While on a flight out to a branch in another city to train new hospice nurses, I logged into a hospice support group on Facebook to explore what people post. I was gobsmacked to say the least. There was post after post by hospice patients describing symptoms out of control, family members talking about experiences they were having with loved ones they were caring for and questions upon questions. So many people were asking “what should I do, how can this or that symptom be better controlled, is this or that normal, how do I cope, can we get support for A or B.” I read about caregivers crying all night and patients vomiting all weekend. I scrolled over story after story detailing trials of this medication or that medication. And worst of all, I saw caregiver after caregiving asking for information about hospice or asking if it was time for hospice.
I could only think one thought……”WHY ARE THEY ASKING ABOUT THIS ON FACEBOOK?”
Facebook has produced a wonderful connection for caregivers and patients to reach out and share feelings and experiences. It’s very easy to become isolated in the terminal prognosis experience and feel alone and unique in the weight of the responsibilities and the emotions. It was easy to see that many people were able to find support and strength in the shared dialogue of the end of life diary that Facebook allowed complete strangers to write together.
But Facebook cannot replace the work that can and should be done by the RN or Hospice who is or can be directly involved with the patient under care or seeking information about care from the hospice team. I read so many responses to patient queries that answered questions with NO prior knowledge of the patient history which is bold at best and dangerous at worst. I read responses that lacked empathy and many that lacked science. And all the time I asked OUT LOUD, “Why is the caregiver/patient going to Facebook for answers?” And then it came to me…..this patient/caregiver isn’t receiving quality hospice care. So this is my first message in this blog…….
IF YOU FIND YOU NEED TO TURN TO FACEBOOK for answers about your medications or suggestions on how to better control symptoms or how or help your loved one, GET A NEW HOSPICE NURSE at least, if not a NEW HOSPICE COMPANY. Your needs are not being met, they are not being anticipated, you are not being educated properly, you are not being supported and you deserve better whether you are the patient, the caregiver or the family member. You need to call your hospice and ask them to answer these questions and manage these symptoms and intervene on these issues. This is what they are supposed to do. If you are not asking them, then you should, instead of asking total strangers on the internet for direction. The hospice team is the best equipped to meet the needs and they know the whole story of the patient, caregiver and team. If they have not done a good job, get another hospice.
NOW, for those asking FACEBOOK if it is time for hospice……if you are not able to have this conversation with the primary MD for the patient or the principle specialist….. call a few hospices and talk with them. HOSPICE is the expert on when a patient is appropriate and can tell you what qualifies a patient and when it can come into the picture and be more help than other types of healthcare. How will you know this if you don’t ask the experts? So many people out there in FACEBOOK land have incorrect information about hospice and they give out that incorrect information pretty freely! And guess what, in my career, I have seen many many physicians who don’t understand hospice either. Go to the source to get information, put tools in your tool box. It’s just a conversation. And, if you are thinking about it and don’t feel you can discuss it with your treating doctor, what kind of messed up relationship is that? This physician has a life in the balance and you can’t ask about hospice but you will ask strangers on FACEBOOK?
I’m not dishing on Facebook, not at all. But I feel unbelievable panic, almost a responsibility to try to respond personally to every post on every hospice support group blog, which I cannot possibly do. So this is my next best response. There is a much better way to get correct answers, effective symptom management, therapeutic support, empowering education, empathetic compassion and high quality hospice care… it’s just not on FACEBOOK.