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A child’s hospitalization is a family affair – and why caring for families is good for a hospital’s health

Posted By Nicole Rubin, Deron Ferguson, Linda Franck, Wednesday, July 29, 2015

                                           

Finding a place to stay can be a major stressor for families traveling long distances for their child’s hospitalization. When the necessary specialist pediatric medical care is not available near home, uncertainties about transportation and accommodation become sources of both emotional and financial stress.3 Hospitals can play a greater role in understanding each family’s accommodation needs, before their hospital stay when possible, and can work to ensure these needs are adequately met upon arrival so that the family is able to focus more fully on the child and their care.

 

Families want to stay together when their child is hospitalized and believe it helps improve their child’s recovery.  Families of seriously ill children want to be with their child as he/she receives treatment and do not want to be separated from spouses, partners and other children for extended periods of time. In the first in a series of studies examining the questions of accommodation and proximity, we found that families who stayed together for at least some of their child’s hospitalization believed more strongly that their presence nearby improved their child’s recovery. They also believed that RMH helped their family to stay together. Cultural differences were evident, with Hispanic families believing more strongly that RMH shortened their child’s hospital stay.4

 

Nearby purpose-built accommodation provides families with much-needed rest while enabling them to stay close to their hospitalized child.  In another study5, we measured sleep quantity and quality in parents who stayed in a RMH and those who slept at the child’s bedside. We found that parents who slept in the child’s hospital room had poorer sleep (more awakenings and feeling less rested after a night’s sleep) than parents who slept in the RMH.  Nearby family accommodation may facilitate parent-child proximity during a child’s hospitalization while also providing parents with opportunities for essential sleep.

 

Families who stay in nearby purpose-built accommodation report more positive patient experiences.  In our most recent study of 10 hospitals that provide pediatric services across the United States6, the most common accommodation for pediatric inpatient families was at the bedside (76.8%) and for neonatal intensive care families was in their own home or the home of a relative or friend (47.2%).  Yet those families who stayed in a RMH reported significantly higher overall experience scores for their child’s hospital stay, were more likely to recommend the hospital and were more likely to view their accommodation as being helpful to staying involved in their child’s care than parents who stayed at the child’s bedside or their own homes. This study highlights how nearby accommodation that includes family peer-to-peer and other support services helped improve the quality of the hospital experience for these families.

 

Hospital leaders worldwide understand that meeting the accommodation needs of families is an important part of enabling family-centered care.  While hospitals are appropriately focused on providing excellent medical care to those they serve, an international survey of hospital leaders also demonstrates an understanding that caring for the whole family allows better care for pediatric patients.7  Hospital leaders reported positive opinions about the contributions of their RMH affiliation to their ability to serve seriously-ill children and their families. This included such important outcomes as increasing family integrity and family participation in care decisions; and decreasing psychosocial stress and hospital social work resource burdens associated with lodging, food, transportation and sibling support.

 

What is it about the family accommodation program that makes such a positive impact on families and their hospital stay overall?  It is not just proximity, lodging or a reduced financial burden.  The program is designed to provide comfort, care and support to families through a shared experience with other families facing similar challenges, through activities and meals designed to provide a break from the stresses of daily caregiving, and through a comfortable and uninterrupted night’s sleep.

 

Future research is needed to understand what can be done for all families with hospitalized children.  It is important that further research aim to understand how to better support families who are not traveling long distances to help provide more of the benefits that seem to be associated with an RMH stay.  Psychosocial support, a community of families facing similar challenges and forced separation from the chores and expectations when one is at home may be important factors to consider.

 

References

 1. Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM. Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal 2012;16(2):297-305.

2. Kuhlthau KA, Bloom S, VanCleave J, Knapp AA, et al. Evidence for family-centered care for children with special health care needs: A systematic review.  Academic Pediatrics 2011; 11(2):136-143.

3.  Daniel G, Wakefield CE, Ryan B, Fleming CAK, Levett N, Cohn RJ. Accommodation in pediatric oncology: Parental experiences, preferences and unmet needs. Rural and Remote Health 2013;13(2):2005.

4.  Franck LS, Gay CL, Rubin N. Accommodating families during a child's hospital stay: Implications for family experience and perceptions of outcomes. Families, Systems and Health. 2013;31(3):294-306.

5.  Franck LS, Wray J, Gay C, Dearmun AK, Alsberge I, Lee KA. Where do parents sleep best when children are hospitalized? A pilot comparison study. Behavor Sleep Med 2014;12:307-316.

6.  Franck LS, Ferguson D, Fryda S and Rubin N.  The child and family experience: Is it influenced by family Accommodation?  Medical Care Research and Review 2015 [Epub ahead of print] pii:1077558715579667

7.  Lantz PM, Rubin N, Mauery DR. Hospital leadership perspectives on the contributions of Ronald McDonald Houses: Results from an international survey. Journal of Health Organization and Management 2015;29(3):3881-392.


  Nicole Rubin, MHSA, is the Founder and Principal of Impact Solutions, LLC, where she works with nonprofits on strategic planning and assessing impact.  She formerly served in a variety of leadership roles for organizations such as Ronald McDonald House Charities of Southern California, Susan G. Komen for the Cure Greater New York City Affiliate and Methodist Health Care System in Houston, Texas. 
 

Deron Ferguson, PhD, is the Director of Analytics at Qualis Health.  Qualis Health is one of the nation's leading population health management organizations.  He most recently served as Senior Director of Research and Analytics for the National Research Corporation.

 

Dr. Linda S Franck, RN, PhD is Professor and Jack & Elaine Koehn Endowed Chair in Pediatric Nursing at the University of California San Francisco School of Nursing. Her research program includes investigation of patient and family experience of health care and engagement of parents and children as partners in pain management and in research to improve quality of care and quality of life.

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Teaching Couples How to Flourish -- for Health's Sake

Posted By Jana Staton, Friday, July 17, 2015


Are patients with chronic illness motivated to learn how to protect their relationships as a benefit to their health and well-being? Can clinicians teach what we know about the complex connections between health and our intimate relationships in a practical way? Those questions led me to propose a six-session class, "Flourishing with Love and Health," for active seniors through the University of Montana Osher Lifelong Learning Institute (MOLLI) in Missoula.   


The class drew on the best recent research supporting the health benefits of positive relationship interactions and the damage to health and well-being that can occur with negative ones, which Theodora Ooms and I described  in a Families & Health blog post, and have written about extensively for the National Healthy Marriage Resource Center. The class included evidence-based strategies for maintaining couple well-being under stress, and for working as a couple team with health providers.

 

Here's the outline of the six 90-minute sessions.

·         Intimate Couple Relationships in the Last Phase of Life: 21st Century Couple Lifespans

·         Love on the Brain: Neuroscience Findings on Human Love and Attachment

·         Evidence for the Health Dangers of Relationship Discord, Negativity and Withdrawal

·         Intimacy and Touch: Does it Matter Now? What the Science Says

·         Managing Your Health as a Couple Team, Part I

·         The Couple Team, Part II: What to Do and What Not to Do

 

The participants who signed up for this class were active seniors ranging in age from late 50's to 85.  There were 4 couples (the 84-year old pair sat right up front so they could hear) and 17 single partners, the "well" caregiving spouses. They brought to the class their current experience with various cancers, heart disease, Parkinson's, and dementia. One individual was in a long-standing same-sex partnership, and there was one widower beginning to envision a new relationship for himself after his wife's death from cancer. None were Pollyannaish about what lies ahead.

 

After the first session, a woman in her early 60's, married some 30 years, came up and said:


"You know, I always imagined that someday I would be moving to New Mexico with some girlfriends, to live in an adobe casita where we could write, paint, hike (long pause) -- that's not going to happen, is it?"

 

No, it's not likely. She's in the generation already experiencing the demographic shift from "couple mortality" by age 70, to "couples aging together" well into their 80's and 90's.1 Her husband didn't come with her. But I imagine that like many men in Western Montana, he may have his own fantasy about how his life will play out:


"Someday I'll be out on Rock Creek, the salmon flies will be hatching, and I'll cast one more time into that big pool --and suddenly drop dead of a heart attack, right in the best blue-ribbon trout stream in America."    

        

That's not likely to happen either.

 

As this woman realized, she's in the growing generation of still-coupled patients in their 70's and 80's They are the accessible and motivated ones we can and should be reaching and educating now. They want answers to the following questions:  How do couple interactions affect physical health?  What kinds of behaviors cause harm?   What can we do to protect our relationship from the stresses of illness and treatment?  Is it worth the investment of our time and energy?

 

When I started looking for 'what works,' I found far more useful, practical strategies in peer-reviewed research journals than I expected -- encouragement for those of us who want to rely on evidence-based interventions.  RCT studies provide specific descriptions of what to say and not say to partners, in order to encourage adherence to medical regimens. There are specific communication strategies and behaviors that strongly correlate with health consequences (negative and positive) in major national surveys such as the National Social Life, Health and Aging Project (NHSAP)2-4, and the MidLife in the US (MIDUS)5.  I found couple-focused strategies for planning doctor visits beforehand, and excellent new video tutorials for how to ask questions and to become active participants as a team..

 

Participants said that understanding the research gave them the confidence to talk with health care providers about what matters as a team and they valued the research basis for practical tips. They liked the new neuroscience research on how the body and mind are inextricably linked. They were motivated by understanding Kiecolt-Glaser's research on the 'cascade' from relationship conflict & distress to chronic physiological arousal, to lowered immune system response, to injury or infection, to higher inflammatory response6-7.  Everyone appreciated Session 4, about why maintaining an intimate love life is good for both partners' health, why the oxytocin release from touch and intimacy is so critical to well-being, and how to "enlarge your repertoire" when performance falters (Yes, I really did talk about this). 

 

By the 5th session, class participants were willing to write down and share their own stories of successes and failures in managing their health care encounters. So we developed our own "Best Practices" list of everyday activities and strategies to protect relationships from the damaging effects of serious/terminal illness, to bolster the health of both couples, and to maintain couple well-being even in the face of a terminal diagnosis. And I learned that there's real payoff in teaching just one partner how to protect a relationship and avoid damaging interactions (remember, 17 of the participants were there without partners).  A common response on the evaluations was  'I learned so much."  So did I, by having to research and develop this class. 

 

I want to encourage clinicians working in medical and health care systems and those training new clinicians for health care practice not to wait for the health policy makers to understand what we already know about the importance of intimate relationships for older patients.  Can we go beyond crisis interventions, assessments and counseling to share what is already known in seminars, classes or in individual consultations?  I believe we can teach the specific communication skills needed to discuss illness and work together as a health care team, to be advocates for each other's health, to block negativity and discord, and to protect their relationship even as severe health conditions are encountered. As health systems move toward paying for outcomes rather than treatments, patient education will only increase its value, particularly by improving adherence rates.  The health benefits of increasing adherence to medical regimens is a good issue to start with8, but we don't need to stop there.

 

Months after this class ended, I encountered the wife of a local health provider (he and his wife were one of the 4 couples).  He's still active while struggling with advancing Parkinson's.  Her face just glowed as she described how much better their most recent physician visit went. "It was SO different!  I knew how to ask questions, knew I needed to speak up and be involved. And my husband and I were able to talk about it ahead of time, so he didn't get upset with me." (This from someone who's already had years of coping with Parkinson's).  She said their doctor (a neurologist specializing in Parkinson's) was surprised at first, but seemed pleased, and the result was that he spent more time talking with them.


 

Jana Staton, has her doctorate in counseling psychology, and currently works as a marriage and family therapist and couples educator in Montana. She is author of A Few Months to Live: Different Paths to Life’s End, with Roger Shuy & Ira Byock. If there are clinicians offering similar interventions or training family therapists for health care settings, who are interested in, or already incorporating this perspective into curriculum, she would be glad to share the "Flourishing" syllabus, research basis and practical tips. You can contact her directly at jstaton@montana.com

 

References

1. Jacobson, L.A., Kent, M., Lee, M., & Mather, M.  2011.  America's Aging Population. Population Bulletin. Wash, DC: Population Reference Bureau, Vol. 66, No. 1. http://www.prb.org/pdf11/aging-in-america.pdf         

2. Hui, L. & Waite, L. 2014.  Bad Marriage, Broken Heart: Age and Gender Differences in the Link between Marital Quality and Cardiovascular Risks among Older Adults.  Journal of Health and Social Behavior, 55(4) 403–423. DOI: 10.1177/0022146514556893.  http://hsb.sagepub.com/content/55/4/403.abstract

3. Iveniuk, J., Waite, L.J., Laumann, E., McClintock, M.K., Tiedt, A D. 2014. Marital conflict in older couples: Positivity, personality, and health.  Journal of Marriage and Family, 76, 130–144.  DOI: 10.1111/jomf.12085. http://onlinelibrary.wiley.com/doi/10.1111/jomf.12085/abstract

4. Wong, J. & Waite, L. 2015.  Marriage, social networks, and health at older ages. Population Ageing, 8, 7-25. DOI 10,.1007/s12062-014-9110-y. http://link.springer.com/article/10.1007/s12062-014-9110-y#page-1

 5. Bookwala, J. 2005.  The role of marital quality in physical health in the mature years.  Journal of Aging and Health, Vol. 17, No. 1, 85-104. DOI: 10.1177/0898264304272794. http://www.midus.wisc.edu/findings/pdfs/129.pdf

6. Kiecolt-Glaser, J.K. & Newton, T.L. 2001.  Marriage and health: His and hers?  Psychological Bulletin, 127, 4, 472-503.  DOI: 10.I037//0033-2909.127.4.472.  http://pni.osumc.edu/KG%20Publications%20(pdf)/142.pdf

7. Kiecolt-Glaser, J.K. et al, 2005. Hostile marital interactions, proinflammatory cytokine production, and wound healing. Archives of General Psychiatry, 62:1377-1384. http://pni.osumc.edu/KG%20Publications%20%28pdf%29/171.pdf

8. DiMatteo, M.R. 2004. Social support and patient adherence to medical treatment: A meta-analysis. 2004.  Health Psychology, 23, 207–218. DOI: 10.1037/0278-6133.23.2.207 http://www.robindimatteo.com/uploads/3/8/3/4/38344023/meta_social_support_.pdf

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Cyberbullying

Posted By Amy Seery, Tuesday, June 23, 2015

 

Cyberbullying is a topic that I became interested in back in 2011 as a pediatric resident. Reports of suicides by children due to online bullying were starting to pop up in the media with increasing frequency, yet no one was sure how to respond. Our society was again being confronted with the harsh reality that sometimes the most amazing technology could be used to cause devastating harm. Over the years though, society rallied and addressed this issue in some remarkable ways. By using both knowledge and a proactive approach, healthcare providers can make a meaningful difference in cyberbullying.

Cyberbullying is defined as when a child or adolescent is tormented, threatened, harassed, humiliated, embarrassed or otherwise targeted by another child or adolescent using the Internet, other digital technologies and/or mobile phones. It is very important to note that these interactions are occurring between two minors. If a person over the age of 18 years is involved, this persecution is now called "cyberharassment” or "cyberstalking” which is illegal. Offenders can be punished by law in every state. As the legal system has growing exposure to cyberbullying, the new trend is to allow the victim to define when harassment is occurring. If someone feels threatened or tormented then bullying is occurring, regardless of the other child’s intent.

Historically adults responded to cyberbullying much the same way we advise a child to handle school yard bullying. "If you just ignore them, they will go away”. Sadly this was terrible counsel. Unlike a school yard encounter, when one is using digital media there are no non-verbal cues to help us understand the intent of the words being hurdled at us. All of us have had a misunderstood text message: "was that meant to be playful, sarcastic, or just plain rude?” For children who are learning socialization skills this task is even more overwhelming. Additionally, today’s children are expected to be competent digital citizens in their personal, and eventually, professional lives. Ignoring slanderous comments that will live forever on the internet is not an appropriate option.

 

Foremost, children should be taught how to use digital media in a safe and courteous manner from their first interactions. While we encourage children to never post personal information about themselves online, we should also explain their words and actions now could affect future opportunities. When they load that post or photo, what will their grandmother think? What about their pastor, or future employer? Is the post even necessary if it is unkind or shaming of others? (This goes for frustrated parents as well.)

Parents should be encouraged to "snoop”. Just as children are not allowed to have secret friends, go on play-dates unsupervised or to watch adult-rated content alone, they should not be allowed to have secret online lives. I encourage the use of "digital media agreements” as a kind of contract between parent and child. This way children know exactly what kind of behavior is expected while they are online or using a cellphone. Children will also know when to get their parents involved if they are being cyberbullied. These media agreements can be found online at commonsensemedia.org. This site also helpfully rates movies, video games, TV shows, web pages, etc.

When cyberbullying is discovered, it is crucial to not respond in kind- whether one is a child or an adult. Saving the conversation is important. Screenshots are the best evidence, but even recording the date/time of and an explanation of the encounter can be helpful to authorities.  If the bullying is still relatively mild it is acceptable to call out the poor behavior, though one should never attack the person.  It is appropriate to say, "This post is mean and hurtful. Please remove it.” It is inappropriate to say, "I think you’re an annoying jerk.” The internet is rife with conversations that have dissolved into hate-filled rants of personal attacks. This trollish behavior should be named for what it is and not be tolerated by adults.

 

We should be role models to children in our own actions while online. Children should be encouraged to report cyberbullying immediately to an adult, even if they are only witnessing it. Parents should also note that only 9% of children are purely a victim. Cyberbullies are often victims and vice versa, therefore parents should see if their own child’s actions triggered the current situations. If the bullying is persistent or even begins to escalate families can contact webservers and internet service providers promptly. Many social media sites and internet service providers have ‘contact us’ options for emailing or calling. Some sites allow you to block the offending person from being active within your account. Facebook, for example, has introduced options so individual posts can be reported.

If the online behavior becomes threats of harm, violence, or extortion families should immediately contact the police. If your child ever receives pictures of another nude minor this should also be immediately reported as these images are considered child pornography and possession is a crime. Children should be warned to never post nude photos of themselves, as distribution of child pornography is also a severe crime. In many cases families can also reach out to schools for help when their child is being cyberbullied. Each school district will have a unique policy though and parents should take the time be aware of their local policy in advance.

As medical providers one of the best ways to make an impact is to seek out and identify when cyberbullying occurs. Many children and teens will attempt to hide the fact that they are being bullied as they fear adult involvement will make the situation worse, or that their online privileges will be revoked. Children should be specifically asked if someone has said mean or hurtful things about them online, sent nasty text messages, or even threatened them. Many children also express doubts of the competency of adults online. Having an active, professional web presence, especially through social media, can demonstrate to your patients your proficiency in the digital world. Review with families the rules of how to respond to ugly online behavior, what kinds of records to keep, how to stop their child from suddenly becoming the bully themselves, and when to contact the authorities.

 

Dr. Amy Seery is a native of Wichita who attended Kansas State University and KU Medical School. She completed her residency training at The Barbara Bush Children’s Hospital at Maine Medical Center in Portland, Maine. During her residency training she became a passionate obesity advocate as well as a local physician expert on bed bugs and cyberbullying. She returned to Wichita in 2011 to join the Via Christi Family Medicine Residency program as faculty. She is also currently the chair for the Pediatric Section at Via Christi Hospitals in Wichita. 

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Supervising A Medical Family Therapy Intern on a Tough Conversation

Posted By Connie S. Cornwell, Thursday, June 18, 2015

 

As a supervisor, it is a challenge to supervise interns working with couples and families dealing with chronic illness. We want to help the patients while also taking care of the intern in training and being aware of our own personal feelings toward illness.

 

This challenge was evident during a case when an intern providing couples therapy asked for live supervision. One of the partners suffering with a demyelinating disease was very upset while the other partner seemed withdrawn and unresponsive. The intern worried that the partners had much to discuss but remained silent. During live supervision I validated the intern’s perception and asked what she suspected was occurring. It was what I feared; the non-ill partner does not seem comfortable giving care and may want out of the relationship.  I struggled with my own reaction: - how could he be so insensitive to his partner’s suffering? Yet he appeared uncomfortable and I suspected he resented the care giving that had taken over his life.  They had never planned on this. They had things to do, and adventures yet to experience. Illness can test relational bonds and I silently wondered could my own relationship undergo such a chronic test.

 

I felt sadness welling up in in me and decided to check whether the intern was possibly experiencing her own sadness.  I discovered that the intern was feeling hopeless and helpless. Now I too felt caught. What if we urge the partners to speak honestly and someone dies in the process?  What if they feel the therapy has done harm? What if the abandoned partner is unable to recover, and the partner who leaves is demonized?  All those things a family therapist dreads and sees as failure. I suggested the intern invite the couple to talk about the things they were afraid to say to each other. As predicted the partner was not sure he could remain in the marriage.   He had not signed up for this, and was thinking about divorce. She suspected he wanted out, and had been making preparations to find an assistant living home. There was no scene or outburst, just silence with the confirmation of what each had not been able to say to the other. With urging from the intern, the partners began to talk about their struggles and the domination of the illness in their life. As the session ended they both appeared relieved to have been able to speak about their worst fears. The relief was also experienced by the intern and supervisor. 




Topics that are off limits need to be discussed to prevent the distancing that can occur in the relationship (Rolland, 1994). Giving space for tough conversations allows for all involved to draw on their resources and to live more authentically. As a supervisor, I encourage my interns to ask the tough questions when it appears a loved one is withholding, fearing the outcome.  Carl Whitaker, a family therapist, said it is the “covert that we have to make overt” or it will create havoc.

As I recommend to the intern to probe and encourage honest dialogue with and between the patients there is the fear: - will it create a damaging experience for the intern and no benefit for the patients?  Remember “do no harm” is an ethical and moral premise. As a supervisor the question is: - can I handle the fallout and take care of the intern while at the same time benefitting the clients? However, before the intern can do this level of work I have to be sensitive to the spoken and unspoken fears an intern may have working with patients who are chronically or terminally ill. I invite the intern to tell her own story about experiences with illness and frame the experience as a source of strength for the intern in working with the chronically ill.

I further invite the intern to speak about what may be unspeakable for her concerning illness. It is the speaking of fears that creates openness for one to experience compassion for the other and more importantly compassion for the self. As with the couple, it is a reminder that physical fragility does not necessarily portend emotional or personal fragility.  As I explain to my interns I am also reminding myself that we are not defined by illness, condition, or even our feelings or thoughts.  These are experiences to be shared in hopes of becoming more open, flexible, and free.  When illness is an uninvited family member it is truly a collaborative effort between intern, patients and supervisor to discover the psychosocial map (Rolland, 1994) that provides support and reassurance for these tough conversations.

References

Rolland, J.  (1994). Families, Illness, & Disability: An integrative treatment model. New York, N.Y.: Basic Books.


 

Connie S. Cornwell is Licensed Marriage and Family Therapist and Supervisor, Licensed Professional Counselor and Supervisor, Clinical Fellow and Approved Supervisor of American Association for Marriage and Family Therapy and Member of American Family Therapy Academy.  Ms Cornwell has over 30 years of experience as a couple and family therapist, educator, trainer and supervisor. Ms Cornwell is the Senior Supervisor of the University of Texas Southwestern Medical Center Department of Psychiatry Family Studies Center in Dallas, Texas where she is training and supervising couple and family therapy interns, medical students and psychiatry residents.

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Heroic Measures

Posted By Patrick Allen, Tuesday, June 9, 2015

It was harvest – a time that I have grown to respect after moving to the fertile plains of Kansas three years ago for residency. During this time, a family would learn whether the year of hard labor had reaped financial stability.  Harvest had a heightened importance in the Sahel. Located on the edge of the unforgiving Sahara, it has some of the worst poverty on Earth. One month of rains were the only chance for income and food for most of the Hausa people I was there serving.  Harvest and its hard work brought hope that perhaps fewer children would starve this year.

 

It was poor timing for a "70” year old man to become so short of breath that walking was no longer possible. Convention was to guesstimate ages to the nearest decade, so his true age was unknown. He had breathing problems and swelling in his legs for "a while,” but he had lacked the finances, time, and hope needed to seek out medical care. 

 

This time, however, it could not be ignored.  His two sons gathered the money from a few relatives, borrowed a small motorcycle from yet another, and sandwiched their father’s weak body between theirs. They left their millet fields and children, and journeyed towards the hospital.  Both sons were needed, as most of their father’s care at the hospital, even food and water, would depend on them.

 

His diagnosis of severe heart failure was readily apparent, and his low oxygen and labored breathing made me worry that he would not survive.  But this man was not yet on any medications. I convinced myself that this might be one of the dying patients I could save.  I started the most aggressive therapy we had available and waited.



 

By the next morning he was even worse than when he arrived.  He was now unable to lie down in his hospital cot lest fluid accumulate in his lungs and suffocate him.  His sons began taking shifts – sitting behind their father with a leg straddled on either side of his, arms gripped backwards around the cot’s frame to support the weight of their father’s frail body on their chest. 

 

Back home I worked part-time at a hospice.  I was accustomed to coaching families through the last days.  I was used to families enduring all the appointments, the tests, the ICU’s, the battles with insurance companies, the mixed messages, and the roller coaster of expectations, all fueled by a burning hope that "we can get dad better”. Eventually, that hope yielded to an acceptance that this just might be "his time to go.”  Through compassionate communication, I would elicit the family’s true goals of care (comfort, dignity, meaning) and help arrange for those to be met as the end approached.

 

Among the Hausa, however, death is well accepted, even in children.  Yet these young men endured anyways.   Why?  For days these two sons propped themselves upright on the colorful woven cot, patiently bearing their father’s weight in order to help him to breathe.  As I saw them each morning, unmoved, I myself was moved to tears.  I owed them my best. Though recovery seemed less likely each day, I would ask their permission to try something else, to give it one more day.  Maybe we could turn this around.  As I informed them of my thoughts and presented them with options, their response was always the same – nothing.  "Just tell them what to do,” my translator would tell me.  There was never a hint of frustration, tiredness, or impatience.


I came to accept that their endurance was not fueled by hope for a miraculous recovery.  I think, rather, that they were fueled by unquestionable respect for their father, the man who taught them how to live and work, what it means to be Hausa. In fact, they recognized and accepted the end a few days before I did.  When I recommended that they disconnect his oxygen and carry their father homeward, they simply accepted with a stoic nod of understanding. 

                  

We talk a lot about heroic measures in our healthcare system. By this we imply resources:  medicines, monitors, tubes, consultations, procedures, devices, etc. 

 

However, the most heroic care, the care that I will desire when my time comes, has little to do with payer source or access to resources:


Respect.  Compassion.  Physical presence.  Physical touch.  Tenderness.  Sacrifice.  Patience. 

 

I think these sons, and their father, reaped a more meaningful harvest than grain this season.

  Patrick L Allen, MD, studied at Texas A&M University, then the University of Texas Medical School at Houston before completing his Family Medicine residency at Via Christi Hospitals through the University of Kansas - Wichita.  His interest in Global Health and Tropical Medicine led him to pursue a one year International Family Medicine Fellowship, which included 5 months of intensive service in Niger.  He is also passionate about primary care medical education, both domestically and abroad. 


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What is Family? The Harry Potter Case Study

Posted By Randall Reitz; Kaitlin Leckie, Friday, June 5, 2015

 

In recent decades few words have become more politicized than "family”.  Some groups would limit a family to a man married to a woman and their naturally born children.  Others would expand the definition beyond any recognition or legal application.  The Harry Potter series written by J. K. Rowling presents an interesting case study on the diverse manifestations and implications of family.


Caveat:  If you’re a muggle who’s never read Harry Potter, you will require magical intervention to understand this blog post and will be frightened by myriad plot spoilers. Read the series and then return to this research.  And, no, watching the movies is wholly insufficient.


Biological Family of Origin


Harry is the only child of James and Lily Potter.  His parents were killed by Tom Riddle (a.k.a. Voldemort) when Harry was still an infant.  Despite this early loss, Harry’s parents play a vital role throughout his life.  


While Harry can track much of his greatness to their courage and smarts, his parents—especially his father—weren’t always good role models for Harry.  Fortunately, the parents seem to have matured by the time they conceived Harry—both of them becoming aurors and founding members of the Order of the Phoenix during the first war with Voldemort.  Like his father, Harry has a mischievous streak and occasionally breaks school rules, such as sneaking around the hallways after bedtime in his invisibility cloak. However, his trouble-making does not cross the line into bullying, as his father’s did. Instead, his behavior toward his peers, muggles, and magical creatures reflects his mother’s compassionate nature. In developing his own identity, Harry balances qualities of both his parents.


Harry’s deceased parents visit him in three different settings, at crucial times in his development and heroics.  In Book 1, during a particularly difficult time when Harry feels alone and questions his place in the world, he is able to see his parents through the Mirror of Erised. He is immediately struck by how closely he resembles his father’s unkempt appearance and how he shares his mother’s emerald eyes.  It is the first-time that Harry feels the loving gaze and unconditional acceptance of family.  He becomes so absorbed in his family’s love that he risks wasting away in front of the mirror.


In Book 4, as Harry duels Voldemort, his wand locks with Voldemort’s and his ethereal parents emerge from Voldemort’s wand (the wand that had killed them) and provide encouragement and counsel to Harry. Similarly, in Book 7 James and Lily emerge from the Resurrection Stone, along with their friends (and Harry’s deceased mentors) Lupin and Sirius.  They provide enlightenment and promise to accompany him as he accepts the fate of his own mortal sacrifice:


"He knew they would not tell him to go, that it would have to be his decision.


‘You’ll stay with me?’


‘Until the very end,’ said James.


‘They won’t be able to see you?’ asked Harry.


‘We are part of you,’ said Sirius. ‘Invisible to anyone else.’


Harry looked at his mother.


‘Stay close to me,’ he said quietly.


 And he set off.”


 

Adoptive Family


The only family Harry knows in his first eleven years is his maternal aunt, uncle, and cousin, the Dursleys. Though related by blood, Harry is as opposite from this biological family as disengagement is from enmeshment. The Dursleys perpetuate his role of scapegoat and parentified child by forcing him to cook and clean and by berating him whenever possible. Yet, Nature wins out. Harry maintains his innocent character despite being under the roof of the materialistic and tyrannical Dursleys. Although he has an understandable right to be angry at their maltreatment, Harry is kind, appreciative, open-minded, and pure of heart.


While the Dursleys have legal status as Harry’s caretakers, the very first pages of Book 1 foreshadow the characters who will be the adoptive parents of Harry’s heart.  Albus Dumbledore and Minerva McGonagall place Harry at the Dursleys’ doorstep after his parents are murdered.  Their love and commitment are already apparent in their anxiety at leaving Harry in the hands of his narrow-minded, contrary biological family. 


This parental connection develops throughout Harry’s years at Hogwarts, as Dumbledore is the school’s headmaster and McGonagall is head of Harry’s house, Hogwart’s deputy headmistress, and eventually headmistress.  Dumbledore is the wizard whom Harry most admires and the person who pushes Harry to fulfill his destiny as The Boy Who Lived.  As with most children, Harry experiences shock and loss when he discovers that Dumbledore isn’t the perfect parent-figure he had idolized. For her part, McGonagall watches over Harry: correcting him sternly when required but also advocating for him throughout the series.  While Dumbledore and McGonagall are not husband and wife and don’t always agree, they are both committed to raising Harry for greatness and goodness.


Summer visits to the Weasleys’ Burrow are the closest experiences Harry has to a traditional home life.  The Weasley parents love Harry like a son and initiate him to family traditions that the Dursleys had deprived him. 


Quasi Family

 

Harry benefits from a large community of loved ones who fill family-like roles.  James and Lily chose Sirius Black to be his godfather, a role he fills with deathly seriousness. Harry’s close Hogwarts friends who join him in Dumbledore’s Army are the siblings that Harry never had: Ron, Hermione, Neville, Luna, Fred, George, Cho, and Lee.  Hermione would be upset if we called Dobby Harry's pet, so we'll instead consider him a doting, awkward younger brother. Harry is never able to overcome the family and wizarding lore that creates a wall of acrimony between Snape and him.  However, it is easy to compare Snape to a begrudging step-father who steps in to raise the child of the woman he loves.  Tonks and Lupin are his favorite aunt and uncle; Hagrid is obviously the crazy uncle. 

 

 

 

Family of Creation

 

When Harry has the chance to create his own home, he intentionally brings together the best aspects of all his v

   

gnificant family-figures: James Sirius, Albus Severus, and Lily Luna.  He pursues the same career as his parents, and his children continue the Potter/Weasley tradition of attending Hogwarts—although we’re left not knowing if they are sorted into Gryffindor or Slytherin.


How Does This Apply in the Muggle World of Collaborative Family Healthcare?


At this point, our research proffers few answers and far more questions for future studies:

·         Who should we consider family when intervening in integrated care?

·         How can we best assess the positive and negative contributions of family?

·         What supports and resources should we draw on in supporting patients and families?

·         How can we incorporate family beliefs—both magical and spiritual—regarding the influence of family in this life and beyond?

 

Randall Reitz, PhD is the Director of Behavioral Sciences at St Mary’s Family Medicine Residency and Medical Family Therapy Fellowship.  He has read the entire series 3 times and has blogged on Harry Potter previously.  Like Hermione, his patronus is an otter.

 

  Kaitlin Leckie, PhD is the Director of Behavioral Health Education at Southern Colorado Family Medicine Residency. She has been studying/appreciating Harry Potter for decades and recently took a pilgrimage to the Mecca of Harry Potter at Universal Studios Orlando. Her Patronus is an ocelot. 

 

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Typology of Romantic Music: A Highly Scientific Thematic Analysis

Posted By Randall Reitz, Kaitlin Leckie, Friday, May 15, 2015

Methodology

 We conducted a survey of popular music. Full disclosure: no factor analyses or structural equations were hurt in this study. Rather, we created our typology by plumbing our memories of high school and trolling the radio presets on a drive to work.  We then googled the song lyrics and consulted websites that use crowd-sourcing to explain lyric meanings.  We can neither confirm nor deny that Urban Dictionary informed our findings.

                                                             

Results

We’ve concluded that the relationships described in all popular music fit neatly into 1 or more of the following 5 categories:


·         Co-dependent: 25%

·         Over-sexed / Rapey: 25%

·         Unsustainably sappy: 25%

·         Bitter / Emotionally cut-off  20%

·         Healthily committed: 5%

 

Co-dependent

Lady Antebellum is still clearly the gold standard:

 

"It’s a quarter after one, I’m a little drunk and I need you now.

Said I wouldn’t call, but I’ve lost all control and I need you now.

And I don’t know how I can do without, I just need you now.

Oh, whoa, guess I’d rather hurt than feel nothing at all.”

 

  


Over-sexed / Rapey

Yes, "Blurred Lines” is the obvious song to define this category, but we’ll keep things fresh by highlighting every middle schooler’s favorite Maroon 5 song:

"Baby I’m preying on you tonight

Hunt you down eat you alive

Just like animals, animals, like animals-mals”

     


 

Unsustainably sappy

Dido’s "Thank You” would have gone thankfully unnoticed were it not picked up by Eminem and sampled into his hit "Stan”:

 

"I drank too much last night, got bills to pay

My head just feels in pain

I missed the bus and there’ll be hell today

I’m late for work again

And even if I’m there,

They’ll all imply that I might not last the day

And then you call me and it’s not so bad

It’s not so bad and

I want to thank you for giving me the best day of my life

Oh, just to be with you is having the best day of my life”

 

"Stan” also has the notoriety of turning obsessive jealousy into a sing-along homophobic anthem.


 

 

Bitter / Emotionally cut-off

While we applaud female artists who have expanded the definitions of feminism to include self-empowered sexuality and masculine bravado, sometimes these songs aspire for Angelouian lyricism but their Icarusian arc drops to petty trash talking.  Beyoncé to wit:

"You must not know ‘bout me

You must not know ‘bout me

I could have another you in a minute

Matter fact he’ll be here in a minute, baby

 

"You must not know ‘bout me

You must not know ‘bout me

So don’t you ever for a second get

To thinking you’re irreplaceable”

 

 

 

The Trifecta

Leave it to the 50 Shades of Gray soundtrack to offer an ear worm that exalts 3 categories simultaneously (spoiler alert: co-dependence, over-sex, and sap are nearly always followed by bitterness).

"Fading in, fading out
On the edge of paradise
Every inch of your skin is a holy grail I've got to find
Only you can set my heart on fire
Yeah, I'll let you set the pace
Cause I'm not thinking straight
My head spinning around I can't see clear no more
What are you waiting for?”

 

Discussion

Why are we drawn to songs about unhealthy relationships?
Why are songs about loving, normal, enduring couples reserved for wedding days and anniversaries?

We assert 2 reasons:


1) Healthy relationships are artistically dreadful. Boring. No one wants to hear a song detailing the work required to sustain such a relationship—the patience everyday compromises, tradeoffs of action movies with rom-coms, and biting your tongue when your partner loads the dishwasher wrong AGAIN. In contrast to this tedium, the tension and discomforting images of the unhealthy relationship songs provide a captivating edge.


2) We identify with the unhealthy lyrics. Our selves and our relationships reflect the dysfunction of our popular songs. We’ve all been there at a quarter after one (+/- the alcohol) yearning for the affection of someone whom we know is bad for us. We’ve all found healing in dissing the person we had hitherto deified. Few, if any, of us have relationships as idyllic as an Air Supply chorus. We identify with the unhealthy lyrics.



That said, in our clinical work, the couples with whom we work struggle with levels of dysfunction that threaten the survival of the relationship. Healthy song lyrics (especially ones that tell a narrative of resilience) can play the same role as bibliotherapy and youtube clips. Here are a few recommendations for therapeutic songs that are both artistically alluring and therapeutically relevant:


Power of Two and Prince of Darkness by Indigo Girls
Same Love by Macklemore and Ryan Lewis
The Middle by Jimmy Eat World
Remember When by Alan Jackson
Unpretty by TLC
Umbrella by Rihanna and Jay-Z
Forever by Ben Harper
Stuck in a Moment by U2
Til Kingdom Come by Coldplay

 

 

 

What do you think? Is our typology complete? Do you recommend music to patients? If so, what are your favorites? 


  Randall Reitz, PhD is the Director of Behavioral Sciences at St Mary’s Family Medicine Residency and Medical Family Therapy Fellowship. His tastes in unhealthy lyrics vary from Queen to Avett Brothers to Lady Gaga.

 

  Kaitlin Leckie, PhD is the Director of Behavioral Health Education at Southern Colorado Family Medicine Residency. Her Pandora radio is constantly shuffling between alternative, rock, rap, and everything in between.

 

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6 Tips for Helping Families Talk about Eating Disorders

Posted By Brittney France, Thursday, April 30, 2015

"When I is replaced with WE, even ILLness becomes WELLness


My first experience working with the eating disorder (ED) population was as a milieu therapist in an inpatient eating disorder unit. As milieu therapist I led groups, supported meals, and managed the unit throughout daily activities. Through spending 8 to 16 hours a day with patients over the course of weeks or months, trust began to develop and I was privileged to hear their stories. I began to view EDs as a coping tool, an escape, and as protection. They do not develop solely because someone wanted to look better in jeans or because they saw a skinny model on a magazine; they are complex biopsychosocial diseases and steps toward recovery are often tedious.

Through observation and listening I began to notice a pattern among the adults and children on the unit- the revolving door effect. Often, once patients entered their life outside the unit, symptoms reappeared and patients re-entered treatment. As a new treatment provider, I did not understand the complexity of this process. I knew these individuals had the skills, insight, and strength to take the necessary steps toward overcoming their illness. However, recovery is not a straightforward path. Studies estimate that 50-55% of adults recover within 6-8 years, and this is often marked by periods of relapse.1, 2

Therefore, something is different outside the treatment walls.  On the inside, the program offered twenty-four hour structure, meal plans and support, as well as groups with the other patients on the unit. Outside the walls were relationships, stressful experiences, triggers, social pressures, gender imbalances, injustice, and pain.  EDs cannot be viewed outside of relationships and the environment in which the person lives.  What I experienced on the inpatient unit sparked a passion that lead to pursuing my PhD, with a focus on understanding and serving this population.

Currently I work in a private practice specializing in the wide spectrum of eating disorders. Whether I’m working with a 65 year old male with binge eating disorder, or a 13 year old female with anorexia, one treatment goal remains the same: help the client build a support network. While many programs are beginning to include family and support systems into adult ED treatment, research is needed to better understand the impact of including carers in their treatment.3 There is limited research on adolescent EDs and family treatment as well.4 However, of the eight randomized control trials that have included children and adolescents, seven include a family element. Those that were outpatient-based and had parental intervention were more effective than comparison treatments.4

With this in mind, I receive phone calls and emails from family members thinking someone they love has an eating disorder, yet they do not know how to talk about it. Family members often want to help but do not feel equipped to do so. Why are eating disorders still so hard to talk about? I believe stigma and lack of education around eating disorders continue to hold many people back from seeking the support they truly need. Eating disorders are not a choice, they occur in both males and females, and all forms of eating disorders are serious.5 There are some common myths around eating disorders, and in this powerful video, ED expert Cynthia Bulik powerfully tackles some of them. Medical and mental health professionals need to be equipped to dispel these false claims and facilitate supportive conversations for individuals and family members.

The following are 6 tips for encouraging positive family conversations about EDs.

1. Take an open stance to the conversation: Do not have an agenda or certain point you feel your loved one needs to understand by the end of the conversation, ask open ended questions. Be open to both their and your own reactions.

Example Questions: What is it like for you to have an eating disorder?, What has it been like for you to see me struggle with an eating disorder?,

How can I be a support? How can we continue to talk about the eating disorder?

2. Do not give advice:Speak from a place of concern. Many times we want to give advice out of love and trying to "fix” a situation. However, if the behavior was not helping the individual in some way, they would not be engaging in it. Advice such as "Just eat more” or "Try to exercise” can invalidate struggles and perpetuate symptomology.

Example Question: How can we work together to reach the treatment goals?,

3. Validate feelings:Eating disorders are complicated. Those who overeat or binge do not "lack will power” and those who restrict food intake or over exercise are not vain. When someone with an eating disorder does open up it is important they feel the environment is safe. Validation and support can go a long way. However often those with eating disorders have a difficult time expressing their needs or emotions. Simply acknowledging their challenges and efforts can both help them identify these needs and emotions and express an understanding for the difficult process.

4. Avoid demanding changes: Recovery is a long process. Avoid ultimatums (If you don’t change then I will…) and instead express support throughout the process.

5. Do not feel blamed for the illness: You are not to blame for your loved ones struggle. In the end the individual with the eating disorder needs to do the work. However you can learn ways of communicating and supporting their needs that can help in this process.

6. Do not push the conversation: If a loved one is resistant or denying the presences of a problem do not push this issue on your own. Encourage the individual to speak with the trusted physician or mental health provider. These conversations are difficult and can take time to open up to. 

Whether working in family practice, pediatrics, or specialty settings you will most likely encounter someone with an eating disorder and a concerned family member or spouse. Relationships are complicated. Stressors, such as illness, often magnify worries and fears. Through sharing these tips you can help promote communication and a reduction of stigma around eating disorders. I hope these help you as providers feel confident and guided in facilitating/encouraging these conversations in your patients/clients. 

References 

1.      Eckert, E.  D., Halmi, K.  A., Marchi, P., Grove, W., & Crosby, R.(1995).  Ten-year follow-up of anorexia nervosa: Clinical course and outcome.  Psychological Medicine, 25, 143-156. 

2.      Fichter, M. & Quadflieg, N. (2007). Long-term stability of eating disorder diagnoses. International Journal of Eating Disorders,40(S3), S61-S66

3.      Le Grange, D., Lock, J., Loeb, K., & Nicholls, D. (2010). Academy for eating disorders position paper: The role of the family in eating disorders. International Journal of Eating Disorders43(1), 1-5.

4.      Lock, J. (2011). Evaluation of family treatment models for eating disorders. Current Opinion in Psychiatry24(4), 274-279.

5.      NEDA Toolkit for Educators. (n.d.). Retrieved April 28, 2015, from https://www.nationaleatingdisorders.org/sites/default/files/Toolkits/EducatorToolkit.pdf

 


Brittney France, MA, MFTI currently lives and works in San Diego, CA. She has completed her classwork for her Ph.D. in Marriage and Family Therapy with a concentration in Families, Systems, and Health. She currently divides her time between writing her dissertation with a focus on families and eating disorders, working in a practice specializing in eating disorders, and teaching a class of masters students. She hopes her research will continue to bridge the gap between Medical Family Therapy and eating disorders research.

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Caregiving, Dementia, and Sex

Posted By Matt Martin, Cathy Hudgins, Barry J. Jacobs, Wednesday, April 22, 2015



 

On April 7th, the Washington Post reported on a case involving Henry Rayhons, a former member of the Iowa House of Representatives, and criminal charges of third-degree sexual abuse. State prosecutors charged Mr. Rayhons for having sex with his wife, Donna Lou Rayhons, in August 2014 while she was incapacitated by dementia and living in a care facility. Jury deliberations began on Monday April 20th, 2015.

Henry and Donna Lou married after their longtime spouses had died. A few years into the marriage, Donna Lou was diagnosed with dementia. In May 2014, two of Donna Lou’s daughters met with care facility staff members to create a care plan for their mother. They, along with a doctor, decided that mom was no longer able to consent to sex. Henry was informed of this decision.

Donna Lou died in a nursing home in August 2014 after a four-year battle with Alzheimer’s. Henry was arrested and charged with sexual abuse a week later. According to law experts, this is the first case of its kind regarding capacity and dementia. At what point in dementia does a spouse or partner lose the right to say yes? Cathy Hudgins and Barry J. Jacobs provide commentary below. Click here for another viewpoint on this case.

CATHY HUDGINSAfter reading this article and accompanying documents, I had more questions than I had answers. Early in my career as a Marriage and Family Therapist, I practiced at an adult day services center that served participants with various types of dementia and cognitive impairment. In working with these older adults and their families, I gained an appreciation for the extreme feelings of loss and confusion related to how to proceed with relationships and basic life issues. I worked with many family members and caregivers who had little guidance or experience prior to the onset of the disease.  I remember giving these folks some room to learn and make small mistakes as they navigated the decline of their loved one. However, we taught our families that there were lines that no one would be allowed to cross, and those lines were drawn by the state’s definition of elder abuse.

Mrs. Rayhon’s disease progression was determined by the provider team, which included her family, at the facility through a validated screening tool and through the expertise of the providers and staff. As a way to educate and draw the line for Mr. Rayhon, it was conveyed overtly that she would no longer be able to consent to sex. From what Mr. Rahyon’s family wrote in rebuttal to his case, they believe (and I assume in concert with his belief and actions) that there should be no such restrictions to protect patients in a nursing home – even those that score a 0 on a dementia assessment. It is this kind of thinking that actually initiated protective services for vulnerable populations many years ago. The bottom line is that Mr. Rayhon knew that she could not consent, and he decided that his right to have sex with his wife trumped the law and the boundaries drawn for her based on an assessment of her capacity.

 

I do have several questions about this case, however. Does Mr. Rayhon have some type of cognitive decline or mental health problem that would make someone in his position as a law-maker disregard the law? While it does not sound like he had time with her prior to the sexual encounter to interpret her ability to consent at that time (I have seen several patients with dementia experience short windows of clarity), did he interpret something she did as consent? 

Finally, I am not sure what Dr. Pearson meant by "at what point in dementia do you lose the right to say yes?” In my opinion, the ability to consent, if even possible at her stage of the disease, is transient, and the limitations associated with those moments of clarity are inconsistent at best. This fact is why the line must be drawn to protect vulnerable individuals, even from those who love them. There is no doubt that physical closeness can be curative and comforting. Nevertheless, there are other ways to satisfy this human need in lieu of an act that requires consent. 

BARRY J. JACOBSSome landmarks cases—whether legal or clinical—help us forge ahead into new territories of understanding and knowledge. Others, like signposts at the edge of frontiers, delineate the outer edge of the known world beyond which we are lost in cloudbanks and quicksand. The Rayhons case—about marriage, dementia and sexual consent—catapults us into a wilderness of clinical fuzziness, moral ambiguities, and legal murk.

We are all in agreement that sex should be consensual between intellectually capable adults. But determining exactly the point at which a person with a progressive dementia loses the capacity for informed sexual consent is not scientific at this point. It’s often clinical guesswork, based on wildly inappropriate measures (e.g., using memory test results to calculate degree of sexual understanding). The "line” that my colleague, Dr. Hudgins, refers to is not so clear; it is a legal construct, based on clinical impressions, extrapolations and opinions. This idea of a "line” is sometimes used to prevent people in nursing homes from engaging in sex, as if they lose that right once they enter the institution. The "line” was used in this case as a weapon by step-daughters in a power struggle with their step-father for control over their mother’s last months.

That is quite familiar in this family-and-illness drama (at least in the more detailed Bloomberg news story). Mr. Rayhons wanted to take care of his wife with dementia at home. Her daughters from her first marriage decided that he was in denial about her degree of impairment and, with the collusion of a family physician, placed her in a nursing home one day against Rayhons’ wishes while he was at a state legislative session 30 miles away. (As her husband, he should have had the legal right to make decisions about where she would reside. How did her daughters usurp that right?) After that, it appears that they sniped at one another and struggled over details of Mrs. Rayhons’ care at the nursing home. When the daughters took steps to protect their mother through limiting the privacy that their step-father would have with her, he responded by flouting the rules they set up. Seen from this perspective, his alleged act of having intercourse with his wife was, as much as anything else, a gesture of defiance toward his step-daughters.

 

A family-oriented professional could have helped these warring parties find some compromises and accommodations before the story’s climax (so to speak). Unfortunately, the professionals seem to have banded together to demonize the husband. He may have acted rashly or even naively but I don’t believe he’s a demon. And I don’t think an Iowa jury will determine he’s a criminal—just a lost and angry man who wandered into the poorly charted landscape of dementia and the law. 

 

Matt Martin, PhD, LMFT, is Blog Editor for the Collaborative Family Healthcare Association. When he is not blogging or editing he teaches behavioral science to family medicine residents at the Duke/SR-AHEC residency program. Interested in writing for the blogs? Email Matt at matt.p.martin@gmail.com 

Cathy Hudgins, PhD, LMFT, is the Director of the Center of Excellence for Integrated Care under the North Carolina Foundation for Advanced Health Programs. Dr. Hudgins has experience in Integrated Care management and development, crisis assessment and intervention, community-based and college-based outpatient counseling, in-patient assessment and intervention, and community mental health consulting. She has practiced in community mental health agencies, hospital and healthcare settings, as well as in private practice. She has also held a variety of posts in higher education administration and student affairs. She is an active member of the Collaborative Family Health Association and AAMFT and presents locally and nationally on Integrated Care. 

Barry J. Jacobs, Psy.D. is the Director of the Behavioral Sciences for the Crozer-Keystone Family Medicine Residency and the lead faculty member for its super-utilizer program, the Crozer Connections the Health Team, and the Camden-Cooper-Crozer Hot-Spotting and Super-Utilizer Fellowship Program. He is also the author of The Emotional Survival Guide for Caregivers (Guilford, 2006).

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Looking for Batman in Primary Care

Posted By Patrick McFarlane, Thursday, April 16, 2015

 

GOTHAM ASSISTANCE

"I like batman,” she said

baring her chest to reveal a dishevelment of a tattoo

of the famous Gotham call for assistance

that police commissioner Gordon would shine into the sky.

"I’m really into werewolves too.”

She wears a sweatshirt with the same logo like an echo,

layers of a symbol of the superhero she seeks,

and the superpowers she hopes for.

I asked her why she likes these superheroes,

And she said I don’t know, I just do.

When she tells me how her orbit was fractured

   by an ex-boyfriend,             

and how her mother was an addict who allowed

her using friends into her bedroom as a child

it all made sense.

If, as we are told, 40-70% of all primary care visits are related to underlying psychosocial issues 1 and if the resident physicians are right that 80% of the job is health education and they get to do that only 25% of the time 2, then that leaves 55% of the time that the physician isn't able to respond to which is perhaps the foundation of the patient problem; or to use the metaphor of the opening poem, Batman doesn't show up when called.

Batman is supposed to show up and fix the problem when called. When Batman doesn't show up, or when people don’t know how to call Batman, patients go to the emergency room or urgent care, or get referred to specialty care at great cost both in terms of cost and morbidity.  

Ted Epperly, Former President American Academy of Family Physicians (AAFP) in his plenary at the annual AAFP Program Directors Workshop in March 2015 eloquently described a future of team based care with patient metrics allowing multidisciplinary staff to work at the top of their license responding to patient needs with physician’s concentrating on the most concerning patients and their broad presentations, with incentives for ‘doing what it takes’ to keep people well and out of our emergency system. The technology exists already to electronically interact with patients to determine levels of risk, find the highest risk patients and to educate and connect with patients who are well.  This is Batman stuff.

Arguably, asking patients about what has happened to them, how they think about it impacting their medical needs and what they want is du rigueur, a standard of practice in a patient centered medical home world.  As we move toward a firmer foundation under the expectation that providers inquire in order to address risk in a preventative care model, payment models that support and reward such intervention must be adequately supported. We will know that is the case when providers are able to 100% take the time that each patient requires.

The patient in the poem above is seeking what she failed to get from her family:  a sense of attachment, belonging, and safety.   The medical setting is certainly a poor substitute for what she didn't get, but it can provide a societal foundation for, as Epperly suggests 1, doing what it takes. Part of what it takes is knowing the patient well and diminishing the shame and loneliness that sets up the superhero dynamic. 

By taking time and leveraging the provider relationship with the patient,  we remind the patient that they in fact are their own superhero as a survivor and that preventative care models can be leveraged to improve health outcomes that matter to all of us.   It is a new model of care that disperses with the superhero dynamic and takes the whole patient into account (family, community and environment) which will move the patient toward better health and away from mythic medicine.

 

Patrick McFarlane, MSW, MA, MSN-APRN is Faculty and Director of Behavioral Medicine at the Eastern Maine Medical Center’s Family Medicine Center and Residency Program.   He has worked in integrated health since writing a HRSA Office of Rural Health grant for integrating rural primary care in Western Michigan  in 1998.  He has two boys,  Isaiah and Ben, and loves to Kayak in the cold North Atlantic around Penobscot Bay in Maine and it’s many tributaries.   His research interests including addressing issues of violence and poverty in primary care and reflective practice.  

References 

1. Epperly, Ted (2015) AAFP Program Directors Workshop Conference Plenary.  Kansas City, MO. 

 

2. McFarlane, Patrick (2015)   Resident Focus group in Transition to Office Practice Systems. Bangor, ME. National Ambulatory Medical Survey 2008 Survey Tables.  CDC, Mental Health workgroup  Atlanta, GA.

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