Dad and the “Other Side of the Bed”

Mike’s father Allyn Wiechart loved this photo of the two at a tailgating party prior a University of Kentucky football game.

Mike’s father Allyn Wiechart (left) loved this photo of the two at a tailgating party prior to a Tennessee Titans football game.

June 12, 2014. Last month, in honor of Mother’s Day and National Nurses Week, I shared a story about an early career-defining moment involving my mother, a long-time nurse, and how one particular interaction helped put my job as a healthcare administrator into perspective. This time around, in honor of Father’s Day, I thought I would share a much more recent experience with my Dad that has been equally influential in framing my views since I was able to experience healthcare from the “other side of the bed.”

My Dad died a little over three years ago after an extended battle with esophageal and later metastatic brain cancer. We were privileged to be able to care for my Dad during the last six months of his life. He and my step-mother moved into our guest bedroom downstairs and my recently renovated and treasured “man cave” got repurposed into an impromptu medical ward complete with all manner of DME, which included several lifting chairs, wheelchairs, specialty beds and IV feeding poles.

Caring for a loved one in the final days of their battle with a ravaging disease like brain cancer is emotionally draining, mentally fatiguing, at times physically challenging (as in lifting a 280-pound man into bed), and ultimately life-changing.

On a personal level, the first thing that changed for me was my hang-up about modesty. Caring for a family member like this certainly presents challenges to human dignity for both the caregiver and loved one. Simple things like helping them with bathroom duties, such as bathing and catheter maintenance, challenge the limits of personal dignity. I can tell you as much as I didn’t love it, as an intensely private and self-reliant person, Dad absolutely hated it. We didn’t make a lot of eye contact during those early times but that unspoken “awkwardness” that lingered between us finally gave away when one day I fumbled the urine container, making a mess on both of us, and we both started laughing at my incompetence. (For the record, I still don’t think it was THAT funny… but whatever.)

I recall thinking that caregivers do this stuff all the time with arguably much less at stake (i.e. direct care of a loved one), and yet think nothing of it… it’s just part of the job. As a non-clinician, experiencing that reinforced the fact that healthcare is not simply about policies and procedures, technology, and fiscal challenges, but is still all about how we interact with others, demonstrate compassion and help patients maintain dignity.

On a professional level, the experience from the “other side of the bed” was eye-opening – in both good and not-so-good ways. Starting with the not-so-good, I experienced first-hand the inherent flaws of a system built on fee-for-service care and potentially misaligned incentives between providers and patients. One of Dad’s doctors (outside of Nashville) failed us, not because he was a bad physician, but because he was never once willing to be straight up about the prognosis which even I knew was fairly bleak once the cancer had metastasized.

Dad desperately wanted to live and this physician more than obliged Dad’s need for hope by enthusiastically acquiescing to his demands for the “kitchen sink” approach to curing his cancer – as unlikely and unrealistic as that was. I distinctly remember questioning the efficacy of Dad requesting yet another PET/CT scan just two weeks after the last one, and it being ordered without hesitation, even knowing it was not going to show anything different or change treatment recommendations.

As further evidence of a broken system, another family member further rationalized it with the statement that “he paid into Medicare for over 40 years and it’s his right to get the care he wants.” When it comes to end-of-life care, clearly there is a fine line between providing hope and facing reality. Looking back, what we really needed was the doctor to be honest with us – all of us – more than anything.

On the positive side, there were two moments in the journey that reaffirmed my faith in both humanity and healthcare in general. First, I will never forget one physician, a radiation oncologist with Saint Thomas Health who, after my Dad had an extended seizure and ended up in the hospital for four days, was the first person to finally level with Dad and our family about the prognosis. Showing compassion, truthfulness and patience that was surely divine-gifted, with the entire family present, the physician shared the sad news that Dad had four to six months to live. As much as it hurt to hear it, I still cannot thank him enough for caring enough to say it.

The other moment I distinctly recall was when Dad was to undergo a gamma knife procedure at Vanderbilt Cancer Center. Dad had told me going into the procedure that he really wanted me there when he came out of recovery, knowing that his “eggs would be a little scrambled” (Dad’s words, not mine). It was scheduled for the same day as our monthly hospital leadership conference call which, of course, went long. After a stressful thirty-five minute drive from Franklin to the labyrinth known as Vanderbilt Medical Center campus, I was completely beside myself, arriving just 5 minutes before Dad was to leave recovery.

As I finally pulled in exasperated, a young man in valet parking approached my truck, opened my door and said: “Sir, my name is ____. I know you are here to see a loved one and I want to let you know that everything is going to be alright because your family member is getting care in the greatest cancer center in the world with the absolute best doctors and nurses. And don’t you worry about parking as I am going to take care of your truck, so just leave me the keys and I will handle this for you and have it waiting for you when you’re ready.”

I was aware that Vanderbilt was a Studer Group partner, as is Capella, and that this young man had likely been coached (i.e. scripted) in “AIDET.” Knowing it was scripted didn’t matter. What mattered was how and when he said it. He believed every word he said, and as he sensed my anxiety, he knew exactly what I needed. The Studer techniques that this young man had mastered simply refined his already innate capacity for human compassion and care. And, even though I knew exactly what he was doing, it was because of his delivery and attitude that every ounce of tension and panic immediately left me and suddenly it was going to be okay.

Now, as they say, here’s the rest of the story.

That young man who parked my truck that day had an obvious disability, immediately noticeable by his facial features and speech. Yet he was the one person I remember most out of all the medical personnel we encountered along Dad’s journey … not a highly credentialed clinician but someone who considered parking cars his calling and those scripted words his healing instruments. His gift to me that day – one of reassurance and comfort – is one I will never forget.

The perspective I gained from the “other side of the bed” taught me some valuable lessons and significantly impacted my views as a healthcare leader.

First, there are significant opportunities for us to improve how we provide end-of-life care – improvements that can benefit our society as a whole, but more importantly, will better serve patients and their families. As our healthcare system transitions from one based on volume to one based on value, it will help us make these difficult decisions.

Secondly, and more importantly for all healthcare workers, words really do matter. Everyone – regardless of the perceived significance of their role – can provide healing and comfort when it is needed most.

 

P.S.  Dad, Happy Father’s Day! I miss you and I will see you again soon.

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6 thoughts on “Dad and the “Other Side of the Bed”

  1. Michael – a touching recount of probably the most important and meaningful experience of your life.
    I’ve been a Pulmonary/Critical Care physician for >20 years, and I’ve tried to model myself after your parking lot attendant. Now, I’ve recently retired my clinical practice and developed a service that will help us to care for seniors better, and I still try to model myself after your parking lot attendant.
    Lessons from the other side of the bed – much to be learned.
    Best wishes.
    Steven Fuller

  2. It is a lot easier not to share such personal and painful memories, but people from all walks of life can benefit in many different ways by reading this. I appreciate you sharing this and as a Studer Group employee, I have great pride that your anxiety was lessened by one of our tactics to do just that, alleviate anxiety.
    Thanks.

  3. Deborah A Campbell says:

    Thank you for sharing your fathers journey. As someone who recently lost my mother, I was very moved by your story. Roles are truly reversed when you have to care for your parent the same way they cared for you when you were born. Modesty is not possible and trying to preserve their dignity is crucial.

    End of life care is VERY important and unfortunately no one thinks about how important and difficult it is until the family is faced with it. It takes very special nurses and care givers to have the compassion that is needed for this difficult journey for any terminal patient. My family was blessed with a wonderful Hospice team.

  4. flora owens says:

    i do appreciate your honesty and humility about your life lessons. thank you for appreciating nurses and what impact we have in healing the afflicted and the sick. it’s both profession and a calling for those of us who went into nursing without thinking about monetary remunerations ( and later found out the reality that it’s not for the faint hearted ).after44 years in nursing still my prayer is for the Good Lord to help me keep my passion fired up in my chosen career and calling until it’s time to say farewell.

  5. Belinda Farmer says:

    Thank you for sharing both the excellent and the less than stellar attributes of your Father’s cancer journey. As an Oncology Director, I believe it is imperitive to a patient’s care path to have only individuals with both compassionate concern and honest integrity involved with each case. This applies to Physicians, clinical and non-clinical staff members. Personally, my decisions always fall back to “how would I want my family member to be treated”? With dignity and respect at all times.

  6. Andy j lyons says:

    that was truly an amazeing story . and very true indeed. thank you for shareing mr.mike . thanks again andy j lyons evs lead tech eastar east muskogee

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