The LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.
Bob DeMarce made a living as a funeral director, but he didn’t think much about his own mortality until he developed cancer. He soon learned it took more than being sick to prepare him for death.
DeMarce became one of hundreds of Minnesotans enrolled in a research program that prepares patients and families for the end of life. Conducted by Allina Health, the LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.
DeMarce already had plenty of doctors, care coordinators and rehab specialists to attend to his medical needs. LifeCourse gave him a “care guide” — a nonmedical counselor — who met with him and his family to help them set goals and provide support.
“Most people would hesitate to talk about this sort of thing,” said the 75-year-old DeMarce, who has had two bouts of lung cancer in addition to colon cancer. “With the different scares I had with cancer … We did want to get things straightened out.”
One goal of the program is to increase the number of patients with advance care directives, which research has shown can reduce the amount of unnecessary and often unwanted care at the end of life.
And the results were dramatic: Patients in the LifeCourse intervention group had fewer hospital inpatient days, fewer emergency room visits and less intensive care, compared with a control group that was tracked but did not work with care guides. About 85 percent completed a living will, compared with 30 percent in the control group.
But the program also aims to improve the quality of life at a time when chronically ill patients and their families often feel overwhelmed.
“The model we chose was one that would be very personal,” said Dr. Eric Anderson, a palliative care physician at Allina’s United Hospital and one of the LifeCourse leaders. “There is an intimate connection between talking about what matters most and having effective advanced directives.”
In some ways, the program turns the patient’s focus away from the end of life to the life that can be lived.
“People want to have meaning in their lives, that is more important than anything else,” said Anderson.
“The lived experience for these patients and for their families is simply better. In a number of ways they feel more holistically supported, less anxious and they are using services in a more rational and effective way.”
Minneapolis-based Allina is so encouraged by the program that it plans to develop it beyond the research phase and make it available to patients at eight Allina clinics by the end of this year. It is also talking with other organizations that might adopt the LifeCourse model.
“We’ve got such a large number of people who will be over the age of 65 who will face serious illness,” said Heather Britt, Allina’s director of applied research, who also worked on the project. “Systems like ours have to figure out what to do differently.”
Setting a course
LifeCourse began in 2012, targeting patients with heart failure, advanced cancers and dementia using Allina’s electronic medical record.
“We figured out who was sick enough with those diagnoses, and that took a fair amount of tweaking,” Anderson said.
Eventually, 450 patients were enrolled in the intervention group and about an equal number in a control group.
Care guides meet with patients and their families monthly.
“I am helping them identify what their goals would be and what resources that they might need,” said Judi Blomberg, an Allina care guide since 2013. A lawyer by training, Blomberg was drawn to a health care job because she wanted to help people dealing with crises and trauma.
“Feeling overwhelmed is something that happens when we hit those crisis points,” said Blomberg. “One of my jobs is to help people anticipate what is to come.”
Using a set of questionnaires and assessment tools, care guides help patients set a course to achieve what matters to them.
For some patients, it could be medical goals such as staying out of the nursing home, controlling blood sugar, walking without a cane or losing weight. But many patients also set goals outside the medical realm: doing volunteer work, spending more time with relatives or putting together photo albums.
Toes in the ocean
Bob DeMarce and his wife, Marilyn, who were among Blomberg’s first clients, decided their initial goal was to develop a living will.
“One thing that we were bringing to them was a framework where they can talk about difficult things together that had been hard for them to talk with each other about,” Blomberg said.
“It felt very natural,” said Marilyn DeMarce. “They made it not hard to sit down and have a conversation.”
“She kept us on point and made sure we got it done,” said Bob DeMarce, who does not want any extraordinary measures to prolong his life.
In addition to completing a living will, the DeMarces resumed traveling, a favorite pastime, last November with a trip to Palm Springs, Calif., including a side trip so Bob could stand in the ocean.
“That was big on my bucket list,” he said.
Although Bob DeMarce is now cancer-free, he did fall and break his femur about two years ago. The DeMarces were able to rely on their care guide for help.
“It really provides extra support. When you are in crisis you need as much help as you can [get],” said Marilyn DeMarce. “When you are living with this type of illness you know that at any moment your life could just change.”
“The interest they have shown in my health for whatever reason has been beneficial to me,” Bob DeMarce said. “It prepares you to live with being sick but it also helps you to get ready to die.”
When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.
People who die in the hospital undergo more intense tests and procedures than those who die anywhere else.
An analysis by Arcadia Healthcare Solutions also shows that spending on people who die in a hospital is about seven times that on people who die at home.
The work confirms with hard data what most doctors and policymakers already know: Hospital deaths are more expensive and intrusive than deaths at home, in hospice care, or even in nursing homes.
“This intensity of services in the hospital shows a lot of suffering that is not probably in the end going to offer people more quality of life and may not offer them more quantity of life either,” says Dr. Richard Parker, chief medical officer at Arcadia.
Arcadia analyzed all the Medicaid claims data for a private Medicaid insurance company in one Western state and detailed how many billable medical procedures each patient received and where. Patients in hospitals were billed for far more medical interventions in the last days of their lives than people who died in other settings. The company declined to name the state or company.
The study showed that 42 percent of patients died at home at a cost of about $4,760 for their last month of life, while 40 percent died in a hospital at a cost of $32,379. Dying in a nursing home was the second most expensive locale, inpatient hospice was third and an emergency room was fourth.
“In the end, everyone died. They all died,” Parker tells Shots. “If we look at this retroactively, retrospectively — and we could go back and ask people — I bet most of them would say I’d rather be home with my family.”
Parker says the cost of hospital deaths paid for by Medicare or private insurance are likely even higher because they pay doctors and hospitals more for their services.
Many studies have shown that people, when asked, say they’d prefer to die at home rather than in a hospital. However, those wishes aren’t always realized if a person hasn’t given clear instructions to a doctor or family member.
Parker says hospitals are designed to cure people who are ill rather than to allow people to die peacefully.
“The culture of American medicine today and for the last several decades is to keep treating patients regardless of the quality of life,” he says. “A lot of physicians have been reluctant to admit that the patient’s life is coming to an end.”
The picture is more complicated than the data show, says Dr. Lachlan Forrow, a professor of medicine and medical ethics at Harvard University.
Many patients move from home to hospice to hospitals and back during the last 30 days of life. And some may end up in the hospital because their pain or symptoms weren’t adequately controlled at home.
Still, he says, hospitals are just not good at caring for dying people.
“We do lots of very expensive things in hospitals to people in the last part of life who would rather be home, and we do those in part because in the hospital they get paid for,” he says.
It’s the only way to justify keeping in a hospital the people who need around the clock nursing care but can’t get it at home.
“If we really tried to make sure people at home could have what they needed at home, we could take better care of them, with less medical system-caused suffering, at lower cost, sometimes much lower cost,” he says.
Most 4-year-olds cannot grasp the concept of death. Most don’t have to, but Julianna Snow was forced to consider and reckon with her own mortality at that young age.
Julianna, of Washougal, Wash., was diagnosed with Charcot-Marie-Tooth Disease, which is one of the world’s most common inherited neurological disorders, according to the National Institutes of Health. It’s a progressive disease that damages the nerves affecting certain muscles. In most cases, it’s relegated to the arm and leg muscles, sometimes so mildly doctors don’t even find it upon examination. But there are many mutations of CMT, and symptoms range in severity.
Julianna’s case was one of the most severe.
The disease affected the muscles she needed for chewing and swallowing, then those needed for breathing. Her lungs would fill with mucus and cause pneumonia. When this happened, doctors would need to perform nasotracheal suctioning, an exceedingly painful procedure in which a tube is threaded through the nose and down the throat, past the gag reflex and into the lungs in order to remove dangerous mucus build-up.
Julianna despised it.
Most children scream and need to be restrained during the procedure, but Julianna was eventually too weak to do anything but cry, her nurse Diana Scolaro — who often performed the procedure — told CNN. And while most children can be sedated for the process, Julianna was too weak.
She remained conscious for each one, feeling every second of pain.
After each session, Scolaro would tell Julianna, “Rest now, baby. Maybe you can make it two hours before we have to do it again.”
Scolaro told CNN, “It’s not for the faint of heart to take what she took.”
Juliana’s condition continued to worsen. She eventually required a pressurized mask to pump oxygen into her lungs, which were too weak to do it themselves. She was fed through a tube inserted into her stomach. Her tiny body had grown too frail to fight off another bout of pneumonia, or even the common cold.
In October 2014, Dr. Sarah Green sat down with Julianna’s parents, neurologist Michelle Moon and former Air Force pilot Steve Snow, to have a difficult conversation. The next time Julianna got sick, she would likely die. If doctors managed to save her, her quality of life would almost certainly be poor.
It was a decision Moon and Snow could have made on their own, and they had — they were going to bring Julianna to the hospital if she got sick again.
But then they decided to ask Julianna.
Juilanna Snow.
As Moon explained on Anderson Cooper’s “AC360, “Julianna had to go through hundreds of rounds of nasotracheal suctioning. She knows exactly what that was. She was awake for every single one. I think she has a right. I think she has a say.”
So Moon sat her 4-year-old daughter down to have a series of the most heart-wrenching conversations a parent could imagine.
“Julianna, if you get sick again, do you want to go to the hospital again or stay home?” she asked her daughter in a conversation she blogged about on her personal blog and for the Mighty.
“Not the hospital,” the girl said.
In another conversation, Julianna asked whether her mother wanted her to get treatment. Moon asked what Julianna wanted.
“I hate NT. I hate the hospital,” she said.
“Right. So if you get sick again, you want to stay home,” her mom said. “But you know that probably means you will go to heaven, right?”
“Yes.”
“And it probably means that you will go to heaven by yourself, and Mommy will join you later.”
“But I won’t be alone,” Julianna replied.
“That’s right. You will not be alone.”
“Do some people go to heaven soon?” the 4-year-old asked.
“Yes. We just don’t know when we go to heaven,” her mom said. “Sometimes babies go to heaven. Sometimes really old people go to heaven.”
“Will Alex go to heaven with me?” Julianna asked, referring to her 6-year-old brother.
“Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone,” Moon told her. “Does that scare you?”
“No, heaven is good,” her daughter said. “But I don’t like dying.”
The two had many more conversations in this vein, Moon trying to ensure that, as much as possible, Julianna understood what dying means. Not only can most 4-year-olds not grasp the concept of death, most people can’t.
Still, a decision had to be made, and Julianna helped make one.
“I want to make it clear these are not Julianna’s decisions or choices,” Moon toldPeople. “They are Steve’s and my decisions, but we look to Julianna to guide us.”
Her parents respected her wishes.
“She made it clear that she doesn’t want to go through the hospital again,” Michelle told CNN. “So we had to let go of that plan because it was selfish.”
On Tuesday, Julianna died at 5 years old.
“Our sweet Julianna went to heaven today,” Moon wrote on the blog dedicated to her daughter. “I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together.”
Since Moon first posted on the Mighty, a blog about people with disabilities, and began her own blog, Julianna’s story has received national attention. CNN wrote a two-part series on the family, which was also featured on “AC360.” People magazine profiled the family. Even the Korean Broadcasting System traveled to Washington state to film Julianna for a Christmas Day documentary (below, but not in English).
As her story grew, so too did backlash in response to their decision.
“Your daughter sounds super smart but, please, don’t let her be anything like the decision-maker on this. I’m so grateful my parents heard my articulate little 4 year-old thoughts, factored them in, and didn’t confuse my strong verbal skills with an older emotional age,” wrote one commenter on the Mighty.
“The fact that she used leading questions does not sit well with me. As an attorney, I cannot even use those types of questions when cross examining. So, to present the questions in such a format induces the child in subtle prompts to answer in a particular way … furthermore, a four year old lacks the full capacity to decide their own” mortality, wrote another.
“I am so sorry for the lack of support you and your husband get from people who do not know you or young Julianna,” one wrote in response.
Even bioethicists weighed in.
New York University bioethics professor Arthur Caplan told CNN, “This doesn’t sit well with me. It makes me nervous. I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”
Others disagree.
“To say her experience is irrelevant doesn’t make any sense,” Chris Feudtner, director of the Department of Medical Ethics at the Children’s Hospital of Philadelphia said in response. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Karla Langlois, a hospice nurse who worked with Julianna, agreed.
“I think she’s very capable of having input into the end of her life,” Langlois toldPeople. “I don’t know that it’s appropriate for every child but in this scenario it’s very appropriate.”
Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now.
I will have more to say later. For now, this is what is in my heart.
Today, I just want the world to know that there was a girl named Julianna.
She was a bright light. An old and delightful soul.
She loved love, and “everyone except for bad guys.”
She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.
She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)
Her mind was “always going.” It took us to a beautiful world without limits.
Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.
She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.
Today, she is free. Our sweet Julianna is finally free.
Please do not forget her. She lived, she was real, and she mattered.
I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.
Please remember our precious girl: she was Julianna.
The dying process usually begins well before death actually occurs.
Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.
As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead.
As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.
There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.
The Journey Begins: One to Three Months Prior to Death
As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it.
They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets.
The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.
One to Two Weeks Prior to Death
Mental Changes
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.
The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there.
Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.
Physical Changes
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:
The body temperature lowers by a degree or more.
The blood pressure lowers.
The pulse becomes irregular and may slow down or speed up.
There is increased perspiration.
Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
Speaking decreases and eventually stops altogether.
Journey’s End: A Couple of Days to Hours Prior to Death
The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.
The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.
Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dyingduring this time.
Eventually, breathing will cease altogether and the heart stops. Death has occurred.
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.”
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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.”
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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.
