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Why death matters

— Reframing life in terms of death reveals some of the biggest philosophical problems with how we think about living systems.

By Adam Frank

Definitions of life are notoriously hard to pin down. Is a fire alive? It has a kind of metabolism, and in a sense it reproduces by spreading. Is a crystal alive? It certainly grows. What about a virus, which can reproduce and mutate, but only if it can find a living cell to use as a host?

Scientific definitions of life tend to focus on things like reproduction, metabolism, heredity, and evolution. But there is another, more basic property of life that has profound consequences for its study, and which I want to explore today: the capacity to die. While this may seem obvious, reframing life in terms of death reveals some of the biggest philosophical and scientific problems with the way we think about living systems.

You are more than your DNA

Focusing on the biomolecular mechanisms of life has yielded remarkable insights into what happens inside cells. However, this emphasis over the last 70 years on molecules such as deoxyribonucleic acid has produced a kind of myopia that can lead researchers to blind themselves to a critical insight. Life is not just molecules. It cannot be reduced to the interactions of a set of molecular actors. Instead, life is really about organization. This is why, alongside the emphasis on biochemistry, there has always been a focus on life as an organism. An organism is a whole that is also wholly invested in its interactions with the environment. Biomolecules would never take on the activities they play in the cell were it not for the higher levels of organization the cell makes possible.

And this is where death comes in.

Biologists Humberto Maturana and Francisco Varela developed the concept of autopoiesis in the 1970s and 1980s to describe the essential character of life as an organism. Autopoiesis means “self-producing.” The term, which Maturana and Varela coined, refers to a kind of strange loop that occurs in living systems whereby the processes and products needed for an organism to survive must be created by the processes and products needed for the organism to survive. The classic example is the cell membrane, whose presence is required to create the very compounds that maintain it.

Over the next year I will be writing more about autopoiesis, as it forms part of a new research program on life and information funded by the Templeton Institute. The key point for today is to understand that one thing Maturana and Varela wanted to focus on with autopoiesis was its intrinsic capacity to end. To be an autopoietic system is to constantly face death.

To be alive is always to live in a “precarious condition,” as Varela called it. You, me, a butterfly, a single-celled organism — all life must constantly be at work to produce and maintain itself. Life can never take a rest from the internal activities it must carry out to do that. And this self-production and self-maintenance must work on a remarkable array of scales. At the molecular level, the ribosomes that drive life’s nano-machinery must never halt. At the cellular level, the membrane can never stop its work of monitoring and adjusting the flux of compounds into the cell. At the system level in more complex life, the various components of a plant or animal must always be synchronized and synchronizing.

Or else, what?

We know the answer to that question, for it drives so much of our higher animal psychology: or else, we die. The organism is always and forever bound to its state of precariousness, and eventually that precariousness must win. It always wins. To be alive is to be able to die.

Life is not a blender

This emphasis on death as the definition of life serves many roles and will be useful for many purposes. On a purely scientific level, it can help us understand which features of organisms and their organization to focus on. This is important for the Templeton project I am beginning, because it sharpens our focus on how information can serve to keep an organism viable, i.e. self-maintaining.

On a philosophical level, the focus on death reveals a key problem with reductionist descriptions of life that rely on what is called the machine metaphor. For reductionists, life is nothing but a set of molecular mechanisms. We are therefore nothing but biochemical machines. This is a fundamental mistake, because while a machine can be switched off, there can be no “off” button for life. Even seeds that remain dormant for years are not “off” like my blender is off when I am not using it. Life is not a machine.

Finally, understanding life as what can die has a personal or even spiritual valence. It gives the lie to the strange transhumanist, techno-religious fantasy about conquering death. While I am all for extending my life if I can, I would never think to avoid its end. Instead, what I long for is the fullest experience I can muster out of this strange trip. Then when death does come, I will greet it like the old friend it has always been.

Complete Article ↪HERE↩!

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Health care providers learn to guide dying patients through a psychedelic trip

— A 5-day Hamilton workshop taught participants how to use psilocybin therapeutically

Participants in TheraPsil’s psilocybin therapy training in Hamilton (clockwise from top left: psychiatrist Cheryl Willsie, psychotherapist Deven Wilkins and social worker Richard Utama) lay under a strobe light that produces altered states of consciousness, according to the organization.

By Saira Peesker

Psychiatrist Cheryl Willsie spent nearly a week in Hamilton learning how to walk a patient through an experience on psychedelic drugs.

She and two other healthcare professionals learned how to prepare a patient for a therapy session where they take psilocybin – the psychedelic compound in so-called magic mushrooms.

Willsie also learned how to support the patient through the experience and how to help process what came up in a later session.

The five-day training session at Energy Tap, a psychotherapy office on York Boulevard, was offered by TheraPsil, a national organization that advocates for expanded access to psilocybin.

The group learned how to guide patients through an experience on psilocybin with the goal of helping them to better understand their inner world – and ideally, to feel better.

Many of the patients who can legally access this kind of treatment are facing death from a terminal illness, noted Willsie.

“Around end-of-life care, it’s been really remarkable to see the benefits people have had with only two or three dosing sessions,” she told CBC Hamilton on Monday.

“People have had a lot of relief around their mental and emotional suffering around having a terminal diagnosis.

Willsie, who is from Sarnia, Ont., was drawn to include psychedelics into her practice after seeing promising research into its mental health uses.

“I realized that with medication and with talk therapy alone, most people just weren’t getting better,” she said.

“That’s really driven my excitement about psychedelic-assisted therapy.”

‘Deepening and expanding the therapeutic process’

Willsie already offers therapy using ketamine, a dissociative drug that can also have psychedelic and anesthetic effects. It can be legally prescribed by a physician.

“I am seeing that [ketamine] allows people deeper access to their subconscious in reprocessing past trauma,” she said. “It’s sort of deepening and expanding the therapeutic process.”

Research is showing psilocybin can have positive outcomes for patients as well.

A Johns Hopkins University study published last year found two treatments of psilocybin, when paired with psychotherapy, can produce “substantial antidepressant effects” in patients with major depressive disorder for more than a year.

A woman lays on a carpet on her back with her arms spread wide and eyes closed.
Psychiatrist Cheryl Willsie participates in a TheraPsil training session held in Hamilton over five days ending Tuesday, July 31, 2023. She is pictured doing a breathing exercise that produces an altered state in participants.

According to the American Microbiology Association, psilocybin has shown promise in managing various psychiatric conditions, including obsessive-compulsive disorder, alcohol use disorder and substance use disorders.

In late June, the federal government announced nearly $3 million in funding for the Canadian Institutes of Health Research to support three clinical trials examining psilocybin-assisted psychotherapy to treat alcohol use disorder, treatment-resistant depression and end-of-life psychological distress in advanced-stage cancer patients.

“While clinical trials with psilocybin have shown promising results, at this time, there are no approved therapeutic products containing psilocybin in Canada or elsewhere,” states Health Canada’s website, suggesting interested patients seek out clinical trials.

Patients with some conditions can apply for legal access

But while psilocybin remains illegal, patients with end-of-life distress, treatment-resistant depression and major depressive disorder can apply to Health Canada to access it.

In 2021, just over 60 Canadians were granted an exemption, according to Health Canada data obtained by CBC London. In 2022, 97 exemptions were granted. This year, only three patients had been approved to use psilocybin as of June.

Those are the patients TheraPsil is training healthcare professionals to support.

The organization is also pushing the government to simplify the program and expand access, says Yasmeen deRosenroll, the organization’s director of training and operations.

“Right now there are people who are dying because they aren’t getting a quick enough response and it is a bureaucratic process,” she said Tuesday. “People are either dying without access or going to the underground.”

A recent petition, created by University of Alberta ethicist Brendan Leier and supported by Conservative Member of Parliament from Alberta Garnett Genuis, is also asking the federal government to make it easier to prescribe psilocybin.

The petition, signed by 3,932 people as of Aug. 2, notes psilocybin’s “low potential for harm… It is paradoxical and unethical to allow physicians to provide [Medical Assistance in Dying] for their patients while preventing the same physicians from treating their end of life distress with psilocybin.”

Some dying patients ‘completely transformed’ by treatment :advocate

TheraPsil’s deRosenroll says that while there is risk in the treatment – it’s not a panacea, and can leave some patients disappointed and dejected if it doesn’t work for them – the risk is higher for people who don’t use trained professionals to guide their experience.

“We advocate for legal use and with trained healthcare professionals because professionals belong to a professional college with a code of ethics and a disciplinary body,” she said, noting TheraPsil has trained more than 500 people so far, and offers a directory where patients can search for a care provider who has been trained.

The organization has seen numerous success stories, which is what propels the organization’s work, says deRosenroll.

“We’ve had patients share stories about how their lives have been completely transformed and perhaps instead of choosing [Medical Assistance in Dying], they will then continue on with their life after the psilocybin session,” she said.

“We’ve also heard the opposite of people being like, ‘You know what? I had my psilocybin experience, I’m content, and I am now ready to die.'”

Complete Article ↪HERE↩!

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To ease my depression, I volunteered to help dying people

— As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.

by Keri Wiginton

My 90-something friend is relieved as I help him collect coats. He’s taking a trip somewhere his family can’t follow, he says, but he doesn’t want them to get cold after he leaves. I keep packing even though his story doesn’t make sense, at least not to me.

Gray clouds catch his eye, and he switches gears to the weather. I ask him what else he sees out the window. He dives in and out of his past, joking and smiling along the way. He was quite the ladies’ man, he says with a wink.

Twice a week for more than a year, I’ve given my time to the dying. Most people I visit have Alzheimer’s disease or another form of dementia. As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.

How did I get here?

It was my therapist’s idea.

A few years ago, my 14-year-old cat suddenly got sick and died. Something in me broke when I felt her stop breathing. Still reeling from the loss, I found out my stepfather had a fast-growing brain tumor. He died five months later.

I learned how different the day feels when you know it might be your loved one’s last, and every second felt saturated with significance.

I savored every dad joke, every spoonful of ice cream, every mundane movie night. And when I watched him unwrap Christmas presents for the last time, I felt hyperaware of how much I’d miss his tendency to tear up no matter how small the gift.

My low mood persisted long after his funeral but not because of my sadness. The experience shifted my perspective on life. Unlike prior depressive episodes, regular exercise, mindfulness meditation, antidepressants and avoiding alcohol weren’t enough to bring me back this time.

So, my doctor set me up with a goal-oriented behavioral counselor.

I told the therapist about my stepdad and that I felt a profound pull to help others process grief or make meaning before their death.

We agreed that volunteering in a hospice might be a good fit, but I felt too overwhelmed to get started. He said to take one small step each week.

I looked at the nonprofit’s website and noted the volunteer requirements. A few weeks later, I applied. It took me three months to go from thinking the whole thing seemed impossible to attending my hospice-care training session. I wouldn’t get my first volunteer assignment for four more months.

That first day, my heart raced as I nervously sat in my car outside the memory care center. I’d never done anything like this before, but I’m glad I willed myself to walk in.

After that, I relaxed into my new role visiting people who are dying.

I give caregivers a chance to nap or run errands. While they’re out, I get to socialize with their loved ones as we listen to big band music from the ’40s, play Scrabble or go outside to feel the warmth of the sunshine while we chat.

Many of the folks I spend time with have memory challenges, so conversations may take twists and turns. I’ve learned to explore with them whatever path they’re on, and we often have fun doing it.

I find immense value and grounding in offering companion care to someone who’s nearing the end of life. I look forward to it every week.

Health professionals in the United Kingdom routinely recommend so-called social prescribing, linking people up with something that matters to them, whether it’s working in a garden, at a museum, or in my case, hospice and memory care.

“People are sometimes scared to develop a relationship with someone who has dementia,” said Rebeca Pereira, a psychology master’s student at the University of Saskatchewan who studies relationship-building in long-term care settings. “But we found that volunteers see that the person is much more than the disease.”

Pereira’s research mirrors my experience. Plus, when I make someone’s day a little brighter, I feel warmth in my chest similar to what wells up during a meditation session called loving kindness, a mindfulness practice where I imagine sending joy out into the world.

My compassion leaves a lasting impression even if my identity doesn’t.

Stephen G. Post, a bioethicist at Stony Brook University and an expert in compassionate care and the relationship between giving and happiness, explained why.

“People with dementia can be very emotionally sensitive and they can pick up on that presence,” said Post, who explores this topic in his book “Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease.” “Just because someone’s linear rationality is compromised that doesn’t mean their consciousness is.”

I feel a sense of loss when people die, but our time together matters more because I know it’s short term. I also have found myself to be more present and less anxious, both when I’m volunteering and when I’m not.

I sleep easier at night and am less distracted at work. I have more energy to exercise and stronger shock absorbers for life stressors, including handling little problems such as someone cutting me off in traffic or big challenges like a family member’s Alzheimer’s diagnosis.

A cascade of chemicals such as dopamine, oxytocin, and other endorphins are probably responsible for the “helper’s high” that follows an act of kindness, said Post. These hormones are part of the mesolimbic pathway that responds to food or social rewards, he said, which helps humans cooperate and survive.

In other words, “you’re wired to feel better through doing this,” said Post.

At the same time, pathways that fuel depression symptoms may turn off, “including feelings of bitterness, hostility, rumination and other destructive emotional states,” Post said.

I feel more confident in other areas of my life because I feel successful at volunteering.

“This sense of competence may boost your self-esteem so that when stressful things happen, you feel better able to cope with them,” said Ann-Marie Creaven, an associate professor of psychology at the University of Limerick in Ireland.

We also have a fundamental need to belong to a group or to feel “that we’re important in someone’s life,” said Creaven. And this social connectedness piece may hold the key to how volunteering eases depression for people like me.

My social anxiety skyrocketed after the pandemic. But volunteering offered a structured, time-limited way for me to get out of the house. The more I did it, the more comfortable I felt in my role and around other people.

Because I found hospice work so meaningful, I began volunteering every other week during the school year to help grieving children explore the death of a parent through therapeutic play.

There, I bonded with a group of volunteers. We checked in with each other before and after each session, away from the kids.

Dana Basch, a licensed counselor and community grief specialist with Agrace Grief Support Center in Madison, Wis., where I volunteer, told me there is something “sacred” about coming together for a common purpose as personal as grief.

“There’s value in being able to help somebody else who’s going through something that you went through,” said Basch. “That absolutely helps volunteers heal.”

I also found that helping kids use play to work through their feelings around death can be joyful and, well, fun.

“There’s this idea that grieving kids are sitting around a circle crying,” said Jessie Shiveler, Agrace’s community grief manager. “People don’t understand that there’s laughter here, there’s smiles, there’s a connection.”

I developed a greater sense of peace and purpose after several months of face-to-face volunteering for two to four hours a week, which lines up with the suggestion of two hours a week from Post.

A caveat is that acting altruistically probably won’t trigger the same reward pathways for someone who feels forced into it. And it’s possible to overdo it.

“If any volunteering or care behavior gets to be too much, it can become a stressor in itself,” said Creaven.

According to Post, volunteering for health is kind of like exercise. It doesn’t work for everyone, but most people who do it find a benefit.

“I don’t think there are any guarantees on happiness advice,” Post said. “But I think that you’re better in the long run if you’re reasonably generous and kind.”

Complete Article ↪HERE↩!

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Does a Person Know When They Are Dying?

By Angela Morrow, RN

Family members and friends of a dying loved one may wonder if the person knows they are dying. They may worry that if their loved one doesn’t know death is near, telling them might dash any hope and even make them die sooner. Here’s how to recognize the signs that someone is close to dying and why it is ok to acknowledge it.

The Important Tasks of Dying

It is natural to want to shield the ones we love from pain and sorrow. Trying to protect a loved one from the truth about their condition may initially seem like a good idea, but in fact withholding that information can lead to resentment and disappointment.

When a person knows they are dying, they have the opportunity to do five important things:1

  1. Apologize for past mistakes
  2. Forgive others for their mistakes
  3. Thank those people who matter most
  4. Say “I love you” to those they love
  5. Say goodbye

Without the opportunity to do these valuable things, your loved one could die with unfinished business.

Hope at the End of Life

It may seem like a dying person can’t possibly feel hopeful, but dying people do retain an amazing capacity to hope. While they may have stopped hoping for a cure or for a long life, they may still hope to mend relationships with loved ones and to die peacefully.

Keeping the truth about dying from the one who is nearing death could rob them of the chance to reflect on their lives and fulfill their final wishes.

Signs That Death Is Near

As someone nears the end of life, they usually experience certain specific physical and mental changes, including:2

  • Fatigue or sleepiness
  • Refusing food and drink
  • Mental confusion or reduced alertness
  • Anxiety
  • Shortness of breath or slowed or abnormal breathing
  • Hands, arms, feet, and legs that are cool to the touch

At the very end, the eyes may look glassy and the person may breathe noisily, making a gurgling sound known as a “death rattle.”

Awareness May Linger

It isn’t clear how long a person who is dying retains awareness of what is going on around them, but research suggests that some degree of awareness may remain even after the person slips from unconsciousness.

A 2014 study looked at 2,060 patients from 15 hospitals in the United Kingdom, the United States, and Austria who had been given CPR after going into cardiac arrest (in which the heart stops completely). Of those who survived, 140 were surveyed about their near-death experiences. Thirty-nine percent reported feeling some kind of awareness before their heart was restarted, but did not have an explicit recall of events.3

Often, people will lapse into a coma before they die—a deep state of unconsciousness and unresponsiveness. People in a coma may still hear people talking even when they can no longer respond. Because of this, the Hospice Foundation of America suggests that caregivers, family, and physicians should behave as if the dying person is aware of what is going on and is able to hear and understand voices.2

A 2020 study that investigated hearing in palliative care patients who were close to death provides evidence that some people may still be able to hear while in an unresponsive state. Electroencephalography (EEG) was used to measure the dying brain’s response to sound. The findings suggest that telling a person you love them in their final moments may register with them.4

They Know They’re Dying

Dying is a natural process that the body has to work at. Just as a woman in labor knows a baby is coming, a dying person may instinctively know death is near. Even if your loved one doesn’t discuss their death, they most likely know it is coming.

In some cases, the person comes from a culture or a family in which death is simply not discussed. Furthermore, your loved one may sense that others feel uncomfortable recognizing the dying process so they don’t want to bring it up.

Death can then become the elephant in the room. Everyone knows it’s there but no one will acknowledge it. Family discussions may be awkward and superficial and never reach an intimate level. In this case, the important work of mending and completing relationships may not happen.

Talking About Dying

Talking about death is rarely easy. Many of us feel uncomfortable even saying the words “death” or “dying.” Talking about it with a loved one who has been diagnosed with a terminal illness can be especially awkward.5

First, remember that you are talking to someone who is still living, and that talking about memories and shared experiences honors the dying person’s life. Experiencing sadness with the loved one is appropriate; that’s part of life, too.

If necessary, a therapist or hospice social worker with experience in this area can make these conversations easier.

Frequently Asked Questions

What does dying feel like?

While we can observe another person’s death and perhaps imagine what it feels like for them, there is no way to know what it actually feels like to die.

What are the signs that death is near?

Someone who is very close to death will likely refuse food and water. Their breathing and heart rates will slow and/or be abnormal and their hands, arms, feet, or legs may be cool to the touch. They may also be agitated, anxious, and confused.

What should I say to someone who is dying?

There is no right or wrong thing to say to a dying person. You may want to share memories or make sure your loved one knows you love them. A therapist or hospice social worker can help make conversations about dying easier.

What are the five stages of death and dying?

According to one widely-accepted theory, originally conceived of by psychiatrist Elisabeth Kubler-Ross in 1969, the five stages of coping with realizing you are going to die are denial, anger, bargaining, depression, and acceptance.6

Some Final Thoughts

As uncomfortable as it can be to acknowledge openly that a person you love is dying, it’s important to realize that the person is most likely aware that they are dying, so you don’t have to struggle with “breaking the news.” In fact, dying people often appreciate being able to use the time they have left to tell people they love them and mend certain relationships if necessary.

Complete Article ↪HERE↩!

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When disease ravaged her body, Sara was crystal clear about what she wanted.

— Here’s what she chose to do

By Nina Rota

A man from the home care agency calls on a Monday morning. “The caregivers are complaining. It’s too hard to transport Sara, to move her from the bed to the wheelchair and onto the stairlift. You need a lift or some other assistive device.”

A rush of sadness settles into my body. The end has arrived. “Sara is leaving on Friday,” I say, “Can we hold out till then?”

“Oh,” he says, and pauses, “I’m so sorry to hear this.”

My partner, Sara Flint Greenberg, was nearing the end of her nine-month journey through amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease, and she would take her life on Friday.

There is nothing more we could do. Her body has been ravaged by this devastating disease and she has been crystal clear, from the beginning, that she would leave when she can no longer take care of herself.

There are steps to the end of this journey.

Later that Monday morning, Sara speaks with a doctor, answering some required questions. Does she have less than six months to live? Is she mentally capable of making the decision to end her life? Can she self-administer the medication? Luckily, the session is short. Sara spends much of her day on a machine which helps her to breathe. Too much talking leaves her gasping.

On Wednesday morning Sara speaks with a second doctor who agrees that she qualifies to receive medications that assist in dying under the requirements of the California End of Life Option Act. The medication that will allow Sara to leave will be ready on Friday.

On Wednesday afternoon we celebrate our wedding. Sara and I marry in the late November light of our living room. I am not strongly attached to marriage, but as the day of Sara’s passing drew closer, I felt an overwhelming need to express the beauty of our love in ceremony.

The temporary chuppah is held over our heads by Sara’s sons Aaron and Jacob, our friend Audrey and a caregiver. We have found an independent rabbi to marry us because I am not Jewish. The rabbi is adorable in her Converse sneakers, covered with stars, as she takes us through this bittersweet ceremony. The ceremony is short because Sara is exhausted. It is her last gift to us, her family.

On Friday morning, our friend Margaret arrives from New York, kisses Sara on the cheek and tells her she loves her. It is all anyone can do. Audrey is in the kitchen. She has been with us for days, helping us through.

Later in the morning, a rabbi from our synagogue arrives to help us say goodbye to Sara. Margaret and Audrey go downstairs to wait. They sit, mostly silent and sometimes hold hands. The room feels heavy. They can hear Sara breathing above them, but they know she will not be there for long. It is one of the most reverent acts of love: to witness in silence the death of another.

At noon, Sara takes a pill to prevent nausea and vomiting when she takes the medication that will end her life. I sit beside her on the couch, Aaron is at her feet and Jacob is across from her. The rabbi is just beyond our circle as he begins to guide us through our final words. Everything is said on the edge of tears. We listen closely to hear our soft voices.

Sara regrets, deeply, that she will never see her grandchildren. She will not see her sons grow further into their lives or settle down with partners and start families. She gathers her breath and questions them closely because this is her last chance. She wants to know what their futures looks like because she will not be there.

There are apologies because anything left to be said has to be said. Death demands it. We make promises because who would say no? Sara would do anything for her sons and I promise to do the same. We celebrate Sara’s bravery. She left a longtime marriage, late in life, and jumped into love with me. And the bravery she shows today in making this choice.

The rabbi asks Sara where we can find her after she’s gone. “Walking in these hills,” she says, of the land surrounding our home where she once walked every day. She is now struggling to breathe and is silent. We are left with silence and the presence of love. We will carry this love everywhere we go.

It is almost an hour after Sara took the anti-nausea pill. She must take the medication now or wait for another day. The hospice nurse has not yet arrived. We call our hospice provider. They tell us to mix the medication with apple juice and give Sara sorbet because the taste can burn her throat. Sara reaches for the medication with both hands. She is ready to leave.

As the medication moves through her body, she prays in Hebrew: “HaShem Sheli, HaShem Sheli, ya’azor li” (“My God, my God, help me”). She recites the Shema, a centerpiece of prayer services in Judaism. As she draws closer to leaving, her last words are “Thank you, thank you,” a beautiful sentiment and a sign, I hope, that she is at peace.

Sara slides slowly down the couch, her cheek resting against the back of my hand. I feel life in her body, but after half an hour I am not sure. The hospice nurse has arrived. I ask him if she has passed. No, she is still here. Another half hour and I ask again. He checks her pulse. She has left.

My beautiful Sara is gone.

Complete Article ↪HERE↩!

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How to talk to people who are dying

— Some tips on being good company to someone who is facing their mortality.

By Gabi Lardies

One day everyone you think is cool, fun and lovely will be on their deathbed. The older they are the more likely they’ll be sick, probably with cancer, and know death is coming. If they’ve beaten you to the end, it’s likely that apart from being sad, your guts will be twisted with dread and fear, and at least some of it will manifest as social anxiety. It’s easy to fret that our trivial chit-chat about TV, accidentally stepping in dog poop, the price of cheese and whatever sports world cup is on may not cut it. Then again, straying from light topics is scary, because you might say something wrong or offensive.

“Sometimes you see friendships disappear, because I guess people get nervous, they don’t know what to say,” says Amanda Evans, a palliative care specialist. Yet she’s also seen beautiful conversations happen at people’s bedsides. “Don’t be afraid to go and see people when they’re going through this.”

Sandra*, who is preparing to eat her share of asparagus rolls and say her farewells at a celebrating life party (or living funeral), says she is looking forward to all the conversations she will have there.

Talking to people who are dying is not something most of us do often, but it doesn’t have to be scary, even when Sandra threatens to haunt you. How can we be good company to people who don’t have much time left?

Remember they are still alive

The image I have in my head of someone on their deathbed is straight off a cheap stock image website. You can barely see a human because they’re almost entirely covered up by sheets and tubes. It isn’t very flattering or accurate, just this week I’ve met a dying person who works and enjoys motorcycle riding, and another organising a party.

“Their body may be unwell, but they are the same person inside. Talk with them as you always have,” says Sandra. It seems she continues to be darkly hilarious, she says she’s been joking about alternative ways to dispose of her body once she dies.

“Just because they’re dying doesn’t mean they have a different personality”, agrees Evans. “This is the person that you’re friends with, this is the person that you care about. If they were an asshole they will still be an asshole.” She laughs, which is very much allowed when you’re around death. I’m beginning to wonder if I’m outing myself as being so afraid of death, I’ve forgotten people who are dying are, well, people. “Sometimes you do need courage to walk through the door,” says Evans, “but when you’re there, you realise that it’s actually OK.”

Trivial chit chat

When I ask Sandra if she enjoys chit-chat about ordinary everyday things, her response is quick. “Abso FKN lutley! That is 90% of what we talk about.”

Talk about death

Catherine D’Souza, who began specialising in palliative care in 2009, says even she is sometimes surprised by how open her patients are about death. “The majority absolutely welcome an open and honest discussion,” she says. In palliative care, you learn that “death is comfortable, calm and peaceful for the majority of people. It doesn’t have to be a time of suffering and despair.”

Still, one’s own death can be a lot to process. “Some people like to talk over things multiple times. They will talk about dying every day, that’s their choice. Some people don’t want to talk about it so much. They’ve had that conversation, an honest conversation, and then they feel like that’s enough,” says D’Souza.

The topic of death may need to be broached differently with children. Evans is one of only three paediatric palliative care specialists in the country, currently caring for children who are dying, through Rei Kōtuku. Evans asks if they feel like their body is changing, to which they usually say yes. Then, she asks what they think is happening. “They might turn to me and say, ‘I’m dying’.” In her experience, children aren’t as scared of dying as people might assume.

Adults often avoid the topic because they try to protect children, but “if no one’s talking about it, then it makes them feel more isolated, and more lonely and more anxious and fearful.” Evans has found that what children who are dying are most afraid of is being without their parents, so they need reassurance. “I spend time with the parents and tell them to keep saying to the child that they’re not going to be alone.”

Don’t feel sorry for them

Anna Cruse, motorcycle rider, acrobat, martial arts enthusiast and Addams Family lover has a terminal cancer diagnosis. Her cancer is not one which is causing her a lot of pain, so she is enjoying life. “I do not consider myself to be a victim. And I really really do not like it when people treat me like one,” says Cruse. Sometimes she feels people are tempted to think of her as a fragile “patient” when she tells them about her diagnosis, but “most people who know me, they know that I can’t be treated like I’m soft or delicate.”

Cruse is careful to point out she’s not a “representative of the whole dying community”. She says, “if it’s the worst pain that anyone’s ever experienced in their life, it’s going to be a lot different for them.”

By the same token, Cruse doesn’t appreciate false positivity. Sometimes people say things like “you got this,” and she thinks, “Well, yeah, I’m gonna die. This is not a battle which I am going to win.”

Evans says it’s important to remember death is not something to be “fixed”. “People don’t have to come and make it better, because there’s nothing to make better”.

HEIDELBERG, GERMANY - MARCH 30: In this photo illustration a Old man has a family photo in his hands on March 30, 2022 in Heidelberg, Germany. (Photo Illustration by Ute Grabowsky/Getty Images)
Photos can be useful prompts

Happy memories

Sandra says the conversations she has most been enjoying recently with her sons have been “laughing together about the funny things that have happened in our lives together.” Her sons have sometimes opened these conversations by asking her, “Tell me about xyz again please Mum.

Annie Meredith, an end of life doula, has some similar openers. She asks people what brings them joy in life, what’s important to them, who are their significant people and places, and asks them to think of a time when they felt most alive (not all at once). Then, she always has a couple of questions up her sleeve to help someone keep digging into their memories – Can you tell me a bit more about that? How did that make you feel?

Have some fun and whiskey

“People don’t want to be miserable the whole time. When they’re dying, they want moments of joy, they want to enjoy the remaining life that they have left,” says D’Souza, who has seen some beautiful moments in palliative care wards.

“I remember when an elderly chap was dying, all of his brothers, uncles, sons gathered around the bedside, and they all shared a glass of whiskey together and toasted him as he was dying. That was rather moving because it was his favourite drink,” she says. Others put on favourite music, or sing, to celebrate the dying person’s life.

“I hope I’m laughing until my last breath,” says Cruse, “I love to laugh. I love to have these funny things going on. Having a clown near would be fantastic. Strippers, too. And whiskey – it’s classy.”

Some of Sandra’s friends have been cracking her up by saying things like “get well soon”. Not everyone’s sense of humour is this dark, but you “gotta laugh or cry,” says Sandra. She’d rather laugh.

Ask if they are at peace

“It is quite a weird thing to say out loud sometimes, but actually when you ask it, because it’s quite vague – peace can mean different things for different people – they bring up things that are important to them,” says Evans.

It’s the type of contemplative question which might get you weird looks if you were to ask it at a friday night barbecue, or a cringe on a first date, but next to death, it’s a gentle probe to look back on life. The question could also bring up feelings of unfinished business, which, if they’re wanting to talk through them, could be juicy.

Say the wrong thing

“People always do and say silly things. It’s okay. You can have a laugh about it. You don’t have to be perfect,” says Evans. Making an egg of yourself is just life, but it is different from pressing someone to talk about things they really don’t want to. If in doubt, ask.

Tell them that you love them

This is what Sandra thinks is most important.

Its you or the op shop

Ask if you can have that dress

In Evans’ experience, this shameless honesty elicited laughter from the person dying. “It was a question that they would expect to come out of that person’s mouth, it was just that type of relationship,” she said. I’m taking this to mean that by the bedside, we don’t have to turn into angels, we can be ourselves.

On the topic of inheriting things, don’t put practical questions off the table. Asking if someone has their affairs in order isn’t necessarily in bad taste. Nor is asking them to write down all their passwords and knowing what they want done with their social media accounts. And have they planned their funeral? You can offer to help! A fun activity to do together!

Nothing at all

“Be comfortable to sit with silence, sometimes silence gives them more time to think,” says Meredith. She stresses that listening is important, and so shutting up is essential. Quiet can give the dying person a chance to bring up what’s on their mind, or for them to simply feel comforted by your radiant presence.

Evans too thinks your presence is enough, “Come and just be, you don’t need to say anything. You could just sit there and be on your phone, but being there can make the person feel less alone. There’s a lot of comfort from someone just sitting here.”

For Evans, D’Souza and Meredith, who have dedicated their careers to helping people who are dying, spending time in their company is not sad or scary – it’s a privilege. “I think some of the most beautiful conversations that I can ever have are with someone nearing the end of their life,” says Meredith, “these conversations tend to be more honest, real and authentic.”

Complete Article ↪HERE↩!

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A Moment in Time

— “Explaining Death to a Toddler”

Walking by a tree the other day, I noticed one brown leaf among the flourishing green. I wondered, “Why is it that this specific one died?”

By Rabbi Zach Shapiro

Dear all,

Walking by a tree the other day, I noticed one brown leaf among the flourishing green. I wondered, “Why is it that this specific one died?”

The question weighed heavily, as Ron and I are preparing to explain the death of a loved one to our toddler children.  We know there will be many questions:

”Why?”

”Why now?”

”What does death mean?”

”Will something happen to you?”

”If so, who will take care of me?”

While the conversation will be difficult, we also know it needs to be straight-forward. When talking about death, it’s really important to keep the following in mind:

  1. Don’t use euphemisms. (No one “passed away” or “went to sleep.” The person died.”)
  2. It’s ok to express your own emotions and not hide them.
  3. Make sure you answer the question the child is actually asking. Be brief and simple about it.
  4. It’s ok to share: “a body stopped working” and: “it doesn’t move or eat or play anymore.” If the child asks if the body is like a toy that needs a new battery, explain that living things can’t get new batteries like toys do.
  5. Your child may or may not ask questions. Some questions may unfold over time.

Also – remember this. Every death is different. Sharing the death of an older adult is very different experience than sharing the death of a young person. And different children will respond in different ways.

Mind you, it’s one thing to offer this advice in my moment in time. It’s another to sit and have the conversation with our children. We will rehearse it. We will prepare our answers. But we will also ensure that we are not so over-prepared that we come off as staged.

It’s a delicate balance. But so is life.

With love and shalom.

Rabbi Zach Shapiro

Complete Article ↪HERE↩!