Championing Comprehensive Care: The Heart of Patient and Family Advocacy

In my textbook, The Arc of Conversation: A How-to Guide for Goals of Care Conversations, I share my profound commitment to comprehensive care that honors and respects the wishes, concerns, and autonomy of patients and their families. This passion is deeply rooted in personal experiences that underscore the essence of humane medical care and the necessity of truly listening to those we serve.

Recently, I encountered a heart-wrenching situation involving my uncle, who was battling advanced lung disease. He found himself ensnared in a web of fragmented care, juggling appointments with various specialists: pulmonologists, oncologists, and primary care physicians. While the focus was largely on managing his cancer, the lung disease—the primary cause of his decline—remained largely unaddressed. When my aunt reached out in distress, bewildered by the oncologist’s relentless pursuit of treatment unrelated to my uncle’s immediate needs, I felt the burden of the situation keenly. It was a stark reminder of a healthcare system that often sidelines the very individuals it is designed to serve.

During our conversation, it became evident that my aunt understood her husband’s time was limited, yet discussions about their end-of-life wishes had been sidelined. She recounted an unsettling consultation with the oncology team where her inquiry about the purpose of ongoing treatments was met with dismissal. In the search for hope, my uncle had understandably agreed to continue treatment. However, my aunt needed clarity—“Who will tell us when it’s time for hospice?” she asked. I recognized this as the wrong question. It should never be left to doctors alone to decide when a patient should enter hospice care; that decision belongs to the patient and their family, arising from compassionate conversations that facilitate an exploration of their values, wishes, and concerns.

It was painfully clear that if none of my uncle’s specialists had initiated discussions about hospice up to that point, they likely wouldn’t until it was too late—when my uncle was near death, possibly hospitalized with pneumonia or respiratory failure, or even reliant on a ventilator. My uncle had, in fact, qualified for hospice care for several months, yet the pivotal conversation was never broached.

Both my aunt and uncle endured months of unnecessary suffering without the vital support hospice care could have provided—not just in terms of comfort but also in preserving dignity in his final weeks. By the time my aunt reached out to me, she was emotionally drained, filled with anticipatory grief and worry. As I processed their situation, my frustration mounted. How could a medical community—so often revered—so blatantly overlook the needs and desires of patients and their families? I felt furious, not just for my loved ones but for countless others facing similarly distressing circumstances.

I worked closely with my aunt, helping her find the strength to make the difficult decision to transition my uncle to hospice care. Despite being a capable physician herself, she needed practical guidance and an overarching understanding of her husband’s situation to empower her in making what would become one of the most significant decisions of their lives.

This type of systemic failure is not an isolated incident. Throughout my career, I have encountered numerous patients with complex oncology, pulmonology, and cardiology issues. Many enter consultations without understanding their disease trajectory or being informed about hospice care until it’s far too late. A few months ago, a patient relayed to me that their oncologist dismissed the idea of their decline by saying, “Oh, Amy’s always telling patients they’re dying,” after we discussed the natural progression toward the end of life. Tragically, that patient passed away shortly after that, following the decline I had discussed in our visit: weight loss, reduced mobility, a fall, a hip fracture, and ultimately, a transition to hospice care.

I recall another patient with advanced organ failure whose experience mirrored my uncle’s. They were subjected to aggressive cancer treatments despite having severe lung disease, which compromised their ability to tolerate such interventions. Unfortunately, neither the oncology nor the pulmonology teams addressed how these treatments would affect the patient’s quality of life. The aggressive therapies overwhelmed their body, significantly diminishing their overall well-being. Regretting their decision to pursue cancer treatment, the patient expressed bitterness and frustration toward a healthcare system that made them feel more like a number and a profit-potential than a unique individual deserving of compassion and respect.

As healthcare advocates, every physician is responsible for bridging the communication gap between patients, families, and providers. Discussions about end-of-life care, hospice options, and a holistic discussion of a patient’s condition should be prioritized and normalized rather than allowing these conversations to be relegated to whispers in a clinician’s office—or to a palliative care consultation. Moreover, such discussions shouldn’t be postponed until the very end. Patients and families should be prepared in advance to understand the disease trajectory they are experiencing, what will happen at the end of life, and the approach, philosophy, costs, locations, and options related to hospice care.

Ultimately, we should aim to cultivate a healthcare environment where patient and family values take precedence—where empathy and understanding guide treatment plans. We must strive for a system that respects the voices of those it serves—a system that champions not just the science of medicine but the art of compassion. It is time to elevate patient and family care, transforming it into a fundamental cornerstone of our healthcare paradigm.

My mission is to provide comprehensive and holistic care and create a safe space for open conversations that honor the voices of patients and their loved ones. I take this approach to caring for my patients and families, empowering them to make the choices that are right for them. Through this commitment to comprehensive care, I strive to ensure that no one feels lost in the system. My goal is to foster an environment where dignity and respect guide every decision and conversation, ultimately transforming the healthcare experience for all involved. Patients and families deserve nothing less.