Plot
The patient’s brother is unhappy with his sister’s care, lack of healthcare clinician communication, and handling of his sister’s deteriorating clinical status. Over the past 6 months the patient has rapidly progressed from initial diagnosis of colon cancer to lung and liver metastases with ascites. The brother has been very agitated and abusive with medical staff and hospital employees. He expressed concerns that the staff did not treat his sister with religious sensitivity. His current complaint is that the hospital and doctors are preventing his 53 year old sister from getting the nutrition she needs, due to costs and the parenteral nutrition shortages, which he read about on the internet. The patient’s brother asked to speak with the hospital administration about his complaints.
The chief medical officer and chief nursing officer seek to understand the perceived problems of patient care issues from the brother’s perspective. Unfortunately the patient is in the dying process. This will need to be conveyed to her brother.
The Cast
Script Writers
Albert Barrocas, MD, FACS, FASPEN
Angela DiTucci, RD, LDN
Eric Frankel, MSE, PharmD, BCNSP
Denise Baird Schwartz, MS, RD, CNSC, FADA, FAND, FASPEN
Carole Thompson, MSc, RD, CNSC
Mary Pat Turon-Findley, MS, RD, LD
Eric, in ACT 1 you play the part of the upset family member. As a nutrition support professional, I greatly appreciate your insight in trying to understand what a patient goes through with a medical therapy, such as having a feeding tube placed in yourself.
You recently stated, “It is important that the patient and/or their family understand that this is their decision and that an advance directive to someone designated to have the healthcare power of attorney is a way of empowering the patient and their family to be the ones to make these decisions.”
Where should non-healthcare professionals obtain information about medical nutrition therapies to best understand the burdens/risk versus benefits in the shared decision-making process with their healthcare providers?
No one is better informed about the burdens, risks and benefits of nutrition therapies than NSS team members. The attending physician needs to be engaged and everyone involved in a patient’s care needs to be on the same page to avoid conflicting and confusing information provided for the family. This is challenging in an institution and more so in home care. That said, you will find many resources on the internet. Review each yourself prior to recommending them. In my institution, we have a Palliative Care team who can join in this discussion. Patients are not abandoned to DNR/DNI, Palliation and comfort care concepts are explained. We also have a “No One Dies Alone” (NODA) program staffed with volunteers designed for patients with limited family support.
In addition to identifying resources on the burdens/risk versus benefits of medical nutrition therapies to enhance the shared decision-making process, these three websites listed below help open up conversations that are invaluable to healthcare clinicians, individuals and their family members.
• Consider the Conversation (www.considertheconversation.org): Consider the Conversation uses film to inspire person-centered care. The goal is to stimulate cultural change that results in end-of-life care that is more person-centered and less system-centered.
• The Conversation Project (www.theconversationproject.org): Developed in collaboration with Institute for Healthcare Improvement, this project aims to have every person’s end-of-life preferences expressed and respected. The project provides a starter kit to help gather one’s thoughts and then have conversations with a loved one on wishes for end-of-life care.
• National Healthcare Decisions Day (www.nhdd.org): National Healthcare Decisions Designated annual day (April 16) with the goal of inspiring, educating, and empowering the public and providers about importance of advance care planning.
Our patients need to know more about the legal and ethical issues of nutrition and feeding as part of their medical treatment.
Encourage your patients to be proactive! They need to know it is their right to request or refuse feeding/nutrition/hydration. Encourage them to make known their wishes and preferences about food/nutrition and tube feeding as part of their advanced directive or durable power of attorney.
Registered dietitians are a part of the interdisciplinary healthcare team and provide nutritional recommendations including the cultural, religious, and social needs of the individual.
Wonderful work, and thanks for thinking of this in connection to National Healthcare Decisions Day. We need more creative initiatives like this. Keep up the great work.
Nathan
Founder/Chair
National Healthcare Decisions Day
April 16
http://www.nhdd.org