What are the legal and ethical issues involved in end of life care

Nurses are faced with ethical dilemmas every day: situations where no “right” answer is clear. This is especially common during end-of-life (EOL) care, where patients and caregivers may experience charged emotions, grief, and loss. Oncology nurses are often called on to act as mediators through difficult moments, advocating for their patients while connecting caregivers with the resources that will help them during a challenging time.

During EOL care, ethical dilemmas may arise from situations such as communication breakdowns, patient autonomy being compromised, ineffective symptom management, non-beneficial care, and shared decision making. Oncology nurses can navigate ethical dilemmas by offering the best possible care while allowing patients, family members, and caregivers the opportunities to experience EOL with dignity.

Consulting the Ethics Committee

It’s important to know when to consult the ethics committee at your institution. Consider reaching out in the following situations.

• Family members are unsure of when to start or conclude end-of-life treatments.
• Cultural or religious beliefs conflict with recommended care.
• You or your patients are distressed over decisions made. 
• Providers or families are uncertain about who should make decisions if patient is unable to do so.
• Issues occur where no “right” answer or course of action is clear.
• If your institution doesn’t have a standing ethics committee, consider speaking to your supervisor about forming one for your workplace. 

Communication Is Key

“Conversations with patients and families about dying, death, and choices about EOL care are never easy,” ONS member Jeanne Erickson, PhD, RN, AOCN®, assistant professor at the University of Wisconsin–Milwaukee College of Nursing, says. “Nurses need to practice communication techniques so that they become more comfortable and skilled with having these difficult conversations with patients and families.”

Allowing patients and caregivers to speak—and be listened to—is key in building relationships and offering clear communication about the difficult decisions they’ll make during EOL care. According to ONS member Betty Ferrell, PhD, MA, FAAN, FPCN, director and professor of nursing research and education at City of Hope in Duarte, CA, “It’s helpful to ask open-ended questions and to encourage patients to share their experiences and feelings. We need to listen to patients’ stories and help them as they think through the difficult choices of a late-stage disease.”

Nurses can offer several options for families and patients to explore. “Nurses can advocate for family meetings to clarify goals of care for patients with progressive, life-limiting conditions,” Erickson says. “Asking patients what they understand about their condition, about their values and goals, and ensuring patients have accurate information about their therapy options and prognosis are critical pieces of these conversations.”

Families and patients in EOL circumstances might not be aware of planning options that could help eliminate ethical challenges if patients becomes unresponsive or unable to make medical decisions. According to Erickson, “An important role of the nurse is to help patients complete advance care plans to guide their EOL care by listening and offering necessary information.”

Ethical Challenges When Managing Symptoms

Betty Ferrell, PhD, MA, FAAN, FPCN

Symptom management is an incredibly important facet of oncology care. Nurses intervene to identify and treat symptoms related to their patients’ cancer. This might include administering medications to mitigate pain, shortness of breath, anxiety, or delirium. 

Erickson notes a number of issues that can arise during symptom management at EOL. “Nurses may find it difficult to balance the benefits of a medication or treatment—for example, relief of pain using an escalating dose of opioid medication—against the risks and side effects, like excessive sedation and constipation.” 

Ferrell notes that it’s a matter of weighing both sides of the scale. “The relief of symptoms must be balanced with the possible side effects of medications,” she says. “Fortunately, we now have so many good treatments for symptoms. The key is knowing that there is always a need for balance and to keep focused on what is in the best interest of the patient’s quality of life.”

A Team Approach to Ethical Dilemmas 

As with much of the care provided along the cancer continuum, interdisciplinary work is crucial at EOL as well. Both Ferrell and Erickson stress that using the expertise of team members during the late stages of disease can help eliminate potential ethical issues and encourage patients and their families to understand, cope, and accept an uncertain or limited prognosis. 

“Caring for patients at EOL requires close collaboration between all members of the healthcare team,” Erickson says. “If goals of care are not clear for patients, nurses should speak up to advocate for patients and families so that their preferences become known and respected and incorporated into the treatment plan.” 

Ethics in Oncology Nursing

Cancer care raises complex and often troubling issues for patients, families, and the nurses who care for them. ONS’s new book, Ethics in Oncology Nursing, edited by Jeanne M. Erickson, PhD, RN, AOCN®, and Kate Payne, JD, RN, NC-BC, examines the inherent challenges that nurses encounter when caring for patients with cancer. This book addresses key areas in oncology nursing in which ethical concerns commonly arise, including treatment decisions making, clinical trials, genetics, and palliative and end-of-life care.

Visit the ONS Store to pick yours up today.

“Nurses can help to recognize patients’ values, beliefs, culture, and support systems so that their dignity can be honored at EOL,” Ferrell adds. “Chaplains, psychologists, child life specialists, social workers, and others often have a tremendous amount of skill in assisting nurses to support families as well.” 

When faced with difficult ethical conundrums, it’s important to remember that resources are available to nurses. Moreover, you’re not alone. “Ethics consultations are available in most settings, and it’s always helpful to seek the guidance of colleagues,” Ferrell says. 

Advocating for Patients at EOL

Whether it’s because of cultural reasons, religious beliefs, or emotional reactions, sometimes at the beginning of EOL care family members may ask to refrain from telling patients about their expected prognosis. In these cases, nurses must advocate for the rights and autonomy of their patients. 

“When family members request to withhold information from patients, they are likely dealing with their own fears and grief,” Erickson says. “Nurses can provide support and realistic hope to grieving family members, advocate for improved communication on behalf of patients’ rights to receive information and make decisions, and facilitate communication between patients and families.”

Nurses are in a unique position to help family members and caregivers understand. “It’s sometimes helpful to share with families that patients know what is happening, generally even if they have not been told,” Ferrell says. “We need to be respectful and remember that patients and families are walking this path for the first time.” 

Putting Evidence Into Practice

Explore ONS's Putting Evidence Into Practice resources for more information on evidence-based interventions for symptom management. 

The Important Role at EOL 

Oncology nurses are an invaluable resource for helping patients and their families navigate a life-limiting disease at EOL. Erickson and Ferrell agree that physicians will communicate prognostic information, but nurses are uniquely positioned to facilitate patients’ final goals.

“Nurses have important input about patients’ ongoing physical and emotional quality of life and patients’ and families’ understanding of the disease and goals of care,” Erickson says. 

Ferrell adds, “Solid knowledge of pain and symptom management, excellent communication skills, and skill in spiritual and psychological care is important.” But that’s not the entire picture. “EOL is also a sacred time and we are very, very fortunate to have the opportunity to be present with patients and families at EOL.”

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