hospice in assisted living facility

Monday, April 09, 2007

Hospice in an Assisted Living Facility

Assisted Living Facilities have been showing up on every corner over the past few years. They are a great alternative for people who can’t keep up their own house but don’t need to be in a nursing home. Most are very nice and allow their residents much more freedom and privacy than nursing homes. Hospice sees patients in both facilities.

If you have read this blog much at all, you know that the relationship between hospices and nursing homes is, shall we say, strained. This is not true in Assisted Living Facilities, but that doesn’t mean there isn’t a problem.

If you have been approached by your Assisted Living Facility about hospice care, the discussion probably included the phrase, “hospice can help you stay here longer.” Which is often a thinly veiled threat that, if you don’t accept this help, you will be forced to move to a nursing home. I’m not here to talk about the ethics of that threat. I assume we are all smart enough to see the problems there. I want to talk about the assumption that hospice really can help you live safely at the Assisted Living Facility.

To a point, hospice can help you remain in your ALF apartment as your disease progresses. Unfortunately, many ALFs seem to think that hospice can help you stay there no matter what. That’s just not true. There is a time when a nursing home is a better choice. None of us want to admit that time has come, but there is a limit to the amount of care an ALF can give even with hospice involved.

Here’s the rub. Most hospices are shy about telling you that it is time to move out of the Assisted Living Facility because the facility is the one that referred you to them in the first place. The ALF is referring you and probably a few others in the building to the hospice as an effort to keep their apartments full. A hospice that starts encouraging patients to vacate their apartment will be a hospice that stops getting referrals from that facility. It is a very hard spot for hospices. Again, I’m not here to discuss the ethics of this situation because they are probably clear to everyone. (Patient safety is priority number one. Right?)

All I’m doing here is trying to let you, the patient/family, know that neither your Assisted Living Facility or your hospice is a good unbiased judge of when you are no longer safe to live in assisted living. You have to make the call on your own. The reality probably is that if you are asking the question, you know the answer. Nobody wants to live in a nursing home, but sometimes it is the best/safest place you could be.

3
comments:

marachne
said…

I have to comment on this, because I am really concerned about your sweeping generalizations.

First my bona fides — I am a hospice nurse, but I am also a doctoral student who has been part of a research team studying hospice in ALFs (we interviewed hospice RNs, ALF RNs and ALF direct care workers). I will be doing a follow-up study of family members of ALF residents on hospice for my dissertation.

First of all, an ALF is not an ALF is not an ALF. ALFs are regulated (to whatever degree they ARE regulated) by the state, and what constitutes an ALF and what sort of policy regulates the institution ranges greatly from state to state.

For the next part I will talk only about ALFs in my state (Oregon, where they were invented) which has very loose regulations regarding ALFs.

1) Very few of the hospices were referred by the ALF. Some ALFs have several hospices serving residents. Many hospices are part of a larger health care organization that the resident may already be enrolled in. While it is clear that some hospices do a better job then others in the ALF setting, there is still reluctance on the part of the ALF RN to push a resident and/or family towards a specific hospice.

2)ALFs do not always want to keep people “as long as possible.” In general, having someone at EOL in an ALF means a greater burden on the staff and greater liability. Some ALFs insist on having either paid help or a high level of family involvement when someone is on hospice. What is more likely is that people will be sent out to the hospital with the hope they die there.

3) Some people, for reasons good and bad want to keep their family member in the ALF for as long as possible — even when it is a bad idea. They may be trying to honor the residents request to die at “home” or it may be for other reasons, but the family can be as big an obstacle to appropriate transfers as any other agent.

4)If you run a hospice, train your nurses about working in ALFs, and, if possible, have consistent assignment to the ALF. In Oregon, at least the “med aides” are not licensed and therefore cannot assess. So PRN orders must be specific (no titration orders such as 5-20 mg Roxinol Q1-3 hrs), and sometimes with specific non-verbal descriptions. The RN is not always available, the med aides run the show. They have their own way of charting…there are lots of things that make it very different from either a NH or a private home. If the hospice nurse comes in all arrogant and is unable to respect the direct-care workers and collaborate with them (and yes, often educate them about EOL), it will be a failure.

I could go on, but now is not the time or probably the place. Look for publications down the road about this.

ALFs are growing, their population is aging, their residents often have complicated trajectories and multiple morbidities (including cognitive impairment). The problem is not going to go away.


Anonymous
said…

Our relative did not personally sign up for hospice and the family opposed it. She was also under an involuntary guardianship so the family had no rights.CA was the state where this occurred.
Agree that hospice is a way to keep the person at the assisted living/board and care. Our relative had hospice for over a year and she was not the only one who had hospice.With all their problems, a nursing home is accountable to the federal government and state. There are few regulations for these assisted living/board and cares.I can only say be careful about going into board and cares/assisted living and about hospice at the board and care.Our relative
died in a terrible condition.


Anonymous
said…

I am a Hospice Social Worker. I work in Skilled Nursing Facilities and Assisted Living Facilities. There are great difficulties in these collaborations. Relationships must be built between the two staffs. If it is not a collaboration – by fault of either party it will be a failure. It is our responsibility to provide the best possible care in the Patient’s current setting. Sometimes emotional needs may outway safety needs and Patients stay in settings that are less than safe. This could be in skilled nursing facilities, assisted livings or in their homes. There are no cut and dry answers – every patient will be different. All we can do is educate families about Patient needs, Hospice services and facility capability.