Category: Talking about death

Posted on

If you could, would you want to know when you will die?

By

Would you want to know when you’re going to die? I’ve thought about this question quite a bit recently.

>Several months ago, I picked up a new novel titled “The Measure” by Nikki Erlick, which opens with quite the plot twist. One morning, everybody on the planet (ages 22 and up) wakes up to a surprise at their front door: a small wooden box, personally engraved, with the words: “The measure of your life lies within.” Each box contains a string whose length determines the length of the recipient’s life.

The characters now face a gut-wrenching decision. Do they open the box and find out how long they will live? If yes, what will they do with that knowledge? If not, which means they’re choosing not to know, will they live any differently?

The question is not entirely a hypothetical one. A few months ago, out of a morbid curiosity, I visited Death Clock, a website that labels itself the “Internet’s friendly reminder that life is slipping away … second by second.”

I entered the month, day and year of my birth, my gender, mood (from pessimistic to optimistic), whether I smoked tobacco, and my height and weight. I hit the submit button, and a second later came my answer: “Your personal day of death is Wednesday, April 23, 2031.”

If true, I had nine years to live; I’d be a few months short of my 74th birthday.

About the same time, my sister, who is 60 and being treated for advanced ovarian cancer, was told by her oncologist that time may be running short. Of course, it was only a doctor’s guess and her current chemo regimen has significantly improved her tumor markers. Regardless, she’d be considered a “short stringer,” one of those who will die before their time, in “The Measure.”

I’ve wanted to be a “long-stringer,” ever since I had cancer in my 20s, but thanks to Erlick’s book and now my sister’s illness, I’ve recognized that focusing on exactly when my time is up is unknowable and probably not particularly good psychically. So I’ve decided instead to focus on how I want to spend those years, not just the number of them.

In any case, longevity doesn’t come with a guarantee of good health, and those “bonus years” may hold less value if confined to home or suffering from debilitating conditions.

As the characters in “The Measure” discover, a long string (meaning many years of life) does not equal happiness. And while the characters who get short strings initially feel as though they’ve come up, well, short. gradually, they find greater meaning and richness in their comparatively fewer days. Their newfound knowledge alters their perspective on what matters.

One of the novel’s characters, Nina, who is married to one of the short stringers, says: “It’s easy to look at our time together and think that we were so unlucky. But isn’t it better to spend ten years really loving someone, rather than forty years growing bored or weary or bitter?”

After her partner, Maura, dies — indeed early — Nina explains that their relationship “felt deep, and it felt whole, despite its length. It was an entire, wonderful tale in and of itself.”

All this brings me back to my little sister, Julie, and the deep angst I feel at what may turn out to be a premature death. I want her to live forever. (Maybe not forever, but, please, longer than me!)

To help me with these stomach-wrenching feelings, I’ve turned to friends, my therapist, a higher-dose antidepressant, meditation, ketamine and Elisabeth Kübler-Ross’s work on the five stages of death and dying. All of which work — some.

Oddly enough, “The Measure” has provided me with a greater sense of peace and acceptance than I’ve found anywhere else. Don’t get me wrong, I still hate that Julie is likely to live fewer years than her older brother. But I’ve watched and learned as Julie has lived as big a life as anyone could imagine. This proved true before her diagnosis but even more so in recent years.

Soon after her diagnosis, Julie emailed me to say that she’d already had a full life, even if it’s cut short. Since then, she has focused on what matters to her — seeing her daughters graduate from college, celebrating 35 years with her wife, going away on trips with the whole family, visiting with close friends.

In other words, Julie has fine-tuned those relationships that mean the most to her and not dwelled on those that she may miss out on in the future.

I remember thinking at our recent Christmas dinner about a quote attributed to Ralph Waldo Emerson: “It is not the length of life, but the depth of life” that matters. And then I thought about what Nina, in the novel, tells us: “When we think about the greatest love stories ever written, we aren’t judging them by their length … . [A]nd even though I’ve been given more chapters than Maura, her pages were the ones you couldn’t put down. The ones that I’ll keep rereading, over and over, for the rest of my life. Our decade together, our story, was a gift.”

Amen.

It’s not about how many chapters we’ve lived but how rich and exciting those chapters are. Or, as the late poet Mary Oliver wrote, “Tell me, what is it you plan to do with your one wild and precious life?”

For starters, I’m not going to listen to the Death Clock. I don’t want to know when I’m going to die — but I do want to live each day as though it could be my last.

Complete Article ↪HERE↩!

Posted on

I Helped My Mother To Live and Later Die

— After begging her mother to live longer, this author later honors her mother’s wishes for how she wanted to be treated at the end of her life

Kathleen and her mother, less than two years before Mary Elizabeth’s death

By Kathleen M. Rehl

“Please don’t die now, Mom! I can’t handle two funerals back-to-back.”

In a panic, I squeezed my mother’s hand as I sat beside her bed. The hallway’s stark white light streamed through her doorway. Announcements crackled over an intercom as an equipment cart clattered past her room. Mom’s roommate moaned in her sleep before returning to rhythmic snoring.

Then, finally, a sweet-faced nurse’s aide said I could stay beyond regular visiting hours. Staring intently before she spoke, Mom said, “Your father came to me in a dream last night and told me it was time to let go and be with him again.”

Mom Loved Her New Life

Flashback to Dad’s death from colon cancer, a few days after his 80th birthday. After he passed, Mom moved over 1,000 miles from her house on a dusty, isolated road to live near me and my husband, Tom, in Florida.

She blossomed like the red roses she cared for near her apartment.

Leaving sadness and grief behind, she chose a sunny independent living apartment in a continuing care retirement community (CCRC). There she blossomed like the red roses she cared for near her apartment.

Mom made new friends fast, joined afternoon card games, shelved books at the community library, tended a meditation garden, participated in church activities, baked yummy chocolate chip cookies to share, traveled to visit a few relatives across the country, and enjoyed an occasional happy hour glass of sangria with girlfriends.

In addition, Tom and I included Mom in many local activities. “I love my new life here,” she often said. Mom’s newfound happiness lasted almost two years.

Life Changed

A serious fall interrupted Mom’s joyful journey. After spending Thanksgiving with Tom and me, my mother fell in her apartment, shattering her femur. Mom’s next-door neighbor’s frantic phone call brought the ambulance.

At the hospital, we authorized emergency orthopedic surgery. A few days later, she transferred to her CCRC’s skilled nursing care wing, with weeks of physical therapy scheduled. Her spirit was crushed.

I was devastated, of course, but the knockdown punch to the gut hit in early December. That’s when my husband visited his doctor, feeling unusually tired, with jaundiced skin and abdominal pain. He called me at work later, saying he’d been admitted to the hospital for specialized testing.

I bolted from my desk and didn’t return to it for many weeks. Meetings and phone calls with a medical staff filled our coming days. By week’s end, we knew his diagnosis was a callous killer — late-stage inoperable and untreatable liver cancer.

His prognosis was death within a few months. My 72-year-old husband chose home hospice care rather than a war he couldn’t win.

Mom Rallied

“All right! I won’t die now,” Mom said from her nursing home bed when she understood Tom’s death sentence. And that’s just what she did.

Mom mustered her petite body’s life force, willing her health to improve.

She completed prescribed physical therapy, navigated with her fractured leg plus a walker, and moved back into her apartment with daily assistance from an aide and friends.

I boomeranged between caring for my mother and my husband. Then, Tom’s progressive downward spiral gathered speed while Mom’s condition stabilized. He died in my arms on February 12, 2022 with my brother beside us both.

A packed church celebrated my husband’s life. Mom sat near me as I stood in the funeral’s receiving line, both brokenhearted.

Years Before, We Talked About Care Preferences

“I don’t want you kids to have to pull the plug on me someday,” Mom said over a decade before.

Several years before Dad’s death, our family discussed health care preferences if we experienced a severe illness. My mother had once carried the burden of being the one who authorized disconnecting her aunt and mother from life support after each suffered debilitating strokes.

“I didn’t know what they would have wanted because we never talked about topics like that back then.”

“I didn’t know what they would have wanted, because we never talked about topics like that back then,” she said. Mom felt she “killed Aunt Frances and your grandmother.”

Dad, Mom, Tom, and I completed the Five Wishes advance care planning document years before we updated our estate plans. It’s easy to understand, covering one’s personal, spiritual, medical, and legal wishes at the end of life.

In addition, it identifies the person designated to make care decisions when you can’t do it yourself. After my father passed, Mom revised her plans, naming me the primary health care agent.

The Beginning of Mom’s Ending

After my mother told me about her dream of Dad, she didn’t speak of that vision again until Tom died. Then her health plummeted within a month. Complications put her in the hospital again.

Two older adults getting off a bus. Next Avenue, caregiving for mom
Mom and Tom in St. Petersburg

That’s when she repeated that Dad was preparing to welcome her. She wanted to go. Tearfully hugging my mother, I told her it was OK. I understood. I wouldn’t hold her back.

They requested my mother’s advance health care documents when she was admitted to the hospital. I gave them a copy of her Five Wishes form, verifying she didn’t want life support treatment to keep her body alive when she was close to death.

Even though this paperwork was accepted and filed, Mom’s plans were almost upset when she went into immediate cardiac arrest in the middle of the night. Finally, exhausted, I left her hospital room to go home for a shower and a few hours of sleep. But a hospital nurse called after midnight, saying they were taking Mom to the intensive care unit (ICU) for life support.

“No! That’s not what she wants! Read her advance care directives!” I yelled over the phone. “I’ll be there as fast as I can. Please don’t move Mom!”

I pulled on my jeans and raced for the car, driving in the dark over the speed limit. I ran to her room with a copy of Mom’s Five Wishes form. Assistants started rolling her bed into the hall on the way to the elevator and the ICU.

Committed to Her Wishes

The nurse said she needed to get the doctor. He looked over the forms, stepped away for a few minutes, and returned to ask what I wanted. “Plain palliative care, please!” I answered.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care.

Fast forward. That’s precisely what happened, with my mother moved into a private hospice care room. My brother and I were allowed to camp with her in that room for the remaining three days of her life.

We facilitated a few short phone calls with her family, sang to her, read her favorite scriptures, and monitored her morphine. Then, before slipping into her final slumber, she told us of a clear new vision, where she saw relatives waving from across a bridge and preparing for a party.

“They have to wait for me to cross over that bridge before starting the festivities,” she said. Tom and my Dad were in that welcoming crowd, along with her mother and aunt. She finally said, “Awesome!” as she crossed her bright bridge.

Most Don’t Have End-of-Life Conversations

In June 2020, the National Poll on Healthy Aging was conducted for the University of Michigan’s Institute for Healthcare Policy and Innovation. A sample of U.S. adults aged 50–80 was asked about their advanced care planning.

Nearly two in five adults aged 50–80 had not discussed their health care preferences if they experienced a severe illness. More than two in three hadn’t completed an advance directive and durable power of attorney documents.

More than half of the folks who had not talked about their care preferences with others or completed related legal documents said it was because they needed to take the time to do this.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care. I hope my story encourages conversations with you and your loved ones. It’s a precious gift you can give them.

Complete Article ↪HERE↩!

Posted on

Dignity in death

— What is voluntary assisted dying

Voluntary assisted dying is a way to take control over death.

By Elissa Napier

Despite the taboo around VAD, the procedure has become legal in the majority of Australian states, allowing those who are suffering to breathe a sigh of relief as they seek to gain some control back in their life, and put dignity back into death.

Whether or not a person decides to access this service, Hall and Wiley said just knowing it’s available has helped to ease the mind of so many Australians.

What is voluntary assisted dying?

Voluntary assisted dying is a medical service offered to those who are eligible, to successfully end the suffering of someone in the late stages of a terminal illness by taking a prescribed substance to end their life on their terms, and as Wiley said, it’s all about choice.

Eligible people can choose if they want to administer the fatal substance themselves, or have a practitioner do it for them; they can choose when and where they’d like the event to take place, ensuring providing comfort and dignity in death.

VAD was kickstarted in Australia by broadcaster Andrew Denton, who watched his father suffer a “drawn out, desperate death”. Denton’s charity, Go Gentle, has played a major role in getting VAD laws passed in all Australian states.

So, what are the eligibility requirements?

A person must be:

  • diagnosed with an advanced disease or medical condition that will cause death within the next 12 months;
  • is suffering from intolerable levels of pain and discomfort;
  • is of sound mind to make the decision;
  • is acting voluntarily and without coercion;
  • is at least 18 years old;
  • an Australian citizen or permanent resident.

The process

Given the gravity of making the decision to undergo voluntary assisted dying, it’s not as simple as just asking for medication.

A person must make three request’s to a medical practitioner within the designated 9-day period. However, once a request is made, and right up until the administration of the fatal substance, there is no obligation for the person to follow through with VAD.

Once the first request has been made, a person will need to undergo a consulting assessment to ensure eligibility, and once the final request has been made, they will then need one final review before the official administration decision is made.

The assessments must be completed by two separate doctors who have received mandatory VAD training.

Source: Queensland Government

Whilst practitioners can refuse to participate based on conscientious objection, the doctor must still inform the patient of the process and provide other practitioners names who can assist; the same goes for religious facilities, they cannot stop or inhibit a practitioner from fulfilling their job at the request of a patient.

Once the process is completed, a touching detail to ensure dignity is maintained even after death, VAD will not be written as cause of death on a person’s death certificate; it will simply state the illness or medical condition the person was suffering from.

By allowing a dying person to take control of their death, dignity can be restored to its fullest.

Complete Article ↪HERE↩!

Posted on

Death with dignity is not euthanasia

By Kristen Fuller, MD

We are dedicated to helping our patients, but there are limits to what we can do to help.

A clinic patient of mine was dying of pancreatic cancer. He was as orange as a pumpkin and had an implantable morphine pump for pain. He was in palliative care and hospice, and regardless of medications to help alleviate his symptoms, he was miserable.

His suffering was unbearable. He wanted nothing more than to pass away sooner, in peace, and no longer be in pain.

“‘This is not living,’ he told me. ‘I am just waiting to die.’”
— Kristen Fuller, MD

He voluntarily stopped eating and drinking, refused a feeding tube, and eventually developed severe psychosis. I consulted with his medical team members about offering him “death with dignity,” but they were uncomfortable with this.

He passed away on day 12 by starving himself. His loved ones were beyond scarred by this experience.

The COVID-19 pandemic has exposed the profound tragedy of people dying alone in hospitals, suffering and scared, without the comfort of their loved ones. The pandemic demonstrated modern medicine’s limits in relieving suffering and granting someone peace.

How can we best serve our patients in such situations?

Ways to help patients at the end

Medical aid in dying—also known as death with dignity—is the voluntary act (for both physician and patient) to help end the suffering of a mentally competent adult patient who is terminally ill with less than a 6-month life expectancy (hospice-eligible). The patient has the right to ask for a prescription medication they can self-ingest to die peacefully.

Individuals who want this end-of-life care option tend to be offended when it’s called “assisted suicide,” because they desperately want to live, but are going to die whether or not they utilize this avenue.

The Journal of Palliative Medicine published peer-reviewed clinical criteria for “physician aid in dying”—not assisted suicide.[1] The term “physician-assisted suicide” is archaic and stigmatizing to physicians and patients who have experienced death with dignity.[2]

In the US, death with dignity or medical aid in dying are explicitly distinguished from euthanasia.

Euthanasia, also called mercy killing, is administering a lethal medication by another human being to an incurably suffering patient.[3]

It may be voluntary (requested by the patient) or involuntary. Euthanasia is illegal in the US, but voluntary euthanasia is legal in Colombia, Belgium, Canada, and Luxembourg, and is decriminalized in the Netherlands.

History and guidelines

Medical aid in dying was first passed as legislation in Washington state in 2008, and has since become available for patients in Washington, DC, California, Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Vermont, and Washington.

Multiple safeguards are in place to prevent cases of abuse or coercion.

The patient must be deemed competent, two physicians must authorize the medication, and there’s also usually a 15-day waiting period between the first and second doctor’s approval before a medication is authorized.

Suppose the patient chooses to take the medication after authorization. They can ingest the pills at their chosen time, choosing the manner and location of their death—one last act of control in the face of a debilitating illness.

What does the AMA say?

The AMA adopted a neutral position on death with dignity in 2019, affirming for the first time that “physicians can provide medical aid in dying according to the dictates of their conscience without violating their professional obligations.”[4]

The Association stipulated that physicians who participate in medical aid in dying adhere to professional and ethical obligations, as do physicians who decline to participate.

Other well-known national medical associations that have taken a neutral stance on death with dignity by withdrawing their opposition to the practice include the American Academy of Family Physicians, the American Academy of Hospice and Palliative Medicine, and the American Academy of Neurology.

Empowering patients

According to the Oregon Health Authority, approximately one-third of patients who receive prescription medication to pursue death with dignity in Oregon do not take the medication.[5]

However, they are said to be relieved that they are in control at the end of their life, which helps alleviate some anxiety about potential suffering in their last days. Each patient should be empowered to make end-of-life care decisions based on their unique culture, beliefs, and spiritual values.

“The power should be in the patient’s hands.”
— Kristen Fuller, MD

Hopefully, we can be conduits to give our patients respect, autonomy, and privacy during their last days.

Complete Article ↪HERE↩!

Posted on

What an End-of-Life Doula Can Do for You

— Sometimes, you need help navigating your grief and the dying process

Death and dying aren’t always easy subjects. Conversations about your end-of-life desires and the legacy you want to leave behind can be particularly difficult for some individuals, as well as their family and friends.

If you’re diagnosed with a terminal illness, understanding how much time you have left and deciding how you’ll spend it can be difficult to navigate. For friends and family members — especially for young ones who’ve never experienced a death in their family — understanding what happens when someone dies can be confusing and challenging.

When we broach the topic of death, we’re forced to confront our own mortality and come to terms with what will happen to our bodies when we die. But when we face the death of a loved one, we’re confronted with a different set of challenges. Sometimes, we’re dealing with an impending death long before it happens. Other times, death happens swiftly and suddenly in the most unexpected ways.

No matter how someone dies, we each find different ways to grieve the loss of a loved one. Sometimes, we have to handle all the logistics around someone’s funerary services. And then, there are all the things left unfinished in the wake of that person’s death — their hobbies, their dreams, their bills and their responsibilities.

While dying can sometimes be a complicated experience, having help along the way to process your grief and understand what’s happening can make the act of dying more manageable. That’s where having an end-of-life doula can help.

Palliative medicine physician David Harris, MD, and end-of-life doula and social worker Anne O’Neill, LSW, CDP, explain how end-of-life doulas work together with palliative care and hospice teams, and exactly what you can expect when hiring an end-of-life doula.

What is a death doula?

Birth doulas and death doulas function like two sides of the same coin. A birth doula is a trained professional that assists someone before, during and after childbirth. They work alongside your healthcare team to provide emotional and physical support, education and guidance to make sure you have a positive birthing experience.

Similarly, a death doula — also known as an end-of-life doula, end-of-life coach, death midwife or death coach — assists a dying person and their loved ones before, during and after death. An end-of-life doula provides emotional and physical support, education about the dying process, preparation for what’s to come and guidance while you’re grieving.

“A doula wants to do as much as they possibly can to help facilitate what the person and their family need,” says O’Neill. “Doulas make sure the threads are connected between the dying person and the important people in their lives, including their hospice team.”

End-of-life doulas aren’t licensed to provide any medical assistance, but they may advocate for the dying person’s wishes and needs while working together with healthcare providers.

“There is value in having an interdisciplinary team, with the idea that different fields have different things they bring to the table,” notes Dr. Harris. “The best way to give great care to someone is to involve different viewpoints, different levels of expertise and different types of expertise. End-of-life doulas and religious leaders both fall into that framework.”

In recent years, as a result of the COVID-19 pandemic and the surge of related deaths worldwide, there’s been an increased interest in hiring end-of-life doulas to help those who were dying and those who were grieving. There’s also been an increased interest in people wanting to become licensed as end-of-life doulas.

“For many people who are approaching the end of life, being prepared and having everything in place for when they do die is a very important thing. They don’t want their families to be scrambling, and they have certain ideas about what they want their funeral to look like,” explains Dr. Harris.

“Usually, in palliative care or hospice, we give them the space and a listening person to help them plan out what they really want. For many, it’s not as much about finding a funeral home or finding resources as it is just a hard thing to talk about.”

And in many ways, the core function of an end-of-life doula is to be present and listen to the needs of the person who’s dying and the needs of those around them who are grieving.

“We don’t die twice. We only get one chance to do this,” says O’Neill. “When you’re bringing in a doula, you’re bringing in a wide range of experience and a real desire to want to be there with that person and to make it as good of an experience as it can be.”

What exactly does an end-of-life doula do?

Each dying person’s needs are unique to their specific situation, but the services offered by an end-of-life doula could include a mix of the following:

  • Providing the opportunity to talk openly and honestly about the dying process.
  • Alleviating the anxiety, guilt and shame often associated with death and dying.
  • Developing a plan for how the person’s environment looks, feels, sounds and smells.
  • Coordinating with family and friends to evaluate visitation.
  • Overseeing 24/7 care alongside healthcare providers like hospice and palliative care.
  • Providing education and guidance related to other medical services like do-not-resuscitate orders and healthcare power of attorneys.
  • Creating guided meditations and rituals specific to a person’s religious faith or spirituality.
  • Sitting vigil with a person as they near their final moments.
  • Assisting with obituaries and planning funeral services.
  • Providing supplemental grief counseling and companionship after someone has died.
  • Finding creative ways to honor the person after they’ve died, which can include the person who’s dying as a part of that process and exploring that person’s life and legacy.

“Our goal is to provide the kind of support people need so that families aren’t exhausted. We want families to have a chance to rest and we want to ensure that people who are dying are not unsafe at home,” O’Neill adds.

Part of that process is making sure the person who’s dying is aware of what’s happening and, if they’re able or they desire it, to give them the space to confront their own grief and be an active participant in their dying process.

“A dying person is grieving their losses, too. They’ll never see their partners again. They’ll never do the things they love again. So, the doula allows a dying person to express their losses,” says O’Neill.

Along the way, an end-of-life doula may help with what’s referred to as “legacy work,” a process O’Neill says is about exploring the most meaningful moments of someone’s life and finding ways to pass on their legacy. Sometimes, this looks like putting together a scrapbook of memories. Other times, it’s about making those phone calls and writing those letters to long-lost friends or siblings and finding closure in other ways.

“Doulas can help facilitate those conversations to make sure they tie up those loose ends and they’re able to say what they want to say before it’s too late,” she explains. “I had one gentleman who always wore flannel shirts his whole life. He and I cut the buttons off of his flannel shirts and made bracelets for his granddaughters so that they would have those to remember him after he died.”

And end-of-life doulas can extend their services to those loved ones who are grieving by providing education and resources along the way. Sometimes, that means a doula may have to call the funeral home to announce the death of the person who died and make an appointment for the funeral. Other times, a doula may just be on standby should the family need their support during the final hours of a person’s life and in the weeks or months after they’ve died.

“Our hearts have to fill back up again after such a loss,” notes O’Neill. “As doulas, we’ve come to know these families, so we are able to give them what support they need afterward. We don’t just close the book and say, ‘On to the next one.’”

What’s the difference between a death doula and hospice?

End-of-life doulas are similar to hospice care in that both offer counseling, spiritual support and other nonmedical services to help a dying person and their loved ones during their final days. The medical piece is what sets hospice care and end-of-life doulas apart because doulas are typically not licensed to provide any hands-on medical assistance. That said, doulas are fast becoming an integrated part of hospice care teams. If your hospice care team doesn’t have an in-house doula, if you decide to hire one, the hospice care team should work with them throughout the dying process.

“An end-of-life doula’s approach to care is very consistent with hospice care and they’re very synergistic,” says Dr. Harris. “Where end-of-life doulas excel seems to be advocating for people who are dying, planning and having some of those crucial conversations.

“The medical piece is just a small part of somebody’s end-of-life experience and we have to acknowledge, as healthcare providers, that sometimes the medical pieces aren’t the most important pieces. Sometimes, it’s connecting, from one human to another.”

What type of training or certification does a death doula have?

There are a variety of accreditations available to those interested in becoming an end-of-life doula. Although there aren’t universally recognized requirements for becoming an end-of-life doula yet, organizations like the International End-Of-Life Doula Association and the National End-Of-Life Doula Alliance offer training and certification requirements that include:

  • Reading required materials.
  • Completing a work-study or class.
  • Participating in a multiday training program or workshop.
  • Obtaining recommendations from healthcare providers and people they’ve assisted.
  • Following a strict code of ethics.

“Individuals and their families are very vulnerable when they’re at the end of their lives, so that ethical piece really needs to be there and needs to be pronounced,” stresses O’Neill.

Should you hire a death doula?

The decision to hire an end-of-life doula is a very personal decision, one that should be discussed with you and your family in the same manner of understanding and respect that any other end-of-life decisions should be discussed.

“It’s not easy being cared for. When you see your doctors, you’re expected to sort of be able to clarify and explain exactly what’s going on physically, emotionally, spiritually. At the same time, you’re not feeling well. So, that’s a really hard thing to do,” states Dr. Harris.

“Having somebody like a death doula who has experience taking care of people at the end of their lives and who has the time to sit and be with that person and help them figure out what’s going on can be really valuable.”

Complete Article ↪HERE↩!

Posted on

The toughest conversation

— Talking end of life with patients

By Kristen Fuller, MD

I saw my first code during my third year of medical school. A day later, I called my mom to discuss her last wishes if something tragic were to happen to her.

I did not want her to be that patient on the gurney being violently coded if that was against her wish. It took a few years of coaxing her into having these tough conversations with me, and after enough coercing (and having to deal with a few hair-raising medical issues), she told me exactly what she wanted to do when the time came.

I regularly try to talk about this with patients, even if they give me pushback, as I firmly believe that every person should have the power to make an educated decision on what they want to be done at the end of their life.

Despite our regular proximity to death, many physicians may lack the necessary skills to have direct, detailed conversations about code status, long-term prognosis, quality of life, and end-of-life care.

The last thing we want is for our patients to have to make these very emotional and difficult decisions in the last few months—or even minutes—of their lives. Or for their family members to be forced to guess their loved one’s end-of-life wishes after they’ve become incapacitated. But we can help them prepare for that time—provided we know how to do so.

They don’t teach us about death in medical school

During my medical school and residency, we didn’t spend much time discussing death, having end-of-life conversations with patients and families, how to manage pain or anxiety during the dying process, or the intricate differences between hospice and palliative care.

Nobody taught us how to approach or use advance directives, or when to discuss them with patients. Such terms came up in conversation and during rounds, but there was no teaching method or structured learning objective—or even conversations about them.

We learned how to have end-of-life family meetings while watching senior residents, whose styles and conversational skills were all over the map. Death was not a natural, omnipresent, physiological process but rather the unspoken consequence if we did our jobs wrong—almost like a failure.

Becoming comfortable with death

“Death is a normal part of life. Everyone dies and deserves to die with dignity, with the choice of how they take their last breaths.”
— Kristen Fuller, MD

Luckily, in my final year of residency, I had the privilege (after a lot of kicking and screaming) of taking three important elective rotations: palliative care, hospice, and pain management and rehabilitation.

During these months, I learned how to be comfortable with death and dying, appropriately manage pain in all its different forms, have difficult conversations with patients and families about these topics, and give myself grace and compassion when a patient dies.

These skill sets have tremendously helped me in my professional life—as well as in my personal life, as I am often the one having the difficult conversations on these issues with my family members.

Taking control

A Kaiser Family Foundation study reported that only 56% of adult Americans had a serious conversation about healthcare preferences, 27% wrote down their preferences, and just 11% discussed them with a healthcare professional.[1]

The most powerful thing patients and families can do to take control of their healthcare is to think through what’s most important to them if they become seriously ill. They should also identify a person they trust to represent them if they can’t speak for themselves.

It’s never too early to raise the topic

“I always encourage physicians and family members to ask questions about end-of-life care early on, as it’s never too soon to start talking about it—but there is a point where it may be too late.”
— Kristen Fuller, MD

During office visits, try to discuss code status and advance directives with the patient, and encourage family members to talk about it with each other.

Before asking these questions, you may want to discuss why you’re having this conversation. Perhaps you can offer a professional or personal experience you had with death when a patient or family member didn’t have any decision-making powers.

“I often tell patients about my first experience as a medical school student witnessing a code.”
— Kristen Fuller, MD

Here are some possible conversation starters:

  • What is important in your life? How would you like to be remembered?
  • What experiences have you had so far with death? What do you think death means?
  • What will happen when you die? Do you need to make any plans or choices now?

How to discuss end-of-life care

Choose a quiet, comfortable, private space to meet without interruptions (turn off your electronics). Ask your patient what they know about their condition and its prognosis so you can better understand their knowledge and mindset. The goal is for the patient to lead the conversation and tell you what they want to do.

If there are discrepancies between what you and the patient know about their situation, it’s your job to tell them the truth. Use plain language, speak slowly and clearly, and make sure they can hear and understand you. Then give them a few moments to process this information before asking if they have any questions.

Determine what your patient wants in the last years, months, or weeks of their life. How do they wish to take their last breaths? How would they like to spend their time? Do they want to be coded when their heart stops? Do they want to be readmitted to the hospital if their condition worsens? Would they want palliative or hospice care?

“It’s our job to learn and document the patient’s specific wishes. In doing so, we must be honest and educate the patient on the differences between hospice and palliative care.”
— Kristen Fuller, MD

Focus on realistic goals

An author writing in Family Practice Management provided insight on how to guide patients’ expectations about the end of life.[2]

“Redirecting the patient’s focus from ‘cure’ to a more reasonable goal, such as living long enough to complete certain tasks (healing relationships or witnessing certain events such as a wedding or birth of a grandchild) can be helpful,” the author wrote. “Even a pain-free death could be a goal.”

The author added that “it is possible to have both qualities of life and quantity of life,” as research showed that patients who receive hospice care live longer than those who pursue aggressive treatment.

Complete Article ↪HERE↩!

Posted on

Death Cafes Spread Rapidly Around the World

Jon Underwood held the first Death Cafe in 2011 at his East London home. This single event lit a movement that spread quickly to 82 countries, hosting over 15,000 Death Cafes on nearly every continent by 2023. What is a Death Cafe, and why is the world so interested?

By Sharleen Lucas, RN

  • Death Cafes are informal, social events where people talk freely about death without any agenda, objective, or theme.
  • Anyone can host a Death Cafe if they sign up to follow the Death Cafe guide.
  • Death Cafes are spreading rapidly around the world and attracting diverse attendees.
  • Many global and cultural factors combine to cause such rapid growth of Death Cafes.
  • Studies suggest talking about death in a safe, non-judgmental atmosphere is healthy.

What is a Death Cafe?

A Death Cafe is an informal social event where people, often strangers, get together to talk freely about death over cake and tea. As stated by the Death Cafe franchise, the mission is “to increase awareness of death with a view to helping people make the most of their (finite) lives.”

A host guides the gathering’s discussion to ensure there is no agenda, objective, or theme. Instead, the goal is to provide a free-flowing and open conversation about any aspect of death.

Technically, Death Cafe is a non-profit social franchise, meaning the Death Cafe founders oversee the movement’s branding, process, and mission. To use the name “Death Cafe,” one must register with the organization to plan and host a gathering.

A registered host must follow four Death Cafe principles as quoted from their website:

  • With no intention of leading participants to any conclusion, product, or course of action.
  • As an open, respectful, and confidential space where people can express their views safely.
  • On a not-for-profit basis.
  • Alongside refreshing drinks and nourishing food — and cake.

What a Death Cafe is not

A Death Cafe is a grassroots event anyone can host. Since it’s a simple, free-flowing conversation, professional credentials to host aren’t required.

Death Cafes are not grief support groups or counseling sessions. They do not meet to promote the agenda of any ideology or end-of-life organization. Hosting a theme-related gathering, inviting guest speakers, or handing out educational materials is against the Death Cafe guide.

Hosts allow people to talk about their beliefs about death but do not allow participants to press others to agree. Instead, the conversation is a curious exploration about dying to help people live now and gain greater peace.

Death Cafes attract diverse people

Because Death Cafes touch a vulnerable place in the human heart, the gathering reaches beyond race, culture, and nationality.

In 2020, a team of researchers from the University of Glasglow published a study on the global spread of Death Cafes. They interviewed 49 Death Cafe hosts in 34 countries to explore how and why the event spread globally.

The team’s study confirmed the spread of the Death Cafe movement from the UK to North America, Europe, Asia, South America, and Africa, providing evidence that the movement attracts diverse attendees.

The café hosts reported a wide range of participant ages. Attendees varied from teenagers to 80-year-olds, sometimes in one group, while the hosts’ ages ranged from 20-70.

In gatherings of 2-70 people, the participants were primarily women, but men also found the topic engaging.

The location of Death Cafes was diverse, too. According to the study, the cafes “took place in pubs, function rooms, leisure centers, people’s homes, and even cemeteries.”

Why are Death Cafes growing so fast?

Like birth, death is a universal human experience. However, unfortunately, our ideas about death are heavily cloaked in personal fears and cultural beliefs, creating taboos and mysteries we’re afraid to question or discuss.

Beyond personal beliefs, today’s medical industry treats death as a medical event rather than a sacred human experience. In addition, many communities now leave deathcare — the care of the human body after death — to medical and funeral professionals behind closed doors.

When you add these factors to the COVID-19 pandemic, a large baby boomer generation, rising chronic illness rates, and the relentless mental health crisis, it’s not surprising curiosity about death grows worldwide.

At the same time, cultural movements like death positivity, palliative care, and green burial options increase the safety of talking about death. More people today question their spiritual traditions, too, leaving them to wonder more about the dying process and the afterlife.

Medical assistance in dying (MAID) is growing globally as countries like Canada loosen their rules. More people are thinking about medically-assisted death — also called death with dignity and physician-assisted suicide — even if they’re not near the end-of-their lives.

The compounding effect of all these factors leaves a gaping human need to talk about death and dying. That energy for discussion and connection drives the growth of Death Cafes worldwide.

Talking about death is healthy

As death awareness grows globally, so does the science. Experts and researchers today argue that talking about death is good for you. It helps you clarify your beliefs on quality of life both now — even if you’re young — and when you’re dying.

However, talking about death isn’t easy. People’s desire to face the subject varies widely. Death Cafes seem to help those eager to talk about it as well as those afraid of the discussion.

In the University of Glasgow’s study, hosts reported that “strangers are just opening up,” and conversations happen without “a single minute of silence throughout those two hours.”

The increasing number of Death Cafes is anecdotal evidence that people find talking about death worth their time. In a socially enjoyable setting where it’s safe to work through your thoughts and beliefs without judgment and dogmatism, Death Cafes help people face the subject.

“Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life.”— Steve Jobs, Stanford commencement speech in 2005

Finding or hosting a Death Cafe

Finding a Death Cafe is simple. Visit the online Death Cafe map to find one located near you.

If you can’t find a nearby gathering, consider hosting one. The Death Cafe franchise is clear about how to organize and lead a discussion. Visit their webpage for hosts and walk through the steps to gathering people together.

The human need to talk and connect is the thread binding generations, races, and cultures throughout history as it weaves through time. Death’s reality and mystery bind us in a common and intimate experience. Death Cafes offer people a friendly setting to explore and break death taboos without judgment.

Complete Article ↪HERE↩!