[A] fresh look at how Do-Not-Hospitalize (DNH) orders affect the movement of skilled nursing care residents shows those residents with such directives experienced significantly fewer transfers to hospitals or emergency departments (EDs). Report authors said long term and post-acute care providers may see the information as evidence that considering DNH orders in end-of-life care plans could benefit residents and the nursing center in which they live.
“Residents with DNH orders had significantly fewer transfers. This suggests that residents’ end-of-life care decisions were respected and honored,” the authors said. “Efforts should be made to encourage nursing home residents to complete DNH orders to promote integration of the resident’s values and goals in guiding care provision toward the end of life.”
Results of the new study are in the May issue of The Journal of Post-Acute and Long-Term Care Medicine (JAMDA) in an article titled, “Are Hospital/ED Transfers Less Likely Among Nursing Home Residents with Do-Not-Hospitalize Orders?” JAMDA is the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine.
The design of the study saw researchers examine Minimum Data Set 2.0 information from more than 43,000 New York state skilled nursing care residents. Of that number, 61 percent of residents had do-not-resuscitate orders, 12 percent had feeding restrictions, and 6 percent had DNH orders.
“Residents with DNH orders had significantly fewer hospital stays (3.0 percent vs 6.8 percent) and ED visits (2.8 percent vs 3.6 percent) in their last 90 days than those without DNH orders,” the report said. “Dementia residents with DNH orders had significantly fewer hospital stays (2.7 percent vs 6.3 percent) but not ED visits (2.8 percent vs 3.5 percent) than those without DNH orders.”
After adjusting for statistical variables, researchers said the results show that for residents without DNH orders, the odds of being transferred to a hospital was significantly higher than those with DNH orders.
One of the report’s authors, Taeko Nakashima, PhD, visiting assistant professor, State University of New York (SUNY) at Albany and adjunct assistant professor at Rutgers University, stresses that preparing DNH orders requires collaborative efforts and thorough discussion among the residents, health care proxy, and the attending physician about the goals of the resident and the resident’s prognosis and treatment options.
“Ethical end-of-life care in nursing homes must respect the resident’s autonomy and advance directive,” she says.
Linda Norlander is one of six reader columnists for The News Tribune.
By Linda Norlander
We sat at the kitchen table with coffee and the forms. My father-in-law, Wally, had summoned me to help him fill out one of those “living will things.” We talked about what was important to him, now that he was in his 80s.
He was clear. “I’ve had a good life. I’ve never buried a child or a grandchild. When it’s time for me to go, I don’t want one of those young doctors trying to save me.” His main wish for health care at the end of his life was to be pain-free.
However, Wally’s gift to his family was not just the paper we filled out that day. His larger gift was the conversation he had many times with the family about his wishes.
When the time came that he was unable to speak for himself, and the doctors wanted to place a feeding tube to prolong his life, we were all on the same page. As my mother-in-law said, “Wally wouldn’t want that.”
With the support of hospice, he was able to say good-bye to his children and grandchildren and dispense a few words of wisdom. I remember that he advised our son with a chuckle, “You go to college. That’s good. But someday you need to get a job.” He died peacefully with all of us at the bedside.
When I meet people and tell them that I’ve worked in hospice and end-of-life care for many years, they often open up with their own stories. Unfortunately, too many of them do not end with, “I was able to carry out Mom’s wishes.” Instead, they are descriptions of having to make harrowing decisions for a loved one in the moment of crisis. I think about the son whose mother had a major stroke and was in a coma. He was told by the neurosurgeon that they would have to do surgery or she would die. What child wants to say, “No, let Mom die.”
They did the surgery and she died six weeks later, among the tubes and medical apparatus of an intensive care unit. To this day, he second-guesses whether he made the right decision. “Her last weeks of life were horrific.” When I’d asked him if he had ever talked with her about what she might want, he’d shrugged and said, “It never came up.”
We live in an era of incredible medical advances. We can replace kidneys, hearts, knees and hips. We have pacemakers, effective heart medications and all sorts of treatments for failing systems. What we usually don’t have are honest conversations about the treatments and what they might mean for the quality of life. To the son whose mother died in the intensive care unit, no one said, “If your mother survives she will likely be bedridden and comatose for the rest of her life.”
I am a proponent of doing four things regarding end-of-life care. First, sit down at the kitchen table with your family and have an honest conversation about what quality would mean for you if you weren’t able to speak for yourself. Second, name your health care power of attorney — the person who would speak for you — and give them your blessing that you will trust their decisions. Third, fill out an advance directive (the living will.) And fourth, do this now rather than waiting for a health care crisis.
I know, from years of working in the medical system, that in the moment when difficult decisions have to be made, very few doctors will seek out the health care directive document and say, “This is what your loved one wanted.” More likely, they will look at the family members and ask, “What do you want to do?”
In fact, when it came time to make decisions for Wally, we couldn’t find the health care directive. But the family knew what he wanted and we provided a united front regarding his wishes. Two weeks after he died, we finally found the form — in my mother-in-law’s underwear drawer. By then, though, Wally had already given us his gift.
A dialysis center in Paterson, N.J. Illnesses like renal failure often prove terminal, yet their uncertain progression can make it hard for patients and their families to start the conversation about palliative care and hospice.
By Dhruv Khullar
[H]er last conversation should not have been with me.
I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.
I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.
“If we do it, when will I…” she paused. “When will I wake up?”
I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.
“O.K.,” she said. “Do it.”
There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.
For years the medical profession has largely fumbled the question of what we should do when there’s nothing more we can do. A new wave of research sheds light on what patients want at the end of life, and who is — or isn’t — getting it.
Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days. On average, patients make 29 visits to the doctor’s office in their last six months.
In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.
Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.
It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else.
Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.
Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.
We’ve made significant progress in recent years: The availability of palliative care services has increased 150 percent over the past decade, and compared with patients in other developed countries, older Americans with cancer are now the least likely to die in a hospital (22 percent versus up to 51 percent). But not everyone has benefited from the palliative care movement: Large disparities remain by geography, race and type of illness.
Ninety percent of hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do. Patients treated at for-profit and public safety net hospitals (known for taking in those who have no insurance) are much less likely than those in nonprofit hospitals to have access to palliative care.
How patients answer questions about overall life goals can inform treatment decisions, especially near the end of life.
By Felice J. Freyer
The four medical schools in Massachusetts have jointly agreed to teach students and residents how to talk with patients about what they want from life, so future doctors will know how far to go in keeping gravely ill patients alive.
How patients answer questions about their overall life goals can inform treatment decisions, especially as people near the end of life.
“We’ve trained all doctors to ask people, ‘Do you smoke?’” said Dr. Harris A. Berman, dean of the Tufts University School of Medicine, who met with colleagues last week from the medical schools at Tufts, Harvard, Boston University, and the University of Massachusetts. “We’ve trained people to ask about sexual preference. That used to be a difficult discussion to have.”
Now, Berman said, doctors need to learn how to ask even more deeply personal questions, such as: What most matters to you? What do you need to make life worth living? In what circumstances would you rather not be alive?
The medical schools’ plans to change their curriculums stem from the work of the Massachusetts Coalition for Serious Illness Care, a year-old consortium working to ensure that every resident receives the medical care they want — no more, no less. Dr. Atul Ga-wande, the surgeon and author who helped found the coalition, approached Berman about coordinating an effort among the medical schools.
Meanwhile, on Tuesday, the coalition will mark its first anniversary with the release of a survey of 346 adults who live in Massachusetts, conducted this year. Nearly all residents surveyed said it’s important to talk about their wishes for medical care if seriously ill or near the end of life, but 35 percent had not had that conversation with anyone.
When end-of-life conversations with a health care provider did take place, they were initiated by the patient two-thirds of the time. But three-quarters of those surveyed who said they had spoken with a health care provider about their wishes found that the talk was not difficult.
“People think having the conversation is scary,” said Maureen Bisognano, the coalition’s cochairwoman and senior fellow at the Institute for Healthcare Improvement. “What we’re finding is, when people actually do it, there’s a sense of relief, a sense of peace that you have expressed your wishes to someone.”
Doctors should have this conversation with patients, Berman said, when asking about their medical and family history, before they become ill. And the conversation needs to continue throughout life as circumstances and attitudes change.
Berman said that the schools’ academic deans will collaborate on the best way to incorporate this philosophy throughout medical school and residency training. It can’t be taught in a single class, he said. He expects the curriculum changes to be adopted within a year.
In collaborating on a curriculum change, the medical schools will be building on a successful effort in 2015 to add instruction about prescription painkillers and opioid addiction.
The Massachusetts Coalition for Serious Illness Care started last year, when Blue Cross Blue Shield of Massachusetts brought together leaders in end-of-life care and dozens of organizations concerned with health care and aging. It is funded with $200,000 a year from Blue Cross and the Rx Foundation, which works to improve the quality of hospital care.
With 58 members a year ago, the group has now grown to more than 70. Each organization commits to promoting the coalition’s goals: that all adults have designated a health care decision-maker and have spoken with that person about their wishes; that all clinicians are trained to discuss advance care planning and serious illness care; and that systems are in place to make sure patients’ wishes are documented and honored.
Many of the coalition members had already been working on those issues for years. But they say the coalition bolsters those efforts. “Having to talk about it, being held accountable to a group of our peers — that makes you want to achieve things and achieve them faster. . . . It’s also really a way to hold people’s feet to the fire,” said Anna Gosline, senior director of health policy and strategic initiatives at Blue Cross, which offers workshops in advance care planning for its employees.
Dr. Diane E. Meier, director of the Center to Advance Palliative Care in New York, has been watching the Massachusetts coalition and praised it as “the kind of social movement we need.” Meier, who received a MacArthur “genius” fellowship for promoting palliative care — medical care focused on relieving the stress and symptoms of serious illness — said the coalition is on the right track in focusing on what is valuable in life rather than planning for death.
“The public knows we can’t plan for end of life,” she said. “You can’t know what’s going to happen. Asking us to make decisions about an unknown future is irrational.”
Elaine Seidenberg learned how complicated such decisions can be when she moved into Orchard Cove, a housing community in Canton that offers elders an array of social and medical services.
Seidenberg thought she had everything in order. She had a folder for each of her two children with all the legal forms laying out her end-of-life wishes. But a woman from an Orchard Cove wellness program threw her for a loop when she asked, “What are your goals?”
Seidenberg realized that she had not provided enough information for her children. “Usually when you’re doing end-of-life planning . . . it revolves around things that you don’t want done to you,” she said. “I never really thought about what made my life worth living, what I would be willing to tolerate, and what I wouldn’t.”
After a lot of thought, she realized she most values “giving back to the community, being able to communicate freely and effectively with other people.”
Last year, for the coalition’s launch, Blue Cross commissioned a survey of 1,851 Massachusetts adults. It found that more than half had not named a representative to make health care decisions if they were incapacitated, often because they weren’t sick and didn’t think it was necessary.
This year, surveyors reached out to 860 people from the original survey, and 346 completed a follow-up. The survey was conducted in February and March by the research firm SSRS and the University of Massachusetts Medical School.
Among those who reported a loved one’s death in the past two years, only half rated the care received at end of life as excellent or very good, and a little more than half said their loved’s wishes were followed and honored.
Gawande said those responses represent a “very poor” showing for end-of-life care. When asked about other types of care, such as surgery or cancer care, nearly all patients rate their care as excellent or good, he said.
“This an ambitious agenda,” Gawande said of the coalition’s work. “It’s going to take years to move the needle.”
[O]livia Bareham wants to change people’s perception about death. “I want to break the taboo where we are excited about birth but dread death,” the death midwife said. “What if they were both explosive, incredible events?”
Part of a death midwife’s job is to sit with the dying at the end of their life. “To be able to bear witness to their dying process,” said Bareham. “The midwife is also looking beyond the last breath. We hold the space, not just for dying but for the funeral, burial or cremation rituals and even beyond that, to help the family and friends grieve.”
It’s hard to accept a terminal diagnosis.
“Some people can’t believe they are dying,” Bareham said. “It is unbelievable. It’s unbelievable that we’re even here. Once you play with the idea of the unbelievable-ness of everything, it’s not so unbelievable that you’re dying.”
Bareham believes a funeral or celebration of life service and properly grieving are important parts of the process.
“It’s declaring that the lost loved one counted and mattered and meant something to those left behind,” she said. “If you miss that, it’s sad, but perhaps it’s even more sad for the family and friends who have lost an opportunity to lean into their own mortality.”
Loved ones decorate a simple casket for a home funeral. Wooden caskets are also available. This cardboard one holds up to 200 lbs. weight.
Bareham has this advice for the living and dying: “Build a relationship with death. Befriend death. Be open to every little nuance of what it means to be alive — which includes pain, sorrow and loss — so you’re not thrown off by a catastrophe. Write your healthcare directive and death care directive because you never know when the end will come. And make peace with anyone with whom you have had conflict.”
All passings are different and not everyone gets a terminal diagnosis where they have time to plan their final moments. Having helped more than 200 people in and around Malibu as they die, or arranged their home funeral, Bareham has an idea how she’d like her own death to be.
Learning to lay a body in honor on a Death Midwife course. One of the attendees plays the body here.
“Some people want to be left alone at the moment of death. I wouldn’t mind having people in the room with me, but I wouldn’t want them touching me and close to the bed. Having a dear friend who totally gets me sitting vigil and holding the space is an anchoring that makes the dying feel safe.”
Just as there’s a popular movement toward natural childbirth, Bareham prefers the idea of a natural death. She isn’t saying don’t ever take morphine to help ease any pain, but suggests not taking so much that you aren’t aware of what’s going on. She may not want someone holding her hand or stroking her head at the end, “or telling me it’s OK to go,” she said, but is happy to do that for others, if that’s what they want.
For Bareham, a good death would be where she is aware of what is happening, where she is prepared and feels a sense of completion and fulfillment of the life lived — “so my dying is just another breath. I am ready and excited for what’s next.”
Bareham advises against waiting until you know you’re dying to forgive people who have hurt you or ask forgiveness of those you might have hurt. “It happens so quickly, and then you’re lost and scrambling. Try to stay in a state of consciousness that if death came, if a massive earthquake hit right now, you’d have a level of excitement,” she said.
People from all walks of life complete Bareham’s death midwifery course. “More young people in their 20s are doing it because they feel something is missing in our culture regarding death,” she described. “Some have been volunteering at a hospice, or are social workers. Others are intrigued with the idea that after the last breath, you can keep the body at home for three days and arrange a home funeral. Or they’ve had a horrible experience of death and are looking for healing.”
Bareham, who is fighting fit and looking forward to a long life, doesn’t find her career depressing.
“Death is just another chapter in life’s journey,” she said
[O]nly one in four Americans has written down their end-of-life wishes in case they end up in a hospital bed unable to communicate — despite high-profile cases over the years that have plainly shown the emotionally painful, expensive and sometimes lawsuit-ridden consequences of not making those wishes known in advance.
A group of UC San Diego nurses and doctors is engaged in an effort to increase that ratio, building a wide-reaching campaign that started with just five letters and a question mark.
Operating like a guerrilla marketing group, albeit with the approval of two key hospital bosses, they began posting signs at both UC San Diego hospitals and its seven largest clinics. The signs simply asked: “WGYLM?”
At first, they refused to explain to others what those letters meant.
“We considered that a great victory to hear, that we were irritating people with our message. It totally primed them to be on the lookout for the answer,” said Dr. Kyle Edmonds, a palliative care specialist.
In March, the letters expanded from a five-letter bloc into the question, “What Gives Your Life Meaning?” There were small signs spelling it out and seven chalkboard-size whiteboards with the question written in large letters at the top. A bucket full of Post-It notes and pens was attached to each whiteboard display and very quickly, people wrote and pasted up their responses.
God has figured into many of those messages. There also have been plenty of first names, heart outlines and attempts at humor — including a note that said, “cheese biscuits.”
Some have been quite dark. Politics have been mentioned as well, including President Donald Trump and his proposed border wall.
The next step for the project group, after thousands of notes had built up, was to add the kicker question: “Have you told anybody?”
It’s not enough to answer the question for yourself, said Edmonds and colleague Cassia Yi, a lead nurse at UC San Diego. They want people to tell their loved ones — in writing — what matters most to them, including how they want to be treated upon death or a medical emergency.
The campaign’s organizers hope that getting people to think about the best parts of their lives will provide an easier entry point for end-of-life planning.
The National Hospice and Palliative Care Organization recommends that everyone fill out an advance directive to make their wishes known in writing. Also often called “living wills,” these are witnessed legal documents that confer medical power of attorney to the person you designate if two doctors certify you are unable to make medical decisions.
Each state has its own form, and California’s asks people to specify whether they want a doctor to prolong their life if they have an irreversible condition “that will result in … death within a relatively short time or if they “become unconscious and, to a reasonable degree of medical certainty … not regain consciousness.”
This has been fraught territory, with many high-profile cases in the courts of distraught families wrestling over the decision to remove life support without any knowledge of the patient’s true wishes.
That includes the case of Terri Schiavo, who was left in a persistent vegetative state after a heart attack in 1990 caused severe brain damage. Her parents clashed with her husband, Michael, who asked the court to order her feeding tube removed in 1998 on grounds that she would not have wanted to live in such a state. Because she had no living will, it took years of very public legal wrangling before life support was disconnected on March 18, 2005.
Yi said she and other nurses feel this type of gut-wrenching stress every time a “Code Blue” page sends them scrambling for a patient who needs immediate resuscitation. Most of those patients don’t have wills or other written indications of their wishes in place, even though every patient is asked if they have an advance directive upon admission to the hospital.
“Advanced care planning wasn’t happening until people were coding out. There is nothing advanced about that,” Yi said.
Even before the current awareness campaign, Yi and her colleagues had worked with computer experts to add special categories to UC San Diego’s electronic medical records system that provide a single collection point for this kind of information. Previously, such details could be entered in dozens of different places, depending on the whims of whoever was taking notes at any given moment.
The project team also got the computer programmers to add a shortcut that allows caregivers to quickly access an advance-directive template.
Since the revamped system went live in February 2015, Edmonds said there has been a 469 percent increase in the number of patient charts that include some sort of information about end-of-life care.
But the project was not reaching every patient — or enough of the university’s medical staff.
Yi recalled a trip that some UC San Diego nurses took to the CSU Institute for Palliative Care at Cal State San Marcos. There, they saw “WGYLM?” signs and learned what the acronym meant. At the time, Cal State San Marcos was in the early stages of creating the “What Gives Your Life Meaning?” project.
The nurses thought: Why not adopt that program for UC San Diego as well? They liked that the operation could be rolled out in a provocative way and that it didn’t simply ask people to fill out advanced directives.
“It just makes an introduction in a more positive, intriguing light,” Yi said.
So far, nearly 1,300 employees in the UC San Diego Health system have taken the pledge to prepare their end-of-life documents and talk with their loved ones about these issues.
Sharon Hamill, faculty director of the palliative care institute at Cal State San Marcos, said the “WGYLM?” campaign has been held on that campus for three years in a row and has spread to sister campuses in Fresno and Long Beach.
She said the signature question was created by Helen McNeil, who direct’s the California State University system’s multi-campus palliative care institute, which is also housed on the San Marcos campus.
Hamill also said the message resonates strongly with people of multiple generations, including college students taking care of ailing grandparents or even parents.
“I love it when one of them stops me somewhere and tells me they saw one of the signs and were thinking about it all the way to class,” she added.
For more information about advance directives, go to nhdd.org.
[I]N 1662 a London haberdasher with an eye for numbers published the first quantitative account of death. John Graunt tallied causes such as “the King’s Evil”, a tubercular disease believed to be cured by the monarch’s touch. Others seem uncanny, even poetic. In 1632, 15 Londoners “made away themselves”, 11 died of “grief” and a pair fell to “lethargy”.
Graunt’s book is a glimpse of the suddenness and terror of death before modern medicine. It came early, too: until the 20th century the average human lived about as long as a chimpanzee. Today science and economic growth mean that no land mammal lives longer. Yet an unintended consequence has been to turn dying into a medical experience.
How, when and where death happens has changed over the past century. As late as 1990 half of deaths worldwide were caused by chronic diseases; in 2015 the share was two-thirds. Most deaths in rich countries follow years of uneven deterioration. Roughly two-thirds happen in a hospital or nursing home. They often come after a crescendo of desperate treatment. Nearly a third of Americans who die after 65 will have spent time in an intensive-care unit in their final three months of life. Almost a fifth undergo surgery in their last month.
Such zealous intervention can be agonising for all concerned (see article). Cancer patients who die in hospital typically experience more pain, stress and depression than similar patients who die in a hospice or at home. Their families are more likely to argue with doctors and each other, to suffer from post-traumatic stress disorder and to feel prolonged grief.
What matters
Most important, these medicalised deaths do not seem to be what people want. Polls, including one carried out in four large countries by the Kaiser Family Foundation, an American think-tank, and The Economist, find that most people in good health hope that, when the time comes, they will die at home. And few, when asked about their hopes for their final days, say that their priority is to live as long as possible. Rather, they want to die free from pain, at peace, and surrounded by loved ones for whom they are not a burden.
Some deaths are unavoidably miserable. Not everyone will be in a condition to toast death’s imminence with champagne, as Anton Chekhov did. What people say they will want while they are well may change as the end nears (one reason why doctors are sceptical about the instructions set out in “living wills”). Dying at home is less appealing if all the medical kit is at the hospital. A treatment that is unbearable in the imagination can seem like the lesser of two evils when the alternative is death. Some patients will want to fight until all hope is lost.
But too often patients receive drastic treatment in spite of their dying wishes—by default, when doctors do “everything possible”, as they have been trained to, without talking through people’s preferences or ensuring that the prognosis is clearly understood. Just a third of American patients with terminal cancer are asked about their goals at the end of life, for example whether they wish to attend a special event, such as a grandchild’s wedding, even if that means leaving hospital and risking an earlier death. In many other countries, the share is even lower. Most oncologists, who see a lot of dying patients, say that they have never been taught how to talk to them.
This newspaper has called for the legalisation of doctor-assisted dying, so that mentally fit, terminally ill patients can be helped to end their lives if that is their wish. But the right to die is just one part of better care at the end of life. The evidence suggests that most people want this option, but that few would, in the end, choose to exercise it. To give people the death they say they want, medicine should take some simple steps.
More palliative care is needed. This neglected branch of medicine deals with the relief of pain and other symptoms, such as breathlessness, as well as counselling for the terminally ill. Until recently it was often dismissed as barely medicine at all: mere tea and sympathy when all hope has gone. Even in Britain, where the hospice movement began, access to palliative care is patchy. Recent studies have shown how wrongheaded that is. Providing it earlier in the course of advanced cancer alongside the usual treatments turns out not only to reduce suffering, but to prolong life, too.
Most doctors enter medicine to help people delay death, not to talk about its inevitability. But talk they must. A good start would be the wider use of the “Serious Illness Conversation Guide” drawn up by Atul Gawande, a surgeon and author. It is a short questionnaire designed to find out what terminally ill patients know about their condition and to understand what their goals are as the end nears. Early research suggests it encourages more, earlier conversations and reduces suffering.
These changes should be part of a broad shift in the way health-care systems deal with serious illness. Much care for the chronically ill needs to move out of hospitals altogether. That would mean some health-care funding being diverted to social support. The financial incentives for doctors and hospitals need to change, too. They are typically paid by insurers and governments to do things to patients, not to try to prevent disease or to make patients comfortable. Medicare, America’s public health scheme for the over-65s, has recently started paying doctors for in-depth conversations with terminally ill patients; other national health-care systems, and insurers, should follow. Cost is not an obstacle, since informed, engaged patients will be less likely to want pointless procedures. Fewer doctors may be sued, as poor communication is a common theme in malpractice claims.
One last thing before I go
Most people feel dread when they contemplate their mortality. As death has been hidden away in hospitals and nursing homes, it has become less familiar and harder to talk about. Politicians are scared to bring up end-of-life care in case they are accused of setting up “death panels”. But honest and open conversations with the dying should be as much a part of modern medicine as prescribing drugs or fixing broken bones. A better death means a better life, right until the end.
