A mesothelioma survivor on patient-centered care: For a reason
An interview with Heather von St. James:
Q: How would you define “patient-centered care?”
A. The nurses at Brigham and Women’s Hospital in Boston were really tuned in with my needs. I really wanted orange Jello. I couldn’t eat anything. My nurse called her husband. He went to four grocery stores, found some, and brought it to the hospital. I ate that Jello like it was the best food I ever had!
Q. Is there anything the medical team could do to give you more peace of mind?
A. A cancer diagnosis is just as much about the loved ones, the children, as it is about the patient themselves. A lot of medical places miss that - it almost affects the family more. The cancer patient has it together, but the family is falling apart. Catering to the whole family is better, so the mesothelioma program concentrates on the whole family.
People [with mesothelioma, while at the hospital] are far away from home: one-third are from outside the Northeast. Every Wednesday, in a conference room on the 11th floor, there’s a caregiver and support meeting with two social workers and two clergy, and we talk. The Brigham and Women’s staff fostered our talking to the whole family. That’s through the international mesothelioma program.
When this happens to a woman, suddenly her husband is in a caregiver role. The others in the group were all wives. They took my husband under their wing. That set my mind at ease; I was worried about him, and that eased it. Knowing there are people looking out for your spouse, or daughter, etc., is great, so you can concentrate on getting better.
I was in Boston recently, for a checkup (cancer-free! Yay!). I always speak at new patient orientations. It’s a terrifying disease, because people are told, “You have six months to live, so get your affairs in order.” But they see me and say, There’s hope.
God put me on earth for a reason – for that hope.
Read the first part of Heather von St. James’ mesothelioma story, and see Heather's blog. Thanks to Heather for the interview.
