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It Took A Long Time, But She Did It Her Way

Posted By David Ziobro, Tuesday, March 12, 2013

This blog post is a reprint of an article from the February/March 2013 (No.105) issue of Mainstay, a regular newsletter produced by the Well Spouse Association ( Reprinted with permission.

"Well, at least they went quickly and didn’t suffer.” That’s what people say when someone dies. I understand what they mean. But she didn’t go quickly. No, it was a long slow steady decline. Did she suffer? No, with the pain meds, and her loss of memory, she didn’t suffer, but I did.

When we were told that the cancer had spread to her brain, the clock started to tick. Life went on as much as it could. She was able to do some of the things she enjoyed like reading, crafts, and needlepoint. In time, those activities became impossible, and TV and the two hours a day with her aide became her life. Our aide was a friendly young woman; they would sit and talk about all kinds of things, and they liked to look at our photo albums. Our aide was planning a trip to Disney World, and my wife really enjoyed helping her plan it. The trip ended up being scheduled the week after my wife passed away. Her aide was not able to attend the viewing or the funeral. It was almost like my wife planned it that way.

As time passed, we entered the beginning-of-the-end dates. When we were given the diagnosis, the doctor simply would not give us a time frame. The internet however gives you lots of information--we were looking at a 16 month time frame, give or take. I was finally able to get the doctors and the hospice nurses to give me a better idea after many conversations. They were all given with reluctance, and usually accompanied by "everyone’s situation is different.” When we hit the beginning of the possible time frame, it got interesting. By this point I had taken the 90 day FMLA leave from work, and I ended up taking another 90 day leave of absence as well.

As with most everything in her life, my wife exceeded expectations: she lasted 23 months. During the final 6 months of her life, we were in the "anytime” zone. Every morning was difficult for me. Was today the day? Remember when you had your first child and, inexperienced and fearful, you would walk into their room at night and listen for them breathing? Well there I was, going into her room in the morning wondering if this would be the day. I would hope upon opening the door she would move in some way so I would know right away. When she didn't I would walk up slowly and listen, a mixture of fear and then relief, followed by disappointment and then guilt. I had six months of that.

In the last year, my wife’s mental capacity diminished to the point where we could no longer really converse. We still talked, but I understood that she was not there, and our conversation would be forgotten as quickly as it started.

The good part was that she was totally unaware of her situation. She knew she was sick, but figured she’d get better and return to work soon. My wife had retired from her position as an elementary music teacher four years earlier. She began to ask about school and I would explain that she had retired. "Oh really, when did that happen…I don’t remember.” We would talk and it would be forgotten. Every night we would go through the routine about how she was retired. Each morning, we were up early and would go through the same conversation. I had to move her car to her mother’s house around the corner for fear that she would just jump in and drive away. She had not driven since her diagnosis in 2009. Then we had to hide the car keys for all our other cars. Notes on the mirror, on the door, nothing seemed to help. Sometimes she would call the school and arrange to get a sub. The administrative assistant, who knew my wife well, would handle these phone calls with patient understanding. It turns out she enjoyed just talking to her. The rest of the staff were also amazing; they understood and dealt with it.
Every morning was difficult for me. Was today the day?

So when someone says, "well, at least they went quickly and didn't suffer,” understand what suffering is. There are all kinds of suffering. My wife passed away 23 years after her diagnosis of breast cancer. She did better than expected, and did things her way. She once told me "I’m a difficult patient, I know that. It’s my life and I want to know what is going on. I don’t care if they think I’m a bad patient.” In reality, according to her doctor, she was a good patient. He understood why she was the way she was. When she passed, her doctor told me what a strong person she was. He also told me what a fantastic job I did in taking care of her. I tried the best I could. It was difficult. Her doctor gave me a big hug when he told me that. Men don’t hug usually. It was so special because it gave me the feeling that I did good. The patient is the one being treated; the well spouse is often forgotten. He was telling me I was not forgotten. That was special.

Dave Ziobro, Former Well Spouse

Tags:  caregiving  chronic illness 

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Guarding Lives

Posted By Lauren Guth, Tuesday, March 5, 2013
I’m treading water in the deep end of an Olympic-sized swimming pool, looking up at my lifeguarding instructor, who is standing dry by the side of the pool with a whistle around his neck. There are five other pairs of students in my class, also treading water, listening intently to the instructions: "Remember, when you go to save your partners, make sure you swim behind them before holding them. People that are drowning are terrified and will instinctually grab a hold of you. If you go down, they go down with you.” In the world of healthcare, our providers are often the lifeguards to their drowning patients. They are the people that will listen, teach and guide their patients toward
a path of wellness.

I was lucky. When looking for a post-doctoral fellowship, I came across an e-mail on a psychology post-doc listserv that described an opening to work in "integrated primary care.” The image of my dream job that I carried around with me in my head always involved working with a multi-disciplinary team, where patients could receive complete, well-rounded "one stop shopping” healthcare. A team of experts at their fingertips, in their community; people they could trust and know who would work collaboratively to keep them or make them well. When I inquired about the position, I had no idea this decision would alter my career path in such a significant and wonderful way. As I treated patients, I watched them form relationships not only with me, but with a team of their providers, nurses, and medical assistants. I watched them connect, trust, and truly become well.

I was hooked. When my time came to an end in my postdoctoral position, I knew I wanted to work in a Family Medicine Residency where a team of experts worked collaboratively in pursuit of patient wellness. I wanted to work in a rich environment that felt more like a family than a workplace and treated patients with warmth and dedication. When I interviewed for my current position, I found what I was looking for. I felt welcomed and included, and I instantly knew I could work collaboratively with everyone here. I knew if I felt this way, certainly the patients would feel the same as well. As a Level-III Patient Centered Medical Home, JFK Family Medicine embodies the values of collaboration, team-work, and complete patient wellness. As a teaching facility, JFK offers well-rounded, quality training to its Family Medicine Residents, preparing them to provide the best possible care to their patients.

How do providers offer the best care to their patients? Is the power of a collective team stronger than any individual person, or is a team only as strong as its members?

I became curious. I wondered to myself, "But how? How do providers offer the best care to their patients? Is the power of a collective team stronger than any individual person, or is a team only as strong as its members?” I observed our residents and providers connecting, communicating, laughing and playing. I listened to our residents and providers talk about painting, hiking, exercising, cooking, and relaxing. I realized that patient wellness begins with provider wellness, even though many of us often feel selfish focusing on our own health; it can often be a last priority. After all, we did choose a career path directly related to helping other people. Yet, it is actually quite essential that we focus on our own wellness. As my lifeguard instructor aptly stated, "If you go down, they go down with you.”

I became inspired. Why not apply the same values for our residents that we do for our patients? Our residents and providers need permission and space to self-reflect, connect in a meaningful way, to
laugh and play. They need a place where they can feel heard, where they can trust people are working collaboratively to keep them well. I began to facilitate monthly wellness groups with our residents,
where we connect over difficult patient interactions, discuss ways they have grown personally and professionally since beginning training, and things they miss from their lives since beginning residency. We go outside. We laugh. We relax.

And the answer to my question became clear. The power of a team can most definitely become stronger than any one person, but if each team member is feeling well and knows the team has a commitment to his or her wellness, then the power of the team is enhanced that much further. As we guard the lives of our patients, we also need to remember to guard our own.

Lauren Guth is a licensed psychologist and currently the Behavioral Scientist at JFK Family Medicine Residency Program in Edison, NJ. She received a Doctorate of Psychology and a Master’s of Education in Human Sexuality from Widener University. Her interests include integrated primary care and resident wellness.

Tags:  collaboration  integrated care  resident wellness 

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Uncertain Responses to Weingarten’s “Sorrow”

Posted By Barry J. Jacobs and David Seaburn, Tuesday, February 26, 2013

Barry Jacobs: Occasionally, a journal article arrives that knocks the pegs out from under one’s clinical assumptions. "Sorrow: A Therapist’s Reflection on the Inevitable and Unknowable” by renowned narrative and family therapist Kaethe Weingarten, Ph.D., in the current issue of Family Process, is one such essay (click here to access the full-text pdf for free until March 8, 2013).

Written in crystalline, evocative prose, its beauty and heft alone would recommend it. But its topic—helping medically ill clients make peace with ongoing suffering—is essential for medical family therapists to continually grapple with. And Weingarten’s conclusion (following her synthesis of a literature review on "chronic sorrow” and reflections on four individual psychotherapy cases) stuns: Illness may disrupt the self-narrative but the path to peace doesn’t lead toward meaning-making so much as toward tolerance of the incoherence of self and suffering.

While incoherence is not an unfamiliar state to me, it is not what I usually aim for in my clinical work with family caregivers and ill or disabled care recipients. I’d say I’m looking for silver linings, for the expanded sense of self that can come from increased agency and communion, for the solace of greater appreciation for continued life. Weingarten is having none of this. She ends her essay with a Buddhistic image of sufferers swimming in the ineffability of suffering. She exhorts therapists to accompany but not try to save them.
Ineffability of suffering

When confused (or in need of a laugh or even a clever insult), I always turn to the wisest, most sorrowful person I know, Dave Seaburn. I thought that, as one of the early progenitors of both family-centered primary care and medical family therapy, he might have some interesting thoughts about Weingarten’s essay. As an ordained minister as well as a daily practitioner of meditation, he could also reflect on the spiritual implications of Weingarten’s ideas.


Barry Jacobs: Weingarten talks about "chronic sorrow” as a response to the disruption in a person’s sense of self because of chronic illness or disability. How did that strike you?

Dave Seaburn: I like the concept of chronic sorrow and I think it resonates with many people who find that their experience of personal loss (and person loss) is unrelenting and poorly understood/appreciated by others. It is non-pathologizing, which is almost always good because it frees us to see things in greater complexity, something that traditional diagnoses (in the wrong hands) often discourages.

Nevertheless, I thought Weingarten's insistence that this diagnosis was the one and only explanation for each of these cases, also did a disservice to each person’s suffering. I feel certain I saw major depression and maybe character disorders also thrown into the mix without that ever taking away from chronic sorrow as a reasonable, though not all-encompassing,frame. Perhaps her insistence on the exclusivity of this term is because of her own personal experience as a breast cancer survivor (which obviously trumps my lack of similar experience).

BJ: I thought she used several effective metaphors to describe the challenges of living with chronic sorrow. I particularly liked the "boatman’s plight.”

DS: The boatman's plight is excellent. It entails jettisoning all but what is most essential in order to stay afloat in this life. She frames this negatively and I understand why. But in another sense, it is a wonderful metaphor for what we all should address: What would each of us find absolutely essential to keep our personal boats afloat?

BJ: What I’ve struggled most with in trying to understand her essay is this idea that suffering can’t be wrapped in some redeeming meaning—that we can’t lessen the pain through intellectual means.

DS: Her discussion of the "incoherence of suffering” was terrific. It reminded me of those soldiers who debriefed concentration camp victims at the end of WWII; they were the ones who attributed meaning to the inmates’ experience ("noble suffering”) while the inmates themselves could barely speak coherently about what was done to them, let alone attribute some meaning to what they had suffered.

I like the Buddhist notion that "self” is an unreliable concept. As with subatomic structures that can be both "particle” and "wave”, perhaps we are better off to think of the "self” as a wave and not make it so firm that we count on it lasting in a single (dependable and indestructible) form for longer than a day or two. In my case, seconds.

BJ: Her whole tone seemed a bit too negativistic to me—too doom-y. Perhaps I’m still looking for "pink clouds.”

DS: I don’t know. It seems to me that chronic sorrow is something that we should all be experiencing to one degree or another, if we are inclined to look closely at our circumstances. I am not being cynical. I admire those, and I know many of them, who do not operate with much if any insight regarding their life circumstances and yet live happily and often do remarkably good things for those around them. I wish I was part of that majority. But there are also those who recognize that decline is built into life--that we lose dreams and options and paths to follow and physical capacity and spiritual certainty and, finally, time itself. That is the way of things.

I often fantasize that just before birth we understand all of this, but birth itself is so traumatic that we lose that understanding and largely go about our lives not knowing what being here is all about. Consequently, we settle for what we can do and understand--we work, we procreate, we watch the Sixers on TV, we achieve. If we remembered what we knew just before we careened down that canal, I think we'd realize that what we are here to do, more than anything else, is to appreciate this holy mess, with all its constant suffering and occasional brilliance, and to live accordingly.


Barry Jacobs    David Seaburn
Barry Jacobs and Dave Seaburn are family medicine educators and long-term collaborators. Barry is the Director of Behavioral Sciences at the Crozer-Keystone Family Medicine Residency in Springfield, PA and the author of The Emotional Survival Guide for Caregivers. Dave recently retired from a distinguished career as the behavioral science faculty in the University of Rochester Family Medicine Residency and has taken to writing novels, including his latest, Chimney Bluffs, a novel about finding one's way through tragic loss and sorrow.

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“Amour” or Love among the Ruins

Posted By Carol Levine, Tuesday, February 19, 2013
Nominated for five Academy Awards, "Amour” is a film about love and death. (Read no further if you haven’t seen the film and don’t want to know who dies and how.) The setting is Paris, the language French, but any resemblance to a conventional French film about light-hearted romance or a ménage a trois ends there. The married lovers in the film are in their 80s, as are the main actors (Emmanuelle Riva and Jean-Louis Trintignant). Anne is a retired piano teacher; Georges is retired as well (not clear whether he was also a piano teacher or a musicologist). Their daughter Eva (Isabelle Huppert) is a musician.

"Amour” was directed by Michael Haneke, an Austrian filmmaker whose previous films were, to put it mildly, grim. "The White Ribbon” portrays the abuse and humiliation of children and women in a small German town just before World War I. "The Piano Teacher” is an abusive and self-mutilating woman. "Funny Games” features sadistic serial killers. So it would be unrealistic to expect "Amour” to be cheerful or sentimental in its treatment of old age and illness.

His penchant for violence aside, Haneke is a skilled filmmaker, and this long (very long) film is carefully constructed to achieve an effect. Exactly what effect he had in mind is still unclear to me, and I would have to see the film again (which I have no intention of doing) to figure this out.

The opening scene of firemen breaking down the door to Anne and Georges’ apartment and then holding their noses because of the smell sets the stage. Anne’s corpse, carefully arranged with flowers at her head, is our first image of her. The film then shifts to a concert hall, where the audience, including Anne and Georges, stares at us-- the movie theater audience--for a long (very long) time before the pianist, who we find out is Anne’s former student, begins to play. Are we meant to be a little uneasy right from the start?
Amour movie poster
Could I kill someone
I love to end that person’s suffering
and mine as well?

Would I want
someone to
do this to me?

The couple’s comfortable retirement is abruptly interrupted when Anne has a sudden episode of blanking out. An operation to clear a blocked carotid artery is unsuccessful and she comes home in a wheelchair to be cared for by Georges. Haneke shows the daily routines of caregiving for a partially paralyzed person—bathing, going to the toilet, incontinence, feeding, and range-of-motion exercises. In documenting Anne’s decline, he dwells, almost lovingly, on the ravages to her body and mind. It is a realistic glimpse of the gritty side of caregiving, yet these scenes also turn us into unwitting voyeurs, invaders of Anne’s carefully protected privacy.

At some point in the film the story shifts to Georges. He wants to take care of Anne on his own, but he finally hires nurses for shifts three times a week. (Although the film credits list these roles as l’infirmieres –nurses – they seem more like home care aides, assisting with personal care, not skilled nursing care.) He fires one after she mistreats Anne in some way.

There is no indication of the passing of time in the film. We don’t know whether the illness trajectory is happening over weeks or months. The toll caregiving takes on Georges begins to show in his stooped posture, shuffling walk, and defeated look. He resists Eva’s ineffectual efforts to help and goes so far as to lock Anne’s door when Eva visits. In one scene a pigeon flies into an open window, and Georges chases and finally shoos it out the window.

In his first act of violence, Georges slaps Anne in frustration after she spits her drink in his face. Anne moans in pain (psychic or physical?) until Georges calms her with a story from his childhood. And then, he takes a great big pillow and suffocates her. The scene is predictable but shocking nonetheless. She takes a long (very long) time to die, her leg rising and falling in an odd reminder of the range-of-motion exercise we saw earlier. Her body resists what she has said she wanted to happen.

Georges buys the flowers we saw around Anne’s corpse at the beginning. He catches a second pigeon that has flown in the window, covers it in a blanket, closes the window. He seems to caress the pigeon. He writes a note about letting the pigeon go (but we only see him let the first pigeon go). And then in a dream sequence he and Anne leave the apartment. In the final scene Eva returns alone to the empty apartment and looks squarely at us.

Apart from the exceptional performances of all three leads, what can be said about this film? It is certainly a love story, but a very claustrophobic and exclusive kind of love. There is no room in this couple’s relationship for other people, even their own daughter. Eva seems self-absorbed but neither of her parents express any real interest in her or their grandchildren. Their conversations are the kind that might occur between acquaintances, not close family members. At one point, Eva tells her father she is concerned about him, and he responds, "Your concern is no use to me.” He treats her dismissively, even cruelly. And Anne does not want her daughter to see her in her debilitated state.

If there is no room for Eva, there is even less room for health care professionals. Dr. Bertier, the family doctor, never appears and does not seem to be involved beyond the operation. Once discharged from the hospital, Anne makes Georges promise that she will never go back. She does not want further medical treatment. But in a country with universal health care coverage, there is no indication of home care support other than the aides Georges hires on his own. Hospice or home care with adequate pain and symptom control might have made a difference, although not as dramatic a story. I leave it to clinicians to suggest what interventions might make someone like Georges more responsive to assistance.

And finally what are we supposed to think about Georges’ killing of Anne? She was clearly at the end of life and he was at the end of his ability to cope. Was suffocating her an act of compassion or an act of desperation or possibly both? Whose suffering was greater? What happened to Georges? I think we are meant to understand that he killed himself, after he killed Anne and (maybe) the second pigeon. He certainly disappears from the film.

Perhaps Haneke meant for the audience to ask themselves, Could I kill someone I love to end that person’s suffering and mine as well? Would I want someone to do this to me? Anyone who has seen a family member or friend suffer at the end of life has undoubtedly asked themselves these questions. And many people will see Georges’ act as a final act of love. But saying that you would end someone’s life, violently if that were the only option, is quite different from actually doing it. Most people would stop short. I think that is a good thing.

"Amour” ends and the credits roll. The audience goes home. Maybe they talk about the film, maybe they argue about it. Some say that if Anne were the caregiver, she would never have killed Georges. Some say physician-assisted death is the answer. Some protest that this would not have helped Anne in her demented state. Some appeal to religious or humanistic principles. Some say, "What was up with the pigeons?” Some say, "Come on, it’s just a movie!” Then they move on with their lives, putting aside unpleasant thoughts about illness and death.

If there is a message in this film, let it be that no one should face devastating illness—their own or another person’s--alone.


Carol Levine
Carol Levine directs the Families and Health Care Project and the Next Step in Care campaign at the United Hospital Fund in New York City. She is a Fellow of The Hastings Center, a bioethics institute, and writes frequently about ethical issues in health care. She is editor of the forthcoming anthology Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2013).  Read her previous CFHA blog on a real-life caregiver mureder-suicide here.

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On Boarding New Behavioral Health Consultants into Primary Care

Posted By Wendy Bradley, Tuesday, February 12, 2013

For many therapists, social workers, and psychologists working in the culture of a primary care is completely foreign. At Southcentral Foundation (SCF) in Alaska, this is no exception. SCF is a fully integrated level 3 medical home, so ensuring that a Behavioral Health Consultant (BHC) is the right fit for the clinic, has a comprehensive orientation and gets on-going training support is imperative aspect to the success of the program.

To promote a systematic approach to BHC recruitment, selection, and development, SCF documented the BHC role, knowledge, skills, abilities, and qualifications in a formal BHC job description. BHCs are licensed mental health professionals qualified to offer services in the full range of conventional counseling situations, such as depression, substance abuse, family relationships, and child development, as well as in the behavioral management of medical conditions, such as diabetes and chronic pain. Requirements include a master’s degree or doctorate in a mental health field; at least one year of supervised clinical work experience; and training in behavioral medicine and health psychology, as well as social systems and familial aspects of psychological and medical conditions.

Attributes associated with success include flexibility, resourcefulness, and initiative, since BHC effectiveness depends on providing prompt access and a focused and individualized response in order to meet customer-owner and primary care provider (PCP) needs. A key focus of the BHC interview and selection process is ensuring that every new hire is a good fit – not only with customer-owners, but also with all members of the integrated care team (ICT). Of candidates interviewed, some 20-30 percent demonstrate the combination of characteristics that predict a good fit: good people skills, team orientation, knowledge and experience in a variety of situations, good judgment, and the ability to think on one’s feet.

This systematic process of
hiring for fit, orienting new
BHCs and providing on-going support have been the
foundation for continuity
and consistency in the
program and has created
the environment for
continued success.

SCF has created a comprehensive set of BHC core competencies. These core competencies embrace the dual roles of the BHC (behavioral provider and care team consultant), the required knowledge and skills required (for assessment, triage, intervention, outcomes analysis and documentation), and best practices to meet the cultural and age-specific needs of SCF customer-owners. These core competencies provide the foundation for BHC orientation during the first 12 weeks on the job, as well as ongoing performance evaluation and improvement.

A newly hired BHC shadows other BHCs for six weeks, starting the first week with the clinical supervisor, and then working with the BHC peer mentor. The mentor is responsible for the BHC’s orientation, training and ongoing support. A new hire may also be assigned to shadow a PCP in order to gain insight into ways BHCs interact with medical providers to gain their trust and build their knowledge. During the last week, the clinical supervisor and BHC mentor, and then the other BHCs in rotation, shadow the new BHC. During peer shadowing in the orientation period, the new hire also becomes familiar with SCF’s care guidelines and documentation practices. This approach to orientation serves as an active mechanism for knowledge transfer to the new employee, with on-the-job reinforcement including opportunities to demonstrate learning and get immediate feedback.

Performance Management and Improvement

BHCs use four methods – peer shadowing, chart reviews, peer supervision, and annual work plans – to ensure that BHCs share best practices while establishing consistency in the approaches used across the group. All four methods provide opportunities to review and reinforce the BHC core competencies and fundamental principles of BHC integration, such as the principle that the primary customer of the BHC is the PCP and that the primary competency of the BHC is assessment, not therapy. Since 2009, three BHC mentors work alongside the clinical supervisor to ensure consistency in the use of these methods.

Mentors shadow BHCs on a rotating schedule, using a shadowing checklist to observe and evaluate the demonstration of competencies in the four phases of a BHC visit. Representative competencies include refining the reason for referral to the BHC (Introduction Phase), assessing customer-owner strengths (Assessment Phase), discussing options (Intervention Phase), providing the PCP with a concise overview and recommendation (Follow-up Phase), and concluding the interaction – all within 20 minutes. Although BHCs use the feedback to improve their knowledge and skills, findings are not used in the formal evaluation process. BHCs also complete quarterly chart reviews using a chart review checklist to examine several charts from each BHC. This approach promotes consistency of documentation.

Peer supervision is a one-on-one discussion and case review facilitated by the clinical supervisor that supports the delivery of quality behavioral health care, including clinician self-care. For example, if the customer-owner says something that triggers issues for the BHC personally, these review opportunities provide the BHC with an outlet for discussion. Lastly, BHCs work with their managers and clinical supervisors to design individual BHC work plans based on the BHC core competencies as well as each BHC’s areas of interest and potential innovation. These work plans and agreed-upon goals serve as the basis for the BHC’s annual performance review.

BHC performance evaluation follows SCF’s organization-wide performance management model. It includes an annual meeting of each BHC and supervisor to develop an individual performance action plan, with goals and timelines, and a year-end supervisor appraisal of the individual’s performance against the plan. A key tool in BHC performance planning is the progression checklist, which outlines the competencies required for promotion (e.g., from BHC I to BHC II), and provides a tracking mechanism to document training and experience on the job.

This systematic process of hiring for fit, orienting new BHCs and providing on-going support have been the foundation for continuity and consistency in the program and has created the environment for continued success.

Wendy Bradle
Wendy Bradley LPC is clinical improvement advisor at
Southcentral Foundation in Alaska. She developed and provided clinical oversight to behavior health integration in primary care--the program has been successfully established for the past 8 years


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Invite Someone New to the Room

Posted By Randall Reitz, Tuesday, February 5, 2013

Disrupting Status Quo


It was a privilege to have Dr. Wendy Watson as my doctoral chair at BYU. My dissertation research implemented her Systemic Belief Therapy with families with a child with diabetes. During the clinical practicum that supported the research she shared dozens of wisdom bits—some about therapy, some about humanity, others about life. The one that has stuck with me is: "When feeling stuck, invite someone new to the room.”

As I understood it at the time, this axiom had 2 applications in the therapeutic environment: if a clinician is stuck with an individual patient, either the patient should invite a loved one or the clinician should invite a professional colleague. Wendy Watson is one of many founding mothers and fathers of collaborative family healthcare. Our movement and our association (CFHA) have grown considerably from the days when we could speak truth in axioms but lacked the sustainable clinical models and research base to justify our inchoate truths to the broader healthcare system.

Reflecting on the wisdom of inviting someone new to the room, I would suggest that the science and practice of bringing a professional colleague into the room has blossomed while the family half of the equation has been somewhat overlooked. That is, most of our best integrated care systems our experts in collaboration (i.e. integrating primary care and behavioral health), but far fewer are experts in family (i.e. health interventions that harness the power of non-clinical relationships).

As is implied in CFHA’s name, I believe the annual conference of the Collaborative Family Healthcare Association is the best example of a convening that champions both collaboration and family. As a Chair of CFHA’s 2013 conference, I would like to issue you a personal invitation to present your best ideas at this year’s conference. The conference Request for Proposals is open from now until March 15th. The conference will be October 10th-12th at Colorado’s gorgeous Omni Interlocken Resort, midway between Denver and Boulder.

This year’s conference theme, "Disrupting Status Quo”, evokes Wendy’s approach to getting unstuck in the clinical environment. We disrupt paralysis each time we invite someone new to the exam room or to the conference workshop room:

  • If you’ve never attended CFHA before, your ideas and professional contacts will be the disruptive influence.
  • If you’re a regular attendee, consider inviting a new co-presenter to bring forward a revolutionary idea that will ripple through the healthcare system.
  • Or, if you are feeling stuck in the growth of collaboration in your clinical setting, consider inviting a workplace colleague to the room so that he or she can catch the vision and develop into a champion in your setting.

Whether a first time attendee or a regular conference-goer who is inviting someone new, please be assured that your disruptive presence is welcome in our room. Please upload your best idea to the conference website today.

Randall Reitz
Randall Reitz, PhD, LMFT is the Director of Behavioral Sciences at
St. Mary's Family Medicine Residency in Grand Junction, CO. He is also a chair of the 2013 CFHA Conference in Denver. When not scheming to disrupt status quo he can usually be found uploading pictures of his children to facebook.

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Hot Air Balloons, New Friends, and Collaboration

Posted By Matthew P. Martin, Wednesday, January 30, 2013



This post is the fifth and
final in an ongoing series
about patient- and
family-centered care.


My first and only time in a hot air balloon was in Gallup, New Mexico. I lived in the Land of Enchantment for two years after my freshmen year in college. One year in December I decided to attend the Red Rock Balloon Rally that is held every year outside Gallup. A friend of mine discovered that volunteers who helped set up the balloons could be given a ride by the owners of the balloon. We quickly signed up and I soon found myself riding in a woven wicker basket several hundred feet in the air.

My entire perspective changed once I reached such a high altitude. I could see the tops of the beautiful red rock formations and the countless sage brushes surrounding them. At one point we silently floated above a herd of horses that calmly munched on desert grass. They never looked up. Beyond the horses I could see miles and miles of New Mexico scenery including the city with buildings and homes, interstate highway 40 with cars and trucks, and almost the entire canyon with various flora and fauna.

Once we landed, I helped fold the giant envelope ("balloon”) which consisted of large nylon panels sewn together. The basket, which seemed so light in the air, was now heavy and unwieldy. With everyone working together, we managed to place it back in the trailer hitched to a large truck. At this point, I realized that my perspective had returned to normal and yet felt different at the same time. I had experienced an amazing aerial view of the gorgeous desert landscape and now I was back to my normal 5’7” altitude. But in my mind’s eye I could picture how everything seemed to be connected together and how small I was compared to it all. My perception of the world had changed.

When you can see the forest for the trees you get the big picture

I have had similar "high altitude” experiences since then, and, no, they did not involve mind-altering substances (I know that’s what you were thinking! Who needs drugs when you have systems theory?). The first time I learned about systems theory in graduate school is one experience that comes to mind. Also, putting together this blog series has been another one. When you can see the forest for the trees you get the big picture; you notice the interconnectedness of everything around you. That can be an exciting and humbling sensation all at the same time. Learning about how strong and large of a movement patient- and family-centered care has become in recent years has been both enlightening and daunting to me. How exciting it is to discover new allies who advocate for patient and family welfare! How formidable it must feel to implement such impressive change at a large hospital! To end this series, I want to share just a few thoughts I have had since interviewing Rachel, Bonnie, Licia, and Joana.


Patient Advisors play a significant role in the model of patient- and family-centered care (PFCC) that the Institute of Patient- and Family-Centered Care (IPFCC) supports. I cannot think of a more effective way to promote patient and family voices than to include them in patient care, new employee training and orientation, and planning committees, to name a few. What this strategy suggests is that non-hierarchical, collaborative relationships facilitate optimal care and that both patients and health professionals can bring their own expertise to the table. New communication technology will continue to improve this collaboration between patients/families and physicians (Click here for an example).

Patient Advisors seem to create a culture of "we/together” as opposed to "me/them” and this change can happen on all service levels (housekeepers, nurses, physicians, administration, etc.) such that patients and families really feel like stakeholders in a hospital system. The great thing is that it seems the inclusion of Patient Advisors comes at little to no cost and may even lead to cost savings (reducing medical errors, increasing recovery time, improving discharge experience, and perhaps even reducing number of re-admissions). Although there are probably shortcomings to this approach, none really come to mind right now. As Rachel Biblow-Leone from Philadelphia says in the first post, "Family-centered care can seem like common sense, but we know common sense is not always commonly practiced”.


That quote brings me to my second thought. How does one elicit such important change on both an interprofessional level (one on one) as well as on a large, system-wide level? The ladies I interviewed all seemed to agree that it is easy for health professionals to feel defensive when they are asked to collaborate more with patients and families. That is part of human nature especially when a person is satisfied with the status quo (homeostasis anyone?). I even asked myself these questions: How collaborative am I? How often do I empower patients and families in their own health care? How can I encourage my colleagues to practice PFCC?

It seems then to me that implementing change requires a certain degree of humility because you are inviting people to see their work a different way, to be willing to succeed and fail together in figuring out what improved care looks like at your organization. In addition, leadership is integral as well. Licia Berry-Berard at Darmouth told me how she and other like-minded colleagues implemented change on a small scale and then worked hard to help others, including hospital leaders, catch the vision. Bonnie Nicholas at Thunder Bay told me that change began at the top with the CEO and the Chief Nursing Executive calling for a new care model. In both examples, change was ultimately effective because hospital leaders became involved. Change can start from the bottom or the top, but eventually leaders must catch the vision of PFCC for organization-wide change to happen. Otherwise, change stays local and restrained.


I am not a narrative therapist but I do believe in the power of stories, metaphors, and analogies because they are basic tools for learning and expression. Stories have been around nearly as long as human beings have been and they are integral to our collective wisdom, history, and sense of humanity. I was impressed to hear how integral stories became in creating a new culture of care at these hospitals. The stories told by patients and family members resonate with hospital leaders and bring a perspective that statistical data cannot replicate. How do we use stories in our clinical or educational responsibilities? How can we pair stories with strong strategic initiatives and outcomes?


Finally, I wonder how PFCC works in primary care. The goal of this series was to highlight hospitals that provide PFCC but I am left wondering what would this model look like in primary care? Most of my experience has been in primary care and I am passionate about the roles that primary care physicians and behavioral health providers play as frontline health professionals. Although the IPFCC model may look a little different in primary care, I imagine that the principles would remain the same: patients and families should be partners in their own care; families are essential to the health and recovery of patients (Click here for a link). In fact, the Patient-Centered Medical Home model is a model that is designed to facilitate patient-provider collaboration in primary care, implement behavioral healthcare and care management, and involve patients and families in quality improvement. It would be interesting to see how these models compare with each other.

In the end, it is encouraging to find new friends in the movement to put patients and family members front and center in healthcare. It also amazing to reach a new "high altitude”, to see the incredible change that others are making in this field, and to recognize that we are partners together in making change (parallel processes, isomorphism anyone?). I guess you don’t always need a hot air balloon to see the big picture.

Matt Martin is a licensed marriage and family therapist and is currently working as a post-doctoral fellow with the Chicago Center for Family Health and the Illinois Masonic Family Practice Residency Program. He received a master’s degree in Marriage and Family Therapy from Brigham Young University and just recently a doctoral degree in Medical Family Therapy from East Carolina University. His interests include integrated primary care, behavioral health, and family medicine residency education.



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Institute for Patient- And Family-Centered Care

Posted By Matthew P. Martin, Tuesday, January 22, 2013



This post is the fourth
in an ongoing series.
In this post we highlight a professional organization
that specializes in patient-
and family-centered care


Joanna Kaufman is a woman with stories. When she visits hospitals and other healthcare organizations across the country or answers numerous phone calls and emails sent to her employer, she will often illustrate her meaning with narratives and examples. Some stories depict good endings and others not so good endings. But they all communicate one message: patients and families should be at the center of their own medical care. This message has been championed for the last twenty years by Joanna’s employer, the Institute for Patient- And Family-Centered Care (IPFCC), a not-for-profit organization that offers consultation, training, and technical assistance to hospitals, clinical practices, educational institutions, architecture firms, community organizations, and government agencies. Although they work with a plethora of groups, they are absolute experts in patient- and family-centered care (PFCC).

IPFCC was started in 1992 by Bev Johnson, the current president and CEO, who has received national recognition and several awards for her work. Joanna, who is a nurse by training, and Bev actually crossed paths back in the early 1980s when they both received grants from the Surgeon General on projects related to PFCC. Their paths crossed again over the years until 2006 when Joanna decided to leave the nursing field and found a job as the information specialist at IPFCC. She is responsible for the website content, writes a monthly newsletter, trains nurses and physicians in PFCC, and responds to all inquiries sent to the Institute. Altogether, there are 11 women who work at the Institute which Joanna describes as an organization that is "tiny but with great representation”.

When training others in PFCC, Joanna shares many of the experiences and anecdotes she and her colleagues have collected over the years. For example, when designing a new section of the hospital at the Medical College of Georgia, an architect met with several former patients and family members to decide how best to meet the needs of patients at the hospital. They suggested to the architect that he design all the tables, chairs, and desks to accommodate the height of the many patients with spinal cord injuries who would use them. 

In another example, patients and family members were invited to come to a hospital to take photographs of all the signs in the hospital that were hard to read or understand. This group took many pictures, created a photo demonstration of all the pictures, and presented it to the hospital CEO who then asked the group to redesign all the signs and messages they had found confusing. Joanna likes this story because it’s a great example of how hospital leaders can close the gap between medical/hospital culture and patient culture.

Sometimes the biggest challenge for Joanna and her colleagues is to help nurses and physicians catch the vision for PFCC. When meeting with hospitals across the country, Joanna and her colleagues will often request that patients from those very medical centers attend training meetings so that providers can hear the good and the not-so-good stories of their very own patients. Some providers, though, will say to Joanna "But then patients will hear and see our dirty laundry!” Her reply: "They already know your dirty laundry. When a medication is forgotten or when a physician fails to identify himself appropriately, the patient sees this”.

"Patients have a perspective that we can’t have” says Joanna. "I am a nurse and I have a certain mindset that I was trained to have. Even as much as I think I know their perspective I don’t. I have a bias … When you sit down at the table [with a patient or family], the conversation changes because then you get my perspective, their perspective, and our perspective together”.

Joanna shares a story in which a hospital in the Baltimore Washington corridor decided to open ICU visiting hours to loved ones that patients could choose, including gay and lesbian partners. Although the chief nursing officer (CNO) believed this was an important step, many nurses disagreed and resisted the change. So, the CNO created a committee of nurses and volunteers that met together bimonthly for a year. They also held town meetings and invited patients and families invested in the issue to attend. During this time, nurses voiced their concerns about what they imagined would happen if the visitation policy was changed. The CNO often replied "Yes, but how would you feel if this was your loved one?” During that year, not one committee member missed a meeting and eventually the policy change was made and accepted.

For those who want to learn more about the IPFCC, Joanna suggests checking out the Institute’s website which offers an enormous amount of information, hospital profiles, videos, testimonials, and learning materials. The videos alone cover topics ranging from bedside rounds to cultural competency to health information technology. Joanna also encourages those who are curious about PFCC to attend one of the Institute’s conferences. The next conference is slated for April 15-18th in Annapolis, Maryland. "I promise you that you will be amazed” says Joanna.

Matt Martin is a licensed marriage and family therapist and is currently working as a post-doctoral fellow with the Chicago Center for Family Health and the Illinois Masonic Family Practice Residency Program. He received a master’s degree in Marriage and Family Therapy from Brigham Young University and just recently a doctoral degree in Medical Family Therapy from East Carolina University. His interests include integrated primary care, behavioral health, and family medicine residency education.



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Dartmouth-Hitchcock Medical Center

Posted By Matthew P. Martin, Tuesday, January 15, 2013



This post is the third
in an ongoing series
highlighting hospitals
across the United
States that offer
family-centered care.


A young man walks into a hospital room where a patient lies on the bed waiting for breakfast. The bright sunlight streaming through the large window shows that it’s morning time. The young man walks over to the bed and smiling at the patient says "Hi, I’m Brian and I work as part of the housekeeping staff here. I will be taking care of your room during your hospital stay. Is there anything I should know right now about your room?” The patient blinks in surprise and looks up at the young man. The patient thinks for a while and then replies "Well, I guess you could clean up the spill I made last night. I dropped my juice on the floor.”

Brian nods his head in acknowledgement and then goes about locating and cleaning the sticky pool of juice. Once done he continues his cleaning routine by emptying the trash and cleaning the bathroom. Before he leaves, the young man asks the patient "Is there anything else I can help with?” The patient thinks again and then says "My two sisters are coming today. Can you make sure that there is an extra chair in here?” Brian nods his head, smiles, and then leaves.

Although the above scene is fictional, it is very likely a scene that could take place at Dartmouth-Hitchcock Medical Center (DHMC) in New Hampshire. Patient- and family-centered care (PFCC) is not just a passing slogan at DHMC; it’s a culture they are working towards that will inform almost every level of care and service there. Most recently there is an initiative to train housekeepers about patient family centered care principles and empower them as part of the team. They are trained to introduce themselves to patients and ask for feedback on their service. Patients and family members are being given, an opportunity to help providers and hospital leaders understand how they can improve the hospital service and experience.

Licia Berry-Berard, MSW, LICSW, the Manager of PFCC at DHMC, first learned about PFCC when she attended a conference held by presenters from the Institute of Patient- and Family-Centered Care. She and other colleagues at DHMC who were in attendance became very excited about what they heard and returned to work with a commitment and a vision to further this model of care. Although some PFCC was already being practiced in pediatrics and palliative care, Licia and colleagues wanted to make PFCC an organization-wide reality.

They joined forces with other like-minded colleagues, formed the Steering Committee which included patients and families, and began holding meetings and forums to share the principles of PFCC and create a vision for what patient partnership could mean. Patients, who were handpicked because of their hospital experiences and their ability to share and connect with others, attended these meetings, some of which were held early in the morning before the regular work day started.

Over time, the word spread. "It was a lot of work” says Licia. "We knocked on many doors … and took every opportunity to find colleagues who were willing to include patients in their committees and projects”. The work paid off as hospital leaders became aware of how patients and families were involved and how valuable their input could be. "We were given the sanction to move forward with PFCC in a working model which meant educating 10,000 people about the principles of PFCC and what this model of care means and looks like”. 

She states that the biggest challenge in training has been helping staff to understand that PFCC is not just introducing yourself, explaining your role at the hospital and being nice and inclusive at the bedside. It is about empowering patients and family members, including them in decision-making processes, allowing them to push back with questions and respectful disagreement, and inviting them to create new ideas and services at the hospital.

Initially, Licia, her colleagues, and patient family volunteers moved this change forward even on top of their normal responsibilities. Today, she has given up her clinical work and now works full time with a core team, including Linda C. Wilkinson, Coordinator and Jon Huntington, MD Director. They have a team, comprised of staff and patient family advisors who help to hold the institution accountable to the mission of PFCC, supporting movement and decrease in barriers. Licia works alongside several other colleagues and more than 120 Patient Family Advisors who are involved in numerous key strategic committees, interviewing patients about their hospital experience, grant writing projects, simulation training of nurses, and even interviewing job candidates.

Licia shares a story about talking with a colleague who was expressing appreciation for the role that Patient Family Advisors had played in designing a new hospital building. He then wondered out loud how he might involve the Advisors in finding nurses for a new service project. Licia extemporaneously said "Why not give them an active role in the interview process?” Her colleague replied "Can we do that?” She replied, "Why not?” That anecdote is a sample of the boldness and commitment that Licia and her colleagues have demonstrated in bringing about change at DHMC.

Matt Martin is a licensed marriage and family therapist and is currently working as a post-doctoral fellow with the Chicago Center for Family Health and the Illinois Masonic Family Practice Residency Program. He received a master’s degree in Marriage and Family Therapy from Brigham Young University and just recently a doctoral degree in Medical Family Therapy from East Carolina University. His interests include integrated primary care, behavioral health, and family medicine residency education.



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Thunder Bay Regional Health Centre

Posted By Matthew P. Martin, Wednesday, January 9, 2013



This post is the second
in an ongoing series
highlighting hospitals
across the United
States that offer
family-centered care.


Imagine being asked to find and integrate a new care model for a 375-bed state-of-the-art acute care facility in northwestern Ontario, Canada. Now, imagine that your catchment area of 250,000 patients is equivalent in size to the country of France. Such an endeavor would be overwhelming for most. However, like most major initiatives, change begins with capable leadership and forward vision. Both of these elements are integral to the story of how Thunder Bay Regional Health Sciences Centre (TBRHSC) became a model of multi-disciplinary teamwork, integrated teaching and research, and patient- and family-centered care (PFCC).

In 2006, the chief executive officer of TBRHSC tasked the vice present and chief nursing executive, Dr. Rhonda Ellacott, to find and integrate a new care model for patients and families at TBRHSC. After months of researching different models of care, Dr. Ellacott and other hospital leaders decided to base their care model on the Medical College of Georgia’s PFCC model of care. This is where Bonnie Nicholas, PFCC lead and patient advocate at TBRHSC, comes into the story. "This was a change of culture and philosophy” says Bonnie, who had worked at TBRHSC before and was brought back to help implement the care model. "We brought together all the stakeholders in the hospital system to create a new model of care”.

Bonnie had previously been involved in helping patients and families waiting for organ transplants before returning to TBRHSC. "I was exposed to the power of the story and saw how the stories of patients and families moved even the most hardened staff members to change”. One of Bonnie’s first ideas was to hold a "Visioning Retreat” in which all staff members participated in providing input. From this input, corporate strategies were created. For example, as part of the new care model, staff members were required to state their NOD (name, occupation, do) every time they met a patient and family member for the first time. "We found that most problems were happening around communication” states Bonnie. Staff members began listening more and paying attention to the needs of patients and families.

Another corporate strategy was to engage patients and families in the development of new initiatives the hospital. Some of the fruit of this joint effort includes televisitation (audio and video communication between patients and loved ones when barriers created by circumstance, geography, and weather are present), pediatric family tours of operation rooms, transportation of children through the hospital on Radio Flyer wagons, and a new visitation policy. "We changed our visiting hours. Now there are no restrictions on care partners visiting, whoever that may be”.

Patient advisors play a major role at the hospital. These are volunteer patient and family advisors who serve on committees and councils in the hospital. New policies and projects must be approved by these advisors. Says Bonnie, "They can be any age; we have patient and family advisors who are as young as eight years old and as old as 83. They’re involved in everything we do.” When asked how many committees and councils patient advisors have served on, Bonnie stated "Patient advisors are in our DNA. I stopped counting after 400”.

Thunder Bay

Advisors also play a role in helping new professionals orient to the culture and expectations at TBRHSC. There are even learning modules and tests available for staff members who wish to certify in patient- and family-centered care at the hospital. In fact, all new hospital staff members are required to agree and commit to the care model before they begin working at the hospital.

Input and stories from patients and families play a big role at TBRHSC. And the outcome data shows that hospital leaders are on the right track. Within 18 months of implementing the PFCC model, patient satisfaction increased on average by 12% along several dimensions (care-access, information sharing, education, physical comfort, emotional support, continuity, and transition). Provider satisfaction was also shown to increase as well. Says Bonnie: "It’s critical to making improvements in patient satisfaction. Who knows best about their own health and satisfaction than the patients and families themselves?”


Matt Martin is a licensed marriage and family therapist and is currently working as a post-doctoral fellow with the Chicago Center for Family Health and the Illinois Masonic Family Practice Residency Program. He received a master’s degree in Marriage and Family Therapy from Brigham Young University and just recently a doctoral degree in Medical Family Therapy from East Carolina University. His interests include integrated primary care, behavioral health, and family medicine residency education.



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