Putting the “Care” into Advance Care Planning

Planning is Complicated

Advance care planning is finally taking hold. People are waking up. They want to plan ahead for their care. That’s good. If they plan now, they’ll be prepared if they can’t decide for themselves. Then their loved ones won’t have to guess what they wanted.

But is the healthcare system ready to respond? Who’s going to help people make these plans? The path of chronic illness is long and twisted. Who will follow them to track their preferences when they change? Who will be there to update the plan?

Then there’s the big question: who will make sure their plans are followed no matter where they show up for care, and no matter who lays hands on them?

More people know they should make plans. But what they don’t know is that their plans may fall through when they’re needed most. Glitches happen. Time passes, choices change, advance directives get lost, or they don’t show up in the Emergency Room with the patient. Even when they do, the system doesn’t follow instructions. People still get treatment they don’t want. And the cost is high — in pain, disappointment and dollars.

Here’s the problem: what we call “advance care planning” is not enough. It’s just a first step. By itself, it does not get the job done.

On top of that, the strategies we’re using are out of date. We twist doctors’ arms to get them to start “difficult conversations.” Depending on doctors to change their behavior is always tricky, but it’s really difficult here. Many physicians don’t have the time, training or desire to help with planning.

When these conversations happen at all, they are one-shot discussions. But advance care planning is more than a quick chat with your local doctor or hospitalist. It’s a process, and it takes time. Still, Congress’s policy ideas revolve around paying doctors more to hold these conversations.

Another problem with current strategies: what’s the goal? It’s pretty simple: a signed document. Maybe it’s a do-not-resuscitate (DNR) order. Maybe it’s an advance directive of some sort. Maybe, in some states, it’s a Medical (or Physician) Order for Life-Sustaining Treatment (MOLST or POLST form).

A signed document is important, especially if it includes a decision maker who knows what the person would want. But again it’s not enough. It only registers what that person was thinking at one point in time. Often it’s before they’ve had any experience of serious illness. Then it’s just a product of their imagination, not of their living.

Advance directive documents are basically a snapshot pulled out of the movie of life. But movies involve drama, and so does advancing illness. The plot always changes before the credits roll. People hope that what they planned for early in the movie matches the plot at the end. But sometimes that’s wishful thinking.

Real advance care planning takes advantage of the time course of chronic illness. It needs to start early, but then it needs to continue. The process works better when it’s not rushed. People grappling with serious illness need to make plans at their own pace, taking as much time as they need.

Trained staff can help them with this process. It’s complicated. There are many steps. People and their families need to learn about their illness, because their doctors don’t tell them. They need to know where they are headed, what is likely to happen as their illness takes its toll over time. Above all else, they need to understand and accept that the end of life is coming. They need to know this in the depth of their hearts, not just at the top of their minds.

These are hard lessons. They are best learned step by step, with help and support. This learning happens most easily in the safety and comfort of home, not in the battle zone of the hospital. This learning takes time, and it takes care. In fact, this is what real health care should be about. Someday it will be.

The delivery system for this kind of advance care planning is actually here. But it only exists in little pockets, dotted here and there across the country. Health systems and health plans are just beginning to learn about it. It’s called Advanced Care.

With Advanced Care, doctors still start the discussion. But then they hand it off to trained teams of care managers who form a trusting relationship with the person, their family and their caregivers. The doctor directs the team, and the team makes sure the discussion keeps going forward. This conversation moves only as fast as the person wants to go. The lessons are learned only if and when the person is willing to learn them.

In other words, people are free to go down this path of learning if they choose. Or they can stay where they are. It’s their choice.

The goal of this process is not just a signature on a piece of paper. The real goal is awareness. Only when people are fully aware can they make truly informed choices. But to be fully informed, they need more than information. They need to become intimate with their own feelings, not just the facts. They need to become aware of their own inner world. Awareness about the medical things is not enough. They need self-awareness too.

A trained and trusted team makes this process of growing awareness as safe and comfortable as possible. And the team never leaves. They stay with the person, because awareness never stops growing. And the need for care never goes away.

Someday our healthcare system will provide this kind of caring to everyone who is ill. Then we will be doing real advance care planning. Only then.