People don’t usually consider getting married, having a baby, or retiring without a detailed plan in place, yet many of us approach aging, illness, and death without having made even basic decisions—called advance care planning—ahead of time.
One reason is that there are so many misconceptions surrounding this highly charged issue. So what are some of these myths, and what is the reality?
Myth: Advance care planning just means filling out “those papers.”
Reality: “Those papers,” called advance directives, include a living will, which explains what treatment you want or don’t want, and a durable power of attorney for health care, which designates someone else (often a family member or close friend) to make medical decisions in case you are unable to do so. In contrast, advance care planning is broader in scope and involves not only those legal documents, but also information on your life goals and values, your views on aging in place, any plans for long-term care, if needed, and your wishes for services and burial.
Myth: Once those advance directives are signed, they can’t be changed.
Reality: Advance directives can be changed at any time; they should be reviewed regularly and updated whenever major life changes occur. A lawyer doesn’t need to be involved either to execute initial directives or to revise them.
Myth: Having advance directives means getting no treatment and losing control over decisions about your care.
Reality: Advance directives involve making choices about future medical care to ensure that the care you want is the care you actually get. As long as you can make decisions, you call the shots. Advance directives come into play only when you can no longer speak for yourself.
Myth: There’s more talk lately about palliative care. That’s just a nice term for hospice.
Reality: While it may precede a hospice referral, palliative care is a distinct specialty that treats the symptoms of serious illness regardless of the diagnosis and it is often provided together with treatment aimed at a cure.
Myth: Advance care planning is just for elderly or very ill people.
Reality: Tragedies happen to even young and healthy people, so every adult should have advance care planning in place. Family members and health care providers should be made aware of those plans.
Myth: There isn’t a lot of helpful information out there about these issues.
Reality: Increased attention has been focused on making your wishes known ahead of time. Social workers can provide a wealth of information, as can the Coalition for Supportive Care of Kidney Patients (www.kidneyeol.org). This Web site is full of practical information and help for both patients and professionals. Numerous links to other resources are provided as well.
David Kuhl, in his book What Dying People Want, says that “we are afraid that talking about death beckons it.” Nothing could be further from the truth. The reality is that advance care planning relieves stress on families, can prevent disagreements, informs the health care team of your wishes, and, most important, leads to peace of mind not only for you, but also for your loved ones.
About the Author
Denise Eilers teaches nursing and was her late husband’s home hemodialysis care partner for 25 years. She is involved in several kidney organizations, both professional and patient focused.
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