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Recently, during a community presentation in San Diego, I had gentlemen raise his hand and state, “My mother was declining due to her lung cancer and I suggested hospice with her physician a month prior to her death. I am grateful that my mother received the hospice care she needed, but shouldn’t her doctor have suggested hospice to us rather than the other way around?”
His question released an avalanche of stories from others in the audience – all expressing similar experiences.
Another woman spoke with remorse, “My husband died a few years ago. Sometimes I wonder if there was more that could have been done.”
These stories remind us that a healthcare advocate is a critical component of the healthcare team. Since a family caregiver is generally a person on the “inside,” they are in a better position to know the needs and wishes of the loved one they are caring for. As a family caregiver, you are in a great position to be a healthcare advocate. While a family caregiver may not have a medical or healthcare background, his or her day-to-day experiences with a loved one can provide critical information. Your healthcare professional may rely on this information in order to make the best medical decisions.
Keep in mind that being a healthcare advocate is not an adversarial position. It doesn’t necessarily mean rushing out and getting a second opinion on every matter and then confronting your healthcare professional with your findings. It means you are a team player on the healthcare team.
Some people don’t think of themselves as healthcare advocates because they are not loud and pushy, or feel that they don’t know enough about a specific medical condition. But in fact, the best advocates are quiet forces who support mostly by their steadfast presence and perhaps asking the questions that their loved one/patient cannot ask for themselves. Being a healthcare advocate for your loved one can be one of the best and lasting gifts that you can give them.
Sherry Taylor-Englund has worked in the field of hospice since 2000. She began her career as a licensed vocational nurse in 1988 and currently conducts speaking engagements on end-of-life care topics.