By Milly Jack
I arrived early to visit my mother in the ICU, expecting a quiet morning but instead walked into a moment that shook me deeply. My mother was meeting with an oncology consultant and a PA from her oncology specialist's group. As I entered, I was stunned by the consultant's blunt declaration: "You are going to die." My mother's reaction was one of numbness; her eyes drooped, her expression blank, seemingly in an altered mental state. The consultant justified his directness by saying, "Well, your mom told me to give it to her straight. I told her just as I would tell my own mom." Despite his insistence, it felt jarringly insensitive.
Further compounding the shock, the consultant made assumptions about the origin of her cancer, claiming it started in the female genital system. However, I knew this to be incorrect, as I had read the pathology report in my mother's MyChart which stated the tumor was poorly differentiated—its source unknown, indicating it had likely been developing for years.
After delivering such stark news, the consultant awkwardly hugged me, a gesture that felt inappropriate, and then he left. Just three days later, my mother passed away. The rapid progression left me reeling with questions.
A palliative care doctor visited shortly after, and while I expressed a desire for my mother to be comfortable and free from pain, the treatment plan seemed to equate administering pain relief with the withdrawal of life support—a trade-off that was never clearly communicated to me. My mother, who had chronic pain from previous back surgeries and was now facing a large, aggressive tumor, had initially been given only Tylenol, despite the severity of her condition.
The palliative care team repeatedly assured me they would administer proper medication, yet the discussions about transitioning her from the BiPAP machine to a less invasive oxygen cannula and stopping all life-sustaining medications happened without my full understanding or consent. I noticed they had even removed the DVT sleeves from her legs without discussing it with me.
This lack of clear communication was deeply troubling. My mother had a living will explicitly stating she did not want to be on life support, but with her compromised mental state, it was unclear if appropriate discussions or agreements had taken place. While most of the ICU nurses were wonderful, the final nurse, the one responsible for administering pain medication every 15 minutes, during my mother’s “transitioning off the BiPap machine” marked a stark difference in care. Every 15 minutes my mother transcended closer and closer to death. Finally, the nurse came to give my mother medicine for her “throat gurgling.'' My mother passed within 5 minutes. That final visit from the nurse left me with unresolved feelings about the entire experience.
Twenty-four hours after my mother's passing, I tried to access her MyChart to gather more information and noticed it had been flagged for multiple incorrect password attempts. I hadn't attempted to access the account myself, which raised immediate concerns. Despite this unsettling discovery, the pressing question remained: what comes next?
While I believe that my mother's final wishes were ultimately respected, the process felt overly mechanized, as if the medical team was following a routine too rigorously. This experience left me pondering the safeguards in place for ensuring that a patient’s wishes are genuinely prioritized when they may not always align seamlessly with hospital protocols.
Moving forward, it's crucial for patients and families to take proactive steps. Ensuring clear and documented communication about end-of-life wishes is essential. It’s also beneficial to regularly review and discuss these plans with healthcare providers and to have a trusted advocate who understands these wishes and can act on your behalf. Engaging in open dialogues with care teams and asking for meetings to clarify treatment plans can help in maintaining transparency and making informed decisions.
Additionally, for peace of mind and to safeguard one’s interests, it might be wise to consult with a healthcare attorney who can provide guidance on legal rights and protections, especially when unusual activities like the security concerns with MyChart occur. This can ensure that any potential discrepancies or procedural oversights are addressed promptly and effectively, honoring the patient’s true intentions.
Four days before my mother’s death, she was sitting up in her hospital bed playing a card game called Phase 10, beating everyone the way she always did. Her cognition was clearly intact, and only altered when deprived of oxygen. I have peace knowing my mother’s wishes, but the questions that linger leave me hollow. Rather than hold on to this emptiness, I opted to warn others so others can be informed and aware.