Almost all oncology nurses report barriers to ethical end-of-life care
Nurses "working in the dark" on prognosis
Almost all (96%) of 173 oncology nurses surveyed reported concerns about system barriers in their efforts to help patients prepare for the end of life, according to a 2014 study.1
"A surprisingly large number of nurses reported experiencing ethical dilemmas regarding prognosis-related communication with advanced cancer patients," says Susan McLennon, PhD, ANP-BC, the study’s lead author. McLennon is associate professor and assistant chair in the Department of Science of Nursing Care at Indiana University in Indianapolis.
"That 60% of the nurses reported concerns about truth-telling was particularly surprising," says McLennon. Nurses perceived physicians as:
- avoiding difficult conversations about a dire prognosis;
- failing to ascertain end-of-life wishes with their patients;
- using vague or medically obscure language.
Improvements in communication among the health care team about prognosis that identify patient goals of care, particularly in terminal conditions such as advanced cancers, are critically needed, urges McLennon.
"All parties did not have a clear understanding of treatment plans and goals of care," she says. One nurse stated, "We are working in the dark regarding patient prognosis."
Nurses are accountable both legally and ethically for their own nursing practice, emphasizes McLennon. The American Nurses Association’s 2001 Code of Ethics directs nurses to meet the comprehensive needs of patients, particularly at the end of life.
"In the heirarchy of our health care system, physicians generally lead and direct patient care," says McLennon. "However, nursing care extends beyond simply following physicians’ orders."
Lack of communication
Ruth Ludwick, PhD, RN-BC, CNS, a nurse researcher and gerontological nurse educator, recently sat in on an ethics committee on the topic of advance care planning. Ludwick is professor emeritus at Kent (OH) State University and a research consultant at several hospitals.
"I heard a lot of people expressing isolation. The physicians, nurses, and respiratory therapists all feel alone in dealing with this issue," she says. Poor communication among the team members can lead to problematic end-of-life care.
"You’ve got different people on different shifts, and different physicians coming in with different viewpoints about how to handle it," says Ludwick. The patient may have an oncologist, but is now being treated by a cardiologist, for instance, and the nurse doesn’t know which physician to talk to.
"If you have a primary care physician who doesn’t want to talk about it, and you don’t have a family member producing a document, then you start to see the issue of Who do I go to next?’ coming up," says Ludwick.
To address obstacles faced by nurses in providing ethical end-of-life care, Ludwick offers these practices:
- Organizations need clear policies on the pathway to follow.
"You don’t want policies that are too prescriptive. There are always going to be situations that aren’t covered," says Ludwick.
Often, policies are unclear on the point at which to call in a bioethicist. As a result, says Ludwick, "sometimes that bioethicist gets called in awfully late in the game. Another thing that providers often don’t realize is that it doesn’t have to be a bioethicist."
Clinicians shouldn’t hesitate to call in a physician, nurse, or social worker with experience and education in end-of-life care, she advises. "A clinical nurse specialist might have expertise in oncology and palliative care, and also have expertise in advance care planning," says Ludwick.
If this individual isn’t directly involved in the case, he or she may be the first "go-to person" for a discussion. "A policy on how to pull together a diverse group, consisting of a bioethicist and several practitioners experienced with end-of-life care, may be necessary in complex cases where discussions may already have started to deteriorate," says Ludwick.
- Professionals may need to be re-educated on the ethics of advance care planning.
Providers’ own comfort level with the topic of advance care planning is sometimes an obstacle to ethical end-of-life care. "There are a surprising number of providers that haven’t had a lot of education about advance care planning," says Ludwick. "Frequently, a tick box’ approach is used — that is, Does the patient have an advance directive or not?’"
Advance care planning is an ongoing process, says Ludwick — starting with the diagnosis of a life-limiting, often chronic disease, and continuing through the end of life. This involves ongoing discussions among health care providers, patients, and families about values, preferences, trajectories of disease, and decisions that may be needed as diseases progress.
The question "Is there an advance care directive in place?" is typically asked and answered, Ludwick says, but "nobody asks to see it, and nobody asks whether it needs to be reconsidered."
She recommends using interprofessional simulation to address common end-of-life scenarios. "A nurse may walk in and sees the patient is not doing well, and knows the diagnosis. The question becomes, What are we going to do?’" says Ludwick.
A family member may arrive and demand interventions that conflict with the patient’s known wishes, while the physician says it’s not their concern, and the respiratory therapist is about to start the patient on a continuous positive airway pressure machine.
By simulating challenging real-life situations such as this, says Ludwick, "instead of following a didactic, static approach, that’s where you get at the best teaching related to ethics — and probably the best improvement beyond just straight knowledge."
- McLennon SM, Uhrich M, Lasiter S, et al. Oncology nurses’ narratives about ethical dilemmas and prognosis-related communication in advanced cancer patients. Cancer Nurs. 2013;36(2):114-121.
- Ruth Ludwick, PhD, RN-BC, CNS, Professor Emeritus, Kent State University, Kent, OH. E-mail: firstname.lastname@example.org.
- Susan McLennon, PhD, ANP-BC, Associate Professor/Assistant Chair, Department of Science of Nursing Care, Indiana University, Indianapolis. Phone: (317) 278-0459. Fax: (317) 274-2411. E-mail: email@example.com.