Thoughts about Dying in America : Enhancing the impact of one’s life journey and legacy by also planning for the end of life

Abstract

This Perspective offers a summary of the recommendations in the Institute of Medicine report Dying in America. How we die is a deeply personal issue that each of us will face. However, the approach to end-oflife (EOL) care in the United States needs improvement. Too frequently, healthcare delivery is uncoordinated and has many providers who are not adequately prepared to have meaningful conversations about EOL planning. This is amplified by payment systems and policies that create impediments, misunderstanding, and sometimes misinformation. Dying in America made five recommendations to improve quality and honor individual preferences near the EOL beginning with making conversations with providers and families something that occurs during various phases of the life cycle and not just when one is facing serious illness or possible EOL. It was recommended (i) that public and private payers and care delivery organizations cover the provision of comprehensive care that is accessible and available to individuals on a 24/7 schedule; (ii) that professional societies and other entities establish standards for clinician patient communication and advance care planning and that payers and care delivery organizations adopt them; (iii) that educational institutions, credentialing bodies, accrediting boards, state regulatory agencies, and care delivery organizations establish palliative care training, certification, and/or licensure requirements; (iv) that public and private payers and care delivery organizations integrate the financing of health and social services; and (v) that public and private organizations should engage their constituents and provide fact-based information to encourage advance care planning and informed choice. Whether you are probing the fundamental biological, chemical, or physical dimensions of life, seeking to understand the psychosocial factors impacting behavior or the forces that compose and define our planet or the cosmos, as a scientist you are likely thinking about how you might expand or deepen the scope of your research. You are probably not thinking about how the limits of your life will impact your discoveries. However, at some point and for each of us, our work (and life) will end, sometimes abruptly and without warning or more commonly slowly in a spiral of compromises and transitions. Ultimately, We All Will DieDying in America: Improving Quality and Honoring Individual Preferences Near the End of Life is the title of a report conducted by the Institute of Medicine (IOM) (now the National Academy of Medicine) that was published at the end of 2014 (1). I served as the cochair of the IOM Committee that produced this report and was invited to write this Perspective about it.Whether and how we plan for our own eventual death has important implications for us individually, and as members of families and communities. This awareness and the conversations that ensue can be as important to our legacy as the contributions we make personally and professionally. Indeed, a lack of planning and commun...

The contribution of a MOOC to community discussions around death and dying

“…Social initiatives such as death cafes, health promoting palliative care, death education and compassionate communities are all examples of strategies that seek to ensure individuals and systems are aware of, and responsive to, end-of-life issues [ 13 ]. Many governments actively support palliative care programs and death awareness initiatives that address the anticipated increases in death and dying [ 14 , 15 ].…”

Can Exposure to Online Conversations About Death and Dying Influence Death Competence? An Exploratory Study Within an Australian Massive Open Online Course

“…Building community engagement with conversations about death and dying could encourage active involvement in decision-making, making end-of-life wishes known, and acceptance of death as an inevitable part of the life cycle (Chapple et al., 2017; Swerissen & Duckett, 2015; URBIS, 2016). Governments in many countries such as the United Kingdom and Australia actively support palliative care and advance care planning as well as death awareness initiatives such as death cafes and compassionate communities to improve community appreciation of dying and death as a normal part of the life continuum (Abel & Kellehear, 2016; Clark et al., 2017; Kellehear, 2016; Pizzo, 2016; URBIS, 2016). By being able to discuss death and dying in our families, communities and with our health-care providers, it is presumed we can develop the skills and competence to enable our own decision-making and support for others in our family and community (Noonan, Horsfall, Leonard, & Rosenberg, 2016).…”

Leaving a lasting legacy: A scoping review of ethical wills

“…Through this review, we identified 14 articles that discussed using the ethical will to address mortality or attitudes about death, which indicate that reflecting on meaning in life and articulating values may provide the writer a sense of life completion (Barnes et al, 1997; Wheeler and Farnsworth, 2000; Baines, 2003, 2004; Cole and Kloberdanz, 2003; Frank, 2003; Gessert et al, 2004; Alexander, 2006; Shultz, 2006; Hicks, 2008; Falkner, 2009; Williams et al, 2010; Martin, 2015; Grewe, 2017). The Dying in America report recommends patients, families, and providers prepare for death by having conversations throughout the life cycle, not just near the end of life (Pizzo, 2016). As the ability to plan and communicate effectively in the final days is not a guarantee, it is beneficial for individuals to begin planning for the end of life once they have an awareness of their mortality, which often occurs through the process of aging (Doka, 2015).…”