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Good Patients, Difficult Patients - Reconsidered

Posted By Karen Kinman, Tuesday, January 7, 2014

This is a response to Dr. Aronson’s article in the New England Journal of Medicine entitled, ""Good” patients and "difficult” patients – rethinking our definitions" (Aronson, 2013). This article will address these definitions, as well as her comments regarding the collaborative process of care, the unspoken rules of medical etiquette and traits of medical culture. I am writing from the systemic perspective of a medical family therapist. 

We know that families have a significant impact on health equal to medical risk factors (Campbell, 2003).  Families are present throughout the development of disease from diagnosis and treatment, to caregiving; each family member affects the biological, emotional, mental and social health and well- being of the others. As Dr. Aronson points out, it is part of the medical culture to see families as something to "deal with” rather than as a significant resource.  She notes that "truly good care” is a collaborative process. However, this collaborative process also means giving back control to patients and families in the management of their disease. 

Control of a patient’s treatment and management of disease, by healthcare providers, in- hospital or outpatient, is a daunting and elusive task. The real paradox is that as healthcare staff relinquishes control to the patient and his/her family, both enjoy a more satisfying and collaborative relationship. Experiencing the other side of medicine, as the daughter of a patient, Dr. Aronson points out how the culture needs to shift to one which welcomes, and perhaps expects patients and families to actively engage in their health care.

The culture needs to shift to one which expects patients and families to actively engage in their health careThis is more needed today than ever before, as healthcare has become more compartmentalized. Looking at healthcare as a system, there are multiple layers which affect the culture of medicine and its challenges which present today. Some of these layers include: a) the role of physicians in their knowledge and expertise regarding treatment and management of disease, b) the development of hospitalists, who are physicians who work solely in the hospital and have no history or relationship with the patient prior to admission, and c) regulations from insurance which come between physician and patient, affecting treatment protocols and time management. Nurses are trained in treating the patient and family holistically, but their time is limited in how much they can do, as well as their limited expertise with mental health issues. When organizing priorities, medication administration, treatments for wound care, and post- operative care come before attending to the psychosocial concerns of a patient.  

Having worked as a nurse for over 30 years, and now as a medical family therapist, I am increasingly convinced that standard care should integrate physicians’ focus on health and disease with the biopsychosocial focus which mental healthcare providers and medical family therapists provide.Medical family therapy is a biopsychosocial approach within a family systems framework, with individuals and families who have medical problems (McDaniel, Hepworth, & Doherty, 1992). Medical family therapists, like other mental healthcare providers, are there for staff as well as patients and families, and can address difficult issues such as noncompliance, denial, and inadequate pain management. They see themselves and the staff joining the family system, and therefore, assess interactional patterns between staff, and between staff and patient/family. This can result in improved staff-patient and staff-staff relationships and broadens the scope of solutions to issues in which traditional intervention may be ineffective. 

I have been in hospital environments which were not nurturing or empowering to patients and families, and environments which very much respected their choices in how they were going to deal with their disease, (whether or not the staff was in agreement with those choices). I am currently  working in an ALS clinic as part of a collaborative team with physician, nurse, social worker, dietician, speech therapist, physical therapist, and a resource person for medical equipment. One salient characteristic of this environment is that we not only have good patient-healthcare provider relationships, but relationships between the staff are more respectful, empowering, collaborative, friendly, and efficient. A medical family therapy perspective facilitates this culture of collaboration and respect.
Medical family therapists, like other mental health care providers, are there for staff as well as patients and families

As Dr. Aronson points out, a "difficult” patient is described by the healthcare team as one who either has mental issues or is not "acquiescing” to staff. Medical family therapists may see what is defined as "difficult”, for example, may be related to: a) unspoken rules or beliefs regarding a disease and its treatment of which the staff is not aware, b) unresolved family problems which emerge in the midst of acute or chronic illness and is deflected on staff, and/or c) staff’s perception which is influenced by their own experiences and meanings of health and illness.

Change in culture happens very slowly. Healthcare providers do recognize the significance of patient/family-centered care, but, such care is a huge shift from traditional practice. It requires support from the top levels of management, structural changes, and a redistribution of power within the system, rather than simply a change in language or more contact with staff. Utilizing and empowering patients and their families gives them responsibility and accountability in managing their health and illness. However, on a deeper level, this hopefully will increase healthcare providers’ awareness of the wisdom and expertise of their patients and families. Perhaps, in this case, if Louise was not a physician, her father may not have made it home.  In Dr. Aronson’s case, "difficult” translated into knowledgeable and competent.

References

Campbell, T. L. (2003). The effectiveness of family interventions for physical disorders. Journal of Marital and Family Therapy, 2, 263-281.

McDaniel, S., Hepworth, J., & Doherty, W. (1992). Medical family therapy: A biopsychosocial approach to families with health problems. New York: Basic Books. 


Karen Kinman, PhD, RN, LMFT-A, is currently working at UT Southwestern Medical Center Family Studies Center where she sees individuals, couples and families. She is a medical family therapist in an ALS clinic, and leads support groups for the Muscular Dystrophy Association. She is currently working on her certification in hypnotherapy, and is a therapeutic touch practitioner. She is adjunct professor at TXWesleyan University in the family therapy department. The majority of her 33 years of experience as a nurse has been in maternal-child health and neonatal ICU. 

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The Case for Identifying Family Caregivers on Medical Records

Posted By Suzanne Mintz, Tuesday, December 31, 2013

(This week’s blog is by Suzanne Mintz, a longtime advocate for family caregiving issues. In April 2012 the CFHA Board unanimously voted to support a chart documentation initiative by Suzanne. This initiative encourages health centers to include family caregiver identification in electronic medical records.)

Across the chronic care continuum there are only two people who are consistently present, a patient and that person’s family caregiver. Family caregivers are acknowledged as the nation’s primary providers of long-term care, but they are not equally acknowledged as primary providers of their loved one’s non-acute healthcare needs.

Family caregivers are like undocumented workers, they have no official status and there is no official record of their existence. There is a significant amount of research about the impact that family caregiving has on the health and wellbeing of family caregivers, most of which is negative unfortunately, but there is very little on the impact that family caregivers make in the lives of their care recipients or on the healthcare system as a whole. 

We know that:

  • Persons with multiple chronic conditions and/or disabilities are the most vulnerable and medically expensive members of society. Their care consumes approximately 75% of all healthcare dollars.
  • Family caregivers provide 80+% of the care for this cohort of the population, most of who reside in the community. 
  • Family caregivers are ill prepared for their "job” as homecare aide/attendant, nurse, advocate, physical therapist, etc. There is no organized mechanism for providing the education, training and support family caregivers need.
  • Family caregivers are not routinely monitored by their own physicians as persons who are at risk for chronic conditions themselves

Medical records are the official documents of the healthcare system. They provide the information on which care plans are developed, insurers pay claims, and the course of an illness is tracked. Yet nowhere on medical records is there a place to record who is and who has a family caregiver. There is a serious disconnect between the day-to-day reality of chronic illness care and traditional healthcare practice and payments. 

The early recommendations for Meaningful Use Stage 3 recognize this and call for giving  all members of the care team access to patient records, including family caregivers (with patient permission). This is a big step forward and implies that caregiver information will be captured. In addition to primary caregiver name and contact information, information about their role in the care process, their own health status and additional responsibilities should also be documented. 
Nowhere on medical records is there a place to record who is and who has a family caregiver
 
Documenting information about family caregivers on medical records is the first step. The bigger issue is how healthcare providers, hospitals, and health systems use the information to improve patient and family caregiver outcomes and quality of life. 

These are not easy questions to answer. The answers will not be the same for each caregiver/patient unit, but finding answers is essential because until there is a place on medical records to document who is and who has a family caregiver, and what their role is:

  • American healthcare will not be able to truly alter the way it provides care for those with chronic conditions
  • Family caregivers will continue to be relegated to the category of nuisance rather than taking their rightful place on their care recipient’s health care team, one who has intimate knowledge of the patient that is not available to any other team member
  • There will be no mandate for providing family caregivers with the education, training, and support they need to both be a more confident and capable care provider and also a responsible steward of their own health.
  • There will be the lost opportunity for research on the impact family caregivers have on their loved one’s health and wellbeing, healthcare costs, the value of different educational and supportive interventions, and caregivers’ own health behaviors.

As we move ever forward toward implementation of electronic medical records and coordinated care it is more important than ever that we address this issue. It is imperative that going forward medical intake forms and official records capture information on who is a family caregiver, who has a family caregiver and what role they play. Without recognition of the chronic care dyad the treatment of those with long-term chronic conditions cannot be as effective and efficient as possible, and equally important, family caregivers will not regularly be evaluated for the healthcare risks to which they are prone. For all the reasons stated above it is time for family caregivers to be given official recognition as full-fledged citizens in chronic illness care. 

On October 25th a diverse group of healthcare professionals, patient/family advocates, NGOs, government agencies and others attended the Summit on Identifying Family Caregivers on Medical Records to discuss the issues outlined above. One of the most intriguing ideas to surface at the meeting was that of providing chronic illness care based on an evolving, coordinated care plan that would include the role of everyone involved in caring for and assisting a chronically ill patient at any given time The meeting was convened by Family Caregiver Advocacy; Booz Allen Hamilton; Kaiser Permanente, and the Coalition to Transform Advanced Care. Here is a link to a meeting summary. http://e-patients.net/archives/2013/11/summit-on-identifying-family-caregivers-on-medical-records-by-suzanne-mintz.html 


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

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The Health Paradox within Marriage

Posted By Jeremy Yorgason, Tuesday, December 17, 2013

Health problems are generally seen as a stressor to those in committed, couple relationships. That is, when a partner becomes ill, it often puts a strain on the relationship through the ill partner (a) not being able to perform the same level of household chores, (b) losing time at work/earning money, (c) having to pay for doctor bills and prescriptions, (d) having less positive or increased negative mood, and (e) having fewer positive and more negative couple interactions. These stressors associated with poor health within couple relationships have been established in the research literature.

At the same time, there are a number of studies that have indicated paradoxical outcomes within couple relationships in the context of illness. For example, research has shown that some couples suggest that their relationship has become closer in ways because of one partner having diabetes, hearing loss, a disability, or arthritis symptoms. So which is the right answer? Does illness strain couple relationships, does it bring partners closer together, or can couples expect both strain and closeness? The answer may depend on how we view illness.


Our perceptions of illness provide the lens through which we see health challenges. From a health STRESSOR perspective, illness can present difficult challenges for individuals and couples. From a RESILIENCE perspective, some people are strengthened in their relationships when faced with illness challenges. In fact, some couples’ relationships may be stronger than they would have been had they not faced a health challenge together and bonded through that adversity.

Given that not all people respond to illness or health stressors the same way, and that some couples apparently develop stronger relationships through health adversities, what factors might more readily lead to "paradoxical” or beneficial results? Research suggests the following factors likely benefit couples:

- Having a strong marriage relationship prior to illness onset
- Communicating openly about health challenges
- Having empathy for an ailing spouse
- Having resources that can be tapped such as social support and appropriate medical care

Other studies suggest that being over-controlling and overprotective as a caregiving partner has detrimental effects.

Relationship resilience is possible among all couplesThere is so much more that we can learn about the bi-directional relationship between health and couple relationships. Future research ideas include examining partner flexibility in future life planning, relationship history of overcoming past challenges together, and whether healthy partners choose at some point during an illness to be committed to their relationship, to their partner, and to working through whatever may come regardless of the outcome. In short, the mechanisms of health challenges linked with stronger couple relationships are largely unknown.

From a clinical perspective, relationship resilience is possible among all couples wherein one partner or both are faced with health challenges. At the same time, the reality is that health problems are nearly always a stressor on couples. Perhaps the acknowledgement of stress with the willingness to pursue resilience in response to health challenges will provide hope and courage to struggling couples. Perhaps even relationships that are "on the rocks” or experiencing a pile-up of stressors can emerge stronger when faced with health challenges. Clinicians might specifically encourage couples to:

- Communicate regularly about the health problems, and the difficult decisions and topics they may face
- See themselves as collaborators in facing illness, rather than as being alone in the process
- Consider the illness as not being part of the ill person’s identity or the identity of the couple relationship 
- Discuss what is helpful support, and what, if any, types of support might feel overinvolved or controlling to the ill partner
- Try to balance autonomy in the patient, while allowing appropriate dependence or interdependence between partners

Hopefully with the encouragement of healthcare professionals more couples facing serious illness will experience the health paradox within marriage.


Dr. Jeremy Yorgason is an Associate Professor and Director of the Family Studies Center within the School of Family Life at Brigham Young University. He is also a licensed marriage and family therapist in the State of Utah. His research is focused on marriage health in later life, with an emphasis on how couples manage chronic health conditions. His research often involves daily diary surveys as well as information from both spouses in the relationship. He has studied couple relationships in context of various health concerns including osteoarthritis, acquired hearing impairment, diabetes, arthritis, disability, and declines in self-rated health. 

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Childhood Champions

Posted By Victoria Brodersen, Tuesday, December 10, 2013

As a second year Master’s student working toward a degree in Marriage and Family Therapy I am required to complete a year-long internship. In an attempt to become the best therapist I could be I decided to challenge myself. I wanted an internship that would confront everything I thought I knew and inspire me not to give up. Last May I began that internship experience with a Pediatric Hematology/Oncology out-patient clinic in Greenville, NC and so far I have not regretted a second of it. Serving children from birth through college, the Pediatric or "Peds” Clinic is a daily roller coaster of emotions. Families come in and deal with the harsh reality of having a sick child. 

Some come in with multiple sick children while others have one that is terminal. An unfortunate few come in after the parents themselves have beaten cancer just to go home and watch their young child wage the same war with this overwhelming disease. As a staff member you never have a ‘good day’. We have calm days with sparse appointments and no bad news. We celebrate those days. They are the little victories that keep us going but we know they will not last. When you work with hundreds of children, fighting various forms of cancer and blood disorders, you are bound to have days of defeat. There are days when patients are told they have relapsed, their cancer has spread, or they are not responding to the chemotherapy. There are days when children who have been healthy and in remission for years suddenly turn sick and die of unrelated cause. On that same day there can be children fulfilling their Make A Wish requests.
The "Peds" Clinic is a daily roller coaster of emotions

These families have friends that can be counted in the hundreds: nurses that grow attached, front desk staff with welcoming faces, teachers that bring school assignments to their house, and neighbors that offer to drive, cook, and babysit. They also have far more pain than should be allowed. Despite the difficulties these families have, there is overwhelming perseverance and optimism delivered to their door weekly in the form of children that remain playful and strong. If Mount Everest were measured in blood draws and unexpected hospital admissions, the "Peds” Clinic families would all boast having climbed it.

To say that a blood or cancer diagnosis is the worst thing to happen to these families does not give them the credit that is due. Sure for some the news in unbearable, coping is a struggle, and there seems to be no getting back to the way life used to be. But there are families that eventually see the diagnosis as the thing that made them stronger than before, brought them closer together than ever, and re-established their values in a time of fear. To the mother that has seen her teenage daughter with cancer have a stroke and then spend the summer on life support there is nothing more precious than the day that girl acts like a brat. The worst thing to happen would have been to lose that child. Never seeing your daughter healthy enough to have some attitude, some semblance of the child she used to be, would be a devastating blow to these mothers. Not even the best oncologist can predict which families will suffer that fate. 

Because each day together can be like winning the lottery I have seen families at the "Peds” Clinic take very little for granted. They run relays for life and make their wish. They take work leave and accept Ronald McDonald beds. They set up Facebook pages to support their child and share their story. They knit hats for bald heads and take vacations often. Not a moment lost nor a minute is forgotten.

What I have learned over the last seven months in the "Peds” Clinic is that children know no defeat. They have an innate ability to push on so long as there is an opportunity to play. Having a child with this sort of life changing diagnosis transforms every parent into a superhero. You will never see anyone fight so hard, for something so small, as a parent with a chronically ill child.


I am a graduate student getting my Master’s degree in Marriage and Family Therapy at East Carolina University. Originally from Nebraska, I received my Bachelor’s degree in Psychology from Iowa State University and then moved to Greenville, NC to complete my education. After recently becoming engaged and beginning to think about the possibility of having children, I began to see my internship with the Pediatric Clinic in a new light. The impatience of parents sitting in the waiting room became lost on me. More and more I noticed the day-to-day pain of parents that were helpless to improve their child’s circumstances and desperate for any assistance they could get. My biggest fear as a one-day mother is that I might fail my children. My biggest concern is that I might not prove to be a fighter that comes out better because of a challenge like this.

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Helping Couples Cope with Cancer

Posted By Laura Lynch, Maureen Davey, Tuesday, December 3, 2013
In 2013, it is estimated there will be 854,790 new cases of cancer in males and 805,500 new cases in females in the United States (American Cancer Society, 2013).  The implication is that thousands of couples will be affected by the diagnosis and treatment of cancer. Cancer is a chronic and life-threatening illness that affects not only diagnosed patients but also their partners and spouses.  Many suffer from symptoms of depression and relational distress (McClure, Nezu, Nezu, O'Hea, & McMahon, 2012).  Couple clinical intervention studies suggest that it is possible to improve the psychological and relational well-being for couples who are coping with cancer (Badr & Krebs, 2012; Regan et al., 2012). 

In collaboration with Dr. Ting Liu, PhD., LMFT at Drexel University and Dr. Lydia Komarnicky, MD who is an oncologist at Drexel University’s Radiation Oncology clinic, we recently received pilot funding to adapt and evaluate a couple support group intervention, Hold Me Tight (HMT) (Johnson, 2009) with a diverse sample of couples coping with cancer.  The "Hold Me Tight” Couple Intervention Program: Conversations for Connection is grounded in Emotionally Focused Therapy (EFT) and was developed by Dr. Susan Johnson (2009) to help couples "repair, enhance, and continually grow their love relationship” (Johnson, 2009) in small group settings. With permission from Dr. Johnson, we have integrated cancer-relevant examples and reduced the number of HMT sessions from 8 to 6 sessions, and have trained emotionally focused therapists as group facilitators for our 1-year pilot study.  Because most psychosocial couple cancer intervention studies have included primarily white middle-class samples (Badr & Krebs, 2012), we are intentionally evaluating this intervention with an economically, racially, and ethnically diverse sample of couples in Philadelphia, in order to ensure that it is effective cross-culturally.  


Partners are encouraged to connect so they are not fighting the cancer alone
We believe that oncology patients and their partners/spouses can benefit from this type of brief couple support group for the following reasons.  First, couples where one partner is diagnosed with cancer often experience less intimacy, a lack of mutual support and cohesion, and lower relationship satisfaction (Couper et al., 2006). HMT targets these relationship dynamics. Group facilitators are trained to help partners re-secure their relationship connection while coping with cancer. Specifically, therapists have been trained to help partners openly share any concerns related to the cancer diagnosis and treatment, coping, adjustment, and any feelings of loss and fear. By openly addressing their vulnerable feelings with each other, partners are encouraged to increase their connection to each other so they are not fighting the cancer alone, but together as a securely attached and emotionally responsive couple. Second, an association between a cancer diagnosis and elevated symptoms of depression in both cancer patients and their partners was reported (Kolbasovsky, 2008).  There is empirical evidence supporting the effectiveness of EFT in reducing depressive symptoms by strengthening relationship bonds (Denton, Golden, Walsh, 2003; Dessualles & Johnson, 2003). 

Third, sexual issues (e.g., libido, sexual dysfunction, body image) are common among many cancer patients (Kolbasovsky, 2008) but are often not directly addressed by providers. In our adapted 6-session HMT curriculum, one session was designed to facilitate more open communication between partners about any sexual issues. Finally, compared to couple’s therapy which may be emotionally, financially, and physically overwhelming for oncology patients who are navigating tough treatment regimens, a structured short-term support group intervention (6 sessions: 2 hours/each) may not only reduce relationship distress, but also provide social support in a more feasible and acceptable way. 

Cancer is chronic, life-threatening, and often all-consuming for patients and their partners or spouses.  Our hope is that this brief couple support group program, Hold Me Tight, will decrease couples’ distress and help them turn toward each other while coping with cancer. 

References

American Cancer Society (2013). Cancer Facts & Figures 2013. Atlanta: American Cancer Society.

Badr, H. & Krebs, P. (2012). A systematic review and meta-analysis of psychosocial interventions for couples coping with cancer. Psycho-Oncology. DOI: 10.1002/pon.3200 

Couper, J., Bloch, S., Love, A., Macvean, M., Duchesne, G. M., & Kissane, D. (2006). Psychosocial adjustment of   female partners of men with prostate cancer: a review of the literature. Psycho-Oncology, 15(11), 937-953. 

Denton, W. H., Golden, R. N., & Walsh, S. R. (2003). Depression, marital discord, and couple therapy. Current Opinion in Psychiatry, 16(1), 29-34.  

Dessaulles, A., Johnson, S.M. & Denton, W. (2003) The Treatment of Clinical Depression in the Context of Marital Distress. American Journal of Family Therapy, 31, 345-353 

Johnson, S. (2009). The Hold Me Tight Program: Conversations for Connection. International Centre for Excellence in Emotional Focused Therapy: Ontario, Canada 

Johnson, S., & Talitman, E. (1997). Predictors of outcome in emotionally focused marital therapy. Journal of Marital and Family Therapy, 23(2), 135–152.  

Kolbasovsky, A. (2008). Therapist’s Guide to Understanding Common Medical Conditions. New York: W. W. Norton & Company 

McClure, K. S., Nezu, A. M., Nezu, C. M., O'Hea, E. L., & McMahon, C. (2012). Social problem solving and depression in couples coping with cancer. Psycho-Oncology, 21(1), 11-19. doi:10.1002/pon.1856

Regan, T. W., Lambert, S. D., Girgis, A., Kelly, B., Kayser, K., & Turner, J. (2012). Do couple-based interventions make a difference for couples affected by cancer? A systematic review. BMC Cancer, 12(1), 279-279. doi:10.1186/1471-2407-12-279


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



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

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The Assumption

Posted By Lisa Tyndall, Tuesday, November 26, 2013

One beautiful sunny afternoon, my son and I walked in for an appointment with a specialist. This was an appointment that I delayed for quite some time because I was not sure if we really "needed” it, but I finally determined that coming in to talk to the doctor face-to-face was better than continuing to guess and educate myself via the internet. 

When we arrived at this particular appointment, we were greeted and asked to pay the co-pay, which was expected. What was unexpected was the patient coordinator then asking again for my card to pay for the $250 "testing” that was to be done. I said, "But this is our first appointment. I don’t even know if we want the testing. I don’t even know what the testing involves.” She responded, "Well, that is what we normally do for first appointments.” What I wanted to say was, "Not at this first appointment!” Instead I asked, "Well, is it ok for our appointment to just talk to the doctor first to determine our best treatment route? Do we have that option? I just did not plan on spending that kind of money today.” Luckily, she was kind and generous in her response, allowing me the grace to back out of the procedure. Unfortunately, it was too late for her gracious demeanor to completely smooth things over and stop my Medical Family Therapy wheels from turning, because I was already fuming at how this whole process could have occurred for another family, one who was not so bold as to say "Thanks but no thanks.”


Right there in the waiting room it happened, I immediately began ruminating about the importance of patient agency. My son could even tell something was going on, "What’s wrong Mom?” he asked. The injustice of it all, or at least how it seemed, is what disturbed me the most. So many patients may not know that they can speak up for themselves about their own treatment and that they can opt out of an elective expensive procedure. It seemed unethical to me to just assume that a patient wanted and could afford such testing without even an initial consult. 

Now with many more healthcare plans encouraging consumers to pay out of pocket with higher deductibles, instead of the co-pay system, more and more consumers are apt to begin analyzing what is really necessary in terms of medical procedures and appointments. Sounds familiar…the financial world affecting the clinical and operational world, but yet they are still not working together. For those who do not know or who are not so bold as to speak up for what they need, how many will be paying out of pocket for something without informed consent? 

I would imagine that the more empowered and competent consumers feel about their healthcare, the more likely they are to take a more active role in managing their health preventatively. As a consumer, when you respect me and my choices, both inside and outside of your exam room, it translates to reminding me that many of my health behaviors are also choices that either improve or deteriorate my health. Patient agency is one of the founding principles of Medical Family Therapy and it should be a rallying call for all of healthcare. I would argue that we should be encouraging consumers to take an active role in their healthcare. Healthcare providers can help by respecting the rights of consumers to make choices about treatment. Healthcare should be something done with consumers, not something done to consumers. If the healthcare system wants people to be invested in taking care of their health, then it needs to invest in them and the effects of their financial and operational policies.
Patient agency is one of the founding principles of Medical Family Therapy 

We did meet with the doctor that day, and I explained that we just wanted to talk before moving forward on any procedures. He was kind and understanding of my hesitation to move forward with the testing, and largely because of his kindness we will return to his office should we choose to take that route. After it was all said and done, I was reminded of the importance of making my voice heard when it comes to my healthcare choices. We can no longer afford (often literally) to be intimidated by medical lingo, white coats, and sterile surroundings. I am lucky, however, and am grateful for the skills I have learned as a Medical Family Therapist because it is those skills that I can use not only professionally, but also to exercise my voice in all future personal medical appointments. But we must remember that many others have not been privy to this kind of training and may not know how to exercise their rights as a patient. As Medical Family Therapists and as collaborative care professionals we can play an important role in making sure patient’s voices and wallets are respected and heard and these days that is more important than ever.


Lisa Tyndall is 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 her dissertation research focused on developing a consensus definition of Medical Family Therapy. She is the beaming mother of two fantastic young boys and adoring wife to her husband, Richard.

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Death to the Caregivers?

Posted By Barry Jacobs, John Rolland, Tuesday, November 12, 2013

It has been the most powerful and durable research finding and rallying cry of the family caregiving movement:  In 1999, the Journal of the American Medical Association published a study by University of Pittsburgh psychologists Richard Schulz and Scott Beach positing that stressed older adults caring for spouses with dementia had a 63% higher mortality rate than non-caregiving peers. That number, alarmingly large, stunned policymakers and politicians. Federal- and state-funded caregiver support programs were quickly developed. Ever since, the idea that family caregivers under duress have higher mortality rates has been an axiom of public health.

Now a new research finding that draws on data from the national REGARDS (Reasons for Geographic and Racial Differences in Stroke) Study challenges all that. In October 2013, the American Journal of Epidemiology e-published a study of over 3,500 stroke caregivers by a multi-institution team led by David Roth of Johns Hopkins that "failed to identify any [caregiver] subgroups [including those who were strained] with increased rates of death. " Quite the contrary: Through the use of a propensity-matched sample of non-caregivers and a proportional hazards model, they found that "caregivers had an 18% reduced rate of death compared with non-caregivers.”

The idea that being a family caregiver would confer some long-term survival advantage boggles the mind. Certainly, there are research and case studies that suggest that many family caregivers find positives, such as personal and spiritual growth, through their arduous work. The large National Alliance for Caregiving survey of caregiver attitudes in 2009 found that only about a third of caregivers described themselves as "highly stressed”; nearly a quarter said that caregiving didn’t stress them at all. But for family-oriented healthcare and social service professionals--as well as for the movie-going public who adored The Notebook, The Savages, and Amour-- the image of the beleaguered, bedraggled and bewildered family caregiver has held sway for so long that it is hard to imagine her in the rosy flush of health, vigor and longevity.

Critics of the Roth study will cast aspersions on its research design and patient selection. They will say that the stroke caregivers who were studied could not have had significant caregiver burden or were not under severe stress. They will say the participants did not caregive for long enough periods of time to be truly worn down. They will seek to launch their own research to disconfirm the hypothesis that caregivers live longer, not shorter, than the rest of us. 

"... caregiving can be a beneficial thing both for caregivers and their care recipients"
If, over time, they prove to be wrong, however, they will have to come to the conclusion that many people—possibly the majority—who make sacrifices to care for a loved one may actually find it an enriching and uplifting endeavor. Wrote University of South Florida psychologist and noted family caregiver researcher William Haley, Ph.D., the Roth study’s second author, in an email to me: "I do hope [our] paper helps the [caregiving] field attain a balance between concerns about caregiver health/well-being (which are legitimate) [and] recognizing that caregiving can be a beneficial thing both for caregivers and their care recipients.”

What would such a balance look like? It would take into account that certain individuals under certain conditions in certain relationships will languish in the caregiver role while others will outdo themselves, soaring above their usual functioning. The broad field of families and health will then need to take a deeper, more nuanced look at who will react positively and who negatively to this increasingly common and normative life task. We’ll be having discussions about the secrets of building caregiver resilience—not just through increased problem-solving and social supports but by ensuring that one has the ability to choose to caregive willingly and know it is making a significant difference to relieve a loved one’s suffering. Our clinical interventions will largely be focused on helping family members derive a larger sense of purpose and meaning as they go about the still difficult, grinding work.

Over the past 30 years, the family caregiving field has reaped attention and funding through its depiction of the dire situations of caregivers. If newer research slowly changes that carefully crafted image of the burnt out family caregiver, will it be the caregiving field that will languish in the future?  Or will the challenge to one of its foundational assumptions bring it new life?


Barry J. Jacobs, Psy.D. is the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program, a monthly columnist on family caregiving for AARP.com, and the author of "The Emotional Survival Guide for Caregivers" (Guilford, 2006).

Commentary

As Dr. Jacobs articulately describes, this is a stunning research paper with major public health implications.  Rather than debunking time-honored thinking about caregiver strain consequences, this paper opens up a new avenue of thinking that is more resilience-based.  Going forward, we can better elucidate the individual and family psychosocial factors that promote caregiver wellbeing and relationship growth.  It has always been my belief that we learn more by studying those who thrive in the face of adversity rather than those who falter.  What are the key ingredients that can promote improved prevention and family-oriented psychoeducation?  This in no way undercuts the biopsychosocial risks that caregivers and families face over time.  
We learn more by studying those who thrive in the face of adversity than those who falter

The study authors are clear that their goal is to find a better, more nuanced and balanced understanding of factors that both facilitate growth as well as those that are harbingers of caregiver risk.  They are mindful of the study limitations that require further research.  They note that this study did not distinguish caregivers of those with and without dementia, or severity of cognitive impairment.  These factors have significant implications for caregiver strain over time.  Also, they state that this study did not address caregivers facing end-of-life.  And, it is not an ethnically diverse population (e.g. Latino and Asian populations were not included), leaving many questions related to culture, such as gender roles and expectations and multigenerational traditions. 

Of major significance, beyond marital status, the study did not measure anything regarding couple or family relationship processes or functioning.  Therefore, their "subgroups” did not include family functioning as a variable. This leaves an enormous territory not addressed in this research.  Likewise, this study looked at mortality, not morbidity.  The latter involves myriad health and mental health consequences that may not bear a linear relationship with mortality.

My best hope is that this study energizes and promotes more sophisticated research regarding family caregiving with a greater emphasis on resilience, family functioning variables, and meaning-making and its health protective effects.  In turn, this has major implications for collaborative and integrated care and the vital role CFHA members can play in this area. 


John S. Rolland, M.D., MPH is Professor of Psychiatry and Behavioral Neuroscience, University of Chicago Pritzker School of Medicine; and Executive Co-Director, Chicago Center for Family Health.  He is the author of "Families, Illness, & Disability: An Integrative Treatment Model" (Basic Books, 1994) and forthcoming "Treating Illness and Disability in Families: An Integrative Model" (Guildford).

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Journey to Mindfulness - The Mind-Body Connection to Patient and Practitioner Wellness

Posted By Julia Sayre, Tuesday, November 5, 2013

My office creates a safe meeting place for my clients, and is the meeting ground for many family and individual medical/emotional challenges: cardiological; endocrinological; obstetrical; the effects of infectious disease; after-effects of TBI; alcoholism and codependency; and families overwhelmed by the challenges of their special-needs children, just to name a few. In these and many cases, I work with my clients by incorporating some form of mindfulness meditation to increase self-awareness and reduce stress.

I was first introduced to mindfulness when I returned to Virginia Tech University to work for the program from which I had completed my masters in MFT. Mindfulness was incorporated gradually into the curriculum, eventually through formal classroom instruction. As an intern in that program several years prior, my introduction to working with traumatized clients included what I came to know as a form of mindfulness practice: focusing on how the body feels to learn what is on one’s mind and weighing on one’s heart, and safely process it. Later, I received formal training in Internal Family Systems Therapy™ (IFS), an intervention that uses mindfulness and guided imagery. Eventually, as I trained for my certification in Traumatology, it appeared again, as the training incorporated IFS as well as other mindfulness practices of various sorts, creating further infusion into my training and clinical experience.


Typically, I set goals each year in my professional development, and this year I decided to increase my awareness and skills in working with wounded warriors, through an organization called Warriors at Ease (WAE). They offer a three-part training on the use of mindfulness meditation and yoga as an intervention for PTSD – increasingly referring to it as PTS and dropping "Disorder,” an unhelpful conceptualization of a survival strategy. WAE training has both yoga and mindfulness meditation tracks. As I am not a yoga instructor, I chose the mindfulness track, knowing that I wanted further training in order to lead groups.
Starting this training – I’ve now completed two of three parts – piqued my interest in yoga. I owned a home-practice instructional DVD but kept hearing about the benefits of attending a class. And hey, therapist, heal thyself! I advised many clients to try yoga, but had not yet had a formal class in it. So off I went – and it altered my perspective: you stand like a dancer, but use muscle groups like a world-class weight lifter. And those instructors could teach without breathlessness or breaking a sweat! After each class, I felt…a calm connectedness…

Somewhere in this attitude of learning, this student was increasingly ready for the teacher to appear, and I decided to sign up for a Mindfulness Based Stress Reduction (MBSR) class. Again, my thinking was that it would increase my readiness to take mindfulness-based interventions to group work with wounded warriors – and what a great form of self-care! As I write this, I am about halfway through the 8-week program. I’m creating a formal meditation practice, which is good for me. But it’s also emerging more assuredly in my work with clients.

Meditation lets them dance with their thoughts, then let them go
And so I am able to tell them that meditation lets them dance with their thoughts, then let them go (thanks to my WAE instructor for the concept!). And, I add, dancing instead of wrestling with these thoughts is a vacation from the kind of analysis and rumination that takes up so much of our energy. I am able to normalize for clients that thinking a thousand thoughts a minute during meditation isn’t wrong, yet engaging with the thoughts is unnecessary at that moment. What a relief! I can share with clients that some of their greatest creativity – problem-solving, if that’s their view – will emerge in the moments they have given themselves for that break from wrestling and rumination, and that later they will be able to re-engage with their creativity.

Experientially, mindfulness is the antidote to anxiety. The National Institutes of Health and other sources cite much research support for mindfulness interventions for physical symptom and stress relief. Focus on the breath, or on a sound or an image, improves our chances of wellness in mind and body, in terms of sleep, blood pressure, brain wave and hormonal shifts, and pain management, to name a few. And there is a 2012 study out of the University of Rochester that supports positive effects of mindfulness meditation on physicians: on increasing mindful awareness in interactions with their patients; on self-awareness; and in supportive communication with colleagues.

I have found the formal practice of mindfulness to be a paradigm shift. It has enhanced my experience of being present with clients. I am aware of more fully hearing my colleagues. My need to "jump in and do” with family or friends is tempered with more stillness and waiting. I feel profoundly secure in the knowledge – based on research and clinical experience – that my clients benefit from its practice, as well.


Julia B. Sayre, M.S., LMFT is a licensed Marriage and Family Therapist and Certified Traumatologist in private practice in the Northern VA/Metro Washington, DC area. Julie completed her Masters at Virginia Tech University, Falls Church, VA. Clinical interests include trauma, medical family therapy, and challenges to stepfamilies and families of children with special needs. Email: jbsayreLMFT@aol.com

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MedFT as Flower: Family Caregiving as Forest

Posted By Barry J. Jacobs, Tuesday, September 24, 2013


This is a post in a series of "blasts from the past". These classic posts will highlight issues that are just too important to collect dust in the archives. The series will be off and on for the next several weeks. Enjoy!

(This piece was originally posted on July 24th, 2012)

From that magical moment in the Minnesota hot tub in 1991 when Susan McDaniel, Bill Doherty and Jeri Hepworth coined the term "medical family therapy,” the field has had a slow but steady growth, sending tendrils into curricula for family therapists and other healthcare professionals and blossoming into a dozen or so certificate and degree programs around the country. For this progress, we all should be proud. But MedFT, to me, is like a delicate, hothouse orchid, assiduously watered and trimmed, surrounded by a burgeoning forest of more lush and verdant organic growth. The towering trees nearly blocking out the sun nowadays are the results of a fertile, consumer-initiated movement that took root around the same time as MedFT. That movement—now this country’s chief focus on families and illness--is called "family caregiving.”

Orchids and oaks, you say. Apples and oranges. Family caregiving, you contend, is what devoted family members do for an ill loved one; medical family therapists use systemic expertise to foster that endeavor. But while the term "family caregiving” is used to describe the sacrifices and struggles of over 60 million Americans in their provision of care to ailing relatives and friends each year, it also denotes a multi-disciplinary research, advocacy, and clinical effort with a complex infrastructure of federal, state and local support programs, disease- , relationship- and culture-specific research, and public and private funders and policy mavens.

Orchids and oaks, you say.

Apples and oranges.

All that MedFT is striving to achieve—to better understand how families are buffeted by illness and disability and can continue to develop resiliently—the field of family caregiving has also striven for and has far outgrown us.

Take research, for example. Empirical studies within MedFT are relatively few, are based on small subject groups, and have limited generalizability. In contrast, the research conducted over the past 25 years by psychologists, nurses, social workers, family physicians and others, particularly about dementia caregiving families, has been extensive, broad and deep. The original question those researchers undertook to answer—how family caregivers are affected by caring for someone with Alzheimer’s disease—has long been answered with evidence of increased morbidity (insomnia, depression, musculoskeletal problems; see Schulz & Martire, 2004) and mortality (see Schulz & Beach, 1999). These diverse researchers have also largely answered the next question—what kind of supports better help family caregivers cope (see here)—and are now working on how to translate those findings into effective public programs on the state and local levels.

Then there’s advocacy. MedFT academicians and practitioners have attempted and accomplished little in the policy arena. The powerhouse family caregiver consumer groups (e.g., National Family Caregivers Association, National Alliance for Caregiving, Family Caregiver Alliance) and other larger organizations with a strong interest in family caregiving (e.g., AARP, Alzheimer’s Association) have lobbied for and helped push through landmark federal legislation, including the Family and Medical Leave Act (1993), the National Family Caregiver Support Program (2000), and the Lifespan Respite Act (2006). Family caregiver advocates have made sure politicians know that there’s a growing constituency of Baby Boomers who want more monies earmarked for supporting their aging parents. Even in tight budgetary times, those funds have gradually increased.

The family caregiving movement’s clinical efforts might not be recognized by medical family therapists as "clinical” at all. Largely consisting of psychoeducation, screening for depression and anxiety, and providing respite care, the caregiver support programs are not particularly systemic in orientation, tending to focus on the needs of the primary caregiver. (Here’s where we have something to teach them about better harmonizing the interactions among various family members to produce better outcomes for the patient and family.) But given the widespread availability of caregiver support services, covering every county in this country, the family caregiving movement is meeting more of the basic psychological needs of the vast majority of families dealing with illness than MedFT could ever hope to achieve.

So what should all this mean for medical family therapists? A few thoughts:

  • MedFT should make every effort to become part of the family caregiving movement: That movement has been intensively collaborative, drawing on the strengths of a broad range of healthcare, legal and financial disciplines, as well as family members and patients. Yet because medical family therapists have been toiling in a few relatively isolated outposts, most family caregivers and leaders in the family caregiving field have never even heard of MedFT. I believe that the systemic expertise that we have to offer would greatly enhance the current efforts of family caregiving to roll out effective community-based programs.
  • We need to call our research family caregiving studies, not MedFT studies. Our researchers need to publish in the major journals for family caregiving, such as The Gerontologist and Aging and Mental Health. That’s how our work with be more widely recognized, disseminated and implemented.
  • We should be pitching ourselves clinically to the public and to colleagues from other disciplines on primary and specialty healthcare teams as "family caregiving experts,” not medical family therapists. This will better communicate who we are and what we do than the current identity we have. This is, in fact, truth in advertising—we are family caregiving experts!
  • Our MedFT associations—e.g., the CFHA MedFT work group and the MedFT Facebook group—should be advocating for improved services for family caregivers. We should join with dozens of other healthcare professional associations in the large and powerful coalition known as the National Alliance for Caregiving (www.caregiving.org). NAC is the single strongest voice advocating in Congress and in the academies today for the needs of families struggling with illness and disability.

In short, we need to branch out of the insular hothouse world and roam the forest. We need to cross-fertilize with other disciplines more. We need to pollinate their ideas with our own and improve their systemic understanding and efficacy. We have to trust that who we are and what we do will matter--and not just get lost in the scenery.

References

Schulz, R & Martire, L (2004). Family caregiving of persons with dementia: prevalence, health effects and support strategies, Am J Geri Psychiatry, May-June, 12(3), 240-9

Schulz, R & Beach (1999). Caregiving is a risk factor for mortality: the Caregiver Health Effects Study, JAMA, Dec. 15;282(23):2215-9

 


Barry J. Jacobs, Psy.D., Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA, has long been involved in the family caregiving movement. He is the national spokesperson on family caregiving for the American Heart Association and an honorary board member of the Well Spouse Association. Most recently, he was appointed to the Caregiver Advisory Board of AARP. He has long written the advice column for "Take Care,” the newsletter of the National Family Caregivers Association, and is also the author of The Emotional Survival Guide for Caregivers (Guilford, 2006).



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Do Medical Family Therapists Bring Value to Health Care?

Posted By Joseph Scherger, Tuesday, September 17, 2013


This is a post in a series of "blasts from the past". These classic posts will highlight issues that are just too important to collect dust in the archives. The series will be off and on for the next several weeks. Enjoy!

(This piece was originally posted on October 10th, 2012)

I suspect any family therapist reading this question would quickly say, "Yes, of course we add value to health care”. From a health care policy perspective value is not a simple intuitive concept. Value is quality divided by cost, and today every health care system is focused on becoming value driven.

That the U.S. spends way too much money on health care is well known. Our health outcomes place us low in the world even though we spend twice as much or more on health care as other industrialized countries. Our spending is not sustainable, especially in Medicare with the influx of the Baby Boomer generation. We have to figure out how to spend less money.


A new IOM report indicates that we spend 700 billion dollars in health care every year that is of no benefit to patient care. These include unnecessary tests and procedures, overly expensive drugs when generics would do fine, and excessive treatment, especially at the end of life. Rather than just squeeze this money out of the system, the potential is here for transforming the system to provide value – actually improve the quality of care while we reduce costs."The most important work
of family therapists today
is to make the case for
being vital members of
PCMH practice teams."

Information technology makes much of value driven care possible. For the first time we can look at populations of patients in detail and make proactive strategic decisions to improve their health efficiently. Diabetic patients who are well controlled are much less expensive than ones who are out of control and develop complications. Through internet applications, we can communicate and care for patients at minimal costs compared with face-to-face visits.

So what role do family therapists play in this? We know that psychosocial problems are frequent in health care and usually are masked by physical complaints. Addressing the psychosocial problems early creates great efficiency rather than waiting until every physical evaluation has been done, only to show the patient is "simply” anxious or depressed. Yet this obvious situation remains hidden from the strategic planning to too many health systems.

Regional health systems committed to becoming value-driven are joining the Accountable Care Organization (ACO) movement. Developed by the Centers for Medicare and Medicaid Services (CMS), an ACO is committed to the Triple Aim:

1. Improving the individual experience of care

2. Improving the health of populations

3. Reducing the per capita costs of care for populations

Health systems know the future of health care financing will be directly tied to achieving these aims with their care, and information systems are able to measure it. At the patient care level, teams will operate in ACOs using the principles of the Patient Centered Medical Home (PCMH). PCMH practices have advanced information and communication technologies and are able to provide continuous access to strategic, proactive care rather than the tradition of simply reacting to patient appointments. Patients become activated to play an active role in the own care, ordering desired tests and treatments, according to accepted guidelines.

The most important work of family therapists today is to make the case for being vital members of PCMH practice teams. Working alongside physicians, nurse practitioners, pharmacists and others, family therapists will ensure that patients receive true biopsychosocial care from the beginning. Independent private practice is rapidly becoming a thing of the past. Organized and integrated health systems are the future. Family therapists are not automatically included in this discussion in most settings, so becoming knowledgeable about ACOs and PCMHs is critical today. Assertive inclusion of family therapists in demonstration projects around the country is needed to ensure the proper composition of team practice in the future.

Reference for more detail on ACOs, PCMHs and the Triple Aim:

Edwards TM, Patterson J, Vakili S, Scherger JE. Healthcare Policy in the United States: A Primer for Medical Family Therapists. Comtemp Fam Ther (2012) 34:217-227. 


Joseph E. Scherger, M.D., M.P.H., is Vice President for Primary Care & Academic Affairs at Eisenhower Medicine Center in Rancho Mirage, California. Dr. Scherger is Clinical Professor of Family Medicine at the University of California, San Diego School of Medicine (UCSD), and at the Keck School of Medicine at the University of Southern California (USC). Dr. Scherger’s main focus is on the redesign of office practice using the tools of information technology and quality improvement.

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What We Do

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