Tag: Conscious Dying

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Struggling to die in peace:

A family fights to turn off a pacemaker

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible.

By Jennifer Friedlin

For the past month, my mother and I have been advocating for the deactivation of my father’s pacemaker. Yet despite my parents having taken every measure to ensure that they would control the ends of their lives, two months since a severe stroke destroyed whatever quality of life my father, who was already suffering from advanced dementia, had left, his heart continues to beat against my family’s wishes.

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible. Reaffirmed last year, the statement says, “Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.”

Nevertheless, the team of medical professionals at Parker Jewish Institute for Health Care and Rehabilitation has given us the runaround. Most recently, my mother and I met with my father’s team of medical professionals to discuss moving my father into hospice as well as deactivating the pacemaker so that my father could live out his days naturally. During the course of the meeting, my mother, who is my father’s proxy, made clear that this would be my father’s wish.

According to the law, the request is my mother’s prerogative. In 1990, in Cruzan vs. Director, Missouri Department of Health, the Supreme Court ruled that a competent patient could refuse life-sustaining treatments, including nutrition and hydration. This case gave rise to advance directives so that a proxy could carry out the patient’s will. In a later case, the Court affirmed the right of competent patients to refuse therapy.

The medical team agreed to hospice, but has so far refused to carry out the request to deactivate the pacemaker. We have had several long conversations with the medical team, and, while they seem to agree with our desire to give my father a dignified end, they offer confusing explanations as to why they will not carry out my dad’s wishes.

At one point, a staff member told me that because a pacemaker does not prolong life, we should leave it. But my father’s pacemaker is working 53% of the time to correct his condition, known as bradycardia, which can result in heart failure. I fail to see how this device is not prolonging my father’s life or, at the very least, interrupting the possibility for his natural demise.

We are certainly not the first family to confront the medical community’s refusal to deactivate a pacemaker. Katy Butler, author of “The Art of Dying Well,” has written extensively about her efforts to give her father the death he wanted by deactivating his pacemaker. Butler also uncovered other horrors, such as cardiologists recommending pacemakers for elderly people with advanced dementia.

Much of the motivation, Butler noted, seemed to stem from the financial rewards of treating people, even the terminally ill. Simply put there’s no money in death. And yet in its current design, at $450 a day for room and board alone, institutions like the Parker Institute rake in millions annually from people whose lives are being maintained artificially. The medical system could quite literally bankrupt healthy family members to keep a dying one alive.

Although estimates vary, each year approximately 400,000 people — half over age 75 — get implantable cardiac devices, including pacemakers. Primary care doctors, cardiologists, and elder care attorneys should inform people about how these devices can affect their end of life and encourage them to include their wishes in advance directives.

Yet, even if they do, they may hit the same wall of refusal my family has faced. It seems that despite the legal rulings and the ethicists’ writings, doctors are committed to keeping pacemakers ticking.

It’s unfair to the terminally ill and their families that this view prevails. The refusal to deactivate means the sick family member is denied a dignified death, while the need for constant advocacy leaves family members feeling like they are making an unseemly demand.

As the debate about healthcare builds in the run up to the 2020 presidential election, I hope that the candidates will discuss reforms to improve end of life care. There should be dignity in death for the terminally ill and no healthy person should be forced into bankruptcy to keep a loved one alive against his or her will. There are certain people we should spare no expense to keep alive, in our family’s opinion my father is not one of them.

Complete Article ↪HERE↩!

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Scared of death?

An end-of-life coach might be the answer

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You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance. 

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.”

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article ↪HERE↩!

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‘Dying is so medicalised. It makes people fearful’

The founder of Soul Midwives on how greater compassion and care can lead to people having a more gentle, tranquil death

Felicity Warner: ‘We need to take the care of dying people back into the community.’

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Felicity Warner wants everyone to die well. She is the woman behind Soul Midwives: non-medical companions who provide one-to-one holistic and spiritual care to people who are dying. The term “midwife” is no accident. It refers to the similarities between drawing our first breath and our last. Just as there are certain stages for a woman in labour prior to giving birth, so are there certain end-of-life stages before someone eventually dies, says Warner. It’s the same idea as end-of-life doulas. “A soul midwife will recognise those stages and will work with them like a midwife would at birth.”

Soul midwives support a dying person to set out their wishes for the final days in a death plan. They listen, keep vigil, allow people to talk openly about their impending death and fears, and provide therapeutic support to help alleviate anxiety and pain. This can be through breathing techniques, massage, sound and music therapy and essential oils. As the “soul” in the title suggests, the role also offers a spiritual dimension linked to healing and detachment. But it’s not just about helping people to die without fear, loneliness or anxiety. It’s also about making people realise they are valued, says Warner. “I’m very keen on that because a lot of people we work with don’t have anyone in their lives. Making them feel that they are special is a very big part of our role and to honour them as the people that they have been, because you can be made to feel very anonymous when you’re dying, whether old or young”.

The daughter of the former Conservative MP David Mudd, Warner cites the “harrowing deaths” of her grandmother – with whom she had lived after her parents divorced when she was six, who died of lung cancer when Warner was 14 – and her stepfather two years later that forced “an enormous amount” of processing and reflection early on and led her to become a health journalist.

In the 1990s, Warner found herself writing a number of features about women dying of breast cancer. Interviewees revealed their loneliness and isolation and the sense of being locked in a room with an elephant in it. “The biggest thing was the feeling that they couldn’t talk to anybody honestly about the fact they knew they were going to die, because everybody kept saying ‘we’ll get you through this; you won’t die’.”

They talked and Warner listened. “I think there was a healing in that they could just talk frankly about how they really felt to somebody who wasn’t judgmental in any way.” But Warner saw her journalistic boundaries begin to slide as she stepped in to fill unmet needs, such as giving a massage after one of the women confided that “nobody touches me any more” because of her cancer. When the last of six women she had interviewed died, her decision to help dying people full-time was realised.

She began volunteering in her local hospice, where she noticed “big gaps” in care delivery: the “one-size-fits-all” approach, for example, that saw everyone “wrapped up with crocheted blankets” and “given plastic cups to suck out of”, regardless of their age or their personal needs.

“I sat there thinking it would be so useful if someone could join up the dots in what I was seeing with people who were dying. If there could be some kind of middle ground between the clinical care given and the sort of tender loving care that goes such a long way when you’re really feeling ill, because that seemed to be very lacking or offered very willy-nilly and not always to everybody.”

Warner began road-testing what would become her “gentle dying” approach – the basis of soul midwifery. “It was realising how little things can make such a difference to people at the end of life. Even just sitting and holding their hand is massive to someone who has got no one else sitting with them, and having time to do that is a big thing.”

Warner outlined her philosophy in a book in 2003, then began delivering training in Dorset, where she lives. So far, more than 1,000 individuals have paid to attend her courses, including Macmillan and Marie Curie nurses, doctors, chaplains, social workers and psychotherapists working in the NHS, as well as people from South Africa, Canada, the US and Australia. Around 40% of trainees have gone on to practice.

Warner runs a referral service from the Soul Midwives website. Many practitioners offer sliding scale charges, opt for a donation or charge nothing at all. “Nobody would ever be turned away if they could not pay,” says Warner. “It is not about the money. Nobody would be excluded on financial grounds.”

Soul midwives can now be found in care homes, hospices, hospitals and within the home throughout the UK. They liaise with GPs and district nurses if someone wants to die at home. Warner admits that it’s taken time to build trust with other care professionals, but adds, “this trust has grown as the value of our work is being understood and seen.”

For her, soul midwifery is a movement that can fill the gap once met through closer community networks and she views dying as a process rather than an event – something that she feels has been lost over the generations. Recently Warner has introduced the idea of soul midwife “residencies” so that end-of-life discussions leave the confines of hospitals and hospices. “We need to bring the care of dying people back into the community. It’s been so medicalised and taken out of most people’s normal environment, and that makes it very fearful [for people].”

She cites a recent example of a soul midwife pitching up at a library for a morning so that people could come and discuss various aspects of dying. She now hopes to persuade a coffee shop chain to host residencies.

What is clear is that ensuring a tranquil, gentle death for others is also good for Warner’s own soul. She says: “I feel it’s my reason for being here.”

Complete Article ↪HERE↩!

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Not all Americans have a fair path to a good death – racial disparities are real

By and

What does it mean to “die well”?

The world got an idea recently from the 92-year-old Buddhist monk and peace activist Thich Nhat Hanh, who popularized mindfulness and meditation in the U.S. The monk returned to his home in Vietnam to pass his remaining years. Many admired his desire to live his remaining time in peace and dignity.

Researchers from the University of California, San Diego recently did a literature search to understand what Americans might consider to be a “good death” or “successful dying.” As can be expected, their findings varied. People’s views were determined by their religious, social and cultural norms and influences. The researchers urged health care providers, caregivers and the lay community to have open dialogues about preferences for the dying process.

As scholars who study social health and human services psychology, we found something missing in these conversations – how race impacts life span.

It’s important to recognize that not everyone has an equal chance at “dying well.”

Black population and ill health

Take the disease burden of the African American population.

African Americans experience an earlier onset and greater risk of what may be referred to as lifestyle-related diseases, including cardiovascular disease, stroke and diabetes. More than 40% of African Americans over the age of 20 are diagnosed with high blood pressure, compared to 32% of all Americans.

In addition, the Centers for Disease Control and Prevention reports that the likelihood of experiencing a first stroke is nearly twice as high for African Americans compared with whites. African Americans are more than two times more likely to experience a stroke before the age of 55. At age 45, the mortality rate from stroke is three times higher for blacks compared to whites.

This disease burden consequently leads to their higher mortality rates and overall shorter life expectancy for blacks compared to whites.

And while the life expectancy gap differs by only a few years, 75.3 for blacks and 78.9 for whites as of 2016, research suggests that African Americans suffer more sickness. This is due in part to the increased prevalence of high blood pressure, obesity and diabetes in this population.

Genetics, biological factors and lifestyle behaviors, such as diet and smoking, help explain a portion of these differences. However, researchers are still learning how race-related social experiences and physical environments affect health, illness and mortality.

Access to health care

factor is that African Americans have historically underutilized preventive medicine and health care services. They also delay seeking routine, necessary health care – or may not follow medical advice.

One study found that during an average month, 35% fewer blacks visited a physician’s office, and 27% fewer visited an outpatient clinic compared with whites.

“The only time I go to the doctor is when something is really hurting. But otherwise, I don’t even know my doctor’s name,” said a young African American male during a research study in Chicago, Illinois.

There are reasons for this mistrust. Researchers who study medical mistrust argue that high-profile cases of medical experiments are still playing a role in how African Americans view health care systems and providers. In the past, physicians have intentionally done harm against people of color. A well-known case is the Tuskegee Study of Untreated Syphilis in African American men, which lasted from 1932 to 1972.

In this clinical study, 399 African American men, who had already contracted syphilis, were told that they were receiving free health care from the government. In fact, doctors, knowing their critical condition, were awaiting their deaths to subsequently conduct autopsies and study the disease’s progression.

Even though penicillin had been proven to treat syphilis by 1947, these men were denied the treatment.

Why discrimination matters for health

Other studies suggest that regardless of their knowledge of past medical abuse, many African Americans have low levels of trust in medical establishments.

“Doctors, like all other people, are subject to prejudice and discrimination,” writes Damon Tweedy, author of “Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine.” “While bias can be a problem in any profession, in medicine, the stakes are much higher.”

Unfortunately, these fears are underscored by empirical evidence that African Americans are less likely to receive pain medication management, higher-quality care or survive surgical procedures.

In addition, a growing body of literature has established that experiences of discrimination are extremely harmful for physical and mental health, particularly among African Americans.

This research adds to the body of evidence that experiences of discrimination harm people’s health and may contribute to the increased rates of premature decline and death among blacks.

What does it take to die well?

As African American scholars, we argue the “art of dying well” may be a distant and romantic notion for the African American community.

African Americans are also exposed to earlier and more frequent deaths of close loved ones, immediate family members and friends.

Their increased “vulnerability to untimely deaths,” writes Duke University scholar Karla Holloway, shows African Americans’ lack of access to equitable and fair paths in life.

Before defining “a good death,” American society must first begin to fundamentally address how to promote quality living and longevity across all racial groups.

Complete Article ↪HERE↩!

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When the future is running out, narrating the past helps to prepare

By Dhruv Khullar

How should you live when you know you’re going to die?

It is perhaps the ultimate, eternal question — one we all have to grapple with, but mercifully, don’t have to, until the end is crystallized by our own illness or that of a loved one. Humans may be the only animal capable of grasping mortality, but it’s usually not something on our minds — until it is.

It’s a question I confront frequently as a physician caring for seriously ill patients. One morning some months ago, I met an older man with an aggressive cancer that had turned an avid runner into a voracious reader. He glanced up from his newspaper as I entered the hospital room.

“It’s [a] strange feeling, you know, reading about a world you’ll never get to see.”

After several rounds of chemotherapy — each more toxic than the last — he decided he had had enough. He could go long stretches without contemplating death, he said, until the sight of a far-off date or curiosity about some newly proposed legislation would bring into sharp focus the unavoidable reality: His days were limited.

“I mostly read biographies now,” he told me. “Reading about other lives helps me make sense of my own.”

I began to wonder whether the secret to a good death wasn’t looking forward, but peering backward — whether retrospective examination might be more therapeutic than prospective preparation. I thought of how often I’d focused solely on helping patients navigate the future: how many weeks or months of life they might expect, which procedures they should or shouldn’t consider. These discussions, while important, fail to address what research has revealed about the deeper wants and needs of seriously ill patients.

Nearly 20 years ago, a seminal study in the Journal of the American Medical Association explored what patients and doctors feel is most important at the end of life. Many responses were predictable and consistent across groups. Both doctors and patients, for example, thought it was important to maintain dignity, control pain and other symptoms, and have one’s financial affairs in order.

But where physicians and patients diverged is telling — and suggests both a missed opportunity and a path to progress.

Patients were far more likely to express that it was important to feel that their life was complete, to be at peace with God and to help others in some way.

In other words, to feel that their lives mattered.

A growing body of work suggests that a powerful but underused method of creating this sense of mattering is storytelling — reflecting on the past and creating a narrative of one’s life, what it has meant, who you’ve become and why.

Humans are natural story­tellers. We have tremendous power to frame a narrative. The same series of events — becoming a parent, getting a divorce, losing a loved one, finding a job — can be a tale of resilience and restoration or misfortune and regret. The process of bringing coherence to one’s life story is what psychologist Dan McAdams calls creating a “narrative identity.” People get better at identifying important life themes as they age, and those who are able to find the positive amid the negative are generally more satisfied with life.

Physicians are also storytellers by profession. But we’ve traditionally focused on narrating the course of disease instead of helping patients make sense of their lives with it. Creating opportunities for patients to reflect on life experiences, however, could offer an important avenue for healing — whether at the end of life or somewhere in the middle.

In a 2018 study, researchers assigned veterans with post-traumatic stress disorder to engage in either five 30-minute writing sessions in which they reflected on traumatic experiences, or a rigorous 12-week program of cognitive processing therapy (CPT), a first-line treatment for PTSD. The study found that the short writing sessions were just as effective at reducing PTSD symptoms as the resource-intensive CPT program.

Other work suggests that the particulars of storytelling matter. Simply looking back and listing life events doesn’t seem to help. It is the constructing of a narrative — exploring linkages, formulating a plotline — that’s critical for arriving at a coherent sense of self.

And even the pronouns seem to matter.

Using the first-, second- or third-person when reflecting on past experiences can each have strategic advantages. Using the third-person, for example, seems to allow us to better appreciate how we’ve changed over time, while the first-person primes us to look for continuity. Reflecting on challenges by using the generic “you” — “you win some, you lose some” or “what can you do?” — can help create psychological distance from a tough situation and universalize the experience. “I” makes the focus your response; “you” tethers it to the human condition.

When the future is running out, can we make more of the past? I often struggle with my role as a caregiver for patients at the end of life. I know the most healing things I can offer aren’t the things I usually do: pain medications, laxatives, intravenous fluids. Rather, they are at once more challenging and more elementary. To sit. To listen. To explore what it’s all meant.

“I tell myself,” my patient said. “Even if I won’t be around to see it, I helped shape the world of the future. At least my little part of it.”

Complete Article ↪HERE↩!

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Living Well…

Embracing the natural stages of the dying process through hospice care

By Lauren Glendenning

When patients need hospice care, family members and other loved ones often feel overwhelmed with emotion. A caring and supportive hospice team can help alleviate some of these feelings.

We asked Kristine Cooper, executive director of Home Health and Hospice at Memorial Regional Health, to help readers understand more about hospice care at MRH and how it affects patients’ families.

What are some ways that hospice care can relieve stress for those who may be in charge of an elderly loved one?

Kristine Cooper: Hospice really provides support not only to the patient but also to the caregivers. We have nurses that spend time with caregivers, educating them about the disease and dying process. We also have our LCSW (Licensed Clinical Social Worker) who spends time with the patient and caregivers, discussing end-of-life planning. She also works with caregivers and families to address anticipatory grief.

Are there any myths about hospice care you’d like to clarify?

 

One myth would be that hospice hastens death. Hospice really embraces the natural stages of the dying process and neither intends to hasten or prolong death. Our team partners with the patient and family on the journey. Another myth is that hospice is expensive. Medicare actually covers the cost of hospice, including medications to treat symptoms related to the patient’s terminal diagnosis as well equipment needed to care for the patient safely in their home.

Why is it important for families to know about hospice care?

Hospice is not about giving up hope, it’s about refocusing hope. With hospice, there is hope that pain and other symptoms can be managed so that loved ones can live their best life in their final days. Hospice also offers hope to families and caregivers by providing support during this difficult time.

When is hospice care is necessary?

Hospice is here for patients who have been diagnosed with a life limiting or terminal illness with a life expectancy of 6 months or less to live.

What kind of care do hospice patients receive?

Hospice provides nursing, emotional and spiritual support. Hospice can also provide support from physical, occupational and speech therapy with the focus of helping patients move safely. We also have volunteers that can provide companionship and assist with light housekeeping and cooking. All these different services make up the patient’s care team that works closely with their doctor. The overarching theme about hospice is that it is really about what the patient or family needs.

Complete Article ↪HERE↩!

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This is what it’s like to be a death doula

The founder of Going With Grace, Alua Arthur, shares how she found her way into death work and how she manages not to take her work home with her.

Alua Arthur

By Anisa Purbasari Horton

For many people, the thought of being surrounded by death (and have that be a central part of how they earn their living) can seem quite morbid. But for Alua Arthur, the founder of the end-of-life planning service Going With Grace, it feels exactly the opposite.

Arthur is a death doula—also often referred to as a “death midwife.” Arthur’s journey to becoming a death doula is a profoundly personal one, but she represents a number of professionals who are active in the growing “death wellness” and “death-positive” movement. As Fast Company‘s Rina Raphael previously reported, this movement rests on the notion that having a good death is “part of a good life.”

Fast Company recently spoke to Arthur about her motivations for becoming a death doula and how she copes with work-life balance as she helps others through the grieving (and often stressful) administrative process that comes before and after a loved one’s death. The interview has been edited for length and clarity.

Helping people become clear on what death looks like

A death doula is a non-medical professional who provides holistic support for the dying person of the family and the family members. I help the people who are close to death on what it looks like. After that, I help family members deal with their affairs.

I also work with healthy people. The way I conceive it, as soon as someone comes into any recognition that one day they’re going to die, that’s the time to start preparing for that, so I help them with an end-of-life plan. It’s where we write down all the stuff that’s going to be a pain. We get clear for what their desires are for life support, and who’s going to make the decisions for them. We walk through important information and documents, like where’s their birth certificate? Where is their retirement account? Where do they bank? 

I also help people who are terrified of death. I find that people are more afraid of the dying process than death itself, so with them, I do death meditations. This looks like us going through the eventual decline of the body, their systems shutting down, and their breathing becoming ragged. It’s an opportunity for the person to lay there with whatever it is they experienced. A lot of times, people experience a sense of peace after going through this process.

The desire to build a career around death

Growing up, I wanted to be lots of things. I really wanted to be an astronaut. I loved to read and immerse myself in another world. I also wanted to be a conductor. I applied to a music conservatory, but I ended up in a liberal arts school that had an okay music program. I got involved in student government and decided to go to law school. I worked in property law, starting with government benefits, and then I moved to domestic violence and then not-for-profit development. I fumbled around for 10 years and started getting really depressed, so I took a medical leave of absence. That’s how I found death work.

I met a woman in Cuba. She had cancer and was traveling, and we bonded. We spent 14 hours on the bus together, and I asked all the difficult questions. What would be undone in her life if the disease killed her? What does she think happens after she dies? Did she live with the recognition of death constantly? They were questions I never really had myself. That was the first time it hit me that death was very real and that we don’t talk about it enough. It became clear that I wanted to spend my career talking about death.

That was solidified when my brother-in-law got sick and died. It showed me how all the ways that we do it now are broken. We had so many questions—how do we transfer the title for his vehicle, and what should we do with his leftover medication? There was nobody to answer them.

A day in the life of a death doula

A typical day always includes a lot of emails. So many emails. The part of my job that stresses me out is the business part. God, it’s the worst! I need to go back to my vision of helping people feel less alone to keep me in clear focus.

I start my day checking on various things—with the people who are dying, how things were over the course of the night. I’ll also check on plans for any funeral procession. I do a lot of phone calls and talk to therapists who work with people that are dying. If I do have clients that are dying, I see them in the afternoon, or I will see my end-of-life planning clients.

These days, I also do a lot of education around death and dying. I’m doing a lot of talks to reach people about how to do this work because we’re all going to have to do it for somebody in our lives.

When it comes to work-life balance, I do things like meditate daily, exercise regularly, and drink a gallon of water every day. I just got my nails done. I don’t deny myself pretty things.

On death and relationships

I talk about death all the time with my friends and family. I think sometimes I can be a little bit annoying because I want people to be authentic in their decision-making. I tend not to tell people what to say or do, and I listen actively. My best friend and I, we always have challenges because she always wants to tell me what to do. It is a struggle for my friends who have a hard time with the concept of their own mortality, because I’m talking about it all the time.

I don’t push the issue with my friends who are uncomfortable, but with my family members, I do. For my dad, he first had to come around to the idea that I wasn’t going to be practicing law anymore. Being an African parent, he wanted me to be either a lawyer, doctor, or engineer. I was like, how about death? He was like, how about what? That was a little tricky. But eventually, we got around to talking about it. After all, I’m the one who’ll have to deal with it when it happens.

I think people actually want to talk about death, but they feel like they don’t have permission to do so because it’s “heavy.” Well, it’s a regular part of living. Without death we wouldn’t have life. It’s funny: when I meet someone for the first time and I tell them I’m a death doula, so many of them say, “Oh, when x died, I wish that you had been there.”

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