Opening Commentary: We Have to Talk About the “D” Word

As health promotion professionals, we spend the vast majority of our time focused on how to optimize well-being and promote vitality. Our guiding purpose and clarion call is living well. Perhaps it is natural then that we are at times reluctant to consider our potential role in ensuring a good death ¹ —or in helping individuals navigate the grief that follows the death of a loved one. Among the stark realities brought to the forefront by the COVID-19 pandemic is how urgent it is for us to do so. In fact, the Lancet Commission on the Value of Death recently put forth a reimagined vision for death and dying guided by five principles, including a normalization of conversations about death and dying and enhanced networks of support for dying and for bereaved individuals. ²

Among the most important conversations about dying is advance care planning.^3,4 Engaging in advance care planning (to explore and define one’s preferences for end-of-life treatment) increases the likelihood individuals will receive care aligned with their values.^5,6 Yet the majority of adults have not done so.^4,5 In this issue of Knowing Well, Being Well, Attorney Barbara Zabawa eloquently outlines the link between advance care planning and well-being and explains the ways in which—when it occurs—advance care planning can address social determinants of health. In addition to the numerous resources she recommends, the American Bar Association’s Commission on Law and Aging has created a Toolkit for Health Care Advance Planning. ⁷ The need for advance care planning is underscored by the emergence and meteoric growth of organizations such as The Conversation Project, an initiative of the Institute for Healthcare Improvement, ⁴ and End Well, ⁸ a non-profit organization committed to transforming how people contemplate, discuss, and plan for the end of life. In an interview in this issue, End Well’s founder, Dr Shoshana Ungerleider, tells the organization’s origin story. She also details the extensive resources End Well offers to assist individuals, caregivers, and health care providers engage in the essential work of clarifying values and goals to inform end-of-life planning. Dr Ungerleider asserts that ending well is a measure of living well. Other organizations, such as ACP Decisions, provide educational videos to assist individuals of varying levels of health literacy to make informed decisions about their end-of-life care. ⁹ PREPARE for your care, ¹⁰ an interactive, online program that combines video stories with plain language, state-specific resources for advance directives, has been demonstrated effective in clinical trials with diverse populations. ⁵ Some states, including Arizona, ¹¹ have created mechanisms for residents to integrate their advance directives into a statewide health information exchange.

Arguably as important as specifying desires for end-of-life care is making explicit one’s wishes for after death. And there are also substantial opportunities for improvement in the extent to which those wishes are documented. The most recent National Survey of Organ Donation Attitudes and Practices, for example, indicates that although more than 90% of Americans support organ donation, only 50% ¹² are registered organ donors. And although the pandemic spurred some Americans to create a will, a survey of 2000 adults in the U.S. in February of 2022 revealed that less than half had one. ¹³ Other reports are even more dismal, with some sources noting that nearly 70% of Americans have no will, living trust, or estate plan. ¹⁴ Common misconceptions and barriers include an assumption that one doesn’t need a will because they have few assets, aren’t married, or don’t have children, as well as concerns about the complexity or cost of creating a will.^14,15 Wills are, however, important for everyone—and need not be complicated.^15,16

There are opportunities for employers to play a role in facilitating dialogue on these often avoided topics. The Health Resources and Services Administration invites workplaces to join their national campaign to increase organ and tissue donors (i.e., “DoNation partners”). ¹¹ Some experts have recommended that estate planning should be an employee benefit. ¹⁷ In the absence of that option, employee assistance programs can be called upon to assist employees with navigating the legal considerations of creating a will and other estate planning topics (e.g., trusts). Organizations can also highlight “make-a-will month” in August.

While advance care planning and informed estate planning may ease the burden on bereaved loved ones, there have been numerous calls to rebalance and bolster care for grieving individuals.^2,3,18 According to some estimates, at any given time, 57% of employees are grieving the loss of someone close to them. ¹⁹ Dr. Deborah Levesque and her co-authors comprehensively review the literature on grief in the workplace and describe how digital, text-messaging solutions can provide ongoing support to employees experiencing grief. Managers can also play an important role in supporting grieving team members.^18,20 In a recent podcast interview, ³ Dr Ungerleider emphasized how crucial it is for companies to create a culture that is thoughtful about how to support grieving employees. Later in this issue, Eddy et al. provide guidance about how employers can do just that.