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Many of us get uncomfortable talking or even thinking about serious illness and dying. But for Randy Curtis, MD, MPH, a palliative and critical care specialist and director of the Cambia Palliative Care Center of Excellence at UW Medicine, it’s part of his every day. He has dedicated his career to researching palliative care methods and ensuring patients get the best care. And now he’s facing his own serious medical diagnosis.

He started noticing slurring of his speech in January 2021; two months later, he was diagnosed with amyotrophic lateral sclerosis (ALS). It’s more than a little eerie, how he has cared for many patients with the disease that he now has.

“As a physician, I knew instantly what this diagnosis meant and I was shocked,” he says.

ALS is a neurodegenerative disease affecting the spinal cord and brain neurons. It used to be called Lou Gehrig’s disease after the famous baseball player whose early onset made headlines worldwide. ALS can affect anyone, though there is a specific, rarer type that runs in families. No one knows exactly what causes most cases of ALS. The disease progresses over time: Most people live two to five years after diagnosis, on average.

But focusing only on the end does a disservice to people with ALS and other serious medical conditions, Curtis says. Instead, it’s important to recognize what people can contribute and experience no matter how much time they have left. This perspective is at the heart of how Curtis sees the role of palliative care in patients’ lives: reducing physical, emotional and spiritual suffering.

“I don’t feel that palliative care is associated with dying. It’s associated with serious illness and with having the best living that you can while you have serious illness,” he told KING-5 News in a recent interview.

Recognizing the necessity of palliative care

Palliative care is now recognized as an important aspect of patient care, but back when Curtis was in medical school, that wasn’t the case.

This was at Johns Hopkins in the late 1980s, in the middle of the HIV epidemic when getting infected was still considered a death sentence. Curtis helped care for young men who were dying from HIV’s progression to AIDS.

“I witnessed occasional outstanding end-of-life care, but I also witnessed end-of-life care that was often terrible, providing inadequate support for these young men and their families and friends,” he says.

After that experience, he became determined to focus his career on palliative care and learn how to better reduce suffering in patients.

“When I started in pulmonary and critical care doing palliative care research, I spent a lot of my time trying to convince others that palliative care was important in the ICU setting. Now, 30 years later, it is widely recognized as being very important. I didn’t do that by myself obviously, but I’m very proud of the role I played in changing the culture of intensive care medicine, through my research, teaching and national leadership,” he says.

He cites his election as the President of the American Thoracic Society from 2009-2010 as testament to the progress that has been made. But that is only one of his many accomplishments. Others include being chosen as the A. Bruce Montgomery – American Lung Association Endowed Chair in Pulmonary & Critical Care Medicine; receiving awards from the American Academy of Hospice and Palliative Medicine, the American Thoracic Society, the Society of Critical Care Medicine, and others; and, of course, leading the work being done at the Cambia Palliative Care Center of Excellence, which was established in 2012 to integrate research, education and care for people of all ages with serious illness.

Why mentoring matters

Awards and recognitions are great, of course, but for Curtis they don’t compare to the reward of being a mentor.

“Before my diagnosis, I used to think of my legacy as the papers I had published and the impact that my research has had on the field of medicine. Since my diagnosis, my thinking has changed. I now see my legacy as the people I have mentored and helped mentor and the people that they have mentored. This vision of legacy gives me much more joy and happiness than my old vision of legacy,” he says.

To Curtis, it’s important to recognize also that palliative care isn’t just done by specialists. He distinguishes between what he calls “primary palliative care” that is provided by all doctors, nurses and medical professionals and “specialty palliative care” which is provided by people who have additional training in and knowledge of palliative and critical care.

This makes mentoring in palliative care even more important because it touches anyone who practices medicine and cares for patients.

“I firmly believe that we need both primary and specialty palliative care to provide the best care for all patients and their families. We need primary palliative care because there will never be enough specialists to see all patients with serious illness. We also need the specialists for those situations when patients or their family members have unmet palliative care needs despite primary palliative care,” he explains.

He is still mentoring and conducting research and enjoying both; he intends to continue this way until ALS makes it too difficult. But he knows that, when that time comes, he will have a new generation to turn his work over to, people who will then become mentors themselves.

Moving forward

Being a palliative care doctor has helped Curtis come to terms with his diagnosis from an intellectual perspective, in that he knows what to expect and knows what his treatment options are. He’s seen it before, after all, having cared for many patients with ALS.

What his medical knowledge and experience couldn’t prepare him for, however, are his emotional responses. He has bad days dealing with sadness and grief, days where he’s focused on figuring out how to provide support for his family, and days where he simply focuses on being alive and enjoying what he can.

Professionally, he is enjoying his work and mentoring and looks forward to continued growth at the Cambia Palliative Care Center of Excellence, where he and the team just named Erin Kross, MD, a specialist in critical, pulmonary and palliative care, as the new co-director.

“I’m confident that she will create her own vision when she becomes director and she and the Center will do great things,” he says.

In his personal life, Curtis is finding meaning in spending time with his wife Amy and daughter Alice. He likes to cook for them, to take walks on the beach with Amy and go skiing with Alice. He’s still going running, which is something he truly enjoys.

In short, he’s doing the best living that he can.