Some time ago, I was caring for a 94-year-old gentleman. An active senior, he lived alone in his small home, doing most everything for himself. Basic self-care tasks like eating, bathing, grooming, and getting dressed were not obstacles. Except for shopping and housekeeping, but he managed his money, medications, and cooking.
One day, I made a visit with the goal of documenting his advance care plan. So, I asked him, “If your heart should suddenly stop beating, would you want everything done?
After a thoughtful moment, he replied: “It depends.”
There is no one-size-fits-all answer to this question. It is a personal one and varies from individual to individual. Even in the same individual, one’s answer to “Depends on what? “And “When is enough enough?” evolves as age and health change over time. My struggle with this question birthed an idea for the project I now call CaringEnd.
Why I started CaringEnd
The experience I described above is a true story, and was my first attempt to address a new realization.
Not long before then, around 2012, I became the power of attorney for my parents. It was then that I realized I was not having routine advance care planning conversations with my own patients: too many barriers. And as a caregiver for my parents, I experienced challenges unique to family caregivers.
As a family physician specializing in primary care medicine for over 35 years at the time and focusing on seniors for fifteen years, I had to acknowledge that I had no formal training in discussing end-of-life preferences with my patients.
Frankly, I dreaded such emotion-laden, often awkward conversations.
I was uncertain how to begin, how to proceed, what outcomes I would achieve, and how to manage the limited available time. While each one of my patients needed these discussions documented in an advance care plan well before any critical medical event, I only performed them when a critical event demanded it.
That is why I started CaringEnd. I needed to fix my own problem.
In the beginning, just for doctors
I initially intended for CaringEnd to serve doctors. I talked to my colleagues as well as friends and patients. I looked at the medical literature. I learned that the literature, my colleagues and laypeople agreed on one thing. All expected the doctor to initiate the conversations.
While many patients are proactive (less likely to happen among minorities, however) and take advantage of resources available online or through their legal or financial planners, everyone still expected the doctor to initiate these essential conversations.
Therefore, I initially designed CaringEnd with primary care doctors in mind. I decided to restrict my focus to doctors caring for adult patients because this was my area of expertise. I do hope to introduce a version of CaringEnd for children in the future. But this requires that I partner with a specialist in pediatrics.
Isn't advance care planning the same as delivering bad news?
I came to understand that the experiences that I did have with end-of-life conversations were not advance care planning conversations. They were Delivering Bad News conversations. Can you see the difference?
The Delivering Bad News conversation
I’m found that whenever I mention advance care planning conversations, people think of a Delivering Bad News conversation. And so did I before I started CaringEnd and talking to people.
A Delivering Bad News scenario is an urgent event. Imagine you or your loved one is in a coma from a severe head injury. Or they have cancer, the chemotherapy is no longer working and their organs are failing. Or they just received a new cancer diagnosis. In other words, we think of an event that’s catastrophic, and urgent action needed. “Your dad just had a heart attack. Do you want everything done?”
An advance care planing conversation, though, is nothing like that. Imagine that you are feeling fine, life is going on as usual and you are at a routine doctor appointment. An advance care planning conversations should resemble, in my mind, an anticipatory guidance conversation that a pediatrician has with new parents.
The Advance Care Planning conversation: think about anticipatory guidance
With an anticipatory guidance conversation, the pediatrician explains what you can expect, anticipate and plan for in the first 2 years of your newborn’s life. You explain what they should expect and look out for regarding their baby’s growth, their developmental milestones, common issues for feeding, skin care, proper sleeping position, safe environment and vaccine schedule, for example.
In other words, the parent learns the natural course of what to expect, how to care for their new baby, to anticipate things that could go wrong and how to prevent, monitor and manage them, etc. And all that is part of routine comprehensive care.
That realization helped me to look at advance care planning for adults with fresh eyes. I saw a new and exciting opportunity.
Not just for doctors, but also for family caregivers
I saw opportunity for myself as a primary care family physician. As I began to learn ways to broach these conversations in my practice, I found my curiosity revived and my ability to empathize with my patients improve. They n turn gained trust in me and gained self-management skills.
I saw opportunities to help family caregivers, those people who have taken on the task of caring for a family member, neighbor, or friend. Opportunities to help them partner with their loved ones in their care, partner with the doctors and partner with, and take better care of themselves.
These are things we’ll be exploring and learning together about.
Until next time,
Now it’s your turn
I someone asked whether you would want “everything done” if your heart stopped beating, would you answer, like my 94-year-old patient, “It depends?
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Your feedback is important to me
Do (or did) you confuse an Advance Care Planning Conversation with a Delivering Bad News conversation? When asked about the type of care you would prefer for yourself in the future, did you (like most people) limit your thinking to catastrophic events and emergency procedures?
Do you agree or disagree? Please respond in the Comments.
Also, don't forget to let me know what else you want me to cover. I'm grateful for your input.
Take my brief CareProviderQuiz (for doctors).
The CareProvider Quiz for doctors can help you figure out where you are on the path to leveraging advance care planning conversations to prevent burnout and build patient trust. Knowing this is absolutely key if you are looking to make changes that work for you and for your patient.
Take my brief CareGiver Quiz (for family caregivers).
The CareGiver Quiz for family caregivers can help you figure out where you are on your caregiver journey, how you feel about it, and what you need. It’s one way you can make your caregiver journey easier and fulfilling for both you and your loved one.
Until next time,
Forrest Jones MD