Category: Philosophy of Living

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Meet Two Portland Women Who Make Their Livings Talking About the Ultimate Taboo: Death

An exclusive excerpt from Casey Jarman’s new book, “Death: An Oral History.”

By

Jana DeCristofaro
Jana DeCristofaro

[J]ana DeCristofaro may have the toughest job in Portland. Each morning, she drives to a large Craftsman house a block off Southeast Foster Road, and goes to work among the dead.

To be precise, DeCristofaro makes her living talking to survivors: bereaved children and teenagers. She’s the director of children’s grief services at the Dougy Center for Grieving Children & Families, a nationally renowned center for counseling kids in Southeast Portland’s Creston-Kenilworth neighborhood.

That means DeCristofaro, 42, spends much of her days starting the kinds of conversations most people scramble to avoid. She sits with children whose parents have recently died, and asks them what they miss most about their lost loved ones. She starts group conversations between grieving teenagers. And she advises parents about how to break the worst possible news to their kids.

DeCristofaro’s job is haunting and difficult. But it isn’t unique. When Casey Jarman began writing a book of interviews about people who have confronted death, he found many Portlanders who confront mortality on a daily basis.

“Call it exposure therapy,” Jarman writes. “If you have a fear of heights, spend some time in the mountains. If you’re scared of death, what can you do, short of dying? You can spend a year of your life talking about it.”

Jarman, co-founder of Party Damage Records and a former WW music editor, spoke to hospice workers, philosophers and Oregon’s former death-row executioner. His book, Death: An Oral History, comes out next week.

Among the people he interviewed are two Portland women whose job is digging in the roots of grief. In the following pages, excerpted from the much longer conversations in Jarman’s book, you’ll meet DeCristofaro and Holly Pruett, who arranges and officiates DIY memorial services.

These women confront on a daily basis the most basic and frightening fact of our existence: that it ends. But that’s just where these conversations start. —Aaron Mesh

jana-decristofaro
Jana DeCristofaro

The Dougy Center for Grieving Children & Families is a low-key place, despite its austere name.

One might expect a woman with the title of coordinator of children’s grief services to be relentlessly serious or walk on eggshells. Jana DeCristofaro, though, is unfussy and direct.

This is a place where people come to talk. Kids talk to other kids. Teens talk to other teens. Parents talk to parents. Some of that talking is about death—the center helps people who have lost parents and siblings—and some of it is just talking. More than 30,000 children and teens have taken advantage of the Dougy Center’s services since it opened in 1982, and DeCristofaro has talked, laughed and cried with a lot of them in the past 15 years.

I graduated with my Master of Social Work degree in 2001. I got a job doing research, and over the course of the year, I was feeling very unfulfilled with that work. A friend of mine was like, “You know, you should check out this place. I don’t know, it’s called the Doughy Center or Dooey Center? There are kids who go there, they’re sad. They have teddy bears and they cry.”

I was like, “What are you talking about?”

I looked them up, and they were having volunteer training a few weeks later. Our volunteer trainings tend to have really long waitlists, but I happened to write in just after somebody had canceled. They invited me to come to the training. It was held at a small building in North Portland. It was dark and gloomy, in a basement, and we were all squished in there, sitting on colored pillows. I thought, “What have I gotten myself into?”

The Dougy Center was the first program in the country—I think the world, too—to start working with grieving kids in a peer support model. The whole idea is bringing kids together of a similar age who have a common experience of the death of a parent, sibling, primary caregiver, or—in the case of teens—a close friend or a cousin.

We have over 30 groups for kids and teens that are split up by ages: 3 to 5, 4 to 8, 6 to 12, 11 to 14, and 13 to 18.

The Dougy Center was started by a woman named Bev Chappell. She’d had a long-standing connection with Elisabeth Kübler-Ross, a pioneer of the death and dying field back in the ’60s and ’70s. A 13-year-old boy named Dougy Turno, who had an inoperable brain tumor, wrote to Kübler-Ross and said, basically, “Hey, how come kids get cancer? And why do we die?” She wrote him back, and it was a long, colorful, illustrated response.

In the late ’70s, Dougy came to Portland for some experimental treatment, so Elisabeth reached out to Bev Chappell, who lived here, and was like, “Hey, would you meet up with the family, help them get settled?” Bev did that, and she started visiting Dougy at the hospital. She looked around and noticed that, one, the medical community was not down with telling kids what was going on. Because back in the day, the approach was not to tell them.

But Bev hung out with them long enough to realize that the kids knew. She heard them talking to each other and starting conversations about things like: Do you think you’re going to live long enough to go to prom? Have you kissed a girl? Do you think you’ll get a chance to do that? What do you think it’s like where we’re going? You know, all the stuff that the kids talk about in group. They were doing it without adults facilitating the conversations.

That’s where she got the idea to start a center. She hosted the first group in her basement, and I think there were four boys who came to that group, and from there it has just grown. She’s still around. She lives in East Portland, and was just at our benefit gala a couple of weeks ago. Now we have 500 children and teens coming through the doors every month at three locations.

When the teens first come in, you can often tell they do not want to be here. I’m like, “Anyone willing to admit you’ve been dragged here against your will?” In this last orientation, all five teens raised their hands. I was like, “Wow, I’ve got my work cut out for me.” But just acknowledging that, it opens up the energy in the room in such a dramatic way. I tell them, “I’m not here to convince you. I won’t take it personally if you decide not to come back. My job is to try and show you everything, what we are and what we’re not.”

It doesn’t work too well to force people to talk about this stuff against their will. One time, I asked a teen group, “How many people got something for coming to the Dougy Center?” It was like, “Yeah, I got out of school.” One kid said, “I got a new MacBook.” Everyone was like, “Damn it! We should have asked for more.” I thought I was going to start a revolt. It doesn’t take long, though, for most of them to realize we aren’t in the business of making them do, say, or think anything. They get comfortable being with other grieving teens pretty quickly.

Once I had a group of teens talking about how the death they experienced has affected what they wanted to do with their lives in the future. Many of them were like, “I want to honor my parents by going to their alma mater,” or “I really want to become a nurse because the nurses helped my brother so much when he was sick.”

There were a lot of those sort of more expected answers, and then there were some kids who said, “I hate doing well at things now. I actually don’t want to do well. I don’t want to have any success with my life, because to do it without my person there is too devastating. I’d rather feel like I haven’t done anything.” I thought, “Wow, what a hole to be in.” I never considered that moving forward without this person and having success could mean leaving them behind. That really opened my mind.

Anytime somebody says something that surprises me, I always try to remember that there could be someone else in the group going through something similar. My job as a group facilitator, if I’m doing a good job at it, is to speak to what’s not being spoken about in the group. Many times there’s a sense of, “Yeah, yeah, we all know this is true.” And I ask, “Who’s had an opposite experience?”

With the younger kids, I think about one boy in particular. We sat quietly and we were talking, and he had so many questions—not for me, necessarily, just questions. He was talking about how it didn’t make any sense to him. His mom had died, and he was like, “You know, people say that when your person dies, they are looking out for you, they are watching you from above, and making sure everything’s OK. Our roof sprung a leak last night, and, I don’t know, don’t you think my mom in heaven looking out for me would make sure the roof didn’t do that?”

I was like, “Hmm. That’s a really interesting question. What do you think?” And then it just went on. We talked for 20 minutes. There were so many questions this little boy was really wrestling with—answers he’d been given from adults in his life that were very black and white. He was like, “That doesn’t make any sense to me.” He wasn’t having an opportunity to really muck around in the gray areas. “Well, they say when somebody goes to heaven, they never look back because they’re so happy to be in heaven, but don’t you think if you were a mom, you’d miss your kids?” Here’s a little boy thinking his mom doesn’t miss him.

That was really powerful for me because oftentimes we think that, developmentally, these kids are concrete thinkers and we tell them concrete answers. But many times they are very wise and have some really deep philosophical questions.

One little kid, their person had died by suicide, and they were like, “I’m just so worried. I hear when people die by suicide, they go…” and he pointed down to the ground with his finger. He’s like, “But I really think they went…” and he pointed up. Just for him to be able to say, “This doesn’t work for me,” was pretty amazing.

Some people will ask, “Do you have a really hard time now? Thinking that everyone’s going to die?” I tell them I’ve always had that. Long before I started working here. Working here just solidified my anxiety a bit, and perhaps enhanced it.

I also accept the fact that when I go anywhere, I always have at least two or three stories about how someone has died doing what I’m about to do. That just happens—it’s just the way it is. Like, this river is so beautiful, but there was that brother who fell off that rock over there, and then there was the guy who went mountain biking and hit a pothole and cracked his head open. But I came that way before I even had this job. My mom’s been like that my whole life: “Don’t do that, you’ll die.” I already know all the ways you could die, but now I have particular stories that match up with them. I have to spend a lot of time being, like, “Yes, and we’re going to still do that.”

Holly Pruett
Holly Pruett

Holly Pruett

[H]olly Pruett officiates ceremonies from cradle to grave—think baby blessings, weddings, retirement rituals, and so on—but her interest in funeral rites has made her one of the central figures of Portland’s burgeoning DIY death scene. She went into business for herself after two decades as a political consultant and public relations director. (Her résumé includes helping form Basic Rights Oregon.)

I have always looked at cherished social conventions like weddings and funerals as old-fashioned relics. But I never spent much time thinking about what, if anything, they should be replaced with. That’s Pruett’s line of work. She is a certified Life-Cycle Celebrant, and while that term may elicit images of tree people wearing white dresses and daisy chains praising “the goddess,” Pruett is clear-eyed about the need for ritual in our lives.

A friend read in People magazine about a burial ground in South Carolina called Ramsey Creek Preserve, [where] people were buried in a natural wooded setting.

My friend thought, “If this is in People magazine, and it’s happening in South Carolina, why is it not happening in Oregon, the so-called green sustainability capital?”

When we got in touch with the national Green Burial Council, they said, “You know, there’s somebody else who’s expressed interest in your town.” It happened to be a woman who was a Life-Cycle Celebrant. I got together with her and asked, “What’s a Life-Cycle Celebrant?” When she described it, I was like, “Whoa.” It seemed to be a convergence of many of the things that I was interested in.

When I explain to people what a Life-Cycle Celebrant is, I often say it’s like a secular clergy person. Because not only can I officiate weddings—and, technically, I do have clerical credentials to do that—but I am there for people in the process of figuring out what ceremonies they need in their life.

Somewhere around that time, I realized that the most common form of human memorial, among a lot of people I’d come across, was no memorial. I slowly started to recognize that I was in a position to address some of this cultural vacuum.

All of the needs that organized religion and social rituals used to serve are still with us. It’s just that a lot of those forms have become archaic. Funerals are just a bad brand. A funeral director once said to me, “In the funeral chapel, you’ll often see a man gripping his wife’s arm, saying, ‘Don’t you dare waste our money on something like that for me.'” Because they see a retired clergy person mispronouncing the name of their best friend, and it’s like, what’s the point?

I’m coming to see that one of the most powerful roles I serve is that I’m typically the first person to meet the deceased after they’ve died.

I’m not a medium working metaphysically, but I am leading their loved ones through the memories and through the presence that is evoked through their stuff—a quilt they made, the letters they wrote, their emails, the impact that they had on others. Their legacy can be so much clearer to me, in a sense, because I’m coming to it fresh.

I hear things like, “I felt closer to my mother during the process of working with you than I did in the last months or years of her life.” Perhaps she was suffering from dementia. They’ve gone through their mom being sick and dying, and it’s still very raw, a very painful thing. Then they revisit, with me, the stories of their mom’s early life and how she became who she really was, and how everyone else saw her. It’s healing.

In one ceremony, the client generated a list of words—associations that reminded her of her mom. We printed them out on these really nice, blank business cards. We put them in one of her mom’s pocketbooks. She was a really sharp dresser and always known for having a pocketbook. During the memorial, a large family gathering, we passed the pocketbook around. Each person pulled out a card, and that word—in connection to that physical object—evoked her presence.

I met a young woman in her 30s who was diagnosed with stage IV lung cancer. She hired me to help put together her death plan. She wanted to spare her husband as many decisions as possible. I created a lengthy questionnaire for her to use to clarify her wishes. Some things were clear—like, she wanted to be cremated—some things weren’t.

Do you want to put together the playlist for the music at your memorial, or choose the food, or do you not want to? Are you planning a party, or is it more like this or that person should speak? I always say, with these planning questionnaires, just respond to those questions that really resonate with you. None of it is mandatory.

She was like, “How can I possibly answer these questions on my own?” She brought together her 10 closest friends from various parts of her life, told them there’d be pizza, and they talked about death. She selected a subset of my questions and invited me to observe.

What was phenomenal was that most of these friends hadn’t met each other. They were from different parts of her life. Very easily, the first time that they could have met would have been at her memorial or at her deathbed. Of course, they are all very bereaved about her diagnosis and her living with this, but societally, what kind of permission is there to talk about that and for her to say, “OK, I know I’m going to die, and I need you all to help me talk about that and to tell me what you think happens after we die?” It became, “I don’t know what I think, what do you think?”

It was like they were starting to do a workout together, you know? Because they’re going to have to train to hold this grief together for her.

My life has become heavily engaged in conversations about dying, death and grief. In my personal life, I’m at an age where many people who I personally care about are sick or dying, or coming to me with their bereavement. Of course, I have a professional practice of assisting people in memorials and home funerals. At times, I think, “What have I done to my life?”

This interest in rekindling ceremony could be the start of something much bigger, or it could easily become another self-help program. You can buy kits online for your divorce party—so much ritual has already been commodified. Think about a baby shower: How do you mark a baby coming or a wedding? It’s become all about the stuff that you buy, or these silly, giddy, frivolous activities. What about this threshold that these people are about to cross?

Most of us aren’t living in a way that says, “I belong to the world, the world needs me.” If we don’t celebrate people’s death, then they never really belonged to the bigger story.

Complete Article HERE!

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Six Steps to Prepare for End-of-Life Care

By Ellen Rand

As a hospice volunteer, I once asked a woman I’d been visiting for several months what she wanted for her upcoming 75th birthday. She was wheelchair-bound, living in a nursing home, and in the last stages of metastatic breast cancer.

“Life,” was her answer.

Life. Of course. We all want to live as well and as long as we can. Eventually, though, our bodies betray us and we begin to show the telltale signs of aging. And, as we age, we have to reconsider and accept who we are now, and think seriously about how we want to live throughout our last chapters.

hospiceNo one wants to think about the prospect of death. But as we lurch into old age, we are faced with the prospect that many of us will need what our medical system does not currently provide: high-quality end-of-life care. It’s more than a personal concern; it’s a pressing societal issue. Projections are that, by 2030, one-fifth of the population will be 65 and older, compared to 13 percent in 2015, and 9 million people will be over 85.

Currently, our country’s end-of-life care is fragmented, costly, and unsustainable. Too much aggressive care is given that is futile and ruinous to people’s quality of life. Doctors frequently don’t discuss with patients and family what truly matters to them and offer comfort; and those left behind are often wracked by a sense of guilt, haunted by the choices they’ve made in the heat of the moment without really knowing their loved one’s wishes.

Fortunately, there are people, places, and organizations that are taking a serious look at how to improve quality care, and some are making strides in the right direction.

In my book, Last Comforts, I chronicle the current realities of end-of-life care, and point to some of the outstanding pathfinders and innovations in this field that could make a difference for all of us. It’s not just about “brink-of-death” care. It’s about how to better educate doctors and nurses; provide more effective dementia care, design and operate better long-term care facilities, recognize the unique challenges of minority and LGBT people, and provide better training and a living wage for the nursing assistants and home health care aides who do so much of the hands-on care for elders. Ultimately, we need to understand how public policy decisions about palliative and hospice care affect us.

What can we do as individuals? The first, and probably the toughest, task is to look our own mortality squarely in the eye. That’s no easy feat, and certainly not encouraged in our death-denying culture. But if we do, we can be better advocates for ourselves—and our loved ones—and can begin to understand the many choices we will have to face, and take some responsibility for ensuring our wishes are met.

Here are some of the lessons I’ve learned—from my experience as a hospice volunteer, as well as from my research as a reporter—on how people can prepare better for the end of life:

1. Educate yourself about the different key treatments for end-of-life care, so that you can make informed decisions

Before we can talk to our family or friends about what matters to us and what we’d want at the end of our lives, we have to think about it seriously—and get better educated about it.

These are profound questions about the very heart of our lives: If you had a limited amount of time left to live, what would be most important to you? What would make life continue to be worth living? What would you be willing to tolerate, in terms of rigorous and aggressive treatment, in order to achieve a longer life?

That’s the framework for looking into the many tools that hospitals have at their disposal to prolong life, and how those tools may be employed at critical moments. It helps to know in advance what these life-saving procedures actually look like in practice, so you can better assess which, if any, would be acceptable to you, and under what conditions.

If you’ve never had to consider these kinds of aids before, it can be difficult to envision. You may just end up relying on your doctor’s recommendations or, more problematically, movies and TV portrayals, where unrealistic outcomes are the norm.

CPR, advanced life support, intubation, and feeding can be life-saving, particularly when you are young and have an acute condition. But, for the elderly, they can often significantly decrease quality of life without providing much benefit. For example, many doctors will prescribe feeding tubes to patients with dementia, even though it can lead to pneumonia, infections, and ulcers, and may not prolong life much.

To better decide for yourself, it might help to read about these procedures, or to even watch videos that show what the treatments involve, which you can find here.

2. Start conversations with loved ones so that they are clear about your wishes for care

Adult Daughter Talking To Depressed Father At Home
Adult Daughter Talking To Depressed Father At Home

If you’re clear about what you value and how you’d want to be cared for toward the end of your life, don’t keep it a secret! This is the time to have a conversation with your loved ones about what you want—particularly critical guidance for them if you are in a medical crisis and cannot speak for yourself. And bear in mind that this is not a one-time conversation. Your own feelings may change over time, depending on your circumstances, and if they do your loved ones need to know.

Nobody wants to talk about these things. How do you start? Remember when our children were younger and we looked for “teachable moments” to discuss pressing issues? I believe in looking for “teachable moments” for talking about serious illness and end-of-life issues, too. If a friend of the family or the parent of your child’s best friend is going through a medical crisis, for example, it might be a perfect time to turn the conversation to your own family, and your own thoughts and feelings on the matter.

If you need a good prompt, The Conversation Project offers useful “starter kits” to kick off a discussion, including one for those suffering from dementia.

If you cannot speak for yourself in a medical crisis, an advance directive and a designated health care proxy will help to navigate the system more smoothly on your behalf. Choose a health care proxy who not only understands what you want, but is willing and capable of carrying out your wishes. You can find advance directive forms for each state at Caring Connections, a program of the National Hospice and Palliative Care Organization.

3. Understand the benefits of palliative care and hospice care and know when to ask for them

Palliative care is a medical specialty that is available to anyone with a serious illness, whether or not you are dying. Palliative care addresses your symptoms, whether they’re physical, such as pain or nausea, or whether they’re emotional or spiritual. Interdisciplinary teams of caregivers including doctors, nurses, and social workers are dedicated to providing coordinated care that plans your care based on your goals and values. And you can still receive curative care concurrently. Palliative care may or may not lead to hospice care; but it will allow you to decide how you want to be cared for over time as your illness progresses.

Research suggests that palliative care is an important factor in determining how families rate the quality of end-of-life care received by loved ones. In one study, cancer patients who were randomly assigned to receive early palliative care versus standard medical care reported better moods and quality of life throughout treatment, and they lived longer on average, even though they received less aggressive treatments. A recent review of research found that, for oncology patients, early palliative care improves quality of life, “mood, treatment decision-making, health care utilization, advanced care planning, patient satisfaction, and end-of-life care.” It also may improve symptoms and survival.

Hospice care differs from palliative care in that it provides comfort care only if your illness is life-limiting and you have a prognosis of six months or less, and you must forgo any treatments aimed at curing the illness. Hospice care is provided mostly in people’s own homes (and that includes assisted living and nursing facilities), but can also be provided in a hospital, or in a dedicated hospice facility. Though some people avoid hospice because they (mistakenly) believe that it means “giving up,” at least some research suggests that hospice patients are more likely to live as long (or longer) than terminally ill patients in hospitals.

Both of these services can make a tremendous difference in the experience of facing a terminal illness. Just having a say in one’s care and knowing that medical staff and loved ones understand your wishes can be a huge relief.

4. Learn how to communicate effectively with doctors and medical staff

Many doctors are far better at the art and science of medicine than they are at actually communicating with patients. And yet, if you have a serious illness and have to make informed decisions about your care, you want someone to communicate your choices, the risks and benefits of treatment, and the pros and cons of different options, as clearly as possible. Your doctor should be comfortable talking to you about end-of-life wishes in an honest, meaningful way, and listen, show empathy, and encourage questions. Research has shown that patient satisfaction goes up when doctors employ these types of skills, and they can have an impact on outcomes as well.

Be prepared to ask questions about recommended medications or surgeries and their side effects, alternative therapies, and the anticipated outcomes of treatment versus no treatment. Too often we leave the office without this vital information and end up making decisions for expensive and futile treatments that do little to prolong life and can have serious consequences on the quality of the life left to us.

It’s often helpful to bring along a supportive family member or friend to a doctor’s appointment to take notes; or, if that’s not possible, to record your conversations with your doctor. That way, if you receive bad news and find yourself overwhelmed with emotion, you’ll have the important information written down or recorded to refer to later once you’re feeling calmer.

5. Research nursing and assisted living facilities in your community, in case you need them

I’d bet that nobody ever thinks, “Gee, when I get older, I really want to go live in a nursing home.” We’d prefer to remain independent and age in place in our own homes. And, indeed, more options are becoming available for that to happen. This is encouraging, since reports suggest that aging in place can have emotional and health benefits for those who can manage it.

But, for some of us, end-of-life care may involve assisted living or nursing home care, especially if we live long into old age. Not all of us will have supportive family and friends available to care for us if we need help. Many do not have adult children; or have adult children who live too far away to provide daily care.  Luckily, there are some innovative long-term care developments that offer patient-centered care. That means that you spend your day according to your schedule, not an institution’s: rising, dining, dressing, and participating in activities as you choose. Moreover, there’s much to be said about living with others in a setting that can combat the loneliness and isolation that afflict so many elders living alone and that contribute to poor health.

You can learn more about culture change and patient-centered care in long-term care settings from two organizations, The Pioneer Network and LeadingAge. The Pioneer Network offers a list of excellent questions to ask if you’re considering a move to assisted living. You can also compare quality of care in a nursing home by checking Medicare’s Nursing Home Compare website, and looking at their guidebook for how to assess staffing, operations, and care at a nursing home.

6. Advocate for better end-of-life care for everyone

This essay is adapted from Last Comforts (Cypress Publishing, 2016, 350 pages)
This essay is adapted from Last Comforts (Cypress Publishing, 2016, 350 pages)

In addition to planning for our own care, I can’t emphasize enough how important it is to advocate for everyone. Our current system is plainly unsustainable. I believe that for aging baby boomers, it’s time to tap back into our activist genes and address the many intertwined social and medical issues involved in end-of-life care.

The very foundation of how society pays for palliative care should be rethought and adjusted to respond better to the way people really die now (as opposed to how they died in the ‘70s, when hospice began). The way we deal with multiple cultures and differences in sexual and gender orientation has to become more sensitive. The way we design and operate long-term care facilities has to change to better enhance the dignity and quality of life of their residents. The way we train and compensate direct care workers, such as certified nursing assistants and home health aides, needs to reflect the growing importance of their role. The way public policy addresses medical care but not the critically important element of non-medical support for the very frail has to change, too.

In the medical realm, we can support initiatives aimed at compensating professionals who go into palliative care fields. It’s still too often the case that tests, procedures, and treatments are reimbursed at a higher rate than are the compassionate discussions with patients and their families that are the heart of good end-of-life care.

We can also support research into palliative care. Too few studies have looked at some of the important elements of care, like how much palliative care is tied to pain reduction, cultural issues, spiritual issues, or even patient satisfaction with the process.

We must do all what we can to arm ourselves with knowledge, to communicate clearly with others about our wishes, and to advocate for quality end-of-life care. Our lives, literally, depend on it.

Complete Article HERE!

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How would you like to die? It’s time to talk about it…

‘You get to die only once, and you have one chance to get it right’

By Alan Kirk

Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.
Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.

[H]ow would you like to die? Is this a question you ever ask yourself? More importantly, is it a question you ever answer? And, most importantly, is it an answer you share with your family?

For many it seems, the answer is no. Yet, when asked, it is something many of us would like to do. When the Irish Hospice Foundation (IHF) carried out research, they found 60 per cent of people thought there wasn’t enough discussion about death, yet 66 per cent have never discussed what they want around their end-of-life care with family.

“It’s a clear case of what people want versus what people do,” says Sharon Foley, chief executive of the IHF. “You get to die only once, and you have one chance to get it right. It’s so important to think about what you want for yourself at the end of life, now, while you still have capacity, to ensure the proper care and support for you, and less trauma for your family and loved ones.”

>When the doctor asked to talk to my dad and I, and we followed him into a side room, I knew it wasn’t good. All previous conversations had been in the ward corridor. This room had comfy chairs and a box of tissues. The room itself was the opening conversation about my mum’s death. He sat us down and explained that my mum’s stroke had been catastrophic causing significant brain damage, paralysis, double incontinence and that her chances of survival were not good. I had seen enough of my mum to know also that, if she did survive, her chances of living were not very good either.<

The doctor asked us what we wanted to do, if my mum needed to be resuscitated. Neither of us hesitated or even looked at each other to confer. We both said immediately, “Do not resuscitate.” We were lucky. We knew what my mum would have wanted. She had told us often enough. But I often wonder what would have happened if we had looked at each other first, and one of us defiantly had said yes.

But this is what often happens, as the decision over a parent or spouse’s death is left up to family members who are already in a deep place of distress. We know medical science is improving all the time and people are living longer, an obviously positive development. But it is also a challenge to respond to the care needs of an ageing population. While the medical profession has rightly focused on quantity of life, has society focused enough on the issue of quality of life? And, in particular, end of life?

According to Foley, no. “I liken it to the discussions in the 1980s around breast cancer. Women didn’t discuss it with friends. There were whispers about the ‘Big C’ and, as a result, women didn’t get screened, or get any support. Now screening and support are a part of life. We need the same sea change around our wishes regarding end of life.”

Critical conversation

For obvious reasons, thinking about our, or our parent’s death, is an upsetting notion, but, as Justin Moran of Age Action explains, it is critical to have that conversation while you still can. “We all think and prepare for what we leave behind in terms of our house and our legacy, but what about your own death? Thinking clearly about how you might want to be treated – or not – and ensuring decisions aren’t left to those you are leaving behind is about empowering people to make decisions for themselves while they can.”

The Irish Hospice Foundation encourages people to give guidance to family through a a campaign called Think Ahead and Have Your Say campaign, and this year legislation has come out introducing the opportunity for us all to leave a “living will”.

The Advanced Healthcare Decisions Bill gives people the chance to communicate their final healthcare requests when they might no longer be in a position to do so, and to provide healthcare professionals with important information about the patient’s treatment choices. You can also appoint a designated healthcare representative – a close friend or family member – to make healthcare decisions on your behalf if you no longer have the capacity to make those decisions.

A good death

“There is a lot of debate around what a ‘good death’ is,” says Foley. “This is about making death – something already heartbreaking and distressing for all – as respectful to the wishes of the patient as possible.”

Justin Moran acknowledges these are hard conversations to have with our parents or children. “It’s about ensuring that you retain as much control as you can over that part of your life.You don’t want to leave that responsibility to the people you love, who are already going through a tough time.”<

But is it enough? Back in that hospital room, we agreed to a DNR if my mum stopped breathing. But it was another five and a half years before she took her last breath. In the final months, in consultation with doctors, we took a further step to withdraw active life-prolonging treatment after she suffered a series of hospital-admitted infections which caused distress to everyone, especially her. We knew my mum’s wishes. But even at the end all we could do was withdraw treatment and wait and watch for the several weeks that nature took its course. She was never in pain. But she was distressed. She watched us, watching her die.

In many ways my mum had a “good death”. She died in my arms at home, with my dad and brother holding her hands. We had spent the previous two weeks constantly by her side, talking and touching, loving and laughing, holding her tight and letting her go. But, as her daughter, it was a terrible death.

Once we knew she was dying, once doctors confirmed she had passed the point of any recovery, there was nothing we could do but let her linger and languish as her body slowly shut down. She could easily have died when we had nipped to the loo, or gone to put the kettle on. The stress of that fear haunts me still. The conversation about dying has only just begun. But, for now, if we love the life we live, if we love the family we leave behind, if we want to be in control of our living, then as a society and individually, we need to talk more about dying.

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Aid in dying doesn’t increase death, it reduces suffering

By

Colorado’s Proposition 106 would allow terminally ill patients to take life-ending, doctor-prescribed sleeping medication.
Colorado’s Proposition 106 would allow terminally ill patients to take life-ending, doctor-prescribed sleeping medication.

Re: “No on Proposition 106: Aid-in-dying measure lacks proper safeguards,” Oct. 11 endorsement.

I practiced family medicine in a small town in Oregon for 35 years, retiring in 2012. I cared for many terminally ill patients, and when Oregon’s Death With Dignity law passed some of my dying patients, albeit rarely, would ask me if I could help them achieve a death that they could control. My experience caring for thousands of patients over the years had taught me that death is not the enemy; suffering is the enemy. Their dignity and suffering were not defined by me, their doctor. I listened to my patients.

Colorado’s Proposition 106 is similar to Oregon’s law (in effect almost 20 years).

The concerns published in the Denver Post editorial have been examined and re-examined and have not occurred in Oregon, and will not occur in Colorado.

In Oregon there is no evidence of abuse of the law, no evidence of a slippery slope and no evidence of the “irreversible door” the Post editorial posits. More people do not die in Oregon, but fewer people suffer.

Aid in dying is patient-driven and patient-centered. “Professionalism” means putting the patient first. Medical aid in dying is not suicide, as your editorial inappropriately described it. Someone who commits suicide has, by definition, a mental illness and is “disconnected.” As a doctor, our job is to refer those patients to an appropriate mental health care provider, as we would for any patient with similar symptoms.

A person in the process of dying wants to live but will not. She or he is “connected”; to family, hospice and the medical system which includes doctors, nurses, family therapists, music therapists and others.

Medical aid in dying is a voluntary process. No one who does not agree with it needs to participate, and in fact it has enhanced end-of-life care, palliative care, and hospice care in Oregon, something that all Coloradans should support. I am proud that I live and practiced in Oregon, and that I was able to help my dying patients achieve a compassionate and desired end to their own stories. Proposition 106 should be approved by Colorado citizens.

David R. Grube, M.D., is national medical director for Compassion and Choices in Oregon.

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Her life ‘at an end,’ ill Blaine woman turns to death midwife for help with last days

By Kie Relyea

Death midwife Ashley Benem, right, sits with Pam Munro at Munro’s home on Friday, July 8, 2016, in Blaine. Munro, who had Alzheimer’s, was in the process of voluntarily stopping eating and drinking with the guidance of Benem. Munro died July 17.
Death midwife Ashley Benem, right, sits with Pam Munro at Munro’s home on Friday, July 8, 2016, in Blaine. Munro, who had Alzheimer’s, was in the process of voluntarily stopping eating and drinking with the guidance of Benem. Munro died July 17.

[W]hen Pam Munro was ready, she gathered her family and friends at her bedside. There, with a tiara perched on her head, she held court in her home for an hour or two in the evenings while she still could. Together, they joked and laughed as she waited for the death she had planned.

The 62-year-old Blaine woman died July 17.

Twelve days earlier, she had stopped eating and drinking – choosing to accelerate her death instead of lingering into the later stages of her rapidly progressing Alzheimer’s.

Her father had dementia with Lewy bodies, her grandmother Alzheimer’s. She saw them deteriorate slowly until they were institutionalized. She didn’t want to end her days locked away in a care facility, a vegetable, not knowing her family and friends.

“My life really is at the end. After that, it’s not living. And there is no cure,” Pam said in an interview on her third day without food and drink, when she could still talk. “I want to die with dignity. I want to enjoy everything I can.”

Steve Munro, her husband of 15 years, looked on as she talked. Sitting near her was Bellingham resident Ashley Benem, a death midwife who helped the Munros navigate the end of Pam’s life. Benem is the founder of the nonprofit A Sacred Passing: Death Midwifery Services.

Pam already had decided to voluntarily stop eating and drinking, which is legal and also known as VSED, when the Munros met with Benem for the first time in January.

“It was pretty daunting. We didn’t know what to do, how to go about it. We needed advice,” Steve, 66, said Sept. 26. “It gave me comfort. Part of it was they knew what to do. I didn’t know what to do.”

Benem is among a growing number – exactly how many isn’t known because there is no regulatory agency – of people who help the dying and their loved ones in their walk with death. As a birth midwife ushers new life into the world, a death midwife helps ease people into death.

“They are the bookends of life. We start with an in breath and we end with an out breath,” said Henry Fersko-Weiss, author of “Caring for the Dying: the Doula Approach to a Meaningful Death,” which will be published in 2017.

Practitioners in the emerging field are known by a number of names, including death doulas, home funeral guides, transition coaches and end of life guides.

They offer a variety of services. Some are volunteers. Others, like Benem, are professionals and charge a fee.

What they share is a desire to comfort, to bring death back home into the family fold, and to once again make death a normal part of life instead of sequestering it away in hospitals and funeral homes.

A guide for the dying

Benem came to midwifery after years of medical experience as an EMT and paramedic. After the birth of her son, she became a licensed massage therapist and birth doula before becoming interested in serving as a death midwife.

Benem and her team at A Sacred Passing offer a number of services, all non-medical, that are tailored to individual needs.

They provide support and help people plan for the end of life. They work with funeral homes, hospice and others to augment existing care and services, they create vigils, they sit with the dying, they help with the practical, such as documents needed for end of life care, and they address spiritual needs.

“We go where the patient goes,” Benem said.“There’s not a single nurse or LPN (licensed practical nurse) that doesn’t want to sit at the bedside of someone that’s dying. They simply can’t because of staffing.”

She said death midwives can be advocates who help the dying and their loved ones navigate the big picture, who help them consider quality of life through the entire dying process.

“Our current models of care, though excellent at handling specific aspects of the end of life journey, leave people with huge gaps to try to navigate for themselves,” Benem said. “For example, you have an excellent physician to handle your medical care, but no one to handle the social, spiritual or economic questions or concerns.”

Such services are a convergence of two trends: People who want to die on their own terms, and the aging of baby boomers, a population juggernaut of about 75.4 million, who are driving the conversation much as they pushed for – and succeeded in getting – more personal, less institutionalized childbirth in their younger days.

We’ve lost touch with the deeper sense of what this journey is about and how to go through it.

Henry Fersko-Weiss, author of “Caring for the Dying: the Doula Approach to a Meaningful Death”

No one is tracking the number of people turning to such services but anecdotal information indicates an increase, including from people who are going to training offered by Benem.

“The sheer number of people calling, emailing with questions is on a steady rise,” Benem said. “Our classes are typically full four months in advance.”

Fersko-Weiss also reported seeing more people showing up for training and classes offered through the International End of Life Doula Association, which the former hospice social worker co-founded in 2014 to establish a standard of training and to certify death doulas.

Benem, who said she traveled and took a multitude of classes, gleaning what she needed to become a death midwife, also supported creating standards for licensing, and said she wants Washington state to certify death doulas and death midwives.

New name, old ways

The desire to bring death home is a desire to return to the old ways, those in the field said.

“We’ve lost touch with the deeper sense of what this journey is about and how to go through it,” Fersko-Weiss said.

Before the Civil War, family and friends prepared their dead for burial, according to “A Family Undertaking,” a 2004 documentary about the home-funeral movement in America.

Benem said her grandmother served as a midwife, a function common in many agricultural and rural communities in North America.

“They provided all the prenatal, birth and postpartum care for women in the town, village or community. They would fetch the doctor from the local city if there was a major situation, but most was done at home with the midwives,” she said.

“These are the same women who came to sit with the dying and tend to the very ill or injured. They were the ones who washed the bodies and prepped the body and home for receiving the wake and vigil keepers,” Benem added. “This is what she did. The training was all on the job. No formal schooling. She delivered babies and the dead. The work has not changed. Just the titles. It’s a new name for an old practice.”

“I’m at peace”

Back in the Munro household in Blaine, Benem sat near a tired Pam as she talked about her struggle with Alzheimer’s.

She would brush her teeth, forget that she had and wonder why her toothbrush was wet. She left groceries in the trunk of her car for days. She put muffins into the oven, forgot about them, and couldn’t figure out why the house was full of smoke.

Her balance was worsening rapidly. She kept falling. Benem, who had been monitoring Pam, set up a 24-hour schedule so she wasn’t left unattended and to provide some relief to Steve, who was struggling to care for her.

In the final days of her life, Pam talked about the lotion and oils her family would rub on her body after she died – giving them one last chance to touch her and be with her. She showed an ocean-themed shroud she would be wrapped in, one created for her by April Lynn, a death doula who works with Benem.

“I’m at peace. The closer it gets to my journey date, the more excited I am. I’m going my way,” Pam said.

She talked about the rocks gathered at seaside and placed downstairs in her home. She wanted loved ones to write a message or a prayer on a rock and then “huck” it – she was specific about the word – into a bay. The ritual would act as a continuation of her love for beaches and beachcombing, which included having her ashes spread at sea in the San Juan Islands.

“And when you huck it, please be sure to also huck any pain or sorrow you might be ready to release as well,” Pam said in a note. “I will be there with you. I will help you. I will always love you.”

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Hospice volunteers find joy and wisdom in comforting others

Volunteers at MJHS Hospice offer comfort to its residents during their final days.
Volunteers at MJHS Hospice offer comfort to its residents during their final days.

 
By Karen Frances McCarthy

[E]ach day, ordinary Riverdale residents arrive at a hospice on Henry Hudson Parkway and volunteer to sit with the young and old, rich and poor, religious and non-religious, comforting them during their last days.

Many would see this as a gloomy way to spend time, especially in a society uncomfortable with the idea of human mortality. But volunteers at the 18-bed MJHS Zicklin Hospice Residence describe the experience as anything but morbid. They unanimously agree that sitting with those approaching the end of their lives has enriched volunteers’ own lives in unanticipated ways.

One of the volunteers, Dejanee Velasquez, 23, said it is often the patients who brighten her day.

“I’ve been visiting one patient regularly and we have formed a good relationship,” Ms. Velasquez said. “One day the nurses told me that the patient hadn’t been talking too much lately. When I went to visit with him that same day, he smiled so big that it made me smile … he was talking so much and [said] he was glad that I visited him that day.”

The founding of the modern hospice system is widely credited to Cicely Saunders, who worked in the UK in the middle of the 20th century. She wrote: “You matter because you are you, and you matter to the end of your life.”

But nearly a decade before Ms. Saunders’ birth in 1918, a charity group known as The Four Brooklyn Ladies was inspired by similar ideals to found a precursor of the modern hospice in New York in 1907. After going door to door to raise money, they got a small tenement building in Brooklyn to offer compassionate, dignified and respectful end of life care to local residents.

Despite this pioneering start, New York has been slow to embrace hospice care. In 2012, 32 percent of New Yorkers were enrolled in a hospice during the last six months of their lives, compared to 51 percent nationwide, according to numbers reported by WNYC radio. Experts surmise that this may have something to do with patients› fears that a hospice referral means accepting they will never recover, according to media reports. Another reason may be New York’s medical culture that focuses on curing patients rather than caring for them and eventually letting them go with dignity, NPR reported.

For hospice staff and volunteers, this presents unique challenges in trying to make everyone feel loved, respected and comforted. Their approach sounds simple – companionship. Some find ways to use their individual abilities: in creative drawing, helping to write letters or playing music. Sometimes they will meet outdoors, especially if the weather is good and a patient would like some fresh air. The change in scenery can often provide a boost to the spirit.

“I never cease to be amazed by the quality of individuals who are drawn to offer volunteer services to our patients and families,” said Patricia Cusack, director of MJHS volunteer services. “[It] enlightens me on a daily basis to be more cognizant of the awesome reality of the goodness within people who freely give their time, talent and energy to lighten the burden for hospice families and patients.”

Susan Adler, 54, is a licensed massage therapist and long-time hospice volunteer.  She was inspired to volunteer after by the hospice care her mother received at the end of life. Ms. Adler said she decided to try to make a difference in the lives of others by offering massage to help with pain relief and relaxation.

“It can be difficult to see people struggling physically with the loss of their health and strength, and struggling emotionally with the knowledge that they are soon going to die,» Ms. Adler said. “But I am grateful to be able to provide some relief to them through massage, and help make them feel cared for.”

One of the most important parts of care is listening, and this is something volunteers are better equipped to offer than the medical team. Patients sometimes share memories they do not want to share with the doctors or even family members or clergy. They can express pride in their accomplishment and feel they can admit regrets without being judged.

More often it is the little human gestures that count. Ms. Adler recalls being given strict instructions by an often-ornery woman to make tea by grating ginger and boiling water. Doing her best and terrified she got it wrong, she returned to the room, cup in hand, to be met with a smile and the words: “No, no, dear, that’s for you.”

Volunteers such as Ms. Adler and Ms. Velasquez agree that with all the hassles and ingratitude of daily life, walking into the hospice and being appreciated by patients for making a difference in their lives has been rewarding.

But it is not without challenges. There will come a day when the people with whom they have shared their time, their life›s stories, their laughter, and their friendship will no longer be waiting. Sometimes they will sit vigil while their new friend slips away. Sometimes they will arrive the next day to find an empty bed. Fond and final farewells are part of life for those who sit with the dying.

Yet, they say they would not trade this sadness or waver in their commitment to offer simple human compassion and companionship. Many of them have found something positive in witnessing the cycle of life intimately and often. Listening to stories of people›s lives in their twilight hours, learning what it important and what is meaningless when all is said and done, have given them a perspective and wisdom, and a sense of the preciousness of life and human dignity, volunteers said.

“The experience has changed me tremendously,” Ms. Velasquez said. “The way I think about life has also changed. Death is not picky: it can happen to anybody at any age. Because of this, it’s important for me to be grateful for everything that I have and to continuously live and enjoy life.”

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In facing death, this doctor sees a way to live well

Dr. BJ Miller does not work to heal patients, but to ensure quality of life amid advanced or serious illness. Sometimes people suggest his job is depressing, but Miller doesn’t see it that way. When people are dying it changes how they live, he says. Miller gives his Brief but Spectacular take on dying and living.

 

JUDY WOODRUFF: Now to another of our Brief But Spectacular series, where we ask interesting people to share their passions.

Tonight, we hear from BJ Miller, a palliative care doctor in the San Francisco Bay Area. He explains how working in end of life care can help inform the way we live.

DR. BJ MILLER, Zen Hospice Project: When people find out I’m in palliative care, first of all, many people — you start with, well, oh, well, what is that? The interdisciplinary pursuit of quality of life, and the context is always advanced or serious illness.

Palliative care is irrespective of the clock. You don’t have to be dying anytime soon.

The curiosity from the public tends to be — and I hear this all the time — wow, you know, that must be so depressing. You know, you must be depressed all the time.

It’s not always happy, by a long shot, but there is this side effect that seems to come. By facing mortality, it seems to inform how you live. So, the secret is that facing death has a lot to do with living well.

The whole reason I went into medicine was because I became a patient. In college, sophomore year, my dear friends and I were horsing around one night. We decided to climb a parked train. I happened to have a metal watch on, and the — and, when I stood up, the electricity arced to the watch, and that was that.

It was sort of an introduction to my own death, my own sense of mortality, my own finiteness.

You’re the object of a lot of sympathy, pity, a lot of head-tilts. At first, it’s kind of sweet, but then it starts turning a little saccharine. You quickly look down that road, and it’s not too long before you realize that’s a dead end. That’s just another way of removing yourself or being removed from the flow of society.

One of the ways that I got through some of the early days was insisting that this was a variation on a theme we all experience, and that theme is — basically is suffering. Some way, life is not going to do what you want it to do. Your body is not going to do what you want it to do. You will suffer. It’s unavoidable.

And there is this unnecessary rind of suffering, which is so — which is the demoralizing part, because it’s the invented stuff. It comes in terms of how we treat each other, sometimes poorly. It comes in those moments of abandonment.

We end up warehousing folks who are sitting on piles of wisdom and experience and just plain hilarious or good stories. If we could sort of shift that a little bit, there’s a lot more peace waiting for all of us as we age.

I think a lot of us are really worried, not so much about the fact that we die, but how we die. Very often, patients themselves, the people doing the dying, will get to a place of acceptance, beyond acceptance even, you know, ready to go. You’re done. You’re done with this body.

A lot of the effort, my effort, the team’s effort, the hospice organization’s effort, is actually not so much on the patient, the person doing the dying. It’s on the family.

In a way, it’s harder to accept the death of another person than accept your own, especially when you really love that person.

I’m BJ Miller. And this is my Brief But Spectacular take on tying dying and living.

JUDY WOODRUFF: You can watch additional Brief But Spectacular episodes on our Web site, PBS.org/NewsHour/Brief.

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