I have now been blogging about the new grief for well over a year. It's a term that my colleague Dr. Barbara Okun and I have coined to refer to the prolonged and stressful process that patients and their families alike are increasingly faced with as modern medicine continued to make inroads in its ability to prolong life and stave off death, even in those who not so long ago would have died quickly of a terminal illness. In our book, Saying Goodbye: How Families Can Find Renewal through Loss, we have laid out a "road map" that families can use to help make sense of this process, and also to know what they can do to take more control and make this process less stressful on everyone.
The New Grief
The new grief begins when a loved one receives a terminal or potentially terminal diagnosis. This event throws the family (including the patient) into a state of crisis. However, it also marks only the beginning of a process that today can go on literally for years. It can be marked by periods of remission as well as by relapses and complications. Along the way it can cause severe stresses on loved ones and caregivers and their own families.
At some point, if a terminal illness progresses, even gradually and despite periods in which it appears to be in remission or at least under control, the patient and his or her family may find themselves at a point where family and community resources alone are not sufficient to meet the patient's needs, to provide for his or he safety, or both. Though rarely something that either the patient or the family faces cheerfully, the option of nursing home placement may be inevitable. It was poignantly captured in the film, Away From Her, in which a devoted husband must eventually confront the reality of his own limitations as a caregiver and seek a place where his wife can be both safe and receive as much care as possible for her Alzheimer's.
Nursing Homes: What People Who Work There Have to Say
When and if the time comes for the family to come to this same crossroad, a recent survey of nursing homes by the federal Agency for Healthcare Research and Quality (AHRQ) is instructive. Its results are important because the source of the information collected and reported were largely front-line nursing home staff. Specifically, 70% of the 16,000 respondents to the AHRQ survey were either nurses aides, support staff, or licensed nurses. This is the group of people who interact most frequently with nursing home residents on a daily basis. It was the perceptions of this group that the AHRQ sought to assess in an effort to gauge the quality of care offered.
The areas that the AHRQ surveyed included things like communication (with patients as well as other staff), management support for patient safety, teamwork, and opportunities for staff training.
If you are in the position now (or approaching it) of thinking about nursing home placement, consider the following findings, which come from the "horse's mouth" as it were; the staff who work in these places:
- Staff who work in smaller nursing homes (49 beds or less) rated them highest on patient safety. Staff in these facilities were also much more likely to say that they would recommend such a placement to their own friends and family. Overall, staff in such facilities rated the overall level of care as "excellent" or very good.
- Although larger nursing homes did not get bad ratings, their ratings were not nearly as good as these from staff who worked in the smaller facilities.
- Nursing homes operated as non-profits got higher ratings from the staff who worked there than did nursing homes operated as for-profit businesses.
- Again, though for-profit organizations were not necessarily panned by those who worked in them, neither were they rated as highly by those who actually work in them.
The above, in combination with family members taking the time to visit some nursing homes, may be very useful when it comes time to choose among options. Interestingly, those who may be inclined to think that bigger is better, or that something you pay more for is better, may be in for a surprise.
For more information and resources visit www.newgrief.com