There are two things that movies consistently get wrong: sex and death. Unfortunately, as a society, we spend far too much thinking of sex, and too little time devoted to death – especially of a parent.
Caring for a dying parent is a difficult and emotionally challenging task. However, effective communication can ease the transition.
Movies consistently present death in a false or unrealistic way. Real-life death is not always dignified, simple or tidy. Indeed, death can be upsetting, messy, painful and traumatic experience for all parties involved.
Complications can arise during the course of an illness can lead to increasingly worsening circumstances. Immobile or semi-mobile patients may feel determined to walk and my try to get out of bed. As a result, some may fracture or break their hip. As bad as terminal illness is, additional complications can make quality of life worse. Patients may become restricted to their bed and may rely on a catheter.
Regardless of the attempts to prevent it, as soon as they return home, complications such as a yeast infection or urinary tract infection may occur. This causes a patient to become even more frightened and restless. How is anyone supposed to take care of a dying person? It’s a fairly straightforward to concept “nurse” a person back into good health, but how is anyone supposed to “nurse” them into death with dignity and compassion?
Then there’s the morphine. Dying parents may often feel agitated and restless, so much so that they might try getting out of her bed. The morphine may help to calm them down. Is it unethical to give it to them to address mental rather than physical pain? Although her hip fracture causes pain. Many children give their parents morphine more for their parents restlessness.
The only organ donors you see on “Grey’s Anatomy” are car accident fatalities. No one ever talks about mulling over whether or not to give someone’s organs away while they’re still conscious in another room.
These are the kinds of issues that children with dying parents struggle with every day. Many adult-children caregivers believe that their ill parent wouldn’t have wanted to live this kind of existence. They may have stated that they didn’t want a lingering, drawn-out death. This is why advance directives are so essential.
If you’re like most families (including mine), generally, the care of a dying parent falls on the shoulders (and back) of one sibling or family member. Although it’s rare for siblings to share parent care equally, it’s a family responsibility. Not treating it as such “will haunt you” later on. Even if you live far away from your ailing parent, you can still help out.
From ordering car service a couple times a week to paying bills online, anything that can be done via telephone or internet is within your reach, she notes. Just calling your mom more often “so she’s not so needy” can provide relief to the sibling carrying the heaviest load, says Russo, as can making the trip to be with your mom whenever possible, so your sibling can take time off.
End-of-life care is something that few people like to think about, let alone discuss. Avoiding the subject until it’s unavoidable, however, can be a “huge mistake” with devastating consequences for the sibling relationship. Call a family meeting when your parents are still healthy.
Such a conversation might start this way: Remember aunt so-and-so, and how our cousins were still fighting when she was on the respirator and they wouldn’t let her die and how painful that was for everybody?
We don’t want that to happen in our family.
Mom, Dad, do you have a living will? Have you assigned somebody to be the healthcare proxy? Though they may attempt to deflect such questions: nudge further. If you were on a respirator or in really bad shape, would you want us to do everything possible, or would you just want to go quietly? Who should make that decision? We’ll all want to do what’s right, but we may have different feelings.
It’s time to start an honest and open discussion of what dying really means. How can we help someone we love to pass on? What do “extraordinary measures” mean to different people? To some, it may mean CPR. For others, it might mean giving any medications that can help. Furthermore, what constitutes a tolerable living standard? For instance, what happens when someone is bedridden or unable to control their bowels?
There are few things more difficult than saying goodbye to a dying parent. These questions are undoubtedly tough ones. In most cases, they’re mentioned far too late.
Hospice care is for the dying. It helps patients manage pain so they can focus on spending their remaining time with loved ones. But in recent years, nearly one in five patients have been discharged from hospice before they die, according to government reports.
A study published last month in the journal Health Affairs finds that hospices with the highest rate of so-called “live discharges” also have the highest profits. The lead author is Rachel Dolin, a David A. Winston fellow researching health policy. Her paper found an association between high live discharge rates and high profit margins, but it didn’t determine the cause.
“It’s important to continue to study this area to get a better sense as to whether profits are driving the decision to discharge patients from hospice, rather than patient preferences and needs,” says Dolin.
To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.
“It was decided that I was not dying fast enough,” he told Arizona Public Media in 2015. “And so, to put it most succinctly, I flunked the hospice program.”
Nelson died a few months after giving that interview, but his situation isn’t all that unusual.
Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.
It’s important to understand, though, that when patients are discharged from hospice, they don’t necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.
Medicare pays the bills for the vast majority of patients receiving hospice care, at a cost to the government of at least $15 billion a year. Federal regulators have questioned whether high rates of live discharge mean that hospices are making money by admitting patients who aren’t actually dying.
But these decisions aren’t that clear cut, says Dr. Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. “We see more and more patients that have conditions like Alzheimer’s disease or Parkinson’s disease that don’t always follow a predictable course,” says Rotella.
Some who study aging are concerned that certain hospices are gaming the system. That’s a worry of Susan Enguidanos, an associate professor in the Leonard Davis School of Gerontology at the University of Southern California. For example, she says that some hospices may be trying to avoid paying for costly treatments by discharging patients temporarily when they need to go to the hospital.
“Individuals that are going in for these very brief health issues are coming out and then, they’re being readmitted to those [same] hospices,” says Enguidanos.
That’s not a good reason to discharge someone, says John Keyserling, senior vice president for communications and policy at the National Hospice and Palliative Care Organization, the trade association for hospice providers.
“Any association between profit margins and clinical decision making is inappropriate and not something that the hospice community supports,” Keyserling says.
That hospice community has nearly doubled in size since 2000. Susan Enguidanos says it’s also changed a lot.
“Hospice organizations started as grass root efforts and were largely non-profit for a long time,” she says. “Now we’ve had a huge increase in for-profit hospices.” There’s a concern, says Enguidanos, that by discharging patients early, some hospices may be “trying to avoid costs that they should be responsible for.”
Whatever the short-comings of some hospices may be, Keyserling says that his biggest worry is that people who could be helped by hospice aren’t taking advantage of it in time. He says about half of patients die within 17 days of being admitted. And that turns hospice into “crisis care” instead of the comfort care it’s intended to be.
In summer fellowship, students pursuing health careers learn directly from the terminally ill
Skidmore College student Elisa Smith of MA, left, Union College student Matt Liquori of CT, center, and Colgate College student Yohary Fabian of Colonie with a practice mannequin at the Joan Nicole Prince Home
[M]atthew Liquori is spending his summer with dying people, and he knows what you’re thinking.
“Friends and family, when they hear, the first thing they say is, ‘Wow, that’s so depressing,'” he said. “But it’s really not.”
Far from it, the 21-year-old insists.
As part of a summer fellowship run by Union College, the incoming senior is spending eight weeks volunteering at the Joan Nicole Prince Home, a home where people with three months or fewer to live come to die in peace.
His program director calls it a crash course in death and dying — that human condition that strikes fear into the hearts of many but that future doctors, nurses and social workers will have to face head-on eventually. So why not face it sooner rather than later?
That’s how Liquori, a pre-med major at Union, recently found himself cooking chicken gizzards for a dying man and having one of his best days ever.
Rememberance board at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.
It was the man’s first day at the home, and the student volunteers wanted to know what he liked so they could go shopping and fill the cupboards with food he might eat. But the 51-year-old — a gaunt, depressed man on the losing end of a nearly three-year battle with rectal cancer — had no appetite and little success when he did try to eat.
“It’s a tough transition and I think he was overwhelmed and not really willing to open up to us,” Liquori recalled. “So eventually we were like, what’s your favorite food in the world? And he responded, ‘It’s this Greek gizzard soup my mom and grandmother used to make growing up that we’d always have before our big Easter feast.'”
When the students went out and came back with the ingredients for the soup, the man suddenly grew animated. He walked them through how to make his passed-down family recipe, took selfies with the students and called his mom to let her know what was happening. By the time it was ready, he was so excited he was shaking, Liquori recalled.
“It was an awesome welcome for him because right away he was like, ‘It’s gonna be OK here,'” he said. “And that was really cool. It’s days like that that aren’t depressing because you go home and you feel great, and you’re like, that was a great day.”
The Joan Nicole Prince Home is a unique operation. Only two people at a time are allowed to live at the house, a handsome little cape at the end of a quiet cul-de-sac in Scotia. That’s on purpose — any more and the home would have to be run like a medical facility, with all its rules, regulations, poking and prodding.
That’s exactly what its residents are trying to avoid, and what its founders had in mind when the home was built in 2006.
Living room at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.
Residents know they’re dying. Their doctors know they’re dying. By the time they arrive at the home, they’ve usually tried all the treatments, cures, medication regimens and so forth. Their time is up and they know it, and they just want to die in peace.
That’s hard to do in the cold and sterile atmosphere of a hospital, or at home where a loved one may not have the mental, physical or financial wherewithal to keep them comfortable. At the Joan Nicole Prince Home and other comfort-care residences, hospice workers visit to administer medical care and volunteers handle everything else — the cooking, cleaning, bathing, help going to the bathroom, or getting in and out of bed.
The psychological relief it provided Liquori’s patient, who wished to remain anonymous due to privacy concerns, and his wife was enormous.
“I can finally relax, you know? And my wife can finally breathe,” he said Thursday, puffing a cigarette on the home’s back porch. “She doesn’t have to walk in and go did you take this medicine? Did you take that medicine? Did you take this? Do I need to change your bandages? Do I need to change your colostomy? All that stuff. We can actually be husband and wife instead of patient and caregiver.”
Volunteers are needed 24/7, and three years ago board member Carol Weisse realized she had the ideal pool of candidates: wannabe doctors, psychologists and social workers.
Weisse teaches behavioral neuroscience, death and dying, health psychology and other courses at Union College in Schenectady. Hoping to marry the home’s need for volunteers and her students’ need for hands-on experience and research, she applied for a grant and launched the Community Action, Research and Education (CARE) Summer Fellowship Program, open to students from six liberal arts colleges across the state.
Students in the program volunteer 24 to 30 hours a week for eight weeks, gaining bedside experience and completing online coursework on death, dying and palliative care along the way. They also conduct research — last year students researched the changing nutritional needs of people in the final stages of life and turned it into an educational brochure for family members visiting the home to consult.
“Health care is very focused on cure — I’m going to cure this, I’m going to treat that, I’m going to give you medicine for this,” Weisse said. “But this experience forces students to step back and realize, there isn’t always a cure, but that doesn’t mean there’s nothing we can offer to alleviate your pain, your suffering. There is healing that happens at the end of life, and being present, being comforting and attentive is a form of medicine and it does provide healing.”
Liquori and the other student volunteers feel they’ve gained more invaluable insight into human health, psychology and empathy than they ever could have gained in the classroom.
Meditation room at the Joan Nicole Prince Home on Thursday, July 27, 2017 in Scotia, N.Y. The home is dedicated to providing a safe, comfortable and caring residence for terminally ill patients in need of a home during their final days. Five local college students are spending their summers caring for the terminally ill as part of a relatively new fellowship program offered by Union and Skidmore colleges.
Said Yohary Fabian, a 21-year-old pre-med student at Colgate University: “I want to be a doctor, and sometimes people die and you can’t save them. Sometimes there’s a disease and the knowledge for a cure just isn’t there yet. People suffer every day and we have to learn how to cope with it.”
Elisa Smith, a social work major at Skidmore College, found value in the art of silence — learning to be quiet and attentive, and not shying away from uncomfortable conversations.
“One of the hardest things has been listening to the residents talk about their fear of what’s to come,” she said. “But I found it was really helpful to (a resident) when I would sit out on the porch with him and just listen when he tried to talk about the things he was feeling. And I would say it’s one of the most life-affirming experiences I’ve ever had.”
Weisse’s dream is to one day grow the fellowship, which relies on grant funding, beyond the three homes it currently helps in the Capital Region. In addition to the Joan Nicole Prince Home, fellowship participants have volunteered at Mary’s Haven in Saratoga Springs and Gateway House of Peace in Ballston Spa. There are 30 such homes across upstate New York.
“We’re not going to learn how to be comfortable around death without practice,” she said. “And because health care and death have been so institutionalized over the years, we don’t really have a lot of practice anymore. This is sort of changing that culture.”
Puzzlingly, the older and more “seasoned” I become, the more this bit of Amish wisdom is true. Especially when it comes to reading. I don’t have time to read. So, I was surprised when I found myself reading a recent publication from the National Quality Forum. However, as serendipity would have it, I am so glad I did. This publication, “Strategies for Change: A Collaborative Journey to Transform Advanced Illness Care“ had me hooked with the introduction. They had the beautiful audacity to suggest that physicians can and do have the ability to engage in conversation about the taboo (their term) subjects of death and mortality. As I read further, I was rewarded with a section devoted to “peaceful death and dying.”
There has been debate about whether we truly live in a death denying culture. I believe that we do. Strongly so. Ernest Becker, in his Pulitzer prize winning book The Denial of Death, makes a compelling case that western societies are THE most death-denying in all of history. I see the results of this everyday. Our mortality, the inevitable finality of this life, is routinely disregarded as an essential contribution to the plan of care. The result is a series of squandered opportunities for healing and even transformation at the end of life. Very sick patients are referred to hospice without a prior discussion of goals of care and resuscitation status. Very sick patients travel from hospital to hospice house, often dying on route. But even more common is a never-ending procession of the dying patients and their loved ones who come to the end of life totally unprepared.
The poet W.H. Auden described death as “the rumble of distant thunder at a picnic.” It’s a brilliant metaphor. In my mind, in that scenario, we have 3 choices. The first choice is to totally ignore the thunder and hope that the storm blows north, but when the storm does hit, we will be totally unprepared and will be in some danger. The second choice is to recognize that the storm is coming, and to feel dread that it will totally ruin the remainder of the picnic, and yet do nothing to prepare for it. The third option is to recognize the threat that the thunder represents, to reorganize priorities and enjoy the good weather while you can, and then be packed and ready to seek shelter when the storm hits. I believe these metaphorical choices are similar to our society’s attitude toward death. Most of us choose the first 2 options in regards to our own mortality.
The medicalization of death and dying, increasingly prevalent following World War II, has placed physicians in a difficult situation. Advancements in medical technology, the rise of consumerism, and the strengthening voice of patient autonomy have encouraged society to give us the responsibility of managing death, but for the most part we are poorly trained and generally not inclined to do so. We have, however, made significant progress in helping patients and their families negotiate the myriad of decisions and break points they encounter as their health fails and they traverse the healthcare system. This progress, through many variations of advance directives, follows the thread of “quality of life.” I picture the patient as Indiana Jones, running through the jungle, dodging spears and traps, tumbling and rolling, and finally seeing the clearing in the trees. With the screen focused squarely on their face, I see the expression go from anticipation and relief to dread as they look down into the 10,000 foot abyss. Advanced Directives and Goals of Care discussions may get them through the jungle, but when it comes time to die, they are horribly unprepared. Very little time, they realize, was spent considering the quality of their death. It is time to die, and they haven’t imagined themselves on this death bed.
Dying patients and their loved ones today enter a space totally unfamiliar. One hundred years ago, most Americans grew up in household where death occurred and dying was more accepted as a part of daily life. Today, many of us live on the surface of life, existing from Tweet to Tweet. Richard Groves calls this “the demon of busyness.” Our attention span has been measured in seconds. Dying, and being with the dying, often requires sitting with uncertainty for long periods of time. We are very uncomfortable being there. It often does not sound, look or smell nice. Dying is the ultimate time of transition for those involved in the loving and caring for the dying. Without experience, and with difficulty accepting uncertainty, many patients and families come to the dying time unaware of what to expect, and worse, how to prepare.
We need to work much harder at preparing our patients for end-of-life. This is not our responsibility alone, however. There seems to be a grassroots movement developing that encourages open discussion about death and dying. Social media is exploding with new and increasingly innovative ways to initiate and encourage this dialogue. The demon of busyness is being met head on by card games, like “GoWish”, and interactive art such as the “Before I Die “ walls. These social instruments allow our society to begin the uneasy discussion about what has been taboo. In medieval times, the practice of “ memento mori,” a constant gentle reminder of their own mortality, served the purpose of improving the quality of their life, But it also improved the quality of their death. They heard the thunder, they prepared for it, and they enjoyed the picnic.
We can, and should, be part of the discussion. We should initiate it and foster it. Consider hosting a Death Cafe or buy and distribute GoWish card games. Volunteer at a local hospice doing bedside vigils, and write about what you learn. We can become more comfortable in talking about quality of death. We can improve the quality of our patients lives by helping them consider the quality of their dying. It will require that we prepare ourselves by facing our own mortality. We can and should be living and breathing versions of memento mori. We should not run and hide. Our death denying culture needs leaders to help our very sick and dying face the abyss. If not us, then who…?
[F]or those of us who had hoped that American attitudes toward death were shifting in ways that would promote a wider reconstruction of the health-care system, there’s discouraging news from Health Affairs, the preeminent journal of health policy. It devotes its latest issue to “end-of-life” care and finds that — at least so far — the power to make health care more compassionate and cost-effective is limited.
That was the vision. Americans would become more realistic about death. Through “living wills,” they’d reject heroic — often futile — treatment to keep them alive. Health spending would be lower (by one estimate, a quarter of Medicare spending occurs in the last year of life). People would die with dignity. They’d be spared needless suffering.
Superficially, the vision seems to be triumphing, according to the 17 studies in Health Affairs. By one study, a third of American adults — and nearly half those 65 and older — have some sort of living will. From 1999 to 2015, the share of Americans who died in hospitals dropped from more than half to 37 percent. Over the same period, the number dying at home or in a hospice rose from less than a quarter to 38 percent. Moreover, at 8.5 percent of health costs, spending in the last year of life is lower in the United States than in some other countries.
But on inspection, the gains seem less impressive. The share of people with living wills has remained stuck for six years. According to another study in Health Affairs, the increase in hospice care is not substituting for expensive hospital care but adding to it. Said the study by Melissa Aldridge of Mount Sinai hospital in New York and Elizabeth Bradley of Vassar College:
“What has emerged [is] a relatively new pattern of hospice use. . . . Hospice enrollment [has become] an ‘add-on’ in health care after the extensive use of other health care services and within days of death.”
Patients receive expensive care until nearly the end, when they’re switched to hospice care. This obviously limits the potential for reducing costs and for relieving patients’ suffering. In addition, spending for the last year of life, though significant, is still a small share of total spending, refuting the argument that the high cost of dying explains why U.S. health care is so costly.
“We found that U.S. health spending [during the last year of life] was less than one-tenth of total U.S. health care spending [8.5 percent] and thus cannot be the primary cause of why U.S. health care is so much more expensive than care in other countries,” concluded another study in Health Affairs headed by Eric French of University College London.
(The fact that the effect on Medicare is much larger reflects simple arithmetic: Because Medicare represents only about a fifth of total U.S. health spending, the spending in the last year is being compared with a smaller base.)
None of this means that end-of-life care can be ignored. Indeed, the problems will almost certainly worsen, because much care-giving is by families and friends. Already, 29 percent of the adult population — two-thirds of them women — consider themselves caregivers.
As the population ages, the burdens will grow. In 2010, the ratio of potential caregivers (people 45 to 64) to those aged 80 and older was 7-to-1; by 2030, it’s projected to be 4-to-1. Alzheimer’s cases are increasing. Spending pressures on Medicare and Medicaid will intensify.
Just whether the persistence of high-cost care reflects good medicine, a deep human craving to cling to life, or both is unclear. But the rhetoric about “end-of-life” care has changed more than the reality. To the question — Can we die in peace and with dignity? — the answer is “not yet.”
Eighty percent of terminally ill patients say they want to avoid hospitalization and intensive care at the end of their lives. But such hospital stays nevertheless occur fairly frequently ― even though they don’t seem to make much difference. Studies have shown that people who received less intense care in the last six months of life did not have a higher mortality rate than people who received more intense care.
So it’s worth asking why elderly and terminally ill patients are put through stressful hospitalizations, procedures and medical tests that only wind up blemishing their final days.
One reason: Hospitals can do it, and Medicare will pay for it.
Some patient advocates and chronically ill patients want to reduce end-of-life hospitalizations through the use of advance care planning directives. The most common of these is the “do not resuscitate” order, which instructs the hospital and doctors that if your heart stops beating or you stop breathing, you do not wish to have CPR. Absent such a directive, hospital staff will try to help any patient whose heart or breathing has stopped.
Far less common ― but potentially much further-reaching ― are “do not hospitalize” directives, which stipulate that you don’t want your caregivers to take you to the hospital for care. A recent study found that these orders are indeed effective at preventing unwanted hospitalizations.
A small research study of nursing home residents in New York state found that overall, 6 percent of residents had DNH orders. Of those people, just 3 percent spent time in a hospital during their last 90 days of life, compared to 6.8 percent of people in the study who did not have a DNH order. In other words, the people who did not have an order were more than twice as likely to be hospitalized.
On a practical level, having a directive that says you don’t want to be admitted to a hospital ― except under certain conditions, specified by you ― basically means a nursing home or family caregiver will do what they can to treat you and let nature take its course. Hospice care is available through Medicare as well.
Family caregivers sometimes mistakenly think “do not hospitalize” means “do not treat.” But that’s not the case. A DNH order can stipulate that under specific circumstances, like if you are bleeding or in extreme pain, you do, in fact, want to be treated at a hospital.
Advance medical directives have been publicly encouraged for a long time, yet only 38 percent of Americans have them, according to a recent study. Perhaps it’s because death and dying are topics that make us uncomfortable. Or perhaps it’s just that directives don’t always work.
Doctors are not legally bound to follow your advance directive. The law gives them and others legal immunity if they follow your wishes ― but they are not obligated to do so. In fact, doctors can refuse to comply with your wishes if they have an objection of conscience or consider your wishes medically inappropriate. If that’s the case, they have an obligation to transfer you to another health care provider who will comply, according to the American Bar Association. But this is hardly a guarantee that your directive will ultimately be carried out.
A bigger problem may come from the ambulance crew. Advance medical directives are pretty ineffective once someone dials 911. The job of a first responder is to attempt to resuscitate the patient and transport them to a hospital. If you don’t want that to happen, why call?
Overall, DNH orders aren’t being widely used. In 2007, a Harvard Medical School researcher examined a national database of more than 91,000 nursing home residents with late-stage dementia, and found that just 7.1 percent had DNH directives.
But not everyone thinks that’s a bad thing. Dr. Rebecca Sudore, a geriatrician and medical professor at the University of California, San Francisco, said that while “DNH may be good for decreased costs, it is not always the best thing for the patient.”
“Although DNH may be appropriate for some patients, I am concerned about what widespread DNH orders may mean on a population level,” Sudore told HuffPost in an email. “It may be appropriate for some, and not appropriate for many other people. I think that other outcomes such as controlled symptoms, relief of suffering, quality of life, satisfaction, caregiver stress etc. are as important, if not more important, than hospitalization.”
She noted that the “the goal should be to honor patients’ wishes and to provide care that alleviates suffering
“For some people, staying out of the hospital may accomplish their goals if they have access to good quality symptom control and care,” she said. “For other people who are suffering from symptoms that cannot be controlled at home or in a nursing home, then being in the hospital may be the best way to honor their wishes and prevent suffering.” And those wishes should be optional, she said, and subject to change.
Two employees from Alive Hospice take on acting roles as a terminally ill patient and a family member as part of a training simulation to help a doctor learn to speak openly about end-of-life care.
[T]he doctor pulls up a chair next to his patient, a 74-year-old woman with lung cancer. He tells her she doesn’t need more chemotherapy. Her eyes perk up; has she beaten her cancer? As it turns out, no. Her cancer has metastasized. She only has six months to live, at most. But her doctor is unable to find the right words.
“My cancer’s not gone? I thought it was getting better,” the patient says, bewildered.
“That’s the tough part …” the doctor replies.
“So, no further treatment?”
“I think we need to focus on quality [of life] over quantity.”
“Are you saying I’m dying?”
From the other side of a two-way mirror, Anna-Gene O’Neal listens closely. She’s set up this simulation — the prognosis is part of a script; the patient is an actor; the physician is being recorded — to improve the way he broaches the topic of death with real patients. O’Neal hears the mock patient all but pleading with the doctor to give her a direct answer. He struggles to do so. After a few minutes, she opens the door to end the simulation.
O’Neal, who runs Alive Hospice here in Tennessee, launched the SHARE simulation lab last year. Participants run through four scenarios. The actors playing patients reply with all the emotions — confusion, denial, anger, grief — that doctors might encounter in real exam rooms. Afterwards, O’Neal sits with the doctors as they watch tape of these interactions on a big-screen TV.
Faced with the uncomfortable task of discussing death, doctors often avoid the topic. Only 17 percent of Medicare patients surveyed in a 2015 Kaiser Family Foundation study said they had discussed end-of-life care — though most wanted to do so. Since that study, Medicare has begun reimbursing providers for having these conversations. Yet still, just a fraction of Medicare recipients at the end of life have those talks with their doctors.
In response, advocates for improving end-of-life care have launched training sessions for doctors around the country.
In California, Stanford’s palliative medicine department has trained dozens of hospice nurses using exercises similar to those carried out here by Alive. In New York, oncologists at the University of Rochester Medical Center observe their peers having conversations with real patients facing terminal illness. In Arizona, the administrators of Phoenix-based Hospice of the West hold regular training sessions, complete with small group discussions, at staff meetings.
Simulators with live actors have intuitive appeal, especially since doctors rarely get hands-on experience with these tough conversations in medical school. But Dr. Scott Halpern, director of the University of Pennsylvania’s Palliative and Advanced Illness Research Center, said there’s little evidence that simulators are any more effective than any other clinical training to improve end-of-life counseling. They show a “tremendous amount of face validity,” he said, but they must be held “to a standard of showing benefits for patients, not a standard of an appealing anecdote.”
O’Neal, 50, agrees more evidence is needed. But she’s also so gung-ho about her simulator that she’s pushing to expand it across the country. Four health organizations — including faith-based Ascension Health — have agreed to let Alive train their clinicians. Later this year, O’Neal plans to work with medical students at one school in Tennessee. Down the road, she hopes to get some independent practice associations to require their members to undergo her training.
“It’s about doing the right thing,” O’Neal said. “I feel strongly that if you do the right thing by people, they’re going to make different decisions.” That shift could lead to more of what she calls “good deaths,” with patients fully aware of their prognosis and able to choose whether they want aggressive, long-shot treatments or would prefer to simply have their pain managed while they spend their final days with friends and family.
Alive Hospice CEO Anna-Gene O’Neal chats with a doctor who went through a simulated scenario about how he can improve his communication with patients.
The little things that can make a big difference
Two of O’Neal’s closest friends died young from breast cancer. Seeing their hospice nurses bring light to the darkness of death prompted O’Neal to think back on her own professional experiences caring for babies as a neonatal nurse and for the elderly as a health care executive. What stood out: the power of clear, concise communication between clinician and patient.
O’Neal came to believe health providers in all specialties should be trained to have such direct conversations. In 2012, she was hired as CEO of Alive Hospice, a nonprofit chain of hospice care facilities serving more than 3,500 patients and families a year in central Tennessee. She soon realized that many Americans lived in “a crisis of denial of our own mortality,” in part because “medical institutions encourage us to never give up.”
So she launched the SHARE simulator. Clinicians pay to participate — $350 to work through four scenarios and then watch the videos and get feedback from O’Neal or her staffers. (To give doctors more privacy, Alive deletes the footage after each session, handing them the only copy so they can review it later if they’d like.)
The work unfolds in a low-slung brick building near Nashville’s Music Row, in a room that looks like a typical hospice or hospital room, set up with a bed, a couch, a box of tissues, and a stack of travel magazines. Tiny microphones dangle from the ceiling to record audio without intruding on the intimacy of conversations. Video cameras shaped like domes are mounted on the walls.
So far, O’Neal has trained 12 doctors and 65 other clinicians, including nurses and social workers. O’Neal said some have already tweaked their communication style: Maybe they’re more comfortable with long pauses after breaking hard news to patients, or more aware of body language that may come off as too stern.
“Watching yourself, you get a feel for your posture, whether you’re using specific phrases, looking a person in the eye, or keeping focus on them,” said pulmonologist Dr. Richard Fremont. “It was helpful seeing what I thought I was doing.”
Dr. Robert Taylor, a nephrologist based in Nashville, initially found the cameras in the training room unnerving. But the actors quickly pulled him into the scenario.
“It’s awkward to see yourself,” he said, describing the experience of watching the footage later. But he noticed little things, like his posture and the inflection in his voice. When he saw the mock patients’ reactions, he realized that little shifts in his own approach could change their perception of the conversation.
Taylor said he’s been committed to frank discussions with patients ever since he recognized, early in his career, that dialysis patients rarely got a full picture of their options. Their doctors were often focused on keeping them alive. But the disease and the treatments often make them “so fatigued that it’s not the quality of life they desire,” he said. Ever since, Taylor said he’s taken pains to better communicate all options to his patients; he wanted to go through the simulator to hone that delicate art. “It can alter what you do,” he said, “but also confirm your answers.”
O’Neal said the simulator challenged other doctors’ views that a patient’s death must inevitably be viewed as a failure.
“Once you get doctors into the training, you create an opportunity for them to be vulnerable and see themselves differently,” O’Neal said. “Whether they admit to change or not, they will change.”
A political divide over end-of-life conversations
When the idea of paying doctors to talk about dying was first debated – during the early, bitter fights over the Affordable Care Act in 2009 – conservatives warned that such conversations could be a pretext for pushing the frail and elderly to give up on treatment. Former Alaska Gov. Sarah Palin said funding of end-of-life counseling amounted to a “death panel.” Iowa Sen. Chuck Grassley said it could enable “pulling the plug on grandma.”
The debate still rages: Earlier this year Iowa Rep. Steve King introduced the Protecting Life Until Natural Death Act, which would end federal reimbursements for end-of-life discussions. King has described such conversations as “intolerable to those who respect the dignity of human life.”
But despite such efforts, O’Neal sees growing support for her approach on Capitol Hill. Last month, a bipartisan group of lawmakers — including Democratic Sen. Mark Warner of Virginia and Republican Sen. Johnny Isakson of Georgia — filed a bill that would provide $50 million to fund access, education, and training related to end-of-life treatment for terminally ill patients.
“Encouraging patients and their families to have these conversations with their physician helps provide peace of mind and undoubtedly increases the likelihood a patient’s care will be consistent with their wishes,” Tennessee Congressman Phil Roe, one of the bill’s sponsors, said in a statement.
O’Neal concurs: Such conversations, she said, empower patients to embrace death on their own terms — and can make those final days “the most meaningful part of the human experience.”
“If somebody’s faith is such that as long as there’s a beating heart, you keep doing everything, we’re 100 percent behind that,” she said. “But if someone says, ‘if I can’t walk to play 18 holes of golf, I’m done,’ we have to respect that as well.”
A doctor, sitting inside Alive’s training room, watches footage of his interaction with a patient and her daughter.
A second chance
O’Neal asks one of her staffers to turn on the big-screen TV in the simulator room so the doctor can review his performance with the 74-year-old patient. As the footage rolls, the doctor grips one of the arms of his chair, bearing a slight grin of discomfort as he watches his fumbling attempts to tell the mock patient she’s dying. Soon, he’s critiquing himself:
“I think I would have been much less polite if I wasn’t on camera …”
“I would’ve been more blunt …”
“That could’ve been done faster …”
After he’s finished, she chimes with nuggets of advice: Don’t let her chase answers. Communicate like it’s a conversation. Honesty is a form of compassion.
“It’s intimidating,” O’Neal reassures him.
The second scenario goes far better. In it, the same patient returns two weeks later with a slew of strange treatment suggestions a relative found on the internet, including a raw beet diet and blood transfusion at a clinic in Juarez, Mexico. The doctor listens intently, careful to let her finish, mindful of his body language.
After she’s done, he leans forward and steers the conversation in another direction. He makes eye contact.
Then, he says in a calm empathetic tone: “We need to start thinking ahead.”
