Why Goals of Care Conversations Matter: Honoring Patient and Family Choice
- Amy Shaw, PA
- Aug 27
- 3 min read
This week, HealthDay reported on new research published in the journal Cancer, highlighting how many patients with advanced cancer are receiving treatment at odds with their wishes. Nearly half of patients surveyed said they would prefer comfort-focused care over life-extending treatment. Yet, 37% reported receiving unwanted interventions—treatments that did not align with their wishes.
While this study focused on cancer, the lesson applies to dementia care just as much: families and caregivers need timely, honest, and compassionate goals of care planning conversations to guide decisions.
The Problem with the System: Why Goals of Care Conversations Are Missed
When I practiced in the traditional medical system, I saw a pattern again and again: doctors rewarded for speed, not for time spent ensuring that patients and families truly understood their options. Most clinicians want to do right by their patients, but the system does not always give them the time or tools to do so.
Too often, conversations about goals are delayed or avoided altogether. Many physicians, poorly trained to acknowledge emotion, default to treating according to their own values rather than the patient’s. I have known cancer patients who felt dismissed for declining aggressive therapies—sometimes life-altering ones, such as an amputation—that would have changed everything about how they lived their remaining days.
The system is somewhat more generous toward dementia caregivers, but the same pitfalls persist. Families often do not fully grasp the advanced stage of their loved one’s disease, and as a result, pursue therapies that bring more burden than benefit. Without guidance, it is easy to confuse “doing everything” with “doing the right things.”
What I Do Differently: Preparing Families Through Goals of Care Conversations
That is why I do this work in a new way.
When a family begins working with me, they are given what many have called a “graduate-level Dementia 101 course.” This family dementia education process walks them through the stages of dementia, the causes, and—most importantly—the strategies to navigate each stage with dignity and clarity.
It is much easier for families to make critical medical decisions outside of a crisis—when they are empowered with knowledge and prepared for what lies ahead. My goal is never to frighten families, but to help them feel steadied and supported. Families are prepared not just for the medical realities, but also for the emotional and relational challenges that come with them.
“We knew it was coming. Things happened exactly as you said it would. We were prepared.”
This is what a caregiver told me just this week, as I helped their family transition their loved one to hospice.
Families Who Feel Prepared Through Goals of Care Conversations
That is the difference clear, honest dementia caregiving strategies can make. Families can focus on care rather than crisis. They can move from overwhelmed to empowered—choosing what truly matters to them, not what the system defaults to.
The HealthDay article concludes that patients with advanced cancer need more timely and effective communication about goals of care. I couldn’t agree more. This isn’t just a cancer problem—it’s a healthcare problem. And it’s exactly the gap my work seeks to fill.
Every family deserves to have their goals honored. Every patient deserves dignity in their final chapter. And every caregiver deserves to feel empowered with understanding and dementia support, not lost in a system that speaks too little, too late.
📖 Learn more in my book: The Arc of Conversation: A How-to Guide for Goals of Care Conversations (Springer, 2023)
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Amy Shaw, PA
Founder, Better Dementia
