Hospice and functional decline

An interesting new paper in the Journal of the American Geriatrics Society (JAGS) on different patterns of functional decline (ability to walk, eat, cognition) among persons who were in hospice care and ultimately died. The most important point of the paper is that there is great heterogeneity in ability to function, even on the last day of life.

In an inverse probability–weighted sample of individuals who had a PPS score recorded in the last day of life (n = 1,959, 22.6%), 35.9% had a PPS score of at least 40, indicating some oral intake, variable mental status, limited self-care, and an ability to get out of bed for at least part of the day. [my note: PPS in this context is a standard functional status measure often used in hospice and palliative care settings; 10 is quite poor, 90 is very good]

Two points on hospice policy here, both related to MEDPACs great interest in (shortening) long stay hospice users. First, over one-third of patients in this sample had reasonable functioning on the day they died. This shows the difficulty of predicting death with any precision, even among the subset of patients enrolled in hospice (all patients in this study died, so this is not an issue of discharging alive from hospice). Second, table 2 from this study demonstrates the current reality of hospice as not simply being used to treat Cancer; a broader set of conditions including dementia and debility(or frailty) are also included.  Such conditions tend to have a less clear disease course than does Cancer. Both the difficulty of predicting death, and the spread of hospice into non Cancer diagnoses (which has been a stated goal of Medicare hospice policy), have likely contributed to the  increase in relatively long hospice stays that have drawn so much policy attention. More work to demonstrate the link between functional status and length of hospice use/patterns is likely to be an important part of any Medicare hospice payment reform.

ScreenHunter_01 Jan. 29 15.46

Pamela Harris, Esther Wong, Sue Farrington et al. Patterns of Functional Decline in Hospice: What Can Individuals and Their Families Expect. Journal of the American Geriatrics Society 2013 online first.

About Don Taylor
Professor of Public Policy (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute), and Chair of the Academic Council at Duke University https://academiccouncil.duke.edu/ . I am one of the founding faculty of the Margolis Center for Health Policy. My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

3 Responses to Hospice and functional decline

  1. Brad F says:

    You would need to know the PPS scores of those not placed in a hospice.

    How folks look and score may have nothing to do with LOS. In fact, the subset who dont come into hospice–for the very reason they score higher–may actually live longer and skew the ALOS downwards in EOL facilities.


    • Don Taylor says:

      Brad F
      The payment issues in hospice will have to be worked out only among those choosing hospice. It is an inherently self selected group of patients. We are actually working on a paper that has PPS on community based Pall Care and then track the subset into hospice and most all in both ‘arms’ dead by end, so we could test what you say about PPS as the selection variable….will take a look at this.

  2. Pam Harris says:

    Don, thanks for putting out the word about our paper. I am the first author for the paper and am working with a coalition of hospices looking at clinical questions for which we can pull data from a common electronic medical record.

    In this case, we were interested in change of PPS among hospice patients based upon diagnosis, partly to see if we could determine an average rate of decline that might help guide us in evaluating patients for hospice recertification or decertification decisions. Since hospice patients are still referred to care far too late in the course of their diseases, however, most of their decline occurred prior to hospice admission, leaving relatively little decline left to occur before death (small interval changes in general across diagnoses). The three patterns of decline will probably not surprise hospice practitioners. It was a somewhat unexpected result to find so many patients with PPS of 40% or greater on the day of death, though. This type of data may eventually help us advocate for changes in the hospice criteria and/or payment structures.

    Thanks again for the shout out. Pam Harris

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