A Nurse Practitioner-Driven Palliative Care Intervention Improves Cancer Patients' Quality of Life

Recent studies have shown that palliative care interventions aimed at addressing patients' emotional, spiritual and social needs have a significant impact on cancer patients' quality of life and may even improve cancer patients' overall survival. Despite this, most cancer patients being cared for in their communities do not have access to these services.

Most cancer patients also do not have advance directives addressed and are not aware of the benefits of hospice services. In order to address this issue, researchers at Mayo Clinic in Florida decided to test whether a nurse practitioner-driven consultation that used quality-of-life assessment tools and advance directives tools resulted in improvement in the cancer patients' quality of life.


The researchers, who published their findings online in the Journal of Palliative Medicine, say their study suggests that a consultative visit between a nurse practitioner and a metastatic cancer patient goes a long way to improving that patient's emotional and mental well-being.


The study results were strongly positive despite the fact that only 26 patients were enrolled. A total of 100 had been planned but accrual to the study was halted when other recently completed randomized studies had shown the benefit of similar nurse driven palliative interventions. Patients also frequently refused to enroll if they were randomized to the "control" arm, which did not include a discussion with an oncology advanced registered nurse practitioner about advance directives and how their symptoms could best be managed. The 12 patients who did receive intervention from a nurse had a significant improvement in their emotional health, compared to the 14 patients in the control arm.


"The findings should be extremely helpful to oncologists in both community and academic medical practices concerned about how to incorporate palliative care, including discussions about advance directives in the outpatient management of their cancer patients," says the study's senior investigator, Gerardo Colon-Otero, M.D., an oncologist in the Division of Hematology/Oncology at Mayo Clinic in Florida.


The study also demonstrates that oncology clinics are not doing enough to help improve their patients' quality of life because they are so focused on treating the cancer. As a result, there are missed opportunities to provide additional support and many patients end up enrolling in hospice care much too late and do not have advance directives completed in a timely fashion.


"This study suggests that we shouldn't be afraid of these discussions, and that many of our patients actually welcome having advance directives and hearing about hospice services," Dr. Colon-Otero says. "This relatively simple strategy of having a nurse practitioner trained in palliative care and embedded within the oncology clinic to provide these consultation services is helpful, all the way around."

Based on the study findings, Dr. Colon-Otero and his colleagues at the Florida Society of Clinical Oncology received a grant from the American Society of Clinical Oncology (ASCO) to disseminate this program in Florida. As part of this grant, 13 nurse practitioners from both public and private cancer clinics throughout the state were trained at Mayo Clinic in Jacksonville in providing end- of-life counseling and symptom management to metastatic cancer patients. "This could be a model that many oncology practices can follow to bring palliative care and advance directives discussions to their cancer patients," he says.

Study Recommends Ways to Evaluate End of Life Care in Nursing Homes

While nursing homes are the place where an estimated 30 percent of Americans die, there currently exists no way to compare which institutions do a better job at managing end of life care. A new study appearing this week in the Journal of Palliative Medicine is starting a discussion over the need to create end of life quality measures in order to both inform consumers and provide nursing homes with incentive to improve care.

“Nursing homes are increasingly becoming the place where people go to die,” said Helena Temkin-Greener, Ph.D., a professor of Community and Preventive Medicine at the University of Rochester Medical Center (URMC). “By 2020, the percentage of people who die in these institutions will grow to 40 percent. And yet while we have seen an explosion of health care ‘report cards’ none of them can tell us which nursing homes are better at providing end of life care.”

The federal Centers for Medicare and Medicaid Services (CMS) compiles a wide range of information from staffing levels, inspection results, and measures of the quality of care – such a pressure sores, infections, and incontinence – for more than 16,000 nursing homes across the nation. This data is published on the CMS Nursing Home Compare website. While this information allows consumers to compare the performance of nursing homes for a number of aspects of care, it does not indicate how well or poorly a facility provides end of life care.

“The lack of measures of quality of care provided to dying residents not only denies patients and families the ability to make informed choices, but it also means that nursing homes do not have the information and the incentives to improve quality of end of life care,” said Dana B. Mukamel, Ph.D., professor in the Department of Medicine and senior fellow with the Health Policy Research Institute at the University of California, Irvine. “We know that there is a correlation between the publishing of quality measure and subsequent steps taken by providers – be that a nursing home or a hospital – to improve care.”

The study’s authors looked at two quality measures: the number of dying residents who were transferred to a hospital and subsequently died there and the use of hospice care in nursing homes. Their goal was to create prototypes of quality measures for end of life care and to demonstrate that such measures could be calculated from information that is currently available and added to the Nursing Home Compare report card.

Fewer hospital transfers – particularly at the end of life – are considered to indicate a higher level of care in a nursing home. Previous studies have shown that 45 percent of the time such transfers are inappropriate and avoidable. Because transfers increase the risk of illness, heighten stress, and are disruptive, they can accelerate a person’s decline in health and quality of life. The study found that 20 percent of long-term nursing home residents died in a hospital.

The use of hospice care – in which specialists in areas of pain and symptom management and psychological, emotional, and spiritual support and counseling are brought in to treat dying residents – also indicates a higher level of end of life care quality. Currently, an estimated 33 percent of nursing home residents received hospice care at the time of their death.

The authors are also studying two other quality measures that could signal the quality of end of life care – pain management and shortness of breath. The results of this study are expected to be published in another forthcoming paper.

“We believe that these measures, which can be readily calculated from data already being collected, have the potential to measure the quality of end of life care in nursing homes,” said Mukamel. “This is the first attempt to identify such a measure and we hope that this leads to a long overdue discussion in the health care community regarding this important topic.”
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Improving the experience of dying

In their February editorial, the PLoS Medicine Editors reflect on recent research by Olav Lindqvist and colleagues which describes nonpharmacological palliative care for cancer patients in the last days of life. The qualitative study found that the approaches used by palliative care staff were multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. The Editors comment: "[Lindqvist and colleagues' findings] reveal the complex and sometimes subtle caregiving approaches that palliative care staff take to improve the experience of dying for both patient and family…Research such as this not only provides hope that it is possible to have a good quality of death but also suggests that through research the experience of dying can be improved."

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."