The Limitations of Advance Care Directives – And What You Can Do

Advance care directives are powerful tools. They allow people to specify what they want to happen to them, when they are no longer able to make decisions for themselves.

Doing so is especially important as people age – as health crises can emerge quickly.

Some seniors may want every step taken to save their lives. Others would much rather slip into the night, especially if the alternative is to be intubated or to live attached to machines.

Taking the time to think about advance care directives is critical. But, having one in place isn’t the end of the story.

Advance Care Directives in Practice

Hospital and healthcare environments are complicated, fast-paced and messy. This is bad news for any type of advance planning.

In many cases, the wishes of the patient simply get lost in the shuffle.

Doctors and nurses often have a very narrow window to respond to an emergency when one occurs. There mightn’t be time to call family members or consult the patient’s physician, especially if no one is readily available.

Even if there is time, the staff will have other things on their mind.

There are countless stories of precisely this situation. Stories of people who have gone through procedures that they never wanted – because the people conducting them didn’t realize until it was too late.

Sometimes, these stories happen because the patient missed a step. Perhaps they never filled in paperwork or didn’t make their wishes clear.

But, all too often, they occur because of the systems in place. Even when every step has been followed – the right people might not know at the right time.

That’s exactly what happened in the case of Beatrice Weisman, who was resuscitated against her express wishes. There are many other examples too.

But, why?

One reason is simply the rush of the hospital environment. There is so much going on and a large amount of urgency.

Another is where the advance care directive is stored. It might be in the electronic health records (EHR) or in patient’s medical chart. Either way, the information often gets missed. In many cases, it’s simply not on hand when a medical emergency occurs and there isn’t the time to look.

Steps Caregivers Can Take

There is always the risk that advance care directives will be ignored or simply not seen. Even so, there are things that you can do. These help ensure that the documents are in the right place and that the right people know about them.

1. Communication is Key

It’s important to promote communication with your family member and also with their medical team. You need to be sure that everyone is on the same page and that they’ve all seen the relevant documentation.

This also involves sitting down and talking to your family member about what they want and how they want to proceed.

Without this process, mistakes can occur. For example, some people find that their family members set forth advance care directives but didn’t talk to them about it. That’s a problem. In an emergency situation, the family is often asked long before documents are examined. If the family doesn’t know the patient’s wishes, things can go wrong quickly.

2. Overcommunicate with Staff Members

If your family member is in assisted living or a hospital environment – the people they interact with may well be involved in responding to any crisis or emergency. The more that they know about the patient’s wishes, the better chance that someone will read the advance care directive at the right time.

For many caregivers, this means persistently talking about the patient’s wishes, even to people who already know.

Indeed, healthcare staff often state that conversations with family members are critical. Such discussions have a strong impact on care, much more so than a document ever could. And, in a time of crisis, the family will be turned to first.

3. Get the Paperwork Right

Expressing wishes isn’t enough. There is often paperwork that you need to fill out. This is particularly true for advance care directives but it applies to other types of advance planning as well.

To do this, you’ll need to talk to medical staff about what is required. It’s often worth obtaining advice from an expert as well. They’ll be able to tell you whether you’re on the right track or whether you’ve missed anything vital.

4. Keep Seniors Out of Hospitals

When seniors are in a stable environment, there’s a greater chance that their wishes will be known and respected. In part, doing so simply involves promoting health and keeping them out of hospitals. This includes areas like good medication management, eating healthily and preventing falls.

But, this is also a reason to consider a nursing facility or assisted living, if the need exists.

Seniors will often be resistant to such ideas, partly because facilities imply a loss of independence. But, the extra support such locations provide does help to reduce the risk of health issues. In the long-term, this can help seniors to remain independent for longer.

It also means that if a crisis does occur, there are people on hand who already know the needs and wishes of the senior. This helps ensure that any advance care directive is followed, even if the senior does need to go to the hospital.

5. Be Prepared

And finally, just be prepared. Advance care directives are useful tools but they’re not perfect.

There will always be some cases where they are not followed. After all, healthcare professionals focus on saving lives first and foremost – and the current systems for advance directives aren’t as good as they could be.

This means that some people will simply fall through the cracks, even if they do everything correctly. Focusing on communication and keeping seniors out of hospitals will help, considerably. But, this isn’t a complete solution.