When I Must Speak for You, How Will I Know?

Keywords: Medico-legal research, Advanced directives, written directives, end-of-life care, Conversation Project, advanced care planning, Patient Self Determination Act, Health Care Proxy Act, health care policy

Title: When I Must Speak for You, How Will I Know? Advanced Care Planning Conversations Can Illuminate When the Answer is Yes and When it is No
Article by Laura Wirth in conversation with Deborah Waldrop, UB School of Social Work

Only one-third of the US population has completed advanced care directives to inform care decisions if they cannot speak for themselves in a medical emergency. What causes people to avoid these critical conversations? Research by  Deborah Waldrop demonstrates the importance of holding “the conversation” and the resolve or even solace that comes when a surrogate decision-maker can uphold a dying family member’s wish. Waldrop considers the complex aspects of communication about living with and dying from a serious illness, including how talking about end-of-life wishes can be a powerful and meaningful experience that brings comfort to both those facing end-of-life care and their loved ones. 

The COVID-19 pandemic has illuminated the vital need for honest conversations about end-of-life planning and the completion of written directives (LaMonica, 2021). Ventilator shortages, the rising death toll attributed to COVID-19, and comorbidities that disproportionately impact older adults (especially those in long-term care settings) paint a grim picture. These recurring themes in the media can invoke feelings of hopelessness and dread that might ultimately decrease a person’s desire to approach conversations about choices in care. Meanwhile, messages of hope and warmth radiate from scholars like Waldrop and health care professionals who work to combat the media’s ominous messages. These scholars and providers call for a change in practice that will ultimately inspire people to connect on a deeper level with their loved ones and hold meaningful conversations around end-of-life care. 

According to Waldrop, “new and improved models to support families in having conversations about end-of-life wishes have continued to be developed and promoted.” One example is The Conversation Project, initiated by Ellen Goodman. 

Waldrop's recent Baldy Center supported research included interviews of caregivers of people who had died in hospice care. They asked about how the advance care planning process had informed their experiences as decision-makers at the end of life. Waldrop and her team trained social workers and chaplains on using the Serious Illness Conversation Guide and adapted it for hospice utilization as part of the project. Then, they interviewed the second set of caregivers who had had the opportunity for a directed, values-based conversation. 

“We learned that indeed what happens before death influences caregivers’ memories and adaptation in bereavement. Ideas about what is wanted can change as the symptoms of a late-stage illness intensify, sometimes rendering previously completed written documents meaningless and leaving surrogate decision-makers without a plan. Memories of uncertainty, feelings of guilt or inadequacy, and incongruent experiences with the person’s expressed wishes had detrimental effects on caregivers’ well-being in bereavement. We learned that the importance of how conversations are conducted—the level of honesty and transparency—and attention to what is understood cannot be overstated.” 

Recently, WORLD Channel featured Death is But a Dream, an important and timely documentary film illuminating the end-of-life experience as written in Dr. Christopher Kerr’s book, Death is But a Dream: Finding Hope and Meaning at Life’s End.  Waldrop worked with Kerr during research projects that involved Hospice and Palliative Care, Buffalo.  When interviewed for this article, Kerr offered his opinion on why advanced care planning is important and offered some reflections about his time working with Waldrop. Kerr stated, “Because of the outcomes of all aspects of living that one should have some determination of, it’s how their life ends, and the only way to align one’s wishes with outcomes is to lay them out clearly in the form of advanced directives. Otherwise, you fall within the assembly line of medical care, for which you may not want to be a participant, and you’ve lost your voice. Of course, the other injury is that your family is given a burden that really shouldn’t be theirs to assume, which is what choices. And so often, what we see is that they’re made to feel responsible to the point that they feel as though they’re playing God. More often than not, the disease makes the decision, but that’s not how it’s perceived. So, I think without advanced directives, we’re taking away autonomy, self-determination, and again, the outcome may not align with wishes and, in fact, fulfill your worst fear.”

In 1991, the Patient Self Determination Act (PSDA) and the NYS Health Care Proxy Act passed after many high-profile cases. Waldrop explained, “the PSDA was established to encourage adults to make and document choices and decisions about the type and extent of the medical care they want if/when unable to speak for themselves. The passage of this legislation brought sighs of relief in healthcare and provided us with means to initiate the important conversations that were needed to assure we took care of dying people in the way they hoped for. Moreover, the PSDA required hospitals and healthcare organizations to ask people who were being admitted if they had a healthcare proxy or living will, and, if not, to provide one.” 

Shortly after the PSDA passed, Professor Waldrop decided to pursue her Ph.D. and enter academia. While pursuing her degree, she worked as a Hospice Social Worker and at the bedsides of people who were near death. “I was able to help families make meaning, say important final words, and complete relationships. I learned about living and dying with families in their homes. The truth I often share with my students is that if it weren’t for that experience, I wouldn’t be here doing what I do now. Learning from people who were dying and their families taught me about how to live and what is important in life and continues to inform my research, teaching, and service,” Waldrop said.

Completion rates of advance directives to help ensure that care is consistent with expressed wishes are undesirably low (Yadav et al., 2017). Decisions near the end of life are not simple, logical, or linear. They are complex, uncertain, emotionally laden, and can pivot rapidly with changes in clinical conditions. Moreover, clarity on all possible end-of-life scenarios and decisions is impossible, rendering uncertainty even with a completed document (Morrison, 2020).  These factors and increasing societal knowledge about advance care planning have shifted Waldrop’s research to exploring disease-specific and setting-specific communication about end-of-life wishes. She transitioned to considering the nature and timing of decision-making and provider communication across the trajectory of End Stage Renal Disease (ESRD) and the beginning of dialysis treatments. ESRD carries a high symptom burden, high rates of comorbid conditions, and death (Mandel, Bernacki & Block, 2017). 

The COVID-19 pandemic has exposed fundamental cracks in our healthcare system. The pandemic has also intensified stress and a sharpened focus on the importance of values-based conversations about healthcare wishes in times of incapacity. Disparities in access to care underscore challenges to upholding choices about death. Deborah Waldrop’s work focusing on communication about personal choices in a serious illness demonstrates ways to do this that create peace for families and their loved ones receiving care. When speaking of the importance of Waldrop’s work, Dr. Kerr shared, “She’s clinically astute, she’s compassionate, and she knows how to communicate effectively. And most importantly, she listens extraordinarily well…The biggest thing is that she’s reconstituted our focus of care with the inclusion of the family. Because people die in totality. And without consideration of their relationships, it’s not done humanely. For me, humanizing caring for the patient includes also caring for their loved ones. And that’s what her work does.”

Identifying the best timing and manner for conversations about one’s hopes and wishes in the context of a serious illness provides an opportunity for shared decision making that honors family relationships and offers providers real-time perspectives about the person they are treating in the social context. The Baldy Center for Law and Social Policy support of this type of medico-legal research to improve communication has been central in moving it forward. Meaningful and open conversations about what is wanted and not wanted at life’s end are crucial.

References

Billings, J.A. & Bernacki, R (2014). Strategic targeting of advance care planning interventions: The Goldilocks Phenomenon. Clincal Review & Education 174(4), 620-624.

Mandel, E.I., Bernacki, R.E. & Block, S.D. (2017). Serious illness conversations in ESRD. Clinical Journal of the American Society of Nephrology 12(5), 854-863.

Morrison, R. S. (2020). Advance directives/care planning: Clear, simple, and wrong. Journal of Palliative Medicine, 23(7), 878-879. doi:doi: 10.1089/jpm.2020.0272

Yadav, K. N., Gabler, N. B., Cooney, E., Kent, S., Kim, J., Herbst, N., . . . Courtright, K. R. (2017). Approximately one in three US adults completes any type of advance directive fore end-of-life care. Health Affairs 36(7), 1244-1251. 

La Monica, M. (2021). More families are discussing end-of-life planning as COVID-19 cases rise – here's how to start the conversation Accessed April 22,2021.

Keywords:  Medico-legal research, Advanced directives, written directives, end-of-life care, Conversation Project, advanced care planning, Patient Self Determination Act, Health Care Proxy Act, health care policy.