Living with Uncertainty – The Natural Limits of Advance Care Planning

Advance care planning is often pitched as a way to ensure your end of life wishes are met. While that perspective is true, it’s also incomplete. To get the most out of advance care planning, you need to understand the power and natural limits of the process.

Crucially, our end-of-life isn’t as predictable or as controllable as we might imagine.

Why We Can’t Imagine Our End-of-Life

Advance care planning is very much about the future. It involves thinking about and imagining what our ideal end-of-life would look like. What kind of medical treatments do we want? When do we want to switch from treatment to comfort care? What interventions should be avoided?

There’s a natural problem here – our ability to imagine the future.

Part of this comes from our current emotional state, which tends to color many projections about the future. There are other factors too, including how we change over time and how we view our future selves.

Our knowledge also plays a role.

In particular, healthcare tends to be more complex and messier than many of us imagine, especially when multiple health issues are at play. You’re also dealing with a system of many parts that don’t always communicate well with each other.

People with in-depth knowledge of healthcare and health conditions may be able to imagine the future better than the rest of us. But, there will still be plenty of gaps.

Such issues mean our ability to imagine and predict will always be limited.

We don’t know what the future will look like, and we don’t know what we’ll want when we get there.

Many Things Can’t Be Controlled

Then there’s the control aspect of things.

The wording in advance directives often implies that wishes will get followed as they’re written. Yet, even with the best intentions, this often doesn’t happen.

This is partly because medicine doesn’t have the amount of control we often expect. Even keeping someone comfortable can sometimes be a difficult task, as medications and surgeries have side effects, and health conditions can interact with one another.

There’s a lot of unpredictability too. Physicians and specialists can often estimate how a disease will progress and how long a person may live for, but such estimates are based on general patterns and there are plenty of exceptions.

This can mean that some end-of-life wishes aren’t followed at all.

For example, many people hope to die at home, yet end up dying in hospital instead. This can happen in a variety of ways, like when someone needs to visit the hospital for emergency treatment, then their health dramatically declines and they can’t be safely moved back home.

What This Means for Advance Planning

Despite these limits, advance planning is still powerful and crucial, for the reasons highlighted below.

Advance Planning Provides Some Information

If you’re in a coma or have advanced dementia, you’re no longer able to make decisions for yourself. Without advance planning, family members have to guess what you might want, which is incredibly difficult and stressful.

After all, your loved ones aren’t in your head. They don’t know your hopes, dreams, and values nearly as well as you do.

There’s also the question of how well anyone knows another person. Your family members likely have complex lives with multiple social connections, which can limit how much they see and understand.

In essence, any advance planning work gives families information to work with. That information mightn’t be perfect, but it’s still better than nothing.

Documenting your wishes becomes even more crucial if your original healthcare proxy isn’t available. Someone else may end up taking on the role and they may know much less about your wishes.

Advance Planning Sparks Conversations

Paperwork isn’t the only aspect of advance planning. It may not even be the most important one.

The process of planning also encourages conversations about end-of-life. You get to talk to family members and friends about what matters most to you.

These conversations often aren’t as stressful as they sound either. There are even tools to help you broach the topic easily, like Death Deck and Death over Dinner. You can also work with a death doula to approach the topic at your own pace.

Such conversations create the chance for deeper sharing and growth. You might learn more about your family members in the process, including their thoughts about death and what matters most to them.

Your conversations might even create deeper bonds and commitments within your family.

Advance Planning Helps with Emotional Preparation

The conversations you have don’t just help with planning. They serve a deeper purpose as well, by helping families come to grips with the ideas of serious illness and death.

Western society generally has a poor relationship with death. We often avoid the topic as much as possible and only address it when we can’t avoid it any longer. Advance care planning brings those conversations forward much earlier. It gives us the chance to consider what life and death means to us individually, in our families, and as part of a community.

There’s a surprising power in addressing this taboo topic.

For some, the conversations provide new meaning to life, helping them to think about what matters most and what they hope to do with the time that remains. The conversations can also draw families together. For example, siblings may choose to ignore their differences and work together to support an aging mother during the end of her life.

Such conversations can bring up strong emotions, including those of sadness and even grief. Yet, such emotions have their place too. By processing these during planning, it’s often possible to be more present and less overwhelmed when a family member is ill.

There’s an opportunity for processing any denial too, which can be incredibly powerful.

Plus, advance care planning is often completed before an individual is seriously ill. This gives people the time to process at depth, to have multiple conversations, and even work with therapists when needed.

Processing like this doesn’t make you immune to the challenges of the moment, but it can make things a little easier and help you be more present.

Final Thoughts

If you think of advance care planning as a way to control the future, you’ll probably be disappointed. Some wishes and hopes may be met, while you might not even get close to others.

Yet, getting things perfect isn’t really the goal. Instead, advance care planning helps us to talk about the things that matter the most and find ways to support each other through crucial end-of-life transitions.