In the past four months, I spent most of my time and energy advocating for my elderly father across a variety of healthcare facilities. He passed away during August, and while it was merciful for him, we’re left with a gigantic hole in our family and hearts.

There’s also a mix of personal guilt plus frustration, and anger at much of the healthcare management, leadership, and delivery we encountered along the way. With one institutional exception, the process was nightmarish. For that one institution, they are exemplars of quality leadership, good management, and great care.

After speaking with others who have faced similar situations, I realize I’m not alone in my feelings and perspectives.

Personal Hindsight and Second-Guessing

First, the guilt. When caring for and advocating for a loved one, it’s easy to second-guess yourself when things don’t go well. Should I have shifted facilities? Was it a mistake to OK this treatment? What if I had spent every night for three months sleeping in his room? Could I have changed the outcome?

As family members who are not medically trained, we do our best in stressful situations. I found myself constantly cross-checking with the various doctors and striving to understand the whole picture, ensuring their recommendations were in the best interest of my dad. It’s an uncomfortable role, however, when your instinct tells you that no one is looking at the whole situation; you have to step up, medical degree or not. Thankfully, my questions were mostly met with respectful consideration.

This was exhausting and I was way out of my zone of competence. I had to facilitate their competence. Weird role.

I’ve reconciled that I did everything I could for Dad. I investigated, communicated with everyone, sorted through the issues, and made informed decisions for him. I left everything I had out there on the field. I still failed. What if I had transported him to the Mayo Clinic? Could we have extended his life and added a little quality to it? Given his overall issues, it is likely that the answer on the quality side is ‘no.’ Still, …

Frustration and Anger

This situation wasn’t my first rodeo in advocating for a loved one through medical crises and care across several institutions. Having lived through a serious experience with our son to a positive outcome several years ago, I was familiar with the realities and complexities faced by healthcare professionals. I also understood that every patient needs an advocate with a calm voice, clear thinking, and someone who engages with healthcare professionals with empathy and kindness. I have an appreciation for the complexity and sometimes thanklessness of their challenging jobs.

Here, in no order, are some of the leadership and management failings we encountered.

Over-taxed, under-staffed institutions where the nurses and technicians struggle to deal with the demand for their time.

This deliberate under-staffing seems primarily driven by costs and partially by the limited supply of qualified professionals. While not privy to the decisions behind closed doors that determine staffing levels, the nurse and technician to patient ratios highlight the problem. Anyone who has spent weeks where the press of a call button for an urgent situation brings no or low response, and when you run into a hall only to realize there’s no one around, sees these factors at work.

This situation manifested in what ultimately contributed to ending my Dad’s life — complications from a hip fracture that occurred when the nurses and technicians failed to respond to a prolonged bed alarm from someone who was a known fall risk.

Role distortion

During our month in a so-called Skilled Nursing Facility, we quickly realized there was little nursing or nurse involvement. Thank goodness for the technicians who graciously and willingly help patients navigate the indignities of using bathrooms and bathing. Shame on the institutional structure that reduces the very few nurses available to pill dispensers only. Double shame in instances where we sought nurse input, only to be met with an attitude. (Reiterate, I operate with honey, not vinegar. The ‘not my job’ attitude that came from a couple of the nurses should disqualify them from serving.)

The lack of a coherent, shared strategy

At one point, Dad had seven different doctors and multiple therapists. While most of the doctors were empathetic and willing to answer my questions, it was clear there was no shared strategy for dealing with his situation. We were left to interpolate between perspectives and then push for clarity and focused action. This issue above all was the most significant point of failure. Shame on the leadership and management who allow this system to prevail. (And, no, the “hospitalist” band-aid doesn’t work.)

Lack of values on display

Among all institutions, healthcare organizations should lead the way in embracing patient- and family-centric values. Values are more than framed artwork hanging on a wall. They must live encounter by encounter. While many individuals we engaged with, including those below the doctor, nurse, and administrator levels, were outstanding — true angels on earth — the lack of values reinforcement and execution from those who impact our loved ones is appalling and a failure of leadership.

The Exception — values based leadership, caring, competence, and love on display

While not naming the institutions that generated the frustration and angst above, I have no qualms highlighting Woodside Lutheran Home in Green Bay, Wisconsin, as an exemplar of all that is good in our healthcare system.

Leadership at Woodside is invested in its patients and patient families

The doctors supporting patients reflect the care and approach I’ve encountered only at the Mayo Clinic. Dad’s new primary physician spent literally hours reviewing his case, engaging with me, and striving to identify the right approaches for him.

At every encounter, leadership focused on Dad and on alleviating our family’s burden. It’s hard to describe how crucial their approach was in helping us cope with and navigate this situation.

Care Coordination and Values all on display at every encounter

It was a community of professionals who developed a shared view of his situation and delivered exemplary support and coordination.
Staffing levels are excellent, and the positive, caring, and helpful attitudes displayed by everyone we encountered were what we all hope for in caring for our loved ones. They made me feel cared for along the way. The values were on display constantly.

The Bottom-Line for Now

I’m slowly shifting from mourning to celebrating my dad’s life. Soon, I will share the leadership lessons I gained from this man, who grew up in an orphanage, dropped out of high school to earn money to survive, and took a frontline factory job at 18, only to walk out the door as president of the company at retirement. That’s a story worth celebrating. Woodside is a leadership and management story worth celebrating.

Art's Signature