Day of the Dead: Doctors in Australia want to end the taboo around talking about death
By Matt Pickles Maths, science, history and death?
This could be a school timetable in a state in Australia, if a proposal by the Australian Medical Association Queensland is accepted.
They want young people to be made more familiar with talking about the end of life.
Doctors say that improvements in medicine and an ageing population mean that there are rising numbers of families facing difficult questions about their elderly relatives and how they will face their last days.
But too often young people in the West are not prepared for talking about such difficult decisions. There is a taboo around the subject and most deaths happen out of sight in hospitals.
Pupils might have reservations about lessons in death education.
Dying days
But the Australian doctors argue that if the law and ethics around palliative care and euthanasia were taught in classrooms, it would make such issues less “traumatic” and help people to make better informed decisions.
Queensland GP Dr Richard Kidd says young people can find themselves having to make decisions about how relatives are treated in their dying days.
“I have seen people as young as 21 being thrust into the role of power of attorney,” he says.
Their lack of knowledge makes it a steep learning curve in “how to do things in a way that is in the best interests of their loved ones and complies with the law”, he says.
He says the taboo around death means that families usually avoid discussing until it is too late. Most people do not know how their relatives want to be treated if the worst happens.
“So we need to start preparing young people and getting them to have tough conversations with their loved ones,” he says.
“Death lessons” could include the legal aspects of what mental and physical capacity means, how to draw up a will and an advanced care plan, and the biological processes of dying and death.
These topics could be incorporated into existing subjects, such as biology, medicine, ethics and law.
Dr Kidd says education around death would help countries like Australia, the US and the UK follow the example of Mexico, where death is an important part of the culture and even celebrated in the Day of the Dead festival.
There are calls for talking about death to become part of the public culture
He gives the example of Ireland, where he says wakes held after a death can be “joyous occasions”.
Introducing a culture of openly discussing death could even change where we die, according to Dr Kidd.
The vast majority of Australians die in hospital, even though many people say they would rather die at home with their family around them.
“Only 15% of people die at home but in the case of many more people, they could have died at home rather than hospital if there had only been a bit of preparation,” says Dr Kidd.
Matter of life and death
A hundred years ago it was very normal for people to die at home. but modern medical technology allows life to be prolonged in hospital, even though the patient might not have great quality of life.
“People may decide that at a certain point they want to be able to die at home in comfort rather than being kept in hospital,” he says.
The proposal for lessons in death has now been put to the Queensland education authorities and Dr Kidd hopes the message reaches other parts of the world.
“Our main aim is to get young people to start having those conversations with their parents and grandparents to learn more about how they want to die so that they know the answer when they need that information in the future,” he says.
“It should be seen as a positive and proactive thing – information and knowledge can be really empowering to people.”
So perhaps this is something to bring up over your next family Sunday lunch.
It might not be an easy conversation but it could be a matter of life and death.
Steven Eastwood [L] was invited by Alan to film him as he diedBy Helen Bushby
The old man lies in the hospital bed, drawing his last, rattling breath as he fades away from life.
The film camera, positioned just next to him, keeps rolling. We see the nurses move him to another room before they gently clean his body.
“Nobody wants to die but it’s a natural thing, we are biologically determined to die,” says documentary maker Steven Eastwood.
His film, Island, lays bare the dying process by filming four people with terminal illnesses.
Roy’s end of life care was tenderly shown
“Death is seen as a shameful thing – we think we’re a progressive society, but we repress and deny death,” Steven says.
“We’re no better than the Victorians.”
He was a quiet onlooker during the last year of his subjects’ lives, filming them in their homes before they became part of the daily rhythms of life in a hospice.
“To say you don’t want it to happen, you’re putting off facing something,” he says.
Mary talked a lot about her medical treatment during the film
“We need better death awareness to be more familiar with our mortality. I don’t think that’s ghoulish.”
The London-based film-maker’s proposal was accepted, and he managed to get access to film in a hospice on the Isle of Wight.
He speaks fondly of his time there, saying: “These are four people I really cared about – Alan, Roy, Mary and Jamie; three were in their 80s and one was in his 40s.”
Steven regularly made the five-hour journey to the hospice, including the boat trip to the island, which features in the slow, often hypnotic imagery of the documentary and its trailer.
He made the film after having “two quite significant bereavements – my mother-in-law and my best friend, who was the same age as me.
“So I realised I didn’t know very much about what palliative care is.”
Steven thinks we need to face the reality of death, make it part of our daily existence, so it’s less frightening.
The Isle of Wight’s scenery makes up many of the film’s quiet moments
“I think we all have an existential fear – ‘if I see someone I love who’s died, it’ll be too traumatic, it’ll replace all the images I have of them, I’ll never be able to unsee it, somehow it’ll hurt me’.
“But for me it isn’t the case, being with someone after dying, with that intimacy. I found it quite empowering and peaceful.”
He has huge admiration for the people who work in hospices, and hopes his film can “celebrate and show what palliative care is”.
“The most radical, extraordinary people in our society are the least visible,” he says.
“They’re the carers. And the care we receive at the end of our lives is extraordinary.
Steven Eastwood admires nurses working in palliative care, such as the one pictured with Alan
“These hospices which people have anxiety about going into – they’re not morbid, sterile spaces, they’re places of life.”
He says that after one of the screenings of Island, a stranger approached him, saying it had made him “less afraid of dying”.
Steven adds: “It’s not an ambition of mine, but if you can sit through the film and at the end feel uplifted, if you can make some kind of peace with something that will happen to all of us, then that’s a good thing.”
He speaks fondly about all his subjects, talking at length about Alan, whose death we see at the start of the film. Alan died of cancer.
‘He was living to smoke’
“Alan had chain-smoked since he was 16 and he smoked in the hospice with a nurse lighting his cigarette. But he wasn’t dying of a smoking-related cancer.
“This is part of what palliative care is – helping someone smoke until they die.
“The doctors felt that if he hadn’t been smoking he would have died several weeks earlier – he was living to smoke.”
Alan invited him to film his last moments.
The film shows many poignant moments
“The second time I met Alan, we had a connection, he said, ‘I think you’d like to stay with me all the way through and I think that would be great’.
“He wanted to do something radical with his death, he felt quite radical about his life.
“He believed our tissue is just a vehicle and we translate into something else.
“As far as he was concerned, there was no self-consciousness around his image, he thought participating was a way of marking something of his philosophy. He became my movie star, he was like my Burt Lancaster.”
Steven recalls watching Alan die.
‘Bliss in his eyes as he died’
“His death was a long, running out of breaths. It was very peaceful and very beautiful and I felt really moved by it. I didn’t feel sad. He was really ready to die.”
Alan told Steven he had seen a man die when he was just 19, during active service in the forces in North Africa. His commanding officer was shot, and died in his arms.
“He held this man and said, ‘I saw bliss in his eyes as he died, and I knew that what we are experiencing now is not it, there’s more’.
“So for him, his death was the thing he’d been waiting for. We can’t all ask for that.”
Steven acknowledges that of course deaths can be sudden or premature, such as Jamie’s.
Jamie was in his 40s when he died
“Jamie had stage 4 stomach cancer and had a young family, his attachment to his daughter was so incredible.
“He wanted to die in the best way he could with his daughter, so he involved her in everything, talked about his treatment, about what it was going to be like when he’s not there.
“He’s the person who I get upset thinking about.”
The film has been used to help medics in handling end of life care, and Steven and his producer are partnered with Sussex NHS trust.
“We’ve run two sessions with trainee doctors, to use the film as a means to talk about how we speak around death and dying, and how we talk to patients.”
He’s also keen to attract a young audience as he says people in their 20s are the “biggest death deniers”.
Steven talks about the pressure to be “productive, youthful, to look good”.
Other cultures, such as Mexico’s, take a more colourful approach to death with Day of the Dead
“This idea that we’re terminal and have an end is too much. I’ve spoken to young people who think about their late life and say, ‘oh I just want to take a pill to end it, when I’m no longer viable I switch myself off’.
“I do think it’s challenging to confront your own mortality.”
Steven, who also volunteers at his local hospice, thinks other cultures handle death better than we do, saying in Ireland “you see a more sustained grieving process and more familiarity being around the body”.
He also talks about Latin America and Asia, where they have “a completely different attitude towards the dying process”.
Mexico’s Day of the Dead celebrates and remembers family ancestors
“I think we need better education – we are finite, our bodies do decay, and I’ve made my peace with that.
“I hope the film can return us to some extent to our biological bodies, and say yes, everybody will die, most people will die in this way, in their 70s or 80s from either heart disease or cancer, and the care will be extraordinary.
“I don’t find that a burdensome thought. I felt poorly informed, and now I feel better informed by making the film – I hope that it will do that for people.
“We die and we don’t have to turn it into some kind of sanctum, it’s life. And I think Alan showed me that, so yeah, I was very, very fortunate to be invited to film him.”
Death for patients in U.S. intensive care units may look a lot different for people with limited English proficiency than for native speakers, a large study suggests.
About 8.5 percent of U.S. adults don’t speak English as their primary language, researchers note in Mayo Clinic Proceedings. While communication is crucial for decision-making at the end of life, it’s not been clear how language skills might influence the type of care dying patients receive.
For the current study, researchers examined data on 27,523 patients admitted to intensive care units (ICUs) in a large academic hospital over a three-year period. The total included 779 people, or about 3 percent, with limited English proficiency.
Death rates in the ICUs were the same no matter what language patients spoke most fluently, averaging 2.8 percent for both native speakers and those with limited English proficiency.
But among patients who died in the ICU, those with limited English proficiency were 62 percent less likely to have orders for comfort care before they died, and they took an average of 19 days longer to transition from active treatment to only measures designed to ease pain and suffering. Non-English speakers were also 26 percent more likely to be placed on breathing machines and 36 percent more likely to be put in restraints.
Patients with limited English proficiency were 38 percent less likely than native speakers to formally request what’s known as a do-not-resuscitate (DNR) order when they entered the ICU. A DNR tells hospital staff not to take measures to revive them if their heart stops working.
Non-English speakers were also 77 percent less likely to have an “advance directive,” a legal document that spells out what type of care patients want and who should make decisions on their behalf when they’re no longer able to communicate.
“This study shows that the end of life care that patients with limited English proficiency receive is different than for those who do not have language barrier,” said lead author Dr. Amelia Barwise of the Mayo Clinic in Rochester, Minnesota.
“This may be because more patients with limited English proficiency have an authentic desire to die with more aggressive medical therapies or that communication or other barriers prevent health care teams from optimally assessing and implementing a less aggressive approach for dying patients with limited English proficiency,” Barwise said by email.
The differences persisted even after the study team accounted for other factors that can independently impact care at the end of life like race, religion and age.
The study wasn’t a controlled experiment designed to prove how language abilities might directly impact care at the end of life. Another limitation is that it looked at a single hospital and might not reflect what happens elsewhere.
Even so, the findings resonate with other research suggesting that limited English skills can influence how patients are treated, said Dr. Gary Winzelberg, a researcher at the University of North Carolina at Chapel Hill who wasn’t involved in the study.
“Patients with limited English proficiency are less likely to have advance directives because these documents were not designed for patients with low health literacy or patients from diverse cultural backgrounds,” Winzelberg said by email.
Interpreters can help.
“Families should insist on having an interpreter present during family meetings and other communication during which patients’ condition and care options are discussed,” Winzelberg added. “If an interpreter cannot be physically present, there are alternatives including connecting to an interpreter by phone – families should not be asked to serve as interpreters.”
My hospice patients were dying, but they still longed for fresh air and birdsong.
By Rachel Clarke
A furrowed brow and flailing arms were all we had to go on. The grimacing, the way the patient flung his head from side to side — all of it signified an unvoiced anguish. We tried talking, listening, morphine. His agitation only grew.
All cancers have the power to ravage a body, but each assails in distinctive ways. One of the particular cruelties of a cancer of the tongue is its capacity to deprive a person of speech.
Some of us thought he must be suffering from terminal agitation, a state of heightened anxiety that sometimes develops as the end of life draws near. But the junior doctor on the team, Nicholas, was convinced that we could unlock the source of our patient’s distress and volunteered to stay behind in the room.
Nicholas reappeared about an hour later. “You can understand his speech,” he announced. “You just have to really listen.”
When I re-entered the room, the reclining chair that the patient — a tall, angular man in his 80s — had been thrashing around in had been turned to face out onto the garden and the double doors were open wide. Now he sat calmly, transfixed by the trees and sky. All he had wanted was that view.
For a decade, I have worked as a doctor in Britain’s National Health Service. We are an overstretched, underfunded health service in which too few doctors and nurses labor with too few resources, struggling to deliver good care. Burnout among staff is endemic, so much so that it threatens to stifle the kindness and compassion that should be the bedrock of medicine.
But then there are the moments when helping someone is easy: Just nature is enough.
Before I specialized in palliative care, I thought the sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance. And yet, in the hospice where I work, I am often struck by the intense solace some patients find in the natural world.
I met Diane Finch, a patient, in May, on the day her oncologist broke the devastating news that further palliative chemotherapy was no longer an option. She was 51. From that point on, her terminal breast cancer would run its natural course, medicine powerless to arrest it.
“My first thought, my urge, was to get up and find an open space,” she told me on that first meeting. “I needed to breathe fresh air, to hear natural noises away from the hospital and its treatment rooms.”
At first she fought to preserve herself digitally, documenting every thought and feeling on her computer before they, and she, were lost forever. But one day, as she was typing frantically, she heard a bird singing through her open window.
“When you come to the end of your life, you get the sense that you don’t want to lose yourself, you want to be able to pass something on,” she told me later. “When I had whole brain radiotherapy, I felt as though something had dropped out, as if everything I said needed to be saved. It was all running away from me.
“Somehow, when I listened to the song of a blackbird in the garden, I found it incredibly calming. It seemed to allay that fear that everything was going to disappear, to be lost forever, because I thought, ‘Well, there will be other blackbirds. Their songs will be pretty similar and it will all be fine.’ And in the same way, there were other people before me with my diagnosis. Other people will have died in the same way I will die. And it’s natural. It’s a natural progression. Cancer is part of nature too, and that is something I have to accept, and learn to live and die with.”
Ms. Finch recorded a song based on the peace she felt listening to the bird song, and it was enough to bring her some relief from what — up to that point — had been almost feverish efforts at self-preservation.
Another patient, whom I admitted in July with about a week to live, was mostly concerned that I keep the windows open, so that he could “keep on feeling the breeze on my face and listening to that blackbird outside.” I rushed to make sure of it.
Shortly before his death from pancreatic cancer at 59, in the 1990s, the British playwright Dennis Potter described the exaltation of looking out at a blossom that had become the “whitest, frothiest, blossomest blossom that there ever could be” from his window.
“Things are both more trivial than they ever were, and more important than they ever were, and the difference between the trivial and the important doesn’t seem to matter. But the nowness of everything is absolutely wondrous,” he told an interviewer.
People often imagine hospices to be dark and dismal places where there is nothing left to experience but dying. But what dominates my work is not proximity to death but the best bits of living. Nowness is everywhere. Nature provides it.
She’s only seventeen but after battling incurable progressive muscle atrophy for several years, Ankita looks like a ghost already and she knows it. An avid internet surfer, she knows death is very close and there are two questions she’s researching almost obsessively these days. What will happen to my soul after I die? Is there life after death? These are in fact questions which have been of supreme interest for both healthy and ailing people since ancient times. I shared with brave Ankita the recent 4 September issue of Conscious Lifestyle magazine which carries a fascinating article excerpted with permission from “The New Science of Psychedelics: At the Nexus of Culture, Consciousness, and Spirituality” by David Jay Brown, a master’s degree holder in psychobiology from New York University, a former neuroscience researcher at the University of Southern California and author of more than a dozen books. The article shares insights from the world’s top scientific and spiritual experts on whether there is life after death, insights which are so interesting that they’re worth summarisng for readers.
Ram Dass, Psy.D, spiritual teacher, former Harvard professor and LSD research pioneer said as part of his reply, “From a Hindu point of view, consciousness keeps going through reincarnations, which are learning experiences for the soul. I think what happens after you die is a function of the level of evolution of the individual… All the Bardos in the Tibetan Book of the Dead are about how to avoid getting caught in the afterlife… To me, it’s all an illusion—reincarnation and everything—but within the relative reality in which that’s real, I think it’s quite real.”
Mathematician and physicist Peter Russell, author of The Global Brain, said “…a lot of our concerns about life after death come from wanting to know what is going to happen to this ‘me’ consciousness. Is ‘me’ going to survive? I believe that this thing we call ‘me’ is not going to survive… in the end it’s going to dissolve. A lot of our fear of death is that we fear this loss of ‘me-ness’… It’s interesting that people who’ve been through the near-death experiences and experienced this dissolving of the ego and realised that everything is okay when that happens, generally lose their fear of death…”
Pediatric surgeon and physician Bernie Siegel, author of Love, Medicine, and Miracles, said: “I believe in life after death. I think this shows in animals too. There’s a certain wisdom that they have. What I am sure happens to consciousness after death is that it continues on… I personally believe from my experience, for instance, that one of the reasons I’m a surgeon in this life is because I did a lot of destruction with a sword in a past life—killing people and animals… at a deeper level I chose to use a knife in this life to cure and heal with rather than kill with…”
Physician and Consciousness Researcher Larry Dossey, author of Healing Words: The Power of Prayer, said: “…we are led to a position, I think, where we see that even though the body will certainly die, the most essential part of who we are can’t die, even if it tried—because it’s non-locally distributed through time and space… Death is no longer viewed as the total destruction of all that we are… but the thing that really gets my juices flowing is the implication of this research for immortality… The fear of death and whether there is life after death has caused more pain and suffering for human beings throughout history than all the physical diseases combined. The fear of death is the big unmentionable—and this view of consciousness is a cure for that disease, that fear of death.”
Doctor, developmental biologist and psychedelics researcher Rick Strassman’s book DMT: The Spirit Molecule makes a convincing case for the possibility that endogenous DMT in our brains helps to usher our souls in and out of our bodies. His take: “I think life continues after death, but in some unknown form… a lot depends upon the nature of our consciousness during our lives—how attached to various levels of consensus reality it is. My late/former Zen teacher referred to like gravitating toward like in terms of the idea of the need for certain aspects of consciousness to develop further, before it can return to its source. That is, doglike aspects of our consciousness end up in a dog in a life after death, humanlike aspects get worked through in another human, plantlike aspects into plants, and so on.”
Parapsychologist and consciousness researcher Dean Radin, author of Supernormal: Science, Yoga, and the Evidence for Extraordinary Psychic Abilities, said as part of his reply: “… as to some kind of a primal awareness—life after death—I think it probably continues… when you go into a deep meditation and you lose your sense of personality, that may be similar to what it might be like to be dead… If there’s anything that psychology teaches it’s that people are different. So I imagine that there may be as many ways of experiencing after-death as there are people to experience it. And no one explanation is the ‘correct’ one.”
Biochemist, cell biologist and parapsychologist Rupert Sheldrake, author of A New Science of Life, said: “… I think our minds extend beyond our brains in every act of vision… when we die, it’s possible, to my way of thinking, that it may be rather like being in a dream from which we can’t wake up… It’s possible that we could go on living in a kind of dream world, changing and developing in that world, in a way that’s not confined to the physical body. Now, whether that happens or not is another question, but it seems to me possible…”
In Brown’s words, “Death is, perhaps, the greatest mystery known to human beings. While there is compelling evidence that there is life after death and that consciousness survives death, there is also compelling evidence that it does not and the truth is no one knows for sure what happens when we die.” That’s exactly what young Ankita, preparing for death, felt after reading the excerpted bits in Conscious Lifestyle. And yet account after account from a variety of sources underlines the reality of life after death, the reality of other worlds. As parapsychologist Sheldrake theorised, it may be that expectations affect what actually happens. It’s the “may be’s” that will ensure, as they have done down the ages, that the mystery of life and death remains eternal till researchers crack it. But will that ever happen? May be.
Anthony Bourdain; Kate Spade; friends, teenagers, neighbors, veterans; my father. Every suicide is distinct and differently devastating, for those who leave and for those who are left.
Yet there are some commonalities, some moments of recognition both in terms of frequent contributing causes and also in terms of what comes next. Here are the hard and important lessons I’ve learned since my father took his life in 2007—when he was 60, and I was pregnant and in graduate school:
1. Suicide is terrifying.
Suicide is what philosophers and mathematicians refer to as a surd—nonsensical, unexpected, a cavernous impossibility that is nonetheless real.
How often do we presume that other people’s lives are on positive trajectories, if not always totally predictable ones?
Perhaps life looked fine, even good, on the outside (as was the case with Bourdain). Or perhaps friends and family members knew the person was struggling but had sought help, and they seemed to be OK (Spade).
After a suicide, many people will say it “doesn’t make sense.” In many cases, yes, there’s a stunned inability to process that the person is gone. But I think there’s a deeper fear at work here, too: the terror of realizing, “Oh my god, if it could happen to them—could this happen to anyone, even people I love, even me?”
It is OK to admit that fear and the cascade of uncertainty it unleashes. Suicide uproots our background assumptions that life makes sense.
2. There are no answers.
There may be generally explicable features in many suicides, but there are no ultimate answers. Hold space for the uncertainty, for the dimensionality of who this person was.
My father was a Navy fighter pilot before he left the military to become a commercial airline pilot. Like many vets, his experiences in Vietnam were traumatizing; he talked about them only rarely, but when he did, the moral and personal agony was palpable. Did he have PTSD? Probably, and society needs to do a better job of destigmatizing veterans and people who have been through trauma. But PTSD isn’t the full story.
The most common response people have when I say that my father killed himself is, “Oh, that’s terrible. Was he depressed?” We don’t know. As a pilot, he resisted seeking psychological diagnoses that would prevent him from flying.
Perhaps he was bipolar, as many family members now think likely. It’s natural to wonder, but we will never know for sure. Posthumous speculation can clarify past patterns. Diagnoses of depression are attractive to people who want explanations. But again: Be careful with the urge to make this “make sense”—because often, that is another way to say, “Oh, this would never happen to me or someone I know.” One of the things that suicide challenges us to do is to recognize that other people’s realities and dimensions far exceed the capacity of our projection.
3. Humility goes a long way.
Check yourself: Avoid explaining what this death means to someone who is grieving a suicide. (This is especially important if you think you have insights or are convinced you are being helpful.) Be present. People in grief need to lean on you, not be lectured by you. And what is true in grief more generally is excruciatingly so when mourning a person who has died by suicide. Frankly, unless we have explicitly said, “What do you think?” it is not at all helpful to hear your speculations or interpretations of what this event means. What we need is the space to grieve and heal in our own complicated realities.
More generally, all of us can work to eliminate unnecessary sayings that are obvious triggers—like “the line at the grocery store was so awful, I just wanted to kill myself!” or making hand gestures that mimic firing a gun into your mouth. It’s been 11 years since my father’s death, and I still cringe at those expressions. Communication evolves with social consciousness, so it’s time to retire those basic expressions.
4. Suicide, I believe, stems from hopelessness—not selfishness.
Some people feel that suicide is a selfish act because it fails to account for the difficulty and devastation wrought on the people who remain. But I agree with the many experts who suggest that suicide is often the result of a total loss of hope and self amid a tsunami of despair.
Suicide may feel selfish to survivors—how could he?—but when someone dies by suicide, they do it not out of selfishness or spite. They do it out of ultimate loneliness and pain so deep that most of us cannot begin to comprehend it because it is on a totally different plane of existence.
5. High-functioning people don’t give many signals. When they do, take those seriously.
My father expressed to a few people that he was thinking of ending his life. Those people, who I know loved him deeply, took him at his word that he would seek help. But I know now that such statements are the high-functioning person’s attempt to seek help—it takes massive effort and will to reach across a divide of loneliness and despair, to entrust someone with such honesty about such heavy burdens. It is another way of saying, “I am alone. I don’t know how to proceed; please help me.”
Take these statements seriously. Accompany the person to get help, right then if possible.
Our society can be very isolating. One antidote that we can give to one another as human beings in moments large and small is in our ability to see one another—to affirm the uniqueness and worth of each individual. We can contribute to bonds and societies that feel secure, safe, trustworthy, and consistent—and perhaps make life a bit less lonely, not just when someone confides in us, but in the caliber and kindness of our everyday interactions.
6. For survivors, some grief is incommunicable.
It is not your job to make your grief legible or to make it conform to other people’s expectations. As a survivor, you will have major triggers that are unrecognizable to most people, and your reactions will vary. I can be totally leveled by the image of my dad’s back in his blue blazer as he strode tiredly away from me at my sister’s graduation, or by how I imagined him leaving the house for the last time, or the first 100-plus times I drove by the fire station outside of which he shot himself. Even the feeling of exhilaration on white water, a delight that he and I shared—these are all particularly potent emotional, geographic, and physical triggers for me, even 11 years later. Most people have no idea.
If you are a survivor, let the emotions surface, and let them pass (not easy: It’s like getting thrashed by a huge wave of rage, sadness, and ugly crying). Let me repeat: You don’t have to hide your emotions, and you don’t have to apologize for them. You don’t even have to explain them. Grief is a shape-shifting, surprising, and (in the case of suicide) often terrifying entity. Lean into people who are trustworthy, nonjudgmental, and who let you be you. And when you meet people who have also experienced the suicide of a loved one or family member, you might find yourself weeping together on top of a mountain during spring ski season (true story). It’s OK.
Presence, care, laughter, and gentleness are salves. I have personally found therapy to be fantastically helpful, and many people benefit from survivor support groups. If you are trying to support someone who is grieving the loss of a friend or family member through suicide, support them with presence and infrastructure. Just hug. Sit. Bring food. Come over to walk the dog together. Call to say you’re thinking of them.
7. Your presence will sometimes make people uncomfortable. Many will react strangely.
People say weird and even hurtful things out of their own profound discomfort after a suicide. Others will disappear entirely from your life. This sucks, but it’s true. Suicide (along with what I call the 3Ds—other forms of sudden death, divorce, and disability) can make people really nervous, and as a result they may react to your presence in all kinds of intense and often unhelpful ways.
One person with whom I was close didn’t call, text, or write me for nearly a year after. Only when I ran into her at a party by chance later did she laugh awkwardly and say, “Yeah, sorry about that. I mean, what could I even have said?” My answer now: “Just call and say you don’t know what to say, and you love me and are thinking of me.”
I have learned that people’s reactions and statements say much more about what they are grappling with than what is true for you. This doesn’t make it easier in the moment, but it does mean you don’t have to take on their stuff. Find your way with the people who let you be you, without foisting their own anxious interpretations onto you.
8. Memorialize in ways that feel right to you.
Just as everyone grieves differently, everyone memorializes differently. In the aftermath of a suicide, ritual and burial are important, though they can take many forms. For some people, traditional religious funeral services may provide important closure. For others, those same services might feel like emotional handcuffs.
As time goes on, trust your creativity and the legacy of the person’s memory. What are the moments that make you think of them with a grin? Consider memorializing a place or an activity that feels like a positive legacy—a meditation bench in a treasured spot or an annual walk with organizations that raise awareness about suicide or mental illness, for example. I have found it meaningful to memorialize my father by consciously giving him a shout out during water sports that we both loved.
Finally: The days around the anniversary of the suicide will be tough. Be gentle with yourself in these times. You also deserve love and kindness.
9. You will change, and your relationships will too.
Suicide is an extreme event that, for survivors, puts much into excruciating texture. For me, my father’s death began a decade-long journey of self-reflection—about myself, my family, my partnership, me as a parent, and society more generally. It has involved devastating anxiety that, with time and therapy and life changes, has given way to profound, gentle, exhilarating clarities. Many relationships, including my marriage, were sundered as a result of this journey.
It has not been easy. Grief doesn’t end, but it does change, and with time it becomes less debilitating, more gently poignant. I wish beyond words that my daughter could have met her grandfather. I also have found ways that my father’s positive legacy lives on in me—and in her.
One aspect of my journey is a radical honesty, forged in agonies that none of us wished on ourselves. I am the person that I am because of many factors. One of them is my father’s suicide.
10. You can be OK.
There are no neat closures to the surd of suicide. But healing can be real. Small or large changes in your life may emerge over time. Sometimes they will surprise you. But I’m here to tell you: There is healing, and believe me—you are not alone. With the life you have, you can narrate the story that you are always unfurling.
David Price, of Westminster West, takes a walk through the backyard of his residence.
By Bob Audette
David Price is dying, but it’s not the colorectal cancer he was diagnosed with two years ago that is killing him. Doctors removed the tumor shortly after his diagnosis, but Price believes it’s only a matter of time before fate catches up with him.
Rather than let chance decree his date of death, Price, who is a psychologist with an MBA, decided to take the matter into his own hands. About a month ago, he stopped eating and next week, he stops drinking. He expects he will die a week or two thereafter. He faces his death with very little fear and a mental calmness that is peaceful and accepting.
“God has blessed me,” he said. “I have always had a deep faith. I know what’s on the other side.”
Price said he loves the life he has lived, but the current quality of his life was compromised following his cancer surgery. The surgery resulted in having what he calls “a dysfunctional rectum” and as a result, has to use a colostomy bag.
“I will never again have a normal bowel movement,” he said. “I will always wear Depends and I will always need to be close to a bathroom. If I can’t go to the bathroom properly, that’s just not a life.”
While Price said he is “supposedly cancer-free,” he has been told by his doctors he is at a high risk for a recurrence. “Plus, I have multiple health issues that could eventually kill me, including blood clots and hernias. I have epilepsy and I was falling as often as twice a day due to my medications. If I fall and crack my skull and go into a coma, where am I going to be lying for six years? Not at home. I don’t want to be in a nursing home.”
He understands that some people may judge his choice to end his life now, and many people have tried to change his mind. Price also acknowledged that while he believes he is making a rational decision based on his spiritual values and ethics, his choice is unique to him and no one else.
Act 39
In 2013, the Vermont Legislature passed Act 39, the End-of-Life Choice Law, which allowed Vermont physicians to prescribe medication to a Vermont resident with a terminal condition with the intent that the medication be self-administered for the purpose of hastening the patient’s death. Act 39 set forth conditions for the patient and doctors to be in compliance with the law, including that the patient be capable of making his or her own informed decision. But because he doesn’t have a terminal illness, Act 39 doesn’t pertain to Price.
“I don’t fit the criteria as much as my doctors might like, and they tried their best to convince me otherwise, but all of my medical providers have been supportive of my decision,” said Price, who doesn’t consider what he is doing as suicide. “It’s not extending my death.”
Betsy Walkerman, president of Patient Choices Vermont, which successfully advocated for the passage of Act. 39, said it would be a mistake to conflate Price’s decision with suicide.
“An end-of-life decision is really different from a situation where someone is distressed or has serious depression,” she said. “There are people in the last stages of life who don’t qualify for Act 39 who have stopped eating and drinking. It’s a person’s own choice how to live their life and how to spend their last days and weeks. This is a decision that any person can make and doesn’t require Act 39 and permission from anyone.”
Walkerman said Price’s decision is a demonstration of how people take control of how they die.
“There are so many ways to prolong life as the medical community defines it,” she said. “But whether a person wants that kind of life … it doesn’t sit there in a vacuum. It’s part of the continuum of the evolution of medical care and people’s interest in personal choice.”
Rev. Audrey Walker, of the First Congregational Church in West Brattleboro, said she counseled Price on his decision, and while she advised against it, she understood why he decided the way he did.
“He has reached what I consider to be a very rational decision based on his spiritual beliefs and I support his decision,” she said.
Rev. Shawn Bracebridge, the pastor at Dummerston Congregational Church, met with Price but only as a friend, he said, and he supports Price’s decision as well.
“His decision is his and his alone and it’s grounded in his spirituality,” said Bracebridge.
Medical ethicist weighs in
Arthur L. Caplan, head of medical ethics at the NYU School of Medicine, noted that doctors are required to have a patient assessed if they believe he or she is depressed or otherwise rendered incompetent by a mental health illness.
“If that’s not a concern,” said Caplan, “if Mr. Price is rational, he retains the right to refuse medical treatment. He doesn’t have to accept intervention. In fact, he has a fundamental right to deny an act of intervention.”
Caplan noted that people make this type of decision every day, and by example referred to a Jehovah’s Witness who might refuse a blood transfusion, even knowing it’s a simple life-saving procedure.
“Mr. Price’s doctors might have a good sense that their patient is well aware of what he is doing, that he is coherent and that he is able to comprehend his choices,” said Caplan. “It is the doctor’s duty to try to talk him out of, offer pain control or tailor your care, but that doesn’t mean the patient will be persuaded.”
Caplan also noted that some people with chronic illness who take their own lives are not as deliberate as Price appears to be, who has planned his death in advance after consulting with doctors, his therapist and members of the clergy.
Even when someone has a diagnosed mental illness that is affecting his or her decisions, said Caplan, it can be very difficult to stage an intervention.
“It’s very difficult to force feed someone,” he said. “They could pull the tube out. You would probably have to tie him down. It’s very hard to do with an unwilling person.”
A doctor might refer a patient for a psychological assessment, which could result in a court hearing to decide a person’s fate, but Caplan said courts are often reluctant to get involved in end-of-life decisions.
“Our society leans very hard on honoring individual autonomy,” he said.
Just the same, doctors who are trained to preserve life at all costs do not take it lightly to step aside and let a non-terminal patient die, said Caplan.
“It’s a challenge for them, because they are thinking they can manage epilepsy and they can manage blood clots,” he said. “But they are also trained to respect a patient’s choices.”
“The real issue,” said Caplan, “is not so much is he competent, but does he need spiritual support? Is his quality of life bad because he is depressed or doesn’t have companionship? Does he have friends and a social life?”
If anything that can still be expected from Price’s doctors, said Caplan, is that they stay in contact with their patient and keep checking with him in case he changes his mind and needs medical care.
“I couldn’t have been evaluated more in the past two years,” said Price. “If I was suicidal I wouldn’t be doing this right now.”
Price said his own decision has been informed by his years of practice — especially in the days when there was no treatment for HIV/AIDS — helping people confront their own mortality and helping them “untangle suicide from their sincere desire to end their lives. Most were facing horrible continued pain and suffering.”
‘We don’t know how to live in this world’
Price, originally of Dallas, moved to New England 16 years ago with his then-husband, Michael Lefebvre, to be closer to Lefebvre’s parents, who were ill. They lived in Gardner, Mass., until their divorce in 2008, when Price moved to what he calls his “mountain home” in Westminster West.
“I had all these wonderful plans for retirement,” he said. Instead, said Price, since his surgery he has been diving into his spirituality, studying up on Buddhism and Christianity.
“It’s helped me to realize this is all an illusion,” he said. “All of these material things we grab on to, that we think bring happiness, they don’t bring happiness; they bring us pleasure, momentary pleasure. But they also bring us pain and cost a lot of money. We don’t know how to live in this world. We copy others. I went through all that. I know the lifestyle and it did not lead to happiness.”
Though he has always been a spiritual man, he was not a regular attendee of church. His parents, who still live in Dallas, are Southern Baptists, a denomination with which Price has issues.
“There is a lot of negativity,” he said. “I don’t believe in hate. They don’t call it hate. They think they sit in judgment of the world.”
His parents also did not accept the fact that he is gay. “My family was disappointed in my whole life, not becoming a Baptist and becoming a psychiatrist. To them, mental illness is a sin that can be prayed away.”
The United Church of Christ accepts him as he is, said Price.
“They also accepted me as someone who sees ghosts,” he said. “I didn’t expect to be accepted, but they were like, ‘Yeah, Jesus saw and spoke to spirits.'”
Price firmly believes that all humans have psychic abilities, but not everyone chooses to accept that or practice those abilities and he also believes humans need to be physically close to the earth, touching it with bare flesh as often as possible.
“There is so much energy from nature that we are blocking with our concrete and steel,” he said, which is another reason he wants to die in his mountaintop home and not in a hospital or a nursing home. “I want to be here where I am absorbing the energy.”
‘A very spiritual man’
Price granted his therapist, Supriya Shanti, permission to speak with the Reformer. Shanti has been his therapist since the time Price was diagnosed with cancer.
She said his decision to end his life is not out of character, nor does she believe is it influenced by any mental health issues.
“He is a very spiritual man,” said Shanti. “His decision is a result of his connection to his spirituality, the spirit world and god and his trust and faith in that.”
Shanti noted that Price is a well-respected therapist in his own right and his decision has been informed by his years of offering counseling to his own patients.
“It’s his personal choice,” she said. “Given how he’s been fighting for two years and continues to suffer due to his medical issues, I think it’s his right to choose for himself and I support his choice.”
However, on both a professional and personal level, Shanti said she wrestled with Price’s decision.
“I definitely feel sad on a personal level,” she said. “Professionally, it creates some conflict, because I don’t know if we kept working together, maybe he would make a different decision. But the bottom line is, whoever shows up in my office, it’s my job to support and guide them. I help empower people to make their own decisions.”
Shanti also encouraged people to call and visit Price before he dies, rather than wish they had done so after he is dead.
“David wants company and wants honest conversation,” she said. “Now is the time to visit. It’s really important, especially in the last days of life on this physical plane, to be surrounded by people who love you.”
A necessary discussion
Walkerman said Act 39 and people like Price have ignited a discussion that has been a long time coming.
“He had a discussion with his family, his doctors, clergy,” she said. “A lot of people have trouble even starting these conversations. Any story helps illustrate for people how to have those discussions, rather than suffering alone, thinking they have no choice.”
“It’s important for people who are facing health and emotional crises to take a lesson from this in that you can reach out and get support for your spiritual and emotional needs,” said Susie Webster Toleno, the pastor at the Congregational Church of Westminster West. She said that while she didn’t counsel Price on his decision, they discussed the spiritual aspects of his illness and end of life. “There are people who will answer your phone call, who will listen and provide support,” she said.
Toleno said those people include local clergy members and organizations such as the Brattleboro Area Hospice, at 802-257-0775 (Brattleboro area) 802-460-1142 (Greater Falls area) or brattleborohospice.org.
“Brattleboro Area Hospice has a lot of support for people who are in tough health situations, even if they don’t qualify for hospice,” she said.
Price said if, when he first received his cancer diagnosis, he had the knowledge he has today, he might have chosen not to have surgery to remove the cancer from his body.
“It would have been quick and easy and now here I am, extending my death. But I suspected I wasn’t going to survive. Maybe my family needed time to accept that and maybe I had amends to make. I did a lot of forgiveness work, which is the most important thing.”
If there is one last notion he would like folks to consider challenging it’s the belief that all the world is knowable.
“What we think we know it probably not even one-thousandth of what it out there,” said Price, especially when it comes to spirituality. “Philosophers have been arguing about does God exist for forever. To think that you are smarter than Plato, to me that is intellectual arrogance. Even Einstein said ‘The more I study science, the more I believe in God.'”
