What is the purpose of hospice?

Whether or not to be on hospice can be an incredibly emotional, gut wrenching, contentious decision. This is something I'll discuss with patients on a weekly basis whether in my office, nursing home, or hospital. In surveys of some populations, the vast majority of people with a hypothetical terminal illness would want palliative (or comfort) oriented care but in the same survey would reject hospice services which aims to provide that type of care. Why? Somehow, hospice services are seen as something negative. People fear that hospice means that everyone has given up, they will be left to die alone, they are being told they have less than 6 months to live, that they are being abandoned.

Having been a hospice director (but no longer at my current job) and working with dozens of hospice agencies (both for profit and not for profit), I know there is a lot of confusion as to what hospice is supposed to be.

There are several types of patients that sign on to hospice and you will note very different goals.
1. The patient who is actively dying. This patient has less than a week to live. Has already started the dying process of multi-organ failure, low blood pressure, low heart rate, coma, kidney failure, cessation of eating/drinking etc. Hospice is used to help make the dying process comfortable. Possibly at home.
2. The patient who is sick and tired of doctors/therapeutic interventions such as ICU's, intubation, ER visits and wants to be left alone. This patient wants to have quality of life maximized without invasive procedures.
3. The patient who has a very short life expectancy (i.e. < 6 months) who still wants to live as long as possible but has some patient preferred limits (i.e. no intubation) and/or doctor limits (chemotherapy/dialysis is no longer effective as an option). The difference between the last two is that the last patient may still want options that the doctors are no longer offering. The limits on care options are due to the severity of the illness, not the patient's preferences. One contentious issue is ED visits/hospitalizations/Codes. Some patients may still want this even when it is ineffective. One very real example is that a true code in nursing home (where the patient is found without a pulse and not breathing) is 100% fatal situation. Yet it is not uncommon to find half of nursing home patients as full code. Hospice is an easy answer to patients #1 and #2, but can be very upsetting to those who are patient #3. Patients in the last category feel that options are being taken away that they still want (everything from blood draws to xrays, to ER visits, ICU care etc). Ideally, hospice could be flexible for patients in this last category, continuing to provide patient centered education while allowing the patient the dignity of directing their own care. However I find this is often not the case and why hospice has such a bad name. Often hospice nurses, in the name of improving quality of life, will dictate goals of care TO the patient, set limits on what options are considered available regardless of patient wishes and fail to let patients direct their own care. As the proportion of patients being referred to hospice reflects an increasing diversity of goals, this type of management will fail and offend many. (i.e. Palin's death panels). Hospice agencies used to dealing with patient #1 and #2 will need to increase flexibility to help those in category #3. So far many haven't. In this case, ideally the primary care physician will be able to medicate mediate between hospice and the patient, advocating for the patient and ensuring the patient gets the care that they want.