@colleenyoung, I apologize- have been off-line a bit; had an unexpected hospitalization of a family member. thank you for your question. Believe I was motivated by both, but no single experience. I come from a large multigenerational family; predominantly on my mother's side- my Latino side which is what I most closely relate with in my faith, family, culture, cooking & music; I remember loss as far back as my memory will take me, not always part of those tough conversations (younger years) and when an adult and chose nursing- became the one everyone called. In my extended family having these conversations has and continues to be a work in progress to date. With my immediate family members, it’s a conversation that gets revisited whenever we have a family member/friend going through a difficult time with illness/loss or may have been a story in the news or a movie/program of an individual or family battling to exercise their right to choose. I take those opportunities to share & update my wishes verbally, so far only having to update my document once. One thing that hasn’t changed is that I want a celebration of life; a gathering of as many as can come (or zoom or face time!), with great food and music😊… and a little tequila wouldn’t hurt (my favorite).

As a nurse, I have experienced patient loss over the years and felt the pain of those near and dear to them. What saddens my heart most is a family brought together for an ill family member who are unable to start the difficult conversation with the patient or amongst themselves (in the case where a patient is unable to participate in the conversation-“the elephant in the room”) -or- seeing family members at the bedside or just outside the patient room arguing over next steps. Our goal as nurses and those of your care team is to help the patient & family through this difficult time. It is a time when all should come together, hold each other close and take next steps in the direction all can agree was the one the patient would have wanted if able to express it for themselves. It saddens me & the care team to see family members exchange words that are difficult to take back -or- the experience create a wedge between them-something we are pretty sure that the patient would not have wanted.

In summary, it is my passion to help change the culture/belief- that this conversation is too scary, too early or too busy to start now. The reality is that we will all eventually need to have it and how awesome (one of my favorite words) would it be if we were left a “recipe book” from our loved one that reinforces those conversations had and contained wishes, wants and not wants. I also hope to change the thinking that conversations and documents are not just for end-of-life; while it is a primary goal, anyone at any time in their life, can have an unexpected life altering event that may leave you without the ability to express your own wishes…How awesome to have something in place for the just in case.

I have enjoyed conversing with everyone and hopeful we can continue- lots of work to be done; asking you to share and encourage others to jump in!