It is certainly understandable, even commendable, that those who provide palliative care consultation services would want to have a better understanding of variables that may affect the quality of care they provide.  Some of this understanding will be acquired “on the job,” as one provides these services—at least by perceptive consultants.  But systematic research is likely to bring other important matters to light, challenge assumptions that might otherwise adversely affect the services offered, and so on.  In short, the recipients of these services can benefit even more from consultants who effectively incorporate research results into their practice.  The sort of research interests that Dr. Menendez has are consistent with her concern to provide the best services she can—and to help others do so as well.

At the same time, she should have some real concerns about whether it is appropriate for her to serve as therapist and researcher for the same clientele, whether individuals or family units.  The informed consent issues raised in Part II of this case illustrate why.  Apparently some primary care physicians, intentionally or inadvertently, have led family members to believe that the quality of service they can expect will be adversely affected by not agreeing to participate in the study.  If this worry is engendered by their primary care physician, who is not providing the therapeutic services in question, it makes good sense to suppose that the therapist/researcher could be seen as equally, if not more, threatening.  Will the therapist/researcher be less interested in those patients, or their family members, who indicate they do not want to participate?  The very fact that patients or family members might worry about this could have a negative affect on the therapeutic relationship they have with Dr. Menendez. 

So, as researcher, Dr. Menendez might restrict her research to patients and their families who are not under her care.  This means that if her own patients and their families are to be participants in the sort of research project she is interested in, another researcher would be needed.  There is still no assurance, of course, that the problem will be solved.  Patients and their families would be informed that, in addition to consulting with their therapist, there will be someone else involved, albeit for research rather than therapeutic purposes.  Will they worry that the therapist and researcher are cooperating with each other in such a way that their therapeutic services will be affected by not participating in the study?

Adding a researcher to the mix may raise other patient and family concerns.  Not only are they expected to discuss sensitive, private matters with a therapist, they are to be observed by a third party, a researcher with whom they have no other relationship.  Aside from causing them discomfort, this might also have a negative affect on the therapeutic relationship by, say, causing them to be more reticent.  If this factor cannot be ruled out, this could also affect the validity of any claims about what goes on between therapist and patient/family that they are not being observed for research purposes—whether by their therapist or a third party. 

There does not seem to be a sure way of totally eliminating such worries about the possible adverse affects of the research on therapeutic services, or worries about the validity of the research data itself.  A point to be emphasized, however, is that special care needs to be taken in regard to informed consent.  Patients and their families need assurances that participating (or not participating) in the research project will not affect the quality of services they will receive.  The scenario in Part II suggests that very little, if any, monitoring of the informed consent process was done in regard to the role of the primary care physicians.  At the very least, this issue should be addressed.  The concern is that undue pressure might have been used on patients and their families, or that this is their perception.  But the concerns do not stop there.  As just pointed out, additional worries about the quality of care provided by the therapist/researcher remain, even if referring physicians handle things very well.

These problems aside, Dr. Menendez, and perhaps her patients as well, would like to have full participation by both patients and family members.  What if one or more of the family members express reluctance to participate, or outright refuse?  Noncoercive efforts to persuade may be appropriate, although it can be very difficult to determine where to draw the line when attempting to persuade the reluctant to join with their already willing family members.  The researcher already has strong allies in this circumstance, unless, of course, there is a history of significant tensions or divisions among family members.  So, additional efforts to recruit family members can easily become a matter of undue pressure.  Dr. Menendez may be disappointed at not gaining the consent of all patients and family members, but this need not be fatal to her project—especially if she is joined in her research efforts by other researchers, thus enlarging the potential pool of participants.

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This is a good question, but a complex one. In general, I'd say that Fred Cuny's basic approach includes trying to be prepared to act quickly and effectively before a disaster strikes. The problem is that it seems they we are so often taken by surprise. In the case of Katrina, hindsight might have told us that the levees put the area at high risk for bad things if they don't hold. And, it seems to me, there were engineers who had issued warnings about their inadequacy. Still, was anyone in a good position to anticipate the magnitude of the disaster that could result from their failure? Well, suppose that, realistically, we should always expect that sometime or other, some way or other, we will be taken by surprise in disastrous ways--even with our best efforts to take preventive measures. Once disaster strikes, Cuny would say that engineers will be needed. His book on disaster relief (Oxfam/Oxford) focuses mainly on how best to help after disaster strikes. This, he says, requires one to figure out both how to provide assistance & knowledge of what will really count as (long-term) assistance. This latter knowledge, he says, requires knowing how those who are victims see things, what they will be able to do for themselves once the rescuers leave, and so on. For Cuny, quick fixes are like bandaids--something that may be needed in the short run (to keep the bleeding under control). But Cuny was interested in long-term fixes. An understanding of local needs, abilities, etc. is something that one could try to acquire well before disaster strikes. This is because the understanding that is needed is not just of rescue tactics, but of what a community needs when things are going well (after the rescuers have left). I can't do justice to what Cuny had in mind in short space (after all, he wrote an entire book on this). But it seems that, ideally, good rescue work after disaster strikes requires leadership that is well informed about the life conditions (past, present, and future) of those who might be victimized by disasters (a disproportionate number of whom, unfortunately, typically are already living in poverty, neglect, or in oppressive circumstances). In any case, more than specialized engineering knowledge is needed & there needs to be a readiness to learn about these other matters of importance (as it is unlikely that even someone as conscientious as Cuny would have all the needed knowledge ready-to-hand). Formal, interdisciplinary education may well have a role to play here. So, what kind of "corporate backing" might be most useful in light of Cuny's approach? Not money for bandaids only, he might have said. Money for educational programs designed to prepare engineers to do effective disaster relief work as engineers might be a good investment. Cuny and his disaster relief agency should not be the exception (as they have been perceived by many, including themselves, to be); they should be more commonplace in the engineering professions. The corporate challenge, then, could be to encourage and support engineering programs that can be expected to give us more engineers who will be ready and able to respond constructively to disasters like Katrina. At the same time, this sort of program could focus on the need for preventive measures, or at least measures likely to reduce the impact of Katrina-like disasters. I hope these comments are at least a little bit helpful, belated and broad as they are. Read Less

Michael Pritchard 
Western Michigan University

In this case, it is very important to sort out the ethical questions facing Deborah and more general questions about what would be a desirable outcome. If, in fact, a second story was added to the house and it is the desire of the church, its new owner, to preserve the house in as close to its original form as possible, then removal of the newer section of the house would be a desirable outcome. Furthermore, if the background information about the motivations of previous owners of the house is reliable, we might add that justice is on the side of the church as well. However, as a graduate researcher and consultant in the field of historic preservation, Deborah must focus more specifically on her role in this controversy.

It is noted that "the preservation code clearly indicates that unalterable changes should not be recommended unless there is clear evidence." The rationale for this provision would seem to be that once an unalterable change is made, there is no going back. That is, if it turns out that the unalterable change is a mistake, the preservation project fails in a fundamental respect. In the present case, if the second story is destroyed and it later is confirmed that it was part of the original house, the effort to preserve the house in its original form fails. So, recommending the removal of the second story is a matter of crucial importance for the preservation project.

The case also indicates that, absent Henry's testimony, Deborah does not have enough evidence to recommend demolition. Should Deborah include his remarks to her in making her assessment? This question can be approached from two vantage points. The first focuses solely on the evidence; the second focuses on Deborah's relationship with Henry and the likely consequences of including his remarks in her considerations. I will explore these in turn.

Will the inclusion of Henry's remarks make the evidence strong enough to recommend removal of the second story? Here, I think, it is important to distinguish what Deborah believes is the case from the strength of available evidence. Given the rapport between Deborah and Henry, it is likely that Deborah believes that Henry is being truthful with her. Whether this means she also believes he is accurately recalling what his mother said is another matter. It is possible that Henry, though well-intentioned and sincere, has a mistaken memory. It seems important for Deborah to try to look at matters from the perspective of a preservationist who has not had a personal relationship with Henry. She could go to her adviser to discuss the question of evidence. She need not identify Henry as someone who has confided in her. She can put her questions quite hypothetically: "If someone in the family were to tell me privately that he or she had good reason to believe that a second story was added, could that count as strong evidence in favor of the hypothesis that a second story was, in fact, added? How would this claim be affected by the denials of other family members? Does it matter whether the family member would be willing to make his or her statement publicly?"

My guess, but it is only that, is that her adviser would say that the family member's remarks should not be regarded as evidence in themselves. However, they might well provide one with strong motivation to search for additional physical evidence that the second story was added to the original house. Absent further physical evidence, demolition of the second story should not be recommended. The adviser could also point out that, if clear evidence appears later, the second story can be removed. But if it is removed now and clear evidence shows up confirming that it was part of the original house, the mistake could not be undone.

In making her assessment, Deborah should also consider including Henry's remarks from the vantage point of her relationship with him and the likely consequences of relying on his statement in making her recommendation. As noted, absent Henry's statement, the evidence is not sufficient to warrant recommending the removal of the second story. If she allows Henry's remarks to affect her recommendation but keeps Henry's remarks confidential, she will not be able to show others that a recommendation to remove the second story is sound. However, I have also suggested that even the inclusion of his remarks will not, by itself, warrant this recommendation.

Given these facts, it seems inappropriate for Deborah to reveal Henry's remarks to others. He requested confidentiality. Although he is not Deborah"s "client," respecting someone's request for confidentiality carries some moral weight in itself. Even when one cannot appeal to a professional code of ethics for support, confidentiality should not be breeched without good reason. A likely consequence of making Henry's remarks public would be the sort of breakdown in communication and relationships predicted in the concluding paragraph of the narrative.

Deborah might be disappointed with the conclusion that she should not recommend the demolition of the second story of the house, but she should not view this conclusion as necessarily ending the matter. Her report should include not only the final recommendation, but also the reasoning that led to the recommendation. Assuming that there is some evidence that the second story was not part of the original structure, she certainly can include that evidence in her report. Not recommending that the second story be demolished is not equivalent to strongly recommending that large sums of money be invested in preserving the second story - or, at least, not in a way that could not be undone should stronger evidence show up later.

From: Graduate Research Ethics: Cases and Commentaries - Volume 4, 2000 
edited by Brian Schrag

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