Advance Care Planning
Advance Care Planning is advocacy.
People with disabilities are routinely left out of Advance Care Planning, or have it done to them. I do it the other way around. We start from the person: what a good life and quality of life, even when life is ending, look like to them, who they want speaking for them if they can't speak for themselves, and how to write it down so it's valid, increasing the odds of others honoring it. It's built on supported decision-making, not guardianship by default. This is the thinking behind “People Planning Ahead,” the AAIDD guide I wrote.
What's included
Planning with the person
Facilitated conversations that surface what matters, in language and formats the person can actually use.
Policy and tools
Building Advance Care Planning into your organization, with tools your staff and the people you support will reach for.
Facilitator coaching
Preparing the people who lead these conversations, so they can hold them well, even the hard parts.
From the work
Four stories from this work
I was there for each of these. Click a name to read what happened, and what the story has to do with person-centered Advance Care Planning.
MarcusThe hospital recommended a feeding tube. His plan said to wait.
The hospital recommended a feeding tube. His plan said to wait.
Marcus lived with a developmental disability and severe and persistent mental illness. When he experienced a stroke and had swallowing difficulties, the hospital's recommendation was to insert a feeding tube. Marcus had previously appointed a healthcare power of attorney who was engaged in his life, and who knew with certainty that Marcus would never want a feeding tube. His power of attorney met with the care team and helped implement a plan to give Marcus more time to see whether his swallowing would improve. Marcus did improve, and with rehabilitation, ultimately did not need a feeding tube.
What was the issue
- The feeding tube was the hospital's standard recommendation. Nobody on the medical side was asking what Marcus would have wanted.
- Decisions get made fast in a health crisis, and the person they affect is often the last one consulted.
Why it matters
- Marcus had planned ahead. The person speaking for him was someone he chose, and she knew his wishes for certain.
- Because his power of attorney had real standing, the care team agreed to wait and see rather than going straight to the standard recommendation. Marcus recovered on his own, so the question answered itself.
ArjayaShe had already said no to the Bi-PAP, more than once.
She had already said no to the Bi-PAP, more than once.
Arjaya was hospitalized for the fourth time in as many months with metastatic cancer. A respiratory therapist suggested a Bi-PAP machine to help with her breathing. Arjaya did not like the Bi-PAP. Even with repeated tries, she said it made her claustrophobic and increased her anxiety. As her illness progressed and she was less lucid, the Bi-PAP suggestion came up again. Someone even asked, “But will she know? She's not very coherent.” Arjaya's daughter was her healthcare power of attorney, and she believed her mother had made her wishes very clear. Hospice services were initiated, and Arjaya received medications to ease her anxiety and her breathing. She died peacefully, covered by a favorite quilt she had made, with her family by her bedside.
What was the issue
- A treatment Arjaya had refused, clearly and more than once, came back on the table as soon as she was less able to speak for herself.
- “But will she know?” sounds like a small question. It is the kind of question that can undo a person's stated wishes in one conversation.
Why it matters
- What a person says while lucid is supposed to keep counting after lucidity fades. Advance Care Planning exists to protect exactly that.
- Because those conversations had happened, her daughter could hold the line without second-guessing herself at the worst possible time. Arjaya spent her last days in comfort, at home in her own life, instead of fighting a machine she hated.
CorellaAn autopsy policy that ignored who she was.
An autopsy policy that ignored who she was.
Corella lived in a small community group home for people with significant intellectual disability and very high support needs. She had metastatic colon cancer and had just started receiving hospice at home, with superb support from her group home staff. When funeral planning came up, Corella's team pointed to a policy from the disability services' regional authority: Corella must have an autopsy. Corella and her legal guardian were Jewish, and an autopsy conflicted with their religious and cultural tenets. Her guardian worked to obtain a court-ordered exception to the policy, and eventually to change the policy completely. When Corella died, she did not have an autopsy.
What was the issue
- A regional policy required an autopsy for everyone in Corella's situation. She and her guardian were Jewish, and autopsy went against their religious tradition.
- The policy had never been questioned. It applied to Corella whether it fit her or not.
Why it matters
- Person-centered planning includes noticing when a policy tramples something that matters deeply to a person. In Corella's case, that was her faith.
- Person-centered planning always includes honoring culture.
- Her guardian won a court-ordered exception, and then kept going until the policy itself was changed. Corella was honored in death the way her tradition required, and so was everyone in that region who came after her.
Conrad“Do everything,” he says. And he refuses to go to the hospital.
“Do everything,” he says. And he refuses to go to the hospital.
Conrad lives with severe and persistent mental illness. He is 77 and lives in a community mental health residence with 24-hour support, after a lifetime that included many psychiatric hospitalizations. His physical health is declining. He refuses to go to the hospital, but staff at his residence call EMS a few times a year when they are concerned. Conrad tells his sister, who is his legal guardian, that he “wants EMS to do everything!” He isn't really able to explain what “everything” means. But one thing never, ever changes: his consistent refusal to go to the hospital. Through Advance Care Planning conversations, his sister found the way she believes she can honor his wishes to the extent possible. She tells EMS to do everything they can do on site, at Conrad's home, that doesn't require transporting him. If transport ever becomes necessary, she recognizes she will need to make that decision when the moment comes.
What was the issue
- Conrad's two wishes can't both be honored in full. “Do everything” and “never take me to the hospital” will eventually collide.
- When someone's wishes contradict each other, and he can't explain them, it gets tempting to write off his voice altogether and let the system decide.
Why it matters
- The planning conversations turned a contradiction into instructions his sister can actually give: EMS does whatever can be done at his home, without transporting him.
- The plan is also honest about where it ends. If transport ever becomes unavoidable, his sister knows that decision will fall to her, and she has thought it through before the crisis instead of during one.
Let's start with a conversation.
It starts with a short conversation about what you're facing. No fee, no pressure, and no package to buy. We'll figure out together whether I'm the right fit.