It’s Christmas eve and I’ve just been catching up on some back reading, including our local weekly papers, The Hook and Cville Weekly. In the latter publication, there was a reference to an article in the November 27 issue regarding hospice. I noted in the Letter to the Editor that only Hospice of the Piedmont was mentioned. The article, Long journey home: A family’s experience with hospice care, is quite lengthy. And it is perhaps one of the best articles I’ve ever read on Hospice care. *
There is no doubt that hospice does wonderful work. What concerned me about the article was that they limited themselves to people having experience with only a single hospice agency – Piedmont. They interviewed workers from Piedmont, doctors from Piedmont and families served by Piedmont. One begins to wonder if this were a paid advertisement or editorial content!
In fact there are several hospice agencies in this area that patients and their families might choose from. In addition to Piedmont, Legacy Hospice is a dedicated hospicae agency. In the Waynesboro/Staunton area, Augusta Medical offers hospice service. Also, most home health agencies, Asera, Interim, Medi-home health and others all offer hospice care. Some nursing facilities have their own hospice care units.
My beef is not with Piedmont. Not at all. My problem is that the article perpetrates a a different problem. That is, that many patients and families do not realize that they have choices regarding care providers. More importantly, they have the RIGHT to be informed of the choices available. So for example, if you are a patient at Augusta Medical Center, and you are preparing to be discharged home and need home health care, AMC is required to advise you that you have choices among several home health agencies – which may include AMC’s own home health care (or hospice) agency but AMC may not limit a patients’ choices by failing to inform them of the available providers. Typically, hospitals simply provide a bewilderingly long printed list of healthcare providers. Either overtly or covertly, discharge planners and social workers are instructed to direct patients to a particular agency – usually one affiliated with the same hospital or its corporate entity.
This is wrong.
Patients have the right to make choices in their care planning. There are costs to think of and social issues that may impact one’s choices. For example, lets say you live in Stuart’s Draft (“over the mountain”) and your father has been transported to UVa. Medical Center after a serious stroke. After the initial crisis is over, UVa begins to make plans to discharge your father to a rehab center since he has lost the ability to walk and his speech and ability to swallow are severely impaired from the stroke. The discharge planner tells you that the first available bed is at Trinity Mission in Charlottesville. Very likely, you are unfamiliar with Trinity Mission and don’t even know where it is. But you expect the discharge planner – who seems very nice and caring – to take care of things for you. No doubt they have the best of intentions. However, Trinity Mission is a nursing home north of Charlottesville and not easily accessible to you, since you will have to drive 40 minutes each way or more to see your father.
There are plenty of nursing and rehab facilities in the Waynesboro/Staunton area that would be closer and far more accessible to you. Placement in one of those facilities means you could drive yourself and your mother to see dad on a daily basis and you could both help encourage him to do his therapy, eat, talk, visit, walk and just generally spend time with him to keep his spirits up. However, if you don’t know that you have choices in your care providers, you will simply assume that the UVa discharge planner “knows best” and simply acquiesce.
Soon, your father is in a nursing home that you, your mother, friends and other family cannot easily get to; father is alone most of the time; gets dispirited, lonely and depressed; he begins to refuse food, only reluctantly participates in any activities including physical, occupational and speech therapy. After a time, father has deteriorated to the point where he is unlikely to ever come home since he requires 24/7 care.
The story doesn’t have to end that way. You have choices. You can insist that the discharge planner find a bed in a facility closer to home. You, your mother, church members, co-workers and others can visit your dad regularly. His spirits are buoyed by the interaction, encouragement and good wishes he receives. He works hard to go home and ultimately regains much of the ability he lost due to the stroke so that he can go home even if it means having some additional care in the home.
Again, you have choices. The hospitals and healthcare providers are required to tell you what they are. But you should also ask. Don’t rely on others to help you make informed choices.
*In the interest of full disclosure, I have to disclose that my partner is a Nurse-Case-Manager for another hospice agency here in town (not Piedmont). She has no ownership or profit interest however, she is a salaried employee.