At our law firm, we have always strongly urged our clients to consider their end-of-life wishes when we counsel them. To that end, we have used the completion of an Advance Directive as a focal point. Even more important, we have advised them that the signing of this important document is only a first step.They must communicate with their loved ones about their values and how they want them expressed when they can no longer make decisions for themselves. We all have stories about end-of-life care that didn’t honor the way people chose to die, leaving loved ones feeling guilty and regretful. Clearly we need to be able to communicate effectively the kind of care we want and don’t want well before we find ourselves at the end of life.
This conversation (or series of conversations) is extremely critical in order to have the hope that our care at this juncture of our lives is the way we want it.
In addition to that important conversation, there is another very important conversation we should have with those who care about us.
That conversation must emphasize our desire to secure and maintain the highest quality of life possible during whatever phase of life we are in. That means letting your loved ones know that you will need them to help you through illnesses and injuries. And that this help will need to take the form of supporting you through the maze that is our medical system. That could mean everything from being an extra set of ears at the doctor’s office, to vigilance at the hospital bedside.
That means becoming knowledgeable and asking lots of good questions throughout our lives — on our own behalf and on behalf of loved ones.
That means partnering with our health care professionals to make the wisest decisions about tests and treatments.
The advance directive is not just applicable at the end of life. It matters whenever the signer does not have decision-making capacity. In addition, if you’ve signed an Advance Directive, you’ve gone through the process of choosing a trusted person to make decisions for you when you cannot. So that person might also be an appropriate choice for an “every day” advocate or health partner. The agent, then, may not only be the legal decision maker, s/he most productively could also be an advocate, interpreter, analyzer and spokesperson. Good medical care requires your involvement as long as you’re able, and it requires the help of an advocate. You together with that person (or another friend or family member — or even a community of people willing to help) can help you in a variety of ways — from getting an accurate diagnosis, knowing whether a medical test is a good idea, understanding treatment options, to preventing errors that can harm you. A growing body of evidence shows that patient outcomes improve when patients and their loved ones more actively participate.
Especially in the hospital setting, the presence of an advocate can mean the difference between making end-of-life decisions in the short term — or making them many years down the road.