Outcomes of End-of-Life Discussions Vary by Race

A study in the Sept. 27 issue of the Archives of Internal Medicine looked at the end-of-life care of over 300 advanced cancer patients across the country. The researchers were specifically looking at the link between end-of-life care discussions, and the care patients received in the last week of life. White patients were more likely to receive care in line with their preferences, while black patients often had more aggressive treatment, even with a DNR (do not resuscitate) order in place. Authors Jennifer W. Mack, MD, MPH; M. Elizabeth Paulk, MD; Kasisomayajula Viswanath, PhD; Holly G. Prigerson, PhD discussed some of the findings with the Harvard Crimson:

Additionally, the findings indicated that black patients did not get the end-of-life treatment they had planned for; black patients who signed “do not resuscitate” orders were just as likely to get life-prolonging treatment as black patients who did not sign such an order.

“Any mismatch can influence the way the communication process goes in the [doctor’s office],” Mack said. She said the miscommunication might be a result of black patients being treated by non-black doctors, cultural differences in the way information is interpreted, and doctors unintentionally communicating differently to black patients.

Prigerson, the principal investigator for the study, said the discrepancy might be related to the religious beliefs of black patients, who tend to be more religious than white patients. She said that end-of-life conversations have little impact on religious patients because they believe their health depends on a higher authority.

K. “Vish” Viswanath, professor at the Harvard School of Public Health and another co-author of the study, said that the cause of the disparity is unclear, but also said he thinks that making information on terminal illness easier to understand and access will help all patients to better understand their condition.

According to Prigerson, the National Cancer Institute has agreed to fund a second study to investigate why end-of-life conversations appear less effective with black patients.

The study has been reported in MedPage Today, the Los Angeles Times' Booster Shots blog, McKnight's, and HealthDay News, and The Boston Globe's White Coat Notes blog.

Hospice Foundation of America conducted this special report on African Americans and End-of-Life Care as part of it's 2009 focus on Diversity and End-of-Life Care. The report, available on DVD, examines African American attitudes about care at the end of life, offers explanations as to why hospice, historically, has not been a choice for many African Americans, looks at grief and the African American community, and suggests ways to reach out to African Americans who are making end-of-life decisions.

Pain Awareness Month Highlighted

Hospice Foundation of America is joining with the American Pain Foundation (APF) to endorse the Virtual March on Washington this September to raise awareness about the barriers to accessing appropriate and effective pain management. APF’s 2010 campaign is called, “Uniting Our Voices, Conquering Pain Together.”

Read about the Myths of Pain on HFA’s website, and learn more about pain and palliative care.

Challenging Communication Between Doctor and Patient

The Boston Globe's Elizabeth Cooney raises the issue of the difficulties of doctor/patient communication and informed consent. These conversations are particularly important for patients learning about a life-limiting illness.

What doctors explain and what patients understand might be two very different things, recent research suggests.

Ideally, patients talk with their doctors about the pros and cons of a particular treatment, weighing the risks and benefits, exploring alternatives — including doing nothing — and then come to a conclusion. That’s the goal of the informed consent process, best known by the paperwork patients sign at the end saying they heard doctors describe what they may be getting into.

. . . . .

“Across the board, people often just didn’t have a good sense about what the pros and cons were. They tended to hear more about the pros than the cons,’’ said Dr. Michael Barry, senior author of the study. A primary care physician at Mass. General, he also leads the Boston-based Foundation for Informed Medical Decision Making. “That probably fits the American psyche about preferring action to inaction. . . . Patients often have an exaggerated view of the benefits.’’

Why doesn’t informed consent work better? For one thing, people are being asked to make crucial judgments when they may be overwhelmed by fear, pain, or confusion. For another, doctors may not be the best communicators. And the discussion takes place in a health care system that pays far more for doing a procedure than figuring out if it’s the right thing to do.

If physicians make most of their money doing procedures, said Dr. Alicia Fernandez, a professor of medicine at the University of California, San Francisco, who has studied informed consent, “It’s kind of hard to say to the patient, ‘By the way, you would do just as well if you don’t get it.’ ’’

Patients and doctors often feel they don’t have time in a 15-minute office visit to have complicated conversations.

Excellence in Hospice Social Work

The Social Work Policy Institute (SWPI) recently posted a report from the March 2010 symposium, Hospice Social Work: Linking Policy, Practice, and Research. They looked at the relationship “between quality hospice social work services, the mission of hospice, federal requirements, professional standards, and the current state of hospice research by social workers.” SWPI is a division of the NASW (National Association of Social Workers) Foundation.

Read the report on SWPI’s website.

In-home Hospice Care and Better Physical and Emotional Outcomes

The Journal of Clinical Oncology published a study of 342 terminal cancer patients and their loved ones online on September 13. The study, by Dr. Alexi Wright and colleagues at the Dana-Farber Cancer Institute in Boston, showed that those receiving hospice services in their homes were less likely to be diagnosed with post-traumatic stress disorder (PTSD) as were their caregivers. Patients who died in the hospital had more physical and emotional distress.

Read the abstract and press release, also see reporting from HealthDay News, Reuters, and CNN's Paging Dr. Gupta blog.

Hospice Benefit Changes for Terminally Ill Children

The Hill's Healthwatch Blog reports on a letter the Centers for Medicare & Medicaid Services sent to state health officials regarding changes to hospice benefits available for children under Medicaid. As a result of Affordable Care Act passed this summer, children will be able to receive curative treatment and hospice benefits at the same time (known as concurrent care.)

In a letter to state health officials, federal Medicaid director Cindy Mann said states will be required to submit new paperwork to indicate that "hospice is provided to children concurrently with curative treatment." The new rules apply to both state Medicaid programs and Children's Health Insurance Programs (CHIP) operating as Medicaid expansions.

States with separate CHIP programs are still free not to cover hospice services, but if they do, they must now offer curative treatment concurrently.

Prior to enactment of healthcare reform, "curative treatment of a terminal illness ceased upon election of the hospice benefit" Mann writes.

"We believe implementation of this new provision is vitally important for children and their families seeking a blended package of curative and palliative services. This provision will increase utilization of hospice services since parents and children will no longer be required to forego curative treatment."

Panel for HFA’s 2011 Educational Program Announced

HFA's 2011 program on Spirituality and End-of-Life Care features a panel that will bring myriad perspectives to the subject of spirituality and the experience of living with advanced and terminal illness. At a July planning meeting in Washington, DC, panelists exchanged best and innovative practices. They also shared their perspectives on how spirituality and religion are distinct, while concurring that a person's spirituality is often defined by religious beliefs. Panelists on the 2011 Spirituality and End-of-Life Care program will include:

• Kenneth J. Doka, PhD, MDiv, Professor of Gerontology at The College of New Rochelle
• Gary S. Fink, DMin, Chaplain and Dementia Project Coordinator at Montgomery Hospice, and Adjunct Faculty at Hood College Graduate School
• Carolyn Jacobs, PhD, MSW, Dean and Elizabeth Marting Treuhaft Professor at Smith College, School for Social Work
• Betty Kramer, PhD, MSW, Professor at the University of Wisconsin-Madison, School of Social Work
• Reinette Powers Murray, MSN, CNS, RN, Consultant, for The Peaceful Journey-End-of-Life Process program, and director of Quality Assurance/Improvement and Educator for Hospice of The Straits
• Martha Rutland, DMin, BCC, ACPE, Director of Clinical Pastoral Education at VITAS Innovative Hospice Care

Registration for the program will open later this month.

September 2010 Palliative Care Grand Rounds

The September edition of Palliative Care Grand Rounds for 2010, highlighting blog posts related to hospice and palliative care, is up at the AAHPM (American Academy of Hospice and Palliative Medicince) blog.

This is a great review of recent hospice and palliative care news and blog posts - check it out!