Written by Dr. Erin Jenkins
As healthcare professionals, many of us will never forget 2020. During a global pandemic, millions of people died, and families were forced to grieve losses they never imagined they would face. Loved ones were taken by a virus that moved quickly and unpredictably, leaving little time to prepare emotionally or practically. During this period, I was working in hospital based palliative medicine. In more typical times, our work focused on supporting people living with chronic illness, managing symptoms, and helping patients clarify how they wanted to live while navigating conditions such as COPD, CHF, and cancer.
During the pandemic, that work shifted dramatically. Patients who had long been managing chronic disease were suddenly confronted with a virus that disproportionately affected those same conditions. Regardless of diagnosis, one reality remained constant: COVID significantly increased the risk of death for patients with chronic illness.
End of life conversations became part of our daily work. We spoke with patients struggling to breathe, many dependent on oxygen or ventilatory support, including individuals with no prior respiratory disease. Yet, when asked about their wishes, most patients did not have clear answers. Families often struggled to accept that their loved one might die. Hope persisted, as it always does in medicine, but it became increasingly apparent that many patients and families were completely unprepared to make these decisions. Some waited until it was too late.
It was during this time that I began to fully grasp how many Americans lack end of life plans, even those who regularly interact with the healthcare system. Research suggests that fewer than one third of U.S. adults have completed an advance directive to guide care during times of crisis (Auriemma, Halpern, Asch, Van Der Tuyn, & Asch, 2020). These rates vary based on age, education, and other social determinants. Together, these findings highlight the gap between clinical recommendation and real-world readiness. It suggests a broader disconnect between patients and providers, as well as between patients and their families, leaving many unprepared to make critical decisions under duress. The question is, why?
One persistent myth in healthcare is that end of life planning is only for the elderly or those with terminal illness. This belief delays conversations that are both necessary and appropriate for all. End of life planning is for everyone and involves more than signing a document. It is a process designed to align care with what matters most to patients and their families. While these discussions can feel uncomfortable, proactive conversations lead to better alignment of care, reduced moral distress, and support clearer decision-making during times of crisis. These discussions include preferences regarding CPR versus DNR status, surrogate decision makers, mechanical ventilation, artificial nutrition, and post death wishes. While formal documentation is important, the most critical step is initiating the conversation. Without clarity, families are left to make life altering decisions under intense emotional strain, and clinicians are placed in ethically challenging positions.
Another common myth is that discussing end of life planning takes away hope. During the pandemic, many clinical teams hesitated to initiate these conversations out of concern that they might cause anxiety or signal that death was imminent. But our experience in palliative care showed the opposite. Even when the focus of conversation is a difficult topic, patients often felt less anxious and more supported. Additionally, research shows that advance care planning improves proximal outcomes, including communication quality, decisional confidence, and patient-surrogate congruence (Malhotra et al., 2022).Trust between patients and their care teams also increases. These discussions are not about removing hope. They are about preserving dignity, honoring autonomy, and reducing unnecessary suffering.
There is also a common misconception that patients will bring up these conversations “when they are ready”. In reality, no one ever feels ready for these discussions. Patients cannot ask for guidance around decisions they do not yet understand or know need to happen. That is where we come in. As healthcare professionals, part of our role is to guide patients through complex medical decisions, including those related to end-of-life care. Many clinicians who consulted our palliative care team in 2020 did so because they were unsure how to begin these conversations. Some were waiting for patients to say they were ready, while others felt that they were not equipped to lead the discussions themselves. While palliative and hospice teams are often seen as the experts in end-of-life discussions, the responsibility for these discussions is shared. At their core, these are conversations about goals and values. When framed that way, they become more approachable for both patients and clinicians.
Another misconception is that there simply is not enough time during a visit to address end of life planning. Anyone who has worked in primary care understands the challenge of limited time within the appointment. But these conversations do not need to be lengthy. They also do not need to occur in a single visit. Clinicians can begin with a simple question: “I was hoping we could talk a little about your goals in case there came a time when you could not make decisions for yourself.” From there, some foundational questions can be explored: who would serve as a surrogate decision-maker, what types of interventions the patient would or would not want, and how they wish their body to be cared for after death, including organ donation. These discussions frequently can unfold over two or three brief visits. What matters most is our willingness to normalize and prioritize them.
Despite the documented benefits of advance care planning and strengthened communication between patient and clinician, barriers remain. Many clinicians report lack of training or confidence in initiating end-of-life discussions, time constraints that reduce opportunities for discussion, and concerns about disrupting the clinician-patient relationship. Yet, when these conversations occur, they contribute to greater alignment of care with patient values and help prevent crisis-driven decision-making that may not reflect what patients would choose.
So, the question becomes this: have you had these conversations with your patients? And if not, what are you waiting for?
Author Biography:
Dr. Erin Jenkins is a certified Family and Psychiatric Nurse Practitioner with 23 years of experience in critical care, family medicine, neurosurgery, and palliative medicine. She owns Your Full Potential Psychiatry & Wellness in Southern Nevada, where she helps people improve their overall wellbeing using integrative medicine. Dr. Jenkins also serves as an Advanced Practice Registered Nurse in the U.S. Air Force Reserve, working in base operational medicine and focusing on military psychiatry. Learn more at https://www.yfpwellness.com and connect with her on LinkedIn at https://www.linkedin.com/in/erinjenkinshealth .
References:
Auriemma, C. L., Halpern, S. D., Asch, D. A., Van Der Tuyn, M., & Asch, J. M. (2020). Completion of advance directives and documented care preferences during the Coronavirus Disease 2019 (COVID-19) pandemic. JAMA Network Open, 3(7). Access link here
Malhotra, C., et al. (2022). What is the evidence for efficacy of advance care planning … BMJ Open, 12(7). Access link here
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