A distressed mom’s story:
Our son was born with a serious congenital heart defect but is healthy and living a productive life, thanks to two open-heart surgeries, one at age six and the second at age 42. He suffered a heart attack at age 20 and a stroke at age 30, both requiring hospitalization, tests, and medication, but has recovered.
Currently, he is a successful free-lance videographer in Massachusetts, working for a number of production companies, but has no organization through which he can buy medical insurance. The MA Affordable Care Act made possible for him to purchase medical insurance as an individual with a pre-existing condition. This insurance covered his second surgery which gave him a new lease on life. His insurance cost before the Affordable Care Act in Massachusetts was well over $1,000 a month, after RomneyCare fell to $800 a month and after ObamaCare fell to $700 a month – still a significant expense. But it has been a huge relief to know that the insurance is there in the event of another medical emergency. The Affordable Care Act works!
Repealing the parts of ObamaCare that cover costs of this program will totally destroy it, leaving people like my son at the mercy of greedy insurance companies. His insurance costs are certainly going to go higher than $1,000 per month as soon as the Affordable Care Act is repealed by the Republicans.
What will replace ObamaCare for the 20,000,000 who, like my son, are trying to survive?
Are the Republicans so power hungry that they cannot see what they are doing?
The storyteller is a member of the Greater Boston Interfaith Organization, a group of the congregations of 42 churches, synagogues and mosques. GBIO was a leader in the coalition that brought universal health insurance to Massachusetts, as the model for ObamaCare.
Read about the effects of universal health insurance in Massachusetts.
Have a Story to Tell? Had a medical error?
Frustrated with a health problem?
Tuesday, February 7, 2017
A distressed mom’s story:
Saturday, February 4, 2017
Guadalupe Mota told his story at a meeting of nearly 900 members of 32 of the churches, mosques, and synagogues in the Greater Boston Interfaith Organization on Feb. 2.
I am here because the Affordable Care Act (ACA) saved my life. I was born and raised in Zacatecas, Mexico. When I was learning to walk as a child, like many kids, I would fall and bump my head. But in my case, when that happened, I’d start to bleed uncontrollably. My parents took me to the doctor, and I was diagnosed hemophilia. Hemophilia is a hereditary disorder that prevents a person’s blood from clotting. That means both internal and external bleeding can easily become life threatening.
At age 13, I had a severe internal bleeding that put me in the hospital. The doctors could not control the bleeding because the medicines they needed had run out. Mexico’s healthcare system was, and still is, too poor and broken to afford the medicines patients like me needed. During that stay in the hospital, I bled so severely that I clinically died twice. Miraculously, I was brought back to life. It is a miracle I am alive today. In many countries like Mexico, hemophiliacs die in their childhood or teenage years because there is no medicine available.
My parents decided they couldn’t allow this to happen again. Holding dual citizenship in the United States, they decided to move our family to California. They left behind their jobs, our home, and many of our family so I could have access to the medicines I needed. Once in the United States, I received insurance through the state, then through MIT, when I came here for college. After that, I was covered by my employers. As a working adult, my pre-existing condition prevented me from getting coverage for myself.
Fast forward to January of 2016. I graduated from business school without a job--and without insurance. I once again felt the desperation I had in Mexico. If this had been 2008, my pre-existing condition would have made it impossible to buy insurance. By this time, though, the ACA was in place. It allowed me to purchase insurance through the Connector at a reasonable price. For the months it took me to find a job, it was my safety net.
That safety net saved my life. Two months after graduating, I again ended up in a Boston hospital with internal bleeding. The medicine provided by the hospital stopped my bleeding. But without my insurance, there’s no way I could have afforded those medicines. My condition could have killed me, just as it almost did in Mexico. But it didn’t, because of the Affordable Care Act. I am here because the Affordable Care Act saved my life.
Share this, and your own story, with your U.S. Senators in Alaska, Arizona, Iowa, Maine, Nevada, Ohio, Pennsylvania, Tennessee, West Virginia and elsewhere. Get their name and phone number here. Read another ACA story.
Monday, January 16, 2017
Tuesday, December 27, 2016
I’ve donated blood 90 times over the years to the American Red Cross, most recently as a platelet donor. For that, they put you in a comfortable recliner, and you lie still for two hours with needles in both arms, asking a nurse whenever you need them to scratch your nose. This felt like doing something that was good every three months, but it was abstract. It hit home when one of my oldest and closest friends was diagnosed recently with leukemia. So I’ve decided to donate more often in Rick’s behalf, and I’m collecting money for the American Red Cross, as I’ll be on their team for the April 2017 Boston Marathon, around my 60th birthday.
This will be my third marathon, after running in 1997 to prove 40 wasn’t fatal, and in 2014 to reclaim the Boston Marathon as ours from those who’d have us live in fear after the bombing in 2013. So now I’m doubling down on my commitment to the Red Cross, with a goal of $10,000. Can you help me along the way now? Please click Donate at my marathon page. I like to walk the talk; you can help me run the talk.
Money back guarantee: If I don’t finish, I’ll pay you back. -Ken Farbstein
Friday, December 2, 2016
Angela A’s story:
In the last 3 – 4 years, I had some issues about walking without difficulty, and some acceptance issues with my health, and the decline in my health. I went into the doctor’s office to get a checkup, and ended up in the hospital for three weeks. It was kind of scary! Every time, they found something else! I didn’t realize how despondent and depressed I was becoming. I work full-time at home, though I hadn’t wanted to do that initially. I’m pretty sedentary, so going to work was the social thing I did that gave me a sense of camaraderie.
It felt like things weren’t worth it. I was having issues with depression and my newest diagnosis, diabetes. And I had other things going on with my hospitalization, bing, bing, bing, boom! There were too many other very emotional things going on then.
I’m a nurse, so I know you can help others. I do that all day long in their journey to get healthy again. I know all about diabetes, but when it happens to yourself! You can’t help yourself—I found that out.
My health issues triggered a call from AbleTo. A nurse would call me every three months, so I got to talking with them. We could do it over the phone, which was very convenient. They connected me with a social worker, JoAnna, and a nurse, Marta. They do an assessment the first time, and the two of them collaborate.
They had an eight-week course so we could dig in, and teach mindfulness and other strategies to get myself in a better place. Now I talk to each of them once a week: the social worker on Monday, and the nurse on Wednesday. The social worker looks at the social aspects. The nurse is a teacher. She was fundamental in giving me online places to read about the mindfulness technique, relaxation, and learning to eat in a different way, with the diabetes.
I can’t do all the things I used to be able to do, but I can look forward to things I can do. I lost quite a bit of weight. I had lost some, but then I lost 46 pounds, which was easier with help on the phone. They motivated me. I didn’t realize how badly I had not taken care of myself emotionally. I’d been avoiding getting out and seeing my friends and family outside the house, having them come to mine. Marta and JoAnna encouraged me to schedule times and to set goals like to at least go out once a month, like attending a function with friends a couple of times a year to meet up with old nurses I used to work with, which I do now.
I got tons of grandchildren. I’m on oxygen, with a walker. I’m not vain, I’m just not used to people seeing me outside the home. My son and daughter-in-law moved in with me, and assist me with a lot of things. There gets to be conflict with that, with communication, for example, so I’m setting goals with that too. Now I’m able to communicate better with my son.
Life is better now. I’m more active. I go out to birthday parties. The last one was for three of my grandchildren, ages 4, 7 and 17. The best thing was the fact that I went and enjoyed myself. I had so much fun! I went by myself for the first time. That was kind of daunting because I have oxygen and a walker, and it was 25-30 miles away at my oldest son’s house. The biggest problem for me was in asking for help, for me to realize, Hey, if you can’t assist me, I’ll do it myself. I did! I’m taking back my life a little bit, at a level that I can. I’m meeting up with friends, and I have a better social life.
Dr. Reena Pande’s comments:
I’m the Chief Medical Officer at AbleTo. As a cardiologist, I spent a lot of time with my patients focused on lifestyle and behavior change. But I also quickly recognized that as physicians we are really quite good at telling people what to do, but not as good at helping them figure out how to do it, or at helping them identify and overcome the barriers that are standing in their way! And for so many people, it became clear that that barrier was in fact a real mental health challenge like depression or anxiety.
So at AbleTo, a national behavioral health provider, we do just that. We pair each patient with a therapist and a coach who they meet with weekly by phone or video. The treatment program uses protocols and is tailored around a specific clinical condition and uses Cognitive Behavioral Therapy (CBT) at its core. The coach really helps the patient translate what they’ve learned in the therapy sessions into something actionable.
A lot of my work is focused on measuring outcomes and proving the benefits of our treatment for patients and our partners. For example, we’ve found a consistent decrease in depression in the range of 50 – 65%, fewer admissions to the hospital and better diabetes management as shown in our articles in AJMC and Telemedicine and e-Health.
I sometimes joke that the care isn’t rocket science; what's rocket science is finding the right people at the right time, keeping them engaged, and ensuring the treatment is easy to access and very high quality. For example, we have a proactive outbound screening program, since so many people aren’t identified otherwise. We use our clinical algorithms based on claims data, pharmacy data, and other health-related information to identify who’s at risk. Our engagement specialists are trained to reach out to people in a very empathic and destigmatized way. We make it ok to accept the help they might need. It's very satisfying to know we are making a difference.
Ken’s note: The journal article describes a study that looked back at 466 people with diabetes who had gone through the AbleTo program. Among people who had had highly severe depression, anxiety, and stress beforehand, they had major reductions in depression (67%), anxiety (59%),and stress (70%). More of them started measuring their morning glucose levels. The people who had had the highest morning blood sugar levels had the greatest reductions in them.
Read a story of another innovative approach for a person with diabetes. Thanks to John Pelle of AbleTo for connecting us.
Monday, October 24, 2016
Monday, September 26, 2016
Wednesday, August 31, 2016
Wednesday, August 17, 2016
Monday, August 1, 2016
Friday, July 22, 2016
A Patient Family Advisory Council’s reduction of waiting room anxiety: I think about who’s coming after me
Wednesday, July 20, 2016
Tuesday, July 5, 2016
Friday, July 1, 2016
Another story from Dr. Maren Batalden:
A few months ago, I treated an elderly gentleman with cancer who was getting chemo, so his immune system was compromised. He got a urinary infection and ended up in the ICU [intensive care unit] with sepsis, needing specialized attention to support a very low blood pressure. He got better surprisingly quickly with antibiotics and fluids. He came to the regular medical unit late the following afternoon where I became the doctor in charge of his care. I met him the next morning and he told me he felt fine and was ready to go home. He’d been quite sick, so I wanted to watch him another day, especially because we didn’t yet have the culture results from the bacteria which caused his infection and we didn’t know which antibiotic would be safe for discharge.
I explained my concerns to him. “When will you have the culture results that describe my bacteria?” he asked. I said tomorrow. So he asked, “How about if you give me a dose in the hospital of an IV antibiotic that works for 24 hours, give me a prescription that is your best guess about an antibiotic pill that you THINK will treat my infection, let me go home, and call me tomorrow if we need to change the antibiotics. If we need to change it, we’ll change it then.” I thought it was a great idea! He said, “Why should I sit in the hospital waiting for lab results?! If I feel terrible, I’ll come back.” He did great! I called him the next morning; the culture results confirmed that his bacteria was sensitive to the antibiotics I had prescribed. He felt well and continued his recovery without complication at home.
It used to be that when it was time to discharge someone, I figured it was largely my decision to make. Many patients assume the same. “You’re the expert, doc. You tell me.” But I have come to realize that it’s NOT my decision; it’s a shared decision. I understand what the labs and the physical exam are telling me. But I don’t know really know how the patient feels compared to his or her usual state; I don’t really know what kinds of supports they have or don’t have at home. Decisions about whether and when to admit a patient to the hospital and whether or when to discharge have to made together. To my surprise this framework has pretty significantly changed my practice. I find myself keeping people in the hospital for another day or two, when left to my own devices, I might have discharged them earlier, or vice versa. The best care, I have come to believe, is always “co-produced.”
Thanks to Dr. Maren Batalden for her story. Read her article in the British Medical Journal on co-production of medical care.
Monday, June 27, 2016
Thursday, June 16, 2016
Friday, June 3, 2016
This is Part 2 of Debi Janway’s story about her mother’s care at Planetree. You can read Part 1 here.
It was a home-like feeling. I was here late in the evening, and my family would come. The waiting room in MedSurg is home-like, with round tables to eat at and relax with nice chairs, on the same floor as my Mom. So you know if the doctor or nurse wants to see you, you’re right there. You can heat up your own food in the kitchen that’s right there. If your family member is allowed to eat the same food while she’s in the hospital that she eats at home, you can cook that food for them.
They did aromatherapy. Mom absolutely loved the lavender they’d put in her room, it was so soothing. It was very quiet. You could hear a pin drop. No one just entered the room; they always knocked first, and asked, Would it be all right to come in? The lab techs would ask, Is this a good time to come in? It wasn’t intrusive. They’d ask, Is there anything else I can do for you? My Mom might say, Yeah, I’d like some more ice water. The lab tech or whoever would get her what she needed. As a Care Partner, we could do that too.
Hospital CEO Susan Stone adds:
We have a program, Lights Out Lavender. We’ll do a back massage for the patient, and ask if they’re ready for bed. Our staff round every hour.
We worked hard to make it quiet at night. For example, we have reminders to make sure the environment is quiet. We did an assessment and realized that the Housekeeping carts were too squeaky. The doors for the patient laundry used to click shut really loudly, so we’ve changed those. Also, we use soothing sound machines if patients like them, to create white noise, which can sound like rain, or the ocean.
Ken’s comment: The healing environment creates tangible results. Patients have high satisfaction, as do physicians and other staff. The environment seems to quicken healing, as patients’ length of stay is significantly shorter than in a comparison unit, according to “A Retrospective Evaluation of the Impact of the Planetree Patient-Centered Model of Care on Inpatient Quality Outcomes," abstracted here. Even so, the hospital has been profitable since 2010, perhaps because so many have heard about the spa-like hospital.
Thanks to Dr. Susan Stone and Debi Janway for sharing their story.