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.
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.
Mary Klein, center, speaks at a news conference in Washington on April 5, 2018, to urge D.C. officials to educate doctors about the city’s “death with dignity” law.
By Jon Meacham
Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”
Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.
“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”
When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”
America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.
The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.
The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.
The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.
Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.
Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.
The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.
When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.
I of all people should know how to do this. As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known. I know what I want. I know what the legal options are. But when I sit down to fill out the papers, I stall.
The form remains incomplete.
All of my experience urges me to act. I think of the anguished adult son trying to decide whether his elderly, unconscious mother would want to live permanently connected to a ventilator.
“Pray for me that she dies before I have to make a decision,” he told me. If she had made her choices known before medical calamity struck, her son would have the peace of mind of carrying out her wishes, one way or another.
I think of another family, where two siblings — one of them a physician — came to blows in the hospital waiting room because they could not agree on whether to stop aggressive treatment for their father, given that his organs were shutting down, one by one.
Of course I want to reduce what’s called the “decisional burden” on my own family by making my choices clear in case I become too sick some day to decide for myself. I just can’t bring myself to translate my well-informed preferences into a legal document such as an advance directive.
I’m not alone. Although advance-care planning has other well-established benefits, including an increased chance that patients will receive the care they want, only one-third of Americans have any sort of advance directive, according to a 2017 study led by researchers at the University of Pennsylvania.
And health-care professionals like myself are no exception. In her 2017 book “Extreme Measures: Finding a Better Path to the End of Life,” physician Jessica Nutik Zitter explained why she avoided the task of translating her medical wishes into a series of yes/no check-boxes that make up many advance directive forms.
“My feelings are too complex, too nuanced, to fit into one little white square,” wrote Zitter, who is board certified in both palliative care and critical-care medicine.
So why is this undertaking so difficult? And how can we all get better at completing this vital task?
The first barrier to advance-care planning is often understanding what is involved. According to G. Kevin Donovan, director of Georgetown University’s Pellegrino Center for Clinical Bioethics, an advance directive is a document that usually includes two separate elements: naming a health-care surrogate and creating a living will.
A health-care surrogate or “proxy” is an adult who is legally empowered to make medical decisions for you when you can’t make them for yourself. Many think they have this base covered when they name a durable power-of-attorney. But a power-of-attorney directive does not automatically allow for decision-making power in the health-care realm.
“They can sell your stock, but they can’t take you off a ventilator,” Donovan said.
A living will offers you a way to say in advance what sorts of medical interventions you would want. For example, the form we offer at our hospital asks whether you would want “artificial nutrition” — meaning liquid nutrients delivered through a tube — if you were expected to die soon.
The problem with these forms is that they rarely capture the complexity of real-life medical decision-making, Donovan said.
In the intensive care unit where I work, we recently had a woman in her 60s whose cancer had come back with a vengeance. She was awake and talking with her family, but her vital signs were deteriorating quickly. We asked the patient and the family what they would want if she could no longer talk and make decisions, and they requested an advance directive form.
When I came to check on them later, I found the patient and family puzzling over the form’s questions, such as what kind of care she would want if she were in a “persistent vegetative state.” The abstract scenarios were almost irrelevant to their immediate situation.
I redirected the conversation to the concrete choices in front of them: Would she want a breathing tube put in her throat in the next 24 hours when her lungs began to fail? Or to have a large IV inserted in her neck to start dialysis after her kidneys stopped working? Thankfully for the family, the patient made her own decisions and shared these with our physicians. She said she didn’t want any “heroic” interventions, and she died 48 hours later, with her family at her bedside.
To me, filling out a living will as a relatively healthy person feels like ordering food for a meal I will eat in 20 years: It seems impossible to predict what I will want in that moment. Is it good to be vague and write, “I want to be kept comfortable?” Or better to be highly specific and say, “I never want to have a feeding tube inserted?”
Because living wills are difficult to translate into real-life decisions, many experts now advise focusing on not only naming the right person as your health-care decision-maker but also talking in depth with that person about what’s important to you.
“The best advanced directive is to name an educated person as your health-care surrogate,” said Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System in Miami. “You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet.”
Zitter agreed that having conversations with loved ones is vital.
“A written document is a good first step, but it’s not the ultimate goal,” said Zitter, whose work around end-of-life decisions was profiled in the 2016 Netflix documentary, “Extremis.” “For me, the real work happens on Friday nights at the dinner table, when I talk with my family about illness, and death and what I would want at the end of my own life, even when my sons are rolling their eyes.”
But Zitter conceded that a major barrier stands in the way of these conversations: a fear of talking about death.
“Even for me, as a doctor who deals with death every day, I don’t want to think about my own end, it makes me very sad,” she said.
So what can help us all climb over this final existential barrier to end-of-life planning?
I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure, whose adult son and grandchild were at the bedside. The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son, who otherwise would have to make hard decisions on her behalf. When she finally said she wanted to go home with hospice, her son was visibly relieved.
Framing end-of-life planning as a service to loved ones is a compelling idea. One critical-care doctor I work with suggested we link advance directives to Valentine’s Day. Show your love by sharing what you want. This idea is also what finally motivated me to overcome my own hesitations.
This month, I finally filled out “Five Wishes,” a downloadable document, where I named a health-care proxy and two backups. I wrote I don’t want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped. I had two neighbors witness the document, making it legally binding in Virginia, and placed it in our kitchen filing cabinet.
Talking about my wishes over dinner with my kids? I’m not there yet. Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you.
Patty Webster heard her mom talk about death. A lot. So often that she and her sisters sometimes had to stop their mother from bringing it up. Her message got through, though.
Before her mom died of a stroke in 2016 at age 73, a previous stroke had already robbed her of her ability to communicate. But her family knew what she wanted at the end of her life because she had made it plain to them. That allowed them to share her wishes with her doctors and others so that she could die as she chose.
“We were her voice,” Webster says. “I didn’t know what a gift all of those talks had been until then.”
Webster works for the Conversation Project, an initiative of the Boston-based Institute for Healthcare Improvement. Founded in 2010, it encourages people to become comfortable talking about the type of care they want — and don’t want — at the end of their lives. A survey the group conducted in 2018 found that 95% of Americans are open to discussions about their wishes. But only about 1 in 3 have talked about what they would want. Five years earlier, however, that number had been closer to 1 in 4. More people, it seems, are talking about how they want to die. Some more than others.
“My family is tired of me talking about it,” Webster says, laughing.
But Webster wants those discussions to continue, and she wants the number of people having them to keep growing. She also wants to clarify: “Don’t talk about death but about how you want to live.”
Expressing your wishes for the end of your life and having them respected: Some call it “a good death.” Others may refer to it as “successful dying.” Ira Byock, MD, prefers “dying well.” A palliative care specialist and chief medical officer of the Institute for Human Caring at Providence St. Joseph Health in Gardena, CA, Byock is also the author of Dying Well: Peace and Possibilities at the End of Life.
“Every one of us as adults should be having this conversation,” he says.
In fact, Byock and his colleagues talk to high school seniors about advanced care planning: “We want to normalize this and make it a part of growing up.”
In a paper published in 2016, researchers reviewed 36 previously published studies to determine the “core themes” of a good death. They looked at the question from three perspectives: the person dying, the family, and health care providers. While 11 themes emerged, all three groups ranked three themes as most important:
Deciding how they wanted to die, including who would be with them and having their treatment preferences and funeral plans prepared
Being emotionally well, meaning their psychological and spiritual well-being has been addressed
States Adapt to Change
In some parts of the country, the conversation includes drugs that end your life. Oregon became the first state to enact the Death with Dignity Act, which voters approved in a 1994 refereundum. After years of court challenges, the law took effect in 1998. It allows residents who are terminally ill, have 6 months or less to live, and are deemed mentally able to make their own decisions to end their lives. Ten years would pass before another state, Washington, would approve its own version. Maine became the most recent state to pass a version of the law. Gov. Janet Mills signed it on June 12. These are the other states where doctor-aided dying has been made legal and when the laws took effect:
California (2016)
Colorado (2016)
District of Columbia (2016/2017)
Hawaii (2018/2019)
New Jersey (2019)
Vermont (Patient Choice and Control at the End of Life Act, 2013)
Montana (Although no Death with Dignity law exists in Montana, the state’s Supreme Court ruled in 2009 that the practice was legal.)
The laws have sparked opposition. In Maine, for example, the state legislature passed the law by only four votes. In California, the law was overturned in court last year, but an appeals court put a hold on that ruling, and the state’s Supreme Court chose not to review the case. That leaves the law, known as the End of Life Option Act, in effect, though its future remains uncertain.
Between 2009 and 2017, the most recent year for which statistics are available, 1,364 people in Washington had used the law to end their lives. Last year, in California, 337 people chose to die under the state’s End of Life Option Act. In Oregon, 2,217 terminally ill people have received life-ending drugs over the past 2 decades. Nearly two-thirds used those drugs, while the rest opted not to take them.
“That’s been the case year after year,” says Peter Lyon, MD, medical director of End of Life Choices Oregon, a Portland-based organization that helps Oregonians navigate the Death with Dignity Act and other final decisions. “Some people just like to know that the medicine is there and available if their pain becomes too severe or their condition worsens a great deal.”
On average, says Lyon, people do not reach out to his organization until they have about 3 to 4 weeks left to live. One reason: It’s so difficult for many people to think about, let alone talk about.
“Talking about death is the hardest conversation that families can have,” he says.
More Than a Medical Decision
How you want to die is only partly about medical issues, Byock says. It’s also highly personal. And it will mean something different to you than it will to your spouse, your parents, your children, and others. To reach your own definition, Byock advises you take stock.
“Ask yourself, ‘If I’m seriously ill, what would matter most to me?’” he says. “For the vast majority of us, it’s other people. We are hard-wired to matter to one another.”
Your conversations, of course, should address practical matters, like life insurance information, how to access your safe deposit box, how to close your bank account — and your Facebook account — and more. Byock recalls how much that meant to him after his mother’s death.
“She lived alone, we found that she kept a wooden box next to her phone with all the documents we needed,” he says. “Mom was still taking care of us.”
You will also need to make decisions about key medical concerns. For example, do you want to be kept alive as long as possible, even if treatment causes great discomfort? Or do you prefer care that may allow you to enjoy better quality of life, though your death may come sooner?
“Some people might worry that they’re not going to get enough treatment, while others might be afraid that they’ll get overly aggressive care,” says Kate DeBartolo, who directs the Conversation Project.
Another crucial consideration: Who will speak for you if you are not able to voice your wishes? For many people, that may be a loved one, such as a family member, but it does not have to be.
“I try to encourage my patients to think about who knows them best on their good days and bad days and who is readily available,” says palliative care doctor Christian Sinclair, MD, of the University of Kansas Health System in Kansas City.
DeBartolo agrees: “I would love to expand the idea that it doesn’t have to be a traditional family member. Ask yourself: Who would you trust, and who do you think could really speak for you?”
Such a person, known variously as a health care proxy or surrogate or agent, can be given power of attorney to make treatment decisions for you when you can’t make them for yourself. You also can –and should — put your wishes in writing. Legal documents, such as advance directives and living wills, are an alternative or may be used along with a proxy to make clear what you want.
Sinclair, a co-author of the Institute of Medicine’s 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, says that over the last 15 years or so, conversations between patients and providers about end-of-life care have become more common as more doctors have been trained for such discussions.
“Research shows that when these conversations happen and patients and clinicians are on the same page, there’s more likelihood that those patients will actually get the care that they want,” says Sinclair. “Having a good death is about making individual choices.”
