Hard truths and lessons learned while watching my father die

As health insurance professionals, we often think we understand the intricacies of healthcare. A personal experience has shown me just how wrong I was. On December 7, 2023, my father passed away after a traumatic fall on November 28. This short, 10-day journey revealed just how little I knew about hospital systems and the vital role of advocacy.

Hospital systems are fundamentally designed to preserve life, often at the expense of respecting a patient's wishes. Despite having all the necessary legal documents, including a medical power of attorney and a notarized do-not-resuscitate (DNR) order, I found myself repeatedly fighting to honor my father's wishes. His adamant refusal to be put on a ventilator was a constant battle, even with a DNR bracelet.

Doctors, particularly trauma specialists and intensivists, operate on tight schedules, often prioritizing efficiency over family engagement. It was a struggle to get clear, direct answers about my father's condition. I had to be persistent — frankly, I became a pissed-off Mama Grizzly Bear — standing in the middle of rounds to hear what was being said, following doctors down the hallway, and asking pointed questions to ensure I understood his health status.

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Charge nurses play a crucial role in hospital administration but often act as gatekeepers between families and doctors. They are essential for the smooth operation of the ward but can advertently or inadvertently hinder family members trying to advocate for their loved ones. Understanding their role is crucial for anyone navigating hospital care.

As overworked angels, nurses are often the most compassionate caregivers, but their workload and the system's constraints can lead to guarded communication. I repeatedly encountered vague responses to my direct questions about my father's condition. The only answer I got was, "Your father is a very sick man." Really???? I think I got that part. I saw really compassionate care throughout the Trauma Wing… I didn't hear a lot of honest conversations about what was happening. 

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Having a nurse in the family and a dear friend with medical expertise was invaluable. They provided guidance on what questions to ask and how to interpret critical health metrics like blood urea nitrogen levels, white blood count and creatinine levels. Most importantly, each pointed out the inflection points. The "here is where we are and this situation will go this way or that way. Get prepared… make sure to ask this…" Such support was crucial in advocating effectively for my father.

During this incredibly difficult time, my team of unseen heroes stepped up in ways for which I will forever be grateful. They took over all my professional responsibilities, ensuring I was kept out of my email and off the phone so I could focus entirely on my father. They constantly checked on me, making sure I had everything I needed, from meals to emotional support. Their dedication allowed me to be fully present for my father during his final days, underscoring the importance of a strong, supportive team in times of personal crisis.

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As benefit advisers, our responsibility is knowing and advocating for the employee populations we serve. These are the key takeaways from my experience that could help others:

1. Know end-of-life wishes: People need to understand and document their loved ones' — and their own — preferences for end-of-life care. Legal documents should be accessible and known to the designated advocate.
2. Designate an advocate: In larger families, a decision is needed about who will be the advocate and that individual should be fully supported. This role is essential in ensuring that a loved one's wishes are respected. I am so fortunate to have had family members stand at that bedside with me and support some very difficult decisions.
3. Ask questions and stand firm: Don't be intimidated by medical professionals. People have a right to clear information and to make decisions about care. If anyone needs to be a pissed-off grizzly bear, then I gladly give them permission to be that!
4. Communicate clearly with medical staff: Make sure medical staff understand and respect the family's decisions. They have the final say in the care provided.
5. Ask for help: I thought I didn't need help – except for the medical help I asked for. I was wrong here, too. I should have asked for more. So many people offered support. My standard answer was that I was fine. I was in no way fine.
6. Offer support: I couldn't have gotten through those days with my dad or the following months without the support of my team. If you lead a team, rely on them now. And let them know they can rely on you when they face this situation.

Advocating for my father was the hardest thing I have ever done, but it was also a final act of love and service. I hope sharing this experience helps you and your clients navigate similar challenges with greater preparedness and resolve. Our roles as HR and benefit professionals uniquely position us to understand and assist others through these difficult times. Advocacy is an honor and a profound act of compassion.