In 2005, staff from the California Department of Developmental Services, which oversees services and supports for persons with developmental disabilities, contacted the Coalition. They were concerned that another state agency, the California Department of Public Health, was requiring that terminally ill individuals living in “intermediate care facilities for the mentally retarded” (ICF-MR) move to a nursing home in order to receive hospice care. The thinking was that terminally ill persons required more nursing support than ICF-MRs provide. The result was that these individuals were forced to leave the place they called home and spend their last days in an unfamiliar place.
This is not an uncommon scenario. Regulatory agencies play an important role in making sure a minimum standard of care is provided in licensed settings. Regulatory staff often carry out their duties in a void without knowledge or appreciation of the unintended consequences of their interpretation of state law. The Coalition helped open a dialogue between the two agencies and eventually the state's position changed.
This experience helped us realize that persons with developmental disabilities were living longer and aging, much like the general population. Many of these individuals were now outliving their parents, the people who had traditionally spoken for them.
Believing there was more we could do to improve care for seriously ill persons with developmental disabilities, the Coalition talked to our contacts at the state agencies to find out who needed to be at the table and then invited them to be part of a workgroup.
Some workgroup members warned that this was a “hot topic” and that it would be difficult to make progress. Others thanked us for convening the workgroup. During a particularly robust discussion at one of the meetings, one attendee who had a developmental disability simply asked us, “Why can't we have this information?” In that moment, it became clear that it didn't matter what the “professionals” or those who were in positions of power thought. The matter was that we had people in our midst who wanted information. It's a basic human right that people be provided the means to be as engaged as possible in the process of making decisions about their medical care.
Through discussion, we identified the issues related to EOL for this population and possible projects that might move things forward. One of the ideas was developing materials to help enable people with developmental disabilities to engage in ACP. A few years later, we obtained the resources to follow up on this idea.
The first thing we did was convene three focus groups of people who had developmental disabilities in different parts of the state. Each focus group met three times. Through the guidance of these focus groups, we crafted Thinking Ahead, an easy-to-use workbook in plain language, using symbols and pictures that enables people to make and document their wishes regarding health care treatment and related issues. A companion DVD features vignettes that illustrate the purpose and use of the materials, enabling people with limited reading comprehension to use and understand them. Thinking Ahead also features interviews with three individuals with developmental disabilities talking about real life experiences they've had that would have gone smoother if their loved one had completed an AD.
We have found that whenever we address the needs of a “special” population, it benefits all of us. Through this work, we have come to believe that many more patients would have “capacity” if health care providers communicated in a way that more people could understand. Responsibility for making the conversation understandable is on the health care provider. This shift in thinking will benefit all patients.
As with many of our projects, this one required us to collaborate with a new set of stakeholders. We needed to become familiar with the issues, dynamics, and politics that surround this community. By taking a collaborative approach, we were able to take a “hot topic” and create a situation that benefits all stakeholders.
The Coalition has had tremendous success collaborating with individual physicians, nurses, and others who are champions for ACP. Now, with health care reform in law, we have a new opportunity to connect with those charged with managing the operations of large health systems. Our society is realizing that we need to obtain better value for our health care dollar and ACP is a way to honor patient preferences. This is an exciting time to be a collaborator.
Lynn, J., Arkes, H. R., Stevens, M., Cohn, F., Koenig, B., Fox, E. et al. (2000). Rethinking fundamental assumptions: SUPPORT's implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment. Journal of the American Geriatrics Society, 48 (5 Suppl.), S214–S221.
Lynn, J., De Vries, K. O., Arkes, H. R., Stevens, M., Cohn, F., Murphy, P., . . . Tsevat, J. (2000). Ineffectiveness of the SUPPORT intervention: Review of explanations. Journal of the American Geriatrics Society, 48 (5 Suppl), S206–S213.
The SUPPORT Principal Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). Journal of the American Medical Association, 274, 1591–1598.