The transition from curative to palliative care

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[K]athryn Martin, registered nurse and Faculty Lecturer in the Faculty of Nursing, doesn’t attend the funerals of her deceased patients. But she knows nurses who do.

“You become quite close with the families,” Martin says. “It’s okay to have feelings about the situation. I respect other nurses attending funerals, but I personally don’t (attend). It’s important to set your own boundaries.”

Martin says decades of working in the intensive care unit have made an impression on her. The ICU is a hospital unit dedicated to treating patients with severe and life-threatening conditions. She remembers cases from years ago with vivid detail, and feels she has made a difference in the lives of her patients.

Nursing is a complex and dynamic profession. RNs work with patients and families around the clock, and are often advocates for patients and their families. Nurses advocate for time, information, increased pain medication, spiritual services, and any other needs families may have.

One of nursing’s significant challenges is transitioning patients with life-limiting illnesses — illnesses in which death is the expected outcome such as cancer, heart disease and dementia — from curative to palliative care. The goal of curative care is to modify a disease, either through management or working towards a cure. It can involve intense medication regimens, 24/7 nursing care, repeated hospital stays with limited visiting hours, and it isn’t often provided at home. Palliative care, alternatively, focuses on comfort as opposed to modifying or curing a life-limiting condition. It is provided both at home and in health facilities such as long term care centres or hospitals. Common aspects of palliative care are reduced invasive procedures and increased
pain medications.

When the transition between curative to palliative care goes well, the grief impact on families is minimized and the work experience can be satisfying for health care professionals. When it doesn’t, many walk away with feelings of hurt, failure, and of letting loved ones or patients down — people close to patients often interpret the transition as medical professionals letting patients die. An article in the Journal of Palliative Medicine reports that during the five years previous to 2012, at least half of the physicians surveyed had experienced a patient’s family members, another physician or another health care professional describing their palliative methods as “euthanasia, murder or killing.”

“Transitioning from curative to palliative care is anything but a static process,” says Kristin Jennings, an RN experienced in palliative care. “Unfortunately, (to some) it feels as though our medical system gives up hope.”

In spite of treatment that can be harsh, palliative care is not diagnosis-centred, but person-centred care. It focuses on the needs of all key players: patients, families, caregivers, and loved ones with hopes of creating the most possible value in a person’s last days, weeks, or months. It is a broad category, encompassing anything from the removal of life support to increased pain medications.

The increasing prominence of palliative care in the past decade is a marker of change in medical thinking towards a more holistic model of care. Palliative methods are now initiated much earlier in treatment than they have been in previous years and are starting to be provided concurrently with curative methods. Comfort matters, and it matters throughout the entire experience of illness.

“In an ideal world, palliative care would be initiated when an individual is diagnosed with a life-limiting illness,” Jennings says.

The value of a “good death” is frequently discussed in health care literature and public media. Value lies not only in how we live, the arguments go, but also in how we die. A good death can mean a week on the beach with loved ones — it can also mean minimizing time spent breathing with a ventilator. The scope of end-of-life care is broad, but value can be created in both situations and all in between.

“There are only two things we can guarantee in life: birth and death,” Jennings says. “The processes of being born and dying are dynamic and unique experiences that deserve equivalent amounts of respect, care, compassion and love.”

“Death has the potential to be a beautiful experience.”

Jennings chooses to attend patient funerals — she says they keep her humble.

“I get to share grief, see an individual’s beginning, middle and end, and see how many people were impacted by their life.”

The most crucial factors in a smooth transition between levels of care are time, information, and communication. Martin says she’s seen physicians give families three to seven days to process information in the smoother transitions she has participated in.

“Lack of time is the worst thing that can happen,” Martin says. “Resistant family members need to be able to ask questions. You need to take any and all questions. You need lots of people to interact with resistant family members and provide consistent information over those days.”

When a transition is abrupt, key players feel they are letting their loved ones down. Family meetings, multiple conversations with care providers, and openness to questions are all necessary.

“(Relatives) feel they are letting their loved one die … They need lots of information about the pathophysiology of what is going on,” Martin says.

Second-year nursing student Olivia Roth says she most likely will attend the funerals of her patients.

“Attending funerals will allow me to grieve, and make the process feel full circle,” says Roth.

Roth had an “eye-opening” experience caring for a palliative patient in her first year.

“It really transformed the way I thought about nursing … It was hard for me to understand that switching from curative to comfort measures would allow her to die with dignity,”Roth says.

Palliative care can also be provided in final moments when an individual is dying suddenly, or after a short period of illness.

When a patient dies suddenly, or without a period of anticipation by the family, there are greater feelings of loss than when a death is foreseen. Family members and other loved ones experience increased stress and higher rates of morbidity in the two years following a sudden death.

Loved ones sometimes turn to requests for potentially inappropriate treatment. Potentially inappropriate treatments are those that may have a small chance of treating the patients, but ethical considerations justify not providing the treatment. Some examples of potentially inappropriate treatment could be extended intubation, or life support beyond a reasonable timeframe.

Responding to requests for potentially inappropriate treatment can create moral, ethical, and legal dilemmas for health care professionals. Potentially inappropriate treatment can include ICU stays when prognosis is poor. Intensive care unit stays are costly in terms of dollars as well as discomfort, and can cause potentially traumatic experiences. Forced intubation, intravenous and arterial lines, time spent breathing on a ventilator, and decreased ability to communicate all add to the dramatically uncomfortable experience of an ICU stay.

Finances are also considered. Health care professionals never hope to have a conversation regarding the ethical and financial benefit of keeping somebody’s loved one on life support, but public dollars are sometimes a factor to be considered in medical decision making.

“It’s important to consider resources,” Martin says of one of the hardest conversations professionals and families face. “Access to intensive care beds, nursing care, ventilators, medications … It’s all very expensive.”

Many health authorities have developed policies and timelines to facilitate transitions from curative to palliative care, and the denial of requests for potentially inappropriate care. One significant aspect of the grief experience can be anger towards professionals, but evidenced-based, health authority-wide timelines can lessen feelings of anger towards and abandonment by the health care team.

Along with the families of patients, health care professionals can also  walk away from end-of-life experiences with pain and grief.

“It’s exhausting, both emotionally and physically,” Martin says. “But when (the transition) goes well, it’s one of the most satisfying experiences you can have. You feel like you’ve made a difference.”

Complete Article HERE!

Why Millennial Women Need To Start Talking About Death

By Sara Coughlin

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[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.fear-of-dying

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.”
the-more-i-learnIn 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.

Complete Article HERE!

African version of assisted dying is forgiveness

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.
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.

Complete Article HERE!

How To Deal With A Personal Tragedy

Losing a near one can cause us great emotional pain and it is very important to help ourselves be in the right frame of mind. This article deals with a few ways on how you can overcome a personal loss

By: Shubham Ghosh

[W]hen we lose a loved one, the pain is unfathomable. It can even lead to an emotional stress, sometimes even lifelong – in case one shared too close a relation with the departed soul.

A news of a death, even if it is expected creates a wide range of emotional reaction in us. There is in fact no real order of the grieving process that we face as a result of death.

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These feelings that take over in the event of a death are common and you yourself might not be much prepared for the intensity of the emotional disorder that follows.

There could also be a sense of helplessness, but it is normal and you would be able to overcome it with time.

While Mourning A Death:

It is difficult to cope with the loss of a loved one. Mourning and grieving are general ways of expressing the loss of someone you were closely attached to. While mourning can go on personally for a long period of time, grieving can be more physical, emotional and psychological.

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Crying, for instance, is a physical expression that follows a tragedy like death, while depression is more of a psychological expression. It is very important for us to go with the flow of these expressions and not try to suppress or deny them, since if you do that, you can face severe mental illness in the days to come.

Physical Symptoms That Occur Because Of Grief:

Physical symptoms are seen in many people in times of grief. For example, loss of appetite, sleep disorders, loss of energy, stomach pain, etc., can be natural occurrences. Excessive grieving can make you fall sick – both physically and emotionally.

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Reactions To Loss:

As mentioned earlier, loss of a close one can cause a severe emotional stress in us and the reactions generally include anxiety, chronic fatigue, depression and even suicidal tendencies. Obsession with the mortal remains of the dead can also be a common reaction. Reactions to a death are also influenced by the nature of relationship you’ve had with the deceased – be it your parents, spouse, child, sibling, friend, etc.

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How To Deal With A Personal Loss:

We need to take care of our mental health while coping with the death of a loved one or else it might take a toll on us.
Here are some ways to cope with the pain caused by a personal loss:

1. Divert Your Attention: In times of grieving, try to think less about the person you lost – the memories you shared. Though easier said than done, it is the most effective way of overcoming the grief. Meet friends, join support groups and platforms where you find people undergoing similar experiences.

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2. Express Your Feeling Instead Of Personalizing The Experience: It will make you lighter and help you manage the grieving phase better.

3. Take Care Of Your Own Health: Do not become dependent on alcohol or medicines to get rid of the depression. Eat and drink healthy and have proper rest. Consult your family physician regularly and if required, take help of a psychiatrist for counseling.

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4. Accept That Life Has To Change: Accept life as it comes and start living in the present and not past.

5. Do Not Overstress: Do not overstress yourself when you are going through a traumatic phase, either personally or professionally. Take a break. Go to a place of your choice to regather yourself.

Comforting Others At The Time Of Grief:

You may find somebody else grieving over a personal loss. You can step in to help them assure themselves. You can do so by:

1. Sharing the sorrow and by encouraging them to express their feelings.

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2. Being choosy about words. Don’t offer an artificial comfort by saying “what had to happen, happened” or “I can understand your pain”. Personal pains are not easy to understand and instead of giving such comfort, it is better to help a person in grief realistically.

3. Giving the bereaved person a considerable time to overcome the pain and grief. Remember, recovering from an emotional pain takes time.

Complete Article HERE!

How a death doula can help patients and families in end-of-life transitions

By Debra Kaszubski

While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.
While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.

Doulas have typically assisted women during childbirth, or to support the family after the baby is born. But recently some doulas have shifted their focus to helping dying patients and their families.

Merilynne Rush and Patty Brennan, alternative health professionals, will offer Michigan’s first end-of-life doula training Nov. 18-20 in Ann Arbor. The sessions are geared for family members and friends of the dying, hospice and palliative care workers, midwives and doulas, clergy, therapists, life coaches, and anyone interested in preparing for their own death. It is not recommended for the recently bereaved.

While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families.

Death doulas typically have experienced loss and want to encourage conversations and decision making about dying so patients and families can make their last days and the bereavement process more meaningful.

Each doula’s services are tailored to the specific needs of each patient and his or her family. They can include helping to create a death plan and caring for patients whether in a hospital or at home. Death doulas provide spiritual, emotional and psychological care to patients and their families, and can help plan home vigils and funerals.

Fees for their services also vary widely; some charge per hour, others offer packages for specific services, and some work on a volunteer basis or waive their fees for families who can’t afford their services.

“As more and more of us live longer and face chronic and life-limiting illness, the period of dying has extended from a few days or weeks to months or years,” Rush said. “Medical care focuses solely on cure and treatment. Patients often feel adrift among medical choices while grasping for ways to live with illness in full awareness that death will come. Life choices include acceptance, growth and sharing gifts of love and preparation. There is much meaning to be found during the dying year that is profound and life affirming.”

Deanna Cochran, a former hospice nurse from Austin, Texas, became an end-of-life doula after her mother’s death. She now works with patients who call on her to help them write advanced directives, plan funerals and prepare their family for their passing.

Cochran notes that death is a topic many people continue to feel uncomfortable addressing with their loved ones. Doulas can break the ice and serve as an impartial third party who facilitates conversations about end-of-life wishes.

“I started my private practice to help other families have the same end-of life experience that my mom had,” Cochran said. “My mom didn’t want to die in a hospital. She got to stay in her home with her family and dog and to remain comfortable, despite having an aggressive cancer.”

During the training sessions in Ann Arbor, participants will attend several workshops: assessing the needs of the dying, what is “good death,” how to hold a vigil, hands-on comfort measures, and working with the hospice and palliative care team, as well as doula practice considerations. Day three covers how to have a home funeral, a normal extension of hospice care which brings healing and comfort to friends and family through hands-on involvement in care of the body after death.

The event takes place at the Center for the Childbearing Year, 722 Brooks St. in Ann Arbor. For information and to register, visit center4cby.com.

Complete Article HERE!

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

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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!

When a friend dies, what do I say to the family?

By

sympathy

[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 Observeda 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.

Complete Article HERE!