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Fundamental questions remain; science, tech creating new challenges
"Old wine in a new bottle"
[Editor's note: With this month's issue of Medical Ethics Advisor, we mark 25 years of efforts to bring you the most up-to-date research and news in the ethics arena of health care. Going forward, we hope to continue this tradition, and we invite you, the readers, to share your own ideas and experiences with our editorial advisory board and editor.]
To gain perspective on what the last 25 years have brought forth in medical ethics, Medical Ethics Advisor spoke with three experts in a position to know. Their consensus was that while there have been some genuine changes, primarily in the level of transparency with which hospital activities occur for patients and their families, many of the fundamental questions are still being debated.
"I think there's a lot of medical ethics that we're still talking about — that we've been talking about as long as I've been in the field, and I've been in the field about 30 years," says John D. Banja, PhD, clinical ethicist, Center for Ethics, and associate professor of rehabilitative medicine, Emory University in Atlanta. "I still think we have problems with informed consent issues; we have ongoing issues with privacy and confidentiality."
Marc D. Hiller, DrPH, of the Department of Health Management and Policy in the College of Health and Human Services at the University of New Hampshire in Durham, NH, voices a similar sentiment, saying, "I'd say the disappointing reality is that, given the nature of the ethical dilemmas, I would argue that we have not successfully resolved many of the ethical dilemmas that plagued us 25 years ago.
"We're still debating issues regarding the creation of life and when does life begin. We're still debating issues with regard to what constitutes death, and who has the right to make decisions regarding end-of-life decision making," Hiller says. "So, we're still being pushed as much, I think, as we were possibly 25 years ago in wrestling with questions on both ends of that continuum, in terms of before or at the beginning of life, and on the opposite end, the end-of-life questions."
Another one of the things that is "clearly true" is that "ethicists have become more of a routine part of the health care environment, whereas 25 years ago, it was unusual to have a professional ethicist around — it was quite a luxury," says Mark Kuczewski, PhD, The Fr. Michael I. English, SJ, Professor of Medical Ethics, and director, Neiswanger Institute for Bioethics & Health Policy, Stritch School of Medicine, Loyola University in Chicago, and current president of the American Society for Bioethics and Humanities.
"Virtually all of the major academic centers have people who devote a significant amount of their time to medical ethics," Kuczewski says. "And increasingly, hospitals and health systems in the community have access to additional resources, as well, sometimes from full-time people if they are a large system and fortunate. But more often, from people who are part of their administration or caregiving staff who get additional training, such as a masters degree."
End-of-life issues number one
"Probably the most glaring problem that endures and continues is end-of-life issues, where, when you stop and think that the Karen Quinlan case was in 1975-76 — that's 35 years ago . . . and yet hospitals all over the country, as we speak, are having trouble over issues of discontinuation and withholding of life-prolonging treatment," Banja says.
Like the Karen Quinlan case, Banja notes, the issues "oftentimes are relational issues . . . between the health care team and the family, the patient's family, but oddly, the proponents of the positions have changed."
For example, in the time of the Quinlan case, "it was the health care providers who aggressively wanted to treat [such] patients, when family members were saying, 'We don't want you to treat them anymore.' Today, it's just the opposite, with the health care team being quite comfortable in de-escalating treatment — and usually a very demanding family wanting you to do everything for their loved one," Banja says.
Addressing end-of-life questions is probably the number one issue confronting hospital ethics committees, Banja says.
"I think the root issue that maintains this as a problem is the failure of health care providers to improve their empathic communications," he notes. "I think we still have a long way to go in our medical curriculum and in our nursing curriculum to teach health care professionals how to conduct emotionally uncomfortable conversations, and to do it in a way where the patient or the family — usually it's the family in these end-of-life cases — feel respected, feel understood, and feel supported. So, [then] they can go ahead and make a decision that they would, of course, not wanted to have made, in a situation that they would give anything to have come out differently than their loved one dying," Banja says.
Not only does he think medical schools and nursing schools should offer specific courses in communication skills, but also they should be "repeated and revisited" every year for these students, until they become adroit in "emotionally stressful, emotionally difficult kinds of conversations."
Not only do empathic conversations help the patient and family feel more appreciated and respected, they also often help health care providers elicit more information from the patients and their families, "so that [the health care provider] can make sound clinical decisions," he says.
"I think it makes them more appreciative of the doctor-patient relationship — less narcissistic, more appreciative of what is really a relationship, upon which a lot depends," Banja says. "The outcome of the course of treatment may very, very often depend on how much that patient or family members trusts the doctor."
What is old is also new
As a result of ethicists being more of the norm on health care provider staffs than the exception, "increasingly, health care institutions turn to such people when a new area of issues opens up," Kuczewski says.
"I think there are some areas that we've seen newly evolving or recently coming into the limelight, one of which obviously, we've talked about in the context of public health — disaster planning and that area — but I really think that one of the driving forces behind what we've seen — that goes back to the beginning but has evolved into new issues — is the impact of advances in science and technology," Hiller says.
"And as science has advanced and as new technology has evolved, we're confronting a lot of different issues that reflect the main, core ethical questions but manifest themselves in different ways," Hiller notes.
In clinical ethics, Hiller suggests that "the biggest domain that we're going to be wrestling with in the future is regarding genetics."
With the successful mapping of the human genome, he says, a host of issues have come to the fore, such as stem cell research and issues involving genetic testing. Within genetic testing, society will face questions such as "who is going to be tested for what, and who's going to have access to results of those tests — and the risk of discrimination and employment-related questions that come up within the context of genetic testing [and] the workplace.
"We're probably going to be wrestling with, again, issues [that arose] within the last decade or so that are becoming more prominent in the context of: What are the issues associated with what has been referred to or termed designer babies, where people can go out and say: 'I want this characteristic vs. that characteristic in my newborn,'" Hiller says.
Another issue related to assisted fertilization came to the forefront — not just in health care circles, but also in the mainstream consciousness — just last year, with the birth of the octuplets.
"As more and more people, because of changes in our society, are choosing to create families later in life, and the inherent need often to benefit from technologies that have advanced, there are implications of those technologies — obviously, one being that multiple births are now becoming much more of a norm than they were 25 years ago," Hiller says.
Multiple births, in excess of twins and triplets, create ethical dilemmas. One of those is whether a decision should be made prior to birth to prevent multiple births, such as the octuplets to one parent, Hiller says.
Hiller expects even more questions related to genetic screening and testing. For example, if genetic screening and testing uncover that an individual is at a higher risk for a particular disease, should that individual be told of his or her increased risk?
"Is it fair to tell someone, 'Yes, you are at some point going to develop Huntington's chorea, and we have absolutely no way of preventing and/or treating that disease, so you can live your entire life — however many years that may be — under this fear that this is going to happen to you, and there's nothing that can be done to help you,'" Hiller says.
"Is it better for that person not to know that and live their life . . . with a sense of quality?" Hiller asks.
Ethicists are now "at the table"
The real change, according to Kuczewski, is that these types of high-level problems, which require complex answers — from the new reliance on medical homes to repatriation of ventilator-dependent undocumented immigrants — is that medical ethicists are now at the decision-making table.
And ethicists, he notes, contribute to the topics that are top-of-mind, in many cases.
"Typically, ethicists start to look at issues and to write about them and to chart them," Kuczewski says. "Then, there's a complex process that tends to happen that brings an area to the fore. Certainly, in research ethics, scandal has often done that, [like] the Jesse Gelsinger case in the 1990s, which brought [forth] the relationship of a study sponsor to a physician investigator, so that brings it to the fore. And then, there is kind of an orderly process where you do have reports issued from core bodies . . . that offer guidelines — and again, ethicists participating in this process the whole way," he notes.