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Family, doctors need to know what you want

As a nurse, Kim Von Asten of Dousman, Wis., knows it’s important to document how you want to be cared for at the end of your life, or when you can no longer speak for yourself because of a major illness or accident. She has seen too many families agonizing at a hospital bedside, trying to decide whether a loved one would want to be taken off life support.

But a few years ago, she realized she had multiple copies of her own advance directive “just laying around the house.” During routine visits, her doctor would ask if she had one. “I’d say, ‘Well, they’re at home somewhere, and I have no idea where I put them. Just give me another copy,’” said Von Asten, 52.

“Then I’d fill out that copy and who knows where I’d end up putting it. I finally thought to myself, if something ever did happen to me, I couldn’t find them, and my family would never be able to find them, either.”

Share your wishes

Like Von Asten, you may think you’ve done your duty by filling out an advance directive listing your preferences for end-of-life care — such as whether you want aggressive treatment or just pain management — and naming a relative or family friend as a healthcare agent to express your wishes.

But that may not be enough. You still need to make sure your paperwork will translate into reality. That means ensuring that your family fully understands your wishes, updating your directive regularly, and making the document easily accessible to those who need it.

“People think that, ‘Well, because my family knows what I want, I’m covered,’” said Judith Schwarz, clinical director of End of Life Choices New York, an advocacy and counseling agency. “But that’s often not the case at all.”

If you haven’t created an advance directive or named a healthcare proxy, or your loved ones can’t find your directive in an emergency, you run a higher risk that your wishes won’t be honored.

“Once you get caught up in the treatment train, it’s hard to get off,” Schwarz said. In an emergency room, she said, “the default position is to treat first and ask questions later.”

Fill out the forms now

If you don’t already have an advance directive, create one now — and share it widely.

An advance directive, which usually refers to a living will and a healthcare power of attorney, should document your preferences for medical treatment in an accident or at the end of your life, plus name a healthcare agent to make decisions on your behalf if you’re incapacitated.

You can download advance directive forms specific to your state from the National Hospice and Palliative Care Organization at https://www.caringinfo.org/planning/advance-directives/by-state/.

When you’ve completed your advance directive, make multiple copies, said Schwarz. Give them to family members and all the providers on your medical team. Keep your copies where they can be easily located.

Paramedics often are trained to check a refrigerator door for a do-not-resuscitate order — so if you have one, tape it there. “Your documents are like nuggets of gold to caregivers left wondering, ‘How do I do this well?,’” said Paul Malley, president of Aging with Dignity, a nonprofit that advocates for end-of-life planning. “You want to tell as many people as possible that you’ve made your decisions, and where your records are kept.”

If you’re a caregiver for someone who is seriously ill or frail, ask a healthcare provider about a “physician order for life sustaining treatment,” or POLST, form, in addition to an advance directive.

The POLST form is a medical order created with a healthcare provider so that medical personnel know someone’s wishes in an emergency situation. Your loved one can specify if he or she wants resuscitation or other life-sustaining treatment, hospitalization, comfort care or something in between.

In Virginia, you can download the forms at https://www.virginiapost.org. Washington, D.C.’s POLST forms are still in development at the District of Columbia Dept. of Health.

Maryland’s version of POLST is called MOLST, for “medical orders for life-sustaining treatment.” It is the same sort of directive and can be found at http://marylandmolst.org/index.html

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Discuss with family

Make sure your loved ones are clear about your wishes and that they are willing to carry them out.

Start by holding a family conversation that includes as many people as possible, including adult grandchildren, said Marian Grant, a palliative care nurse practitioner and senior regulatory adviser with the Coalition to Transform Advanced Care, a Washington, D.C., advocacy group.

State your preferences: Do you want to be kept alive on a ventilator? Are you willing to live in a nursing home?

Once you’ve shared your preferences, ask a trusted relative or friend to be your healthcare agent. Select someone who can handle the task, and discuss it with them in depth.

“The appointment is only as good as the conversation,” Schwarz said. “What you want is someone who will assume the significant responsibility, and decide as you would want, rather than as the daughter who doesn’t want her mom to die.”

Store in a safe place

Next, ensure your documents will be accessible when they’re needed. Despite technological advances, you can’t assume your paperwork will be recorded electronically with your medical records or shared with your doctors.

Methods for storing directives vary by state and by hospital system. In many cases, you’ll need to physically present your paperwork. Keep a copy in your wallet or car, or download it onto your phone.

You can store your directive electronically at the U.S. Living Will Registry (www.uslivingwillregistry.com) or DocuBank (www.docubank.com), and allow healthcare providers to access it.

Or create and store an advance care plan using MyDirectives, a free online service. You can use it to notify your healthcare agent, and he or she can accept or decline the responsibility.

You can also share a link to your plan with caregivers and relatives. Von Asten decided to use MyDirectives because she could better organize her documents and keep them in one place.

To be sure your wishes are honored, you or your health proxy also will need to be proactive — double-checking with surgeons, nurses and paramedics to be sure they have your directive or other documents in hand through every phase of your treatment.

In one instance, a daughter discovered that her father’s advance directive failed to accompany him when he was moved to a different hospital floor, said Malley.

Update as needed

Update your directive regularly, and give a copy to all those who had the prior version. And follow the advice of Charles Sabatino, an elder law expert with the American Bar Association, on when to update. He suggests using the “five Ds”: a new decade of life, death of a family member, divorce, new diagnosis or a medical decline.

© 2018, Kiplinger. All Rights Reserved. Distributed by Tribune Content Agency, LLC.