ADL activity: baking a file into a cake
As I mentioned in my 8/24/09 post, some people consider being placed in a nursing home (long-term care/LTC facility) tantamount to a life sentence in a prison. The stereotype is powerful enough to make some people view even assisted living facilities as a '"sneaky back door" into LTC, thus fueling resistance to discussing alternatives to current living situations as part of the aging process.
Various organizations and publications develop guidelines for the general public to consult when considering LTC placement for a family member. One example was in Aging Well's e-news 1, which reviewed some issues of evaluating the quality of life in LTCs. The closing sentence didn't sit well with me: "If you present it as a temporary situation, it might be easier to talk about." But how many people really have confidence that an LTC placement will really be only temporary? I've never been willing to raise anyone's hopes about LTC placement being "temporary" unless I've been confident someone would be available to advocate effectively for services most likely to result in a discharge from LTC if it's at all possible. My reluctance stems in no small part from when I practiced OT in LTCs early in my career; and has not been assuaged by what I have observed when visiting elderly friends in LTC since then.
When I worked in LTC, I "planned prison breaks" with several residents. I didn't necessarily believe at the initial evaluation that every resident insisting that s/he had been inappropriately placed could in fact live safely outside the LTC. However, I was willing to create OT interventions that engaged my residents in developing their own discharge plans, with emphasis on demonstrating their occupational abilities for the powers that be. I made it clear that I couldn't promise I'd "get them out." I believed the process of trying would be occupationally significant, though I didn't use that phrase with my residents. I also believed that the residents that really needed to be there would be able to accept it more easily if they could see for themselves why leaving wasn't an option. This belief was supported by the positive changes in the occupations and levels of participation among the residents for whom discharge wasn't viable.
My resident-clients and I had to swim against such powerful tides as census pressures; institutional "traditions" that squashed individuality; doctors; family members; geography and finances. We experienced the terrible paradox of enjoying the restoration of occupational performance and having their hopes and ambitions undermined at every turn. There were a few successes; but I decided I wasn't temperamentally suited to continue to practice OT in LTCs, so I left for the world of voc. rehab. and disability case management practice. This was well before the Olmstead decision2 and the increase in assisted living facilities; but what I've seen in the intervening years hasn't convinced me that things have changed much for the better. The LTCs where friends and in-laws have lived appeared to assume that everyone who wasn't there for sub-acute rehab. absolutely belonged there for the rest of their lives. When I talked to the "inner circle" family members about advocacy issues, none wanted to "rock the boat". Some said they didn't want staff giving their loved one less personalized attention as a result of "meddling family." Others stated that having a non-relative (me) try to help address the possibility of discharge would be seen by staff as "siccing" someone on them for "no good reason." I've been surprised and disturbed that some people believe that LTC staff would retaliate against the residents for anything a visitor says or tries to change about a resident's situation.
My fellow OTs recognize that such responses from family members and other "outsiders" stem from far more than just negative stereotypes of LTC, so I don't need to get off on that tangent now. But such responses speak to the need for OTs in LTCs to be more active "internal" case manager/advocates for their residents. OT advocacy also engages the family members who are struggling to do the best they can for their loved ones, and who perhaps wrongly think that leaving them in LTC is the only alternative.
Several years ago I participated in an online mentoring program for OT students. One of the class assignments that the students and mentors discussed involved a case study of a person newly admitted to LTC. I saw elements in the case that made me question the placement, and I kept challenging the assumptions the students were demonstrating in their analysis of the OT treatment options. They all seemed stumped by the concept that people might be put into LTC for reasons that didn't warrant keeping them there.
I hope that health care reform in the U.S. will result in making aging in place and geriatric case management (GCM) services more available to more people so that OTs can be at the forefront of making sure that the only people in LTC really can't live anywhere else.
1 Kansas State University: "When Choosing a Nursing Home, Residential Freedom Is Important"
Aging Well enews Feb. 2009
2 Olmstead v. L.C., 527 U.S. 581 Sup. Ct. (1999).