ADVANCED CARE PLANNING FOR NATIONAL HOSPICE AND PALLIATIVE CARE MONTH
Special Feature Health & Exercise Forum with Geisinger Commonwealth School of Medicine the 3rd Monday of every month!
Glen Digwood, DO, Assistant Professor of Medicine at Geisinger Commonwealth School of Medicine
Dr. Digwood was born and raised in Taylor, PA., attended Riverside High School, Ursinus College and Lake Erie College of Osteopathic Medicine. He completed Internal Medicine Residency at Scranton-Temple Residency Program and subsequently completed clinical fellowship in Hospice and Palliative Medicine at North Shore University Hospital in Manhasset, NY. Currently he serves as the director of Palliative Medicine for Geisinger's Northeast region and is a assistant professor of Medicine at the Geisinger Commonwealth School of Medicine.
November is National Hospice Month! Each November, the community of hospice and palliative care professionals celebrates National Hospice Month. Although, at first glance, spotlighting the concept of death and dying may seem a bit gloomy, it’s actually the concept of quality of life and the focus on living that is truly being celebrated.
It is true that hospice serves those patients and their families who are on the journey of a serious or terminal illness. But as any hospice professional from the nurse to the social worker to the volunteer to the pastoral counselor will attest------the focus is ALWAYS on the value of life being maintained and the quality of living for each and every patient.
This column, written by guest author Dr. Glen Digwood, hopes to raise the level of awareness regarding the importance of advanced care planning.
Have you ever wondered what choices would be made for you if you could not make them yourself? Whether you are young, old, sick or healthy, it is important to discuss and clarify your goals, values, and preferences, as they relate to healthcare, in advance. Advance Care Planning (ACP), as defined by the National Hospice and Palliative Care Organization, is “making decisions about the care you would want to receive if you become unable to speak for yourself”. An additional consensus definition of ACP has been presented to clarify the process. ACP is intended to support adults in understanding and sharing personal values, life goals, and preferences regarding future medical care so that care is consistent with their values.
There are two major components of creating an Advance Directive. First, the naming of a surrogate decision maker. This could be done by declaring a Healthcare Proxy or Power of Attorney (POA) for Healthcare. This is the person who will be acting on your behalf should you lose capacity to do so yourself. After choosing this person it is crucial to discuss your wishes about medical care and quality of life with them. Secondly, the piece that this article speaks more to, is the documenting of preferences. This is most commonly done through completing a Living Will. This document specifies what type of medical treatments you would or would not want in differing circumstances.
It would seem to make sense that we should want our wishes known, right? Surprisingly, the rates of completion are quite low. Only about one in three U.S. adults have any type of advance directive completed. The result is that when you get sick your healthcare team is often left to figure out your goals and preferences in the most heightened emotional time. Even more surprising should be that those who are the sickest in our population have even lower rates of completion compared to the healthier parts of our society. The importance of ACP has been specifically demonstrated in studies of elderly populations. Those who engage in ACP are “approximately three times as likely to have the end of life wishes known and followed, and their family members suffer significantly less stress, anxiety, and guilt after their loved one’s death.
Why have ACP completions rates been so low historically? How do we change our views on ACP and improve completion rates, or at minimum, promote conversation about “what matters most”? The first step likely lies in changing how our society views ACP. Upon hearing the term, people often picture mounds of legal paperwork loaded with “I do want, or I do not want” checkboxes. This legalization of healthcare preferences, although vitally important, is a major hurdle to those of limited means and access to legal professionals. Additionally, this formal paperwork completion also connotes a certain level of finality to these decisions. In contrast, ACP should be thought of as a longitudinal and dynamic conversation that can change over time as aging occurs and new medical conditions arise. These conversations should happen regularly both with an individual’s healthcare provider and loved ones. The best time to develop your advance directive is before you’re sick. This allows for time to develop a clear understanding about your options. It also provides time for you to communicate your wishes to your loved ones and your doctor.
If you are confused and overwhelmed by the alphabet soup of all of this (ACP, POA, POLST, etc.) innovative tools exist to promote conversation around goals, values, and preferences. Initiatives like the The Conversation Project, documents such as Five Wishes and conversation games such as Hello (Common Practice LLC) aim to enhance conversation and limit the taboo nature of this issue. These are not meant to replace the legal documents to which we are accustomed. Instead, they serve to enhance conversation by, hopefully, removing some of the stigma and taboo nature to these conversations. To this point, advance directives are only as good as the discussions which precede their execution and use. Remember, it is never too early to start the conversation.
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This article is not intended as a substitute for medical treatment. If you have questions related to your medical condition, please contact your family physician. For further inquires related to this topic email: firstname.lastname@example.org.
Paul J. Mackarey PT, DHSc, OCS is a Doctor in Health Sciences specializing in orthopaedic and sports physical therapy. Dr. Mackarey is in private practice and is an associate professor of clinical medicine at Geisinger Commonwealth School of Medicine.