1. Pierce, Susan F. RN, PhD

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Making healthcare decisions for a terminally ill patient or one in a persistent vegetative state is complicated. When the decision to terminate or limit treatment will result in patient death, the tragic nature of that decision creates even more of a burden. Although healthcare providers have become accustomed to honoring living wills and terminating care that appears to be of questionable value, an increasingly problematic situation arises: What do you do when the healthcare team is ready to stop or limit life-sustaining treatment, but the family isn't? It's the ethical duty of the nurse manager to create the climate and mechanisms for the collaborative communication needed to resolve these conflicts.


Decisions about continuing or limiting life-sustaining treatments revolve around a basic recognition of the right of competent adult patients to control decisions about their healthcare. This includes both the right to give fully informed consent for care and to refuse any treatment. As nurse manager, you have a critical role in determining the appropriateness of any treatment based on the likelihood of benefit and the burden the treatment places on the patient. Without a climate that recognizes an equal partnership between the patient and healthcare provider in decision making, conflicts about sustaining life and terminating treatments will inevitably arise.


Avoid conflict

The first critical step in avoiding conflict is to recognize that whenever a patient is seriously ill or faces a major procedure, it's important to assess what the patient's preferences and goals for treatment are, and know who the patient would want to make decisions should he or she become unable to make them. Therefore, you should institute a mechanism to ensure that all nurses communicate with the patient to establish this information before incoherency occurs.


When requesting specific information from patients, it's sometimes difficult for them to state all of their goals. However, they can generally respond to the simple question, "If you were unable to decide what treatments you want, who would you want to make that decision for you?" The necessary follow-up when patients name their daughter, husband, or a trusted friend is to ask if they told that person these wishes. Documenting patients answers to these questions in the medical record gives their requests both legal and ethical weight. Thus, even in the absence of the formal advance directive, the law in a number of states allows a patient's wishes to be known and honored.


Collaborative decision making

The time for collaborative decision making occurs when a patient's likelihood of recovery comes into question and he or she becomes dependent on artificial means to sustain life. Because the decision to continue or withdraw any treatment depends on the balancing of patient benefits and burdens, rarely is any treatment totally "futile." However, the burden of the treatment may well outweigh any benefit, and that's a concept patients and families can generally understand. Facilitating timely, open, and supportive discussions between family and healthcare providers regarding these options is a critical role for the nurse manager. Reminding decision makers to base their choice on their knowledge of what the patient wanted, and not their personal wishes, often eases their burden.


Ensuring that such dialogue occurs and that the nurse's data and the nurse's voice are heard in the discussion is also your responsibility as nurse manager. Such compassionate communication and collaborative decision making can be successful in resolving different viewpoints about ending or limiting life-sustaining treatments. When the decision makers don't wish to limit life-sustaining treatments, you must take the time to communicate effectively and compassionately the burden on the patient of continuing those treatments so they can reconcile this with what the patient would want.


Support mechanisms

In instances where dialogue between families and providers doesn't bring solutions, consider accessing your facility's ethics committee, legal department, and risk-management services, as well as social work, pastoral care, and other support for the family. Maintain a working knowledge of how these consultants can be reached, and through relationship-building, know enough about their knowledge and skills to use the different resources appropriately.


Because the patient or the patient's authorized decision makers retain decision-making authority and occasionally fail to resolve conflicts, explore the possibility of patient transfer to another attending physician or to a different healthcare facility. Rarely do situations get to this level, but if they do, it's important to remember that unilateral decisions not to continue to treat a patient over objections from the patient's authorized decision maker(s) are ethically and legally unacceptable.


Needless to say, decisions to terminate or limit life-sustaining treatments aren't easy, but can be collaboratively accomplished. By facilitating good communication and staying true to the final wishes of patients and chosen decision makers, this painful process can be slightly eased for both you and the patient's family.