Here's some great... and helpful... information from VNA Hospice Care. It's geared toward providers, but anyone considering hospice care for a friend or family member can benefit from the information here:
Understand that every discussion surrounding end of life care will be different. Each patient and family will have differing personal, cultural and spiritual concepts and experiences with death and dying. These will be brought to the forefront as you begin your discussion. There is no "one way" to have this conversation.
Don't expect the patient's physician to have done all the "heavy lifting" for you. Recent surveys, done both here and abroad, of physicians likely to provide care for someone who is dying reveal that only about 1/3 of them ever have open, honest and frank discussions with their patients about the fact that they are dying. A full 2/3 of these physicians have expressed discomfort with such conversations as well as a real willingness and need to learn how to do them better.
Before beginning any conversation review your own experiences with death and dying first. Examining your own thoughts, emotions and beliefs about death and dying will give you a focal point to work from and better prepare you for the questions, concerns and fears the patient and family may want to discuss. By understanding and being comfortable with the choices you would make, it will better help you to accept those they may choose to make for themselves.
Pick a time and place when the discussion can be done in a calm and unhurried manner. If your visit is a particularly task oriented one and procedures are your primary focus it may be better to set aside the discussion until you can visit again and have more time to talk and especially, listen. Any time a patient or caregiver brings up the topic first is the time to have the discussion. If you are the one initiating the conversation, include it into your plan of care as a priority as you anticipate the patient's condition declining. It is best not to have the conversation when there is a medical crisis already in play or the family is in turmoil over other issues.
Know about the patient's disease process and its likely progression. As importantly, explore with the patient and family what their understanding of it is. Are their goals of the care you can continue to provide realistic and consistent with what their condition now warrants? Are they in denial or do they understand the severity of the disease and are just having great difficulty in expressing their fears about it? If key words like "hospice" are likely to be problematic as you "break the ice", suggest rather that they may be interested in learning about another "level of care" from a colleague and friend you work with.
Know a bit about what hospice care can offer in the way of services. You do not have to be an expert in hospice care. Simply getting them to allow you to have hospice come in to provide a consultation for informational purposes will be enough. If you can, try to schedule that consultation for a time when you can be present in the home. You know your patient and family better than we do. Your presence during our first visit may greatly relieve any family anxiety over the consultation and will serve to educate all of us to better collaborate in the future.
Remember that help with initiating these discussions is always available to you 24/7.
Just give us a call and we can talk about what the issues are.
Question of the Month:
What is the single most common expression made by patients who are most likely ready to discuss hospice and palliative care?
"I don't want to go to the hospital any more."
Hospital stays are no vacation. If they were, you could schedule a trip to them via your travel agent and skip the ambulance ride. We all have said this and no one ever wants to be re-hospitalized but when someone with a chronic, increasingly more debilitating illness says this, the question then becomes, is anyone really listening?
"I'm ready to refer a client for hospice services"
Call ext. 2888 or 781-569-2888 and ask to speak with our Referral Center
"I'm not sure; I need more information and help first"
Call the "Bridge to Hospice Hot-Line" ext. 6888 or 617-886-6888
And request a callback conversation