Category: Preparing for Death

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The death question

— How to talk to clients about their life expectancy

It may be a grim topic, but death is a key factor in retirement planning.

By Nathan Place

How long do you expect to live? It’s a touchy question, but research shows asking it can significantly help investors prepare for retirement.

Death is rarely a pleasant topic of conversation, but it’s a key factor in retirement planning since the longer you live, the more savings you’ll need to finance your life. But because it’s uncomfortable, many savers avoid realistically estimating their own lifespans — which can lead to poor planning.

“People tend to underestimate how long they will live in retirement, which means they tend to save too little, spend too much and run out of money in later life,” said Olivia Mitchell, executive director of the Pension Research Council at the University of Pennsylvania.

The good news is that, according to new research, even the most cursory conversation on the subject can make a big difference. Mitchell recently co-authored a study by the Leibniz Institute for Financial Research at Goethe University Frankfurt, which surveyed people’s estimates of their own life expectancies. In some cases, the test subjects also read a paragraph about a hypothetical retirement saver (“Mr. Smith”) and answered a multiple-choice question about what he should do.

But the study wasn’t interested in how well the respondents guided Mr. Smith. Instead, it focused on how accurately they estimated their own life expectancies after answering the questions. The researchers measured the gap between people’s subjective and actual life expectancies — in other words, how long they thought they would live versus how long they would probably live in reality, based on their gender, age and other demographics. In general, the average gap was 17.1%. But after reading the Mr. Smith paragraph, that gap shrank by 5.2 percentage points.

“In other words, simply prompting people to think about a financial decision related to longevity risk affected peoples’ estimates of their own anticipated lifespans,” the study said.

For financial advisors, what this means is that even just broaching the subject of a client’s lifespan can substantially help them think more clearly about the future. In some cases, that can mean better preparing for longevity risk — the danger that a person will outlive their retirement savings.

“When financial advisors are doing their jobs well, they will help people understand not only the too-simple concept of life expectancy, but also the notion that half the people live longer than this mean,” Mitchell said. “Therefore, plans are needed to cover the eventuality of living to 100 or beyond, which is what longevity risk refers to.”

Of course, this is easier said than done. How does one remind a client of their own mortality and then have a calm, unemotional conversation about finances? Advisors have a wide range of methods. When possible, some said, it helps to make it funny.

“I find it’s best to be compassionate, direct, and (for the right clients) inject a little humor,” said Louis Leyes, a financial planner and partner at Stages Planning Group in Pennsylvania. For some investors, he puts the question this way: “So, when would you like to take your leave of this mortal coil?”

Lora Hoff, a CFP at IPI Wealth Management in Illinois, said she likes to “keep it light.”

“I say something like, ‘My plan will need to include some assumptions about how long you will live,'” Hoff said. “‘I can use the actuarial default, or I typically use age 100, unless you have some specific preference of what you want to see — I don’t like to kill anybody off in my planning!’ Then I just laugh about it.”

Others use technology, including software like eMoney or MoneyGuidePro, to estimate the client’s lifespan. That way the question stays mathematical instead of emotional.

“We use MoneyGuidePro’s questions about whether they smoke, how healthy they are and the longevity in their family and let the program decide on their lifespan,” said Lisa Kirchenbauer, a CFP and founder of Omega Wealth Management in Virginia. “Then we discuss and change it to fit what the client is comfortable with, explaining the pros and cons of the choice.”

Some advisors say that by treating death as a purely practical matter, they can keep the conversation from getting uncomfortable.

“I actually don’t find it difficult to talk to clients about mortality,” said Anna Sergunina, a CFP and president of Main Street Financial Planning in California. “I explain to them that we need to have an ending point to their financial plan, to make sure we’ve estimated properly how long their money will last.”

Leibel Sternbach, a financial advisor and the chief technology officer of Fusion Capital Management in Texas, said most clients aren’t shocked by the death discussion.

“Our job is to ask the hard questions,” he said. “They know and expect it of us.”

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How To Support A Loved One Suffering From A Life-Threatening Illness


By Amanda Chatel

Watching someone you love suffer through an illness that could possibly lead to the end of their life is one of the most difficult things anyone can encounter. It doesn’t matter if your loved one lived well into their 90s or they’re still in the prime of their life — it’s a tragic loss for everyone involved. That’s especially true for the one who’s been diagnosed.

“You can be the most intelligent, organized person in the world, but hearing distressing news about your condition makes it hard to keep things straight,” associate medical director for Capital Caring Farrah Daly, M.D. tells WebMD.

Because of this, trying to navigate how to support a loved one in such a position can feel daunting. You want to be there for them, but you also want to give them their dignity and space when they need it. You want to be helpful, but also not treat them as though they’re incapable of things that they can still manage — and even want to manage — to do. It’s all about finding the right balance as to how to support them in a way that makes their mental and physical health as stress-free as possible during this difficult time.

Be honest with each other

There’s no sense in tiptoeing around the truth. If your loved one has a life-threatening illness, then it simply can’t be ignored. If there are children who will be affected by the illness, the truth shouldn’t be kept from them either. We live in a culture that still treats death as a taboo subject, which makes talking about it even more difficult. But it shouldn’t have to be that way.

“Death is an inevitable part of all our lives, and yet in modern society we have become far more distanced from the first-hand reality of it,” chief executive of Sue Ryder, a bereavement support center, Heidi Travis tells BBC. “It’s really time to open up a national conversation on death and dying with greater education and dialogue.”

While the illness shouldn’t be the only thing that’s discussed during this time, having conversations about it (instead of fearing the talks) will help everyone. It may not lead to acceptance of the illness — but it will help eliminate the stigma surrounding sickness and death.

Allow your loved one to feel their feelings

Until you’ve been diagnosed with a life-threatening illness, you’ll never truly know what that type of information does to a person. With this in mind, it’s important to allow your loved one to feel their feelings — all of them. If they’re feeling rage, anger, sadness, fear, guilt, cheated, or any other emotion, the best way to support them is to let them feel it all and actively listen to everything they’re saying. It’s important to realize that there’s no right or wrong way to grieve. Being given such news can bring out parts of your loved one that you may have never seen before.

“Let them feel what they want to feel by ensuring they are comfortable around you,” CEO of Grief Coach Emma Payne tells TZR. “But remember, everyone mourns differently, so be there for them whichever way they choose to cope (unless it’s dangerously unhealthy) … simply listen and sit with them as they grieve.”

If your loved one is dying, you can’t change that or take it away. But you can give them all the space they need to mourn their impending passing. Talk about everything they need to say before it’s too late.

Ask your loved one who they want to notify

Because of the taboo surrounding death and life-threatening illnesses, make sure you get the okay from your loved about who they would like to know about their sickness — and whom they’d prefer to keep in the dark. Not everyone is comfortable sharing such news, just like not everyone is comfortable receiving such news.

“Some people want to tell their story over and over again to each person — it helps them process their feelings,” associate medical director for Capital Caring, Farrah Daly, M.D., tells WebMD. “Others don’t want to relive the experience and would rather someone explain things for them. There’s no one right way.”

Even if you disagree with your loved one about certain people knowing that they’re sick, this is not your journey. While anyone who knows and loves someone with a life-threatening illness is involved, ultimately, this isn’t about you; it’s about the person who has the illness. Do right by them and only tell those whom they want to know about it.

Come up with a schedule

Depending on how far the illness is, there may be a need for a schedule for family members to stick to make sure your loved one is as comfortable as possible. For example, on Tuesdays and Thursdays, someone might be in charge of taking your loved one to doctor’s appointments. On Sundays, someone can bring over food for a few days so the person who is ill doesn’t have to think about preparing meals.

“Don’t wait for them to ask,” Dr. Varun Choudhary tells Bustle. “Instead, offer to help by bringing over dinner, shopping, gardening, etc.”

When people are very sick, they sometimes forget to take care of themselves because their mind is someplace else. Creating a schedule that everyone agrees works for them to make sure your loved one has food, takes their medication when they’re supposed to, and never misses a doctor’s appointment, creates an entire network of support so no one feels alone during this heartbreaking time.

Help them achieve any final wishes

If it looks as though your loved one is coming to the end of their life, then it’s time to have the very difficult talk about end-of-life wishes. In addition to helping them get their affairs in order so they don’t have to worry about how their last will and testament will be received by beneficiaries, you also want to talk to them about things they didn’t do, but might still want to. They’ve never seen the Pacific Ocean? Then it looks like it’s time for a road trip. They’ve always wanted to see the Red Sox play against the New York Yankees? Well, buy some tickets and get ready to heckle the opposing team’s fans (and enjoy boxes and boxes of extra salty popcorn).

Of course, not all wishes can be granted. But those that can fulfilled? Do your best to honor them for your loved one’s sake.

Allow yourself to grieve

Although you should try to avoid grieving in front of your sick loved one, it’s only natural to grieve what you’re going to lose — and grieve what your loved one is losing too. Grief is complicated. While your grief is going to look very different from the grief of your sick loved one (because you’re grieving different things), you shouldn’t try to suppress your feelings. People can’t be fully present and supportive if they’re hiding from their own feelings.

“Many people say they are feeling a heavy sadness — and what they’re describing is grief,” thanatologist David Kessler tells The Guardian. “We’re grieving the world we have lost: normal life, our routines, seeing our friends, going to work. Everything has changed. And change is actually grief — grief is a change we didn’t want.”

There will be okay days, and there will be bad days, but rarely good days as you support your loved one through this. You can’t undo reality. But as long as you stand by them and give them all the love and support you can, then you will have done right by them — and you won’t regret what you should have done differently down the road.

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Before your real funeral, you should attend a “living funeral”

— At this event, you’ll be around to hear the eulogy.

by Alexandra Keeler

  • A “living funeral” — also known as a “living wake” — is a ceremony held for a person who is still alive.
  • The living funeral has cultural roots in Japan as well as in long-held indigenous North American traditions.
  • While living funerals can ease fear and anxiety about death, traditional post-mortem funerals retain an important role in the grieving process.

“What a waste. All those people saying all those wonderful things, and Irv never got to hear any of it.”
— Mitch Albom, Tuesdays with Morrie

Death is inevitable. It is out of our control. But how we die is within our control. One way to reclaim some measure of control over death is by way of a “living funeral,” also known as a “living wake” — a ceremony held for a person who is still alive, often to celebrate their life and legacy while they are able to participate. Unlike a traditional funeral, it is a way for the person to say goodbye to loved ones and to be able to smell the flowers at their own funeral.

These events are often planned with the help of a “death doula,” who can provide guidance and support in creating a meaningful ceremony that reflects the individual’s wishes, values, and beliefs. The word “doula” is derived from the Greek term doulē, which means “female servant.”

A death doula is a trained guide who can provide  a holistic, community-based and personalized end-of-life experience. They work alongside medical and palliative care professionals rather than replacing them. Their training can include knowledge of the biological, psychological, social, spiritual, legal, and ethical aspects of end-of-life care. Overall, death doulas can help to alleviate the collective fear of death and promote greater peace and understanding in the face of this universal experience.

Where did living funerals come from?

The specific origins of living funerals are difficult to trace, as rituals like these have developed independently in different cultures over time.

The Lakota Sioux have a tradition of the living funeral in which they repair relationships or make amends, distribute family heirlooms, and eat traditional foods as a way of purifying and preparing for death. Near the time of death, family, friends, and neighbors gather to say farewell.

A living funeral is for the dying, while traditional funerals are for the survivors.

Anishinaabe people in the Great Lakes region of Canada and America also honor their dying loved ones with end-of-life ceremonies. A pipe ritual is commonly conducted by a spiritual leader to guide the person’s spirit to the spirit world. The sacred pipe is a revered tool for communication with the Creator, and during the ceremony, tobacco is smoked to express gratitude for life and creation. The dying person makes amends with the Creator while family members pray for their safe passage. Sacred medicines are burned, offerings of food and cloth are made, and loved ones sing sacred songs to ease the pain of the dying until their spirit leaves their body.

The Japanese have a non-traditional practice called seizensō, which means “funeral while alive.” According to cultural anthropologist Satsuki Kawano, this gives the elderly a novel sense of independence, countering negative perceptions of aging and the elderly. Due to various societal and economic factors, Japan’s traditional respect for elders is eroding and ageism has become a problem. Seizensō challenges the notion that the elderly are passive or burdensome members of society and emphasizes the importance of shaping their own lives and legacies.

What does a living funeral actually consist of?

Planning a living funeral is very personal and customizable, and the specifics can vary. The ceremony can be held in various locations, including a person’s home, an outdoor spot, a favorite restaurant, or any place of significance. Guests can bring mementos that trigger memories and stories, informal speeches can be made, and a designated friend or officiant typically orchestrates the activities. The sequence of events can include any variety of activities that reflect the individual’s personality and interests, but food, videography, music, art, and visiting the final resting place are some common choices.

One of the most important aspects of the living funeral is making the dying person feel comfortable and cared for. BJ Miller, a palliative care physician at the University of California-San Francisco Cancer Center, said in a 2015 TED talk, “So much of it comes down to loving our time by way of the senses — by way of the body; the very thing doing the living and the dying.” He urges people involved in end-of-life care to consider the bodily senses of the person who is dying. He recommends creating a pleasant and comforting experience for them that takes all of their senses into account and honors their dignity. He describes one elderly woman’s request to feel her dog pressing its nose against her skin.

Death doula Alua Arthur emphasizes creating an ideal deathbed as part of the living funeral ceremony. She advises making it comfortable, aesthetically pleasing, and sensually enriching by including favorite scents (incense), colors (pillows, art, flowers), and sounds (singing bowls, music).

If a ceremony is intended to help the person nearing the end of their life overcome anxiety about death, one of the events might include a guided meditation that walks the dying person through a visualization of their own death. Visualization techniques can be used to induce a sense of calm and connection to the natural world, and can help one to confront and come to terms with one’s own mortality. One such visualization guided by death doula Brooke Manning involves imagining oneself in a peaceful natural setting and then visualizing a metaphorical representation of life as a light within the body. This light is then imagined to sink down into the earth, joining up with lights that represent other people’s life sources, creating a sense of connection to the universe and fostering a deep understanding of one’s place in the world.

Informed consent should be at the center of a living funeral ceremony. It is important to ensure that the person for whom the living funeral is being planned has autonomy. A living funeral can also be an emotional experience for everyone involved, so it is important to ensure that the person and their loved ones are emotionally prepared for the experience.

Any decisions made should also be respectful of the person’s cultural, religious, and personal beliefs. To ensure that the ceremony appropriately reflects this, it is important to involve doulas who have the necessary cultural and spiritual knowledge, so it’s often helpful to select someone who approaches this work through a polytheistic lens.

One of the main decisions when planning a living funeral involves the timing of the ceremony. While it is a personal choice, and there is no specific requirement, most people choose to have a living funeral when they receive a terminal diagnosis or when they feel that their death may be approaching. However, others may choose to have it earlier to proactively participate in the event, enjoy the celebration of their life, and have meaningful conversations with their loved ones while they are still able to do so.

Living funerals can’t replace the real thing

Unlike in a traditional funeral, a living funeral allows the central figure to speak, hear others speak, take part in rituals and rites of commemoration, all while in the presence of supporters as witnesses. It is a collaborative and personalized ceremony that empowers the person of focus with agency during a time when their control is slipping away.

Psychologist Dr. Nick Capaul, who specializes in grief and loss, explains that an appropriate way to think about the difference between the two types of funeral, is that a living funeral is for the dying, while traditional funerals are for the survivors. Although both are beneficial, the latter is often still required for the bereaved to gain closure. In his experience, when families opt for a living funeral instead of a traditional post-mortem funeral, other family members or friends of the bereaved push back. They almost always want a traditional funeral. When people are robbed of their opportunity to confront and process death, people can experience what is called “disenfranchised grief.” In reference to grief, disenfranchisement means depriving someone of their right to grieve. Dr. Capaul believes that a living funeral does not include the element of loss, and if there is no loss, you are not truly confronting grief or processing death.

Dying individuals are often isolated due to illness or conditions that limit their communication and mobility, while friends and family may also avoid interactions due to discomfort and cultural taboos around death. A living funeral can provide one last party, similar to an Irish wake. In general, while being around a person nearing the end of their life can be emotionally challenging, creating more opportunities to spend time with them can be beneficial for everyone involved.

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How Does Hospice Care Work?

— Hospice offers crucial end-of-life care with a focus on the patient’s comfort and dignity. Experts explain who is eligible, what it entails and how to understand and navigate the process.

By Dana G. Smith

In February, the Carter Center announced that former President Jimmy Carter had decided to stop receiving medical interventions and had transitioned into hospice care at home. The cause of Mr. Carter’s decline was not revealed, but the 39th president, who is 98, has been public about health issues he has faced in recent years, including melanoma — a skin cancer that spread to his brain and his liver — and numerous falls.

Hospice provides end-of-life palliative care with a focus on the patient’s comfort and dignity. Pain relief is a priority, while treatments intended to prolong life are discontinued. Hospice agencies offer access to physicians, nurses, health aides, social workers and chaplains who assist patients and their families with everything from symptom management to funeral arrangements. The care is typically provided where the patient lives, whether that’s at a private home or in an assisted living facility.

“When people are close to the end of their lives, going to the hospital does not make them feel better anymore, because there’s not necessarily something that we can do to address their underlying illness,” said Dr. Carly Zapata, an assistant professor of medicine at the University of California, San Francisco, who specializes in palliative care. Hospice “is really focused on caring for people — and their caregivers or loved ones — to help them have the best quality of life possible for the time that they have left.”

Here’s what hospice care entails and how to decide if and when it’s right for you or your loved one.

Who is eligible for hospice care

To receive hospice care, a person must have a terminal diagnosis with a prognosis of six months or less to live. In most cases, a physician recommends hospice; patients and their families can also take the initiative and contact hospice agencies, although a doctor must attest that a person meets the qualifications.

“It’s a hard conversation to have,” said Dr. David Casarett, a professor of medicine and section chief of palliative care at the Duke University School of Medicine. “Enrolling in hospice means that you have to confront that person looking back at you in the mirror and realize that you’re going to die.”

Most people receive hospice care for less than one month. In the rare instance that a person lives longer than six months while in hospice, a physician will re-evaluate the person’s health to assess whether the patient still qualifies.

Many people would benefit from enrolling sooner so that they can receive hospice services for months instead of weeks, Dr. Casarett said. But, he acknowledged, “that doesn’t work for everybody — many people really want to continue aggressive treatment up until the very end.”

Hospice is provided regionally, so the first step is to search for agencies that serve your county. Nursing homes and assisted living facilities usually have contracts with one or two local hospice agencies.

Medicare covers the cost of hospice care. (In most cases, the people who require hospice are on Medicare because they are over 65 or have a qualifying disability.) Medicaid and private insurance also typically cover the service, although just like any other health care cost, your insurance may require that you use a specific provider. For people who are uninsured, some hospice agencies operate as nonprofit organizations or provide services free of charge.

If several options are available, “I really strongly recommend that folks talk to more than one hospice” to find an agency that best matches their needs, said Katie Wehri, director of home care and hospice regulatory affairs at the National Association for Home Care and Hospice.

“There are requirements from Medicare that all hospices have to abide by,” Ms. Wehri said. “But then hospices can also choose to deliver additional services, and how they deliver those services is really up to them.”

Ms. Wehri’s organization provides a list of questions for families to ask when talking to potential hospice providers, such as: “What kind of out-of-pocket expenses should be expected for hospice-covered services?”; “How often will a hospice team member visit, and how long will most visits last?”; and “What happens if I need to go to the hospital or the emergency room?”

Dr. Zapata also advised asking about how medical care will change when the patient enters hospice, such as which treatments and medications will be stopped and who will oversee care. Hospice agencies employ their own physicians, but if you have a strong relationship with a primary care provider or a specialist you’ve been seeing, you can request to have that physician continue to supervise care.

“Sometimes people enroll in hospice expecting everything to be the same,” Dr. Zapata said, and when that isn’t the case, it can be “an unwelcome surprise.”

What hospice care entails

Hospice care is most intensive at the beginning, when a person starts the transition, and at the end, as the person is closer to dying. Hospice agencies provide a range of services, support and supplies to help during the end-of-life stage, including medication management, such as for pain, nausea and depression; equipment like hospital beds, wheelchairs or oxygen; help with navigating legal documents and medical bills; and bereavement services for family members.

Nurses are the hospice providers who visit most often. Appointments may be scheduled every day, but more typically they occur one or two times a week. The nurse will check vital signs, ask about symptoms and consult with the supervising doctor about the need for any changes in medication. The nurse also educates caregivers about how to administer medicines or how to assist with a patient’s personal care, like bathing.

Hospice teams provide crucial emotional and logistical support, as well. Social workers might assist in setting up a will, power of attorney or funeral arrangements. Spiritual care providers — religious or nondenominational — can help a person come to terms with the end of life through prayer or facilitating conversations with loved ones.

For all the benefits and services offered through hospice, though, it does not provide round-the-clock, in-person assistance. If a person is undergoing hospice at home, “It is the patient’s family or friends who are often providing care to them,” Ms. Wehri said. (In assisted living facilities, staff members will administer care.)

Because of this reality, “hospice almost never provides the level of support that families expect,” Dr. Casarett said. “That’s nothing against hospice; it’s just when you’re trying to take care of somebody who’s dying at home, you need all the help you can get.”

If someone’s needs are beyond what can be managed at home, many hospice agencies have inpatient facilities, or they work with a hospital or a nursing home. But those inpatient stays are intended to be used for temporary, acute concerns, such as if medication needs to be administered intravenously, and insurance will often cover them for no longer than a week.

For people who live alone, or if receiving care from family is not an option, it may be necessary to hire a home caregiver or to move to a nursing home. Unfortunately, these options can be expensive and are not typically covered by insurance. Experts say this is the biggest challenge when it comes to hospice care.

When a loved one is being cared for at home, a “beautiful part” of hospice is that, logistically, it doesn’t really require any preparation, Dr. Zapata said. The people who deliver the medical supplies will rearrange your furniture to fit a hospital bed. The social worker will help make sure advance directives are taken care of.

Instead, she said, the preparation that’s needed “is the acknowledgment that someone is getting close to the end of their lives” and deciding how to make the most of that time.

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As a Doctor, I Know Being Ready to Die Is an Illusion

By Sunita Puri

Nine years ago, near the end of my residency training, I sat opposite a patient, wondering whether he’d accepted that he was dying. He was in his 60s, an artist with sinewy arms and serene eyes, someone I’d come to know well over the past three years. Cancer had broken into his liver and bone marrow, robbing him of hunger and energy.

Each time I saw him, the hollows of his cheeks deepened. I wanted to tell him that he was dying, that I wanted to understand how he envisioned spending his remaining life. But he mostly spoke about his plans: a camping vacation in six months, a friend’s wedding after that.

I awaited some sort of arbitrary signal that it was safe to talk about dying. Maybe he’d tell me that he didn’t want more chemotherapy or that his affairs were in order. Like many physicians, I feared that by talking about death before he appeared ready, I might take away his hope, make him give up or send him into an unstoppable tailspin of anxiety and depression.

Whether he hadn’t accepted his fate or simply wished to avoid the subject, he didn’t appear to be ready to talk about his death. How could I reconcile what appeared to be our radically different interpretations of his condition? By waiting for him to act in ways that I understood as acceptance, I thought that I was being compassionate and sensitive.

“I don’t think he understands how sick he is,” I told my supervisor. “He’s not there yet.”

In the years since, I have learned that trying to find immutable evidence of someone’s readiness to die is like trying to wrap your arms around a ghost.

Reconsidering what we think acceptance means — and whether it will come to pass — requires loosening our expectations of those who are dying. To become better at talking to one another honestly about death and to truly prepare for it, we must first understand why we expect the dying to demonstrate readiness in the first place.

During residency, my compatriots and I relied on Elisabeth Kübler-Ross’s stages of dying. We were quick to diagnose denial and wait for acceptance. We assumed certain decisions that we wanted people to make reflected readiness — a patient with heart failure who agreed to a do-not-resuscitate order, another with emphysema who enrolled in hospice.

But if patients dying of cancer insisted on life support, we figured that they probably weren’t there yet. When people sobbed or screamed during conversations about their illness worsening, we told ourselves they simply weren’t ready. We didn’t want to stumble through the thicket with them; we wanted to meet them at the clearing.

My patients’ families often searched for similar clues, their pain amplified if their loved one didn’t appear to have come to terms with death or wasn’t ready to let go. Such searching, while well intentioned, betrays fears about suffering — the patients’ and our own. If the dying reassure us that they are ready to die, perhaps we may live with a softer grief. If they show us that they are ready to go, we can be readier to let them go.

The stark separation between those who are dying and those who are not is complicated inside a hospital. Family members and medical teams experience and respond to dying people’s suffering in distinct ways. Yet doctors and families alike can shackle those who are dying with gauzy expectations: Perhaps they have newfound wisdom to bestow. Maybe their regrets will remind us what really matters in life. Saccharine fantasies of deathbed reconciliations protect us from the full spectrum of our emotions and those of the people we will lose. But romanticizing the dying strips them of their complexity. They are still human, equally capable of picking fights or making amends.

Fantasy also obscures a scarier question: If a loved one or a patient isn’t ready to die, how should we respond?

It is easier to search for readiness than to process what its absence means. Distilling human experience into supposedly self-explanatory concepts like accepting death becomes a bandage that we apply, hoping that the raw emotions about death won’t bleed through. We want neatness and containment, not the spill of grief.

But death is never neat. A good death should be defined by how well and honestly we care for the dying, not by their performance on our behalf. Expecting them to make death a process full of insight and peace only limits our full emotional and spiritual participation in their death. By sacrificing neatness, we can have a conversation about what the dying truly need from us. Understanding their authentic experiences helps us not only to see them more fully but also to prepare, together, for losing them.

Nine years ago, I wasn’t ready to confront my expectations of my patient; doing so would have required dismantling the myths I had about myself as a steward of hope. My expectations were a self-aggrandizing way of holding him at a distance. Fearing that he couldn’t handle a conversation about death was infantilizing, a form of paternalism, however well intentioned. How was I any different from physicians in decades past who withheld patients’ diagnoses to spare them suffering they supposedly couldn’t handle?

To be the physician my patient needed, I had to accept that neither he nor I could be fully prepared for his death. I had to trust that a man three decades my senior was capable of handling life-altering information, that he had experienced tremendous loss before, that nothing and nobody could control how he would contend with this last leg of his life. But instead, I waited for him to initiate a conversation that was my responsibility to start.

Now, as an attending physician, I hear echoes of my younger self when I talk with residents. If they mention that a patient isn’t ready to die, I ask what it looks like for someone to be ready to die. I remind them, gently, that awaiting specific imaginings of readiness may only justify excusing themselves from sharing hard truths with someone whose reactions they cannot anticipate. Abandoning this search may allow them to care for people in a way that might inspire their own versions of preparation.

Nine years ago, I think my patient sensed both my urge to tell him something and my hesitance. “Are you OK?” he asked me one day.

“I’ve been meaning to talk to you about something,” I stammered, looking past him at the eye chart on the wall. “I’m worried about you, because every time I see you, you’re losing weight and seem less like yourself.”

“It’s because I’m dying.” He was matter-of-fact, as though he’d just said it was raining outside.

I was stunned, then relieved. Yet I still struggled to tell him what I wanted to say. “I am so sorry,” I whispered.

“It’s not your fault. My father died in my arms. So did my wife,” he said. “It’s just my turn now.”

“I feel bad that I didn’t talk to you about this sooner,” I said. “I thought I’d upset you or maybe you weren’t ready yet.”

He laughed. “Ready?” he said. “I’ve wrapped my head around being dead, certainly. Not sure if I’ll ever really be ready. It’s not like packing a bag and standing outside waiting for a taxi.”

He died in his sleep a month later, missing his vacation and his friend’s wedding. Even if he told me he was ready, nothing could have lessened the blunt force of losing him.

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A living wake

— Why this Charlottetown man chose to talk about his medically assisted death

Craig Mackie of Charlottetown chose medical assistance in dying in the fall of 2022, and shared his thoughts about it online with family, friends and the public.

Listen to Craig Mackie’s journey in a new Atlantic Voice documentary

By Jessica Doria-Brown

In the weeks leading up to his death, Craig Mackie’s breathing mirrored the short, sharp strokes he was making on his laptop keyboard, documenting his final days.

“At this point in my fading life, I’m struggling to breathe every day,” Mackie said from his kitchen table in Charlottetown, in early October 2022.

A rapid decline due to pulmonary fibrosis had left Mackie, 71, endlessly gasping for air, requiring near-constant support on oxygen. For months, he used his remaining energy to writeat length about his health, drafting dispatches from the confines of his home and sometimes a hospital bed. Then he shared these thoughts publicly, on a blog and through social media.

“The feedback I’ve been getting is that the way I write is — it seems to speak to a lot of people. So I’d like to keep that going,” said Mackie.

The writing continued as he looked into the possibility of a medically assisted death, determined not to die the way his mother had. She too had pulmonary fibrosis.

“She literally suffocated to death,” said Mackie. “And I thought, if I ever have the choice, that’s not what’s going to happen to me.”

Throughout his life, Craig Mackie used his voice to help others. And he decided to do the same as he faced death, and his choice of medical assistance in dying. A documentary by Jessica Doria-Brown.

Starting conversations

Medical assistance in dying, or MAID, has been legal in Canada since 2016.

Mackie’s application was approved in September, and having that option offered him comfort. Throughout his life, he had taken on leadership roles — including at CBC Prince Edward Island and as the former head of Immigrant and Refugee Services Association P.E.I — and sharing his thoughts online about MAID became a way to continue using his voice and connecting with others.

“I wanted… to have people understand that in Canada we have this choice and it’s very special, that it could easily be taken away,” said Mackie.

“As we know from [Roe] v Wade in the States, these things can be legislated and they can be taken away. So I want people to understand that it’s — it’s a compassionate, human choice.”

MAID remains contentious in Canada. Proposed legislation to extend access to people with severe mental illness has come under fire, with changes now delayed until 2024 as the federal government, provincial and territorial partners, and medical communities assess the best way to move forward.

On P.E.I., only a handful of doctors and nurse practitioners work in this area of health care. Dr. Megan Miller, a family physician with extra training and experience in palliative care, said the focus is on helping patients who want to learn more about MAID understand their options.

“It’s a very rigorous, extremely careful process that, as practitioners, we take extremely seriously. And we do that work in a very, careful and considerate way,” said Miller.

“There is never any pressure for patients. They can withdraw their request or change their mind at any time and we would all 100-per-cent support those decisions.”

We are born. We live. We die. It’s what you do with the middle part of that sandwich that matters to me.
— Craig Mackie

In P.E.I., there were 111 MAID deaths between 2016 and 2021, with the numbers growing each year. Miller describes it as a complex and immensely personal choice, with more people applying for it than actually going through with it.

But either way, she says, talking more openly about death — and MAID — helps us all.

“I think it can be an isolating experience for some patients and people experiencing it,” said Miller.

“I think there are a lot of people in the public who don’t know how to support those patients or talk to them because of the awkwardness around it, and we are all better off if we can share some vulnerability and share the uncertainty and have conversations about it.”

A man in shorts and a sweater leans against a wooden post, surrounded by trees.
Craig Mackie was active throughout his life, enjoying hiking, curling and tai-chi. Pulmonary fibrosis brought an end to all these activities.

Opening people’s eyes

By early October, Mackie was ready to set a date for MAID. Just as he had been open about his medical journey so far, he continued to write about his final choice.

“I’m not afraid of death. It is a natural part of the cycle of life. We are born. We live. We die. It’s what you do with the middle part of that sandwich that matters to me,” he posted on Oct. 21.

For Mackie’s friends, following his regular posts became a way to stay connected in his final weeks, and add their own comments, photos and music. His Facebook page became a daily destination for those wanting to read his latest account and see what others had shared.

“I think by Craig being so open about it, it’s opened a lot of people’s eyes to the process,” said Peter Murdoch, a friend and former competitive curling teammate of Mackie’s.

“By Craig doing this, I think it’s going to make the conversation, at least among his circle, a heck of a lot easier for people.”

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New end-of-life doula services focus on rural, houseless populations

— OHSU School of Nursing alum aims to make end-of-life a social, not medical event

By Christi Richardson-Zboralski

As a hospice nurse, Erin Collins, M.N.E., RN, observed that many of her patients were afraid of dying, in denial of their imminent death, and consequently unprepared for it.

Now, she’s seeking to change that: Collins’ new organization, The Peaceful Presence Project, views compassionate end-of-life care as a basic human right, and is creating a social death care movement through education for clinicians, volunteer-based programs, and an innovative concept called end-of-life doulas.

“As health care providers, it is not always about saving lives at all costs, it’s about supporting someone to live and die well,” Collins said. “That often includes where they want to die and who they want to be present.”

Collins is a certified hospice and palliative care nurse with 16 years’ experience in oncology and end-of-life care. She recently completed a Master of Science in Nursing Education at the OHSU School of Nursing, Portland campus, and was selected as a 2022 Cambia Health Foundation Sojourns Scholar.

The mission of The Peaceful Presence Project is to reimagine the way communities talk about, plan for and experience serious and terminal illnesses. Its approach is based on the compassionate communities model of end-of-life care, which asserts people facing serious illness should spend 5% of their time with a health care professional, and views the end-of-life as a social event with a medical component — rather than the other way around. Their doula program helps fill the 95% of time people aren’t face-to-face with their health care provider.

Doulas are people who are trained to serve. Many people are familiar with birth and postpartum doulas, who serve families during and after the birth of a child. End-of-life or death doulas serve families during the end of the life cycle. End-of-life doula courses provide training in how to be a present and active listener; create a calm and compassionate environment; and provide non-medical comfort measures, such as distraction, guided imagery and repositioning to help alleviate symptoms. Trained volunteers may help with legacy projects, including collages, audio or video recordings, and other ways to display physical objects. When needed, they help with memorial planning.

The trainings emphasize how to facilitate compassionate discussions about death-related topics. In 2023, Collins will develop a continuing education program for rural health care workers through her Sojourns Scholar project to improve access to palliative care in communities where specialists often don’t exist.

Community-based end-of-life support

Lily Myers Kaplan speaks highly of The Peaceful Presence doula training she took in 2022. Meyers Kaplan is author of two books on loss and legacy, co-founder of The Spirit of Resh Foundation, the Ashland Death Café and The Living/Dying Alliance of Southern Oregon.

“There was a particular session on approaching end-of-life with veterans, which helped me see the need for diverse approaches to different populations. The difference in end-of-life support between those who have lived in a rural setting, caring for the land, or being actively reliant on their physicality versus someone who has had a more traditional or urban life is quite distinct.

“For example, caregivers who may be responsible for vast swaths of land — anywhere from 20 to 80 acres or more — need support from others who understand their needs,” said Myers Kaplan, who lives in the Applegate Valley, a rural area of Oregon that includes large stretches of land that provide solitude and a level of independence that most urban lifestyles don’t experience.

A caregiver in Depoe Bay reluctantly accepted help from The Peaceful Presence Project after his wife got him on board. After several long years of treatment and many ups and downs, Ray Burleigh’s adult daughter, Becky, had reached a point in her cancer treatment where it no longer worked. Burleigh had strong doubts when the hospice nurse brought up the topic. However, his wife, Jeni, said yes to the help.

With the support of two death doulas from The Peaceful Presence Project, Elizabeth and Erin, the Burleighs found some measure of relief. The death doulas told the family they would bring community support from around the Bend area.

“I was still not convinced. We needed practical help. Becky’s house is hard to heat and she was concerned they were spending too much money on keeping the house warm. It’s heated by a wood stove,” said Ray. “I told them to bring us some wood, not expecting anything. Two nights later, a truckload of wood came — not just one bundle, a truckload. I was shocked! We couldn’t have done this without Elizabeth and the doulas.”

Without the doulas’ help, Ray said they would have had to put Becky in the hospital, and possibly ended up sick themselves.

“The doulas provided night-shift help because we weren’t getting any sleep. They helped with groceries, created a schedule for visiting hours, and the fire,” he said.

Elizabeth and Erin identified 25 people in the city of Bend who were willing to help them out, including neighbors, and many people who are now friends of the Burleighs. Jeni’s family from the same area were also there to help.

Because of his time alongside these doulas, Ray has decided to take The Peaceful Presence Project doula training.

End-of-life care for under-resourced communities

Lora Munn, a yoga teacher who is National End-of-life Doula Alliance proficient, took The Peaceful Presence Project training in 2021.

“End-of-life care is not only being talked about in rural communities, but also actually being spread throughout rural communities thanks to the folks at The Peaceful Presence Project,” she said.  

Munn lives in White Salmon, Washington, and serves all communities located in the Columbia River Gorge. She said she understands that “folks in rural and houseless communities may not have access to resources for the dying and their loved ones in the same way that urban communities do. Because of my education and training through The PPP, I am able to provide these necessary services to my small community. Through my training, I learned how to provide compassionate care for all beings, regardless of housing status or location.”

Because palliative and end-of-life care resources are sparse within rural and houseless communities, Collins and her team facilitate advance care planning to encourage these populations, and others, to think about their end-of-life experience.

“Parts of the state where there is no hospice care or even palliative care need more resources, and one way to address that is to have support embedded in the community,” Collins said.

Through two grant-funded projects, doulas and public health interns have been trained to hold advance care planning “pop-ups” at a navigation center for people experiencing homelessness, as well as in rural health clinics. Navigation centers are low-barrier emergency shelters that are open seven days per week and connect individuals and families with health services, permanent housing and public benefits.

Conversations about what their death experiences could entail are uncommon for people experiencing homelessness, Collins said. The general population tends to choose a spouse or family member as their medical decision-maker. But within the homeless population, a non-family member or someone in their so-called street family is more likely to be their choice. In the absence of a named decision-maker, the hospital may call an estranged family member or someone with whom they are not in contact.

“Equitable care means providing equitable services,” Collins said. “This includes advance care planning for people who are experiencing homelessness. We found that many of these folks have never been asked what their preferences are at end-of-life.”

Educating health care professionals about palliative care

Although it’s important to educate people in the community, it doesn’t stop there. Collins emphasizes the importance of education for all health professionals about serious and terminal illnesses — which is not traditionally an in-depth part of the health care curriculum.

“Nurses and physicians don’t always know how to have those conversations. Palliative care should be part of all health education,” Collins said. “Not just a specialty, but a standard part of education.”

To get participants thinking about ways to support their patients, The Peaceful Presence Project asks them to reflect on key questions: How do you ask someone about what they want if they are dying? How can you have a compassionate conversation?

“Training in communication skills allows you to feel empowered as a provider and as a fellow human being,” said Eriko Onishi, M.D., an assistant professor of family medicine in the OHSU School of Medicine and a palliative care physician at Salem Hospital. “It makes you a better listener through your professional sense of curiosity about other people. You feel as if you are truly walking alongside your patients, guiding them in the right direction, instead of just feeling the way blindly, guessing at each step.

“It’s important to understand that it isn’t about exercising power or control over patients,” Onishi continued. “Rather, it is using this powerful communication tool to support everyone involved, to help them to feel safe because the situation itself is under control.”

Onishi is passionate about the need for such conversation skills training.

“To be a clinician, both knowledge and communication skills are equally essential — it’s never a one-or-the-other choice,” Onishi said. “As a physician, my job is to provide medical guidance to the patient and their family, guided by the best intentions and a caring heart. If I cannot do all of these things, I cannot do my job.”

Ultimately, Collins said, it’s up to the individual patients to discuss how they want to experience their end-of-life, knowing that flexibility and adaptability are key. Having a plan is important, and when things don’t go according to plan, community-based support for death and dying can alleviate a stressful process for all involved — providing what people need to live and die well.

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