By Mary Beth Morrissey, PhD, MPH, JD
This year we celebrate the 5th National Health Care Decisions Day (NHDD), a nationwide campaign to increase awareness and foster empowerment among Americans about their planning for and full participation in personal, family and community health care decision making processes. Even in the 5 years since the inception of NHDD, we have witnessed change in how we as social workers, in collaboration with other members of the health professions, conceptualize these processes and help to translate them into practice in our everyday work in the field. In these brief remarks recognizing the importance and impact of NHDD, I will focus on critical aspects of the NHDD change movement including community organizing, social solidarity and social justice.
You will hear and read much information in the next few weeks about NHDD that encourages individuals to complete health care proxies and begin meaningful conversations with their loved ones about their values, preferences and health care choices now while they have capacity, as well as in anticipation of a time when they will no longer have capacity. I certainly echo and support this call for action. Many of you serve in roles in which you actively engage individuals and families in these discussions and support them in navigating what may commonly be uncharted territory for those who have never entertained these discussions. For example, choosing a health care agent is an emotion-laden decision process often fraught with conflict. Sometimes spouses may not be the best candidates for appointment as agent for any number of reasons, and individuals may be more comfortable turning to an adult child or even a close friend for the purposes of this trusted role. We should also remain attuned to the complexities that arise from societal norms for the surrogate whose ethical responsibilities to the individual (principal) who made the appointment are not always co-extensive with how such responsibilities are defined under the law. In a recent chapter in the 2012 Hospice of Foundation of America book edited by Dr. Ken Doka and colleagues, I wrote the following: “…the surrogate’s relation of trust to the [nursing home] resident is not co-extensive with the grant of legal authority. Moral obligations to the resident arise with the investment of trust in the surrogate. The surrogate is valued because he or she is trusted and is called up to serve the suffering individual and relieve his or her suffering” (Morrissey, 2012, p. 79). Strengths-based approaches to these process conversations and conflict negotiations in multiple areas of health care decision making, especially within families, are traditional and time-honored roles of social work in the health systems and in community-based care.
I would like to turn now to what you may not hear or may not be transparent about NHDD, and what I view as an equally important part of the movement, and that is, the goals that focus on community organizing, community education, and building community capacities for social solidarity and social justice. To begin with, there is some evidence in the literature that utilization of advance care planning tools is higher among whites and populations with higher income. Some of these studies have focused on the living will in particular as a planning tool which continues to have limitations as a tool. Those with higher incomes have the resources to go to the offices of elder law attorneys and seek professional guidance on their future health care planning. But we know that this is not necessary, and not what we advocate for in providing community education. While there is some variation from state to state, we aim to deliver a clear and simple message to everyone that it is easy – and best practice — to complete a health care proxy, there are few legal formalities to be followed, and no formal legal assistance required or needed in most cases. Instead of focusing on legal formalities or what we can describe as the transactional nature of the health care agent appointment, we as social workers can be instrumental in shifting the focus to what is more appropriately germane to the health care decision making process – the interpersonal, relational, social, emotional, and cultural meanings of the decision processes. This is the context in which conversations about planning for one’s future health care or living with serious illness need to take place. Social workers are well-equipped by virtue of their extensive training and education in social ecology to understand the multidimensional lived experiences of the person-in-environment and embedded in personal, family, and social systems. Therefore, NHDD is essentially a community health education campaign that calls for community organizing skills, community planning, and maximizing the engagement of the community in creating supportive environments that will improve the public health and prevent suffering and the detrimental consequences of progressive chronic illness.
This paradigm shift in how we understand health care decision making is radical because it imposes a much greater obligation on the community to assume shared responsibility for its members, especially vulnerable members of the society who may not have the personal, social or economic resources to plan adequately for their care or operationalize their choices due to barriers such as health literacy, and language and cultural differences and practices that may not be well-understood in our Western society. Health care decision making can no longer be viewed solely as a task of the individual and as an individual responsibility. We are situated now in shared decision making processes that that continue to give deference to ethical principles of self-determination and informed consent, yet involve conversations that bring together the individual decision maker with such person’s meaningful others including family and caregivers, health care practitioners, spiritual counselors, the person’s health care agent if the person has so consented, and the community. Hospice and palliative care have given us the model of the patient and family as the social unit of care. We must build on this very successful model in providing education to our communities about how we may provide adequate social support to older adults with dementia, frail elderly persons, persons who are isolated in the community, those who are suffering with serious chronic illness, and institutionalized members of the society including vulnerable nursing home residents and aging prisoners.
What does it mean to stand in social solidarity with others as part of NHDD?
Solidarity rights as second-generation, positive rights have been recognized as a core notion embedded in the Universal Declaration of Human Rights (1948; Wronka, 2008). In a recent report entitled, Solidarity: Reflections on an Emerging Concept in Bioethics, Prainsack and Buyx (2011) describe the genesis of the concept of solidarity and its roots in modern communitarianism, or approaches that put the collective or community at the center of social life including promotion of social cohesion, shared values and goals, and pursuit of a common good. Prainsack & Buyx (2011) also comment that solidarity typically has a meaning of sharing costs to benefit others including financial and emotional costs. As the authors suggest, while solidarity may overlap to some extent with concepts such as responsibility, moral accountability, trust, reciprocity, charity, and altruism, it has its own unique meanings that may in part embrace some of the meanings suggested by these former concepts but stakes out new grounds of meaning as well. For our purposes and focus on the NHDD campaign, the concept of solidarity resonates with the goals of inviting communities to carry some of the costs of planning in advance for improved public health for all members of the society, and relieving the burdens of serious illness. Standing in solidarity invokes a call to action and to provide mutual assistance that goes beyond what we traditionally understand as empathy, although the provision of empathic, compassionate care on the ground in working with patients and families would be a demonstration of solidarity. Solidarity may have multiple meanings in the context of health care decision making such as making timely referrals to hospice and palliative care for those who are seriously ill, promoting health literacy, working toward the elimination of health disparities, hand-feeing a loved one who can no longer eat on his or her own, or honoring the dignity and personhood of those who may not be able to advocate for themselves due to diminished capacities. At the systems level, public deliberation and discourse about solidarity will involve consideration of just allocation of resources so that no one will die alone or in pain and suffering.
As we move forward into the next decades, we will deepen our understanding of how we as social workers and as members of our communities may draw upon the traditions and values of social work by giving full life to social solidarity and social justice in the practice of making good health care decisions for ourselves and with others to whom we stand in ethical relation.
Thank you for the opportunity to share these thoughts with you in honor of National Health Care Decisions Day.
Morrissey, MB (2012). Surrogate decision making: The surrogate’s value. In Doka, K. J., Tucci, A. S. , Corr, C. A., & Jennings, B., (Eds.), End-of-life ethics: A case study approach (pp. 63-84). Washington, DC: Hospice Foundation of America.
Prainsack, B., & Buyx, A. (2011). Solidarity: Reflections on an Emerging Concept in Bioethics. Wiltshire, UK: Nuffield Foundation.
United Nations (1948). The Universal Declaration of Human Rights.
Wronka, J. (2008). Human rights and social justice: Social action and service for the helping professions. Thousand Oaks, CA: Sage.