Nursing is a dynamic and rewarding profession as one navigates the boundaries of art and science. The edges can be blurred when practices are vague and not supported by evidence, and ambiguity can be a nemesis. Futility presents many challenges to the health care team to navigate ethical practices with patient conditions that are observed and assessed as having the hallmark of suffering. Now suffering is very individual due to life experiences, personality, cognitive condition and spiritual beliefs.
The crux that needs to be addressed is how to deal with a morally distressing issue. End-of-life treatment is a broad issue that includes many factors, including advanced directives, DNR orders, hospice, palliative care and decisions around withholding or withdrawing treatments. Many nurses feel quite alone in their feelings about feeling morally distressed as witnesses to suffering, pain, and recognizing futility. The distress is compounded when there is disagreement about treatment goals, whether by the family or the physician(s), and who is there to speak for the patient?
Three Vignettes
A young child with cancer has undergone treatment, including all the drugs possible with no effect, and a bone marrow transplant that was rejected. The parents of the four-year-old are having difficulty accepting that death may be inevitable and implore their core nurse to plead their case not to give up on their child to the physician. The nurse has conflicting views as she can appreciate the parents’ wishes, the physician’s prognosis and her own belief the family will suffer with continuing treatment (CNA, 2001).
A 45-year-old woman, married with three children under the age of 10 years, has a large intercerebral bleed. It’s been four weeks, and she has not regained consciousness, and physicians suggest she will remain in a persistent vegetative state. Today, the family have been notified she has developed renal failure; they support the patient’s wishes and want everything done, and the team expresses concerns that the patient’s condition is futile. The nurse assigned to her care is left to respond to the family’s distress (CNA, 2001)
A 16 year old boy was admitted to emergency following a serious car collision. His family were located and brought in for a family meeting. The intensivist was at first expressing guarded optimism; he conveyed to the parents that it was too early to predict if the child would pull through. The next day the parents were seen at the bedside as their son’s condition deteriorated. The parents listened to the team, who were also engaged in a side conversation about bed management and the emergency department holding critical care patients. The parents listened, cried quietly and the team moved on in their rounds. A change in the assignment occurred, and the incoming nurse found the parents distraught, they told the nurse the life support would be removed because the bed was needed for another patient. The nurse realized the parents had received incomplete information and called the team back to talk to the parents about the futility of further treatment for their child.
Always consider the bigger picture; therefore, if a physician-centred or patient-centred treatment plan is applied, one needs to keep one’s mind open to potential conflicts. How concrete are the futility factors? How does a healthcare team consider the family’s wishes for an outcome that differs from the physician’s?
When there are no more cures to offer, there is nursing care that is patient-valued and includes interventions when medical treatment is futile. Nurses are sensitive to the signs of impending death and wish to provide support for patients and families facing death. Challenges occur when situations are uncertain, and how to manage the emotions of distressed family members. The emotions may range from anger, despair, pleading, and/or fear. The nurse’s role is one of being a navigator, care provider, communicator, and role model so the family members may comfort and support their loved ones.
A clinical example is when I practiced in a Neonatal Intensive Care Unit. A baby of a few days old had treatment withdrawn, and the parents were in a bereavement room. They held their baby and I strived to be unobtrusive as I supported them in bathing the baby. Then the mother gestured for my scissors, cut her son’s hair in expert fashion, and thanked me for the scissors. I was humbled by her grace and sweet smile and realized in that moment their needs were met in the midst of grief.
We all are followers of the Code of Ethics of our professions; they provide direction for ethical decision-making and practice every day in environments influenced by current trends and conditions (CNA, 2001). Our professional values give us a voice to be advocates and take action on behalf of patients and their families. Never reach the point of not caring, as humans practice the values of health and well-being, choice, dignity, confidentiality, fairness, accountability, and practice environments conducive to safe, competent and ethical care (CNA, 2001). End-of-life care is a privilege; as nurses, we’re trusted to support the first and last breath and prn for in between. Namaste.
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Paula M
Retired Registered Nurse (Non-practicing) Storyteller, Healer, Scribe, Transformational Leader
Life of a Nurse 
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