By Sue Malter
The best gift you can give the people you love is an honest and unflinching discussion about death and end-of-life choices. It’s not something you want to talk about or they want to hear. That’s what makes it a priceless gift.
In 1990 Congress passed the Patient Self-Determination Act giving Americans the right to refuse any medical treatment, including ventilators and feeding tubes. Twenty-three years later, it is estimated that between 19 percent and 36 percent of Americans have completed an advance directive stating the medical treatment they would want at the end of life. We’re more likely to talk to our kids about safe sex and drugs than to talk to our parents about end-of-life care. We tell ourselves it’s too soon, until one day we realize it’s too late.
Because I work for a hospice, I urge people to have that conversation before there is a crisis. I have seen firsthand the anguish, pain and cost that can result when patients no longer can tell their loved ones what kind of healthcare they want or which “heroic measures” they find acceptable.
Nearly half of Americans say they would rely on family or friends to carry out their wishes about end-of-life care, but most have never expressed those wishes. Some would want all that medical technology has to offer; others would opt out if their quality of life were seriously diminished.
The best way to get others to discuss end-of-life care is to do so yourself. Start by considering the following:
- If you had a terminal condition and there was no reasonable probability of recovery, what kind of treatments or life-saving measures would you consent to or refuse?
- If you weren’t able to speak for yourself, would your loved ones know what you want?
Finding out what choices you have takes a little research, but information and simple, thought-provoking advance directive forms are available free on the Internet, in doctors’ offices, from hospitals and hospices. California has no single form to document your wishes; we use the Five Wishes booklet and California’s Physician Order for Life-
Sustaining Treatment (POLST). Here are a few links:
- California Probate Code Sample Form (PDF)
Once the initial decisions are made—and they can be changed at any time—filling out the forms is not difficult and does not require a lawyer. Then, use them. Make copies. Let others know.
“Add a copy of your directives to your medical records,” suggests Stephen Axelrode, MD, medical director for VITAS Innovative Hospice Care of Los Angeles and Ventura County. “Give them to your family and friends. If you are admitted to the hospital, take a copy with you.”
But it is the conversation that likely will get the ball rolling. Talk to your loved ones—briefly, in depth, once, frequently, lightly, seriously—about your wishes. Don’t wait for the subject to come up; take control. Include children and parents when possible. And don’t stop with one conversation. Introduce follow-up conversations to answer questions or raise new issues.
Milestone events—weddings, anniversaries, birthdays, retirement, graduation, a downsizing move—and holidays are great times to hold what-if conversations. Announce your subject in advance, keep it light, encourage everyone to air their thoughts. Make it clear that these are personal decisions that must be honored by all.
Often this is enough to get others to respond with their own what-if conversations. If it doesn’t, initiate the conversation again. Take it slowly if there is resistance, but return to the conversation; it might be easier next time. Have California forms on hand; know what local services, such as hospice, are available. Include a trusted social worker, religious adviser or friend if that would make the other person more comfortable. And know that you are offering someone you love a priceless gift.
(Provided by VITAS Innovative Hospice Care, which offers hospice care to patients and families in Los Angeles, Ventura County, the San Fernando Valley, San Gabriel Cities and Coastal Cities. Go to VITAS.com/California.)