Results
Question 1: "Please Describe the Most Recent Ethical Dilemma That You Have Encountered". There were 128 responses to this question yielding the following 6 themes: inadequate communication, provision of nonbeneficial care, patient autonomy usurped/threatened, issues with symptom management and the use of opioids, issues with decision making, and discontinuing life-prolonging therapies at the EOL. Table 2 summarizes the themes and subthemes with examples of supporting quotes and comments.
Nurses described ethical issues related to inadequate communication that occurred when patients and/or surrogates were given conflicting information or when goals of care were not addressed. As 1 nurse described, "The provider offers unrealistic goals at the end of life, continues to treat, often saying it is the family's wishes (when the family does not have all the information to help make a realistic choice)." In addition, nurses identified situations where patients and surrogates were given conflicting information especially when multiple providers were involved in the patient's care, thus further complicating their ability to make decisions in the best interest of the patient. One nurse described a situation where "After a discharge had been developed and approved by the primary care provider and patient/family, a specialist walked into the room and told the patient that he preferred another plan and offered dialysis (which was inappropriate in an 89-year-old with multisystem failure and dementia)." The nurse was then placed in the position of having to advise the patient and family on how best to proceed.
Several examples were shared by nurses of care given to patients that they perceived as nonbeneficial or futile. One nurse described a "family requesting that 'everything is done' despite no clinical improvement with treatments." The nurses were the ones who often asked, "What are we doing here?" Some nurses struggled with determining what care is most appropriate for the oldest of the old. As 1 nurse described, "Full code status on a 98-year-old…."Another nurse described, "Continuation of futile care in a neonate who had multiorgan failure and no chance of intact survival because no one would stop escalating care."
Nurses also experienced ethical issues when a patient's autonomy was usurped or threatened. A number of concerns were shared related to families and providers not supporting patient wishes. In fact, for many, treatments were provided that were exactly the opposite of what patients stated that they wanted. Some of the decisions about these treatments were made by families, and some of these decisions were made by staff members. One nurse described, "Physicians abdicate to family members rather than advocating for the patient." Other ethical dilemmas encountered by nurses involved family members not wanting the patient to know his/her diagnosis. As 1 hospice nurse described, "We have had several families who don't want the patient to know the diagnosis, the prognosis, or that they are in hospice." The family of another patient did not want the patient to be told that he was dying and did not feel that the patient should be included in any aspect of the decision-making process. Nurses encountered conflicts between patient and family goals for direction of care. Situations were described where family wishes overruled those of the patient despite advance directives stating what the patient wanted. An example was as follows: "The health care directive names an agent and also gives clear instructions about treatment preferences, but the agent is requesting treatments in conflict with the written instructions."
Nurses also described problems that they experienced as they tried to manage distressing symptoms. Most of the ethical dilemmas involved the use of opioids. Some of the examples shared were related to physicians, and some were related to families. One example provided was a nurse who was unable to convince a physician to prescribe medication for a patient who was in pain. Another example occurred when a family member did not want pain medication to be given to a patient because of a fear of adverse effects; this limited the nurse's ability to manage the patient's symptoms. One common struggle described by the nurses was trying to limit the amount of pain medication to promote comfort while still achieving some degree of patient consciousness. Palliative sedation was also an area of concern for some-with a tension expressed between controlling symptoms and hastening death: "A hospice patient who had to be kept overly sedated in order for him to breathe but by overly sedating him he wasn't able to eat. Ultimately, I feel we hastened his death, but had he not been sedated, he would not have been comfortable."
Nurses also described ethical dilemmas related to decision making. Some dilemmas were focused on challenges faced when trying to determine if patients had capacity to make their own decisions, and others were related to issues with surrogate decision making: "The patient had end-stage dementia. He had no health care surrogate or involved family members. The patient lacked decisional capacity." Other dilemmas focused on determining who the right person was to make decisions for patients who did not have decision-making capacity. It was not always clear who should be making decisions and what to do if there was family conflict.
Nurses encountered ethical dilemmas that involved discontinuing life-prolonging therapies at the EOL. Most of the examples were concerns that nurses had with discomfort with stopping nutrition and hydration. One nurse described a concern regarding withdrawal or shutting off a pacemaker. The nurse described, "Deactivation of a pacemaker in a patient who could not express her wishes, but her son, her durable power of attorney for health care, felt that she would view this as an artificial form of life support."
In summary, nurses' comments reflected an understanding that multiple issues were often embedded in 1 ethical dilemma, a process was involved in sorting the issues out, and that an understanding of the context was essential. Two-thirds of nurses reported that they were able to resolve the dilemma by using available resources and techniques including ethics consultation, family meetings, supporting the family, supporting patient autonomy, palliative medicine involvement, clarifying goals of care, involving the family in care of the patient, staff and family education about ethical principles, and honoring the rights of the patient to have their wishes honored. In some cases, the issue was resolved by the patient's death.
The most recent ethical dilemmas were not resolved for one-third of the nurses. Factors contributing to nonresolution included a child was involved, concern about drug-seeking behavior, the family was insistent that nonbeneficial interventions continue, family avoidance of family meetings and other communication, team not on the same page, palliative care not consulted, financial issues, staff inexperienced in EOL issues, time restraints to help the family process what was happening, and difficulty in accepting the inevitability of death.
The frequency of nurses encountering ethical dilemmas in this survey varied. Eighteen nurses (22.8%) said this was the first time, 2 (2.5%) said daily, 24 (30.4%) said weekly, and 35 (44.3%) said monthly. The practice setting of these nurses or their years of experience is not known.
Question 2: "What Resources are Available to you to Help Resolve Ethical Dilemmas?". Most nurses reported that they used 1 or 2 resources to resolve the ethical dilemmas. Figure 1 summarizes the resources used by the nurses when faced with an ethical dilemma. The resources they mentioned most frequently were ethics committee and consultation services, palliative or hospice team, team meetings and discussions, and other health professionals and involvement of the clergy. Educational resources and research were less frequently mentioned. Although most nurses described the ethics committee and consultation services as helpful and sometimes "working in collaboration" with the hospice or palliative care teams, a small minority were dissatisfied with the ethics committee and felt their role was limited because of "insufficient guidance and inactivity." Many nurses mentioned "team meetings and discussions" were a good way of resolving ethical dilemmas. In the team meetings, nurses were able to get help to find a solution from coworkers such as other nurses, nursing faculty, physicians, social workers, and the clergy. Some respondents, however, identified that there was a lack of resources available to help nurses to address ethical dilemmas.
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Figure 1.
Resources used by nurses when faced with an ethical dilemma.
Question 3: "How Can HPNA be of Support to You in Resolving Ethical Dilemmas?". The participants had several suggestions for how HPNA could be of support in resolving ethical dilemmas. Suggestions included providing educational opportunities and training; advice and consultation; general information and education resources; case studies and discussion; network or group work (eg, SIG, Journal Club); guidelines, policies, and philosophy; and a forum for sharing expert opinions. Promoting research and publishing evidence-based research were also mentioned.