As a culture, Americans—more often than not—have a tendency to avoid thinking and talking about death and dying. Yet pondering our mortality can have a profound impact on our lives.
Our health care system is set up with a single, default pathway for all medical care: aggressive, invasive treatment, no matter how old or how sick you are. For some people, this makes perfect sense and can save lives. For others, a different approach to care is required. But it starts with having a relationship with our own mortality and reflecting on what matters most in our own lives. I have seen far too many people suffer by receiving treatment that is not in line with their goals and values.
In our modern era of fast-paced life, constant digital connectedness, and a culture striving to be “doing” all the time, it’s easy to get caught up in things that don’t matter. If we can reflect on the bigger picture in life, the preciousness of each moment, we can more easily let go of things that aren’t important. I believe there are three key benefits to thinking about our mortality at least once a day:
1. You’ll be motivated to leave a legacy.
Ask yourself, what do you want to leave behind? The idea of legacy awareness is a way to connect with our own mortality as it relates to our work, loved ones, and creative endeavors. If we think about legacy as a means to transcend death, we may be more likely to invest in our health and personal development throughout life.
Artists, for example, live on long after they’re gone thanks to their creative legacy. That’s just one way of forming a legacy. Whether you are creating art, giving back to your community, raising a family, or making a positive impact on the lives of others, these are all powerful ways to leave a legacy for generations to come.
2. Life will instantly feel more precious.
Too much of a good thing decreases its value. Life is precious. It’s also temporary. Even when you’re young and healthy, your life could end unexpectedly at any time. Recognizing that life is fleeting helps us find joy and meaning in the small things—sunset and sunrise, a smile on your child’s face, a tree in the park—that sometimes get lost in the day-to-day. The people in your life can take on a new value because we realize that their lives are also temporary.
3. You’ll learn not to sweat the small stuff.
Thinking about our mortality can serve as inspiration to think more holistically about what it means to live our best life. In other words, it can move us to exercise and eat well because we only get one body. And at the same time, it’s an invaluable reminder that we only get one life, and we better enjoy it. So many of us are on a quest to find balance in our lives and define our own priorities. Remembering that we have this one life to live can help when weighing where we want to put our energy and attention.
Countless psychological studies have shown that a recognition of our own eventual ending can allow us to live a richer life—one filled with gratitude, presence of mind, and happiness. As you go through the checklist of factors contributing to your overall well-being—getting quality sleep, eating healthy food, exercising regularly, and sustaining meaningful relationships—make sure that forming a relationship with your own mortality is high on the list.
No one knew how important this practice was better than Apple’s Steve Jobs who, during his 2005 commencement speech at Stanford University, said, “Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important.”
If contemplating your mortality triggers fear, consider this.
Does thinking about our own death trigger fear? According to the 2017 Survey of American Fears conducted by Chapman University, 20.3% of Americans are “afraid” or “very afraid” of dying. While for some, fear of death is healthy as it makes us more cautious (such as wearing seat belts and minimizing high-risk behaviors), some people may also have an unhealthy fear of dying, which interferes with their daily life.
Psychologist and spirituality expert Stephen Taylor looked at those who lost loved ones, and many tend to have a more accepting attitude toward death. This may result from “post-traumatic growth,” or personal growth from trauma. Others suggest that much of our fear of death stems from not wanting to lose the things we’ve built up (i.e., relationships, possessions, or status). By letting go (even a little) of fierce attachments, it can allow for valuable shifts in perspective and benefits to our well-being.
My friend and colleague, B.J. Miller, M.D., puts this in a different light. “Death is not at odds with living. You can’t get one without the other.” Whether we like it or not, death is always present. Connecting to the fact that life is defined by the fact that it will end one day will allow you to live more fully, experience deeper relationships, and provide new meaning to your days.
Next time you have the opportunity to reflect on your mortality, think about how it might enrich your life today.
Dying is a social not a medical event. We must accept it as part of life’s narrative
“Nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful.”
By June Shannon
“How people die lives on in the memory of those who live on.” – Dame Cicely Saunders,, founder of the modern hospice movement.
Do you know what dying looks like? Do you want to know?
A lot of people are afraid of death and dying, yet like birth, it is one of life’s most natural processes. We don’t talk about it, but it happens to us all, and if we are very lucky, it occurs at the end of a long and happy life.
For many who fear death it is perhaps the fear of the unknown that is most terrifying, and it is that fear that Dr Kathryn Mannix, former palliative care physician, author and full-time campaigner for better public understanding of dying, is working to ease by encouraging us all to “narrate dying”.
Speaking to The Irish Times, Dr Mannix said that after 30 years in palliative care she found she was having the same conversations with unprepared families and terrified people with terminal illnesses, whose image of dying came only from television and films which did not reflect reality. She said people generally, had no idea what the “normal, relatively predictable and usually, fairly comfortable process dying is actually like”.
She recalled meeting the adult retired sons of a father in his late 90s who was dying and none of them knew what their father’s wishes were. She described them as “panic-stricken” when asked how or where their father wished to die. A number of the sons who were in their 70s, confessed that their father had in the past tried to share his wishes for the end of his life with his sons, but they refused to discuss it and jokingly admonished him for being morbid.
“This made me realise that we can’t keep doing this to our families,” Dr Mannix said. “This is a national public health problem. In fact, it is an international public health problem that people in parts of the world that have highly developed and sophisticated and accessible to everybody medicine, have forgotten what normal dying looks like.”
Planning for death
According to Dr Mannix, nowadays the tendency in modern health systems to call an ambulance to bring everyone who is very sick and may die, to a hospital full of technology that might just save their lives, which, she acknowledged was wonderful if it worked, meant that nobody knows what normal death looks like. “So now nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful. And actually, if they were less afraid, they would be able to sit down and have those conversations and plan better and die better,” she said.
Instead of putting off what may seem like a difficult conversation until it is too late, Dr Mannix suggested that we should all know more about dying and start planning for our own deaths while we are well. “We should all be thinking about how we would like our dying to be, where, who would be our companions,” she said.
She added that these plans can be tweaked with time and suggested that we should be having these conversations around any birthday that falls on the five times table after the age of 50.
Dr Mannix explained that like birth, which starts with labour pains and progresses through a predictable sequence of events, the process of dying also involves an anticipated sequence of events that are very similar from one person to the next, irrespective of what they are dying from.
“Just like every woman who has ever given birth to a baby feels she has had a particular unique experience, every midwife who has attended that woman has been through the same process that she always has. Because it’s the individual who makes it individual, it is not the process . . . every person who is dying is having their own unique, individual, personal family experience but those of us who are caring for them are seeing the same sequence of events time after time,” she said.
Steps of process
When Dr Mannix meets a patient who expresses a fear of being in pain or distressed when they die, she gently asks if they would like her to explain the process of dying to them and tells them that if they find it too distressing, they can ask her to stop at any time.
Nobody has ever asked Dr Mannix to stop.
She said that when people learn what really happens when we die, they don’t find it terrifying, on the contrary they see it as compelling and comforting.
“I tell somebody and then there is a long pause, usually when I dry my eyes . . . and then they say ‘That’s not what I was expecting, can you tell my wife that? Can you tell my dad that, can you tell my kids that?’ and, ‘That’s wonderful I want my family to know it will be a comfort’.”
By understanding the dying process, grieving families will take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them.
Dr Mannix explained that at the end of our lives we simply get more tired and need to sleep more.
As the illness state advances and death becomes closer, the periods of being awake get less and the periods of sleep get longer. Eventually, she said there comes a time when a patient is so deeply unconscious that they cannot be woken. When they do wake up later on, they report that they had a good sleep. Therefore, Dr Mannix said we know that being unconscious is not unpleasant for people.
She explained that when a person is unconscious, medical staff can continue to give them their regular medication to help ease the symptoms of their disease, such as breathlessness or pain, via an injection or syringe pump rather than in tablet form.
“They sleep more, they are awake less. We change the route of the medicines, but it isn’t the medicines making people sleep, it’s the illness, it’s the process of dying and at the very end of people’s lives they lapse into unconsciousness,” she said.
Unconscious state
Dr Mannix explained that this unconsciousness doesn’t feel like falling asleep and the person is not aware that it is happening.
Once the person is completely unconscious the only part of the brain that still functions is that which drives breathing which then becomes completely automatic.
She explained that at this point a person’s breathing alternates between cycles of deep and shallow breathing.
She also pointed out that in this deeply unconscious state, the dying person is not aware of their vocal cords. However, when they breathe out through their vocal cords it can make a noise and family members may fear that this is the sound of their loved one groaning or sighing in distress.
The so-called “death rattle” people hear can also be explained. This too is all part of the dying process and occurs because the dying person is so unconscious that they can no longer cough or swallow to clear normal secretions like saliva or mucus from the back of their throat.
“We would normally cough or splutter or gag if anything is touching the back of our throat because it is a reflex to preserve our lives. Once you are deeply unconscious, all of those sensations are just lost and we tolerate that . . . because you are breathing, the air is going in and out, it makes that funny clicking noise that you would normally never hear in any other circumstances because, in any other circumstances people would clear their throat,” she explained.
Dr Mannix said it was important to remind families that this was automatic breathing because when someone is deeply unconscious, they cannot feel distress.
“As time goes by the breathing gets slower, there are pauses and then eventually there will be an outbreath which doesn’t seem any different to any other out breath, but there just isn’t an inbreath afterwards. It’s as gentle as that.”
“You can’t stop death from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying.”
According to Dr Mannix, 100 years ago we would never have spoken about childbirth in public, but we would have all known about dying and she believes it is time for lay people to reclaim death and dying.
Death bed
While Dr Mannix acknowledged that GPs, community nurses and palliative care specialists would always have a role in the dying process, to help ease symptoms and ensure that the person is as comfortable as possible, she said that dying was not a medical matter but rather a social one.
Therefore, she was appealing to medicine to “give dying back to everyone”. “People will only understand what is happening around the death bed if we narrate it,” she said.
By helping grieving families understand the dying process, this will allow them to take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them, Dr Mannix said.
“You can’t stop it from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying. We can give people the knowledge that they need to be with people who are dying.”
Dr Mannix’s book With the End in Mind: Dying, Death and Wisdom in an Age of Denial was shortlisted for the 2018 Wellcome Book Prize and she is one of a number of speakers due to address the annual dotMD conference which takes place in Galway in September.
Hailed as a festival of medical curiosity and known by some as the Electric Picnic of medical conferences, dotMD is a celebration of the heart of medicine. dotMD is curated by Dr Ronan Kavanagh, consultant rheumatologist; Dr Muiris Houston, GP and medical journalist and writer; and Dr Alan Coss, consultant gastroenterologist.
The purpose of this highly popular event which, for the first time in its seven-year history is taking place outside Dublin, is to expose doctors, medical students and other healthcare professionals to the ideas taking place at the interface between medicine, the humanities and technology.
Themes included in this year’s two-day dotMD meeting in Galway on Friday, September 13th and Saturday, September 14th, include, jazz, death, art, stories and zombies.
When a hospice counselor is called to the bedside of a child who has just died, he leads the parents through a Buddhist ritual for cleaning the body. In the process, he guides them through the fires of grief, which burn away everything but love.
One day, in the middle of writing a foundation grant report, I got a call from a man I didn’t know. He explained that he was the father of a 7-year-old boy who had been very ill with cancer. Some people had told him that I might be able to help him out.
I said certainly, I would be willing to help the family through their grieving process. I made some suggestions about how I might be able to support when the time was right.
The man paused. It was clear that I didn’t understand yet what was happening. He practically whispered, “No, Jamie died a half hour ago. We’d like to keep our boy at home in his bed for a little while. Can you come over now?”
Suddenly, the situation wasn’t hypothetical; it was real and staring me in the face. I had never done anything like this before. Sure, I had sat at the bedsides of people who were dying, but I had not attended the death of a young child with two grieving parents in unimaginable pain. I honestly had no idea what to do, so I let my fear and confusion arise. How could I possibly know in advance what was needed?
I arrived at the house a short while later, where the dispirited parents greeted me. They showed me to the boy’s room. Walking in, I followed my natural inclination: I went over to Jamie’s bed, leaned down, and kissed him on the forehead to say hello. The parents broke into tears, because while they had cared for him with great love and attention, nobody had touched the boy since he had died. It wasn’t their fear of his corpse that kept them away; it was their fear of the grief that touching him might unleash.
I suggested that the parents begin washing the boy’s body— something we often did at Zen Hospice Project. Bathing the dead is an ancient ritual that crosses cultures and religions. Humans have been doing it for millennia. It demonstrates our respect for those who have passed, and it is an act that helps loved ones come to terms with the reality of their loss. I felt my role in this ritual was simple: to act with minimal interference and to bear witness.
The parents gathered sage, rosemary, lavender, and sweet rose petals from their garden. They moved very slowly as they put the herbs in warm water, then collected towels and washcloths. After a few moments of silence, the mother and father began to wash their little boy. They started at the back of Jamie’s head and then moved down his back. Sometimes they would stop and tell one another a story about their son. At other times, it all became too much for the father. He would go stare out the window to gather himself. The grief filling the room felt enormous, like an entire ocean crashing upon a single shore.
The mother examined and lovingly cared for each little scratch or bruise on her son’s body. When she got to Jamie’s toes, she counted them, as she had done on the day he was born. It was both gut-wrenching and extraordinarily beautiful to watch.
From time to time, she would look over at me as I sat quietly in the corner of the room, a beseeching question filling her eyes: “Will I be able to survive? Can I do this? Can any mother live through such loss?” I would nod in encouragement for her to continue at her own pace and hand her another washcloth, trusting the process. I felt confident that she would find healing by allowing herself to be in the midst of her suffering.
It took hours for the parents to wash their son. When the mother finally got to the face of her child, which she had saved for last, she embraced him with incredible tenderness, her eyes pure reflections of her love and sorrow. She had not only turned toward her suffering; she had entered into it completely. As she did, the fierce fire of her love began to melt the contraction of fear around her heart. It was such an intimate moment. There was no separation between mother and child. Perhaps it was like his birth, when they had the experience of being psychologically one.
After the bathing ritual was complete, the parents dressed Jamie in his favorite Mickey Mouse pajamas. His brothers and sister came into the room, making a mobile out of the model planes and other flying objects he had collected, and they hung it over his bed.
Each one of them had faced unbelievable pain. There was no more pretense or denial. They had been able to find some healing in each other’s care and perhaps in opening to the essential truth that death is an integral, natural part of life.
Can you imagine yourself living through what these parents did? “No,” many of you will say, “I cannot.” Losing a child is most people’s worst nightmare. I couldn’t endure it. I couldn’t bear it, you may think. But the hard truth is, terrible things happen in life that we can’t control, and somehow we do bear them. We bear witness to them. When we do so with the fullness of our bodies, minds, and hearts, often a loving action emerges.
And sometimes they act with enormous compassion toward others who have suffered similarly or who may yet in times to come.
One of the most stunning images of this that I can recall came after the major earthquake and tsunami disabled the Fukushima nuclear power plant in Japan. A photo in the newspaper revealed a dozen elderly Japanese men gathered humbly, lunch baskets in hand, standing in a line outside the plant’s gates. The reporter explained that they were offering to take the place of younger workers inside who were attempting to contain the radiation-contaminated plant. In total, more than five hundred seniors volunteered.
One of the group’s organizers said, “My generation, the old generation, promoted the nuclear plants. If we don’t take responsibility, who will? When we were younger, we never thought of death. But death becomes familiar as we get older. We have a feeling that death is waiting for us. This doesn’t mean I want to die. But we become less afraid of death as we get older.”
Suffering is our common ground. Trying to evade suffering by pretending that things are solid and permanent may give us a temporary sense of control. But this is a painful illusion, because life’s conditions are fleeting and impermanent.
We can make a different choice. We can interrupt our habits of resistance that harden us and leave us resentful and afraid. We can soften around our aversion.
We can see the way things actually are and act accordingly, with wise discernment and love.
The Thai meditation master Ajahn Chah once motioned to a glass at his side. “Do you see this glass?” he asked. “I love this glass. It holds the water admirably. When the sun shines on it, it reflects the light beautifully. When I tap it, it has a lovely ring. Yet for me, this glass is already broken. When the wind knocks it over or my elbow knocks it off the shelf and it falls to the ground and shatters, I say, ‘Of course.’ But when I understand that this glass is already broken, every minute with it is precious.”
After being with Jamie’s parents as they bathed their son, I returned home, and I held my own child very close. Gabe was also 7 years old at the time. I saw clearly how precious he is to me, what a joy he is to have in my life. While I felt devastated by what I had witnessed, I also was able to appreciate the beauty in it.
What a doctor wishes people knew about living, dying well
By A. Pawlowski
Here’s what really matters at the end of life and how to avoid the biggest regrets.
Life is precious because it ends one day, but death is not the enemy. The enemy is a wasted life.
It’s a message Dr. BJ Miller, a hospice and palliative care specialist in San Francisco, wants people to remember as they come to terms with their mortality. Miller’s own brush with death as a college student left him a triple amputee and an advocate for a dignified end of life.
“There’s no guarantee for tomorrow, ever,” Miller told TODAY.
“Watching my patients die helps me think about what’s important to me in my life. So when it’s my time, hopefully I’ll have fewer regrets and, along the way, I hope to have a more meaningful life thanks to their lessons.”
Avoid common and painful regrets at the end of life
Miller: There’s usually regret about having been unkind and selfish. It’s shame around having ever been a jerk to anybody, including to oneself.
One of the things dying teaches you is life goes on outside of you, too. You are a grain of sand among a gazillion grains of sand and the sooner you can delight in life outside of yourself, the better you’ll be able to handle your own death and the kinder, more forgiving you’ll be.
Life is just hard and there’s only so much we can get done in it. Forgiveness ends up being a huge theme. If you find yourself in a petty argument that kept you from re-establishing contact with someone you once loved, those get revealed to be practically almost silly at the end of life and people often regret losing contact.
Participate in your life and your dying
Miller: This is your life. Sometimes patients tell me they got robbed or that this is a huge detour or some anomaly in their life. The reminder is: No, this is your life — this is it. And because time is precious, if you don’t engage with your life on a real level, you are squandering your time.
Be an active participant in your own life in every way, including your illness and your dying, because those are parts of your life — your life while you have it. You don’t need to control everything, just participate.
Remember what people at the end of life care about most
Miller: If someone is lucky enough to have a family or a group of friends who are nearby, one thing a dying person really wants to know is that their loved ones are going to be OK. That they’re going to keep living, keep trying and going to try to love themselves and the world. That’s a really powerful thing.
So as a loved one, one of the kindest things you can do for someone who is dying is to let them know you’re going to take care of yourself. That’s not a selfish thing; that’s something the dying person will often really long to hear.
Take comfort that many people have accepted the end
Miller: In most cases I’ve been involved with, by the time death rolls around, the dying person is often really done with this body, done with this life. And whether by force or by choice, acceptance often does come because the fact of dying becomes just so obvious, it’s just so clearly coming.
Dying is often harder in some ways on the people around the dying person — harder on the people who have to keep living.
Clean out the skeletons in your closet before the end
Miller: There’s a hygiene to the process of dying. You go through life and accumulate all this stuff and all that has to go away when you die. You can leave all this emotional and physical residue of stuff, or you can clean it up and by doing so, leave less of a mess for people who are going to live on.
It’s a cleaner grief, in a way, not complicated by finding old letters with secrets in them that can be a source of torture. If you clean up your life on the way out, it can feel wonderful, it can feel very true and it can be an extremely kind gift.
Keep hope going
Miller: I honestly believe that we as a species will do better if we come to terms with our mortality earlier in life. Get used to exercising hope within the framework of life being short and precious.
If my patients come to me and are losing hope, I’ll say “OK, let’s come to terms with the hope that’s being lost. Let’s grieve that, but now let’s find what we still can hope for.”
As long as you have another breath in you, you can hope for something.
As long as you have another breath in you, you can hope for something: Peace, comfort, the well-being of people you love. It’s always a matter of framing your hope.
Simple pleasures, rather than grand moments, are appreciated at the end of life
Miller: It may be simply going outside and feeling the sun on your skin. A shower can be magical, sunlight can be magical. Just delighting in the cool breeze on your face or the sound of laughter. Very basic primal stuff.
Think about what might happen after death
Miller: If you’re around folks who are taking their final breaths, you can see life going out of somebody. You can tell the body is just a shell, something is gone now. Where does that life go? Is there a soul? Is there a spirit?
I find a joy in not knowing. I know dying, but I don’t know death. My compromise is to embrace the mystery of it all.
In January, Kathy Brandt (right) was diagnosed with stage 3 ovarian clear cell carcinoma and learned she had mere months to live. She is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation.
Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.
Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.
“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”
Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.
For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.
After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.
“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.
The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.
In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.
“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.
During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:
“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”
A well-known hospice industry leader and consultant, Brandt spent three decades in the field and was most recently tapped to write and edit the latest version of clinical guidelines for quality palliative care.
The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.
“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.
Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.
“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.
Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.
“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”
Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.
In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”
Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.
“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”
A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.
I received news about a friend recently — his seizures have now collided into a diagnosis of glioblastoma. A strong and steady man, trustworthy through and through, reliable, and ever-so-devoted is suddenly facing a life-limiting illness. His life has forever changed; and, so has ours.
Most often we focus on all that the patient must deal with when tragedy strikes. Yet, those of us who care about this person find that with such news, the very nature of our relationship is impacted as well.
A talk with my mother some years ago illustrates how illness changes relationships. I was so touched when she finally asked me how I was doing. For months, we’d been laser-focused on her illnesses. The energy had been going her way; not much coming back around.
I remember first becoming aware of this phenomenon with my dear friend, Trish, at dusk in her living room in Solana Beach, California, the fading backlit light illuminating her. Terminally ill, she also finally asked me how I was. It felt so good to be able to share again as we always had done in the past!
I’m sure it was only because our beloved hospice doctor, Julie, had privately asked me how I was doing. I told her how much I already missed Trish — our deep friendship before her cancer seemed buried. She must’ve dropped a hint. I still cry 18 years later.
It’s no one’s fault. It’s the nature of leave taking — in this case via illness and death. Unbinding and separating from this physical plane demands its own attention. The sick and dying still care; their focus is just elsewhere.
Perhaps it’s a way for us who will remain to begin the adjustment process — while our loved one is still with us. Anticipatory grief.
What can we do during such disruptive and devastating times to help ourselves?
Feel
Feel the confusion, the hurt, the sadness, the shock. Plans smashed to smithereens, the future now unimaginable. Get the support you need to dive deeply into the depths of this darkness; denial and distraction, while offering immediate relief, ultimately only lengthen the process. Grief takes as long as it takes.
Care
Care for ourselves while we care for others. This type of news rocks us to our very core, shocks us and bombards our entire system — psychologically, socially, physically, emotionally, spiritually.
As hard as it might be to do, we must find a way to come up for air, again and again. Take that break, delegate to another, be extra mindful when stepping off curbs and while driving . . .
Gratitude
Gratitude in such circumstances — how? We can at least rally to remember to be grateful for the present, right here, right now. For what we are becoming and being called to do, perhaps in ways we could never have conceived of before.
Carlos Castaneda recommends, “When you need an answer, look over your left shoulder and ask your death.” BJ Miller, palliative care physician extraordinaire and patient himself, in a three-minute PBS brief, observes, “In a way, it’s harder to accept the death of another person than accept your own, especially when you love that person.”
Let’s live our lives alongside anticipatory grief and maximize love, however we can. By feeling our feelings, caring for ourselves and embracing gratitude, we can be of true value.
Amanda and Kaitlin Pettit with their mom and dad when they were young.
By Hillary Ollenberger
Imagine suffering everyday from severe pain and being told by physicians your condition will only get worse with time. What would you do? Would you start researching treatments, looking for anything to take away a little bit of the suffering? Or would you decide that ending your life is the only option?
Medical assistance in dying, also known as MAID, is a controversial topic. With medical assisted dying becoming legal across Canada in 2016, there are still many people who do not agree with it.
But Kaitlin Pettit, who lost her father Randy last year, believes that unless you have been in that position, you do not have the right to judge their decision of choosing medical assisted dying.
Randy Pettit, 60, from London, Ont., was suffering from a terminal illness caused by his diabetes that eventually led to heart, kidney, and liver failure. He passed away on Aug. 9th, 2018 with the help of MAID.
“Growing up, my dad was everything I could have wished for in a father,” says Kaitlin. She remembers how her father would always make her laugh and had the best sense of humour.
“He was an extremely hard worker and made sure my sister and I had everything we ever wanted,” she says.
She recalls some of her favourite memories of her dad, including family trips, watching the Toronto Maple Leaf games, and just sitting and chatting with him.
“My father had complications from diabetes,” says Kaitlin. “He always thought he would beat it, we all did. None of us knew how serious it was, but as time progressed, the reality kicked in.”
Randy chose MAID in June of 2018. According to Alberta Health Services, up until Feb. 28th, 2019, there had been a total of 628 MAID deaths in Alberta; this number continues to grow.
Randy Pettit in his Maple Leaf jersey.
“He had discussed it with my mom first before telling my sister and I,” says Kaitlin. “My father did consider other options before he decided he was going to do the medically assisted dying.”
According to the College of Family Physicians of Canada, Quebec became the first province in Canada to pass legislation to allow “medical aid in dying.” The act defines medical aid in dying as “administration by a physician of medications or substances to an end-of-life patient, at the patient’s request, in order to relieve their suffering by hastening death.”
Kaitlin says her father was initially going to pass away naturally. But his illness was spreading quickly to his organs, and he was suffering.
“At first we all had mixed feelings on his decision. Some days we supported him and other days we were hoping we’d wake up and this would all be a bad dream. As the time got closer and we watched him suffer day in and day out, we all began to put our feelings aside and realize what was in the best interest for him.”-Kaitlin Pettit
For a patient who wishes to receive MAID, there are many ethical deliberations that take place with the physician and patient before moving on to the next step.
Dr. Stefanie Green is a MAID provider who assesses patients and provides medical assisted dying in British Columbia. Green says that for a patient seeking MAID, there is a very robust process that takes place.
Green explains that the patient first needs to be the one to ask for the assisted death. The patient then completes a written form that states they requested the assisted death; this has to be witnessed by two independent people who will not benefit from the death or be someone who provides medical care to them.
After the written request is made and witnessed by others properly, there are then two different assessments that need to be done by two separate independent clinicians.
“So that can be either physicians or nurse practitioners, and those clinicians work separately with the patient to see if they’re medically and legally eligible for the care,” says Green. “Once they both agree separately that that’s the case, then the patient can go ahead and set a date to make a plan for an assisted death. It doesn’t mean they have to do it, but that they’re eligible and empowered to do so.”
Rather than calling it euthanasia, Green says that the proper term is MAID, medical assistance in dying.
“It encompasses two different terminologies. One is what’s technically known as assisted suicide, which is when the patient is given the medication and the patient then takes the medication from the clinician and self administers it,” says Green. “But voluntary euthanasia is when the doctor administers the medications themselves, usually through intravenous.”
Green says the vast majority of cases here in Canada, around 99 per cent, have been voluntary euthanasia with the doctor administering medications.
Green says MAID is not just about the patient being able to control their pain and symptoms.
“Most commonly it’s about a patient finding that they have no more meaning in their life and that they’re no longer able to have autonomous activity and find meaning or joy in their life the way that they used to due to their illness.”
Green explains that for the patient, it’s about independence and autonomy.
In order to be eligible for MAID, the patient must meet five specific criteria: they must be over the age of 18; eligible for funding under Canadian health care; suffering from a grievous and irremediable condition; the request for MAID must be voluntary; and their natural death must be in the foreseeable future.
When it comes to a patient choosing MAID, Green says that someone who is suffering from depression without any other symptoms is not eligible.
“In my opinion, a patient who has acute depression does not have the capacity to make this choice because their decision-making capacity is clouded by the mental health,” says Green. “So no, they could not go ahead. There is a set of criteria that must be met, and if they’re not met then the person who provides their care is liable to be prosecuted.”
In terms of individuals who are against MAID, Green says that from her experience, she sees very few people who disagree with this process. Of the 125 cases she has personally assisted, she can only think of a few where a family member was not in agreement with the patient.
“You can imagine that the people who go through this process with me, by definition, are suffering intolerably. What I do see is a lot of relief, and a lot of sadness that they’re going to lose a loved one.” -Dr. Green
Randy Pettit in the hospital.
Although Green is very passionate about her job, she admits it can be hard. Green says that it takes a lot of time to assess the patient, which also means spending a lot of time getting to know them.
“Quite honestly, I find this work incredibly rewarding,” says Green. “I find that the patients are very grateful for my help and the vast majority of the family members are as well.
So I feel like I’m helping people and I would never help anyone who I don’t believe meets all the criteria.”
Green says that she is comfortable with the work she does and believes she is offering a service for people that is needed and desired.
Although doctors like Green believe MAID is a good option for Canadians, many feel it is unethical and should be illegal.
Alex Schadenberg is the executive director of the Euthanasia Prevention Coalition. Running for over 20 years now, Schadenberg and his team deal with the issues of euthanasia in Canada as well as on an international level.
“I think by the name of the group, you can see I obviously believe that without a question, causing another person’s death, even if they ask for it, is not a good thing.” -Alex Schadenberg.
Schadenberg explains that according to the law, MAID gives power to doctors and nurse practitioners to cause death.
“Not too long ago in Canada, it was considered homicide,” says Schadenberg. “Because we’re not talking about assisted suicide in Canada. We’re talking about euthanasia, lethal injection.”
Schadenberg feels that MAID is a very dangerous concept.
“It’s not about the right to die on their own terms. That’s a misnomer from the beginning,” says Schadenberg. “It’s actually terminology that’s based on a lie. It’s a concept, someone else is killing you. You’ve requested it.”
Schadenberg says three recent reports came up from the Council of Canadian Academics regarding the expansion of euthanasia to children and people with psychiatric conditions.
This is something that is not new to Belgium. With medical assisted dying being legal since 2002, the country also allows medical assisted dying to children. According to the website My Death My Decision, since 2014, competent children can receive euthanasia if they are terminally ill and in great pain.
“This is a very bad concept to be expanding euthanasia to children or to people who have psychiatric conditions,” says Schadenberg. He believes there are a lot of grey areas when it comes to MAID, including Bill C-14, which was put in place on June 17th, 2016.
According to the Government of Canada’s Department of Justice, Bill C-14 allows physicians and nurse practitioners to provide assistance in dying to competent adults who meet the criteria.
Schadenberg feels that Bill C-14 is a sham.
“So what they did is they said Canadians wanted it to be for people with terminal conditions,” says Schadenberg. “So they put that section of the law as, your natural death must be reasonably foreseeable. What does that mean?”
Schadenberg believes that to justify Bill C-14 based on autonomy assumes the patient is not going through great existential, psychological distress.
Dying With Dignity, on the other hand, states that, “although some clinicians interpreted the ‘reasonably foreseeable’ rule to mean a person must be terminally ill, the government specifically stated that that isn’t the case.”
“Caring not Killing” is Schadenberg’s main goal out of all of this. He believes society would be happier if we had good care in place of medically assisted death.
“I don’t think you should ever in society give the power over life and death with somebody else,” says Schadenberg.
Schadenberg is not the only one opposed to MAID. Faith-based hospitals have the right to refuse assisted dying to their patients.
After trying to get into contact with a nurse who works at a faith-based hospital, Leah Janzen, the director of communication from Covenant Health provided a link to their website for answers.
Their policy from CovenantHealth.ca says that:
“While Covenant Health personnel shall neither unnecessarily prolong nor hasten death, the organization nevertheless reaffirms its commitment to provide quality palliative/hospice and end-of-life care, promoting compassionate support for persons in our care and their families.”
Although Covenant Health disagrees with MAID, they still want to give support to their patients who are experiencing any pain or suffering.
They say their goal of care in faith-based hospitals is to reduce suffering and they are “prohibited from participating in any actions of commission or omission that are directly intended to cause death through the deliberate prescribing or administration of a lethal agent.”
Covenant Health could be a good option for patients who are on the fence with MAID but still want to receive support.
But just because someone chooses MAID, does not mean they are necessarily without beliefs or religion.
Kaitlin Pettit says her father was a religious man that prayed a lot.
“My mom’s minister came to our house and visited/prayed with him two days before he passed,” she says.
For her and her family, a place like Covenant Health was not an option.
With his complications from diabetes and his pain increasing, they knew MAID was the right choice.
“He refused to go to hospice and wanted to go on his own terms” she says.
During Randy Pettit’s final days at home, he had nurses and family members check in on him to make sure he was comfortable.
“I know his fight is now over and he is pain-free and that was my only wish for him,” says Kaitlin. “My dad had the privilege to stay at home thanks to his medical team up until the day of his procedure.”
Randy Pettit surrounded by family for a final goodbye.
When it was time for Randy to go to the hospital, the paramedics carried him down the stairs and let him sit outside in the sun for 20 minutes; his illness had prevented him from being out of the house for over a year.
“I will never forget that day — we all arrived in trauma, in Maple Leaf jerseys. We had one last drink to cheers what a great father he has been,” says Kaitlin. “It was quite the send-off and I know he was at peace with his decision.”
“As we all said our goodbyes, he looked at us and said, ‘I hope one day you will all understand why I had to do what I am doing.’”
The last thing Kaitlin said to her father was she loved him and was proud of how brave he was.
