Make your wishes known

Five years ago, as the nation watched Terri Schiavo’s husband and parents battle over whether to remove the Florida woman’s feeding tube 15 years after she fell into a persistent vegetative state, calls rolled into the National Hospice and Palliative Care Organization from people hoping to avoid similar fates. They wanted to learn about advance care directives, which allow you to make your health care wishes known for those times when you can’t speak for yourself.

“We mailed or emailed literally thousands of (advance directive) forms a day,” remembers Kathy Brandt, senior vice president in the office of education and engagement at the organization, a nonprofit dedicated to improving end-of-life care.

Still, Brandt said, studies show that just 25 to 30 percent of adults have written documents guiding their health care if they lose the ability to make decisions or communicate themselves.

“I think part of it has to do with our society’s reluctance to confront and think about death and dying,” Brandt said.

Who should have one?

People tend to confront end-of-life questions only when they’re elderly or faced with terminal illness. But experts say all legal adults should complete advance directives.

“The most famous cases (of end-of-life care dispute) have been young women who were in the prime of their lives until they were in an accident,” Brandt said. “You want protection for yourself, your loved one and your entire family.”

Without advance directives, the danger is that important medical decisions will be left to a physician who is unaware of your values, beliefs or preferences, or to a legal next of kin who doesn’t know your wishes, while your best friend, who knows far more about you, is legally powerless to intervene. There are two main solutions: Composing a living will and a appointing a health care power of attorney, documents known as advance directives.

What they do

A living will and a health care power of attorney are related but work in different ways.

In a living will, you describe your goals for medical treatment, your religious or spiritual beliefs, and any guidance you wish to give regarding your treatment in various circumstances. It can also contain your wishes about what your family should do with your body after your death, including organ donation, autopsy, burial or cremation and other funeral arrangements.

A health care power of attorney permits you to name a health care proxy, or agent — a person who will make medical decisions on your behalf if you’re unable to make them yourself.

You trump all documents.

As long as you’re able to make and communicate your decisions, your word supersedes anything you’ve written or said to others. An advance care directive goes into effect only when you’re unconscious or too ill to make your wishes known, and once you recover from the incapacity, what you say takes precedence over any document.

But first things first.

If you choose to have both a living will and a health care proxy, name a health care proxy first to ensure that someone can act in situations not covered in a living will.

How to make one

Advance care directives are not difficult to create.

You can write one up on your own, without a lawyer’s help. Some states require a notary, but others just require a witness or two to sign the document.

Get the proper form.

The information that’s required for an advance care directive differs from state to state. To download the correct forms for your state, go to Caring Connections, a Web site of the National Hospice and Palliative Care Organization, at caringinfo.org.

Keep one copy, hand out the rest.

Once you’ve completed your living will and health care proxy form, keep the originals at home in a safe place, and give copies to your proxy, alternate proxy and physician (who should keep the copies in your medical file along with notes about any conversations you’ve had and your proxy’s current contact information). You can also give them to neighbors and trusted friends.

Important:

You can also print out a card (putitinwriting.org) to put in your wallet to notify medical personnel of your proxy and their phone number, or existence and location of a living will. Do not keep your advance directives in a safe or safe-deposit box where no one has access.

Update every few years.

Laws can change. If you get married or divorced, if you move states or if you have a change in health, update your forms, Brandt said. If you want to change something on a form, just rip it up and write and date another one. Health care providers will honor the documents bearing the most recent date.

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Dr. Celeste Robb-Nicholson with Harvard Health contributed to this report.

How to pick a health care proxy

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What they’ll have to do: Your health care proxy is obliged by law to make decisions that she or he thinks you would have made. Kathy Brandt with the National Hospice and Palliative Care Organization advises that this person be someone who:

You trust

Communicates well

Is strong enough to stand up for your wishes

Most people choose:

a spouse, partner, adult child, or close friend

One or many?

It’s best not to appoint more than one (and in many states it’s illegal to do so) because all of them would need to agree on every decision. But do appoint an alternate proxy in the event your proxy is unavailable when needed. You can also instruct your proxy to consult others.

Touch base.

Talk to your proxy about medical treatments you may or may not want and about how your religious or spiritual beliefs and personal concerns shape your treatment preferences in various situations. If you have a living will, go over it with them.

Keys to writing a living will

Scope:

Be careful in describing your wishes, because it’s impossible to know all the variables that might affect a future decision. For example, if you say you don’t want to be tube-fed under any circumstances, you might be lowering your chance of recovery from a temporary health setback. Living wills generally cover certain procedures that might be performed when a person is incapacitated or at the end of life, including tube feeding, resuscitation and mechanical ventilation (breathing machine).

Talk to your doctor

After your health care proxy, your primary care physician is the most important person to talk to about your advance care directives. A physician who disagrees with your wishes doesn’t have to carry them out, but she or he is obligated to find another clinician who will.

Resources

Caringinfo.org

Putitinwriting.org

Agingwithdignity.org

Abanet.org/aging/toolkit