Are you one of the 92% of Americans who believe that discussions regarding end of life issues are important? This statistic is from a 2018 study by The Conversation Project, an organization formed in 2010 to help transform American culture in relation to the stigma surrounding end of life Issues. National Healthcare Decisions Day is one of the initiatives utilized by The Conversation Project in working toward this goal.
National Healthcare Decisions Day (NHDD) is held annually on April 16th. It was started in 2008 by Nathan Kottkamp, a Virginia based attorney whose focus is health care law and privacy/data security. Management of NHDD was transferred to The Conversation Project in 2016, since the objectives of both NHDD and the organization are closely aligned.
Although death is a common occurrence in American entertainment such as movies and video games, and is all too evident in daily news reports (especially now during the pandemic); Americans prefer not to think about what the last stages of their own lives may entail. This head-in-the-sand approach by both individuals and health care providers has resulted in a lack of preparation for reaching old age, or the possibility of a catastrophic health event or medical diagnosis earlier in life.
It is difficult to make any type of decision under stressful circumstances and without adequate information about the realistic impact of available choices. The challenges increase when decisions must be made for someone else because that individual is unable to communicate his/her own preferences. In situations related to medical care and treatment, decisions often become driven by statistics – perceived success versus failure or survival versus death.
Perceived success or failure of a course of medical treatment is very individualized. Many people may assume that a physician’s prognosis of success means that their lives will look the same or better after the prescribed treatment. Often times, reality is very different. In order to avoid this scenario, an important question for individuals to ask their health care providers is “What will my life look like if I do or do not receive this care?” Providers must be careful to avoid painting a rosy and potentially unrealistic picture, which is hard when their training focuses primarily on healing an injury or illness. When full recovery is not possible, providers usually haven’t been taught how to walk alongside patients and help them live their best lives according to each patient’s own individual goals and desires.
Have you considered your own preferences for care in various situations? Have you shared your thoughts with those who are closest to you? The same study referenced in the first paragraph of this article determined that despite a belief about the importance of end of life conversations, only 32% of Americans have had this type of discussion.
National Healthcare Decisions Day is designed to encourage Americans to consider some of the sensitive and personal issues which surround end of life situations, share their thoughts and feelings about these issues with others, and assist health care providers to recognize and respect their patients’ wishes for end of life care. The Conversation Project provides a variety of resources on their website (www.theconversationproject.org) to assist individuals and families to begin their dialogue and navigate this subject.
Two important considerations to keep in mind regarding end of life conversations are that they should not be a “once and done” event, and that someone can always change his/her mind. Our perceptions about the care we believe we may or may not want could be altered by future conditions which we cannot fully anticipate or understand until we are actually experiencing them. The value of conversations which are held now is that they allow for a more comfortable environment and provide a foundation for future communication and decision-making.
Although April 16 has passed, the current coronavirus pandemic may create a greater sense of urgency for advance care planning. In addition to the resources mentioned earlier, attorney Patrick Cawley of Keystone Elder Law can help you begin your conversations with an opportunity to draft a FREE Health Care Power of Attorney and Living Will (PA residents only). A Health Care Power of Attorney document allows you to appoint another individual to help advocate for your care if you cannot speak for yourself. A Living Will sets forth guidelines for your Power of Attorney and health care team in certain end of life situations. To get started, call or email Patrick today at 717-502-2213 or Patrick@KeystoneElderLaw.com.
Karen Kaslow, RN, BSN