma multiforme brain tumor the size of a small fist. Sadly, the fist has opened and spread its malignant fingers.
Weeks later, he was in Houston being prepped for brain surgery at the University of Texas M.D. Anderson Cancer Center.
The nurse practitioner looked at him and said: “If I were you, I would go home and get my affairs in order.”
In the chapel, he tells me, “That’s not how we do things at Mercy.”
The surgeon removed 92 to 95 percent of the tumor, which is good, Saylor says. He would undergo chemo and radiation to try to get the rest.
Once back in Springfield, Saylor added a new, different treatment — a supplement to the chemo and radiation.
It was a non-invasive procedure called Optune. Electrodes were placed on his scalp. They sent wave-like electrical fields into his brain to prevent the cancer cells from multiplying.
The initial results offered hope. Mercy issued a press release. The News-Leader ran a story — “Mercy doc tries new tumor-zapping treatment for brain cancer.”
Then the tumor came back.
“We can’t say it failed,” Bob says. “It is not doing what we thought it was going to do.”
“Well, I guess you’d say …
What can make me feel this way? My girl. Talkin’ ’bout my girl.”
Bob Saylor and Marcelene McMartin were 14 when they met at East High School in Sioux City, Iowa. They married at 18.
The song of their life together is “My Girl,” by the Temptations. Their boat, docked at Table Rock Lake, is “My Girl II.”
He plays that song every time they leave the dock.
“She has been my pillar of faith,” Bob says of his wife. “She has been my caregiver. She is my wife. She has kind of been my everything.”
Although he is ready to die, he clings to this good life of rewarding work, three brothers, four children and seven grandchildren.
“I still feel I have so much to teach people,” he says. “I have physicians coming down the hallway to discuss cases, to talk about things.”
He blames no one and no thing for his cancer.
“I never said to myself, ‘Why me? Why is this happening to me?’ I guess I have never been that way. What is going to happen is going to happen.”
He has a medical directive that gives Marcie oversight of his care. He will not tell me what it says. He does not want to unduly influence anyone else’s decision of what they should do. That decision is personal. It is based on the narrative of one’s own life.
But he does offer this: “I am far more concerned about quality of life than quantity of life.”
SOGI task force
I first met Bob at Brentwood Christian Church, where we attend. He sought me out to discuss our coverage of the community debate on the Sexual Orientation and Gender Identity ordinance.
This was before the ordinance was repealed in April. Bob was on the SOGI task force. He supported the law.
“Our job as a community and as a government is not to legislate morals,” he tells me. “It is to protect people from harm.”
The issue of protecting people based on their sexual orientation was important to him in large part because years ago he treated AIDS patients while in the Army at Fort Sam Houston.
Later, he was one of the few physicians who treated AIDS patients in the 1980s in Sioux City. And he treated them in Springfield, at Mercy, as well.
Bob served on the task force with others, including Dick Hardy, a former president of the Assemblies of God Central Bible College, which has since ceased operation. Their views on social issues — including SOGI — are as different as the music of Black Sabbath and, let’s say, the Temptations.
The two men discovered they both attended East High School in Sioux City. They did not know each other in high school. Hardy is 61.
They met for lunch. Hardy showed up in his high school letter sweater.
“We talked about life and friendships,” Hardy says.
They understood each other better; they respected each other; but continued to disagree.
“A friendship and a relationship are far more important than any task force that comes and goes,” Hardy says. “A friendship is from start to finish.”
Hardy calls Bob regularly.
“He will just start out in prayer,” Bob says. “They are beautiful prayers. He is a wonderful man. Yes, we have completely different social ideas. But he cares not about that. He cares about me as a person.”
The hopes of others
If anything, Bob is a pragmatist. As such, when he was first diagnosed he was unsure how to respond to those who said they prayed for him.
“I’m not sure if their prayers are going to matter in terms of whether I live or die — but it helps them,” he says. “My oldest son, Rob, has told me that when people pray for me it means they care about me. And if I ask people not to pray for me I take away their hope. I leave them only with despair. And I don’t want to do that.”
I ask Bob if he believes in an after-life.
“Do I want to? Yeah, I want to. Everybody wants to. I guess I do. I suppose I do. … I am not sure what life is before we are born or after we die. I guess that is as existential as you can get.”
I ask if he is in pain. He is not.
What is your greatest concern?
“Losing my cognitive ability is my greatest fear of all,” he says.
“Your business is your mind. If I can’t do what I want to do or am trained to do, it would be very difficult for me. Very, very difficult.”
He has, thus far, kept his sharp mind and occasionally sharp tongue.
“Some people think that during my brain surgery they should have taken out a little more of my sarcasm,” he says.
Bob can no longer walk on his own. His left hand still does not function. Yet he writes extensively on the website Caring Bridge about the loves of his life: his wife, his brothers, his parents, his co-workers, his in-laws, his pastors.
He will not pen good-bye letters to his four children. He doesn’t want to tip the scale of memory to his final days.
He and his father, who is deceased, shared a love of poet Robert Frost, and in particular the poem “Stopping by Woods on a Snowy Evening.” It is a poem about the inevitability of death.
A few months ago, Bob dreamt of his father reciting this poem to him in his baritone voice. Bob believes the dream has meaning — that his life will continue to have value until it ends. The closing stanza is:
In fact, we can’t afford not to have this conversation. According to the National Institute of Health, 5 percent of the most seriously ill Americans account for more than 50 percent of health care spending, with most costs incurred in the last year of life in hospital settings. Economists call this a “cure at all cost” attitude. And in the next 25 years, longer life spans and the aging of baby boomers are expected to double the number of Americans 65 years or older, to about 72 million.
What if the most promising way to fix the system is to actually do less for the dying?
That’s what the not-for-profit Zen Hospice Project has been trying to prove through a fascinating, small-scale experiment in San Francisco’s Hayes Valley neighborhood.
The project, which had its origins in the San Francisco Zen Center in 1987, takes the typical hospice approach of caring, rather than curing, and puts an East Asian sensibility on it. In line with Zen Buddhist philosophy, it trains its volunteers, nurses and even cooks to care mindfully. That might mean sitting in meditative silence at the bedside of someone who is dying. Or focusing on the senses as the most direct connection to the present moment of life — cooking a fragrant meal with fresh ingredients, giving a tender hand massage, singing a favorite song.
For someone who is dying, the past can be too complicated to contemplate and the future is jarringly unknown. Focusing on the present, Zen Hospice Project believes, is where the potential for living most meaningfully — even while dying — exists.
Walk through the front door of the Guest House, as the project’s rambling Victorian home is known, and smell the strong coffee brewing or the homemade chocolate cookies cooling in the kitchen. The cookies aren’t just a nicety. According to Dr. B.J. Miller, the organization’s executive director, piquing the senses is a key strategy to dying well. “No future necessary when you’re in the moment,” he says.
Head up the creaky stairs, and you’ll meet Katherine Nigel, 99 years old, who sits in a big, plush armchair wrapped in a quilt she made. Next to her is a portable keyboard with sheet music propped on it. “I don’t like an audience,” Nigel informs me when I ask how often she plays.
She admits that she painted many of the broad-stroked portraits that hang on the walls and lets me thumb through a book that her daughter made of her bright-hued crochet handiwork; no dumpy browns or washed out greens for this Renaissance woman.
When Jolene Scarella, the head of nursing at Zen Hospice Project, first met Nigel at a traditional assisted living facility, she was in a very different state. When she wasn’t sleeping, she was hallucinating and in severe, hunger-obliterating pain. The assisted living staff had chalked up her discomfort to the inevitable scourge of dying.
But upon moving to the Guest House, Nigel seemed to come back to life (not to be confused with not dying; she’s still doing that). Scarella figured out that Nigel’s hallucinations were being caused by a pain medication, and switched her regimen. Scarella also learned that Nigel was an artist of many trades, and slowly figured out how to re-introduce arts into her life as they managed her arthritic aches. (Nigel isn’t the only artist in the house; many guests do some kind of artwork in their final days, volunteer musicians come through, and there is an artist-in-residence program.)
In the United States, according to the National Hospice and Palliative Care Organization, 44.6 percent of all deaths now take place under the care of a hospice program. People are technically “hospice eligible” when their health care provider determines that they are likely to die in six months, whether from a terminal condition or simply “a failure to thrive,” the technical term for complications because of old age.
But researchers have found that 40 percent of those receiving hospice care have been admitted after a stay in an intensive-care unit, meaning they will spend only a few days in palliative care before dying — not enough time to take full advantage of the technique’s soothing possibilities.
In contrast with the national figures, the average stay at the Guest House is three weeks.
Popular belief has long favored dying at home, but that experience can be overwhelming for the people who love the terminal patient. Caring for him or her can be far more challenging than many people anticipate, especially if the one doing the lion’s share of the caring is elderly or sick as well. Too often, family members and friends are left managing the special equipment and medication regimens rather than actually being with their loved one.
Beyond that, many people who technically die at home have still spent many of their final moments in hospitals. One recent study found that people typically moved from one care setting to another three times or more in the last 90 days of life, with 14 percent of them facing a move in the last three days.
In the Zen Hospice model, those final three months are a precious window of time, when people with a terminal condition shouldn’t be chasing more time, but reveling in what their remaining time can offer — for example, the sound of a favorite Yiddish tune, or the wetness of a beloved dog’s kiss, or even the feeling of smoke filling their lungs. Yes, residents are allowed to smoke — outdoors — if they wish.
The common threads in this approach are more sensory experience, and less spending. It costs the Zen Hospice Project about $750 a day to care for a resident. If that same patient were in a hospital, he or she would likely incur at least five times that much expense.
Historically, neither private health insurance nor Medicare covers the cost of residential hospice care. One result is that when people don’t have a place to go or a care plan that’s realistic for their situation, they languish in their hospital bed, taking up a resource that the hospital cannot be reimbursed for.
Unlike home hospice services, residential hospice costs are not covered by Medicare or other insurance programs. And while reimbursement from long-term care insurance is possible, it is rare and riddled with restrictions
In reaction to those realities, the rate for room and board at the Guest House is based on a sliding scale and an evaluation by the Zen Hospice Project’s admissions team.
The Guest House has a team of nurses who cover shifts 24 hours a day, but the entire orientation is around as little intervention — and as much relationship and pleasure — as possible. Research supports this approach: One study, funded by the National Institute of Mental Health and the National Cancer Institute, found that among 627 patients with advanced cancer, more frank conversations with health care providers and fewer medical interventions coincided with reports of better experiences of their final days.
The Zen Hospice Project is small — there are only six beds in the house, three of them funded by the University of California San Francisco Medical Center (which the project says saves it hundreds of thousands of dollars per bed, per year). But the project also collaborates with Laguna Honda Hospital in San Francisco; its hospice ward houses up to 60 people in a communal, pleasure-centered way. Both places draw on the more than 100 volunteers that Zen Hospice Project has trained over the years.
Volunteers serve one five-hour shift a week (there are three shifts a day), with one hour of overlap between shifts, providing time for group meetings that include 10 minutes of meditation, followed by check-ins. Those wrapping up their shifts reflect on how everything went, and those coming in are told to openly share their current state of mind.
What might seem beside the point is actually crucial when being with “residents,” as the patients are called, explained Roy Remer, the Director of Guest House Facility and Volunteer Programs. “We train our volunteers to cultivate awareness. That means slowing down and creating a heightened sensitivity to everything the residents might be experiencing, but it also means being aware of your own emotional state as you enter a room.”
Many people who volunteer in traditional hospices, according to Remer, can come with an unspoken expectation. Some have romantic notions about the kinds of bonds they’re going to form with dying people, the kind of wisdom they might glean. Some are trying to “correct” regrets about not spending enough time with their own family members as they died. All of that can make the interaction more about the volunteer than about the person dying. Remer believes that good training in mindfulness can help people focus instead on the present moment, and on the person in the bed.
Zen Hospice Project is aimed at serving those with just six months to live (though there is no official maximum).
But here’s the rub: They pay such scrupulous attention to the senses that keep people awake and engaged with the last moments of their lives, that they often end up having more of them. Take Nigel: She has now been a resident for five months. “They treat me too nice here,” she tells me, deadpan.
“Essentially we’re exposing another gap in the system,” Scarella explains. “There just aren’t a lot of places that are built for someone like Katherine — who is dying, but is actually thriving. Where do we send her next?” A skilled nursing facility would be ideal, but there is a shortage of those, too, and it would be hard to find one that would prioritize Nigel’s artistry in the same way.
That’s why the project’s goal is not to increase the number of beds at the Guest House or to buy more houses, but to spread the idea of dying in this way. To that end, Zen Hospice Project is working with a design firm, IDEO, to gestate “a kind of movement,” according to Miller, to rethink the entire ecosystem that currently serves someone like Nigel in her final months. “We’re shifting from a disease-centered to a person-centered model in health care,” he says. “If seen through, this shift would revolutionize how care is delivered and how illness and suffering and dying are experienced.”
For those who do die at Zen Hospice Project (the whole point, of course), the send-off prioritizes the senses as much as the months that led up to it. The body is brought outside to the maple tree on the back porch and sprinkled with rose petals before a crowd of those who care, from the doctor to the plumber. People say a few words if they feel moved.
Or they just sit in silence for a few minutes — a sacred pause before life marches on.
Jewish hospice chaplains confront the emotional and medical complexities of death and dying every day, but Holocaust survivors present special challenges.
Rabbi E.B. “Bunny” Freedman, director of the Jewish Hospice and Chaplaincy Network, said that chaplains are increasingly being called on to provide spiritual support to survivors and their families.
“There are a lot of complex issues,” said Freedman, who has worked in end of life chaplaincy for 23 years. “One of them is making the decision of unhooking hydration – much more complex for a Holocaust family. The idea of not providing nutrition is crossing a sacred or not understood emotional line.”
Survivor guilt and mixed feelings at the prospect that they may “meet their relatives on the other side” commonly surface, he said.
Rabbi Charles Rudansky, director of Jewish clinical services at Metropolitan Jewish Health System’s hospice in New York, reported similar experiences with Holocaust survivors he had counseled.
“Last time they saw their loved ones was hellish, hellish, hellish, and now they’re crossing that bridge,” said Rudansky.
Some Holocaust survivors are apprehensive at that prospect, he said, while others are “uplifted.” A usually talkative person may fall silent, while a quiet person may suddenly have a lot to say.
“I’ve been called in by Holocaust survivors who only want to speak with me so some human ears will have heard their plight,” said Freedman.
Jan Kellough, a counselor with Sivitz Jewish Hospice and Palliative Care in Pittsburgh, said she encourages, but never pushes, survivors to share their stories. While it can be therapeutic for some survivors to talk about the Holocaust, she said, it is problematic for others.
For some survivors, “there’s an attitude of not wanting to give up, there’s a strong will to fight and survive,” said Kellough.
Children and grandchildren of survivors can also struggle to cope with their loved ones’ terminal illness, said Rudansky.
He said such people tell the hospice staff, “’My grandfather, my father survived Auschwitz. You can’t tell me they can’t survive this!’ They have great difficulty in wrapping their heads around this is different — this is nature.”
That difficulty can be compounded by the fact that children of survivors may not have had much contact with death in their lives, said Rabbi David Rose, a hospice chaplain with the Jewish Social Service Agency in Rockville, Maryland.
Because so many of their family members were wiped out in the Holocaust, children of survivors may be less likely to have experienced the death of a grandparent or aunt or uncle.
“That’s one of the benefits of hospice. We work with them and their families to help them accept their diagnosis,” said Kellough.
Hospice offers families pre-bereavement counseling, 13-months of aftercare and access to preferred clergy.
Special sensitivity is paid to spouses who are also survivors.
“Survivor couples, particularly if they met before the war or just after the war are generally exceptionally protective of each other,” said Rose. “A few different couples come to mind – every time I visited, the partner was sitting right next to their spouse, holding hands the whole visit.”
Freedman underscored that chaplains are trained not to impose their religious ideas on families, but rather to listen to the patient and family’s wishes.
“I tell the people I train that if you’re doing more [than] 30 percent [of the] talking in the early stages of the relationship, then you’re doing it wrong,” said Freedman.
“Seventy percent of communication is coming from your ears, your eyes, your smile — not your talking. Rabbis tend to be loquacious, we’re talkative,” he said. “But when I’m with a family, I am an open book for them to write on.”
Though the work is emotionally demanding, Freedman said, “Helping people through natural death and dying is one of the most rewarding things people can do.”
When Ally Mosher’s grandfather died, the experience was far from peaceful. His death in hospital after a series of strokes was “chaotic and traumatic and something my grandmother knew she didn’t want for herself”.
After clearly expressing her wishes, Ms Mosher’s grandmother Margaret Butler died quietly at the age of 94 last month. She was in her own bed, in comfort and surrounded by close family members.
“Knowing what she wanted made it a lot easier for us,” Ms Mosher said. “We knew she wanted us to be there when she passed and my mum was holding her hand. It sounds like an odd thing to say but it was a perfect death.”
While we are familiar with the idea of living well, the idea of dying well is relatively new but one gaining momentum in the wider community.
Ms Mosher, a graphic designer from Hazelbrook, uses her own experience to promote “death literacy” although she admits not everyone is comfortable with the subject.
“There is a social stigma about death,” she said. “You can’t talk about death in a healthy, positive way. If you are talking about death you must be weird or morbid.”
Community group The Groundswell Project has spent the past five years creating wider awareness about dying to help overcome reluctance to address the issue.
The group has come up with 10 things people need to know about death, with workshops on the topic to be launched in conjunction with Dying to Know Day on August 8.
The Groundswell Project’s director, Kerrie Noonan, a clinical psychologist specialising in palliative care, found most people sought practical advice about death.
“People really wanted more information about the nuts and bolts stuff,” she said. “What do I need to tell my family? How do I approach the subject with them?”
A report by The Grattan Institute published last year found found that dying in Australia was more institutionalised than the rest of the world, with the majority of people dying in hospital or a residential care facility.
“We’re not around death,” Ms Noonan said. “Death is removed; it takes place in a hospital or a hospice. We don’t have a context for having conversations about death.”
Things to know before you go:
1. Make a plan. Fewer than 5 per cent of people have an end of life plan.
2. Write a will. Only 55 per cent of people who die have a will.
3. Tell someone what you want. Of those who know they are dying, only 25 per cent will have spoken to their families about their wishes.
4. Only 30 per cent of deaths are unexpected. Make a decision about how you want to die while you have time.
5. Doctors don’t die like the rest of us. They are more likely to die at home with less invasive intervention at the end of their lives.
6. Earlier referral to palliative care means living longer with better quality of life.
7. You don’t need a funeral director. DIY funerals are becoming more popular.
8. The majority of Australians choose cremation but there are alternatives including natural burial, burial at sea or donating your body for research.
9. We don’t grieve in stages. Only 10 per cent of us need professional support after a death.
10. 60 per cent of people think we need to spend more time talking about death.
Over the past six years, I have watched hundreds of people transition from life to death — sitting with them in hospice care or in the comfort of their own homes as they sometimes peacefully, sometimes painfully, drew their last breaths. This was my commitment as a hospice volunteer: to support as many individuals as I could in the dying process. This role is becoming increasingly popular as society lifts the veil of silence that surrounds death.
My path to this calling was unexpected. When I met Coop a little over a decade ago, I was 18, fresh out of high school, and eager to explore what early adulthood was like. I didn’t know then that the redheaded flight attendant and comedian would become my first love — and my first great loss. Our first date began with a disclosure. “I have stage-four lung cancer and it is likely terminal,” she told me. Mesmerized by her presence, I decided to overlook that minor detail. Her fiery hair was intact, she laughed like a courageous hyena, and she was spunkier than anyone I had ever met. I told myself that she was going to be just fine.
We proceeded to get to know one another, though we did things slightly differently than the norm. Instead of going to the movies, we watched movies in the chemotherapy wing of the hospital. Our sleepovers were often spent cuddled up on a hospital bed; we proved two people could fit. Aside from the needles and nausea, we were just two people falling in love.
Frightened by the situation, friends would ask, “How can you do this, fall in love with someone who is dying?” My response was unrehearsed and rather simple: “We don’t choose who we fall in love with. It just happens.”
It definitely happened.
As I became well-versed in cancer lingo, I slowly morphed into the caregiver for a declining middle-aged woman — who was also my lover. From a radical acceptance of the situation on a Monday to kicking and screaming resistance that Wednesday, we rode the emotional end-of-life roller coaster together. Coop’s wild ride in this life ended on December 7, 2008. My heart broke that day: the day I began my solo ride.
Weighed down and often immobile in a deep pit of grief, my raw heart ached for her return. I was clueless about loss, but I managed to reach out to a local hospice that guided me to their bereavement team. A very caring social worker and chaplain showed up at my door just a few days later. She offered a presence that I was desperately hungry for. The most important gift she gave me, however, was her willingness to listen. I have come to understand now that listening is the most powerful gift you can offer someone who is grieving. Most people feel like they have to fill the space with words, but open space is what gives the other person permission for grief, praise, and healing.
During our meeting that day, the social worker planted a seed. “I don’t normally say this to people who are in your position,” I recall her telling me, “but I feel that once you have healed some, you may consider involving yourself in hospice.” I barely heard her at the time, but after a while, I returned to her words again and again.
Two years after Coop’s death, I found myself volunteering for a hospice organization. A patient I saw frequently brought me an immense amount of healing. Her name was Leslie, also the name of my mother. Diagnosed with schizophrenia and 48 years old, Leslie was actively dying with no family or friends to support her. I will never forget the day I went into her room, expecting to see her frail in bed, when to my surprise, she jumped up, turned the radio on, and danced all around the room. Although she was dying, her spirit soared. I learned a valuable lesson that day: Though someone may be dying, their soul remains whole.
About a year later, my best friend, Sreeja, took her own life. Grief pierced my heart once again and a lot of my old wounds reopened. It was a pivotal point in my life — the moment I made a choice that would change its course. I realized that Sreeja, Coop, and Leslie were catalysts in my life, pushing me to get as intimate as possible with love, spirituality, and death. After Sreeja died, instead of fighting death, this time I welcomed it. I invited it in as a guest. I offered it a cup of tea. Stretching my broken heart open, I discovered that my passion and work in this world resides in end-of-life care and advocacy, in helping people understand and embrace their mortality.
When we have the willingness to truly acknowledge death, we open ourselves to become that much closer to life. As an end-of-life advocate, death has become my way of life. I believe it is meant to break us down, because in the rebuilding, we have a critical decision to make: Can we be open enough to allow the loss of loved one or our own mortality to transform us?
At the end of last year, I established The Conscious Dying Network, an organization that offers retreat-style workshops and an annual summit on topics of conscious dying, aging, caregiving, and grief. We have a network of teachers and end-of-life pioneers and the message at the core of our work is that we will all die. We don’t know exactly how or when, but we can be 100% sure it will happen. The work, then, lies in getting comfortable with that information, working through our fears, and asking what this truth has to offer each of us in our day-to-day living.
Though they were always painful, over time, my reactions to death morphed from anguish to acceptance. Yes, there was still an ache, but it was accompanied with a bittersweet truth: We will all die. My friend Maitreya has a saying, “Good people die, sick people die, healthy people die, bad people die — we will all die.” She’s right. None of us know when we will go, and it is this moment-to-moment uncertainty that leads me to follow my current path — of reimagining how we approach death — in whatever moments I do have here.
My intention is to continue bringing awareness and presence to the bedsides of those who are dying and those who are living. We will all take the same grand leap one day. Life and death are not separate, but all part of the same journey — and when we find appreciation for the beautiful gift that is our own mortality, we discover that life can be good again after the loss of a loved one. I am living proof.
After cancer returned for a third time David (known as DD) and his family decided to forego further treatment and enjoy life, his mother Sacha Langton-Gilks is keen for other families to think positively about end-of-life preparation and talk of a death plan as we do for a birth plan
By Ruth Wood
It might sound shocking when Sacha Langton-Gilks describes her teenage son David’s death as “absolutely fabulous.” But as his story emerges, it makes perfect sense. David, known as DD, was diagnosed with a brain tumour in 2007 at the age of 11. Over the next five years he endured 20 months of chemotherapy, six weeks of radiotherapy and 11 brain operations – an experience his mother says was a “living hell” for her son.
Then in May 2012, the cancer re-appeared for the third time: it was clear he could not be cured. People advised the family to stay positive and try everything to keep DD alive. However, the teenager and his parents decided to be positive in a different way: by rejecting the powerful medication that might prolong his life by a very short time, and by focusing on enjoying the time he had left.
“He’d already suffered high dose chemotherapy and it hadn’t worked,” says his mother. “Rather than trying to prolong his life with all that entailed, we chose maximum quality of life in a shorter time because that was right for our child.”
Mrs Langton-Gilks 47 who lives near Shaftesbury, Dorset, with husband Toby and children Rufus, 17, and Holly, 12, says that without doubt the way her son died “is going to be the single biggest achievement of my life. Instead of going back and forth to hospital hoping he was going to be cured and putting him through more suffering, we focused on keeping him calm and comfortable at home.
“He had a stonkingly good party with all his friends. But mainly we just chilled out and kept things as normal as possible.”
Mrs Langton-Gilks is keen to help other families think positively about end-of-life preparation and in May gave a powerful talk about her son’s death at an event for parents run by the Brain Tumour Charity[www.thebraintumourcharity.org/dyingwell]. She is part of a growing movement of professionals, carers and patients who say we should approach death the same way as we do that other universal rite, birth – with ante-mortem classes, groups and end-of-life midwives.
“You wouldn’t dream of giving birth without some idea of what to expect and a birth plan” says Mrs Langton-Gilks. “Yet we face death with no equivalent preparation. We need to get to the point in society where it is as acceptable to talk about a death plan as a birth plan.”
Hermione Elliott agrees. In 2011, the midwife and palliative care nurse founded Living Well, Dying Well, a non-profit training provider for end-of-life doulas; like birth doulas, these are self employed laypeople who provide practical and emotional support to families during this rite of passage, either voluntarily or for a small charge.
Seventy per cent of Britons say they would prefer to be at home when they die, yet half of us spend our final moments in hospital.
“We handed over death to doctors many years ago,” said Ms Elliott. “Families don’t encounter it in a natural way and lack confidence. A lot of people don’t even know they’re allowed to die at home or they can get funding for adjustable hospital beds or aids that they can use at home to make it easier.
Others are doing similar work. Susan Court, who works for terminal illness care charity Marie Curie, is running a lottery-funded pilot project in Wales providing “ante-mortem” sessions in which family carers referred by their GPs can get information and support to prepare for the death of a loved one: sessions cover anticipating grief and guilt, dealing with end-of-life symptoms such as loss of appetite and breathing changes, and practical matters such as coping with the sudden end to carers’ benefits after a loved one dies.
“Marie Curie nursing services tend to support people at the very end of their lives,” she said. “But feedback from carers is that there are many things they wish they’d known far earlier. This is very much about building carers’ confidence before any crisis.”
The government is also keen to get people thinking about the end of life. ItsAdvance Care Planning initiative, introduced nationwide in 2008, is similar to a birth plan – only it enables people to communicate their dying wishes rather than what they want for the birth. For example, one person might want to refuse treatment and to die at home with only close family nearby and the cat on the bed; another might want to go and watch Manchester United, have lots of visitors and die in a hospice.
It may sound morbid but US research suggests that making such wishes known may even help us live longer. And in a UK study of almost 1,000 patients in North Somerset, three-quarters of those who had completed advance care plans died in their preferred place, usually home. Just one in 10 died in hospital – significantly fewer than the national average of 50 per cent.
Of course death, like birth, does not always go to plan. All the more reason, then, to make it part of common conversation, says Barbara Chalmers, founder of award-winning website finalfling.com. Here people can get help to get their affairs in order, write bucket lists, upload precious photos, tell their life stories and even plan their final farewells.
“We want to be to death what Mumsnet is to birth,” says Ms Chalmers, a communications consultant whose website gets 8,000 visitors a month. “This is going to be a massive movement within the next 10 years. “
Jon Underwood couldn’t agree more. He is the driving force behind the worldwide Death Cafemovement, which enables people to break the taboo around death over coffee and cake, in local cafes or community centres. Going to a “death café” may seem a world away from meeting your antenatal group for a coffee, but the principle is the same. Only, instead of grappling with the dilemmas of how to bring up baby, the group discusses the end of life – with similar amounts of laughter and tears.
This time last year only 100 cafes had been held worldwide since Mr Underwood co-founded the social franchise in 2011. As of this month the number has skyrocketed to more than 2,000 in 31 countries. Today’s older generation says Mr Underwood, want their lives to be “properly celebrated” as they near the end.
It seems the taboo that surrounds death is set to finally be breaking.