Struggling to Save the Chronically Ill: The Battles between Love and Difficult End-of-Life Decisions
Running like tigers, pulling crash carts, yelling for help, generating rush calls, keeping a distressed family’s uncontrolled aggression on an even keel – all this had become routine for the hospital’s medical unit staff. Looking upon this frail 78 year old man barely clutching on to dear life, one would think the merciful thing to do would be to pull the plug and let him rest peacefully in the slumber of death. At least a health professional would say that.
To his only son, in whose hands was his medical care, however the situation called for the opposite reaction; he insisted that every machine be used to keep his father’s heart beating and his breathing normal. His love, loyalty and devotion to his parents would leave no stone unturned in ensuring the highest level of care for them. Upon being asked once he replied, “I won’t let my father die too early. With all possible treatments, I will try utmost to his last breath.
I can’t forget my luxurious days, how my parents nurtured me and the childhood they created for me.” His words left me amazed; on one hand I praised the Almighty that such filial devotion still exists in the modern world where most children lust after prestige and material gains, forgetful of their obligations to their parents. But from the perspective of a health care professional, I truly believed the patient deserved comfort care rather than active treatment, and the only thing that could be done for him was to administer pain relief medications
This patient’s story was typical of the cases I encounter as a nurse. Facing multiple chronic illnesses with a poor prognosis, endless efforts of the health care team, failure of physicians to treat, excessive resource utilization, the patient deferred his death only through a pacemaker and ventilator. And through the imprudent resilience of his single middle-aged son, who would not give up. The patient was diagnosed with exacerbation of chronic obstructive pulmonary disease (COPD), chronic kidney disease, and complete heart block functioning through an implanted pacemaker, backed by a ventilator over the last 7 years. With a GCS of 2/10, he was regularly nourished through a PEG tube, and his hygiene care was ensured by private female nurses. He was no more than a beating machine; nothing was left functional to struggle for prolonging his life.
He had been admitted to the same unit on multiple occasions and whenever admitted stayed longer with VIP demands, asking for a single staff to be kept solely for the patient’s care. Not even a minor compromise, like a 5 to10 minutes delay of the housekeeping staff was tolerable to his son. None of the nurses were able to manage caring for the other patients in the units while caring for this one patient. Shifts to shifts passed on for the nurses standing on their feet, bending and running all along, for whom a 10 minutes break was no less than pure bliss and a breath to oxygenate themselves.
Considering the patient’s condition and state of disease, his bedroom depicted the scenario of a mini ICU equipped with the latest technology for his life prolongation. With borderline vital signs, at times inotropes were like meals to him that needed to be changed every second day depending on his vitals compensation. Dialysis and packed cell transfusions accompanied him at each stage like faithful companions. Nevertheless, the big enemies caught up with him; MRSA (methicillin-resistant staphylococcus aureus), CRE (carbapenem-resistant enterobacteriaceae), Acinetobacter and Pseudomonas had hijacked all his organ systems, complicating the situation further day by day.
The situation led to a failure of physicians to treat him further, years and years of efforts only sustained him for a couple of days then again the flood of symptoms pulled him to the hospital. The subsequent contact precautions were like getting done with a surgical scrub, the meticulousness of staff was paramount; even a single blood product before transfusion was to be double checked with both the RN’s with their gloves on. Trying to preventing his father from catching more infection, even a single fly in his room led him to complain to the management about the environment of the ward. Daily medications that were supposed to be diluted were prepared at the bedside as per the request of his son, so as to eliminate any error.
I can never forget his last stay in the unit, when the father finally took his last breath. Getting sick had become routine for him; much counselling was given to shift the patient to comfort care status. But the refusal of son after each event was an expected response. Getting rush calls to doctors were like a routine page when no option other than atropine left. Atropine, dopamine, dobutamine or epinephrine, lasix infusion to insulin infusion had all coursed through his veins.
In his last days on average 5 to 6 rush calls were generated per shift. While considering the situation, the health care team as always, was prepared to rush in to save the patient, but that day there was a twist in our course of action. Now the rush was to follow the orders of a non-medical person standing beside his father enforcing the staff to administer atropine/epinephrine – his continuous orders and interruptions being nothing more than a source of chaos and anxiety to the staff. At times he mimicked a code leader who led the nurse instantly but with trembling hands to administer lifesaving medication to his father. The complicated condition of his father, the frequency of the rush calls as well as the justifications he demanded for every intervention could be judged through the way he used to order medications while the code team arrived during rush calls, despite the nurse being aware of all appropriate drugs to be administered.
Extensive counselling to the family to keep patient on comfort care remained ever unsuccessful. The son despite being a highly qualified non-medical professional and having been informed of the poor prognosis of his father by several experienced physicians, he chose to keep his father full code. He had vowed not to spare any intervention for his father.
He tried to keep medical professionals interested in his father’s care but as the time passed on and no improvements seen in his conditions as was expected under medical terms, the medical staff’s interest towards his treatment faded away. Rather, the staff focused on providing him comfort to the best possible extent. One day considering the patient for pic line insertion, and the next day for joe-cath insertion and next cardioversion on the following day was difficult for us.
Due to the preference of aggressive treatment options by the son, the objectives of both healthcare team and son did not share common ground. And a day appeared when no one except the son wanted to administer atropine witnessing bradycardia at every few hours. The situation truly depicts the feelings of the staff towards the patient whom we wanted to keep peaceful and out of pain. However, this theory of alleviating pain wasn’t well understood by the son who when once inquired, stated “my father created my life full of luxuries that I can’t pay him back else than carrying him in a way that none of the treatment is left that makes his survival possible.” Despite the incongruence in views about the patient’s treatment plan, the medical team performed their best being honest and clear at every step.
As a human being, this patient’s son seemed so compassionate, loyal, caring and honest, but this view of mine soon faded away as I looked through the lens of my medical world. I pitied the patient that his son did not understand the real feeling of being in a peaceful state. By prolonging the poor man’s life, his son in effect made him suffer in a hospital bed for days, all because he was too blinded with false hope to see clearly what his father was going through.
I had never before encountered a patient’s family that been in such deep denial as to overlook the need of the hour and let their loved one linger in painful limbo. Alas, the day came when the patient expired; following back to back rush calls and tiring efforts of the healthcare team. The staff too, released a breath of relief – for to us the patient was finally liberated from his prolonged suffering that was aggravated day by day, because the son was unable to truly empathize with his father. The resources that had gone into this patient’s care for years got some time to recharge for others who were in dire need and the staff got time to energize themselves to better care for patients who truly have a chance at life.
About the Author: Sonam Shoukat Ali graduated in 2013 from The Aga Khan University School Of Nursing & Midwifery, Pakistan, with a Bachelors degree in Nursing. Soon After that, she started internship at The Aga Khan University hospital at the cardio-pulmonary unit. After receiving license of Nursing she started working at the same unit as a registered nurse and is currently working there taking leadership roles, teaching and guiding the novice nurses at the unit. During her student life, she has provided care for several patients at various hospitals of Karachi, Pakistan. Sonam can be reached at firstname.lastname@example.org
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