Working as a nurse can be tremendously rewarding. This week I received deep appreciation for my knowledge and care from my patient and her family after helping her safely deliver a healthy eight-pound baby boy. We even had a patient buy the staff an expensive lunch. While it is lovely to be lavished with gifts, nurse also appreciate a simple thank you. That is not always the case.
Some days caring for a patient is a battle met with argumentative family members that lack trust in the staff and medical system. A healthy dose of questioning and being an informed consumer is necessary but it should be done in a respectful manner and with the intention of optimizing the safest care of the patient. Often our extensive training is challenged by a simple Google search that lacks the complex picture, which can ultimately create barriers to care.
This week a nurse shared one of her most difficult experiences of her career with me. She cared for a 12-year-old boy in the ICU, recently treated with an allogeneic bone marrow transplant. The transplant was offered as a last resort and fortunately for the patient, he had a successful engraftment. The bone marrow transplant saved his life.
Anti-rejection medication is crucial for transplant patients to prevent the body from recognizing the new cells as foreign. The patient’s father decided he “knew more than the doctors” (though was not medically trained himself). He refused to give his son the required medication resulting in the development of a life threatening condition called graft-versus-host disease (GVHD).
In simple terms, the new graft recognized the patient’s body as foreign and began rejecting it. This boy’s disease was cured but he was dying from a potentially preventable consequence. His skin blistered and sloughed off his body. His arms became contracted and he was unable to bend them. His lungs failed, requiring a tracheostomy for long-term dependence on a ventilator to breathe.
During the patient’s lengthy stay in the ICU, the father, who was of an Orthodox Jewish background, posed several physical and psychological challenges for the multidisciplinary team. For example, each Friday night, he would light Sabbath candles in the oxygen-rich environment of the ICU – clearly a fire hazard -despite receiving electric candles from the hospital rabbi.
The father was verbally abusive and disrespectful to the nurses, physicians, and other members of the multidisciplinary team, which created challenges for continuity of care. Consultations with the patient advocate and social worker were unsuccessful in mitigating his disruptive behavior, requiring security to remove him from the ICU frequently. The father had previously been banned from a nearby hospital for similar behavior.
After several months in the ICU, the patient was discharged home with a portable ventilator and a home health aide. The aides were unable to endure the father’s behavior. None made it through an entire shift. The patient’s sisters were not willing to provide care. Due to lack of adequate care, the patient was readmitted with pneumonia and died in the ICU.
The nurses in the ICU were deeply impacted by this very sad case. While it was exhausting physically and emotionally to care for this patient, what bothered most of the nurses was that the patient was cognizant of his family’s behavior and unwillingness to help care for him.
For those of you reading who have had similar experiences, please share your comments of what helped or hindered situations you were involved in.
Let me know your thoughts.
Should this be considered child abuse?
Should care providers be subjected to abuse from family members?