Posted By Lisa Zak-Hunter,
Thursday, February 18, 2016
I overheard a family physician lament about the unraveling of family practice. It was after a long day of seeing single parent families, grandparents raising children, and endless single pregnant women. The statement was something along the lines of “A single mother and her baby are not a family. This is not why I went into practice.” I sensed frustration and disillusionment from someone who idealized caring for mom, dad, kids, and grandma and grandpa. I put my initial feelings aside and tried stepping into his shoes. A theme I kept coming back to was: how do provider definitions of ‘family’ or the ‘ideal family’ impact patient care and provider wellbeing?
Within the past few years, there has been increased discussion about both how to define family and who defines family. The Syrian refugee crisis has reignited debate over the laws that govern and programs that service immigrant, refugee, and undocumented families. It has also highlighted how families are torn apart in times of war and conflict, leaving them grappling to redefine themselves. Gay marriage has also been legalized in our country more recently, and there continue to be discussions about its legality and morality. Family structures have changed in other ways as well. Births to older women are on the rise and overall birth rates are low (Howe, 2015; Matthews & Hamilton, 2014). Statistics also indicate that approximately 60% of children live in a family with married parents where at least one works. The other 40% live with single parents, grandparents, a parent and their significant other, or other situations (Council on Contemporary Families, 2012). In 2012, the chances that two children selected at random would share the same family constellation was just under 50%, compared to about 80% in 1960 (Council on Contemporary Families, 2012). In other situations and within certain cultures, family members may not be blood relatives but close friends. At this point, it is challenging to identify the ‘typical American family’ because there is no dominant family form (Council on Contemporary Families, 2012).
If there is no dominant family form, how do we provide family healthcare? How family is legally defined in healthcare influences treatment. We are reminded of this as non-legal significant others or non-legal parents have a more difficult time obtaining information and making treatment decisions for minor patients or unresponsive loved ones. They are not considered next of kin, and proper paper work needs to be in place to ensure communication with healthcare providers. How we address these ethical and legal issues could be a blog post in itself!
Perhaps most relevant to the physician’s comment… how much do providers’ personal definitions of family influence care? In February 2015, a news story came out about a pediatrician who declined to treat a lesbian couple’s baby. According to the note the physician sent the couple, she feared she would not be able to establish a good doctor-patient relationship the way she normally does. She did not elaborate whether this was due to the couple’s sexual orientation, but many believed it did. The story raised questions about how the physician handled the manner, and whether it was appropriate, moral, and legal. Assuming the concern was over the morality of their family structure, what would have happened if the pediatrician HAD chosen to work with that family? How could her beliefs influence care? What about the family physician I overheard who was frustrated that the families he treated did not fit his definition of family? Did he take a subtle tone of frustration or disapproval into the room? Did he spend less time with those patients?
Conversely, did he spend more time out of possibly misplaced fear about children’s well-being in a ‘broken home’? Sometimes a provider views the family as ‘un-whole’ or ‘broken’ and may treat members with pity or attribute their concerns to their ‘brokenness’. At that point, the provider has decided to define the family’s value based on personal biases and assumptions instead of the patient’s perspective and circumstances. If a single mother chooses to be single because she can keep her children safe or hold a higher paying job, the family may not need pity or additional resources. A well-intentioned provider may react without knowing the family’s story or integrating the family’s perspective into treatment.
One way to address assumptions and biases is during training. Across the nation, medical students and residents learn algorithms, evidence-based medicine, procedures, and standards of care. They learn how to assess, diagnose, and treat. Self-reflection becomes secondary, tertiary, or non-existent. Especially for those who plan to work with families, reflection ought to be structured into their training. Providers should be able to identify ways to address family concerns or structures they find questionable and be aware of how their treatment of these families may be subtly different. At the very least, there should be a willingness to be open and vulnerable and to wrestle with these questions. There should be safe places built into curriculum for this exploration. Practitioners are human. They hold a variety of beliefs and definitions of family. They are also accountable for providing quality family-centered care.
At the end of my day, I heard something that made me smile. A resident who was opposed to premarital sex visited with a scared, newly pregnant, unwed teenage couple. In both her check-out with the preceptor and in the room with the patients, she remained respectful, family-centered, and encouraging. The physician said to the couple “A baby doesn’t see teenage parents. Baby sees mom and dad. Be that mom and dad.”
Lisa Zak-Hunter, PhD, LMFT is Behavioral Science Educator/Clinical Assistant Professor at the University of Kansas School of Medicine-Wichita at Via Christi Family Medicine Residency. Her main clinical, teaching, and research interests lie in the realms of collaborative health care, increasing biopsychosocial understanding of mental and medical health conditions, and practitioner self-care. She has a particular interest in adult eating disorders. Within CFHA, she co-edits the Families and Health Blog and serves as Social Media Director.
Posted By Marianne McPherson,
Thursday, February 4, 2016
100 Million Healthier Lives is an unprecedented collaboration of change agents across sectors who are pursuing an unprecedented result: Mission: 100 million people living healthier lives by 2020. Our vision is to fundamentally transform the way the world thinks and acts to improve health, well-being and equity to get to breakthrough results. Together, we are systematically creating a community of solutions to the most intractable challenges that stand in the way of achieving health, wellbeing and equity across the globe. Our theory of change follows:
Unprecedented collaboration + innovative improvement + systems change to remove barriers = 100 million people living healthier lives by 2020.
Our 700+ members have signed on because we believe the time is right for a major leap forward in the creation of health, wellbeing and equity. The rising tide of chronic disease, an aging population, structural inequity in health outcomes (despite advances in health care), and technology demand a fundamentally different approach, one which brings us together across sectors to address the physical, social and behavioral contributors to health together.
What’s more, all members of 100 Million Healthier Lives agree to adopt five following core principles in our work together. Several of those resonate strongly with the founding principles of CFHA of collaboration and family-centered care:
Partner deeply and respectfully in the process of creating change with people, organizations, and communities.
Promote equity, justice, strength, and wholeness in the process of creating health.
Adopt a humble posture of learning and improvement that acknowledges the importance of both stories metrics that matter.
Intentionally work to remove barriers in critical areas (e.g., payment reform, spread of good ideas) through intentional collaboration with traditional and nontraditional partners.
Make the way we work an example of what’s possible.
We set an audacious goal of 100 million healthier lives precisely so that there was a goal so big that no one organization or community or stream of work could achieve it alone.
A key priority in the movement to is to shift culture and mindset to one of partnership, co-design, and wellbeing. Some examples:
·Partnership means that, for example, we have shared leadership and decision making at every level of the initiative. We believe that everyone holds a unique and important piece of the puzzle in creating health. We are committed to seeing how those pieces fit in different combinations, letting go of the pieces we hold to combine them in innovative ways.
·Co-design means that we are workingwith rather than for communities. We are working to create 1000 “communities of solution” around the world, believing that sustainable change for health, wellbeing, and equity, will come when communities, themselves are full partners in the work, when they set meaningful goals rather than having goals set for them. The 61 communities in the SCALE and Pathway to Pacesetter initiatives are working in multi-sector teams and using improvement science techniques to test and learn their way into their community’s health goals.
Wellbeing means that we define and measure health as broader than physical health to include physical, mental, social, and spiritual wellbeing. The importance of integrating mental health into primary care resonates deeply with our work and goals, including a stream of work aimed to “make mental health everybody’s job.”
We have organized work by focusing on the following “9 Whats and 9 Hows":
Close equity gaps – this is “the “price of admission” in 100 Million Healthier Lives
Help veterans to thrive
Address and improve social determinants across the continuum
Improve wellbeing of indigenous communities
Help all kids have a great start to life
Make mental health everybody’s job and take a prevention approach
Engage people in their own health (nutrition, exercise, sleep, stress, food security)
Improve employee health and wellbeing
Create wellbeing in the elder years and end of life
Shift culture and mindset to one of partnership, co-design, and wellbeing.
Develop the health workforce
Elevate peer to peer approaches
Build improvement capability at the community level
Use chronic diseases and risk factors to build the health continuum
Improve high quality primary health care access for all
Integrate data across siloes (health care, community, public health, social services)
Create new financing strategies
Transform health care to be great at health and great at care
The movement is more than words and ideas, it is coming to life around the world in everyday action. The story below is from the online community—anyone is free to join the community and share stories about a recent success partnering with high school youth in Algoma, Wisconsin, shared by Teal Vanlanen:
Through the recognition of our Live Algoma work, our local high school received a $5000.00 Hands-Only CPR kit from the American Heart Association and Bellin Health. The students were tasked with "being creative" in using this kits - I think they went above and beyond creativity!
The students decided to partner with Live Algoma because "Live Algoma is by us and for us," they said. As a result, we presented our Driver Diagram, our AIM, and how to complete a PDSA [improvement science tools]. The students were thrilled. We told them to start small and SCALE up in the community.
For their first small scale test, the students wanted to train Hands Only CPR to members of our community at two local basketball games (basketball is a huge draw in our community). They were aiming for to train a minimum of 20 people per game; they trained 130!
How are they planning on SCALING up in our community? Wait until you hear this: next semester they are developing a class where they can go out to local businesses and train all of the employees on Hands Only CPR. Then, they will meet with the local government, school administrators, and local business owners to share their data and convince them to make system and policy changes within their organizations to require all employees and students (grades 7-12) to be trained in Hands Only CPR each year.
Thank you for the opportunity to share our voices on your blog. We invite you to join with us via www.100mlives.org; you can join the movement, register for monthly momentum calls, visit our map of the movement, and share your stories. Thank you for all you do to improve health and wellbeing!
Marianne McPherson, PhD, MS, is Director, 100 Million Healthier Lives Implementation at the Institute for Healthcare Improvement. Her responsibilities include developing and implementing new programs; building external partnerships; and supporting a culture of unprecedented collaboration, innovative improvement and system transformation to support 100 million people worldwide leading healthier lives by 2020. Marianne received her MS in Public Health from Harvard School of Public Health, her MA in Women’s and Gender Studies from Brandeis University, and her PhD in Social Policy from the Heller School at Brandeis University. Connect with her directly email@example.com(email),www.100mlives.org(web), or @MariannePhD (Twitter).
Posted By Thekla Brumder Ross,
Monday, January 25, 2016
As I look out over the Arizona desert at Saguaro cacti glistening in the crisp morning sun, I ponder the life of a desert caballero. Of course I have my own set of assumptions about what a desert cowboy might look like with his/her sun-painted leather skin, blue jeans, bolo tie, silk neck scarf and felt cowboy hat. These images are based on what I have been exposed to in my life or absorbed in our media-cluttered world; they are my stereotypes. My husband and I fantasize about the cowboy’s “simple life” on horseback as we both attempt to tackle the challenges of integrated care in our work lives back home in Colorado. However, this imaginary cowboy dream got me thinking: Do I really know what it is like to be a caballero? Do I truly comprehend the ins and outs of a cowboy’s day?
Contemplating how stereotypes impact my thoughts, feelings and behavior, I am reminded of the Providers Share Workshops created by Jane A. Hassinger, Lisa H. Harris, Lisa A. Martin and Michelle Debbink at The University of Michigan to help explore the experiences of people around the world who provide safe abortion services.1The Provider Share Workshop was designed to both support and study the experiences of abortion providers and to lessen the burdens of stigma for providers.
Sadly, we live in a world today where stereotypes and stigma not only shape our perceptions, but also strongly influence the national healthcare dialogue. Abortion providers are one example of a highly stigmatized group silenced by stereotypes and judgment. Abortion providers live in a world of harassment, hate mail, and violent language surrounding the care they provide. The most recent shootings that occurred outside of a Colorado Springs Planned Parenthood clinic this past November highlights the ongoing threat of violence focused on abortion providers. It has been over 40 years since the Supreme Court’s decision to legalized abortion in Roe vs. Wade, yet abortion providers often still work in a cloud of silence.
As a facilitator of Provider Share Workshops I learned about how abortion providers rarely feel comfortable disclosing their professional reproductive health work to neighbors, friends and even family. In order to keep at it--providing the high quality comprehensive reproductive healthcare in a safe and supportive environments-- many abortion providers report “a walling off” from fellow colleagues, family and friends. Their silence is associated with disproportionally higher rates of attrition (compared to their primary care counterparts) despite decades of stable abortion rates. Additionally, the number of abortion providers has declined in the US because fewer and fewer hospitals provide abortion care.2 Harris et al. explain these dynamics as the “legitimacy paradox”.3One would think that because we don’t talk about abortion that it is rare, when in fact about half of American women will have an unintended pregnancy, and nearly 3 in 10 will have an abortion, by age 45.4-5
Jane A. Hassinger, Lisa H. Harris, Lisa A. Martin and Michelle Debbink at The University of Michigan have referred to abortion care as a kind of socially stigmatized ‘dirty work‘ that can both positively and negatively impact providers. In facilitating Provider Share Workshops in North and South America I have been given a snap shot of the palpable stigma that harms the future of safe reproductive care in our society. The stigma of abortion doesn’t just impact the women who seek care, but it impacts the lives of the courageous providers who show up to work daily to ensure that reproductive healthcare is accessible to all. While facilitating these workshops I have witnessed the processes by which stigma, prejudice, discrimination, criminalization and misrepresentation of reproductive healthcare providers are acknowledged, deconstructed, and resisted. By creating a safe space for sharing and exploring abortion provider experiences, this type of provider support acts as a form of stigma management. Like most support groups, the Provider Share Workshop fosters interpersonal connections that help alleviate many of the burdens of abortion stigma.
What makes Provider Share Workshop unique is that it provides a space to develop hope for silenced providers through different medium then transactional daily interactions. The activities in the workshop collage-making, sharing stories of memorable patients, and exploring the challenges of disclosure create a vehicle of expression for the men and women who provide safe abortion care. The space created by the artistic expression of these exercises gives voice to the individual and collective silence surrounding abortion care. As a facilitator of these workshops I am honored to support abortion providers, and I am humbled by the courage they demonstrate daily to provide safe and high quality care. I am also challenged to envision other ways in which we can fight stigma and silence.
As my cowboy dream fades away while watching the desert shadows move in the morning light, I am reminded that we have a long ride ahead in our efforts to breakdown the stereotypes and stigma which plague reproductive healthcare providers. I invite CFHA readers to explore their own internalized stigma regarding abortion care and contemplate how these stereotypes may impact the care of their patients and collaboration with fellow reproductive healthcare providers. Take a moment and imagine if we lived in a world where abortion providers were given as much respect as surgeons, oncologist and family medicine providers; maybe our patients would experience fewer stigmas and more opportunity to access safe reproductive care. Abortion is in fact one of the safest common surgical procedures for women in the United States.2 Maybe abortion services would take their rightful place on the continuum of reproductive choices and reproductive health services for women around the world.
Thekla Brumder Ross, PsyD is a bilingual Behavioral Health Clinician at Kaiser Permanente’s Care Management Institute and Northern California’s Division of Research. She has worked for the Care Management Institute since 2014 and Northern California since 2009. Prior to joining Kaiser Permanente in 2009, she received a Bachelor of Arts in psychology from Colorado College in Colorado Springs, CO and her Master and Doctorate degrees from the California School of Professional Psychology in San Francisco, California. She has also completed additional training in integrated behavioral health consultation and management from the University of Massachusetts Medical School. Dr. Ross facilitates Provider Share Workshops domestically and internationally in collaboration with Planned Parenthood Federation and The University of Michigan.
1.Harris, L.H., Debbink, M.P., Martin, L.A., Hassinger, J.A.Dynamics of stigma in abortion work: findings from a pilot study of the providers share workshop.Soc Sci Med.2011;73:1062–1070([doi:16/j.socscimed.2011.07.004.]
2.Guttmacher Institute. An Overview of Abortion in the United States. January 2014
3.Physicians, abortion provision and the legitimacy paradox. Lisa H. Harris; Lisa Martin; Michelle Debbink; Jane Hassinger. Contraception. 2013;87(1):11-16
Posted By Administration,
Monday, December 14, 2015
As the New Year lurks around the corner, we’d like to take an opportunity to announce the Families and Health Interest Group (FHIG)’s plans for the coming year and introduce the new leadership.
Grow and Diversify our Membership. Leadership is committed to recruiting our colleagues in medical professions and non-family therapy behavioral health providers. We are performing targeted outreach to specific professionals we know share our value of families in healthcare. In tandem with this, the editors of the Families and Health Blog have made plans to include more bio-medically oriented authors. We encourage our SIG members and readership to also reach out to non-behavioral health providers. Dr. Froude has a recruitment letter, if that would be helpful.
CFHA 2016 Conference. Similar to 2015, the FHIG is dedicated to putting the family at the center of healthcare and are working towards including this in the 2016 CFHA conference. We have identified specific ways to highlight families for the 2016 conference, including family centered themes and calls for proposals/posters.
Website Improvements. Our intention is for the website to be more useful and resource-full. Therefore, we are compiling lists of family-oriented research and clinical tools. We ask that members submit them so we can have a wonderful resource page. Additionally, we want to promote increased collaboration among members and further mentorship for our early career professionals. We ask that each member submit a short bio, as well as clinical and research interests. If you know of good tools or are submitting a bio, please send them to Drs. Zak-Hunter and Lynch for inclusion on the website. The deadline for everything is Jan 22nd, 2016.
Webinars. We are hosting 2 webinars this year- one in February and one in June.
Early Career Membership Mentoring. We recognize that our early career professional membership is growing. To address this need, we are working to update our website with internship and mentorship opportunities in addition to the other website improvements.
Interested in Joining Us in 2016?
Open calls: 3rd Friday of the month, quarterly. 10am PT/1pm ET.
Maureen Davey, PhD, LMFT is a family researcher, licensed marriage and family therapist, AAMFT approved supervisor, and an associate professor at Drexel University’s Department of Couple and Family Therapy in the College of Nursing and Health Profession. My work focuses on helping children, couples, and families cope with illness. I am currently developing and evaluating couple and family prevention programs for diverse populations who are coping with parental illness (e.g., African Americans families coping with parental cancer), and illness in a partner/spouse (e.g., cancer treatment and survivorship in a partner/spouse).
Laura Lynch, PhD is the Collaborative Healthcare Clinical Practice Educator in the Department of Couple and Family Therapy at Drexel University. She completed the Families, Illness, and Collaborative Healthcare Fellowship under Dr. John Rolland at the Chicago Center for Family Health, and recently co-authored the book, Helping Children and Families Cope with Parental Illness: A Clinician’s Guide. Her research focuses on the development of systemic interventions to help couples and families cope with chronic illness.
Immediate Past Chair
Kaitlin Leckie, PhD, LMFT is the Director of Behavioral Health Education at Southern Kaitlin Leckie, PhD, LMFT is the Director of Behavioral Health Education at Southern Colorado Family Medicine Residency. She earned an Advanced Specialization in Medical Family Therapy, co-sponsored by the University of Colorado School of Medicine and St. Mary’s Family Medicine Residency in Grand Junction, Colorado. She obtained her doctorate and Master’s of Science in Marriage and Family Therapy from Texas Tech University. She is a founding leader of CFHA’s Families and Health Special Interest Group and is a Clinical Fellow of the American Association for Marriage and Family Therapy. Dr. Leckie has conducted research on the multifaceted relationships between health activation, social support, overall functioning, and the use of healthcare services among high-risk patients. Her many interests include Adverse Childhood Experience (ACE) assessment and intervention, self-care and wellness among clinicians, and family-centered health care.
Lisa Zak-Hunter, PhD, LMFT is Behavioral Science Educator/Clinical Assistant Professor at the University of Kansas School of Medicine-Wichita at Via Christi Family Medicine Residency. Her main clinical, teaching, and research interests lie in the realms of collaborative health care, increasing biopsychosocial understanding of mental and medical health conditions, and practitioner self-care. She has a particular interest in adult eating disorders. Within CFHA, she co-edits the Families and Health Blog and serves as Social Media Director.
Early Career Representative
Cameron Froude, PhD is a postdoctoral medical family therapy fellow at St. Mary’s Family Medicine Residency in Grand Junction, CO. Cameron is a licensed marriage and family therapist and recent graduate of the University of Connecticut’s doctoral program in human development and family studies. Her clinical interests include working with individuals diagnosed with chronic health conditions and their family members. As a psychosocial health researcher, Cameron’s focus is on understanding the role of medical and social support systems in individuals’ recovery from chronic illness.
CFHA Board Member
Randall Reitz PhD is the Director of Behavioral Sciences at the St Mary's Family Medicine Residency in Grand Junction, CO. In this role he trains medical residents and medical family therapy fellows. His roles with CFHA have included Executive Director, Board Member, and Founding Chair of the Families and Health Interest Group. His professional interests include professional development, mentorship, and trans-disciplinary training.
Posted By Rachel L. Hughes,
Monday, November 23, 2015
Would you believe that I’m starting my second year as a Medical Family Therapy (MedFT) doctoral student and the first time I heard of MedFT was a little over two years ago? During my very first practicum class, a second year doctoral student enthusiastically recounted some of her experiences as a medical family therapy volunteer in the Health Resource Center (HRC), a free community clinic managed by medical students. I immediately volunteered hoping to get my first taste of what medical family therapy meant.
Knowing little more about integrated health care than the name, I dove headfirst into a collaborative experience with medical students also trying to learn about integrated health. When I first started volunteering, the HRC was set up with medical care, optometry, physical therapy, nutrition, and mental health services (clinical psychology and medical family therapy), sharing little but a location amongst them. Now, MedFT is a part of lead student professional planning meetings, preceptor meetings before clinics, and an active voice in the future direction of the HRC. Getting to this point was not an organic, natural, or even comfortable process to start but was well worth the blood, sweat, and tears put into it.
What Wasn’t Working
· Mental health professionals were pigeonholed, specifically with social work at this site. Medical family therapy volunteers had defined their home as in the social work office because 1) the social worker was an amazingly kind woman and 2) medical students looked at the volunteers as though they had three heads when attempting interaction.
· Different screening forms were used with different mental health professionals. Because psychology and medical family therapy alternated weekends at the HRC, the medical students in charge of the intake paperwork at the clinic had to switch between sets of mental health screening forms (and really struggled with remembering which forms for which professionals).
· The lead medical students in charge of the clinic could barely recognize the medical family therapy volunteers, let alone describe the span of services provided. Most bruising to my new professional ego was the fact that I would enter the clinic week after week, check in with the lead medical student of the day, and be met with a blank, unrecognizing face.
What Has Changed For the Better
The increase in integration was not because of the singular effort of medical family therapy, which would have been near impossible since the clinic was first and foremost a medical clinic. Because the medical student leads pass the torch to new leads every March, being involved from the very beginning with the new leads really helped increase the buy-in to MedFT services.
· Increasing proximity to medical students. Instead of limiting location to the social work office, MedFT volunteers make more noticeable appearances by attending preceptor meetings and giving elevator speeches reminding medical students of the services offered. In lulls at the clinic, MedFT volunteers often socialize with the medical students, checking in on how the medical students and patients are doing. Social conversations have often opened the door for medical students to ask more in depth questions about MedFT services.
· Collaboration of mental health services to create a shared intake form. To reduce the confusion of front desk volunteers, psychology and medical family therapy has reevaluated the efficiency of two discrete forms and were able to work together and create a shared screening form that was effective for both services.
· Welcoming the new leads and efficiently disseminating information about medical family therapy services. You catch more flies with honey than vinegar. This was also true in the integration process. Being friendly and sociable with the leads allowed for receptive ears when speedily describing the services medical family therapy volunteers could offer. Focusing on how medical family therapy were also invested in the physical health of the patients at the clinic even further increased receptivity of the leads.
· Creation of an interdisciplinary "lead” board. To address the lack of communication between different services, a group of lead students from each profession in the Health Resource Center was established. The board communicates about difficulties in disseminating services, brainstorms about ideas that might increase collaboration, and shares in the successes of the Health Resource Center.
What Might Not Change (and That’s Okay!)
· Lack of direct referrals from the medical students. As lovely as it would be to have an eager medical student walk up and say, "I think I have a patient that could benefit from your services,” this is probably a lofty goal at best and unrealistic. Since medical student turnover at the clinic is so high (few students come for more than two weeks a semester) and the current structure of the clinic does not allow for unplanned MedFT visits, the focus of intervention has and will continue to be with the lead medical students that are at the HRC regularly.
· Cohabitation of medical family therapy and psychology. Even though both groups of volunteers offer different services, the space in the clinic is so limited that an office exclusively for one set of mental health volunteers is not guaranteed. To make both services accessible to the community, medical family therapy and psychology collaborate on scheduling and alternate weekends in the clinic.
Despite being a complete novice in the field of collaborative care, I have seen (and advocate for) a huge shift towards greater integration at the Health Resource Center in a single year. I have learned to celebrate the successes and not to sweat the things that didn’t turn out exactly how we were hoping. Not every healthcare system is meant to be fully collaborative because certain parameters (e.g., high employee turnover or space constraints) simply will not allow for it, but level of collaboration is not necessarily a measure of effectiveness. Mental health and medical professionals should not be discouraged by imperfect collaboration. Take it from a total amateur, the smallest changes can make a world of difference in how we practice together.
Rachel L. Hughes, MA, PLMFT is a medical family therapy doctoral student at Saint Louis University. She received her MA from Appalachian State University in Marriage and Family Therapy and graduate certificates in expressive arts therapy and addictions counseling. Her current research interests are medical outcomes of foster children, utilizing play therapy in medical settings, and adverse childhood experiences.
Posted By Barry J. Jacobs,
Friday, November 6, 2015
This post is a reprint of a piece from AARP. Click here for the original piece. Reprinted here with permission.
In the spring of 2010, 15 years after my mother and stepfather had moved to a South Florida golf community for the good life, it became apparent that they were bankrupt and struggling. My stepfather had advanced dementia. My mother was hobbled with chronic back and knee pain. After conferring with my wife, we invited them to move into an apartment a mile from our home in Swarthmore, Pa., so that we could provide ongoing help to them for as long as they needed it.
I wasn't totally naive about the challenges of becoming a caregiver. At age 14, I had watched my mother serve as my father's caregiver during the year he was dying from brain cancer. As a clinical psychologist, I had specialized for 20 years in counseling families who were caring for chronically and seriously ill loved ones. I also had written a popular book on caregiving for aging parents. But now it was my time to walk the walk and show that I actually have the expertise I claim for myself.
Five years later, much has happened. My stepfather eventually had to be placed in a dementia unit and later died. My mother became frailer and was diagnosed with dementia herself. I've been to the emergency room with one or the other of them a dozen times for falls and changes of mental status, bleeding and suspected strokes.
Like many caregivers, I've experienced the maddening lack of communication and coordination among doctors, therapists, home health aides, pharmacists and nurses, but have also encountered many kind, helping professionals along the way who tried their utmost to provide us with guidance and comfort. Even though I pride myself on being ever-empathic with my patients, I've come up against the limits of my own kindness in my interactions with my family members. In truth, I can be curt and demanding with them at times.
Despite these lapses, I have hung in there with caregiving far longer than I thought I would or could. When I think of other caregivers I've known who've provided care for twice as long as I have with half as much strain or complaint, I can only marvel.
My mind has always been a kind of jukebox, recalling songs with lyrics that have pertinence to what I'm experiencing in the present. In honor of National Family Caregivers Month, here are some classic hits and insights that have occurred to me recently as I've tried to make sense of my caregiving years.
"Tired of Waiting for You" (the Kinks): I like being on the go, vrooming through life at a breakneck pace. But caring for an aging parent has been like abruptly going from fifth gear to second; I've suffered rapid deceleration. Whether during the 45 minutes it takes my mother to eat a meal or the hours necessary to get her out of bed, groomed and dressed in the morning, waiting for her has been a particular torment. I am prone to impatiently trying to speed her up with pressed encouragement. She resists and complains that I'm always rushing her. To prevent us from forever being at odds, I've had to consciously slow myself down, taking deep breaths and paying closer attention to the moments we're together. I'm aware that I have to savor these moments when my mother and I are both calm and reasonably content because there's no guarantee she'll be here tomorrow.
"You Can't Always Get What You Want" (the Rolling Stones): The best-laid plans go awry. As much as I strategize about getting my mother in and out of her doctor's office as quickly as possible, I have no control over the flow of his appointments that day. For all the environmental safeguards I've put in place, I can't prevent my mother from occasionally falling. Effective caregiving, I've learned, is about living the lessons of the Serenity Prayer and flexibly responding on the fly to any and all problems that arise. Mick Jagger was right when he sang that, if you can't get what you want, then "you get what you need" — not the timely, efficient, perfect provision of care, but muddling-along, doing-the-best-we-can-under-the-circumstances, still-loving care.
"Takin' Care of Business" (Bachman-Turner Overdrive): Most caregivers establish rote routines of washing clothes, doling pills and scheduling appointments that efficiently keep them on track each day. This is the workman-like "taking care of business, every day, every way" that Randy Bachman sang about. But when caregiving becomes a matter of checking the boxes on automatic pilot, it raises the risk that ailing loved ones are viewed as simply sources of chores. I've learned that it is easy to fall into robotic caregiving — doggedly and unthinkingly doing what needs to be done — and to thereby lose the emotional connection with my mother. Taking care of business should never trump being present and attuned.
"Running on Empty" (Jackson Browne): I've counseled family caregivers for years about the importance of replenishing themselves through eating and sleeping well, maintaining important relationships and just relaxing at times. Otherwise, depletion and demoralization set in. For me, though, this has certainly been a case of "do as I say, not as I do." It has been too easy for me to justify taking care of one more task for my mother and to forego my own needs. I've come to realize that this stems directly from my sense of guilt: How can I run off to have fun if my mother is stuck in her apartment, sometimes alone and lonely? But a life without any fun makes me a cranky caregiver. When I play basketball or see a movie, nap or read, I put energy back in my tank and then have more to give.
"With a Little Help From My Friends" (the Beatles): I mean the word "friends" in the broadest sense — old chums, new acquaintances and close family members, but also caring neighbors, reliable aides and trusted health care professionals. Caregivers need many helping hands providing many kinds of help. In truth, I'll take any assistance I can get for my mother, from driving her to appointments to picking up groceries for her. About this, I have little guilt because I'm juggling way too much most of the time. I'm delighted whenever I can hand a few balls off. I've also learned that it doesn't work to wait for others to volunteer to help. Even the most well-intentioned friends are wrapped up in their own lives. When I make specific asks to particular people, those true friends usually step up.
"Try a Little Tenderness" (Otis Redding): I often tell caregivers that there is a difference between loving the person you're caring for and loving caregiving. The latter entails many unpleasant tasks, including helping with toileting and abundant laundry and forever going on one more pharmacy run. As a caregiver often encumbered with these kinds of tasks, I can get testy. My mother can, too. It's hard for her to be on the receiving end of care and to feel diminished.
Because we're partners in this together, my mother and I, we need to be good to one another by drawing on the positive feelings that are there in our relationship, including love, appreciation and respect. Or, in the words of the great singer Otis Redding, we need to speak and act with one another with tenderness.
Barry J. Jacobs, Psy.D. is a clinical psychologist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the author of The Emotional Survival Guide for Caregivers—Looking After Yourself and Your Family While Helping an Aging Parent (2006, Guilford)
Posted By Stephen Mitchell,
Wednesday, October 21, 2015
This piece is a reflection on the third plenary session at the 2015 CFHA Conference in Portland, Oregon. Click here for a summary of the session.
I sit in a tree-canopied park bright with green grass and kissed by the wetness of Portland rain, recalling all that just happened at the 2015 CFHA Conference. A song by the Wailin’ Jennys accompanies me. The lyrics fill my spirit…
“This is the sound of voices two, the sound of me singing with you
Helping each other to make it through, this is the sound of voices two
This is the sound of voices three singing together in harmony
Surrendering to the mystery this is the sound of voices three.”
I came to the park following a plenary presentation a group of my colleagues from St. Mary’s Family Medicine Residency gave at the annual CFHA conference. We each shared personal narratives about dying and death. I recounted the lived experience of my son Bo dying at 14 weeks old. I told this story with some trepidation because the biomedical view of miscarriage does not classify this type of pregnancy loss as a death. I did not know how or if my experience would be acknowledged. My humble question to the audience and really to the biomedical worldview was “Can I call this a death?”
My personal experience of saying these words and the words that followed, as well as my impression of the audience’s subsequent response, is what I am trying to decipher on the park bench with the Wailin’ Jennys. Tears travel down the landscape of my cheeks and I find myself whispering, “I told your story today Bo, I gave you a voice.”
Erin, my wife, presses into my consciousness and I imagine our two voices joined together trying to help one another through the devastation and gut-wrenching pain Bo’s death brought. Bo also steps into my imagination and I feel my head lift to the sky, my eyes gaze into the upper limits of the trees, and I hear Erin’s, Bo’s, and my voice. Our voices three came together in harmony during the plenary and spoke of the mysterious agony that travels with loss.
Yet, we did not just speak of the agony but also the mysterious beauty that is birthed in loss. It is not a beauty that is sought after or even wanted but it is a beauty that unites and binds hearts together in unspeakable ways and an indestructible relationship. This beauty needs a voice. After the plenary many people expressed immense kindness to our whole group and me. Those who had been specifically touched by miscarriage poured forth gratitude that space had been given to this silent and often unrecognized loss.
Miscarriage is not a loss for all who experience it, but it is for many. As I continue to reflect on my experience and the response from the audience, I have come to understand that something powerful took place. I had the honor to bear witness; to give voice to what has been lost. I did this for my wife, my son, and myself but I also did this for those present who had been changed by a miscarriage.
As physicians and psychotherapists we encounter patients who are physically, emotionally, and spiritually in pain. In my work as a therapist, I have come to believe so much of this pain comes from losses that have never been given a voice. Rather, patient’s wrestle to hold their losses within and their bodies, hearts, and spirits suffer as the pain festers. Loss must have a voice or it will rule every facet of who we are.
Giving voice to loss does not lessen it but it does allow us to bear its burden with a community. My personal pain due to Bo’s death did not diminish by speaking at the plenary. In fact my heartbreak seems to have grown but this is not a heartbreak I bear alone. I see the faces of my wife, Bo, my two sons, and the faces of those at the conference. We have all born witness together and I am overcome with the agonizing beauty present in this reality. What was lost has been given a voice so that it is recognized as real and may never be forgotten.
What strikes me in this process is the inter-subjective nature. My son Bo is made real through recognition but also I am made real. When others bear witness to our losses we know that we exist. This is a powerful manner in which to give dignity to each patient we encounter. So, as you meet with your patients this week perhaps you can ask yourself, “How can I invite this patient to give voice to their losses? What losses have they had? How can I stand with them as one who bears witness?”
Stephen W. Mitchell, Mdiv, MAC, LPCis a doctoral candidate in Saint Louis University’s Medical Family Therapy Program. He completed a medical family therapy fellowship at St. Mary’s Family Medicine Residency in Grand Junction, CO. He is a Licensed Professional Counselor in both Missouri and Colorado. Currently he is completing his dissertation, which is a qualitative inquiry into a couple’s experience of miscarriage. He is a Clinical Supervisor at Jewish Family and Children’s Service in St. Louis, MO and spends most of his days listening to patient’s stories, writing a dissertation, and wishing he had his own DIY Network series. His research interests are pregnancy, pregnancy loss, birth, and trauma’s impact on physical/psychological health.
The Families and Health Blog welcomes you to the 2015 annual conference of the Collaborative Family Healthcare Association! We have prepared this post of suggested concurrent education sessions for conference attendees who are interested in a special focus on families and health. There is a PDF copy attached at the end of the post
Integrated and Collaborative Care Practices for Teaching Pain Management Treatment
(Emilee J. Delbridge, PhD, LMFT; Dan S. Felix, PhD, LMFT; Derrick Hasenour, MD; Ankush Goyal, MD)
A1a Friday, October 16, 2015 – Period 1 –10:30 AM (40 minutes)
“Physicians and behavioral healthcare providers work collaboratively in a Chronic Pain Management Clinic at our Family Medicine Residency, with a dual focus of caring for patients with chronic pain and providing educational opportunities for residents and other healthcare trainees. We will discuss our specific approaches which support the educational and patient/family care goals of the clinic. We will provide data about the clinical and educational outcomes in the 18 months of the clinic's existence.”
Less Suffering, More Living: Integrated, Behaviorally-Informed Approaches to Adult and Pediatric Palliative Care
(David Nowels, MD; Jackie Williams-Reade, PhD, LMFT; Barry J. Jacobs, PsyD)
A1b Friday, October 16, 2015 – Period 1 –11:20:00 AM (40 minutes)
“Palliative care is increasingly being regarded as an essential element of humane, patient-centered, and economical healthcare. Yet its focus on reducing suffering is often resisted by patients, family members and providers who equate it with giving up and accepting death. In this workshop, medical and behavioral experts on adult and pediatric palliative care in primary care and specialty settings will describe best practices employing integrated, collaborative models. They will also specifically address strategies for decreasing discomfort with and increasing acceptance of palliative care among patients and professionals.”
Unlocking Implementation in Primary Healthcare: The Family Check-Up as an Example
(Jodi Polaha, PhD; J. D. Smith, PhD; Courtney Smith, MS; Karen Schetzina, MD)
B1 Friday, October 16, 2015 – Period 1 –10:30 AM (90 minutes)
“Demonstrate traction with your new procedure, program, or protocol using the cutting-edge evidence-based implementation strategies described in this training. Real-world examples using the Family Check-Up will be described by Implementation Scientists and providers in the trenches. The audience will have the opportunity to work exercises that will apply this new knowledge to their own relevant examples.”
Childhood Obesity Prevention and Treatment: Behavioral Health and Medical Providers Partnering in Research and Practice
G1c Saturday, October 17, 2015 – Period 1 –11:40:00 AM (20 minutes)
“Given the high prevalence of childhood obesity, it is important to understand prevention and treatment efforts occurring in family medicine/primary care settings to combat this major public health crisis. This session will detail current interdisciplinary research on both childhood obesity prevention and treatment interventions that have informed childhood obesity clinical care in family medicine/primary care practices. Evidence-based findings will be presented and best practices for childhood obesity prevention and treatment within family medicine/primary care settings will be discussed.”
Linking Primary Care, Schools, and Families to Enhance Child and Adolescent Health
A2b Friday, October 16, 2015 – Period 2 –2:00 PM (25 minutes)
(Cindy Carlson, PhD; Courtney Valentine, PhD; Jane Ripperger-Suhler, MD; Jaqueline Cammerer, MA)
Three initiatives that redesign traditional health care services and structures to improve the health outcomes of children and adolescents through unique partnerships between primary care, families, and schools are described, evidence of their effectiveness provided, and lessons learned discussed.
Expanding Integrated Care Across the Lifespan: Knowledge and Skills for Pediatric and Geriatric Practice
C2c Friday, October 16, 2015 – Period 2 –2:30:00 PM (25 minutes)
(Colleen Fischer, PhD; Christopher Sheldon, PhD; Alison Lieberman, PsyD; Margaret Tomcho, MD; Amy Starosta, MA; Jill Hersh, MA)
The behavioral health issues for children and elderly patients are complex and challenging for primary care providers and caregivers. These populations tend to have developmental changes, cognitive fluctuations, caregiver considerations, and more multifaceted social stressors. This presentation will describe a grant-supported initiative to efficiently provide integrated behavioral health for high-need, high-cost primary care clinics. The session will highlight the unique assessment and treatment techniques, as well as the clinic structure and flow, in these medical clinics.
Family and Community Collaborative Care for Older Adults and Their Family Caregivers
E2a Friday, October 16, 2015 – Period 2 –1:30 PM (40 minutes)
(Barry J. Jacobs, PsyD; John Rolland, MD, MPH; Lauren DeCaporale-Ryan, PhD; Janelle Jensen, MS)
As our country rapidly ages, the future of American healthcare depends in large part on how well we serve the needs of seniors in patient- and family-centered, evidence-based, cost-effective ways. In this workshop, we will present a family and community systems model for conceptualizing collaborative care for older adults and their family caregivers, as well as introduce 3 types of integrated geriatric care: psychotherapy for family caregivers, a primary care-based care transitions program, and a super-utilizer program for frail elderly patients. Specific knowledge and skills for competent geriatric care will be identified.
Group Prenatal Care: A Pilot Project Aimed to Reduce Health Disparities in an Urban Medical Residency Program Utilizing an Interdisciplinary Care Model
C4b Saturday, October 17, 2015 – Period 4 – 10:20 AM (40 minutes)
National trends show a decline in preterm birth rates; however, health disparities including poor physical and psychosocial health remain for pregnant underserved patients. Results from a feasibility study testing group prenatal care in a family medicine residency program utilizing an interdisciplinary care team will be discussed. Initial outcomes, and discussion of the unique adaptations created to serve urban, underserved patients, facing disparities in birth outcomes will be presented.
Strategies for Planning, Implementing, and Sustaining Family-Centered Care Teams in Specialty and Primary Care Settings
E4a Saturday, October 17, 2015 – Period 4 – 9:30 AM (40 minutes)
(Kaitlin Leckie, PhD, LMFT; Maureen Davey, Ph,D, LMFT; Jennifer Hodgson; John Rolland, MD, MPH)
Family members influence patients' health care and clinical outcomes. Although family support is a powerful untapped resource, most primary and tertiary care teams have not been able to routinely evaluate, target, and utilize family support. Operational, clinical, and financial challenges can prevent family-centered approaches to care. In order to address this gap, each presenter will highlight how innovations in funding and team-based clinical approaches can facilitate more family-centered approaches to integrated care.
MEND: A Multidimensional Family Systems Based Approach to Chronic Illness
E4b Saturday, October 17, 2015 – Period 4 –10:20:00 AM (40 minutes)
(Jackie Williams-Reade, PhD; Daniel Tapanes, MS; Mia Pandit, PhD; Griselda Lloyd, MS)
The facilitators will provide an overview of the MEND program to illustrate how it can be utilized in a family systems based program, for both the pediatric and adult populations. In addition the presenters will highlight the use of MEND as an intervention with the veteran population. This section will provide a brief summary of the MEND manual. This includes: 1) the conceptual framework and underlying assumptions, 2) the organizational structure, 3) phases of change, 4) assessments and interventions, and 5) post intervention guidelines.
Hold Me Tight: A Couple Support Group Program for Cancer Patients and their Partners
A6a: Saturday, October 17, 2015 – Period 6 – 3:30 PM (25 minutes)
Each year thousands of couples are affected by the diagnosis and treatment of cancer. Yet our current healthcare system does not routinely provide psychosocial support for couples coping with cancer in a partner. We adapted a promising couple support group, Hold Me Tight (HMT: Susan Johnson, 2009), to reduce distress, improve quality of life, and help couples cope with a partner who is receiving oncology treatment. Given the racial and socioeconomic disparities in cancer incidence, we recruited a minority low-income sample of couples.
Brief Couple-Based Interventions: Getting to the Heart of Coping with Chronic Illness
A6b Saturday, October 17, 2015 – Period 6 –4:05 PM (25 minutes)
(Ruth Nutting, PhDc; Jennifer Harsh, PhD, LMFT; Sean Hearn, MD)
Over half of the American adult population lives with chronic illness. Researchers have highlighted the need for greater attention to be paid to chronically ill individuals' partners’ psychosocial well-being in addition to the well-being of the chronically ill person. Although couple-oriented interventions are often more effective than individual-focused interventions in promoting positive coping, many healthcare providers are not trained to intervene at the couple level. Brief interventions that are commonly used with individuals in medical settings can be modified to target the couple system.
Fathers Matter: The Financial, Operational, and Clinical Implications of Paternal Peripartum Depression
F6a Saturday, October 17, 2015 – Period 6 – 3:30 PM (25 minutes)
(Cassidy J. Freitas, MA,)
Peripartum depression is a significant condition that has the potential for injury and death to parents and children. Today, increasing attention is given to fathers with peripartum depression who are at-risk due to the changes in identity, relationship, and biology that occur when they become parents. Collaborative medicine offers a unique opportunity to detect and provide encompassing care to fathers and families impacted by this mental health problem. C.J. Peek's Three World View will be utilized to provide action steps within the financial, operational, and clinical realms of integrative health care as they pertain to Paternal Peripartum Depression. A multi-disciplinary model for treating Paternal Peripartum Depression will be described.
Posted By Tina Schermer Sellers,
Tuesday, September 8, 2015
I remember many years ago when my daughter and god-daughter were playing in her room just off the kitchen. The girls were about four at the time. My friend and I were in the kitchen making dinner and sharing a glass of wine when one of us looked over at the room and said, "It’s been a little too quiet in there”. We quietly approached the door and could hear the girls whispering and giggling. As we opened the door we were presented with a live Rembrandt. Both girls were stark naked and with their bodies as the canvas, had colored all over each other with colored markers. It was clear that the whole body was used, not just parts. To this day I still regret not grabbing the camera before I said, "Oops! Markers are for paper and you girls need a bath!” Karen and I had a good laugh, in part because we knew this was normal curiosity at this age (I had been through it with my son), because one of our favorite kid’s books was Purple, Green and Yellow by Robert Munsch, and also because the markers were washable!
A vast majority of the people I have interviewed or counseled during my career tell stories of being yelled at, humiliated or embarrassed when "caught” playing doctor with a same age neighbor, cousin, sibling or friend when they were five or six. Many other stories are told of ‘being caught’ when engaged in developmentally normal sexual curiosities and behaviors in childhood and adolescence. When this is coupled by an otherwise silent conversation about sexuality and an authoritarian or controlling parenting style, children deeply root shame and worthlessness within themselves.
In my research I have found that at least 90% of people raised in the U.S. have grown up in homes that were mostly silent, ignorant and often reactive about sexuality and sexual development. When kids do not feel safe to ask questions about their body and pleasure and do not feel safe to exhibit normal curiosities about their genitals and pleasure, they feel shame! Shame says, "Something must be wrong with me. Something must be wrong with who I am, not just what I do.”
We are born sexual. Yet childhood sexuality is as ignored and thus poorly understood as adult sexuality. Infant and childhood sexuality is about being playful and sensual and doing what feels good. Whether alone or with playmates, this is as natural a developmental phase for humans as learning to walk. Yet unlike stories of learning to walk, most people tell stories of being sexually shamed or otherwise injured by what is fundamentally a sexually reactive, ignorant and stunted society.
The One Thing I Tell Young Parents
The most important thing young parents can do to help their child to develop a secure sense of sexual health, beyond the obvious factors of safety and protection, is to understand the developmental tasks of their child, including their sexual, sensual, and physical curiosities. This requires preparing for their curiosities and in-opportune comments (like walking in on you having sex, putting their hands down their pants in the grocery store or peeing on the church lawn). Being prepared buys you time to decide how to respond to such an event, instead of react. This also includes the ongoing plan to have one hundred, one minute conversations about sexuality, bodies, relationships and gender along the way … NOT ONE, ONE-HUNDRED MINUTE (PAINFUL) CONVERSATION!
Think of the life education conversation (which includes sexuality) as a conversation that happens at least weekly. Look for opportunities to frequently say a little something. This is why you want to be one step ahead of them developmentally and aware of what is coming next! The more often you talk about the normalcy of sexuality and intimacy in the human condition, the easier it becomes for everyone! Research shows that parents who do this, not only help to assure their child a healthy sense of self, but kids who grow up with ongoing sexual health conversations with their parents describe themselves as closer to their parents overall!
The Four Things I Tell Adults to Grow Healthy Sexual-Esteem and Sexual Intelligence
1. FRAME your knowledge. Get sex education. Learn about your physical body and the physical body of the other gender. Learn about arousal cycles, safe sex, and STI’s. Learn about your own pleasure - what your own body is like. See it as a miracle – unique, unlike anyone else’s. You be the expert on this unique and special body. Learn about gender and power messages in our culture. With friends, watch documentaries such as Miss Representation and The Mask You Live In by the Representation Project, and discuss social and cultural pressures, and how to protect and support each other. If you are a woman, role play how to stand up for yourself. If you are a man, role play how to protect women. Learn about intimate relationships. Read books like The Heart of Desire by Stella Resnick, Sexual Awareness by Barry McCarthy, Love Sense by Sue Johnson and listen to Men, Women and Worthiness by Brene Brown.
2. CLAIM your body. So much of culture is aimed at inviting you to despise or disapprove of your body or appearance so that in your dissatisfaction you spend more money. But life is too short. You have a right to appreciate every day the gift of your life, the health of your body, the beauty of your uniqueness, and your desire to be seen, known, loved and accepted. This is yours to claim and to live boldly and loudly. Each day. Do gratitude lists. Write affirmations. Let your thoughts lead you to new feelings, and ultimately to new actions. Feel in your body the places of joy, gratitude and love. Live from these places. Let yourself know sensual pleasure and play. Find that inner child and discover your body again and the joy it can bring you. Learn to befriend and inhabit the power in sexual arousal. If there are places in your body that feel tight or hurt, learn to listen deep to the story within. Learn to give to yourself whatever amount of love and grace is needed for any hardship or pain you have suffered. Always give yourself permission to heal and to find whatever help you need.
3. NAME your story. If your sexual story up to this point has been shrouded in secrecy or ignorance or trauma, fear or shame, find a safe tribe of compassionate, loving, and empathic people who can hear your story and love you in and through it. Shame cannot live in the presence of love. Your story needs to be witnessed and you deserve to feel love and compassion. You cannot grow up in a culture as sexually silent, ignorant and confused as ours and not have heaps of shame. Nothing is wrong with you! You were fearfully and wonderfully made. You have done the best you could with what you were given. You deserve to have your story heard, and grace and knowledge to be granted.
4. AIM to write your story of sexuality and intimacy in any way that will bring you joy and nourishment. This is your story and it is yours to write. What are your values, your hopes, and your desires? Aim to write this sexual story. What is the legacy you want to begin to live into? What is the story you want to share with your children or nieces/nephews? You get to write your sexual story everyday by the choices you make. What do you want your new story to say? When will you know you are ready for varying degrees of vulnerability (emotionally/physically/relationally/spiritually)? You determine this. This is your story. What will be the story to honor the beautiful unique gift that is the sensual powerful you?
When I imagine more people living boldly and unapologetically into the gift of their sexuality in ways that allow them to feel deeply seen, known, loved and accepted and in ways that heal generations of ignorance and shame, I can imagine more giggly little four year olds surprising their mothers by their curious naked antics. And I can imagine more mother’s laughing, rather than reacting, remembering to grab their cameras before hoisting them off to the bath!
Dr. Tina Schermer Sellers, PhD, LMFT is the Founder and Medical Director of the Northwest Institute for Intimacy (NWIOI). The Institute provides comprehensive training to therapists, integrating the critical skills of sex therapy and relationship counseling. www.tinaschermersellers.com Tina is also an Associate Professor in the School of Psychology, Family and Community at Seattle Pacific University and Director of Medical Family Therapy.
"So, Mr. Oldman, you’re 65, and you now have Medicare coverage. Let’s talk about what you want when you… you know...when you get to the end of the road.” This is an imaginary conversation opener, but it touches on reality. Right now the only time physicians can get paid for what is surely one of the most important (and difficult) discussions in a patient’s care is at the "Welcome to Medicare” enrollment visit, the least likely time the topic is high on either person’s agenda.
That will change in January 2016 if a proposed Centers for Medicare and Medicaid Services (CMS) rule goes into effect. The proposal is part of an annual update of Medicare’s physician payment schedules. The final rule will be published Nov. 1, and it will include the fees a physician or other professional member of the care team (probably a nurse, physician’s assistant, or social worker) will be paid for each of two advance care planning visits.
A similar proposal in the original Affordable Care Act legislation was derailed by spurious accusations about "death panels” denying care to older people. Some doctors already have these conversations, but payment may be an incentive for many others. And where Medicare goes, private insurance typically follows.
The discussions will be voluntary; predictably some people will opt out, but many others will welcome the opportunity to talk about their wishes if they have an advanced illness. Sometimes their wishes may be general: "I want to die at home,” or "I want everything done to keep me alive.” Some wishes may be very specific, describing treatments they do not want, often based on what happened to a family member whose death went badly.
Barriers to Advance Care Conversations
Regulations can only set out a basic framework. The proposed rule is necessary but not sufficient because the lack of payment is only one deterrent for these conversations. Although some doctors and other professionals have developed good communication skills and can sensitively address advance care planning, this is not something typically taught in medical or nursing school. Some professionals by example convey to trainees the message that this kind of conversation is to be avoided, cut short, or handed off to someone else.
If the discussion takes place in a hospital with a hospitalist in charge, no one on the care team may know the patient. Coordination with a doctor who has been treating the patient and knows more about the patient’s wishes is erratic at best.
Even within medical specialties, attitudes differ. One study conducted by researchers at the MD Anderson Cancer Center found that oncologists who specialize in hematologic malignancies such as leukemia reported being less comfortable discussing prognosis and advance care planning than oncologists treating solid tumors. The hematologic oncologists also reported feeling a greater sense of failure than their solid-tumor colleagues about their inability to change the course of the disease, and were less likely to report satisfaction in providing end-of-life care.
Talking frankly about the likely course of a disease, and the potential risks and benefits of particular treatments, challenges a physician’s own sense of control and power over disease. Talking about death is taboo in many cultures, and the medical culture has its own way of both managing death and distancing itself from it.
Involving Families in Advance Care Planning
An important aspect of the proposed rule is its inclusion of families. Patrick Conway, chief medical officer of CMS, says that the proposal "supports individuals and families who wish to have the opportunity to discuss advance care planning with their physician and care team, as part of coordinated, patent- and family-centered care.” "Family” is a broad term that encompasses many relationships. The patient is the best judge of who should be included.
Families play a critical role in advanced illness often as both care providers and care managers. Families know the person, the trajectory of the illness, and the way the person has reacted to other challenges. They are often better historians of the illness than the patient, and can provide valuable information and insights.
Some health care providers, however, see the patient, and only the patient, as their responsibility. Inviting family members into the discussion opens up their complex history and relationships, another layer of potential discomfort.
In these situations some providers say that they cannot talk to family members because it would violate HIPAA privacy rules. This is a misunderstanding of the law. HIPAA does not prevent health care providers from sharing personal medical information with family members, as long as the patient does not object. HIPAA does not require the patient’s written consent. And while some patients may not want anyone else to be part of the discussion, their true intent is usually to protect them from bad news, not from privacy concerns. Such thinking is understandable; nevertheless, professionals should encourage the patient to identify a few key people to be part of the discussion.
Families are likely to be more trusting of health care providers who communicate with them, acknowledge their fears and worries, and offer emotional support. Conflicts within a family or between professionals and family can never be totally avoided, but honest and frequent discussion can reduce the tension. In some cases a full family meeting can be helpful to clear up misunderstandings and arrive at a consensus about the goals of care and the treatment plan.
Five Suggestions for Implementation of the Payment Rule
Assuming that the rule goes into effect (and even if it does not), physicians and other members of the care team can do a lot to make these discussions go more smoothly.
First, doctors and other team members should discuss among themselves their own level of comfort or discomfort with these conversations. Within the health care team, it should be clear who is responsible for having these discussions.
Second, if the patient has not already done so, the team should encourage him or her to select a health care proxy. That surrogate should be someone who understands the patient’s wishes and can apply them to the situation at hand, becoming the legal decision maker if that becomes necessary. The documentation designating this person should be readily available for the whole care team.
Third, the patient should document his or her wishes. This can be a state-approved advance care directive, or a more informal statement like the "Five Wishes” document. This does not answer all the questions that may arise in a particular situation, but it can guide the decisions that often have to be made in a crisis.
Fourth, advance care planning is not a one-time-only experience. Even the two visits proposed by CMS seems inadequate for complicated cases. The decisions made at an earlier time may need to be revisited and new clinical information considered in the calculus. Most people do not understand risk statistics so this kind of information needs to be presented as it relates to the particular patient, not the population of patients of which she is a part.
Fifth, professionals who bill for advance care planning should be able to demonstrate their ability to hold these conversations in language that is clear, respectful, and compassionate. That might mean some interactive video training or on-site visits by an expert in the field. Talking about advance care planning requires comfort with the subject, skill in listening as well as talking, and empathy for the people whose lives will be affected by the decisions.
Carol Levine directs the Families and Health Care Project at the United Hospital Fund. She is the author of Planning for Long-Term Care for Dummies (Wiley 2014).
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CFHA is a member-based, 501(c)(3) non-profit organization dedicated to making integrated behavioral and physical health the standard of care nationally. CFHA achieves this by organizing the integrated care community, providing expert technical assistance and producing educational content.