Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

Break the Silence: A Systems Approach to End-of-Life Planning


Jacqueline McGinley is an assistant professor in the Department of Social Work at Binghamton University in Binghamton, New York. She may be reached at jmcginle@binghamton.edu.

Smiling caucasian woman with dark shoulder length hair. She is wearing a plad shirt and leaning against a book shelf.

Jacqueline McGinley urges an end to a conspiracy of silence around death.

I have been talking to people, lots of people, about death and dying for the last five or so years. I have interviewed family caregivers, healthcare providers (e.g., doctors, nurses, paramedics), chaplains, social workers, direct support professionals, and even end-of-life doulas. In a few rare instances, I have even had the privilege of sitting bedside with people who were seriously ill, interviewing them at the end of their lives. 

People often tell me during these conversations that we do not talk about dying enough.This is especially true when we are talking about people with intellectual and developmental disabilities.There are many reasons why this might be, and not least among them are misperceptions about what people can understand, lack of training and support for having these conversations, and concerns about how these conversations might be used or misused when making important end-of-life decisions (Lord et al., 2017).I also suspect that many people are scared, because thinking about the people we love dying or our own deaths can be distressing.

This conspiracy of silence means that some people are not told that they or the people they care about are going to die. In fact, a great many people with intellectual and developmental disabilities bear witness to death or die themselves without ever being given the chance to discuss what is happening (Tuffrey-Wijne et al., 2020). A colleague who has a private practice was recently counseling an individual with Down syndrome who was having a very hard time transitioning into a new home after his parents died in quick succession. Within the first three minutes of their session, he began repeating the phrase, “No one ever told me that we die.”Another colleague who has spent the last 30 years as a direct support professional and cared for many people at the end of their lives once said to me, “There was never really a plan, and we don’t talk about dying. We never talk about it. [Our clients] are older and they’re getting older.And yet, no one is ever prepared for that.”

This need not be the way.Advance care planning is simply discussing and documenting your wishes should you be unable to communicate them for yourself one day. More specifically, the National Institute on Aging (NIA, 2018) defines advance care planning as involving, “...learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know—both your family and your healthcare providers—about your preferences.” To ensure these preferences are upheld, we can put them into advance directives, which are legally-binding documents such as living wills and healthcare proxies. Medical orders, such as medical orders for life-sustaining treatment or do not resuscitate orders, are another way we can document and direct our end-of-life care. It is recommended that advance care planning occurs annually and after any significant life transition, such as a new diagnosis, death of a caregiver, or transition in living arrangements. 

Advance care planning is not new; in fact, advance directives were first proposed in the late 1960s and many end-of-life planning tools have emerged in the time since (Sabatino, 2010). Yet, only about 30% of Americans have an advance directive (Rao et al., 2015).While there is very little research on the rate of advance care planning among people with intellectual and developmental disabilities, what is known suggests that it is likely much lower than what is found within the general population (Voss et al., 2017).

Once again, this need not be the way. As a social worker, I tend to see the world a bit like a nesting doll. There are multiple systems across which we interact in accordance with our various roles, organizational rules, and societal norms. Anytime I am trying to understand an issue or solve a problem, I find myself ruminating on how the micro (individual, families), mezzo (groups, organizations), and macro (institutions, society) systems we inhabit can be changed.I get particularly excited when all that contemplation leads me to identifying strengths within the systems that can be used to empower people to affect change in their own lives.And after years of talking with hundreds of people about death and dying, I think I have started to arrive at a prescriptive on what needs to happen as it relates to advance care planning for people with intellectual and developmental disabilities.

At the macro-level, there exists an opportunity to integrate advance care planning within existing institutional policies.People with intellectual and developmental disabilities often engage in semi-annual, person-centered planning.This has long-been a best practice but it more recently became mandatory for those receiving Medicaid home and community-based services (HCBS).These regularly-occurring meetings provide the ideal setting to discuss advance care planning.Everything from when a person wishes to retire, to who they want at their bedside when seriously ill, to where they wish to die can and should be discussed then documented during the person-centered planning process. Concurrently, it is important that policies exist across society to protect people with intellectual and developmental disabilities, so that any advance directives or medical orders that emerge from this planning process are ethically upheld. Safeguards must exist so that healthcare providers and others who enact these plans honor and respect the lives of people with disabilities, empowering individuals in the decision-making process and ensuring equitable access to essential healthcare in all circumstances.

At the mezzo-level, organizations must develop and implement practices for supporting advance care planning. Individuals with intellectual and developmental disabilities will become older, seriously ill, and die; yet, our systems of care often ignore these fundamental realities that define the human existence.The good news is that a number of resources do exist to support organizations with these efforts.Many advance care planning tools can be readily adopted into day-to-day practices, including The ARC’s Center for Future Planning and The Conversation Project.It is important, however, that organizations recognize that this work can be emotionally taxing and sometimes legally complex, particularly when it comes to enacting advance directives and medical orders. An organization I frequently partner with has appointed a team, consisting of a licensed social worker and clinical psychologist, to oversee their advance care planning efforts, ensuring that everyone is supported in developing and implementing individuals’ wishes in the moments when it matters most.Ongoing training and support are needed for direct support professionals who are often the ones initiating these important conversations, sometimes at kitchen tables during routine meetings and other times in emergency rooms during moments of crisis. 

At the micro-level, individuals and families must be empowered to engage in the advanced care planning process.This is arguably the most important thing that needs to happen. There must be a concerted effort to break the conspiracy of silence; individuals and their families should be regularly engaged in advance care planning, including discussions of death and dying.There exist a number of resources for facilitating these conversations with people who have intellectual and developmental disabilities, such as the Breaking Bad News guidelines and the Talking End of Life toolkit.It is no longer sufficient to avoid these conversations under the presumption that people will not understand.As an end-of-doula to individuals with intellectual and developmental disabilities recently said to me, “Everyone I work with can feel loss.They can process it and understand it more than anyone ever really realizes.I think people try to protect them.They say, ‘Well, she doesn't understand; she's not going to understand it.’But she does; she really, really always does.”

This is my prescriptive for what needs to happen. By harnessing institutional policies to encourage advance care planning, we are moving toward an empowerment-based model that directs healthcare providers to ethically uphold end-of-life wishes.By establishing organizational support for the advance care planning process, we are ensuring the development and implementation of individuals’ plans happens in a manner that aligns with best practices. By holding space for people with intellectual and developmental disabilities to engage in the advance care planning process, we are honoring the importance of their lives.


  • Lord, A. J., Field, S., & Smith, I. C. (2017). The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis. Journal of Applied Research in Intellectual Disabilities, 30(6), 1007–1021. https://doi.org/10.1111/jar.12376

  • National Institute on Aging (NIA). (2018, January 15). Advance care planning: Health care directives. https://bit.ly/3IqA0rR

  • Rao, J. K., Anderson, L. A., Lin, F.-C., & Laux, J. P. (2014). Completion of Advance Directives Among U.S. Consumers. American Journal of Preventive Medicine, 46(1), 65–70. https://doi.org/10.1016/j.amepre.2013.09.008

  • Sabatino, C. P. (2010). The Evolution of Health Care Advance Planning Law and Policy. Milbank Quarterly, 88(2), 211–239. https://doi.org/10.1111/j.1468-0009.2010.00596.x

  • Tuffrey‐Wijne, I., Finlayson, J., Bernal, J., Taggart, L., Lam, C. K. K., & Todd, S. (2020). Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK‐wide survey of intellectual disability support staff. Journal of Applied Research in Intellectual Disabilities, 33(5), 927–938. https://doi.org/10.1111/jar.12714

  • Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M., & de Veer, A. J. E. (2017). Advance Care Planning in Palliative Care for People With Intellectual Disabilities: A Systematic Review. Journal of Pain and Symptom Management, 54(6), 938-960.e1. https://doi.org/10.1016/j.jpainsymman.2017.04.016