Abstract
Dear future physician selves,
W
We are premed research interns and have spent the past year focusing on palliative care projects involving patients with non-small cell lung cancer (NSCLC). As the year comes to an end, we wanted to share our observations with our future selves so that we never forget the important observations we made through the rare lens we were given so early in our prospective careers. Our daily work involved reviewing hundreds of deceased patients' charts, focusing on their last 30 days of life and identifying the resources utilized as they approached death. Before starting our research, we read extensively about the benefits of palliative care and the treatment options for those with lung cancer. We felt assured knowing these patients had options and could be comfortable as they neared death. But, as we dove headfirst into our projects, the gut-wrenching stories of pain and suffering were more than us naive med-school hopefuls were prepared for.
Literature demonstrates that stage IV NSCLC patients with early referral to palliative care are more likely to live longer than those who are not referred and are more likely to have an improved quality of life. 1 Theoretically, practices would implement this evidence-based medicine that has proven to be beneficial. However, we discovered the contrary. Our research showed a paltry referral rate of <10% across a multistate network, which was shocking. We reviewed countless charts from patients spending their final 30 days going in and out of the emergency department, spending days—sometimes weeks—on ventilators in the intensive care unit (ICU) and experiencing invasive procedures, just to prolong the struggle for another day.
That palpable pain extended to the patient's families as well; chaplain notes of families unsure of what do for their dying mother, changing their minds daily, deliberating between palliating their loved one's symptoms and putting them through invasive procedures followed by a cocktail of drugs. We noticed patterns at particular hospitals where you could see an escalation of care coming without any interdisciplinary conferences or palliative care consultations. Attempts to schedule a family conference had to be cancelled time after time because the physician had another important situation to attend to or the family did not show up. Notes from the physician, social worker, and chaplain's perspective differed greatly in terms of end-of-life priorities and showed the failures in communication between the disciplines.
When these patterns arose during a chart review, it felt like watching a horror movie as the group opens the door while the audience screams, “Why are you doing that!” Patients would inevitably be transferred to the ICU before the family, patient, and care team had a chance to properly discuss care options. We sensed there was no malicious intention, but a system rooted in its way of resisting evidenced-based change that would improve the lives of the patients. It appeared that a lot of this struggle was…avoidable. Where are the palliative care appointments? The home hospice visits? Why doesn't practice follow the evidence? Are the emotions too much to deal with? Do physicians view palliative care as defeat? These questions are outside of our scope, but the problem needs a solution.
We were in awe of the amount of resources put into patients who were dying in the ICU, receiving daily transfusions and vasopressors while being mechanically ventilated. Yet, some hospitals lacked the resources to provide on-site palliative care appointments. Patients had to travel to another facility or wait for the one on-call palliative care physician to visit them during their hospitalization and then never follow up. The catch may be that a difficult conversation must take place between the patient and physician as death nears. Although we have never been in this position ourselves, it seems that informing a family you are doing everything to keep their loved one alive would be easier than admitting all nonpalliative interventions are extremely unlikely to improve their loved one's condition.
Providers seem enthusiastic to learn the latest life-sustaining techniques, but do not take as seriously the skills and expertise needed to care for a patient as they die. We hypothesized it could be our culture emphasizing a “never quit” ethos or wanting to avoid the often-uncomfortable reality of death. Regardless of the reason for the lack of emphasis on end-of-life palliation witnessed, we hope that our future selves will learn from this experience and work to change the standard.
We understand that we are inexperienced and have observed these situations from behind a desk; we know that invasive procedures are certainly warranted in earlier stages of disease—we're not opposed to those procedures. Furthermore, to say that we could imagine being the ones providing the care for these patients would be a disservice to the amount of time and energy that physicians and other health care providers have put into their careers and patients. However, we believe being unqualified validates our opinions and feelings. We are fresh eyes and hearts unburdened by hundreds of deaths that close physicians off from grappling with intricacies of end-of-life care. We were able to experience these raw emotions before a numbness to death had set in allowing us to offer a fresh and needed voice.
No matter the reason for the lack of emphasis on end-of-life palliation we witnessed, we hope that our future selves will learn from this experience. When facing an end-of-life-situation we hope to prioritize time to meet with the patient, family, and interdisciplinary team to ensure a clear understanding of the goals of care. We will strive to have the humility to reach out to colleagues and other resources when faced with these difficult situations. We realize that the communication skills and tenacity required to work with patients and families are often draining and cannot be learned on one's own. We hope to never forget this experience as we go through the system and hard work that has produced these exact results. We hope to never forget the humanity of our future patients; to understand that part of our duty is to have tough honest conversations to instill knowledge and confidence in our patients and their families, empowering them to feel comfortable letting go rather than fighting for every breath. To my future physician self: do everything in your power to fight for your patients but have the awareness and confidence to recognize when a transition to comfort is needed and make the time to ensure it happens with an eye toward peace and dignity.
Sincerely,
Your current selves