[M]y mother once told me a very sweet story about how I, as a toddler, handled my grandmother’s death. After the funeral, my mom asked me if I knew where Grandma had gone. I told her, as matter-of-factly as a 2-year-old could, that she was in a garden, surrounded by daisies (her favorite flower).
Even at such a young age, I’d developed a sense for the appropriate kinds of euphemisms for death — and I knew that sharing them would bring comfort to my mom. But that didn’t change the fact that my grandmother was dead — like, she was dead and buried and there weren’t any daisies in there with her, though I didn’t quite comprehend that yet.
It was actually much later, when I was 17 and attending another relative’s funeral, that the reality of death truly hit me. My uncle had died after being diagnosed with cancer way too late, and his passing was a real shock to the family. The memorial service was at his house in Virginia and the choir from his church sang some upbeat hymn about going where you were always meant to go. Listening to that, and knowing how he died, I thought, This must be a joke.
I bristled at the idea that dead people were anything other than dead. On one hand, I found it naive to think about death in such rosy terms, inwardly rolling my eyes at those who did. On the other, I believed that death was supposed to be frightening, and by rejecting the idea of an afterlife or deliverance I all but cemented that fear in my mind.
In other words, I gave myself two options: I could scoff at death or fear it wholeheartedly. Multitasker that I am, I decided I could do both.
I found myself viewing death as two very different (and equally problematic) beasts — a hulking, dark thing that we only discuss in whispers and a lurking shadow that simply absorbs the rueful jokes we hurl at it.
Neither of these images get death quite right, but there I remained, with death constantly on the brain. For fear of seeming morbid or like a total downer, I kept most of my thoughts about death and dying to myself. Yet, a question nagged at me — Was I alone in feeling this way?
The urgency of that question has only increased over the course of this year. That’s why, this fall, R29 conducted an informal survey about death, to which more than 300 people, mostly millennial women, responded.
Nearly half of all respondents said they learned about death by the time they were 5 years old, citing such sources as dead pets, 9/11, Mufasa, and, like myself, the death of a loved one. They grew up believing that the deceased ended up in God’s arms, went to heaven, took on another earthly form, or were left to fade into nothingness.
Regardless of their foundational experiences with death, most people still think about it — and in a small, strange way, I found that comforting. “Ever since turning 30, I think about death every couple hours,” one person wrote. “It’s almost the only thing I think about,” wrote another.
The thing is, most people don’t simply fear death or laugh at it. Instead, people describe how they use death to interrogate their religious beliefs, take stock of their health, and motivate themselves to spend time with distant, elderly loved ones.
Many said they hope they’ll die quickly and at an advanced age. Some alluded to suicide attempts (If you’re experiencing suicidal thoughts, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or the Suicide Crisis Line at 1-800-784-2433.) or an unshakable conviction that they’ll die young. One person qualified their acceptance of death like this: “I deeply fear dying, but don’t fear death.” In total, 71% admitted to having imagined their own death.
I’ve been turning that number, 71%, over and over in mind my since first seeing it. For one thing, it answers my question: I’m anything but not alone in constantly thinking about death. It also makes me regret that we didn’t ask how many of them ever told anyone about imagining their own death. I wonder how much higher or lower that number would be.
Here’s what I want to tell everyone who thinks about death on the daily: You’re not morbid. You’re human. And you don’t have to keep those thoughts to yourself. After all, chances are, most other people are thinking them, too — and death is neither a beast nor a shadow.
It’s something that informs and gives meaning to how we live. As one person put it: “The more I learn about death, the less I fear it.”
Welcome to Death Week, in which we’ll attempt to unpack our feelings, fears, and hang-ups about death, dying, and mourning. We’ll do our best to leave no gravestone unturned.
To fully appreciate the concept of assisted dying among African cultures requires that we decolonise death and dying, writes Sibonginkosi Mazibuko.
In a video released earlier this month, Archbishop Emeritus Desmond Tutu stated that he supports the right of individuals to an assisted death. The writer says the African version of assisted death ensures the individual who lived wickedly is forgiven and can join their ancestors.
Johannesburg – The burning question of euthanasia (assisted dying) has recently been in the spotlight again, but sadly the whole debate appears to ignore other cultural perspectives.
The concept of assisted dying is not really foreign to other cultures. To fully appreciate its essence among the cultures of African people – in South Africa in particular – requires that we decolonise death and dying.
Colonial teachings on death and dying revolve around the concepts of heaven and hell. Heaven and hell represent the Western epistemology of understanding dying and death.
The pain the sick endure is understood through Western thinking while ignoring and undermining other forms of knowledge.
Some African people believe that all dead people join their ancestors. It is believed that dead people are actually not dead. They live in another world where they give guidance to those still living on Earth.
However, access and acceptance in the place of the dead are not automatic. They are dependent upon one’s conduct on Earth. People who behaved in unacceptable ways, especially murderers and witches, are believed to struggle to meet their ancestors and, prior to confessing to their evil deeds, to find dying difficult. It’s submitted that such people suffer grave illness and pain to the extent that they wish for an early death to relieve the pain. Which is where the question of euthanasia comes in. There is a school of thought agitating for the laws of the country to be altered to allow such people to be assisted to reach death.
Their families must make the decision, with the elders calling the meeting to reach consensus. Then the sick can be assisted to die peacefully without euthanasing them at all.
It is also believed in some cultures that people who struggle to die are likely to be murderers and witches. The evil wishes and thoughts we hold for others also qualify us as such. Betraying your brethren to your enemies is an act as wicked as murder and witchcraft. The majority of traitors live with shame all their lives because they are rewarded by the enemy for betraying their own. But the wealth they get to “enjoy” grates on their consciences. They appear to be happy but they are bleeding from shame on the inside for evil acts they find it difficult to confess to. So they live heavily conflicted lives.
Think of a traitor whose hands are bloodied because they sold out their own to the enemy. They live luxuriously at the expense of others. In South Africa, for example, people betrayed the liberation struggle in many ways. They accepted money from those that killed their own. That is why it’s believed the ancestors should be angry with these people.
To be freed from the burden of a heavy conscience requires that the person confesses and sometimes this will involve physical cleansing. Otherwise these people die long and painful deaths. No medicine works until they confess to their evil deeds.
Such people usually have difficulties when they are supposed to die. Some African cultures resolve this by asking the person to confess. During the confession, only the close family is allowed near the dying person to hear their secrets. The dying person may also request that people they wronged be called in so they can apologise to them. If they refuse, they become the guilty ones while the evil-doer departs with a clean conscience.
At another level, the dying person may be required to apologise to the ancestors for actions that may have been unacceptable to the dead. The family slaughter an animal to appease the ancestors and the elders conduct the ceremony and plead for forgiveness of the sick person, requesting that the ancestors allow the person to join them in the after-death world. Usually the sick person does not live another day.
For me, then, such conversations’ with death assist a sick person to die peacefully. There is no poisoning. The dying individual only has to confess to their evil deeds to depart with a clean conscience. Those left behind are required to let go of any wrongdoing the dying person committed in their lives.
In these terms, euthanasia is not necessarily a strange thing. It may be that we only need to embrace our cultures and bring back good practices and beliefs colonialism made us discard. In fact, many African people still practise them.
The African version of assisted death ensures the individual who lived wickedly is forgiven and can join their ancestors. Otherwise it’s believed they become bad spirits wandering on Earth without a place to rest. We call them ghosts.
[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
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
[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.
[F]or a young person, attending the first funeral for a peer can be very difficult. You may be grieving yourself, but also worried about what to say to your friend’s family.
The death of a family member or friend upends the world of those who grieve; everything they knew of themselves and their environment is changed, foreign. Loss can be isolating and unfathomable — because absence is unfathomable.
By definition, to offer a condolence is to tell them you suffer with them.
Be sincere
When your words are honest and direct, stripped of pretense, you acknowledge the enormity of their experience. Avoid assumptions: “He has gone to a better place,” “Her pain has ended.” There’s no need to explain what has happened — who can? Confirm your compassion for those grieving and their importance to you: “I am sorry for your loss.”
It’s common for young people to post memories of friends on social media. But their parents and grandparents may not see those. Sometimes your post may be the perfect thing to say, whether in person or in a handwritten condolence note: “I remember how he used to crack us up with his songs when we car-pooled to soccer practice.”
Be brief
Don’t be long-winded; the death of a loved one can scramble people’s thoughts and consume their attention. “There is a sort of blanket between the world and me,” the author C.S. Lewis wrote in “A Grief Observed” a year after the death of his wife, Joy. “I find it hard to take in what anyone says.” Nothing you say will diminish the space that grief is taking up in the grieving person’s heart or head. Grief is inherently selfish — we can’t help but dwell on what the dead meant to us — so resist the urge to monopolize the grieving person’s time or attention. Eye contact, your hand on their arm, or a hug, if appropriate, can often say more than words.
Be available
Don’t just say, “Let me know if you need anything.” Most people will never ask. Do they need groceries, their kitchen cleaned, their laundry done? Do they want you to recount your memories and stories? To listen to theirs? Let them know their well-being is important to you and check in periodically to see how they are doing. Hospice nurses talk about the importance of being present for the dying, but those left behind very much need your presence, too.
Be accepting
Don’t judge or criticize the way someone grieves. Rituals surrounding death — like wearing black, washing and dressing the dead, sitting shiva, even delivering casseroles to mourners’ homes — vary across cultures, religions and time. There has never been and will never be one way to grieve. What you say to people about the death of someone close to them should reflect this. When time and support provide them with the means to navigate their new world, they may thank you. But don’t expect it. Being a good human is its own reward.
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.
No 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
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)
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 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.
‘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.
[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.
The Irish Hospice Foundation wants people to talk about death, dying and grief more openly.
By Órla Ryan
WE WERE AFRAID to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.
Rebecca Lloyd’s mother, Christine, died 12 years ago. She was diagnosed with Motor Neurone Disease (MND) eight months previously.
MND is a progressive neurological condition that attacks nerves in the brain and spinal cord. This means messages gradually stop reaching a person’s muscles, which leads to weakness and wasting.
Rebecca notes that MND is often referred to as the “1,000 day disease” as most people diagnosed with it die within that number of days.
“She had much, much less time. It was horrible. She was such a huge part of lives,” Rebecca says of her mother, who was in her early 60s when she died.
Christine
“It turned my life, our lives, upside down … MND is a debilitating disease. Diagnosis to death was less than eight months … It changed our lives dramatically.”
Rebecca told TheJournal.ie she was living in California with her husband and baby son when her mother was diagnosed with MND.
They moved back to Yorkshire in England, where Rebecca is from, and were there for the final few weeks of Christine’s life.
‘Grief is just so hard’
While she is grateful she was around to spend time with her mother, Rebecca deeply regrets that she and other family members didn’t talk to her about her death.
“We were afraid to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.
Even as an adult grief is just so hard. What I’ve learned since then is that talking about it always makes it easier.
Rebecca praised her father Paul for the “magnificent” care he provided for Christine, enabling her to stay at home until the day before she died.
“I made it my life’s goal to help people who are dying or bereaved.”
Rebecca says a large part of her job is “talking to people who are fit and healthy to get them to talk about planning for death”.
“We can make lots of decisions when we are calm and fine … We are not as good at making decisions when we’re in hospital and crisis has hit us.”
Death charter
With this in mind, Rebecca helped devise the Irish Hospice Foundation’s (IHF) Charter on Dying, Death and Bereavement. The survey aims to gather the views of people in Ireland about death and grief before presenting them to the Government in a bid to help guide the national approach to services and supports for dying and bereaved people.
It has received about 600 responses in three weeks, and the goal is to reach at least 1,000. Rebecca says she has been “blown away” by the reaction.
“It’s notoriously difficult to get people to fill in surveys – you’re normally lucky if you get 20 or 30 people, especially dealing with something people don’t want to talk about. People obviously really do want to talk about it.”
Rebecca says people often avoid talking about death and dying because it’s an awkward topic and they might not know what to say.
She says some bereaved people have told her grief starts when the funeral ends.
We’re brilliant at funerals, the Irish are brilliant at funerals. After the month’s mind [mass] the support disappears. Especially for carers, they’re kind of just left.
Rebecca states that bereaved people often become socially isolated and sometimes people avoid bringing up their loss, noting: “We feel crippled with anxiety that we just don’t know what to say.”
The goal of the charter is to place death and bereavement on the national agenda so people are more comfortable discussing it, and have access to services that will help when they’re in need.
Rebecca notes that Ireland has an ageing population and, according to a previous IHF survey, three quarters of people want to die at home.
“We want the Irish people to say what they want to see happen. The thing is we don’t know what they want.
“Are they afraid of pain? Are they afraid of what will happen to their family? Are they afraid of talking about death?”
‘Very lonely decisions’
IHF chief executive officer Sharon Foley said: “We are asking people to remember and reflect on their own experiences of dying, death and bereavement and re-imagine what it might take to facilitate a good death.
For all of us there will come a time when we will need care through illness and it’s important we understand how people look at death and dying to ensure correct supports are in place.
Campaign supporter Jillian van Turnhout, a former Senator, recently spoke about helping her father have his say at the end of his life.
“Talk about end of life when you are healthy so you really know what your loved ones want.
“My father Michael wished to remain in Clonskeagh community nursing home instead of going to hospital when he was told he had 24 hours to live. Clonskeagh was his home at that point and it was where our family ensured he remained until he passed away a year after the decision.
Very lonely decisions have to be made at end of life and it’s important we feel no guilt in making these choices because we know it’s the wishes of our loved ones. My family and I made sure dad’s wishes were held to the end and that’s what keeps us strong now.
The IHF is currently holding death cafés, where people get together and talk about death and grief over a cup of tea and a bite to eat, in various locations around Ireland. The next one is due to take place on Monday at Dublin City Council Civic Offices on Wood Quay from 11am – 1pm.
“We need to be more honest, attend death café conversations and complete the Irish Hospice Foundation’s survey so we can make a path for the people we love and know what matters to the people of Ireland. Talk in advance and check in with each other, even if it’s only one dinner conversation,” van Turnhout advised.
In total, 71% admitted to having imagined their own death.
