Tonight the hospice and palliative care online community will be dedicating their weekly #hpm Tweetchat to discussing advance care planning with the #HaveTheTalk hashtag as a way to support the NHDD initiative.
For people not on Twitter, we’ll start by explaining a hashtag which basically is a way on Twitter to organize Tweets (short messages on Twitter) around a topic. Placing the # symbol in front of a word
"'Would you like to discuss your end-of-life plans today?' I ask my patients this question, though not as often as I'd like. Talking about death may be uncomfortable, but it's a conversation that needs to happen more often." --Kevin Pho, MD.
Dr. Kevin Pho's assertion is one that may have been cause for pause for patients and families years ago. However, as people continue to become educated on the value of advance care planning through initiatives like National Healthcare Decisions Day (NHDD), it is a sentiment that is garnering the thought and consideration it deserves amongst medical professionals, patients and families.
Rallying to Encourage and Empower Us All to Make Our Healthcare Decisions Now for the Unknown Later…
College education. Career path. Relationships. Starting a family.
Buying or selling a house. Vacations. Retirement. From the age that we’re old enough to understand, most of us are taught and accept that these are the markers in life that we plan for. However, there’s one key marker that’s all-too-often missing from this list: healthcare decision-making. Like planning for these other life events, planning for the time (or times) that we are unable to express our healthcare wishes is of the utmost importance. It is something that should be well thought out, documented and revisited at different points in life to reflect any change in our desires or family situation or the person we wish to advocate for us. Unfortunately, it is a planning point that that majority of us have missed. As a consequence patients’ families suffer the added burden of having to guess when a health crisis happens. That’s why Nathan Kottkamp founded National Healthcare Decisions Day (NHDD) back in 2008 and why this nationwide advance care planning awareness initiative is as important as ever. So this year, I’ve joined my fellow bloggers throughout the country to spread the word about the importance of advance care planning with this special NHDD edition blog.
So here’s my story:
I clicked the link to fill out my very own advanced care directive. What an odd feeling to be the ‘patient’ filling out this form. It’s a subject I’d broached with my family time and time again (and, they were having no part of it), something that I’ve publicly advocated for over a year and that I’d publicly and privately chastised others for either not doing or not being interested in doing. And now, here I was, finally making an honest advocate of myself. As I read the instructions, all I could think to myself was ‘who can I possibly trust to respect and voice my wishes? ’ I’m closest to my twin sister and my mom, but not only do they not even trust me to pick out my own wardrobe, I can’t even bait them into a conversation about advanced care directives. Oye Vay! So I read it again! After more careful thought, I decided that my mom might let emotion cloud her judgment and my advanced care directive may turn up missing. But Melissa – my twin sister – on the other hand, she’s a straight shooter. She might not like or agree with my choices, but she’d speak up because it’s the right thing to do.
Then, I got down to business, filling out the form! Luckily, this part was easy…what I had done for the past 16 months, is deliberate and clearly determine what I would or would not want done in terms of life sustaining treatments in various scenarios of terminal illness. Do attempt curative care in the initial stages of illness (if you haven’t already tried and failed) if physicians are hopeful of recovery or the odds seem like they are in my favor. DO NOT seek life sustaining care if it’s apparent that I’m dying and nothing is going to stop that process; let me live comfortably in my home surrounded by my stuff with hospice taking on the burden of care and giving aid to family caretakers. The details of which I clearly stated in the five lines allotted. And, it was a good feeling. In fact, ‘good’ may be an understatement, a wave of relief washed over me! My next thought was my next step: convince my family to have the same piece of mind I experienced when my advance directive was complete. So I guess my story is to be continued...
You may –or may not—have been able to relate to my advance care directive story. However, many of the people I’ve shared it with in hopes of sparking ‘the conversation,’ have. We want the NHDD initiative to inspire people from all walks of life to be moved to plan their healthcare decisions and so we need people from all walks of life to share their stories.
So, now I ask: after reading mine, won’t you share your story?