Everything Dies

It’s the Buddha’s basic teaching. It’s life’s universal truth. It’s what we most want to deny. Sallie Jiko Tisdale on how this hard but liberating truth can transform your life.

Death and Life” by Gustav Klimt.

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Most Buddhists put flowers on the altar. We know flowers are beautiful, but that isn’t their purpose here. Flowers begin to die as soon we cut them; we carefully lay death in the place that symbolizes our awakening. We bow and make offering to this crucial truth, built into the bones of the world.

The Buddha spoke volumes of words, an immense canon, but most of what he said comes down to this: Things change. Change cannot be avoided. Change hurts. The fundamental teaching of all Buddhism can be stated as everything dies. The Buddha taught this, it fills the sutras, it is repeated by our teachers. But most of all, we learn this from our own daily lives.

Do we believe that we will dissolve? No. Not deep down in the root of the small self, because the small self plans to live forever.

You have probably learned a traditional formula or two for this insistent teaching about the transitory nature of all things:

Anicca vata sankhara: “Impermanent, alas, are all formations!”

Sabbe saokhara anicca: “All conditioned factors of existence are transitory.”

In the Maha Satipatthana Sutta: “[One] abides observing the phenomenon of arising…abides observing the phenomenon of passing away…”

As a new practitioner, I learned the catechism this way: “All compounded things are subject to dissolution.” The language was strange when I first heard it, and as a young practitioner I found myself parsing the words: Compounded. Dissolution. Notice, I was told, how everything is put together from other things and will be taken apart. I began to notice. A table, a house, a nation—I could see this.

But if all things are compounded and will dissolve, then I am compounded and I will dissolve. And this was not something I could easily accept.

I pretend to accept my own death. Most senior practitioners do; many of them may even believe they accept it. Buddhists have their own peculiar points of pride, outside the usual stream of things we pride ourselves on, like humility and asceticism. Plenty of us are proud of our equanimity in the face of extinction, at least until we see the headlights bearing down.

So how deep does this acceptance really go? It’s not just Buddhists who kid themselves about being prepared for death. It’s people. It’s all of us who don’t want to admit that we are organisms fighting for life, that we can sagely repeat, “Annica, annica, all compounded things are subject to dissolution,” without really confronting what it means.

Do we believe that we will dissolve? No. Not deep down in the root of the small self, because the small self plans to live forever. When we say that “Everything dies,” we mean everything dies but me. And we can get kind of fancy about this point: Everything dies, including my body (but not my awareness—not me). Everything is subject to dissolution, but something passes through to a new form and doesn’t ever go away (that’s me). In a thousand ways, most of them not entirely conscious, we hold on to the hope that something of this self, somehow, will remain, and we hold on to that even as everything we touch slides away like sand in running water.

Why should we pretend to more confidence than we feel? Everyone is a beginner when it comes to death. We can’t practice it. When my mother died, it was the very first time that my mother died, and I didn’t know how to do that, to be a daughter whose mother was dying, to be a daughter whose mother had ceased to exist. When my best friend died—when my teacher died—I didn’t know how to do it. Each death I’ve known has been the very first one of its kind. Even with experience—I know how grieving feels, I know the altered state of a vigil, I know a lot about that—I can’t entirely prepare. And when I die, it will be the first time this particular me dies, and I will be a beginner.

Yes, I know that we are all dying all the time. That’s what it means to be a compounded thing dissolving—this self, this moment, gives way to the next as the girl gives way to the woman who gives way to the crone. I know that the me of today is not the me of yesterday, and I was also taught that if you die once, you never need to die again. But the real teaching of that formula, the falling away of body and mind for a ceaseless moment, is that you are already dead. I know this, but I don’t think my body does.

Slay the demons of hope and fear. My teacher would say this to me at a time when I was knocking up against deepening anxiety. My stubborn refusal to submit to the meaning of that anxiety made me more anxious still. The stronger I resisted, the deeper my anxiety became, until I sank well into true fear. How could I slay that demon when I was afraid to walk out the door?

We need to talk about death bluntly, honestly, and often.

“Vanitas Life, Death, and Resurrection by Ezio Gutzemberg.

The original Pali word for aversion, dosa, is various and shaded. It can be translated as anger or hatred, denial, projection, distortion, aggression, repulsion, even disgust. That is how it can feel to talk about death, about our own death. But I want you to think about it and I want you to talk about it. Even if you have considered your own death deeply, how often do you talk about it? Do you talk about your private conflicts or confusion, your questions, your plans?

How do we begin? Begin with the fear. Begin with the resistance. We know the question. It is why we begin to practice in the first place: Why do we suffer? And we know the answer. It is why we keep practicing: We suffer because of change and resistance to change.

But knowing the answer does not stop the question from being asked, and knowing an answer today doesn’t mean we will remember the answer tomorrow. Ignorance is the first link in the twelve-fold chain of causation—ignorance of impermanence, of anicca, of anatta, of no-self. This chain feeds itself endlessly—our ignorance of the ephemeral nature of the self building a self over and over. The chain is broken only by the transformation of that first mistake, being ignorant about the compounded nature of the self, which is not separate or bounded at all.

What do you fear about death? Make a list. Be honest. Autopsy? Being alone? Pain? Loss of privacy? Do you fear soiling your bed? Do you fear needles? For what do you hope? Make a list. Be honest. Do you want to see it coming? Do you want to be asleep? Do you want to be very old?

Ask the question again. Why am I afraid? Because I will die. What does that mean? (Wait a minute. Will I die? Do I have to die?) Ask yourself: Are you ready to die? Don’t answer too quickly, because that last one is a doozy. Even people who have made great strides in accepting the fact of their own inevitable dissolution will be flooded with adrenaline when the headlights bear down. The body has its own hopes.

Talk about death. Talk about everything. Imagine it. Write a description of the scene of your death. Where are you? What do you see? What do you smell, taste, touch? Who is there? Are you inside or outside? Is it warm or cool? Is there music, or words?

Imagine it. Write it down. Then tell everyone who needs to know—your family and friends and teacher and doctor—what you want. Make a record of your wishes and don’t forget to decide how your body should be handled after you’re done with it. Make copies and pass them out.

Then tear it up. Let it go with all your heart. This will be the work of the rest of your life.

We can do all this. We can make a plan, buy a plot, fill out the advance directive, decide what music we want to hear as we go. But we can’t plan not to die. The essence of dying is the loss of control. This is the hardest part for many of us—not that death will happen, but that it will happen without our hand on the controls. It will happen as it happens, when it happens, where it happens, and chances are it won’t go according to plan. The only thing we can control, and only with practice, is how we face whatever happens.

These days it is common to talk about a “good death.” (There are many official, even government-issued, definitions of a good death.) A good death is usually defined as one where a person is comfortable and at peace.

For myself, I want to think about a right death, a death that fits the life I’m trying to live. Most deaths include what anyone might call good moments and bad moments, desired and undesired consequences. So it is with our lives, and so it is with death. Right deaths are all different; you can’t define the details. For me, it means a death unhidden—from me and from those who love me. It means a death met with grace and willingness when the time comes. Achieving this will be the work of the rest of my life.

If we can face it, recognizing the reality of death will transform our lives.
Flowers are beautiful because they are brief. Beauty is a measure of fragility and brevity and transformation, created in part by our awareness of the precious value of this moment—this moment is what we love. Death is utterly natural, shared by all; it is also heartbreaking. That equation isn’t dissonant; it’s the nature of love. With our eyes open to change, each thing we meet is luminous and sparkling. To love means to lose. To lose means to love. The last breath allows us to cherish another without reservation, holding nothing back.

Slay the demons, my teacher told me. That meant accepting my anxiety, my fear. It meant coming to see that hope and fear are one thing: fantasies of the unborn future. Hope pulls and fear pushes and together they keep us stuck in what has not happened, living a half-life of imaginary events. I exhausted myself on that mountain, until I gave up. Giving up was the key. Accepting the demons of hope and fear until they slew me, which was what my teacher had been saying all along.

The parable of the burning house told in the Lotus Sutra is a familiar one. The children do not know the house is on fire, so they won’t leave until their father tempts them with carts full of treasure. So we are with our own suffering, our ignorance. The Buddha offers us treasures, including one so great we couldn’t even imagine it.

Some years ago, I had a brief, vivid dream. I saw a room completely engulfed in flames, and several people were walking calmly through the room, smiling. One turned and looked at me and said, “I can’t tell you how safe I feel in this house.”

When I begin to truly accept myself as this compounded thing—a dewdrop, a bubble, a cloud—when I really believe for a moment that my precious me is a passing sigh in the oceanic cosmos of change, then I begin to find safety inside the burning house. I don’t need to escape if I know how to live inside it. Not needing to escape, I no longer need rewards. I just walk through it, aware of dissolving.

Complete Article HERE!

‘I Run a Death Cafe’

By Megan Mooney

I’ve been interested in death my entire life. I was going to be a mortician, and then I took a grief and loss class in college and switched degrees. I’m now a social worker. But I had always wanted to do something on a macro level to help my community around issues of death and dying.

In 2012, I was completing my social work practicum at a hospice and the team leader there wanted me to do some community involvement work. She told me she’d read an article about a “death cookie” group. I talked to my boss and she explained the correct name for the organization was Death Cafe and told me to get in touch with Lizzy Miles, who had started the cafes in the U.S. that year, after reading about them in the U.K.

It happened to be around the same time my uncle had died of cancer; he’d had a horrible death. So I really wanted to create a group where people could come and talk about death and educate each other. After I emailed Lizzy, she called me and we talked for hours.

She helped me get my first death cafe started in February 2013 at a coffee shop in town. The cafes were starting in LA, Atlanta and New York, but I’m in a small town called St. Joseph in Midwest Missouri, so there were none around my area at the time. At my first death cafe and for the five after, I had two women who would drive 7 hours each way to attend. That showed me how much people needed this safe place to talk about death and dying.

We have coffee and cake at each session and my first cake said “Missouri’s First Death Cafe” on it. I laugh about it now because I got so much cr*p for that cake. I went to a big grocery store and told the lady there that I wanted little headstones on the cake. She got mad and told me it was a family business. I had to explain to her what I actually needed the cake for.

But people still thought we were going there to “drink the Kool-Aid” and die. Before my first death cafe a local hairdresser said that an older woman had read a news article about it and was talking about how it was a morbid group getting together to do God knows what. A lot of people still think it’s a morbid group.

Every death cafe is different in terms of who attends and what the attendees talk about, but we all follow the same rules: It’s not a grief or counselling service, we are non-profit, the cafes are held in an accessible, respectful and confidential space and they have no intention of leading people to any conclusion, product or course of action. We also always offer drinks and nourishing cakes! Having food is very important. It is life sustaining and we believe it helps people to feel more open to talking about death.

There were about 20 people at my first death cafe and their ages ranged from 25 to 70. It’s for adults, so 18 and older but I’ll have people of all ages; the oldest attendee I’ve had was 85. But I’ve only ever had one person come who was terminally ill.

When I host, I have four or five people at each table and at the beginning I ask everyone to start with what brought them here to talk about death and dying. That seems to be the only thing I need to ask.

My dad and aunt came to my first death cafe. My father never talked about death and my aunt hadn’t been able to talk about my uncle’s recent death without crying, so I didn’t know how it would be. But as I was looking around, my dad was laughing with his group and my aunt was laughing with hers. I sat down and heard my aunt talking about my uncle’s death without crying for the first time.

The following week my dad called me and was talking about how you’re not supposed to make any big decisions within the first year of a loss. He then told me he’d learned that from the ladies at his table at the death cafe.

My dad came to every single death cafe I held after that, except one, and he planned his funeral and all his funeral songs. He died three years ago, but his death was easier for me because we’d had all these conversations about it. He talked all the time about how much the death cafe helped him face his own death.

Death cafes run all over the world
Megan Mooney has been running death cafes in St. Joseph, Missouri since 2013.

A theme that often comes up is relationships and death. People will talk about losses they have had and how it impacted them. Everybody has experienced a death in their life and most of them have never really talked about it. I had a lady who came in, she was probably in her late 50s and she was really shaky at the beginning. At the end she came and thanked me and said that she had never been able to talk about death with anybody before because in her family it was a “taboo”.

People also talk about what they want at the end of their life. There can be a superstition that talking about death brings it closer, so people avoid talking about it at all costs. But when you don’t plan for the end of your life it can be harmful to your loved ones, or add to their grief. My dad making plans helped me tremendously and it was cathartic for him too.

While there are sometimes tears, most death cafes are full of people laughing and having a good time. I believe that thinking and talking about death helps us to be our authentic selves. It helps us to take our mask off and not take things for granted. We’re often in such denial about death that we hurry through life and don’t appreciate the people in it. At these cafes, you get together with strangers and you’re talking about an intimate topic that most people can’t even talk about with their family. It brings you closer and helps improve your relationships with people.

At the end of each death cafe I ask attendees what their “Aha!” moment has been and I hand out surveys. One of the questions is: “Did your views on death change as a result of the death cafe?” It’s crazy because almost every time people answer something like: “My views on death didn’t change but my views on life have changed.”

When COVID first hit we decided the death cafes had to be online. But it ended up being a blessing in some ways because it meant we could meet with people in different countries all over the world at the same time. Now we’re back meeting in person, but we do have cafes online too.

Death cafes began in the U.K.
Megan Mooney first started running death cafes in 2013. She has now run 45 death cafes with hundreds of attendees.

I’ve run about 45 death cafes since 2013 and the smallest group I’ve ever had was still 10 people. I’ve also had companies ask me to host death cafes for their staff. I had one life insurance company with 1,500 staff and there was a woman there whose son had died by suicide. When I asked if anyone had any “aha!” moments, she stood up and shared how she felt about her colleagues’ reaction to her since she had returned to work.

Being involved with Death Café has taught me to love with my whole heart and that nothing in life is permanent. I’ve learned how to accept change, which can be hard. And, I’ve realized that relationships matter the most in life: my relationship with my daughter and spending time with her. That used to include my dad too, he was my best friend.

As a leader for Death Café, I have learned tremendous lessons from attendees and our followers on social media. I’ve learned that so many things in life are trivial. I don’t really get upset any more. Our views on death usually inform the way we live. When you start to come to terms with your own mortality, it can push you to really live your life and to be the best version of yourself. If you look at life from the vantage point of death you can see how beautiful it is.

Complete Article HERE!

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!

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!

Of Death and Dignity

By Michael Dunn

In just four years, four States have passed ‘voluntary assisted dying’ laws to permit doctors to help terminally ill patients kill themselves. In the two remaining States, Queensland and NSW, similar draft Bills await debate. ‘Dying with dignity’ rallies the supporters of these laws. Is it dignified to kill oneself? Is dignity lost in struggling on in pain and suffering? The story of an elderly woman who died from Alzheimer’s dementia offers some answers to these questions.

Of Alzheimer’s, an American doctor wrote more than thirty years ago, in a popular book about dying: ‘There is no dignity in this kind of death’[1]. If you had chanced to walk into the elderly woman’s room, when she lay dying, you would have seen her wasted body unable to eat, drink or move herself, heard her speechless, ragged breathing, and looked at her static eyes. No dignity was on display.

Five years earlier, she lost her wedding and engagement rings. She had worn them every day of her married life. The loss distressed her. They were precious gifts from her husband and a part of who she was. She suffered an indignity. People would look at her left hand and see her as unmarried, or as something worse if they knew she had a husband whose rings she had discarded. Her husband, though often quick to anger, suffered the loss with surprising forbearance, as though extending his dignity to her, to compensate her loss.

Time passed, and she noticed how much longer and more complicated the routines of her life became. She had not read yesterday’s newspaper by the time today’s arrived. She had to go the hairdresser’s just when she was supposed to be making a family lunch. At afternoon tea, her leaden cake bore witness to the ingredient she forgot. Odds and ends of food inhabited the fridge and supermarket plastic bags ran riot in the garage. Disorder was creeping into the home. Suddenly, one Sunday lunch she passed out in her chair. In hospital, they cured the infection that overcame her, but her mind grew noticeably worse. Still competent, she gave her husband and her son powers of attorney and guardianship. This gift of trust, made as her own strength weakened, bound her husband and her son together in a duty for her care, a dignified and elevated role.

Her husband’s spirit steadied her, but his physical strength declined. Some months later, he suddenly became fevered and delirious. She called the ambulance, and they took him off to hospital for treatment. Being alone unbalanced her. Her phone calls became confused. When going out, she kept forgetting her keys and her next-door neighbour had to rescue her. The couple had to move into a care home. She could no longer fill her office as keeper of the home. She lost another dignity.

A photo taken on the moving day shows her, grave and seated, in her strange new room. She grieved at what was happening, but did not fight against it. She missed the freedom and the power to cook and clean. The organised activities and outings meant nothing to her. She wandered, sometimes going into other people’s rooms and taking clothes to wash. One Saturday she wandered out the entrance hall, and ended up confused but in the park she loved to walk in near her former home. A passer-by took her to her former next door neighbour’s place, and the neighbour drove her back to the care home. From that day on, they marked her as a ‘flight risk’, a potential escapee, another loss of standing.

The dignified person bears themselves in a manner that fits the occasion. Every six weeks or so, the family went out to a restaurant. At first, she took care over her appearance and put on her good clothes. Then dressing became confusing, and she mixed her clothes and wore two skirts at once. When going out, her son became her dresser, restoring the dignity she could not put on for herself. A year or so later, going to a restaurant disoriented her so much she could not eat her food. In time, even in the care home, she needed to be fed with all her meals, like a young child.

Her conversation splintered into fragments — some light and meaningful, others random or irrelevant. She soon stopped speaking altogether, a daunting silence that turned away her visitors. Her son recalled the story of a woman in a coma and her daughter who read aloud to her. When the coma ended, she told her daughter that the reading was the thing that kept her sane. So the son read aloud the poems his mother used to read him, and her husband read her stories which he always did so well. The reading broke the silence with a laugh or smile of recognition. She seemed lost to the world at large, but stayed present to her family and her carers. They gave her what she needed — the rhythms of her language, stories in which to dwell and a regularity of life.

The brain instructs the body, so as it perishes the body fails. Even in her eighties, she had walked everywhere. Seeing her smile could not repress the jolt of noticing a carer on each side walking her along the hall. Some months later, she could not walk at all, and spent all day in a chair and bed combined, made for those who cannot walk or hold themselves erect — a ‘princess chair’ they call it to dignify a sad decay. At the end, her epiglottis, guardian of the windpipe, no longer knew the difference between air and food. She could no longer eat or drink without the risk of catastrophic choking.

The vigil began. Morphine eased her pain, gel soothed the dryness of her mouth and nurses turned her body.  Her husband and her son watched and waited. On the sixth day, her husband asked: ’Does she even know I’m here?’ ‘Yes’, the senior nurse replied. ‘How do you know?’ he asked askance. ‘When you spoke, the rhythm of her breathing changed and she became relaxed’, and so it had. On the eighth day, in the morning, she looked at her husband and her son with a glance they knew was hers. In the silence one can miss these little signs the dying person gives to those they love.

Her suffering and destitution gave birth to a community of care and dignity around her. When lost, her neighbour took her in and drove her home. In care, they nursed and washed and fed her. Her husband loved and cherished her, as he promised at their wedding. Her son sought to honour her and guard her interests. A volunteer brought in a friendly dog for her to stroke. A man who cleaned toilets and bathrooms said: ‘The residents are our friends; although we are sad, because we know we will lose them’. In the last days of her life, individual carers would be found sitting quietly with her, sometimes holding her hand.

Now, a darker and despondent care exists for those whose illnesses are terminal. Doctors may prescribe and even carry out the fatal steps to kill their patients, if those patients ask them. Subject to detailed restrictions and procedures, the laws declare this is no crime. Where the laws mention ‘suicide’, it is only to declare its non-existence in this gloomy form of care. The death certificate issued to the family and executor must not record the patient died by their own hand, or with ‘assistance’, but from the disease that was expected to kill them. This untruth ‘protects the privacy of the person (and possibly their family too)’[2]. This privacy also hides the doctor’s role. Dignity means ‘worthy of honour and praise’. Dignified acts are known and celebrated, not kept in shame and secret from the public record.

Helping someone die begins with seeing suffering and wanting it to end. The vet shows mercy who kills a badly wounded animal when no treatment will succeed. The doctor shows mercy who gives morphine to the patient to relieve their pain, despite foreseeing, though not intending, that the drug itself will hasten their patient’s death. If the patient pleads for death and is dying anyway, the extra step of helping of them might seem merciful as well. This extra, fatal step abandons what is just and true. Death is not a personal entitlement. Life arrives without permission and gives no warranties against illness, pain or suffering. We cannot judge our own life’s worth. We have no right to implicate a doctor in a pact of suicide.

Nobody knows in advance what strength they may find in a contest. In many cases, those who seek ‘assisted dying’ do so out of fear. Tasmanian law acknowledges this fact. It says a person is suffering intolerably if, among other things, they persistently suffer from ‘anticipation of the suffering, or expectation, based on medical advice’[3]. Agony, against which the body fights, comes from the Greek agonia  — a struggle for victory. Fear and anguish are the enemies of life that urge sufferers to kill themselves. We are not competent to judge those who kill themselves, but feel a sadness in the life not fully lived. We dignify the runner that completes the race but dies exhausted at its end; we sorrow for the one who quits mid-course. Suicide silences life’s calling and shuts the book, abandons hope and blows out the candle.

Healing and relief from pain, and a promise to do no harm, united the community of medicine. From specialists to cleaners, everyone assumed a unity of purpose.  Together, they pushed death back and moderated pain. Having done so much together, this unity, once reserved exclusively for healing, is broken — causing death is now declared a healthcare practice. A new principality is born, an independent sphere of power, carved out for helping people to their deaths. It brings within its scope doctors, nurses, psychiatrists, pharmacists, those who issue, receive and dispose of fatal drugs, and even interpreters for non-English speaking patients. Public servants issue permits, register practitioners, authorise their training and organise a community of assisted dying practice[4]. Advocates of assisted death get appointed to its boards and offices. Over the past four years, each State has broadly followed the model in Victoria, from 2017, but with some variations that generally made the rules less strict in various ways[5]. The downward slope has slipped.

Let us return to the woman dying with dementia. In her agony, she struggled tenaciously for victory over death. At times she sank so low, her death seemed imminent and then she struggled up for air again. To share in someone’s agony takes on a share of their distress, of their sinking down and surfacing again. Why could she not depart in peace? Could a nurse or doctor help her death along and spare her struggle and the grief of those who mourn? Sharing in distress can confuse one’s motivation. For whom is mercy truly sought: the patient or the keeper of the vigil? The nurses and the doctor owe their duty to the patient, and never, until ‘assisted dying’ was made law, could seek the patient’s death. So they saved the keepers of the vigil from complicity in death. Nobody knows why the dying person struggles on — perhaps they have some task to finish, perhaps they want to show us something or perhaps their destination is not quite ready.

Before dawn on the tenth day, the woman died. The son took the news to his father. The father hugged his son, and all that had ever divided them was reconciled. They went to her room to see her. She looked serene at last. Her husband, not a churchgoer, recited the Lord’s Prayer. A disengaged observer might only see her losses, and say she lost her dignity. Those who loved and cared for her saw much more, because they knew her ways and saw her signs. They lent her strength and dignity which she returned to them in full, a thing no suicide could ever do.

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!