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Better Care, Lower Cost Act S. 1932: A vehicle to promote couple and family-centered, integrated care for chronically ill seniors

Posted By Theodora Ooms, Jana Staton, Tuesday, April 29, 2014
It is seldom that family-centered health care professionals get an opportunity to directly influence national health care policy. Alerted by Theodora Ooms and Jana Staton, several members of CFHA recently saw an opening when Senators Ron Wyden (D-OR) and Johnny Isakson (R-GA) introduced the Better Care, Lower Cost Act on Jan 15, 2014. (A companion bill, HR 3890 was introduced in the House.) This bi-partisan, bi-cameral legislation is aimed at providing better, more coordinated and integrated care at lower cost to the millions of Medicare beneficiaries with multiple chronic conditions. (In 2010, 68% of Medicare enrollees suffered from two or more chronic conditions and accounted for 93% of Medicare spending annually.) The Act amends the Medicare Program to set up a new model of financing and delivering services dubbed the Better Care Program, to create more effective networks of integrated, multidisciplinary health teams. These teams are aimed at keeping chronically ill patients as healthy as possible in their own homes and communities. However, the Act as introduced does not mention spouse or family caregivers, or consider them as an integral part of the health care team, serving as the “backbone or glue” of the long term/chronic illness care system.   
Seeing this opportunity to educate national health policy leaders about this critical component of health care, Frank de Gruy, Susan McDaniels, Barry Jacobs, John Rolland and Bill Doherty enthusiastically joined Ooms, Staton and Mary Myrick, of the National Healthy Marriage Resource Center (NHMRC) to sign a three-page letter of comments to the Senators, pointing out the bill’s failure to acknowledge the critical role of spousal and family caregivers in the prevention, care and treatment of the chronically ill. The letter included a separate list of recommended changes in the legislative text to promote collaboration with spousal and family caregivers, identify caregivers in medical records, and conduct caregiver assessments along with the patient's in the Welcome to Medicare and annual Wellness visit. These suggestions also include setting up a national working group to develop curricula for training health care professionals in how to collaborate with family members.

For many Medicare patients the spouse is the most likely day-to-day caregiver As their letter points out, family caregivers are spouses, partners, adult children, siblings, friends and neighbors who provide many kinds of support, assistance and, increasingly, help with medical procedures so as to enable millions of persons to remain living in their homes and communities. The term "family caregiver" however obscures the unique legal, emotional and social characteristics of caregiving between spouses. Spousal presence and influence on chronic illness prevention, care and treatment is much more common than generally acknowledged. In fact as the 2010 Census shows, the majority of those 65 to 75 years are still living with a married partner in the home. And if cohabiting partners (heterosexual and same sex) were included the numbers would be larger. (Even among those older than 75, 38% of women and 73% of men still live with a spouse, as Ooms and Staton point out in a 2012 CFHA blog post). For many Medicare patients, therefore, the spouse is the most likely day-to-day caregiver; some competent and willing, others unable or uncooperative, but in either case, a direct influence on patient health. 

As Frank deGruy pointed out at the 2008 Wingspread Conference on Making Connections Between Relationship Quality, Marriage and Health, sponsored by the NHMRC, "Illness is individual; health is always social." If we're going to improve health outcomes and lower costs for the Medicare population by preventing or reducing serious chronic illness, better care needs to include collaboration with the patient's most intimate partner or close family member, both for the sake of the patient and for the sake of the well-documented health consequences for family caregivers.

Senator Wyden is the new Chairman of the powerful Senate Finance Committee and he is known for his passionate interest in improving care for the chronically ill and his ability to work across partisan lines. No one expects this bill to be enacted soon and it will go through a lot of changes, but it could be an initial step to significant Medicare reform. In our communications with several leading health policy experts, they agreed that the absence of any mention of family caregivers in the Act is a major drawback, and something that will certainly get attention eventually. And if Medicare opens the door to substantial collaboration with spouses and family as part of health care for chronic illness in seniors, the potential for even greater progress in illness prevention and care with younger patients is enormous. Fortunately, CFHA's 2014 Conference in Washington DC "From Fragmentation to Integration" is coming at a perfect time for members to make their voices heard about the crucial role that intimate partners and families can play in a truly integrated health care system. Theodora Ooms
Jana Staton
 
The letter to the Hill was initially drafted by Ooms and Staton, co-coordinators of the Wingspread Conference on Marriage, Couple Relationships and Health sponsored by the NHMRC. (De Gruy, McDaniels and Doherty were key presenters at this conference). It is available on line here.

Theodora Ooms, a social worker and family therapist, has worked for thirty years in Washington DC to integrate a family systems perspective into federal and state policy and programs. She was a participant in the founding CFHA Wingspread conference in 1993 and is very happy to be reconnected.

Jana Staton, has her doctorate in counseling psychology, and currently works as a marriage and family therapist and couples educator in Montana. She is the co-author of A Few Months to Live: Different Paths to Life’s End.

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Born to Connect: The Neurobiology of Attachment and Early Trauma

Posted By Wendy Wray, Tuesday, April 15, 2014
Neuroscience provides us with hope and evidence to support parents who seek change in their parent/child relationship. Attachment theory is no stranger to many of us. According to this theory, each of us has a natural desire to bond with another human being like a parent or partner. In fact, some scientists think that this desire is wired into our neurobiology. Yes, that’s right! The need to feel connected is part of our genetic makeup. But how do other factors like child development, early trauma, relationship formation, stress and well-being play into all of this? I’m glad you asked. I will try to connect some of the pieces to the puzzle for you in this blog post.

 Within the past ten years neuroscience has exploded in brain imaging processes known as functional magnetic resonance imaging (fMRI). Experts can now determine what parts of the brain are stimulated when we feel angry, fearful, loving, or sympathetic. Neuroscience helps us to better understand the effects of early trauma and stress on child development. Research has shown that as human beings we need both nature and nurture to function successfully and develop secure attachments.  The need to feel connected is part of our genetic makeup
The attachment style (e.g., secure, anxious, avoidant, disorganized) that a child develops begins with the caregiving experience received in the first years of life. Secure attachments help children to form healthy adult relationships later in life. For over two decades, researchers have explored how childhood attachment impacts relationships and the neurobiology of the brain over time. One of the largest longitudinal studies on trauma known as Adverse Childhood Experiences (ACE) was completed by Center for Disease Control (CDC) and Kaiser. This study had over 17,000 participants that suffered from trauma and neglect. Research findings from the ACE study concluded that childhood abuse has an impact on physical health by increasing the odds of being diagnosed with a chronic illness as well as mental and/or psychiatric illnesses. Early trauma, especially related to caretakers, leads to a complexity of post-traumatic reactions.

According to Bruce Perry, an expert on childhood trauma and maltreatment on the developing brain, the impact of childhood trauma is so great because it occurs at critical periods when the brain is most rapidly developing and organizing. During the first 3 years of life brain development is at a rapid pace, creating neural pathways that allow more complex parts of the brain to exist. Studies have discovered that before the age of five up to 90% of the adult brain has been formed. Despite the vulnerability of the brain to early trauma, remarkable recovery is often possible with interventions.

Early trauma leads to a complexity of post-traumatic reactionsRecent studies have shown that children who grow up with nurturing parents with regular physical touch experience normal brain development in the hippocampus and amygdala (i.e., part of the brain responsible for spatial learning, stress reactivity, memory consolidation and the processing of emotions). In contrast those children that grow up in poverty are at higher risk for having parents that use harsher parenting styles (i.e., lacking nurturance, physical touch). These children tend to have a smaller cortex (i.e., outer layer of the brain) with less activity in the temporal lobe resulting in poor social and emotional intelligence. Research has shown that parenting young children in a loving, caring way safeguards children from stress that leads to a decline in brain development. 

Secure attachment increases the odds of children achieving positive outcomes in adversity, which in turn fosters resiliency by improving one’s cognitive emotional and social well-being. Subsequently, even if a child has a turbulent early start, his/her brain is so resilient, that if provided with love and nurturing (i.e., secure attachments) later in life it will change the composition of the brain and the brain can repair itself. Neuroplasticity (changes in neural pathways) and even neurogenesis (creating new neurons from cells) continues throughout life. Neurogenesis in the mature brain may be an important biological mechanism responsible for the brain’s natural ability to change following an injury. Secure and mutually supportive attachments are formed in parent and child relationships and also in partners in romantic relationships providing safety and minimizing the heightened arousal of cortisol (stress hormone) levels.

As Health professionals it is important to understand that:
  1. Positive experiences can help to change the structure of the child’s brain following a traumatic injury (maltreatment, physical and emotional abuse).
  2. Neuroscience provides us with hope and evidence to support parents who seek change in their parent/child relationship.
  3. Change can be facilitated in relationships through family therapy when therapists understand how the brain works and can promote new neural circuits.
For example, Susan Johnson initially suggests individual therapy to allow the trauma survivor space to address the trauma and its effects. She will then engage her patient in couple therapy to de-escalate relationship distress and create a secure base for both partners using the relationship as a part of the healing process. Another example is Mona Fishbane uses couple therapy to provide concrete skills such as mindfulness, meditation, and emotion regulation techniques (rethinking angry emotion and seeing situation from a different perspective).

Health professionals can use this knowledge to help patients understand:
  1. That they can begin to transform their own lives and relationships through psychotherapy.
  2. When parents use a nurturing approach instead of a harsher approach with young children, they protect children from stress that leads to poor brain development.
  3. Loving children/spouses is the key to changing insecure attachments into secure attachments and building secure, healthy relationships.
If your child did not experience secure attachments in the earlier years of life there is still hope. The brain forms new neurons and neural pathways throughout life. Building healthy parent child relationships later in life or participating in parent/child or couple therapy using proper techniques can help the brain to change and break negative patterns from the past. Remember we are born “(wired) to connect”, so love and nurture your child!

 Wendy is a Marital and Family Therapy PhD student at Loma Linda University. Wendy has practiced as a marriage and family therapist intern for over 3 years specializing in medical family therapy for over one year. Wendy provides holistic care to her patients by utilizing a bio-psychosocial spiritual approach. Her research interest is focused on program evaluation and studying the neurobiology of attachment and early trauma in parents with young children and in couples. Wendy’s goal is to help high-risk families to better cope with unresolved trauma that leads to insecure attachments, harsh parenting, chronic illness and neurobiological problems later in life originating from chronic stress, poverty and other risk factors. Wendy’s desire is to help families to become more resilient and create secure attachments with their partners and children and also to help children to have a positive early start.


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Reading Through Limbo

Posted By Barry Jacobs, Carol Levine, Tuesday, April 1, 2014
Recently, Barry Jacobs interviewed Carol about her new anthology Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2014). Ms. Levine is one of the country's top experts on family caregiving. She cared for her own husband for many years who was cognitively impaired and quadriplegic. 

Barry Jacobs: Your new book, Living in the Land of Limbo, a collection of fiction and poetry about family caregiving, provides new perspectives on the experiences of families living with illness. How did reading these and other creative writings help you during the years you were a family caregiver for your husband? How do these writings inform your work as a family caregiver advocate?

Carol Levine: I’ve always turned to literature as a way to understand the world and find whatever was missing in my own life. As a child I wanted to move beyond the narrow confines of my small rural community. So it was natural for me at a time of great stress in my life, caring for my late husband, that I would find solace (and escape) in stories and poems. I didn’t start out looking for pieces about caregivers; they just seemed to turn up. What some people find in support groups I found in books. As a family caregiver researcher and advocate, these stories have given me a deeper appreciation of both the universal themes in caregiving and the specifics of each individual’s situations. I try to be careful of making generalizations about “what caregivers want and need,” because each person comes to caregiving with a different life experience.

 These stories have given me a deeper appreciation of both the universal themes in caregiving and the specifics of each individual’s situations
BJ: Can you describe a few of your favorite pieces in this book, or perhaps telling moments in those pieces that particularly struck you?

CL: Among the first pieces I read were two poems that appeared in 1998 in the same issue of The New Yorker: “The Ship Pounding” by Donald Hall and “The Sick Wife” by his wife Jane Kenyon, who was dying of leukemia. Hall likened the hospital to a ship “that heaves water month/after month; without leaving port, without moving a knot,/without arrival or destination,/its great engines pounding.” That metaphor captured my own sense of being trapped in a huge machine that operated mechanically, without much consideration of the passengers (the patients) and visitors (family members), who wanted only to disembark and return to normal life. Kenyon’s poem, on the other hand, brought back my own experience of being treated for a serious illness and feeling so overwhelmed by fatigue that ordinary activities seemed impossible.

Unrelated to my personal experiences, one of the last pieces to make it into the book is Julie Otsuka’s story, “Diem Perdidi” (I have lost the day). This is a moving and brilliantly written account of the persistence and unpredictability of memory in an aging Japanese-American woman, who was interned as a child in World War II. She remembers the daughter who died shortly after birth but not the one who survived and is her caregiver.

BJ: What kinds of lessons can family-oriented healthcare providers glean from fiction and poetry?

CL: I’m wary of suggesting that anyone read these selections to find “lessons” for their own caregiving or for clinical practice. Although many are based on real people and real events, they have been transformed by the authors in the mysterious process called creativity. What providers can glean is a deeper appreciation of the complexities that people bring to a clinical encounter beyond the specific problem that needs attention. Each family’s experience should be approached as a story that is still unfolding. Providers should be open to the “back story” as well as the current chapter. However the story ends, it is the family that has to live with it and tell it over and over.

BJ: What do fiction and poetry add to the growing number of caregiver memoirs?

“Fathers and Sons,” he writes: “Some things, they say,/One should not write about. I tried/to help my father comprehend the toilet….” CL: No single medium captures the whole of the family illness experience. Memoirs tell the story from start to finish, and in retrospect, while stories and poems capture a moment that encapsulates the whole. Memoirs are (or purport to be) based on fact. Fiction and poetry tell an emotional truth, which is sometimes downplayed in memoirs out of consideration for the real people whose lives are being recounted. For example, in Rick Moody’s story “Whosoever: The Language of Mothers and Sons,” that narrator is a son bathing his aging mother. In an almost Biblical incantation, Moody writes: “Whosoever knows the folds and complexities of his own mother’s body, he shall never die” (italics in original). David Mason addresses the distinction between memoirs and poetry directly. In his poem, “Fathers and Sons,” he writes: “Some things, they say,/One should not write about. I tried/to help my father comprehend the toilet….” In fiction, a character can reveal innermost feelings, even hostile ones, and behaviors like marital infidelity, in ways that are often glossed over in memoirs.  

BJ: Do any of the stories or poems in your collection focus on the family's experience of collaborating with healthcare professionals?

CL: A few. When I first started thinking of my pile of stories and poems as a book, I thought I would find more that dealt specifically with relationships with healthcare professionals. But I soon realized that professionals come and go in caregiving situations while the family’s life goes on and on. Still, there are some examples. Lorrie Moore’s story, “People like That Are the Only People Here,” takes place in a hospital where a baby has to have a kidney removed, and the mother encounters the blunt language of doctors. In Allegra Goodman’s story, “The Closet,” a social worker comes to the old Hawaiian house where Lily is living with her sister Evelyn and her family. Lily, a former child prodigy, now lives in a closet, comes out only at night, and depends on Evelyn to bring her food. The social worker acknowledges that Lily is mentally ill but is not at risk for harming herself or others so living in the closet is a “ lifestyle choice.” The impact on the family–Evelyn loses her job, her husband is furious because the house is overridden by termites that cannot be cleared unless the house is empty—none of this enters the social worker’s calculus. On the more positive side, in Dick Allen’s poem, “Parents’ Support Group,” a therapist slowly opens the session of a group of parents whose children are suffering from drug abuse, anorexia, self-mutilation, and other manifestations of self-hate. Only one story has a therapist as a main character: Amy Hanridge’s “Starter.” Judy Jones is the “shrink” who tries to help Kayla, an Apache woman who served in the Marines in Iraq, to adjust to civilian life and to reconnect with her mother and sister.

BJ: Is there a role for the creative arts in the training of physical and mental health professionals?

CL: Reading fiction and poetry, like analyzing paintings and listening to music, is an enriching and humanizing experience that better equips professionals to listen carefully, ask good questions, and pay attention to words and body language. These are skills that are all too often inadequately addressed in professional training and are at the heart of meaningful communication.


Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (2006, Guilford) and the forthcoming Caregiving Family Stories & Beliefs, a collection of 25 of his previously published essays and case stories on families and illness.

 

 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. Her previous CFHA blog posts are available here and here


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Supporting a Safe Balance

Posted By Lindsey Lawson, Tuesday, March 18, 2014

In December, I defended my dissertation research - a qualitative study in which I interviewed medical, nursing, and medical family therapy (MedFT) students on how their personal experiences with illness impact their work, and particularly their ways of relating to patients’ families – to a roomful of people. In the weeks leading up to this defense, I wracked my brain trying to think of anything and everything my committee might ask me in the question-and-answer portion after my presentation, and I believed I’d thought of everything - I was wrong. The question that gave me pause was one that should have stood out to me as being important some time ago – my committee wondered, “Do you think you’re asking too much of your non-MedFT colleagues? Are you asking them to be therapists in addition to their other jobs?” 

I could see where they were coming from. Maybe I was asking them to be too soft and sensitive; to relate to patients in exactly the way that I would. I wondered if, in wanting to emphasize the unique contributions that I believed MedFTs could offer, I was inadvertently adding to an “us versus them” mentality. In the struggle to feel like my work was legitimate in the medical world, how easy it was for me to find the places where others weren’t being the type of providers I thought they should be. Systemic thinkers versus medical model followers? Sensitive caregivers versus prescription writers? With this in mind, I set out to add one final chapter to my dissertation through which I wanted to better understand the challenges that providers face in balancing the needs of patients and self. Here’s what I found: 
 

Maintaining a "Safe Balance"

There are a number of reasons that most healthcare providers maintain a “safe balance” approach to connecting emotionally with patients and families. 
Burks and Kobus (2012) state: 

The tendency to view and discuss patients in objective, technical, detached and non-humanistic ways often occurs in the culture of medicine.  This does not imply unkindness, but, rather, has developed for beneficent purposes, such as the provision of scientific expertise and efficient communication.

So in order to meet the demands of the system and preserve sound judgment, many providers have to find ways to protect themselves. Some of the most common work demands that healthcare providers face include long working hours, feeling a lack of autonomy in decision-making within the larger medical system, and imbalances between time and effort spent at work and home, which may additionally result in poorer social support systems (Burks & Kobus, 2012). They are asked to repeatedly attend to the needs of those seeking care, which often involves the heavy emotional work of delivering bad news, dealing with frustrated or angry patients, and witnessing prolonged suffering.

At the same time, they try to attend to their own needs: compartmentalizing or practicing other acts of self-care that keep patients’ experiences from overwhelming them. If this balance shifts too much in one direction or another, healthcare providers can face a number of serious problems, including emotional fatigue and burnout. Considering this, expecting providers to demonstrate high levels of empathy for patients and families may be too overwhelming. 

Clinical Implications

So what are the implications for me as a behavioral health professional? Instead of shifting towards what others need to be doing differently, I’m working on understanding the additional stressors that so many healthcare providers are under and supporting my colleagues as people: acknowledging the pull of different obligations that are being managed, offering a compassionate ear when I know someone’s having a bad day, and emphasizing the positive impact that providers have on their patients’ lives.

What does that support look like in my day-to-day work? Some time ago, I ran into one of our residents in the break room. I asked her how her day was going, and she sighed and said that it was “as usual:” busy and frustrating. One patient in particular was causing her stress, but she said that it was easier just to compartmentalize and “let it go.” We chatted briefly about how it’s both fulfilling and challenging at different times to have patients who affect us personally in some way, and how taking time off to decompress, talk to someone else who understands, or spend some time alone can be helpful. Having a better understanding of the conflict between self and other that she was experiencing gave me more compassion, and helped me to support her in finding her own “safe balance.”

Reference

Burks, D. & Kobus, A. (2012). The legacy of altruism in health care: The promotion of empathy, prosociality, and humanism. Medical Education, 46, 317-235. 

 
Lindsey will graduate in June 2014 from Loma Linda University with a PhD in Marital & Family Therapy, and is currently an Assistant Professor in the Marriage and Family Therapy department at Pacific Lutheran University. Before beginning teaching, Lindsey worked as a nurse and additionally spent 2 ½ years as a medical family therapist at the Loma Linda Medical Center. 
 


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Five Questions With Evan Imber-Black, PhD

Posted By Matthew P. Martin, Tuesday, March 4, 2014

In the fall of 2012 I had the great opportunity of attending a workshop given by Dr. Evan Imber-Black entitled "Will talking make it worse?" During her presentation, Dr. Imber-Black persuasively made the point that many couples are paralyzed with the uncertainty and fear that naturally comes with serious illness. Recently I was fortunate enough to convince Dr. Imber-Black to share some of her thoughts with the CFHA community. Here are five questions and answers as a result of my conversation with her.

1) What have you learned from working with couples facing illness and/or disability?

 

When people come in with a medical illness, they are never just dealing with a medical illness. Never. There are finances, decision making, spiritual needs, planning for the future, all the histories, all the anger, and many other problems they’ve faced through the years. When people are coming to see us they walk in with much more than just an illness. You are addressing things at multiple levels including the illness. So just start with where they are. Then you are faced at every moment with therapeutic choice points. Where do I go? Do I go here or there? Then watch very closely for their responses. I tell my students that the only mistake is to do the same thing over and over again when a couple is telling you “Don’t do that. We don’t want to go there”.

 

2) Are there ever times that denial, despair, secrecy, and other so-called "negative" reactions to illness may be functional or beneficial for couples? If so, when?

 

I would say it’s all about timing. In terms of secrets, unless the secret is dangerous like someone planning to kill themselves, you have time on your side. You don’t have to open up the secret this instant. You have time to talk it over, about the risks and benefits of opening up the secrets, about who and when. In my experience, people have thought about all of the risks, but have seldom thought about the benefits of greater openness. Asking a couple to imagine the impact of speaking - the advantages and disadvantages – on every person and every relationship is usually a whole new experience. Most often people will shift toward openness. 

In regard to despair, it seems like a lot of people when they are facing the end of life or when they are going through God-awful treatments are going to feel despair. Are there going to be moments of despair? I think so. It’s reasonable to expect that someone experiencing pain, suffering, terrible treatments, a rocky medical system, costly payments, of course they are going to feel despair. That’s OK. You just don’t want people to get mired there. But there also has to be a point where people can talk about that and experience it and hopefully help not just their therapist but their partner to witness and walk along side. And the partner might feel despair too because it’s pretty awful seeing someone you care about suffer. So I am very much not a believer in the idea, “Oh let’s be positive all the time”. I want to create an environment of authenticity. If I can do that then I trust some good things are going to happen. 

Illness can be unpredictable. Therapy can become a place where you make choices about what to talk about, what to express, how to show yourself to your partner or therapist. One wife at the end of our work said to her husband “Here in this room you are more open in this place than any other place in your life”. He replied “Well, we need to find more rooms like this”. He died a month later. Did that give them a sense of control over the illness? I don’t know. But that leads back to the medical system and what patients are told. Toward the end of his life, this husband was repeatedly approached by the surgeon who would say “Here is one more thing we can try”. But they were all hopeless attempts and would keep the couple out of sync because he would say “Oh yes, brain surgery. Let’s do it!” She would think “Oh my God. I cannot stand this and go through one more thing”. And then a day later they would switch. He would say “I don’t want to do this. They are saying I need to gain weight and I can’t” and she would say “Eat, eat! You need to gain weight!” That is very typical toward the end of life and most often no one tells couples that they can get out of sync with each other and then shut down, afraid to tell the other person what they are thinking. Couples should know that that is a natural and expected experience. Most often no one tells couples that they can get out of sync with each other 

3) There is so much emotional "work" that goes into helping couples facing illness and/or disability. How can providers balance the need to explore and process emotions with the need to change patterns of behavior?

 

I don’t think it’s an either/or proposition. I think it is both/and. They inform one another. When you are working with a couple and they are doing the emotional work, it changes their interactional pattern, their proximity and distance from one another. The mere fact of being in a room with one another and talking about vulnerability, potential loss, and physical pain with a couple that never has had vulnerable conversations. What I have noticed is that when couples come to therapy, not only do they talk about coping with the illness but they talk about parts of the relationship that have gone missing. One couple told me “cancer saved our marriage”. It sounds bizarre and I’m not recommending that couples seek out cancer to save their marriage.

 
 One couple came in, 18 year marriage, very rocky marriage. He had stage four colon cancer that had already spread to his brain and liver. They did not talk about the cancer. They said “We are here to work on our marriage”. It would have been a mistake if I had not honored their request because I know that we will eventually get to the other issues. Over the course of therapy, the cancer proved to be a crucible for their relationship and enabled them to really talk in therapy with each other about all kinds of things including cancer. Their marriage had been in shambles for a long time. You have to deal with that first before dealing with what the illness is doing to them. They both came from families where they each had fathers who both died from cancer around the same time as the husband. The lesson growing up they learned was “The less we talk about the cancer the better”. They were both Irish Americans, so there was a cultural piece. There were many things pulling at them and they didn’t have yet a strong enough “basket” to hold the enormity of what was happening to them together. So instead they would go off and talk to friends. One friend told the wife to go get a book about hospice. She ordered it secretly and he found her reading it and crying. They brought this story to therapy and that was my entry point.

 

You have to watch and wait and stay a tiny step ahead in therapy. Go too fast, too far, look back and they are gone. I trusted the process to know that we would get there eventually. Any good therapy, whether or not we are talking about medical illness, requires that circular process between you and the couple. With this case, I had a team behind the mirror and after sessions they would reflect with me, give me a hug which was great because we knew he was dying. Little by little, each week, it was like peeling an onion, talking about what was really in their midst, how we spend our time knowing that we don’t have the luxury of time. The therapy room became a place where they could really reveal to one another what each was thinking silently. Our strategy was simple - “talk about it, talk about it, talk about it”. She had held a secret that she thought it was her fault that the cancer was in the final phase because she had referred him to the doctor that missed the diagnosis. He never knew that she thought that until our work together. Over time as people develop trust they can begin to tell each other these things. 

4) You've written extensively about family rituals. What role do rituals play for couples struggling with illness and/or disability?

Well, going back to the couple where the husband had stage four colon cancer, the wife made an amazing surprise party for him and gathered all his friends. She told him “put on your tuxedo, we’re going out” and then they walked into a room with 200 people. He said to me in therapy “You know, I think that gave me a few more months of life”. In terms of what a ritual can do, I’m not sure if it did or didn’t but there is a sense that maybe it did. 

 The interplay I see over and over again is that when people engage in meaningful rituals they are able to talk about the hard stuff. That feeling of being connected to others who care about you and you care about them enables good conversation and more open conversation. With this particular couple, their son knew that dad had cancer but in the midst of the therapy work he developed a crisis. It turned out he had some serious surgical adhesions in his colon and they had to do a colostomy. Later they overheard their son say to a friend “My dad doesn’t have cancer anymore”. This dad came home feeling better, and so they didn’t correct their son’s idea that dad was all better nor had they told the son about the colostomy. Meanwhile, there are people in and out of the apartment like the visiting nurse and others. They went to a beautiful Thanksgiving with all of their extended family which they thought about skipping. They told me “We know that this is going to be his last Thanksgiving” and on the way home they decided to talk with their son about Dad’s medical condition. His response? – “well I knew that – I was just waiting for you to tell me”! It’s very hard to keep secrets from kids – they are heat-seeking missiles when there is missing information.

That feeling of being connected ... enables good, open connection 

In another example where the wife had cancer, the parents instituted a ritual of Friday movie night with popcorn. They have fun and laugh and that has been a terrific container for when they also need to have serious talks with their little girl. “Yes we are going to have a movie but we are also going to talk about mom’s double mastectomy”. Those kinds of things that provide the ability to create a sense of connection that repeats and you can count on it. I think this reliability is extremely important especially for families facing a lot of uncertainty.

                                     

5) What role can physicians play in working with such couples?

 

They can say “let me refer my patient and their family for family therapy”. Some physicians don’t think that part of their responsibility here is for everyone’s wellbeing and to send them to a competent family therapist. Another important role for physicians is to encourage patients to bring in a spouse, a family member, or someone that they trust. A lot of physicians don’t like it when another family member comes. They haven’t been trained how to talk to people in those circumstances. The outer culture around medical problems encourages more of this individual, doctor-patient sanctity in the room. Doctors can say “you know, I think it might be helpful for you to talk with someone on a more regular basis” and then give them a good referral. 

 

Evan Imber-Black, Ph.D., is the Director of the Center for Families and Health and a Senior Faculty Member at the Ackerman Institute for the Family in New York City. The Center for Families and Health delivers training, consultation and systemic therapy for families who have one or more members with a chronic or life-threatening illness. In 2007, Dr. Imber-Black became a visiting professor at Mercy College, Marriage and Family Therapy Program, and in 2008, she became the Director of the MFT Program. Dr. Imber-Black maintains a private practice in Couple and Family Therapy in New York City and Westchester County. Dr. Imber-Black is a past president of the American Family Therapy Academyrecipient of the 1990 American Family Therapy Academy Award for Distinguished Contribution to Family Therapy Theory and Practice; and the 1999 recipient of the American Association for Marriage and Family Therapy Cumulative Contribution to Marriage and Family Therapy. Throughout her internationally recognized career, Evan Imber-Black has made major contributions in thematic areas that cut across different models of practice, including Families and Larger Systems, Family Rituals and Family Secrets. She is the author of over 50 original papers, and several books, including The Secret Life of Families (1998), Secrets in Families and Family Therapy (1993), Rituals for Our Times (1998; co-authored with Janine Roberts); Rituals in Families and Family Therapy (1988; Second edition, 2003; co-edited with Janine Roberts and Richard Whiting) and Families and Larger Systems (1988). Married to Lascelles Black, MSW,  LMFT, Evan is most proud to be the grandmother of Josie, 15; Lois, 12; and Zane, 10, who have helped her to know that generativity is the core value she wishes to bring forth in her work and in her relationships.


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Words That Matter

Posted By Suzanne Mintz, Tuesday, February 18, 2014
Some of us are numbers people; some of us are word people. I’m definitely one of the latter. Ever since I became an advocate for family caregivers over 20 years ago I’ve been questioning the accepted terminology. It began with the terms formal and informal caregivers, formal referring to home care aides who provide services for a fee; informal referring to me and the millions of other family members/friends who provide care for a loved one and do not get paid.


My skin would bristle every time I heard the phrase and every chance I got I would stand up at meetings and say: "I may not be trained and I’m certainly not paid, but there is nothing informal about the care that I provide. I take it very seriously and give it my all”. I am pleased to say that over the years others have picked up on my words and today the terms family caregiver or family/friend caregiver is in common practice.

There are other common terms or names in health and social policy that make my skin crawl. I will rail against them from time to time, but I haven’t made changing them a crusade, perhaps because they are part of the healthcare lexicon and I know it would be futile. Nevertheless when given the opportunity to be in front of a relevant and thoughtful audience I can’t resist the temptation to try and make some converts to my "what we call things matters” campaign.

Ken Thorpe the highly respected health policy professor and thought leader relates an anecdote about his mom. When telling her about the work he was doing on medical homes, she interrupted him and said: "I’m not going to go into one of those”.  It’s not surprising that someone, especially a senior would react that way. It’s a reasonable assumption that medical home is synonymous with nursing home. 

Those who define a population or create terminology don’t often think about how it will be digested outside their own community, but they should. Words make a difference. Remember ‘death panels’. 

I’ve been thinking lately about the terms ‘patient engagement’ and the ‘engaged patient’. An engagement, according to Merriam-Webster is an appointment, an enlistment, and of course a statement of intent to marry. To be engaged is to be absorbed, enthralled, or immersed. These words aren’t negative in the way informal caregiver is or as misleading as the term medical home can be, but they still rankle. They are more about something that will happen in the future, something that I will be involved in. It’s the ‘in’ that gets to me. I’m absorbed in reading a book; I have an appointment in half an hour, my hands are immersed in water.  I’m engaged in my health care. They seem somewhat passive to me. Words make a difference. Remember 'death panels'?

I act. I am active. These are direct. They are strong. The term patient activation has gained prominence recently, but it is completely off the mark. Human beings can’t be activated, only robots, garage doors, and military units.  Check the dictionary. I did.

Rene Descartes said, "I think therefore I am”. In healthcare I act. I provide information. I ask questions. I (we) should be the center point of all that follows. Patients and family caregivers have always been the objects of healthcare, those whose wishes are often ignored, and those to whom things are done. Now is our time to speak up, to act, to be part of the team. It is time for patients, families and providers to move beyond engagement. It is time for all of us to get married.


Social entrepreneur, family caregiver thought leader, author, speaker, advocate - 20 years ago she put a face on the issues of family caregiving when they were not recognized outside the aging community. She co-founded the National Family Caregivers Association (now Caregiver Action Network) and led the charge for recognition of family caregivers across the lifespan and as critical players in the delivery of chronic illness care. She retired from the organization in June 2013 and now run her own consultancy: Family Caregiver Advocacy, where she focuses on issues of national importance that affect the health and wellbeing of family caregivers. Ms. Mintz is currently working on the need to have family caregivers identified on medical records, their loved ones’ and their own.  Quote: "Family caregivers need to be included as members of their loved ones’ care team, given the education, training, and on-going support they need to bring about better outcomes and their own health and wellbeing.

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Common Ground

Posted By Noah Gagner, Tuesday, February 4, 2014

The walk to the lobby as a first year therapy intern at a local community clinic never seemed to get any easier. Each time I looked at my schedule and saw a new name, I hoped that in some way I was the right person, and that I had the right skills to help. 

On this particular day, Tim (whose real name is changed) stood up and shook my hand. He was a man in his mid- 30s, and despite his large build and heavily tattooed body shook my hand rather limply. He smiled as he greeted me with a head nod and we made our way down the hallway to my office.

Tim’s motivation for coming to therapy was his increasing anxiety, first formally diagnosed during a recent stay in jail, but present in Tim’s life for as far as he could remember.

Tim was on the verge of losing his housing if he did not evict family members who incited constant police presence and conflict at his home. I could tell from the shaking of his head and his furrowed brow that it was a difficult choice between stable housing or family conflict.

When I inquired more about Tim’s family, he explained, "I never knew my father, I have two brothers that were murdered and another is serving life in prison. I’d probably be there too had I not been in jail at the time.”  The tone of his voice sounded like a list he had recited many times before. Perhaps it was a reality so real and common within his community that to belabor the losses meant to be weak, "not a man”, he would later say. 

As a beginning therapist, I knew each question meant the possibility of intense emotions, ambiguity, and further hurt for Tim. Each answer from him carried the potential of making Tim’s life seem more complicated, more real. 

I did not know where to start so I asked Tim what he wanted to focus on in therapy. "Sarah” he said, "I really want to talk about my relationship with my girlfriend.” 

Each week Tim came into therapy and described his girlfriend as a person whose life seemed equally as chaotic as his. He detailed their relationship as one with conflict that at times seemed insurmountable, heightened by the loss of their unborn child some months earlier. However, he also shared the love he had for Sarah and how he hoped to remain in her life. 
As our sessions continued, the barriers to effective therapy seemed to grow

As our sessions continued, the barriers to effective therapy seemed to grow. I learned how hard it is for a former felon to get a job, and that former gang membership meant it was difficult to freely travel around the local community. Each time Tim revealed another aspect of his complex and chaotic environment, I felt increasingly less able to offer any "real” help. Each week of therapy presented a new challenge, from trying to respond to threats from former gang members, or sometimes even basic tasks like where Tim’s next meal was going to come from.  

In class I had learned about grief and loss, self-actualization, helping skills, how cognitions drive emotions, and how to focus on solutions.  However, each week I felt less and less helpful to Tim. My supervisor would remind me that as therapists there are many times that we feel incompetent.  She reassured me that I was doing good work. 

During this process, however, I began to realize what I was struggling with might be something bigger than our sessions together. My motivation for getting into mental health was initially to help people who looked like me, a biracial African American- Native Alaskan man, overcome barriers in their lives. I think Tim and I connected because I looked like him and represented something that he wanted to become: a helper of his people. Me, stuck in my feelings of inadequacy, and Tim, stuck within the complexities of his life. I had never met someone so ready for action, yet so inhibited by their current circumstances. Despite his sometimes strained relationship with Sarah, we continued to discuss it because it gave Tim hope and was a source of connection in his life. 

Sarah was supposed to be the bridge into deeper work. 

Reflecting back, Tim and I had worked hard on his relationship with Sarah leading up to my very last day as an intern. As this day approached, I was looking forward to my termination session with Tim. By then we had worked together for several months, and we had formed a strong therapeutic relationship. 

Tim was early that day. When I walked in, he was pacing, holding his cell phone.  Tim said, "Noah, I cannot meet today. Sarah is in the hospital on life support. The doctors say that she probably won’t make it.  I need to go.” He reached out for my hand, shook it, and then stormed out.  This time his grip was firm.

I never saw him again. 

Our lives forever complex and briefly connected, I think we both gave each other a helping hand. 


Noah Gagner, M.A., is a doctoral student at the University of Minnesota in the Department of Family Social Science’s Couple and Family Therapy (CFT) Program. His clinical and research efforts focus on family- and community- based interventions to address physical and mental health disparities in minority and underserved populations. He currently works as a CFT intern at RS Eden, a residential chemical dependency treatment for men in Minneapolis. 

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Wooden Box

Posted By Barry Jacobs, Tuesday, January 28, 2014

(This is a companion piece to an earlier post from June 26, 2013. Click here to read the first piece.)

On a scorching day at my step-father’s graveside, I stood slightly outside the circle of 20 mourners, present but distant. In my hands, strange to me, was the wooden box.  I wasn’t thinking about its contents of bone cinders and fine ash but of the surprising coolness to the touch of its dark mahogany veneer and polished brass latch.  I listened impassively to my step-sister’s tearful remembrances of her party-boy father and to her cousin’s choked sobs recalling her favorite, most loving uncle. I had promised myself--especially during his decline from dementia--that I wouldn’t speak at his funeral on his behalf. So I stood watching in silence now, holding tight to his box of cremains.


At the time he married my mother when I was 17, he had little interest in me or use for my impudence. For my part, I hated his sullenness when sober and boisterous prejudices when drunk—so unlike my deceased father. We learned to give each other wide berth, maintaining a tepid cordiality punctuated by infrequent clashes. This worked for over 30 years until he started losing his mind. Because I am my mother’s son and a clinician specializing in treating families dealing with illness, I felt it was my duty to assist my mother with the caregiving. That brought me into greater contact with not only him but many difficult feelings. Like many caregivers before me with a history of bad family relationships, I felt with fresh intensity the old resentment I held for the man I was now committed to helping. 

In his last 3 years, I moved my step-father and mother up from Florida to live in an apartment a mile from me and my family. I went about the enervating business of seeing them several times a week for meals and doctor’s appointments. I visited him (irregularly) after he was placed in a nursing home. To deal with caring for someone I’d long detested, I had to shut off all of my feelings. I had to be rigidly self-contained, keeping up the polished veneer of the grimly resolute caregiver to coolly carry out my joyless caregiving efficiently. On the outside, I myself became a kind of wooden box. Inside, though, I felt empty of purpose and energy at times. I burned with anger, at other times, towards the hostile man he’d been and the vexing burden he’d become.

This was exactly what I always counsel family caregiver clients to strive to prevent—to not lose one’s self during caregiving, to not turn wooden and callous just to keep difficult emotions in check. But it seemed so much easier to completely shut off. What possibility could there be for resolving my past feelings with this vague, addled man in life or death? Yet even as I stood there silently on that July day, I felt a bit chagrined. I was in a responsible enough position at this auspicious moment to closely grip his box. Yet, dreamy in the hot sun, I held myself as far away from the unfolding scene as my psyche would allow. 
On the outside, I myself became a kind of wooden box

And then someone suddenly whisked the wooden box from my hands and nestled it into the shallow, open grave. Others cried; I was too shut off to react. As part of the Jewish funeral ritual, a line formed to shovel dirt over the box but I stood there in a daze. I finally snapped to attention when I saw my 17-year-old son grab the long-handled spade. If he could do religious duty for a step-grandfather he hardly knew, so could I. I got into line and went through the motions of helping bury my step-father.

But though his ashes went underground, I didn’t entirely bury him. For too long, I did too good a job of shutting off and not processing what I felt. Six months after his death, I haven’t shaken all the woodenness. Hard as I try to come to terms with my relationship with him and put him to rest and myself at ease, I still find the box sealed. I’ve wound up carrying its weight and burden still. My hands still tightly embrace it.


Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (2006, Guilford) and the forthcoming Caregiving Family Stories & Beliefs, a collection of 25 of his previously published essays and case stories on families and illness.

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Partnering with Oncology Providers and their Patients: Lessons Learned

Posted By Laura Lynch, Maureen Davey, Tuesday, January 21, 2014

(This blog post is a follow up to an earlier piece. To read the first post, click here)

We recently described our pilot study which was designed to evaluate an Emotionally Focused Therapy "Hold Me Tight” couple support group that was adapted with Dr. Ting Liu and Dr. Lydia Komarnicky to help couples in which one partner has been diagnosed with cancer. Our study’s design and recruitment strategies have required consistent collaboration with a diverse group of providers embedded in a busy oncology clinic. We believe that the lessons we have learned may be helpful to other medical family therapy researchers who want to help patients and families who are coping with a chronic illness like cancer.

We chose to partner with Drexel University’s Radiation Oncology Clinic for this pilot project for two reasons. Most importantly, this cancer center provides access to the patient population we wanted to study: racially diverse patients who are coping with cancer and their partners. Additionally, we had developed a positive working relationship with the staff and providers through previous oncology support group intervention studies; therefore, we felt we would be able to effectively partner with them again to conduct this study. When we explained the purpose of our pilot study to the staff and providers at several group meetings, and identified how it could benefit their patients, they were more than willing to help us get the word out and recruit patients in their oncology practices.

Due to HIPAA regulations (which protect patients’ rights to keep their cancer diagnoses and treatment private), our research team is not able to directly approach cancer patients about this study. So, our study is first being presented to patients by Drexel Radiation Oncology personnel, including oncology providers, social workers, family therapy interns, nurses, a creative arts therapist, and a nurse navigator. Once patients express an interest in the study and sign a waiver permitting their diagnosis and contact information to be shared with our team, they are contacted and screened for inclusion in the study. Our research team has had to maintain consistent communication with these busy providers who are recruiting for us. We do this through weekly email check-ins and reminders, and in-person meetings. We invite and incorporate feedback from providers as well. For example, we ask how to best support each of them in recruitment (e.g., how and when to best reach out to them for check-ins), and want to hear about cancer patients’ responses to the study when it is presented to them. The challenge of not being able to directly approach oncology patients is that providers are often very busy and study recruitment is not their first priority. Yet, the benefit of partnering with this multidisciplinary team is that patients are able to hear about the intervention study from trusted providers with whom they already have a relationship. In order to build rapport, engage, and join with cancer patients and their partners, the principal investigator (Maureen Davey) makes the first call to all patients after they sign the waiver to be contacted. She stays in contact with cancer patients and their partners by mailing cards, sending emails, calling, and sending text message reminders, based on the patients’ preferences. She also provides them with her contact information and makes herself available for any follow up questions or concerns patients and partners may have.

There are several challenges we have experienced conducting this ongoing study. Many of the patients at the clinic are of lower socioeconomic status, which can make consistent participation in a multi-week intervention study (6 two-hour bi-monthly sessions over a period 12 weeks) a challenge because of financial barriers. Additionally, the cancer and side-effects from treatment (e.g., fatigue, nausea) can interfere with regular participation. Therefore we have made it a priority to remove as many potential barriers as possible and remain flexible. We provide public transit tokens or parking validation for participants, as well as free childcare for participants’ children during the group intervention sessions. We received IRB approval to pay each individual participant 10 dollars ($20 per couple) per session for the 6 sessions, so they are given a small financial remuneration for their time. We also budgeted for food so we that we are able to provide snacks for participants during the sessions; we first ask participants for their food and beverage preferences and do our best to accommodate them. Before each support group begins, we ask all participating couples about their preferences for the days and times of the group (e.g., weekends versus weekday evenings). The scheduling of the group sessions is based on consensus. If a couple misses a session (e.g., the partner with cancer is too ill to attend because of the treatment side effects), we work with the couple’s schedule to do a makeup sessions so that they can continue with their cohort for the remainder of the intervention sessions. We believe that it is essential to warmly join, engage, and collaborate with all participating couples to ensure that we are serving their unique needs as much as possible.
Building successful partnerships will take time, flexibility, and patience

Regarding lessons we learned, we recommend that family therapy researchers who want to partner with medical systems need to first identify one or more medical providers who understand the importance of family therapy interventions and who can be a champion by helping the researchers make connections with other providers who have access to the patient population. Clinical researchers should meet with providers whenever their busy schedules allow and explain how the intervention can benefit both cancer patients and the providers. It is also essential to elicit ongoing feedback from providers in order to make any necessary adjustments to better partner with them. Inviting this ongoing feedback also lets providers know that they are valued stakeholders in the research process. Ultimately, building successful partnerships will take time, flexibility, and patience. As medical family therapy researchers, it is important to demonstrate to providers that you will not abandon them once your study is completed, but rather you will be a long-term partner with the goal of supporting providers and helping to meet the needs of the patients and their families. Before you start planning any study in a medical system, take the time to familiarize yourself with the system so you can understand how patients are assessed at intake and evaluated, as well as any potential barriers to treatment that need to be overcome. If medical family therapy researchers first take these steps and remain patient, flexible, and consistent, then successful collaborations with medical clinics are more likely to be successful and sustained.


Laura Lynch, M.S. is a doctoral candidate in her third year at Drexel University’s Department of Couple and Family Therapy. She received her Master’s degree in Marriage and Family Therapy at the University of Rochester. Laura’s clinical research focuses on developing interventions to help couples and families cope with chronic illness. In collaboration with Dr. Maureen Davey and Dr. Ting Liu, she is currently conducting her dissertation study to adapt and evaluate Hold Me Tight for a diverse sample of couples coping with cancer. She is also completing her doctoral clinical internship at Drexel Medicine’s primary care practice. Her research interests include addressing health disparities by developing culturally sensitive relational interventions, examining how chronic illness affects couple relationships, and children’s experience of parental illness, in particular parental cancer and diabetes.


Dr. Maureen Davey is a licensed marriage and family therapist in the state of Pennsylvania, an AAMFT approved clinical supervisor, and associate professor at Drexel University in the Department of Couple and Family Therapy. Her clinical research examines how different relational and cultural contexts contribute to the experience of health disparities. She has been the PI on several state level foundation intervention grants designed to develop culturally sensitive family interventions for families coping with parental cancer and is now working on securing funding to further develop the intervention with African American families coping with parental cancer. In collaboration with Dr. Ting Liu, Dr. Lydia Komarnicky, and Laura Lynch, she is currently conducting a pilot study to adapt Hold Me Tight for couples coping with cancer.

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Moving Beyond the Hospital: Medical Family Therapy in Fieldwork

Posted By Tai Mendenhall, Tuesday, January 14, 2014

I, like most of us, will never forget September 11, 2001.  As our nation – and, indeed, our world – watched in horror as the day’s events unfolded in New York City and Pennsylvania, I think that my desire to do something to help was both impassioned and commonplace.  We all wanted to help, in whatever ways we were able.  I was a graduate student back then, and when I was asked by one of my professors to join a trauma-response team being mobilized to NYC, I dropped everything and went.  En route (in an otherwise deserted airplane), several of us participated in an intensive just-in-time training regarding Psychological First Aid and Ambiguous Loss.  When we arrived, our team joined a number of other teams and began to do a type of mental health work that I had never done before.  It was one of the most awful, painful, terrible, inspiring, and amazing experiences of my life. I returned a different person.  

I have continued to serve in fieldwork ever since that September.  Today, within the capacity of a faculty role at the University of Minnesota and through the lenses of a trauma responder, trainer/supervisor, and team coordinator, I offer the following as some of the things that I see to be Medical Family Therapy’s (MedFT) principal contributions to this effort:

Creating Meaning

One of the most common questions that people struggle with when they are hurting is "Why?”  When someone is living with depression, he asks "Why do I feel this way?” When relationships are dissolving, couples ask "Why are we fighting like this?”  In conventional therapy, clinicians can work with people who desire such insights by connecting a presenting problem to historical or present-day circumstances that somehow help it "make sense.”

Our efforts to engage those who are suffering to create meaning is importantIn fieldwork, we do not have this luxury (e.g., weekly visits until treatment is defined as "complete”). However, our efforts to engage those who are suffering to create meaning is still important (if not more important). And because MedFTs are comfortable working with multiple people at once, we can support and facilitate conversations and conflict that can be extraordinarily painful and/or newfound narratives that are profound and empowering. For example, a couple I worked with who lost their child to a tornado came to believe that their experience was God’s way of reuniting their extended family after years of emotional cut-offs. A boy I worked with who lost his mother in a hurricane was initially inconsolable because he could not understand how the "all-knowing” and "all-loving” God she raised him to believe in could take her away like this. Normalizing and empathizing with this young man’s pain, while engaging his father and sisters to begin a longer journey with him to make sense of what had happened to (all of) them, helped to ease his acute grief and anger.

Coping with Ambiguous Loss

When there is a mismatch between a loved-one’s physical and psychological presence, families are faced with a complicated type of loss that is not "normal” in the sense that we usually think of when we think about "loss”. In the aftermath of a traumatic event, family members of a missing person often do not know if s/he is still alive (e.g., displaced in an unknown area without cell phone coverage, buried – but still alive – under rubble). And if the person has, indeed, been killed, families may never have tangible confirmation of this fact (e.g., because the body was lost forever to the ocean or vaporized in an explosion). How can families cope or support each other when some members believe that their loved one is still alive while others still believe that s/he is dead?How can they have a funeral without a body?

MedFTs are well-equipped in situations like this to listen to and process family members’ respective views. Sometimes they must agree to disagree.  They may even embrace their ambiguity and ambivalence. Other times families align together in new and co-created narratives to say "goodbye.” For example, several families I worked with after the East-Asian tsunami walked along the beaches during low tide in search of things that the sea had "given back” to them. As they found things that they believed belonged to their loved ones (e.g., clothes, shoes, toys), many found peace in personalizing these things to represent those they had lost. Then they would bury the items in a funeral like they would if the items were human bodies.

Loving and Appreciating Each Other

Oftentimes disasters remind us – albeit too late – that the people who mean the most to us are usually the ones that we tend to take for granted and/or treat the worst. I recall a couple who were planning to have a dinner party one evening. After having agreed to who was going to pick up what after work to get ready, the husband called and asked (told) his wife that he needed to work later, i.e., that she would have to do his errands for him. They escalated in conflict because she was afraid that this would translate into not having enough time to prepare dinner. The husband started yelling at his wife, and finally hung up on her after accusing her of "not being supportive.” On her way home (about 30 minutes later than originally planned), she was killed in a construction accident. I remember a mother who missed her daughter’s piano recital because she, too, wanted to work late. She chastised the daughter’s distress about having her mom miss the performance, maintaining that there would be "plenty more recitals.” The child was murdered the next day in a school shooting.

MedFTs are readily able to facilitate meetings in which surviving victims of trauma review their lives and develop new or enhanced appreciations for the blessings they have. Working in the field across both natural- and human- made disasters, I have talked with many who have expressed overwhelming grief for the dead, alongside great relief for those who are living. They communicate newfound realizations about how physical things like houses and cars – unlike people – are just "things” that can be replaced. They talk about how they understand now that there is so much more to their lives than work. They stop reserving the words "I love you” for when they say goodbye on a telephone call or write well-wishes in an obligatory birthday card; they begin saying it often and every day. And they mean it.  They stop giving each other the silent treatment during conflicts because they understand that no one knows when or how somebody they care about might be taken away from them. 

Reevaluating our Scope(s) of Practice

I often see new professionals struggle to figure out where the overlaps and gaps are between what they can do and what other team members can do in the field. For example, is it alright for a MedFT to assist medical providers in cleaning wounds, drawing up vaccinations, or opening packages of sterile surgical instruments in preparation for emergency procedures? Should a physician provide emotional support if there is a mental health provider on the team? Can a nurse assess for someone’s suicide risk, or chase them if they bolt? Scholars in MedFT and collaborative healthcare have called for purposeful consideration of questions like these in everyday practice; members of interdisciplinary disaster-response teams must do this as well. 

Some situations call for a distinct skill set (e.g., a medical provider to flush tear ducts or set a broken bone), but many do not. And to be clear: working as a MedFT in fieldwork does not mean that you only provide mental health services. I, along with other family therapy colleagues, have indeed cleaned wounds, prepared vaccinations, and assisted medical providers during emergency procedures. So too have we stocked and distributed food and water, raised shelters, organized and run staging areas, and cleared rubble. We have served as greeters at family assistance centers, held off media, reunited family members and pets, and distributed information about local resources and charitable organizations. We have looked through pictures of the dead (e.g., taken before they were buried in mass graves) with families as they search for confirmation of what they hope is not so. We have looked through destroyed homes with survivors in search of treasured photographs and possessions. Physicians, nurses, medical assistants, social workers, psychologists, and lay community volunteers have done all of these things – and many others – as well. 
Working as a MedFT in fieldwork does not mean that you only provide mental health services

Avoiding Compassion Fatigue

Compassion fatigue, as we all know, encompasses a breaking down of our emotional, physical, and even spiritual resources. This is an occupational hazard for any provider in healthcare, but the intense nature of fieldwork is something that can easily push us over the edge. 

MedFT’s systems orientation requires that we, as providers, understand how our own functioning influences the patients and families that we serve. This is important because impaired providers (of any type, representing any discipline) can harm the very people they are supposed to help. Field supervisors thereby work to ensure their team members’ safety by limiting any deployment to two weeks in duration, and we only allow members to work up to three sequential days before taking (at least) a day to recover. We encourage consistent attendance to physical and mental health through regular group processing and debriefing, frequent hydration, snacks, and rest. We organize our teams by twos (i.e., buddy systems) to help ensure this, and we connect members to specialized support during- and after- deployments when and as indicated.

Closing Thoughts

As I intimated earlier, my work in trauma-response teams represents some of the most difficult and rewarding work that I have ever done. Whenever I return from a deployment, my colleagues and students ask what it was like, what I learned, or what experiences I will remember or affected me the most. Answering these questions is difficult because the experiences of "being there” are not well described in words, stories, or pictures. I encourage them to become involved, themselves.  Many have. When they do, they grow to understand.  I similarly encourage you, the reader, to engage in this type of work. Bring to it your skills and talents as a MedFT, and collaborate with colleagues from other disciplines united in the same mission. Then you will know.  And you will never be the same. 


Tai Mendenhall is an Assistant Professor at the University of Minnesota (UMN) in the Department of Family Social Science, the Associate Director of the UMN’s Citizen Professional Center, and the co-Director of mental health teams within the UMN’s Academic Health Center / Office of Emergency Response’s Medical Reserve Corps (MRC). He is the co-Coordinator of Behavioral Medicine education at the UMN / St. John's Family Medicine Residency Program (in which he teaches and supervises doctoral MedFT interns and family practice residents), and holds an adjunct faculty position in the UMN's Department of Family Medicine & Community Health. Dr. Mendenhall’s principal investigative interests center on the use and application of community-based participatory research (CBPR) methods targeting chronic illnesses in minority- and under-served patient and family populations.

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Contact Us

P. O. Box 23980,
Rochester, New York
14692-3980 USA
info@CFHA.net

What We Do

CFHA is a member-based, 501(c)(3) non-profit organization dedicated to making integrated behavioral and physical health the standard of care nationally. CFHA achieves this by organizing the integrated care community, providing expert technical assistance and producing educational content.