This is the first in a multi part series on how to choose a hospice. The later posts will go into detail about what you need to know and how to find out, but before I get into all of that I wanted to talk about why it matters.
If you pump truth serum into most hospice workers they will tell you that there isn’t much difference between their company and the others, and in reality there isn’t. We all work under the rules of the Medicare Hospice Benefit. Medicare tells us what staff we must have, what we must pay for, who does and does not qualify for hospice, how often we can or can’t do certain things, who we contract with to provide certain services, and even who we can’t contract with. The Medicare Hospice Benefit rules hospice in the United States today. With that fact in mind, I’m going to tell you what I would want to know before choosing a hospice for a loved one.
I’m sure you are wondering why I’m writing multiple posts about how to pick a hospice if I start post number one by saying that most hospices are the same. The answer is simply: “Because the devil is in the details”. If you call three different hospices and ask general questions about what they do and don’t provide for their patients, you will hear almost the exact same thing three times. Does that mean that it doesn’t matter which one you choose? NO! There are not many differences between hospice programs, but those little details that you don’t even know to ask about could become a big deal for your loved one.
In all honesty, I believe that most hospices do a good job of taking care of the average patient. The differences come when dealing with the rare patient or rare situations. You never know which patient is going to be average and which will present something rare. I’ve seen quite a few hospice patients, and would not ever attempt to guess at which one is going to surprise me tomorrow. This whole set of posts is written just in case your loved one ends up having something happen that puts them in the rare category. If they do, you better hope you are with the right hospice.
The following posts will give you tips on what to find out about a hospice before signing up. Tip number one is that you need to find these things out before you sign up. Every time a hospice gets a phone call about a possible patient, things shift into hyper drive. Every hospice has protocol for exactly how that phone call is handled, and the person you end up talking to has almost always had some special training on how to handle these phone calls. At that moment, the person on the other end of the phone becomes a hospice salesperson. They want to take care of your loved one and will do what they can to get you to choose their hospice. To put this into perspective, in 2004, 44% of the hospices in America admitted less than 150 patients. That is less than three new patients per week. 16.4% had less than 50 Admissions, so if you are calling one of those agencies, odds are, you are the only possible admission they will have that week! It doesn’t matter how good an agency is, if they don’t have any patients to care for, they will not survive, so this phone call is very important to them.
As I stated earlier, hospices generally offer the same services. They are staffed and prepared to provide a certain amount of care to each patient. The person you are talking to on the phone knows exactly how far they can push that envelope to offer things that are above and beyond the norm. If you ask them for something that is beyond the company norm during that initial phone conversation, they might say yes. If you ask for that a month after you sign up, it will be much easier to tell you that hospice doesn’t usually do that kind of thing. Once you have signed on and built relationships with the hospice staff, the hospice will assume that you are not going to leave for another hospice over something minor. If you ask for it before choosing a hospice, they know it could be a make or break detail. If you are going to sign yourself or a loved one up for hospice, make sure you ask your questions and get your promises up front. That first phone call is important, and most of the rest of this series is going to deal with things said during that one five minute call.
I have received criticism in the past because the above paragraph sounds cold and calculating. It makes it seem like hospice is “being sold like a used car”. While I understand that criticism and know that the paragraph doesn’t set well with many in the hospice world, I also know it is true. Don’t get me wrong here, I am not saying that good hospices will withhold standard care for patients if they require more care as their illness progresses. I’m talking about special requests that push the boundaries of what a hospice is supposed to be doing for their patient. Every hospice administrator knows what I’m talking about here. Patients request things beyond the scope of normal hospice practice all the time, and hospices make a practice of providing things beyond the scope of normal hospice practice on a regular basis. The Medicare Hospice Benefit leaves many things in a gray area where nobody knows for sure what is hospice’s responsibility and what is not. Every hospice has drawn their own line in the sand on what they believe they should or should not be responsible for providing to a patient. Here’s an example I ran into recently. A bedbound patient’s wife needed to leave town for three days and had arranged for the patient’s elderly mother to stay in the home with the patient for those three days. The problem was that the patient was incontinent and his mother couldn’t change him. We were asked if we would send an aide to the home to change him when needed (day or night) for that three day period. That type of 24 hour aide service isn’t standard practice for a hospice patient. (The hospice is not the primary caregiver for its patients.) Could we do it for three days? Yes. Should we? There is no national consensus on that! My argument here is that if your request falls into this type of gray area, having a patient admission hanging in the balance may tip the scales toward the hospice agreeing to push the limits. Every hospice draws the line somewhere, but the odds of getting something in the gray zone approved is better at the time of admission than it is after the admission is complete. It’s not selling used cars, it is just the reality that hospice, like any other business, must manage its scarce resources and can only push the envelope so far before going broke.
The next post in the series will start covering what you need to find out during that initial phone call.