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).
[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.
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.
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.
[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.” ♦
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.”
I’m leaning into death to see if I can change how I feel about it.
By Laurie Brown
[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.
Nobody wants to imagine it. But you can disaster-proof your affairs with this checklist.
Insurance, wills, the POA (power of attorney)—they all matter in making things more manageable for survivors.
By Chana R. Schoenberger
[F]ew estate plans consider the possibility of an early death. That is a potentially disastrous mistake, experts say.
By the time you’re in your 40s, you likely know someone, or know of someone, who has died young. That is why it is important for people to draw up plans as soon as possible, including accounting for what will happen should death occur in middle age, with children still at home.
We spoke with estate-planning lawyers to ask what end-of-life documents and estate plans a 30- or 40-something would need to assemble (aside from tax-planning help, for which an accountant or tax lawyer should be enlisted). All recommended getting started right away with this checklist:
INSURANCE
Life insurance can be expensive, but it ensures that if a spouse should die young, his or her partner can stop working or downshift careers to take care of the children. People often buy life insurance for themselves when their children are born, so the surviving spouse won’t have to worry about having money for tuition or the costs of raising children as a single parent.
“It’s best if you can buy guaranteed renewable term insurance when you’re still insurable and have no underwriting risks, while you’re still relatively young and before you have any diagnoses,” says Joe McDonald, an estate-planning lawyer at McDonald & Kanyuk in Concord, N.H.
It’s also advisable to buy long-term-care insurance, though it is becoming more expensive as policyholders live longer. Many employers also offer disability insurance to replace a certain percentage of salary if the employee becomes incapacitated, says Joshua Kaplan, an estate-planning lawyer at the law firm Dechert in New York.
WILL
Everyone needs a will. Without one, depending on the state of residence, it could take weeks or months for an estate to make its way through probate court until a judge appoints an executor to wind down the deceased’s financial affairs. During that time, heirs may not be able to access the money left to them or even write checks to pay their bills.
Often state rules say that every person named in a will as the recipient of property needs to receive written notice that the will is in probate.
“It’s often simpler to leave everything to one person or a class of person, like your children, and then have them distribute,” says Mr. Kaplan. His grandmother did this, leaving everything equally to his aunt and father, with a letter explaining which relatives should also get certain items.
Once the will has been made and signed properly, where should it be kept? Somewhere safe, where the family can find it, such as with a lawyer. But be sure to tell someone in the family where it is.
“Don’t leave it in your safe-deposit box unless someone is the second signer, or you won’t be able to get to it,” says Sharon Bilar, an estate lawyer who has a practice in New York.
BENEFICIARIES
When you set up a bank account or any financial account, you’re typically asked to name a beneficiary to inherit it if you die. Such an account will pass directly to that person without going through probate, so make sure your beneficiary designations are up-to-date. You may have designated your siblings when you started working and set up your 401(k), for instance, but now you’re married and want to designate your spouse.
You also need a secondary beneficiary, in case something happens to your first choice (suppose, for example, that you and your spouse are in a car crash together). A trust can be a beneficiary as well. If there isn’t a space on account-opening forms for a secondary beneficiary, call the financial institution and request to add this person.
Generally, your children will be your secondary beneficiaries, after your spouse. Be careful of designating as secondary beneficiary an adult whom you would like to take care of your children, Ms. Bilar says.
“If you make anyone the beneficiary who’s not your child, that money legally belongs to the beneficiary, and you cannot force that person to spend the money on your child,” she says.
POWERS OF ATTORNEY and PROXIES
“If you’re worried about passing suddenly or becoming suddenly incapacitated, the legal documents you should have are some sort of health-care advance directive and a living will,” Mr. Kaplan says. A health-care proxy appoints one person, older than age 18, to act on your behalf when making medical decisions. If you don’t have this document signed and something happens to you, your spouse will have the right to make these decisions for you, followed by your adult children and your parents. Make sure to designate a first- and second-choice person to be your proxy, Mr. Kaplan says.
You’ll also want to sign a living will, which lays out your intentions for end-of-life care, such as when to withhold treatment if doctors determine you’re not going to recover, and whether you wish to be an organ donor. This is important if you are in an accident or otherwise become incapacitated. Because wishes often are driven by religious and other personal moral concerns, it is important for couples to discuss their own preferences, Mr. Kaplan says.
GUARDIANSHIP
When there are children under 18, the most important step in estate planning is to decide who should raise them if both spouses are gone. This preference goes into your will, where a judge will almost always honor it when deciding whom to appoint as guardian. If you don’t have this designation in writing, you’re leaving it up to the court to decide who will take care of your children. “It’s best if spouses both name the same people in the same order” when they choose a guardian for minor children, Mr. Kaplan says.
The guardian you select for your child doesn’t have to be the trustee of any trust you set up for your child—although it is easier if they agree on how to spend the money to benefit the child.
“Some people want the trustee to put the brakes on the guardian spending money for the child, to act as a check and balance,” says Mindy Stern, an estate lawyer at Schwartz Sladkus Reich Greenberg Atlas in New York.
Every additional piece of information survivors have about the deceased’s affairs can make the hours and days after a person dies easier. Survivors should have access to a file that contains insurance information; a list of all your bank and financial-institution accounts, “529” college-savings accounts and retirement accounts, with beneficiary information; a list of all your credit cards, as well as any household expenses that are set on auto-pay; and details on where to find the deed to the house and the cemetery plot, plus the key to the safe-deposit box.
Also keep a list of online accounts and their passwords, as well as information on airline frequent-flier miles, and the credentials to any cryptocurrency wallets you hold, Ms. Bilar says.
Rutgers palliative care expert Judy Barberio gives patients and their families strategies on how to ease the transition to end-of-life care
[A]lthough 70 percent of Americans die from chronic disease, most do not make their preferences for end of life care known to their families, leaving loved ones unprepared for their final days. Patients who wish to die at home and who can benefit from palliative or hospice care usually are referred too late – often in the last four weeks of life – to maintain comfort and quality of life and to better prepare for death.
The nation’s aging population is presenting new challenges to terminally ill patients and their loved ones, who must manage chronic pain, disability and questions over when to engage palliative or hospice care, and to health care providers who help them navigate the end stages of life.
To advocate for health care that maximizes quality of life and that minimizes unnecessary suffering in end-of-life care, Rutgers School of Nursing has partnered with Barnabas Health Hospice and the Visiting Nurse Association of Central Jersey Home Care and Hospice to educate nurses, physicians, social workers and other professionals on how to improve the end-of-life experience for patients and their families through the “Hope and Resilience at the End-of-Life” conference in New Brunswick on March 7 and 8.
Judy Barberio, associate clinical professor at Rutgers School of Nursing and one of the conference’s organizers, discusses some of the most pressing issues faced by terminally ill patients and their families.
How can palliative care and hospice improve the quality of life for the terminally ill and their families?
Palliative care assists a person who has been diagnosed with a life-limiting illness who might die within the next one to two years. It provides an additional layer of support and symptom management as the patient continues with disease-modifying treatment and provides bereavement support for families as well as addresses the patient’s physical, psychological, social and spiritual needs. Studies have shown that people who start palliative care early in the advanced stages of their illness can prolong their lives and have a better quality of life.
Hospice, which is engaged when disease-modifying treatment has ceased, is appropriate when the patient will most likely die within six months and the focus turns to making the patient comfortable and maintaining quality of life.
How can family members help a terminally ill person continue to live a full life with a chronic illness?
People don’t stop being who they are just because they are dying. They can still enjoy a full life by focusing on the small things that make a difference: wearing clothes they love, eating favorite foods, listening to music, reading books and spending time with friends and family.
Palliative care can help by supporting the patients’ family and friends, who often are grieving the illness and eventual loss of their loved one. The team can help family members come to terms with their confusing emotions and understand what the patient is going through. They also help with addressing pain and managing distressing symptoms as a patient goes through treatment and physical decline. They assist patients in expressing their decisions as to the kind of treatment they want at the end of life. They even can help patients live their dreams at a time when they need their dreams the most.
Can pain be controlled when you have a terminal illness?
Pain is one of the most frequent and feared symptoms in advanced disease. For many families, the last memory of their loved one may either be that of a “peaceful” and comfortable transition or that of a painful end. Most pain can be relieved or controlled. Effective pain control requires good communication among patients, caregivers and health care providers. Pain control plans are tailored to meet the patient’s particular needs and are adjusted as these needs change.
How can caregivers and family members combat “compassion fatigue?”
Compassion fatigue has been described as the “cost of caring” for others in emotional and physical pain. It is characterized by physical and emotional exhaustion and a pronounced change in the caregiver or family’s ability to feel empathy for the patient and can lead to depression and stress-related illness. Signs of compassion fatigue include feelings of exhaustion, reduced ability to feel sympathy or empathy, anger and irritability, increased use of alcohol or drugs, and impaired ability to make decisions and care for the patient. Once compassion fatigue sets in, a caregiver should receive assistance through a health care provider and counseling. Compassion fatigue counseling should screen for and treat depression and secondary traumatic stress as well as provide an early detection system to prevent relapse.
Self-care is the cornerstone of compassion fatigue prevention. Often family members or caregivers put their needs last and feel guilty taking extra time for themselves to engage in stress-reduction strategies, such as exercising, taking a long bath, sleeping well, meditating, doing yoga or getting a massage. It’s important for caregivers and family members to put their own health and wellness at the top of the priority list while caring for loved ones.
[A]s we celebrate Black History Month, one of our goals should be to change the history of African-Americans like my father enduring needless suffering when we die because we don’t prepare for the inevitable end of life.
When my father’s cancer came out of remission in 2010, he declined in a matter of months. I had never had one conversation with him about his end-of-life care goals, preferences and values, so he suffered terribly during his last days. My family spent so much time fighting over what we thought he wanted, when in reality, none of us knew what he really wanted. That experience taught me not only the importance of these discussions, but also how much of a need there is for us to start planning early, before a time of crisis.
Unfortunately, African-Americans are less likely to complete advance directives or have conversations with our families and health care providers about our their end-of-life care goals, preference and values, according to a 2014 report in the American Journal of Preventive Medicine. It is critical that our community begin focusing on advance care planning about the end-of-life care options, including educating ourselves about the value of hospice and palliative care.
The sad truth is that we suffer from higher rates of health care outcome disparities caused by smoking, obesity, hypertension, heart disease and cancer. By not having frequent conversations about end-of-life care options early, to prepare before a health emergency occurs, people of color often opt for aggressive, futile medical treatments that only prolong an agonizing dying process. African Americans are less likely to access comfort care, hospice and palliative care to maximize the quality of remaining life.
In fact, while representing more than 13 percent of our nation’s population, according to U.S. Census data, we account for only 8 percent of hospice users.
Unlike many of the other disparities that impact the community, this is one we actually have some control over. It starts with having a conversation. Unfortunately too many of us are not having discussions. In fact, 20 percent of African-Americans have not talked to anyone about end-of-life care, according to research conducted by the Duke Divinity School and the National Hospice and Palliative Care Organization.
Every individual has a responsibility to lead by example on health care issues, so I challenge you to start having conversations today, with your personal networks and your health care professionals. Complete an advanced directive and identify your power of attorney, the person who will make decisions for you in the case that you can not speak for yourself. The most loving thing you can do is to make your wishes known to your loved ones, it provides peace for all involved.
Tomorrow is not promised, so whether you want every treatment option available or none at all, it’s imperative to make sure it is clear to those who matter to you the most. Start this process by visiting Compassion & Choices website page, compassionandchoices.org/plan-your-care, where one can access state-specific advance directives and find other resources and tools to help, free of charge.
We even offer a diagnosis decoder that generates questions for physicians specific to a particular illness. Educating and utilizing these resources will not only empower you, it will also have a positive and lasting impact on our community as a whole and the way we experience end of life. Remember … talking about death will not kill you … advocate for yourself!
