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The Ethics of End-of-Life Care By Joe Darrah
Date Posted: 30/Jan/2019
Common occurrences are likely to arise in this area of care. What type of advice do nurses have for their peers?
Regardless of one’s healthcare condition, contemplating end-of-life care is never an easy thought process for the patient or loved ones. For nurses who are tasked with helping to guide decisions related to the initiation of palliative care and advanced directives, no two scenarios are the same and ethical dilemmas can often arise. ADVANCE recently spoke with three nurses who shared their most frequent types of ethical decisions that they’re confronted with and how they have attempted to navigate specific encounters.
Direction for Directives
Though they spend their time in two distinctly different settings, Michelle Moccia, DNP, ANP-BC, CCRN, GS-C, a senior program director in the emergency department (ED) at St. Mary Mercy Livonia (MI) Hospital, and Deborah Dunn, EdD, MSN, GNP-BC, ACNS-BC, GS-BC, a part-time private practice gerontological nurse practitioner who works in the Greater Detroit region (and is a dean/professor/and former nurse practitioner program director at Madonna University College of Nursing and Health in Livonia), say the lack of advanced directives is the most common risk to facing an ethical crossroads during the delivery of care.
“In the ED, it is also not receiving an advance care planning document sent in with a resident from a facility,” said Moccia, past president of the Gerontological Advanced Practice Nurses Association (GAPNA).
Still, the more frequent dilemma that she said comes to mind is when sudden traumatic events, such as a stroke, acute respiratory failure, fall or sepsis infection, results in a patient that is unable to communicate goals of care on top of the sudden need for a directive that likely does not exist. If the patient has not communicated their end-of-life preferences and/or not completed a directive with a designated proxy or surrogate, the loved ones, and therefore healthcare staff, may not know how to “guess” preferences.
“This can cause moral and spiritual distress both for the family and for the provider,” Moccia said. “The family may be wondering ‘am I choosing the right care, they would want,’ and if there is no directive the healthcare professionals must provide care based on the consensus of the family.”
This is not to suggest that the existence of a directive is the ultimate “cure all” for these situations, however. Family members may simply not know of a directive or could actually not be in agreement about the patient’s preferences and cause an uncomfortable state. Or, “sometimes they had completed their directive years earlier and are now in a very different health state than at the time the directive was completed,” said Dunn, president-elect of the GAPNA. Often, patients and families are faced with making healthcare choices when they are time-pressured to make decisions, such as re-hospitalization, pursuing invasive and sometimes burdensome treatments, and choosing intensive care or life-sustaining treatments such as mechanical ventilation. This poses several concerns for the healthcare team and the patient when a healthcare crisis occurs.”
Although “in the moment” there is not much recourse other than to follow a directive explicitly or follow a loved one’s wishes in the absence of a directive, both Moccia and Dunn say that nurses can best prepare themselves for these experiences and perhaps reduce the odds of these occurrences happening within their communities by proactively creating their own directives in an attempt to better relate to patients and families as well as educating people in their communities on the importance of directives and how to initiate them through hosting local events and health fairs.
“Hold sessions at your hospital with a trained facilitator to guide nurses through end-of-life planning,” Moccia suggests. “What do you understand about advance care planning? What fears or concerns do you have?” These are the questions that nurses can answer for themselves and for their community members to help ease the decision-making process for all involved. Moccia’s local Great Lakes GAPNA chapter helps to host an annual National Healthcare Decision Day in April that addresses the importance of end-of-life planning and completion of a directive, she said. Additionally, Dunn said practicing nurses can gain additional preparation in end-of-life care through nursing continuing education programs.
“We have special interest groups within our organization where nurses can get the mentorship they need to grow their knowledge and skills in all areas of gerontological specialization,” she said. “We interact with members of the community who have come to receive information on directives and to begin to explore starting the conversation with their own families. Participants learn the importance of documenting their care wishes and communicating these to healthcare providers and their families.”
End-of-Life Anxieties
Sometimes, an ethical dilemma may originate in the nurse, said Robin A. Hertel, EdS, MSN, RN, CMSRN, a nursing education specialist for Ascend Learning, Leawood, KS, and president of the Academy of Medical-Surgical Nurses. For instance, the administration of pain-relieving medications in increasingly larger amounts can be difficult for nurses providing end-of-life care,” she said. “Despite research indicating that the administration of opioids to manage pain will not hasten death, nurses may be hesitant to provide adequate symptom relief for fear of causing respiratory depression and potentially the ultimate death of a patient.” Other types of judgment calls that can be stressful concern such aspects as the patient’s right of autonomy and allocating a fair distribution of resources, according to Hertel. “Patient families and providers have asked nurses not to discuss the patient’s prognosis with the patient in an attempt to retain the patient’s sense of hope, diminish fear, or in relation to a cultural or religious belief,” she continued. 
“This request violates the patient’s autonomy as well as the nursing code of ethics. Another stark reality is that patients who have more debilitating illnesses require more extensive care and may not have the social or financial support that other patients may have. Hertel said maintaining communication with patients, families and members of the healthcare team is a vital way to come to the best conclusions. “Patients and families may not understand illness trajectories or the abilities of nurses and members of the healthcare team to provide palliative care,” she said. ‘Having frank discussions with the patient and family regarding their goals for care and collaborating with the healthcare team to provide appropriate care based upon these is paramount.”
Hertel said that it’s important for nurses to recognize they can’t always manage all of the complex patient and family needs that come with end-of-life care and that it is important to make referrals to advanced practitioners, palliative care teams and, occasionally, ethics committees when trying to meet the needs of patient and families, especially if these needs and goals differ.
“It is also important for the nurse to integrate self-care strategies to avoid moral distress and compassion fatigue while also building resilience,” she said.
This requires the nurse to take some time to grieve and to deal with the suffering, grief and loss that patients and families experience at the end of life.”
Personal Reflection
Dunn said a recent set of ethical circumstances related to a specific patient underscores the ongoing possibilities that nurses will continue to come up against. “Mrs. R,” an 80-year-old who was hospitalized for recurrent congestive heart failure, cardiac arrhythmia, and exacerbation of COPD was also found to have worsening end-stage renal failure. “She was seen by a nephrologist in the hospital and offered hemodialysis for life-sustaining therapy,” Dunn related. “She declined hemodialysis. She agreed to short-term rehabilitation. I was seeing her for a follow-up visit in a nursing home where she was receiving physical therapy and supportive medical treatment following hospitalization. Her goal was to regain her strength and return home. The day I saw her, she had a very high blood potassium level, which required treatment. She was agreeable to oral medication to treat her high potassium, but declined re-hospitalization. She was able to make her own decisions and she was adamant that she did not wish to return to the hospital. She did not want further treatment and understood that untreated [kidney failure]would likely lead to further episodes of congestive heart failure and high potassium, placing her at high risk of life-threatening arrhythmia and death. She explained that she really felt she had been sick ‘long enough’ and, if it was her time, then she was ‘ready.’
Her children were upset with her decision to decline hemodialysis because they felt the treatment might provide a few more months of life. We had an interdisciplinary team meeting, and spoke with Mrs. R and her family. As difficult as this meeting was, it was really productive and affirming, and we were able to facilitate the end-of-life conversation between Mrs. R and her children. We were able to establish a plan of care that included ‘do not resuscitate orders,’ and a consultation with hospice. She was later discharged home with home care hospice.”
Joe Darrah is a freelance author based in the Philadelphia region who has been covering the healthcare field since 2004. He may be reached at [email protected]

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