The integral role of ethics in patient well-being at Children's Hospital Boston
Nurses with dynamic careers in pediatric medical ethics are helping to make care better and safer for young patients and their families
Christine Mitchell, RN, director of the Office of Ethics at Childrens Hospital Boston (CHB). (Photo by David Stone for On Call )
Christine Mitchell, RN, MS, MTS, FAAN, is a pioneer in the field of healthcare ethics. Director of the office of ethics at Children's Hospital Boston (CHB) and associate director of clinical ethics at Harvard Medical School, Mitchell has been directly involved in ethics education, clinical practice, and policy making throughout her career. For 23 years, she has co-chaired the Ethics Advisory Committee (EAC) at Children's, which was inaugurated in 1984, a time when Mitchell says the general public and media watchdogs were scrutinizing the complicated issues involved in making treatment decisions for children who were severely handicapped - especially in cases where parents had opinions that differed from their doctors'. Now the EAC is a 20-member, multidisciplinary committee charged with updating staff on bioethical issues, national reports, and legal developments as well as recommending policies for issues that arise during the process of providing care.
Who should decide for children?
As manager of the ethics program at CHB, Mitchell organizes in-house educational programs, mentors staff members, and conducts formal and informal ethics consultations. She says there is a crucial difference between critically ill adults and critically ill children. In adult care, the person has a chance to say what he considers to be an acceptable quality-of-life - that is, to determine the life he or she wants. But children's values and viewpoints are not fully formed, Mitchell says, so they are not able to define precisely what an acceptable standard is to them.
Ethics, according to Mitchell, asks two basic questions: First, what is the best thing to do? Second, who should decide? In pediatrics, answering the second question can sometimes be tricky. While in some situations, parents and the clinical team are able to arrive at a consensus, at other times, the two groups have opinions that differ so greatly that ethics consultations and even legal opinions are required to resolve the issue.
When discussions get to this level, Mitchell applies four basic principles of medical ethics that can usually help parties resolve their differences: beneficence (doing good), justice, respect for persons, and nonmaleficence (responsibility not to harm others). To her mind, these are four of the strongest tools that ethics counselors bring to the table.
Changing perspectives over time
Over the course of her career, Mitchell has seen numerous shifts in the way various parties approach these issues. Some of the most significant changes since the 1980s, she says, involve questions about end-of-life treatment. In the '80s, differences were likely to stem from the fact that hospital staff were willing to try additional interventions while the family felt they should decline further treatment. Since the 80s, according to Mitchell, there have been a number of changes in the way parents and healthcare professionals view treatment options for end-of-life care. "We should always care for children," Mitchell says, "even when we cannot cure them." But now when differences occur, it is more likely hospital staff are the ones urging the end of a treatment that they believe is no longer helping and perhaps even hurting the patient.
"Care is never futile," Mitchell says, pointing out that families can get help getting through these tough times. Through providing access to not only the ethics staff but also to social workers, psychologists, and CHB's Pediatric Advanced Care Team (PACT), which Mitchell calls an incredible resource for palliative care and ongoing support, CHB helps families find the help they need to cope with the stress that comes when a child dies.
Not all ethics consults are about end-of-life issues. Ethics issues are inherent in every new technological, scientific, or social development that affects medicine. With 17,000 admissions and 450,000 outpatient visits annually, Children's is in the forefront of recently identified ethical issues.
For instance, the EAC has consulted on issues relevant to new advances in genetic testing. In one situation, a person whose DNA had been tested did not want family members to be told the results. That raised the issue of what to tell families when a genetic workup is done and information is discovered that might be relevant to others. In another situation, the mother of a baby who had a condition thought to be genetically related was asked to give cells. The woman's husband asked the staff not to tell her the results for fear she would be overwhelmed. The ethicists discussed her right to know, his concerns, and the resources available to deal with the test results before she was given her results.
Safeguarding pediatric research subjects
Maya Mundkur Greer, MSN, APRN, FNP, completed a fellowship in medical ethics through the Harvard Medical School Department of Social Medicine. She traces her interest in medical ethics to situations she encountered throughout her career as a nurse practitioner who specialized in adolescent health, community healthcare, research, and disenfranchised populations who lacked a voice in policy planning. "I wanted exposure to the academic study of ethics," says Greer. "I wanted a framework to analyze problems, especially around harm reduction and resource allocation."
Greer describes the eight-month fellowship as intellectually stimulating and academically rigorous, with coursework, a robust reading list, a research project, and a weekly lecture followed by a three-hour discussion. However, Greer says, the investment paid off in a broader understanding of how to identify all the questions to consider when discussing controversial healthcare issues, as well as the ability to reframe key questions. In 2004, after completing the fellowship, Greer became the research subject advocate in the General Clinical Research Center (GCRC) at CHB.
The role of research subject advocate has an interesting history. In the late 1990s, there were several tragic incidents involving subjects in research studies who experienced severe, adverse, and even fatal reactions to experimental treatment. As a result, the National Institutes of Health (NIH) mandated that the position of subject advocate be developed in all hospitals receiving NIH research funding.
Greer explains that the job description was deliberately left uncharted so the role could evolve into what it should be. The overarching questions addressed were whether subjects were being taken care of adequately and compassionately and how safety in research design and implementation might be improved. Greer reports directly to James Mandell, MD, president and CEO of CHB, which adds clout to her recommendations.
A focus on safety and knowledge
With eight inpatient beds and additional outpatient space, the GCRC supports 140 active protocols conducted by 75 researchers. The specialty staff includes nurses led by Margaret McCabe, RN, PNP, DNSc, a research dietitian, biostatistician, and laboratory staff. Currently, the largest movement in pediatric research is genetic studies. The study of genetics in chronic disease such as cystic fibrosis ranges from genetic predisposition to research on how an individual with the disease responds to medications-and how that, too, may be genetically related. Another very active area of research is the genetic basis of behavioral issues.
One of Greer's roles is to chair the research study protocol-review subcommittee, which oversees an early step in the procedure of approving or rejecting proposed studies. Greer's primary focus is on safety, so she critically analyzes research proposals for specific procedures to guard patient safety and to report adverse incidents. At times, she poses ethical questions to the members. For example, she might ask, "Is this study reasonable to do overall?" She ascertains whether the consent form accurately details potential risks and benefits and adds comments and suggestions to improve the health literacy of the materials.
As in all clinical settings, ethical issues arise every day in the course of delivering care. Greer gives the example of a young child who had autism as well as cancer who was enrolled in a Phase 2 cancer-drug study. The child was upset about the need for blood tests that had to be done at specific intervals and did not want to continue with the study. As the phlebotomist stood by, the parents were put in the position of having to either override their child's wishes or remove him from the study.
The nurses called Greer, who sees a lot of her job as investigative and involving mediation. Greer identified the ethical concerns inherent in putting the child and parents in that tough position. She listened to the boy's concerns and objections, and worked to identify how the staff could be supportive and creative in caring for him. The child chose to take a break, have some refreshments, then have his blood drawn. Later, Greer led a debriefing discussion with the staff.
This situation brought up the ethical issue of assent to treatment, which is different than the legal term consent.
Greer explains that, in the best of situations, a child age 7 and above (depending on developmental level) gives his/her input, gets involved in the decisions, and gives assent to participating in treatment although they are considered too young to give legal consent. Greer's underlying belief is that a child, not just the parents or guardians, should be told about all the potential quandaries before agreeing to participate in a research study.
Education is key
Educating staff, patients, families, and healthcare professionals about ethics is an inherent part of Greer's role as an advocate. Education often involves making resources available to facilitate the decision-making process. The brochure "Parents' Guide to Medical Research," available at http://www.researchchildren.org, contains a video tutorial and frequently asked questions (FAQ), addresses common concerns parents might have about human research, , and offers points to consider before deciding to allow a child to participate in research studies.
Greer also recommends the Center for Information and Study On Clinical Research Participation as a resource for professionals as well as the public about research participation.
Children's Hospital Boston's efforts in the area of medical ethics are being recognized. The Health Improvement Institute, sponsored by the Office for Human Research Protections of the U.S. Department of Health and Human Services, last year awarded CHB its highest honor - the 2006 Award for Excellence in Human Research Protection.
This is the second in a series on medical ethics in the Greater Boston area (Read part 1). Janet Cromer is a freelance writer and regular contributor to On Call. She received the Will Solimene Award for Excellence in Medical Communication for her On Call article "Drawing Out the Best in People" (September 2005), which described the work being done at the Boston Institute for Arts Therapy.