Cost of End-of-Life Care in the U.S. is Comparable to Europe and Canada, Finds New Penn Study

First Analysis of the Differences in Treatment and Costs of End-of-Life Care Among Developed Countries Shows Room for Improvement Across the Board

Newswise, January 21, 2016  – Despite widespread perception, the United States does not provide the worst end-of-life care in the world. 

In the first international comparison of end-of-life care practices, researchers from the Perelman School of Medicine at the University of Pennsylvaniaand colleagues from seven countries found that the United States actually has the lowest proportion of deaths in the hospital and the lowest number of days in the hospital in the last six months of life among the those countries, according to a new study published today in JAMA.

However, the United States performs poorly in other aspects of end-of-life care, especially related to high-technology interventions. 

Over 40 percent of patients who die with cancer are admitted to the intensive care unit (ICU) in the last six months of life, which is more than twice that of any other country in the study. Similarly, 39 percent of American patients dying with cancer received at least one chemotherapy treatment in the last six months of life more than any other country in the study.

Using data from 2010 to 2012, researchers compared the site of death, treatments, and care used, as well as hospital expenses during the last six months of life for 389,073 patients who died in seven countries: Belgium, Canada, England, Germany, the Netherlands, Norway and the U.S. 

In Belgium and Canada over 50 percent of patients died in the hospital, while in England, Norway, and Germany over 38 percent of patients died in the hospital. By comparison in the U.S. 22 percent, and in the Netherlands 29 percent of cancer patients died in the hospital, which is in accordance with most patients’ wishes.

“There’s a widespread perception that the U.S. spends a tremendous amount on end-of-life care, but until now there’s never been a comparative study to put U.S. spending and resource utilization in context,” said senior author Ezekiel J. Emanuel, MD, PhD, Vice Provost for Global Initiatives, the Diane vS. Levy and Robert M. Levy University Professor, and chair of the Department of Medical Ethics and Health Policy at Penn. 

“End-of-life care is intensive and expensive, and what we know now is that the US does not have the worst end-of-life care and that no country is optimal. All countries have deficits.”

Spending on end-of-life care was high in the U.S. at about $18,500 for hospital care in the last six months of life. Canada and Norway were even higher at $21,840 and $19,783 per patient, respectively, while Belgium, England, and the Netherlands were lower at $15,699, $9,342, and $10,936, respectively.

Importantly, these results suggest reasons for optimism, suggests Emanuel: “Care for patients dying with cancer has improved. As the U.S. shows it is possible to change care. In the early 1980s over 70 percent of patients with cancer died in the hospital and spending many days in the hospital was common. We can improve care and now countries need to commit to improving that care.”

“Every country has its own challenges to improve end-of-life care. There are still too many people with cancer dying in acute care hospitals when we know our patients prefer to die at home,” said Justin E. Bekelman, MD, an associate professor of Radiation Oncology and Medical Ethics and Health Policy, and lead author of the new study. 

“The U.S. continues to have high rates of ICU admissions and other markers of care intensity near the end of life. We can do better. We need a concerted effort toward making end-of-life care more consistent with our patients’ wishes.”

Using the results of this paper as a baseline for end-of-life care in the U.S. compared to other countries, the authors say moving forward it will be important for studies to focus on the cost of care outside of the hospital and better understanding the drivers of health care utilization disparities.

“This study focuses only on patients with cancer and mainly on their hospital services,” Emanuel said. 

“To really understand the costs and to develop new models for improved delivery of end-of-life care, we need a prospective study to evaluate three things: dying patients with other diseases, the full range of care both in and out of the hospital, and most importantly, the quality of that care.”

The study was funded by the National Institute on Aging (P01-AG19783), the National Cancer Institute (KO7CA163616), and the Commonwealth Fund (20130502).

Penn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. 

Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania(founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $5.3 billion enterprise.

The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 17 years, according to U.S. News & World Report's survey of research-oriented medical schools. 

The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $409 million awarded in the 2014 fiscal year.

The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania and Penn Presbyterian Medical Center -- which are recognized as one of the nation's top "Honor Roll" hospitals by U.S. News & World Report -- Chester County Hospital; Lancaster General Health; Penn Wissahickon Hospice; and Pennsylvania Hospital -- the nation's first hospital, founded in 1751. 

Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Chestnut Hill Hospital and Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2014, Penn Medicine provided $771 million to benefit our community.

WashU Expert: Five Holiday Talking Points for Families Facing Aging, End-of-Life Decisions

Don’t put off discussions about death and dying, says family relations expert

Newswise, December 18, 2015 —Few things are as certain as the end of life, so why is it so hard to talk about?

That’s the question many families will be grappling with as they get together over the holidays with extended families, including close relatives who are getting on in years or those battling a serious health issue.

While it’s easy to put off dark discussions during festive times, it’s best to have them sooner than later, said Brian Carpenter, a psychologist who studies family relations in later life at Washington University in St. Louis.

“These conversations bring up the possibility that someday these important people in your life are going to be sick or frail and eventually, one day, die,” said Carpenter, PhD, associate professor of psychological and brain sciences in Arts & Sciences.

“For people to imagine that, first of all, is uncomfortable. People don’t like to think about people they care about being infirm or more dependent than they are right now.”

Carpenter, who teaches courses on death and dying and the psychology of aging, says most families wait until some sort of crisis or emergency to talk about necessary topics like healthcare, housing preferences, financial planning, general values, and final wishes for family members who are older or ill.

At that point, difficult decisions have to be made quickly, and families experience a huge amount of stress. This heartbreak could be avoided if expectations and preferences were communicated earlier on, but many families avoid the topic, he says.

As part of his research, Carpenter has been building tools to help families talk about aging and end-of-life care. His laboratory recently completed a pilot study with about 55 families meant to evaluate an online tool for generating these types of discussions. Having the process online meant that families with children scattered around the country, and even the world, could still participate.

Based on his research, he offers advice on five topics that families facing aging or end-of-life situations should be sure to discuss. According to Carpenter, it’s helpful to start with four big categories: housing, medical care, finances, and end-of-life.

Whether the conversations happen over dinner, online, over the phone, or on the couch, families should get comfortable discussing a range of questions from these four areas. Here are a few examples.

• Housing. Are you happy where you live? If you couldn’t live here any longer, where would you want to go? Would you want to live with family? With friends? Nearby? Far away? What type of housing would you prefer?
• Medical care. If you were in a difficult medical situation, what treatments would you not want at all? How do you feel about your ability to tolerate pain versus taking medication that might help you feel less pain, but also less alert?
• Finances. What are your investments, assets, and liabilities? Where are your financial records located? Who would you like to have involved in managing your finances if you couldn’t do that for yourself?
• End-of-life decisions. What do you want to have happen to your body after you die? Do you want to donate your organs? What kind of service do you want? While these details provide helpful and necessary information about a person’s wishes, Carpenter has found that a fifth, more abstract category is equally important to discuss.
• The big picture. In order to have a meaningful conversation about death, it really helps to discuss what makes life itself meaningful. How do you think your life is playing out? What would be important to you as you approach the end of your life, in terms of how, with whom, and where you spend your time? What do you want to try to accomplish before you die?

“If talking meaningfully with your family and friends are a really high priority for you, and if you can’t do that any longer and that changes how you think about the quality of your life, people need to know about that,” Carpenter said.

“The idea is that people can’t talk about every possible scenario, because we can’t predict everything. Barring that, it’s better if people just know who you are and what you want, so down the road they can make choices for you that are consistent with what you would want.

While it’s not possible to predict everything that’s important to be discussed in these conversations, it’s important that family members know who you are and what you want.

“At the end of these interventions, people say that they feel, in some cases, more knowledgeable about what their family members want and what they prefer,” Carpenter said. “But more important to us, they say they feel better prepared to talk about them in the future. That’s really the outcome that we care most about. That’s what we’re hoping for.”

Study: Advance Directives Are About More Than Refusing Care

Younger people who fill out document request interventions

Newswise, October 1, 2015--A new study finds that nearly a third of people who fill out advance health care directives — documents that lay out a patient’s wishes for end of life care — request medical interventions. 

The research from DePaul University explores the choices people make in advance directives, where they store the documents and with whom they discuss their plans.

The study, “Assessing Advance Care Planning: Examining Autonomous Selections in an Advance Directive,” will be published in the fall issue of The Journal of Clinical Ethics. Lead author Craig M. Klugman, chair of DePaul’s Department of Health Sciences, and co-author Nicole M. Tolwin, a DePaul alumna and graduate student in nursing at the University of Illinois at Chicago, found a correlation between a person’s age and their request for interventions. 

Younger people requested interventions such as respiratory support or antibiotics more frequently than people over the age of 50. Researchers also discovered that many people may not be discussing their wishes with loved ones after an advance directive is completed.

“Contrary to common beliefs in the health care community, advance directives are used for more than refusing care,” said Klugman, a bioethicist and medical anthropologist at DePaul. 

“However, many participants indicated that they had not yet had a meaningful conversation with their future surrogate decision-maker, and this needs to be addressed.”

Researchers analyzed survey results from 491 individuals, ranging in age from 19 to 94, who wrote an advance directive through www.TexasLivingWill.org. 

“Knowing what patients value can provide guidance for unforeseen decisions,” said Klugman.

Other findings about interventions are:
• People over the age of 50 were more likely to refuse aggressive care in the document, while those younger than 50 were more likely to request interventions.
• Some 95 percent of respondents want to be free from pain during end of life care.
• The vast majority, 93 percent of respondents, described valuing quality of life over quantity. No difference was found by age group for this factor.
• Overall, two-thirds to three-quarters of participants chose to refuse interventions, but this outcome is still lower than findings in previous research.

Researchers also asked where individuals stored their advance directives, and with whom they had discussed them. Findings include:

• While many respondents turned their advance directive over to an attorney or physician, far fewer actually had conversations about the document with loved ones.
• Of those who had conversations about advance care planning, most discussed it with a spouse or partner, followed by a child or a sibling.

“It appears that many people hand a document to a person who may be involved in their future care decisions, but they don’t discuss what the document means, or what their wishes or values are,” said Klugman. 

“Having the document is important, but having the conversation is essential.”

Saint Louis University Launches Missouri’s First Palliative Care Fellowship

SLUCare Geriatrician: ‘Treat the Whole Person’

Newswise, September 28, 2015 — ST. LOUIS – As the number of older adults climbs at a faster pace in Missouri than nationally, Saint Louis University has started the first hospice and palliative medicine fellowship program in the state.

Palliative care physicians care for patients who need active treatment to manage a serious disease as well as those at the end of their lives. Many older adults receive palliative care, and Medicare recently announced plans to reimburse physicians for talking with their patients about end of life issues.

SLUCare Physician Group geriatrician Dulce Cruz Oliver, M.D., who is board-certified in hospice and palliative medicine and an assistant professor of internal medicine at SLU School of Medicine, directs of SLU’s new fellowship, which began in July.

“During the past five years that I have been an assistant professor of internal medicine at SLU, I’ve found that the more I worked with elders, the more passionate I have become about caring for those who are seriously ill, especially patients who are close to the end of their lives,” she said. “I love what we do and appreciate the opportunity to talk with our patients and really help them.”

The Hospice and Palliative Medicine Fellowship will train one physician this year in the subspecialty that cares for those who have chronic, life-changing illnesses like cancer, congestive heart failure or chronic obstructive pulmonary disease. Fourth year medical school students and residents also will receive training through a palliative care educational elective that is related to the program, Cruz added.

“Palliative care helps a patient adapt to all of the changes that come with a specific disease,” Cruz says. “This field creates an awareness of how important it is for doctors to treat the whole patient – not just his or her medical symptoms – to talk with and listen to patients.

“We need to hear from patients about their expectations and goals, and spend time with them to help them understand what is going on. For instance, we might explain to a patient how to complete an advanced directive or help a patient who has COPD deal with shortness of breath without taking a traditional medicine. We might help someone who is no longer able to work make that transition.”

In addition to the Hospice and Palliative Medicine Fellowship, Cruz has started the Supportive Care Clinic, a pilot program held twice a month for Saint Louis University Cancer Center patients who are referred by their physicians. “It’s not only a physician who provides the care, you need a team that might include a chaplain and social worker,” says Cruz, who is part of the treatment team.

Through specialized sessions, patients learn to experience their best possible quality of life as they deal with the emotional and psychological challenges presented by a cancer diagnosis. For example, they might explore ways to manage their pain that don’t involve taking drugs or strategies to cope with the anxiety that can accompany being diagnosed and treated for cancer. Cruz sees the service as an important addition to medical treatment, and is encouraged by how well the pilot program is being received.

Cruz’s interest in palliative care complements her medical specialty of geriatrics. As a little girl in Puerto Rico, Cruz saw her grandmother caring for members of their village who became ill, which inspired her to become a physician who takes the time to listen to the older adults she treats.

“My grandmother was a santigüera – a healer for her village in Lares, Puerto Rico. People would come to her with medical problems like joint pain or illnesses like shingles, and she prayed on them and gave them a natural remedy. I saw the impact of complementary medicine on our friends and family who looked to my grandmother for loving care.”

During her internal medicine residency, Cruz conducted research on palliative care, becoming intellectually drawn to the area of medicine. But after her medical training, her connection to the field became deeply personal as she watched a close friend battle ovarian cancer.

“The many difficulties and challenges she endured caused her and all of us around her to suffer. All of the things she went through would have been better if there had been a good palliative care program in place. I’m committed to training others to change the way palliative care is delivered in this city,” she said.

Cruz recently was selected as one of only 10 physicians or nurses in the nation into Cambia Health Foundation’sSojourns Scholar Leadership Program, which cultivates the next generation of health care providers to advance the field of palliative care.

The Sojourns Scholar program will support Cruz’s work at the Hospice and Palliative Medicine Fellowship and Supportive Care Center, in addition to funding professional development. Cruz will received mentoring in patient care from the Center to Advance Palliative Care, work on a research project at the National Institute of Aging and attend the Harvard Macy Institute to learn how to use new technologies to enhance the quality of her teaching.

Established in 1836, Saint Louis University School of Medicine has the distinction of awarding the first medical degree west of the Mississippi River. The school educates physicians and biomedical scientists, conducts medical research, and provides health care on a local, national and international level. Research at the school seeks new cures and treatments in five key areas: infectious disease, liver disease, cancer, heart/lung disease, and aging and brain disorders.