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Wednesday, May 23, 2012

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.

1 comment:

Unknown said...

The role of a patient advocate has become a critical one in modern day. I have now had the privilege of speaking with a number of folks that were thrust into the role without preparation and had to learn on the fly. Given the complexities and challenges of the healthcare system, the legal system, the ethics of different institutions and the personal views of the patient and family, a knowledgable and competent patient advocate can play a priceless role in person's life and their family's lives if they are struggling with a health issue. I am glad to see there are a number of educational institutions that are now bringing to bear programs teaching folks how to become competent patient advocates. I think we will see more of this in the future. I do see a lot of help out there for people looking to find good patient advocates but fewer programs for those looking to learn how to become a patient advocate. For anyone thinking about this noble profession I would suggest checking out a couple of good programs that are now currently available. The first is through Empowered UCLA Extension. You can learn more at:
The second I would recommend checking out is through the University of Toledo. You can learn more at:

I hope this might help anyone thinking about helping folks out who are truly in need of a patient advocate.