Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities
My Plan for a Good Life, Right to the End: An Accessible Approach to advance care planning
Author McKenzie, with planning materials.
Why make an advance care plan?
Advance care planning is a process of talking about and planning how to live well, right to the end of our lives. Good quality, holistic advance care plans usually include information about the person’s values and beliefs (what’s important to them), things they want to do before they die (personal life goals), how and where the person wants to be cared for while living and dying (including treatment preferences and advance directives), and legal and financial matters (such as a will, or appointment of an enduring power of attorney).
Making an advance care plan is a way to ensure that people’s wishes are known at the end of life. Having an advance care plan makes it much more likely that a person’s wishes will be followed. It also has the benefit of reducing stress and increasing comfort for the person themselves as well as for their loved ones at the end of life.
Research has demonstrated that people with intellectual disabilities can successfully take part in advance care planning, though the evidence base is very young and still growing (McKenzie et al., 2017; Watson, et al., 2019). What is very clear is that people with intellectual disability are often excluded from making decisions about what happens at the end of their lives (Noorlandt et al., 2020; Wiese et al., 2015).
Finding Out More
We wanted to explore this topic further and find out more about what it takes to support people with intellectual disability to get started, and to participate fully in the planning process. A two-year research project ensued, partially funded by the IHC Foundation and the Health Quality and Safety Commission. The research team, from the University of Otago, worked with seven older adults with intellectual disability and managers from their community residential disability services as co-researchers. We also involved family members and health professionals to ensure that we understood their perspective. This approach was chosen to ensure that the outcomes would benefit and focus on the perspectives of people with intellectual disabilities, the most important people in this process. The study had three parts: an exploration of the existing advance care planning process, co-design of an improved process, and a trial and evaluation of the new process.
The co-researchers identified that the traditional process of advance care planning did not make it easy for them to participate. Some of the reasons included:
- Not being able to read or understand the standard advance care plan template, My Advance Care Plan and Guide (ACP Co-operative, 2016), that is used in New Zealand
- Health professionals (who usually facilitate the planning process) not having enough time or the right skills to support them through the process of planning
- A lack of available information about health and treatment options
- A lack of disability-specific training or information to guide the people who would provide support.
Responding to these reasons, the co-research group identified a process that they thought would be more inclusive and work better for them. The process centred around the idea of having a trained ‘guide,’ preferably from their community residential disability service, to support them with planning, instead of their general practitioner. They wanted a guide who they knew and trusted and who had skills in teaching and adapting communication. Importantly, the guide needed to be someone with the time to work with them on their advance care plan. It was proposed that the guide would support them in a person-centred way; ensure that they had opportunities to first learn about advance care planning before making choices, involve others who could contribute, and support the person to collaborate with the general practitioner about details related to health and treatment.
Having agreed on what they wanted, a set of resources was then developed to inform and support the process. These resources were:
- Policy guidance materials for community residential disability support services
- An easy-read advance care plan template titled ‘My plan for a good life, right to the end’
- A training course for the guides
- A handbook with process advice and links to learning materials.
The easy-read advance care plan template was designed to be as useful and accessible/inclusive as possible. It aligned with the existing standard plan template used by health professionals in New Zealand, and incorporated a space to record how key decisions were made. This enabled health professionals to trust what they read, and to know how to talk to the person in an individualised way should they need to have further conversation with the person.
The co-researchers with intellectual disabilities then trialled and evaluated the new approach. All of the co-researchers were well at the time, and none had a life-limiting condition. They approached advance care planning pro-actively, with the intent that their plans can be updated if their circumstances change in future, or if they change their minds about their decisions.
The new approach worked well, and demonstrated that the key features of the new approach were important and useful. Five of the seven co-researchers with intellectual disability completed their advance care plans by the end of the study, and the other two were underway. The completed plans included all of the information required, were rich and detailed, and were trusted and accepted by health professionals.More importantly, the decisions in the plan were made by the co-researchers, and they were pleased with their plans and felt that they reflected their personalities and their wishes:
“I wrote I want to go to the rest-home when I’m old. Not right now, but when I am old.” [Co-researcher with intellectual disability]
“It sounds like him.It cracks me up, he’s very funny. I love that he wants to be buried with his DVDs.” [Family member]
“The doctor was really pleased. He said that Joan had a really good understanding, and he asked the questions…and what we had written was exactly what she said, so they were more than happy, and it was all signed and done.” [Disability service manager]
The planning process provided opportunities for people to become more comfortable talking about death and dying, which was beneficial to many of those involved. Terry, the mother of one of the co-researchers with intellectual disability, said, “To me it’s been amazing, to open up that path and that mindset, and now you can think happy thoughts about [people who have recently died].”
The guides commented that the training had prepared them well and that the process of planning was not as difficult or sensitive as they thought that it would be. They found that the new plan template helped them know what to talk about and how to engage in the conversation. It explicitly asked all of the necessary questions, meaning that none of the ‘tricky questions’ were avoided.
“Some things we think are tricky aren’t, like this one [where I want to die]. Joan says she wants to stay here and checked that she doesn’t have to go anywhere else. She says she wants to die here.” [Disability service manager]
These results provide valuable evidence of how to approach advance care planning with people with intellectual disability. The process depends on more than just having an appropriate easy-read plan template. The combination of organisational policy, training, choosing the right person to guide the process, collaboration between all involved, and working in a truly person-centred way are just as pivotal.
The tools developed in this study, and the new approach, have promise for use in supported decision-making contexts, and when planning reactively with people who have life-limiting conditions. Now, the challenge is to extend the reach of advance care planning to all people with intellectual disability who may wish to take part.
Advance Care Planning Co-operative. (2016). My advance care plan and guide. Wellington: Advance Care Planning Co-operative. https://bit.ly/3CpLXde
McKenzie, N., Mirfin‐Veitch, B., Conder, J., & Brandford, S. (2017). “I’m still here”: Exploring what matters to people with intellectual disability during advance care planning. Journal of Applied Research in Intellectual Disabilities, 30(6), 1089–1098. https://doi.org/10.1111/jar.12355
Noorlandt, H. W., Echteld, M., Tuffrey-Wijne, I., Festen, D., Vrijmoeth, C., Heide, A., & Korfage, I. (2020). Shared decision-making with people with intellectual disabilities in the last phase of life: A scoping review. Journal of Intellectual Disability Research, 64(11), 881–894.
Watson, J., Voss, H., & Bloomer, M. J. (2019). Placing the Preferences of People with Profound Intellectual and Multiple Disabilities At the Center of End-of-Life Decision Making Through Storytelling. Research and Practice for Persons with Severe Disabilities, 44(4), 267–279. https://doi.org/10.1177/1540796919879701
Wiese, M., Stancliffe, R. J., Read, S., Jeltes, G., & Clayton, J. M. (2015). Learning about dying, death, and end-of-life planning: Current issues informing future actions. Journal of Intellectual and Developmental Disability, 40(2), 230–235. https://doi.org/10.3109/13668250.2014.998183