Bioethics is the multidisciplinary field that applies knowledge of health care policy, law, philosophy, sociology and dispute mediation/resolution to solve moral dilemmas in clinical practice and research in medicine and allied professions. Human cloning and stem cell research, which are hotly debated in society, are examples of bioethical issues. Beginning roughly in 2002, neuroethics emerged as a subdiscipline of bioethics that seeks to solve moral dilemmas arising from neuroscientific research and clinical cases of brain trauma and mental illness.
Daniel Buchman of the National Core for Neuroethics at the University of British Columbia said this about his field: “Neuroethics has deep roots in ancient philosophical discussions of mind and brain and has joined this history with contemporary thinking in biomedical ethics and neuroscience devoted to elucidating ethical challenges prior to and during the transfer of new research capabilities to the bedside.” The use of psychiatric drugs and other treatments for patients who are mentally ill, issues related to neuroscience and national security (such as brainwashing) and the use of “designer drugs” to change one’s personality or enhance cognitive function are examples of neuroethical issues.
In clinical or consultative ethics cases, which revolve around an identified patient/client and his or her cognitive status, counselors can play an important role by uncovering the psychological issues belonging to that person and the people around him or her and explaining how those characteristics might influence bioethics or neuroethics decisions. Therapists could assist bio/neuroethicists, the courts and others in keeping those psychological variables “in check” and preventing irrational behavior from being destructive to the ethical decision-making process.
What often receives less consideration, however, are the psychological factors of the participants trying to reach bio/neuroethical decisions. For instance, what types of psychosocial interactions occur between the individuals involved in clinical bio/neuroethical discussions? It is reasonable to suspect that issues such as personal values and cultural issues are presented, but is that enough? Are there situations that go beyond the capabilities of bio/neuroethicists and require more of a mental health approach?
Case of persistent vegetative state
According to a 1991 Multi-Society Task Force on PVS (persistent vegetative state) as cited in The New England Journal of Medicine, individuals are considered to be in PVS when they have been unconscious for longer than 12 months due to brain trauma and also have a poor prognosis. Higher cognitive processes are nonfunctional, with awareness of self and the environment being absent. These patients cannot communicate or follow commands in any way. Sensory experiences may occur but have no conscious meaning.
One of the most famous cases concerning PVS centered around Terri Schindler Schiavo, who died on March 31, 2005, almost two weeks after her feeding tube was removed and her hydration cut off under court order. Terri’s death was preceded by a lengthy court battle between her family and her husband, Michael. The psychosocial questions and issues surrounding the Schiavo case are numerous. What was the state of the marriage between Michael and Terri before she suffered massive brain damage and was put on life support in 1990? What did life and death mean to each participant in the conflict?
Perhaps psychometric testing (for example, the Minnesota Multiphasic Personality Inventory, or MMPI-2) could have assisted in identifying who was best mentally fit to make decisions on Terri’s behalf. Was Michael Schiavo violent toward Terri as some claimed? More questions could be added as possible psychological influences. None of these issues came out in the bioethics proceedings.
Clearly, PVS cases are complex, and the mental health of each participant and the family as a whole has to be taken into account. Mental health and ethics professionals need to ensure that a careful psychological examination takes place, and the courts should require such assessments. The people involved in PVS cases are dealing with heart-wrenching experiences, and psychological assistance is needed.
Health care system implications
On March 23, 2010, President Barack Obama signed into law the Patient Protection and Affordable Care Act, and a few days later, he signed the Health Care and Education Reconciliation Act. Among other major reforms, these two laws allow for 32 million Americans to obtain health insurance who do not currently have coverage. The future of health care delivery is in question, not only because of new governmental regulations and bureaucracy, but because our wavering economy might influence any outcome as well.
New moral and legal questions will challenge the fields of bio/neuroethics in the United States because of health care reform. For example, will new regulations interfere with best practices in medical and mental health services? Will vulnerable populations have difficulties accessing needed specialized treatments and services? Perhaps treatments that are offered now will be excluded or reduced because of cost or rationing. If some of these negative consequences take place, there might be emotional fallout. Everybody hopes the new policies will benefit our health care system, but counselors should remain cognizant of the potential pitfalls of this new system — especially because no one really knows yet how or if it will work.
The field of neuroplasticity has offered discoveries on how patients can rebuild neural networks, even after brain damage, through certain therapeutic experiences and targeted exercises. There are neuroethical concerns, however, that some systematic difficulties might impede clinical practice. In the fall 2009 Focus newsletter of the Center for Health Care Policy and Ethics at Creighton University in Nebraska, Caroline Gaudet and Trisha Cochran said, “Given the limited length of stay and reimbursement for in- and outpatient rehabilitation services, clinicians have a sense of urgency to get their patients as functional and independent as possible as quickly as possible, often having to teach compensatory behaviors instead of fostering neural recovery.”
Counselors need to be sensitive to ethical and societal questions that might affect their clients who have various types of illnesses. Sociological changes such as health care reform can usher in much hope and, simultaneously, significant concern. Such opposing outcomes probably depend on what people expect medical or mental health care to do for them. As another example, professionals who work with psychiatric clients know that any change in their environment might cause these individuals anxiety and perhaps trigger a total relapse of their conditions. Changes in the U.S. health care system might become a direct or indirect trigger for such challenges.
Other bioethical issues
Beyond the neurological areas, there are other bioethical issues that may require mental health attention. For example, should medical providers assist in ending the life of terminally ill patients? With biotechnological advances and societal changes, the bioethical, psychological and medical issues of death and dying have become more complicated than they once were for persons with terminal illness and their families. Recommending that patients have feeding tubes implanted or making decisions concerning who should receive an organ transplant presents both bioethical and mental health implications.
These represent only a couple of examples of the bioethical issues that health care clinicians face daily. We should ask ourselves whether counseling and therapy might help to improve the prevalence of healthy and ethical outcomes in these scenarios. Counselors must bear in mind that there are often competing values between the patient, the health care team, the family and society in many such situations.
Counseling initiatives and strategies
Organizations such as the American Counseling Association have the opportunity to promote clinical practice, research, legislative advocacy and education in this specialized area. People vying for guardianship in court (for example, in the Schiavo case) should be psychologically screened so the party that is most mentally fit for the task can be identified.
It might be beneficial for ACA to partner with other organizations such as the American Society for Bioethics and Humanities; the American Society of Law, Medicine & Ethics; the Neuroethics Society; and the National Bioethics Advisory Commission to create initiatives that would foster integration between our respective fields. We could partner with these organizations to devise new protocols for cooperation between bio/neuroethicists and counselors. More training opportunities on bioethical issues for the counseling profession would also be beneficial. Perhaps some counselors might want to earn another degree in bio/neuroethics and develop a subspecialty in clinical or research areas.
Health care workers who come into contact with these types of cases supposedly receive ongoing bio/neuroethics training. This does not mean, however, that such staff could not use additional emotional support as well. This could involve values clarification classes as well as individual or group psychotherapy. A mental health clinician, independent of the case being considered, could be included in bio/neuroethical discussions to identify and assist with the psychological issues that may arise.
Offering a grief model might be helpful. Part of the difficulty might be that each person is at a different place along the grief journey. The father may have accepted the reality, while the mother might be in denial and a nurse could be bargaining. Counselors have to help identify and reconcile the psychosocial variables in any health care dilemma.
The patients who can participate in the decision-making process should be in counseling/therapy to help them cope with what is happening to them. The counselor might have to assist these patients in reshaping their expectations to bring about a resolution. Bear in mind, “incompetence,” if imposed, is a legal term — not a medical or psychiatric diagnosis. Even though the legal profession pronounces some people to be incompetent, it doesn’t necessarily mean the person cannot think for himself or herself. However, he or she may need added support in making decisions. The person should not be dehumanized by the label of incompetence or by the bio/neuroethical process, and counselors can play a role in ensuring that does not occur.
It will be important in the coming years for counselors to monitor changes in the U.S health care system, not only as these changes pertain to the counseling profession but to medical professions as well. Starting in 2014, when health care reform goes into full effect, some clients might experience confusion and distress. Counselors will be needed to help individuals navigate both expected and unforeseen challenges. If systematic difficulties become acute or long term — necessitating rationing of services, for example — this could lead not only to a medical crisis but to a mental health crisis as well. If so, strategies and changes to the counseling profession might need to be developed.
In the beginning of the bio/neuroethics process, the individuals involved should be made aware that they have biases that will come out. People should be encouraged to pinpoint their own motives and the meaning of the actions they take. For those who want to hide behind the objective professional cloak, they should be reminded of their humanity and that their motives will ultimately escape from the mental iron curtain. Finally, the legal profession might need to be educated about the influence of psychological factors in these dilemmas. The Schiavo case illustrates what can happen when such psychic forces are overlooked.
Conclusion
I’m writing this article not as a bio/neuroethical expert but rather as a casual observer of the process and a newcomer to the counseling profession. I am also a quadriplegic due to cerebral palsy from birth, so I can empathize with people with disabilities who might feel that others are in control of the quality of their lives. It is frustrating to know others are in charge of making choices on one’s behalf, even though some patients/clients might not be as aware of this due to their inability to comprehend. Counselors can play a significant role in assisting patients/clients, families and professionals to cope with bio/neuroethical issues. I think it would be worth the effort.
Kevin Wreghitt is a mental health clinician and a Massachusetts mental health counselor licensure candidate at Coastal Connections Inc., an adult developmental disability day program. He has an interest in counseling clients with neurological injuries. Contact him at kevinwreghitt@verizon.net.
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