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.  

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.

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.

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.