advance directives can be a gift to san diego caregivers
In life, it helps to prepare for the worst and hope for the best. This includes healthcare decisions made with the help of advance directives. Culturally, talking about wills or end-of-life issues is somewhat taboo in my family. I am the youngest of six children and caring for elderly parents. So, whenever the subject of wills or advance directives for my parents came up, my siblings either ignored me or just said “I don’t want to talk about it.”
I don’t blame them. Having discussions about what we would do in the event our parents die is a difficult subject to broach for a lot of people. Even talking about it with my parents was hard for me and them as well. Facing your mortality is a pretty intense reality-check.
As I became more involved with my parents’ medical needs (taking them to doctors’ appointments, checking on their medications, etc.), it became an opportune time to discuss advance directives. Eventually, I worked with them in filling out the form and answering the tough questions that needed to be answered such as whether to provide, withhold or withdraw treatment, or whether to donate or not donate organs, tissue, etc.
Ultimately, we made sure their healthcare wishes were met in the event they could not speak for themselves, so that their healthcare providers and our entire family would know what to do in the event of the unthinkable.
It was bittersweet when we had to turn to those advance directives when my mom became ill and unconscious. As we all struggled with our own emotions and tried to come to grips of “why” this was happening, we didn’t have to struggle with what my mom would want – it was there in black and white for all of us to see. In a way, it was my mom’s gift to us…the gift of “peace of mind” in knowing that we were doing what she wished for.
We started the discussion about Advance Directives in the early phase of a family member’s illness. We paid attention to revising the document as new information came forth about prognosis and treatment options. Revised versions of the Advance Directive were distributed to appointed representatives, family members, the Medical care team, and left in plain sight in the patient’s home for EMS. Note of caution: although the revised version of the advance directive was given to the nurse upon a hospital admission, the revised requests were not transcribed into the electronic patient record at the facility where the patient underwent risky medical care. This meant that the patient had been hospitalized in ICU as “full code,” instead of “DNR.” This error was not identified until the patient transferred out of the hospital, to a rehab facility, and the transfer documentation describing the patient as “full code” was reviewed with the patient. This error not only left the patient at risk of receiving unwanted treatment, but caused the patient distress, confusion, and loss of confidence in the system at a vulnerable time. Now, upon every MD visit, we verify the code status in the electronic record.
Regarding Kelley’s comment: Your experience makes an excellent point. As patients and caregivers, we all must be vigilant about our healthcare records/requests, etc. to make sure they are accurate and up-to-date. I know this can be difficult because, like Kelley’s situation, we usually don’t think about these things until they come into play when a critical medical issue is being addressed.
Kelley, thanks for sharing your experience with our readers.
-MD