Stop me if this sounds familiar:
You’re going into the hospital for a so-called “routine procedure” (sure, maybe it’s routine for them!), when suddenly one of your nurses is asking about your advance directive.
A glimpse into your internal dialogue: “Um … I thought this was routine? Why do I need to make decisions about end-of-life care?”
If you haven’t been in that situation yet, you probably will be on your next visit, whether it’s for a colonoscopy, a minor surgical procedure, or even the birth of a child. And while it may feel awkward to think about what care you want (or don’t want) to have when you’re sick, injured, or dying, the best, least upsetting time to make those decisions (and to make sure your loved ones know about them) is now – while you’re well.
Advance Directives: It’s Never Too Early to Begin the Conversation
Advance directives give health care providers instructions about what you want them to do if you can’t speak for yourself.
Because unexpected situations can happen to anyone at any age, all adults need advance directives.
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If you’re hospitalized because you’re seriously sick or injured and can’t speak for yourself, your health care providers will ask your closest relatives or friends to help them decide how to proceed with your treatment. Sometimes loved ones don’t agree about a family member’s care, and that’s why advance directives are important — they tell others about your choices for health care when you can’t.
Dr. Judith Black, Medical Director for Highmark Senior Markets states, “I have seen families in situations who have been called upon to make treatment decisions for a loved one and had no idea what that person would want. This includes families of both older adults and those who are considered to be in the ‘prime of their lives.’
“For example, a 50-year-old husband and father was seriously injured in a car accident. The man was in the ICU, unresponsive and breathing with the assistance of a ventilator. It was unlikely there would be any improvement.
“The family had never had conversations about what any of them would want in such a situation and he had never completed an advance directive. When decisions needed to be made about further treatment, the wife and adult children were very conflicted. Would he want to be maintained on a ventilator with a feeding tube, possibly undergo CPR or would his choice be comfort without trying to prolong his life?”
Getting to Know the Documents: Living Will and Power of Attorney
These two documents are used to communicate your health care instructions:
- Living Will: Gives instructions for medical care if you become ill and are not able to express your wishes, such as which life-sustaining treatments you would want or not want
- Health Care Power of Attorney: Names a family member or someone else you’re close to as a “health care agent” or “proxy” to make decisions about your care if you become unable to make those decisions.
Remember: It’s your choice whether you want to fill out a Living Will and Health Care Power of Attorney, including whether you want to sign one or both if you are in the hospital.
Each state has its own versions of the forms you’ll need to fill out to complete your advance directives. Most of the time you’ll find both a Living Will and Health Care Power of Attorney on the same form. You can find your documents online, or get the appropriate forms from your doctor, your hospital, your lawyer, your state’s bar association, or organizations such as the National Hospice and Palliative Care Organization.
Once you’ve filled out the forms, give copies to your doctor, the person you’ve chosen as your health care agent and your family members. Keep another copy in a safe but accessible place. You might also want to keep a card in your wallet that says you have advance directives and indicates where to find them.
Myths and Facts about Advance Directives
Illness and mortality are uncomfortable topics, so there are plenty of myths out there about end-of-life planning. Let’s bust ‘em.
Myth: I’m young, single and healthy, so I don’t need advance directives.
Fact: Becoming incapacitated, even temporarily, can happen to anyone at any time. Advance directives provide peace of mind for the unexpected. What’s more, you may have loved ones who are older or are ill, and it’s important that you know what their choices are in case you have to make decisions for them.
Myth: Advance directives always make all my health care decisions for me.
Fact: Advance directives spell out your choices when it comes to care if you’re terminally ill or at the end of your life. They only take effect when you’re too ill or injured to speak for yourself.
Myth: If I have advance directives, doctors will stop treating me, or not treat me at all.
Fact: Advance directives are not orders to “pull the plug” on you. It’s against the law for doctors, nurses or hospitals to deny you care or discriminate against you based on whether or not you have an advanced directive. If you are in palliative care or hospice, you may be able to also receive treatment.
Myth: I can’t change my mind about end-of-life care once I fill out the forms.
Fact: You can change or cancel your advance directive at any time.
Myth: It costs a lot of money and takes a lot of time to get advance directives.
Fact: There are many free, easy-to-use forms for advance directives available. In some states, you may need to have them notarized.
Myth: My loved ones already know what I want when it comes to health care.
Fact: In an emergency, your loved ones may not remember your wishes, and your loved ones may disagree on the best course of treatment. What’s more, your wishes need to be in writing for them to be legally recognized.
Myth: I only need advance directives if my life or health insurance company tells me I need them.
Fact: You cannot be required to fill out advance directives to buy or keep life or health insurance, and it cannot affect your rates. No matter what insurance you have, though, advance directives are important.
Beyond the Paperwork: Have these Conversations
You’ll need to talk to your doctor about the choices you may have to make about your care, as well as the benefits, risks and burdens of treatments you may have.
You may want to talk to your lawyer about which forms you need, who should have them and what to do to make sure they’re legally valid.
Most important:
Talk to your family and friends about what’s important to you to live life on your terms.
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Ask your family and friends about their choices, too, and how they want their choices to be respected.
It probably won’t be the most upbeat conversation you’ve ever had, but that’s because we’re all human and death and dying aren’t our favorite topics. Check out The Conversation Project for a helpful toolkit you can use as a guide.
Dr. Black says she’s seen the relief it can bring to a family when they know what Mom, Dad, or another loved one wants in terms of care as they near the end of their life.
“I recall one patient who had spoken and documented her choices for care at the end of life, when she was still in the early stage of Alzheimer’s disease. When her condition progressed to where she was no longer able to eat, her family knew she would not want a feeding tube or a hospital admission. She died under the care of hospice with all effort being made to keep her comfortable. Her family was at her side, knowing they carried out her wishes.”