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.

I see seven!: Use of social media by seniors with multiple chronic conditions

A story from Debbie Scammon, PhD:

We are trying to reach our most fragile patients, the ones with multiple chronic conditions, who have extra needs for supportive care. I led a focus group a couple of weeks ago with ten patients, all over 60, all with at least one chronic condition. We thought people like that might be especially hard to reach with a patient portal. But every one of them HAD been on our portal, which we've had only since the Fall 2010. Nearly all of them had been looking up their test results there, after an appointment, to check the posted test results, because, they even said, they wanted to put them on Facebook! Why? I think so they could show off to their friends, even small successes, like: "I got my blood pressure under control!" or "I walked an extra mile," or "I lost five pounds!" They'd look forward to getting congratulated by their peers, getting accolades; they want that pat on the back. It might be more meaningful to them when it comes from someone who understands the situation they're in, even more than from a doctor.

Later on in that same focus group, one patient who'd been a patient advocate in a community organization raised the possibility that patients with similar conditions could start a peer support group. It was notable to me that they weren't dependent on healthcare providers for that; they wanted to be there to support each other. The information shared was that vital to them. For example, one member of the focus group had said, "I wish my care team didn't ask me what meds I was on every visit." Another member of the group responded, "That's because you only see one doctor; I see seven!" So the light bulb came on for the one who was objecting to the medication reconciliation; she said, "Now I get it!" They're able to explain to each other in understandable terms why things are happening with their conditions and their care. That's really powerful. That's the whole basis of social networking.

There's a great positive opportunity for using social media, especially electronic media, more generally to engage patients and facilitate their communication with each other.

Debbie Scammon's advice to seniors with several chronic conditions: Learn to take advantage of the "power of many" available from your peers both on- and off-line.

Thanks to Debbie for our interview in June 2011. See the executive summary of one of her recent articles.

She has found such a source of strength: Empathy for SMA type-1 sufferers

Q. My cousin and I are in our late 20s and quite close. This past year, her newborn son was diagnosed with a condition called SMA type-1. It is a form of muscular dystrophy and is terminal. Babies born this way are missing a gene needed to build and maintain muscle. There is no cure, and babies rarely survive their first year.

I am in awe of my cousin's strength. She has developed a large network of friends on the Internet, who all have, or have lost, a child to this illness. Every time we talk on the phone or see each other, she updates me on all the babies who have passed away since the last time we spoke. Talking about these things helps her cope and prepares her for what is coming.

My problem is that I'm empathetic by nature and am becoming increasingly overwhelmed hearing about all these babies passing away. How do I curb what I am feeling so that I can keep listening for as long as she needs me? Signed, Overwhelmed

A: She doesn't need to talk with you about these deaths because she has this large support network. I would tell her it's become too much for you to hear of all this loss, and that you are grateful she has her support group, all of whom are experiencing the same thing. You are not really part of their "club" and must ask to be left out of the loop of updates. That said, tell her you will do anything you can for her, and you love her as always. You might add that it's wonderful she's found such a source of strength in fellow sufferers.

Read another story about empathy for a medical condition. Thanks to columnist Margo for the source story in today's Boston Globe.

I have a friend who understands: Friendship among cancer survivors

Cori Liptak's story [excerpted from this article on Cori Liptak’s work]:

Survivorship and treatment completion pose their own challenges. Brain tumor survivors struggle with multiple medical, cognitive, and physical challenges. These impact school, work and friendships; many struggle socially. To help meet some of these challenges, I've started a program called STEPS (Success Through Education, Psychosocial Support and Socialization) that holds a dinner once a month for brain tumor survivors and their caregivers. Patients know that they're going to see people who are like them and understand what they're going through, which is what has made people come every month. As part of the program, we took a group of brain tumor survivors to Project Adventure, where they worked as a team to overcome challenging tasks like climbing a tree and walking across a wire. One girl who is legally blind wanted to try the task, and the group worked together to help her get up the ladder and to the tree. They did this solely with communication and absolute trust, and it was successful because they all really care for each other. These are people who have established friendships outside of Dana-Farber. Once you've seen a patient connect with another patient and be able to say, "I have a friend who understands," the power of that type of success goes beyond anything I can really describe.

Advice: Find friends who have survived the same crises you did.

Thanks to Cori Liptak, PhD, for the source article in the Fall/Winter 2008 issue of Paths of Progress, a Dana-Farber newsletter, edited by Dawn Stapleton.

It’s almost unfair to my loved ones: A brain tumor support group

Jeffrey Schanz of Washington, DC is an 11-year survivor of a glioblastoma. After treatment, he was able to return to his high-pressure job with the U.S. Department of Justice as director of the Office of Policy and Planning within the Audit Division. He recently accepted a new job as inspector general of the Legal Services Corporation, which provides legal assistance to low-income people.

Jeffrey, age 56, runs a support group at the George Washington Cancer Institute in Washington, DC. Support group members share nutrition and exercise tips, information about alternative therapies, and humor.

Attending a support group helps him deal with the ups and downs of his recovery. Though his thinking is about the same as it was before the brain tumor, “not every day is a good day….There have been cases where I’ve had to be more deductive to figure out what was going on instead of just snapping my fingers and going, ‘Oh, yeah, I understand that...' In the brain-tumor world we call it a ‘new normal’ because you’re never going to be the same person," he says.

He understands the need for camaraderie. “It’s almost unfair to my loved ones,” he says, “but I’m more comfortable with brain-tumor survivors because we all know what we’ve gone through. It’s still hard to articulate how hard you have to fight.”

Advice to people with a brain tumor: Find a support group to participate in.

Read another brain tumor story.

Thanks to Stephanie Cajigal for the source story in the September/October issue of Neurology Now.

The furthest you could be from courageous: Attitudes toward one's own cancer

Although public figures like Teddy Kennedy promote enduring impressions of the stalwart, pumped-up spirit, Dr. Joseph Finns says patients themselves often describe a more nuanced, evolving journey.

When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, "Everything went dark, went blank," he recalled. "I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, 'How long do I have to live?'"

Faced with potentially harrowing repercussions from a biopsy, Robert, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. "I never felt brave or courageous," he said. "I don't know what that means. I was scared. I was the furthest you could be from courageous."

That was 15 years ago. Now 61, he paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. "Some people in my group don't want to hear the upbeat scenario," he said. "The way they're coping is completely the opposite because they feel they may not make it."

Dr. Finns' advice to patients: There's no scripted way to handle this. Write your own script based on your own narrative.

Read a story about Teddy Kennedy’s brain cancer.

Thanks to Jan Hoffman for her source article in the June 1 issue of the NY Times.

We did this to change thousands: A breast cancer survivor

During her treatment for breast cancer, Kim Carlos, 36, ate lunch once a week at the Nordstrom department store in Kansas City, Missouri, with three other young women with breast cancer. They wrote a book based on their discussions, "Nordie's at Noon," and published it themselves. Their grass-roots marketing was so successful that Da Capo Press bought the book and is redistributing it.

Kim's work brought her so many requests for speaking and advocacy work that she decided to leave her position at a law firm in Kansas City to dedicate herself to motivational speaking and issues-oriented public relations.

"We didn’t go through this to change one life, we did this to change thousands," she said.

Advice: Share your survival stories, your pain and your joy, with your support group of friends, like Kim.

Read another breast cancer survivor story, or read the source article by Marci Alboher in the Oct. 25 issue of the New York Times.

I owe my life: Recovery from alcohol use

Heather's story

I have been documenting my life lately but not here. I miss it. I owe my LIFE! to 43things.com. The support I have gained here has been incomparable to anything in my history. It put me in the place I needed to be. I need to revisit more often to give support to all the others in the early stages of getting where I’m at now. Thank you 43things.com. I am no longer an alcoholic, I have lost more than 40 pounds, I have learned to set goals and follow them through! I am LIVING and all I needed the whole time was a little support. Thanks to ‘make new friends’ I have my own support network these days and HONESTLY I couldn’t have pulled myself out of the darkness I was in if not for help.

xoxo,
Heather Rae Hatton

Advice to those struggling against dependence: Find a welcoming support group.

Read another of our drug dependence stories, or read Heather’s source blog post.