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.”
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.
When I ask Matthew Cullen to share one of his favorite experiences volunteering at the Joan Nicole Prince Home, his answer surprises me.
“Giving my first bed bath,” he says.
When you give a bed bath, “you use a wash cloth to wash a patient’s body,” Cullen explains, adding, “The residents are really grateful for it. One resident told me, ‘Thank you for that. I feel much better.’
This is the third summer that Cullen, a senior at Union College, has spent caring for dying residents at the Joan Nicole Prince Home in Scotia.
His shifts are a mix of mundane tasks aimed at making residents more comfortable and keeping them company. Sometimes that involves chatting at the kitchen table. Sometimes it involves sitting quietly while they rest or sleep.
“A lot of time I’m the only person here,” says Cullen, a native of Guilderland.
Helping terminally ill patients live their final days in peace and comfort might sound like a lot of responsibility for a 21-year-old college student.
But Cullen is more than up to the challenge. The ebullient red-head speaks of his work at the Joan Nicole Prince Home with insight, compassion, even wisdom.
“It can be sad sometimes, but the great majority of the time, it’s happy,” Cullen says. “The patients are sharing their memories and stories with you, and you’re doing the same.
Cullen isn’t the only college student who spends his summers volunteering at the Joan Nicole Prince Home.
He’s enrolled in a unique summer program, called CARE (Community Action Research and Education), that sends college students to volunteer in residential homes for the dying, which provide free, round-the-clock bedside care to terminally ill patients whose families are unable to care for them.
CARE got its start at Union College five years ago, and has steadily evolved since then.
It is now offered in partnership with Skidmore College, and open to students from a handful of other schools, such as Siena College.
This summer there are 13 students volunteering at four different residential homes for the dying: the Joan Nicole Prince Home, Gateway House of Peace in Ballston Spa, Mary’s Haven in Saratoga Springs and Hospeace House in Naples.
“These students are seeing the dying process as it happens,” Carol Weisse, the Union College professor who founded CARE, told me.
But it isn’t all gloom and doom.
Far from it.
“There’s joy in these homes,” Weisse said. “For the students to see that, it makes death less frightening.”
Residential homes for the dying — also known as comfort care homes — serve a noble purpose.
The staff and volunteers at these facilities become a kind of surrogate family for residents, doing “everything a family member would do,” said Weisse, who directs Union’s Pre-Health Professions Program and is herself a longtime hospice volunteer.
Everyone deserves good end-of-life care, and residential homes for the dying ensure that people with little in the way of resources can get it. If anything, we need more of these homes — and more volunteers to keep them running.
CARE was initially geared toward students planning careers in health care.
The idea, Weisse told me, was to give undergraduates who might one day treat dying patients a better sense of how to communicate with and care for those with no hope for recovery. These days, CARE is open to any student with an interest in end-of-life care and a willingness to commit to the research project.
The Joan Nicole Prince Home is bright and cheery, with a back porch, meditation garden, living room and kitchen where executive director Amanda Neveu is baking cookies during my visit with Cullen. The home can accommodate two patients at a time, and each have their own bedroom and bathroom.
Neveu told me that residents — neither of whom are able to speak to me — enjoy speaking with younger people.
“It’s a legacy thing,” she said. “They want to share their stories and have them live on.”
Cullen is planning to go to medical school, as is Nurupa Ramkissoon, a 19-year-old Union College junior and Schenectady High School graduate who has spent her summer volunteering at the Joan Nicole Prince Home through the CARE program.
“It’s definitely been a little sad,” Ramkisson said. “The people who come here are very sweet, and you spend so much time with them. … There’s one resident who likes teaching, and she’s teaching us how to cook. It’s making her feel comfortable, like it’s her home.”
Weisse said her goal is to “cultivate a community of compassionate caregivers,” which sounds like a good goal to me.
At some point, every one of us is going to need a compassionate caregiver, and training students to step into this role could have lasting benefits.
Weisse believes she has created a program that could be implemented at residential homes for the dying all over the country.
“My hope and my dream is that this can spread,” she said.
In 2008 Anne Pinkerton, 46, learned her big brother died during a rock-climbing accident. She was overwhelmed by the suddenness of it all. David, who was 12 years his sister’s senior, was a radiologist with a passion for the outdoors, Pinkerton tells SELF. He died “in the prime of his life while doing some of his most rigorous athletic work,” she says. Pinkerton had never thought of David as anything other than healthy and now she had to make sense of his death.
“It seemed unreal for a long time,” says Pinkerton, who regularly writes about grief. She remembers her persistent thoughts that David would eventually get in touch with her, that his absence couldn’t be permanent. It wasn’t difficult to imagine that he was just away on a trip, she says.
“A lot of that first year was just really trying to process the fact that he was gone,” Pinkerton explains. “It took a long time to come to terms with the fact that I was going to live the rest of my life without my big brother.”
Having had the expectation that she’d grow old with David, Pinkerton’s grief included feelings of sadness, abandonment, and a bit of anger. But there was also the sense that her grief was inappropriate, she says: “Being a sibling and losing a sibling was so unbelievably painful, [but] people were not treating me as though I had experienced something huge.” This isolation “was a big part of what took me back to counseling,” Pinkerton says. “I had thoughts like, ‘Is there something wrong with me? Am I dealing with this inappropriately?’ Because [people were] acting like this shouldn’t be a big deal. And it was the biggest thing that ever happened to me.”
As awful as it feels, grief is a natural human response to losing someone close to you. The intense emotions that come with grief can all be an appropriate part of eventually helping you heal as much as possible. But there are times when grief is even more overwhelming than usual—times when it hinders your life and happiness long-term. But when losing someone has thrown your world off its axis, how can you tell what’s normal and what’s not? Here’s what you need to know about the typical grieving process, the phenomenon of “complicated” grief, and when to see someone like a therapist about your grieving process.
Grief isn’t linear, but it should soften with time.
“Grief doesn’t really go away,” M. Katherine Shear, M.D., director of the Center for Complicated Grief at Columbia University, tells SELF. But most people will eventually get to a point where “the feelings won’t have center stage the way they do in the beginning,” Dr. Shear says.
So instead of neatly labeled stages, the Center for Complicated Grief categorizes the typical grief trajectory as having an acute phase and an integrated phase. The acute phase occurs shortly after a loved one’s death and includes the intense feelings we often associate with grieving, like sadness, yearning, guilt, anger, anxiety, numbness, wishful thinking, and more.
During the acute phase of grief, activities like eating, walking your dog, smiling, and getting out of bed probably seem like major victories. They are. “Even if you’re just going through the motions at first, doing your routines and daily responsibilities is a good sign” that you might be working through your grief, Rachel L. Goldman, Ph.D., clinical professor of psychiatry at NYU Langone Health, tells SELF.
The integrated grief phase is a more long-lasting form of grief where you acknowledge the loss, but it now has a place in your life without taking over it. You’ll still have bad days, but in most cases you’ll start to have more OK days and even happy ones too.
“What softens grief is making progress in adapting to the loss,” Dr. Shear says. “And adapting to all the changes that come along with the loss of someone close.”
The general expectation is that during the first year of grief, you will start to move away from the acute phase toward the integrated one.
“You’re going to feel sad, but ideally you’re also starting to regain your own sense of well-being,” Dr. Shear says. “And hopefully you’re starting to see pathways forward in your life that have some potential for joy, satisfaction, and continued purpose.”
But if the pain you’re feeling doesn’t seem to be softening as time passes or if it’s even getting deeper, you may be dealing with complicated grief, which is a diagnosable medical condition that can often be treated.
Complicated grief happens when these emotions don’t subside as expected with time.
This essentially means that your acute grief is sticking around longer than it should, preventing you from learning how to live while managing your loss.
A lot is still unknown about this condition. For starters, medical professionals don’t have a clear consensus on exactly when grief becomes complicated, the Mayo Clinic says.
In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a resource that U.S. health care professionals use to diagnose mental health issues, this condition is known as persistent complex bereavement disorder (PCBD). The DSM-5 defines it as a “severe and persistent grief and mourning reaction” that must still be around at least 12 months post-loss in order to be diagnosed.
However, the International Classification of Diseases (ICD-11), the diagnostic resource released by the World Health Organization, calls this phenomenon prolonged grief disorder, defining it as a “persistent and pervasive grief response characterized by a longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain.” Experiencing this kind of grief at least six months after the loss is a core ICD diagnostic criterion for prolonged grief disorder.
Though there’s some debate about how long someone needs to grieve in order for it to be considered complicated, one thing’s clear: If the grief is so severe it’s negatively impacting a person’s life in a major way, it may be more serious than typical grief. The DSM-5 lists symptoms like feeling as though life is meaningless after the loss, a preoccupation with the person who’s gone and the circumstances of their death, and loneliness. The ICD lists symptoms such as feeling you’ve lost a part of yourself and an inability to feel happy. (There’s a lot of symptom overlap between the two lists of diagnostic criteria.)
A lot of these symptoms are actually normal early in the grieving process. For instance an inability to stop counterfactual thinking—concocting alternatives to events that have already happened—is to be expected at first, Dr. Shear says. It’s natural to think, If only I had done this one thing differently, maybe the person I love would still be here. But if those thoughts become the focus of your thinking for a prolonged period after the loss, it could prevent you from integrating grief into life. Excessive avoidance is another example. It’s reasonable to avoid specific places or things that remind you of your loss early on in the grief process, but if it persists it might be a sign that you could benefit from support to help you move forward, Dr. Shear explains.
There aren’t firm numbers for how many people are impacted by complicated grief. The Center for Complicated Grief estimates that around 10 to 15 percent of people who have suffered a loss may be dealing with this condition. No one knows why a minority of people develop complicated grief while others don’t, Dr. Shear says. But there are risk factors that might make you more prone to it, like a history of depression, separation anxiety, or post-traumatic stress disorder, or a personal history of abuse or neglect, according to the Mayo Clinic. If the person you lost died unexpectedly or violently, that’s another risk factor, as are circumstances such as the death of a child, social isolation, and life stressors like money troubles.
To make things more confusing, complicated grief is often misdiagnosed as depression, according to the Center for Complicated Grief. One way to tell the difference is that complicated grief is characterized by yearning and overwhelming thoughts about the person you lost, while depression can feel like more of a sadness or loss of pleasure that blankets your life but isn’t centered so much on a death. Of course it’s possible to have both complicated grief and depression too.
Consider seeking mental health support if your grief feels all-consuming.
Pinkerton says that she was comfortable getting a therapist after her brother’s death because she’d been in therapy before. But if you haven’t been in therapy, it can be hard to pinpoint whether or not you could benefit from some extra support.
No matter where you think you might be on the grief continuum, Goldman suggests seeking support from someone like a doctor or mental health professional when you feel you have “reached the end of your personal coping mechanisms.”
Instead of focusing solely on the timeline, try to examine the intensity of your grief. It doesn’t matter how long it’s been. If your grief feels utterly overwhelming, that’s reason enough to reach out. You don’t need to think you might have complicated grief in order to deserve help.
“I don’t think it’s ever too soon to see a provider,” Goldman says. “Worst-case scenario, a therapist says, ‘This is a completely normal reaction. I would also feel sad. I would also cry.’ And that is therapeutic and powerful for someone to hear.”
If you do see a therapist within the first few months of your loss, they might tell you that you have an adjustment disorder, which can occur when you’re having trouble coping with a big life transition, according to the Mayo Clinic.
“An adjustment disorder is a way we classify anybody that has had a major stressor in their life and has [mental health-related] symptoms following that stressor,” Goldman says.
The death of someone close to you is a huge stressor that naturally can come with intense emotions and pretty significant life changes (like relocation, financial issues, and other logistical stuff). These changes and the loss itself might trigger some disorienting feelings, but it doesn’t necessarily mean that there is anything wrong with how you’re handling it all.
The important thing to note here is that adjustment disorders are typically short-term reactions to stressful life events. In most cases, talking through your experience with a therapist should help the adjustment disorder symptoms subside within six months, Goldman says. If your symptoms don’t subside and it turns out you may have complicated grief, you’ve already laid some groundwork with someone who may be able to help.
Experts typically treat complicated grief with something that’s (unsurprisingly) called complicated grief therapy, according to the Mayo Clinic. It involves techniques like retelling the circumstances of your loved one’s death in a guided format that might help you become less triggered by those thoughts or images. Ideally this treatment will help you explore your feelings in a way that allows you to better integrate your grief into your life. And if you have other health conditions such as depression you could benefit from talk therapy for that, along with medications like antidepressants, the Mayo Clinic says.
If you don’t feel compelled to see someone like a doctor or mental health professional right now, that’s OK. But support might be available through other avenues too, like the friends and family who might be desperate to help you or support groups for people who can relate.
“One of the most important things is to feel like someone else has actually been through this before and has lived to tell about it,” Pinkerton says. “If you can find other people who have experienced something similar, it’s incredibly empowering to realize that not only are you not an alien, you will survive.”
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 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 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 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.
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.
“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
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.”
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.
The average life expectancy in the United States is now 78.6 years old, according to the most recent data available from the Center for Disease Control (CDC). That’s almost two times what it was a century ago, when it was just 39.
While some might believe we’re on a path toward immortality, at least for now, death remains the one certain rite of passage that arrives for everyone eventually, and Dr. B.J. Miller believes a reckoning is in order.
“It’s high time to review the very common, boring truth that we’re all going to die,” says Miller, a hospice and palliative care physician whose TED Talk, “What Really Matters at the End of Life?” has been viewed more than one million times. The twist: More open conversations about death and dying may in fact help us all get more meaning out of life.
That’s one takeaway from Miller’s new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-written with Shoshana Berger. Part manual for practical stuff (like how to deal with the mountain of paperwork when someone passes) and more heart-centric subjects (like personal legacy and grieving for loved ones), the book is intended as a resource for anyone who will experience its subject matter, aka all of us. Prevention spoke with him about why talking about death talk is on the rise in the wider culture—and why it’s something to start discussing sooner than later.
We’re about to be the oldest, frailest population ever.
Americans have reached a pivotal population point. “We are about to be, in actual terms and relative terms, the oldest, frailest population ever,” says Miller. “Everyone’s going to be living with chronic illness, everyone’s going to be dying from chronic illness, in numbers we’ve never seen before.” Mass migration into retirement centers and care facilities isn’t the solution—but a more open, pragmatic dialog about quality of life and personal desires could be, Miller believes.
So, it’s time to develop a “relationship” with death.
There’s a reason talking to a sick loved one or sitting down to write a condolence letter can be so paralyzing.
“We don’t have the right language, or we worry we’ll say something at the wrong time and scare the person we’re talking to,” Miller says. His solution: “Think about it like a series of conversations, not a long-time talk.”
Discussing death in the abstract with someone when their health is good can also help you understand what they may want, and need, down the line; furthermore, it can empower you to articulate those things for yourself. Will those kinds of talks potentially make you anxious? Of course. But the aim is normalization over time—and that comes with a silver lining. “There’s a secret in the hospice world: Most people who do this kind of work and are around this subject a lot will probably tell you that their lives are better for it,” says Miller.
Listen to your loved ones.
Miller has observed that patients know more about what’s going on with their health than anyone else does—or that they may be letting on. A person might hesitate to bring up their thoughts about dying because it sounds like negative thinking. “The patient themselves is languishing, not knowing how to talk about it, or they don’t want to hurt their family’s feelings,” Miller says.
His advice is to “keep an eye out. The moment dad says, ‘I’m not sure about this treatment,’ or [mom] starts talking a lot about God,” give them the opportunity to follow that thread. You can come at the conversation from a philosophical or spiritual angle, focusing on beliefs or fears, but the point is to listen and hear them out. “When they crack the window, dare to enter it.”
It’s okay—actually, essential—to talk about costs.
Miller has seen caregivers lose their jobs, drain their bank accounts, and undermine the financial stability of their own families. “It’s as though bankrupting yourself for a loved one is the currency to show how much you care, even though everyone in the mix knows the person is going to be dying,” he says. But while you can’t place a monetary value on a life, it’s okay to keep money in the conversation. “Invite this variable into the mix in a conversation with your doctor,” says Miller. “It’s not just the medication or the pacemaker. It’s the cost of living with this thing.”
Furthermore, he adds: “Our healthcare system is wired to extend bodily life at all costs, and as our technologies have improved you can prop up a body practically indefinitely,” Miller says. “As patients—as people—you have to upend the medical system. You have to disrupt it and say ‘no thanks.’ Otherwise you’ll land in ICUs with tubes in every orifice and your family has got to decide how to schedule unplugging you.”
Ask yourself: Can I afford to die?
“Our commercial world, our health and benefits—all of it shows this huge design flaw: Dying is not baked into the plan,” says Miller. “We tried to erase it and it can’t be erased.” The result: a framework, from retirement saving plans to health insurance programs, that don’t include the costs associated with death in the picture. Which means: “You need to save more than you think you do—sock away money.”
Bear in mind what’s covered, too. An experimental treatment could be entirely out of pocket, while hospice is highly subsidized. At the end of the day: “It’s about harm reduction. You’ve got two shitty options. But a less shitty option is better, and that could make an important difference.”
Think out of the box about legacy.
“Selfish people do not tend to die happy because they can’t see the world outside themselves,” Miller says. Learning to do that—to care about the world beyond your presence in it—can help us all become kinder people, but it can also help frame thoughts about what you want to leave behind.
Miller is referring to legacy, which might be the best shot we get at immortality. But while we tend to immediately jump to monetary donations, it can be any mark on the world you’ve left behind. Miller tells a story about a man who used to sit out on his front porch and wave at everyone who went by; when he passed, “the whole neighborhood changed, just because that guy wasn’t out there waving.” The bottom line: “You’re going to affect people, no matter what you do.” So try to leave behind something they will remember with a smile.
After Michael Draper was diagnosed with a rare brain disease, his husband retired to take care of him full-time
By DAVID TAFFET
Michael Draper describes the condition he’s been dealing with for seven years as a “designer disease.” His husband, Terry Wicks, said that when they finally received a diagnoses, “the bottom dropped out of our world.”
Draper went almost two years before receiving a diagnosis of MSA — multiple system atrophy — a progressive neurodegenerative brain disorder that results in death.
Wicks has become his full-time caregiver.
MSA is often misdiagnosed as Parkinson’s Disease, but it seems to be more related to other diseases like PSP and Alzheimer’s characterized by a build up of certain proteins in the brain. Wicks explained that with MSA, the proteins needed to transmit signals from one cell to another seem to crumple and block transmission. As that happens, brain cells die.
Functions that are automatic — maintaining body temperature, swallowing, breathing, eliminating waste — stop working. Speech is affected. Muscle coordination deteriorates. The person with MSA becomes unable to take care of himself.
In 2013, the couple was living in California. Draper was an executive with Yahoo. Wicks was an MRI technician.
Wicks remembers asking his husband one day, “Why are you so clumsy lately?”
After a year of a variety of symptoms presenting themselves and several doctors unable to diagnose what was wrong, they went to Stanford for a diagnosis. After almost a year of visits, their doctor told them that she was waiting for one more symptom to appear. When it did, she confirmed MSA.
Symptoms appear when a person is in his or her 50s. Draper was 52 when they first recognized something was wrong. Those manifestations progress for five to 10 years.
New drugs are being tried to halt progression, but Wicks said his husband’s condition was too advanced for the medications to work. And because it takes so long to diagnose, most people have progressed beyond the point where these medications will help.
Four years ago, both men had to stop working. Draper was unable to work any longer so Wicks, who’s seven years older, retired to take care of him.
They decided to move back to Dallas to be closer to family. Their doctor at Stanford told them Dallas was a perfect choice because a colleague of hers had recently opened an MSA clinic at UT Southwestern, so Draper would receive top medical care.
Wicks made a trip by himself and purchased a house in Garland. He said it was the only time in their 29 years together that he had bought a house without his husband.
Wicks describes himself as a planner. So before leaving, he had planned what they needed in a house. He found one in Garland that fit his needs — a 1980s one-story ranch without any stairs or steep inclines that could be outfitted for their needs.
Among the work needed on the house was a complete bathroom redo. They replaced the tub with a walk-in shower fitted with a large tiled seat and an entrance without a step so that a wheelchair can roll in.
Because someone with MSA eventually has trouble turning around, Wicks found something he calls a pivot disk, sort of a lazy susan for people. From his wheelchair, Draper can stand and Wicks rotates him 180 degrees so he can sit in the shower or on the toilet.
Wicks said a person who needs this level of care loses all personal dignity and they’ve worked to keep Draper as independent as possible as long as possible. When he couldn’t brush his own teeth with a regular brush, they got an electric toothbrush.
Draper joked that he could still use a razor as long as his husband didn’t mind seeing him with slash marks all over his face. An electric razor allows him to continue shaving himself for now.
While they still are able to make a trip to the hair salon to get his hair cut, their hairdresser said he’d come to house once he can’t get out any longer.
Until recently, Draper had been using mostly a walker. Lately, he’s less able to make it around the house that way, and he’s begun relying more on his wheelchair.
Over the last few weeks, Wicks said he’s also begun having to use a catheter in order to urinate.
Draper said he feels guilty that he’s putting his husband through this, but Wicks wouldn’t have it any other way.
To help them deal with their situation, they go to support groups. Spouses taking care of their spouses compare, commiserate and share. That’s how he learned about the pivot disk. Those with the rare disorder that may affect only about 15,000 Americans don’t feel as alone when they get together.
Wicks is also careful about caregiver fatigue. Draper’s parents will take care of him for a week while Wicks takes a trip to the Seattle area where the couple lived for a number of years to help decide if after his husband’s death, he wants to move back there.
Draper encouraged his husband to take the trip. This way, he can participate in making future plans even if he won’t share them himself. He wants to know his husband will be all right and will return to having a life beyond caregiving.
Wicks said he still is able to leave Draper alone for an hour to run out to the store for groceries. As Draper’s condition deteriorates, Wicks said he’ll have to hire someone to come into the house to relieve him so he can do errands.
Caregiving that includes everything from personal care to doing all of the housework is a full-time job, Wicks explained.
“Unless you’ve done it, you have no idea how much it entails,” he said.
In addition to the physical labor, caregiving involves stress. Wicks described what he’s going through as anticipatory grief. Most people don’t grieve until their spouse is gone, and Draper has already outlived original projections for his life expectancy with MSA.
Wicks doesn’t know if the grieving he’s going through now — imagining what life will be like without his husband — will facilitate the grief he’ll feel after his husband’s death or if he’ll experience the loss he’s expecting all over again.
But that anticipatory grief also propels him to make the best life he can for both of them. Draper still has his sense of humor even as communicating grows more difficult. But as they look at each other and tell their story wishing it was headed toward a different ending, there’s a contentment and bliss in their just being together.