What Is a “Good Death”?

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[T]hese days, everyone from poets to professors, priests, and everyday folks all opine about what makes a “good death.” In truth, deaths are nearly as unique as the lives that came before them — shaped by the combination of attitudes, physical conditions, medical treatments and people involved.

“A good death can, and should, mean different things to different people,” says Haider Warraich, MD, author of “Modern Death – How Medicine Changed the End of Life.” “To me, it means achieving an end that one would have wanted, and that can really mean anything – from being in the intensive care unit, getting all sorts of life-sustaining therapies, to being at home, surrounded by family, getting hospice care.”

Still, many have pointed to a few common factors that can help a death seem good — and even inspiring — as opposed to frightening, sad, or tortuous. By most standards, a good death is one in which a person dies on his own terms, relatively free from pain, in a supported and dignified setting.

“I think what makes a good death is really different for every individual, but there are some common threads that occur with each person I’ve seen,” says Michelle Wulfestieg, executive director of the Southern California Hospice Foundation (SCHF) and author of “All We Have is Today: A Story of Discovering Purpose.”

Some of patients’ most common end-of-life priorities include being at peace spiritually, knowing that they have the support of loved ones, having their affairs in order and being reassured that they won’t have a painful death, says Wulfestieg, who has worked in hospice care for 14 years.

Having affairs in order

Not everyone has the luxury of planning for death. But those who take the time and make the effort to think about their death in advance and plan for some of the details of their final care and comfort are more apt to retain some control and say-so in their final months, weeks and days.

Legal specifics of such planning can include taking steps to get affairs in order by:

For those considering hospice care at the end of life, another crucial end-of-life planning step is to elect the hospice benefit under Medicare, notes Joseph Shega, MD, national medical director for national hospice care provider VITAS Healthcare. He points out that hospice care is covered by Medicare, along with most health insurance providers.

Richard Averbuch, Executive Director of the Massachusetts Coalition for Serious Illness Care, cautions not to wait until a serious illness or crisis before planning for end-of-life care.

“The best time to name a proxy and talk about your preferences is now – whatever your stage of life. Think of it as part of your overall wellness program – just as important as preventive care, an exercise regime, and a good diet,” he says. “And you need to revisit the conversations periodically, since your feelings may change as you age or as your health status changes.”

Controlling pain and discomfort

Most Americans say they would prefer to die at home, according to recent polls. Yet the reality is that some three-quarters of the population dies in some sort of medical institution, many of them after spending time in an intensive care unit.

Part of that may be due to misunderstandings about the different options for treating a patient’s pain in their final days.

“There are still people who are uncomfortable with the use of pain medications at the end of life, even as their use is essential for the patients who are in pain,” says Warraich.

As life expectancies increase, more people are becoming proactive. A growing number of aging patients are choosing not to have life-prolonging treatments that might ultimately increase pain and suffering — such as invasive surgery or dialysis — and deciding instead to have comfort or palliative care through hospice in their final days.

Ways to help ensure a “good death” on an emotional level

Along with the practical matters of having one’s affairs in order, it’s equally important to prepare for death emotionally, to spend time with loving people toward the end of life, and to have spiritual sustenance.

Having few regrets

“Patients really want to know that their life had purpose, that they made a difference and that their lives mattered,” says Wulfestieg. “It has to do with family a lot of times, saying those I love yous and goodbyes.” The SCHF often works to reunite dying patients with family members,

including those who have long been estranged.

Often quoted among hospice care providers and in the literature on death and dying are the tenets in “The Four Things That Matter Most“, by Ira Byock, a medical doctor who professes the need for a dying person to express four thoughts at the end of life:

  • I love you.
  • Thank you.
  • I forgive you.
  • Forgive me.

At the time Caring.com spoke with Wulfestieg, her organization was preparing to reunite Marilyn, a woman with ovarian cancer and only a few weeks to live, with her three estranged adult children and grandchildren.

Due to Marilyn’s problems with drugs, alcohol and crime, all three of her children grew up in foster care, and she’d lost contact with them. Her dying wish was to have a family meal with her children and grandchildren, so SCHF have arranged to fly out Marilyn’s family members to make it happen, Wulfestieg says.

“That’s really her dying wish, to be able to say ‘I’m sorry, I love you and goodbye,’” she says. “It’s really a story of grace and forgiveness and hope.”

Receiving mindful care and support

The right company can help aid a “good death.” Although dying may be scary or sad or simply unfamiliar to those who are witnessing it, studies of terminally ill patients underscore one common desire: to be treated as live human beings until the moment they die.

Most also say they don’t want to be alone during their final days and moments. This means that caregivers should find out what kind of medical care the dying person wants administered or withheld and be sure that the medical personnel on duty are fitting in skill and temperament.

“Before health care decisions around end-of-life care can be delineated, clinicians and patients must first recognize when life-limiting conditions such as heart failure, lung disease or cancer are no longer responding to disease-modifying treatment,” Shega says. Next, he says, there should be “a conversation between the patient and clinician about end-of-life care and the role of hospice.” He adds that care teams need to provide ongoing support to the patient and their loved ones throughout their final days, “never abandoning the patient and respecting their choices.”

Favorite activities or objects can be as important as final medical care. Caregivers should ascertain the tangible and intangible things that would be most pleasing and comforting to the patient in the final days: favorite music or readings, a vase of flowers, a back rub or foot massage, being surrounded by loved ones in quiet or conversation.

Spirituality can help many people find strength and meaning during their final moments. Think about the patient’s preferred spiritual or religious teachings and underpinnings, since ensuring access to this can be especially soothing at the end of life.

Complete Article HERE!

Grieving Santa Rosa family reclaims old ways, brings son’s body home to say good-bye

By MEG MCCONAHEY

When Carl Hamilton got the news that every parent dreads, his fatherly instinct kicked in. His son Chris was lying alone at the Sonoma County Coroner’s Office, the victim of a middle-of-the-night car crash. Against all modern convention, Hamilton decided he would not send his firstborn to a mortuary. Instead, he claimed the young man’s body and drove him home.

For three days and two nights Chris Hamilton lay in a simple hand-assembled wooden box in his parents’ Santa Rosa living room. Friends and family gathered beside him, experiencing their grief within the same modest tract house where Chris, a Giants and Green Bay Packers fan and Le Cordon Bleau-trained cook, had grown up.

They talked, shared stories, brought mementos and totems and shed tears. Carl Hamilton and other family members slept in the living room to be near their Chris, named for the storybook character Christopher Robin. In his 35 years, he had grown into a burly man of 6-foot 2 with a big smile, a wicked sense of humor and a compassionate heart.

The Hamiltons opted for an old-fashioned wake or home viewing, where a family spends intimate mourning time with their loved one. These kinds of funerals were once a common practice in American homes, often with women in the community assisting in “laying out the dead.” But with the increasing popularity of embalming and the professionalization of the funeral industry, family death rituals began to change.

At a time when most people “make arrangements” with a mortuary to deal with remains, the Hamiltons dialed back to the old ways in caring for Chris themselves. They oversaw every step, from making his box in the family garage and adorning it with art and messages, to transporting him to the crematorium where they sang songs and held their own service before bidding him good-bye and pushing his box into the flames. Virtually the entire family — three generations — participated.

“I wanted to slow things down. I hate funerals, the ones I’ve been to. I wanted my son home,” said Hamilton, a longtime director in community theater and currently a drama teacher at Cardinal Newman High School.

Soothe broken heart

It was, he reflected, like another production but one that, in its way, helped soothe his broken heart.

Just as women began reclaiming childbirth from strictly clinical hospital settings to home births, natural childbirth and birthing centers, an increasing number of people like the Hamiltons are reclaiming death rituals in ways that are more personal. It’s spawning a niche of services and products for home funerals and green burials, from shrouds to body oils to biodegradable boxes and urns. Increasing numbers of people are craving more control of the mourning experience, and see it a more normal way of dealing with the remains of a loved one, and a healthier way of experiencing their grief.

“I think we’re still just at the tip of the wave,” said Jerrigrace Lyons, who in the 1990s founded a group called now called Final Passages, to educate people about how to do their own home funeral and to provide support. The Sebastopol advocate is now a part of a larger organization, the National Home Funeral Alliance, which has grown to include members throughout the U.S., Canada, New Zealand and Great Britain.

“Death is a very emotional experience, a very powerful rite of passage and people want support at that time, and they should have it,” said Lyons, who sees her role as akin to the doulas who provide lay support during childbirth.

Most people who opt for a home funeral have had time to think about and take conscious steps as they or a loved one is dying. But for the Hamiltons, there was no time to weigh the pros and cons, come up with a plan or poll everyone in the family.

A missed plane

Fate in the form of a missed plane flight put Chris Hamilton on the road that led to his death.

The week he died he was supposed to be in Italy on vacation with his mother, Frances Hamilton, and his sister, Isla. But at the airport he walked away from the gate and didn’t make it back in time to get on the plane. That was Monday. He was hoping to catch another flight as early as Wednesday. But in the wee hours of the morning that day, Oct. 25, he was driving north on Highway 101 near the Highway 12 exit in his VW Golf when he slammed at 50 miles per hour into a tractor trailer that had been abandoned in the roadway. There were no skid marks, so investigators believe he must not have even seen it ahead. He died instantly; his small dog Davy survived.

“They found his phone in his back pocket so they didn’t find any distracted driving. No drugs or alcohol was suspected,” the father said.

Hamilton, 62, had actually driven past the accident on his way to work, not knowing it was his son. But he felt uneasy since Chris, who had been living with him and his wife Jamie Smith for the last couple of years, hadn’t come home that night or responded to a text. He even drove to his ex-wife’s home hoping Chris would be there. No one answered the door.

Jamie, who had helped raise Chris since he was four years old, was notified after daybreak by coroner’s officers who came to the door and left her with a list of mortuaries and directions to pick one. They said they would deal with everything else. Jamie was unable to reach her husband by phone in the chaos amid the Tubbs fire that was still smoldering. He had just been relocated to a temporary campus site after parts of the Newman campus burned. Deputies left a message with the school to notify Hamilton that he needed to go home for an unspecified emergency.

Jamie had “that awful conversation” with her husband as he pulled into the garage shouting “What’s wrong?!”

The couple wanted to see their son immediately, but were told he was not viewable. Hamilton spent hours contemplating what to do. He had read stories about people who had home funerals. By early afternoon he announced he wanted to bring Chris home.

Jamie said her sister tried hard to persuade her “that it would be a mistake we would regret, but Carl was steadfast.”

Jamie had her own reservations. Would people think they were weird?

Son Dylan Hamilton, 22, a filmmaker in Santa Fe, assured her that the Hamiltons, a theatrical family, are a little weird.

“This is who we are,” he said. “We do things a little differently. We’re a little off kilter and it’s important we keep doing things that way. This was the perfect thing.”

To his grandmother Pat Hamilton, 87, a home viewing was perfectly normal. She remembers when she was 16 and her grandma was laid out in the living room.

“We were close to her. We could see her. She wasn’t alive anymore but she was grandma.”

Jamie immediately got online and found Grace, a pioneer in the revival of home funerals, who helped them through the process.

Help with paperwork

Home funerals are legal in all 50 states. Grace navigated them through getting a death certificate, the application process and permit for the disposition of human remains that is required to transport a body.

The coroner took a week to release the body pending an autopsy. In that time the Hamilton’s put together their plan.

The decided they wanted an old-fashioned wooden box that they could decorate themselves, and then use to cremate Chris.

“A coffin connotes to me, this big, shiny massive thing with rails. It just seems so impersonal to me and not at all like who Chris was or what we are as a family, Jamie said. “We’re way more down-to-earth than that. I couldn’t imagine putting my kid in some weird steel container and giving him to somebody.”

She found a company online that sold simple Wisconsin pine boxes with rope handles, something meaningful to Chris who enjoyed visiting his grandparents in Wisconsin. Other natural caskets are available in materials like willow, seagrass and bamboo.

She paid almost $800 for the box and almost as much to have the 100-pound package rush shipped. It arrived in a kit on Monday. Family and friends were invited to come over and help with the assembly and decoration. Chris’s younger brother Darius Hamilton-Smith, 27, a lighting and set designer in Los Angeles, headed up the effort.

It was a sunny day and a buddleia in the yard was filled with butterflies, something that almost never happens. The family reached for humor in their sadness.

The Hamiltons shared a love for the quirky movie “Little Miss Sunshine,” in which a dysfunctional family steals the body of their dead grandfather from a hospital and drives off with him in their VW van so they won’t miss a beauty pageant. Jamie mod-podged a picture of the scene onto the coffin and wrote, “We didn’t leave you behind.”

Darius bought a “blank” from a local shop that makes custom baseball bats and turned it himself, giving the bat a trial run with a few hits before placing it with his baseball-loving brother in the box.

The elder Hamilton said he felt it was an important part of the ritual that he pick up his son himself, and he still feels the weight of his 250-pound body as it was lifted into the box. The coroner was adamant that the body was not in a condition for viewing. But Carl wanted to touch his son. Grace peeked in the bag and found a hand that was unharmed and that became something for people to touch during the wake.

Grace offered up her Toyota van to drive Chris home for the last time. He was laid out on the kitchen table, his blue body bag covered in a beautiful piece of fabric the Hamiltons had saved from a Shakespeare Festival.

“It felt really good,” said Jamie, “just holding his hand.” Grace showed them how to pack the unembalmed remains in dry ice. The room was adorned with photos and mementos, from t-shirts to Chris’s favorite Gummy candy to a logo plate from the old BMW his grandfather had given him and that he adored.

Many farewells

Some 50 friends and family members came by over a three-day period to draw or write on the box or leave a gift. Someone brought a hummingbird, a Native American symbol of peace, love and happiness. His sister, Isla Hamilton, wrote him a letter, sealed it and placed it in the box. Jamie’s sister sewed a pocket from lavish fabric and tucked a letter inside. Another sister made a “flower arrangement” out of wooden cooking utensils in salute to his work as a cook. Carl added a knife that a Navy SEAL friend had presented to him years before in recognition of his courage, and that he had given Chris when he left home to move to Colorado.

For those days, time was suspended and their home became a safe and intimate container for their grief.

”We agreed we would just let each other do what we needed to do and we ended up crying and bawling and hugging each other,” Jamie said. “Sometimes we just found ourselves standing and holding his hand for a half hour.”

The family stayed together throughout each step in the ritual. They took him together to the crematory at Santa Rosa Memorial Park and held their own little service.

“This wonderful friend of ours brought this beautiful glass mason jar. In it was dirt, leaves, rocks and all kinds of things. Then she wrote out this piece of what everything meant,” Jamie said. “It seemed so perfect. As we stood in front of the big shiny oven with his casket, Carl read it and I handed each piece to Frances, (Chris’s biological mother,) who put each piece in the box. It was beautiful.”

They sang songs — “The House at Pooh Corner” by Kenny Loggins and “Learning to Fly” by Tom Petty.

“We all said something,” Carl said. “We put the lid back on the box and we all pushed him in.”

Chose an urn

While they waited for his cremains they played catch outside with an antique glove that Carl had given his son one Christmas. Then they drove to Funeria, an art gallery in Graton that features unusual and handmade urns. They picked a piece by Seattle sculptor Tony Hopping, a primitive human-like form made from wood salvaged from the Russian River. It spins on a potter’s wheel.

“The moment I saw it, the joy and energy of Chris jumped at me. Each morning I will spin his ashes to get the day started with a smile,” Carl wrote on his Facebook page, where he continues to pour his feelings, his grief and his memories of his son, with art, photos and poetry.

At the crematory they stood vigil as a kind man with flames tattooed on his arms, carefully removed the ashes, sifted them and handed them back to the family. They held a joyous celebration of Chris’s life at the Bennett Valley Grange a week later.

As hard as it was, the Hamiltons nearly five months later remain united in their belief that mourning at home with Chris was the best choice for them.

“Going through all those steps ourselves was therapeutic, and very helpful in the grieving process,” Chris’s brother Darius said. “It wasn’t like Chris was out of sight and out of mind. And instead of just sitting around and doing nothing, there was always something to do.”

Carl said he took comfort in reclaiming the old ritual of spending time at home with a lost loved one, as well as inventing new rituals that felt right for his family.

“There were lessons learned by going through those rituals,” he said. “In taking time and talking with people and really listening, you get to the bare guts.”

Complete Article HERE!

What is the best way to explain death to a child?

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[T]he popularity of bestselling memoirs such as When Breath Becomes Air and The Bright Hour, both meditations on death by authors who died young, suggest that death is a topic many of us like to think about (while alone, reading silently) – yet, it is still a subject many of us are woefully bad at talking about, particularly when it comes to discussing it with kids.

We all need a better “death education,” says Dr. Kathy Kortes-Miller, an associate professor of social work at Ontario’s Lakehead University and author of the new book Talking About Death Won’t Kill You: The Essential Guide to End-of-Life Conversations. Like a new website launched last November by the Canadian Virtual Hospice, the book takes what remains a taboo subject and shows how to talk about it openly and honestly. The Globe and Mail’s Dave McGinn spoke to Kortes-Miller about having that conversation with children.

Why do we have such difficulty talking to children about death?

As parents we are cultured and conditioned to protect our children. Our generation, we didn’t really learn how to talk about it. Before I was a parent, I was really good at talking to children about dying and death. And then I became a parent myself and found that it was a lot harder than I thought it was.

What’s the risk of ignoring the subject, or not bringing it up unless they do?

It keeps it as an unknown and as a scary and almost a taboo topic. We [need to] recognize that this is a transition event in our life and one that we can prepare for and one that we can learn about, and by doing so, that’s going to help us to live life more fully and prepare ourselves for the end of life.

What is the best way to explain death to a child?

It depends on the age of the child, of course. But one of the ways to do it is by looking around at nature. Kids are inquisitive. They’re interested in how things die and what happens to them. So often they’ll see things in nature and ask questions. Those are really good ways to get the conversation started. As they get a little bit older they start to watch TV and they start to read books. There is a lot of dying and death in media that children are exposed to, and those are also really good conversation starters.

You mention that nature often presents an opportunity to talk about death. I’ve been guilty of telling my kids a dead squirrel they saw was just sleeping.

That’s an easy one to do. We’re almost scared to use the D words – dead, dying and death. But we confuse them if we use euphemisms. Having worked with young kids in a counselling role as a social worker in a hospice unit, when we talk about “oh, grandpa’s just gone for the big sleep,” instead of he’s died, kids get nightmares. Kids don’t want to go to bed at night because grandpa went to sleep and he didn’t wake up.

When a child wonders what death is, is there a good description of the physical process that won’t scare kids?

I would sometimes talk about it from a physiological perspective. The reality is that sometimes we get really, really sick or we get old and our body no longer functions the way we need it to, and as a result, some of the things such as our heart or our brain stop working, and as a result, our body dies. It stops working. And that’s kind of the way I would begin that conversation. I would leave it then on the young person to ask some questions, to see what they want to know more about.

You say in the book that bedtime can be a good time for these conversations. Why?

Bedtime can be great depending on the age of your child. Often, there are rituals and time spent at bed reading books and tucking in and doing all that stuff, which is a great time to have conversations. As children get older and we move in to more of what I call the chauffeuring ages, car-time conversations are really good too, particularly because the kids don’t have to make eye contact.

Is there a euphemism for death that you loathe most?

One that’s probably most common is the idea that people “pass away.” I talk about this story of Sam in the book when he got really confused because he was in school and in school they talk about passing to the next grade, and the only person he knew who had passed was his mom. So that one I think particularly for children is a big one.

Kids usually seem capable of processing much more than we give them credit for.

Yes. For sure.

Helping a child or teenager who is grieving the death of a parent or loved one is always difficult. What do you tell them? How do you help them understand matters? The Canadian Virtual Hospice recently launched a website, KidsGrief.ca, to help answer those questions. It is especially important to talk to young kids about the four C’s, says Andrea Warnick, a Toronto-based registered psychotherapist and co-lead on the project.

“The four C’s are four common concerns that kids have when either somebody’s seriously ill, dying or has died in their life. We’re really trying to encourage families to address these even if kids aren’t bringing them up,” she says.

  • Cause: Am I some way responsible? “A lot of parents are really surprised when they find out that their child has been thinking that they did something to cause the illness or death in their family,” Warnick says. She has worked with children who thought their mom got throat cancer from yelling at them to clean their rooms. “We really want families to let their kids know that this is not their fault, they did not cause this in any way,” she says.
  • Catch: “A lot of families will avoid the word of the actual illness. So as opposed to saying, ‘Daddy has cancer,’ or ‘Dad has ALS,’ they’ll say, ‘Daddy’s sick.’ And for kids whose reference for sickness is that it gets spread across the daycare, or one person gets the flu and then the next person does, that scares them and they often think it’s going to happen to them to or they can catch it,” Warnick says. You can still hug your dad, still kiss him. You can still cuddle.
  • Cure: You have to let your kids know they can’t cure it. “This is not in their control,” Warnick says. “A lot of kids will use the power of their imaginations to come up with pacts, promising a higher power that they will never fight with their mom again if they cure them, and then of course they fight. I’ve had a number of kids feeling very responsible that they did something that could have happened otherwise.”
  • Care: This is one of kids’ biggest fears. “If there’s a parent or a primary caregiver who is ill or dying, who is going to take care of me?” Warnick says. Or if the person has already died, is this going to happen to my other parent or whoever it is who is now taking care of them? “A lot of kids are really worried about that. And that’s where we really walk families through how to talk about that. Some families are tempted to say no, it won’t happen to me. And we can’t promise a child that. So we really encourage families to say: Most likely I’m going to live to be very old, but if anything does happen to me, this is who is going to take care of you. Hopefully, guardians are picked out. Let them know what the plan is.”

Complete Article HERE!

I Am Dying From Terminal Cancer.

Here’s What It’s Taught Me About Living.

Susan, with her hair mostly out from chemo, and her sons Oliver (left) and Nathan (right) at Nathan’s graduation from the National Circus School (background).

By Susan Briscoe

[S]parkling bright and eight months pregnant, my French-speaking surgeon in Montreal, Quebec, was perhaps more direct than she would have been in her native language. She’d just removed my uterus and everything else that I could spare from my abdomen, but she was reporting on what she hadn’t been able to remove of the sarcoma that had, in just the weeks waiting for surgery, spread beyond hope in my belly.

“You will die of this,” she told me matter-of-factly.

Chemotherapy, she said, might give me a few more months if it worked, but those chances were small. So, I consider myself pretty fortunate to still be here a year later.

Pre-diagnosis, I had just turned 50 and was extremely fit, healthy and happy. Nobody could keep up with me! I was excited about life. It had occurred to me that, with my family’s excellent longevity genes — and some good luck — I might very well live another 50 years. I was enthused about the 30 years’ worth of creative activities and research projects that I had ambitiously sketched out for myself. Both my sons, also healthy, happy and on-track, had moved out on their own; and after more than 20 years of solo parenting, I was ready for a little more fun. Deeply aware of and grateful for all the privileges that made my wonderfully full life possible, I figured I had had more joy in life than most would ever have.

But I didn’t get the good luck part, so now I am going to die.

And that is okay.

That was the first thing I told my loved ones. My boyfriend. My parents. My two boys. “I have a very bad cancer. I’m not going to be around much longer. It’s okay.”

They looked so hard into my eyes, gripping my hands, tears streaming down their faces, as I told them this. When I got to the “okay” part, they nodded. They knew I meant it. I was okay. It was okay. They were going to be okay.

Susan getting chemo.

These conversations, especially the one with my boys, were the hardest I’ve ever had. The image of my sons sitting at my hospital bedside and simultaneously dropping to their knees in grief is seared into my mind. Yet these conversations were also the most beautiful I’ve ever had. Though it was terrible to bring them so much pain, I have never felt anything like the outpouring of love we shared in those moments. And it wasn’t long ― that same visit, in fact ― before we were also laughing.

So, one of the first things my diagnosis taught me was that, as much as my dying meant tremendous loss, it also meant receiving gifts of unimagined beauty and joy and love, not just for me, but for my loved ones too.

Many people I meet have imagined me in a state of pure devastation and distress at my diagnosis. Loss brings grief; and because grief is painful, like everyone else, I try to avoid it. But the flip side of grief is gratitude for having had whatever is lost to begin with. I have learned that, to a surprising degree, I have a choice about which side to focus on. I could be sad about all I won’t experience in life ― becoming a grandmother is one of the hardest for me ― or I can be grateful for all the gifts, like my wonderful boys, that I was given and fully appreciated. Choosing a state of gratitude has allowed me to remain happy and even joyous in this time. Yes, there is still grief, but the tears are fleeting, and lately rare.

The Death Project is a blog where I journal about my life with terminal cancer. I wanted people to know that dying doesn’t have to be as bad as we fear.

Talking and writing openly about it has enabled my loved ones and I to feel okay. (My son and a dear friend have contributed to my blog, while my boyfriend has a companion blog and has also written about our relationship for HuffPost.)

It is my hope that our writing will help others face death with less fear and anguish. I always want to say, “it’s not the end of the world!” — though, of course, it sort of is.

Humor has also been a huge help. “I can’t lose my mom and the X-Files in the same year!” my son said in mock despair after he was nearing the final episode of his favorite series on Netflix. His girlfriend was aghast, saying “Too soon!” But it wasn’t too soon for the rest of us.

Allowing ourselves to embrace and even delight in the absurdities of life that can bring anything at any moment has lightened our sadness. It’s also a way into difficult conversations. It’s been hard for my boyfriend to talk about his future without me, so I joke about him bringing a date to my funeral. We agree that he should not be swiping through Tinder during the service ― though it would be fun to compare results before and after his eulogy.

Being so open about my terminal diagnosis was easy for me partly because I was able to accept it immediately. And acceptance was possible because all my life I have been thinking about death and making peace with it instead of fearing it. Having to die when I am still full of vitality has never felt unfair to me. Nor is it a surprise. Death was always part of the deal. And I wanted to be ready whenever it came.

The essayist Michel de Montaigne tells of the skeleton guest at celebrations in ancient Egypt, reminding revelers that there is never a time when death cannot visit, invited or not. And I have heard of another people who keep their own caskets by the front door as a reminder of their own mortality. I like the idea of such memento mori, like a discarded tombstone I once brought home during my youth after visiting a graveyard. I can see now how coming to terms with mortality has been worthwhile not just for the chance moment of a dreaded diagnosis: death has also taught me important lessons about how to live.

Death has shown me that when I am living the life I am meant to live, I am giving. When I discovered I would die sooner rather than later, my most urgent concern was that I didn’t have long to give all I had to the world. On a practical level, this meant getting my affairs in order: a lot of work since my will needed updating. Amid that long and tedious process, I wondered how people managed to die suddenly. There was so much to do!

But giving is much more than a list of bequests. I have also given to society through my teaching job, volunteer work and charity. But most importantly, I continue to give of myself. In my personal relationships, this means my affection, my compassion, my friendship and my love. I’ve had to remind my boyfriend that just because I’m the one who’s sick doesn’t mean I can’t still take care of him at times. Since he is jealous of our cat, I try to favor him with the head rubs. I love to give a smile to strangers, knowing many will pass it on. I try not to give unwanted advice to my sons, but I keep failing. And they still won’t dress warmly! There are so many ways to give: a word of encouragement; a compliment; any act of kindness, however small or brief. I want to give as much as possible, and not just to my dear ones but to everyone, to the whole dear world that I have loved so much.

But giving sometimes triggers grief when I know these opportunities are coming to an end. Like the 4:30 a.m. ride to the airport that I offered my younger son when he was nervous about missing his flight for his first professional tour as a circus performer ― the last ride I figured I would ever be able to offer him. Turns out, he slept through the doorbell, through my texts and phone calls, and through his circus partner’s texts and calls. I ended up pounding on his door until I finally managed to rouse a roommate who let me in to find him still soundly sleeping. We both knew it was the last time I would be able to rescue him. Losing his mother means growing up faster than he might have otherwise (though we also both know that in less practical terms I will always be there for him). He’s going to be okay.

I am aware too that my giving will have to switch to receiving as my disease progresses. Learning to ask for and accept help has been the hardest challenge for me, accustomed to being the competent, independent caregiver myself. Trusting others to load the dishwasher properly is still a struggle! But I remind myself that giving others the opportunity to give is also a gift.

I know there can be no regret in a life lived giving in this way. Though I’m not particularly concerned about immortality, I can also see how it resides in this giving: much of what I have given will still be there in the world when I go. That is what lives on. And the most powerful of those gifts, the one that surely never dies, is love.

So how do I live while dying? Ideally, the same way I have lived my life.

Susan on her 50th birthday

Complete Article HERE!

Helping Children Come to Terms With A Death In The Family

We often try to shelter our children rather than help them address the loss of a parent, grandparent or family friend


One of the biggest mistakes people make is waiting too long to tell a child a loved one is dying.

By

[W]hen a child is facing the death of a loved one, our first instinct is often to try to shelter them. Unfortunately, following that instinct may do more harm than good.

One of the biggest mistakes people make is waiting too long to tell a child a loved one is dying, says Andrea Warnick, a Guelph, Ont. grief counsellor with more than 20 years’ experience.

Warnick says she understands the reluctance. It is difficult to tell the children — except it is usually worse to say nothing, in part because kids will often use their imaginations to fill in the unknown details, which may be even worse than reality. And they will often blame themselves.

“It’s never too early,” Warnick insists. “You don’t need to wait for absolutes.”

You can simply say that the doctors are concerned that Mom could die, she says, by way of example. Kids need to feel that they can trust the adults in their lives to be honest with them, which is important for resilience.

“It’s better for them to find out from those who are closest to them,” she continues, adding “there’s less anxiety when they know what’s going on.”

And when children have only one parent left, it’s important they know what the plan is if the remaining parent dies.

Warnick cautions against waiting for children to bring the subject up. She says it’s the adults’ responsibility to open the conversation because children will try to protect parents by not bringing it up.

When talking to children, use clear language. “Don’t just say, Mom is sick. Call the illness or condition by its name. Avoid using euphemisms for death and dying. Don’t say we lost Grandpa or that Grandma is in your heart. “Kids can be very literal,” Warnick says.

With teenagers it can be easier to talk when they are in a car or when doing another activity such as going for a hike or doing a puzzle. “It doesn’t need to be a matter of ‘We are going to sit down and talk,’” she explains.

On the other hand, she advises against forcing children to talk. Let children take the lead on how much they want to know, she says. “Encourage them to ask questions and share concerns but let them know they are allowed to say ‘pass’ if they don’t feel like talking.”

Warnick isn’t surprised that many of us don’t know how to support someone, child or adult, who is grieving. She doesn’t mince words. “Ours is a death-denying and grief-illiterate society,” she says.

Her travels have taken her to other countries such as Botswana which have a rich story-telling culture and people freely share stories about their ancestors.

There is a misconception that you get over a death and move on, says Warnick. “We think we’re doing it wrong if it comes up again,” she says. “But this is natural… kids grieve in chunks. They will revisit it as they develop.” Children will also experience joy in between the sad times, and that’s okay too, she says.

Warnick adds that it’s okay for adults to cry in front of the children. This models a healthy grief response.

Another mistaken belief is that death ends a relationship, continues Warnick. “A child whose father has died still has a dad. Don’t try to sever the connection,” she says. Instead, children can be encouraged to participate in rituals or activities that memorialize the person who has died. For example, on the birthday of their loved one who has died, Warnick knows of one family who do “one act for the earth” in his memory because that was important to him.

Warnick attributes her own interest in helping those who are grieving to the death of her aunt when she was young. Warnick’s cousins were just children when their mother died. Once they were adults, they wanted to know more about their mom so they invited family and friends to share their memories on the 20th anniversary of her death. They were comforted by the outpouring that came from friends and family who were glad of the opportunity to remember her.

When an infant dies, people often struggle with how to best support the family. “The significance is often not recognized by society,” says Warnick, who points out that part of the grief is for the “unlived future.”

However, Warnick insists it is still possible to create meaningful rituals to express the grief, although it may require being creative. For instance, you can light a candle in memory of the child and talk about how you wish he or she was still here. “Families can nurture the relationship and hold space for the part that is not physical,” she says.

Grief is messy and involves many emotions including anger, fear, loss of confidence, shame, and guilt. It is non-linear and you don’t get over it in a few months or a year, emphasizes Warnick, who also cautions against praising children for “being strong” for holding in their emotions. This sends the wrong message to children who should feel free to express themselves.

If children cry, adults shouldn’t feel the need to fix it. “You can bear witness to their feelings by listening to them. The goal is not to fix the heartbreak. It’s to learn how to live with a broken heart.”

Strategies for supporting children who are grieving

When you want to talk to a child about a difficult subject, start by creating an appropriate space with minimal disturbances. Get on the same level as the child.

Begin by asking what the child understands. “I’m wondering what you understand about what happened…”

Ask if the child has overheard anything he/she didn’t understand. “I’m wondering if you’ve heard other people talking about any information that’s confusing to you?”

Words are powerful. Use correct terminology. Call the illness or condition by its name. Avoid euphemisms for death.

Don’t praise someone for “being strong.”

Don’t try to sever the connection with the person who died.

Encourage kids to ask questions or share worries.

Answer honestly using simple, concrete language.

Be honest when you don’t have the answer.

Explain that grief is a natural response and not a problem to be solved.

Let kids know it’s okay to feel happy and still enjoy life even when they are grieving.

Signs that more support is needed

Seek out a counsellor if there are signs of:

  • Self-harming behaviour
  • Suicidal thoughts
  • Chronic physical symptoms
  • Panic attacks
  • Sleeping/eating disturbances
  • Risk-taking behaviour

Kid-friendly explanations

“Dead means that a body has stopped working and will never work again. The body cannot move, breathe, think, feel, see, smell, talk…The body does not feel pain or hunger or fear.”

“Suicide is when a person causes her or his body to stop working. The body dies.”

Warnick prefers to say that a person died from suicide rather than committed suicide.

“Cremation is when a dead body is put through very high heat causing it to break down into small pieces that look like sand/dirt.”

Grief is all the different feelings and thoughts that occur when something really difficult happens in life. It can include anger, guilt, shame, loneliness, resentment, sadness, fear, regret, etc.

Address the four Cs

Children will want to know:

Did I Cause it? Can I Catch it? Could I have Cured it? Who is going to take Care of me?

Complete Article HERE!

Inside the Bangkok temple where dogs are given human funeral ceremonies to speed their rebirth

Thailand’s bereaved pet owners who take their dearly departed dogs to Wat Krathum Suea Pla, a temple on the outskirts of Bangkok, where ceremonies and rituals are believed to speed the animals’ reincarnation and boost their karma

Beckham died of old age last night, but he’s on his way to a new life. Or so the pet’s owners hope.

By Tibor Krausz

The Suwans, a family of five, have brought the earthly remains of their dead pet to Wat Krathum Suea Pla, a Buddhist temple on the outskirts of Bangkok. They’ve come to administer the last rites to their late canine companion to boost his karmic prospects.

“Beckham was like one of my own children to me,” says Saythan Suwan, 43, a mother of two. She rescued the dog from the streets in 2004 and named him after English footballer David Beckham, who is hugely popular in Thailand.

A member of the Suwan family places new monk’s robes on Beckham during the service. The robes are donated to the monks on Beckham’s behalf.

The stray pup became a loyal member of the Suwan household. He guarded the premises, played with the children and shared a bed with grandma, who died recently at age 84. When Beckham took his last breath, the Suwans bathed his body, sat in vigil, and the following morning took him to the Buddhist sanctuary to be cremated.

“We want to do the best for him so he can be in the best place in his next life,” explains Saythan, a saleswoman. “If Beckham is reborn, I hope he gets reborn as a member of our family again. We hope he will come back to us as a puppy.”

To help ensure this happens, the Bangkok family have paid for a private ceremony at the temple on their dead dog’s behalf.

In the predominantly Buddhist country, where age-old superstitions still hold sway, most locals believe that by performing meritorious deeds, such as giving alms to monks, they can earn valuable karmic points for deceased loved ones, thereby hastening their rebirth in an auspicious new incarnation. And for an increasing number of Thais, like the Suwans, these deceased loved ones include pets.

The Suwans are gathered mournfully in a small chapel, where Beckham lies draped in lily-white funerary shrouds on a bier among colourful garlands and bouquets of flowers. One by one they sprinkle the dead canine with marigold petals and take turns pouring scented water over him from a small decanter.

“If I’ve wronged you, please forgive me. If you’ve wronged me, I forgive you,” a funeral assistant intones on account of the dead dog, during a service with stylised rituals that closely follow those of human funerals.

A monk places votive offerings on a dog during a pet funeral.

Sitting cross-legged on antique wooden chairs inlaid with mother-of-pearl, four monks chant plaintively for Beckham’s benefit. In return, the family offer the monks new robes and provisions in their dog’s name.

Beckhamis then taken outside to a small crematorium custom-made for pets, where the Suwans place roses fashioned from wood shavings on his corpse in a final tribute.

“We will scatter his ashes in the [Bangkok’s] Chao Phraya River,” explains Anyamanee, one of Saythan’s daughters. “We scattered my grandmother’s ashes there. She and Beckham were always together in life,” she adds. “We want them to be together in death, too.”

Outside, another dog is waiting to receive the same treatment. Lying peacefully on a metal table is Nimbus, a 10-year-old husky. He looks as if he is asleep. The night before, he began pacing agitatedly and died soon afterwards, explain his tearful owners, a Thai-Chinese man and woman.

“He seemed to be in pain and then he passed away,” the man, who identifies himself only by his nickname, Chok (“Luck”), says between sobs. “We believe he will come back to us – maybe in another form.”

Presently it’s Boozo the poodle’s turn. He’s just died of renal failure. He is placed in a small fuchsia coffin where he’s wreathed in flowers. “He brought us so much joy and so much luck,” Payao Tang-on, 63, says. “We won the lottery because of him.”

She now wants to get the dead pet on the spiritual highway to rebirth. “If we had buried him, his body would have taken a long time to decompose,” Payao says. “This way his spirit can get into a new body faster. He may even be reborn as a person.”

According to Phrakru Soponpihankij, the temple’s abbot, only a few animal species – including elephants, horses, dogs and cats – can be directly reborn as human beings. “But usually, even loyal companion animals can’t earn enough merit on their own in this life for that, so people have to do it for them,” he adds. “Monks are intermediaries between this life and the next. They can help animals gain more merit.”

A Thai family prepare to scatter their Shih Tzu’s ashes into the Chao Phraya River in Bangkok.

Next up for a treatment of monk-assisted extra karmic merit is Luke, a small mixed-breed dog with fluffy, off-white fur, who died of bone cancer. “He was as good a pet as you could ask for,” says his owner, a retired American executive who came with his Thai wife to bid tearful farewell to the dog. “We want to send him off to something better,” he adds. “I’m not sure I believe in the Buddhist concept of reincarnation, but you never know.”

Within three hours on this Saturday morning, four dogs and a cat are cremated in quick succession at Wat Krathum Suea Pla. On some days, says Worratap Janpinid, who operates the crematorium, as many as 20 dead pets are brought here for funeral services – mostly dogs and cats, but there have been rabbits, monkeys, birds, tortoises, goldfish and even monitor lizards.

“I’ve cremated thousands of pets,” Worratap says. A wiry man in his 20s, he is covered in magic tattoos all the way up to his shaven pate, and wears unwieldy signet rings with protective amulets on several fingers to ward off misfortune and death. “Many people who come here have good hearts,” he says.

One bereaved dog owner drove his dead companion 1,000km to the Bangkok temple from the southern Thai province of Satun for a proper pet funeral. The sanctuary lies in a warren of winding streets in an industrial area that was once marshland. It’s one of the few Buddhist temples in Thailand that assist pet owners in administering proper funerary ceremonies for their animals.

Teerawat Saehan, the owner of Pet Funeral Thailand, that specialises in elaborate funerals for pets at Wat Krathum Suea Pla, in Bangkok.

Many other temples dispose of the bodies of pets and stray animals, but they do so with little ceremony. Routinely, the carcasses of beloved pets are burned in incinerators, often without their owners’ knowledge. This practice appalled Teerawat Saehan, the proprietor of a pet grooming salon who was invited by a customer to a dog’s funeral. “It looked as if pets were treated like rubbish,” he recalls.

So a few years ago Teerawat set up Pet Funeral Thailand, a small company that specialises in elaborate cremation ceremonies for pets. “We started replicating human funerals for pets,” says Teerawat, 37, an amiable man who also sports magic tattoos. “People come to us because we do things properly.”

Business is booming. Each month the company hosts 300 to 400 pet funerals, which cost anywhere between 1,500 baht (US$48) and 400,000 baht. The price depends on variables such as the length of the service and the number of monks present. The most expensive pet funerals are overseen by as many as 60 monks and feature special funeral processions, including motorcades. At some of these funerals, the flower arrangements alone can cost 100,000 baht.

But it isn’t these lavish affairs that impress Teerawat. He’s more moved by acts of generosity by poor people. Not long ago, a hard-up family’s two dogs died in a house fire that sent all their possessions up in smoke. With the little money they had left, they paid for a proper funeral service for their dogs.

In a similar show of kindness, when a street dog called Daam (“Black”) died, vendors at a food market where the dog had lived on scraps all chipped in for her funeral. They even brought food for her so she wouldn’t go hungry in the afterlife.

Lolling indolently at the side of the pet crematorium is a stray black mutt, also called Daam. She was dumped last year at the temple with a broken foot and has become something of a resident mascot at cremations. She seems oblivious to the mournful goings-on around her.

Perhaps, Teerawat muses, Daam is here to atone for bad deeds she had committed in her past life. “It’s sad to see dogs suffer and die,” says the businessman, who owns two Rottweilers. “But there’s hope for them in the next life.”

Complete Article HERE!

Life-ending medications are legal in Washington, but getting them is a whole other story

Most people who’ve used lethal prescriptions under Washington’s Death with Dignity Act were white, college-educated and lived in Western Washington. They ranged in age from 20 to 101; most were dying of cancer.

By

[O]n a cold winter morning, Phil Estes gets into the private ambulance he’s hailed for the more than two-hour journey to Spokane, all 99 pounds of the former Hanford engineer clinging to his frail 6-foot-tall frame as his gurney is secured in the vehicle.

He’s taking this trip not to save his life, but to be able to end it. As weak as Estes is, this is his last resort.

The 81-year-old is several years into his fight against colon cancer. He can barely sit up for five minutes at a time, let alone take care of himself. He’s in pain, it’s hard to breathe and the cancer that has riddled his body is going to kill him. So he’s done.

He wants to take “the pill.”

“I’ve lived a long life, a happy life,” Linda Estes recalls her dad telling her family at the time. “I want you to go on with your life, but I’ve thought it all through, and this is the best option.”

But as his family would soon learn, getting a lethal dose of medication, which is legal under Washington’s Death with Dignity Act, involves much more than a single pill. And in Eastern Washington, it can mean long roadtrips to find doctors and pharmacies willing to validate a patient’s terminal illness and fill a fatal prescription.

In the 10 years since voters passed the Death with Dignity Act, the vast majority of terminal patients who have opted to die under the law lived in Western Washington — more than 90 percent of cases most years — despite Eastern Washington accounting for more than 20 percent of the state population.

The discrepancy between the two sides of the Cascades, experts say, is largely due to access: Even those who can cover thousands of dollars in out-of-pocket costs aren’t guaranteed to live in an area where a doctor or hospital system is willing to participate.

In Estes’ case, Dr. David Jones had been working with him for years and was willing to learn how to sign off as the attending physician and write him a prescription. That meant Estes just needed another consulting doctor to agree he was mentally competent, deathly ill and not being coerced to get the life-ending medication.

But Jones learned that participating would violate policy at Kadlec, the Tri-Cities hospital system where he works, and he feared he might lose his job. The previously secular system had recently been acquired by Providence, a Catholic health-care system that generally doesn’t allow its employees to participate under the rules of the act.

So the family scrambled to find other doctors.

“We called everybody we could think of,” Linda Estes recalls. “At one point my mother was carrying all the cellphones and the house extension in a bag with her, so whoever called, she could answer them.”

Eventually, with assistance from End of Life Washington, a Seattle-based organization that helps people navigate end-of-life options, they got in touch with a Spokane doctor willing to sign the attending paperwork, and a local physician agreed to handle the consulting role. But the Spokane doctor wanted to diagnose Estes in person, spurring the $1,400 contracted ambulance ride from Richland to Spokane.

After an exhausting day of appointments, Estes got his prescription.

“I got out to the ‘cabulance,’ and I put the bag in dad’s hands,” Linda Estes says. “He grabbed that little [prescription] bag and his whole body relaxed. He’d been so afraid that at the last minute, that this decision that was his to make would be snatched from him.”

Estes took the medication at home Jan. 4, 2016, fell asleep and died peacefully with his daughter holding his hand.

But Linda Estes questions why it was so difficult to access something that was legal, especially when her father’s doctor was OK with the decision.

“My mom and I were able to accomplish this because we had the financial means and educational resources,” she says. “What do people do who don’t have these kind of resources? It shouldn’t be this hard.”

So she’s joining efforts to make the process easier for others and ensure physicians who want to sign off can do so.

Voter support for Initiative 1000 — Washington’s Death with Dignity Act — crossed typical ideological boundaries, with counties on both sides of the Cascades approving the measure.

TERMINAL CHOICES
Washington’s role in nationwide right-to-die efforts has a complicated history. In 1997, the U.S. Supreme Court reviewed a Washington state law that made physician-assisted suicide a felony. The court held that the law was fine, but also left the door open for states to pass laws allowing the practice if it wouldn’t violate their own constitutions.

That same year, Oregon became the first in the nation to enact its Death with Dignity Act.

A decade later, nearly 58 percent of Washington state voters approved their own version of the act, making Washington the second state in the country to allow the practice. Assisted suicide is still illegal under state law, but under the Death with Dignity Act, people who are already dying and meet the qualifications are not considered to be committing suicide — their underlying illnesses are listed as the cause of death on death certificates.

Since then, three other states — Vermont (in 2013), Colorado (2016) and California (2016) — and the District of Columbia (2017) have also legalized it. Opponents have filed various challenges in court, but each of the laws have been allowed to move forward. Montana hasn’t passed a similar law, but the state’s Supreme Court determined in a 2009 case that nothing in Montana law prohibits physicians from participating. That means about a sixth of the U.S. population lives in a state where the process is legal, and several states are currently considering similar bills.

The majority of American adults believe that someone has a moral right to end their life if they are suffering great pain with no chance for improvement (62 percent), or have an incurable disease (56 percent), according to a 2013 Pew Research survey on end of life. However, only 47 percent approved of laws allowing doctors to prescribe lethal medication to terminal patients.

How that process is referenced largely depends on viewpoint: Opponents typically refer to it as “physician-assisted suicide” or “euthanasia” (mercy killing), while proponents tend to use “death with dignity” or “physician aid-in-dying.”

Many opponents, including large sectors of the medical field and religious organizations, consider the act a crime or immoral. Some worry there could be a slippery slope: If patients think they are a burden on their families, they may feel pressured to die sooner; or insurance companies could decide it is cheaper to pay for fatal medication than further treatment. In summer 2016, Pope Francis told medical leaders that physician-assisted suicide was “false compassion.”

“Frailty, pain and infirmity are a difficult trial for everyone, including medical staff. They call for patience, for ‘suffering-with.’ Therefore, we must not give in to the functionalist temptation to apply rapid and drastic solutions, moved by false compassion or by mere criteria of efficiency or cost effectiveness,” the Catholic News Agency reported Francis saying. “The dignity of human life is at stake.”

But proponents point to very specific protections written into the law. More than one physician needs to determine someone is terminally ill and not being coerced. At least one witness to the request for medication must not be related or stand to gain financially from the person’s death. There are mandatory waiting periods and the chance to rescind a request before a prescription is filled.

In states where it is not legal, people sometimes take extreme measures to die on their own terms.

Lacie Agidius was drinking coffee with her father in Lewiston, Idaho, when he received the worst call of his life.

Her grandfather was on the other end. He’d dressed in his best Sunday suit, organized important documents and was calling to make sure someone knew where a few things were on the family farm before taking his own life.

“He had told [my dad], ‘I want you to know, I don’t want to freak you out: Today is the day. I’m getting ready to walk down to the car,'” Agidius says. “He said, ‘This is not a call for help. This is absolutely what I want to do.'”

After being diagnosed with prostate cancer, her grandfather chose not to treat it. For months, he’d told his family he was getting his affairs in order and planned to take things into his own hands if it came to the point where he was in too much pain and couldn’t care for himself, but they’d largely brushed him off or were in denial, Agidius says.

Then came the call. In an awful shock to Agidius’ father, not only did her grandfather warn him not to call authorities, but he also said if he wasn’t successful, he wanted them to “finish the job.” A half-hour drive away, her father refused and said, “You don’t need to do this.”

“The whole conversation was awful,” Agidius says. “That long car ride for my dad and brothers, not knowing what they were going to find, that whole experience was so traumatic.”

By the time they arrived, it was too late.

Agidius, who now works in hospice care in the Spokane-Coeur d’Alene area, says she wishes that life-ending meds would have been an option for her grandfather, as it would’ve made things easier on everyone to know what was coming, and would have been less frightening for him, as it would have provided certainty.

She still lives in Idaho, where lawmakers made physician-assisted suicide a felony in 2011, partly in response to efforts similar to those that legalized the practice in neighboring states.

“It is something that is hard for people on the Idaho side to think we wouldn’t have that option,” she says. “You plan that date, then you can have time with that person, you know it’s happening. You can say those things you want to say and not have a shocking situation.”

PLANNING FOR THE UNKNOWN


Jessica Rivers, an End of Life Washington volunteer

Aside from the planning required by mandatory waiting periods, people with life-ending meds tend to plan out the process with family, and in each of the cases volunteer client adviser Jessica Rivers has worked on, they tried to say meaningful goodbyes to their loved ones.

Rivers, who lives near Palouse, Washington, has been a volunteer with End of Life Washington for about four years, working with families in Pullman, Spokane and rural communities in the region.

In the first case she worked, she and other End of Life volunteers arrived on the date their client selected to find his home full with family, friends and neighbors.

“They had food and drink and had all been having his celebration of life that morning,” Rivers says. “It was really remarkable, because we just let them take their time and do what they needed to do.”

The man, dying of aggressive cancer, gave his own eulogy, and everyone surrounded him as he lay down in bed, took the medication and talked them through how he felt before falling asleep. In the quiet, someone started singing “Amazing Grace,” and everyone cried.

“It was very powerful for me, and it was very gentle and very peaceful for him,” Rivers says.

For her, the choice to get involved in end-of-life care started about 20 years ago, when she cared for her mother, who was dying of pancreatic cancer.

“I remember my mom looking at herself in the mirror one morning, and the cancer had just ravaged her body,” Rivers says. “She was actually, amazingly enough, OK with dying, but she wasn’t OK with the process of getting there, and I think that’s true for most of the folks I’ve been with at End of Life.”

Of the 25 cases she’s been involved with through the organization, each patient died, though only six of them decided to take the medication.

“The majority of them told me, ‘I may or may not use this, but it gives me peace of mind,'” Rivers says. “And one of the things I tell them on that first visit when I meet them is ‘I’m not invested at all in whether they take this or not.'”

As a volunteer, she typically meets with families a few times, offering information on what the process may look like, encouraging clients to get on hospice care, and talking about death and the dying process, which is new to many people.

“I think that helps reduce fear,” she says. “My little piece of advice to family members is try not to let the fear and grief interfere in the days to come that you have left with your loved one. Try to really balance that fear and grief with love and gratitude.”

Rivers, who spent several years working in hospice, feels people aren’t supported enough through the end of their lives, which can be distressing. One dying man Rivers spoke to last year blurted out in front of his adult children that if he couldn’t for some reason access lethal medication under Washington’s law, he had hunting guns in his basement.

“The fear and distress this caused his children was so obvious and apparent,” Rivers says. “But the reality is people who are desperate can do dramatic things, and that’s one of the reasons this law is so important. People should not have to feel desperate.”

Artist Melinda Hannigan fought cancer for years before deciding to take life-ending medication at her home in Twisp.

EAST SIDE, WEST SIDE
Of the more than 1,100 people who are known to have died after getting prescriptions for lethal medication under Washington’s law from 2009 through 2016, fewer than 150 lived east of the Cascades, according to data compiled by the Washington State Department of Health. Not all of those people took the medication.

About three-quarters of people who got prescriptions had cancer, while the rest were mostly people with neurodegenerative diseases such as Lou Gehrig’s disease or respiratory or heart disease.

People who use the law account for only about two of every 1,000 deaths in Washington, says Sally McLaughlin, executive director of End of Life Washington. Of the more than 54,000 people who died in the state in 2015, 166 used the medication, putting the number of deaths in that category slightly above the 141 people who died from the flu the same year.

“It’s not like it’s a rampant number of people, but the issues with access have to do with several things,” she says. “One is access to physicians who can or are able to prescribe life-ending medications in a more conservative environment. There are a lot of physicians who don’t even want to think about administering life-ending medications.”

Secondly, many doctors are not allowed to participate under the rules of their employers. Patients often have to form new relationships with doctors when they’ve got little time left.

Aside from the population size accounting for part of the difference, many people east of the mountains just don’t know the law exists, says Dr. Raleigh Bowden, who lives in Twisp and works as a volunteer medical adviser with End of Life.

“In my personal experience, a lot of people don’t know about the law,” Bowden says. “In fact I talked to one pharmacist [last] year who didn’t know we had a law.”

Patients need both a prescribing doctor and a consulting physician, who ensures the person isn’t being coerced. To be eligible, the patient must be a Washington resident, have about six months or less to live, and understand that there are other options, Bowden says.

Ideally consulting physicians see someone in person, but in rural areas, sometimes they have to use other options like electronic communication. From Twisp, Bowden will sometimes serve in the consulting role via Skype, as that part of the process mostly involves going over a checklist with the patient.

Attending doctors almost always want to see the patient in person, Bowden says, and it’s better if they’ve already had a relationship. Jones, Estes’ doctor, says it was the fact he’d known him for eight years that made him comfortable with the idea of supporting his decision.

“It was the perfect situation for me to say, ‘Wow, how could I deny this?'” Jones says. “Whatever my beliefs were, I was a physician in the state of Washington where this was legal. It took the politics out of it for me until the very end when I realized I might be at risk of losing my job.”

Aside from physicians, the medication itself can pose problems.

End of Life Washington recommends one of two prescriptions. The first and cheapest runs about $700, but needs to be made in a compounding pharmacy, which often isn’t available in rural areas, Bowden says.

The second and most expensive option involves opening up about 100 capsules of Seconal, once regularly prescribed as a sleeping pill, and mixing the contents with juice or something the patient can drink. With only one manufacturer making the drug anymore, the price for that dosage has gone up from a few hundred dollars when Washington’s law started to more than $3,000.

“If you’re poor — and I have yet to see an insurance company pay for this, though I hear some will — then the cost falls into the lap of the patient or their family,” Bowden says. “That’s a barrier if you come from a poor part of the state.”

The most common reasons Washington patients told their doctors they wanted life-ending meds was because they were losing autonomy and the ability to engage in activities that make life enjoyable, with 84 percent to 100 percent of patients citing those two reasons every year from 2009 to 2016, the most recent for which state data has been released.

In contrast, inadequate pain control or concern about it was cited by 25 percent to 41 percent of patients, and only 2 percent to 13 percent cited concerns about the cost of medical treatment.

For many years, Pat and Melinda Hannigan lived in Seattle, where Melinda was an artist and Pat worked as a tanker pilot in Puget Sound. Melinda was hanging some of her paintings for a show in Tacoma when she had a shooting pain go through her head and half of her face became paralyzed. What they initially thought was a stroke was actually due to a tumor, part of an aggressive cancer that would spread to other parts of her body.

Hannigan tried every treatment available, but after years of radiation, chemotherapy and other therapies destroying her body, her quality of life was awful, Pat Hannigan says.

She could barely swallow or speak, was put on a feeding tube for more than a year and was confined to a wheelchair. After going on hospice care in the home the couple had built in Twisp, she decided to take the medication.

When it came time, Pat had to drive an hour to Omak to get the pills, which cost them about $4,400 out of pocket.

Hannigan shared a final dinner with her kids and grandkids and was surrounded by family when she took the lethal dose in July of 2016.

Pat Hannigan says it was the right decision for his wife and was in keeping with her choices to accept or decline treatment at every step of her illness. Still, he hasn’t spoken to many people about the experience, in part because he doesn’t want to influence others, who need to make that choice for themselves. However, he thinks those who oppose the law don’t understand what it’s like.

“I hear people criticize it and I think to myself, ‘They have never been through an experience like this in their lives,'” Hannigan says. “It’s really easy for them talk based on their religious beliefs or their philosophical principles, but if you live through four years of absolute, total hell, with no hope, Death with Dignity is an awesome thing.”

NOT FOR EVERYONE
Policies about physician participation under the act vary even within the same system.

For example, Providence physicians in Spokane are not allowed to participate under the rules of the act in any way, even though physicians at Swedish, a Providence-affiliated hospital in Seattle, are allowed to if they choose.

“We respect the rights of patients and their care team to discuss and explore all treatment options and believe those conversations are important and confidential. As part of a discussion, requests for self-administered life-ending medication may occur, but our providers do not participate in any way in assisted suicide,” writes Liz DeRuyter, director of external communications for Providence Health & Services. “We provide all other requested end-of-life and palliative care and other services to patients and families.”

MultiCare, the other large service provider in Spokane, does allow its physicians to participate as attending and consulting physicians, and they may write prescriptions. However, no MultiCare physicians or pharmacies can help patients fill the prescriptions, meaning they need to find another pharmacy to fill it.

In her efforts to increase access, Linda Estes is working with Providence to change the policy at its Tri-Cities affiliate hospital to allow physicians to participate under the law, even if that means doing so outside of the scope of the hospital system. She’s been in contact with a Providence attorney about helping draft that policy, which is under consideration.

Estes says she’s passionate about making that change because when a family member is dying, the last thing people need is additional stress around end-of-life decisions.

“When you’re grieving so hard, you don’t have brain cells left to deal with this,” Estes says. “Having been through it myself, and having been put completely through the ringer, I want to make sure this is an easier process to do. Not to say it’s the right choice for everyone, it’s just our choice.” ♦

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