Author Jeanie S. Kayser-Jones responds: I sincerely thank those who responded to our article for their thoughtful comments. One reader noted that had Mr. Daly received hospice care, a team of health care professionals could have provided an "extra layer of care." While some hospices provide superb care, this is not always the case; 42 of the 117 residents in our study received hospice care, which was quite variable in quality. Hospice care, for example, didn't contribute to higher quality pain management (see article reference 5).
We agree with the reader who noted that "inadequate staffing is of primary concern." High-quality end-of-life care is dependent upon having an adequate number of well-educated staff who are adequately paid. Until this occurs, we will continue to see patients suffer as Mr. Daly did. Nursing homes are a multibillion industry, and sometimes profit making takes priority over the quality of care. In December 2007, when Manor Care (a nursing home corporation) was acquired by the Carlyle Group in a $6.3 billion deal, the CEO personally grossed between $118 million and $186 million by cashing in his company stock and exercising his stock options.1 When private equity firms purchase nursing homes, they may cut their costs by reducing the number of RNs; profits increase while the quality of care declines.2
One reader states that this case should have been reported to the appropriate authorities. Reporting is important but frequently does little to resolve the problem. If reported, the facility probably would have received a deficiency from the state department of public health. Nationally, the number of deficiencies has increased over the last decade, and in 2005, 2006, and 2007, more than 91% of nursing homes surveyed were cited for deficiencies (see article reference 2). But most deficiencies don't lead to any enforcement, so there is often no consequence. The reader also states that we were researchers first and nurses second and should have stopped the research. I disagree. We did what I believe, under the circumstances, was most helpful to Mr. Daly: we stepped out of our roles as researchers and intervened as nurses. We arranged for a wound care expert to evaluate and advise on the care of Mr. Daly's pressure ulcer. When he was hungry, we assisted him with his meals, and we provided care and comfort to him and his wife during the last weeks of his life. Further, by publishing this paper in AJN, we brought the problem to the attention of others.
One reader states that she has incorporated this article in her BSN class in culture and ethics. We sent the article to advocacy groups, including the National Citizens' Coalition for Nursing Home Reform. They sent our paper to the staff of the U.S. Senate Special Committee on Aging as evidence of the need to address this issue in committee oversight and hearings on elder abuse and transparency of nursing home ownership. Nursing investigators are often faced with role conflict.3 If we stop the research when we encounter problems, we won't have the data necessary to effect systemwide policy change, as we did with a previous study.4
In her Editorial in the January issue, Diana Mason appropriately states: "I hold all nurses—and society—accountable for the continuation of such horrors." We must all be advocates, at every level, up to and including the U.S. Congress. And our professional organizations must speak out for those who can no longer speak for themselves.
1. Brickey H. Manor Care sale would enrich execs. Toledo Blade
2007 Jul 6.
2. Duhigg C. Washington scrutinizes nursing homes. New York Times
2007 Nov 16..
3. Raudonis BM. Ethical considerations in qualitative research with hospice patients. Qual Health Res
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4. Kayser-Jones J. Malnutrition, dehydration, and starvation in the midst of plenty: the political impact of qualitative inquiry. Qual Health Res