It can be difficult to talk to a client or the family about hospice. I say that because as a patient advocate, my job is about providing information. When one of the options needed to be discussed is hospice, it can be very emotionally charged. I have found that I often approach the topic before the medical staff is willing to admit the end is near.
I have much respect for hospitalist. They have a difficult job and most are receptive to the patient advocate role. That is if I can get them on the phone then I have been able to get a realistic medical picture of clients. I find I can ask the question about hospice.
There has been a renewed discussion about talking to patients about hospice since Medicare now pays for “end of life options”. The discussion had been shut down by the death panel misinformation during the healthcare reform debate.
As a patient advocate, I am constantly gathering information. A typical scenario for me is, I receive a call to assist a family/client in the hospital with finding medical treatment options and coordinating care. My job is to provide information and options available , to stay fully current of all the person’s medical changes, get timely updates from the medical staff and facilitate action when required.
An advocate is not involved in the family/client medical treatment option decision. It can be difficult to resist the temptation to infuse your personal choice on a treatment.
The time may come when I know the treatments are no longer working. I know it is time to introduce the idea of palliative care and hospice. I believe hospice provides dignity and grace to the dying process. It allows the family/client to have more control of the final days/months. I have to say, I don’t find the conversation easy because no one wants a loved one to die. And so I offer it as another option to care. I will suggest speaking with a hospice representative in order to have an understanding of what it means. Information is always the key to understanding.
Sometimes the greatest barrier to starting hospice is the medical staff especially in the hospital. Medical professionals are trained to do everything possible to keep someone alive. I can only imagine how difficult it is to not be able to save someone. Does a hospice discussion equal failure?
An essential part of being an advocate is providing support. When families need to make these decisions, I make myself easily available to answer questions and concerns. I know how difficult the process can be and am always honored and moved to watch it unfold.