Health care initiative helps patients with chronic diseases articulate to providers what matters most in their dying days
Recent studies have collectively led to a renewed focus on end-of-life preferences, and this discussion is proving increasingly relevant to providers in the emergency department. A study from the University of California San Francisco, published in Health Affairs, demonstrates that half of older Americans are seen in the emergency department in the last month of life.1 Most are admitted to the hospital, and many die there despite what we know about the wishes of older patients with chronic disease.
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ACEP Now: Vol 33 – No 01 – January 2014The Conversation Project in conjunction with The Institute for Healthcare Improvement just launched an initiative to help patients begin this conversation with their health-care providers.
It asks patients to articulate what matters most to them at the end of life. It also asks patients to articulate their wishes through “Where I Stand” scales. These scales acknowledge individual differences in what patients want and expect at the end of life. Using a five-point Likert scale, the material provided in The Conversation Project packet asks patients to express both how much information they would like to receive and how much care they would want at the end stages of life. Patients can choose “I want to live as long as possible no matter what” or “Quality of life is more important to me than quantity” as the extreme choices along the scale. They can choose “I wouldn’t mind being cared for in a nursing facility” versus “Living independently is a huge priority for me.”
Why should EPs take up the end-of-life banner? Ninety-six percent of decedents were admitted through the ED in their final 108 days.
The material also allows patients to choose how involved they want family members to be and who those involved persons should be. Patients are even encouraged to select a time for the end-of-life discussions and the setting where they would be most comfortable having them (ie, “At the kitchen table,” “On a long drive,” or “At my place of worship”).
It even offers suggestions for scripting that would introduce the subject to family members and talking points for providers.
The entire packet is written in lay terms and does not require a high level of medical literacy. Finally, the packet helps patients to record these wishes in the documents that are commonly used: the advanced directive, the health-care proxy, and the living will. The Conversation Project packet even clarifies those entities, which often confuse patients and families.
Why should emergency physicians take up the end-of-life banner? One study showed that 96 percent of decedents were admitted through the emergency department in the last 108 days of their lives.2 Another study noted that 77 percent of patients had their first documented discussion of end-of-life preferences three days before death, and 82 percent of patients with critical care rendered in the hospital left the hospital without advanced directives being articulated.
There is a performance gap in this important aspect of care. There is a growing body of evidence that suggests when it comes to the end of life, patients “can’t always get what they want.” Well, maybe they should, and emergency physicians are best positioned to facilitate these discussions.
Shari Welch, MD, FACEP, is a practicing emergency physician with Utah Emergency Physicians and a research fellow at the Intermountain Institute for Health Care Delivery Research. She has written numerous articles and three books on ED quality, safety, and efficiency. She is a consultant with Quality Matters Consulting and her expertise is in ED Operations.
References
- Smith AK, McCarthy E, Weber E, et al. Half of older Americans seen in emergency department in last month of life; most admitted to hospital, and many die there. Health Aff (Millwood). 2012;31:1277-1285.
- Rosenwax LK, McNamara BA, Murray K, McCabe RJ, Aoun SM, Currow DC. Hospital and emergency department use in the last year of life: a baseline for future modifications to end-of-life care. Med J Aust. 2011;194:570-573.
- Gaw A, Doherty S, Hungerford P, May J. When death is imminent – documenting end-of-life decisions. Aust Fam Physician. 2012;41:614-617.
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