Learning to talk about death and dying should start early in doctors’ careers

By Junaid Nabi

[W]hen I started medical school, I fully expected to learn how the nervous system works, why heart attacks happen and what to do to stop them, and how the immune system sometimes turns against the body and causes autoimmune diseases. One of the things I needed to learn but didn’t was how to talk with people about death and dying.

To fill that gap, I enrolled in a course at Harvard Medical School on communication strategies during end-of-life care. It was designed to help budding physicians understand how spirituality, end-of-life care, and medicine interact. What I learned surprised me.

I found out that I wasn’t alone in feeling that I was ill-prepared for having effective end-of-life conversations. Physicians in general tend to be particularly limited in their ability to discuss issues such as how long patients will survive, what dying is like, or whether spirituality plays a role in their patients’ last moments.

At first glance, physicians’ poor understanding of death and the process of dying is baffling, since they are supposed to be custodians of health across the lifespan. Look deeper, though, and it may reflect less the attitudes of physicians themselves and more the system that nurtures them. After all, we train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death.

At one of the seminars that are part of the course, a young man was asked about how he felt during the final days of his mother’s struggle with cancer. “Pain is not suffering if it has a meaning; if it doesn’t, pain and suffering are the same thing,” he said.

That juxtaposition of pain and suffering struck me as an important reminder of the vital role physician communication plays from a patient’s point of view. I realized that a transparent communication strategy can ease suffering and make pain more bearable.

In the process of my coursework, I also realized that significant communication barriers exist between physicians and patients to discussing end-of-life care. When physicians aren’t trained about how to approach patients and their families regarding end-of-life decisions, it’s difficult, if not impossible, to provide the care they want and need.

In one survey, nearly half of the medical students and residents who responded reported being underprepared to address patient concerns and fears at the end of life. About the same percentage said that “dying patients were not considered good teaching cases.” In other words, patients on palliative care with no need of further interventions were seen as offering little in the way of imparting clinical knowledge — even though they might have been wonderful cases for learning more about death and dying.

It’s still unclear whether such limitations arise from personal difficulty talking about this sensitive topic, an inadequate medical curriculum, or a lack of training during residency on how to communicate with terminally ill patients.

When a robust rapport between patient and physician is lacking, or when a physician hasn’t taken enough time to lay out all the options, hospitals tend to follow the “standard” protocol: patients — often at the insistence of family members — are connected to several intravenous lines and an intubation tube, or put on life-support machines, all because the patient or the family never had a clear conversation with the medical team about the severity of the disease and its progression.

That’s not how physicians prefer to die. In a famous essay, an experienced physician wrote that most doctors would prefer to die at home, with less aggressive care than most people receive at the ends of their lives. They understand that such efforts are often futile and take away from the precious time that could be spent in the company of family and friends.

Intensive management of patients with poor prognosis can result in severe emotional damage to patients and their family members. They also have significant policy implications: On average, 25 percent of Medicare payments go to patients in the last year of life, with one-third of that spent in the last month, often on clinical services with negligible benefits.

Physicians certainly share some of the blame for these gaps in communication. But we need to be aware of the role health care systems play in shaping end-of-life interactions. Over-treatment is often encouraged, and with little guidance or feedback on how to navigate end-of-life care, physicians can feel vulnerable to malpractice lawsuits. Due to ever-changing regulations, most interns, residents, and attending physicians are forced to spend more and more time typing into their patients’ electronic health records and less time sitting with their patients, talking with them and understanding what they want and need at the ends of their lives. The issue of resource allocation may also play a role. Medical centers often suffer from a shortage of physicians, and struggle to balance comprehensive teaching with quality patient care.

Complete Article HERE!

After Great Pain, Where Is God?

An etching from “The Book of Urizen,” by William Blake.


[T]hese days I find I’m more alert to the grief and sorrow around me than I once was. In part it’s a product of my age, of youth giving way. I’m guessing my situation is not that different from many of yours.

Last month I checked in on a childhood friend whose 13-year-old son committed suicide last year after struggling with a brain injury. He told me, “I’ve stopped crying every day, which is a major transition.” He added, “I spent more than a year trying to get him well and keep him alive, and only in recent days have I finally, mostly, lost that mode of thinking. I don’t have to do anything now because I can’t.” Yet in his dreams, my friend said, his son is still alive and he’s checking on him to make sure he’s O.K.

Another lifelong friend recently died of colon cancer. His wife wrote to me: “I wish I could tell you that we are walking this journey with courage and faith, but that really doesn’t describe our situation at all. The outward courage feels like a ruse to convince ourselves that this immense pain will subside in time, and the weakness of our faith is showing us its shallow limits.”

Sometimes the struggles are not about death but things like addiction. Two weeks ago I spoke to a friend whose wife had told him she no longer wanted to be married to him because of his relapse into alcoholism, which he described as a “deep, dark struggle” that robbed him of his true personality. (He’s now in recovery, trying to rebuild his life.)

Stories like these are hardly the whole of life, and most of the people I know are in a pretty good place. Yet every life has a story, and every story is marked by pain, loss and sorrow. Sometimes we suffer; other times we have to watch people we love suffer. Each situation is difficult in its own way.

I’m no theologian. My professional life has been focused on politics and the ideas that inform politics. Yet I’m also a Christian trying to wrestle honestly with the complexities and losses in life, within the context of my faith. And while it’s fine for Christians to say God will comfort people in their pain, if a child dies, if the cancer doesn’t go into remission, if the marriage breaks apart, how much good is that exactly?

During 1940 C. S. Lewis wrote “The Problem of Pain.” Lewis’s answer to why an all-good and all-powerful God would allow his creatures to suffer pain was a bit too neat and tidy. Among other things, he wrote, “God whispers to us in our pleasures, speaks in our conscience, but shouts in our pain: It is His megaphone to rouse a deaf world.”

Now flash forward two decades to the publication of “A Grief Observed,” which Lewis wrote after his wife’s death. God’s megaphone didn’t just rouse Lewis, it nearly shattered him. In writing about his bereavement, Lewis described what it was like to go to God “when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence.” He added: “Not that I am (I think) in much danger of ceasing to believe in God. The real danger is of coming to believe such dreadful things about Him. The conclusion I dread is not ‘So there’s no God after all,’ but ‘So this is what God’s really like. Deceive yourself no longer.’ ”

Years ago I had lunch with a pastor and asked him about his impressions of “A Grief Observed.” His attitude bordered on disdain. He felt that Lewis allowed doubt to creep in when his faith should have sustained him.

My response was the opposite. Perhaps because my own faith journey has at times been characterized by questions and uncertainty, I found the fact that the 20th-century’s greatest Christian apologist would give voice to his doubts reassuring. And Lewis was hardly alone in expressing doubts. Jesus himself, crucified and near death, gave voice to the question many people overwhelmed by pain ask: “My God, my God, why have you forsaken me?”

Jesus’ question, like ours, was not answered in the moment. Even he was forced to confront doubt. But his agonized uncertainty was not evidence of faithlessness; it was a sign of his humanity. Like Job, we have to admit to the limitations of human knowledge when it comes to making sense of suffering. “From the biblical evidence,” the Christian author Philip Yancey has written, “I must conclude that any hard-and-fast answers to the ‘Why?’ questions are, quite simply, out of reach.” So, too, is any assurance that the causes of our suffering, the thorns in our flesh, will be removed. So what, then, does Christianity have to offer in the midst of hardships and heartache?

The answer, I think, is consolation, including the consolation that comes from being part of a Christian community — people who walk alongside us as we journey through grief, offering not pieties but tenderness and grace, encouragement and empathy, and when necessary, practical help. (One can obviously find terrifically supportive friends outside of a Christian community. My point is simply that a healthy Christian community should be characterized by extravagant love, compassion and self-giving.)

For many other Christians, there is immense consolation in believing in what the Apostle Peter describes as an eternal inheritance. “In all this you greatly rejoice,” he writes, “though now for a little while you may have had to suffer grief in all kinds of trials.” It is a core Christian doctrine that what is seen is temporary and what is unseen is eternal, and that what is eternal is more important than what is temporal.

But even so great an assurance as eternal life, at the wrong time and in the wrong hands, can come across as uncaring. It’s not that people of faith, when they are suffering, deny the heavenly hope; it’s that in being reminded of this hope they don’t want their grief minimized or the grieving process overlooked. All things may eventually be made new again, but in this life even wounds that heal leave scars.

There is also, for me at least, consolation in the conviction that we are part of an unfolding drama with a purpose. At any particular moment in time I may not have a clue as to what that precise purpose is, but I believe, as a matter of faith, that the story has an author, that difficult chapters need not be defining chapters and that even the broken areas of our lives can be redeemed.

The book of Isaiah, in prophesying the messiah, describes him as “man of sorrows and acquainted with grief.” We’re told “by his wounds we are healed.” For those of the Christian faith, God is a God of wounds, where the road to redemption passes directly through suffering. There is some solace in knowing that while at times life is not easy for us, it was also hard for the God of the New Testament. And from suffering, compassion can emerge, meaning to suffer with another — that disposition, in turn, often leads to acts of mercy

I have seen enough of life to know that grief will leave its mark. But I have also seen enough of life to know that so, too, will love.

Complete Article HERE!

Things I Wish I Had Known When My Dog Died


[O]n Jan. 4, 11 years and 26 days after I walked out of an animal shelter in New Jersey with a little white and brown dog attached to the end of a brand-new leash, she died. On this day, an undiagnosed tumor pressed down on Emily’s brain and told her that she needed to escape, which made her usually soft, cuddly and often napping body go wild, endangering herself and me. The humane thing to do was put her down.

I don’t think anything could have prepared me for that moment, or the searing grief that followed. But if I could go back in time to console myself, I would tell myself these six things:

Most people will say the wrong thing. They will talk about dogs they knew and loved and put down, too, or, if they haven’t walked through this long, lonely tunnel yet, about how they can’t possibly imagine losing their very alive pet, which reminds you that yours is dead. They will also ask how old she was, and when you say 15, they will say, “Well, it was a good long life,” as if the ending of it would be less painful because of how long you were together.

They may tell you other dog death stories, too, like the one about the dog who was so excited to be home from vacation that he bolted out of the car and was immediately run over while the whole family watched — stories that imply it could have been worse. They will shove shelter listings for other Jack Russell terriers at you, as if another dog could slip into that perfect little spot left by your beloved one-of-a-kind pet.

Guilt overwhelms. I still tell myself that I killed Emily, despite the veterinarian telling me, after her body had been taken away, while I gripped both a counter and a vet tech to keep from collapsing, that all four of her paws had been bloodied as she had clawed at the floor, the door and the ground during her manic and desperate attempt to get away from my home. There is guilt, too, over the relief of no longer having to take care of a dog who was on multiple medications and who had arthritis, two defective heart valves and pulmonary hypertension.

You will become unmoored. I adopted Emily soon after I became a freelance writer, and I wrote three books with her by my side. She was the metronome to my life. With her gone, I floated through a space she no longer occupied but haunted with every little white hair found on my blankets, on the floor, in my shoes. Once, in the first week following her death, I came up from the basement and looked at the spot where she would usually be waiting. I called for her with the foolish notion that she’d appear at the top of the stairs. But of course, no: just another sledgehammer reminder that she was really gone.

Grief is exhausting. Last fall, I ran two marathons and an ultramarathon. After Emily died, I couldn’t drag myself through three miles, not to mention find the energy to get out of bed, put on clothes that were not my pajamas and shower at regular intervals. I pushed off assignments because the idea of putting my fingers to the keyboard was inconceivable when Emily wasn’t sleeping on her bed in the corner of my office. These were wretched, grief-stained days, surrounded by a deafening silence.

I went back into therapy after she died and was told I was depressed, which wasn’t surprising, as I had started to slip into bed at 8:30 p.m. and not get up until half a day later. Losing a companion and your routine all at once, especially if you’re single like me, could throw anyone into a tailspin.

It will get better. You won’t want to hear it, or believe it, because the pain is so suffocating. It does ease, though, almost without you noticing it.

But still, it slaps back. This may happen at predictable moments, such as when you decide to sell her crate, and sometimes not. Soon after Emily died, I got on a plane and went to Florida to bake out the pain with all-day poolside sessions punctuated by midday drinks. It worked, somewhat, but on my last night there, my face cracked open at the World of Disney store when I saw a mug with the character Stitch that said “brave” on one side and “loyal” on the other. Only the cashier noticed that I paid with tears and snot running down my face. I then ran out of the store to stare at a lake.

These days, I get up, I brush my teeth, I write, I run. I smile now and laugh sometimes. The pain still catches me, though, and I can now more clearly see why: I loved that dog, and in giving a scared, abused, imperfect Emily a home, she loved me back, and together our lives both bloomed. The loss of that joy is why the pain is so acute — and why, at some point in the maybe not so distant future, I’ll go back to that animal shelter with a brand-new leash, and do it all over again.

Complete Article HERE!

Many end-of-life talks end in confusion, study shows

By Dennis Thompson

You’ve filled out a living will, and designated a surrogate to make medical decisions if you’re incapacitated.

But, your end-of-life planning may not be done yet.

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.

Complete Article HERE!

It’s not death that he’s afraid of but dying

Noel Conway, who has motor neurone disease, and his wife Carol want to change the law on assisted dying


[T]he daffodils are in full bloom outside the cozy Shropshire cottage where Noel Conway prepares for his day in court, spring sunshine streaming through the window.

Typing has become too difficult for the 67-year-old. He can just about manage with a specially-adapted mouse, but has invested in the eye-gaze technology made famous by Stephen Hawking. He is finding it hard going. “I’m so slow. I don’t know how he ever wrote a book using it. But I am preparing for what I know lies ahead,” he says.

This highly articulate, retired adult education lecturer knows it is only a matter of time before he loses his powers of speech. Like Professor Hawking, Mr Conway has motor neurone disease. Unlike the physicist, he won’t live with the illness for years to come. This will probably be his last spring.

It is not death that alarms him but the process of dying. The suffering in the last months and weeks of life for those with MND is notorious. Bit by bit, neurons stop communicating with one another, resulting in difficulty moving, speaking, swallowing and eventually breathing. Mr Conway wants to have the right to say when enough is enough and die in some degree of comfort.

He cannot take his own life — he has not got the strength, and under the current law no one can help him die without risking prosecution and imprisonment. Which is why tomorrow Mr Conway and his wife Carol will take a judicial review to the High Court. Despite his poor health, he will be there in person.

Diagnosed in November 2014, his illness has progressed rapidly, particularly in the past few months. Having lost the power and feeling in his arms in the first stages of the illness, in November the former mountaineer, skier and cyclist caught an ordinary winter bug. “That finished off what strength I had left in my legs,” he said. He now relies on a hoist and uses a power wheelchair.

He can no longer clean his teeth or scratch his head. He gets stuck on his back in bed at night and has to call out for his wife to help him. He wears a ventilator much of the time.

On the plus side, he is still able to talk and does so with intelligence and passion. And he can still eat and drink with help, and the use of a one-way valve straw. “I draw the line at wine, though. I’m not drinking that out of a tumbler and straw.” He refused to have a tube fitted into his stomach for feeding. “The day I cannot eat and drink . . . well I don’t want to be here anymore.”

Noel Conway in 2008. He thinks it is wrong that the wealthy can afford to use Dignitas while others must continue to suffer

However, it is the thought of not being able to move, an inevitability, being trapped in a totally paralysed body, that he finds most harrowing. “I know that when I’m absolutely rigid and immobile, can’t speak or breathe, I want to be able to say right, it’s time to go,” he says. “I do not want to be trapped in a tiny cell inside a pyramid with the sides closing in on me.”

That fear prompted Mr Conway to join Dignitas, the Swiss clinic which offers medically-assisted dying to the ill and disabled. More than 40 Britons end their lives there each year and no one has ever been prosecuted for helping a loved one make the journey there. It is, in effect, a legal form of assisted suicide for the wealthy.

“It was a relief to join. I felt I needed to take control,” he said.

However, he feels there is something fundamentally wrong if the wealthy have an option that no one else has. His entire life he has tried to fight for those who have had no voice. He was a councillor in Blackburn in his early 20s and during his career championed the cause of those who missed out on education first time round to have another chance.

“Only a small number of people can afford Dignitas,” he says. “The fees are about £7,500 and you have to get there on top of that. So it is prohibitively expensive for many. It is inequitable.” It is this passion for fairness that has led him to take his case to court.

Supported by the campaign group Dignity in Dying and having raised £30,000 through crowdfunding, his legal team will ask the court to declare that the blanket ban on assisted dying under the Suicide Act 1961 is contrary to his human rights. They will argue that as a terminally ill, mentally competent adult, his right to a private life includes the right to make decisions on the end of his life.

He has a good case.

The most recent assisted-dying case was taken by Tony Nicklinson, who suffered locked-in syndrome. Although the Supreme Court finally rejected his case, judges were sympathetic and urged MPs to consider changing the law. Mr Conway will argue that they have not done this in any serious way despite polls suggesting overwhelming public support for change. MPs held a brief Friday afternoon debate on a private members’ bill on the issue in September 2015, then voted it down.

“I must say, I am appalled at the way a considerable number of MPs did not even engage with the issue, which is a very serious one for our time,” Mr Conway says.

Complete Article HERE!

I’m glad my friend was able to make his own end-of-life decision

Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.

[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.

My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.

Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.

The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.

I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.

I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.

At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.

All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.

The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.

This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.

If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.

My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.

Complete Article HERE!

Where you live may determine how you die, study suggests

By JoNel Aleccia

[A]mericans 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 US, 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 and 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 US, 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 US. 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 US.

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 US, 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 coauthor, 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 US, 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.

Complete Article HERE!