Hospice is not a diagnosis; it is a plan of care for the diagnosis

What is hospice? I get asked this question a lot. I have also heard the many misconceptions about what hospice is, and I have seen fear, a lot of fear. To many people, hospice is a death sentence and it is dark and scary and means there is no turning back… you are going to die. And this is true, because when given the hospice order, it means you have received a terminal diagnosis with the assumption you have 6 months or less to live. Could that change? Yes. I have seen people thrive and come off of hospice, but it doesn’t happen often.

Hospice is not a diagnosis, hospice is a plan of care for the diagnosis. It is the collaboration of a team that works together to find a way to support the patient and the family during what will be the hardest time of their life.

When I start seeing a patient, they are already on hospice; they are already aware of their diagnosis, their prognosis, and the inevitable way things will turn out. I wish so badly that I could change the outcome, and I think all of us working in this field feel the same way. But we can’t, and we are realistic about that. What we can do, however, is make sure that you always feel supported, that you are relieved of pain and distress, and that you are provided the supplies, the medications, the education, and the resources that you and your loved ones need.

Most of you have heard the names Frank Ostaseski, BJ Miller, Jessica Zitter, Barbara Karnes, Katy Butler, and my personal favorite, my friend and mentor Gary Pasternak. These are all people I have listened to, read their books and followed as they shared their lessons about the end of life. There are so many more I could name and all of them have found a way to raise the dark cloud off "hospice" just enough for me to realize that death, while painful, scary and terrifying, can also be a beautiful experience. I know that doesn’t happen often, I am not trying to romanticize death and dying, I am simply saying that if properly cared for at the end of life, and symptoms are reduced, death can be peaceful, which is a beautiful thing.

They are the ones who have taught me about what bedside manner truly means, how compassion plays such a key role at the end of life and how as humans we need to practice more kindness and learn the true meaning of being present. These people are not angels, they are human beings who give completely to other human beings going through a difficult experience. I respect and admire them and I am grateful to them for showing me the way.

I certainly can’t speak for anyone else that works in this field, but for myself I can say that there is no end to what I can learn and how I can grow and how excited that makes me feel. I want to learn more, I want to continue to grow and to be able to not only provide a kinder experience for the patient’s and their families, but to also share what I am given to others just starting out in this field. We are a community of people who give our hearts freely and without need for anything in return, except perhaps the knowledge that we might have made a difference in a difficult experience and truly provided the soft landing every human being deserves to have.

We are all going to die, and there is no rhyme or reason how one is chosen over another or how short or long our time will be. But the one thing we can choose is how we are treated and cared for when that time comes. I can assure you that if you are given a terminal diagnosis and you go on hospice, there will be a team that will work collaboratively to ensure the care you and your loved ones receive is compassionate and kind.

If I can give you any advice relative to hospice, it is the reminder that hospice is not the boss of you! Speak up, ask questions, and let the hospice team know if you are not being given the information or support that you need. Let them know if you need more detailed explanations of medication’s or care. Be the voice they hear loudest so that they truly can honor you in the way that you deserve.

xo

Gabby

Photo: I took this photo at the Bernardo Winery in San Diego, artist is unknown. It is a beautiful wood sculpture that I was very drawn towards. I have tried to find the artist but have not been successful.