Tag: Conscious Dying

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Website that helps you plan for death finds success with millennials

By Rebecca Ruiz

Liz Eddy has lost track of how many times she’s told the story that led her to co-found Lantern, a website that helps people tackle the complex logistics of losing someone they love and also plan for their own deaths.

That story starts with a phone call on a Saturday morning from a nursing home with news that Eddy’s grandmother had died. Two police officers and a nurse greeted Eddy in the room where her grandmother’s body lay.

“They looked at me and said, ‘What do you want to do?'” recalls Eddy, who was 27 at the time. “I had no idea what to turn to … and really was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

“I was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

Eddy, who lost her father as a child, anticipated this moment. Her grandmother, who was frail, had done some pre-planning. She’d written a will, completed an advanced directive for her medical care, and told Eddy where she kept important paperwork and belongings.

But Eddy quickly learned that there’d been oversights, including how she might close certain accounts, stop auto-refill prescriptions, and find online passwords. Eddy figured she’d rely on a comprehensive online resource that could walk her through what to do but found none. Instead, she embarked on a “scavenger hunt of websites” for answers.

“I fully expected to find something like Lantern,” she says.

In the midst of coping with her grief and trying to settle her grandmother’s affairs, Eddy walked in the door of her best friend Alyssa Ruderman’s home, and said, “We’ve got to do something about death.”

The pair launched Lantern last fall with $890,000 in pre-seed funding. The website offers free checklists for users who need to plan a funeral, help dealing with logistics that follow a funeral, or assistance sorting out their last wishes in advance of their own death. The site has thousands of users, and to Eddy’s surprise, 40 percent of them are 35 and younger.

Lantern’s appeal to millennials speaks to a number of trends. They may help older parents plan for what happens when they die and then decide to make similar arrangements for themselves. Accustomed to having everything in their lives optimized or organized by a digital tool, the 35-and-under crowd may view online end-of-life planning as a helpful service like any other they use.

In general, talking about dying seems less taboo to many millennials. They encounter the “positive death” movement online, which aims to make conversations about death normal and routine. But millennials also live in a world that seems beset by crisis, whether that’s mass shootings, climate change, or coronavirus. Contemplating what the end looks like is part of being alive.

Anita Hannig, an associate professor of anthropology at Brandeis University who studies death and dying, says people — not just millennials — increasingly want to express their unique selves in death as in life.

The challenge is getting people comfortable enough to consider what that looks like. Eddy and Ruderman have designed Lantern to sound like a compassionate friend who knowingly takes your hand. The site isn’t morbid but instead offers practical information about the choices we can make before we die, like hiring a death doula and how to write a will. Users can compare different burial options, learn how to select life insurance, and explore how they want to be remembered online.

“A lot of people still think that if you’re talking about death too much, there’s an eerie way you’re bringing it about,” Hannig says. “In some ways, having a website like this [is] making death so much more manageable so that you can focus on the actual process of death and dying when it happens.”

Viana McFarland, a 25-year-old New Yorker, discovered Lantern after an employer-sponsored financial planning workshop prompted her to think about what might happen to her belongings and modest savings after she died. After searching Reddit and Google for resources, she found Lantern.

“There were small things I didn’t think about,” McFarland says.

That included the specifics of her burial. McFarland learned that she could let her body decompose in a “mushroom suit,” which hastens the breakdown of a corpse using mushroom spores and other microorganisms. She explored how to donate organs and leave money to the ACLU and Planned Parenthood. Most of all, McFarland wanted to spare her loved ones stress, confusion, and conflict. The time she spent on Lantern felt useful and productive.

“I guess younger people, with more resources at our hands, might become informed sooner or in a different way than our parents and grandparents were,” says McFarland.

More than three dozen articles on Lantern offer advice and insight on common questions. Its checklist offers a step-by-step guide to managing your last wishes. Tasks include making a funeral financial plan, safely storing financial information so it can be accessed by a loved one, and writing a last will and testament.

Lantern is also sentimental. The checklist prompts users to reflect on their legacy, asking about the three best decisions they ever made, what advice they’d give to their younger selves, and what they’d want their grandchildren to know about them.

“These questions were really developed because we started to realize that people don’t ask these questions of their loved ones, and it’s often the thing you think about when they’re gone,” says Eddy, who personally longs to know stories from her father’s life.

While it’s crucial to record the practical and sentimental information, Lantern must also deliver on keeping it secure. The site uses encryption and currently doesn’t collect information it doesn’t feel equipped to protect, such as passwords, wills, and Social Security numbers.

Instead, its business model is based on referring users to services that specialize in certain products, and which Eddy and Ruderman have personally vetted. For estate planning, Lantern recommends Legal Zoom. To help loved ones close online accounts, it suggests the password manager 1Password. Lantern can receive a referral fee when its customers sign up for such services. Eddy and Ruderman are also exploring pitching Lantern to organizations, like life insurance companies and hospitals, whose clients need the information the site has to offer. They’re making the same case to human resources departments who could use Lantern as a benefit for employees who, like McFarland, don’t know how to start end-of-life planning.

Though Lantern will probably offer a premium subscription to users in the future, Eddy and Ruderman are adamant that its basic how-to content and checklists will never be paywalled.

“We don’t think people should not have access to this information because they do not have means,” says Eddy. 

The company can take that stand because it’s a public benefit corporation, which means it plans to pursue a mission-driven approach while also seeking a return for investors. 

“Our vision is to be the central resource that any one person uses to navigate their life before and after a death.”

Nancy Lublin, an entrepreneur who is the founder and CEO of Crisis Text Line and the former CEO of DoSomething.org, made an angel investment in Lantern. Lublin knows Eddy and Ruderman from their previous roles at Crisis Text Line and DoSomething.org, respectively.

She said in an email that Lantern is poised to serve a “huge untapped market. Millennials, in particular, are bound to find Lantern appealing.

“How the heck are people going to deal when their parents and grandparents (fyi: enormous boomer generations) pass away?” wrote Lublin, noting that millennials use digital tools to find everything from roommates to lovers to marijuana. Of course they’d want something similar to help them manage death.

Eddy and Ruderman are aiming to become the first thing anyone turns to when it’s time to grieve a loved one or plan for the end of their own life.

“Our vision is — and always will be — to be the central resource that any one person uses to navigate their life before and after a death,” says Ruderman. “That is our North Star.

Eddy is buoyed by the possibility that she’s helping others avoid what she experienced following her grandmother’s death: “You don’t have to be forced to pick the first thing you see on Google,” she says.

Complete Article ↪HERE↩!

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Planning for death during a pandemic

By Dr. Ramy Salah

As a palliative care doctor, it is my job to sit with patients and imagine death, the distant reality that we would rather ignore. After warning a heavy conversation is forthcoming, I ask, “Have you thought about how you would want your care to look like if time were short?” The responses to questions about end-of-life care are as varied as they are familiar. “Keep me comfortable.” “I don’t want to be a burden to my children.” “If I can’t recognize my wife, let me go Doc.” Through statements like these, I learn which treatments are most appropriate for my patients on a personal level. It is my goal, after all, to make sure the care that my patients receive matches the care that they would want.

Palliative care focuses on quality of life for patients dealing with serious illness. Therefore, these conversations have become second nature to me. As precise as a surgeon is with her scalpel, I tactfully employ a combination of words and silence to explore my patients’ thoughts about transitions from health to illness, from home to hospital, from life to death. I temper my approach delicately over several visits — as the maxim reads, “Death, like the sun, cannot be looked at steadily.” This is possible with conditions such as cancer or dementia, where life expectancy can be months or even years. During the time of COVID-19, however, we may not have that sort of time.

In the last month, we have been inundated with medical information — I, for one, have tried to decipher more graphs than I would have cared to in a lifetime. From presidential press conferences to cable news to twitter feeds, we eagerly listen for the evidence to make sense of the pandemic. What are the latest numbers of cases and deaths? Which experimental treatments among the antimalarials, antivirals, antibiotics and antibodies seem promising? What are the ethical considerations on rationing ventilators in a national shortage? I am elated that medical professionals have become the loudest voices in the media, however there hasn’t been encouragement for discussions like the ones I have with my patients.

Advance care planning, or better read as “planning for your care in advance,” is generally thought of as a good idea. Though 82% of people say that documenting their wishes regarding end-of-life care is important, only 27% have completed advance directives. My patients are also reluctant to talk about death, but I have seen how much harder it is to have these discussions when they’re critically ill. I say, “In a health crisis you have to process your emotions before making medical decisions. Or you can make those decisions now before things get too emotional.” Studies show that the latter makes for a much smoother process for the patient, their loved ones and their care teams.

So, where do you start? There are three steps in advance care planning:

1). Reflection: Ask yourself — What makes life worth living? What quality of life would be unacceptable for me? There is no shortage of resources to help begin the process, including PREPARE, Go Wish, and The Conversation Project.

2). Conversation: This is the hardest step in the process, and the most crucial. This exercise is useless if you do not share your values and beliefs with those who will be involved in your care if you get sick. This includes your loved ones and your doctors.

3). Documentation: I urge readers to become familiar with two documents: 1). The Advance Directive (AD); and 2). The Physician Orders for Life-Sustaining Treatment (POLST) form. The AD names a durable power of attorney who will make decisions on your behalf if you are unable. It will also direct those involved in your care how to treat you if time were short. The pink POLST form mainly addresses resuscitation — if you were found pulseless, would you want medical personnel to carry out CPR or allow a natural death? I argue that everyone should have an AD, regardless of age or health status. Everyone with a serious medical condition, especially if they reside in a nursing home, should complete a POLST with their doctor.

In the age of coronavirus, I’m sure you, like me, have vacillated between hope and fear. Maybe you shrugged it off as unfounded mass hysteria one day and envisioned doomsday scenarios the next. Regardless, you must translate your energy into positive action. As grateful as I am to you for staying home, practicing good hand hygiene and donating protective equipment to hospitals, I urge you to begin the tough conversations and advance care planning with your loved ones. After all, it’s always too early until it’s too late.

Complete Article ↪HERE↩!

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It’s Time to Talk About Death

The coronavirus pandemic highlights how much we need to have conversations about end-of-life care.

By Sunita Puri, M.D.

Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.

I cannot sit with Joseph’s wife and children to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue as they cry. Now, because of the coronavirus, most hospitals don’t allow families to visit.

Instead, I met Joseph’s wife and children on a Zoom conference call.

“I want to apologize to you for being a face on a screen,” I began. “I wish we could talk about this in person.”

They nodded together, their eyebrows furrowed.

“I wish that I had better news to share,” I said. “Unfortunately, despite our very best efforts to support Joseph’s heart, lungs and kidneys, his body is showing us that he is getting sicker.” I watched, disembodied from a distance, as they hugged each other and cried.

His wife told me that Joseph had never talked with her about what he would want in this sort of situation. “I don’t know what he would say,” she said. “We didn’t think this would ever happen.”

Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.

In Italy, doctors have had to make excruciating decisions about which patients receive ventilators, which are in short supply. In the United States, we are already facing shortages of life-sustaining therapies; doctors will need to make these same difficult decisions.

Our collective silence about death, suffering and mortality places a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes.

Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.

Here’s how I opened a conversation about death with my own parents earlier this month: “Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”

“If I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would help me stay independent,” my mother replied.

My father nodded in agreement. “My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me,” my father told me, stirring his tea.

Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a patient’s brother told her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial. In the fall, I walked the wife of a patient into her husband’s hospital room, where they renewed their wedding vows amid cake, balloons and glittery confetti.

“This was what she always wanted,” he told me when we discussed what was most important to him. “I put it off for so long, but I have to do it before I die.”

Working in the hospital with patients suffering from the coronavirus made me ask myself the questions I hope you will ask yourselves and the people you love:

  • What is most important to me in my life? (My family and pets, and the ability to write and doctor).
  • What makes my life meaningful? (My work; dancing; being outdoors; being with my loved ones).
  • What sort of quality of life would be unacceptable to me? (Being permanently bed-bound or neurologically devastated; indignity and suffering; depending on others for personal care).
  • Who is best positioned to speak on my behalf? (My brother).
  • Who would I not want involved in decision making? (Family living abroad).
  • Would I want to undergo C.P.R. should my heart stop? (Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I’d prefer to die peacefully rather than with C.P.R.).
  • What would bring me comfort if I were hospitalized? (Pictures of my family; music I love playing in my room; prayer).

This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations. The Serious Illness Conversation Guide gives health care providers a road map of when and how to start asking patients about dying. Both resources offer the compassionate, incisive — and often unfamiliar — language required for us to ask the right questions and empower our loved ones to share specific, honest answers.

Confronting our fears about death — having a conversation about it in frank terms — can be alternately terrifying and tender. Yet knowing how to honor our loved ones’ wishes when they can’t speak for themselves is one of the bravest and most loving things we can do.

Complete Article ↪HERE↩!

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Physician Aid in Dying Used Mostly by White Patients

By Roxanne Nelson, RN, BSN

In the United States, medical aid in dying (MAID) is used mostly by white patients, even after states with more racially and ethnically diverse populations legalized the practice.

Pondering why this is the case were speakers here at the National Clinicians Conference on Medical Aid in Dying (NCCMAID) 2020 during a session on ethnic and cultural considerations in aid in dying.

Factors such as culture and religious beliefs may play a role in preventing some individuals from considering this option, but a 2019 survey from the California Health Care Foundation found that there was support for MAID among African Americans.

“When asked if race and ethnicity prevented you from getting the services and healthcare you needed, 43% of black respondents said yes, that it has happened to them,” said Thalia DeWolf, RN, CHPN, clinical coordinator, Bay Area End of Life Options, Berkeley, California.

“But when asked if they would support the right to die when terminally ill, 70% of blacks and 82% of whites said yes,” said DeWolf.

“This is surprising, since it is almost at the level of the general population, and given the unequal access to medical care and unequal outcomes, they still believe that medical aid in dying should be legal,” she continued.

“We don’t bring this up to suggest complacency, but it brings up some interesting conversation to be had,” she added.

A recent study found that in Oregon and Washington, the two states where the practice has been legal for the longest period, most patients were non-Hispanic white individuals with some level of college education (JAMA Netw Open. 2019;2:e198648.)

In 2016, MAID became legal in California, a state with a much larger and far more diverse population compared to Oregon and Washington. Even so, about 88% of people who use California’s physician-assisted death law are white, according to 2018 data from the California Department of Public Health.

Speaking to Patients

There is an overall lack of participation by black patients in all programs related to end-of-life care, noted Tracey Bush, MSW, LCSW, regional practice leader, End of Life Option Act Program, Kaiser Permanente, Southern California.

“This includes aid in dying, and we consider this lack to be a healthcare disparity,” she said.

“We would be remiss to look at the disparities and participation in these programs without thinking about the disparities in the rest of our healthcare system,” she explained. “We need to think about where the line can be drawn between education, empowerment, and recruitment,” she explained.

From a programmatic perspective, she pointed out, information, pamphlets, and staffing are designed in a way that couches the MAID decision as individualistic, but not all patients have this point of view.

“My argument is that this population doesn’t really view medical decision making in that manner,” she said. “So are we designing our materials and having conversations in a way that really speaks to these patients?”

She also emphasized the need for a diverse care team across the board with regard to ideas, perspectives, cultural beliefs, gender, and ethnicity.

Complete Article ↪HERE↩!

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The State of the Medical Aid-in-Dying Debate

Diane Rehm updates us in her new book, ‘When My Time Comes’

Diane Rehm spoke during her book kickoff event Feb. 3, 2020, at the Sixth & I synagogue in Washington D.C.

By Richard Harris

Maybe, just maybe, America’s greatest taboo — talking openly about death — is itself dying a slow death. Too slow, if you ask Diane Rehm, author of the new nonfiction book, When My Time Comes.

“Until we overcome our fear about talking about death,” the longtime NPR host says, “few of us can have the end of life we envision. We’ve been so focused on living and accomplishing and moving forward that we don’t think about death as part of life.”

For 37 years, Rehm’s morning talk show — first on Washington, D.C.’s public radio station WAMU, then on NPR — allowed her to focus on living, accomplishing and moving forward. But that changed as she witnessed her husband of 54 years, John, decline to the point where he pleaded with his doctor to prescribe him a medication to end his life. And without a medical aid-in-dying law in Maryland, his doctor refused.

So, John Rehm, wracked by Parkinson’s disease, with a severely diminished quality of life, decided to starve himself to death. No water. No food. No medication. It would take him 10 days to die.

And that began Diane Rehm’s journey into advocacy. After signing off her talk show in 2016, she has immersed herself in the world of the terminally ill and studying the limited options available to those for whom palliative care (focused on relieving pain and symptoms) is not the solution to their end-of-life misery.

“We focus so much on happiness and joy surrounding birth, but we think about death as this place no one wants to go — but we’re all going there. Everybody is,” says Rehm in her office at WAMU, where she hosts the podcast “On My Mind.” A February 2019 episode discussed end-of-life issues and why so many people’s end-of-life wishes are not realized.

Discussing Aid in Dying

For several years, Rehm, 83, has crisscrossed the country, speaking to the terminally ill and their families, as well as advocates and opponents of medical aid in dying. She also talked to ethicists and physicians on both sides of the issue. It’s all part of an emerging national conversation about the right to die that Rehm has captured in her new book.

A companion public TV documentary of the same name as her book to be presented by WETA in Washington, D.C., is due out in the spring of 2021, and is being shown at festivals. See the trailer here.

During a speaking engagement in a church in Falmouth, Mass., Rehm asked audience members to raise their hands if, “you are one of those people who is not going to die.” Not a hand went up, of course, and it provoked a lot of nervous laughter.

Some of the crowd had gathered at that church for a “death café,” part of a movement that began in Europe in 2004 in which people of all ages talk candidly about dying, their fears and hopes for the end of life. It’s a sign that America’s reluctance to bring death out of the shadows may be fading.

The medical aid-in-dying movement for the terminally ill — some call it death with dignity —began in Oregon in 1994. It took another 14 years for Washington state to pass its law. “But since then, Montana (2009 State Supreme Court ruling), Vermont, California, Colorado, Washington, D.C., Hawaii, New Jersey and Maine have followed suit.

Each jurisdiction allows a patient who has no more than six months to live (certified by two physicians) to request a lethal dose of medication as long as that person has the capacity to decide and can self-administer.

Changing Minds on Medical Aid in Dying

More than a dozen other states are considering such a law, including Maryland, where Rehm testified last year in support of medical aid in dying. The bill lost by a single vote in the state Senate. But supporters, including the bill’s sponsor, the Maryland House of Delegates’ Shane Pendergrass, are optimistic that the End of Life Option Act will pass this year.

“Everyone is one bad death away from supporting the bill,” Pendergrass, a Democrat from Howard County, said during a news conference in January 2019.

Case in point: Maryland Del. Eric Luedtke, a Democrat from Maryland’s Montgomery County, who originally opposed the legislation. “The two biggest things that gave me pause were the concern about normalizing suicide (three of his family members had attempted suicide) and that some folks in the disabilities community believed aid in dying could be abused,” he told Rehm, who included his comments in her book.

Then, Luedtke’s mother, stricken with esophageal cancer, was in extreme pain — even with palliative care. A few days before she died, “she got the bottle of liquid morphine she had been prescribed, tried to drink it, tried to commit suicide,” he said.

A few months after his mother died, Luedtke signed on to the bill. “I began to question whether I had the right as an elected official, or even as her next of kin, to make that decision (of whether she could use a lethal prescription),” he said. “I think her death would have been less painful and there would have been more closure, had that option been available to her.”

Joe Fab, producer and director of Rehm’s documentary, became interested in end-of-life issues after his sister and both his parents died within four years. “We are just too frozen up in this country, talking about death,” he says.

The Core Conflict

Dr. Lonnie Shavelson, a former emergency room doctor who founded Bay Area End of Life Options in Calfornia, distilled the complex debate surrounding medical aid in dying, to a phrase, included in Rehm’s book: “You’ve got the ethic of autonomy against the ethic of maintaining life.”

The American Medical Association sides with maintaining life, opposing what it still calls “physician-assisted suicide” because the group says it’s “incompatible with the physician’s role as a healer.”

The question that remains unsettled in the context of the physician’s Hippocratic Oath is whether a doctor does more harm than good in writing a lethal prescription for a suffering, terminally ill patient.

The Catholic Church and other religious groups have not given their blessing to medical aid in dying. Diane Rehm is quick to say she respects all opposing views, but remains steadfast in her support for the terminally ill individual choosing when his or her life should end.

The public likely associates two people — Jack Kevorkian and Brittany Maynard — with medical aid in dying more than anyone else. Kevorkian, the controversial pathologist who assisted in the deaths of 130 terminally ill patients in the 1990s and was sent to prison, kicked off the national debate over the right to die.

But it was Maynard who put a new, young face on the right-to-die movement and perhaps did more than anyone in accelerating the growth of laws. Given six months to live with a brain tumor, Maynard moved to Oregon to take advantage of that state’s death-with-dignity law. Before she died on Nov. 1, 2014 at 29, her videos promoting medical aid in dying went viral.

Rehm’s Take on the Subject

At the conclusion of Rehm’s book and documentary, she asks her grandson, Benjamin Zide, a Dartmouth sophomore studying medical ethics, to pick up his phone and take a video of her as she described what would be for her a “good death.” Here’s what she says:

“I came across a perfect paragraph that Anne Morrow Lindbergh left behind. She wrote, ‘To my family, my physician and my hospital: If there is no reasonable expectation of my recovery from mental or physical disability, I request I be allowed to die and not be kept alive by artificial means and heroic measures. I ask that medication be mercifully administered to me for terminal suffering, even if it hastens the moment of my death. I hope that you who care for me will feel morally bound to act in accordance with this urgent request.’”

Last night, as Rehm kicked off her book tour at Washington, D.C.’s Sixth & I synagogue, she recounted her mother’s suffering before dying at age 49 and how John Rehm’s father and mother committed suicide. So, the subject of death was part of the conversation at their dinner table, even before John was diagnosed with Parkinson’s.

Diane Rehm says she told her husband, “When my time comes, I need some help from you. I don’t want to live to the point where I’m sick and infirm and cannot take care of myself.” And, she says, “John looked at me and said, ‘I feel the same way.’”

Complete Article ↪HERE↩!

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Protecting Trans Bodies in Death

Your life. Your death. Your rights.

***SELECTED SOURCES/ADDITIONAL READING***

“DYING TRANS: PRESERVING IDENTITY IN DEATH” http://www.orderofthegooddeath.com/dy…

“The Supreme Court is finally taking on trans rights. Here’s the woman who started it all.” https://www.vox.com/latest-news/2019/…

“R.G. & G.R. HARRIS FUNERAL HOMES V EEOC & AIMEE STEPHENS” https://www.aclu.org/cases/rg-gr-harr…

“A transgender woman wrote a letter to her boss. It led to her firing — and a trip to the Supreme Court.” https://www.washingtonpost.com/nation…

“Transgender woman dies suddenly, presented at funeral in open casket as a man” https://www.miamiherald.com/news/loca…

“Transgender People Are Misgendered, Even in Death” https://www.vice.com/en_us/article/ex…

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Getting Familiar with Life’s Certainty: The D-Word

“I’m gonna die, you’re gonna die. So is everyone we’ve ever loved and hated. And that’s OK.”

By Molly Marco

When I thought about what to write for my End Well blog post, I struggled to think of something different than what I submitted last year. The story I share in last year’s piece is one I’ve now told a million times. I know it well — where to put the emphasis (“Ever onward!”) and what will get the audience’s applause. Conversely, I know what parts of my story people may want to deny or avoid: Death. Dying. Fears and deficits that come with a brain cancer diagnosis.

In July 2016, my brain tumor was discovered after I fainted off a bar stool at a downtown Detroit coffee shop. Turns out, it wasn’t just a simple faint: I had a grade 3 anaplastic astrocytoma. A grade 3 astrocytoma is a junior glioblastoma (or, more accurately, a glioblastoma is a grade 4 astrocytoma). It is incurable and considered a terminal diagnosis, though many patients prefer to call it a chronic illness. That doesn’t mean I’m dying tomorrow — unless, as my neuro-oncologist once told me, I get hit by a car or something like that — it just means we don’t have a fix.

We expect my tumor to, maybe, charge up and for those rogue astrocytes to return — either as anaplastic astrocytoma again, or GBM. One or the other, no lesser. I won’t get better, we just hope that we can hold it off as long as possible before its encore performance. Worse than reoccurrence or GBM? There’s not really anything worse. It’s a turd sandwich.

Though come to think of it, there is worse. Worse is denying that reoccurrence is possible. Worse is convincing myself that I am cured and “cancer-free” (no brain cancer patient should ever be told that falsity) only to crumble and fall to pieces when new growth appears on a future MRI.

After Molly finished her chemotherapy, she got this tattoo. | Memento Mori: Remember you must die. Amor Fati: Love your fate

Worse is not mentally planning for future treatment, including palliative and end-of-life care. When to demand my off-switch to be clicked, so my family isn’t left making the difficult choice for me.

There may come a time when I can’t write and I can’t speak, so I plan to make these decisions while I’m still in control of my think-box.

Losing my mom last year and my aunt recently brings certain things to the forefront of my now with urgency: Death is guaranteed. Death will happen. I want to be ready. Not because I’m morbid or depressed, but the opposite of that. The thought of leaving this world — everyone and everything I love — scares me. The thought of the act of dying scares me more than death itself, to be honest. I need to be on better terms with death and dying.

If death is anything like falling off a barstool and passing out, I can handle that. The thought of an eternal afterlife I can’t even comprehend, but that sounds cool, too. But dying in pain and afraid? That is what I fear. I don’t want that. However, I choose to talk about it so I am as familiar with death and dying as I am with my own name. It’s not because I crave death, it’s because I love being alive with every fiber of my being. I love life so much.

And if we’re honest with ourselves, we can admit that in loving life — truly loving life — we can accept death as a thing we all do. There should be no stigma attached to something absolutely guaranteed from the moment we come into existence: I’m gonna die, you’re gonna die. So is everyone we’ve ever loved and hated. WE ARE ALL GOING TO DIE. That’s that. And that’s OK.

Last year, I suggested we live our best lives and live them right now. This year? Live our best lives, live them right now, because one day — you are going to die. Learn to let it be OK. And be ready.

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