Physician Spotlight: Susan Nelson, MD

“My dad died in pain on his 66th birthday. I vowed that no one should ever be allowed to suffer as he did,” Dr. Susan Nelson, palliative, geriatric, and hospice care specialist, recalls.

From the Latin word “cloak,” palliative care is intended to comfort, not necessarily cure. Commonly, many misperceive palliative care as medical care that helps patients with how to die.  

“Actually, our goal with palliative care focuses on helping patients with how to live… and live life to the fullest, as they see it,” affirms Nelson.  

One in every two Americans has at least one chronic disease (CDC, Boersma, 2020).  The US has the highest disease rates among comparable countries, and the gap is widening.

“My dad spent his final days in a chair and couldn’t move. He was not given ample pain relief. It was then I became a huge advocate. I knew that in my career I wanted no one to suffer, and that we needed more attention to making sure patients had as many good days as possible,” Nelson added.

Diagnosing and managing patients with chronic illness, as well as supporting their well-being, hopes fears and dreams, should be discussed in the context of how we can help make life better.

“As palliative care clinicians, we infuse more evidenced-based tools into how we care for, and talk to, those with chronic disease and illness.”

On the bright side…

“Visiting the palliative care specialist was the single most helpful, cathartic and thorough physician visit my dad and I had ever participated in during his 20-year battle with Parkinson’s, and now, Lewy Body dementia,” shared Nicole Kleinpeter, daughter of end-stage Parkinson’s patient Ron Boudreaux. The doctor asked and answered raw-and-real questions that addressed Dad’s fears, worries, and wishes.

Nelson, practicing geriatric medicine now 35 years, likens the evolution of the palliative care field to more than clinical medicine. She acknowledges that the distress of chronic disease and illness requires spiritual as well as psychosocial nurturing.

“Daddy’s biggest fear following his diagnosis was that he would die from choking or suffocating,” Kleinpeter added candidly. His doctor talked in detail about many scenarios, and the approaches and medicines that could help ease his discomfort, suffering and anxiety.  She also addressed his goals, what made him happy, and the bucket list items that would give him a fulfilling life, despite terminal illness on the horizon.  

“The visit addressed so much more than clinical topics,” Kleinpeter pointed out.

Through tears and laughter, they discussed and planned parts of Dad’s life that had nothing to do with medical care, and everything to do with his social and emotional well-being.  

“Perhaps that made the most impact for us and changed our mindset around how we navigated the next two (and very full) decades.”  

Kleinpeter’ s father, though now in end stages, played tennis, traveled the world, played with his grandchildren, did Tai-chi, Pilates and boxed until about two years ago. He lived long enough to receive the lifetime achievement award last year from the Louisiana Psychological Association for his research, training, and programs that “put child and family mental health services on the map” for underprivileged children in schools and communities throughout the state.

As for Nelson, she admits that she does not often get burned out.  Her work in making patients’ and families’ live better is what “keeps her going.” “Making any symptoms better –whether pain, psychosocial or spiritual distress – is rewarding.”

In a recent blog, Nelson wrote:

While palliative care is a relatively “new” specialty, the principles are not. We are a whole team made up of many disciplines, who provide an extra layer of support for people with serious illness and their families. The goal of this type of care is to manage pain and other symptoms, navigate the many confusing aspects of the health care system and to have conversations about what makes life enjoyable to develop a specific plan! We want our patients to have the best quality of life that is possible.

If you get to know Nelson, she seems to walk her own talk. She lauds her mother for insisting that “can’t” cannot be found in the dictionary! She emphasizes “making memories, not buying things, spending time with good friends, and enjoying family.”

In her spare time, perhaps due to a promise to her mother and idol, Nelson reads at least one book a month. Right now, she’s reading Confederacy of Dunces and a new book by Siddhartha Mukherjee The Song of the Cell: An Exploration of Medicine.

She and her husband Robert Hart, MD, Ochsner Health Chief Physician Executive and President of Ochsner Clinic, have two sons – Nicholas, a civil engineer, and Geoffrey, doctoral student of physical therapy. One daughter-in-law is completing a cardiovascular anesthesia fellowship in Houston while the other teaches in Luxembourg.

In addition to incorporating Nelson’s wisdom into practice, perhaps we can all reflect while listening to Tim McGraw’s country hit again from 2004 “Live Like You Were Dyin” (lyrics below).  It must have been the longest running #1 country song that year for good reason.  

For more tools on how to talk plainly to patients and families about palliative care, check out this podcast.

"Live Like You Were Dyin'"

Lyrics by Tim Nichols and Craig Wiseman

‍

He said, "I was in my early 40s,

With a lot of life before me,

And a moment came that stopped me on a dime.

I spent most of the next days

Lookin' at the X-rays,

Talkin' 'bout the options

And talkin' 'bout sweet time."

I asked him, "When it sank in that this might really be the real end,

How's it hit you, when you get that kind of news?"

Man what'd you do?"

And he said,

"I went sky divin',

I went rocky mountain climbin',

I went 2.7 seconds on a bull named Fumanchu.

And I loved deeper,

And I spoke sweeter,

And I gave forgiveness I'd been denying."

And he said, "Someday I hope you get the chance

To live like you were dying."

He said, "I was finally the husband

That most the time I wasn't,

And I became a friend a friend would like to have.

And all of a sudden goin' fishing

Wasn't such an imposition.

And I went three times that year I lost my dad.

Well I finally read the good book,

And I took a good long hard look

At what I'd do if I could do it all again.

And then...

I went sky divin',

I went rocky mountain climbin',

I went 2.7seconds on a bull named Fumanchu.

And I loved deeper,

And I spoke sweeter,

And I gave forgiveness I'd been denying."

And he said, "Someday I hope you get the chance

To live like you were dying."