Communications skills training in medicine is patchy, undervalued and not a clinical imperative – but 90% of doctors say it should be mandatory
‘Promoting better communication can signal to every doctor that the difficult skill of really listening to patients is one that can be learned in the same way as suturing a wound.’
The new patient is an elderly, diabetic lady whose heart has been teetering on the edge of failure for the past two years. She likes saying that her husband’s death broke her heart – it might have been so but at age 80, diabetes, uncontrolled hypertension and a series of heart attacks have also taken their toll. The last little while has been particularly eventful, with practically a hospital admission each month despite maximal therapy.
She sees a different physician every time to tackle her immediate problem – fluid overload on one visit, diuretic-induced dehydration the next; sky high sugars one month, dangerously low ones the next. There are short-term solutions but no overarching intent of management. Everyone, including the patient, simply skids from one disaster to the next. She looks defeated and miserable. This time, her exhausted son pulls me aside and says, “I know you are the expert, but am I alone in thinking that treatment is futile?”
He was being sensible, not cruel, as he feared. He was right that treatment was futile and what was missing was a narrative of his mother’s long illness that included death as an end point. Avoiding even the mention of mortality, we were doing the patient, her family and ourselves a disservice.
His words brought home two truths. First, that patients are entitled to more thorough explanations and better conversations about their health. Second, that we are seeing an emerging theme in medicine, where patients and families are seeking to define the boundaries of care when doctors either don’t or won’t.
In fact, the timeless business of dying has never had a higher profile, which is why the results of a recent survey by the Royal Australasian College of Physicians make for sobering reading.
The RACP end of life working party, of which I was a member, surveyed more than 1,500 physicians to identify their knowledge and practice of advance care planning and end of life care. Unsurprisingly, the majority reported routinely caring for patients who were likely to die within 12 months. On a weekly basis, one third of doctors observed provision of treatments inconsistent with known patient wishes and one-third observed treatment with little chance of benefit.
And while doctors overwhelmingly agreed that discussing end of life care was important, only a minority actually translated the intention into action. Barriers included a lack of time but just under half of the physicians felt insufficiently trained to undertake what is easily one of the most consequential conversations in the doctor-patient relationship. As a result, a dismal 17% of physicians expressed confidence in knowing the end of life preferences of their patients.
More than any other group, apart from general practitioners, physicians are expected to conduct difficult and sensitive conversations with chronically ill patients to define goals, and hence, boundaries, of care. A surgeon’s adroitness with the scalpel is best paired with the wider perspective of a physician who deliberates whether the patient will survive the operation. A tricky biopsy is within the radiologist’s reach but it’s the physician who asks whether it’s the right thing to do. This is not to diminish one speciality or elevate another but merely to acknowledge that our combined skills are necessary to provide appropriate and judicious healthcare.
When it comes to sustained communication with hospitalised patients about complex and chronic illness and helping them navigate the end of life, the burden on physicians has always been higher, which is why it’s a worry when as a group, they express uncertainty about their ability to provide this core component of care.
At the end of life, physicians are typically the doctors expected to explore your deepest longings and regrets, your strongest convictions and worst fears. In between, they deliberate resuscitation status, stop antibiotics, encourage palliation and provide counsel to the frazzled resident who says, “He is dying but the family wants everything done. How should I respond?”
No matter how prepared one is for the end of life, for most of us there is accompanying consternation, grief and anxiety. One might reasonably expect a physician to be the custodian of good health but also the guarantor of comfort and dignity in death. It’s clear that physicians aspire to be that doctor but confess to needing help. In the survey, a staggering 90% of physicians thought that communication skills training should be mandatory.
It isn’t, you ask. No, and it has never been. Such training in medicine, especially when it pertains to end of life care, is patchy, undervalued and considered an optional extra rather than a clinical imperative. In an era where we have mapped the human genome and talk about cancer moonshots we have consistently failed to provide not just physicians, but all doctors, with the tools to be effective communicators.
It’s often feared that in discussing mortality a doctor will extinguish hope – and there is indeed a tension between maintaining hope and telling the truth – but patients tell us they value honesty and doctors know it’s the right thing to do.
Becoming a tactful, sensitive and honest communicator is a lifelong process but it’s important enough that it shouldn’t be left to chance. But this is exactly what medical schools and hospitals largely do. And then we lament that despite all the advances in medicine, doctor-patient communication remains a fraught problem that underpins a significant majority of healthcare complaints.
Hospitals hate removing doctors from the floor because it costs money. Many are dubious that communications training can alter a doctor’s fundamental approach to patients, so they end up dealing reactively with problems.
But promoting better communication can influence organisational culture by signalling to every doctor that the difficult skill of really listening to patients is one that can be learned in the same way as suturing a wound or interpreting an ECG.
Doctor-patient communication has long been viewed as an indulgence that comes at the cost of service delivery. Fire training is mandatory as is training in cultural sensitivity. It is mandatory to know how to resuscitate a patient but not how to broach end of life care.
Patients are increasingly taking charge of their needs and concerns at the end of life and physicians will be forced to listen and respond accordingly. It’s hard to find nine out of 10 doctors agreeing over anything. If they are clamouring to become better communicators, it’s time we took note.
The influx of for-profit companies into the hospice field has benefited patients, advocates say, because the commercial companies made big investments in technology, focused on efficiency and made care more accessible.
But a Washington Post analysis of hundreds of thousands of U.S. hospice records indicates that, as those companies transformed a movement once dominated by community and religious organizations into a $17 billion industry, patient care suffered along the way.
On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.
The typical for-profit hospice:
Spends less on nursing per patient.
Is less likely to have sent a nurse to a patient’s home in the last days of life.
Is less likely to provide more intense levels of care for patients undergoing a crisis in their symptoms.
Has a higher percentage of patients who drop out of hospice care before dying. High rates of dropout are often viewed as a sign that patients were pushed out of hospice when their care grew expensive, left dissatisfied or were enrolled for hospice even though they were not close to death.
The quality of individual hospices varies widely. In some cases, for-profit hospices provide service at levels comparable to nonprofits, according to the review. But the data analysis, based on hundreds of thousands of Medicare patient and hospice records from 2013, shows that the gap between the for-profits as a whole and nonprofits is striking and consistent, regardless of hospice size.
Hospice profits vs. quality care
“Unfortunately, a lot of people have come into the business for the wrong reasons,” said Michael Girard, who with his wife Deb owns the Circle of Life for-profit hospice in Reno, Nev. “A lot of the problems we have in hospice today have happened with the entry of what I call the ‘vulture capitalists.’ ”
About half of Americans of retirement age will employ a hospice service before death, but public information about the agencies is meager, and many consumers are unaware whether a hospice operates as a nonprofit or for-profit.
The federal government has been trying — for years — to develop a way to measure and report hospice quality, but the effort has lagged behind other health-care industries. The Washington Post has published an online hospice guide that provides detailed information on more than 3,000 hospices.
The findings on for-profit hospices come amid repeated complaints within the industry that pressure to cut costs, combined with sparse government oversight, has led some companies to focus on the bottom line to the detriment of patients.
Hospice operators have an economic incentive to provide less care because they get paid a flat daily fee from Medicare for each of their patients. That means that the fewer services they provide, the wider their profit margin.
Industry advocates warned against using the findings to rule out care from a for-profit hospice.
“There are many, many factors in making a decision about what hospice to choose,” said Theresa M. Forster, vice president of the National Association for Home Care & Hospice, which represents for-profit and nonprofit hospices. “National trends may not apply at the local level. The key issues are the hospice’s ability to provide good end-of-life care.”
Through a spokesman, the National Hospice and Palliative Care Organization, another industry group, declined to comment on the findings.
Dave Williams, the chief financial officer of Chemed, which owns the largest U.S. hospice chain, said that for-profits offer several advantages for patients: They can more easily raise money for investments in equipment and expansion; they can achieve a size that offers them economies of scale; and, pushed by investors, they are encouraged to be more efficient.
He emphasized that size and scale matter because a large hospice can afford to lose money on some patients who may need extraordinary care.
“For large hospices that have been around a long time, the quality of care is going to be the same, whether they are for-profit or nonprofit,” Williams said. “The only way you can compete for patients and referrals over a long period of time is to provide the best possible care.”
***
The rise in hospice usage — today roughly half of older Americans who die have received some hospice care — has created a boom in the industry. In 2012, Medicare spent more than $15 billion on hospice care, which offers terminally ill patients treatment that focuses on providing comfort rather than aggressive methods aimed at a cure.
The number of hospice firms has risen rapidly, and over the past decade the growth has come almost entirely from new for-profit operations. Between 2000 and 2012, the number of for-profit hospices tripled to 2,196, according to federal figures, compared with about 1,500 nonprofit hospices, including those run by local governments.
The industry growth has been accompanied by remarkable turbulence, too. Between 1999 and 2009, more than 40 percent of hospices experienced one or more changes in ownership, according to researchers.
The expansion has been driven in large part by investors, including private equity firms, hedge funds and entrepreneurs. More than a dozen private equity firms have invested in businesses that provide hospice care, including giants such as The Carlyle Group, Kohlberg & Company, Summit Partners and GTCR.
“Hospice [mergers and acquisitions] market is red hot (peak valuation levels),” according to a presentation by financial analysts at Cain Brothers last year, which cited, among other things, the favorable U.S. demographics — more old people.
“Hospice continues to be of robust interest to Wall Street,” said Carsten Beith, a managing director at Cain Brothers.
He said the influx of private equity money has allowed the industry to expand and to fund investments in technology. The demands of investors have also pushed hospices to provide good care at lower costs and a hospice that spends less on nursing is not necessarily providing less care, he said.
“An operating model that is more efficient doesn’t translate into patient care deficiencies,” Beith said.
But some in the industry — often those in the traditional nonprofit hospices — have questioned whether the goals of a for-profit company and a dying patient are easily aligned.
“If you think as a businessman and you want to make money, you will cut and cut and cut,” said Helen Zebarth, who cofounded the nonprofit Blue Ridge Hospice in Winchester, Va., in 1979.
A former cardiac nurse, Zebarth decided to create a hospice after visiting the famed St. Christopher’s hospice in London in the mid-’70s.
Back in Winchester, she and colleagues operated the fledgling operation on a shoestring budget out of a hospital basement. At the time, hospice services had to be paid for by donations because insurance and Medicare didn’t cover it.
“It was free for everyone,” she said. “And the community supported it.”
She credits the beginning of Medicare and insurance coverage with allowing far more people in the United States to receive hospice services.
But it also turned hospice into a big business, which operates side-by-side with the visionaries remaining from the movement’s early days.
Today, the amount the Blue Ridge Hospice spends on nursing per patient is more than 50 percent higher than the state average. It offers an array of extra services, including music therapy. It accepts patients with no insurance coverage. It also built its own inpatient unit.
It pays for the extras with donations from the community and a string of thrift shops it operates.
“We really want to take care of people — that’s our goal,” Zebarth said. “That’s where we are focused.”
***
The debate over the role of for-profit companies has come up before in health care, most often with hospitals. Within that field, some researchers have found generally negligible differences between the care provided by for-profits and nonprofits.
“When simple measures of quality are used — such as mortality — we have not seen differences between the quality of for-profit and nonprofit hospitals,” said Frank Sloan, a Duke University health and economics professor.
Where the two vary, he said, is in business practices, with for-profit hospital chains more aggressively marketing other services to patients.
By contrast, significant differences appear to distinguish for-profit and nonprofit hospices.
The Post analysis is based on the 2013 cost reports and other billing data that hospices are obliged to file if they accept Medicare patients. Medicare pays for the vast majority of hospice care in the United States.
While they are not audited, the reports are supposed to reflect what the hospice spends each year in caring for patients.
The key findings:
Nonprofit hospices typically spent about $36 a day per patient on nursing visits; for-profit hospices spent $30 per day, or 17 percent less. The gap between for-profits and nonprofits remains whether the hospices are old or new.
Nonprofit hospices are much more likely to provide the more intense services — continuous nursing and inpatient care — required by patients whose symptoms are difficult to control. Nonprofits offered about 10 times as much of this per patient-day as did for-profits.
While hospices of both kinds usually dispatch a nurse to see a patient at some point during the last two days of life, for-profit hospices are more likely to fail in this regard, according to the analysis. A typical patient at a for-profit hospice is 22 percent less likely to have been visited by a nurse during this window than a patient at a nonprofit hospice, the numbers show, a sign that for-profit hospices may be less responsive during this critical time.
Patients at for-profit hospices are much more likely to drop out of hospice care than patients at nonprofit hospices.
The proportion of patients leaving a for-profit hospice is typically 22 percent, while it is only 14 percent at nonprofits.
The rate at which patients leave a hospice alive is a closely watched measure of quality.
“An extraordinarily high live discharge rate is indicative of financial motivations driving a hospice rather than patient care,” said Rich Chesney, chief executive of Healthcare Market Resources, a market research company that provided 2012 live discharge rates to the Post. (For its analysis, the Post obtained current data on discharge rates from the federal government.)
Patients may be leaving such hospices because “patients are dissatisfied with hospice or didn’t understand what they were getting into in the first place — that is, the hospice failed in the admissions process.”
The gap between for-profits and nonprofits was generally consistent even when geography, age of the hospice and diagnoses were taken into account. Older hospices of both kinds — for-profit and nonprofit — appeared to perform better than new hospices, according to the statistics.
Some previous academic studies have found other differences between for-profits and nonprofits.
Elizabeth Bradley, a Yale health policy professor, has conducted several such studies and found that for-profit hospices appear to offer less for patients: that nursing staffs at for-profit hospices had a smaller proportion of registered nurses; that patients at for-profit hospices received a narrower range of services; and that for-profit hospices were more likely to restrict enrollment of patients with potentially high-cost care.
Bradley notes that in at least one respect, for-profits do better than nonprofits: she and her colleagues found that for-profits are more likely to engage in outreach to low-income communities.
“I’m delighted that the for-profit hospices are expanding access by reaching low-income and minority communities,” Bradley said. “But someone needs to be watching to make sure that their strategies for maximizing their returns don’t end up compromising the quality of care.”
***
The differences between for-profits and nonprofits even show up in what kinds of pain relief are available.
Take, for example, a specific cancer treatment known as palliative radiation.
While the treatment is not intended to cure a patient, it can shrink tumors and ease pain. It is, however, expensive to provide and hospices often lose money when they do so — in other words, it cuts into profits.
Research has shown that nonprofit hospices are much more likely to offer the treatment to patients. The odds that a nonprofit hospice uses palliative radiotherapy are 2.5 times greater than the rate for a for-profit hospice, according to the 2009 research from the University of Minnesota. The Post analysis also found such differences.
Geoff Coleman, chief medical officer at Montgomery Hospice, a nonprofit group, said that he sometimes recommends palliative radiation at times. But when he worked at a for-profit hospice, the staff was not allowed to give patients palliative radiation, he said.
“Essentially I was told, ‘We’re not going to do those kinds of therapies,’ ” he said, a decision he said he disagreed with. “The administrators were adamant that it was not in their purview. Sometimes, the smaller hospices just don’t have the funds.”
Anna Williams, 82, last year received palliative radiation as a patient of Montgomery Hospice after her oncologist recommended it.
Her daughter said that because Williams’s condition was deteriorating rapidly, it was hard to tell what effect it had on her mother, a former nurse she described as a “gentle spirit.”
“We knew it wasn’t going to save her,” said her daughter, Edie Gordon. “But the doctor said the radiation could bring her some relief. We just wanted to make her comfortable. It was something hopeful.”
Montgomery Hospice is better able to afford such care because, like other nonprofits, it receives a large portion of its operating budget from donations. About 11 percent of its $22 million budget comes from donations every year.
Given the budget pressures facing hospices, oversight is critical to making sure that financial demands do not trump patient care.
But regulatory scrutiny of hospices has lagged behind those of other health-care institutions, though Congress has recently called for more frequent inspections. And without as much oversight, hospice operators can operate in ways that benefit shareholders more than patients.
“With hospitals, whatever financial motivations to provide less or inappropriate care is more likely to be blunted by regulation and oversight and quality measures,” said Harold Miller, president of the Center for Healthcare Quality and Payment Reform. “We’re not there yet with hospices.”
In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.
“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.
A new study reveals a sobering truth: Doctors die just like the rest of us.
“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”
The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly longer in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.
In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.
But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.
“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.
This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.
Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.
“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” wrote Craig C. Earle in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”
That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.
But Matlock and Fischer think that their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.
“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”
There are definite limits to the study: It could not control for differences in education or income among people in the sample. The doctors who died were mostly white men.
But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing at home, it’s much harder to write a prescription.
Lonny Shavelson is consulting with doctors who have questions about California’s “End of Life Option Act.” He will also see patients after the law takes effect next week.
Few people have the unusual set of professional experiences that Lonny Shavelson does. He worked as an emergency room physician in Berkeley for years — while also working as a journalist. He has written several books and takes hauntingly beautiful photographs.
Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.
Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.
He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.
Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.
Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.
He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.
Now he’ll add another specialty. Just as California’s End of Life Option Act, a law legalizing physician aid-in-dying for people who are terminally ill, is set to take effect next week, Shavelson has become a consultant aimed at answering questions from physicians and patients about the practice — even becoming a physician to terminally ill patients seeking to end their lives.
Oregon was the first state to approve the practice, and in 1996 the law was held up in court. I turned to Shavelson as he had published “A Chosen Death,” a moving book following five terminally ill people over two years as they determined whether to amass drugs on their own and end their lives at a time of their choosing. He was present at the death of all of them.
He followed the issue of assisted suicide closely for several years more, but ultimately moved on to other major projects — among them a book about addiction and a documentary about people who identify as neither male nor female.
The wall of Lonny Shavelson’s office, lined with covers of the books he has written.
Shavelson decided he had to act, although he feels “quite guilty” about having been away from the issue while others pushed it forward.
“Can I just sit back and watch?” Shavelson told me from his cottage office in his backyard in Berkeley. “This is really an amazing opportunity to be part of establishing policy and initiating something in medicine. This is a major change … [that] very, very few people know anything about and how to do it.”
His website, Bay Area End of Life Options, went up in April, and he’s outlined the law at “grand rounds” at several Bay Area hospitals this spring. His practice will be focused on consulting not only with physicians whose patients request aid-in-dying, but also with patients themselves, including offering care to patients who choose him as their “attending End-of-Life physician,” as he indicates on his site.
Shavelson is adamant that this is “something that has to be done right.” To him, that means starting every patient encounter with a one-word question: “Why?”
“In fact, it’s the only initial approach that I think is acceptable. If somebody calls me and says, ‘I want to take the medication,’ my first question is, why? Let me talk to you about all the various alternatives and all the ways that we can think about this,” he predicts he will say.
Shavelson worries that patients may seek aid-in-dying because they are in pain, so first, he would like all his patients to be enrolled in hospice care.
“This can only work when you’re sure that the patients have been given the best end-of-life care, which to me is most guaranteed by being a part of hospice or at least having a good palliative care physician. Then this is a rational decision. If you’re doing it otherwise, it’s because of lack of good care.”
California is the fifth state to legalize aid-in-dying, joining Oregon, Washington, Vermont and Montana. The option is very rarely used. For example, in 2014 in Oregon, 155 lethal prescriptions were written under the state’s law, and 105 people ultimately took the medicine and died, a death rate under this method of less than 0.5 percent.
Under the law, two doctors must agree that a mentally competent patient has six months or less to live. One of the patient-doctor meetings must be private, between only the patient and the physician, to ensure the patient is acting independently. Patients must be able to swallow the medication themselves and must state, in writing, within 48 hours before taking the medication, that they will do so.
Shavelson says he has been surprised by the lack of understanding he hears from some health care providers about the law. One person insisted the law was not taking effect this year; another asked how the law would benefit his patients with Alzheimer’s disease. To be clear, the law takes effect next week, and patients with dementia cannot access the law because they are not mentally competent.
The law does not mandate participation by any health care providers. Many physicians are “queasy” with the new law, Shavelson says he’s hearing, and are unwilling to prescribe to patients who request the lethal medication — even though they tell him they think the law is the right thing to do.
Renee Sahm, one of five terminally ill people followed by Lonny Shavelson in his 1995 book “A Chosen Death.”
“My response to that is as health care providers, you might have been uncomfortable the first time you drew blood. You might have been uncomfortable the first time you took out somebody’s gall bladder,” he says. “If it’s a medical procedure you believe in and you believe it’s the patient’s right, then it’s your obligation to learn how to do it — and do it correctly.”
Shavelson said he predicts that many physicians who are initially reluctant to provide this option to their patients may become more comfortable after the law goes into effect and they see how it works.
Burt Presberg, an East Bay psychiatrist who works specifically with cancer patients and their families, said a talk he attended by Shavelson sparked a conversation at his practice. Yet, in my own talk with him, he peppered his statements with “on the other hand,” as he clearly wrestled with his own comfort level of handling patient requests.
Presberg spoke of his concern that patients suffer from clinical depression at the end of life, sometimes feeling they are a burden to family members who could “really push for the end of life to happen a little sooner than the patient themselves.” He spoke from his experience of successfully treating terminally ill patients with clinical depression.
“Depression is something that’s really undertreated,” Presberg said. “I often talk to people about the difference between normal sadness and normal grieving at the end of life.”
He said he believes Shavelson will be aware of treating depression, “but I do have concerns about other physicians,” he said. “On the other hand, I think it’s really good that this is an option.”
Shavelson says he’s already received a handful of calls from patients, but he’s mostly spent this time before the law takes effect talking to other physicians. He needs a consulting physician and a pharmacist that will accept prescriptions for the lethal dose of medicine.
Then he returns to the patient. “It’s important … that we’re moving forward,” he says. “It’s crucial that we do that because this is part of the rights of patient care to have a certain level of autonomy in how they die.”
To many of the doctors who feel “queasy” about moving to end a patient’s life, this type of care “isn’t so tangibly different to me,” Shavelson says, than other kinds of questions doctors address.
“I’m just one of those docs who sees dying as a process, and method of death is less important than making sure it’s a good death.”
Many GPs lack confidence when it comes to end of life care. Thinking back to my own family’s experiences, I explore the support available for doctors.
It was cold even for February and my headlights lit up sheets of rain as I pulled into our parking space. I was surprised to see my wife running towards me in the rear view mirror.
“I think you should come inside and sit down,” she said gently. I remember her stood there in her dressing gown and slippers. She was getting completely drenched. But that might be the kind of detail you misremember when your brain is sent into a sudden spin.
“…there’s been some bad news, your Mum rang, your Dad…..his oesophagus, cancer, blah blah blah………they don’t know, they don’t know, they don’t know. You need to call your mum…”
That “they don’t know” turned into more “they don’t know”. For 5–6 weeks, through endless appointments with specialists, scans, and doctor’s appointments. Eventually they did know. A consultant talked Dad and Mum through end of life care options.
But it was his GP who initially referred him after he’d had problems swallowing (he’d been a little sceptical that there was a problem). It was his GP who acted as a day-to-day source of contact in the days, weeks and months ahead.
And it was the same GP who Mum and Dad would visit between hospital appointments — to check in with, for prescriptions to help with pain or sleeping and, more than anything, for someone to talk to.
Challenging conversations
“It can feel overwhelming that the needs and trust of the patient and their carers are solely placed on you. Particularly when you’re working in an out-of-hours setting, or on-call within the practice. You can feel very isolated,” says Dr Elise Long, a salaried GP working in Cardiff.
“I’ve personally felt like I need to further my clinical knowledge of symptom management and my communication skills.”
Elise isn’t alone.
Many GPs find it difficult to discuss death and dying with patients. Research shows that doctors sometimes don’t initiate end of life care conversations and many say they find it more comfortable when the subject is brought up by patients. Clearly, it is a distressing topic.
“There’s bound to be a lack of confidence in some quarters,” says Marie Curie Medical Director, Professor Bill Noble. “It’s never straightforward. So much depends on your experience and training background.”
Zoe Hutchinson qualified as a GP three years ago and now works in Littleport, Cambridgeshire. It’s a remote location, where she says many patients can feel isolated — particularly after being diagnosed with a terminal illness.
She says her undergraduate medical training inspired a passion for palliative care: “It’s an important issue. All our patients face the prospect of needing end of life care at some point”.
Dr Hutchinson embraces her position as the central point of contact for her rural patients. She talks about the time she spends liaising with district nurses and others involved in end of life care, visiting remote patients, identifying the need for ‘just in case’ medicines, and establishing the needs and wishes of the patient and their family.
“But really, having an open conversation with the patient and their family is the most important thing. To do that you need to be able to understand when a patient is ready to have conversations about end of life care. It’s hard. One of my patients suffers from anxiety. I can tell they don’t want to talk about death and dying yet. It’s about really getting to know them,” she says.
I ask several other GPs about what they think makes for good end of life care. They all agree: communication. Specifically: communication based on developing genuine human relationships with patients.
A recent video collaboration between the GMC and National Council for Palliative Care explores the same issue (see it here). Patients and family members talk about the difference it makes to be treated like individuals. GPs talk about the need for us all to talk about death more openly. But when distressing conversations need to be had, it’s important they happen in a planned way, at the right time, in private, and with relevant family members or carers present.
Clarity and communication
After Dad’s diagnosis, I’d call my parents on a daily basis when I couldn’t visit. We were all grasping at that stage: for information, for certainty, for hope. I could sense their frustration as they tried to remember what they’d been told by the consultant or GP.
Often the details seemed jumbled or confused. It seemed to me like things hadn’t always been explained particularly well. When I mentioned this to Mum recently, she said the GP had been very good, but it seemed he was hearing updates about Dad’s condition for the first time from them.
When you feel all at sea, clear communication is like a lifebelt. Asking patients to repeat information to make sure they’ve understood it is one technique GPs use. But there’s another question: has information about the patient been shared as effectively as possible between people involved in caring for the patient?
It’s a problem that’s being tackled through electronic tools like EPaCCs(electronic palliative care coordination systems), with which healthcare professionals involved in palliative care can share information more effectively.
This gives everyone involved access to timely information. It also helps identify those patients who are approaching the end of their life, so important conversations can take place and the wishes of patients and families considered. And it ensures patients can be referred to services at the right time.
Gold plating end of life care
But what else can be done to improve the quality of support GPs can offer? Everyone I spoke to talked about the need for more training with a palliative care focus.
In 2013, the Royal College of General Practitioners and Marie Curie formed a partnership to improve the end of life care offered by GPs. Since 2015, the partnership has produced a series of one-day end of life masterclasses for GPs, run by experts across the UK. More classes are planned for later in 2016.
“When you ask GPs what they need to know about palliative care they say they need: confidence about communication, knowledge about symptom control and good relationships with local nursing service,” says Professor Noble. The masterclasses there cover the issues GPs themselves have identified as things they need to know more about. Also covered are medical-legal issues and general changes to policy and practice.
“GP training gives you a good base to start from. The problem is you need to know something about everything,” says Dr Michael Brookes, an RCGP/Marie Curie Clinical Fellow who helped run several of the sessions. “It’s impossible to train for every eventuality. We need to give people the skills to deal with end of life effectively. That also means fostering a hunger for self-improvement.”
Another outcome of the partnership has been the Palliative Care End of Life Toolkit, which supports patients and GPs at the end of life. “End of life care is one of the biggest things you can do to make a difference. You can see the effect being able to support a ‘good death’ has on everyone,” says Dr Brookes.
Both Dr Long and Dr Hutchinson attended our masterclasses. “It was an amazing opportunity to meet and hear from palliative care leaders. And amazingly, given the calibre of speakers, it was completely free,” says Long.
“I’d always been interested in end of life care during my GP training,” says Dr Hutchinson. “I’m already putting tips on prescribing ‘just in case’ medicines into practice, and the advice on difficult ‘bad news’ conversations was invaluable. Training has improved. But the masterclasses help to gold plate it.”
What next?
When I ask Professor Noble what he thinks needs to be our next focus, his answer is immediate: 24/7 end of life care. More needs to be done to make sure high-quality 24/7 end of life care is available to patients within communities. GPs are a central point of contact for patients who’ve been affected by terminal illness, and their families. They play a crucial role in delivering this service effectively.
“At the moment GPs very rarely provide out-of-hours care to their own patients. It’s sometimes handed over to emergency call systems. And that’s problematic,” says Professor Noble. “Continuity matters more in end of life than in any other area. Patients shouldn’t have to go over the same ground again and again.”
Six months after his initial diagnosis, Dad was rushed into hospital for what would be the final time. Mum remembers the GP being limited in his ability to do all that much during the previous six months. He was more a point of contact — someone to talk to when things got tough. But Dad liked him. That was important
After Dad died, the GP rang my mum to offer his condolences. “Any time you want to come in and talk, we’re here for you,” she remembers him saying. It meant a lot. It still does.
To find out more about how Marie Curie provide care and support at the end of life, visit their website.
Everyone should ask themselves, “How do I want to die?”
BY MARK FOURRE
As doctors, we are trained to solve problems.
If an arm is broken, we set it. If a heart valve is leaking, we replace it. If infection strikes, we do our best to cure it. There is real satisfaction when, as physicians, we make an accurate diagnosis and deploy an effective treatment.
Perhaps that’s why, when there is no problem to be solved, we don’t always do our best work. Death, after all, is not a solvable problem. All our patients will die. We can’t fix that. And too often, as a result, we don’t do all we should, or could to help our patients accept the inevitable.
Physicians are not alone, of course. Our society generally does a poor job of seeing death as a natural outcome of life. Many of us maintain the myth of our own invincibility long past our 20s. And where death was once something that typically happened at home in the presence of family and friends, it more often happens today in a hospital or nursing home.
When confronted with the question, “How do you want to die?” many of us might answer “I don’t.” But this question, the kind of death we want for ourselves, lives with us every day of our lives. It is true that extending life is a desirable and legitimate goal of our healthcare system, but the quality of our lives — and of our deaths — have a place as well.
None of us can solve death as if it’s a problem, but we can all have goals for the end of our lives. And it is that change, from problem-solving to goal-setting, which can lead us as physicians to do better by our patients when it comes to end-of-life care.
Of course, better end-of life-care, like better health overall, is not just the doctor’s responsibility. Just as everyone needs to do their part in the work of extending and improving life by not smoking, exercising and eating a healthy diet, so, too, must our patients take an active and informed role in good end-of-life planning.
The rewards can be a bit counter-intuitive. Research shows that among those who are given a terminal diagnosis, having an end-of-life plan that includes goal-directed care like hospice leads to care that is not only less costly, but patients on average are happier and actually live longer than those who exhaust every treatment option.
The good news is members of the medical community are beginning to embrace these changes. Across the MaineHealth system, for instance, events were planned around National Healthcare Decisions Day on April 16, organized to raise awareness of better end-of-life planning. And every day the conversation is growing among doctors, nurses and other practitioners about the need to talk to our patients about the benefits of creating advanced directives for healthcare and thoughtful end-of-life options such as hospice care.
For all this good work, though, the most important lessons I learned about death and dying didn’t come as part of my medical training. They came from my parents.
During my internship year, my dad as a relatively young man in his late 50s, had to struggle with the decision of whether to undergo chemotherapy for advanced lung cancer. He decided that his goal was not to pursue more days alive, but rather, to live the rest of his life meaningfully.
He chose to forgo chemotherapy and identified the goals he wanted to meet before dying. He completed the design of a church he was working on. He deliberately and intimately connected with family and friends. He put his financial affairs in order. He even planned his entire visitation service and funeral, including designing the memorial card handed out at his wake.
Importantly, he didn’t do this alone. He had to talk with a lot of people. Everyone important to him knew the plan. His family, his doctor, his business associates and his close friends all understood what to expect. And we all knew that my dad was living the way he always had, in a thoughtful and loving manner.
And, he spent time conversing with his God. “I don’t have a problem with dying,” he would say. “I’m just not sure I agree with the timing.”
My father was able to have the kind of death he wanted because he thought about it beforehand and took steps to insure that he died the way he had always lived.
Years later, my mother died from Parkinson’s disease. I am grateful to this day for the afternoon she spent with me not long after her diagnosis putting her thoughts down into a medical directive that would guide my family through the end stages of that illness. It was a natural and rewarding conversation in part because we didn’t set out to produce a perfect document, just one that would work for my mom and our family.
As a doctor, I have seen the alternatives to these thoughtful deaths.
I remember the first time I responded to a code in the hospital. I was a young medical student. A “code” or “code blue” is called over the intercom system of a hospital when a patient has had an unexpected cardiac arrest.
Amongst all the commotion, the thing that stood out the most to me was the patient. She was very frail, very old — and lifeless. The whole scene struck me as too much. It felt invasive and out of place.
Despite the apparent futility of the efforts, the “code” continued for what seemed to be a very long time. As is the case with the vast majority of “code blues,” the effort was not successful.
There is a reason why 65 percent of older physicians have an advanced directive, compared to 20 percent of the population generally. We know the limits of modern medicine. As a result, we know how we would like to die.
As physicians we must resolve to build end-of-life conversations into the care of all our patients. The time to start the conversation is long before a terminal diagnosis. And as with smoking cessation, progress will depend not on one conversation but instead on an ongoing dialogue.
If you are a patient and your doctor hasn’t brought up end-of-life care, don’t be shy. Ask. The time to start is now, and it is a conversation that should include not only your doctor, but all those close to you.
As an integral and inevitable part of life, death is not a problem. But our failure to plan for it is. Let’s solve it, together.
Some cancer patients may turn down care that could ease their pain and improve their quality of life because they think this type of “palliative” treatment amounts to giving up and simply waiting to die, a small Canadian study suggests.
Even though the World Health Organization recommends early palliative care for patients living with any serious illness, negative attitudes among patients and family caregivers often lead them to reject this option, researchers note in the Canadian Medical Association Journal.
“Patients and caregivers in our study saw palliative care as being equated with death, loss of hope, dependency, and going into places you never get out of again,” said lead study author Dr. Camilla Zimmermann, head of the division of palliative care at the University Health Network in Toronto.
“This is in stark contrast with the actual definition of palliative care, which is interdisciplinary care that provides quality of life for patients with any serious illness and their families, and that is provided throughout the course of the illness rather than only at the end of life,” Zimmermann added by email.
Zimmermann and colleagues interviewed 48 cancer patients and 23 of their family caregivers in cases when life expectancy was six to 24 months.
The researchers randomly assigned 26 patients to receive palliative care in addition to standard cancer care, while another 22 patients had only standard care.
Twenty-two patients in the palliative care group and 20 in the control group were receiving chemotherapy.
Over four months, patients in the palliative care group had at least monthly palliative care clinic visits, while those in the standard care group didn’t receive any formal interventions. Caregivers could attend clinic visits for the palliative care participants, but they weren’t required to do so.
Patients were typically in their early to mid-sixties. Most were married and had at least some education beyond high school.
Most family caregivers were spouses, but a few were children or other relatives.
Initial perceptions of palliative care were similar in both groups – patients generally thought this was done only for the dying. While patients in both groups thought of palliative care as providing comfort, they also associated it with giving up on treatment.
Once some patients received palliative care, however, their thinking shifted. Some patients now saw this as a way to live life to the fullest despite the terminal diagnosis, while others suggested that doctors might have better luck renaming this as something other than “palliative care.”
Calling palliative care providers “pain specialists” because they treat discomfort and focus on quality of life would make this sound more appealing and less frightening, some patients said after getting this type of care.
But in the control group, without any experience with palliative care during the study, patients didn’t see the point of renaming it because they thought it would still carry the stigma of giving up and waiting to die.
“Palliative care should not be framed as a last resort option,” said Dr. Anthony Caprio, a geriatrician and hospice and palliative medicine physician at Carolinas HealthCare System in North Carolina.
“These ‘nothing left to do’ conversations often frame palliative care as a way to help people die comfortably, rather than an approach to care that allows them to live with the highest quality of life for as long as possible,” said Caprio, who wrote an editorial that was published with the study.
Using different language in discussions with patients can make a big difference, Caprio added.
“I often describe palliative care as an extra layer of support,” Caprio said. “Who wouldn’t want more support, especially during a difficult illness?”
No matter how prepared one is for the end of life, for most of us there is accompanying consternation, grief and anxiety. One might reasonably expect a physician to be the custodian of good health but also the guarantor of comfort and dignity in death. It’s clear that physicians aspire to be that doctor but confess to needing help. In the survey, a staggering 90% of physicians thought that communication skills training should be mandatory.
