Tag: End of Life Care

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Ushering Pets Gently to the End

— A caring and dignified death by in-home euthanasia can help bring solace to grieving pet owners

Kerri Miller’s dog, Cookie

By Kerri Miller

The first message I left on the veterinarian’s phone last winter was so distorted by tears and grief that I had to call back twice to repeat the details.

It had been 26 hours of sleeplessness and stress since our older shepherd’s legs had given way beneath her and I realized she wouldn’t be able to stand again on her own.

We were fast approaching a moment where her diminished quality of life — she wasn’t eating much and had given up on our daily walks — was edging into suffering. My husband and I anguished over what we knew was inevitable. We’d used in-home euthanasia services when our previous dog had developed cancer, but I think I would’ve been comforted if I’d known about the advice that veterinarians like Dr. Kenzie Quick gives to clients in times like these: “Better a moment too soon than a day too late.”

“This little buddy of mine has seen me through so many things that no one else has.”

Quick, a Tucson, Arizona, staff veterinarian with Lap of Love, a company that provides in-home hospice and euthanasia service for pets, acknowledges that knowing exactly when to make the decision to put a companion animal out of their pain is a delicate one. “There is no perfect time,” she says. “Any time between when their quality of life is no longer good but they’re not suffering. Any time in that zone is the time to say goodbye.”

Saying goodbye to Rex, Heather Boschke’s Yorkie/Pomeranian mix, was something she dreaded. “He’s seen me through job transitions, two boyfriends and one fiancé. This little buddy of mine has seen me through so many things that no one else has.”

But at sixteen years old, Rex had advanced kidney disease, wore diapers and was struggling to walk. Boschke and her husband reached out to friends who recommended MN Pets, Minnesota-based in-home euthanasia care.

What she found, Boschke says, was empathy and, most important, confirmation that she was making the best decision for Rex. “The memory we have of his passing was caring and dignified.”

Paradox of Difficult Yet Fulfilling Work

Quick believes that’s an essential part of her interaction with the pet owner, from the first call to the moment when the animal is gone. “My role is to come in, be calm, validate their decision and then to take really good care of their pet. To let them know that I have this under control and to provide that peaceful transition,” she explains.

A woman holding a small dog. Next Avenue, in-home euthanasia for pet, putting pet down at home
Heather Boschke and Rex

Dr. Karen Fine, a veterinarian and author of “The Other Family Doctor,” writes that when she began making house calls and offering in-home euthanasia services, she had to learn to be comfortable “around grief and intense emotions.” She adds, “I often felt like I didn’t belong in the sacred space between human and animal at such a pivotal moment.”

The number of vets who specialize in in-home euthanasia has grown over the last several decades, but overall, there is a shortage of practicing veterinarians. That means that the demand for in-home services like hospice and euthanasia has skyrocketed.

Kristi Lehman, a veterinary social worker for MN Pets, worries about the demands on the doctors and staff. “Our team is being pushed to their physical limits with how many families they can see and how many appointments they can drive to. So, there is a lot of discussion about our doctors’ quality of life.”

Complete Article ↪HERE↩!

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A Good Death: A Father, a Daughter, an End-of-Life Decision

— Jennifer O’Brien’s father broke his hip while contending with advanced congestive heart failure. He declined surgery to fix it, opting for a peaceful death instead. She supported him. The system did not.

By Jennifer A. O’Brien, MSOD

“Your dad declined the surgery to repair his hip fracture,” the anesthesiologist blurted incredulously over the phone. “Okay. I guess there’s no surgery then,” I responded. “Well, here, talk to the orthopedic surgeon,” he protested. I shrugged and said, “Okay” to no one as the anesthesiologist handed the phone to the orthopedic surgeon. The surgeon came on: “Your dad declined the surgery!” he exclaimed. “I heard,” I said. “I mean, your father said ‘No!’” I could visualize the surgeon’s wide eyes.

My dad was 85 years old with advanced congestive heart failure and severe lung disease. He had fallen two days before and sustained a neck of femur (NOF) fracture, also known as a hip fracture. I had been very involved in my dad’s healthcare for several years. His mind was sharp.

Several years before that, he had signed a do not resuscitate (DNR) order, a legal document saying that in the event of a cardiac arrest he did not want to be resuscitated, as well as a do not intubate (DNI) order, a legal document stating he did not want to be intubated in an emergent situation in which he was unable to breathe. Because “Do not ____” instructs clinicians to hold something back, these code status documents may also be referred to as an instruction to “allow natural death.”

The orthopedic surgeon was unconvinced, however, and pressed on. “He declined the surgery!” “Yes, I heard. My dad is crystal clear cognitively and entirely capable of making this decision, so I guess you can take the rest of the night off,” I told him. The surgeon chuckled and mumbled, “I wish.” At this point, he seemed to realize that while he may have to work into the night, it would not include operating on Jim O’Brien. We said our goodbyes and hung up.

About 30 minutes later, I called my dad and told him that while I would have supported his decision either way, I felt he had made a good choice.

My dad’s congestive heart failure had reached the final stage. He barely had the strength to stand and ambulate enough for trips to the bathroom. A sudden cardiac arrest was distinctly possible, if not likely. His advanced lung disease meant that for the last two years, his ability to breathe had been entirely dependent on a bilevel positive airway pressure, or “BiPAP,” ventilator.

By “entirely dependent,” I mean he could not exist, for even a few minutes, without a large face mask that covered his nose and mouth while forcing oxygen into his lungs. He could eat for a few minutes at a time but had to have a nasal cannula in order to breathe.

He was likely to die soon, and a major surgery now might well have ruined any chance he had of a peaceful, comfortable end of life.

The reactions of the two physicians who called made me realize that our case was unusual, both because of my dad’s decision against surgery and my unequivocal support of his decision. I got the impression most family members would have responded, “Oh no, let me talk to him.” They would have then called and said, “Daddy, if you don’t have this surgery you are going to die!”

But here’s the thing, he was going to die.

And while our deaths may not be as imminent as his was, so am I and so are you going to die. At the end of life comes death. At the end of a long life, with or without comorbidities, an NOF fracture may indeed be the onset of that final phase of life.

My late husband, a surgeon for 30-plus years and then a retrained, board-certified palliative medicine physician for another 10 years, named this final phase of life “Precious Time.”

He always said it with the emphasis on the first word, Precious Time. Precious Time is when death is likely, if not imminent. Precious Time is a type of time, the period of life that comes at the end. Not everyone has Precious Time; a sudden death does not allow for Precious Time.

Knowing that a loved one is into Precious Time allows for saying what needs to be said and doing what needs to be done, such as: I love yous, apologies, and reconciliations. Precious Time allows you to keep to yourself and not say what you might later regret. In recognizing that we are into Precious Time, we can minimize or eliminate the subsequent I-thought-we-had-more-time regrets and focus on the love, the honor, and the bereavement rather than a vague or acute befuddled remorse because we just didn’t want to talk about end of life.

Even with surgery to repair the hip fracture, there is a 27 percent 12-month mortality rate among 65-plus-year-olds. That is, there is a 27 percent chance that an otherwise healthy 65-year-old will not survive more than a year post NOF fracture. Add more years and comorbidities, and that mortality rate only increases. In other words, an NOF fracture, with or without surgery, is often the beginning of the end.

Another statistic is that 80 percent of people want to die at home rather than in a hospital or facility, “hooked up to a bunch of machines,” yet only about 20 percent do.

If we put these statistics together and add our just-fix-it culture, which has us operating now and asking questions later, I submit that a patient having to remain intubated postoperatively or never recovering is not the way we make the most of that Precious Time and not the way that most people want to spend their last days, weeks, or months.

And, having now lost every member of my family, including my husband, I can say from experience that when surviving loved ones are able to recognize and face that they are into Precious Time, they are likely to have an easier transition to grief and loss.

Fortunately for my father and me, my late husband taught me well. After my dad’s decision to forgo the surgery, I got in the car and drove across the country. In his hospital room, we talked about the fact that he was dying, and that the most comfortable way for that to happen was to convert his inpatient status to hospice, remove the BiPAP after a sedative, and he would sleep into an entirely natural death.

My dad and I spent our Precious Time together. We said our goodbyes as the medication took effect. I told him I loved him because I know that hearing is the last sense to go. I stayed with him until he took his last breath and then made the disposition arrangements we had discussed years prior. It was a beautiful, peaceful death at 85 years old, one week post NOF fracture.

In the three years since I had allowed the art journal I kept during the 22 months I cared for my husband, and about 18 months after his death, to be published as the book The Hospice Doctor’s Widow: A Journal, I have spoken on what I call the Triad of Certainty:

  1. At the end of life comes death.
  2. There are no do-overs in end of life.
  3. Changed forever, surviving loved ones remain and remember.

There is absolutely no one who will not die at the end of life — no one. Some of us don’t get married, don’t have children, but all of us die. And if we are lucky enough to love others, there is a good chance that one or more of them will die before us and their death will have an impact on us for the rest of our lives.

I am not saying that if you or your elder loved one sustains a NOF fracture, they should forgo the surgery. I am saying that protocol for an NOF fracture in a patient older than 65 should call for a pause rather than an unquestioned trip to the OR.

And that pause should include a consultation with a family practitioner, gerontologist, palliative care team, medical ethicist, social worker, end-of-life doula or whoever can facilitate a meaningful conversation, or more likely a series of conversations. These conversations should assist the patient and family in recognizing Precious Time, establishing the goals of care, and having a say in designing their end-of-life experience (even if it ends up being years hence).

Complete Article ↪HERE↩!

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Aggressive Medical Care Remains Common at Life’s End

— Most older cancer patients received invasive care in the last month of their lives, a new study finds. That may not be what they wanted.

By Paula Span

In July, Jennifer O’Brien got the phone call that adult children dread. Her 84-year-old father, who insisted on living alone in rural New Mexico, had broken his hip. The neighbor who found him on the floor after a fall had called an ambulance.

Ms. O’Brien is a health care administrator and consultant in Little Rock, Ark., and the widow of a palliative care doctor; she knew more than family members typically do about what lay ahead.

James O’Brien, a retired entrepreneur, was in poor health, with heart failure and advanced lung disease after decades of smoking. Because of a spinal injury, he needed a walker. He was so short of breath that, except for quick breaks during meals, he relied on a biPAP, a ventilator that required a tightfitting face mask.

He had standing do-not-resuscitate and do-not-intubate orders, Ms. O’Brien said. They had discussed his strong belief that “if his heart stopped, he would take that to mean that it was his time.”

Listening in on the phone while a hospital palliative care nurse-practitioner talked to her father about his options, Ms. O’Brien provided a blunt translation to an always blunt man: “Dad, your heart and lungs are done.”

The next day, he declined surgery to repair his hip. A startled anesthesiologist and an orthopedist called his daughter, apparently expecting her to talk her father into agreeing to the operation. She didn’t try.

“He was dying,” she said in an interview. “He’d either die comfortably or, with a big surgical incision, he’d die uncomfortably. Or die of something more complicated — potential infections, bowel obstructions, so many things that can happen.” Mortality rates after hip fractures, though improving, remain high.

Her father, who wasn’t cognitively impaired, had decided that surgery was “silly” and unnecessary. She supported his decision and contacted a local hospice.

Families often have to run interference in such scenarios, and a new study in JAMA Network Open helps explain why. The authors, most of them at Case Western Reserve University School of Medicine, analyzed five years of data from a cancer registry, nursing home assessments and Medicare claims to look at “aggressive end-of-life care” among 146,000 older patients with metastatic cancer.

They compared nursing home residents’ care in the last 30 days of their lives with the care for non-institutionalized patients living in communities, the lead author, Siran Koroukian, a health services researcher at Case Western Reserve, said.

The team looked for commonly used markers of aggressive care, including cancer treatment, repeated emergency room visits or hospitalizations, admission to an intensive care unit, lack of hospice enrollment until three days before death, and death in a hospital.

“In all probability, hospice should have been considered” for these patients, said Sara Douglas, a co-author and oncology researcher at the Case Western Reserve University School of Nursing.

Yet the majority of both groups — 58 percent of community dwellers and 64 percent of nursing home residents — received aggressive treatment in their final 30 days. A quarter underwent cancer treatment: surgery, radiation, chemotherapy

Although studies repeatedly show that most patients want to die at home, 25 percent of the community dwellers and almost 40 percent of the nursing home residents died in hospitals.

Hospice leaders, palliative care specialists, health care reformers and advocacy groups have worked for years to try to lower such numbers. “Patients who received this type of aggressive care experience more pain, actually die sooner, have a much poorer quality of life at the end. And their families experience more doubt and trauma,” Dr. Douglas said.

Because the researchers used large databases, the study can’t indicate whether some patients actually opted for continued treatment or hospitalization. Some treatments the authors deemed aggressive could instead have been palliative, intended to increase comfort, like radiation to shrink tumors that might impede breathing.

Still, “these are really sobering statistics,” said Douglas White, director of the Center for Ethics and Decision Making in Critical Illness at the University of Pittsburgh School of Medicine.

>A lot of factors contribute to invasive actions in patients’ final days and weeks. Some originate within the health care system itself. Doctors may be reluctant to initiate difficult conversations about what dying patients want, or be poorly trained in conducting them.

“The minute you have this conversation, people assume, ‘You’re giving up on me,’” Dr. Douglas said. Even having an advance directive and a Physician Order for Life-Sustaining Treatment, or P.O.L.S.T., doesn’t always ward off aggressive treatment.

But studies also show that even when crucial discussions take place, patients and surrogate decision-makers frequently misinterpret them. “Families often leave these conversations with much more optimistic expectations than their doctors meant to convey,” Dr. White said.

His research has documented the effects of optimism bias. Surrogates understand positive prognoses more accurately than negative ones. They may grasp that most people in this situation will die, but insist that their particular loved one is different, fiercer, stronger. Misplaced optimism then leads to more aggressive treatment.

Sometimes, family demands prevail even over the patient’s own wishes. Jennifer Ballentine, chief executive of the Coalition for Compassionate Care of California, knew that one of her relatives didn’t want high-intensity care if he became terminally ill. But when he developed aggressive prostate cancer at 79, his wife insisted that he pursue treatment.

“He refused. He kept saying he just wanted to be in hospice,” Ms. Ballentine recalled. “She kept saying, ‘Absolutely not.’ ” He capitulated until, after three exhausting months of chemotherapy with several hospital stays, he died in hospice care.

The health care system could improve end-of-life care. When palliative care is introduced soon after a diagnosis, patients have a better quality of life and less depression, a study of people with metastatic lung cancer found. Though they were less likely to undergo aggressive treatment, they survived longer.

Palliative care doctors, skilled in discussions of serious illness, are scarce in some parts of the country, however, and in outpatient practices.

Adopting a so-called concurrent care approach to hospice might also ease these transitions. The Medicare hospice benefit requires patients to forgo treatment for their terminal illness; hospice through the Veterans Health Administration system, with more liberal criteria, allows patients to receive both treatment and hospice.

>A recent study of veterans with end-stage kidney disease, who were likely to die within days if forced to discontinue dialysis, shows the impact of concurrent care. Palliative dialysis — administered less often or for shorter periods than the standard regimen — can help control symptoms like shortness of breath.

“Being required to stop a treatment that is helping your quality of life can mean that you won’t sign up for hospice,” said the lead author, Melissa Wachterman, a palliative care doctor at Harvard Medical School.

In her study, veterans who discontinued dialysis when they enrolled in hospice received just four days of care before they died, so short a time that even expert hospices would struggle to provide full support. Those receiving concurrent dialysis as hospice patients, almost all through the V.A., averaged 43 days of hospice care.

Medicare has authorized pilot studies of concurrent care, but for now, patients and families must often seize the reins to make their end-of-life wishes known and determine how best to fulfill them.

>Some patients want every possible action taken to extend their lives, even briefly. For those who feel otherwise (former President Jimmy Carter, for instance), asking about palliative care and hospice can open the door to straightforward discussions.< James O’Brien was among the latter. His daughter drove 12 hours, from Little Rock to Santa Fe, to spend a quiet day with him. “We had some good time together,” she said. “We talked about what was going to happen.” She was there as the hospice team provided medication to keep him comfortable and withdrew the biPAP. “It was very peaceful,” she said. “I told him I loved him. I knew he could hear me. I stayed with him until he took his last breath.” Complete Article ↪HERE↩!

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When death becomes you

— My journey towards becoming a death doula

Dana Purdom taps into her deep intuition to find her calling as a death doula.

By

When I was as young as four years old, my mother would send me to my grandparents’ home to stay during the summer months. I was this little girl, neatly coiffed, dressed impeccably, and placed on a plane to fly across many states to Leakesville, Mississippi. I was a quiet and reserved child, and shy, which, I believe, others perceived as timidity and an inability to fit in. But I knew this was not true.

I was deeply intuitive, sensing, empathetic, and feeling all things around me. I wasn’t quiet. I was observant. I wasn’t shy. I was curiously aware. I wasn’t timid or unable to blend in. I was simply different. And this made others uncomfortable in ways I couldn’t name or remedy at such a tender age. So I shrank into myself and sat quietly as I watched others – aunts and uncles, cousins, friends – live their lives out loud. The only people I felt understood and knew me were my grandparents. They had a way of communicating, seeing and loving me in ways I can only attribute to them also being intuitive.

During those summers. I spent hours wandering in the fields and deep woods, exploring and communing with nature. I heard the sounds of animals moving from one place to another, giving instructions of where they were headed next. I would listen to the trees, the leaves and the brush as they sang, sending messages to one another of what season it was, and whether or not to bend and stretch when the breath of God blew on them.

And though these times were glorious, expansive, and faith-forming for me – instilling a sense of other-worldly trust and peace – there were moments of fear of the unknown, of otherworldly happenings that I couldn’t explain.

At times, asleep in the back room of my grandparent’s home, I would be overcome by a weighted feeling, making it difficult to breathe. Subconsciously, I was taken to a deep, dark, unknown place. No matter how hard I fought – to get away, to breathe, to scream – it was pointless, as the grip on me was too great to overcome.

“The witch was riding you,” a family member told me.

Whenever this happened, it would physically feel as if I was experiencing death, or the dying process. First: asphyxiation, immobility and panic would set it in because somehow, even in this state of paralysis, I knew death was imminent. And then, an unwavering calm, a gentle peace, a release or surrender to the unknown would take over, shortly after the “witch riding my back” dismounted and the paralysis ended.

These moments are what I understand to be my induction into the mystical world of death and dying. As these moments continued to happen over the years while visiting my grandparents, I began to intimately connect with the peaceful surrender of death. It no longer frightened me, but instead, drew me closer. I wanted to know more about what I was experiencing and the visions I saw. I wanted to know more about death and its transcendental relation to the beyond.

Early on, I couldn’t comprehend my curiosity about death or why these experiences happened to me. But I’ve come to understand this mystical phenomenon as a gift, a blessing and a means to serve others by becoming a death doula.

A culturally spiritual call

We live in a death-denying culture. But because of my childhood, the draw of the witch that was riding my back, and my growing intimacy with death, my curiosity grew into a deep passion: what happens, I wondered, when a physical body is no longer present in the natural world and has returned to its original form as a spirit, transitioning into its next phase of life?

For me, death is never ending; it is a transition from one life-form to the next. I am a soul cultivator, one who seeks to hear the heart of others, beyond the words they speak, desiring to reflect back to them the love, care, and peace they long for in their lives. If they never received this type of care in life, if I can give that to them in death, I will have lived fully into my call of “doing the work my soul must have,” as theologian Katie Geneva Cannon challenges each of us to do.

For me, death is never ending; it is a transition from one life-form to the next.

Like a midwife who assists in the process of birthing, a death doula “guides a person who is transitioning to death and their loved ones through the dying process,” according to the International End-of-Life Doula Association. Death doulas have existed as long as death itself; culturally, however, Black death doulas have specifically answered the spiritual call between Black people and their tormented, historical relationship to death and dying. This became more pronounced during the COVID-19 pandemic and the growth of social movements focusing on Black and brown lives — and deaths.

“The inequities in the way we live and die could not have become more apparent during this time, coupling both the pandemic and social movements we’ve witnessed in the last two years,” according to grief consultant Alica Forneret in a story on refinery29.com. Forneret also is the founder of PAUSE, which creates culturally specific spaces that provide end-of-life resources and grief support.

Nikki Giovanni once said, “death is a slave’s freedom.” Black people’s history with colonized culture has demanded that the care and personal needs of its own community regarding death and dying be met in ways that greater society doesn’t recognize.

“God’s salvation is a liberating event,” James Cone wrote in his book, The Cross and the Lynching Tree, “in the lives of all who are struggling for survival and dignity in a world bent on denying their humanity.”

New rhetorics of lynching and continual perpetuation of Black tropes dehumanize and distort one’s humanity in death. These are primary reasons why Black culture, by restoring power and dignity to the dead, has taken personal agency in God’s vision for humanity. Black funerals, therefore, are celebrations that honor the life that was lived on this side of eternity, and they rejoice in the transition into the next.

And this was what our ancestors did in remote, secret places: they practiced sacred religious traditions because they were prohibited from performing funerals or any traditions that commemorated the dead. Black funerals were once one of the only spaces not permeated with Whiteness, where we could live into our traditions in our own sacred ways.

And so, more and more Black people, by becoming or by employing death doulas, are seeking to protect the knowledge that not only Black lives matter, but also Black deaths.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator, where they will walk around heaven all day, as the song goes. Funerals, for instance, are called “homegoing services,” and are outpourings of both joy and grief. Helping the dying do so in dignity while remembering and honoring ancestral traditions, and ensuring that the family of the dying person is nurtured, became the impetus that moved me in the direction of becoming a death doula.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator.

While there are currently no licensure requirements to become a death doula, organizations exist to provide death doula certification and training. Going With Grace (goingwithgrace.com) offers death doula/end-of-life training “steeped in ancient wisdom traditions adapted to modern times” and prepares individuals to take the National End-of-Life Doula (NEDA) proficiency assessment. Passing this curriculum exam, according to the NEDA website, earns the doulas a badge that assures them and the families they assist that the doula has competencies and knowledge around, among other things, spirituality, the dying process, non-medical care and comfort, and grief, and that their understanding of these areas aligns with those of others in the field.

Being a death doula differs from chaplaincy and hospice care. While death doulas do not provide medical care, they do collaborate with hospice programs, bridging the gaps and strengthening the relationships between medical and non-medical support, as noted on cremationassistance.org. Hospice care is regulated by Medicare rules, which limits caregivers’ interactions with patients and families. Death doulas bridge this gap by showing up in the following ways: grief support, advance health care planning, end of life planning, practical training for family caregivers, funeral/memorial planning assistance, needed relief for family caregivers, companionship to patients, vigil presence for actively dying patients and more, as every death doula is different and has their own specialties they provide.

And while chaplains also do this work, there are differences between chaplaincy and being a death doula: education, training, certification, and ways of making meaning of a person’s experience of sickness, death, and dying. Chaplaincy is not only shaped by one’s own religious tradition but also the extensive religious and philosophical studies completed during graduate school. Death doulas have more flexibility in their practice. Doulas are able to serve as many or as few clients as they wish to serve at a time, whereas chaplains are limited to serving those within the institutions where they are employed. And death doulas are independent contractors charging an hourly rate or setting a flat fee, but services are not covered by insurance, Medicare or Medicaid.

A death doula can also help relieve the burden of improper or confusing end-of-life planning, and support family members who are responsible for completing their loved one’s affairs. You can find a death doula by checking registries that are available in individual states.

Death should not be a taboo topic

We live in a death-denying culture, where the discourse surrounding death is taboo, and we don’t want to accept that we live in a finite world. We shun people who talk about death, especially those people who may be living terminal lives. We do this as a means of self-preservation, not wanting to be exposed as being vulnerable or appearing weak for expressing emotion. I believe that if we talk about death and dying more, in constructive and life-giving ways, and with the support of a person like a death doula, the topic will become less taboo.

I recognize I have a unique perspective concerning death and dying. Death is inevitable, and neither humans, nor any of creation, were meant to live forever. I believe we are spiritual beings, having a human experience. And as I was writing this article, the song “Take Me to the Water (to be baptized)” by Nina Simone dropped in my spirit.

In death, we are reminded of our ‘maternal baptism’: dying to the spiritual realm from which we came and, born to life in the maternal waters of the womb, becoming the physical beings we were created to be. In baptism, we see the death and resurrection of Christ as well as our own. Though, in baptism, we are “not actually dead, placed in the tomb, and brought back to life …” the sacrament re-members us to Christ’s passion, giving us new life in Christ (Cyril of Jerusalem).

If we allow this consideration of baptismal grace being the death and life of a soul, then death becomes a return to the waters that once birthed us. No longer physically present in the earthly realm, and yet, still present as spirit.

Like other injustices, this “holy disruption” of a pandemic “has magnified the problems Black people face in the death and dying space,” says Alua Arthur of Going With Grace.

By dispelling myths regarding death, through curating soft landing spaces for mind shifts to occur, while holistically supporting those in the midst of experiencing death, I aim to become a change-agent in the death doula industry — re-writing the narrative of what Black death is and how beautifully sacred the dying process can be.

“When death comes to find you, may it find you alive.” — African Proverb

Complete Article ↪HERE↩!

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End-of-life planning is a blessing

By John Lurain

In my career as a physician, I witnessed, firsthand, both good and bad end-of-life decision-making by patients and their families. Those who had prepared for the inevitability of death by advance planning and had hope for their life’s meaning beyond the pain and distress of death were able to better accept and handle the realities of dying.

On the other hand, the dying process was often chaotic and resulted in prolonged suffering for those who had not embraced the joy of their lives and had not undertaken discussions or steps to ensure their dying wishes would be carried out.

When my wife, Nell, was diagnosed with incurable, advanced cancer at age 74 in 2021, we were blessed that we had discussed our dying wishes with each other and our daughters and had made plans for the transition to end-of-life well before Nell’s illness. Nell had also found a spiritual peace and meaning in her life through her family, her career as a scientist, and as a teacher, which provided comfort in her final days.

Steps we took to facilitate end-of-life decisions:

1) Moving into an apartment after our retirement, which made it much easier to care for Nell and avoided the hassle of disposing of our house after her death

2) Setting up estate-planning documents, including a healthcare power of attorney if we were unable to serve as our own advocates

3) Discussing with family our priorities for quality of life

As a result of these advance planning measures, our entire family was in agreement about Nell’s end-of-life care. We engaged hospice and home care services early, allowing us to provide comfort care in our apartment without need for hospitalization. Nell passed away peacefully on Aug. 31, 2021. I miss her every day, but I receive solace knowing that we provided Nell with the type of dying experience she wished.

Compassion & Choices, the national nonprofit organization dedicated to end-of-life choices, provides free, comprehensive planning tools available online at: candc.org/endoflifeplanning. I encourage everyone to take advantage of this valuable resource.

Complete Article ↪HERE↩!

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What being a hospice volunteer taught me about death and life

— When Anna Tims volunteered at a hospice, she learned, by helping patients in their final days, not to fear illness and death. Here, she writes movingly on her experience – and explains why dying matters

‘I live in wonder at the power of a held hand.’

By

My introduction to death came in a traffic jam. I turned on the radio and heard a woman describe her father’s final days in a hospice. His end, she said, was a strangely warming memory because of the hospice volunteers who entered the pain of strangers and held their hands as they faced the unknown. In her grief, she explained, she’d encountered humanity at its best. I forgot my frustration at the static traffic as I listened. The prospect of a missed train and crowding deadlines was unimportant, seen through the lens of loss. It was an instant realisation that I wanted to be where life matters most, which is when it is ending. I wanted to be one of those hospice volunteers.

My experience of death had been at a distance. I’d lost grandparents and cats. As a clergyman’s wife, I’d attended funerals of parishioners, tidied tombstones in the churchyard and contemplated my mortality from the pews during Lent. I had never seen a body. I’m frightened of the raw grief of others and I’m squeamish about blood. My volunteering roles have always been with children. I’m used to beginnings, not endings.

I ignored my deadlines that morning. Instead, I Googled hospices. A hospice in the next county was seeking a volunteer to write the life stories of patients in its day centre. This felt reassuringly familiar ground. I applied. Within a month, I was listening to strangers recounting their loves and their losses. Their trust took my breath away. So did the intimacy of hearing memories that had never been shared and regrets that had never been expressed.

Each interview would start the same way: with an apology. The patients apologised for having led boring lives that were not worth recording. Then, as they rewound the years, I realised they were discovering for the first time that they were a pivotal part of a story; that they had made an imprint on the world. A life recounted can make sense in a way that life lived does not. I heard the anguish of a Second World War pilot haunted by the bombs he’d dropped on Germany. I recorded the childhood of a German woman who had grown up beneath those bombs. An ex-convict confided his years of alcohol addiction in the hope that his story of redemption might be shared to help others. I accompanied octogenarians through the hopes of their youth to the resignation of their ending, and, when each story was printed and handed over, those strangers felt almost as familiar to me as family.

Writer Anna Tims in a green tunic and jeans at the Cottage Hospice in East Sussex.
‘I saw people differently’: writer Anna Tims volunteering at the Cottage Hospice in East Sussex.

People were admitted to the day centre if they had less than two years to live. It was a cheerful space full of light, cake and chatter. There was time for friendships to form and flourish. Death felt remote. Occasionally I’d be summoned to the ward of rooms where patients were in their final weeks. It felt a hallowed place. Mysteries beyond my comprehension were unfolding behind the closed doors. Ashamed of my own health, I hovered at bedsides and marvelled as people wrested their remaining shreds of energy to share their lives. One woman could barely speak and her memories were scrambled by a brain tumour. I suggested she rest. “Let’s crack on!” she whispered. Her memoir was for her young children. Through her story, she hoped to live on. We only met the once. She died before she could get past her childhood, but that childhood lives with me as vividly as my own.

I began to see life differently. Chores and routines I’d thought tedious have a sanctity on a deathbed. Everything I took for granted – the school run, the weekly shop, an unexpected soaking in a rainstorm – seemed a gift to those no longer able to experience it. The details the patients recalled of their past were so small, but so precious. I saw people differently, too. Instead of anonymous faces of strangers in the street, I saw protagonists of untold stories; the quiet heroism of ordinary life.

The day centre closed temporarily when Covid struck and most volunteers were stood down. I agonised over all the tales that would never be told. In spring 2021, an SOS came from the Cottage Hospice in East Sussex. They needed volunteers to work shifts with nursing staff. This was not familiar ground; it combined my fears of wounds and body fluids and unleashed emotion. I was uncertain that I could cope with the death of people I had tended. Then I realised that I will one day have to cope with the death of people I have loved. Perhaps to immerse yourself fully in life, you have to confront mortality. So, in fear, I signed up.

The Cottage Hospice is offered free to families and paid for by fundraising. It was established by Hospice in the Weald in 2019 to be a home-from-home rather than a hospital, for those who don’t want to be parted by visiting hours and ward rules. Relatives move in with the patients and care for them with the support, if they want it, of nursing staff and visiting doctors. There are en suite bedrooms with sofas and private verandas, a family kitchen stocked with food, guest rooms for visitors or carers who need a break and stylish lounge areas. Patients can personalise their rooms, which overlook hills and meadows, and host guests in a free café. Some of them bring their pets. The idea is to remove some of the pressure on families so they can make the most of the time they have left.

“Celebrating life, dignifying death” is the philosophy. It feels more like a boutique hotel, and what struck me the first time I entered, was the pervading peace. Not silence, although there is a great quiet, but a tranquillity. It baffled me. Anguish beyond my imagining is endured in those rooms. Some patients were leading active lives until a recent diagnosis and arrive in shock. Some have suffered long illness and are resigned. Family caregivers know that when they leave, they will go home alone.

Over the months, I think I’ve started to understand. The cottage is a pause, a bubble, and in that pause families, in coming to terms with death, can make sense of their life together before the agonising step into the future.

In the outside world, death is hidden, unmentionable. In the hospice, it’s what unites all those there, and, in being acknowledged, it is dignified. It can be a relief for relatives to talk openly about their fears and grief. It is an honour for staff and volunteers to be there to listen. “I feel this place has wrapped its arms round me,” a young wife told me after terrifying weeks of waiting in hospitals.

Instead of collecting memories, I found myself bathing patients, feeding them, talking to families and, occasionally, helping the staff performing last offices for those who had died. To my surprise, I found death in the abstract more frightening than death personified in individuals who can squeeze your hand and share a joke and who, while losing their life, radiate their humanity.

It takes a special grace to accept dependence. In the outside world, we feel humbled by the status and success of others. In a hospice, I’m humbled by figures in the beds, trustingly accepting the ministrations of a stranger and whispering, even when barely conscious, a thank you. Dignity is not what I thought it was. I was hot with embarrassment when I washed my first patient, until I saw she was smiling at me. In her acceptance, she had dignity. In my fumbling confusion, I did not.

Drugs manage the physical pain and some of the mental torment. They can’t remove the dread of loss and the fear of the unknown, but most of those I met have arrived at the same acceptance. Dignity of spirit overcomes the indignity of helplessness. Small gestures – a wiped face, a plumped pillow – feel like tributes. They are all I can offer as they face what I can’t fathom.

My fears were dissolved by the calm of the nursing assistants. Many are young, but have learned more of life in that building than I have done in twice their years. Formal staging posts to friendship are bypassed and staff, volunteers and families are plunged straight into a relational deep end. Some patients and carers want the release of a laugh. Some want to confess fears, share memories or talk of anything but sickness. Some require silence. You have to try to intuit what they need without blundering. I live in terror of an ill-judged word and in wonder at the power of a held hand.

It’s in the kitchen that the hospice’s vision is enacted most powerfully. Caregivers from different families mingle at the table, preparing meals or making tea. We may never have met before, but sometimes the chatter is so lively, the vibe so domestic, that I feel we’re in a house share. A patient’s husband reminded me how to use the microwave each time I forgot and we joked at my culinary incompetence. A pair of young siblings concocted a banquet for their dying father. They’d bought his favourite foods and a bottle of champagne. They decorated the trays with flowers and had hired a band he’d admired. He’d loved to party, they said.

At quieter times, that intimate domestic setting is where relatives let their guard down, confide their struggles and invite a hug. There’s a connectedness in shared crisis that can make you feel more human. Life seems more real sometimes inside the hospice than it does back in the world of deadlines and small talk.

You’re supposed to leave their pain at the door when you clock off from a shift, but some people’s pain comes home with you. The hard part is the absences when you clock on a week later. Families you grew close to are suddenly not there any more and you never got to say goodbye.

Six months after I’d started at the Cottage Hospice, my father was taken ill. He died 10 days later. His sickness was sudden, but the hospice had prepared me. I dread loss more keenly, perhaps, than I ever did, having witnessed families watch their lives fall apart, but death itself has seemed less frightening since I confronted it there.

It was my encounters with patients and relatives that enabled me to accept my father’s diagnosis without terror and to face his body on the bed. My hospice shifts haven’t made my grief any less, but they’ve made it seem less isolating. Loss is the one certainty we all face, but, in the outside world, it tends to be borne out of sight and earshot. Accompanying relatives on part of that agonising journey has helped me come to terms with my own emotions and to root my personal bereavement in the wider human story.

Hospice volunteering has changed my understanding of life and death. There are no happy endings in the conventional sense. The patients won’t get better. One has to accept one can’t save them. There is no counsel or comfort one can offer strangers facing the inevitable. That’s been hard to learn. I like to fix things; I’m prone to impose advice. I’m discovering that it’s essential to recognise that we can’t control life in the way we assume. The existence we take for granted is as frail as dreams and it can dissolve in a heartbeat.

Sharing with families the most private moments at a deathbed is an inexpressible privilege. Social barriers break down. In that limbo, away from daily schedules, relationships are prioritised.

In my head these days is a procession of faces of those I briefly knew. So many of them had craved more time. Now, when a new day breaks, I try to see it from their perspective and cherish the humdrum as a gift. And when I finish a hospice shift, I want to take back into the outside world that sense of life stripped back to its essentials, where what ultimately matters is love.

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Voluntary stopping eating and drinking

By Martha McClellan

Sometimes conversations with other elders are about how we want our deaths to be. We want them gentle, peaceful, surrounded by loved ones (or not). Many friends of mine have died recently. One had a beautiful and loving end surrounded by family. Another, a sudden heart attack at home with no warning. One, in a hospital with a long, drawn out, excruciating yet courageous, few weeks. Another, from taking his own life – he was ready.

We have accidents, illnesses and our bodies just wear out.

A 2018 Stanford University School of Medicine study found that 80% of us prefer to die at home. However, about three-quarters of older Americans die in nursing homes or hospitals. Leading causes of death for people over age 65 are: 1) heart disease, 2) cancer, and 3) lower respiratory disease. We can see that the hospital scenario is obvious for many of us.

Another choice we have has recently come to my attention. If we get to a place that is unacceptable to us as far as pain, quality of life issues and never-ending suffering, there is something called Voluntary Stopping Eating and Drinking – VSED. It is a way to end suffering in a fairly gentle, peaceful and predictable way. Animals sometimes wander off and die this way.

This choice has been used by terminally ill people throughout modern history. Many on the verge of death come naturally to this process – they no longer want to eat, although they do desire water. One of my friends died recently in this manner and it was all just so instinctive and spontaneous.

I’ve just read “The VSED Handbook,” by Kate Christie. Her mother had early onset Alzheimer’s and was determined not to end up in a memory care facility. They worked together while she was still lucid, along with others in her family, a care team headed by a death doula, a doctor and a lawyer to enable her to go through this process smoothly, and avoid the horrors of late-stage Alzheimer’s.

This book offers an actionable plan emphasizing the importance of planning, palliative care and a network of support. It is a fascinating account of how one person stayed out of a memory care center. Christie also describes what to expect from each stage of the VSED process, and the highlights and challenges, and unexpected gifts of accompanying her dying mother on her final journey.

Some acquaintances have mentioned wanting “something in the closet” in case they need it eventually, depending on how their later years go. VSED seems to be it. While Medical Aid in Dying is the law in Colorado if you have a six-month fatal diagnosis, VSED is not authorized by state statue or by court ruling. But that doesn’t mean it’s illegal.

VSED is legal nationwide. The U.S. Supreme Court, in Cruzan v. Missouri, 1990, said a “competent person would have the right to refuse lifesaving hydration and nutrition.” Therefore, VSED is legal for a person nearing the end of life who has the mental capacity to make their own medical decisions. This shows how important it is to have Advance Directives, and to make them early while we’re competent, so in case something happens, we’re set!

This differs from SED (stopping eating or drinking), which is governed by different laws that authorize withdrawal by health care professionals of fluids and nutrition, authorized by the patient’s advance directives. (CompassionandChoices.org)

It may be more difficult for people who are not terminally ill to receive health care support through the VSED process. However, Hospice assures me that they would support someone midway through the dying process or if they are comatose, with a doctor’s order. They have always been on the compassionate side of the dying and have assisted with many cases similar to this.

More information about all this can be found at CompassionandChoices.org and vsedresources.com.

Shouldn’t elders who feel they’ve lived a completed life have this choice, no matter what the circumstance? And with no criticism, or shame? It’s about dying the same as living – making conscious decisions that work for us. And, having a death with some grace and dignity.

Complete Article ↪HERE↩!