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Caregiving Lessons From Movies and Books

Posted By Barry Jacobs, Wednesday, June 25, 2014
(This blog post is a reprint of a piece by Dr. Jacobs from AARP Caregiving Resource Center. It has been reprinted here with permission from AARP. Click here for the original post.)  

"The light … drew out of the darkness her puckered throat and …. deepened fantastically the hollows … of her high-boned face." Thus did novelist Edith Wharton describe in her 1911 novella, Ethan Frome, a disgruntled family caregiver's negative, macabre perception of his chronically ill wife. (Maybe you remember reading it in high school.)

Over a century later, our population is much older, and family caregiving is more prevalent than ever. It is little wonder, then, that more and more American movies and novels are portraying brave and beleaguered family caregivers. As with the best artistic creations, they convey psychological truths more credible and profound than those found in works of nonfiction. They illustrate the challenges that caregiving families face, validate our own negative and positive perceptions, and sometimes offer instructive pointers.
 

What's more, they provide hard-pressed caregivers the momentary relief of getting lost in imaginative and compelling stories. Here are six of my favorite movies and books with a caregiving theme.

 Amour

An Academy Award winner for best foreign language film, this 2012 movie tells the story of a mostly devoted, octogenarian husband caring for a wife who's descending steadily into vascular dementia after a series of strokes. The director gives us an unvarnished depiction of a couple's life of misery while coping with illness — the unending moans of pain, the backbreaking bed and shower transfers, the claustrophobia of being largely confined to one's own apartment — as well as the disappointing support systems of unreliable and abusive home health aides, ineffectual doctors and nurses, and self-absorbed adult children. As vivid a glimpse of suffering as this movie paints, it is no vision of ideal caregiving. The husband is too rigid, trapped by promises made. He aggressively stymies his daughter's efforts to help out and fails to recognize or seek treatment for his disabling depression. His final solution to their problems may strike some as compassionate but, in my mind, represents sustainable caregiving's ultimate failure. View this movie for its meticulous acting, not as a model for action. 

​The Descendants

In this 2011 movie, George Clooney plays a man whose wife becomes comatose after a boating accident. It's more a depiction of end-of-life issues than caregiving issues, yet it conveys two important lessons for all caregivers: The husband's and children's ambivalent response to the wife's plight is a reminder that emotional reactions are never just about the current medical crisis but are always shaped by events and interactions in the past (in this case, the wife's affair). The movie also teaches — through its final scene where the father and daughters cuddle up on the couch to watch a movie — that families do endure and can heal, even after horrific losses.

Robot & Frank

This 2012 comedy is about an aging ex-convict (Frank Langella) who still lives alone despite the fact he can no longer remember or reason. His adult children persuade him to try out a futuristic robot butler that will awaken him, feed him balanced meals and force him to exercise daily. Instead, the former jewel thief instructs the robot to go on a crime spree in the neighborhood. The take-home message: Caregivers should take into account that even dementia care recipients may retain some formidable wits and skills.

The Savages

Caregiving can make you a better, more mature person. That is Hollywood's rosy lesson for caregivers here. In this inspiring 2007 movie, a brother (Philip Seymour Hoffman) and sister (Laura Linney) decide to step up and care for their elderly, demented father — from whom they were estranged for many years because of his physical and emotional abuse. They alter their professional and personal lives and grow emotionally through the process of advocating for him in his antiseptic nursing home. After his death, they reap the reward of being able to make deeper, more sustainable commitments in their personal and work relationships.

Scar Tissue

A tortured son caring for his demented mother doesn't fare nearly so well in this novel by biographer and politician Michael Ignatieff (Farrar Straus & Giroux, 1994). Its story contains many familiar components — including sandwich generation torment, rivalrous siblings and determined attempts to win a distant parent's approval — but amounts to a cautionary tale about compulsive caregiving. For Ignatieff, there's a thin line between virtuous self-sacrifice and vexing self-destruction propelled by guilt. His pointed lesson is that the too-obsessed caregiver eventually loses his sense of self as assuredly as the care recipient with dementia.

Living in the Land of Limbo

This new collection of short fiction and poetry about family caregiving, compiled by AARP contributor Carol Levine (Vanderbilt University Press, 2014), includes stories of both tortured and enlightened caregivers by such noted writers as Alice Munro, Raymond Carver and Mary Gordon. In "We Are Nighttime Travelers" by writer and physician Ethan Canin, an elderly man with diabetes complications uses his growing confusion to reach out to his longtime but distant wife. The couple embraces for the first time in a decade after a night of strange behaviors caused by his delirium. ("My hand finds her fingers and grips them, bone and tendon, fragile things.") Canin's short story is a reminder that, even with illness' slow decimation, sweetness remains when caregiver and care recipient find a way to turn toward each other.



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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Preparing to Fly

Posted By Stephanie Trudeau-Hern, Monday, June 16, 2014
Family-centered care was an inherent concept in my mind long before I could put language to the phenomenon. At 19 years of age, I bore witness to an exhausted mother of three who held two full time jobs. The first was considered a normal, socially accepted job. It paid the bills and provided basic necessities to keep a small household afloat. Her second job was a little more obscure; it was a job for which she had received no training, no support, no pay, and no recognition. She, at 37, became a spousal caregiver. Back in 1998 this was a foreign concept to healthcare systems in rural North Dakota. Caring for the caregiver, or even recognizing the impacts caregiving had on spouses and families, was essentially ignored. The patient, my father, was diagnosed with a rare autoimmune disease that rendered him physically, socially, and emotionally incapacitated. 

Fast forward 16 years…..

“He who would learn to fly one day must first learn to stand and walk and run and climb and dance; one cannot fly into flying.” ~Nietzsche
 

I am currently standing on the cusp of an evolution in healthcare; I am preparing for my time to fly. I have the opportunity to participate in a movement that has become my life’s mission, expanding the limited definition of “patient” to include the family as a unit of care, or the lens through which we advance treatment.

What is family-centered care? Who are family caregivers? I feel compelled to break this down into such a basic form, keeping in mind that not everyone reading my post has been bathing in the Collaborative Care Kool-Aid fountain that I have. Frank de Gruy, Susan McDaniel, Barry Jacobs, John Rolland, Bill Doherty collaborated efforts with Theodora Ooms, Jana Staton and Mary Myrick, of the National Healthy Marriage Resource Center (NHMRC) proposing additions to the Better Care, Lower Cost Act.

We need a common footing, and that footing is family-centered language In their document, the proposed language of family caregiving is as follows: “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”.

Family-centered care as posed by AARP’s Person and Family-Centered Care (PFCC) definition is: “an orientation to the delivery of healthcare and supportive services that addresses an individual’s needs, goals, preferences, cultural traditions, family situation, and values. PFCC can improve care and quality of life by its focus on how services are delivered from the perspective of the older adult and, when appropriate, his or her family. PFCC both recognizes and supports the role of family caregivers, who often are critical sources of support for older adults with chronic or disabling conditions”.  

I am not here to give you a lesson on definitions, but I do believe we all need a common footing to move forward, and that footing is the common family–centered language from which we hope to operate. Why do we still need to educate others on concepts that seem so inherent to the patients and families affected by chronic illness? During my time as a Medical Family Therapist in an oncology center, it always astonished me that patients, spouses, and family members so easily grasped the concepts of family–centered care. When I would explain my systemic and relational approach to therapy, they would look at me and say, “Well yeah, isn’t that normal?” They got it; they lived it day in and day out. What they didn’t get was why the system they were entrusting their care to did not fully understand or address their complex needs. I found this disturbing. I realized that little had changed from when I was 19 and watched mother flail around lost in a systemic sea of individualized illness care plans.

Re-visiting the philosophical musings of Friedrich Nietzsche.

Before I can even begin to claim that someday I am going to play a pivotal role in affecting change, I have to recognize where I’ve been, where I’m at, and where I am going.

-I first learned to stand when I was embedded in a family system that was cloaked with chronic illness.
-Walking took place once I removed myself from that system and had a better look at the complex disruption my father’s illness had on every member of our family.
-My running phase took place the day my hands opened John Rolland’s Illness and Disability. The concept of family as patient changed my life.
-Climbing entailed changing careers, getting my masters in family therapy, and pursuing a PhD.
-The dance phase is where I am currently situated. The venue is my research assistantship, and family-centered integrative care models are my jam.

I am a fourth year doctoral research assistant working within a population health study aimed at late-life, chronic illness patients and families. The study, called LifeCourse, http://lifecoursemn.org/ is testing an integrative care model that is based on understanding what matters most to patients and helps them to live according to their values and wishes. Among the study’s goals are improved quality of life and care experience for patients and families, more informed care decisions leading to better use of health care resources, and improved job satisfaction of doctors, nurses and other care team members. I am one of three family systems professionals (clinicians, educators, researchers) on the project. Since I began, I have scoured all aspects of the project from a family and systemic lens. I am continually asking, “Where is the family?”, “How does this impact the caregiver?”, “How are we assessing family?”, and “Who is the patient?” Maybe I am pushing the boundaries a little bit. Maybe I’m driven to help others learn from my experience. The way I see it, if those of us trained in family and systems are not the in the shadows feeding the notions of family-centered care to people in the front lines, who will? Let’s all recognize our chances to re-envision chronic illness care from patient-centered to family-centered. I am certain I have been prepping for this event most of my adult life and I refuse to miss my chance to fly. 

Stephanie Trudeau-Hern, MS, LAMFT is a doctoral student at the University of Minnesota in the Department of Family Social Science - Couple and Family Therapy Program. Her clinical and research interests include family-centered healthcare, integrative behavioral health, family coping with chronic illness, end-of-life issues, and provider self-care within collaborative health care teams. She credits her two little monkeys for being the most influential teachers of life, love, play, and well-being.

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Medical Family Therapy: A Call to Action

Posted By Laura Sudano, Tuesday, May 27, 2014
The journey into HTML formatting started with a random e-mail in November 2013 to Dr. Randall Reitz, Director of Behavioral Sciences at St. Mary's Family Medicine Residency. In the e-mail to Dr. Reitz, I asked how to gather resources for Medical Family Therapists (MedFT) that would be accessible to everyone. In his response, Dr. Reitz presented a challenge, “Let me offer one slightly large tweak ... I suggest we take your idea and create a Medical Family Therapy Wikipedia page.” 

For those of you who are curious or just happen to like big numbers, Wikipedia is a free-access, collaboratively edited Internet encyclopedia with 18 billion page views and 500 million unique visitors a month. There are 30 million articles in 287 languages, including over 4.5 million in English. Although there are some issues with writing quality and accuracy, Wikipedia has an editing process that requires verifiability and a neutral point of view.
 

Fast forward to May 2014, there has been one (1) attempt to publish a Wikipedia page on Medical Family Therapy (see Health Psychology page for a template of the vision for our Medical Family Therapy page). Once it was published, Wikipedia editors criticized the field of MedFT as being a novel concept and without secondary sources added to the page, the page would be deleted. There were more secondary sources added; however, the changes did not suffice as the editors also pointed out that they wanted more than one voice present in the creation of this page. As Woody Allen once said, “If you're not failing every now and again, it's a sign you're not doing anything very innovative.” To further flood this piece with success/failure quotes, I find that the following quote from Deepak Chopra is fitting to not only this situation, but to the larger mission of CFHA, “Success comes when people act together; failure tends to happen alone.”

As such, I am asking that you, the CFHA community, contribute to the greater community and help create this page as an innovative, successful step within our profession. I imagine this page meeting two goals:

1. Allow the MedFT field to be accessible to the public so that people with whom we work or are introduced to us can be informed about who we are and what we do (patients, physicians, and other colleagues); and

2. Inform prospective therapists of what we do and where they can go for training at different stages of their career.

You can contribute! As the collaborative care field continues to grow in not only membership but training and certificate programs alike, I am requesting a call to action: Help re-create the Medical Family Therapy Wikipedia page. If you are reading this thinking, "Laura, I have no idea how to do this Wikipedia thing!" Not to worry. You don't need to be technologically savvy to participate. You can contribute. The requirement is that you bring passion to this creation. 

Here are a few ideas that I believe are the next steps in the creation of our MedFT page:

• Recruit a task force of contributing editors who will write sections for the page.

• For those who are interested, I will send out an online survey to all contributing editors regarding what they feel would be helpful sections for a Wikipedia page (e.g., History, Clinical Approach, Training Programs, Job Opportunities, Controversy in the Field, etc.)

For those who cannot join the task force, I encourage you to e-mail me if you want to volunteer to review the page upon completion and/or have ideas, resources, or other articles.

I am excited about the opportunity we have to reach out to others in the public domain. I am looking forward to your contributions and ideas to help the creation of our MedFT page. If you want to take action together and be part of this innovation, please reach out and e-mail me at laurasudano@gmail.com. I am looking forward to your innovation and collaboration.

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Visiting Aunt Betty: From Primary to Specialty Care

Posted By Kenneth Phelps, Tuesday, May 13, 2014
Over the last four years, the Smith’s quiet existence has been disrupted by a series of obsessions, compulsions, motor tics, and vocal tics. It all started when their seven year old son, Michael, began to blink and roll his eyes rapidly. At first, like most parents, Keith and Tanya Smith assumed this may be related to allergies. As the symptoms persisted and generalized to turning his head from side to side, throat clearing, and shoulder shrugging, the parents knew something more was wrong. Their pediatrician referred them to a neurologist who diagnosed Michael with Tourette Syndrome due to the presence of both simple and motor tics. Shortly thereafter, the Smiths noticed their then thirteen year old daughter, Allie, began taking extended time to get ready in the mornings. When checking on her, they would see her tapping in increments of four, flicking light switches, and insisting on passing items back and forth in a specific visual path. A thorough interview with a mental health professional revealed the presence of obsessive compulsive disorder (OCD). Having discussed these respective diagnoses with specialists and various treatment plans, the Smiths were left wondering how they could support their children, as well as how they could take advantage of the best the medical system has to offer as a means to effective symptom management.  

Four years later, Allie recently obtained an acceptance letter from a major university. She hopes to study psychology, feeling inspired by the work she and her family did with a therapist and psychiatrist. She participated in Exposure and Response Prevention (ERP), a cognitive behavioral therapy for OCD. Michael is now in the throes of puberty, which can be quite challenging for a person living with Tourette Syndrome due to the common increase in tics. While this could be the case, Michael has an artillery of techniques learned through the evidence-based approach of Comprehensive Behavioral Intervention for Tics (CBIT). He now knows how to detect the premonitory urge preceding his tics and engage in his competing responses (or “exercises”) to quail the tics’ impact on his quality of life. While his tics continue their waxing and waning cycle, he is much less bothered by their presence, instead shifting his focus to running track and field.

Two elements core to CFHA were the tipping point to their success So what led the Smith kids to succeed in treatment? Their engagement in care and motivation undoubtedly led to much of their progress. Additionally, two elements core to the Collaborative Family Healthcare Association was the tipping point to their success: 1) involvement of the family and 2) close collaboration. Keith and Tanya Smith were involved in all elements of treatment. For Allie, they learned about how to disentangle themselves from OCD’s grip on their family life. Where they would have originally accommodated OCD’s demands to repeat something in just the right manner or hand an item from left to right at the dinner table, the parents learned to help Allie “talk back to OCD” and realize that her anxiety would eventually subside through exposure to such situations. They reinforced Allie’s gains through labeled praise and special dinners out. These gestures of positive reinforcement were not isolated to Allie. The Smiths also identified factors that worsened their son’s tics, including technology time, speaking about the tics, and when frustrated by chores or academic work. They worked closely with professionals to remind Michael of his exercises and reinforce his engagement in the behavioral plan. The family’s participation in treatments was crucial to ensure each youth had a supportive context to complete the therapeutic work. Family meetings with all parties helped to strike a balance of togetherness and separateness while they combated the influence of OCD and tics in their lives.  

Equally important as family involvement was communication and coordination among professionals. While integrated care is an increasingly common occurrence within the patient centered medical home, what happens to communication when a child or family visits a distant home down the street? Certainly, a therapist located in the pediatric office could have done some of this diagnostic and therapeutic work. However, many pediatricians would want a neurologist or psychiatrist specialized in the complexities of OCD or Tourette Syndrome to be involved until stabilization occurs. This is just what happened for the Smiths. While they were referred to a neuropsychiatric clinic several blocks down from their pediatric office, the specialist team updated the primary care team every 3 sessions about treatment goals and progress to date. This was vital to ensure conflicting recommendations did not occur, medications could be updated in both records (as they didn’t share records at this point), and that Allie and Michael’s care could remain centralized at the pediatric office. Through this collaboration, their pediatrician learned to remind Allie to “wait out the urge to do the compulsion and talk back to OCD.” Once stabilized, she continued to refill Allie’s medication and monitor for relapse. The pediatrician also became more nuanced in asking about premonitory urges and competing responses associated with tics, leading to better identification of other children in the practice who may benefit from behavioral and familial interventions for moderate to severe tic disorders.

 If the pediatric office is the medical home, the specialist office is akin to visiting a relative’s home for the summer. We certainly wouldn’t send our children to Aunt Betty’s home from May to August and never speak to Aunt Betty during this time. Because we care about our children, we need to know Aunt Betty’s perspective on how they are doing, any challenges she is facing, and when the kids will come back home. Similarly, it is vital for communication to flow reciprocally from medical home to specialist home so all are aware of diagnoses, treatment plans, and prognosis. Collaborative care extends far beyond a conjoint interview of a patient that involves both a medical and mental health professional. It is being mindful of the large silos that exist in our system, which require persistence and consistency in communication between involved providers. This generates mutual learning and improved outcomes for the patients and families we serve.  

Kenneth W. Phelps, Ph.D. is an Assistant Clinical Professor in the Department of Neuropsychiatry and Behavioral Science at the University of South Carolina’s School of Medicine. He is a Licensed Family Therapist with a doctorate in Medical Family Therapy. He specializes in the treatment of individuals, couples, and families coping with a variety of chronic medical conditions. Dr. Phelps completed training in CBIT from the Behavioral Institute of the Tourette Syndrome Association. He provides therapeutic services alongside pediatricians, neurologists, and psychiatrists in an academic medical practice.  

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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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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.