By Dr. Om Parkash
Since the beginning of the 21st century, palliative care has emerged as a prominent aspect of medicine. Palliative care focuses mostly on improving the quality of life in severely ill patients, but it also involves comfort-based care for terminally ill patients. Despite increased awareness of palliative care among health care providers, decisions made in respect to end-of-life treatment are often difficult because they can be subjective.
I grew up in a culture where talking about death was considered taboo. Physicians and members of the patient’s family did not always make a terminally ill patient aware of the realistic prognosis of their disease. After medical school, I practiced as a general practitioner for one year in my home country, and occasionally I was asked by family members of terminally ill patients not to disclose the diagnosis or prognosis to the patients. Their intentions were well-meaning; they believed that breaking the news to the patient about their lethal disease would simply make their remaining days more miserable than necessary.
Since I started residency in the United States almost two years ago, I have always thoroughly interrogated my recommendations to send patients to hospice care or talk to families about withdrawal of care. Many factors play a vital role in the decision, including science, ethics, and culture. Some patients also express wishes before intubation that they want everything possible to be done to make them live. Before talking about hospice care with patients or family members, I carefully consider the situation and ask myself questions such as, can I offer something else to the patient? As I work in a community hospital, I wonder if this patient could benefit from a tertiary level of care. Several times, I disagreed with my team about sending patients to hospice or comfort care, despite knowing that the chances of a positive outcome based on the patient’s status were grim.
I did my first ICU rotation as the second peak of the COVID infection struck the United States. I witnessed death hounding those rooms. Frightened patients and family members were dependent on health care providers’ judgments about prognosis—but providers were also unsure about the prognosis, and the disease course was unpredictable. I had these types of discussions with one or more patients and their families every day. I also witnessed desperate families wanting to touch their loved ones one last time through the glass doors of ICU rooms. I had to hide my emotions several times to console the families trying to process all the information and make a decision about their loved ones.
One specific incident further deepened my understanding of end-of-life discussions and their complexity. I was part of the team taking care of a young patient with a COVID-19 infection. The patient was doing poorly in ICU, requiring maximum ventilatory support. The patient also had an underlying autoimmune disease involving the lungs. Our team initiated a discussion about the withdrawal of care with the family at one point. However, given the difference of opinions about prognosis from the physicians on the treatment team, the family wanted to continue the care. The patient stayed in the ICU for about 45 days and developed multiple severe complications. Eventually, the patient was transferred to a long-term care facility with tracheostomy and feeding tubes.
Two months after that discharge, I received a call from the ICU staff saying the patient had come to the hospital to express her gratitude to the treatment team. I had time, so I walked over to the ICU. I saw the patient sitting in a wheelchair with a nasal oxygen cannula. The patient was waving both hands to greet me. For a moment, I thought this could not really be her, or that I must be dreaming, because nobody from my team thought she would demonstrate this excellent of a recovery in such a short period.
After almost two years of residency, I have gained enough experience to predict specific disease prognoses roughly. However, an individual or team’s prediction is often uncertain or biased. Several factors confound these types of decisions, the main one being that the human body’s potential is so phenomenal that sometimes it leaves us in disbelief. One of my attendings always says, “The person you are taking care of is loved by someone as much as you love your loved ones.” Making decisions about end-of-life is not always easy, as the miracle of the human body sometimes transcends all the odds and leaves us spellbound, rendering our prediction about prognosis erroneous.
No matter how much experience and knowledge a physician has, life and its end are sometimes entirely unpredictable. Thus, judging the prognosis of any terminal disease is an ever-evolving experience. Both physicians and patients’ family members should consider the scientific, ethical, and cultural concerns surrounding these situations and constantly question themselves about the authenticity and justification of the decision, as the outcome may surprise them all.
“Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things.”
– Atul Gawande