End of Life Care and Patient-Centered Nutrition Support
by Mary Ellen Posthauer RDN, CD, LD, FAND
Recently there have been numerous articles and webinars focusing on the methods health care professional can employ to effectively communicate and engage in end of life conversations with patients receiving palliative and/or hospice care.
What Is Patient-Centered Care?
As health care professionals we have an ethical obligation to protect life and relieve suffering. However, the goal of the health care team is also to provide appropriate care that respects the wishes of the individual. Patient-centered care is defined as care that is respectful of the individual person and responsive to his or her preferences, needs, and values while ensuring that patient values guide all decisions. The team approach for patients receiving palliative/hospice care shifts from managing just the disease and the accompanying wounds back to the patient and their caregivers.
As a member of the interprofessional team, the registered dietitian nutritionist is responsible for making recommendations about providing, withholding or withdrawing nutrition and hydration based on individual cases. The position of the Academy of Nutrition and Dietetics on the ethical and legal issue of feeding and hydration states “it is the position of the Academy of Nutrition and Dietetics that individuals have the right to request or refuse nutrition and hydration as medical treatment.” Since eating and drinking are considered essential for survival, conflicts often occur when family/caregivers demand IVs or an enteral feeding for their family member at end of life. When the patient does not have advance directives indicating their wishes for feeding and hydration, the interprofessional team has the responsibility to explain the risks and benefits associated with the medical treatment they are requesting.
Communicating Options for End of Life Care
In my practice in long-term care facilities, I encounter families who request enteral feeding for an individual with advanced dementia and pressure ulcers. In this instance, I explain the decline in appetite accompanied by weight loss and increased difficulty of staff to hand feed their loved one is part of the end of life process. As part of patient-centered care, we discuss that while appetite decline is common with a terminally ill individual, it does not reduce quality of life. I explain that withholding or minimizing hydration can have the desirable effect of reducing alarming oral and bronchial secretions, and reduces cough from diminished pulmonary congestion. The continued decline in oral intake leads to a peaceful, comfortable death. The presence of a family member at the bedside often provides the comfort that the patient desires.
The physician and the nursing team clarify that while dementia is a terminal illness, the interprofessional team is dedicated to proving comfort care for the patient and continued support for the family/caregiver.
Join us in Orlando Florida at the 5th Palliative Wound Care Conference on May 14-16,2015. Log on to the website at www.palwcc.org and register for this important conference.
Barry MJ, Edgman-Levitan S. Shared Decision Making – The Pinnacle of Patient-Centered Care. N Engl J Med. 2012;366(9):780-781.
O’Sullivan Maillet J, Baird Schwartz D, Posthauer ME. Position of the Academy of Nutrition and Dietetics: Ethical and legal issues in feeding and hydration. J Acad Nutr Diet. 2013;113:828-833.
About The Author
Mary Ellen Posthauer RDN, CD, LD, FAND is an award winning dietitian, consultant for MEP Healthcare Dietary Services, published author, and member of the Purdue University Hall of Fame, Department of Foods and Nutrition, having held positions on numerous boards and panels including the National Pressure Ulcer Advisory Panel and the American Dietetic Association's Unintentional Weight Loss work group.
The views and opinions expressed in this blog are solely those of the author, and do not represent the views of WoundSource, Kestrel Health Information, Inc., its affiliates, or subsidiary companies.