‘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.
[R]amses II, also known as Ramses the Great, was born about 3,000 years ago and is widely regarded as the most powerful pharaoh of the Egyptian Empire. The Greeks called him Ozymandias. When he died in 1213 B.C.E., he left a series of temples and palaces that stretched from Syria to Lybia, and countless statues and monuments commemorating his impressive reign. By the 19th century, when European colonization reached Egypt, most of these statues were gone, and the ones that remained were in ruin. In 1816, the Italian archaeologist Giovanni Belzoni discovered a bust of Ramses and acquired it for the British Museum. This is when Ozymandias’s life, in one respect, truly began.
“Ozymandias,” perhaps the most famous sonnet Percy Byshe Shelley ever penned, was written in 1817, as the remains of the famous statue were slowly transported from the Middle East to England. Shelley imagines a traveler recounting a journey in a distant desert. Like Belzoni, Shelley’s character discovers a great bust, half-buried in the windswept sands. Next to the wreckage is a pedestal where the monument once stood. Inscribed in shallow letters on the slab of rock: “My name is Ozymandias, king of kings: Look on my works, ye Mighty, and despair!” Of course, as Shelley’s poem tells us, nothing remained of these works or the king of kings. Just sand.
The poem’s message is perennial: All of this will be over soon, faster than you think. Fame has a shadow — inevitable decline. The year 2016 has delivered a string of deaths that serve as bracing reminders of this inevitability: Prince, Nancy Reagan, David Bowie, Elie Wiesel, Bill Cunningham, Muhammad Ali, Gordie Howe, Merle Haggard, Patty Duke, John Glenn. Of course, it has also been a year that has ushered in a new empire and, simultaneously, the specter of apocalypse. The year’s end is a time to take account of kingdoms built, but also the sheer rapidity of their destruction. It is a chance to come to terms with the existential fragility that is overlooked in most of our waking hours and that must be faced even by the greatest among us.
We tend to defer the question of living or dying well until it’s too late to answer. This might be the scariest thing about death: coming to die only to discover, in Thoreau’s words, that we haven’t lived.
Facing death, though, is rarely simple. We avoid it because we can. It’s easier to think of “dying” as an adjective than a verb, as in a dying patient or one’s dying words. This allows us to pretend that dying is something that is going to happen in some distant future, at some other point in time, to some other person. But not to us. At least not right now. Not today, not tomorrow, not next week, not even next decade. A lifetime from now.
Dying, of course, corresponds exactly with what we prefer to call living. This is what Samuel Beckett meant when he observed that we “give birth astride the grave.” It is an existential realization that may seem to be the province of the very sick or very old. The elderly get to watch the young and oblivious squander their days, time that they now recognize as incredibly precious.
When dying finally delivers us to our unexpected, inevitable end, we would like to think that we’ve endured this arduous trial for a reason. Dying for something has a heroic ring to it. But really it’s the easiest thing in the world and has little to do with fame and fortune. When you wake up and eat your toast, you are dying for something. When you drive to work, you’re dying for something. When you exchange meaningless pleasantries with your colleagues, you’re dying for something. As surely as time passes, we human beings are dying for something. The trick to dying for something is picking the right something, day after week after precious year. And this is incredibly hard and decidedly not inevitable.
If we understand it correctly, the difficulty is this — that from the time we’re conscious adults, maybe even before that, we get to choose how we’re going to die. It is not that we get to choose whether we contract cancer or get hit by a bus (although certain choices make these eventualities more or less likely) but that, if we are relatively fortunate (meaning, if we do not have our freedom revoked by circumstance or a malevolent force we can’t control), we have a remarkable degree of choice about what to do, think and become in the meantime, about how we go about living, which means we have a remarkable degree of choice over how we go about our dying. The choice, like the end itself, is ultimately ours and ours alone. This is what Heidegger meant when he wrote that death is our “own-most possibility”: Like our freedom, death is ours and ours alone.
Thinking about all of our heroes and friends and loved ones who have died, we may try to genuinely understand that death is coming, and to be afraid. “A free man thinks of death least of all things,” Spinoza famously wrote, “and his wisdom is a meditation not of death but of life.” But we don’t even begin to think about life, not really, until we confront the fact that we are doing everything we can not to think about death. And perhaps we’re not so much afraid of dying, in the end, as of not living and dying well.
Everyday life has no shortage of things with which to waste our time: the pursuit of money, intelligence, beauty, power, fame. We all feel their draw. But the uncomfortable, claustrophobic truth is that dying for something like money or power tends not to be a choice at all. David Foster Wallace argued that for most of us dying in the pursuit of wealth or prestige is simply our “default setting.” The problem isn’t that we’re picking the wrong things to die for, but that we aren’t actually picking. We chose to live by proxy. We allow ourselves to remain in a psychological trap that prevents us from seeing what might be genuinely meaningful in our own lives. In doing so, we risk, according to Wallace, “going through (our) comfortable, prosperous, respectable adult life dead, unconscious, a slave to our heads and to (our) natural default setting of being uniquely, completely, imperially alone day in and day out.” We might call this the Ozymandias Trap — Look on my works, ye Mighty, and despair! — and be on guard against falling into it ourselves.
Most days we discover that we’re not quite up to the heroic task of extricating ourselves from the Ozymandias Trap. Others, we fear we’ve failed miserably. It is not realistic to love in the awareness that each day might be your last. But at least we can stop pretending that we will endure forever.
In Tolstoy’s famous story “The Death of Ivan Ilyich”, the dying hero reluctantly accepts his own mortality, albeit only once he can no longer avoid the truth:
It’s not a question of appendix or kidney, but of life and … death. Yes, life was there and now it is going, going and I cannot stop it. Yes. Why deceive myself? Isn’t it obvious to everyone but me that I’m dying … it may happen this moment. There was light and now there is darkness … When I am not, what will there be? There will be nothing …
Ivan Ilyich can’t pretend that he’s not dying. He recognizes what Ramses II apparently did not: With his death, there is no justification of his life, there is no proof of himself to leave behind, there are no monuments where he is going. He has lied to himself all of his life about the fact that he’s going to die.
In the end, Ivan is liberated from his self-deception. And we, too, can free ourselves from this delusion. As soon as today. Right now.
If we succeed, we may find that confronting the fact of our own impermanence can do something unexpected and remarkable — transform the very nature of how we live.
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.”
Retired Army Col. George Morris, 94, is receiving end-of-life care at Fort Belvoir Community Hospital (Virginia), where his wife, Eloise, 91, is a “compassionate admission,” lying beside him.
By Tara Bahrampour
[F]or 73 years – through wars in Europe and Asia and civil rights battles at home, through the assassination of a president and the rise of rock-and-roll – they shared a bed.
He’d be gone sometimes, flying missions during World War II and the Korean and Vietnam wars, but he always came back to her.
So now, as he lies in a hospital bed unable to say or do much, she lies beside him.
Like many hospitals, Fort Belvoir Community Hospital, where retired Army Col. George Morris, 94, is receiving end-of-life care, allows family members to sleep in a patient’s room on a fold-out couch. But for George’s wife, Eloise, 91, a cancer survivor who has suffered two broken hips and a broken shoulder, that would be hard.
So the hospital made a special exception when they admitted him this month: They admitted her as a patient, too – a “compassionate admission,” their doctor calls it. Standard rooms are normally private, but Eloise’s hospital bed was rolled in and pushed up against George’s – a final marriage berth for a husband and wife who met as teenagers in rural Kentucky in the late 1930s.
He spotted her first.
“I was a sophomore in high school, and I’d gone to see a play in a country school,” said Eloise, sitting up in her reclining bed, a birdlike woman in oversize bifocals whose hair is hardly touched by gray. George rested in his bed beside her. “He saw me and went home and told his mother, ‘I just met the girl I’m going to marry.’ He said, ‘I looked her over real well and I couldn’t find anything wrong with her but one crooked tooth.’ ”
A movie date and a picnic followed. Eloise can’t recall the movie – she was too distracted by the thrill of holding his hand in the dark.
The picnic, however, was unforgettable.
“Here comes George and he had something in his hand with a crank on the end and I wondered what this was.” It was something she’d never seen before – a portable phonograph, and when he turned the crank it started playing “Sweet Eloise,” a popular song at the time. He turned that crank all afternoon. “Oh, I thought that was great.”
The town of Russell Springs, Ky., where she lived on a farm, was eight miles from Columbia, where he lived. He didn’t have a car, so he’d walk the distance to see her. By 15 she was wearing an engagement ring and had no doubts about what she was doing.
“He had thick eyebrows and devilish eyes, and I hadn’t seen any guys my way that good-looking,” she said. “I thought that he was more intelligent than any man I’d ever met.”
They married and had two sons and a German shepherd who played outfield in family softball games. After stints in Tokyo and Alaska, they eventually settled in Annandale, Virginia.
Eloise Morris, married 73 years, wears a ring she chose after she lost her original wedding ring. (It was found many years later.)
Those legendary eyebrows are wispy now, the devilish eyes half-closed as he lies beside a tray of juice and apple sauce. But every now and then as she spoke he chimed in, his voice rising alongside hers like an echo.
“We had some lean times but some great times,” she said. “We didn’t have a lot of material things, but we could sure have a sweet time. There was lots of love around. George could always make me feel so protected.”
It was a stark contrast from her youth – her father left her mother before she was born, and she grew up an only child, helping her mother and grandparents tend to the sheep and cows and chickens.
As partners, the two complemented each other. “He was strong-willed. I don’t mean bossy-bossy. But his father would say, ‘Eloise knows how to make George think he’s boss.’ Some people might call that tricky, but I know how to keep people happy. I know how to keep George thinking that he’s making the decisions.”
Being married to an airman had its challenges. He took her up once in a P-51 Mustang fighter plane and it nearly killed her. “I couldn’t hear and I was very sick to my stomach. When he did the roll, that was fine, but when he did the loop, well, I kind of blacked out and my mouth opened and I just couldn’t stand it.”
George had a lot of friends who didn’t come back from the wars. During Vietnam, “he said one of the saddest things was when he brought the dead soldiers home – he said that was heartbreaking because they were so young.” He retired in the 1970s.
The secret to seven decades of love? “Be happy, whether you’re happy or not. Laugh.” Like they did the time they were posted somewhere new and they arrived before their belongings – including their sheets and pillows.
“We cut up the newspaper and put our heads on one duffle bag, and every time we moved, the paper in it would rattle and we laughed all night,” she said, grinning. “We really, really loved each other. We were lonely, lonely when we were apart, and when he’d come home, it was just heaven.”
Their sons have since died – the older one three or four years ago, the younger one several months ago – and most of their grandchildren, great-grandchildren, and a great-great-grandson live in other towns. Although they visit sometimes, it is mostly just the two of them.
Admitting Eloise so she could be with George was not a hard decision, said the couple’s doctor, U.S. Army Maj. Seth Dukes. “We take care of the people who’ve taken care of our country,” he said. “And we extend that to their loved ones.”
At this point, Dukes said, George is dealing with a combination of medical issues, and the goal is to keep him comfortable.
For Eloise, it’s hard to see him unable to talk or eat much. “The expression on his face has changed; his eyes just look fixed,” she said. “It’s heartbreaking to see somebody lose everything, especially the days that he doesn’t know me.”
But her presence seems to comfort him. “He talks in his sleep, and when he starts I just put my hand on his and he stops.” And during the day, she talks to him. “Even though I don’t know if he can hear me, I always thank him for looking after me so well.”
An aide peeked in. Eloise seemed tired. So she did what comes most naturally: She lay down beside her husband and reached for him, their hands now mottled and roped with veins, but their fingers still knowing how to intertwine.
Yong Nie had no papers, no contact with family – and one last wish.
By Kate Legge
[F]or 20 years Yong Nie dodged Australian authorities by lying low, staying out of trouble, earning cash in hand through odd jobs, sleeping rough and keeping to himself. But when he developed an aggressive cancer, the game was up. Gaunt, jaundiced, his once dark hair streaked grey, the 68-year-old illegal immigrant turned up at the emergency department of Sydney’s St Vincent’s Hospital doubled in pain and fearing deportation. But instead of being thrown out, locked up and shipped off, he was welcomed by palliative care staff who took him in as one of our own.
The good death at the heart of this story confirms the generosity of ordinary people performing exceptional acts of compassion without triumphalism or reward because this is what they do every day. Few of those who crossed Nie’s path during the two months he spent at the inner-city hospital founded by the Sisters of Charity will forget him. They couldn’t cure his disease-ridden body but they worked tirelessly to heal a terrible burden in his soul. Those drawn to fulfil his dying wish came from different faiths and countries. There were doctors, nurses and social workers employed in this Catholic health service; monks and volunteers from the Nan Tien Buddhist temple near Wollongong; a Chinese community cancer support agency and Australian Embassy officials in Beijing. Racing against death’s advance, they embraced this fringe dweller who had fallen foul of officialdom with gracious gestures that celebrate the humanity of frontline carers while reminding us how lucky we are to live in a country where goodness thrives.
Yong Nie had not spoken to his wife or daughter since leaving the sprawling Chinese port city of Tianjin two decades ago bound for Australia, possibly on a business visa. It was a mission that went awry, humiliation eventually driving him to a flimsy existence with no fixed address, floating on the margins of a society he failed to join. The longer he hid from his family in silence, the harder it was to bridge the distance. He had no Medicare card, no identifying papers, no tax file number, no information about next of kin, and savings of $72.46 when he was admitted to palliative care in May. “There was nowhere else for him to go,” says Professor Richard Chye, director of the Sacred Heart palliative care unit at St Vincent’s. “We could not put him on the street. His cancer had spread to his liver; it was too late for treatment.”
Amid grim accounting of refugees around the world as well as those in offshore detention centres closer to our shores, here is an oasis where generosity of spirit is blind to colour, creed and citizenship. It doesn’t matter where you’ve come from, since everyone in these wards is contemplating death and energies are focused on journeying comfortably and peacefully to this end. “From a healthcare perspective we were not obliged to report him as an illegal immigrant,” Chye insists. “We provide spiritual care and support and if we reported him to the authorities he would have a lot more emotional angst and worry.”
With only a smattering of English, the patient spent the first week alone, sick and scared as social workers and nurses tried to gently tease out details that would help them look after him. “His biggest fear was that he would be kicked out of hospital,” says Michelle Feng, a Chinese-born nurse who speaks Mandarin. “But I reassured him that was not going to happen.” As luck would have it, her husband emigrated 16 years ago from Nie’s home city, southeast of Beijing. Concerned mainly with alleviating his physical duress, she did not pry. “He told me he’d lost contact with his family, that he had not spoken to them since he came to this country. I was curious,” Feng concedes.
“How can you have a father or husband and no contact? Maybe he was afraid to contact them,” she wonders before dismissing these niggling thoughts. “For me, a patient is a person. They all have their own needs and we have to adapt to them. He is a person who has been living underground but I didn’t ask the reason. I don’t know why. At the end of life everyone deserves to be treated as a human being. Really, we don’t have a lot of time.”
Prof Richard Chye with St Vincent’s Hospital palliative care unit staff; at right, Michelle Feng (white shirt) and Trish McKinnon (in black).
Social worker Trish McKinnon arranged for Mandarin-speaking volunteers from the Chinese community support group CanRevive to visit “Mr Nie” so they might better understand his circumstances and needs. Although he had inhabited a shadowland of sorts, he counted a few as friends. He’d helped a single mother in the Chinese community and for many years he’d served as a volunteer at the Nan Tien Buddhist temple, an hour from Sydney. There he got to know Stanley Wong, who came here from China 24 years ago. They cooked together for temple functions. Wong speaks limited English but tells me “we help each other”. Informed of Nie’s rapid decline, he arranged a roster of hospital visits with another Buddhist so that there would be bedside company for him almost every day.
Dr Kate Roberts, a passionate young member of staff, recalls witnessing the turnaround in the patient’s demeanour as the threads of connection were drawn together. “In the first week he had zero visitors. He was severely jaundiced, hardly speaking, and a little suicidal. He used to say, ‘Send me back to China or send me to a train station and I’ll sit there until I die’. But then people from the Nan Tien temple began to trickle in and he began to smile. He did a 180-degree switch.”
Michelle Feng says the presence of the Buddhists calmed him. “He’d been so worried and anxious and not able to sleep. But from the first time the Buddhists came to pray around his bed he told me, ‘The worry is gone’. ” He began to eat, requesting white rice congee — a simple dish of boiled rice with no seasonings — for every meal. Feng brought him pickles from home to flavour his food. Stanley Wong arrived with nourishing broth. Gradually Nie gained the confidence and courage to express his urgent desire to reconcile with the family he’d left behind.
Before coming to hospital he had approached the Red Cross for help in contacting his wife and daughter but the search had drawn a blank. Wong says Nie was “too scared” to approach any other agency. But the longing to make amends troubled him deeply. “He realised he was coming to the end of his life and his final wish was to contact his family,” says McKinnon. “He was too ill to travel and he had no passport so everyone went out of their way to achieve the goal of a man who was going to die. A reaffirmation of family began and there was this wonderful confluence of palliative care principles and Buddhist acceptance.”
The notion of “existential resolution” is central to the Sacred Heart unit’s philosophy of minimising pain and discomfort in the dance towards death while resolving emotional agitation and distress. “We try to ensure patients are physically and emotionally calm and prepared, ensuring peace at the end of life, so we try to assess appropriate information without being intrusive,” says McKinnon.
Once members of the palliative care team became aware of how much a reconciliation with his family meant to Nie, they enlisted the support of Wong, who had a friend who knew somebody in Tianjin, a vast metropolis with a municipal population of more than 15 million. Feng told Nie the city had grown and developed like topsy since his departure but hopes were pinned on the location of his elder brother, a secondary school physics teacher. Wong’s messenger found him within four hours of posting an alert on a missing person’s site.
This breakthrough led to an exchange of phone numbers for Nie’s wife and daughter, as well as news of a granddaughter, now four years old, and the revelation that Nie’s sister, who is based in Hong Kong, was visiting her son in Melbourne. She tells me through her English-speaking granddaughter that she had no idea of her brother’s whereabouts for the past 20 years: “He disappeared.” Those intent on facilitating a reunion stayed clear of the details that had conspired to keep members of this family apart. Feng set up the Chinese version of Skype so Nie could communicate with his wife and daughter. “It was quite amazing,” she recalls. “His wife and daughter were in tears. Everybody was crying. I didn’t want to intrude.”
A plan took shape for getting them to Australia. Wong shared the view of Sacred Heart staff that reconciliation would not only console the patient but also salve the heartache and bitterness of relatives bewildered by his unexplained absence for two decades. “He left his family. No contact. No money,” Wong says, still perplexed, even though he knows a little of the gambling problems that beset his friend. “He lost money. He couldn’t face them.” Now was not the time for recriminations. “They were very upset, very angry. It was very difficult. I told his daughter, ‘You should come and see your father otherwise you will never see him again’. ”
Wong collected money to help with the reunion. He pleaded with Nie’s wife and daughter to make the trip, convinced they would feel lighter for this rare chance to say goodbye. “I told them this was a time for forgiveness. Now was the time to put everything away, all the unhappy stories to one side so they could feel peace.” As Nie’s health deteriorated, hospital staff wrote to the Immigration Department to hasten visitors’ visas issued by embassy staff in Beijing. “It was absolutely amazing,” McKinnon says of the frantic efforts to expedite their journey before Nie took his last breath. Wife and daughter arrived at the hospital and were accommodated in a room near his. “We were so anxious about it. From my point of view this was unfinished business and I was sure that a reaffirmation of the family connection would help enormously … I walked them along the corridor to the room, explaining his physical state to prepare them. It was quite ethereal. When they walked in, he introduced them to us. He said, ‘This is my wife. This is my daughter.’ It was an absolute statement of connection,” she recalls.
“There were tears. They were quite overwhelmed by the face-to-face intimacy but they were pleased this had happened. There was not a lot of discussion about the intervening years. This was not the time to trawl through the past. Obviously there was grief from the missing years but there was no castigation at all, just a real sense of solidarity at the end of life.” Nie’s wife brought with her a yellow cloth inscribed with Chinese characters and laid it under his head. Wong explains this Buddhist tradition encourages serenity in death. “This releases the body and brings peace and silence before people pass away.”
Nie died the next morning. A senior monk from the Nan Tien temple was called in to lead prayers and chanting in the room where he lay. “It was very beautiful,” Wong says of his friend’s final hours. “I think we should all become Buddhists,” laughs McKinnon. “It was a wonderful outcome in every way.” Nie’s daughter accompanied the body to the temple for cremation and before their return to China they visited Nie’s sister in Melbourne. Another link mended in this long broken chain.
Among doctors, there seems to be broad consensus about the relevance of double effect in end-of-life care.
Debate over euthanasia in Australia has been renewed by the recently failed bill to legalise it in South Australia, and the Victorian government’s announcement it will hold a conscience vote on assisted dying next year. As usual, parliamentary debates have spilt over into expert probing of current practices in end-of-life care.
From doctor and writer Karen Hitchcock to the Australian Medical Association, there seems to be broad consensus about the relevance of a doctrine called “double effect” in end-of-life care.
Double effect, in the most general sense of the term, is the view that a doctor acts ethically when she acts with the intention of bringing about a good effect, even if certain undesirable consequences may also result.
While doctors agree double effect is a useful principle, there is disagreement about how it applies in end-of-life situations.
On one account, the doctrine can be applied to both palliative sedation and euthanasia. The former is the alleviation of symptoms in terminally ill patients using sedative drugs. The latter is the active killing of a patient by administering sedative barbiturates, such as Nembutal.
Some doctors suggest that, under the double effect doctrine, palliative sedation can be applied more liberally. The relief of pain can actually result in the death of a patient, which means palliative sedation can cover many of the cases of individuals seeking euthanasia.
The argument then is, because palliative sedation does the same work as the euthanasia law is intended to cover, we needn’t create a law to legalise euthanasia; we need only clarify existing law on double effect and palliative sedation. I’ll call this the “minimalist thesis”.
But there is a strong argument to suggest the minimalist thesis is untenable. Euthanasia and palliative sedation are categorically distinct. This is because the intent – which is the operative word when it comes to moral philosophy and to legal principles – of doctors in each of the interventions is different.
In palliative sedation, doctors administer pain relief with the primary intent of relieving pain. In the case of active euthanasia, doctors administer barbiturates with the primary intent of ending the patient’s life.
What is double effect?
The so-called doctrine, or principle, of double effect is a philosophical concept often employed when evaluating the morality of actions. It rests on the basic conviction that in morality intentions matter, and that a person’s intentions are what make their actions moral or immoral.
There are various formulations of the doctrine, depending on which ethical, religious or legal tradition you are approaching it from. We can nevertheless posit a generic definition along the following lines:
The doctrine of double effect states, where certain criteria are met, a person acts ethically when acting to bring about a good or morally neutral outcome – even though her action may also have certain foreseen, though not intended, undesirable consequences.
In the end-of-life context, for example, the ethical act to bring about a morally neutral outcome would be administering pain medication. The potentially unintended consequence would be death.
An important phrase in the above definition is “where certain criteria are met”. Depending on the tradition you work in, these criteria will vary. There is, nevertheless, broad consensus about the following criteria:
We cannot intend the bad effect
The “bad” of the unintended consequences cannot outweigh, or be greater than, the intended “good” outcome
The good effect must not be produced by means of the bad effect.
The bad of the unintended consequences cannot outweigh, or be greater than, the intended good outcome.
It is generally said doctors should have, as their primary intent, the relief of suffering and not some goal that, while perhaps acceptable, is not within the purview of the role of doctor – such as ending a person’s life.
Doctors draw on double effect in serious cases where a treatment has certain foreseen, undesirable consequences. This may be minor or major injury to the patient, or even perhaps the hastening of death.
Palliative sedation v euthanasia
Doctors typically administer palliative sedation only in the last days or hours of a patient’s life. This involves using sedative drugs to relieve acute symptoms of terminally ill patients where other means of care have proven ineffectual. These symptoms are known as refractory symptoms, and include vomiting, delirium, pain and so forth.
The sedative drugs that doctors administer – the most common of which are benzodiazepines such as Valium – render the patient unconscious or semi-conscious. Often these are administered in gradually increasing doses, depending on how long and to what extent doctors want to sedate the patient.
Sometimes the drugs administered may hasten death. Crucially, though, the primary intent of doctors is to relieve unbearable or otherwise untreatable suffering.
In the case of euthanasia, however, to state it tersely, a doctor or other health-care professional seeks to kill the patient. Medical euthanasia is administered in response to suffering, be it of a patient who is terminally ill, afflicted by intense and prolonged physiological suffering, or by psychological or existential suffering.
Muddying the waters
Monash bioethicist Paul Komesaroffand others have suggested that, instead of legalising euthanasia in Australia, we should clarify the law on double effect and palliative sedation.
The minimalist approach has the added benefit we needn’t get involved in placing arbitrary restrictions on end-of-life care – as legislators are wont to do with euthanasia law.
Yet this argument equivocates on the nature of palliative sedation. In cases where patients still have six months to live, or where their suffering is broader than ordinary refractory symptoms, it is not permissible to provide palliative sedation – at least, not according to existing ethical guidelines.
If this were to be done, the primary intention would not be to relieve suffering but rather to hasten or actively bring about the patient’s death. Even if one wished to suggest our ultimate intent were to relieve suffering, we would nevertheless be using the bad consequence as a means to that end. This violates one of the generally agreed upon criteria employed when invoking the doctrine of double effect.
We stand to lose rather than gain from muddying the waters around double effect and palliative sedation. The real question legislators need to consider is this: should the state sanction the active killing of terminally ill patients by their doctors? We do ourselves a disservice to pretend euthanasia is anything other than this.
[W]hen I talk to people with Medicare about planning for the end of their lives, the statistic that always strikes me is this:
If you ask people if they’d rather die in a hospital or at home, 75 percent say at home. But when you look at what actually happens, only 25 percent of people get to die at home, while 75 percent pass away in hospitals.
The only way you can ensure that your doctor understands your wishes is by talking about them. And now, Medicare will reimburse your doctor for that conversation.
This is called advance-care planning. It’s designed to help people with Medicare learn about various options for end-of-life care; determine which types of care best fit their personal wishes; and share their wishes with their family, friends, and physicians.
One option you can discuss with your doctor is hospice care in their home. Hospice doesn’t focus on curing disease and it’s not only for people with cancer.
Medicare’s hospice benefit covers your care, and you shouldn’t have to go outside of hospice to get care except in rare situations. Once you choose it, your hospice benefit should cover everything you need.
If you qualify for hospice care, you and your family will work with your hospice provider to set up a plan of care that meets your needs.
You and your family members are the most important part of your medical team. Your team can also include doctors, nurses or nurse practitioners, social workers, physical and occupational therapists, speech-language pathologists, hospice aides, homemakers, and volunteers.
A hospice nurse and doctor are on-call 24 hours a day, 7 days a week to give you and your family support and care when you need it. You can also include your regular doctor or a nurse practitioner on your medical team to supervise your care.
To find a hospice provider, talk to your doctor or call your state hospice organization. The National Hospice and Palliative Care Organization has a website that allows you to look up local providers based on your zip code, at nhpco.org/find-hospice.
You can get hospice care if you have Medicare Part A (hospital insurance) and you meet these conditions:
Your hospice doctor and your regular doctor (if you have one) certify that you’re terminally ill, with a life expectancy of 6 months or less;
You accept palliative care (for comfort) instead of care to cure your illness;
You sign a statement choosing hospice care instead of other Medicare-covered treatments for your terminal illness and related conditions.
You have the right to stop hospice at any time. If you do so, you’ll go back to the type of Medicare coverage you had before you chose a hospice provider.
Depending on your illness and related conditions, the plan of care your hospice team creates can include doctor and nursing services, medical equipment and supplies, prescription drugs, hospice aide and homemaker services, physical and occupational therapy, speech-language pathology services, social worker services, dietary counseling, grief and loss counseling for you and your family, short-term inpatient care for pain and symptom management, and more.
