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Wednesday, November 19, 2014

A young AIDS patient: What love is

Dr. Betsy MacGregor’s story:

     We admitted a great number of children who were sick with AIDS to my hospital back in those days, and sadly we lost many of them.  I remember one two-year-old boy in particular.  He touched me deeply.  As was typical, he had acquired the virus from his infected mother when he was born, and despite our best efforts to help him, he was slowly slipping away from us.  He lay quietly in his crib, hollow-eyed and emaciated, never smiling or even crying.  He simply did not have the energy.

     The little boy’s mother had brought him to our emergency room one night, burning up with fever.  The chest x-ray we took showed he had pneumonia, and so we promptly admitted him to the pediatric ward.  His mother lingered at his side for a time, but then departed and never returned.  Eventually we learned she had been admitted to another hospital shortly after leaving ours and had died there from complications of her own AIDS.  The one thing she had left her son was his name. She had called him Angel.

     Angel had been on our pediatric ward for three months.  There was no other place that wanted him, and frankly we were happy to keep him with us.  At least we knew he would be fed and kept clean and sheltered and would occasionally be held in another human being’s arms when one of the staff was able to spare a moment or two.  We knew he had little time left.

     One night, when I was on call and kept busy on the ward into the wee hours of the night, I glimpsed a side of Angel’s story I had not been aware of before.  The lights had all been turned down and most of the children put to sleep in their beds, and I was going about my intern’s work – reviewing orders, checking on patients’ vital signs, and peeking in on the sickest ones – when something caught my ear.  A faint lyrical sound was whispering down one of the dimly lit hallways.  Listening closely I detected the thin notes of a melody carried by a human voice. 

     I was tired and still had chores to do, but the wistful sound called to me, and so I followed it, curious to learn what its source was.  It led me to Angel’s room.  Yet what I saw through the doorway as I approached made me pause and remain in the quiet shadows of the hallway rather than enter.  For it was clear that more was taking place in Angel’s room than the sad wasting of an unfulfilled life.  Something more intimate was happening, something that needed not to be disturbed.

     With Angel was his father.  I had never seen the man before, but during discussions on our daily morning rounds, I had heard that he often came in the wee hours of the night to visit his son.  He was a tough-looking person, unshaven and stamped with the harsh signs of inner city life and his own battle with the AIDS he had acquired during years of drug addiction.  I wondered what factors in his life prevented him from visiting in the light of day as other parents did.  Perhaps he was fully occupied with trying to survive, I thought, or maybe he just preferred the lonely hours of the night, when he was less likely to encounter the accusing stares of strangers’ eyes.

     The man was sitting in a chair, holding Angel on his lap and feeding him infant formula with a dropper.  As I watched, he waited carefully for his son’s lips to accept each drop before offering him another, all the while gazing into his child’s eyes and softly crooning a melody – a hauntingly soothing sound, the notes filled with reassurance and encouragement.  Angel’s eyes remained fastened in turn on his father’s face, as if he were drinking in life-giving nourishment from the look that he saw there.

     The two of them were in such a rapt communion that I remained bound in unmoving silence outside their door.  It seemed that I had been summoned not to enter, but to stand as an observer of this exquisite scene, witness to an act of meaning that lay beyond my mind’s measuring.

     What I had been called to witness, my heart said, was the love that was shining brightly in that little room.  Nothing more than that, and nothing less.  In the light of that love, the tragedy of Angel’s pitiful life – of both their lives – was being lifted up and set aside.  I could feel the truth of that as surely as anything my medical books had ever taught me. 

     The shadows in the hallway seemed to whisper, Do you see?  This is what love is.  It is a force more powerful than even life-destroying disease.  It can tenderly embrace whatever the world has abandoned as hopeless and transform it into something to be cherished.

Read a story about the power of love from a group.  Thanks to Dr. Betsy MacGregor for permission to reprint this excerpt from her book, In Awe of Being Human: A doctor’s stories from the edge of life and death

Tuesday, November 4, 2014

Weight Loss in a Group: The team was my family

Stacie’s story:
Two years ago I decided I was tired of how much I weighed and how I felt.  I’m a former athlete, so I’ve worked with coaches and trainers, but I was missing something.

In an Internet search, I found seven nutritionists in my area, and I settled on Kerri Hawkins because of this wellness group.  It was spring, and the group started in the fall, not summer, because people would miss a lot then, and you have to be committed to it.  I started meeting with Kerri individually.  And then I began with the Wellness Group in September 2013.

There’s one caution about the Wellness Group:  you have to be comfortable talking in a group.  Group settings have always been very positive for me.  My team was my family in high school and college.  Having that support around you when you have setbacks, that’s what I got when I came here. 

They set up an e-list for us.  We met 15 times over 20 weeks, once a week for ten weeks, then every other week.  At each meeting we received a new challenge.  Keri and Dr. Altman encouraged us to talk via email about the challenges.  For example, one challenge was, “No added sugar or artificial sweeteners.”  You’re suddenly looking at all the ingredients.  I had to give up diet soda, which, it turns out, is worse for you than sugar.  For women especially, artificial sweeteners are linked to the risk of stroke, and it triggers cravings in the brain for more sweets later.  I still have popcorn with butter and soda with my husband whenever we go to the movies.  We now share a regular soda. 

The “no added sugar” challenge was really hard for everyone in my group.  We received emails that informed us about people’s success.  These really kept me going; otherwise, it would’ve been easy to get lost in thinking, “I wish I had ___,” etc.

The e-list also let me do one of the things I like most:  to cheer for people.  I made a point to respond to every email that came through, which was helpful for me.  I loved celebrating my group’s successes.

And that’s where the team component comes in.  One woman in the group realized it wasn’t the right setting for her, since she did not feel comfortable sharing like the rest of us.  You have to talk about things that are hard, e.g., being a national level swimmer, with a controlled diet.  When I was no longer a competitive swimmer, my unhealthy relationship with food came out and I put on weight in my 20s and 30s.  I had the support of my group, their encouragement and sometimes a hug (when needed).

This program helped me to develop a healthier relationship to food.  It’s not like a 12-step program with alcohol.  You have to have food every day, so I had to establish a healthy relationship with my food.  I’ve even shared this healthy relationship with my dog Jordy.  He loves sharing a bowl of raspberries or splitting a banana.  I lost 48 pounds in 20 weeks.  I made enduring friends and have the lasting support of a team.

Thanks to Stacie for sharing her story, and Kerri Hawkins and Dr. Wayne Altman for connecting us.

Tuesday, October 28, 2014

Weight Loss Groups: Those who post lose the most!

Howard’s story:
     I retired in 2010 at age 69.  Wayne [Altman, MD, my PCP] said, Howard, you should join these groups that Kerri and I have been running.  I was pre-diabetic, on the threshold of being obese.  I had issues with my blood pressure, glycemic index, cholesterol, and all that stuff.  I was skeptical but I was willing to give it a try, because I’ve dealt with weight issues for all my life, and nothing I’d tried before ever worked (or worked for very long). 

     The secret sauce?  You’re in a group, where we all come from different facets of life.  The thing we have in common is the need to deal with health and fitness.  It doesn’t make a difference if you’re a high-powered executive, or retired, or you work like Stacie.  Over 20 weeks, you bond, and you develop a community, and affection.  These e-lists are set up for each group, and remain even after the group is over.

     I was in Group 4, which began in September 2010.  We had buddies; Gerri was mine.  I was sending emails.  But then I thought: Does she really want to hear this?!  She’s much younger.  I’ll send her an email, and I’ll ask her, Is it too much? I won’t be offended.  Her answer was, Oh, absolutely not!  I love it.  It’s a reminder for her of what SHE had made as a commitment to do in her own life.  It’s support and accountability at the same time. The next week, she shared this, and she suggested Wayne should appoint a nudge to remind the group to do emails.  So I did, sharing a daily email about me and responding to others.  The traffic on the e-list just took off!

     So now we say, Those who post lose the most!  You have to be willing to share your difficulties as well as the successes.  This is for life.  Doing it alone wouldn’t work. 

     I found I was having success.  I decided four months wasn’t enough of a baseline.  So I re-upped with another group.  By June 2011 I lost 30 pounds and eight inches in my waist, and even better, I managed to keep it off.  I sleep like a babe!  I’ve become active – I Nordic walk, power walking with poles, and I go to the gym.

     I’ve been in a regular group or an advanced group since I’ve started.  Although I’ve mastered the exercise and the food piece, my sense is I will always want the connection, the group.  The advanced group meets once a month over ten months.  Also, occasionally we can get together between the monthly meetings. 

     So now I’m giving back, paying it forward.  I serve as a resource for the wellness group program and I’m a regular “guest speaker” at one of the initial weekly sessions of each new 4-month program to share my experience and offer support.  I thank Wayne and Kerri [Hawkins, nutritionist] for saving my life.  All my tests are normal or optimal.  I’m off statins and blood pressure meds, and I just take Vitamin B-12.

     I’m still in contact with my group from 2010, since you develop friendships.  I still post to all the groups I’ve been in, and some people respond, even now.  

Read another story about weight loss.  Thanks to Howard Cloth for sharing his story.

Tuesday, October 14, 2014

Pharmacist-led diabetes disease management: We get to cruise control

This is Part 2 of the story of Sandra Leal, PharmD. Part 1 described her care for an older woman, Maria, at the El Rio Community Health Center, a Federally Qualified Health Center.  Sandra’s program received the Pinnacle Award in September 2014 from the American Pharmacists Association.

     We’re in medical suites, like the other medical providers.  We have appointments for patients who are referred to us for trouble with the control of their diabetes, or who’re struggling to get control, or starting insulin, and have issues with that, e.g., insulin resistance, being afraid of that, etc., so we try to spend a lot of time on the best medication regimen.  With Maria, I spent about 25 minutes yesterday to do an a1C, review her immunizations, and have her vital signs done by a Medical Assistant.  We’re a Diabetes Self-Management Training Site, and a Federally Qualified Health Center, so we have double accreditation, and get paid by Medicare for people like Maria, though here in Arizona, not by Medicaid.

     We’ll handle issues like affordability, complexity of the regimen, and how to fit it into their life.  That’s a big challenge when they’re taking multiple medications for diabetes, usually coupled with cholesterol, nerve pain, depression, etc.  So they take six to twelve medications. That’s a usual amount.  Yesterday 1 had a woman who was taking 18 meds.  Even WITH health insurance, $15 times six to twelve medications is amazingly expensive and unaffordable.  I really try to customize the regimen for their lifestyle.  I really listen to their needs, and work with them. 

     For providers, our automatic trigger is to increase and add another medication.  But it’s better to see why they’re not taking it.  My role as a pharmacist is to focus on that, and really delve into the barriers.  That’s my specialty, which is often overlooked by other medical providers.   Often they’ll send people to the pharmacy just to dispense medication. 

     The most common barriers are not understanding the importance of taking the medication and what it could do for her.  I really spend a lot of time with each medication and what it’d do, connecting it to the lab values.    They might complain about having to go to the bathroom a lot, fatigue, etc.  So I’ll emphasize that they’ll have more energy, and won’t have to get up three times in the night to go to the bathroom.  A lot of times it clicks with people, so they don’t say any longer, I don’t want to take them at all.  We connect the dots for them.  We’ll compromise.  Once we have one success, they come back, asking what else can we do? 

     We have a Collaborative Practice Agreement, so I can initiate insulin, order labs, and generate a referral to other providers.  That makes it more efficient.  We document what we do in the electronic medical record.  We’re med reconciling, adding the mammogram, recoding about the colonoscopy, etc.  That frees up time for the doctor to focus with the patient.  Providers in this model really work well:  it’s more efficient and effective for the patient, because their needs are addressed.

     For a patient like Maria with Type 2 diabetes, her next a1C test is due in three months, so she should come back then.  After that, when we get to “cruise control,” I’ll see her every six months.  When she comes back, we’ll take care of a lot of other issues too, e.g., an eye exam, foot exam, and immunizations.  I’ll make sure we’re doing those on a yearly basis.  We do eye screening here. That used to be a barrier to find transportation, so we worked with a local ophthalmologist to have screening on site. 

     If a patient has another chronic condition, like pain management or depression, we’re basically triaging things for which they should see another provider.  We’d send the patient and we tell the doctor and patient: Focus specifically on depression.  We write it down for the patient:  Your next visit is for depression specifically, because this is impacting your ability to do other things.

Thanks to Sandra Leal, PharmD, MPH, FAPhA, CDE for sharing her story.  Sandra is the Medical Director of Clinical Pharmacists.  Maria is a pseudonym.

Read another story about diabetes care.

Friday, October 10, 2014

Pharmacist-led diabetes disease management: She felt so empowered!

Sandra Leal’s story:
[Sandra and her clinic won the Pinnacle Award last month from the American Pharmacists Association for her clinical pharmacist-led diabetes disease management program.]

My patient Maria is an older woman on Medicare.  I started seeing her in May.  Her a1C [blood sugar level] three months ago was 15.9% – that’s ridiculous!  That’s twice as high as she should be.  She’s not on insulin.  We sat and I talked with her about my concerns, that she was not taking her meds, and didn’t want to take insulin, though that was exactly what she needed.

She was resistant to it, so I wanted her to work on her lifestyle.  She told me a lot about her personal history. She uses a cane since she was injured earlier in life, so it’s hard for her to exercise. 

We compromised, so that she wouldn’t start insulin that day, but the medications she was prescribed, she would take them every day.  We agreed that if her condition improved, she wouldn’t have to consider insulin.  She was medication naïve; she had been prescribed a regimen she wasn’t taking at all.  She had four or five other meds, which she was only taking sporadically, not on a consistent basis.

She felt very empowered after we talked, and did some major life change.  She stopped eating a lot of processed foods, started taking her medications, eating whole foods, and logging her readings.  She said she’d try to go to a dance class.

Yesterday she came back after I’d been calling her for three months.  We did an a1C test here in the clinic, with a point of care test, and her level was down to 7.4, which is amazing!  It improved more than half in that three-month period.  She felt so empowered!  Now our goal is to maintain this level of control. 
Read another story about changing habits related to diabetes.

Thanks to Sandra Leal, PharmD, MPH, FAPhA, CDE of El Rio Community Health Center, a Federally Qualified Health Center in Arizona, for sharing her story.  Sandra is the Medical Director of Clinical Pharmacists.  “Maria” is a pseudonym. 

Monday, October 6, 2014

Needy Meds: Making medicine affordable

Dr. Rich Sagall’s story:
     In the late 1990s, I was still doing Family Medicine and Occupational Medicine.  A medical social worker friend of mine told me about Patient Assistance Programs.  I was in Bangor, Maine and she was in Mississippi.  She had made a small database that she kept on her laptop.  During home visits, she would look up the programs her patients could make use of. 

     I’d taught myself to code HTML.  I thought, this would be a good project to use that, so I started inputting data on patient assistance programs on weekends and after hours.  I put a counter on the website.  I felt guilty about it, because my own visits to the website would inflate the count.  At first, there were maybe 50 visits a day; maybe three of those were mine, so the total really wasn’t so big.  

     Now Needy Meds has grown over the last 17 years.  We have 20 employees, data on 7,000 points of savings (programs, coupons, co-pay cards, camps, etc.), 13,000 free/low cost/sliding scale clinics, and 8,000 to 10,000 visits a day to our website.  We’ve gotten a lot of emails and letters from people about their savings, saying they never knew about patient assistance programs before that.  We make medicine affordable when it’s unaffordable.

     But I can’t tell you about the specific patients we’ve helped.  That’s because of our philosophy:  we want to put the fewest obstacles in the way of people getting the information.  So we don’t have registration, or log-in, or sign-in.  We want access to be anonymous, since some people were concerned about putting their personal information on the Web.  They just type in the drug name, and we give them all the information, including an interactive pdf.

     Now we’re way beyond just medicines; now we have copay cards, coupons, disease-based assistance (programs based on the diagnosis), programs to help people apply for patient assistance programs, including 1,000 state/local government assistance progs, and 3,000 free clinics. 

     We keep all the data current, reviewing every program at least every six months. 

Advice for patient advocates:  Bookmark this site.  There’s no such thing as a free lunch, but sometimes there are free meds.

See a story on the cost of medication, or see Dr. Sagall's blog.

Thanks to Dr. Richard Sagall of NeedyMeds for the interview.

Friday, August 29, 2014

A Don Berwick story: This is the evidence you’ll need

John Sundman and Betty Burton tell about their son:
Jakob was born two years after our daughter.  It was pretty dramatic – the doctors did these tests and looked at the results and then asked Betty and me if we wanted to buy burial insurance!  It was really tacky!

He was a preemie, six weeks early. He was pretty big, at five pounds, seven ounces, so they were wondering whether we had gotten the date of conception wrong.  But his earlobes were translucent, and there were other signs that showed that developmentally he was not too far along. His breasts weren’t formed; he didn’t have nipples. His ears were not all the way formed.

In his first year, he was sickly, and didn’t put on weight.  He didn’t meet any developmental milestones.  We were aware of that because we were not totally inexperienced parents; we’d had another child already.

Even accounting for that, he was just a lump. When I was changing his diapers, I said to Betty:  I don’t think this baby can see.  He was six weeks old at the time.

We went to a pediatric ophthalmologist who diagnosed him with strabismus (lazy eye) and nystagmus and said we should patch one eye.  As an infant, he was sensitive to light, so it was hard to look in there; and the doctor can’t really tell.  He really needed to see Jakob’s eyes under anesthesia, but he was too weak and sickly; so the anesthesia could kill him.  That went on for a long time.

We went through a couple of doctors who were just arrogant.   One said the main problem was a nervous mother.  But Betty had worked on her PhD in molecular genetics at Purdue and used to teach pre-medical students, so she was not intimidated.  She’d say, I graphed his weight; here’s the normal distribution; he’s a standard deviation below; he’s not growing. 

He didn’t show any interest in anything for a year, not in toys, and didn’t reach for anything, he was just kind of there.  Then in a toy store once, he reached for a ball, so I bought that thing so damned fast!  You want it, kid, it’s yours.

We had to take him for medical care from our home in Westborough to Harvard Community Health Plan in Harvard Square in Cambridge.  That’s a long shlep to see the doctor!  Then we moved even farther away to Gardner, 57 miles away from Boston, to a much better house. 

They put Jakob under anesthesia and learned that his retinas were all damaged, with lots of scarring.  They did a blood test that showed toxoplasmosis, a parasitic disease you can get from cats.  That’s why they say to stay away from kitty litter.

The classic hallmark of that is that it almost always attacks the eyes and the optic nerve.  It attacks the central nervous system. It happened when he was a fetus, they said, telling us that the infection is over now, that we should take care of him and he would be fine. 

Betty had a friend who was the head of nursing at UMass Worcester, with access to their medical library.  This was before the Internet, when medical information was hard to access.  It was like the Man from UNCLE. She found a book, Infectious Diseases of the Fetus and Newborn, a 1200 page textbook with a 90 page article on toxoplasmosis.  Betty was reading it to me until 4 a.m. in bed, and said, Oh my God, John!  Two-thirds of infected babies spontaneously abort.  Most of them have mental retardation, and all of them have eye problems.  There’s scarring of the brain, since the organism eats the brain matter.  It can go into the heart and lungs too.  

Forty percent of the world population adults have toxoplasmosis, but if you get it as an adult, your immune system takes care of it.

Betty found an article by Jack Remington of Stanford University Medical School, who said we CAN do something.  We had changed doctors a couple of times, since we were just being jerked around. This was the article that was in the textbook

The doctors did a CT scan and the report said Jakob had hydrocephalus. So we went to a pediatric neurosurgeon, the best in Boston.  He told us, I can’t operate for reasons A, B, C, and D.  He’ll just be a vegetable, so just institutionalize him and have another child. We were outraged! 

We did get a second opinion which said the baby cannot be operated on for hydrocephalus, but it’s not causing any problems right now anyway.

Betty got in touch with Jack Remington; who said, We’ve been treating this in pregnant women and newborns in France, on a drug regimen they’d developed.  Dr. Remington was pushing for wider adoption of it in the U.S., but the FDA has not approved the medicines for this purpose, so we would need a doctor to get a waiver to use that protocol.  Dr. Remington said he would then guide our doctor through the protocol.

Jakob was now 18 months old, and somewhere along the way, we had had it.  We wrote to the head of Harvard Community Health Plan saying, Your obstetrician screwed up by missing the diagnosis even though Betty reported all the signs while she was pregnant. 

All three doctors were condescending; we only liked the ophthalmologist.  But the lawyers said the only one we could sue was him!  He was the only one who had done anything good for Jakob.

To placate us they assigned Don Berwick, because we had good reason to be angry.  He was the eighth pediatrician we’d seen.  He was great.  He listened to the whole history. Betty met with him for an hour and a half; he made sure he had the whole picture.  He didn’t interrupt, or tell us where our thinking was wrong, or that our facts were wrong, like other doctors.  He said, Let me talk to Jack Remington. 

They had Jakob take two powerful neurotoxins - drugs that were good at killing toxoplasmosis.  The first is pyrimethamine; the second is sulfadiazine, to kill the organism; the third part of the cocktail is folinic acid, which mitigates the toxic effects of one of the other drugs.

They got it all worked out.  Don was about to go on vacation out of the country, so he left it with a woman doctor who was the head pediatrician. He was a pretty young doctor at the time in 1983. 

So we start the drug therapy.  We’re about four days into it and suddenly Jakob is shaking on the floor, having a seizure. I call an ambulance.

We found out there were two things going on:  the baby’s weight was said to be pounds instead of kilograms, so they were basically giving our 7 lb baby [???] the dose for a grown woman.  The overdose had caused the seizures.  On top of that, the doctor had prescribed folic acid instead of folinic acid, so there was nothing to counteract the chemo agent. 

After his vacation Don came back and gave Betty the medicine bottles, saying we should hold onto them.  The implication was that if we wanted to sue them, we would have this as evidence.  Betty left with the bottles that showed the errors by the prescribing doctor.

For next six months, we had a doctor we could trust, on the same page with us.  He took charge.  Jakob started to do better. 

He started going to early intervention.  When he got to be college age, he attended classes at Bridgewater State College.  Now, at age 31, he has organized people to help in food distribution.  His vision is poor, but he can read normal-sized print.  He calls it “Facebooking” because he has to hold the book so close to read.  I’d like for that doctor who said he’d be a “vegetable” to see him now!

Betty and I were very happy with Dr. Berwick's medical care of our son and indeed of our family. We do believe that he saved Jakob's life, for if Jakob had not been treated we're sure we would have lost him to the disease. And Don was always kind, thoughtful, humble, hardworking, and clearly motivated by a love of children and of ending or reducing suffering.

Thanks to John and Betty Sundman for sharing Jakob’s story. 

Read another story about Don Berwick.

Thursday, February 28, 2013

How Patient Engagement Improves Outcomes: A Fact Sheet

I recently scanned the literature for the Society for Participative Medicine, finding these key conclusions:

Domain 1:  Patient Experience

Participation by inpatients protects against adverse events, reducing them by half (Weingart et al, 2011).

Multidisciplinary collaborative patient rounds have created a strong trend of overall decreased mortality in New Hampshire's Concord Hospital (Kendall, 2003).

A medical home for children with special health care needs reduced hospitalization by more than 20% (58% vs. 43%), and nearly cut in half the number of parents missing 20 days or more of work (26% vs. 14%) (Davidson et al, 2004).

Patients who participate more actively in physical therapy after hip fracture achieve 25% more of their self-reported pre-fracture function (Talkowski et al, 2009).

Domain 2:  Health Literacy

Interactive computer based support systems have positive effects on knowledge, social support, and clinical outcomes (Coulter and Ellins, 2007).
Enabling patients to see their doctors' progress notes in Open Notes led two-thirds of patients to report they are now more likely to take medications as prescribed (Delbanco et al., 2012).

Domain 3:  Choosing Treatment

Using PatientsLikeMe enables epilepsy patients to have fewer Emergency Room visits (Wicks et al, 2012).

Genetic testing for BRCA1/2 leads women to select risk-reducing surgeries, post-menopausal hormone therapy, and pre-implantation genetic diagnosis (Lorizio et al, 2011).    

Patient participation in medical decisions has been linked to improvements in adherence to treatment plans (Golin et al, 2006).

Shared Decision Making studies show:
Mastectomies were reduced by 74% (Whelan et al, 2004).

Prostatectomies were reduced by 33% (Auvinen et al, 2001).

Cardiac revascularization surgery was reduced by 29%  (Morgan et al, 2000).

Decision aids were associated with 26% fewer hip replacement surgeries, 38% fewer knee replacements and 12-21% lower costs over a six-month period (Arterburn et al, 2012).

Surgery for herniated disks was reduced by 32% (47% vs. 32%), and back pain was significantly lessened (Deyo et al, 2000).

Hysterectomies were reduced by 21%, with cost reduction averaging $1,184 (Kennedy et al, 2002).  

Domain 4:  Self-Management

Patient activation - having the knowledge, skills and confidence to manage one's health - is positively related to 12 patient outcomes, e.g., having an Emergency Department visit, having A1c, HDL, and triglyceride levels in the normal range, etc. (Greene & Hibbard, 2012).

A systematic review article on family-centered care for children with special health needs concluded that most of the 24 studies found at least one association of family-centered care with a positive outcome (Kuhlthau et al, 2011).
Educational and self-help programmes that are actively supported by clinicians improve health outcomes for patients with depression, eating disorders, asthma, diabetes, and hypertension (Coulter and Ellins, 2007).

Domain 5:  Health Promotion

Patient-centered care in outpatient visits (defined by Davis Observation Codes:  patient activation like patient questions, chatting, and health knowledge; counseling, compliance, nutrition, exercise and health promotion) decreased specialty care visits, hospitalizations, and laboratory and diagnostic tests, and reduced total medical charges by about one-third (Bertakis et al, 2011).
Behaviour therapy for patients with advanced lung cancer produced positive effects in physical functioning (Cormer et al, 1996).

Domain 6:  Public Engagement

Online patient communities that have been designed to ascertain clinical outcomes can identify the efficacy, or inefficacy, of certain drugs.  PatientsLikeMe, for example, ascertained that lithium was not effective for its community of patients with ALS (Wicks et al, 2011).


David Arterburn et al, "Introducing Decision Aids at Group Health Was Linked to Sharply Lower Hip and Knee Surgery Rates and Costs," Health Affairs, Oct. 2012.

Auvinen A, Hakama M, Ala-Opas M, Vornanen T, Leppilahti M, Salminen P, et al.A randomized trial of choice of treatment in prostate cancer: the effect of intervention on the treatment chosen. BJU International 2004;93(1):52-6. Auvinen A, Vornanen T, Tammela T L, Ala-Opas M, Leppilahti M, Salminen P, et al.A randomized trial of the choice of treatment in prostate cancer: design and baseline characteristics. BJU International 2001;88(7):708-15.  

Bertakis KD, Azari R., Patient-centered care is associated with decreased health care utilization. J Am Board Fam Med. 2011 May-Jun;24(3):229-39.  See pages 229, 233 & 236.

Corner J. et al.  "Non-pharmacological intervention for breathlessness in lung cancer," Palliat Med 1996;10:199-305.

Angela Coulter and Jo Ellins, Effectiveness of strategies for informing, educating, and involving patients [a systematic review] at BMJ 2007; 335 doi: http://dx.doi.org/10.1136/bmj.39246.581169.80

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Wednesday, November 14, 2012

Smaller and faster patient-centered outcomes research: More than 12 years ago

     I had the pleasure of working with Sue Sheridan at the October PCORI (Patient Centered Outcomes Research Institute) workshop , which brought together 150 members of the public to advise on a new process for funding research into patient-centered outcomes.  Sue was pulled into this work more than 12 years ago by the severe and permanent injury of her son at childbirth.  In hindsight, the reason is clear:  Hospital staff had not performed a simple bilirubin blood test that would have identified the risk he'd develop a rare, devastating condition related to jaundice ["kernicterus"] and cerebral palsy.

Sue and other mothers with similarly heartbreaking stories formed an advocacy organization, Parents of Infants and Children with Kernicterus [PICK].  PICK forcefully and successfully pushed for the American Academy of Pediatrics to issue a new standard of care, requiring all newborns to have an inexpensive blood test that can warn of incipient jaundice.  When hospital doctors and nurses prevent jaundice, which can be done inexpensively by using a special light (phototherapy), they forestall the rare but devastating related complications of kernicterus and cerebral palsy.   

Yet now, more than 12 years later, it's likely that Labor and Delivery doctors and nurses perform this blood test on only a fraction of newborn babies.  Hospital staff adopt best practices like these slowly; we often decry the 17-year gap from the identification of an improvement in medical practice until its widespread use.  And it's hard to believe, but we don't know how many babies go without this inexpensive, life-saving treatment.  

PCORI should immediately fund a study of hospital claims  to ascertain how many newborns lacked this formally approved life-saving inexpensive blood test. 

Even more importantly, this lag between knowledge and practice shows that our process for updating clinical practices is fundamentally broken.  This should have been an easy one:  heart-breaking permanent harm to babies in a relatively small number of treatment sites; inexpensive diagnosis; inexpensive treatment; enraged and organized mothers.

PCORI should fund a small project, for the analysis is very easy.  Indeed, it is particularly important that the study be small, for that will limit the tendency of academic researchers to inflate its scope to consider complexities that attract researchers.  Small is beautiful.  The projects will be finished soon, allowing their more rapid use. Funding small projects will allow innovation in multiple areas, planting many seeds in the knowledge that a fraction will sprout.  It hedges the risk that a few large studies may not yield persuasive and actionable recommendations.  Funding small studies will have political benefits as well, in empowering small organizations of activists that will support PCORI's mission.  

My son was born prematurely, and an alert nurse in the neonatal intensive care unit (NICU) noticed the yellowing jaundice of his skin just as it started.  They put my tiny boy under bright lights, which prevented any build-up of bilirubin, and prevented kernicterus.  There, but for the grace of God, went I.  Our luck held.  I hope PCORI's funding decisions will give outcomes like my son's to many more parents.

Thursday, October 25, 2012

Rocky Marciano and Health Care for All's Consumer Health Quality Council

The boxer Rocky Marciano retired young, at age 32, unbeaten after 49 victories.  So, too, with us:  we disbanded the CHQC this week after a six-year run.  Or maybe we were more like Sylvester Stallone's Rocky:  we got heart, and we always felt like the underdogs, even if, like Rocky, we were oddly fated to have a Hollywood ending.  

Our knockouts:
Successfully advocated for laws regarding: Patient and Family Advisory Councils (PFACs) and Rapid Response Methods (RRMs) in all Massachusetts hospitals, public reporting of infections and serious events, nonpayment for care needed following a serious event, checklists in all Massachusetts hospitals, apology and disclosure following medical errors, shared decision-making, and tracking and reducing harm from CT scans.
Established workgroups to track implementation of PFACs, RRMs, public reporting and nonpayment. Created a PFAC informational web page and a hospital PFAC web page with links to all hospitals' PFAC annual reports. Gathered and analyzed hospitals' PFAC reports and wrote a summary report on their 2011 PFAC reports. Requested information on the use of Rapid Response Methods from all Massachusetts hospitals and created a Rapid Response Methods web page.  Sent written comments to the Department of Public Health following the release of reports on infections and serious events.
Created a website, The Assertive Patient, with resources for consumers who have had difficult healthcare experiences. The site includes a list of all Massachusetts hospitals with information on how to file a complaint or air concerns.
A story bank of written and videotaped healthcare stories from Consumer Council members about difficult healthcare experiences and how those impacted hope to make a difference in improving care.

Bravissimo! from me as former president, to our current and former Dream Team members:

Dalia Al-Othman
Linda Burgess
Celestine Cox
John Evers
Myra Fournier
Ginny Harvey
Barbara Holtz, Vice President
Linda Klein
Laura Liebster
Kuong Ly
James Madden
Lisa Nash
Dori Peleg
Elizabeth Pell, former Vice President
Joseph Prates
Lucilia Prates, first President
Linda Roberts
Keely Sayers
Margot Schwartz
Kim Slack
Marla Stein
Jamie Stevenson
Jen Tosca
Nicola Truppin, President
Deb Wachenheim, HCFA Health Quality Manager
Lee Weinstein
Su Yoon
Alec Ziss

Thanks to Deb Wachenheim for the summary of our accomplishments, and for her dedication throughout.

Wednesday, October 17, 2012

Expectations of surgery: She's grateful, But

Alina Tugend's story
My father recently had his second knee operation in a year.  The first time, things went poorly.  His rehabilitation was difficult and months later, he still could not walk well or, even more important to him, play tennis.

He had the operation a few weeks ago, and he's already doing much better.  Different doctor, different outcome.  And perhaps, most significantly, different expectations.

"The first surgeon just raised my expectations unrealistically," my father said.  "He told me that in a few weeks I would be out on the tennis court."

I started thinking about how we manage expectations after my father's operation and after a friend, Amy, told me she recently had her cancerous thyroid removed.  The cancer was contained, but one of her vocal cords was paralyzed.  

She wasn't warned about this, but has since learned it is a common side effect of such an operation and can last up to a year.  It makes talking, eating and drinking difficult.

"It's not what I bargained for," Amy said.  "I'm grateful to be alive, but if I had just known, I would have been more prepared before and afterwards."

Advice to people considering surgery:  Consult a professional patient advocate, or read about the experiences of older and wiser patients on the Internet, before consenting to surgery.

Read a story about a man's ill-informed consent for surgery.  Thanks to Alina for her article, "What Did You Expect?  It Makes a Difference," excerpted here from the NY Times of Jan. 14.

Saturday, October 13, 2012

Healthcare acquired infections: Even Pres. Garfield

The saddest part of the story of the assassination attempt on Pres. Garfield more than 100 years ago is the medical treatment he received in the months after he was shot.  Joseph Lister had recently shown that antisepsis [sterile conditions] greatly reduced infections, so doctors throughout Europe had already widely started using carbolic acid and other practices.  But Garfield's doctors repeatedly poked into his bullet wound with unwashed hands and probes, causing infections that ultimately killed him.

The story is so so sad because it's so familiar.  Healthcare-acquired infections still injure many thousands of patients.  Evidence-based practices to prevent them often go unused.

The head physician treating Garfield even had the gall to bill the government the equivalent of $1 million in today's dollars for his treatment.  This, too, feels far too familiar, as payers continue to pay exorbitant prices on our behalf for medical errors.

Advice:  Read Candice Millard's excellent book, The Destiny of the Republic.

Read another president's medical story.

Tuesday, September 11, 2012

Ideal care in the Intensive Care Unit: You sleep well

Dr. Peter Pronovost's vision of care in the Intensive Care Unit:

Imagine your loved one is admitted to the ICU after cancer surgery, you are actively involved in his or her care at a level comfortable to you, providing information about symptoms and concerns, knowing what is going on and actively participating in decisions.  

Clinicians are using technology to predict what harms your loved one is at risk of suffering.  Using technology the clinicians have a checklist of the 200 therapies your loved one may need to receive on any given day, to prevent harm. You can see when they are due, when they have been done. And most are automated because the devices monitoring care are connected.  

You sleep well knowing the infusion pump would alert staff and shut off if your loved ones breathing slowed. You are confident that staff will have time to provide comfort for your loved one, listening to their concerns, holding their hand. You attend clinical rounds daily, or whenever you choose–sometimes by video conference sometimes in person.  

You are provided a daily report on how well your loved one’s symptoms were managed, how well the team performed those 200 things and the results it achieved. The staff continuously works to learn and improve. You can feel that the staff work as a team, and are joyful. You can feel you and your loved one are treated with respect and dignity. And amazingly, care is much less expensive.

All of this is possible today, technology is not a barrier. The engineers can do this now. The question is–do we believe and will we collaborate?

See another story about Dr. Pronovost.  Thanks to Dr. Pronovost for this excerpt from his speech on August 28 at the launch of the Gordon and Betty Moore Foundation's Patient Care Program. 

Friday, August 17, 2012

Patient Family Advisory Councils: Two hospitals' success stories

Each of the hospitals in Massachusetts now has a Patient/Family Advisory Council (PFAC).  The hospitals described their PFACs' activities over the last year, and members of HCFA's Consumer Health Quality Council reviewed, summarized, and tallied the responses, with Deb Wachenheim's help.  The CHQC members identified two hospitals' PFACs as role models, to be emulated by other hospitals:  Milford Regional Medical Center, and Beth Israel Deaconess Medical Center.  Leaders of those hospitals' PFACs described their activities at yesterday's meeting of the Massachusetts Coalition for the Prevention of Medical Error.

Kim Munto, the Director of Risk Management at Milford, described their PFAC's activities in her presentation, elaborating on them in a later interview.  Since their PFAC members are particularly attuned to health literacy, the application for prospective PFAC members is written in Spanish and Portugese, as well as in an English version.

Milford's PFAC also completely reworked the hospital's discharge instructions, translating clinical language into terms more often used by laymen.  The PFAC's suggestions greatly clarified the instructions about medications, e.g., which ones to stop taking, which to continue taking, and in what doses.  The PFAC also stimulated changes to the forms used to accurately convey information on patients as they transitioned from the hospital to each of three extended care facilities (ECFs).  The PFAC performed several rounds of intensive review, working with the three outside ECF organizations, in an example of collaboration across healthcare organizations that is all too rare.  

To help Milford begin providing mealtime menus to patients for the first time, the PFAC reviewed the menus and the presentation of the food, and then at a PFAC meeting, ordered dinners from the menu, which were delivered to the conference room.

For Beth Israel Deaconess Medical Center, Barbara Sarnoff Lee, the Director of Social Work, and Elana Premack Sandler, Project Leader for Patient and Family Engagement, described their four PFACs as components of a broader strategy of engaging patients.  BIDMC's Neonatal Intensive Care Unit (NICU) had been the first to set up a PFAC, followed by PFACs for the ICU, the entire hospital, and Universal Access.  BIDMC also engages 100 patient advisors in pairs on committee seats, department-specific groups with embedded advisors, focus groups for patients especially concerned with a single issue, and ad hoc projects.  

A PFAC member had mentioned how much easier it was to heal when it was quiet at night.  The hospital applied best practices to quiet the patient areas, creating a notable improvement in the eyes of patients surveyed in HCAHPS:  33% more patients said it was always quiet at night after these changes (60%) than before (45%).  

BIDMC had noticed an opportunity for improvement in pastoral and spiritual support for patients, based on FS-ICU (Family Satisfaction - Intensive Care Unit) data. Following redesign efforts with feedback, the FS-ICU scores improved.  Another effort, to improve the ICU's waiting rooms, also raised FS-ICU scores.  In a ripple effect of the improvement, seeing the change, hospital administrators then awarded more funds for renovating the waiting rooms. 

These are merely a few examples of many more at these hospitals, and indeed, at many other hospitals in the state. The Consumer Health Quality Council hopes to encourage hospitals to test and adapt these practices so their patients can also benefit.

This blog post was written by Ken Farbstein, a long-time member of the Consumer Health Quality Council, and professional patient advocate at Patient AdvoCare.  

Sunday, August 5, 2012

Enabling vs. self-care for caregivers: Mother Theresa's job is taken

Here’s more information Dr. Diana Denholm, author of The Caregiving Wife’s Handbook, shared with me when I interviewed her a few weeks ago:

While I was totally unprepared for being a caregiver, as a therapist I knew about behavior and communication. I began to blaze my own trail by employing that knowledge in caring for my husband. I created and refined specific methods. When I found they worked consistently over time, I decided to share them with other caregivers. Because there is often so much anger and resentment in the caregiving process, one of my goals is to shift caregivers from using adversarial methods to using collaboration. This will result in respect and compassion for each other and a more peaceful and loving household.
When I asked her about typical problems for caregivers, she shared that a huge issue is to avoid enabling. Enabling, also called codependence, is doing for someone what they should be doing for themselves, allowing (enabling) them to continue their weak or inappropriate behavior. A common mistake caregivers make is thinking that everything is their responsibility. Women may tend to do this a little more than men because they are nurturers by nature, while both men and women may jump right in because their spouse’s life is at stake. This allows them no spare time and keeps them from caring for themselves. To avoid this trap, Denholm suggests that you work together, rather than enabling or controlling the ill person. Don't do for the cared ones what they really can and should do for themselves. Enabling creates invalids. Don't micromanage what they are able to do, even though it may be far from perfect. The less you enable, manage, or control, the more time you’ll have for yourself and the less stress you’ll experience. When appropriate, be glad to say, “It’s not my job,” even though others might think otherwise.

The upside is that you’ll actually create precious time for yourself by not taking on jobs that should be done by others – including your loved one. If you do less enabling with everything and everybody, you'll create more energy for yourself and you'll have less anger. Mother Theresa's position has already been filled! 

When I asked about self care, Diana told me that with more time you’ll have more opportunities for self care, if you give yourself permission. That's hard to do, because we're taught from childhood to be selfless. So, if the only reason you’re willing to care for yourself is to be a good caregiver, that's good enough. Self care can be very simple. No matter the income level, you can do something whether it’s meditating in the bathroom, walking around the block, going to a ball game with friends, or spending an hour at the spa. One woman Denholm interviewed for her book is from Argentina. Each year, she visits her family there for a month while her husband is well cared for at home. She tells friends and family that if her husband dies while she’s away, not to call her. “Just put him on ice and I’ll take care of it when I get home." And she's serious! In order to protect her own health, she’s willing to risk criticism from everybody, and I commend her for that. She also knows she's not going to change the fact that he'll die. She believes, as many people do, that if the sick person wants you with them at the end, they'll wait to die. Caregivers have to do what's right for them, as long as they have ensured the safety and care of the patient. 
Self-care can take many forms, such as managing your emotions and stopping energy drains which will be the subject of another blog, and is discussed in detail in the Handbook. 
Read another caregiving story, and read Diana's book, The Caregiving Wife's Handbook." Thanks to Diana for the interview, and to Elana Fiske of Hunter House Publishers for connecting us.

Thursday, August 2, 2012

Privacy about depression on Facebook: Even to online "friends"

Alex is one of the young people whose experiences with psychiatric medication Kaitlin Bell Barnett chronicles in her recent book, Dosed: The Medication Generation Grows Up.

Alex, who began taking antidepressants for anxiety, depression and obsessive-compulsive disorder at age 10, had been a loner since childhood: He kept to himself and was happy about it. But as he grew older, he had periods of extreme anxiety and depression during which he felt an uncharacteristic need to reach out to others.

While in his early 20s, Alex quit his medications, frustrated that he had tried a series of different drugs without seeing his symptoms disappear. A few weeks after stopping the drugs, he fell into a deep depression. Alex had previously experienced depressive episodes during which he was seriously suicidal, but this time he didn't actually want to kill himself - he was merely having thoughts of hopelessness. Unfortunately for him, he decided to obliquely share these thoughts of hopelessness on his Facebook wall, leading to a harrowing experience:

Someone he'd met through one of the social network's groups interpreted the post as a suicide threat and somehow notified the public safety department at Alex's college, which in turn sent the police to Alex's house.  The police took him to the emergency room, where, although Alex insisted vehemently he wasn't suicidal, staff judged him a threat to himself and had him involuntarily committed to a psychiatric ward for two days.  He considered the experience ironic, given his attempt to be hospitalized at the same unit four years earlier, when they told him they wouldn't admit him unless he had a plan to kill himself. The take-home lesson is:  he is far, far more careful about what he discloses, even to online "friends."  

Had Alex actually been suicidal, his Facebook friend's actions might have saved his life. But as it was, it caused Alex a great deal of unnecessary trouble and anguish.

The episode highlights the complications of sharing dark thoughts and musings over social networks - and raises the difficult question of what the networks and the people on them should do to help or intervene. 

Kaitlin's Advice:  If you're feeling like you really need support and want to reach out to people over social networks, you might want to consider contacting people individually through a chat or a message, so there's an opportunity for back-and-forth communication and your words don't get misconstrued. Facebook users should know that if they post an update with suicidal content, anyone who can view their updates can report it to the social network's administrators. If someone does report suicidal content, the user who posted it will receive an email with a link to begin a confidential chat with a suicide prevention hotline worker. Facebook also has a resource center giving advice about how to help someone who has posted a suicidal comment

Mental health blogger Natasha Tracy has a great post with advice about how to respond if someone posts a suicide threat on Facebook

Read another anti-depressant medication adherence story.  Thanks to Kaitlin for this excerpt from her book, Dosed:  The Medication Generation Grows Up, and to Bethany Sales of Newman Communications for connecting us.

Wednesday, August 1, 2012

Overtreatment for heart conditions: You were right, Dr. Lown

A box of Florida oranges arrived on retired cardiologist Bernard Lown's doorstep last winter from a patient he had seen more than 40 years earlier.  The man had come to him for a second opinion after another doctor had recommended valve surgery, he recalls.  Dr. Lown told him it wasn't necessary, that it would be decades before he needed it.  In fact, it would be four.  The oranges came with a message:  you were right.

Back in the early 1970s, Dr. Lown and his colleagues had realized that blockages in heart arteries weren't the ticking time bombs that people perceived them to be.  Indeed, they could be treated effectively with medication, a healthy diet, and exercise.  They found that advanced testing and the surgery that frequently followed were rarely necessary, and published their findings in the New England Journal of Medicine in 1981.  Accordingly, his medical practice had stopped referring patients with significant but stable heart disease for imaging tests.  

Dr. Lown is the grandfather of a movement in medicine today to spotlight and reduce overtreatment.  In April, nine medical specialty groups, including the American College of Cardiology, published lists of tests or treatments that doctors should avoid, in a campaign called Choosing Wisely, launched with support from the American Board of Internal Medicine Foundation. 

Read one of Dr. Lown's stories on overtreatment.  Thanks to Chelsea Conoboy, from whose article of July 29 in the Boston Globe Magazine this is adapted.  

Thursday, July 26, 2012

Advance planning for the end of life: My answer to healing

Tory Zellick's story:
When we were much closer to the end of my mother's life, unbeknownst to us, she developed hypercalcemia [raised calcium level in the blood].  I was 24 at the time, and had already been her care partner for six years.  We'd started butting heads, as mothers and daughters do.  

Because of her shift in awareness, we started searching for a brain tumor.  Nothing was found to explain the change in her cognitive function.  To restore family balance, Dad whisked Mom away for a one one vacation.  While on the trip to Mexico, she got a urinary tract infection.  The kidney and liver can only process so much, so the calcium built up even more in her blood.  Her hallucinations continued.

We went to the Emergency Room of our hospital in Chico, California.  When admitted through the Emergency Room, you tend to deal with a hospitalist, not a physician who is familiar with one's illness/ailment.  We called her oncologist, who turned out to be out of town for the week.  But because we'd had the conversations with my mother, we knew she did NOT want cardiopulmonary resuscitation or a feeding tube.  We'd had the talk about the durable power of attorney.  She'd explained everything that she did and didn't want.  We'd contacted the lawyer, and had Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders already written.  We had a full understanding of what she felt was a good quality of life.  

As it became clear that end of life decisions needed to be made, we felt comfortable that we were fully prepared as a family.  We had what I call our "care team":  physicians, insurance broker, attorney, etc.  Being organized allowed me to have the information I needed at my fingertips to make appropriate decisions, and call the correct people when I needed certain questions answered, tests run, or scans compared.  

After comparing scans of Mom's liver over the past six-week period, it was apparent that the cancer had metastasized to her soft tissue, and that the hypercalcemia would be a quick and painless way for her to exit this life.  Quality of life was something she valued much more than time itself.   As a family, we decided to take her home and allow her to pass in the home she had raised her children in, as she had requested when we had the discussions about end-of-life when she was relatively healthy. 

This kind of situation can be overwhelming.  Your incredible, functioning brain will quickly begin to misfire.  But if you have everything organized, have had the difficult conversations about end-of-life and have the appropriate documents in order, it's much easier to make the decision best suited to the patient.

Years earlier, we'd been able to have the conversations about the end of life because my grandfather had been grappling with renal cancer for as long as I could remember.  My other grandfather had died when I was five, so we'd always talked openly about death. 

We weren't raised in any Western religion, but those who have some spirituality should contact their reverend, priest, etc., if they're looking for a guide to have such conversations.  We looked deep in ourselves to know what to do.  We sat in the living room, and discussed each of our wishes.  Our parents presented it to us that we should all know what everyone's wishes were.  An 18-year-old could get into a car accident and suffer a traumatic brain injury; this talk wasn't just for the oldest or sickest person in the family.  By incorporating the whole family and not just one ill individual, it helps by not isolating the patient about their own personal mortality.  It's not pointing the finger at any one person; it's something that everyone should do.

After my mother passed away, I created a workbook full of helpful tips and worksheets to help any caregiver avoid any unnecessary suffering.  It's my answer to healing, to help other people.  Either way, this journey will define you, when you're faced with a disease like this.

Tory's book, The Medical Day Planner: The Guide to Help Navigate the Medical Maze, provides insight and guidance to patients and their families and caregivers.  It's available at Barnes and Noble and Amazon.com.  Check out her website:  AllThingsCaregiver, and read another caregiver's story.

Thanks to Claudia Schou of Media Boutique for connecting us.

Monday, July 9, 2012

The Caregiving Wife: To blaze my own trail

Dr. Diana Denholm's story:
I'd watched my mother be a caregiver for many years for my father, watching him decline, and not being able to do anything about it.  I saw it as a daughter myself, sometimes critically, because you can't get caregiving into your head until you yourself do it--it's such a huge difference.  And caregiving for a spouse is unlike any other caregiving situation.

When I married, I got the unfortunate opportunity to see it through my own eyes--the person I’m in love with, watching him die.  Shortly after he proposed, my husband got colon cancer, which he survived. Then he developed Congestive Heart Failure. Since he had an artificial valve put in at age 40, you could hear his heartbeat.  With CHF, he then got Cheyne-Stokes syndrome, so at night, I could hear his heart stop for 25 seconds, and then start up like a train leaving the station, building to full speed, then slowing down to a stop again for another 25 seconds—all night long.  And soon, without realizing it, I became my mother--the same challenges.

We moved to California for a heart transplant.  Then the next round of disasters started, as the anti-rejection drugs tend to destroy your body.  Among a laundry list of illnesses, he developed skin cancer, depression, kidney failure, and Parkinson's Disease.  He had extensive dialysis, falls, bleeding out - one trauma after another.  

After several years on dialysis, he reached the point where he'd had enough.  Stopping the dialysis, he died five days later.  Even with my background as a medical psychotherapist, I was never really prepared for caregiving.  I had to blaze my own trail, through eleven and a half years, with nowhere to turn for answers.  There wasn't a place to find a road map to get through this with any semblance of sanity or semblance of self.

Caregivers commit suicide, become the objects of abuse, or even become abusers themselves.  None of that needs to happen.  My book is a wellspring of hope so you can make your life work even then.  Marriages disintegrate when somebody is ill; a lot of damage occurs to the relationship.  In the book you learn effective communication, specific tools and procedures, and very collaborative ways to work through all your challenges with compassion for yourself and for each other. You can reclaim the loving relationship you thought you lost forever.

Dr. Denholm's Advice for caregivers:
Establish expectations, and get everyone involved to be on the same page, e.g., what you're willing to do and not do, about legal and financial matters, visitors, sleep, sex, intimacy.  There are resources, and my book, The Caregiving Wife's Handbook, available at my website.  

Read another caregiver's story.  Thanks to Diana Denholm, PhD, LMHC for the interview, and to Elana Fiske of Hunter House Publishers for connecting us.