Tara Graham: When the unexpected happens, what’s your plan?

Editor’s note: This commentary is by Tara Graham, MSW, LICSW, LNHA, who is executive director of the Hospice and Palliative Care Program of the VNA of Chittenden and Grand Isle Counties, Vermont’s oldest and largest non-profit home health and hospice agency.

It’s National Healthcare Decisions Week. Who’s Your Person? What’s Your Plan?

It’s a simple yet vitally important question all Vermonters over 18 should be able to answer. If you are unable to speak for yourself due to incapacitating illness or injury, who will speak for you? Who will ensure the treatment you receive – or decline – reflects your beliefs and preferences?

In my work as Executive Director of the Hospice and Palliative Care Program at the VNA of Chittenden and Grand Isle Counties, I engage with individuals and families facing life-limiting illness every day. Conversations about wishes, values and preferences at the end of life are a necessary part of the hospice philosophy of care. These conversations can be at once routine and profound. The process of dying is a daily part of my life and I realize that this is not true for most people – it isn’t even consistent among those closest to me personally.

For many, talking about debilitating illness or injury and death is completely foreign and something to be avoided. It’s uncomfortable, some may even say a little morbid. But here’s the thing: I believe it is a person’s innate right to choose the direction of their lives until the moment he or she dies, regardless of their ability to communicate their needs. We all hope to never have a serious car accident, but we purchase car insurance so we are prepared should the unexpected happen. Advance care planning – making your healthcare wishes known – is like an insurance policy against unwanted medical treatment and interventions during times of tremendous stress and uncertainty.

Despite recent gains in public awareness of the need for advance care planning, studies indicate the majority of Vermonters, and in fact most Americans, have not exercised their right to make decisions about their healthcare in the event they cannot speak for themselves. By normalizing conversations around advance care planning, and making our wishes known to loved ones and our healthcare providers, we can all be better prepared to deal with the unexpected.

I have had the privilege of hearing about people’s fears throughout my career as a social worker. Over and over again, the theme of losing capacity or loss of control is consistently at the top. Even my dad, when faced with a terminal diagnosis of glioblastoma, who knew intuitively when he no longer wanted to pursue curative treatment, so he could focus instead on quality of life for his remaining days, found himself having to explain his decision to family and friends. My dad was able to make his wishes known. Thankfully, he also had an advance directive in place in the event he became unable to speak for himself and my mother and sisters needed to make healthcare decisions for him. He gave us the gift of certainty.

Imagine if we could chart a path, lay out scenarios and share with those that love us about how to represent us at a time when we might not be able to represent ourselves? This is a very real, obtainable possibility.

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