Strategic integration of palliative care services into the fabric of patient care at Hoag
When Chet Rockwell first walked into Hoag’s Palliative Care Program to meet Program Director Vincent Nguyen, MD, and Mona El-Kurd, a licensed clinical social worker, he says he knew right away he was in a different place. Chet will be the first one to tell you that he is the healthiest looking sick person you’ve ever met. What you won’t see when you look at Chet is the extreme muscle and nerve pain, exhaustion and weakness that has plagued him since the age of fifteen. He waited almost twenty-five years for a diagnosis, then another three for doctors to finally see the person behind his symptoms—the gift he feels Dr. Nguyen, Mona and the Hoag Palliative Care team gave him.
Unlike hospice, which is a program of care for the terminally ill, palliative care is a specialty that optimizes life for people living with a serious illness by relieving symptoms and stress from their illness through medical management and emotional support. Chet’s genetic condition—a rare metabolic one called very long-chain acyl-CoA dehydrogenase deficiency, or VLCAD—is chronic and qualifies him for palliative care. VLCAD prevents Chet’s body from breaking down fats, and without proper energy sources, the body feeds on its own voluntary muscles. The dissolution of these muscles, and leakage of their contents into the bloodstream, sends the body into rhabdomyolysis, which can cause renal failure and is damaging to the heart and kidneys.
Chet began exhibiting the symptoms of VLCAD as a teenager. One minute he was an active varsity tennis player, the next he was struggling to get through a full day of school. For years, doctors lacked answers to his condition. A group of physicians at Oregon Health & Science University (OHSU) eventually referred Chet to CHOC Children’s Metabolic Lab. CHOC sent him to the Hoag Palliative Care Clinic. “I was barely getting through my day,” Chet admits.
At Hoag, he was astounded by the care he received. “When they asked me how I was doing, it wasn’t perfunctory. They expected an answer, and they were listening. Not only were they listening but they were ready to help—a life preserver tossed when expectations of help had long since disappeared.” According to Chet, the real magic of his experience with the Hoag Palliative Care team was learning how to manage the impact of a chronic condition, not solve it. Chet’s resiliency and determination to grow impressed the palliative care team.
Mona says, “Chet is curious, funny, present and aware of others around him. He is willing to take on any challenge. He came to us with an open mind and an open heart. He was ready to be helped, which made working with him so easy and rewarding.”
To improve access to palliative care for patients and families throughout Hoag’s community, philanthropic funds allow for the strategic integration of palliative care services into the fabric of patient care at Hoag. Educating the community and raising awareness around compassionate care is key. According to Dr. Nguyen, “It’s through our partnership with visionary donors that we are able to provide a comprehensive team approach to meeting the unique needs of our patients and care for the whole person. It’s a tremendous honor and privilege to offer this level of personalized care at Hoag.”
Chet attests to the damage that labels like chronic, incurable and progressive wreak on your sense of self and your relationships. “Where do patients go when they have exhausted the list of specialists and doctors shrug their shoulders at the notion of additional resources? If they are very fortunate, Hoag’s Palliative Care Program. I am grateful beyond words for their dedication and passion.” With the help he’s received at Hoag, Chet can finally wake up every day with a sense of peace, knowing he is equipped to take care of himself and focus on living his best life.