Thursday, July 2, 2009

Pall-Pourri: Some reviews; Death in ALFs

CA has a nice review, directed at oncologists, about discussing prognosis with cancer patients, with a particular focus on end of life care planning/hospice decisions/etc. Has a lot of practical language examples. Good one for the teaching file.

Gerontologist has a qualitative study about hospice in the assisted living setting. It involves semi-structured interviews with ALF staff members and caregivers about death & hospice in ALFs. It thoughtfully discusses some of the barriers, particularly given that ALFs are designed for stable, somewhat independent individuals which does not describe most hospice patients, at least in the final weeks of life. I thought this section was quite notable:

Rather, if an ALF was committed to providing EOL care to a particular resident, the staff went far above and beyond the usual level of care provided to other residents or described in their policies. The ALFs provided much complex care such as assistance with all activities of daily living, increased monitoring of symptoms, rapid and frequent changes in medications, skin care, mouth care, and emotional support. Two factors, the length of time the resident had lived in the ALF and whether they were well liked by the staff, were consistently associated with whether the ALF would support the resident’s staying in the ALF as levels of care need increased. The more ALF staff knew the resident and liked them, the more likely they were to bend rules or go “ above and beyond ” in trying to facilitate dying in the ALF.
Which is admirable, and the right thing to do of course for those patients. However this is the problem: ideally one should not need to rely upon the good graces/dedication/love of your ALF staff in order to be able to stay in you ALF home until death. The way ALFs are structured/staffed now however this is the case and it puts many patients in a position of having to leave home to die. Of course many 'home-home' dwelling patients need to do that as well, and it's not the fault of ALFs that this is the case; they weren't designed for this. Anyway - the paper discusses all of this in detail.
Chest has a review about pain management in ICUs, specifically in end of life settings. It's actually a much broader overview of death in the ICU, cultural issues, caregiver issues, etc. Not too specific about pain management itself, but worth a read for the larger issues it discusses. E.g.:
Although the relief of suffering for patients in the critical care setting is of prime importance, suffering experienced by their family members and those engaged in caregiving also deserve attention. Of 906 critical care nurses surveyed about their experiences with ICU patients at end of life, 78% thought that dying ICU patients frequently (31%) or sometimes (47%) received inadequate pain medicine. Nurses who understood the principle of double effect (98% of 906 surveyed) agreed that administering analgesics to decrease patient pain, even though there might be an unintended consequence of hastening death, is an ethical way to treat a dying patient. Yet other nurses have identified lack of adequate pain relief for their patients as one obstacle to providing good end-of-life care,and they believe that effective symptom control is a prerequisite for a dignified death. When nurses provide care that does not relieve their patient's suffering or when they follow orders for pain medication even when the medications prescribed do not control the patient's pain, they are at high risk for suffering moral distress. ICU nurses can be prepared with the knowledge and skills to make decisions about patients' analgesic needs and be provided guidelines or protocols that will assist them in making analgesic treatment decisions. If they are provided the time necessary to titrate analgesics according to the patient's response by being relieved of some of their other responsibilities during this period, their contributions to patient comfort may increase while their vicarious suffering decreases.

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