Executive Summary

Hospice and palliative care nurses reported inadequate communication, provision of non-beneficial care, and discontinuation of life-prolonging therapies as some of the factors contributing to ethical issues, according to a recent survey. Some recommended the following strategies:

• Use role-playing exercises to teach nurses to voice concerns on end-of-life care.

• Include nursing in patient care discussions.

• Mandate nursing presence on bioethics committees.

 

The Hospice and Palliative Nurses Association (HPNA) conducted a survey of 129 of its members to identify ethical dilemmas encountered by hospice and palliative nurses.1 Nurses reported these issues related to ethical dilemmas: inadequate communication, provision of non-beneficial care, patient autonomy usurped or threatened, issues with symptom management and the use of opioids, issues related to decision-making, and issues related to discontinuation of life-prolonging therapies. “The findings were not surprising,” says Sally Welsh, MSN, RN, NEA-BC, HPNA’s CEO, pointing to the following factors:

• There are multiple disciplines involved in the patient’s care.

• Advanced technology is often used that can prolong life or prolong the dying process.

• There is often inadequate training around goal-of-care discussions.

• The patient’s care is often transitioning from life-prolonging to a focus on promoting comfort and quality of life.

• There is inadequate institutional support in many settings for nurses.

“The inability to solve or at least address ethical issues can have a very negative impact on patients and families, as well as nurses, physicians, and other members of the team,” says Welsh.

Approximately two-thirds of the nurses used educational and other clinical resources to resolve ethical issues, according to the survey. These included formal ethics consultations, involvement of the palliative/hospice team, consulting with a health care professional or clergy, and team meetings.1

One-third of nurses reported that institutional or personal barriers prevented the ethical dilemma from being resolved. “The quality and type of resources available to nurses and other staff varied,” notes Jooyoung Cheon, MSN, RN, the study’s lead author. The nurses reported that the following factors were related with an inability to resolve ethical issues:

• the family’s insistence on non-beneficial interventions;

• concerns about drug-seeking behaviors;

• family avoidance of family meetings and other communication issues;

• disagreements among team members;

• lack of a palliative care consult or inability of a nurse to request a consult;

• staff inexperienced in end-of-life issues;

• too little time to help the family process what was happening;

• the family’s difficulty in accepting the inevitability of death;

• the family’s financial problems;

• cases with pediatric patients.

Welsh recommends these approaches to assist nurses in dealing with ethical issues:

• Providing nurses with education on bioethical issues and resolution, including models for evaluating ethical issues. “Discussion of ethical issues can be included in all clinical case presentations,” says Welsh.

• Discussing ethical issues during clinical case presentations.

• Ensuring nurses have access to clinical and administrative policies and procedures, and resources such as ethics committees or consultations.

“The availability of a formal process or method to review bioethical issues is very beneficial in assisting nurses to work through bioethical issues,” says Welsh.

• Including nurses as members of ethics committees and ethics consult teams.

• Giving nurses the autonomy to request ethics consults within their organizations. “The availability of a formal process or method to review bioethical issues is very beneficial in assisting nurses to work through bioethical issues,” says Welsh.

Nurses are often not included in discussions about end-of-life care because they are often not seen as full partners in patient care, says Margaret Quinn Rosenzweig, PhD, FNP-BC, AOCNP, FAAN, associate professor at University of Pittsburgh’s School of Medicine. “Nurses often undervalue their contribution to health care,” she adds. Therefore, nurses don’t always speak up regarding things they have observed during their patient care and interactions with the patient and family, she says.

“Including nursing really opens the discussion of end-of-life care to a more holistic approach,” says Rosenzweig. “End-of-life care and decision-making should not be based solely on a medical/disease model.” She recommends that bioethicists utilize these approaches:

• Provide education to nurses regarding end-of-life care and the role of palliative care in life-ending illness. “Role-play or model ways in which nurses could add to the conversation regarding end-of-life care through case vignettes,” says Rosenzweig. “This allows nursing to practice adding their voice during family meetings or discussions.”

• Make an effort to include nursing in patient care discussions. “If bioethicists who are involved in the clinical care of patients embrace nursing, the contribution of nursing will be more highly valued,” says Rosenzweig.

• Mandate nursing presence on bioethics committees, family meetings regarding care planning, and cases involving surrogacy decisions. “In this manner, nursing will be automatically included in vital discussions,” says Rosenzweig. “Nurses will contribute an important viewpoint in end-of-life care.”

Nurses uninformed about plan of care

Some physicians believe nurses need to know only what’s necessary to provide bedside care. This means nurses aren’t always informed of the plan of care.

“Nurses not infrequently will request an ethics consultation because they are concerned when it appears an aggressive intervention is being continued, seemingly with no clear goals or end point,” says Lucia D. Wocial, RN, PhD, nurse ethicist and program leader at Indiana University Health’s Charles Warren Fairbanks Center for Medical Ethics in Indianapolis.

This arises, for example, if a patient’s surrogate makes a comment to the nurse that suggests they are unaware of the risks or burdens of ongoing aggressive treatment. “On the face of it, it may look like the patient’s surrogate has not received all the information necessary to make an informed choice, and that doesn’t seem right,” says Wocial.

When physicians clearly explain the plan and their efforts to inform the patient’s surrogate, whether verbally or in their notes, nurses can support the plan. “They often help to reinforce the information shared by the physician,” says Wocial.

Address moral distress

Both nurses and physicians experience genuine distress over not being able to restore a patient to his or her previous level of functioning or a health status that the patient would find valuable, says Wocial. “Many don’t know how to communicate that to a family member who is in shock, grieving, and angry,” she says. “These are hard conversations. Nobody looks forward to them.”

More than 80% of clinicians interviewed by Wocial for a quality monitoring evaluation of ethics consults reported that they experienced moral distress when caring for a patient who was the focus of the ethics consultation request. Many reported that the ethics consult gave them confidence in the overall plan of care, she says. One respondent stated, “If I hadn’t participated in the consult, I still would think what we did was wrong.”

Physicians don’t always verbally convey to nurses how the goals of care conversation went, she says. Such information is often absent from the chart. “Often, physicians don’t have time to document details of the discussion,” says Wocial. Sparse documentation such as, “Spoke with the family about prognosis” leaves others, including nurses, in the dark about the goals of care.

“My question is always, ‘And? How did it go?’” says Wocial. Ideally, documentation would include how the patient responded, what other caregivers need to reinforce, and what the next meeting or decision point is, she says.

“Everybody needs to know what others are doing, in order to work together to achieve the patient’s goals,” says Wocial.

Reference

  1. Cheon J, Coyle N, Wiegand D, et al. Ethical issues experienced by hospice and palliative nurses. Journal of Hospice and Palliative Nursing. 2015; 17(1):7-13.

SOURCES

  • Jooyoung Cheon, MSN, RN, School of Nursing, University of Maryland, Baltimore. Phone: (443) 831-6337. Email: jooyoung.cheon@gmail.com.
  • Margaret Quinn Rosenzweig, PhD, FNP-BC, AOCNP, FAAN, Associate Professor, School of Medicine, University of Pittsburgh. Phone: (412) 383-8839. Fax: (412) 383-7227. Email: mros@pitt.edu.
  • Sally Welsh, MSN, RN, NEA-BC, Chief Executive Officer, Hospice and Palliative Nurses Association, Pittsburgh, PA. Phone: (412) 787-9301. Fax: (412) 787-9305. Email: sallyw@hpna.org.
  • Lucia D. Wocial, PhD, RN, Nurse Ethicist/Program Leader, Charles Warren Fairbanks Center for Medical Ethics, Indiana University Health, Indianapolis. Phone: (317) 962-2161. Fax: (317) 962-9262. Email: lwocial@iuhealth.org.