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It’s not uncommon for nursing staff to report moral distress after administering palliative sedation to a patient who dies shortly afterward.
“They quite naturally feel that they may be either directly responsible for, or complicit in, the death of a patient. Some may even believe they have committed murder,” says Philip M. Rosoff, MD, MA, professor of pediatrics and medicine at Duke University’s Trent Center for Bioethics, Humanities & History of Medicine in Durham, NC.
After administering what they interpret as lethal doses, some nurses feel they have, in effect, killed the patient. “While this is clearly mistaken, these ways of thinking are not unusual — but thankfully, not when dying patients are under the care of those skilled in this kind of practice,” says Rosoff.
For terminal patients whose pain is unremitting and unable to be diminished, extremely large dosages of combinations of drugs may be needed to achieve the desired effect. “As with many agents of the classes used for this purpose, sedation and associated respiratory depression and hypotension can commonly be observed,” says Rosoff. “These are both expected and unavoidable.” These associated effects of the drugs can lead to death. “The important point is that the aim of treatment is relief of pain and suffering, and not the cessation of breathing or death,” says Rosoff.
Anticipating ethical concerns surrounding issues such as palliative sedation can help to bring the ethical issues into the clinical dialogue, says Cynda H. Rushton, PhD, RN, FAAN, Anne and George Bunting Professor of Clinical Ethics at Johns Hopkins University’s Berman Institute of Bioethics and School of Nursing in Baltimore.
“Ethicists can be proactive advocates for raising the issues before others have done so, so that all voices in the clinical team, especially those who will be delivering the treatments, are heard and respected,” says Rushton.
It is natural for nurses to take pause if a terminally ill patient dies shortly after administering a medication that is intended to provide relief of suffering, according to Lucia D. Wocial, PhD, RN, a nurse ethicist at Fairbanks Center for Medical Ethics at Indiana University Health in Indianapolis.
However, says Wocial, “many people describe uncomfortable feelings as moral distress, and that is a misuse of the term.” A nurse may want reassurance that the correct dose was given, or that the medication was administered correctly.
“The key here is, what was the intent of the medication?” says Wocial. “The goal is symptom relief. It should be titrated to the minimum level of reduction of consciousness necessary to render symptoms tolerable.”
The patient may lose the ability to communicate their “tolerance” of the symptoms, however. Management of the titration then becomes the responsibility of the nurse. “No matter how much education and training the nurse may have, there is judgment involved,” says Wocial. “The nurse must be ever mindful of the intent: to relieve suffering.”
Palliative sedation is meant to be used to control intractable symptoms in dying patients. “Because nurses are most often responsible for titrating the medication, it is essential that they be part of discussions that lead to the decision to provide palliative sedation for a patient,” says Wocial.
It is important for ethicists to understand the nature of the moral distress caregivers are experiencing, says Rushton. Ethical issues could include concerns that such acts will hasten death, whether there is an intention to end life, adequacy of the informed consent process, or sufficiency of palliative interventions aimed at relieving suffering.
“Ethicists can offer a disciplined approach to understanding and reasoning about the ethical issues associated with palliative sedation,” says Rushton. Clinicians may have misconceptions about the process, decision-making, or ethical justification surrounding a particular case. “Helping clinicians to understand the ethical arguments, and to offer guidance, including the exercise of conscientious objection when such cases violate clinician integrity, are important contributions,” says Rushton.
Ethicists can participate in developing hospital policies on palliative sedation. “Ethicists can be instrumental in clarifying the issues and contributing to the design of processes to assure ethical practice,” says Rushton.
If palliative sedation is being considered, the case can be brought to the ethics committee for consideration. “Here, in a ‘safe space,’ goals of care can be discussed by the medical team and family,” says Margaret R. McLean, PhD, associate director of Markkula Center for Applied Ethics at Santa Clara (CA) University. “Truly informed consent can be pursued.” Concerns regarding palliative sedation can be aired, and alternatives proposed.
“The ethics committee can also sponsor in-service education about palliative sedation, including the importance of intent in differentiating palliative sedation from aid-in-dying,” says McLean.
If ethicists detect moral distress in caregivers, the following strategies can be utilized, says Sally Welsh, MSN, RN, NEA-BC, chief executive officer of the Pittsburgh-based Hospice and Palliative Nurses Association:
“Caregivers who have moral distress regarding patient care situations should have the ability to transfer care to another provider,” adds Welsh. “It is essential that both patient rights and caregiver values be respected.”
Ethicists can educate clinicians and the patient and family that the intention of all concerned is the relief of suffering, and that death is not the primary goal. “We can argue all we want that palliative sedation, when done well, is good both for the patient and her loved ones, but sometimes to no avail,” says Rosoff.
Nevertheless, an ethics consult can accomplish two things. “It might help relieve some of the moral distress of those involved, and avoid delays in delivering help to a patient and family in agony,” says Rosoff.
Ethicists can take the opportunity to clarify any miscommunications about the patient’s end-of-life wishes, and the terminal nature of the disease. “Unrelieved pain and suffering, when it is within our power to alleviate it, seems to be one of the highest moral duties of the healing professions,” says Rosoff. “It behooves its practitioners to embrace therapies that can accomplish this effectively.”