With more than 1.4 million Americans receiving hospice care every year, the demand for high-quality end-of-life care is only projected to rise in years to come. In Minnesota, a “death-positive” movement is to thank, experts say.
While the aging population is growing rapidly, a broader cultural shift is also largely to credit: More doctors are encouraging and accepting of hospice, more mediums are portraying it positively, and more people are discussing and planning for end of life.
“There is a huge death-positive movement happening now,” Christin Ament, organizer of Death Cafes in the Saint Paul area, told the Pioneer Press.
Death Cafes are just one example. Created in 2004, the concept is to offer a place for people to eat, drink and talk about death. Beyond Minnesota, thousands of death cafes are currently operating in more than 60 countries worldwide.
Similarly, the spike in hospice use transcends any one state. Hospice admissions and utilization in the U.S. continued to rise in the second quarter of 2018, according to the latest trends report from Atlanta-based analytics and metrics firm Excel Health.
Experts say the biggest reason for the shift is a change in attitude among doctors, according to the Pioneer Press. Traditionally, doctors have focused on lengthening life by whatever means necessary, opting for curative care as opposed to services more closely aligned to patient comfort.
“At times, you were fighting against what the body wanted to do,” Lindsey Pelletier, a hospice nurse who formerly worked in intensive-care units, told the Pioneer Press. “At times, you were doing something unnatural.”
But now, hospitals have entire teams focused on palliative care, and doctors respect that high-quality end-of-life care is sometimes best for terminal patients.
In addition to making patients’ final days more comfortable, hospice care has also been shown to save money by curbing overall health care spending. With health care costs rising at an unsustainable rate, hospice costs only a fraction compared to many alternatives.
For example, intensive care bills from hospitals can cost thousands of dollars per day, while daily Medicare reimbursement for hospice is $180.
Besides death cafes, the international rise of “death doulas” is also emblematic of the death-positive cultural shift. A type of end-of-life care expert, a death doula carries out a dying person’s plan for how and where he or she wants to die, while also providing spiritual guidance and holistic support.
Some hospice companies have even begun to work with professionally licensed doulas as a way to separate themselves from competitors. On a high level, baby boomers are partially to thank to the the shifting perception of death, experts say.
“My particular demographic is a take-charge-of-my-own-life kind of demographic,” Synthia Cathcart, Compassus’ vice president of clinical development and education, previously told Home Health Care News. “We see more and more openness about, when there isn’t another option given, really embracing that stay-at-home, quality-of-life conversation.”
There are many things we want to talk about with family and friends; death isn’t usually one of them. But from Death Salons to Death Cafes and dinners, there are plenty of signs in Seattle that this is changing
BY: Jen Swanson
There are a couple of ways to kill a dinner conversation. First, discussion of politics, a truism that is magnified in our divisive modern age. Second, religion, although this doesn’t often come up on this side of the Cascades. Finally, death, though most people would never consider raising a subject so morbid. In terms of topics to avoid discussing over dinner—or ever—mortality ranks high on the list.
However, one local entrepreneur and author, Michael Hebb, considers such conventional thinking dead wrong. “It’s like the opposite end of the continuum of talking about the weather or of a cocktail conversation,” says Hebb, whose new book, Let’s Talk About Death (Over Dinner), describes death as the most important conversation we’re not having. Such silence bears serious repercussions, and not only in terms of missed opportunities to connect with your loved ones. The book identifies end-of-life hospital expenses as a leading factor in American bankruptcies, Medicare patients outspending their total assets, and the sad fact that 80 percent of Americans die in hospitals, despite most wanting to die at home.
CONVERSATION STARTERS: The dinner table is the perfect place to gather and talk about death, says Michael Hebb whose new book helps foster these conversations
To Hebb, whose deep interest in death-related discourse led friends to throw a living funeral for his 40th birthday, one problem is that modern Americans no longer make time to eat together. “Just like we’ve forgotten how to pickle and can and preserve, we’ve also forgotten how to come together around the dinner table and have meaningful conversations,” he says, ruing the loss of this important “cultural engine.” The book and its companion website , inspired by a course Hebb taught at the University of Washington, offer an easy, DIY format intended to help readers host their own death dinners, with personalized cues and prompts that have fostered 150,000–200,000 dinners worldwide since launching in 2012. “There hasn’t been a single Facebook, email or Twitter response indicating a dinner went badly, which tells me that people know how to have this conversation,” says Hebb. “Maybe they’ve had a forgettable experience, but no one having a bad experience tells me that we’ve tapped into a basic human need.”
Hebb isn’t the only local focusing on this topic. From Death Salons to the locally produced Speaking of Dying film and companion workshops, there is a quiet movement in the area that’s giving voice to this once taboo subject. “This is a great region that’s having an interesting undercurrent conversation,” says Taryn Lindhorst, Ph.D., LCSW, a Behar professor of integrated oncology and palliative care social work at the University of Washington, who cites the Pacific Northwest’s counterculture vibe, antiauthoritarian bent and focus on experimentation as some of the reasons why.
Karuna Duval hosts Death Cafes which offer a safe place to talk about death
While Michael Hebb was restoring the lost art of breaking bread, the concept of discussing existential topics—like death—over tea and cake was gaining traction in England. The idea for Death Cafes was originally conceived in London in 2011, but quickly spread across the pond to North America and particularly to Seattle, where Death Cafes have cropped up in libraries, mortuaries, houses and actual cafés.
“It’s a safe place to talk about death,” says Karuna Duval, an ordained interfaith minister, hospice chaplain, certified death doula and one of many volunteer facilitators hosting Death Cafes in and around the city.
Duval has hosted Death Cafes in Washington and California, where she used to live, and estimates 7,200 Death Cafes have now taken place in 52 countries worldwide. “I just found it so fascinating because of the experience of so many people,” says Duval of attending her first Death Cafe in 2012 in California, following the deaths of her father, grandmother, partner and first husband. Such open discourse hadn’t been evident 10 years before, when Duval, inspired by a book titled Talking About Death Won’t Kill You, tried to organize her own workshops to foster end-of-life discussions and planning. The response then was lukewarm, but a decade later, the temperature had changed. “It felt like a relief,” says Duval, who was seeking to process all the loss in her life. “It was like, oh my gosh, I can finally be around people who aren’t like wigged out or weird talking about this stuff.”
There are all sorts of reasons why people don’t talk about death: A desire not to sound overly morbid. Fear of the unknown. A remove from death that has happened because so many people now die in hospitals, not at home. The superstitious notion that talking about death might hasten the event. The “go, fight, win” mode often prompted by serious illness. “In fact, the opposite is true,” says Hebb, describing how our cultural programming can work against us. “If somebody has a terminal diagnosis, having end-of-life conversations will extend their life. And that’s clinically proven.”
Our underlying “death anxiety” was the key focus of the late scholar, author and roving professor Ernest Becker, whose seminal book, The Denial of Death, won the Pulitzer Prize in 1974. “Ernest Becker was a cultural anthropologist who developed theories about how the uniquely human awareness of our mortality impacts our behavior,” explains Deborah Jacobs, executive director of the Seattle-based Ernest Becker Foundation, which was founded by a retired physician in 1993.
“I would posit that the death-positive movement is founded on Ernest Becker’s thinking,” says Jacobs of the growing swell of Death Cafes, death dinners and other efforts in recent years to reclaim the ways in which we talk and think about death, actions that echo the foundation’s longstanding efforts to bring our underlying awareness of death to the forefront.
To Becker, who saw death anxiety as a key driver in everything from religion and culture to our choices of partners and jobs, knowledge of our inevitable passing also drives each person to embark on an “immortality project,” or a quest to fill our lives with meaning. “Meaning has to last beyond our demise, our physical demise, so it could be making children, writing books, being good at your job, being a war hero, being a terrorist,” says Jacobs, noting Becker’s diverse appeal.
LIFELINE: Retired hospital chaplain Trudy James, through her company Heartwork, offers workshops that tackle numerous end-of-life issues
Trudy James, a retired hospital chaplain, also sees Becker’s theories at play in our current health care system. “The medical system became part of what was already the underlying denial of death,” says James, describing a system in which doctors don’t talk to their patients about death or dying. This marks a departure from James’ early career, which stems from the 1980s AIDS crisis, when patients knew they were going to die, openly discussed it and ultimately died more peacefully. “We live in this fantastic medical environment where we’re the beneficiaries of fabulous health care and have all these new procedures and new clinical trials and new treatments and new medications,” she says. “It’s caused people to believe they can live forever.”
James’ solution was to create a four-part series of end-of-life workshops and a documentary film, Speaking of Dying, which follows patients, families and medical professionals through various end-of-life options, including Washington state’s “Death with Dignity” law. Screened at churches, senior homes and other venues in Seattle since debuting at the Frye Art Museum in 2015, the film always draws attendees, including doctors and hospital chaplains who’ve never discussed death with their own families, says James, describing the documentary as an instant conversation starter. Meanwhile, the workshops, offered since 2008 through James’ company, Heartwork, offer participants a safe, intimate space to share stories, address questions and fears, complete advance directives and get familiar with hospice/medical procedures, such as CPR, which rarely works out in real life like it does in the movies. Doing this “real work of dying,” as James calls it, allows people to spend their final moments in peace with their family.
Death Doulas These coaches help ease the end of lifeAs more people decide to die at home, death doulas, also known as end-of-life doulas or death midwives, guide patients and their families through the end-of-life process in a way similar to how regular midwives would assist with home births. Death doulas play various roles, from offering patients comfort and companionship in their final days to supporting the family by performing basic caregiving tasks, assisting with funeral planning and helping loved ones grieve. “It’s not to replace any of the components of hospice,” says Karuna Duval, a hospice chaplain who is also a death doula, of the two programs’ complementary functions. The International End of Life Doula Association (INELDA), founded in 2015, is just one of many organizations offering training and accreditation to anyone interested in joining this budding movement.
“If you haven’t had these conversations by the time you get to the hospital, the hospital is a terrible, terrible place to have them,” says Lindhorst, the UW professor, noting the ease with which hospitals can overwhelm patients who haven’t considered their options beforehand.
“It’s kind of like a conveyer belt,” says Lindhorst, describing a medical system whose default status is always set to treatment. “Once you step on it” and start down that path, “then treatment implies the next thing, implies the next thing, implies the next thing,” she says, noting how easily people can get moved through the system, in part because doctors don’t often have more than 15 minutes to explain various options. “It’s not anybody’s fault per se, but the system is so strong in this,” says Lindhorst, who saw early on in her career, which was also rooted in the HIV/AIDS epidemic, that the onus is on patients to be knowledgeable and empowered.
ACTING OUT: Playwright Elizabeth Coplan channeled her grief over the death of a family member into a a play, The Grief Dialogues which is also now a book of essays by 61 authors
The medical community could learn something from Elizabeth Coplan, a playwright who four years ago was struggling to cope with the death of a cousin, a freak accident that claimed a loved one and octogenarian in-laws so fearful of dying they refused to entertain any end-of-life discussions. “Some people write in journals,” the theater veteran remembers of her efforts to process the situation. “I’m going to write about my cousin’s death as a play.”
That exercise resulted in The Grief Dialogues, a series of short plays structured like The Vagina Monologues, but with actors exploring scenarios centered on grief, death and dying. The 90-minute production, which invites a grief counselor on stage to lead an audience Q&A after every show, immediately resonated with people, says Coplan, who credits the play’s passive, third-party presentation as a safe way to broach a taboo topic. “By sharing my stories that way, which you could just take as strictly theatrical or you could take it as entertainment,” people finally started to open up, she says. “Suddenly, people who were afraid to talk about death in general, or their own experiences with grief, all of a sudden wanted to share their stories.”
It was while applying for grants for her production that Coplan came across The Order of the Good Death, a Los Angeles–based group of funeral-industry insiders, academics and artists seeking to promote a culture of “death positivity.” She was especially taken by the group’s Death Salon, a weekend conference on mortality styled in the vein of an 18th-century gathering of intellectuals, so much so that she volunteered to bring the event to Seattle. “It was kind of like a Comic-Con for death,” says Coplan, recalling the Victorian-style hairstyles, makeup and dress on display during the sold-out affair, which took place early in September 2017, in partnership with the UW School of Social Work.
The event marked an important turning point for Seattle’s death community by uniting the diverse leaders of a fragmented movement that had so far existed on the relative fringe. Presentations were delivered by Chanel Reynolds, whose husband’s untimely death led her to found GYST (Get Your Shit Together), a website introducing others to the easily avoided world of wills and life insurance. Other presentations included a Death with Dignity panel moderated by Sally McLaughlin, executive director of End of Life Washington; an introduction to green burials; a film about Death Cafes; and an exploration of postmortem pet options with Caitlin Doughty, the 34-year-old mortician who founded The Order of the Good Death in 2011. Lindhorst, the UW professor, explained the natural signs and symptoms of approaching death, knowledge that’s becoming increasingly rare as fewer people die at home. Nora Menkin, executive director of The Co-op Funeral Home of People’s Memorial—the country’s oldest and largest funeral cooperative and also a Death Salon cosponsor—examined alternative death care. Katrina Spade, the founder of Recompose, described her pioneering efforts to transform human remains into soil. On the first night, The Grief Dialogues debuted to a full house at the UW’s Ethnic Cultural Theatre.
“People who are into this, they’re hungry for it,” says Jacobs of the Ernest Becker Foundation, describing the Death Salon as a “critical community builder,” which has a mission similar to the foundation’s of providing “a home” for like-minded seekers. Along with cosponsoring the event—and participating in Death Salons in Philadelphia and Boston—the foundation facilitated a lunchtime dialogue, allowing guests to break from the conference format and engage in a round-table discussion about death.
The success of the Death Salon conference is one indication of our region’s relative death positivity, which could be attributed to the sheer number of innovators working in this space. “The good-death movement, or the death-positivity movement, used to be defined by a couple of individuals,” says Hebb. “Now, there’s a huge community of thought leaders, practitioners and enthusiasts, so that’s the big change,” he says. “It’s a very multidisciplinary community of people considering these issues,” he says, pointing to the mix of artists, entrepreneurs, doctors and “blue-chip establishment folks,” like Cambia, an organization that runs an entire center devoted to palliative care at the University of Washington, feeding Seattle’s “unique influence and impact.”
Such attitudes could also be influenced by our diversity, speculates Lindhorst, who points to our large Asian population as an example. Religions originating in Asia, she says, “have a very different kind of orientation towards death,” contrasting the Christian biblical literalist interpretation of death with Buddhist movements flourishing on the similarly progressive West Coast. “In many Asian cultures, that idea of integrating daily thinking about death is actually part of the spiritual condition as opposed to the dominant avoidance that we have here in the United States.” Social media, which makes it easier than ever to find and share information, also factors into the death-positive movement’s recent swell.
“I think more of us are talking about death and grief in a very open way,” says Coplan, describing today’s conversations about death as less a “macabre, voyeur” issue and more of an academic one, even if society still has some way to go. “I actually give the millennials a lot of credit for this kind of chipping away of the stigma around talking about death,” says Coplan, who has two millennial sons and meets plenty more at her shows. “They are incredulous that their parents are getting so worked up and don’t want to talk about death,” she says, describing the younger generation’s lack of fear regarding what they know to be a natural eventuality. “We talk about sex, we talk about drugs, why don’t we talk about death?”
Why Talk About Death?
There are lots of good reasons to talk about death, and not only because such discussion helps us prepare for the inevitable. Completing your advance directive, a set of legal documents that detail your last wishes, and communicating its contents and location to loved ones clarifies your thoughts on life support and other medical interventions. (Advance directive forms are available from your physician or most health care organizations.)
Sharing your post-life wishes up front removes any guesswork involving the funeral, which, pending legislation scheduled for the upcoming January session in Olympia, could soon extend beyond the standard burial and cremation options to include alkaline hydrolysis, a water-based cremation also known as “aquamation,” and recomposition, a natural process that converts human remains into soil. Communicating the contents of your will and choosing an executor of your estate helps avoid surprises and legal pushback. Moreover, having these conversations beforehand alleviates stress on your loved ones, allowing them to avoid making difficult decisions under pressure and simply focus on their grief.
“The people who have had the conversation and at least know what the deceased person wanted, if they got a chance to talk about what was important to them, they’re much more confident in making the decisions and going through the process,” says Nora Menkin, executive director of People’s Memorial Association and The Co-op Funeral Home on Capitol Hill. “The people that tend to have the hardest times are ones that didn’t have any conversation, therefore there was absolutely no preparation for it,” says Menkin, whose organization, in addition to regular end-of-life planning workshops, furnishes each of its 70,000-plus members with end-of-life planning documents that double as excellent conversation starters. “We also want to make sure it starts the conversation with the family, because it does the family absolutely no good for Mom to say, ‘Oh, it’s all taken care of,’ but not tell them what she wanted.”
A Few Tips for Getting the Conversation Started
It’s never been easier to instigate conversations about death, at least if you have a copy of Michael Hebb’s new book, Let’s Talk About Death (Over Dinner). The book builds a solid case for why the dinner table is actually the perfect place to discuss death and dying followed by ideas and tips—including what to eat, whom to toast, and a menu of conversation starters—for hosting your own death dinner at home.
Prompts include, but aren’t limited to, the following thought-provoking questions:
• If you had only 30 days left to live, how would you spend it?
• What is the most significant end-of-life experience of which you’ve been a part?
• Do you believe in the afterlife?
• Would you ever consider doctor-assisted suicide?
• If you were to design your own funeral or memorial, what would it look like?
• What song would you want played at your funeral? Who would sing it?
• What does a good death look like?
“It’s like a board game,” says Hebb of the death dinner series’ easily replicated structure, which is also available online. “The only thing we don’t provide is the food.”
Dr. Bob Uslander’s No. 1 goal is to provide people who are in the final stage of life with a “soft landing.”
To Uslander, who runs a Del Mar-based medical practice, that means focusing on patients’ dignity, quality of life, and peace of mind as they approach their final days.
A former emergency room doctor, Uslander said he launched his practice – Integrated MD Care – about three years ago after noticing gaps in the health care system, particularly when it comes to caring for elderly patients and those with serious illnesses.
His solution was a model for delivering health care that creates a deep connection between caregivers, patients and their family members. The care team includes a doctor, nurses and therapists, and works with patients in their homes.
While the health care system, including palliative and hospice care, is very compassionate and works to make patients comfortable as their lives end, said Uslander, what’s missing is someone talking to them about their options for their final days, and how they want to experience their end of life.
“No one is talking to them about how they want to die, and what they want that experience to be,” Uslander said. “They miss the opportunity to have a truly empowered, transformational and meaningful end-of-life experience. The conversations aren’t happening.”
Before launching his practice, Uslander said he set out to research end-of-life care and see what was available What he found was a gap in the health care system, which he is trying to fill. He said he is not aware of any other practice like his.
“We’ve proven the model, that it works,” said Uslander, noting that he has seen the results in the improved quality of life for patients and their families.
In 2017, Uslander began caring for Jane Gillenwaters of La Costa, who suffered from pulmonary fibrosis, a condition that left her wracked with coughing spasms, gasping for air.
Jane’s husband of 62 years, Ed Gillenwaters, said the family watched as Jane deteriorated and lived with fear, anxiety and discomfort, knowing there was no cure for her illness.
Uslander took over her care in the final weeks of Jane’s life, and there was an immediate change. Not only did Uslander make changes that left her more physically comfortable, such as finding her a new, more effective machine to dispense oxygen, and taking her off of medications that weren’t helping, but he also talked to her about her end-of-life options and listened to what she had to say.
“His care restored her personal dignity. The more she talked about what she was thinking and feeling the more relaxed she became,” Gillenwaters said. “What he did was set her free from terrible fear and anxiety that is too often associated with impending death.”
The change in Jane’s outlook in turn lifted a “crushing emotional burden” from her husband and children, said Gillenwaters. When she died, Gillenwaters said, she was relaxed and peaceful, and no longer struggling for each breath.
Uslander has assembled a team of nurses, doctors, social workers and therapists, who can offer a range of services depending on the needs and desires of patients. Those services might include massage or music therapy, nutrition assistance or acupuncture.
The practice is considered a concierge service, said Uslander, meaning that doctors and nurses are available by phone on a 24/7 basis.
Patients pay a monthly fee ranging from several hundred to several thousand dollars, depending on their specific needs. The practice does not accept insurance, because Uslander said, “the low reimbursement and onerous administrative burden reduces the ability to provide excellent care.”
Because his practice is privately run, said Uslander, he has the option of reducing or waiving fees where appropriate. He’s also launched a nonprofit, the Integrated Lifecare Foundation, to provide education and raise money to pay for end-of-life care for those who can’t afford it.
Gillenwaters said he was so impressed by the care provided for his wife that he has since joined the foundation’s board of directors.
“Families need to know that such an approach is available to make the ending of loved ones’ lives comfortable and dignified,” Gillenwaters said.
For those interested in learning more about Uslander’s care and treatment model, he is scheduled to give a talk from 6 to 7:30 p.m. on Tuesday, Jan. 8, at the Solana Beach Library, 157 Stevens Ave., Solana Beach. More information can also be found on his website, integratedmdcare.com.
If you are facing serious illness today or want to prepare for your own, or a loved one’s, illness in the future, you can tell your nurse, doctor and family that you want to talk about your wishes and what’s important to you. As we age, what matters most to us about our health care choices should become more important, not less, especially as we near the end of life. It’s important not just for us, but for those we leave behind.
Let me tell you a story to show you what I mean.
At 68, a woman we’ll call “Carmen” thought she was healthy — until she suffered a stroke and then a heart attack. Her husband, Eddie, a house painter, worried. How could they get Carmen the care she needed? How would they pay for it? Carmen told Eddie she wanted to avoid the hospital as much as possible, go to church and not be a burden to him.
Carmen represents the type of patient who nurses, doctors, social workers and other health care providers see every day. Yet, health care teams often serve people like her poorly. As a nurse, I’ve seen many people needlessly returning to the hospital over and over or spending their final days in an intensive care unit hooked up to machines they never wanted. But sometimes, when the right conversations lead to the right actions at the right time, the story has a better ending.
The Proactivity of Palliative Care
Fortunately for Carmen, her neighborhood community had a program that put together everything a person with a serious illness would need — proactively. This program drew together medical and nursing care with social work services to support the needs of the family grappling with serious illness. Carmen was relieved to learn that the program covered treatments to manage her pain and symptoms and also coordinated her care with her health care team. This is called palliative care.
The palliative care Carmen received was different than hospice care (available to people expected to live six months or fewer). Palliative care provides pain and symptom management until a cure is reached, or chronic condition management until death. Palliative care was an extra layer of support while Carmen got her other treatment.
Not only do people generally feel better with palliative care, they also live longer. Research shows that palliative care improves patient and family satisfaction, increases time spent at home and reduces the amount of time people spend in hospitals.
When Carmen took a turn for the worse and required hospice, her care team listened to what mattered to her and helped her plan accordingly. When it became clear that she was getting worse, the team helped her remain at home and comfortable, just as she wanted. She had time to be with her closest friends, and died with her family around her.
And that’s the point. We deserve to live out our lives on our own terms.
What Matters to You?
The John A. Hartford Foundation is committed to helping ensure that members of the public understand they have a key voice in how care is chosen and delivered. The Foundation supports several groups that provide helpful resources for patients, families and clinicians. This includes Care.Lab, a collective of leading national experts who helped develop scenarios like Carmen’s to illustrate the possibilities; The Conversation Project, which offers free starter kits to help define your wishes and advance directive guidance. If you want to learn more about palliative care in your community, visit getpalliativecare.org.
Improving care for people living with serious illness requires palliative care and — when needed — hospice services.
People should receive the care they want and know how to avoid the care they don’t want. Families should feel supported and better equipped to help their loved ones. Clinicians should know their patients are receiving care that aligns with the patient’s goals. Health care systems benefit from the person-centered care their clinicians deliver. This is the care we should all demand.
Death with dignity is a movement gaining steam.A June 2017 Gallup poll found that 73 percent of Americans supported medical aid in dying at a patient’s request, as long as it is painless.
Oregon is just one of six states plus the District of Columbia with laws in place that allow medical aid in dying. Doctor-assisted suicide will also become legal in Hawaii in January 2019. In 2018, 23 states entertained death with dignity legislation, and Maine is voting on a ballot initiative in 2019.
While the names of the bills vary — Death with Dignity, Medical Aid in Dying, Medically Assisted Dying — the bills are remarkably similar.
Death With Dignity: The Details
For death with dignity, participation by doctors or nurses is strictly voluntary. No doctor can be compelled to prescribe life-ending medicines, there are no government programs which will provide assistance and there is no database of participating doctors.
To qualify for a prescription for life-ending medications, patients must prove they are a legal resident of the state in which it is legal, be 18 or older, be mentally competent and diagnosed with a terminal illness that will likely lead to death within six months. Patients must also be able to self administer the medication. At least two physicians must determine all criteria are met, and several states with pending legislation require witnesses who are unrelated to the patient who have no financial interest in the patient’s estate.
Physicians must also inform patients of alternatives, such as hospice, palliative care and pain management techniques. Physicians may make a referral for psychological or psychiatric evaluation. The laws and bills also require the patient to make at least two oral requests with a waiting period of at least 15 days (20 in Hawaii) between requests, followed by a written request.
Controversy Still Present
Dr. Jamie Wells, a medical ethicist and a director of medicine for the American Council on Science and Health, said the debate over medically-assisted dying laws is difficult in part because we live in a binary culture which tries to reduce everything to black and white. But the individual situations where a law like this would come into play, she noted, are often gray.
“I wish we had more of an honest portrayal of how things happen in these circumstances. Nuances matter, and with these conversations about right to die and end of life, discussion is lost and progress is not made,” Wells said. “There are many shades of gray. Some people refuse further therapy. Sometimes trying the last-ditch chemo can be the cause of death.”
Australian scientist David Goodall made headlines in May when he traveled to Switzerland to end his life at age 104. He had at least one failed attempt to end his life at his home before traveling to Switzerland.
“When people have a failed attempt they can acquire new disease and illness which increases their suffering,” Wells said. “People who attempt to overdose on Tylenol, for example, can have profound liver disease as a result.”
Navigating Family Influence
End-of-life care is an area of medicine where a patient’s family often has an influence on care. But since death with dignity legislation requires non-family witnesses, patients aren’t pressured into ending their lives prematurely.
The opposite scenario happens as well — one where family members resist the patient’s desire to die.
“I’ve literally had a spouse say to me, ‘He can’t die until this date because that’s when the next check comes in,’” hospice nurse Alison Keeler of Washington state said. “Family isn’t always on board with a death with dignity decision. I became a hospice nurse because so often we were doing interventions on people that I felt were really hastening their deaths. They weren’t comforted. They suffered.”
Kristin Metzger of Maryland, another hospice nurse, has taken care of patients who had family members waiting on an inheritance and patients who receive the gamut of care because a family is depending on a Social Security check.
“I’ve seen people intubated, tube-fed, because there is financial gain,” Metzger said. “They’re the reason hospitals have ethics committees.”
Metzger stressed that terminal patients, regardless of whether they are in a state where medical aid in dying is legal or not, should not have to worry about suffering or pain.
“Is physician-assisted dying the answer or the Band-Aid? I actually wonder if we put our work and energy into addressing the root cause — if hospice isn’t actually the answer.” Metzger said. “Many people live longer on hospice because we’re managing their quality of life… If people truly understood what hospice and palliative care can provide for the terminally ill, no one would ever consider medical aid in dying.”
While Metzger, Keeler and Wells hold different opinions on death with dignity legislation, all three agreed it is important for families to discuss their opinions and wishes openly long before a crisis occurs.
“In a perfect world: Everyone has the right discussion at the right time when they can make the right decisions, but unfortunately people are messy and complicated.” Wells said.
Until Louisa’s accident, you could almost always find her working in her garden, pulling weeds, deadheading old blossoms, coaxing tomato vines up their stakes. Well into her 80s, she still made a full midday meal every Sunday for her family and an ever-shifting gaggle of neighbors, grandchildren, and friends — basically anyone who showed up hungry.
As vigorous as Louisa was, when she stumbled and fell earlier this fall, it changed everything. Landing awkwardly on the hard ground, her skull hit a paving stone, causing bleeding inside her brain that led to immediate unconsciousness. After Louisa was rushed to the local hospital, she underwent emergency surgery, but it yielded no improvement. Still unresponsive, she was transferred to a quaternary academic medical center for further evaluation and treatment. But there was nothing more to be done.
As her garden hibernated beneath piles of dead leaves and bits of snow, no one could believe this had happened — or imagine life without Louisa. The 180-degree pivot from healthy and upright to comatose left them breathless.
Family members encircled the hospital bed where she lay: broken bones set, minimal brain activity, a machine breathing for her. I asked them whether Louisa had an advance directive or a living will. Their silent stares were my answer.
It’s not an unusual situation, and they weren’t alone in saying no. In Virginia, where I live and work, nearly 5 million adults don’t have advance directives, including many of the patients I care for at the University of Virginia Medical Center. Nationally, a whopping two-thirds of Americans lack them. But this holiday season, it’s my hope to start to change those odds.
Advance directives are formal declarations of your last wishes, should the unthinkable — a fall, stroke, car accident, aneurysm, heart attack, or other incapacitating event — befall you. They explicitly lay out the extent to which you want lifesaving measures (breathing and feeding tubes, resuscitation if your heart stops, and the like) when other remedies won’t improve your odds of survival; or when, as with Louisa, there isn’t anything more than can be done and you will likely face your remaining days in an unconscious, possibly vegetative state.
In my practice as a palliative care nurse practitioner, in my classes teaching nursing and medical students, and even when I share meals with friends, I often work advance directives into the conversation. Some people twist in their seats, fumbling through their answers, while others are curious and upfront about what they do and don’t know. Still, I press.
I keep a stack of “Five Wishes” worksheets — a simple pen and paper guide to creating an official advance directive — in my office, car, briefcase, even in the guest rooms of my home (Harvard Health Publications, AARP, and others also offer them). And if I don’t have the paper copies on hand, a quick email later and my friend, colleague, student, patient, or family member has what’s needed to get started.
Advance directives get a lot of bad press for being macabre. But I urge you to think of them as love letters to the people you adore. In these documents, you define your last wishes, set parameters for care, and help those who will be caring for you make decisions based on what you want and, just as important, what you don’t want, when curative treatments are off the table.
These love letters safeguard those thrust into the difficult position of making medical decisions for you — some about life and death — so they don’t have to be guided only by well-meaning strangers like me, as Louisa’s family and countless others have had to do.
Advance directives are easy. They don’t take long to complete. Anyone can create them.
As families gather for the holidays, fretting about food, finances, gift giving, politics, and more, I urge them to ask everyone around the holiday table — middle-aged, old, young at heart, and everywhere in between — the following questions. (They’re the same ones I ask my patients who find themselves at various stages in the trajectory of life-limiting illnesses, bringing into razor-sharp focus what matters in the time they have left.)
What would you want done for you if the unthinkable happened — like a catastrophic fall or a major stroke — and treatment options are limited?
Would you want every medical intervention, or only some?
Do you want to die in a hospital or, if it’s possible, at home?
Are there things undone you wish to tend to, people you want to see, and things you want to say?
Are there things you fear, wonder, or wish for?
Essentially, what really matters to you?
When death is imminent, perhaps a matter of days or weeks, patients I’ve had the privilege of caring for often want to leave the hospital and spend their final days in a favorite chair, with a favorite pet, satisfied by favorite meals in the comfort of their own home. Others wish to express their love and gratitude for those around them, imparting last thoughts with purpose, dignity, and humanity. Some want to connect with a loved one with whom they’ve sparred.
To do any of this, they need to declare their intent.
No one needs to wait until death is near to understand or crystallize their last wishes. There’s no time like the present — and no time like the holidays, when family and friends gather — to ask those you love, as well as yourself, about what they want the end of their life to look like, no matter whether that day seems far away or if it might be closer.
In 2008, Sister Rose Mary Dougherty created a Companioning the Dying training program. She started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.
By Debra Bruno
In the United States, there’s probably no better way to spoil cocktail party chatter than by introducing the subject of death, dying or the end of life.
Yet, in the same way that the birth process went from a doctor-run event to a movement in which women took charge of their own pregnancies and deliveries, there is growing interest in thinking about the dying process. In part, that’s because the large population bulge of boomers is reaching a point where the end seems not that far away. But also, many people have had the experience of sitting at the bedside of a dying person without the slightest clue what to do.
And increasingly, classes, seminars, and programs are available that try to help people understand how to comfort those in the last stages of life.
Sister Rose Mary Dougherty, 79, a member of the religious order School Sisters of Notre Dame, calls this companioning the dying and she decided to make it a focus when, years ago, she found herself sitting at the bedside of a dying priest who was a friend. Next to her sat another friend, also a priest.
She watched as the two priests sometimes prayed and sometimes were quiet, together, doing nothing at all. At one point, the priest sitting next to her turned and said: “I don’t know what a priest should do anymore. I don’t know what I’m to do here, but I can be here. Maybe that’s my final vocation.”
That’s when it hit her: Even people trained in comforting feel a sense of helplessness when a friend or family member is dying. But she also resolved to do something about it.
So in 2008, Dougherty created a nine-month Companioning the Dyingtraining program, based in Baltimore. Today, the program provides instruction for hospice workers, caregivers, volunteers and family members on how be with someone in their final months or days.
Companioning the Dying concentrates on something that nearly everyone will have to face at some point in their lives. In the past, it was common for elderly family members to live with their adult children as they aged. Their last days were spent at home, surrounded by loved ones.
Society is different now, at least in many places in the industrialized West, where a youth-focused society has pushed end-of-life concerns mostly out of sight. As a result, people can feel unprepared — even panicked — when they have to deal with end-of-life issues.
“We’ve lost the place of dying,” says Jan Booth, a hospice nurse who also helps out with the Companioning the Dying program. “How do we bring aging and illness and dying into some kind of context that doesn’t change the grief that’s inherent, but changes our capacity to be with it?”
Dougherty started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.
Dougherty, now emeritus program director of Companioning the Dying, lives in her order’s residence in Baltimore. Her voice is weakened by Parkinson’s disease, yet her piercing blue eyes demonstrate the same alert presence that she teaches.
Companioning the Dying has something of the feel of group therapy — with readings, exercises and discussions — in which participants can talk freely and without judgment about anything they might have experienced with the dying, Peter Fitz, 75, says. He wanted to get involved in hospice volunteer work and did the program three years ago.
“Every death, and every person, is different,” says Fitz, a retired English professor. “The crucial part is to find out, with the individual not only on any given day or a particular hour or minute,” where they are. The task, then, is “emptying out your suggestions for people and learning to listen in a different way.”
Those “suggestions” can often end up being the worst thing people can do, says Sallie Tisdale, author of “Advice for Future Corpses (and Those Who Love Them).” People often say things such as “Are you sure the doctor knows what he’s doing?” and “God always has a plan,” she says. “Please don’t say those things.”
She suggests something similar to the Companioning program. “People ask me how to prepare. I say, stand at the doorway and take a self-inventory. Try to drop your own agenda. If the person says, I want to eat ice cream and watch a Yankees game,” just accept that, and do that for them she says.
Lourdes Salazar, a caretaker by profession who also volunteers for her church, St. Camillus in Silver Spring, says that one exercise her Companioning the Dying group did was to choose a day and behave as if it is your last day on Earth. She went out to lunch with her son and told him what she was doing. “I never realized how wonderful it would be to have a lunch with you on my last day,” she told him.
One of the main advantages of Companioning the Dying say participants, is the way it helps them all appreciate their own lives. “When you change your concept about the meaning of death, your life changes,” Salazar says.
Even a nurse who has spent most of her career working with terminally ill children and their families has found that the experience of the course helped her when she was faced with five nearly consecutive deaths in her own family. Janet Will says she thought she was experienced in handling difficult situations. But having the Companioning program allowed her to focus on her own grief and avoid the role of the professional.
“The people who love you the most don’t want to see you grieving any more,” Will says. “Where do you go with that?”
Xaverian Brother Michael McCarthy says that his group ended up being a “tremendously rich melting pot” of people from all walks of life. The group covered details such as what is involved in the dying process, but it also offered time to reflect on being compassionate with oneself even as you help someone else.
It’s not about taking a person’s blood pressure, he says. “You’re going to be present, and if you’re not present with yourself, then your presence isn’t going to be as meaningful” to the dying person.
Peter Fitz remembers visiting a man at a hospice in Baltimore. Fitz didn’t know him. The man was in a “highly agitated” state and couldn’t speak. Fritz asked him if he could nod his head. “Can I take your hand?” he asked. The man nodded yes. The two held hands until the man finally fell asleep.
“In a funny way, he gave me comfort, too,” Fitz says. “It’s an experience that in some important way we shared.”
