Quality improvement works best when there is widespread agreement on the aims to be pursued. Some potential aims are probably too controversial for teams to take on without caution and thought, perhaps especially when the society is quite ambivalent about the ethics involved. For example, many patients (before dementia) and their families (now) may think that it would be better not to live for long with dementia, but a team should probably avoid aiming specifically to accomplish that end. While one study from the Bedford VA showed that good hospice care had a small effect on shortening life, that was not the aim of the project. The project aimed to provide good, comprehensive support.
Whether and how to provide artificial nutrition has been a strikingly important example of societal anxieties. Artificial nutrition has not actually been shown to prolong life or to improve its quality-but it has not been shown to engender overwhelming harms, either. Some people see artificial feeding as something like "chicken soup," a potent symbol of caring. Others see it as "depending on a machine" and therefore find it fully offensive. Others are conflicted themselves. The more than 50 appellate court cases make it clear that the courts support good decision-making practices with regard to whether artificial feeding should be forgone. Thus, it is quite legitimate to develop programs to support good decision making by families and clinicians. However, the uncertainty and divisiveness over whether artificial nutrition is or is not part of a generally good end-of-life course for dementia patients makes it unlikely that a care program should aim to achieve low or high rates of use.
Another area of societal discomfort is the degree to which families should be expected to "care for their own." How much burden is it reasonable to expect spouses, children, and others to take on? Some feel that there is no reasonable limit, except for abject impossibility of doing more. Others feel that society should protect people from having to impoverish themselves or lose out on the chance to live their own life because of the dementing illness of a family member. Again, within the bounds of societal support (e.g., Medicaid), families and programs have substantial discretion, and good decision making is generally supported as worthwhile. However, the lack of societal consensus means that institutions should avoid actually aiming to protect families or to impose more burdens upon them.
In general, quality improvement by caregiving teams works best if their aim is broadly held to be a good thing, and venturing into areas where there are strong and contentious ethical issues should be done with substantial caution. Enabling patients (in advance) or families (now) to understand and act on their options usually is not contentious.
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].