What is a death doula?

How trained companions help people face their last days

Death doulas can arrange pre-funeral ceremonies with their clients, in a bid to relive happy memories and get some closure.

From organising living funerals to offering grief support, these specialists aim to create a ‘death-positive landscape’

By Lavina Dsouza

Arlena Marie from Arizona, Texas, decided to take a leap and ask in Side Hustle Nation, a Facebook group, how to become a “death doula” and market herself as one.

While some were aghast at hearing such a profession exists, others had their interest piqued because, morbid as it sounds, every person on the planet is a potential customer.

The word doula originates from the ancient Greek term doule and translates as a person who serves. Birth doulas are now common and, like midwives, provide services during the birthing journey. A death doula, on the other hand, offers emotional support to people who believe they’re nearing the end of their life and would like to make the days count.

Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape.
Avril Carr, death doula from Al Ain

While professional moirologists (also known as “crying ladies” in some cultures) have been around for centuries and are hired to wail at funerals, the pandemic has brought death doulas to the fore, as an alternative form of mourner.

Avril Carr is a death doula from Al Ain. She trained as a hypnobirthing teacher, breastfeeding supporter and paediatric sleep consultant, and realised that while a wealth of knowledge is available for the birthing process, the reality of death remains largely ignored.

“We’re suspicious of death, which is interesting because not everyone will give birth, and yet there are countless ways in which mothers and fathers are encouraged to prepare for birth. Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape,” Carr tells The National.

Having a calm presence to see people through difficult moments and celebrate any glimpses of beauty together is a much-needed trait for death doulas. Carr says the feeling of fulfilment when helping someone with death anxiety is an extremely rewarding experience.

“We care for clients in ways that are personally meaningful and affirming to them. Our focus is assisting people with planning, preparing and processing,” says Francesca Arnoldy, a death doula from Burlington in the US, who also developed the end-of-life doula training programme for The Robert Larner, MD College of Medicine at the University of Vermont.

The most heartbreaking thing is to hear someone say: ‘I wish I had known about you sooner’
Lala Langtry-White, doula

Unlike hospice nurses and other end-of-life support providers, death doulas are emotional companions first and foremost, and must be able to customise their services based on what a person is looking to do to help ease the process.

Planning could involve creating schedules to meet others, having conversations that help with the transition, organising a pre-funeral while the person is still alive and sorting through belongings. Some may even want to make a scrapbook or involve family members to help them through the grief.

The amount of grief and uncertainty the pandemic brought has made many – both the ill and the relatively healthy – want to discuss death and have all their affairs in order, be they practical or emotional.

While stay-at-home measures were enforced in many places across the world, death doulas, like most others, turned to technology and came up with creative ways to virtually bring families together during tough times, making people realise they needed tools and information to bolster their sense of readiness.

Jessica Mendivil, a death doula from California, developed free community calls and training for families to help them cope with the loss of loved ones and general lack of preparedness.

Carr realised that while she missed being physically present, she could still impart training virtually on setting the death space, which included different ways to record one’s legacy and sit vigil when death was near.

Small and Mighty Babies, run by Lala Langtry-White and Joanne Hanson-Halliwell in the UAE, set up and continues to offer an online Love Through Loss community, plus monthly support evenings and access to voluntary bereavement doula support and counselling with The LightHouse Arabia.

It’s a lucrative job, but professionals know it can be a vulnerable and intense journey. Death is still not an easy subject for most people and perhaps never will be, but Langtry-White says the most heartbreaking thing is to hear someone say: “I wish I had known about you sooner.”

Complete Article HERE!

Mushrooms are having a moment, most notably in the treatment of mental-health disorders and PTSD

Canada’s federal health minister has recently granted patients, therapists and doctors with exemptions to use psilocybin mushrooms for therapeutic purposes

By

Rebecca Crewe had mixed emotions the day she dropped her partner Tony White off at the ATMA Urban Journey Clinic in Calgary to undergo a psychedelic treatment that uses psilocybin, the “magical” ingredient found in some species of mushrooms.

She was nervous and more than a bit skeptical. Little was known about the experimental treatment that has only recently been made available to patients in Canada with terminal illnesses. But White, who was dying of Stage 4 cancer, was adamant. He was so doped up on pharmaceuticals (including fentanyl, oxycontin, hydromorphine, medicinal cannabis) that his quality of life was non-existent. Even with all the drugs he could still barely walk. “Tony felt he had nothing to lose,” Crewe says.

When she returned to pick him up after his five-hour treatment the changes she saw left her stunned. White was smiling, joking with his psychiatrist and staff. And, most shocking, he was bending down, walking around and moving with a fluidity she had not seen in months.

“He told me he couldn’t really describe what happened,” Crewe says. “All he knew was that he worked some things out and felt at peace. I wish some doctor could explain it.”

For the past few years, researchers at academic institutions such as Johns Hopkins University in Baltimore, Md., Imperial College London and New York University have been trying to do exactly that. They have been studying how psilocybin – a hallucinogen that works by activating serotonin receptors in the brain – affects mood, cognition and perception. So far, it shows promise in helping to alleviate a number of serious mental-health disorders, including acute depression, anxiety, post-traumatic stress disorder (PTSD) and substance abuse.

“It’s still very early stages, but we believe psilocybin treatments can truly be an aid in helping society cope with the mental-health crisis,” says David Harder, chief executive officer of ATMA Journey Centers. “The medicine is not a panacea that will magically heal humanity, but in the right settings, these molecules can open our minds to changing our perspective on those things that hold us back.

“They can help us see our own self-limiting beliefs, trauma-related mental-health struggles, and relational tensions that bring us pain,” Harder says. “They truly are a paradigm shift in treatment, where rather than a pill you take for the rest of your life, it is a shift in perspective through one or two treatments that can change our view of reality, and bring about a life of purpose and joy.”

Within the past five years, the Food and Drug Administration in the United States has steadily granted breakthrough therapy status to drugs that were banned in the 1970s and 1980s, including MDMA (also known as ecstasy and molly), ketamine and psilocybin. In November, Oregon became the first state to decriminalize psilocybin mushrooms, following in the footsteps of cities such as Denver, and California’s Oakland and Santa Cruz.

Currently, Health Canada has only approved psilocybin treatment for people in palliative care. However, a growing number of private companies (startups such as Numinus Wellness, Doseology Sciences and HAVN Life Sciences, all in British Columbia) and academic institutions (University of Toronto and University of British Columbia) are trying to convince government regulators that more money and time should be invested in researching how psilocybin-assisted psychotherapy might be used to unlock some of the mysteries of the human brain.

Dr. Evan Wood, chief medical officer at Numinus on Vancouver Island, says the societal costs of mental illness, addiction and trauma are much too high to ignore the potential breakthroughs that might be possible with psychedelic treatments. “With one in five Canadians currently grappling with debilitating mental-health conditions, we can’t afford not to look at psilocybin seriously,” Wood says, adding that mental illness is projected to cost the global economy US$16-trillion by 2030, according to a recent Lancet Commission report.

At Numinus, where they extract psychoactive compounds from plants and fungi, Wood says they are working toward a psilocybin-assisted therapy trial for patients with substance abuse disorders, as well as depression, anxiety and PTSD.

“There is a part of our brain called the default mode network that essentially enables us to function in our environment by decluttering the stimuli around us and quieting all the information coming into our senses. In depressed patients, and those with PTSD or substance abuse disorders, the default mode network is more active,” says Wood, a professor of medicine at UBC where he helps lead the university’s efforts in the area of addiction prevention and treatment.

“A session with psilocybin seems to disrupt this network, reset it and decrease its activity, thus alleviating the symptoms. The changes it appears to be bringing about with people are really profound. It gets at the root of what’s driving people to these mental disorders. Instead of giving them chemicals that numb those feelings, these treatments help you put that trauma behind you.”

Ronan Levy, co-founder of Field Trip Health, which operates eight psychedelic therapy centres in the world including two in Canada (Toronto and Fredericton; a third will open in Vancouver by the end of 2021) says demand in the last year has been robust. While in Canada they can only provide ketamine therapies at present, he expects both the Federal Drug Administration and Health Canada will approve psilocybin therapies in the next few years.

“I anticipate psychedelic-assisted therapies will rapidly become one of the most important treatment options for most commonly diagnosed mental-health conditions,” Levy says. “The evidence to their efficacy and safety is profound.”

This work is going on while all things fungi are experiencing a curious renaissance. The global mushroom market, excluding psilocybin mushrooms, is expected to be worth more than US$50-billion by 2025, according to the San Francisco-based market research firm Grand View Research. Mushrooms are showing up everywhere in the wellness sector, in coffees, teas, face serums, body lotions and supplements that claim to boost immunity, ease inflammation, improve cognition and relieve stress.

Dr. David Mokler, professor emeritus of pharmacology at the University of New England and an adviser to HAVN Life, says public demand for plant-based medicines is the catalyst driving some governments to slowly start lifting restrictions on psilocybin-based treatments.

“Depression is a life-threatening disorder. PTSD as well. Anxiety causes huge disruptions in people’s lives,” says Mokler, a specialist in neuropharmacology. “Drugs only benefit 40 to 60 per cent of patients with these disorders and there are still a significant portion of patients they have no impact on at all. If we can give them a drug safely like psilocybin, and it eases their suffering, which we’ve seen in many studies, then I am very excited about that. However, there is still so much we don’t know so it’s prudent to move forward with caution.”

Canada is taking baby steps toward allowing even limited use of psychedelic mushrooms – an approach that Dr. Pierre Blier, director of mood disorder research at the University of Ottawa, believes is wise. “The research done to date – by very reputable people in a very serious manner – is, however, still in very early stages.”

He warns that people need to be cautious. “Phase 3 trials are under way, but until we have blind proof of efficacy I would not recommend these treatments to my patients,” Blier says. “The danger is that people hear about these treatments and go buy mushrooms from illicit sources. Some mushrooms are toxic and I fear for their safety.”

For some people suffering from debilitating physical and mental illnesses, waiting is no longer an option. At the ATMA Urban Journey Centre, which opened last January, they have treated three clients so far, with three more in pretreatment psychotherapy.

White died 19 days after his appointment on Jan. 20, 2021, at the age of 46. However, the quality of life he enjoyed in his final days was a gift that Crewe believes all palliative patients should have access to.

“You have to understand how sick he was,” she says. “The day before Tony went into the centre he had a 50 milligram fentanyl patch on his arm and had to take eight bumps of the opioid to keep the pain at bay. After taking the mushroom, Tony’s patch was reduced to 12 mg and he never took another bump again.”

In the last few weeks of his life, Crewe says White found peace – he was happy. “The thing I find amazing is we had to get special permission to try this experimental treatment but we could get fentanyl, morphine and other highly addictive drugs without blinking an eye.

“To me this alternative treatment should be treated the same as medically assisted dying,” Crewe says. “It should be made available to anyone who wants it.”

Complete Article HERE!

Why Death Doulas Can Be Especially Necessary for Folks in the LGBTQ+ Community

By Gabrielle Kassel

According to a survey of 1,528 LGBTQ+ people focused on the state of the LGBTQ+ community in 2020, conducted by the Center for American Progress, more than one in 10 LGBTQ+ people say they have been mistreated by a health-care provider, and 15 percent say they put off or completely avoided medical care in response to such discrimination. And those numbers are even higher for trans folks, with 33 percent saying they’ve had to teach their providers about being trans in order to receive appropriate care, and 38 percent saying they’ve dealt with a provider who was visibly uncomfortable with their gender identity.

Historically this has meant that queer folks have had to shoulder the burden of educating others and also being discriminated against in health-care settings, even in their final days. In recent years, though, that’s started to change with the rise of death doulas entering the end-of-life-care industry to help those who are dying make that transition. And for members of marginalized communities, like LGBTQ+ folks, such care can be especially necessary.

Death doula, defined

Sometimes called a death midwife, transition guide, end-of-life helper, or end-of-life-doula, a death doula does for the dying (and their loved ones) what a birthing doula does for a to-be parent (and their loved ones). “A death doula is holistic provider who offers non-medical, non-judgmental support to those who are dying as well as their loved ones,” says queer death doula and death-work activist Tracey Walker, who serves on the board of directors of National End of Life Doula Alliance (NEDA). While death doulas can benefit all people during this sensitive time, they are particularly helpful for members of marginalized communities—just as is the case with birthing doulas. And dying members of the LGBTQ+ community, in particular, stand to benefit in specific ways.

The support a death doula provides—whether logistical, emotional, physical, spiritual, or a combination—varies based on the specific death doula as well as the client’s needs and wants. “Some death doulas primarily do paperwork around advance directions, while others primarily function as liaisons between the doctors, the patient, and their family,” Walker says. Death doula work may also entail doing household chores, sitting vigil, sorting possessions, writing letters to living loved ones, planning the funeral, and offering the comfort of having witnessed death previously.

While the person dying and their loved ones often can see out the services a death doula provides without this extra support, these tasks can skew emotionally (and maybe sometimes physically) taxing, so outsourcing can be helpful for those who have access to such services. To contextualize this point, Walker says “most people also could cut their own—or a family member’s hair—yet choose to delegate the task out.” In that spirit, people may choose to delegate certain tasks to a death doula in order to free up space and energy to be present for the person passing in their last days, weeks, months together, Walker adds.

How death doulas can help queer patients combat queerphobia and queermisia in health-care spaces

Death doulas are not nurses or doctors, but they can take on the emotional labor and mental energy associated with educating health-care providers about their patients’ positionality, says sex educator and death doula Sarah Sloane, host of the Social Intercourse podcast. And that’s important, considering the ongoing legacy of members of the queer community being disrespected and discriminated against (aka, been victim to queermisia) in health-care spaces.

For LGBTQ+ elders in particular, who lived through the AIDS epidemic, which was rife with queermisia (before it was called AIDS, the virus was dubbed GRID, or Gay-Related Immune Deficiency), the desire to avoid medical care in order to also avoid discrimination and stigma is likely even higher.

In times of need, queer patients need advocates, which is where death doulas can come in for end of life care.

Furthermore, despite estimations that more than 5 percent of the United States population is LGBTQ+ (which is nearly triple as many the estimation of red-headed people, by the way), research has found that only 39 percent of doctors feel they possess adequate knowledge to treat queer patients’ specific health needs. In short: The health-care space has largely been and largely continues to be one that perpetuates transphobia, biphobia, and homophobia. And in times of need, queer patients need advocates, which is where queer-informed death doulas can come in for end-of-life care.

In addition to advocating for the quality of health care that members of the LGBTQ+ community are entitled to, queer-informed death doulas can also ensure that providers are respecting and affirming queer patients’ pronouns, as well as treating their partners as partners—and not siblings, or worse, strangers, for example, she adds.

Death doulas can help model end-of-life transitions that *don’t* prioritize the nuclear family

In many cultures, death is regarded as a family-centric transition, with the dying surrounded by their children and relatives. “But [that idea] assumes that someone’s biological family is a safe and supportive structure in their life,” says Sloane. With data from 2013 showing that 39 percent of LGBTQ+ people have been rejected by or disowned by their biological family members at some point in their life, that’s simply not the case for many queer individuals. (Indeed, society has made strides in accepting the LGTBQ+ community over the last eight years, but that percentage is still not zero.)

Beyond that, in light of a combination of biological factors as well as laws and financial burdens that stand between queer people and parenthood, LGBTQ+ folks are less likely to have kids, and LGBTQ+ elders are also more likely to be single than heterosexual people, Walker says. These factors combined make LGBTQ+ folks less likely to have biological or legal family members supporting them throughout end-of-life care, opening up more need for a queer-informed death doula to be their advocate.

That’s not to say, however, that queer people do not have loved ones or family—many have chosen families made up of people of all ages, for whom they share queer platonic, romantic, or sexual love. “A queer-inclusive and queer-informed death doula will be able to treat these non-traditional family members as family members,” says Sloane.

For example, someone who is ethically non-monogamous may have two or three partners of equal importance, but only one of whom they’re married to, Sloane says. While traditional medical settings would only value and share information with the (legal) spouse, the death doula can value all partners equally.

Why death doulas for the queer community need to be queer or queer-informed

Not just anyone can be an effective death doula for members of the queer community. That’s because all people have unconscious biases that shape our worldview and the care we give. “For queer people, having a queer death doula can be comforting,” Sloane says, because it provides assurance that the death doula won’t bring in internalized or externalized bias against queer people. Furthermore, a queer death doula may be more conscious about asking a person’s pronouns and saving someone from the task of code-switching, or alternating patterns, gestures, and expressions.

As an outsider to queer spaces, “a non-queer death doula will need to ask questions that a queer person would just know the answers to, due to their lived experiences as a queer person,” Sloane adds. Take, for instance, that in some communities, it’s common for a person to be bathed following death, before burial. “A queer doula may be more likely to know that and thus ask questions like, ‘Do you want your body to be washed?’ or ‘What are your boundaries and preferences while being washed?’” Sloane says. These questions are important because, she adds, “a gender non-conforming person may not want their unclothed body to be seen by any family member or friend, other than the lover.”

It bears mentioning that not all effective doulas for queer people need to be queer themselves. Queer-informed doulas—or, doulas who have undergone sensitivity training and who understand the unique discriminations, needs, wants, and wishes of members of the LGBTQ+ community—can be valuable, too. “Queer-informed and queer death doulas typically say as much in their social media marketing and webpage, and talk about specializing in LGBTQ+ elders,” says Sloane.

To help you find a queer-informed or LGBTQ+ death doula, check out the Gay and Lesbian Medical Association provider directory or ring your local LGBTQ+ center. Ultimately queer-informed death doulas can be a profound addition to the end-of-life care team of a LGBTQ+ person to help ensure that they and their loved ones can be present with the time that remains.

Complete Article HERE!

When It Comes to End-of-Life, Some Are Taking Matters Into Their Own Hands

It’s called the VSED option — the refusal to eat or drink. The goal is to hasten death and it’s perfectly legal.

By Kevyn Burger

Some patients diagnosed with terminal illnesses or chronic progressive diseases find the prospect of a long decline, great suffering or significant deterioration to be intolerable.

For those with the desire to hasten their own death, one option is to refuse to swallow food or sip liquids. The practice, known as “voluntarily stopping eating and drinking,” or VSED, typically results in death within 10 days to two weeks.

“People have been dying this way since time began. It’s a natural way of dying, but people should know they can’t do this by themselves. They need to be attended by those who are knowledgeable about symptom management who can help them have the least bad death possible,” said Judith Schwarz, the clinical director of End of Life Choices New York.

A registered nurse with a Ph.D., Schwarz has written and lectured widely on the practice and advised hundreds of people who have chosen and followed through with the VSED option.

Now she has collaborated with a palliative care doctor, a bioethicist and a law professor specializing in end-of-life issues to co-edit a comprehensive, first-of-its-kind book on the subject.

First-of-Its Kind Book on VSED

Published this month by Oxford University Press, “Voluntarily Stopping Eating and Drinking, A Compassionate, Widely-Available Option for Hastening Death” takes a multi-disciplinary approach to explain both the practical complexities and ethical conundrums of the process to patients, their families and the medical clinicians who care for them.

“People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process.”

Hastening death via VSED is not an impulsive decision. Schwarz describes the people she advises about how to die this way as “well informed and determined,” embarking on the process after securing aid from experienced guides.

“They understand that they need family and caregiver support, twenty-four/seven care at the end from people who understand why they made this decision,” she said. “They need access to palliative or hospice oversight. Medications must be available to the patient to aggressively treat symptoms of pain.”

Co-author and palliative care physician Dr Timothy Quill, of Rochester, N.Y., finds that many of his patients who have pursued VSED shared a personality type.

What a VSED Patient Can Expect

“Of what I call the last-resort options, VSED is the mostly widely available and the least widely described,” he said. “People who choose this and are successful are strong willed, they like to be in charge. Those qualities are useful for this process. They are on the sicker end of the spectrum and want an option to speed things up. They are prepared for the end of their life.”

The new book offers case studies that detail what a patient who chooses VSED can expect in the dying process

Book cover of, Voluntarily Stopping Eating and Drinking. Next Avenue, VSED, end of life

“At first they’re up and around and it’s a time for family to come together, for saying goodbye. They gradually get weaker, the world starts getting smaller and they become less responsive,” said Quill. “As they get dehydrated, their blood pressure drops and that causes organ failure.”

After the first day of no food or liquids, hunger tends to ease, but thirst becomes overwhelming. But even the use of ice chips or hourly sips can prolong the process. So, an oral care strategy that includes swishing and spitting, swabbing and using mists that don’t rehydrate the patient must be planned.

Schwarz notes that most VSED patients experience agitation, delirium and/or hallucinations in the 24 hours before death.

“Everyone has a period of this, and they need anti-anxiety meds and strong tranquilizers to medically manage symptoms so that the delirium is not intrusive, frightening or awful,” said Schwarz. “At this time, family can be present, holding the patient’s hand or playing the music they like. I say, ‘Don’t disturb them, as they are on their journey leaving this world.’ I can assure them that their loved one is not suffering. At the end, they stop breathing and their heart stops.”

Complete Article HERE!

Reimagining End-of-Life Care During the COVID-19 Pandemic

A team of human-centered designers created Famous Last Words, a toolkit to activate agency and intentional connection during the lonely COVID-19 period

By Allison Fonder

If the COVID-19 era has taught the world anything, it’s that no one is a stranger to drastic change or loss. The early phases of the pandemic in 2020 marked the beginning of an especially frightening time for hospitalizations and death—until somewhat recently, patients with severe COVID-19 had no choice but to enter hospitals alone, many tragically dying after intubation with no family by their side.

When designer and founder of Blumline, Natasha Margot Blum, reflected upon the most urgent healthcare challenge of the pandemic, she gravitated toward palliative care, death, and dying. Designers and volunteers all over the world activated in response to the pandemic. One community of healthcare innovators and human-centered designers formed quickly through a Slack group: the Emergency Design Collective. While there were a number of designers working on critical medical equipment like respirators, Blum and other practitioners began contemplating death and the end-of-life experiences that neither patients nor clinicians desired, but were happening by default due to the rapid acceleration and unpredictability of COVID-19.

In 2020, a storm of tragic stories emerged about emergency medicine doctors being forced to make tradeoff decisions around which patients would receive limited ventilators. In addition, there was a panic around how to store bodies of the recently deceased; these stories ultimately catapulted Blum’s impassioned team into action. Gathering her studio, Blumline, and a group of volunteers from the 2020-formed Emergency Design Collective, Blum went on a search to discover what sorts of contributions to current challenges related to death and family planning could have real impact.

Can we design better discussions around end-of-life experiences?

After some time, Blum’s team decided to focus on creating, as she describes it, a “self-discovery tool” that allowed individuals and their families to have a framework for hard conversations in the context of the pandemic. A tool like this didn’t just feel important as a way to discuss death, but as a way to discuss values and make meaning. As Blum notes, the team’s vision was centered around mental health: “it’s about reevaluating who we are and who we want to be so that we can define our identity, our legacy, and have the most rewarding relationships with the people in our lives while we’re still here.”

The team created the framework for what is now Famous Last Words, a website and downloadable playbook designed to facilitate a discovery process for each participating person, and to learn alongside their loved ones. Blum shares, “we created a delicately sequenced conversation, structured with and toward the core principle of agency. People choose their questions, their co-conspirators—the people with whom they want to embark on this learning journey—and the timing themselves. It’s a three-event series that culminates in tougher ethical questions around care at the end. You can’t ask people to start with the tactical first. Traveling from abstract to concrete, as we do in the design process, is essential.”

The document thoughtfully guides family and friends through questions and reflections on life, defining a “good death”, as well as clarifying needs and wishes. Participants are encouraged to conduct these conversations via Zoom in at least three sessions, and create an artifact of notes and memories that can guide care if health deteriorates rapidly, and create a beautiful record when someone does die.

Rapid prototyping & remote-first conversations

The team also implemented the use of technology like Marco Polo, an app that lets people string together video recordings of themselves with notes in their rapid prototyping process. Platforms like Marco Polo not only allow participants to spend more time ruminating on these deep questions, but they also inadvertently create an ephemeral video log of memories and reflections that vividly illustrate a person’s network of care. In the product’s final form, Famous Last Words is platform-agnostic—whether Zoom, Marco Polo, or WhatsApp works best is up to what’s most comfortable for the group.

Marco Polo is used to answer questions within Famous Last Words and create a living narrative during a prototyping experiment with a group of mothers for feedback (who are concerned about generations above and below them in their families).

The Famous Last Words guidebook helps loved ones navigate critical medication conversations, while also recognizing how these conversations are often stopped in their tracks due to their emotional weight and our discomfort with the topic. As Blum puts it, “The whole premise [of Famous Last Words] is that it’s up to you to own your story. This pandemic offers us an opportunity to activate a culture of intentional agency in a time where many people feel like they really don’t have any. And that feeling of helplessness and hopelessness is one that results in unnecessary, and sometimes undesired care. If somebody doesn’t understand the implications of what it means to choose a ‘do not resuscitate’ versus another form of care, that can lead to a lot of challenges. So we’ve tried to build that in the best way possible to guiding people while allowing them space, time, freedom, and ultimately giving them the stimulus.”

Research

Blum and her team’s work at Blumline starts with research, which was an important tenet for a project as serious as Famous Last Words that also required a quick turnaround. The team’s first step was reaching out to workers on the front lines during the pandemic, people like emergency medicine physicians, hospice and palliative care doctors, therapists, and people who lost loved ones. After those conversations and creating a journey map, Blum said with COVID “it became very clear once you cross the threshold into the hospital, your agency decreases immediately. So clearly, the greatest opportunity space is before that happens, and that means we’re working way upstream.”

Once they landed on wanting to focus on facilitating end-of-life conversations, the team began a series of different diary studies and competitive audits in order to sensitively explore questions like, how should the conversation be structured, with a trained moderator or as a mutually-led group conversation? What is the best way to frame death within a guidebook that addresses it so heavily? After rapid prototyping a number of potential solutions, the team decided to create a document that lived on its own in PDF form so it was as accessible as possible.

The journey map that illuminated the real window of agency in the progression of COVID-19 and hospitalization.

Challenges

With such a deeply contemplative mission, it’s easy to see why it would require a dedicated group of volunteer designers to bring something like this to life—but it brings up interesting questions as to how medical professionals must prioritize aspects of care to treat as many people as they do. Projects like Famous Last Words demonstrate that there’s much more room for designers to intervene and allow space for medical systems to explore deeper questions. As Blum puts it, “health care providers don’t think about care in a reductive way, but that’s the way that our healthcare system works—it is fundamentally structured in a way that doesn’t give us a lot of room to engage in care that doesn’t produce an immediate result, relief of a symptom or a situation, and death, dying, and care just doesn’t fit into a clean, idealized silo at all.”

Famous Last Words’ current solution to this problem is to generate support from one’s own personal connections and curious, like-minded people. Conversations are led by friends and family rather than medical professionals, illuminating the power loved ones have in ensuring a person’s death is handled with care. Blum says “There are so many amazing care providers, but a lot of care and certainly a lot of decisions happen in non-transactional, peer-to-peer moments. We don’t have economic structures or incentives to manage care the way we’d ideally want to, but that’s where community organization comes in, and support from pioneers like end-of-life doulas, and radically innovative remote palliative care.”

Famous Last Words guides people to explore the origin of their beliefs around death and dying, introducing a range of provocations and stimulus to spark creativity.

This project serves as a helpful reminder to us all, especially in these fragile times, that it’s crucial to band together as a community to care for our own. Secondly, it’s more important than ever to engage more with the concept of death, and make conversations around what we want for our own end-of-life experience easier. “We’re all going through this together and so it doesn’t make sense to narrow down to a very specific design audience when everyone is thinking about their mortality. That’s why we solicited perspectives from people who had family members or loved ones who were very resistant [to that conversation] so that we could understand how to soften the tone and soften the perception of confrontation,” Blum said. And of course, the team aimed to give the topic the meaningful weight it deserves. Dan [Tuzzeo, design researcher and content strategist] put it beautifully: “it was important to strike a balance between normalizing the conversation while still respecting the subject matter—and the people having the conversation.”

With the delta variant creating yet another curve in this saga, this is still just the beginning of an opportunity to embrace a “re-design your life” mindset, rethinking what life is, and what kind of healthcare and dying experiences are possible.

For anyone who wants to uncover their own values, legacy, and boundaries (which is everyone, the team hopes) while engaging in a meaningful conversation about life and death, Famous Last Words is a great resource—you can access the Famous Last Words playbook here.

Complete Article HERE!

When spouses disagree on the best course of treatment for their kids

Each parent wants what is best for their child, but their version of what that is tends to differ

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When a child is diagnosed with a terminal illness, it changes the family dynamic. For parents, it is devastating news, and regardless of the outcomes, they will never be the same again.

These parents are expected to make difficult medical decisions about treatment for their child. However, they often don’t have the mental or emotional capacity to adequately deal with this heartbreaking situation. They lack an effective support system and the knowledge needed to make truly informed decisions.

In emotionally charged situations like these, I often see parents revert to ingrained beliefs systems and fear-based forms of decision making – simply because they are struggling to come to terms with the reality of what is happening to their child. Unfortunately, this is exactly what can cause disputes between parents about how to proceed with treatment.

Over my 15 years with Chai Lifeline Canada, I’ve seen this happen time and time again. Family conflict is almost unavoidable when the life of a child hangs in the balance. The truth is, each parent wants what is best for their child, but their version of what that is tends to differ. But disagreements can be resolved amicably when parents are provided with support and guidance.

I’ve also seen parents reach compromises on the best course of treatment but, unfortunately, this is not always enough to save their child. This leads to feelings of guilt and resentment. The cycle of blame and guilt can be disastrous for a marriage when both individuals are experiencing intense grief.

I will now delve into how beliefs affect the decision-making process, the most common causes of spousal disagreements, methods to resolve family conflict around treatment for a serious illness, whether a marriage can survive the death of a child, and reasons why the marriage may end anyway.

Studies show that parents tend to make medical decisions based on information provided by clinicians, but how this information is perceived differs according to their personal values and beliefs. Each parent has their own set of values and beliefs that have been formed since childhood and two different world views. This can result in disagreements and family conflict, especially during trying times.

Each parent will frame the information received in their own way to determine what they believe is best for their child. One parent may feel that aggressive or experimental treatment is the only way forward, while the other may feel that their child has suffered through enough medical interventions. Neither is right or wrong, but each wholly believes that their decision is what’s best for their child. Both individuals are simply trying to be good parents in an extremely difficult and unfair situation.

When parents disagree on the best course of action, tensions rise. Incompatible beliefs and conflicting decisions can increase negative emotions such as anger, fear, and guilt in both parents. This mental and emotional stress not only affects both parents but also has a negative impact on the child. When drawn out disagreements lead to treatment delays, the child’s best interest is no longer being considered.

But how can parents move beyond their subjective beliefs to make decisions that are truly good for their ailing child? Is it even possible?

What people believe forms them. Therefore, when contradictory information is introduced, the cognitive dissonance between their belief and reality causes an internal battle. They may logically be aware that one course of action is the better option, yet emotionally they are unable to make it. When both individuals feel this way, it can be tough to reach a resolution.

Once parents understand that their decision-making process is driven by their beliefs, it may become easier to find a compromise that appeases both individuals. However, this depends greatly on their previous ability to resolve conflict. It’s important to acknowledge the factors that cause disagreements between spouses as these tension-causing factors are enhanced during stressful times.

There are, of course, many different factors involved for parents with a terminally ill child. But the main reasons why disagreements develop between spouses in terms of treatment are:

  • A lack of communication
  • Different perspectives
  • Feelings of powerlessness

Poor communication between spouses is the single greatest source of conflict. If a couple had poor communication skills before, dealing with the stress of a seriously ill child is likely to aggravate the problem. A lack of communication between partners can quickly escalate when faced with a difficult situation. This causes a breakdown in trust, avoidance tendencies and arguments. Open, clear, and honest communication is essential for parents to resolve disagreements about medical treatment for their child.

Differing perspectives about the situation are another factor that can cause disagreements. Each person will have a unique perspective based on their internal beliefs and values. This influences how they interpret the information provided by medical professionals and healthcare workers. A person’s perspective will affect how they justify the risks and view the benefits of certain medical treatments. When parents have different perspectives about important issues, disagreements occur. Spouses need to realize that, although their opinions may differ, they still want the same thing – what’s best for their child.

There is nothing more heart-wrenching and disempowering than watching your child struggle with a serious illness. As a result, many parents deal with feelings of powerlessness. This common experience may contribute to the development of disagreements. Parents tend to feel excluded from medical discussions about their child (feeling they are the last to be consulted) or that they haven’t been given enough information to truly make informed decisions. When people feel as if they have lost control over something as important as their child’s health, they will try their best to take back control in any way possible. This can manifest as someone stubbornly sticking to their decision for treatment even though their spouse doesn’t agree or that it may not be the right choice for their child.

In cases where families disagree about treatment, a resolution somehow needs to be reached. When parents are bitterly divided about continuing or discontinuing treatment, the hospital may turn to the court for guidance. Unfortunately, this can delay matters. In the end, it is better for everyone involved if spouses could come to an agreement before a trial is required.

Although parents make many decisions about their child’s medical care, many parties are involved in the process. The child’s care team may consist of the parents, doctors, nurses, specialist physicians, other supportive family members, and in some cases, even the child (depending on age/maturity). Each of these individuals has a right to share their thoughts, voice concerns, or weigh in on treatment decisions. Therefore, if parents cannot agree on a course of action, further discussions with the entire care team are required. An impartial or objective professional could even mediate these discussions to ensure a shared decision is reached.

Since many parents feel like they don’t have adequate knowledge to make an informed decision, a mediated discussion with the medical team can be helpful. During these sessions, the healthcare providers should answer any questions the family members may have. They should also offer as much information as possible in terms of the available options, as well as the benefits and risks involved. If the ill child is old enough, they should also be included in the discussion and have a say in the decision. This may even make it easier for the parents to resolve their disagreement.

A psychological support system can also be helpful for spouses. Counselling can help parents improve their communication skills, understand the basis of their differing perspectives, and come to terms with the situation that is making them feel powerless. A trained professional can help spouses deal with the issues causing disagreements. By expressing their emotions and learning to understand their partner’s perspective, the tension may defuse and allow the conflict to resolve itself. In this manner, they can form a united front and focus their attention on their child, who needs them to be present.

Despite the effort of everyone involved and regardless of the treatment decisions made, the child may die. The death of a child is one of the hardest and most traumatic events that a family can ever experience. Both parents are changed forever after the loss of a child. This puts an enormous amount of stress on a marriage – even a healthy one.

There is a myth that most marriages (80 to 90 per cent) will fail after the loss of a child in any manner. However, the truth is that only about 16  to 20 per cent of marriages end as a direct result of a child’s death. Instead, this type of trauma tends to put a spotlight on the existing properties of the marriage. Consequently, some marriages will get worse, others will improve, some may simply continue without much change, while others will end in divorce. It all depends on the strength and health of the marriage before the trauma.

With extenuating circumstances, such as the stressful months or years that their child was sick, the risk of divorce increases. When spouses are opposed to treatment options, this can cause further tension. One parent may feel guilt that they proceeded with their choice, resulting in the passing of their child. At the same time, the other parent may feel resentful that their decision wasn’t followed and blame their spouse. A cycle of guilt and blame combined with intense grief can easily destroy even the strongest marriage.

There are many reasons why a marriage may end after the loss of a child. But three main factors will ultimately affect the outcome:

  • The different ways in which individuals grieve (specifically the differences between males and females).
  • An inability for spouses to meet the needs of their partner during the grieving process.
  • The nature and circumstances of the death (a long, stress-filled period of illness) influences the grief response.

People grieve in different ways. The very nature of grief makes it a subjective experience. Grief is a long-term process, not a once-off event. In any other situation, spouses serve to comfort each other during times of grief. But when both partners are experiencing the raw grief that accompanies the loss of a child, they may find it difficult to comfort and support each other. This is because the mode of grieving for each individual can change from moment to moment. Neither spouse will be in the same mindset simultaneously, which can cause misunderstandings and feelings of being disconnected.

Males and females also tend to process grief in different ways. Women and especially mothers will feel intense grief for longer periods. On the other hand, men usually become more task orientated as a way to manage their grief. When confronted with grief, women will show their emotions openly while men will release their emotions privately.

These differences can make each spouse feel as if they’re going through the experience alone. Essentially, problems in the marriage occur during this time because each spouse is grieving in their own way, making them unable to meet the needs of their partner. This is not intentional. Most parents can barely meet their own needs, let alone anyone else’s, after the death of their child. Grieving people turn inwards, focusing on their own emotions and leaving little energy for anything else. Even though they are grieving simultaneously, each partner will suffer from a profound sense of isolation. When people feel that their grief is not being understood or their partner can’t meet their needs, it puts additional strain on a marriage.

Finally, the nature and circumstances of the child’s death can also influence the parents’ grief responses. Generally, parents experience less guilt if the child dies an anticipated death. Unfortunately, this is not the case if they disagreed about treatment. The prolonged anticipatory grief likely exacerbated the marital relationship as well. Often, parents of seriously ill children deal with many compounding stressors such as financial issues due to medical bills or pressure from clinicians about treatment. All of this can have devastating consequences for their marriage.

Parents of terminally ill children need support systems. Open and honest communication with each other and the health care team should be established from the onset. Conflict will only be resolved if parents feel empowered to make informed decisions about their child’s well-being. Regardless of the state of their relationship, bereaved parents need to seek support from organizations such as The Compassionate Friends to overcome their grief or even save their marriage. There are many resources available aimed specifically at supporting families throughout the entire process.

With the proper support systems, open communication and a solid foundation, it is possible to move past tragedy as a united front.

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Qualitative Study Shares Strategies for Successful End of Life Conversations for Patients With Cancer

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End-of-life (EOL) discussions such as advanced care, palliative care, and discontinuation of treatment are consistently being missed, according to a study published in JAMA Network Open; however, investigators highlighted existing strategies that are being utilized to achieve successful EOL conversations.

Investigators found that out of 423 outpatients encounters with 141 patients with advanced cancer, only 21 encounters (5%) included EOL discussions. When investigators included a random sample of 93 encounters, 35 encounters (35%) included missed opportunities for EOL conversations. Three patient/oncologist dyads had more than 1 encounter with a conversation pertaining to EOL, which translated to 17 of 141 dyads (12%) having at least 1 event of EOL discourse. The dyads included 13 of 39 oncologists (33%).

“In this secondary analysis of outpatient oncology visits, EOL discussions were rare and missed opportunities for these discussions were common. When oncologists did discuss EOL, they framed it around trade-offs, anticipatory guidance, and acknowledging patients as experts,” investigators of the study said. 

Investigators identified 3 strategies that are being used to navigate opportunities for successful EOL conversations:

Those who take advantage of opportunities for EOL discussions are able to reevaluate treatment options based on patients’ concerns, outlining the risks and benefits between treatment continuation and discontinuation. When suggesting chemotherapy for treatment, it is imperative to be transparent in letting patients know it could prolong survival, but there would be discomfort from adverse effects, the investigators stated. This allows the patients to make decisions about their own future.

Another strategy that has been utilized when making EOL decisions is allowing patients to be experts on their treatment decisions in order to meet their goals. This was accomplished by positing questions such as “What would you like?” and “What was the goal you would like to attain?”. By exploring a patient’s goals and allowing them to lead the conversation, the patient can shape treatment recommendations. Patients are able to explore their thoughts and feelings with regard to treatment discontinuation in a manner that is approachable. This allows one to act as a facilitator who creates an environment of reflection, while the patient shifts their focus to decision making.

The use anticipatory guidance to frame conversations pertaining to treatment reevaluation is another useful strategy. Anticipatory guidance can be used to identify a potential timeframe in which patients will need to make decisions regarding quality of life over cancer-directed treatments. During this time, it is the oncologist’s responsibility to provide sign posts to convey when it may be time to consider quality of life over treatment. This helps patients set appropriates goals and limits as to when they might like to discontinue treatment.

There are a number of hurdles that lead to missed opportunities for or deflected EOL conversations, one of which including responding inadequately to patient concerns. Patients who are concerned about disease progression or dying are often met with partial, avoidant, or absent responses instead of opening the conversation about EOL, which limits the opportunity for patients’ conversations around goals, values, and preferences. Additionally, giving little to no response when a patient expresses fear at the idea of living for years with late stage disease could prevent the occurrence of conversations around disease burden, treatment decision making, and EOL care.

Although speaking about the future optimistically may seem helpful it does little to address patient concerns. Instead of using anecdotes about other patients who exceeded life expectancy, consider using that moment to realistically discuss the patient’s prognosis.

Additionally, expressing concern over patient’s decision to discontinue treatment could be another opportunity for a missed discussion. Although one might be able to justify their treatment decisions by stating that they are in line with the patient’s goal, it is a missed chance for discourse pertaining to quality of life and treatment goals. Moreover, declaring a patient’s next steps for treatment without holding a proper conversation is yet another missed opportunity wherein a conversation about the patient’s options could have taken place.

“Although we recognize that not every patient or appointment may necessitate an EOL discussion, all patients in this study had stage IV malignant neoplasm and their oncologists had previously acknowledged that they ‘would not be surprised if they were admitted to an intensive care unit or died within one year.’ Despite the urgent necessity of EOL discussions within this population, we found far more missed opportunities than actual discussions in this analysis,” the investigators concluded.

Reference

Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and missed opportunities for end-of-life care discussions with oncology patients: A qualitative study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193

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