Print Email

Medical Humanities

As the Curtains Close: Managing Death at the Bedside

Nicholas Tan

December 2, 2015

It has been six years since my grandfather passed away. A tanned, wiry man with the recalcitrance and temper of a bull, he had always been in surprisingly good health despite being a longtime smoker. However, things took a sharp downturn shortly after the New Year. His chronic coughing spells started increasing in frequency, duration, and intensity; over the next few months, he also developed an inexplicable weakness of his vocal cords which caused him to choke while swallowing on multiple occasions. I happened to be home for my summer vacation when he was hospitalized for a particularly harsh episode of coughing and choking. Extensive workup revealed little new information apart from a minimally obstructive flap in the esophagus. This flap was clearly not the main cause of his choking and breathing problems, but nonetheless my family consented to have it surgically excised in the hope, however faint, that this intervention may somehow turn the tide in his favor and pave the way for eventual recovery.

No miracles happened that day. My grandfather continued to gag and aspirate without signs of improvement shortly after the surgery and remained at the intensive care unit (ICU) in tenuous condition. The surgeons offered a tracheostomy, but my family recognized that my grandfather would never want to live with a tube through his throat. After much discussion, we opted to take him home. He was moved into a spare room at my uncle’s house, and a home-care nurse came over daily to manage his breathing and secretions.

My grandfather’s coughing rapidly worsened on the fourth day of his homecoming. All of us rushed over from work and school after receiving word of his deteriorating condition, and we stood by watching as the nurse attempted to relieve his discomfort with alternating applications of oxygen and suction. After what seemed like hours later, my grandfather took his final, feeble grasps before gradually sinking into a deep, unmoving silence. As the nurse quietly took his leave, the room began to fill with sobbing, grief, and perhaps, a small measure of relief.

My grandfather had what most people would consider a “good death”: he was able to return to the physical and emotional comforts of home and be with his loved ones until the very end. And yet, in the days and even months following his departure, a soft but persistent thought would creep into my mind. Was there anything we could have done to prevent his death? Did we try hard enough? I like to think that we did, that we made the best decisions possible under the circumstances, and that my grandfather was able to end his story the way he would have wanted. Even so, such doubts are difficult to extinguish, and part of me secretly wished that I had been equipped with the medical knowledge necessary to have a full grasp of his clinical situation and to maybe even cure him completely. 

I had thought this knowledge would eventually come to me during medical school, and in some ways it did. Throughout my clinical rotations, I learned about and witnessed the technological marvels one can wield to anchor patients to life, no matter how dire the situation. But as my time on the wards grew, it became increasingly obvious that staving off death was not the same as saving lives. Despite the magnificent progress that medical practice has made, there are limits as to what can be done, past a certain point. And our unwillingness to accept the inevitability of death has placed a heavy financial burden on our healthcare system without reducing our patients’ suffering in their final moments.

I was on my third week of an Internal Medicine rotation when my attending accepted a patient he had known for several years onto our service. An elderly man with a failing heart, he had been recovering from a bad bout of pneumonia at a nursing home when he was brought back to the hospital, confused and gasping for air. He looked terribly frail as he lay in bed – pale, listless, every breath a strain. His son, who was very involved in his care, strongly believed he would recover completely from his ordeal. My attending, a firm but big-hearted soul, also felt that our patient would survive and reassured the son that we would do everything we could to help him. The nursing and house staff, however, did not share their optimistic outlook on his situation and advocated for hospice care, an option that my attending did not want to consider; this resulted in occasional tense disagreements throughout the hospital stay. As for myself, I held the middle ground: although I knew our patient was terribly ill, I felt there was a chance we could eventually save him through optimization of his medical care.

However, it became clear that we were fighting an increasingly uphill battle, and losing. Despite aggressive antibiotic and diuretic administration, he remained lethargic and short of breath. In addition, his anemia and kidney function continued to worsen. His prognosis was becoming graver by the day and a goals of care discussion was sorely needed. Unfortunately, our patient was unable to reliably convey his wishes and had not prepared an advance directive beforehand. Furthermore, his son continued holding out hope for a full recovery and adamantly refused to contemplate the possibility of palliative care. Faced with little choice, we continued our struggle against an ever-deepening problem list, a struggle that finally ended with his death the following week, but not before he suffered further episodes of aspiration, hypoxia, and acute complications from renal failure.

I often think back to this case and wonder what we could have done to improve our patient’s care towards the end. Despite our undeniable commitment and best intentions, we did not succeed in preventing his death and might have even prolonged his suffering. In my mind, what led to this poignant outcome lay in our failure to reconcile our expectations with the reality that faced us. All of us had a role to play. Firstly, the son was understandably driven to do everything he could to save his father. However, this sentiment filled him with a false sense of optimism and blinded him from the patient’s increasingly grim situation. Next, we as his primary team had sharply contrasting views on our patient’s prognosis; without an objective and unified sense of what lay ahead, our ability to recommend appropriate guidance for our patient became significantly impaired. Finally and most crucially, our patient did not provide insight, either verbally or through a written directive, into his preferences for end-of-life care. Blinded, disoriented, and uninformed, we fell back on the one strategy we knew best: to delay the march of death, regardless of the cost or consequences.

End-of-life care is an exceedingly difficult yet critical aspect of contemporary medicine. In his excellent book “Being Mortal”, Atul Gawande outlined the struggles that he encountered while navigating the perilous waters of terminal illness with his patients as well as his family. The most basic function of medicine is “to fight death and disease”. However, he points out, death is the enemy that eventually wins, no matter how mightily we might rage against it. Faced with an undefeatable foe, our role as healthcare providers is neither to unleash all resources against it nor to meekly abide by our patients’ (or their loved ones’) demands, but to understand and act upon the principles and wishes that define our patients, in life as well as in death. Such an understanding does not and should not develop overnight. We at all levels of the healthcare system should strive to elucidate what our patients value most in life and what they are willing to sacrifice in the event of a debilitating or mortal situation. Facilitating these discussions is delicate, onerous, and oftentimes awkward work. But if executed well, we will be better equipped to provide patients with the interventions and care most consistent with the way they want to lead their lives, and as the curtains draw to a close, the way they want to see them through.

I spent a month in the Coronary ICU (CICU) during my final year of medical school. There, I was responsible for the care of an old lady with severe symptomatic mitral regurgitation. She was deemed too ill for invasive repair and so we made a plan to optimize her medications. But no matter what we did, blood continued to backflow from her heart to her lungs and she grew progressively weaker with each passing day. Burdened by dementia at the start of her ordeal, she was now unable to respond meaningfully to our questions or commands. Sensing her impending death, the cardiology fellow and I escorted her two sons into a conference room. As tactfully but honestly as he could, the fellow described the gravity of our patient’s prognosis and the limits of our ability to manage the mitral regurgitation. Unlike the previous patient’s son, they had a clear understanding of their mother’s situation and were duly realistic about her chances of survival. By the end of the discussion, everyone was on the same page. All aggressive therapies were discontinued and comfort care measures were instituted. In addition, both sons intimated that our patient had previously expressed a wish to be in the company of relatives and friends in her hometown when she passed away, and so preparations were made to have her transferred safely to a local hospital. I lost track of her after she left our facilities, but I am hopeful that she, like my grandfather, was able to depart this world in the manner that she would have liked: at home, with loved ones, and in dignity.

View Editor's Comments