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Let’s Talk About End-of-Life Care

A new study in JNCCN finds majority of people with cancer would like their physicians to ask them where they would prefer to receive end-of-life care.

FORT WASHINGTON, PA [January 22, 2018] — A new study published in JNCCN — Journal of the National Comprehensive Cancer Network finds a vast majority of patients would like their doctor to ask them about their preferences for end-of-life care. This is at odds with the fact that the survey also revealed that less than 10  percent had spoken with their physician about details such as where they would like to die. The researchers found that patients are more likely to spend their final days in a costly hospital environment, despite preferring to be at home or in a hospice facility.

The study was led by Amy Waller, PhD, of the Health Behavior Research Group at the University of Newcastle, in Australia. The researchers distributed a paper survey to patients in the waiting room of an oncology outpatient clinic. A total of 203 participants provided survey answers. Of those, 87 percent said they wanted their doctor to ask them about their end-of-life care location, while only 7 percent had actually had that conversation. Forty-one percent of respondents had discussed their preferences with a support person. Forty-seven percent responded to the survey by stating they would wish to remain at home, 34 percent preferred a hospice/palliative care unit, and just 19 percent would prefer a hospital. However, a multi-national study found that among cancer patients, between 12 percent and 57 percent spend their final moments at home, while between 22 percent and 78 percent are in hospitals.[1]

Amy Waller, PhD
University of Newcastle

“People’s choices were often influenced by the perceived impact on the family, likelihood of having wishes respected, or access to expert medical care,” explained Dr. Waller. “Supporting people’s wish to die at home instead of at a hospital can reduce costs to the system. However, this may come at a significant personal cost to the patient and family. It also means that those without informal carers might need support from community palliative care services, and currently there are not enough to go around.”

Given the sensitive nature of any discussion around end-of-life care, questions remain as to how exactly doctors should start these types of conversations.

Dr. Waller suggests: “One way to broach complex end-of-life topics might be by asking people what they know about their current health status and what they might expect over the next 12 months. This allows doctors to correct inaccurate views, but also provides an opening to start a conversation about what the patient might want in the future based on those expectations.”

“Shared decision-making on end-of-life care is something all physicians should engage in with patients and families,” said Maria Dans, MD, director of the Palliative Care Service at Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine. Dr. Dans is Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Palliative Care. “Caring for people with cancer ideally involves curing the disease, but even when it doesn’t, clinicians feel a strong responsibility to make sure their patients have the best end-of-life care they can.”

Dr. Waller’s study aligns with other research suggesting that patients prefer more open dialogue about end-of-life care. Dr. Dans stated that the exciting thing about this research is the potential it presents to advance those conversations.

“It would be interesting to know whether the people who filled out this questionnaire turned out to be more likely to have end-of-life care in the place of their choice,” said Dr. Dans. “Could simply asking these questions increase the number of people engaging in end-of-life care decision-making?”

In the JNCCN article, the researchers recommend using communication tools such as question prompt lists and hypothetical scenarios to introduce various end-of-life settings as a way of jumpstarting this important discussion.

Complimentary access to the study, “The Right Place at the Right Time: Medical Oncology Outpatients' Perceptions of Location of End-of-Life Care” is available until March 11, 2018 at JNCCN.org.

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About JNCCN—Journal of the National Comprehensive Cancer Network
More than 25,000 oncologists and other cancer care professionals across the United States read JNCCN—Journal of the National Comprehensive Cancer Network. This peer-reviewed, indexed medical journal provides the latest information about best clinical practices, health services research, and translational medicine. JNCCN features updates on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), review articles elaborating on guidelines recommendations, health services research, and case reports highlighting molecular insights in patient care. JNCCN is published by Harborside Press. Visit JNCCN.org. To inquire if you are eligible for a FREE subscription to JNCCN, visit http://www.nccn.org/jnccn/subscribe.asp. Follow JNCCN on Twitter @JNCCN.

About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.

The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Famly Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.

Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news. Follow NCCN on Twitter @NCCNnews and Facebook @National.Comprehensive.Cancer.Network.


[1] Cohen J, Pivodic L, Miccinesi G, et al: International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data. Br J Cancer 113:1397-404, 2015

About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives. For more information, visit NCCN.org.

The NCCN Member Institutions are:

  • Fred & Pamela Buffett Cancer Center
  • Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute
  • City of Hope Comprehensive Cancer Center
  • Dana-Farber/Brigham and Women's Cancer Center | Massachusetts General Hospital Cancer Center
  • Duke Cancer Institute
  • Fox Chase Cancer Center
  • Huntsman Cancer Institute at the University of Utah
  • Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance
  • The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
  • Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Mayo Clinic Cancer Center
  • Memorial Sloan Kettering Cancer Center
  • Moffitt Cancer Center
  • The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute
  • Roswell Park Comprehensive Cancer Center
  • Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine
  • St. Jude Children's Research Hospital/The University of Tennessee Health Science Center
  • Stanford Cancer Institute
  • University of Alabama at Birmingham Comprehensive Cancer Center
  • UC San Diego Moores Cancer Center
  • UCSF Helen Diller Family Comprehensive Cancer Center
  • University of Colorado Cancer Center
  • University of Michigan Rogel Cancer Center
  • The University of Texas MD Anderson Cancer Center
  • University of Wisconsin Carbone Cancer Center
  • Vanderbilt-Ingram Cancer Center
  • Yale Cancer Center/Smilow Cancer Hospital