Bioethical issues and conflicts occur frequently in skilled nursing centers. Situations involving disagreements among residents and their family members about preferred intensity of medical treatment are common.
Increasingly, residents without decisional capacity who have no surrogate to provide guidance about treatment decisions (patients who are “unrepresented” or “unbefriended”) are residing in centers for long term care.
Issues around availability of resources, such as costly medications or treatments and insurance coverage, can present ethical dilemmas.
Sometimes staff members experience moral distress with treatment decisions or resident activities, such as a resident’s choice to stop eating and drinking (also called voluntary stopping of eating and drinking, or VSED), or sexual activity involving a resident with cognitive impairment.
Resident refusals of recommended treatment, such as refusing turning and repositioning or nonadherence to a therapeutic diet or thickened liquids, bring up specific risk versus benefit scenarios.
Other types of interventions, including the use of restraints, alarms, and psychotropic medications, may also be ethically fraught.
When Conflicts Arise
The four most commonly invoked overarching bioethical principles are autonomy, beneficence, nonmaleficence, and justice. Often, ethical controversies arise when there is a conflict between one or more of these principles. Autonomy is a person’s right to self-determination. Beneficence is the mandate for health care providers to do good for their patients. Nonmaleficence is the well-known “do no harm” directive. And justice embodies fairness, impartiality, and equality in the treatment provided to patients.
A common ethical conflict occurs when patients want to do something that may prove harmful to them, such as refusing to take a medication considered medically necessary.
Here, autonomy (the patient’s right to refuse) conflicts with beneficence (the obligation to do good by administering the needed medication). There are innumerable variations, combinations, and permutations of such ethical conflicts, and they occur in everyday clinical practice in nursing centers.
The Value of Bioethics Committees
Bioethics committees are a regular and necessary fixture in acute care hospitals, where similar issues and more acute considerations around intensive care, organ donation, emergency surgery, neonatal matters, brain death, and other high-level ethical conflicts occur.
These committees usually include representation from multiple professional designations and roles, including medicine, nursing, social work, chaplaincy, and community patient advocacy; they also require one or more members with formal bioethics training.
In the skilled nursing center arena, bioethics committees are often not as robust, if they exist at all. Historically, the facility medical director has taken the lead in convening ethics committee meetings and addressing bioethical conflicts in the care setting.
Nursing centers with active and visible bioethics committees, although they are not the norm, provide a valuable service to residents, staff, administration, and practitioners.
The bioethics committee can provide a safe space for staff to express concerns and be heard, and it can indirectly help protect the nursing center from liability by promoting conflict resolution and open, proactive discussion of difficult clinical situations with the interdisciplinary team, resident, and family.
Ethics committees can help create realistic expectations and facilitate clear, respectful communication among practitioners, staff, residents, and families.
Training Whenever Possible
AMDA—The Society for Post-Acute and Long-Term Care Medicine ascribes one of the tasks of the medical director thusly: “The medical director participates in the activities of the institutional biomedical ethics committee and identifies community resources that can assist in resolving ethical and legal issues.” For more information on the Certified Medical Director Core Curriculum, visit: https://paltc.org/amda-white-papers-and-resolution-position-statements/nursing-home-medical-director-leader-manager. Additional resources include an AMDA White Paper: https://bit.ly/2NDwHAc and a toolkit on starting and maintaining an ethics committee: https://bit.ly/2NHcgCu.
In addition to the educational content through AMDA, it is advisable for medical directors to obtain additional bioethics training whenever possible. Local hospitals can be a good additional source for a nursing center’s bioethics committee, as can the Ombudsman’s office and university ethics programs.
Ideally, ethics committees should meet not only on an episodic, acute case basis when a need arises, but also on a routine schedule, at which time an illustrative case can be discussed in the context of general bioethical principles, or other types of education can be offered.
Deciding for Residents
One of the most pressing issues in nursing centers is that of decision making for residents who are incapacitated and unrepresented. Based on AMDA members’ general observation that, conservatively, between 0.5 percent and 2 percent of nursing center residents meet the criteria of incapacitated and unrepresented, it is estimated that there are tens of thousands of such residents nationwide, and their ranks are growing.
Normally when determining a course of medical treatment for patients without decisional capacity, the first ethical directive is to go by their known wishes. Unfortunately, that is not always possible to determine.
Despite more of a focus recently on advance care planning, it is unfortunate that many practitioners (and patients) do not make it a priority. When there is no documentation of known wishes, the next step for a bioethicist or clinician is to consider substituted judgment. This is when a person close to the patient (often but not always a spouse or adult child) informs the health care team of what the patient would have wanted, based on previous conversations, life experiences, and other individual knowledge.
Acting in the Best Interest
But sometimes, there is nobody who has had a conversation who can supply such substituted judgment. In those instances, the standard becomes a “best interest” standard. It’s easier to apply this standard when something is known about the person’s past life, values, and beliefs, but sometimes there is no such guidance. These are the situations where there may be disagreements among the team as to what constitutes a person’s best interest—some people believe that relief of suffering, especially when there is a terminal condition, should be the paramount goal; others believe that life should be prolonged by all reasonable medical means.
However, most people would agree that at some point in a trajectory of serious illness, there comes a point where the burdens of aggressive treatment outweigh the benefits of prolonging life.
A Source for Guidance
These issues are thorny when it comes to unrepresented patients with dementia (which itself is ultimately a terminal condition), and there is no clear answer that applies to every situation—although it is widely accepted that feeding tubes should not be placed in patients with advanced dementia, with good evidence to back it up.
It is important to note that different states have different requirements and standards for decision making for these patients. But a bioethics committee can go a long way toward providing guidance, comfort, and open discourse in these difficult clinical situations, and can avoid the need for burdensome formal court proceedings.
Bioethics committees, with active participation and leadership from an engaged medical director, can be a godsend for nursing centers. They do not require a great deal of resources, and the time involved for the medical director can be part of the expected hours under the contractual arrangement and reported hours under the nursing center’s payroll-based journaling.
The materials available from AMDA listed above should be helpful in creating and sustaining an ethics committee.
Karl Steinberg, MD, CMD, HMDC, is a long term care geriatrician in Ocean-side, Calif. He is chief medical officer for Mariner Health Central and medical director of Life Care Center of Vista and Carlsbad by the Sea Care Center. He is chair of AMDA’s Public Policy Committee and editor-in-chief of its monthly periodical, Caring for the Ages.