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 11^th 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.

She walks nicely: Staph infection and payment for hospital errors

Virginia Harvey, age 47, broke two bones in her left ankle while stepping off a curb in Boston in 1996. She required two operations at Brigham and Women's Hospital. After the second surgery, her ankle became infected, in the hospital, she believes.

The staphylococcus infection ate away parts of her ankle and crept up her shin, requiring 26 additional surgeries, 15 of them at the Brigham. Eventually she switched to Beth Israel Deaconess Medical Center in Boston, where surgeons amputated her leg below the knee. The infection has caused other problems, for which she now takes medication.

Virginia testified last week on a bill now being considered by the Massachusetts Legislature (H.2226/S.1277), the Healthcare Transparency bill. She walks nicely, and you wouldn't guess that she wears a prosthetic leg and foot. That belies the suffering she has experienced over the years. In addition to her suffering are the bills: she has paid $18,000 so far out of her own pocket for the prostheses – which she will need to replace as she ages.

Insurance covered most of the cost of her care; the Brigham has not waived any of her bills. Insurers, of course, set their premiums so as to cover their payouts, so all Massachusetts residents are paying for the Brigham’s errors.

The vice president for clinical affairs for the Brigham's parent organization, Partners HealthCare, said he and his colleagues are now developing a policy on when to waive charges. Until then, he added, Partners' executives make decisions on a case-by-case basis.

Nationally, Medicare has recently formed a policy aimed at preventing hospitals from receiving payment for their errors, beginning in October 2008.

Advice to victims of medical error: Ask your state legislators if you can testify on bills to reduce medical errors. Tell your story there, and here.

Read about another patient's experience with a leg staph infection, or read more from Liz Kowalczyk's article in today's Boston Globe.