INDIANAPOLIS – In one of the first studies to test the utility of mindfulness to support advance care planning by adult cancer patients and their family caregivers, researchers from Regenstrief Institute and Indiana University have found that mindfulness showed promise in improving quality of life and advance care planning outcomes in patients and their family caregivers coping with advanced cancer.
Both patients with poor cancer prognoses and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, notes clinical psychologist and study senior author Shelley Johns, PsyD, of the Regenstrief Institute, the Indiana University School of Medicine and the Indiana University Melvin and Bren Simon Comprehensive Cancer Center. "Drawing upon many years of working in clinical practice with adults facing advanced cancer and their family caregivers, I had noticed considerable avoidant coping that was preventing patients from sharing their thoughts, feelings, and care preferences with their family caregivers. This avoidance seemed to be increasing stress for both patients and caregivers and interfering with quality of life. When we guided patients and family caregivers in mindfulness practices and offered skills they could use to have these tender conversations with greater ease, they became more receptive to making decisions."
Mindfulness emphasizes paying attention to the present moment with an attitude of openness, compassion and interested curiosity accomplished through meditation and other exercises to manage stress.
"Mindfulness is about noticing what's here so we can choose the wisest response and hopefully be less emotionally reactive," said Dr. Johns. "Mindfulness practices help individuals increase their mindfulness muscle, so to speak. Anything that we do in our life, from brushing our teeth to having a conversation with a loved one, can be done with mindful focus, with mindful attention."
In the randomized controlled trial, mindfulness training tailored to the needs of cancer patients improved psychological well-being and self-confidence for advance care planning for patients. For caregivers, mindfulness training supported improvements in quality of life at follow-up.
The two-arm study blended mindfulness skills training with advance care planning education to address emotional barriers to advance care planning and contrasted it with usual care which included no coping training or tools. To help patients clarify their values and goals regarding the kind of care that they want to receive, if and when their disease progresses, and to help caregivers if the patient becomes unable to make medical decisions, the intervention was delivered in six two-hour group sessions enabling patients and caregivers to interact and share experiences. These study participants also received resources to practice mindfulness at home.
"Medical care is understandably focused on the patient -- and family caregivers often feel left out. In this study, caregivers and patients were both center stage and I think that's why the caregivers of these patients, as well as the patients themselves, were so interested in mindfulness," said Dr. Johns. "The caregivers were looking for tools, resources, skills and opportunities to learn something that could be of use to them in supporting their family member who had a diagnosis with a poor prognosis."
Participants were 55 family caregivers and 55 adults with advanced solid malignancies including breast, prostate, lung and colorectal cancers, many of whose long-term treatments were no longer achieving desired results. " Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers " is published in BMC Palliative Care.
"Mindfulness can help adults be more fully focused on the present and can address the emotional barriers to advance care planning, bringing peace of mind knowing their medical decisions are known to both their caregiver and their medical team," said study corresponding author Catherine Mosher, PhD, professor of psychology at the School of Science at IU Indianapolis, a Regenstrief Institute affiliate scientist and a researcher at the IU Simon Comprehensive Cancer Center. Dr. Mosher's research focuses on psychosocial approaches to improving symptom management and quality of life for adults with cancer and their family caregivers.
"The take-home message from this study is that mindfulness practices can be a supportive resource for dealing with the realities of life that come with advanced stage cancer, whether you are the patient or the family caregiver," said co-author Susan Hickman, PhD. "Ongoing conversations about goals, values and preferences are essential to help prepare patients and their caregivers for end-of-life decision-making." Dr. Hickman is the director of the IU Center for Aging Research at Regenstrief Institute, the Yvonne Pettinga Chair of Aging Research at the IU School of Medicine and a nationally respected leader in advance care planning.
This study was supported by Indiana University Health, P.I. Shelley Johns, PsyD [grant number 0963]; Walther Cancer Foundation, P.I. Shelley Johns, PsyD [grant number 0175]; and the National Cancer Institute, P.I. Victoria Champion, PhD, MSN, BSN, RN, PhD [grant number K05CA175048]. Dr. Champion is a Regenstrief Institute affiliate scientist.
Authors of the study and their affiliations, as listed in the publication, are:
Catherine E Mosher 1 , Kathleen A Beck-Coon 2 , Wei Wu 1 , Ashley B Lewson 1, Patrick V Stutz 2 , Linda F Brown 2 , Qing Tang 2 , Paul R Helft 2 ,3, 4 , 5 , 6 , Kristin Levoy 6 , 7 , 8 , Susan E Hickman 6,7, Shelley A Johns 2 , 5 , 8
- 1Department of Psychology, Indiana University Indianapolis, Indianapolis, IN, 46202, USA.
- 2Indiana University School of Medicine, Indianapolis, IN, USA.
- 3Charles Warren Fairbanks Center for Medical Ethics, Indiana University Health, Indianapolis, IN, USA.
- 4Indiana University Indianapolis Research in Palliative and End of Life Communication and Training Center, Indianapolis, IN, USA.
- 5Indiana University Melvin and Bren Simon Comprehensive Cancer Center, Indianapolis, IN, USA.
- 6Department of Community and Health Systems, Indiana University School of Nursing, Indianapolis, IN, USA.
- 7Indiana University Center for Aging Research, Regenstrief Institute, Inc., Indianapolis, IN, USA.
- 8Center for Health Services Research, Regenstrief Institute, Inc., Indianapolis, IN, USA.
Shelley A. Johns, PsyD
In addition to her role as a research scientist with the William M. Tierney Center for Health Services Research at Regenstrief Institute, Shelley A. Johns, PsyD, is a board-certified clinical health psychologist for the Eskenazi Health Palliative Care Program. Dr. Johns also serves as an associate professor of medicine and is a Walther Scholar in Psycho-Oncology at Indiana University School of Medicine. She also serves as a clinician-scientist at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center.
Susan Hickman, PhD
In addition to serving as the director and a research scientist with the Indiana University Center for Aging Research at Regenstrief Institute, Susan Hickman, PhD, is a professor at IU School of Nursing, a professor of medicine and the Cornelius and Yvonne Pettinga Chair of Aging Research at the IU School of Medicine and the co-director of the IU Research in Palliative and End-of-Life Communication and Training (RESPECT) Signature Center.
