How Doctors Die

Complete article

by Ken Murray

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

....But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

Association Between Advance Directives and Medicare End-of-Life Expenditures

Medicare patients with advance directives specifying limits in treatment who lived in regions with higher levels of end-of-life spending were less likely to have an in-hospital death, averaged significantly lower end-of-life Medicare spending and had significantly greater odds of hospice use than decedents without advance directives in these regions, according to a study in the October 5 issue of JAMA.

Patients can use advance directives to document their preferences for the use or avoidance of life-sustaining treatments (living wills). "Although advance directives have become more common in the past few decades, evidence is mixed on whether they change the course of treatment provided near the end-of-life," according to background information in the article.

"The wide variation in end-of-life Medicare expenditures across geographic regions suggests that default treatment levels also vary regionally. Advance directives specifying limits at the end-of-life may have their greatest impact in regions where the norms are to provide very high-intensity end-of-life treatment."

Lauren Hersch Nicholas, Ph.D., M.P.P., of the University of Michigan, Ann Arbor, and colleagues conducted a study to analyze the relationship of advance directives for Medicare patients with the cost and aggressiveness of end-of-life treatment in geographic regions across the United States. The researchers collected survey data from the Health and Retirement Study for 3,302 Medicare beneficiaries who died between 1998 and 2007 linked to Medicare claims and the National Death Index. Various models examined associations between advance directives, end-of-life Medicare expenditures, and treatments by level of Medicare spending in the decedent's hospital referral region. The average age of the beneficiaries at death was 83 years; 56 percent were women. Regions were characterized by quartiles of end-of-life spending averaged across a 7-year period. Decedent's region intensity was determined by zip code of residence.

Among the findings of the researchers, decedents residing in low spending regions were more likely to have a treatment-limiting advance directive than decedents in high-spending regions (42 percent vs. 36 percent). In high-spending regions, adjusted spending on patients with a treatment-limiting advance directive was $33,933, whereas adjusted spending for patients without an advance directive was $39,518 (difference, -$5,585). Having a treatment-limiting advance directive was not associated with differences in aggregate end-of-life spending for decedents in low- and medium-spending regions.

In high-spending regions, patients without an advance directive had a 47 percent adjusted probability of in-hospital death, whereas those with an advance directive had a 38 percent probability of in-hospital death. "The equivalent results for in-hospital death for those in medium-spending regions were 42 percent without an advance directive and 37 percent with an advance directive. In high-spending regions, patients without a limiting advance directive had a 24 percent adjusted probability of hospice use, whereas those with a directive had an adjusted probability of hospice use of 41 percent," the authors write.

Advance directives were associated with higher adjusted probabilities of hospice use in high- and medium-spending regions, but not in low-spending regions.

"Advance directives are associated with important differences in treatment during the last 6 months of life for patients who live in areas of high medical expenditures but not in other regions. This suggests that the clinical effect of advance directives is critically dependent on the context in which a patient receives care. Advance directives may be especially important for ensuring treatment consistent with patients' preferences for those who prefer less aggressive treatment at the end of life but are patients in systems characterized by high intensity of treatment," the researchers conclude.

Agenda proposed to promote compassionate care

National survey shows about half of patients say it's missing in the US health care system

In light of a national survey showing that only about half of patients believe the U.S. health care system is a compassionate one, the Schwartz Center for Compassionate Healthcare today proposed an agenda for improving such care in an article in the September issue of Health Affairs, the nation's leading health policy journal.

"For most clinicians, compassionate care matters because it is fundamental to the practice of medicine, ethically sound, and humane," according to lead author Beth Lown, MD, medical director of the Schwartz Center and an associate professor of medicine at Harvard Medical School. "However, there is also strong evidence that compassionate care improves health outcomes and quality of life, increases patient satisfaction, and lowers health care costs. Particularly as our health care system faces such intense pressure to reduce costs, we must make sure that this critically important element of health care is not lost."

To ensure that all patients receive compassionate care, the Schwartz Center recommends that:

- The federal government include compassionate care measures in national quality standards and create a Compassionate Care Index (CCI) to measure the level of compassionate care being delivered by health care institutions and individual providers;
- The Patient-Centered Outcomes Research Institute created by the Affordable Care Act fund comparative effectiveness research to determine which aspects of compassionate care have the greatest impact on health outcomes, quality of life, and patient satisfaction;
- New health care payment systems, including the Centers for Medicare and Medicaid Services' proposed value-based purchasing system, reward providers for the compassionate care they provide to patients and families; and
- Comprehensive training programs be developed to help health care professionals and trainees develop the necessary skills required for compassionate care.

The Schwartz Center's recommendations are in response to the results of a national survey of 800 patients and 510 doctors that it conducted in the fall of 2010. The survey found that only 53 percent of patients and 58 percent of doctors rate the U.S. health care system as a compassionate one, despite strong agreement among patients and doctors that compassionate care is important to successful medical treatment and can even make a difference in whether a patient lives or dies.

The survey also found that more than two-thirds of patients (67%) and more than half of doctors (55%) are concerned that the changes taking place in the U.S. health care system, including the increased emphasis on controlling costs, will affect the ability of doctors, nurses, and other health care professionals to provide compassionate care. At the time of the survey, more than half of the doctors surveyed (53%) said they were already spending less time with patients than they wanted.

According to the Schwartz Center, compassionate care is defined by the following four essential characteristics:

- Empathy, emotional support, and a desire to relieve a patient's distress and suffering
- Effective communication at all stages of a patient's illness and treatment
- Respecting patients' and families' desires to participate in making health care decisions
- Knowing and relating to the patient as a whole person, not just a disease

"There is a great deal of emphasis in health care these days on providing 'patient-centered' care, but care without compassion cannot truly be patient centered," said Dr. Lown, who also works as a general internist at Mount Auburn Hospital in Cambridge, Massachusetts.

"Health care providers need time to listen to their patients, education in the skills of compassionate care, feedback based on measures of their performance, and leaders and systems that support healing relationships with patients and families," she and her co-authors write.

"Compassion is as important in helping patients manage chronic and acute conditions as it is at the end of life," Dr. Lown added. "To improve quality and reduce costs, compassion should be present in all aspects of our health care system."

Hospice improves care for dementia patients and their families

Hospice services substantially improved the provision of care and support for nursing home patients dying of dementia and their families, according to an analysis of survey responses from hundreds of bereaved family members. The research comes as hospice funding has received particular scrutiny in the debate over Medicare spending.

"People whose loved ones received hospice care reported an improved quality of care, and had a perception that the quality of dying was improved as well," said Dr. Joan Teno, a Brown University gerontologist and the lead author of the study published online in the Journal of the American Geriatrics Society. "This is one of just a few studies out there that has examined dying with dementia where the predominant site of care is a nursing home and can report the benefits of hospice services. As just one example, for nursing home patients not in hospice, one in five family members reported an unmet need for shortness of breath while that was only 6.1 percent for people in hospice."

Hospice care was a great comfort to Bartley Block, of Providence, when he lost his wife, Janet, to dementia in October 2010. He and Janet received service from Home and Hospice Care of Rhode Island on and off for about a year as her condition wavered, and then ultimately declined. Block said that even after his wife began struggling to eat, she still would get up and walk. Hospice workers would help the couple take walks at the nearby Tockwotton Nursing Home and patiently feed her food that they'd puree.

"It meant a great deal to her and to me," Block said. "It not only was able to calm her, but it was calming to me. There were spiritual sessions for me. They did so much for her to make her life easier."

That kind of experience is reflected in the responses of hundreds of families in the survey. In all, Teno's team asked 538 family members of nursing home patients who died of dementia to reflect on the care and support they experienced and observed at their loved one's end of life. Of that group, 260 received hospice care and 278 did not. Among the report's key findings:

Family members of hospice recipients were 51 percent less likely to report unmet needs and concerns with quality of care. They were 49 percent less likely to report an unmet need for management of pain. They were 50 percent less likely to have wanted more emotional support before their loved one's death. They rated the peacefulness of dying and the quality of dying more positively than families whose loved ones did not receive hospice care.

The survey also found that people who felt their loved one received hospice care "too late" had stronger concerns about care and support in almost every one of the survey's many measures. They felt worse off than people who had no hospice care at all.

"These are people who get slammed around the healthcare system in the last days of life," Teno said. "These are people with transitions who go from an acute care hospital to a nursing home in the last 24 hours. They are reacting to a set of circumstances that shouldn't have occurred."

Dementia is a particularly important area to study, Teno said, because the untreatable condition has only recently gained recognition as being terminal illness. The unpredictability of its progress, however, has led to a large number of dementia patients staying in hospice for longer than people with other conditions. That has made dementia a focus for scrutiny in discussions of cost.

But the study provides new evidence that hospice provides a meaningful benefit to nursing home patients with dementia and their families, such as the Blocks, Teno said. Policymakers should therefore factor in that evidence as they discuss the future of Medicare funding.

"It is a terminal illness," Teno said. "As we do payment reform we should preserve access and quality of care for those persons dying of dementia."

From Healing to Hospice: The Shift Toward a Good and Compassionate Death

University at Buffalo School of Social Work Professor Deborah P. Waldrop has seen people die. Too often, their lives have ended in pain and despair, spending their final days in an alienating institutional environment, just another patient in an impersonal progression that leads to what she calls “reciprocal suffering” for families who also watch their loved ones die.

There is another way. In the decades and multiple settings Waldrop has worked with terminal patients, she has seen a growing emphasis on factors that contribute to a “good death.” People can make that life transition in a home that has sustained them for many years, surrounded by the people who have given their lives meaning. “Comfort” can be the defining goal of a death without pain and suffering.

Too often, Waldrop says, critically and chronically ill patients lack information about options for care that can lead to that “good death” scenario. Bridging that gap -- identifying what factors or “trigger points” at which important conversations should happen -- is what her latest end-of-life research is all about.

She discusses her research in a video interview:



“People are without information, and providers and families often don’t have the skills to ask difficult question such as: ‘How much longer do you want to keep going back to the hospital?’” says Waldrop.

“There is an avoidance of death in our society that often sidesteps these questions. When asked, the majority of people, say they want to die at home surrounded by their family. Yet, actually 60 percent of chronically ill people die in hospitals and 20 percent die in nursing homes, so these wishes are often unfulfilled. There may be many reasons for this.

“We’re not having these conversations. We’re not addressing what people want. When you don’t really talk about it, things like unwanted aggressive treatment or another emergency room visit happen by default.”

Waldrop is a soft-spoken academic and researcher whose words accelerate and whose tone fills with intensity when she addresses the urgency of her work. If the idea of a good or more compassionate death is starting to enter the American mainstream, it’s an uneven process, with stops and starts. Various professional organizations throughout the country are focused on improving options for care in advanced chronic illness and encouraging conversations about individual wishes at the end of life.

But there’s an abyss that exists between what people say they want and what they end up doing, Waldrop says, a gap that brings physical, emotional, psychological and existential pain. And because more and more people are living longer, it’s more common than ever. The difference between choosing palliative care and continuing along a traditional medical path with a cure as the goal is often profound.

The bulk of Waldrop’s research consists of face-to-face interviews, almost 200, of patients and the people who have taken on the responsibility of caring for these terminal patients.

So far, the factors that affect the decision to ask for hospice care break down into two categories. There are clear physical factors. When does a person lose the ability to manage the activities of daily living?

“The loss of functional abilities is key,” Waldrop says. “That requires more caregiving from families. When someone has pain or symptoms that are out of control, that’s one of the trigger points to families that lead them to say they can’t do this anymore. What is their life going to look like from now on? How am I going to manage?”

There is also a spiritual, existential or psychosocial side. At what point do people realize they are dying? There is a point at which they recognize that death is approaching and they just want to be comfortable and surrounded by their family.

“What is it that brings people to the point at which they can consider different options?” Waldrop asks. _Once she identifies the trigger points that have determined when patients move from curative to palliative care, Waldrop will share these factors with patients facing terminal illnesses, their loved ones and also with professionals whose job it is to talk with families about the end of life.

Waldrop will continue to interview through July, when her grant from the National Institute of Nursing Research ends. Then she will publish her final conclusions._“As soon as possible,” she says when asked when the research will be complete. “This is my life’s work. I spent 25 years as a social worker sitting with people who were making difficult decisions among bad options. Additional and better options such as hospice and palliative care in a variety of settings now exist, but access is uneven. And, it has to start with frank, honest conversations about what people want and what families can do.

“People don’t have to pursue aggressive treatment as though there were no choices. The best approach for people is not always ‘Give me all you got.’ And these options have been slow to make it to the mainstream of medical specialties.

“This may be what people want most of all.”

Attitudes toward end-of-life care in Korea

Attitudes toward end-of-life care for cancer patients vary, but most patients, family members, oncologists and members of the public are receptive to withdrawing futile life-sustaining treatments in people who are dying, found a Korean study in CMAJ (Canadian Medical Association Journal.

The study, by researchers in Korea, aimed to determine attitudes towards end-of-life care, as most previous studies looked only at euthanasia and physician-assisted suicide. The researchers surveyed 3840 people, including 1242 cancer patients, 1289 family caregivers, 303 oncologists from 17 hospitals from across the country and 1006 members of the general Korean population.

"In this survey of attitudes toward critical interventions at the end of life of terminally ill patients, the most interesting finding was that most of the participants in each of the four study groups — patients, family caregivers, oncologists and members of the general public — showed a positive attitude toward the withdrawal of futile life-sustaining treatment and active pain control," writes Dr. Young Ho Yun, National Cancer Center, Goyang, Korea, with coauthors.

Palliative care in Korea is still fairly rare, and oncologists and family physicians in institutions provide medical care.

Oncologists hold key to curbing cancer costs

VCU Massey Cancer Center researchers propose evidence-based changes in oncologists' practice to cut cancer costs, ensure quality care for all and save money for future medical advances

The cost of cancer care is threatening to bankrupt our healthcare system. New drugs are prolonging life, but at staggering costs. This coupled with aging baby boomers and an increasing population mean the U.S. will spend $173 billion annually on cancer care by the year 2020. This trend is not sustainable; however, there are evidence-based ways to maintain or improve the quality of care while saving money for the new therapies being discovered every day.

So argue VCU Massey Cancer Center researchers Thomas Smith, M.D., and Bruce E. Hillner, M.D., in an article in The New England Journal of Medicine, Bending the Cost Curve in Cancer Care, in which they present 10 changes medical oncologists can do to flatten costs, maintain or improve care and save money for future medical advances. Smith is a nationally recognized oncologist and Endowed Chair of Palliative Care Research at VCU Massey Cancer Center, and Hillner is a professor and eminent scholar in the Department of Internal Medicine at the VCU School of Medicine and member scientist at VCU Massey Cancer Center.

In a challenge to their colleagues one week before the annual meeting of the American Society of Clinical Oncologists (ASCO), the authors suggest changes in the behaviors and attitudes of medical oncologists that could save the nation billions of dollars.

"First, we take curative care and clinical trials off the table. They are vital to advances and save lives," says Smith. "However, we must critically examine our current practices for ways to reduce costs in order to maintain quality cancer care for all of our patients while continuing to advance medicine. This raises difficult issues that impact physician income and requires a new level of open and honest communication between doctors and patients. But the longer we wait to address these issues, the worse it will be for future patients."

The authors focus on the treatment of patients with incurable solid tumors, and many of their recommendations reinforce current ASCO and National Comprehensive Cancer Network (NCCN) evidence-based guidelines. Some of their proposals call for more frank discussions about end-of-life care between physicians and patients, and others urge increased scrutiny when using expensive treatments and surveillance tests. They argue that by establishing these guidelines, oncologists would be less likely to continue treatments in situations where the treatments no longer beneficial for the patient.

"It is important that we are compassionate and honest with our patients about when continuing chemotherapy causes more harm than good," says Hillner. "Two simple but critically important points: we should stop routinely giving chemotherapy to patients who are so weakened by the disease that they cannot walk unaided into the clinic. And when the cancer has grown through three successive regimens, it is time to switch teams and use hospice. Research has shown that for patients in these situations it is highly unlikely that continued chemotherapy will prolong life."

The authors suggest the following changes in oncologists' behavior:

* Limit surveillance testing or imaging to situations in which a benefit has been shown.
* Limit second-line and third-line treatment for metastatic cancer to sequential single-agent chemotherapy for most solid tumors.
* Limit chemotherapy to patients with good outcomes, with an exception for highly responsive disease.
* In metastatic solid cancers, replace the routine use of white-cell-stimulating factors with a reduction in the chemotherapy dose.
* For patients who are not responding to three consecutive regimens, limit further chemotherapy to clinical trials.

The authors suggest the following changes in oncologists' attitudes and practice:

* Recognize that the costs of care are driven by what we do and do not do.
* Set more realistic expectations both for doctors and patients.
* Realign compensation to value cognitive services, rather than chemotherapy, more highly.
* Better integrate palliative care into usual oncology care (concurrent care).
* Accept the need for cost-effective analysis and for some limits on care.

"Our recommendations redefine current oncology practices, and we recognize that these raise tough questions," says Hillner. "But now is the time to talk about how we can preserve money to ensure all patients receive the best available care while setting aside funds for new and advanced therapies. We have outlined the starting points for discussion and hope a much-needed national dialogue will follow."