HIV/AIDS and hospice

December 1st was World AIDS day, so I thought this was a good time to say a bit about how the hospice community in general is doing at caring for AIDS patients. The little I have to say? We’re not doing very well. I’ll tell you why.

First, most AIDS patients are not referred to hospice because it (somewhat like Alzheimer’s) is almost impossible to predict when a patient with AIDS is going to die. You can take two people from almost any given phase of the illness and one could easily live years longer than the other. Since doctors must certify that they believe a patient generally has six months or less to live, it is hard for a doctor to, in good conscience, make a hospice referral. Given this fact, few AIDS patients are referred to hospice, and most of those are very close to death.

Second, and probably more importantly, is the fact that most hospices, from a business standpoint, don’t want AIDS patients. We are paid the same amount of money no matter what the diagnosis of the patient is. We are paid the same no matter how much care the patient needs. We are (and this is the one that most applies to AIDS patients) paid the same no matter how many medications we buy for the patient. If the medication, medical equipment, treatment, or care that a patient receives is related to his/her terminal illness, then hospice pays the bill. AIDS patients are a loosing game for the business office of any hospice. They are almost always going to require many medications and more staff time than the average patient, so hospices don’t try to get AIDS patients. Please understand that I’m not saying that hospices will not accept AIDS patient. I’m sure there are some that have an unofficial policy to avoid at all costs admitting an AIDS patient, but I hope and believe that those agencies are the exception not the rule. The key is that hospice does not try to get into the AIDS community. The large hospice companies spend a lot of money marketing doctors and nursing homes, but I can almost guarantee that those marketers do not stop by facilities that specialize in AIDS patients. If there was a facility that only cared for COPD patients you’d have to beat the hospice marketers away with a stick! There are facilities like that for AIDS patients, and they have probably never seen a hospice marketer. The bottom line is that AIDS patients are not a good business decision for hospice agencies.

I’m sure there are some shining examples of hospices that do a lot of AIDS work. (In fact, I’d love for you to tell me about them and I’ll highlight them in a later post.) Yes, I have no doubt that there are examples of companies who have thrown caution to the wind, but these are not the norm. I’d also like to add the one other reason that I believe hospice is not used, and it’s one that I’ve noticed from personal experiences in caring for AIDS patients. The AIDS community is a tight knit group. They take care of their own, and don’t need/want/expect a lot of outside help. I’m not going to go into the reasons this is true, but I do believe this is a reason that AIDS patients don’t seek hospice care.

I have no solutions for this problem. I only write today to inform. If I knew what we should do about this I’d tell you. I don’t.