Rethinking Dying, Part 2

What really matters at the end of life

[A]t the end of our lives, what do we most wish for? For many, it’s simply comfort, respect, love. BJ Miller is a hospice and palliative medicine physician who thinks deeply about how to create a dignified, graceful end of life for his patients. Take the time to savor this moving talk, which asks big questions about how we think on death and honor life.

Rethinking Dying, Part 1

There’s a better way to die, and architecture can help

[I]n this short, provocative talk, architect Alison Killing looks at buildings where death and dying happen — cemeteries, hospitals, homes. The way we die is changing, and the way we build for dying … well, maybe that should too. It’s a surprisingly fascinating look at a hidden aspect of our cities, and our lives.

 

What Is a “Good Death”?

By

[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!

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!

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.” ♦

Complete Article HERE!

Oregon couple’s final days captured in intimate aid-in-dying video

A lethal prescription under Oregon’s Death with Dignity law.

[O]n the last morning of their lives, Charlie and Francie Emerick held hands.

The Portland couple, married for 66 years and both terminally ill, died together in their bed on April 20, 2017, after taking lethal doses of medication obtained under the state’s Death With Dignity law.

Francie, 88, went first, within 15 minutes, a testament to the state of her badly weakened heart. Charlie, 87, a respected ear, nose and throat physician, died an hour later, ending a long struggle that included prostate cancer and Parkinson’s disease diagnosed in 2012.

“They had no regrets, no unfinished business,” said Sher Safran, 62, one of the pair’s three grown daughters. “It felt like their time, and it meant so much to know they were together.”

In the two decades since Oregon became the first state to legalize medical aid-in-dying, more than 1,300 people have died there after obtaining lethal prescriptions. The Emericks were among 143 people to do so in 2017, and they appear to be the only couple to ever take the drugs together, at the same time, officials said.

The pair, early members of the 1980s-era Hemlock Society, had supported the choice for years, and, when their illnesses worsened, they were grateful to have the option for themselves, family members said.

“This had always been their intention,” said daughter Jerilyn Marler, 66, who was the couple’s primary caretaker in recent years. “If there was a way they could manage their own deaths, they would do it.”

Before they died, the Emericks agreed to allow Safran and her husband, Rob Safran, 62, founders of the Share Wisdom TV Network, of Kirkland, Wash., to record their final days and hours. At first, the video was intended just for family, but then Safran asked her parents for permission to share it publicly.

“I think it can help change the way people think about dying,” she said.

The result is “Living & Dying: A Love Story,” a 45-minute documentary that details the background of the Emericks’ final decision and their resolve in carrying it out.

Shot mostly with handheld smartphones, the video captures the intimate moments of the couple’s preparations in their last week of life.

Charlie Emerick was a former medical missionary in India and chief of ENT at a Portland-area Kaiser Permanente hospital. (Kaiser Health News is not affiliated with Kaiser Permanente.) He was diagnosed with Parkinson’s disease in 2012, after dealing with symptoms of the disease for years. He suffered from prostate cancer and heart problems and learned in early 2017 that he had six months or less to live. In the documentary, he described his thoughts as he pondered whether to use aid-in-dying.  

“You keep going, Charlie, you’re going to get worse and worse and worse,” he explained to Sher Safran, in a quavering voice. “The other can’t be worse than this.”

Francie Emerick, who handled marketing and public relations for the hospital in India, appears vital and articulate in the video. Her daughters, however, say that her energy was fleeting and that it masked years of decline following multiple heart attacks and cancer.

In the video, Francie acknowledged that she could have survived a bit longer than her husband. But, she said, she didn’t want to.

“Charlie and I have a rather unique relationship in that we have done and been so much to each other for 70 years,” she said.

The pair carefully followed the specifics of the law, which requires examinations by two different doctors to determine a prognosis of six months or less to live, multiple confirmations of intent and the ability of patients to ingest the lethal drugs themselves. The process takes a minimum of 15 days.

“We do want it to be legal,” Francie said.

The video traces the arc of the couple’s lives. The Emericks met as college students in Nebraska, married on April 4, 1951, and spent years in the 1960s as medical missionaries in Miraj, India. Dr. Emerick’s career took them to Southern California and then to Washington state, to India and ultimately to Oregon, all while raising three girls. In 2004, they moved into an apartment in a retirement community in Portland.

That’s where the Emericks died on a cloudy Thursday last spring, six days after a family celebration that included their children and grandchildren — and, at Francie’s request, root beer floats. The gathering was happy, but bittersweet, family members said.

“There were moments that they expressed great sadness at the goodbye that was coming,” Marler recalled.

The Emericks sought help from Linda Jensen, a veteran team leader with End of Life Choices Oregon, a nonprofit agency that supports people seeking to use the state’s Death With Dignity law.

“They were pretty well informed,” said Jensen, who has assisted with dozens of deaths in 13 years. “What they wanted to understand was what a planned death really looks like.”

The video includes a meeting between Jensen and the Emericks two days before they died. It would be nothing like dying on TV, she told them.

“You do not lose control of your bowel or bladder. You do not gasp for breath,” she explained. Instead, she said, they would simply go to sleep.

The Emericks went over the plan: no breakfast, just pills to calm their stomachs at 9 a.m., followed by the lethal drugs an hour later.

Safran and Marler appear calm and determined as they help finalize their parents’ arrangements.

“There was a lot of grieving ahead of time because we knew it was coming,” Marler said.

Some members of the family disagreed with the couple’s decision, but the Emericks were determined.

“You two have never wavered?” Safran asked her mom.

“We have not,” Francie replied.

The video captured details of the final morning: Charlie saluting the camera farewell as he’s wheeled down the hall, Safran’s tearful last hug from her mother, Charlie and Francie clasping hands after they swallow the drugs.

“It just takes such a huge amount of internal strength and self-knowing to face that choice, to make that choice and then bring along all the people that love you and are going to miss you,” Jensen said.

There was no funeral after the deaths. The Emericks had donated their bodies for research through a program at the Oregon Health & Science University and any remains wouldn’t typically be returned for two or three years, a spokeswoman said.

In the interim, the video has become comforting and precious to the family, said Safran.

“It’s very lovely, just to hear their voices,” she said.

The documentary also serves a larger purpose: helping others to understand how aid-in-dying works, she said.

Carol Knowles, 70, was a member of Francie Emerick’s book club. The Emericks didn’t tell other residents about their plans. Knowles said she was surprised when they died the same day — until she saw the documentary.

“I thought it was brave and beautiful,” she said. “You could see the care with which Charlie and Francie had made that decision.”

Another member of the group expressed concern, however, saying her religion prohibited any efforts to hasten death. Knowles said she plans to take the documentary to the retirement center’s social worker before showing it more widely.

“We want to do it in a way that will not scare them or make them feel uncomfortable,” she said.

Stephen Drake, research analyst for the disability rights group Not Dead Yet, had serious reservations about making the video public. He worried that presenting aid-in-dying in a positive light “changes the expectations; this romanticizes the idea of not just suicide, but a double suicide,” Drake said.

Safran said she expects strong reactions — including criticism — for chronicling her parents’ final days. But she said the documentary honors the Emericks’ belief that, if possible, everyone should have a say in when and how they die.

“We have a faith that says life is not to be worshipped,” Francie said. “It’s the quality of life that counts.”

Complete Article HERE!

Living like I’m dying

I’m leaning into death to see if I can change how I feel about it.

By

[I] imagine I’m not the only person who’s written their own obituary, but maybe I’m the first one to see it in print. Writing my obit was the first task in an exercise that came to an end yesterday.

“Brown, Laurie Jane. (October 7, 1957 – March 4, 2018). Laurie died suddenly yesterday in Toronto at age 60.”

I feel like Scrooge seeing his own gravestone.

I am in perfect health, but having recently turned 60 years old, I am feeling an increasing urgency about, well, everything. Why not give myself the deadline to end all deadlines? On Dec. 4, 2017, I decided I had three months to live. Three months to make more of whatever time I have left.

So for the past three months I have been thinking about death everyday. “Is this the last time I hand wash this sweater? Is this the last time I talk with my son?” It was jarring, but I kept going. I wanted to get to a less anxious feeling about my own mortality. By trying to live as if I was dying, would I live each day differently? Might that take some of the sting out of my impending death? Is that even possible?

The first thing anyone with three months to live is told to do is “get your affairs in order.” I updated my will and my living will. Next, I collected all my banking and legal information and printed it. (Kids – it’s in a bankers box on the floor of my closet, along with the full obituary.)

I started my death exercise without telling anyone. Good thing – I could have ruined a few dinner parties. I did let one girlfriend in on it and her response was “March is still too cold to stand by your grave. Can you make it May?”

With two months left on the calendar, I flipped between two very different states of mind. On a good day? I believe I’ve had a full life, a lucky life and I’m good to go right now. But on a bad day, it’s a different story: I want to be a grandmother, I want to create more, I want to grow old. My children need me and my new partner needs me. I couldn’t bear to contemplate the end of a love I had barely begun.

I never used to think about death until my mother died at 58 of ovarian cancer. I was terrified that would happen to me. Now, I scroll through my Facebook feed reading chemo updates and news of departed friends. I feel like death is hunting me and my senses are working overtime to hear the approach. I don’t want to live in fear – so I’m leaning into death to see if I can change that.

Each morning, I opened my eyes and thought of the day in front of me. I paid attention to the morning light through my window, the luxurious feel of my bed sheets, the realization that I had no pain, and I felt great. My feet hit the floor and I jumped into my day joyously. My mantra became ‘say yes until it breaks you.’ I was sounding like an inspirational poster, with kittens. And yet, I didn’t feel as if I was truly living each day like it was my last.

Too embarrassed to talk to people about what I was up to, I turned to books. Die Wise by Stephen Jenkinson struck a huge nerve.

Stephen has been witnessing death for decades, both as head of a palliative-care unit in Toronto and as a “grief whisperer,” helping the dying and their families navigate death. Stephen has no 10-step plan to a wise death but talking about it with him on Pondercast, my podcast, was such a relief.

When my mother lay sick and dying, I felt frozen and mute, and she was keeping what she felt to herself. Probably because I didn’t ask. I have terrible regret about that. I know I’m not alone in these feelings after a parent dies.

We live in a death-phobic culture. We don’t acknowledge dying people, we keep turning the conversation in the other direction, toward life and “keeping up the fight.” We institutionalize our terminally ill and our aged and we outsource the task of dealing with our dead. Illness and death are kept as far from the living as possible – it’s no wonder we are at a loss to find anyone to talk about it with.

In the same way that women have fought to take back the birth experience – bringing it home, surrounding birth with family and siblings, making it a human experience instead of a medical one – might we do the same thing with death?

I began to question my motives in taking on this three-month death exercise. It became clear that I was anxious to learn how to handle death. I wanted to bring order to the chaos of feelings I had. I thought I could learn to embrace death just enough to think I had it pegged.

My experiment is a pale shadow to the real thing. It doesn’t compare to the anxiety and fear felt by those who are truly ill. Nor what I once felt waiting for a biopsy report.

I can’t embrace death, death will embrace me. It will have its way with me. It will be messy and confusing. Death will ask everything of me. Will I be able to accept that? Is it too much to ask that that I might I leave my life loving it?

Perhaps the strangest outcome of this morbid exercise is realizing I have a moral obligation in my final days. Dying will be my last and perhaps most important act of parenting. I need to show my children how it’s done. That death carries with it a responsibility is helpful to me, it gives my death some purpose.

I have started awkward and halting conversations about death with my father, and have asked him to let me in. I want him to share his coming death with me. It will help me when my time comes.

Keeping death in the forefront of my mind is informing everything I’m doing. It’s a funny liminal place to be – but the balance of it feels right.

Laurie Brown lives in Toronto.

Complete Article HERE!