I know he would not want to live this way.
They’re giving up on her because she’s old.
Look, he’s going to die anyway; can’t we just speed that up?
I believe God can do a miracle if we just wait.
As the capabilities of medicine, surgery, drugs and devices grow, so do questions about the legal, moral and institutional obligations on their use. How much is enough; how much is too much? Does life need to be extended at any cost — not only financial, but also the realities of possible suffering that accompany the attempts? Are we bound to use every means at our disposal, even the experimental or the doubtful? And who should decide?
Particularly in the later 1960s through the 1980s, many difficult situations ended up in courts of law at every level, including state and federal supreme courts. Among the many consequences of this, I highlight two: First, courts repeatedly urged codifying some means of expressing health care wishes in advance so that the preferences of a patient lacking capacity could be known and addressed as if the patient was speaking in the moment; soon every state had some law on “advance directives.” Second, courts recognized that they were a poor setting for adequately handling these highly individual, time-sensitive and medically nuanced situations, and so they encouraged the establishment of hospital ethics committees.
The phrases at the beginning of this column — and many more — have been part of ethics consultations I have shared in for about 25 years. I have been deeply moved by the sincerity, professionalism, compassion, anxiety, honesty and complexity I have observed in these cases. Illness, accident, tragic events, unforeseeable outcomes and chronic suffering bring testing to emotional strength, personal convictions, family bonds, caregivers’ skills and resiliency, and moral boundaries. Human vulnerability can show people at their worst, and at their best.
Ethics committees are an interdisciplinary group of physicians, nurses, therapists, attorneys, administrators, community members, chaplains and specialists. Each brings expertise, experience and objective yet compassionate concern to this common work. The committee has three main functions: education, policy review and case consultation.
Education is essential for the rapidly changing world of health care. Not only are there ever new techniques, drugs, devices and interventions, but the ways in which they are delivered and paid for are evolving. Further, social norms, economics, political and regulatory pressures, inequities in access and outcomes, and workforce challenges always need to be considered. There is also attention to development in ethical thinking and, for Catholic organizations, to Church teaching on particular matters like feeding tubes and partnerships with organizations that do not share our faith. Education is offered not only to committee members but also to the larger medical community and the community in general. Because health care involves ethics by its very nature, policy review is appropriate to attend to the ethical implications of both clinical and organizational norms, standards and procedures. This review assumes legal compliance, pursuing excellence in outcomes and patient experience, and being good stewards of resources, but goes beyond these necessary factors to ask not only, “Is it legal?” or “Is it safe?” or “Is it effective?” but also questions like, “Is it right?” “Is it fair?” “Does it honor our moral commitments?”
Case consultation is a resource available to patients, families and providers when there is some conflict about the proper path to take in an individual case. In accord with the principle of subsidiarity, the preference is to address conflicts at the most immediate level; and often good communication and clarifying the clinical realities, options, and likely outcomes for each leads to a good resolution. When conflict persists, however, an ethics consult can help resolve the tensions.
In a consult, the clinical facts are reviewed along with relevant patient history. The patient (if available) and family members, providers, legal counsel and other committee members all have an opportunity (in person or remotely) to hear one another, ask questions and clarify the conflict and the options available. The committee is always consultative only; it does not make decisions that bind patients, family or providers, but will strive to reach consensus on recommendations based on what has been shared, always with the good of the patient preeminent.
The committee shares with those participating the principles that will guide deliberation. These most commonly include autonomy (honoring patient wishes as they are clearly known as long as they do not conflict with moral teaching or the organization’s ethical commitments); non-maleficence (avoiding causing or aggravating any harm to the patient); beneficence (acting to do whatever is for the benefit and in the best interests of the patient); and justice (that the recommendation be free from bias or irrelevant non-clinical factors; that we do for this patient as we would for any other in like circumstances).
Additionally, transparency, respect, honesty and confidentiality are expected by all. For Catholic health care, the Ethical and Religious Directives from the U.S. bishops provide the moral context that informs policies and specific decisions. Each case is addressed individually, and the recommendation is included in the medical record. On rare occasions, when no resolution can be reached within the bounds of the ERD, a transfer to another facility may be recommended.
The complexity of contemporary health care and the pluralism of our society create situations where conflicts are likely. Ethics committees work to bring clarity to the conflict and ensure that the focus remains on the good for each patient’s whole person, body, mind and spirit.
Father Tom Knoblach is pastor of Sacred Heart in Sauk Rapids and Annunciation in Mayhew Lake. He also serves as consultant for health care ethics for the Diocese of St. Cloud.