Will My Advance Directive Be Followed?
You have soul-searched and taken the time to think about how you want to live while dying and come to terms with how you would like your dying to be managed. This is not an easy or quick process; for some this journey may take years.
The question “Will my Advance Directive be followed?” This is a real and valid concern that many individuals express apprehension about. Hopefully, you have a healthcare surrogate or proxy who is willing to standby, and advocate on your behalf. The advocacy by the healthcare surrogate or proxy is vital in ensuring that your wishes are honored.
In the recently published article Association of Physician Orders for Life-Sustaining Treatment With ICU Admission Among Patients Hospitalized Near the End of Life in JAMA reported that advance directives entered by physicians, based on the individual’s wishes, were not followed in almost 40% of patients with a terminal illness. Unfortunately, these individuals with chronic life-limiting illnesses who had advance directives, had their wishes were ignored, leading to unwanted aggressive care.
So what does this mean for you? There is no substitute for a healthcare surrogate/healthcare proxy with strong advocacy skills, and a commitment to ensuring that your wishes/values are respected. Your clearly articulated Advance Directive needs to be readily available, and your advocate must be ready to speak up on your behalf.
I have an Advance Directive, Now What?
The Advance Directive is a document that speaks for you when you are not able to share your medical care wishes. It needs to be readily available and visible, to emergency medical responders or caregivers. Your healthcare surrogate or proxy may not be present to alert those that need to know of your wishes, leading to medical care you may not want. The desire to keep Advance Directive documents secure has resulted in them often being place in bank safety deposit boxes, vaults, safes, file cabinets and other secure hiding places making them unavailable in time of need.
Making my Advance Directive Available
There are a number of registries that provide a platform for you to upload a copy of your advance directive. Some are State-based; others are commercial such as the U.S. Living Will Registry (now known as the Advance Care Plan Registry). These registries make your Advance Directive available around the clock to those with the appropriate access to the information and protect them against theft, fire, flood, or natural disaster. Your healthcare providers should have copies of your Advance Directive, along with your healthcare surrogate or proxy.
Recommendations to ensure that your Advance Directive is available when needed:
- Upload to a registry
- Have several copies available
- Give copies to your surrogate, trusted friends, hospital, and medical providers
- Upload to your phone, and those of trusted individuals who will advocate on your behalf
Do not have a false level of security or leave to chance the need for a strong healthcare surrogate or proxy who is informed about your wishes. This individual must have an updated copy of your Advance Directive, be willing, able, and available to advocate on your behalf. For your peace of mind, do not leave anything to chance.
References & Resources
Association of Physician Orders for Life-Sustaining Treatment With ICU Admission Among Patients Hospitalized Near the End of Life. Robert Y. Lee, MD, MS1,2; Lyndia C. Brumback, PhD1,3; Seelwan Sathitratanacheewin, MD1,4; et alWilliam B. Lober, MD, MS1,5,6; Matthew E. Modes, MD, MPP1,2; Ylinne T. Lynch, MD2; Corey I. Ambrose, BSc7; James Sibley, BS1,5,6; Kelly C. Vranas, MD8,9; Donald R. Sullivan, MD, MA, MCR8,9; Ruth A. Engelberg, PhD1,2; J. Randall Curtis, MD, MPH1,2,5,10; Erin K. Kross, MD1,2. JAMA. Published online February 16, 2020. doi:10.1001/jama.2019.22523
Advance Care Planning: Healthcare Directives from the NIH
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