[F]or many years now, pollsters have asked Americans where they would rather die, in home or in a hospital.
Once the initial shock of the question wears off (“Who said I was going to die in the first place? How dare you!”), most of us answer that we would prefer to die at home, in familiar settings, surrounded by loved ones. It makes sense.
Then, of course, most Americans go off and die in the hospital, in large part because they haven’t made their end-of-life wishes known to people who might have to make those decisions. (Or, in the alternative, because they haven’t thought that much about their end-of-life decisions in the first place.)
Oregon is an exception. And that’s a good thing.
recent article in The New England Journal of Medicine noted that nearly two-thirds of Oregonians who died in 2013 did so at home, as opposed to 39.6 percent of Americans. (The article relied on statistics from Medicare and defined “home” as wherever the person was living at the time of death.)
The article, by Dr. Susan W. Tolle, head of the Center for Ethics at Oregon Health & Science University, and Dr. Joan M. Teno of the University of Washington, had other good news for Oregon residents who might die someday:
The rate of intensive care unit use in the last 30 days of life in Oregon was 18.2 percent, as compared with 23 percent in Washington state and 28.5 percent in the rest of the United States.
Patients who were hospitalized in the last month of life were more likely to be discharged to their homes in Oregon (73.5 percent) than in Washington (63.5 percent) or in the rest of the United States (54.2 percent).
These numbers likely will not surprise anyone who’s followed Oregon’s efforts to lead the way in the tricky issue of end-of-life care. In their article, Tolle and Teno argue that one big step forward came in 1995, when Oregon created a POLST program.
POLST is an acronym for Physicans Orders for Life-Sustaining Treatment; the program essentially allows patients to document their preferences regarding the use of life-sustaining treatment. Ideally, medical providers have access to a patient’s POLST documents and abide by their instructions.
But just having a POLST program in place is not enough, the article notes: After all, Washington state has a similar program, but it trails Oregon in some of the metrics that Tolle and Teno were tracking.
The difference between the two states? At the risk of oversimplifying, a lot of it comes down to execution and follow-through.
In the decades since Oregon adopted the POLST program, the state has developed educational materials about it, organized conferences to spread the word, researched the issue and (perhaps most importantly) maintained a statewide registry of POLST participants. That electronic registry allows medical providers throughout the state to access it to check on a patient’s wishes at the end of life; that’s important because those patients may not always be able to speak for themselves.
Washington had a registry in place, but abandoned it because it wasn’t widely used.
Oregon’s POLST system isn’t perfect: For example, Tolle and Teno note that one-click access to the POLST form from a patient’s electronic medical records is not yet available in most hospitals. We need to keep measuring our progress and improving our systems.
Perhaps the best part of filling out the POLST forms is that it provides a starting point for conversations that are easy to put off. No one likes talking about death. But talking about it now might help ensure that we can die on our own terms.
That’s because, according to a new study, your surrogate may still not have a clear idea about what you really want done in a crisis situation — even after you’ve discussed your wishes with them.
In the study, seven out of every 10 surrogates didn’t have an accurate understanding of their loved one’s wishes regarding potentially life-altering medical treatment, even though both believed they had adequately discussed the topic.
“There were a lot of surrogates in those pairs where they both said, ‘yes, we’ve had this communication,’ who didn’t have a good understanding of the patient’s goals of care,” said lead researcher Dr. Terri Fried. She is a professor of geriatrics with the Yale School of Medicine.
The surrogates couldn’t accurately say whether their loved one would want treatment even if afterward they would have to live in extreme chronic pain or with severe mental or physical impairments, Fried said.
“Those are the kinds of things that make people say, ‘Oh, maybe I don’t want to get life-sustaining treatment if that’s the way it’s going to leave me,’” she explained.
These results show health-care professionals need to take a more active role in helping patients make end-of-life preparations, and that includes facilitating in-depth conversations between them and their chosen surrogates about their preferences, Fried said.
“It’s becoming more a part of the responsibility of primary care to make sure this happens as part of health maintenance, the same as flu shots or cancer screening,” Fried said. “We need to do a more thorough assessment of what patients have done and haven’t done, so we know what they still need to do.”
For their study, Fried and her colleagues interviewed 350 veterans, all aged 55 or older. The researchers also separately interviewed their end-of-life surrogates.
Just over half of the surrogates were spouses. Another 27 percent were children. The rest had other relationships with the veterans, according to the study.
About two of every five veterans hadn’t bothered to complete a living will or officially designate someone as their surrogate (health care proxy), or talked about the quality of life they’d like to maintain near the end, the findings showed.
And often, surrogates remained in the dark about the loved one’s wishes even if both agreed that they had discussed the matter.
Only 30 percent of surrogates who thought they’d talked it over could display an accurate knowledge of their loved one’s desires regarding quality versus quantity of life, the researchers found.
That’s better than the performance of surrogates who hadn’t had the conversation (21 percent) or pairs that disagreed whether they’d discussed the matter (15 percent), Fried noted.
But that still leaves a majority of people in a position of thinking that their surrogate knows their wishes when the person really doesn’t, the study authors pointed out.
“Part of it is that patients and surrogates don’t really know what the things are that they ought to be talking about,” Fried said.
In joint interviews conducted after the main study, many of the pairs said that “after you asked us those questions, we realized these are the things we need to sit down and talk about,” she added.
Dr. Timothy Farrell is an associate professor of geriatrics with the University of Utah School of Medicine in Salt Lake City. He said that “a visit with a physician is often the first time that such a discrepancy may become apparent.”
Doctors who treat the elderly should consider end-of-life conversations as “anticipatory guidance,” similar to the guidance provided parents during well-child visits, Farrell said.
Either a doctor, a physician assistant, a social worker or some other health-care professional can help lead a facilitated discussion that ensures someone’s wishes have all been communicated to the surrogate, he suggested.
“Being proactive is the key, [as is] regularly coming back to this topic before the crisis occurs,” Farrell concluded.
The study was published March 20 in the Journal of the American Geriatrics Society.
[M]ost Americans are unprepared for the worst to happen—an accident or an unexpected illness that leaves them brain dead, but still alive. That’s what happened to Terri Schiavo, a young woman who became comatose after suffering a heart attack in 1990.
Schiavo was kept alive by a feeding tube for fifteen years. During that time, her husband tried to withdraw the feeding tube, but was adamantly opposed by Schiavo’s parents, Congress, and President George W. Bush. After a highly publicized legal battle, the feeding tube was finally removed and Schiavo died two weeks later. This protracted battle might have been avoided, if Terri Schiavo had completed a document known as an advance directive.
Post-Terri Schiavo
81-year old Leah Brueggeman wants her intentions made clear, in the event she is unable to express her wishes for medical treatment. She and her husband live in La Crosse, Wisconsin and they completed their six-page advance directives in 2009 with the help of an attorney. “We don’t want to be put on feeding tubes indefinitely,” says Leah. “If there’s no chance of recovery—just let us go!”
The advance directive is a legal document that has two parts. One specifies the kind of medical care a patient wants if he is no longer competent. For example, CPR if his heart stops, feeding tubes if he can no longer eat on his own, IV fluids for hydration. Or he can refuse any or all of these interventions. The patient also designates someone trusted who can make medical decisions on his behalf if he is unable to.
The Schiavo case brought more public attention to the importance of having an advance directive. But that interest quickly receded. Today, only a third of all Americans have completed an advance directive. Dr. Ruma Kumar, a palliative care specialist and regional medical director with Kaiser Permanente of Northern California, says that many patients are too afraid to plan for their future health care and their doctors are often reluctant to bring up planning. According to Kumar, doctors don’t have the time to engage their patients in extended end-of-life conversations. “Or if you bring up planning, you might make the patient nervous that you’re giving up hope in their treatment plan,” she says.
Limits of advance directives
But even if an advance directive is completed, a patient’s stated wishes may not always be carried out. The document can get overlooked, misplaced, or ignored by medical staff, as Katy Butler found out. “Hospitals are a world of their own,” says Butler. “It’s like a foreign subculture. And once you enter into that system, it can be very, very difficult to get your wishes put into practice.”
Butler is a Bay Area journalist who wrote the best-selling memoir “Knocking on Heaven’s Door: The Path to a Better Way of Death.” In her book, Butler described her own difficult experiences, trying to get her father’s advance directive enforced. She recalls going up against a wall of resistance when his physician refused her request to withdraw treatment for her dying father.
Butler’s father was 79 when he suffered a major stroke in 2002, which caused brain damage and dementia. He had a weak heart and Butler says he probably would have died of natural causes within two years following the stroke. But his pacemaker kept him alive for the next six years. In her memoir, Butler says that the extra years of life caused him great misery. “The tipping point had come,” she writes. “Death would have been a blessing and living was a curse.”
As her father’s designated medical agent, Butler went to his cardiologist and requested that the pacemaker be turned off. “The doctor not only refused to cooperate—he really treated us as if we were some kind of moral monster,” Butler says. “Technically according to the law, you have the right to refuse any form of medical treatment and you have the right to request the withdrawal of any form of medical treatment. But you’ve got an advanced device like a pacemaker—you don’t know how to turn it off. You don’t know where to go to get someone to help you turn it off if your cardiologist is saying no.”
La Crosse, Wisconsin—the best place to die in America
One place Katy Butler might have gone for help was La Crosse, a small city on the Mississippi River in Wisconsin. La Crosse is known for its steamboats, Wisconsin cheese, and its excellent end-of-life care. La Crosse is the home of the Gundersen health system, ranked in the top one percent of hospitals nationwide. An astounding 96 percent of all La Crosse residents who died last year had completed advance directives. That figure far exceeds the number of people who complete advance directives in the Bay Area and the rest of the country.
Dr. Bud Hammes, Gundersen medical ethicist
Dr. Bud Hammes, a medical ethicist at Gundersen, led the effort to improve end-of-life care in La Crosse. The key to success, says Hammes, was creating a supportive culture of person-centered care that honors a patient’s goals and values. “It isn’t just about training a few people to have these conversations with patients,” Hammes says. “It’s actually about changing the culture of the health care system and ultimately of the community.”
To change the culture at Gundersen, Hammes convinced hospital administrators in the late 1980’s that end-of-life care needed to be given higher priority. An electronic medical record system was created to document patient preferences. That way, advance directives are easily accessible and can’t get lost.
End-of-life conversations and advance directives are now part of the hospital’s routine practice. Michael Sigmund is a long-time La Crosse resident and patient at Gundersen. He explains,“It’s the nurse who asks the question when you first walk in the door. ‘How are you doing? You have any pains today? Do you have an advance directive?’”
Michael Sigmund (far left) at La Crosse Coffee Shop
Others come to Gundersen to complete their advance directives because of peer pressure from friends and family. Karen (who did not want her last name used) sought out the assistance of Gundersen facilitator Janet Olmstead for help with her advance directive. Karen put off this visit for many years, but finally overcame her hesitancy after speaking with a friend. “I don’t want somebody else stuck with making decisions,” she says. “It’s a burden for them to make decisions that they don’t know what I want. So I just thought, ‘now is the time.’”
Karen and Janet Oldstead, a Gundersen advance care planning facilitator
Karen says she doesn’t want heroic measures or life-prolonging treatments if she’s no longer functional. Like Karen, many of Gundersen’s patients want medical treatments stopped if there’s little or no hope of recovery. Honoring patient preferences has resulted in fewer tests and expensive procedures. “We are very successful in outcomes in decreasing the costs at the end of life in comparison to lots of other systems,” says Gundersen CEO Dr. Scott Rathgaber, “I can tell you that’s millions of dollars that are left on the table because of our commitment to the patients.”
The Gundersen program was so successful that Hammes took it city-wide. In the early 1990’s, Gundersen partnered with the other three local hospitals and formed a coalition called “Respecting Choices”. It brought churches, social service agencies, and nursing homes together and trained their staff to do community education and outreach. This concerted 25-year campaign has done much to raise public awareness around end-of-life planning and advance directives.
The La Crosse model comes to the Bay Area
Inspired by La Crosse’s success, Kaiser Permanente worked with Gundersen and started its own Life Care Planning program in 2012. Among its goals is to increase the number of patients completing advance directives. Over 600 physicians, nurses, and social workers have now been trained as facilitators. Kaiser palliative care specialist Ruma Kumar says much of what Kaiser did was modeled after the Gundersen program. “We’re hoping to do the same thing over the next eight to 10 years,” she says. “To get greater than 90 percent of our patients with planning done.”
But replicating the Gundersen model throughout the entire Bay Area presents huge challenges. Bringing together all the hospitals and the hundreds of churches, senior facilities, and social service agencies would be extremely difficult and expensive. In addition, the Bay Area has a much larger, diverse population with multiple languages and cultures. Without language-proficient facilitators, outreach to all sectors of the Bay Area would be nearly impossible.
Educational outreach efforts largely depend on volunteers organizations like the East Bay Conversation Project, a community-wide coalition working to help people plan their preferences for care at the end of life. At a recent gathering in Berkeley, Alison Rodman and two other volunteers talked to a group of seniors on how to complete an advance directive. She tells them that forms are available on-line. “It’s a pretty simple document that’s legal and you don’t have to go through great expense by using a lawyer or having it notarized,” Rodman explains.
Don’t wait until it’s too late
La Crosse resident Leah Brueggeman is glad her family didn’t wait. “And of course, we don’t like to think of death and dying but—it happens,” she says. Several years ago, Leah’s husband Jim made the decision to stop medical treatment for his ailing mother. But following her death, Jim had second thoughts. “I came home and my husband—he was just nearly sobbing. He was just distraught,” Leah recalls, “He said ‘I killed my mother.’ He said ‘We stopped her medication.’ I said ‘That’s what she wanted.'”
Leah Brueggeman
Unbeknownst to Jim, his mother had filled out an advance directive. Leah went to his mother’s assisted living facility and found a copy of it. “We got it out. Her wishes are right here: no medication blah blah blah,” Leah says. “I took that home and said ‘Honey, take a look at this. This is what your mother wanted. You’re not killing her.'”
Jim stopped agonizing over his mother’s death, now that he no longer had to guess at what she wanted. Thanks to her advance directive, Jim and Leah were able to avoid the guilt and conflict that had torn apart the family of Terry Schiavo over 20 years ago.
[T]he loss of a loved one is always a somber experience, but thankfully, due to the continuing advancements in health services, the number of Americans that are able to spend their final days in a comfortable and controlled setting is growing.
End-of-life care allows individuals to experience that final chapter in life with a dignified and calm feeling, as well as offer family members that peace of mind, support and a sense of comfort that can help ease that sorrow during this time. Being informed and conscious of this subject makes taking those steps in coordinating this care much easier and straightforward for everyone involved.
When is it time?
There are many conditions in existence that over time can become increasingly difficult and expensive to treat. This not only can be a burden for the patient, but can also create a painful and challenging experience as well. While deteriorating conditions and intolerable discomfort are two chief concerns when considering hospice care for a loved one, things such as complicated health care needs, sustained pain, and loss of mobility or capacity are also matters that should be taken into account.
It is hard to decipher the “right time” when deciding to make the decision to begin end-of-life care. Each and every family has a different approach and belief that can affect their decision. Ultimately, this choice is one that is deeply personal and involves tough choices for the whole group.
What does end-of-life care look like?
There are several types of end-of-life care available. Hospice care is for individuals that are nearing the end of their lifetime, with a terminal prognosis of six months or fewer. Palliative care is one that is more fitting for older adults living with a chronic condition and are in need of relief from the on-going pain and symptoms. In some cases, families may also choose to provide end-of-life care from home.
In either case, a full team of medical professionals and support staff work around the clock to make sure that patients are as comfortable and well-cared for as possible. Every facility is different, which means that nurses and doctors may be supported by home health aides, spiritual counselors and social workers depending on the circumstance.
With that being said, there are people dedicated to helping family members navigate this new challenge and providing guidance with whatever might come next.
Paying for end-of-life care
The Kaiser Family Foundation reported that hospice care is covered by Medicare for eligible older adults, usually individuals with a terminal diagnosis. This organization makes affording end-of-life care easier for many families.
Other than that, Medicaid, private insurance and other sources of payment such as a pension or retirement fund may be used to pay for these services. Families should discuss different payment models and work with a knowledgeable provider to uncover all available options.
Selecting the right partner
One thing families should understand when facing the possibility of end-of-life care is being aware of all available resources available that offer support and guidance during this difficult time. The care professionals at Sunrise Senior Living can advise and help coordinate care for an older loved one. With the help of Sunrise, the best, most appropriate end-of-life care can be identified and any transition can be made as smooth and as comfortable as possible.
[T]he new year is a good time to put making end-of-life wishes at the top of your to-do list.
It’s a perfect time to tell family and friends your health-care preferences in case one day you’re unable to speak for yourself. This advance care planning is good for your peace of mind and for your loved ones, too.
Studies show that people who have conversations about their end-of-life preferences are much more likely to be satisfied with the care received. And their caregivers are less likely to suffer from depression or be left wondering if they made the right decisions for their loved ones.
The majority of those nearing end of life are often unable to make decisions for themselves. Yet a recent poll found that only half of Canadians had discussed their wishes with family or friends – and only 10 per cent had discussed the topic with health-care providers
So here are four steps to help guide conversations about your advance care plan:
1. Reflect on what makes life meaningful for you
What do you value most about your physical and mental health? For many, this includes independence, interacting with family and friends, and favourite hobbies. Now imagine what might make life unacceptable for you.
Modern medicine can and will prolong life in many cases. But it can also mean prolonging the end of life and may require living with severe limitations, such as reduced mental capacity, loss of ability to control bodily functions, lack of mobility and loss of privacy. This is unacceptable to many people; one study found that over half of seriously-ill patients in hospital would rather not be kept alive on life support when there is little hope for a meaningful recovery.
Advance care planning is typically thought about in the context of advanced age or specific diagnoses such as cancer. However, it’s important for everybody to do, and particularly for those with multiple medical problems and frailty. While frailty increases with age, it can occur at any age and increases the chances of dying. Although catastrophic illness can occur at any time, frailty increases the likelihood that end of life is nearing and when life-prolonging procedures may not be appropriate or effective.
While many people reaching the end of life say they want to die at home, without an advance care plan, they are often trapped in hospital enduring heroic procedures rather than receiving comfort care during the little time they might have left. Comfort care includes pain and symptom management to prevent or relieve suffering at the end of life
2. Find out your care options and choose a substitute decision maker
Learning about care procedures for end of life will help inform your advance care plan. You can find some common medical and legal terms at advancecareplanning.ca. And talk to your doctor.
Many sick or elderly people worry about being a burden to their families. The good news is that patients who have end-of-life conversations place less of a strain on caregivers, and are more likely to receive hospice care or palliative support at home.
Think about and designate a substitute decision maker. This is someone you trust to make health-care decisions based on your wishes in the event you can’t make them.
3. Talk about your wishes
Talk to your substitute decision maker, loved ones and your doctor
Your loved ones will be grateful that you spoke up. When patients have an advance care plan, their families are much more likely to know that their loved one’s wishes were known and followed. Lack of planning has been shown to leave families less satisfied during terminal illness or in the months following death.
There are many ways to get the conversation started and it doesn’t have to be grim. The pallimed.org blog recommends humour as a useful strategy. It may take a few tries to be heard but don’t give up
4. Write it down – just like a will
Once you’ve arrived at a plan, write it down and make sure everyone knows. In particular, make sure that health-care providers and institutions are aware and have noted it in your chart. At present, patient preferences are only known in a minority of cases.
Canadians are living longer and healthier. A little planning can ensure the well-being of you and your loved ones at the end of life as well.
You’ve probably already written a will for your things, so why not write an advance care plan for yourself?
‘Tis the season for gift giving and the odds are good that you received one you didn’t really want, like the proverbial gaudy tie, the useless kitchen contraption, or the itchy misshapen sweater. It’s the thought that counts, right?
When getting what you want — the right medical care at the end of your life — really matters, getting what you don’t want is the rule rather than the exception. I have studied end-of-life care for more than 25 years. Here are a few key points I’ve learned from my research and from extensive interviews with caregivers of all backgrounds and experiences:
The vast majority of Americans say they would prefer to die at home, surrounded by loved ones. But most of us die alone in a medical institution of some kind, fading away in a technological cocoon that could not be further from the setting most of us would prefer.
Most of us would like to face as little pain as possible at the end of our lives. Yet more than half of us suffer with moderate to severe pain and other completely controllable symptoms in our dying days.
Individuals who have experienced hospice care give it glowing reviews. Unfortunately, only about half of Americans are referred to hospice as death draws near, and many of those who enter hospice do so during the last few days of life, too late to take full advantage of all that it has to offer.
For those who are left behind, regrets and second-guessing all too often cloud the roles they played and the decisions they helped make about managing a loved one’s final days.
During this season of giving, what better gift could you give those you care for — and those who will care for you — than the peace of mind that comes with knowing the kind of care you and they want at the end of life? You don’t need a lawyer or a formal document to express these wishes: a simple conversation is actually best. In addition to giving peace of mind to those you love, such a conversation can substantially increase the chances you will get what you want at the end of life, all without spending a dime.
How can you remember to do this? Use as reminders any gifts you got this holiday season that you didn’t really want. Keep in mind that such gifts were given with the best of intentions. Well-intentioned but misguided choices about end-of-life care may be in your future unless you spend some time having heart-to-heart conversations with those you love about what is important to you when that time comes.
It’s important to have the same conversation with your doctor. Most doctors are no more comfortable talking about end-of-life care than you are, and all too often avoid the subject. So do them the favor of starting the conversation yourself — they will generally be relieved and more than willing to help walk you through the options.
Letting your loved ones know exactly what you want for that last big holiday and giving your doctor permission to talk about end-of-life options could end up being the best gift you ever give — and get.
Dave Adox, right, and his husband Danni Michaeli at their home in South Orange, N.J., in the fall of 2014. Adox was diagnosed with ALS at age 42 and became almost totally paralyzed within six months. He died last May.
[A]t 44 years old, Dave Adox was facing the end of his two-year battle with 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. Adox had spent a career with words that now came slowly — he was a freelance reporter, including for public radio, then went on to work in advertising.
“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, where Adox often had been treated, and have
Family members surround Adox on the day that he died last May. His wish to die in a hospital so that he could donate his organs turned out to be difficult to fulfill.
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 big 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.”
But their plan suddenly changed when University Hospital’s attorneys intervened.
“At the 11th hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “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 suicide 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, and 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 says. “But he wanted his organs to be used to save other people’s lives!”
Other physicians at the hospital supported Adox’s plan, too.
“We have an ethics committee that approved it 100 percent,” Bach says. “We have a palliative care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”
Adox before he was diagnosed with ALS. He decided to become an organ donor so that other people could enjoy a longer life.
University Hospital has declined several requests for comment, but Bach says the hospital’s attorneys were concerned about liability.
“The legal issue is: What is euthanasia?” Bach explains. “Are you killing a patient by taking him off a respirator that’s keeping him alive?”
Adox had 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 says, 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 says. “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 particular case, the hospital wouldn’t have had to rely on the directive, Bach noted: Adox was still fully capable of expressing his wishes clearly. It deeply troubled the physician that his patient’s wishes could not be met.
“Myself and all the other doctors who took care of him in the hospital were almost as upset about it as he and his husband were,” Bach says.
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 acknowledges this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he believes.
“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 says. “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.”
Adox and Michaeli with their son, Orion, in the winter of 2015.
Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones — whether real or perceived — of coercion or conflict of interest, Caplan points out.
“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 explains.
This issue may get bigger, Caplan believes, as states move to legalize physician-assisted death. Although, so far, there has been little public discussion because “it’s too controversial.”
“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 says.
But that approach would have a downside, too, he continues. People might perceive doctors as more focused on “getting organs” than caring for dying patients.
Adox takes one last walk with family and friends in New York’s Central Park before going to a hospital to be disconnected from the ventilator that kept him alive.
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 there, 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 considers technical matters such as transportation or insurance coverage.
“Obviously we’re all sensitive to any perception of assisted expedition of death,” says 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.”
After University Hospital declined to admit Adox, he and his husband reached out to six other hospitals through various intermediaries. They waited for days to hear back.
In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.
“There was a hospital partner,” Friedman says, “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.”
Finally, on the palliative care floor at Mt. Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.
“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounts, 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.”
And in the end, Adox’s wishes were met — he was able to donate his liver and kidneys. Michaeli says he felt “an incredible swelling of gratitude” to the hospital team who helped make that happen.
“The person we were trying to do a direct donation for was a match,” Michaeli says. “And he has Dave’s kidney right now.”
