It’s a conversation no one wants to have with their loved ones. If you are at the end of your life and you can’t make decisions for yourself, who would you want to help make decisions for you? Does your surrogate decision maker understand their role? Do they understand what you as a person would want? Have you expressed your goals of care when faced with severe chronic illness? Are you and your family aware of palliative care options and the role they may play in the relief of symptoms when a cure is not possible?
While these discussions are often uncomfortable or difficult to initiate, making care or treatment preferences known to family and health care providers decreases the chance of unwanted interventions and increases the chance for a greater quality of life for patients. This is why OSF HealthCare launched OSF Care Decisions, an advance care planning (ACP) model that uses trained facilitators to help patients and their families have these discussions and complete the necessary paperwork to designate a Health Care Power of Attorney (HCPOA). Our experience is that only when combined with a deeper understanding do the forms really help families participate in collaborative decisions with their care team.
Jump Simulation, a part of OSF Innovation, trains our ACP facilitators to discuss options with patients using standardized patient actors. This work has increased the knowledge, confidence, and competence of those responsible for facilitating ACP, according to a Jump Simulation study published in the Journal of Palliative Medicine in 2017.
Our research team expanded our efforts by studying whether ACP leads to improved documentation of a patient’s end-of-life wishes. The results of the collaborative study which included team members from Jump Simulation, Healthcare Analytics at OSF, the Division of Supportive Care at OSF, the Center for Outcomes Research at the University of Illinois College of Medicine Peoria, and Illinois Wesleyan University was recently accepted for publication in a 2018 issue of the Journal of Palliative Medicine.
The Study and Results
Information gathered from an ACP session can include answers to a variety of questions families may face if they are left to make health care decisions for their loved ones. Among them include preferences on pain control, spiritual support, and perhaps most importantly, who you want as a surrogate decision maker if you are unable to make decisions. Patients can also fill out a Provider Orders for Life Sustaining Treatment (POLST) form which helps guide resuscitative efforts if they are near the end of their life.
Our study compared the patient charts of 325 deceased patients who went through ACP in an out-patient setting with 325 deceased patients who did not go through the ACP process. We looked at whether these patients had health care powers of attorney designated and if they had POLST forms on file in the last 12 months of life.
Our research found that 98.5% of patients who completed ACP chose a HCPOA while only 75% of those without ACP made this designation. Meanwhile 53% of patients who went through ACP had POLST forms while 45% of those without ACP had completed the forms. Using Accountable Care Organization (ACO) data for OSF HealthCare, we also found that those who had ACP had fewer in-patient admissions and in-patient days. ACP was associated with overall costs that were $9500 lower.
Planning Now Can Reduce Stress Later
As an emergency medicine physician, I’ve witnessed time and time again the conflict, guilt and anxiety that takes place within families who are unsure of what to do when major health care decisions need to be made for their loved ones. It’s impossible to predict for any one individual what health care decisions may need to be made, but we do know the general trajectory in the setting of particular chronic diseases. It’s important to ensure families aren’t left to shoulder the burden of making choices without deeper understanding and guidance.
Give your family the gift of peace of mind by walking through the ACP process with an OSF Care Decisions facilitator. More information is available here.