JAMA Forum: What Near-Death Experience Can Tell Us About Medical Care

David Cutler, PhD (Image: Ted Grudzinski/AMA)In 2005, a survey was conducted examining how aggressively physicians treat patients near the end of life. Some 1500 primary care physicians and cardiologists were presented a scenario describing an 85-year-old man with severe congestive heart failure. The fictional patient was described as receiving maximal medications, using supplemental oxygen at home, and not being a candidate for surgery or other procedures to treat blockages in blood vessels to the heart. When the patient experiences worsening shortness of breath (a symptom of fluid accumulating in his lungs) and makes an office visit, increasing his supplemental oxygen makes him more comfortable.

The survey group was then asked “How often (always/almost always, most of the time, some of the time, rarely) would you arrange for each of the following?” The choices were

A. Allow the patient to return home and receive increased oxygen and increased diuretics (to remove excess fluid from the body)

B. Admit to the hospital (but not to the intensive care unit [ICU] or coronary care unit [CCU]) for aggressive removal of excess fluids

C. Admit to the ICU/CCU for intensive therapy and monitoring

D. Place a pulmonary artery catheter to assess the severity of heart failure and to optimize drug treatment

E. Recommend a pacemaker

F. Initiate or continue discussions about palliative care

Recently, the responses to this survey were analyzed by me, Ariel Stern, PhD; Jonathan Skinner, PhD; David Wennberg, MD, MPH. Although the data are nearly a decade old, there is no reason to think that answers today would be any different. Our analysis of these responses reveals the troubled state of American health care—as well as the possibilities.

Options A and B are less-intensive ways of managing the patient and each finds support in the literature. Three options—C, D, and E—are much more intensive but have no evidence to support them (they were not recommended in the guidelines then and are not recommended now). Option F, a palliative care discussion, is clearly warranted; half of patients like this die within a year. Thus, a physician following practice guidelines would be expected to choose A or B, plus F.

But the answers that physicians gave were far from these recommendations. One-quarter of physicians recommend 1 of the 3 most aggressive options. Only about half would likely have a palliative care discussion. Primary care physicians and cardiologists differ slightly in their answers, but not enormously so. Very aggressive treatments were supported by 22% of the primary care physicians and 28% of the cardiologists, while only 49% and 45% would have a palliative care discussion.


Cowboys vs Comforters

This issue has great import for medical spending. Based on the responses to our survey, we called the physicians who consistently advise aggressive end-of-life care not supported by guidelines “cowboys,” and those who would have a palliative care discussion “comforters.” A physician can be both a cowboy and a comforter, but empirically, few are.

Cowboys and comforters are not randomly distributed in the population, and medical spending reflects this. Medicare spending for end-of-life care is 60% more in an area where physicians are mostly cowboys than in one with few cowboys. An area full of comforters will spend 27% less. Generally, spending in this arena negatively tracks patient preferences. Patients routinely express a desire for comfort over aggressive care at the end of life.

What makes physicians become cowboys or comforters? Many physicians say that the fear of being sued for malpractice drives them to do too much. But our survey evidence does not support this theory. Although 41% of cardiologists report that they have sometimes or frequently done a cardiac catheterization because of malpractice fears, there is no correlation between the response to that question and being a cowboy. Nor is there a relation between physicians who report responding to patient expectations and being a cowboy. Some characteristics are correlated with not being a cowboy: those who are younger or who practice in larger groups are much less likely to be cowboys than other physicians.

In reality, I think there are 2 fundamental factors at work, and each is important for the future of medical care. First, although the evidence of what is appropriate may exist in guidelines and medical journals, nothing compels physicians to follow it. A cardiologist can believe he has better outcomes than the literature suggests. And if the issue comes up, “my patients are different” or “my outcomes are better” usually ends the conversation. These statements cannot be generally true or the literature would reflect that. But who can say if they are true for any particular physician?

The interesting question is why these statements are rarely challenged. Sometimes, big systems do have these conversations, which may explain why there are fewer cowboys in hospital-based and group practices. Intermountain Healthcare in Utah is famous for the idea that internal standardization can lead to better care. Even today, though, Intermountain remains the exception.

Look behind the curtain, and one sees the importance of money. Standardization generally results in a greater reduction in overused services than an increase in underused services. Thus, in a fee-for-service system, standardization results in a revenue loss. Add to this the financial and psychic costs of physician profiling (to compare practice patterns) and standardization, and it is easy to see why even the largest systems avoid it.

As the payment system changes, this calculus will change as well. In an accountable care organization (ACO), money saved by avoiding unnecessary procedures becomes surplus to the organization. The same is true for organizations accepting a predetermined bundled payment for an episode of illness. There are more than 600 ACOs in the country today, and many hundreds of institutions are receiving bundled payments. Thus, internal analysis and standardization may become significantly more frequent.


Talking About Palliative Care

Why do only half of clinicians discuss palliative care for patients at the end of life? A likely reason is that such discussions are painful and physicians naturally wish to leave them to someone else. This choice may be easy to rationalize because so many physicians are involved in patient care near the end of life. The primary care physician can say that she is not an expert in severe congestive heart failure and hence the cardiologist needs to discuss options with the patient. The cardiologist can say that the primary care physician knows the patient better and is better equipped to have the palliative care discussion. Each is right, but the outcome is still bad.

Again, what is needed is a system for seeing that such discussions take place. At institutions such as Gundersen Lutheran in Wisconsin, end-of-life conversations are routine as people age and end-of-life spending is correspondingly lower. In other areas, the conversations are avoided. Not surprisingly, the Dartmouth Atlas shows enormous variation in end-of-life care spending across the country.

But there is cause for hope: if all physicians followed the guideline recommendations, end-of-life costs would decrease by one-third, and overall Medicare costs would decrease by 15%. This outcome can be achieved without rationing: gathering data, having discussions with colleagues and patients, and setting standards would do an enormous amount.

My suspicion is that much of health care is like the case of caring for the fictional 85-year-old with congestive heart failure. No one is trying to do the wrong thing, but the consequences of unstandardized and often excessive care is wasted money and unnecessary pain. Establishing the right systems, realigning payments, and pushing for the right care can accomplish far more than many think is possible.


About the author:

David M. Cutler, PhD, is the Otto Eckstein Professor of Applied Economics in the Department of Economics and Kennedy School of Government at Harvard University and a member of the Institute of Medicine. He served on the Council of Economic Advisers and the National Economic Council during the Clinton Administration and was senior health care advisor to Barack Obama’s presidential campaign. He also was involved in the debate over the Massachusetts health reform legislation discussed here and is a Commissioner on the state’s Health Policy Commission. Heis the author of the recently published The Quality Cure, and Your Money or Your Life (2004). He tweets at @cutler_econ.

About The JAMA Forum: JAMA has assembled a team of leading scholars, including health economists, health policy experts, and legal scholars, to provide expert commentary and insight into news that involves the intersection of health policy and politics, economics, and the law. Each JAMA Forum entry expresses the opinions of the author but does not necessarily reflect the views or opinions of JAMA, the editorial staff, or the American Medical Association. More information is available here and here.



Improved end-of-life care, limited use of imaging, and reduced drug costs could reduce the increasing costs of cancer care, according to 2 oncology experts. (Image: fluxfoto/iStock.com)

Improved end-of-life care, limited use of imaging, and reduced drug costs could reduce the increasing costs of cancer care, according to 2 oncology experts. (Image: fluxfoto/iStock.com)

Oncologists could cut the ever-increasing cost of cancer care by improving end-of-life care, limiting the use of expensive imaging, and using cancer drugs more cost-effectively, according to experts at the Johns Hopkins Medical Institutions in Baltimore, Maryland.

“We need to find the best ways to manage costs effectively while maintaining the same, if not better, quality of life among our patients,” Thomas Smith, MD, coauthor of the article released online today in The Lancet Oncology, said in a statement.

Smith and coauthor Ronan Kelly, MD, noted that the number of new cancer cases diagnosed annually is projected to increase to 21.4 million in 2030. In the United States the cost of care is expected to rise 39% by 2020, to $173 billion. But that cost isn’t driven only by the aging population and an increased demand for services. “In the [United States], 91% of the rise in costs was due to price increases,” they wrote.

The best opportunities for safe, ethical cost reductions are in caring for patients with metastatic cancer, not new surgical or radiation treatments, clinical trials, curative care, or pediatric care, according to Smith and Kelly, both oncologists at Hopkins’ Sidney Kimmel Comprehensive Cancer Center.

Their article notes that among Medicare’s cancer patients, 60% are hospitalized in the last year of their life, 30% die in a hospital, and only 54% ever use hospice care. However, “hospice and palliative care provide better overall care at a smaller cost than hospital care,” they wrote. “Hospice care also improves symptoms, reduces caregiver distress, and saves $2700 to $6500 per person as compared with care that does not actively involve a hospice.”

They cited a 2012 study indicating that of 608 deaths at a tertiary care center, 229 of the patients were eligible for hospice care at their second to last visit, but only 17 were informed about it. Additional studies show that hospice or palliative care may reduce costly hospital readmissions, they added.

The US cost of cancer imaging has increased by about 5% to 10% annually between 1996 and 2006 “without attendant changes in mortality from metastatic disease,” the authors wrote. They noted that the cure rate from salvage chemotherapy for lymphoma is the same regardless of whether a recurrence is diagnosed clinically or by a routine surveillance positron emission tomography scan.

The American Society of Clinical Oncology addressed appropriate imaging use in its Choosing Wisely recommendations. “Clinicians explaining the truth to patients about curability [and imaging] will allow most patients to choose wisely,” Smith and Kelly wrote.

The high cost of new drugs—sipuleucel-T, used to treat advanced prostate cancer, costs $93 000 per course of treatment and prolongs survival for a median 4.3 months—should motivate clinicians to clearly define “meaningful clinical benefit” when they make treatment decisions, the pair added. “There does seem to be some recent enthusiasm to establish thresholds,” they wrote.

Their article explains how several approaches, including accountable care organizations, competitive bidding for drug prices, and shared decision making with patients may reduce cancer care costs.

“The oncology community should do its part to limit itself to use of evidence-based treatments, standardize care with pathways, transition away from fee-for-service to alternative payment methods, and change communication with patients about reasonable end-of-life care,” Smith and Kelly wrote.

“We need political leadership working together with oncologists and patients to explicitly address the issue of what value is needed to justify expensive treatments.”

Author Insights: Improving Clinicians’ Skills in Communicating About End-of-Life Issues No Easy Task

J. Randall Curtis, MD, MPH, a professor in the University of Washington’s division of pulmonary and critical care medicine in Seattle, and colleagues found that special training of medical trainees aimed at improving communication about end-of-life issues did not improve patients’ perceptions about the end-of-life care these trainees provided.

J. Randall Curtis, MD, MPH, a professor in the University of Washington’s division of pulmonary and critical care medicine in Seattle, and colleagues found that special training of medical trainees aimed at improving communication about end-of-life issues did not improve patients’ perceptions about the end-of-life care these trainees provided.

Offering educational sessions to internal medicine and nurse practitioner trainees to improve their skills in communicating about end-of-life issues failed to improve how patients and their families perceived the quality of end-of-life care provided by these trainees. The finding appears today in the special medical education edition of JAMA.

Discussions between clinicians and patients about end-of-life care are associated with decreased intensity of care, increased quality of life, and improved perceptions on the quality of dying. With that in mind, the authors of the JAMA study randomized more than 400 internal medicine and nurse practitioner trainees between 2007 and 2012 to either attend eight 4-hour sessions that were designed to improve end-of-life communication skills or receive usual education.

The group that received the special training worked on end-of-life communication skills by practicing on simulated patients and family members who were portrayed by actors. The sessions were adapted from a residential workshop associated with improved communication skills for oncology fellows.

But the researchers found that individuals who underwent the special training (178 internal medicine and 33 nurse practitioner trainees) fared no better than the control group (198 internal medicine and 36 nurse practitioner trainees) when patients assessed the quality of communication or the quality of end-of-life care provided by these trainees. In fact, patients seen by the specially trained trainees reported a small increase in depressive symptoms.

Lead author J. Randall Curtis, MD, MPH, a professor in the University of Washington’s division of pulmonary and critical care medicine in Seattle, discussed his team’s findings with news@JAMA.

news@JAMA: Why did you do this study?

Dr Curtis: I think there’s convincing evidence that having the communication skills to discuss end-of-life care makes a big positive difference for families and patients. So we adapted an intervention developed and used for oncology fellows so it could be used earlier upstream with residents and nurse practitioner students. We wanted to see if they acquired new skills and we wanted to see patient- and family-reported outcomes.

news@JAMA: What did you find?

Dr Curtis: Our primary outcome was looking at patient-related quality of care, and we did not see a difference with the intervention. A subgroup analysis of patients who reported their health status as “poor” did find an improvement in their quality of care. So maybe healthier patients weren’t sick enough to appreciate the difference the training caused, but this is just speculation.

news@JAMA: What do you make of the increase in depressive symptoms among patients seen by the group that had the special training?

Dr Curtis: It was not an increase that would be consistent with a depressive disorder, which is interesting. It’s possible that having these discussions does cause some stress and sadness among patients, and if that’s the case, it’s important to take into account. These depressive symptoms were found among patients seen by first-year residents rather than by the older trainees. That raises the possibility that this kind of training in those least experienced may be associated with an increase in depressive symptoms [in patients], and that also is something to take into consideration.

news@JAMA: What do you suspect is the reason why these trainees did not improve perceptions of patients at the end of life?

Dr Curtis: We compared our simulation-based training to usual education that residents and nurses get, so one possibility is the intervention doesn’t work. But maybe acquiring these skills in a simulation setting may not translate into a clinical practice.

JAMA Forum: Fixing Disjointed Chronic Care

Stuart Butler, PhD

Stuart Butler, PhD

The US health care system does many things very well. But one thing it doesn’t do well is coordinate care over time and between sectors. Whenever a patient transitions from hospital to home or from hospital to nursing home or hospice, he or she is likely to end up confused and to encounter care glitches and perverse financial incentives. While the US health care system does a better job coordinating between sectors during illness episodes, better coordination between sectors over time is needed for Americans with lengthy illnesses.

Last year, I saw what many Americans face, when after excellent but ultimately unsuccessful hospital care for cancer, an almost destitute family member decided she’d rather go home to die peacefully than face more (expensive for everyone) treatment.  But frustrating licensing and Medicaid rules made it practically impossible for us, from many miles away, to arrange affordable and effective care for her at home. So she spent her final days, against her wishes and at considerable cost to taxpayers, at an inpatient Medicaid hospice.

Her story is not unusual. Even for patients leaving a hospital with a chronic but not terminal illness, the challenge of understanding and complying with complex discharge instructions can make it impossible to avoid a hospital readmission or costly nursing home care. Perhaps not surprisingly, when dual-eligible (eligible for both Medicare and Medicaid) elderly Americans enter a nursing facility—and their networks of friends and neighbors who might have enabled independent living start to erode—they are much likelier than other residents to remain there until death.

Why are there such problems with transitions between sectors in the United States? For starters, there is the perverse silo payment system for programs like Medicare and even many private insurers. This leads to a cost-shifting shell game that raises total costs and leads to disjointed and worse care. To avoid certain medical costs not easily reimbursable by Medicare, for instance, many long-term care facilities feel they must bounce residents back to the hospital for expensive “acute care” and “rehabilitation” care that will be covered by the hospital and Medicare.

Medicare and other payment systems also have encouraged costly hospital readmissions by covering multiple inpatient episodes without providing what one might call “after-sales service” that might prevent a recurrence.

Then there is the lingering fee-for-service culture of American medicine that still focuses too much on fixing things rather than on promoting health and coordinating the long-term management of illness. When you add to this fix-it mindset the disinclination of many physicians, even oncologists, to discuss palliative and hospice care until late in treatment, it’s not surprising that so many end-stage transitions are needlessly stressful, both emotionally and organizationally.

Fortunately, we can go down a much better and also less-costly road if we look at some interesting innovations and align payment incentives to them.

For example, while it is true that the Obama Administration’s recent Medicare readmission penalties for hospitals may be somewhat clumsy and even unfair, the rules are also spurring coordination. The New York Times reports on hospitals now calling discharged patients regularly, arranging physician appointments, sending medication reminders, and coordinating social services. The newspaper even reports that a UCLA Medical Center hospital care manager helped arrange a more accessible public housing unit for a stroke patient.

These efforts are likely to pay off in better care at lower cost. A recent study on transitional services for high-risk Medicaid patients in North Carolina found these patients were 20% less likely to be readmitted, thanks to such things as simply educating patients and families about managing chronic conditions and having a nurse follow up after discharge.

Leading-edge hospital systems like Geisinger in Pennsylvania are using vertical integration techniques to improve care while reducing costs by better managing transitions between levels of the health care system. For instance, the system, which also has its own insurance company, has paid for assistants in some physician practices to coordinate follow-up and reduce cost.

Geisinger also “embeds” physician assistants and nurse practitioners in more than a dozen Medicare skilled nursing facilities to manage resident care and avoid hospital readmission. It is piloting telemedicine services to tackle acute episodes in nursing homes that might otherwise lead to hospitalization. And having recently won a Medicaid contract in Pennsylvania, Geisinger is generally focusing on removing the silos between its hospitals and nursing homes.

Much more can be done to align hospital and physician services with the local community and empower many more patients with chronic conditions to live less expensively at home. When I was visiting a family member in England last year, he received a lengthy call from the district nurse, who called every couple of weeks to coordinate his treatment for congestive heart disease with the general practitioner, pharmacist, and hospital. The nurse discussed his diet, exercise, and temperament; asked how his wife was doing; and talked to both of them about his care. She also visited regularly. The century-old UK district nurse system provides a network of community-based skilled nurses who coordinate care, provide basic services, and support family members. When I was being brought up in England in the 1950s, everyone in the village knew the district nurse on her bicycle.

In some ways, America’s leading health systems are just catching up with this traditional approach to care coordination.

Other promising innovations here include Grand-Aides , who are state-certified individuals with medical training (such as nurse’s aides) and additional specialized training to work in the community. Other initiatives around the country show the enormous benefits of community-based coordination that bridges the gaps between hospital, physician, and a patient’s home community.

But all these promising approaches still face obstacles. Public and private payment systems typically do not properly reward initiatives by health systems or by community-based coordinators. Better clinical and performance information needs to be made available and explained to care coordinators dealing with patients who have chronic illnesses. And we need to reduce the firewalls between payments to hospitals, local providers, and social workers to encourage commonsense, less costly, and proven approaches to coordination.


About the author: Stuart M. Butler, PhD, is Director of the Center for Policy Innovation at the Heritage Foundation in Washington, DC, where he focuses on developing new policy ideas. Previously he served as Vice President for Domestic and Economic Policy Studies. He is also an Adjunct Professor at Georgetown University’s Graduate School.

About The JAMA Forum: JAMA has assembled a team of leading scholars, including health economists, health policy experts, and legal scholars, to provide expert commentary and insight into news that involves the intersection of health policy and politics, economics, and the law. Each JAMA Forum entry expresses the opinions of the author but does not necessarily reflect the views or opinions of JAMA, the editorial staff, or the American Medical Association. More information is available here and here.

Author Insights: Patients Face Too Many Burdensome Care Transitions at the End of Life

Joan M. Teno, MD, of Brown University, and colleagues found that many patients continue to receive aggressive care at the end of life, with on average 3 health care transitions in the last 3 months of life. Image: Joan M. Teno

Joan M. Teno, MD, of Brown University, and colleagues found that many patients continue to receive aggressive care at the end of life, with on average 3 health care transitions in the last 3 months of life. Image: Joan M. Teno

A growing number of older adults in the United States are dying at home, but many continue to face multiple health care transitions to different care sites and receive aggressive inpatient care in their final days, according to a study published in JAMA today.

The majority of individuals report that they would prefer to die at home rather than in a health care facility. There is also evidence suggesting that patients cared for in their homes at the end of life receive higher-quality care—particularly when hospice services are provided—and that such a setting may also ease grief and reduce trauma for loved ones. But most US adults die in some kind of institutional setting. To promote care that is more responsive to patient wishes, some advocates for quality improvement have proposed using the site of death as measure of the quality of care patients receive at the end of life.

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JAMA Forum: The Poorest of Times: A Shift in “Death Panel” Rhetoric

Diana Mason, PhD, RN

Diana Mason, PhD, RN

“It was the richest of times,” writes journalist Robert Lipsyte in his 1998 book In the Country of Illness: Comfort and Advice for the Journey. He’s speaking about the impending death of his exwife, Margie, who was dying of cancer. Lipsyte’s memoir vividly describes the remarkable transitions possible for patient, family, and friends when good end-of-life care is available. He explains in his son’s words: “There was a great energy and love in that room, and it was emanating from her, and flowing through us, and gave us the strength to overcome our own fears, our own weaknesses, and stay, and be with her.”

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Author Insights: Remembering the Lost Art of Prognosis

Physicians should provide realism and not allow unchallenged optimistic perceptions to unrealistically cloud patients’ views of their prognoses. (Image: JAMA, ©AMA)

A new study appearing today in the Archives of Internal Medicine adds to the body of evidence that a patient’s hopeful expectations following diagnosis of a disease or condition is associated with clinically important benefits. But Robert Gramling, MD, DSc, and Ronald Epstein, MD, urge physicians to be cautious about excessive optimism.

In an invited commentary in the same issue of the journal, Gramling, an associate professor of family medicine, and Epstein, a professor of family medicine, both at the University of Rochester Medical Center in New York, say that medical training and practice focuses on the arts of diagnosis and treatment while underplaying the art of prognosis. Continue reading