Talk to Your Loved Ones and Doctors about Advance Care Planning

Isaac Asimov said, “Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.” 

But what if that troublesome transition could be avoided or lessened just by communicating effectively
with your loved ones?

Whatever your age or physical condition, now is the best time to have “the conversation” with your loved
ones and your doctors about advance care planning.

Advance care planning is a process where you communicate with your loved ones and care providers
to make sure the treatment and care you receive is aligned with what a good life looks like to you,
especially if you are unable to speak for yourself. It isn’t always easy, but it is important to make sure that
you are cared for and treated in a manner consistent with your wishes should you become seriously
incapacitated or nearing the end of your life – or both.

 “The conversation,” is the most critical part of advance care planning (ACP) and can remove some of the
challenges when you are seriously ill, and even when you are dying, and make that time of transition more
about what it should be – living.

Advanced care planning is a process that involves reflecting on your goals, values, and treatment preferences in the context of your current health and possible future situations and communicating those goals to loved ones and doctors; identifying someone to make decisions on your behalf in case you can’t; documenting your decisions; and revisiting these goals, values, and preferences as circumstances and feelings change.

You've likely heard of some of the most common advance care planning documents - living wills, health
care proxy, advance directives – and the recently available POLST (Practitioner Order for LifeSustaining
Treatment). Keep in mind these documents are valuable only to the extent that you've clearly talked to
loved ones and healthcare providers about what is in them.

The types of decisions you might wish to make as part of the advance care planning process
include:

• Determining who will make decisions on your behalf.
• Identifying what a good life looks like to you. For example, what you want to be able to do (gardening, listening to music, communicating with loved ones) or religious beliefs that should be followed when making health care decisions
• Establishing goals of care. For instance, do you wish to receive aggressive treatment so you can hit a particular milestone (graduation, birth of grandchild) or do you wish to receive treatment for only so long as you are living your definition of quality of life?
• Whether you want specific treatments, (for instance, a feeding tube).
• Defining what type of physical space you want. Do you want music or total silence? Do you want lots of family in attendance or very few? 

There are some very good reasons for you to begin this discussion now. Here are a few of them:

• You will be prepared. When a crisis hits or a critical decision has to be made, you will have an advantage. You will have a blueprint, conceived of and created by you, to help you and your loved ones make difficult medical and ethical decisions about your care.
• You will be a pioneer. While it has been reported that 33 percent of Americans currently have an advance directive, only 16 percent of New Jersey residents are similarly prepared. 
• You will strengthen the connection with those closest to you. During “the conversation,” you and your loved ones will be talking about your values, your goals, and the things that make your life worth living - some potentially deep emotional terrain.
• You will protect those you love. If you have not clearly explained the care you want or don’t want, the people you love will be forced to guess. One study showed that 63 percent of surrogates didn’t know what their loved one wanted. Studies also show that surrogates who had to make decisions without any guidance from their loved ones had higher levels of stress and more frequent, prolonged bouts with depression.
• You take control. “The conversation” will lay out your priorities, values, and goals so your proxy can make decisions consistent with them.

The consequences of not having an advance care plan are significant. For instance, despite the fact that 70
percent of Americans surveyed say they want to die at home, the reality is that only 30 percent actually do.The importance of advance care planning has become a frequent topic in the media including recent segments on ABC News, Oprah, NBC’s Rock Center, and Good Morning America. So it’s likely that the people closest to you will have heard about it.

And you don’t have to start from scratch: many “how to” resources exist to assist you in this process. Materials and information are available through The Conversation Project, The American Bar Association, Engage with Grace, and Five Wishes, among others.

Many of these tools are available for free.

So, be a pioneer, be prepared, connect with and protect your loved ones, and take steps to live your life on your terms until the very end.

Go ahead, have that talk –today.

Additional information about Advance Care Planning resources is available at www.nj.gov/ooie/helpful/yourcareyourchoice.html.

This article appeared in several daily newspapers in New Jersey in advance of National Health Care
Decisions Day on April 16.