We Deserve More Than a ‘Good Death’

The case for demanding end-of-life care that meets our needs

By Amy Berman

If you are facing serious illness today or want to prepare for your own, or a loved one’s, illness in the future, you can tell your nurse, doctor and family that you want to talk about your wishes and what’s important to you. As we age, what matters most to us about our health care choices should become more important, not less, especially as we near the end of life. It’s important not just for us, but for those we leave behind.

Let me tell you a story to show you what I mean.

At 68, a woman we’ll call “Carmen” thought she was healthy — until she suffered a stroke and then a heart attack. Her husband, Eddie, a house painter, worried. How could they get Carmen the care she needed? How would they pay for it? Carmen told Eddie she wanted to avoid the hospital as much as possible, go to church and not be a burden to him.

Carmen represents the type of patient who nurses, doctors, social workers and other health care providers see every day. Yet, health care teams often serve people like her poorly. As a nurse, I’ve seen many people needlessly returning to the hospital over and over or spending their final days in an intensive care unit hooked up to machines they never wanted. But sometimes, when the right conversations lead to the right actions at the right time, the story has a better ending.

The Proactivity of Palliative Care

Fortunately for Carmen, her neighborhood community had a program that put together everything a person with a serious illness would need — proactively. This program drew together medical and nursing care with social work services to support the needs of the family grappling with serious illness. Carmen was relieved to learn that the program covered treatments to manage her pain and symptoms and also coordinated her care with her health care team. This is called palliative care.

The palliative care Carmen received was different than hospice care (available to people expected to live six months or fewer). Palliative care provides pain and symptom management until a cure is reached, or chronic condition management until death. Palliative care was an extra layer of support while Carmen got her other treatment.

Not only do people generally feel better with palliative care, they also live longer. Research shows that palliative care improves patient and family satisfaction, increases time spent at home and reduces the amount of time people spend in hospitals.

The World Health Organization even recognizes palliative care as “fundamental to improving the quality of life, well-being, comfort and human dignity for individuals” and has called for it to be integrated as an essential element of the serious illness care we receive.

When Carmen took a turn for the worse and required hospice, her care team listened to what mattered to her and helped her plan accordingly. When it became clear that she was getting worse, the team helped her remain at home and comfortable, just as she wanted. She had time to be with her closest friends, and died with her family around her.

And that’s the point. We deserve to live out our lives on our own terms.

What Matters to You?

The John A. Hartford Foundation is committed to helping ensure that members of the public understand they have a key voice in how care is chosen and delivered. The Foundation supports several groups that provide helpful resources for patients, families and clinicians. This includes Care.Lab, a collective of leading national experts who helped develop scenarios like Carmen’s to illustrate the possibilities; The Conversation Project, which offers free starter kits to help define your wishes and advance directive guidance. If you want to learn more about palliative care in your community, visit getpalliativecare.org.

Improving care for people living with serious illness requires palliative care and — when needed — hospice services.

People should receive the care they want and know how to avoid the care they don’t want. Families should feel supported and better equipped to help their loved ones. Clinicians should know their patients are receiving care that aligns with the patient’s goals. Health care systems benefit from the person-centered care their clinicians deliver. This is the care we should all demand.

Complete Article HERE!

Rethinking Death with Natural Burial Practices

By Nina Müller

Death is our universal condition, and every culture has ways to deal with bereavement and loved ones’ remains. While these rites vary greatly, it is becoming apparent that many of the world’s traditional burial practices are unsustainable in the face of overpopulation and climate change. All the funerals I have attended have their roots in Christianity, and require that the deceased either be cremated, or buried in a coffin and vault. In America alone, it is estimated that every year traditional burials result in the deposit of: “20 million feet of wood, 4.3 million gallons of embalming fluids, 1.6 million tons of reinforced concrete, 17,000 tons of copper and bronze, and 64,500 tons of steel being.” (The New York Times)

It naturally follows that the toxins and heavy-duty materials used to embalm, preserve and contain bodies has a detrimental effect on the environment. While cremation was thought to be an ecologically sound alternative, the procedure actually causes high levels of carbon dioxide to be released into the atmosphere. In light of the somber findings of the UN Intergovernmental Panel on Climate Change’s (IPCC) report on climate change, it is clear that drastic steps are needed to prevent the environmental collapse. It is not only what we do during our lifetime that can affect change: innovative eco-burials are proving that we can reduce our carbon footprint even in death. 

Funeral rituals vary greatly across the globe, from the New Orleans’ Jazz Funeral, which blends West African, French, and African-American traditions, to the Turning of the Bones in Madagascar, where relatives commemorate the diseased by dancing with their bodies. My personal favorite is the sky burial, a tradition that is prevalent in Tibet, amongst other cultures, and which involves depositing bodies at high elevations so that they may be consumed by vultures. Having attended only a handful of funerals in my lifetime—all of which were in Western cultures and did not include an open casket—the notion of seeing a dead body is completely foreign to me, not to mention the inevitable scavenging that follows a sky burial.

However gruesome the ritual may appear to the outsider, it stems from real environmental and spiritual practicalities. Indeed, in many parts of Tibet and Qinghai, a lack of timber and fuel made cremation impossible, just as the sturdy and rocky grounds prevented earth burials. Furthermore, the ritual is considered to be an act of charity on the part of the deceased, who makes a final offering to other sentient beings. 

The notions of compassion and impermanence are essential to Vajrayana Buddhism, and sky burials are a reflection of these virtues. In fact, charnel grounds are also cited in the Early Buddhist canon; in the Satipatthana Sutta, the Buddha encourages his followers to reflect on impermanence by observing dead bodies undergo various stages of decomposition. Unfortunately, with the number of vultures diminishing every year, sky burials are becoming somewhat of a rarity.

With overpopulation rising, funeral practices around the world are facing similar difficulties. In Korea, for example, the lack of burial space has forced many families to dig up the remains of their ancestors and have them cremated. Add to this the imminent threat of climate change, and it is no wonder that funeral practices around the world have to adapt.

Vulture on the Tibetan plateau.

Fortunately, a number of people and organizations are coming up with innovative solutions to this problem. There are now several companies in Korea who specialize in transforming people’s cremated remains into colorful beads (this provides an alternative to the urn, which can appear eerie to some). Others have opted to have their remains turned into reef balls that are then placed in the ocean, creating a natural habitat for marine life. 

For those who want to bypass cremation because of its negative effects on the atmosphere, there are now a number of green alternatives that promote the natural decomposition of bodies: allowing remains to seep directly into the earth and provide sustenance for the surrounding flora and fauna.

In order to be environmentally friendly, biodegradable materials are used to make cloths, shrouds and caskets; and artificial markers such as tombstones are replaced by naturally occurring flora, or a GPS system. According to the non-profit organization The Green Burial Council, going green also has its financial benefits, since eco-burials can significantly lower the cost of posthumous arrangements. For example, prices for a complete natural burial at Honey Creek Woodlands (Georgia) start at US$3,400 —approximately half the cost of a typical modern funeral. 

For better or for worse, concerns over the future of our planet are forcing us to make changes to age-old traditions. It is perhaps for this reason that the Catholic Church, and many funeral industries, have embraced eco-burials; and in 2015, the Funeral and Memorial Information Council found that 64 percent of adults aged 40 and up would consider having a green burial. Linda Holzbaur, a member of the Greensprings Natural Cemetery board, explains that when she buried her two family members, everyone “chipped in” with digging the grave, making it a very personal experience for all involved. Artist Jae Rhim Lee, who devised a burial suit made of flesh-eating mushrooms, encourages the West to face death head on and address “the actual process and acceptance of decomposition.” (TedBlog)

In this way, natural burials not only help to protect our planet; they also provide us with an opportunity to rethink death and to incorporate lessons of compassion, interconnectedness, and impermanence into our rituals.

Complete Article HERE!

A Gentler Death

The one thing everyone shares in life is that some day it will end. Pāhiki Eco-Caskets wants to shape a final resting place that is environmentally friendly for all.

By Matthew Dekneef

Like most people, Cortney Gusick never considered the prospect of purchasing a casket until she needed to select one for a family member. Eight years ago, her dad died from pancreatic cancer, and she was thrust into the death-care industry as a consumer. The most difficult part of making the funeral arrangements was finding the right casket. Gusick wanted something that reflected who her father was in his very full life: a Hawai‘i boy who cared about the environment and carried those values with him to Oregon, where he raised his three daughters. Ultimately, Gusick settled on a simple pine box from a small-scale, non-commercial business. “His body was going to biodegrade as it was designed to do, and it would provide some kind of nourishment for the earth,” Gusick says. She reasoned that the receptacle in which he was buried should do the same.

Common caskets are not earth-friendly. Nearly every model found in funeral home catalogs is manufactured with metal, paint, silicone, synthetic polyester fabric, and other non-biodegradable materials. That greener options aren’t readily available in the modern burial industry concerns Gusick, especially in a place like Hawaiʻi, where a reverance for one’s natural surroundings is part of daily life. After her dad’s death, she saw the metaphorical light at the end of the tunnel, and she came out the other side a casket builder. “This is what I want to offer for people,” she says. “For someone’s eco-legacy to be, ‘I did right by the earth.’”

Last year, Gusick started Pāhiki Eco-Caskets, a low-impact, environmentally sound casket manufacturer, in the backyard of her Mānoa Valley home. The venture was a 180-degree pivot from her ongoing job at the Silicone Valley-based company UserTesting as a test engineer in the amorphous world of software and mobile applications. “I had zero background,” Gusick admits. But the 37-year-old felt equipped for the intensely tactile field she was about to enter. “My dad taught his girls how to do everything, how to change our own tires, acid-strip a deck, lacquer the house’s wainscotings,” she says. She binged on online tutorials to gain a baseline knowledge of woodworking. “Between Dad and YouTube,” she says, “I felt like, ‘I got this.’”

Three months later, she teamed up with Logan Baggett, a friend she met in Oregon who had previously worked in Hawaiʻi’s solar industry, to help finesse Pāhiki’s offerings of 4- to 6-foot-long, 100 percent biodegradable caskets crafted from untreated, Hawaiʻi-grown wood. Soon after, the company attracted five investors and received a business loan from the Office of Hawaiian Affairs, which they used to buy hardwoods and build out inventory.

In Hawaiian, the word pāhiki means “to pass quietly, go lightly, touch gently,” a definition the duo strives to embody. Their caskets are made with reclaimed local albizia, monkeypod, mango, avocado, and Norfolk pine provided by Waimānalo Wood, a lumber mill that also houses their workshop. Pāhiki caskets range in price from $1,800 to $2,200 (less than the $2,400 median cost of a standard metal casket). In the circumstance that someone needs a keiki casket, Pāhiki provides it for a dollar.

Gusick considers every dimension of her industry. We’re trapped in a “death-denial culture,” especially in the United States, she says, which is obsessed with indefinitely preserving the deceased in ways that only benefit the living. For Gusick, the more grandiose style of caskets, which can cost upwards of $15,000, are more for the living than the dead. Those caskets “resemble pieces of high-end furniture that belong in this world, that belong in a house, and look like they’re meant to last over time,” she says. But the reality is they go into the ground, never to be seen again.

Pāhiki’s unobtrusive design aesthetic is in direct response to that. The final products—caskets that trade metal, paint, synthetic fabric, and lacquer for wood, non-toxic glue, muslin, and coconut-oil finishes—are crafted to allow the wood grain to shine in its most organic state. The caskets are stripped of sensational flourishes, but not of sentiment. Family members can opt to purchase the “collaborative option,” for which Gusick and Baggett affix biodegradable linen loops around the casket’s perimeter to hold flowers from funeral guests.

Pāhiki also has a keen interest in engaging with communities that have large Native Hawaiian populations on Oʻahu and neighbor islands. During community talk stories, Gusick presents information about Native Hawaiian burial rights and practices—which involve cremating a body in an imu, wrapping the bones in kapa cloth, and burying them in lauhala—and how to perform them legally. As a Native Hawaiian, Gusick feels especially called to apply a Hawaiian understanding of ʻāina to her work. “Hawaiians were the original environmental stewards,” she says. “I can rewind back through so many generations of people where this was always their charge, to take care of the land, and now I can do it in a way that’s modern.”

As long as humans are dying, the death-care industry, which sees profits in the billions of dollars, will remain open for business. Pāhiki’s niche market is a fractional percentage of that, but it is poised to grow as an aging population becomes more informed of greener burial methods. While Pāhiki’s prototypes are evolving, the emotional gravity of the caskets will always be the same. “Isn’t it so crazy that we’re responsible for this thing that is so intimate for a person we’ll never meet?” Gusick often thinks. “We’ll never get to look into their eyes, never get to shake and touch their hand. It’s this very special, unique thing that will only be crafted and given to them once.” It’s a heavy order, but Pāhiki hopes to treat it lightly.

Above Ground

People who work in the death-care industry bring the lessons they learn in the field into their daily lives in quiet but profound ways. Here is what Gusick and Baggett have learned from the dead about how to live better every day.

Be introspective “Most people should contemplate death; it shouldn’t be an afterthought,” Baggett says. “We know it’s coming, we know it’s part of life—it’s just a transition, in my eyes.” Thinking about death and removing its negative connotations can lead to a more present and purposeful approach to life.

Be clear about your wishes “Documentation is an act of love,” Gusick says. “Put it in writing and in thoughtful detail.” The way you live isn’t always enough to let loved ones know how you want to be buried.

Be nice “There are 20 million things I don’t know about a stranger, but there is one thing I can guarantee I know about them and that they know about me,” Gusick says. That is the inevitability of death. “In society, you can quickly and easily dehumanize another person in the way you talk about them off-handedly or the way you treat them, not thinking back to that completely timeless experience you know you share with that person. If you reverse-engineer that awareness when you interact with people, you can use it to make a kinder, more insightful connection with someone. Or, you know, just try to not be a jerk.”

Complete Article HERE!

What do dying people really talk about at the end of life?

by Stacey Burling

It is common wisdom that nobody ever wished he’d spent more time at the office when he’s at death’s door.

That certainly makes sense, but Michael Ent, a social psychologist at Towson University, did what researchers do when confronted with unproven beliefs. He wondered if it was true. Then he tried to find out.

He and Mary Gergis, a nurse who also teaches at Towson, asked hospice nurses what dying people really talk about at the end of their lives. The 124 nurses from the Hospice and Palliative Nurses Association who responded to an online survey said patients are often more consumed with worries about how their families will fare after their deaths than they are with their own fates. They are about as likely to savor lives well led as to grapple with regrets. Many are worried about legacy and finances, a sign, Ent thinks, that some of them do indeed wish they’d worked more, or at least done a better job of managing their money.

Ent said the information, which has been accepted for publication in the journal Death Studies, could be helpful to caregivers. Some may be reluctant to push patients to engage in “life review” — end-of-life discussions of life history that have been shown to help alleviate anxiety and depression. “Sometimes patients might feel that it’s intrusive for a stranger to start asking them about their personal lives,” Ent said. However, if patients bring up some of the topics the nurses mentioned, that could be an opening for a deeper conversation.

Ent, whose wife is a nurse who has worked with hospice patients, said he was interested in what we could learn from the dying. Most of the academic studies he was able to find were more focused on practical aspects of support for the dying than on trying to harvest their wisdom. He couldn’t find anything about which subjects were on their minds. He read The Five Invitations: Discovering What Death Can Teach Us About Living Fully, written by a Buddhist hospice founder, but Ent wanted to do something more concrete and systematic. He read The Top Five Regrets of the Dying, also written by a hospice worker, and particularly questioned the top regret: “I wish I’d had the courage to live a life true to myself, not the life others expected of me.”

Again, Ent was skeptical. “I couldn’t imagine that being a top deathbed reflection,” he said.

For the survey, Ent and Gergis asked the nurses to list up to five “reflections” they heard most frequently from hospice patients. He concedes it would have been better to talk to patients themselves, but said privacy rules make them harder to reach. The nurses’ answers covered a wide range, from regrets to pride to faith in an afterlife. “I don’t want to be a burden” was a common sentiment, and many patients worried about how survivors would cope after they died. Some wished they had taken better care of themselves. Some said they were ready to go, while others wished for more time. They were thinking about whether their lives had mattered.

Ent categorized the comments and found that concern about loved ones was the most common response. Half of the nurses mentioned it. Regrets — these included people who thought they’d worked too much — came up 42 percent of the time, compared with 36 percent for gratitude. Concerns about legacy were cited by 29 percent of the nurses. Some of those people wished they had achieved more. About the same number of nurses said patients often said they were not ready to die (29 percent) as said they were ready (28 percent).

Ent said that the survey results show that hospice workers may want to spend more time allaying patients’ fears about how their deaths will affect family members.

He also thinks that research on what dying patients regret could help healthy people plan for the inevitable. Maybe fewer of us would be “blindsided” by our deaths if we talked more openly about mortality. Better financial planning could prevent many of the worries about unpaid bills.

Complete Article HERE!

The Nuance of Death With Dignity

Six states allow medical aid in dying, but opinions and experiences run the gamut

By Michelle Carter

Death with dignity is a movement gaining steam.  A June 2017 Gallup poll found that 73 percent of Americans supported medical aid in dying at a patient’s request, as long as it is painless.

Oregon is just one of six states plus the District of Columbia with laws in place that allow medical aid in dying. Doctor-assisted suicide will also become legal in Hawaii in January 2019. In 2018, 23 states entertained death with dignity legislation, and Maine is voting on a ballot initiative in 2019.

While the names of the bills vary — Death with Dignity, Medical Aid in Dying, Medically Assisted Dying — the bills are remarkably similar.

Death With Dignity: The Details

For death with dignity, participation by doctors or nurses is strictly voluntary. No doctor can be compelled to prescribe life-ending medicines, there are no government programs which will provide assistance and there is no database of participating doctors.

To qualify for a prescription for life-ending medications, patients must prove they are a legal resident of the state in which it is legal, be 18 or older, be mentally competent and diagnosed with a terminal illness that will likely lead to death within six months. Patients must also be able to self administer the medication. At least two physicians must determine all criteria are met, and several states with pending legislation require witnesses who are unrelated to the patient who have no financial interest in the patient’s estate.

Physicians must also inform patients of alternatives, such as hospice, palliative care and pain management techniques. Physicians may make a referral for psychological or psychiatric evaluation. The laws and bills also require the patient to make at least two oral requests with a waiting period of at least 15 days (20 in Hawaii) between requests, followed by a written request.

Controversy Still Present

Dr. Jamie Wells, a medical ethicist and a director of medicine for the American Council on Science and Health, said the debate over medically-assisted dying laws is difficult in part because we live in a binary culture which tries to reduce everything to black and white. But the individual situations where a law like this would come into play, she noted, are often gray.

“I wish we had more of an honest portrayal of how things happen in these circumstances. Nuances matter, and with these conversations about right to die and end of life, discussion is lost and progress is not made,” Wells said. “There are many shades of gray. Some people refuse further therapy. Sometimes trying the last-ditch chemo can be the cause of death.”

Australian scientist David Goodall made headlines in May when he traveled to Switzerland to end his life at age 104. He had at least one failed attempt to end his life at his home before traveling to Switzerland.

“When people have a failed attempt they can acquire new disease and illness which increases their suffering,” Wells said. “People who attempt to overdose on Tylenol, for example, can have profound liver disease as a result.”

Navigating Family Influence

End-of-life care is an area of medicine where a patient’s family often has an influence on care. But since death with dignity legislation requires non-family witnesses, patients aren’t pressured into ending their lives prematurely.

The opposite scenario happens as well — one where family members resist the patient’s desire to die.

“I’ve literally had a spouse say to me, ‘He can’t die until this date because that’s when the next check comes in,’” hospice nurse Alison Keeler of Washington state said. “Family isn’t always on board with a death with dignity decision. I became a hospice nurse because so often we were doing interventions on people that I felt were really hastening their deaths. They weren’t comforted. They suffered.”

Kristin Metzger of Maryland, another hospice nurse, has taken care of patients who had family members waiting on an inheritance and patients who receive the gamut of care because a family is depending on a Social Security check.

“I’ve seen people intubated, tube-fed, because there is financial gain,” Metzger said. “They’re the reason hospitals have ethics committees.”

Metzger stressed that terminal patients, regardless of whether they are in a state where medical aid in dying is legal or not, should not have to worry about suffering or pain.

“Is physician-assisted dying the answer or the Band-Aid? I actually wonder if we put our work and energy into addressing the root cause — if hospice isn’t actually the answer.” Metzger said. “Many people live longer on hospice because we’re managing their quality of life… If people truly understood what hospice and palliative care can provide for the terminally ill, no one would ever consider medical aid in dying.”

While Metzger, Keeler and Wells hold different opinions on death with dignity legislation, all three agreed it is important for families to discuss their opinions and wishes openly long before a crisis occurs.

“In a perfect world: Everyone has the right discussion at the right time when they can make the right decisions, but unfortunately people are messy and complicated.” Wells said.

Complete Article HERE!

Talking about advance directives is a perfect holiday conversation

By Kenneth R. White

Until Louisa’s accident, you could almost always find her working in her garden, pulling weeds, deadheading old blossoms, coaxing tomato vines up their stakes. Well into her 80s, she still made a full midday meal every Sunday for her family and an ever-shifting gaggle of neighbors, grandchildren, and friends — basically anyone who showed up hungry.

As vigorous as Louisa was, when she stumbled and fell earlier this fall, it changed everything. Landing awkwardly on the hard ground, her skull hit a paving stone, causing bleeding inside her brain that led to immediate unconsciousness. After Louisa was rushed to the local hospital, she underwent emergency surgery, but it yielded no improvement. Still unresponsive, she was transferred to a quaternary academic medical center for further evaluation and treatment. But there was nothing more to be done.

As her garden hibernated beneath piles of dead leaves and bits of snow, no one could believe this had happened — or imagine life without Louisa. The 180-degree pivot from healthy and upright to comatose left them breathless.

Family members encircled the hospital bed where she lay: broken bones set, minimal brain activity, a machine breathing for her. I asked them whether Louisa had an advance directive or a living will. Their silent stares were my answer.

It’s not an unusual situation, and they weren’t alone in saying no. In Virginia, where I live and work, nearly 5 million adults don’t have advance directives, including many of the patients I care for at the University of Virginia Medical Center. Nationally, a whopping two-thirds of Americans lack them. But this holiday season, it’s my hope to start to change those odds.

Advance directives are formal declarations of your last wishes, should the unthinkable — a fall, stroke, car accident, aneurysm, heart attack, or other incapacitating event — befall you. They explicitly lay out the extent to which you want lifesaving measures (breathing and feeding tubes, resuscitation if your heart stops, and the like) when other remedies won’t improve your odds of survival; or when, as with Louisa, there isn’t anything more than can be done and you will likely face your remaining days in an unconscious, possibly vegetative state.

In my practice as a palliative care nurse practitioner, in my classes teaching nursing and medical students, and even when I share meals with friends, I often work advance directives into the conversation. Some people twist in their seats, fumbling through their answers, while others are curious and upfront about what they do and don’t know. Still, I press.

I keep a stack of “Five Wishes” worksheets — a simple pen and paper guide to creating an official advance directive — in my office, car, briefcase, even in the guest rooms of my home (Harvard Health Publications, AARP, and others also offer them). And if I don’t have the paper copies on hand, a quick email later and my friend, colleague, student, patient, or family member has what’s needed to get started.

Advance directives get a lot of bad press for being macabre. But I urge you to think of them as love letters to the people you adore. In these documents, you define your last wishes, set parameters for care, and help those who will be caring for you make decisions based on what you want and, just as important, what you don’t want, when curative treatments are off the table.

These love letters safeguard those thrust into the difficult position of making medical decisions for you — some about life and death — so they don’t have to be guided only by well-meaning strangers like me, as Louisa’s family and countless others have had to do.

Advance directives are easy. They don’t take long to complete. Anyone can create them.

As families gather for the holidays, fretting about food, finances, gift giving, politics, and more, I urge them to ask everyone around the holiday table — middle-aged, old, young at heart, and everywhere in between — the following questions. (They’re the same ones I ask my patients who find themselves at various stages in the trajectory of life-limiting illnesses, bringing into razor-sharp focus what matters in the time they have left.)

  • What would you want done for you if the unthinkable happened — like a catastrophic fall or a major stroke — and treatment options are limited?
  • Would you want every medical intervention, or only some?
  • Do you want to die in a hospital or, if it’s possible, at home?
  • Are there things undone you wish to tend to, people you want to see, and things you want to say?
  • Are there things you fear, wonder, or wish for?
  • Essentially, what really matters to you?
  •  
    When death is imminent, perhaps a matter of days or weeks, patients I’ve had the privilege of caring for often want to leave the hospital and spend their final days in a favorite chair, with a favorite pet, satisfied by favorite meals in the comfort of their own home. Others wish to express their love and gratitude for those around them, imparting last thoughts with purpose, dignity, and humanity. Some want to connect with a loved one with whom they’ve sparred.

    To do any of this, they need to declare their intent.

    No one needs to wait until death is near to understand or crystallize their last wishes. There’s no time like the present — and no time like the holidays, when family and friends gather — to ask those you love, as well as yourself, about what they want the end of their life to look like, no matter whether that day seems far away or if it might be closer.

    The only way to find out is to ask.

Providing comfort and a connection as the end draws near

In 2008, Sister Rose Mary Dougherty created a Companioning the Dying training program. She started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.

By Debra Bruno

In the United States, there’s probably no better way to spoil cocktail party chatter than by introducing the subject of death, dying or the end of life.

Yet, in the same way that the birth process went from a doctor-run event to a movement in which women took charge of their own pregnancies and deliveries, there is growing interest in thinking about the dying process. In part, that’s because the large population bulge of boomers is reaching a point where the end seems not that far away. But also, many people have had the experience of sitting at the bedside of a dying person without the slightest clue what to do.

The growing interest in the topic is seen in death cafesdeath doulas, the “death positive” movement, hospice work and even the End-of-Life University . There are special decks of cards that allow families to work through end-of-life decisions.

And increasingly, classes, seminars, and programs are available that try to help people understand how to comfort those in the last stages of life.

Sister Rose Mary Dougherty, 79, a member of the religious order School Sisters of Notre Dame, calls this companioning the dying and she decided to make it a focus when, years ago, she found herself sitting at the bedside of a dying priest who was a friend. Next to her sat another friend, also a priest.

She watched as the two priests sometimes prayed and sometimes were quiet, together, doing nothing at all. At one point, the priest sitting next to her turned and said: “I don’t know what a priest should do anymore. I don’t know what I’m to do here, but I can be here. Maybe that’s my final vocation.”

That’s when it hit her: Even people trained in comforting feel a sense of helplessness when a friend or family member is dying. But she also resolved to do something about it.

So in 2008, Dougherty created a nine-month Companioning the Dyingtraining program, based in Baltimore. Today, the program provides instruction for hospice workers, caregivers, volunteers and family members on how be with someone in their final months or days.

Companioning the Dying concentrates on something that nearly everyone will have to face at some point in their lives. In the past, it was common for elderly family members to live with their adult children as they aged. Their last days were spent at home, surrounded by loved ones.

Society is different now, at least in many places in the ­industrialized West, where a youth-focused society has pushed end-of-life concerns mostly out of sight. As a result, people can feel unprepared — even panicked — when they have to deal with end-of-life issues.

“We’ve lost the place of dying,” says Jan Booth, a hospice nurse who also helps out with the Companioning the Dying program. “How do we bring aging and illness and dying into some kind of context that doesn’t change the grief that’s inherent, but changes our capacity to be with it?”

Dougherty started with a few basic principles. One was to help caretakers learn to become better listeners. “It’s sitting with a loving alertness,” she says.

Dougherty, now emeritus program director of Companioning the Dying, lives in her order’s residence in Baltimore. Her voice is weakened by Parkinson’s disease, yet her piercing blue eyes demonstrate the same alert presence that she teaches.

Companioning the Dying has something of the feel of group therapy — with readings, exercises and discussions — in which participants can talk freely and without judgment about anything they might have experienced with the dying, Peter Fitz, 75, says. He wanted to get involved in hospice volunteer work and did the program three years ago.

“Every death, and every person, is different,” says Fitz, a retired English professor. “The crucial part is to find out, with the individual not only on any given day or a particular hour or minute,” where they are. The task, then, is “emptying out your suggestions for people and learning to listen in a different way.”

Those “suggestions” can often end up being the worst thing people can do, says Sallie Tisdale, author of “Advice for Future Corpses (and Those Who Love Them).” People often say things such as “Are you sure the doctor knows what he’s doing?” and “God always has a plan,” she says. “Please don’t say those things.”

She suggests something similar to the Companioning program. “People ask me how to prepare. I say, stand at the doorway and take a self-inventory. Try to drop your own agenda. If the person says, I want to eat ice cream and watch a Yankees game,” just accept that, and do that for them she says.

Lourdes Salazar, a caretaker by profession who also volunteers for her church, St. Camillus in Silver Spring, says that one exercise her Companioning the Dying group did was to choose a day and behave as if it is your last day on Earth. She went out to lunch with her son and told him what she was doing. “I never realized how wonderful it would be to have a lunch with you on my last day,” she told him.

One of the main advantages of Companioning the Dying say participants, is the way it helps them all appreciate their own lives. “When you change your concept about the meaning of death, your life changes,” Salazar says.

Even a nurse who has spent most of her career working with terminally ill children and their families has found that the experience of the course helped her when she was faced with five nearly consecutive deaths in her own family. Janet Will says she thought she was experienced in handling difficult situations. But having the Companioning program allowed her to focus on her own grief and avoid the role of the professional.

“The people who love you the most don’t want to see you grieving any more,” Will says. “Where do you go with that?”

Xaverian Brother Michael McCarthy says that his group ended up being a “tremendously rich melting pot” of people from all walks of life. The group covered details such as what is involved in the dying process, but it also offered time to reflect on being compassionate with oneself even as you help someone else.

It’s not about taking a person’s blood pressure, he says. “You’re going to be present, and if you’re not present with yourself, then your presence isn’t going to be as meaningful” to the dying person.

Peter Fitz remembers visiting a man at a hospice in Baltimore. Fitz didn’t know him. The man was in a “highly agitated” state and couldn’t speak. Fritz asked him if he could nod his head. “Can I take your hand?” he asked. The man nodded yes. The two held hands until the man finally fell asleep.

“In a funny way, he gave me comfort, too,” Fitz says. “It’s an experience that in some important way we shared.”

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