Did you know that April 16 the annual National Healthcare Decisions Day? The mission of National Health Care Decision Day (NHDD) is “to inspire, educate and empower the public and providers about the importance of advance care planning.”
Why do we need a day to highlight the importance of making healthcare decisions in advance? Because despite the fact that some 71% of Americans have thought about their end of life preferences (Pew Charitable Trusts, 2006), very few have actually put them in writing or discussed with their family, healthcare providers, and other caregivers what those preferences might be in the event that the individual cannot speak for him/herself. I always tell my patients, let’s have a conversation about this BEFORE we have a crisis.
Even more worrisome is WHO actually completes advanced care planning documents. Individuals who complete living wills and healthcare proxy tend to:
- Be at an older age
- Are white
- Have a history of chronic, life threatening disease such as AIDS or cancer
- Have a high disease burden
- Have a higher socioeconomic status
- Have some prior knowledge of advanced care planning and end of life care
- Have high education levels
This reinforces disparities in the provision of end of life care to ALL individuals, regardless of age, race, class, education and disease burden.
Like voting, freedom of religion and freedom of speech, it is OUR RIGHT to exercise these decision-making powers, as well as our obligation to provide guidance to those who might have to make healthcare decisions on our behalf. NHDD emphasizes “expressing preferences, clarifying values, identifying care preferences, and selecting an agent to express healthcare decisions if patients are unable to speak for themselves.”
So, what can you do? Here are some easy steps:
- Think about your values and personal feelings about end-of-life care.
A great resource to help you take an inventory of your end-of-life care values can be found here.
- Talk to your healthcare providers and your family about your values and wishes for end of life care, even if you are not sick.
- There are great resources available to help you have these conversations including:
- Put it in writing:
- Resources for completing a state-specific advance directive can be found here.
- You do not need an attorney to complete these documents.
- Oncology Social Workers can assist with completing your documents.
- In many states, notarization is not required.
- Have a copy of your advance directives scanned into your electronic medical record or copied into your chart.
- If you are admitted to a hospital, take a copy of your advance directive with you.
- Provide decision-makers with copies of your advance directive.
- Make sure you discuss your wishes with your decision-makers before a crisis occurs so they will feel comfortable carrying out your wishes.
- Keep your copy in an easily accessible place and tell loved ones where it is.
- Review and revise your healthcare directives on a regular basis (every 5 years or with a major change in medical status).
Talking about the end of life, dying and death certainly isn’t the most pleasant conversation to have; but it is essential. Taking action to make your wishes known is empowering and helps healthcare providers to “do right by you.” So take some time on April 16 to start thinking about your own wishes and make an action plan to share with those who care about you. If a healthcare crisis does arise, you, your family, and your healthcare team will be that much better prepared to deal with the crisis.
Learn more about advanced care planning.
One thought on “National Healthcare Decisions Day “It Always Seems Too Early, Until It’s Too Late.””
Recently introduced to Oncolink site, unfortunately by emergency room physician as she was going over my lab results & discussing the critical stage my hands were in due to my chemo infusion of Adriamycin/Cytoxan. She could not understand how I let my hands get to as she referred level4 (scale only registers 1-4). Yet to reply, she continues on to inform me that I’m anemic, potassium deficient, red & white counts too low, urine indicated UTI, and on.., all the while a nurse was wrapping my hands entirely in gauze. As she finally pauses at the end of her diatribe & awaits my response, I sit in utter silence, the guilt, over 4 months of gut wrenching, and many sleepless nights worth. My confession, I have no healthcare insurance. A 46 year old, with a college education, a daughter away at college, me with aggressive breast cancer. Reading your blog reinforced my reality of unpreparedness. Continue to speak on these life altering issues. This topic is so important. Unfortunately, this is now my reality.