MANAGING CARE( continued)
Understanding Advance Healthcare Planning Diane Breslow, MSW, LCSW
CurePSP is committed to providing its constituents— patients, families, caregivers, and healthcare providers— with up-to-date educational information about topics relevant to living with neurodegenerative disease.
It is of utmost importance that patients understand the disease and its potential treatments, decide their wishes for future care— including end-of-life care— and discuss these wishes with their family.
The earlier in disease progression these topics are addressed, the better for everyone— patient, family, and healthcare providers. The benefits of Advance Planning are many-fold— for example: a comfort or freeing-up feeling in having decided one’ s plans for possible disease complications; diminishing of fears through the course of the disease; and helping the family and the team stay on the same page in their ability to honor and carry out the patient’ s wishes.
This article will help you recognize possible late-stage treatment options for neurodegenerative disease, as well as understand the various kinds of planning documents.
Education about Advance Directives: Making the Case
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A 1997 study in the Annals of Internal Medicine( Hoffmann et al.) found that most people do not communicate in advance to their families and healthcare providers their wishes about treatment. Research published in the July 2017 issue of Health Affairs demonstrates that statement is still true. In fact, only one-third of adults in the United States have advance directives( ADs). Furthermore, people living with chronic illnesses were only slightly more likely than healthy individuals to express their wishes in written documents.
Research studies consistently report that receiving education about advance directives significantly results in increased completion of such documents.( JAMA 1994, University of Massachusetts Amherst College of Nursing 2013, General Medicine 2014, Journal of Pain and Symptom Management 2017, among others).
It is up to each individual to decide if and how they want to think about their medical destiny. Education is key to ensuring that medical-legal issues are discussed, understood, and acted upon.
Myths and Facts about Advance Directives
Myth: Federal law requires that every person have advance directives. Fact: The Federal Patient Self-Determination Act of 1991 obligates healthcare institutions and professionals to ask patients if they have advance directives and to provide information and education about advance directives.
Myth: Most seriously ill patients have discussed cardiopulmonary resuscitation( CPR) with their doctor. Fact: Most patients have not discussed CPR with their physician. Yet, the vast majority want to have this discussion.
Myth: An attorney is required to complete one’ s advance directives. Fact: Legal forms are required, but the services of a lawyer are not. The conversation is best started with one’ s physician and closest family members or trusted person. An attorney can be helpful in drafting personalized documents.