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Reality, Hope, and Denial

Posted By Jackie Williams-Reade, Tuesday, May 1, 2012

Hope was the first thing I noticed when, in college, I volunteered at a camp that served adolescents and young adults who were diagnosed with cancer. I walked in expecting to see, at best, moderated sadness, or at worst, utter despair. To me, these seemed like normal responses to a diagnosis of cancer at such a young age. Instead, I was surprised by hope. The campers I met were, on the whole, optimistic about their futures and wore bright smiles most of the day. At times, I was inspired by their joy. In other moments, I felt their hope looked a lot like denial. As I have continued my career working with children and adolescents who have life-threatening or life-limiting conditions, I have become better acquainted with hope and denial and come to realize that there is, indeed, a fine balance of both that is needed to survive the uncertainty associated with serious illness.

For this blog post, I will call reality the objective sense of what actually is the diagnosis, prognosis, and treatment of a disease. (My social construction leanings are well aware that even that reality is subjective, but let’s just leave it at this meaning for now.) Hope is beautifully simple and complex all at the same time. While hope is grounded in an array of values and beliefs and comes in many forms, it is mainly a sense of optimism. This optimism helps a patient or family member cope with the seriousness of their reality. Hope is an adaptive behavior to have in the face of a challenge.


The relationship between
hope and denial is a delicate one.

Denial, on the other hand, has a pathological connotation and is understood as hope gone dangerously awry. An individual or family are "in denial” when they are defensive to hearing new information, become increasingly defensive upon hearing bad news, and begin to block out all new information, which then interferes with proper decision-making and coping with the reality of the situation. Whereas most people would typically agree that hope should be supported when coping with a medical illness, I find that once a patient is labeled as "in denial” their concerns are more often dismissed and we begin to shut out our understanding of and appreciation for the reasons why a patient or family member is not accepting their painful reality. When we consider a person in denial we may very well stop being curious about their situation which severely impacts our capacity to help.

Hope and denial are both normal reactions to a stressful and terrifying diagnosis, and both states of being may actually be necessary and helpful for patients and family members as they face a chronic or critical illness through its various stages and developments. While hope can go too far and lead to unrealistic optimism (which we label denial), this perspective can also lend itself to reducing the terror and excruciating pain associated with the potential loss that is at stake with a serious illness. It is normal to resist bad news, to not want to integrate the new information.

We all have experienced moments of denial when we encounter situations that we want to desperately escape from in our own lives. While I am not espousing that we allow denial to run rampant, I do suggest that we reconsider the role denial plays in a patient and family’s coping process and ask ourselves a few questions. Are we witnessing a family that is still holding on to hope as a positive coping strategy? Does the patient or family have the same understanding of the medical information or experience we are privileged to hold? Have we considered what could result if the family did fully accept their condition and understand the role denial is playing for them? Do we respect that different people need different amounts of time to integrate difficult news? Have we considered how our communication with the family could be influencing their response?

Overall, I have learned that the relationship between hope and denial is a delicate one. When I am tempted to say someone is "in denial” it now triggers me to further ponder the impact that acceptance of their reality would have on themselves and their loved ones which allows me to see more clearly why they are holding onto hope for dear life.

Jackie Williams Reade, PhD is a Postdoctoral Fellow at Johns Hopkins University in Baltimore, MD. She received her Master’s in MFT from Seattle Pacific University and her PhD in Medical Family Therapy at East Carolina University. She is also the administrator of the Medical Family Therapy Group on Facebook.


 



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Connected by Cancer

Posted By John Rolland, Wednesday, April 25, 2012

John Rolland
CFHA's Growing MedFT blog invited
Dr. John Rolland of the Chicago Center for Family Health to provide his insights and reaction to recent research documenting the connection between a wife's cancer diagnosis and the stress/health of her husband. This
link will take you to the original research report.


This study struck me as important on at least four levels.The findings highlight: 1) the impact of the wives’ cancer on the spouse/partner; 2) the impact of disease status on spouse (here recurrence vs non-recurrence of breast cancer), 3) the impact of perceived stress on the spouse/partner (here measured by immune system status), and 4) the mutual relationship between well and ill spouse emotional and physical wellbeing (and for ill spouse - treatment adherence, and the always interesting question of disease course/outcome).The effects of major illness on the spouse/partner and the unique aspects of the experience for couples remain "neglected edges” in both the general biopsychosocial and broader family literature.

Clearly, spouses are affected by both disease status and perceived stress.This is very consistent with the perceived risk research related to genetic risk, where perception of risk of getting a genetic condition and its course/outcome is more strongly associated with psychological wellbeing than actual genetic risk.With cancer and the possibility of recurrence or a fatal outcome (what I have coined as "anticipatory loss”), the perception of risk and associated level of stress is longterm.I have had patients/families, where even 30 years after initial cancer treatment, they still experience terror that any "unclear” physical symptom may be a recurrence.

The study underscores the vital importance of family/couple-oriented consultation close to the time of diagnosis.Also, it highlights the value of including ongoing periodic consultation with a couple in addition to consultation with the broader family system.As part of that process, I always inquire about sensitizing illness experiences in ones past as well as cultural meanings (cancer, genetics) /illness narratives that are imbedded in levels of stress.For me this is not just looking for sources of vulnerability/stress, but more important stories of resilience and relational growth in the face of adversity.The study authors correctly recommend stress management, relaxation techniques, and self-care for the well spouse/partner.As family and collaborative healthcare advocates, when major health conditions occur, we need to advocate that prevention-oriented couple consultation/psychoeducation and, when appropriate, medically-oriented couple therapy be included in routine care.

Dr. Rolland is internationally recognized for his Family Systems-Illness model, clinical work, and research with families facing serious physical disorders and loss. His book,Families, Illness, and Disability: An Integrative Treatment Model(Basic Books), was nominated for book-of-the-year by the American Medical Writer’s Association. He is currently co-author of a new book, Individuals, Families, and the New Era of Genetics: A Biopsychosocial Perspective(Norton). He has given over 250 national and international presentations on topics related to his work.


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When Family Devotion Leads to Killing: Some Ethical Questions

Posted By Carol Levine and Barry J. Jacobs, Tuesday, April 17, 2012

 

 


Part I:
When Family Devotion Leads to Killing: Some Ethical Questions


by Carol Levine

 

Last October David Brooks, a New York Times columnist, invited readers over the age of 70 to write a brief report about their lives so far as a "gift” to him.

 Among those who responded was Charles Darwin Snelling of Fogelsville, Pa, a small town in the Lehigh Valley, an 81-year-old entrepreneur and recently retired head of the Metropolitan Washington Airports Authority. His long essay, "A Love Story and Redemption,” published online on December 12, 2011, described his successful career and 61-year marriage to his wife Adrienne. With five high-achieving children and 11 grandchildren, two homes, plenty of money, and a variety of interests, they led a "charmed life.”

When Adrienne developed Alzheimer’s disease, six years ago, Snelling made caring for his wife his new life work. He wrote: "We continue to make a life together, living together in the full sense of the word, going about our life, hand in hand, with everyone lending a hand, as though nothing was wrong at all.”

But something was terribly wrong. On March 27, 2012, four months after his essay was published, Snelling killed his wife (no cause of death has been determined) and shot himself. Although rare, this kind of murder-suicide (and that is what it is, despite some attempts to romanticize it), is not unique. Donna Cohen, a researcher at the University of South Florida who studies reported cases like the Snellings, finds that most often it is the elderly husband/caregiver who commits the violence and the wife who is ill.

We will never know what was going on in the Snelling marriage or in Mr. Snelling’s mind. But the incident raises troubling questions. I am not a mental health professional, and I leave that aspect of the commentary to my colleague Barry Jacobs. My views come from my work in medical ethics and my personal and professional experience in family caregiving.

For a start, David Brooks’ response in his column  seems cold and distanced. Rather than expressing some dismay about his own inadvertent role in this drama, he chides Snelling for not "respecting the future.” Brooks says he "bought the arguments that Snelling made in his essay.” How could someone take his "gift” and regift it in this terrible way! He thinks that either Snelling "was so overcome that he lost control of his faculties, or he made a lamentable mistake.”

From my perspective, it was a desperate but entirely thought-out act that can perhaps be explained but not justified legally or ethically. Even an extreme view of autonomy does not include the right to take someone else’s life in addition to one’s own. If he had survived, he should have been charged with a crime, although his status as a pillar of the community might have spared him that indignity. Why is it that so many Americans approve of this kind of violent death but protest withdrawal of treatment from a person in a permanent vegetative state? Why do they refuse to talk about health care proxies and living wills but say that they will rely on a willing relative with pills or a gun?

Some have complained that even to comment on this "family tragedy” violates their privacy. While certainly the surviving family members’ personal privacy should be respected, Snelling took his life story out of the personal realm, first when he wrote his essay and allowed it to be published; and second, when he committed acts of violence that were certain to be reported, investigated, and discussed. These were two very public acts, and he was a man who lived in the public eye.

Nor is this a case of euthanasia, physician-assisted suicide, or that odious phrase "pulling the plug.” The medical community was not involved at all, other than perhaps prescribing medications for Adrienne. (Perhaps some astute clinician might have picked up some clues earlier on.). Refusing unwanted medical treatment is the legal and ethical right of every autonomous person. The facts of this case are not even close to that scenario. There were alternatives. With his resources he could have found a good nursing home with a special dementia program for his wife, visited her as often as he wanted, and found some time for his family and avocations. There is no shame in such a choice, and it should be respected, not criticized as abandonment.

As a person with advanced dementia, Adrienne Snelling did not have the capacity to consent, even if (as seems unlikely), at some point the couple made a verbal pact not to go on living if one partner was terminally ill. Saying, "I wouldn’t want to live without you” is quite different from saying, "Yes, give me that fatal dose of pills today and don’t forget to shoot yourself afterwards.” Nor was this some sort of old-age Romeo and Juliet story. Those who make that connection misremember Shakespeare’s play. In any event, Adrienne was, as far as we know, not imminently dying and not suffering. She might have lived for years in this condition, apparently well cared for (by aides as well as her husband) and happy as long as she could be near him.

And that is probably at the heart of what happened. In rereading Snelling’s essay, I now am struck by the feeling that he was trying to convince himself that this life—a constant caregiver to a person who was and who was no longer his wife—was not only tolerable but good and satisfying. Not a hint of how hard it really was, how diminished he felt, and how difficult it was to imagine the years and years ahead. I have interviewed many caregivers of people with Alzheimer’s; none of them has expressed this kind of total selflessness. The ability to acknowledge one’s losses and limitations is an important asset in surviving caregiving. Friends and family, as well as professionals, should accept and validate these feelings. Perhaps the accolades Snelling received when his essay was published only brought home to him the disjunction between the saintliness ascribed to him and his true feelings.

In the end I feel most deeply for the Snellings’ 11 grandchildren who will live the rest of their lives without the love and pride that is the special contribution of grandparents, but instead with the dark knowledge of violence in their family history.

 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.

 

Barry Jacobs
Part 2:
Narrative Means to Homicidal Ends

by Barry J. Jacobs, PsyD


 

What’s your idea of end-of-life redemption? As medical family therapists, we often try to guide our clients—the dying and their family caregivers—to use the last days, weeks and months of life to express love, complete unfinished business, and make reparations—the better to provide healing and lay the groundwork for successful resolution of grief. But do we regard actively trying to end a loved one’s life as a justifiable means of redemption? I believe that’s the crux of how each of us may view the Snelling case.

In the immediate aftermath of the murder-suicide, the Snelling family was reported to have said that its patriarch had acted "out of deep devotion and profound love.” But I agree with my colleague Carol Levine that we can and should make distinctions between ending a loved one’s death’s-door suffering (say, through removal of life-supporting machinery or administering high doses of morphine under hospice guidance) and killing someone with an as yet irreversible disease who is terminal but still viable and who may or may not be suffering.

I also agree with her that Mr. Snelling’s violent acts were probably not the result of a brain addled by depression but of a mind too taken with itself and with its redemptive mission. As Carol points out, cases like these are rare but not unique. A decade ago, I wrote an essay on a similar case (please see "Instructions to the Jury,” Families, Systems & Health, Vol. 20, 2002, 101-104) in which a husband-caregiver was clearly desperate and severely depressed at the time he put a pillow to the face of his wife of 43 years; he soon afterward was placed in a state psychiatric facility. But there is little of the tone of the tormented depressive in Snelling’s long, meandering essay. Rather it is deliberative and full of gratitude even in its allusions to the grinding work of Alzheimer’s caregiving. We all know about "reaction formation,” Freud’s classic defense mechanism in which people state and do the opposite of how they really feel in order to prevent themselves from being plagued by self-condemnation and anxiety. (Shakespeare’s line from Hamlet-- "The lady doth protest too much, methinks”--captures the same insight.) But there is no telling if Snelling were covering up anger or sadness or anything at all negative with his opaquely self-satisfied essay.

Because that essay was undertaken in response to a prompt to provide a "life report” to New York Times columnist David Brooks, it can be read as a narrative in the clinical sense of noted family therapist Michael White—that is, as a construction or justification for a particular life course. Snelling may even have intended it as explanatory back-story for his children of what he already planned to do. So what do we learn from Charles Darwin Snelling’s narrative? He grew up in a materially rich but emotionally impoverished family in which he was subjected to his prominent father’s unremittingly harsh judgments. He developed into an oppositional, disdainful and willful young man who irritated authority figures but still possessed something of his father’s intelligence and determination. Under the nurturing influence of his wife, he softened somewhat but was still known to their 5 children as a curmudgeon. Then his wife became demented. Others didn’t think he had the capacity for nurturance himself to care for her, but he was determined to prove them wrong. He also saw this as an opportunity to redeem himself—to give back to her some of the love he’d received from her.

It made for a nice story in the Times. But, in my opinion, the postscript to this story reveals that Snelling was not redeemed from his upbringing. We know that childhood neglect often produces narcissistic adults —people of shining public facades but with interior lives marked by feelings of inadequacy, despair and resentment. I consider his writing of an essay for national publication to be a grand-standing effort to make a positive impression and garner prominence. I see in his acts of murder and suicide an application of the harshness, bleakness and willfulness he harbored within. These were sharply negative edges to him that his wife had long blunted until she wasn’t competent enough to have that influence on him any longer. Then he was psychologically on his own. In seeking death, Snelling found the severest form of deliverance for himself and, more especially, for her.

Dr Jacobs is the Director of Behavioral Sciences at the Crozer-Keystone Family Medicine Residency in Springfield, PA.  He has written broadly on family and caregiver issues, including the book, The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent

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Moving from the "Unexpected Visitor" to the "Curbside Consult"

Posted By Cassidy Freitas, MA, MFTI, Tuesday, April 10, 2012
There is a knock at the door. An unexpected visitor has shown up at your doorstep and you already have guests. You are really wishing they would have called ahead of time, but alas, here they are. This unexpected visit is from someone who is important to you, a relationship that you would like to maintain. You are having an important and private conversation though with the guests you are already hosting, and must decide how to balance these two important relationships that are inconveniently colliding. Now imagine that your home is a primary care setting, the unexpected visitor is a physician in need of your consult, and your present guests are a couple you are seeing in therapy. In a nutshell, this has been a common experience for me as a "co-located” therapist. Let me provide a real life example.

My intake becomes quiet and exhales as he looks down at the tissue he has been nervously shredding into little bits and pieces. His body language changes and I sense him trying to formulate the words he is about to say when there is a knock. He tenses up as we both look at the door, and the moment for him to speak quickly fades away. I excuse myself as I open the door and see a look on my colleague's face that I know all to well. My colleague is a resident physician in our clinic, and the look on her face is "Help."

I turn back to my patient and explain to him that we are experiencing one of those special circumstances where I must make myself available. I step into my colleague’s office and she shares a quick summary of a patient she is currently treating, a new mom being seen with her husband who had become tearful during their visit and expressed some suicidal thoughts. My colleague is concerned and is hoping I can provide some consult on how to effectively and efficiently assess for postpartum mood disorders and this patient's safety. After some thought and a few brief assessment questions, I make the clinical decision to join my colleague in her visit with this patient. I am already feeling uncomfortable about leaving my patient at such a vulnerable moment, but in an effort to be collaborative, these are the clinical judgments that need to be made.

These interactions between behavioral health clinicians (BHCs) and physicians are an integral and special piece of collaborative care. I share the above scenario because it reflects the challenges I had faced in a "co-located” primary care setting. While Hunter and colleagues (2009) reinforce that physicians are more likely to use a BHC who is responsive and easily accessible, and that BHCs working within the primary care setting must make themselves available at all times, my above scenario is not the ideal.

Cassidy Freitas
Constructive, supportive, didactic, opportunistic, and at times inconvenient. For me, all of these words described my experience with the unexpected knock on my door.
 The beauty of co-location is that we as BHCs are available to physicians when needed, and that our presence contributes to the care of the whole person. Specifically, I believe that Medical Family Therapists are particularly well-suited for this position because our training emphasizes two content areas that are underdeveloped within many healthcare environments, 1) a systemic relational perspective of illness and the illness experience, and 2) the inclusion of the relational system around the patient.

While co-location is definitely heading in the right direction, it is clinically not the perfect scenario. At the UCSD Department of Family and Preventive Medicine we are moving in the direction of many other clinics by utilizinga system in which "floating” therapists are available to the physicians when these consults are desired. Our new clinic system, coined T-CARE, follows the mission of the Primary Care Behavioral Health model in that it provides educational and systemic changes that improve the primary care system’s ability to provide care (Robinson & Reiter, 2006).

Constructive, supportive, didactic, opportunistic, and at times inconvenient. For me, all of these words described my experience with the unexpected knock on my door. As a "co-located” BHC I was constantly doing what I could to balance the needs of my patients, the physicians, and the physician’s patients that were driving these unexpected consults. While our clinic moves from co-location to collaborative integration, I am becoming more aware of the marked distinctions that exist between these two models. The exchanges and consults that are so central to collaborative care are still occurring, but the unexpected visitor is no longer knocking on my door when the circumstance is clinically inopportune.

Above all, I believe that these exchanges have allowed me to build key relationships with the primary care staff in my clinic (convenient or not), and in the end, I wholeheartedly believe that these connections and interactions are at the heart of collaborative care.

Now I must ask, what has your experience been of the curbside consult? How do these interactions take place at your clinic? And have you ever had to make a tough clinical decision such as the one I described above?

 

References

Hunter, C.L., Goodie, J. L., Oordt, M.S., & Dobmeyer, A.C. (2009). Building an Integrated Primary Care Service. Integrated behavioral health in primary care: Step-by-step guidance for assessment and intervention (pp. 11-20). Washington, DC: American Psychological Association.

Robinson, P. & Reiter, J. (2006). A mission and a job description. In 1st edition, Behavioral consultation and primary care: A guide to integrating services (pp. 29-58). New York: Springer-Verlag.

 

Cassidy Freitas is an MFT Intern practicing at the UCSD Department of Family and Preventive Medicine. She is a recent graduate from the University of San Diego, and is in the process of pursuing MFT doctoral programs.

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Seaburn comments...

Posted By David Seaburn, Wednesday, April 4, 2012

I read the AARP document with great interest since it so closely states the position of Med Family Therapy as a discipline. Even more impressive that it comes from one of the most powerful political organizations in the country. If AARP can't make a change in this area, then no one can. It is clearly important for CFHA to make alliances with this organization.

I must add, though, that it is interesting that it has taken so long for AARP to officially take this position since we have known for decades the role that family plays in the lives of older adults. I understand the historic difficulty involved in convincing insurers, policy-makers and most providers that involvement of family is often integral to good and effective care and not just a nice thing to do when time allows. But it seems like an obvious and critical postion for an organization like AARP to take.  I am pleased that they have finally done so.

The road ahead for Med FTs is still a challenging one. I think that the political/cultural wars over individuality vs. mutuality, pulling onself up by the bootstraps vs. social safety networks has created an atmosphere in which the idea of collaboration and working together is not prized in the way it was been in the not-to-distant past.

It is incumbent upon Med FTs and others to press the argument that such divisions in healthcare make little or no sense. Instead we must argue for both individual autonomy and interpersonal responsibility. We are, afterall, persons because of our connections with other persons.

 

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A Call for Patient and Family Centered Care

Posted By Daniel Marlowe, Tuesday, April 3, 2012

As healthcare costs continue to increase, the squeeze of providing affordable high quality care continues to be at the forefront of the debate. One possible answer has been to explicitly include family members and social support systems as key players in helping provide care to patients. No longer seen as only a ‘resource,' family members are being looked to as cornerstones in ensuring patients receive the best care possible. This link presents an AARP report entitled Moving Toward Person- and Family-Centered Care, which outlines PFCC in regards to older adults with chronic illness and/or disability.

Something to consider- as the healthcare field continues to place a higher premium on patients' relationships and connection to social supports as a means to defray gaps in care, how might medical family therapy position itself to help this discussion along? After all, as medical family therapists we know the power of these relationships, their effect on our biopsychosocial well-being, and perhaps most importantly, the difficulty many families face in taking on the care of a loved one. Perhaps this call for family involvement is a concurrent call for MedFT involvement as well?

References:

Feinberg, L. (March, 2012). Moving Toward Person- and Family-Centered Care. Retrieved from http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/moving-toward-person-and-family-centered-care-insight-AARP-ppi-ltc.pdf

 

Daniel Marlowe

Dan Marlowe is the co-editor of the Growing MedFT Blog, and the Director of Applied Psychosocial Medicine for the Duke/Southern Regional AHEC Family Medicine Residency Program in Fayetteville, NC. He obtained his MS in Marriage and Family Therapy and PhD in Medical Family Therapy from East Carolina University in Greenville, NC.


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The Knock

Posted By Lisa Tyndall, PhD, Tuesday, March 27, 2012
The sound is a familiar one. I have heard it at my primary care physician’s office, my gynecologist’s office, my pediatrician, the mammographer, and the ultra sound tech room, two quick knocks and then an entrance. Whoever follows that knock brings with them several things. Among those items is usually a sense of respect, knowledge, authority, news, caring, sometimes curing, and always a sense of privilege. They belong there, it is their space and I wait for them to share with me what they know.

So who am I to be on the other side of the door? Could I be a "knocker"?

These are two of the questions that I battled with as I entered into my first integrated care internship. I was told to check the sheets for patient information, go into the room, and introduce myself and my services. But this would require me, very quickly, to become confident in not only my role in the healthcare agency, but also in myself. I would have to be the one on the other side of the door. You know, the one with the "respect, knowledge, authority, news, caring…etc.” Who? Me?
Lisa Tyndall

"So go ahead, knock. Knock respectfully, kindly, and firmly, but knock.

You’ll be amazed at the doors that open."


 As medical family therapists, we have battled for acceptance as a valid and worthy and reimbursable service. Our western culture has long appreciated the seemingly solid science of medicine, but it has shied away from fully endorsing the impact of the psychological, social, and spiritual impact on our physical health. This disparity can leave the burgeoning medical family therapist feeling somewhat timid as he/she enters into a medical context. But this disparity must be overcome and must be overcome within the provider him/herself.

If medical family therapists are going to be successful in a medical context, we must grow in our confidence in ourselves and in the services we offer. While this probably comes naturally to those who have been practicing for longer, in students it may show itself in two ways. It may manifest in an intern with an overly-confident demeanor or an intern who is so hesitant that they think their services are an intrusion into the patient’s "normal visit.” We must learn to strike a balance between confidence in our services and place in the medical setting, while remembering one of the core components of family therapy, humility in what our patients and their families can teach us.

The balance is rooted not only in our belief in what our profession and services have to offer, but also a belief in ourselves. As individual providers, we must work to be as self aware as possible in who we are and any issues that might be hindering our ability to gently assume our place within the medical system. We must believe in ourselves that we can carry out what our mentors and professors have taught us about our profession and role in the healthcare industry. And as is true for so many things in the therapy world, this is isomorphic to the patients and families we work with. As we embrace the value in our work and in ourselves, we will likely impart that belief to our clients and the other providers with whom we collaborate. Perhaps they will learn that they too are valuable.

So go ahead, knock. Knock respectfully, kindly, and firmly, but knock. You’ll be amazed at the doors that open.

 

Lisa Tyndall is employed as the Clinic Director for the East Carolina University (ECU)Family Therapy Clinic in Greenville, NC. She has her license in Marriage and Family Therapy, and received her doctorate in Medical Family Therapy where herdissertation research focused on developing a consensus definition of MedFT. She is the beaming mother of two fantastic young boys and adoring wife to her husband, Richard, of almost 13 years.

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Growing the Collaborative Network...the "Old-Fashioned" Way (Well, OK, Not by Telegraph...)

Posted By Julia B. Sayre, MS, LMFT, Tuesday, March 20, 2012

I've just placed a call to a family practitioner, and faxed the release. I notice I'm feeling expectation, curiosity and a strange sense of girding for possible disappointment. I've never worked with this doctor or this practice before. Though rare, there is the occasional practitioner who just does not call back. Collaboration still, at times, feels like a bandwagon for which I'm extending invitations.

Success! The physician a) calls back within about an hour and b) I am able to answer the phone! I briefly summarize how I know our mutual client/patient (Pient? Clatient?), ask for confirmation of the medication dosage and both ask for and impart information regarding reactions to the medication. I am able to report that, based on a recent session with the patient's spouse, the medication's presumed effects garnered a glowing report: she feels better, as reflected in her reports to and interactions with her spouse. The doctor notes this, and comments that the patient never returned for a medication follow-up appointment. Note to self: This doctor does ask patients for follow-ups – my kind of practitioner! I offer to address the need for a follow-up visit to the doctor with our client when she and her spouse come to see me next week. I also ask about a medical condition the client reported – known to have a side effect of depression – and am able to update the doctor about how the client is doing relative to those symptoms: Data for the doctor.

"That went well!” I'm thinking, and then, since I'm sharing this experience, "How so?” It reduces to two major factors: the richness afforded by telephone communication combined with the availability – and good scheduling luck – that enabled prompt exchange of information.

Julia B Sayre

We could conspire to bring me into the 21st century – EXCEPT: there is a difference in communication substance when we write to our medical colleagues compared to speaking with each other. I could email questions and updates. That's fairly straightforward, but lacks the richness of data that occurs when two people converse.

 Phone calls and phone tag or email, oh my!

No question, email could expedite contact with physicians; I know, and I confess: I don't trust that I have what I need to protect client identity, and this keeps me from transmitting via the internet. I am expecting a chorus of suggestions on this (honest, I can't see you rolling your eyes) and welcome every single one, thanking you in advance. We could conspire to bring me into the 21st century – EXCEPT: there is a difference in communication substance when we write to our medical colleagues compared to speaking with each other. I could email questions and updates. That's fairly straightforward, but lacks the richness of data that occurs when two people converse.

I recently checked in with a doctor regarding a new, elderly client of mine about whom I have concerns regarding cognitive functioning. The doctor reported updating three prescriptions in her first appointment, all psychoactive, which our mutual client had just reported to me she was no longer taking, though they had been prescribed for 90 days only three weeks ago. In exactly two minutes, the doctor and I clearly understood each other. Though she had observed her patient as alert the day of her physical exam, she volunteered to do some cognitive screening and carefully inquire about medications at the follow up her patient had not yet scheduled – but that I would encourage the client to seek: A multidisciplinary dance enhancing client care. That is what I hope for: the richer data, that feedback that happens when, as participants in collaborative care, we are able to discuss factors impacting emotions, illness or medication.

Availability

Emailing information eliminates the concern about availability and schedules— though typing takes me longer than talking! I edit, and double-check, and it takes twice as long; so though I've now delivered the written message perfectly, there is no guarantee about the timing of responses to my information and questions – and it may be that the doctor's responses will create follow up questions.

In the above examples, notice the doc and I each were available to the phone when the other called. I happened to be available at the same time she was – a seeming miracle in this day and age. Doctors will often tell their staff, "Just pull me out of an exam room if a colleague calls.” But as a MFT, I don't have that "luxury,” nor do I want it: I personally hold to not interrupting client sessions to answer the telephone, similar to most of my MFT colleagues. Mutual availability is the barrier to direct, interactive communication, but is so worthwhile to getting the richer data and helpful informational exchange that I seek.

Building the Collaborative Care Network One Quick Call at a Time

We all need a rubric: Whether we're requesting information and sharing it via letter, email or telephone with a medical practitioner, we probably have a preferred list of questions. And alternatively, if we're making a referral, it's useful to have a standard presentation: we've seen the client for this long, diagnosis, purpose in referring. Doctors tend to talk in short, purpose-driven sentences, right to the point. We therapists ponder the human condition and wonder about possible outcomes. I've learned to keep it short and sweet, tailor a basic set of questions to the needs of the individual client's situation, focus on the answers so that I can attend to thorough, though brief, follow up questions; this is my compromise to seeking "richer” data by telephone, but following the "all-business” route. The good news is that, if you catch the doctor between your clients, there's a good chance you will get the information you need quickly. They talk fast, and I talk – and listen – as fast as I can!

And final thought: Since I do things by telephone, I almost always offer to send cards, and I ask them to send some in return, once they receive mine. We create networks, we become familiar with each other's treatment philosophies, and we become a community of collaborative care practitioners!

Julia B. Sayre is a licensed MFT, Certified Traumatologist and AAMFT Approved Supervisor practicing in Northern Virginia. Julie holds an avid interest in medical family therapy, supported by a strong belief, steeped from the first days of her clinical training, in the collaborative approach. She received her B.A. from the University of Virginia, her M.S. in Human Development/MFT from Virginia Tech/Falls Church, and maintains ties to VT through the occasional service on a thesis committee, most recently regarding original research in medical family therapy. She also serves on the Board of VAMFT, Virginia's division of the AAMFT, and is a member of ISST-D. She and her spouse form a stepfamily, "whose genogram looks something like a hybrid tree-shrub with a few hanging vines. With really nice flowers.”

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So Now We Don’t Have a Father? One Widowed Parent Answers Tough Questions

Posted By Sonya Jones Dawson, Tuesday, March 13, 2012
My daughter is the typical 7 year-old in that she asks a lot of questions. And there is a lot in her life to question. We had a baby last year and she wants to know how that happens. She saw me go through pregnancy, the changes in my body, and had the waiting experience. She heard his heartbeat more than once and felt him move inside me. Still, at 6 years-old, I imagine it's strange to go through all that only to be brought to the hospital one day and told, "Okay, he's here and have this tiny person just appear. She adores him. He's her best friend. She still has questions about not so much where he came from, but how he got in there. Not a conversation I'm ready to have with a 7 year-old. I told her that God helped her father and I make them. She did see an animal planet special on the subject. It included talk about the egg and sperm. I did let her know that people made babies the same way. That's as far as I've gone.


Then we weren't settled into life with her little brother when her father, whom she loved dearly, and who was sick most of her life died one day while she was at school. He wasn't terminal. I didn't tell her he was dying. I didn't tell her he wasn't. She asked. I just told her that she'd be taken care of no matter what happened.

She was always concerned for his comfort and that has not changed since he died. I think she worries just as much about him as she does about me. I remember taking a significant amount of time letting her know how soft the pillows inside the casket were and how he was wearing his favorite suit. Still death is a huge mystery to anyone who hasn't been there no matter what their age. At the age of 7, there's another whole level as far as an inability to understand the concept.
Sonya Jones Dawson
I sit in wonder as to the inner workings of a child's mind.

"Doesn't he need food?” "No.”


"Is he okay?” "Yes because he's not sick anymore.”


She made him a get well card after he died similar to how she would periodically during his life. I told her he wasn’t sick anymore, but unfortunately that also meant he wasn’t coming back. I asked if she’d like to put the card in the casket, but she declined. Instead we gave the funeral home a bracelet to put on him that she’d given him for Christmas. It was a gold ID bracelet with "DADDY” on it. They put it on his right wrist along with a gold bracelet I had given him for a previous anniversary.

She was able to see him the day before the funeral and checked him over thoroughly while standing guard as others came and went. I looked at her in between greeting visitors and shook my head at the thought of the confusion she must have been feeling. She asked me whatever she wanted to ask though. Mostly she wanted to know why he wasn’t doing various things. "Why isn’t he breathing?” "Why isn’t he talking?” "Why isn’t he moving?” I had to keep saying "People don’t (insert activity) after they die.”

Then it was on to the concept of burial. How do you explain to a 6 year-old that beyond being put in a box, we also have to put her father in a hole in the ground? However a person finds the words that will work is all I can conclude. I found though that explaining it once doesn’t mean the conversation won’t take place again. For Ariana this was hard to accept because her father really valued being clean. He worked and the first thing he always did after work was take a shower. He hated being dirty, and his daily shower was very important to him, especially during the summer months. She looked at him and knew he would never get a bath again. I told her we could not keep him at home anymore because after a person dies they have to be kept in a special place. They need that special bed and the bed has to go into a special box. I explained it was all being done to keep her father safe and clean and that once it was done he would not need another bath. That explanation satisfied her and fortunately for me, it satisfied her all four times we had the conversation since we buried him.

It still took her a while to realize it was permanent. After about 6 months she began to ask me continuously for weeks if he really was going to be gone forever. But I didn't mind. I still look at the door and can’t believe he won’t be back so I can’t imagine how difficult it is for her, so I don’t hesitate to answer her. I mean I hate for her to have to deal with the reality, but I imagine it is better for her than expecting that after a certain length of time he's going to come bouncing through the front door like he did before he died.

I have a friend who lost her husband when their daughter was the same age as my daughter is now. She found out later that the little girl just thought he was going away for a while to get better, that she didn't know when, but thought he'd eventually come home. It was 3 years later she said when the reality set in, and it hit her so hard she started lashing out at friends she'd had since preschool because they still had both of their parents. She said it was so bad she had to change schools. And I've read this is normal, that children grieve in cycles, so I'm still on guard. But with counseling that little girl has blossomed into a beautiful teenager who has helped other girls who have experienced the loss of a parent. I expect she'll help my daughter at some point. And I expect at some point my daughter will be helping others.

As recently as last month, she voiced some concerns. Some were repeats, but still I sit in wonder as to the inner workings of a child's mind.

"Doesn't he need food?” "No.”

"Is he okay?” "Yes because he's not sick anymore.”

"Is he our angel now?” "I'm not sure, but I believe you have always had one or more. (that’s another story). If he's not one of them, I'm sure all the praying he did for us has sent us some.”

"Can he see us?” "If he's one of our angels he can. If not, no.” (And on my angry days I hope not. I get so angry. And I’ve made some changes in my life I know he wouldn’t be happy with and I’ve invested in things he wouldn’t have. But I’ve done what I felt I needed to do to survive and since he died, he doesn’t get a vote).

Then, the conversation got even more interesting.

"Does he still snore in that bed?” To explain the concept of a casket on her level I called it a special bed. "Absolutely not. He isn’t snoring.”

"Oh, is that because he doesn't breathe?” "That’s right.”

"So, is he bored?” "No.”

"Mommy, why did you marry an old man?” "Huh? He was 45. That's not old.”

"Well, only old people die right?” "Um…no honey. Anyone can. It's sad, but anyone can no matter how old they are.”

I shake my head at her having to deal with such harsh realities at this age. I worry it will make her grow up too quickly. I remember the day it happened. I remember thinking of telling everyone I had to tell, how it was going to hurt them. For her I felt I was going to take part of her innocence. My heart began to beat faster when Ariana's Godmother left our house to bring her back home. And it progressed to racing when they returned and Ariana came bounding up the steps to our front door. I was about to turn her world upside down. How could I do this?


I didn’t wait. As soon as she was inside the door, I took her hand and walked to her father’s chair. I sat and held her close to me. We had talked about death when she asked about my grandfather. He died when she was two years-old, but his picture is up in our house. So, I went from that. "Ariana, do you remember when I told you that sometimes people are hurt or they get sick and the doctors can’t fix them? "Yes.” "We talked about how when that happens the person goes away to be with Jesus if they believe in Him right?” "Yes.” "Well, honey, daddy went to be with Jesus today.”

She was the calmest person I talked to that day. But her quiet tears tore through my heart in those moments and still do. And I'll never forget her words...

"So, now we don't have a father?”

But I continue to be inspired by how she handles not having a father. And I pray that God continues to equip me as He has been faithful to all the way to now, to handle my children not having a father. It isn’t easy. The truth is I have never been more tired in my life. But I’ve also never been more grateful. My children are beautiful and the greatest things my husband and I accomplished together. I’m sorry he doesn’t get to see it, but my appreciation to him for giving them to me, outweighs the sorrow enough that I keep putting one foot in front of the other for him, for our children and for me.

Sonya Jones Dawson is a Clinical Data Analyst in North Carolina. Thomas and Sonya were married for 10 years. During that time Sonya cared for Thomas as he courageously battled the effects of Lung disease. He had bouts with lung infections, heart disease, steroid induced osteoporosis and diabetes that resulted in intermittent periods of incapacitation ranging from two weeks to 7 months long. Sonya joined the Well Spouse Association in January 2008 shortly after Thomas' diabetes diagnosis.

Sonya and Thomas had two children from their marriage, and two children from Thomas' previous marriage. On March 9, 2010, two months after the birth of their second child, Sonya returned home to find Thomas had died in his sleep while she was at work. Sonya and their two young children continue to live in the family home in North Carolina. Their daughter Ariana is now eight years-old and their son Elijah is now two years-old. She continues to be an active supporting member of the Well Spouse Association.

This post was re-printed with permission from the Wellspouse Association, which "advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner.” Please follow this link to learn about this wonderful organization.

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Dejected Views on Family Hating

Posted By Barry J Jacobs PsyD, Tuesday, March 6, 2012


Dejected Views
on Family-Hating


Barry J. Jacobs



 The surreptitious eye-roll is bearable. The low groan is regrettable but not worth reproaching. But what irks me most about the occasional reactions of my family medicine residents to their patients’ relatives is the smug, dismissive, professionally rendered character assassination, complete with technical terminology. "The spouse is in denial,” they point out to their fellow inpatient team members when an overwhelmed and grieving husband or wife is unwilling to change a patient’s code status. "The daughters are being manipulative,” they observe about adult children who are urging their mother to resist physicians’ recommendations to undergo surgery or take a new medication. "They’re over-stepping boundaries,” they claim about family members who call them repeatedly or accost them with concerns in the hospital or office hallway.

It’s not that other healthcare professionals are substantively more family-friendly. For many of my mental health colleagues, hate of (or at least discomfort with) families is a many splendored thing. They focus on individual dynamics and prerogatives, invoking the delicateness of the therapeutic alliance or the sanctity of confidentiality as justifications for eschewing family contact. They cringe at the prospect of family meetings. They regard family systems thinking as a relic of the ‘60s, unsupported by current research or modern expediency.

I’m incredulous at these attitudes; I take them personally. From my teenage years caring for my father with brain cancer to my middle-aged years caring for my aging mother and demented step-father, I know in my gut how families affect patients’ clinical outcomes and how patients’ illnesses affect family caregivers. Others, clearly, don’t share the same visceral conviction. So what do I make of the widespread phenomenon of family-hating? Here are some over-the-top theories:

We operate in evidence-reinforced comfort zones: Much of healthcare practice and consequently research is focused on individual patients. In an era when clinicians are reminded at every turn to treat according to evidence-based principles, family-centered practices—lacking the same degree of empirical support—therefore seems the riskier clinical gamble. This is compounded by the fact that many healthcare professionals do not receive much training in the nuts-and-bolts of working with patients’ family members—e.g., running family meetings, addressing family conflicts. The seemingly prudent and comfortable treatment approach is centered on patients, leaving family members in the wings.

We are rats in templated, encoded mazes: Medical care, especially primary care, is being increasingly shaped by the clinical pathways that are the basis for the templates of our electronic medical records. By clicking through those templates, physicians not only have the assurance of following the so-called highest standards of care but are also working toward completing their progress notes for medical sessions as quickly as possible. It should come as no surprise that those EMR templates reflect bias toward individually-focused treatments. Family-centered healthcare is off-the-templates.

At the same time, clinicians are under enormous pressure to maximize reimbursement for healthcare services. The billing codes—aka CPT codes—they use have a powerful effect on practice. CPT codes for individually-oriented treatments are reimbursed by insurance companies. CPT codes for meeting with patients’ family members are generally not. We follow the money and avoid the family members.

Beaten and bedraggled, we cling to our authority: I don’t need to tell you that every year healthcare providers are worked harder, blamed more for rising healthcare costs, and disparaged more frequently by angry patients and aggressive lawyers. Evoking Rodney Dangerfield, all we want is a little respect. Now comes the dawning age of the patient-centered medical home with its emphasis on team-based care and who wants a place at the decision-making table as partners in care? Family caregivers do. (For example, see this recent AARP Public Policy Institute report). I think it’s tough for us to give up some of our remaining power to family members. When I hear professionals complain that patients’ family members somehow obstruct the treatment plans of the healthcare team, I infer that they don’t want their scant authority challenged any more than it already has been.

We are all adolescents at heart: Many of us give lip service to the importance of family members to patients’ care. But in our own lives, in our heart of hearts, we feel ambivalently about families. We want their support but don’t want them to encroach on the individual’s rights and independence. It reminds me a little of the sentiment captured in the title of the 2002 book on teenager psychology, Get Out of My Life, but First Could You Drive Me and Cheryl to the Mall. We want family members to drive our patients to our offices but then don’t make a fuss in the exam rooms. We want them to help our patients adhere to our treatment plans but not have input into those plans. That’s not family-centered care. That’s not even respectful of what family members know and have to offer. It marginalizes families. It’s reflexively oppositional and hateful.

For more on this general subject, check out the seminal article, "The Trouble withFamilies: Toward an Ethic of Accommodation” by Carol Levine and Connie Zuckerman in the Annals of Internal Medicine, 1999, vol. 130, pages 148-152.

Also please see "Interacting with Patients’ Family Members During the Office Visit” in the Oct. 1, 2011 issue of American Family Physician; it’s a tepid, timid approach to incorporating family members into primary care but at least represents some effort to do so.

 



I Beg to Differ

David B. Seaburn

 

I beg to differ with my good friend Barry Jacobs’ blog posting entitled, "Dejected View on Family-Hating.” Not only is he (uncharacteristically) off-base, but he may not even be on the playing field.

He notes that family-hating is rampant in the medical field as well as in most mental health disciplines. While I don’t espouse family-hatred, I doubt that any well-trained family-oriented mental health professional isn’t at least ambivalent about families from time to time. They are messy and confusing and inconsistent and wonderfully Resilient in their efforts to get us to respect their integrity. Non-family-oriented healthcare professionals are not the only ones to unfairly label families. In moments of frustration, I have considered whether "borderline” might be an apt relational diagnosis, especially when I don’t know what to do with a family.

Which brings me back to Jacobs’ criticism of residents. If as an experienced family therapist (35 years), I, at times, label and very nearly hate a family, what can be expected of residents. Remember---these are medical professionals who have been trained almost exclusively in a paradigm that focuses on the life and death of an individual patient; who have been acculturated to think reductionistically ("Let’s find the single cause of this patient’s symptoms”); who then enter a healthcare system that mitigates against inclusion of families due to time (see what it’s like to care for four or more patients per hour), diagnoses and healthcare reimbursement. If that were my professional background, my professional culture, I would run the other way when I saw a complex, demanding, needy family coming my way, as well.

I was a residency educator for almost twenty years. Early in my tenure I learned that I was a visitor in a different culture and, as such, I needed to enter that culture with respect and an eye to learning as much as I could to be of value. At first I thought I needed to convert the heathens to a family systems paradigm. If they could only become like me! Soon I realized that that wasn’t what was needed. More than anything else, residents needed help with their most difficult patients. As a family systems professional, my help with challenging patients often (but not always) included involvement of the family as a resource to the resident or as an important source for understanding the patient’s problems. Once residents saw that family could be integral to care and that involving family in challenging patient situations made their lives easier, residents often caught the family system’s bug. For me the lesson was---Don’t preach family-systems, just do it. Making it work in the exam room is the best evidenced-based example you can provide.

The challenge for family-oriented residency educators is to be comfortable and creative taking a one down position (yes, even after all these years!) in a system that is slow to accept differences, let alone change. That means wielding power and influence differently, if, at times, not equally. Becoming a recalcitrant adolescent ourselves is not the answer. Instead, we must recognize that as a maturing member of the medical education family, family-oriented healthcare educators must demonstrate the capacity to be systems-oriented in our clinical, research, educational, administrative and policy-making endeavors. We must leave "evidence” of who we are everywhere we go. I think that the better angels of Dr. Jacobs’ nature recognize this.


Barry Jacobs
Dave Seaburn
Barry Jacobs and Dave Seaburn are family medicine educators and long-term collaborators. Barry is the Director of Behavioral Sciences at the Crozer-Keystone Family Medicine Residency in Springfield, PA and the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent. Dave recently retired from a distinguished career as the behavioral science faculty in the University of Rochester Family Medicine Residency and has taken to writing novels, including Charlie No Face.

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