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By Josh Kerns, KIRO Radio Reporter

It’s a subject few are willing to talk about: our own deaths.

And even though Washington is one of just six states where doctor-assisted death is legal, very few utilize it, and many know nothing about their options. But a dedicated group of volunteers is working tirelessly to change that.

Retired Seattle chaplain Trudy James says death has always been a part of her life.

“My first baby died at 4 days old, my father took his own life when I was 35, and I became a hospital chaplain when I was 47,” she said.

As a chaplain, she was at the forefront of the AIDS epidemic, working daily with people young and old facing death. She helped build a community of volunteers to support them.

“They were suffering and they knew that they were going to die,” James said. “And what we learned is when they had people around them and things to look forward to and people to talk to, they lived longer and they died better deaths.”

That led James to create the Heartwork end-of-life planning groups.

She began offering workshops and training volunteers in congregations, senior centers, private homes and elsewhere to help raise awareness about the options, and to help people take control of their own end-of-life decisions.

Death with Dignity
Voters approved Washington’s Death with Dignity Act in 2008. It allows terminally ill adults with six months or less left to live to request lethal doses of medication from a doctor, refuse life-saving medical treatment like resuscitation, and to stopping eating and drinking to hasten death.

There are a number of steps involved in this, such as exams and repeat oral and written requests to a doctor who chooses to prescribe the medication.

“A lot of people don’t even know we have this new law in Washington. And if they do know or if they voted for it, they have no idea how to access it or what it would mean or what it offers them,” she said.

There are plenty of people and organizations opposed to doctor-assisted death.

Many religious groups and right-to-life advocates argue doctor-assisted death interferes with God’s will. Doctors in some religious-based hospitals are prohibited by their employers from discussing the law.

After seeing scores of people die extremely painful deaths over the years, James couldn’t disagree more.

“I say dying in intensive care with machines hooked up to all of you and not being able to speak to your loved ones isn’t really a natural death,” she said. “It’s prolonging dying, but it’s not prolonging living.”

This is not suicide
One thing James and other end-of-life advocates underscore is that they are not promoting or encouraging death – just awareness of the options. Namely, that those suffering from painful, degenerative conditions — ranging from cancer to ALS — can hasten their death.

And these advocates emphasize that this is not doctor-assisted suicide. They argue the word suicide should only describe those physically well enough who would otherwise continue living.

“These are people who are going to die anyway and they’re just reducing suffering for themselves and their family,” she said. “That seems to me what God would want.”

James’ experiences with her ministry and the workshops inspired her to produce a short film she could show at senior centers, hospices and elsewhere.

What started as a 12-minute, simple short is now a full-fledged 30-minute documentary called “Speaking of Dying.” It’s basically people speaking from the heart about their own experiences with illness and death.

James says even though people don’t want to think or talk about death, when they can learn their options and plan for it, it can bring incredible peace of mind. And she says it’s something we should all be thinking about and planning for with our families, friends or doctors sooner rather than later.

“There’s nothing that says you’re not going to die until you’re 75 or 80,” James said. “Many people die young and it’s so comforting if they’ve done some work with them and talk with them and tell them what they want.”

James will be hosting a special screening of the “Speaking of Dying” on Saturday, April 29 at Seattle Baptist Church. The goal is to celebrate the film’s second anniversary and raise money to help show and distribute it to more broadly.

“There is always grief when someone you love dies,” she said. “But I say it’s better when they’ve had a peaceful ending.”

Our esteemed board member, Arline Hinckley, recently traveled to Spokane to participate in a Health Forum panel discussion hosted by Spokane Public Radio. The topic was suicide awareness, and in her remarks, Arline made it abundantly clear that those who choose to hasten their deaths through our state Death with Dignity Law are certainly not dying by suicide. Click here for more information and to hear the lively discussion!

 

by Laura E. Bender

A specific moment in my life taught me just how easy it can be sometimes to have a conversation about dying and death. Conversations about the end of your life can be scary, sad, or awkward, but these conversations also can be comfortable. A few years ago, on a flight from Denver to Philadelphia, the woman seated to my left side voluntarily told me all about the healthcare treatments and services she wanted at the end of her life. For example, she openly shared when she did and did not want a “do not resuscitate” order and a feeding tube.

This conversation began after the ever-so-common question people often ask of strangers next to each other on a plane: what do you do for work? I assumed my response would kill the sociable dynamic of our conversation if I didn’t choose my words carefully. At the time, I would read detailed patient death notes in medical records written by hospital staff, and I would talk with family members of recently deceased Veterans about the care they received in their last month of life. “I study the experiences of people dying and the choices people face at the end of their life.” Most people quickly respond with a degree of uneasiness, saying how sad my work must be, and then they find a rather awkward way to change the conversation. This woman was refreshingly and notably different. She dove into how important she knows my work is and how she is confident in the choices she has made for herself. I learned she was perfectly healthy and vibrant, and she didn’t work in a health care related field, so I was very curious about this woman’s perspective.

I have yet to have a more relaxed conversation about end-of-life health care decisions than that long chit-chat on the plane. Many people, however, rarely have such a casual conversation, let alone any conversation at all about advance care planning and end-of-life choices. As a palliative care researcher, I confidently can say that people often don’t know that they even have choices. Many of the people I have spoken with assume they will get the care they want, when and where they want it. If a person has a condition so severe that he or she is unable to communicate, doctors, family members, friends, and even sometimes the government are forced to make decisions for you about your health care treatments and services that may or may not be the care you want. Any disagreement may prolong decision-making and possibly increase the chances of you suffering. This confusion and conflict that can arise during difficult times can be eased with preparation.

Educational barriers often result in inadequate end-of-life care conversations. One fantastic way to remove that barrier is by using the many free resources available to you that you may be surprised exist. For example, did you know that April 16 is “National Healthcare Decisions Day”? The resources on their website, “nhdd.org,” are an excellent starting place to educate yourself on how to have conversations about end-of-life decisions that range from very formal and serious to casual and fun. For example, “The Conversation Project” (theconversationproject.org) has a “Starter Kit” that walks you through how to start conversations with your family or doctor. The NHDD website provides links to official legal documents for your state, as well as games, such as “Hello” (commonpractice.com/hello), a conversation game about “living and dying well” that can be played by anyone of all ages. In other words, NHDD reminds us that it is never too early to talk about your health care preferences and you do not have to figure it out on your own.

I long to live in a world where people feel less awkward when talking about end-of-life health care decisions with their loved ones. The women on the plane was a fantastic model for me of one way (of many ways!) to talk about health care decisions. Consider recognizing April 16th as an opportunity to lessen discomfort you may feel about discussing these decisions. Show love for yourself and those you love to live the best life all the way through to the last moments.

Laura E. Bender is a 2nd year PhD student in Health Services Research at the University of Washington. 

by JoNel Aleccia, Kaiser Health News

Americans who want to ensure they have a say in how they die should examine the lessons of Oregon, a new analysis suggests.

Seriously ill people in that state are more likely to have their end-of-life wishes honored — including fewer intensive-care hospitalizations and more home hospice enrollments — than those living in neighboring Washington state or the rest of the country.

In 2013, nearly two-thirds of Oregonians who died did so at home, compared with fewer than 40 percent of people elsewhere in the U.S., according to the report published Wednesday in the New England Journal of Medicine. Previous research had shown that more than 85 percent of Americans say they’d prefer to die at home.

“Obviously, if you’ve spent decades trying to improve your end-of-life care, it’s pretty rewarding to see that something changes,” said Dr. Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health & Science University in Portland, who co-led the study.

The review analyzed Medicare fee-for-service claims data from 2000, 2005 and 2013, and it compared end-of-life care in Oregon and Washington — a nearby state with similar demographics and attitudes toward end-of-life care — with the rest of the U.S., excluding those two states.

It found that in 2013, ICU use in the last 30 days of life was about 18 percent in Oregon, compared with 23 percent in Washington and 28.5 percent in the rest of the U.S. Nearly three-quarters of patients in Oregon hospitalized in the last month of life were discharged to home, compared with slightly fewer than two-thirds in Washington state and a little more than half — 54.2 percent — in the rest of the U.S.

More than 40 percent of patients in Oregon were enrolled in home hospice in 2013, compared with about 30 percent in Washington and fewer than 20 percent in the rest of the U.S, the analysis found.

Oregon, which enacted the nation’s first death-with-dignity law and led the way on implementing portable medical orders for treatment at the end of life, may be reaping the results of those and other efforts, said Tolle’s co-author, Dr. Joan Teno, a professor of medicine, gerontology and geriatrics at the University of Washington in Seattle.

“When you look at the patterns, it’s very different than the rest of the United States,” she said. “It’s even different than a borderline state.”

Pat Duty, 64, who ran a Portland floor-covering business with her husband, Jimmy, for years, said Oregon’s palliative care culture helped guide treatment decisions after his 2013 diagnosis of lung cancer and dementia. Jimmy Duty wanted limited medical interventions; he had a do-not-resuscitate order, plus a request to avoid the ICU.

“He was very clear that quality of life was his first choice,” Pat Duty recalled. “We knew we needed to discuss these things while he could make decisions for himself. We wanted to give him the dignity and grace he deserved for his final couple of years.” He died in October 2015 at age 74.

Creating such a culture is much harder than it looks, Tolle and Teno argued. Oregon has successfully integrated awareness of end-of-life care at all levels, from state government and emergency care to individual decisions made by patients and their doctors.

“If patients’ goals are not linked to actionable care plans that are supported by local health care systems and state regulations, many patients who wish to remain at home will die intubated for all the reasons the current system fails them,” they wrote.

Across the U.S., there’s been a push to promote ways to indicate end-of-life treatment preferences, including advance directives, which provide guidance for future care, and Physician Orders for Life-Sustaining Treatment, or POLST, portable medical orders authorizing current care. Twenty-two states now have POLST programs and others are working on or considering them, said Tolle, who co-led the creation of POLST in the early 1990s.

But the researchers warned that, while POLST efforts are important, simply filling out the forms is not enough.

“We were highlighting that there’s no simple answer,” Tolle said. “You can’t just do one thing and think that you will change the culture of end-of-life care. It is a whole lot of work.”

Dr. Scott Halpern, a medical ethics and health policy expert at the Perelman School of Medicine at the University of Pennsylvania, has been a chief critic of POLST efforts, contending that there’s little evidence that the medical orders improve quality of life near death.

The new analysis by Tolle and Teno doesn’t fill the gap, he said. But he agreed with the authors’ contention that a focus on single interventions ignores the complexity of end-of-life decisions.

“Good end-of-life care involves physicians eliciting patients’ values, hopes and fears and making treatment decisions that align,” Halpern said.

The new analysis, which was funded by a grant from the Robert Wood Johnson Foundation, underscores that families and patients outside of Oregon must be vigilant to ensure they receive the care they want, Tolle said.

“The level of care you receive near the end of life depends more on the state you live in and the systems they have in place than your actual wishes,” she said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

by Midge Levy

 

Joanne was a life long King County resident who was active in education and community concerns. She served in the Washington State House of Representatives for the 32nd District from 1978 – 1993, with a particular interest in human services and the environment and during this time introduced three Right To Die bills.  She was introduced to the board of the Hemlock Society of WA State by her friend and neighbor, Barbara Dority, and was enthusiastically elected to the board in 1996.

The Hemlock Newsletter reported her statement as follows:  “During my tenure, I had the honor of working on legislation on end-of-life issues.  I had the privilege of supporting both my mother and my step-father at the end of their lives in 1994, and am now even more convinced of the need to control one’s destiny.”

Joanne chaired our Legislative Action Committee and served as a volunteer lobbyist, following bills that had relevance to our issue and working closely with the ACLU. She was invited by the National Hemlock Society to attend meetings and share her experience in attempting the passage of legislation in WA State.  Following the merger of our two organizations Robb remembers Joanne’s  invaluable assistance to him in keeping him informed of state political developments.

Sadly Joanne was diagnosed with Parkinson’s, she and Governor Booth Gardner were members of the same Parkinson’s Support Group.  She continued to attend board meetings for some years but struggled with her symptoms and communication became difficult although she appeared alert.  She will be remembered by those who were fortunate enough to know her as an outstanding leader in our movement who did a great deal to educate fellow legislators and pave the way for the passage of our Death with Dignity law.

by Jessica Nutik Zitter, The New York Times

Five years ago, I taught sex education to my daughter Tessa’s class. Last week, I taught death education to my daughter Sasha’s class. In both cases, I didn’t really want to delegate the task. I wanted my daughters and the other children in the class to know about all of the tricky situations that might await them. I didn’t want anyone mincing words or using euphemisms. Also, there was no one else to do it. And in the case of death ed, no curriculum to do it with.

When Tessa heard I’d be teaching sex ed to her fellow seventh graders, she was mortified. My husband suggested she wear a paper bag over her head, whereupon she rolled her eyes and walked away. When the day arrived, she slunk to the back of the room, sat down at a desk and lowered her head behind her backpack.

As I started in, 13 girls watched me with trepidation. I knew I needed to bring in the words they were dreading right away, so that we could move on to the important stuff. “Penis and vagina,” I said, and there were nervous giggles. A pencil dropped to the floor. With the pressure released, I moved on to talking about contraception, saying no, saying yes, pregnancy, sexually transmitted diseases, even roofies. By the end of the hour, hands were held urgently in the air, and my daughter’s head had emerged from behind her backpack.

Sexual education programming was promoted by the National Education Association as far back as 1892 as a necessary part of a national education curriculum. As information spread and birth control became increasingly available, unwanted pregnancies dropped, and rates of S.T.D.s plummeted. In this case, knowledge really is power.

I believe that this is true of death, too.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.

Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.

I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed.

I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.

Every year in my I.C.U. I see dozens of young people at the bedsides of dying relatives. If we started to teach death ed in high school, a student visiting a dying grandparent might draw from the curriculum to ask a question that could shift the entire conversation. She might ask about a palliative care consultation, for example, or share important information about the patient’s preferences that she elicited during her course. High school, when students are getting their drivers’ licenses and considering organ donation, is the perfect time for this. Where else do we have the attention of our entire society?

Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.

And then we presented the material another way. We taught them how to play “Go Wish,” a card game designed to ease families into these difficult conversations in an entertaining way. We asked students to identify their most important preferences and values, both in life and as death might approach. We discussed strategies for communicating these preferences to a health care team and to their own families.

We were delighted by their response. It didn’t take them long to jump in. They talked openly about their own preferences around death. One teenager told another that she wanted to make sure she wasn’t a burden to her family. A third said he was looking forward to playing “Go Wish” with his grandfather, who recently had a health scare.

Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.


Jessica Nutik Zitter practices critical care and palliative medicine at Highland Hospital in Oakland, Calif., and is the author of “Extreme Measures: Finding a Better Path to the End of Life.”

Reject Gorsuch: Aid in Dying

Washington state residents should be particularly concerned about the prospect of Judge Neil Gorsuch becoming a Supreme Court justice.
There are many reasons both to support or oppose his confirmation by the Senate, but one area of Judge Gorsuch’s history and judicial philosophy must be thoroughly examined. Judge Gorsuch has stated his opposition to laws which permit terminal patients to hasten their death with physician assistance — laws including Washington’s own Death with Dignity Act, passed by initiative in 2008, with almost 60 percent of the vote. Judge Gorsuch authored a book in 2006, “The Future of Assisted Suicide and Euthanasia,” in which he argued that terminally-ill patients do not have a right and should not be permitted the choice to hasten their own death with their doctor’s assistance, regardless of their suffering. To permit this, he argues, is immoral.
End of Life Washington (formerly Compassion & Choices of Washington), which drafted the 2008 initiative and monitored and oversaw its implementation, can attest that our law has helped many Washingtonians choose a peaceful, dignified death and that the imagined abuses foreseen by opponents of the law have not come to pass.
It is possible that death with dignity cases may come before the Supreme Court again, as one did in 2006 when President Bush and Attorney General John Ashcroft challenged Oregon’s law. In Gonzalez v. Oregon, the Court’s majority ruled in favor of Oregon, but that outcome is not guaranteed in the future if Judge Gorsuch advocates and votes for a different result.
The Senate must press the nominee to affirm that he will not interfere with states’ laws which give freedom of choice to their citizens. This issue affects not only Washington and the five other states — California, Oregon, Colorado, Vermont and Montana — which have legalized aid in dying, but the many other states which are considering passing similar freedom of choice laws for their citizens.

Robert Free, president, End of Life Washington

by Ann Brenoff – The Huffington Post

The title of the 2009 book written by Neil Gorsuch, President Donald Trump’s pick to fill the conservative shoes of Justice Antonin Scalia on the Supreme Court, pretty much says it all. It’s called, The Future of Assisted Suicide and Euthanasia. Not “death with dignity,” mind you, but “assisted suicide,” which is how Gorsuch sees it ― and he’s clearly not a supporter.

In his book, Gorsuch upholds the principle of patient autonomy but makes the case against legalization of the practice of terminally ill patients taking the reins of their own deaths. Gorsuch wrote that “human life is intrinsically valuable and that intentional killing is always wrong.” He maintains that while a patient’s refusal of unwanted medical treatment is morally acceptable, any intentional efforts to accelerate death are immoral.
By deeming the practice “assisted suicide,” he leaves no doubt about where he stands.

Alarmed that death with dignity measures have gained popular support and legal standing, The Federalist heralded Gorsuch’s nomination as “a great relief to have a legal expert who stands with human dignity on the Supreme Court,” citing his book for building “a case against legalization based on moral and legal arguments.”
Of course, the response from those who feel quite the opposite about death with dignity came just as quickly.

Sen. Ron Wyden (D-Ore.) voiced “serious concerns” about the Supreme Court nominee Tuesday, saying in a statement that Gorsuch’s “opposition to legal death with dignity as successfully practiced in Oregon is couched in the sort of jurisprudence that justified the horrific oppression of one group after another in our first two centuries.”
Death with dignity laws essentially allow qualified terminally ill adults to voluntarily hasten death. The practice is legal in California, Colorado, Oregon, Vermont, Montana and Washington.

The issue grabbed the national spotlight when Brittany Maynard, a California native suffering from terminal brain cancer, moved to Oregon (the first U.S. state to legally allow physician-assisted suicide) to be able to end her life. Before her death at age 29, on Nov. 1, 2014, she lobbied for California and other states to legalize doctor-assisted suicide, and her family has continued to advocate for the cause.

A 2015 Gallup Poll found that 68 percent of Americans believe doctors should be legally allowed to assist terminally ill patients in committing suicide. Now, if someone could just convince this prospective Supreme Court justice.

 

By Karen Shakerdge – Side Effects Public Media/Kaiser Health News

At 44, Dave Adox was facing the end of his two-year battle with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.

He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.

“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet.

“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.

Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, N.J., where Adox often had been treated, and have his ventilator disconnected. The doctors there had reassured Adox he could ask to come off the ventilator anytime.

In May, his family and friends flew in from around the country, and joined neighbors for a celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”

Their plan suddenly changed when University Hospital’s attorneys intervened.

“At the eleventh hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox said. “I was crushed.”

Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physician-assisted death or euthanasia, the key being that the patient is already in the hospital.

But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.

Dr. John Bach, a professor of physical-medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician. Bach understood and approved of his patient’s plan to end his life and share his organs.

“I could have given (him) a prescription for morphine and he could have been taken off the ventilator at home,” Bach said. “But he wanted his organs to be used to save other people’s lives.”

Other physicians at the hospital supported Adox’s plan. “We have an ethics committee that approved it 100 percent,” Bach said. “We have a palliative-care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”

University Hospital officials declined requests for comment, but Bach said the hospital’s attorneys were concerned about liability.

“The legal issue is: What is euthanasia?” Bach said. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”

Advance directive

Previously, hospital employees had helped Adox complete an advance directive that stated, “I do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.”

Having an advance directive on file is especially important for ALS patients, Bach said, because they can eventually become “locked in,” unable to express their wishes.

“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach said. “You cannot move your eyes; you cannot move your tongue; you cannot move your facial muscles at all. You cannot even wink to say yes or no.”

In this case, the hospital wouldn’t have had to rely on the directive, Bach noted; Adox was capable of expressing his wishes clearly. It troubled the physician that his patient’s wishes could not be met.

“Myself and all the other doctors that took care of him in the hospital were almost as upset about it as he and his husband were,” Bach said.

Dr. Joshua Mezrich, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations — even though such cases are rare.

Mezrich acknowledged this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he said.

“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible, keeping them alive no matter what,” Mezrich said. “Sometimes, it means letting them have the death that they want, and it means letting them give this gift, if that’s what they want.”

Planning one’s death to allow for organ donation raises some thorny questions, said Arthur Caplan, director of the division of medical ethics at New York University and author of “Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans.”

Typically, a separate team of physicians or an organprocurement team discusses donation with relatives after a patient dies, to avoid any hint — whether real or perceived — of coercion or conflict of interest, Caplan said.

“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he said.

This issue may get bigger, Caplan said, as states move to legalize physician-assisted death. There has been little public discussion because, “It’s too controversial,” he said. “If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan said.

That approach would have a downside, too, he continued. People might perceive doctors as more focused on “getting organs” than caring for dying patients.

There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.

About a year ago, a patient with ALS wanted to donate her organs, but the hospital wasn’t able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and that considers technical matters such as transportation or insurance coverage.

“Obviously, we’re all sensitive to any perception of assisted expedition of death,” said Dr. William Rilling, vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”

Hospitals contacted

After University Hospital declined to admit Adox, he and his husband contacted six other hospitals through various intermediaries. They waited for days to hear back.

In the end, LiveOnNY, an organprocurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at home to vet his suitability as a donor.

“There was a hospital partner,” Friedman said, “that felt very supportive of this circumstance, understood the challenges that they would be faced with, (and was) prepared to be supportive of what Dave wanted and would be able to provide a bed.”

On the palliative-care floor at Mount Sinai Hospital in New York on May 18, Adox and Michaeli prepared to say their goodbyes.

“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounted, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation, they disconnected his breathing machine.”

In the end, Adox’s wishes were met; he was able to donate his liver and kidneys. Michaeli said he felt “an incredible swelling of gratitude” to the hospital team that helped make that happen.

“The person we were trying to do a direct donation for was a match,” Michaeli said. “And he has Dave’s kidney right now.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation. This story is part of a partnership that includes Side Effects Public Media, NPR and Kaiser Health News.

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