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Exploring The "S" In BPS (BioPsychoSocial)

Posted By Melissa Lewis, Wednesday, September 11, 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 August 7th, 2012)

Engel’s BPS Model has served to guide the discipline of Medical Family Therapy, reminding us to assess, acknowledge and treat each of these systems and specifically not to ignore the psychosocial when working in a medical setting. However, what exactly is encompassed in the ‘social’ realm? For social workers it may include basic living needs or connecting patients to other social service agencies. For chaplains it may be connecting the patient to a religious/spiritual community. For marriage and family therapists, it can include working to improve family relationships. Each of these disciplines is addressing important needs of patients that have been proven to aid in more effective treatment, faster recovery, and increased patient satisfaction.

While these ‘social’ interventions are improving the health and well-being of patients, I would like to take a moment to dig a little deeper. I define the social aspects of life and health as cultural and relational ways of being. With that said, it is clear that ideas surrounding health, illness, cures, and healing will vary by individual and community. Yet we utilize ‘evidence-based’ methods that only allow for one way to see, cause and cure an illness which may be subjugating, and possibly ineffective, for the patient.
Melissa Lewis
What would you do as a MedFT if this were your patient?

Let’s continue the conversation through the comments you make!

Some interventions, such as Motivational Interviewing (MI), allow for patient goals and motivation to be accounted for. Further, Galanti (2004) suggests using the ‘4C’s (1. What do you call the problem/illness? 2. What do you think causedthe problem? 3. How do you cope with the problem? 4. What concerns do you have about the problem?) can help to gain a better understanding of the patient’s view of health and illness. Next, the information gained from this assessment can be incorporated into treatment recommendations which will respect the patient’s health belief system and worldview and, therefore, are more effective.

 

I argue that a deeper and often more difficult intervention is necessary to accompany the above-mentioned techniques. I believe that using cultural humility to interact with patients will allow for some of the best health care outcomes possible. Cultural humility is the constant examination of our own biases and perspective. The regular steps of cultural competence still remain: learning/reading about a particular culture, interacting with that culture, respecting cultures other than your own. However, an additional set of criterion are necessary to become culturally humble:

1) Acknowledge that you are on equal footing as their discussant/patient-There is no better way to conceptualize health (i.e., provider vs. patient beliefs surrounding health).

2) Be aware that the discussant lives their life by a set of rules related to their family, history, and environment, which are individualized, discrete and different from your own (Ethnorelativism).

3) Be aware of how your own personal life history over time effects your thoughts, beliefs and behaviors (strengths andlimitations) in relation to the discussant.

4) Acknowledge that one can never truly know the perspective of another individual or culture and that admitting your limitations opens the door to an honest conversation and does not diminish your legitimacy, credentials, or strengths and skills.

5) Does not search to become culturally competent at some distinct point, instead is continually learning about themselves and others through mutually beneficial conversations.

To demonstrate this point I offer a case example based on a real scenario:

A medical provider and her colleagues have been seeing a patient who has cancer (but has been in remission for 4 years) at 6 month intervals to ensure that the cancer (a rapid and progressive one) does not return. At the end of every visit for 4 years, the provider tells the patient and his family that he continues to be cancer-free and the family wails with joy and tears at the end of every appointment. The provider and her team have become frustrated with this response and do not understand the intense emotional reaction to what seems like a routine check-up that has resulted in the same positive outcome for many years. They hypothesize that there is some psychological trauma that the family has incurred due to this health experience that has resulted in some sort of psychological damage and are planning to refer them to psychiatric services. The patient is being seen at an Indian Health Service (IHS) facility in the Southwest United States and belongs to a Southwest tribe of Native Americans.

What do you think the provider and her team are missing from their assessment of the patient and the family? Using MI, the 4C’s, cultural humility, or your techniques to remain client-centered, what would you do as a MedFT if this were your patient? Let’s continue the conversation through the comments you make!

Reference: Galanti, G.-A. (2004). Caring for patients from different cultures. Third Edition. Anthropology of Consciousness, 15, p.66–67. doi:10.1525/ac.2004.15.2.66

Melissa Lewis is a licensed Marriage and Family Therapist. She received her Master's degree at Arizona State University (MFT) in 2007 and her PhD from East Carolina University (MedFT) in 2012. Her research area broadly encompasses the relationship between stress response and BPSS outcomes. Specifically, she studies the stress transmission model with military couples and is also evaluating integrated care interventions aimed to reduce BPSS health symptoms in both Native American and military populations.

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Dejected Views on Family Hating

Posted By Barry Jacobs, Dave Seaburn, Tuesday, September 3, 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 March 6th, 2012)

 



Dejected Views
on Family-Hating


Barry J. Jacobs



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

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

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

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

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

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

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

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

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

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



I Beg to Differ

David B. Seaburn

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

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

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

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

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


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

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I'm Not Her Family Caregiver, I'm Her Husband!

Posted By Theodora Ooms and Jana Staton, Tuesday, August 27, 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 3rd, 2012)

The title of this blog was inspired by a remark that was made to Susan Stamberg NPR reporter, by a man in his seventies attending an art program designed for Alzheimer’s patients with his wife. Many health care professionals, and family caregiver advocates have heard similar remarks. It raises numerous complex questions for health care.

Too often couplehood is invisible to health care practitioners, and ignored in current health care reform discussions. The spousal/intimate partner relationship is fundamentally different from the relationship between an individual and other family members or close friends who may be providing care. It has unique legal, economic, intimate (emotional and sexual) and social aspects. Theodora Ooma and Jana Staton
Too often couplehood is invisible to health care practitioners, and ignored in current health
care reform discussions.

A growing body of research— gradually becoming better known and getting increasing media attention— demonstrates that the quality of a couple’s relationship can profoundly affect and be affected by the physical and emotional health of each individual over their life span. This research was reviewed by participants at our 2008 conference and they also made numerous recommendations about how to implement a couple focus across all aspects of health care (Staton & Ooms, 2011 & 2012, these links are pdf reports). They agreed that it is in the care of the chronically ill where the pay off of adopting a couple-focus could be most significant in terms of increasing the quality of care and reducing health care costs.

The couple relationship intersects with health care throughout the course of chronic illness, from the moment when the initial diagnosis is received, throughout the often protracted and bumpy course of managing treatment (when the patient is still largely independent). The relationship assumes even more importance at the caregiving stage when the partner’s health is severely compromised, other diseases may co-occur, and assistance from spouse or other caregiver is increasingly required for daily functioning. Spouses and partners indeed function as family caregivers, but they are so much more, and their relationship affects the course of a chronic illness long before "caregiving’ in the current medical sense becomes an issue.

Health care systems need to recognize that at all these stages a strong couple relationship can be the health care professional’s best ally; an unsafe, unstable and emotionally destructive relationship is a major health risk. A systems paradigm maintains that when an individual adult becomes seriously ill or disabled, the couple needs to be viewed as the unit of treatment (if there is no partner, then other family members). What this means in practice will depend on the severity and stage of the illness. Yet the official medical establishment continues to operate within an individualistic paradigm. For example, astonishingly the new Institute of Medicine report on Living Well with Chronic Illness (IOM, 2012) pays no attention to the spousal/partner/or family caregiver’s role.

A strong couple relationship can be the health care professional’s best ally
Changing family demographics—the decline of marriage— is often cited as one of the reasons for ignoring the power of the couple relationship. Yet many chronic illnesses or conditions begin in mid-life—diabetes, MS, heart-disease, cancer, HIV/AIDS—when two thirds of adults are married. A recent Census report provides the numbers: In 2010 70% of men age 55-64 and nearly 71 % over 70 years are married. Women are less likely to be married: 61.2% of 55-64 year, and 41.6% of over 65 year old women are married (U.S. Census Bureau, 2010). If committed cohabiting partners, including GLBT couples, were included the proportion of adults married or with a partner would be even larger. These numbers strongly suggest that health care providers should be aware that it is more likely than not that their chronically ill patient has a spouse. (No national data is available on the marital/partner status of those diagnosed with chronic illness.)

The family caregiving community has made laudable efforts to be inclusive of all those (spouses relatives, friends etc) who provide care to the chronically ill, frail and old. The dominant model of family caregiving is to serve elderly patients, and the majority of these are indeed elderly single women, and for the majority of them their caregiver is an adult child.. In the process however the specific issues that are unique to the large numbers of spouses or committed partners providing increasing levels of assistance to their chronically ill partner are seldom addressed.

Recent trials of psycho-educational interventions designed to improve partner communication and assistance in cancer and other chronic illness are showing promise of improving both patient and partner health (Porter et al. 2011; Baucom, 2012; Scott, Halford & Ward, 2004). Meanwhile numerous innovations are underway to improve the quality and cost effectiveness of health care: for example efforts to improve the management of care transitions, adherence to treatment protocols, coordinate care for those with multiple conditions, prevent unnecessary rehospitalizations (bounce-backs), and establish medical homes.

These innovations offer a window of opportunity to integrate couple relationship information, education and other couple-focused practice and management tools in current reforms and to find out, as seems very likely, whether they do help improve health care quality and reduce costs. Couple-focused approaches should be viewed as complementary to those focused on family caregivers more generally.

We invite readers of this blog to share examples of actual, or proposed practices or system changes in the primary care of chronic illness that exemplify taking a couple perspective. To jump-start this conversation here are a few suggested changes in practice at different stages of chronic illness, but they could be adapted to be used in health care more generally:

  • In the initial medical examinations routinely collect and record information about the spouse/partners and his/her own health status; obtain permission to actively involve the partner in the patient’s care whenever it would be useful.
  • Medicare now reimburses practitioners more if they conduct an Annual Wellness Exam (Center for Medicare & Medicaid Services, 2011) The exam is to include an assessment of the individual’s functioning ability and level of safety in the home. We propose the CMS circular should also require that if they learn that the patient is receiving assistance with medications or ADL, they find out who provides the patient with assistance, and if that person is a spouse/partner (or other relative), and what is the general status of their health.
  • In the treatment and management of chronic or serious illness, routinely invite the spouse/partner to participate in diagnostic discussions, planning for discharge and involve the partner in explanations of post-discharge home-based treatment protocols.
  • Provide the couple with written information (or CDs. DVDs) about how the chronic illness may affect the legal, economic, and intimate aspects of their relationship. Make referrals to additional education and support services designed to address these issues, such as the National MS Relationship Matters program (see Staton & Ooms 2012, pp 15-16).

References, Links

Baucom, D., H., Porter, L.S., Kirby, J.S., Hudepohl, J. (2012) Couple-Based Interventions for Medical Problems, Behavior Therapy. 43(1):61-76.

Center for Medicare and Medicaid Services. Annual Wellness Visit, Circular MM 7079. Link Here.

Institute of Medicine (2012). Living Well with Chronic Illness: A Call for Public Health Action.http://www.nap.edu/catalog. php?record_id=13272

Porter, L.S., Keefe, F.J., Garst, J., Baucom, D.H., McBride, C.M., McKee, D.C., Sutton, L., Carson, K., Knowles., V., Ruble, M., Scipio, C. (2011) Caregiver-assisted coping skills training for lung cancer: Results of a randomized clinical trial. Cancer, 115 (S18), 4326-4338.http://www.jpsmjournal.com/article/S0885-3924%2810%2900528-2/abstract

Scott, J.L., Halford, K.W., & Keefe, F.J. (2009). A couple-based intervention for female breast cancer. Psycho-oncology,18 (3), 276-83. http://www.ncbi.nlm.nih.gov/pubmed/18702064

Staton, J., Shuy, R., & Byock, I.(2000). A Few Months to Live: Different Paths to Life's End. Washington, D.C., Georgetown University Press. http://www.press.georgetown.edu.

Staton, J., & Ooms, T. (2011). Marriage and Relationship Factors in Health: Implications for Improving Health Care Quality and Reducing Costs. Issue Brief, National Healthy Marriage Resource Center. http://www. healthymarriageinfo.org/ resource-detail/index.aspx? rid=3938.

Staton, J., & Ooms, T. (2012). "Something Important is Going on Here!" Making Connections Between Marriage, Relationship Quality and Health: Implications for Research and Healthcare Strategies and Practice. Proceedings Report of the 2008 Wingspread Conference. National Healthy Marriage Resource Center. http://www. healthymarriageinfo.org/ resource-detail/index.aspx? rid=3984.

U.S, Census Bureau (2010) Marital Status: 2010 American Community Survey 1-Year Estimates http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_1

 

Theodora Ooms, a social worker and family therapist has worked for thirty years in Washington DC to integrate a family systems perspective into federal and state policy and programs. She was a participant in the founding CFHA Wingspread conference in 1993 and is very happy to be reconnected.

Jana Staton, has her doctorate in counseling psychology, and currently works as a marriage and family therapist and couples educator in Montana. She is the co-author of A Few Months to Live: Different Paths to Life’s End.

In 2008 Ooms and Staton coordinated a three day invitational conference at Wingspread designed to critically review the research on the connections between marriage and couple relationships and health, and make recommendations for changes in health care practice and policy.

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When Family Devotion Leads to Killing: Some Ethical Questions

Posted By Carol Levine and Barry J. Jacobs, Tuesday, August 20, 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 April 17th, 2012)


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


by Carol Levine

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

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

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

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

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

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

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

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

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

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

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

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

Carol Levine directs the Families and Health Care Project and the Next Step in Care campaign at the United Hospital Fund in New York City. She is a Fellow of The Hastings Center, a bioethics institute, and writes frequently about ethical issues in health care.

Barry Jacobs
Part 2:
Narrative Means to Homicidal Ends
by Barry J. Jacobs, PsyD

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

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

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

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

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

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

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Sending helpful and healthful messages within families

Posted By Katharine Wickel, Monday, July 15, 2013


This blog post is the third in a month-long series about the bi-directional relationship of family systems and nutrition.

It seems like we are constantly being bombarded with "health” messages by various forms of media. There are commercials, billboards, Internet advertisements, and whole television shows dedicated to weight loss. Magazines, for both women and men, have monthly articles addressing new diets, exercise routines, super-foods, foods to avoid, and other ways to make one’s body look better. Most of this is done to promote the illusive ideal of a perfect body, and much of it is done in the name of "health.” We are also not completely off the hook either; we fully participate, not only by the media we consume, but what we choose to pass on through social media. This takes various forms of sharing information about our latest physical activity, healthy recipe, etc. Some of this promotes health and some does not.

To be sure, not all media coverage and social media activity that is related to weight loss is negative, but with so much information being available and shared, one question that arises is: what is helpful? How do we know what we should talk about? As professionals, how can we actively help families be able to not only be wise consumers of health media, but also how to have conversations about health. Answering these questions fully, would most likely take several years of research to really understand the nuances of conversations for both men and women of various ages, cultures, ethnicities, and socioeconomic statuses and is beyond what I can adequately address in a blog post. However, I will address discussions about weight versus health and our role in these conversations as providers.

Families have a great characteristic going for them; they are a family!
First, think about the context that exists for our patients. Most, if not all, are surrounded by important people in their life; often this comes in the form of family. Basic systems theory suggests that each person in this group is constantly influencing each other. Research has found that social support plays an important role in changing behavior, and this is true of health and nutrition habits also. Families have a great characteristic going for them; they are a family. This may sound too simplistic, but think about it. They are an already-formed group of people, who have investment in each other. Families can support and influence each other in what they’re consuming (i.e., food and media). Health and nutrition work has to happen within (not against) this context if we are to have any hope of creating long-term, sustainable change. The ways in which families communicate about nutrition is important. 

In recent years, studies have consistently found that when parents focus on "healthy messages” such as, ‘eat your fruits and vegetables to have a strong body’ instead of messages that focus on a child’s weight or size such as, ‘you need to eat more fruits and vegetables to lose weight’ adolescents are more likely to have healthy behaviors such as fewer disordered eating behaviors, eating more healthful foods (i.e., fruits and vegetables) and lower weight status(1). This can become a difficult task for families to deal with if there are concerns about family members being overweight or obese. Many people are familiar with health risks associated with obesity but are unsure how to address this.

This was reinforced again and again for me this spring as I worked on a study funded by the Healthy Foods, Healthy Lives Institute called UMatter. Drs. Jerica M. Berge and Dianne Neummark-Sztainer are the co-principle investigators of the study. The main aim of UMatter is to prevent adolescent obesity by working with adolescent girls and their parents in a primary care setting. The parents had many questions about how to have these conversations with their daughters about weight and healthy eating and were genuinely interested in how to best help their daughters navigate these difficult topics. Parents want to be helpful, but may not have the understanding of how to be helpful.

In thinking about the contexts in which our patients live and the influential ways they can communicate with each other, there is an additional role for healthcare providers: promoting helpful conversations and healthy changes by starting small. When working with a family to make healthy changes, it is our professional responsibility to help the family work together, and provide them with skills and ideas of how to do so. Health is such an abstract term, and each family member may have a different idea of what it means to be healthy. As a behavioral health provider, I’ve worked with several patients to help them change their habits to become healthier. I have found that an essential piece of the conversation is to define small behaviors that the patient understands and is willing to implement (i.e. eat one whole piece of fruit a day, measure portion sizes, add a vegetable to every dinner, etc.). The blanket statement of "You should eat more healthy food” has little meaning and can be difficult to understand (let alone implement). You may be intending that the patient change small behaviors, but he or she may hear "I have to change everything about the way I eat. I can’t eat any desserts or candy.” This type of idea is extreme. Such a dramatic change would probably be overwhelming, and the likelihood of the patient sticking with it is very low. It is much more effective to have smaller conversations about having one less soda, or an alternative for a snack that is slightly healthier than before. These small changes can build confidence and lead to more small changes, which in turn grows to larger healthier habits.
Define small behaviors that the patient understands and is willing to implement

Thinking of family as social support for healthy habit formation, changing conversations from weight to health, and making small changes that add up to big changes, are all important steps forward in moving toward treating overweightness and obesity. These concepts may not be new to providers, but can be for the families with whom we work. Ideally, this helps empower and educate our patients and promotes long-term and sustainable systemic changes in their nutrition and health. Nutrition and health can provoke a lot of anxiety, and families may not know where to start. We as providers, can start within the family, promote conversations about health rather than weight, and start with small goals that patients can build into big changes. 

Reference

1. Berge, J.M., MacLehose, R., Loth. K., Eisenberg, M., Bucchianeri, M.M., & Neumark-Sztainer, D.N. (2013). Parent conversations about healthful eating and weight: Associations with disordered eating behaviors. JAMA Pediatrics. (Epub ahead of print).


Katharine Wickel, MS, LAMFT, is a doctoral student in Couple and Family Therapy Program within the University of Minnesota’s Department of Family Social Science. She is currently working on several research projects that address health disparities within different communities in the Twin Cities Area; these projects address Obesity and Type II Diabetes in the context of family and culture. She is also currently working on her dissertation proposal which looks at implications of discordance in family reporting on family and health variables on adolescent disordered eating habits. In addition to her research she also works as a Behavioral Health Intern at Broadway Family Medicine, a primary care clinic that is part of the University of Minnesota’s residency training program.

 

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Strengthening parents’ skills for shaping home environments and helping children build healthy habits

Posted By Kate Dickin, Tuesday, July 9, 2013


This blog post is the second in a month-long series about the bi-directional relationship of family systems and nutrition.

How can you get kids to eat their veggies? It’s been a stumbling block on the road to parenting healthy children, even before the "obesity epidemic” focused extra attention on parents’ influence on what kids eat. In my work with Cornell Cooperative Extension providing nutrition education to low-income families, I hear about many hurdles that well-intentioned parents face.

He picks out asparagus, and it’s not really something [chuckle] I want to try. I’m like hmm, "Yeah it’s really good,” and then he tried it, and he liked it but I didn’t. How do you get around telling them it’s good for them and you don’t like it yourself? So that’s challenging for me.

With increasing public health concerns about childhood overweight and obesity, parents are being bombarded with advice -- on how to feed the kids, turn off the tv, get active – even on how to be a good parent. Sometimes the implication is that parents are to blame for unhealthy weight gain in children. Even parents of overweight children tend to view other parents of overweight children as neglectful or unhealthy role models(1). The stigma is unproductive and harmful. Moreover, it’s just wrong. While parents influence children in many important ways, we also know that the environments where kids live, learn, and play create many challenges.

It’s hard to make healthy choices while surrounded by cheap, tasty, calorie-laden foods. Most parents will tell you that time constraints, food preferences, and family dynamics impact their best efforts to model healthy habits, set limits, and encourage good choices. And very few children, regardless of weight, eat according to the Dietary Guidelines(2). Disadvantaged neighborhoods offer limited access to healthy food and safe play spaces(3) and low-income parents struggle to make ends meet, pay for housing, food, and medical bills – all the while trying to protect the kids from the stress.

It’s just... going to be hard. The main reason that we get the big things of iced tea is because it'll last us throughout the month. You know, so by the time the end of the month comes and we have nothing, we at least have the iced tea. That's the main reason we get it, so the kids will at least have something to drink.

After they eat, they’ve still got to do their homework, get cleaned up and ready for bed. During the week it's hard for me to get to the store, so it's hard to keep fresh [produce] on hand. It’s got to be something I can buy on the weekend that's going to last.

At Cooperative Extension, we support families through nutrition education programs funded by the US Department of Agriculture and delivered by paraprofessional community nutrition educators (CNEs) who are connected to local communities and serve as supportive role-models. Healthy Children, Healthy Families: Parents Making a Difference! (HCHF) is a curriculum aimed at helping low-income parents not only learn about healthy eating and activity, but also develop parenting skills to influence kids and create healthy home environments(4).  HCHF is for parents of 3-11 year-olds, not just overweight children. And it’s part of a larger initiative to expand nutrition education beyond individual behavior change to also focus on creating healthful community environments(5).
It’s hard to make healthy choices while surrounded by cheap, tasty, calorie-laden foods.

HCHF promotes recommendations linked to healthy weight and reduced chronic disease risk: replacing sugar-sweetened beverages with water and low fat milk, reducing energy-dense foods, increasing vegetables and fruits, playing actively, and eating only when hungry. While these recommendations are made by countless health professionals every day, HCHF’s hands-on workshops provide time to engage in discussion, develop practical skills, set goals, and support each other’s progress. Selected parenting skills are integrated into the curriculum: teaching by example, building supportive relationships with positive feedback and respect, giving children choices within limits, and creating home environments that make healthy choices easier. The overall theme is to support parents’ efforts to "help make healthy habits happen,” a slogan created by one of the CNEs.

But research evidence on links to child health does not necessarily identify practices that work in real life for low-income families. To learn about acceptability and feasibility of HCHF nutrition and parenting behaviors, we conducted "Trials of Improved Practices” in which parents chose and tried new behaviors, then reported on their experiences(6). The small group of low-income parents we interviewed faced many challenges in their lives, but were motivated enough to enroll in and complete HCHF.

Parents reported success with specific strategies such as offering limited healthy options and they appreciated the value of helping children learn to make decisions on their own.

What I try is, just give them two choices. If I don't want them to have iced tea, I'll just give them a choice of milk or water and I mean, it works... Sometimes they'll throw a fit for a little bit, but I just keep telling them, "These are your only choices,” and it works.

Can-do, that’s like, giving her, giving her choices right? Can do is good because she gets to learn about choosing and decision making.

Most of the recommendations were feasible and acceptable to at least some families and parents saw that despite the challenges, effective parenting strategies were worth the effort.

It's not the easiest thing to be consistent because you know that they don't really want to and you feel bad, but you know what? In the long run it's going to pay off. We've used consistency not just with food -- with his behaviors and his attitudes and his school and with everything. We've learned that you have to be consistent because if you don't you just have chaos.

There were also challenges. Parents were practical and insightful about trade-offs made in the face of conflicting priorities and limited resources. Parents expressed a strong drive to keep kids fed and happy – a drive that could outweigh the health information they received. 

It’s hard... we were always indulged with food. Growing up, it was always "eat it, it's there, eat it.” We never had to worry about food. My wife didn’t grow up with cabinets full of food, so she hates to have them empty. I can see some parents, they didn’t have it when they were growing up and they want their kids to have it. Regardless if somebody says it's no good for them or not.

Even when success was not immediate (so often the case with those vegetables!) many parents demonstrated a willingness to communicate and work with their children over time. Food preferences and time constraints were some of the biggest barriers to behavior change. Food costs, insecure living situations and chronic health problems were mentioned by some families. Other adults in the home were sometimes facilitators, sometimes barriers.

 He’ll be like, "You and this health thing. Don’t try to… convert me, manipulate me, with your ‘nutrition knowledge’. You go to this class and all of a sudden you come back with this foolishness.” [laughing]

Parents come to HCHF with many good practices in place, yet they also report learning a lot and making positive changes at home. We think HCHF is useful for families –the information provided is not that different from what parents hear in the media and from health professionals, but the focus is on application. Community programs like HCHF offer opportunities to follow up professional consultations with hands-on, accessible programming to help put recommendations into practice. Such programs may exist in your community but be underutilized. Stronger referral relationships with family health professionals would benefit everyone.

What have we learned from parents in HCHF? Parents are trying hard. It’s about health, not weight – all kids need healthy diets. Acceptability and feasibility of practices varies by family – what gets labeled as indulgence from the outside may just look like love inside a family. Parents can enhance behavior change by choosing which recommendations to try. And finally, environments matter. Multifactorial public health problems like childhood obesity require multifactorial solutions. It just may "take a village” to get kids to eat their vegetables. You can be sure that blaming and shaming won’t do the trick.

References

  1. Kalinowski A, Krause K, Berdejo C, Harrell K, Rosenblum K, Lumeng JC. Beliefs about the role of parenting in feeding and childhood obesity among mothers of lower socioeconomic status. J Nutr Educ Behav. 2011.
  2. U.S. Department of Agriculture and U.S. Department of Health and Human Services. Dietary Guidelines for Americans, 2010. 7th Edition ed. Washington, DC: U.S. Government Printing Office; 2010.
  3. Kumanyika S, Grier S. Targeting interventions for ethnic minority and low-income populations. Future Child. 2006;16(1):187-207.
  4. Lent M, Hill TF, Dollahite JS, Wolfe WS, Dickin KL. Healthy children, healthy families: Parents making a difference! A curriculum integrating key nutrition, physical activity, and parenting practices to help prevent childhood obesity. J Nutr Educ Behav. 2012;44(1):90-92.
  5. Food and Nutrition Education in Communities. Collaboration for Health, Activity, and Nutrition in Children’s Environments (CHANCE).2011; http://www.fnec.cornell.edu/Our_Initiatives/CHANCE.cfm. Accessed December 12, 2012.
  6. Dickin K, Seim G. Adapting the trials of improved practices (tips) approach to explore the acceptability and feasibility of nutrition and parenting recommendations: What works for low-income families? Maternal & Child Nutrition. (in press)


Kate Dickin, PhD, is a Research Scientist in the Division of Nutritional Sciences at Cornell University. She conducts translational research on child nutrition and parental feeding practices, food security, micronutrient supplementation, and interventions to reduce health disparities in the US and globally. A particular research focus is the interface between programs and communities, exploring factors that influence the motivations, behaviors, and interactions of practitioners and families.

Tags:  nutrition 

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It’s Not (All) About the Food, It’s (Also) About the Process of Feeding

Posted By Keeley Pratt, Wednesday, July 3, 2013


This blog post is the first in a month-long series about the bi-directional relationship of family systems and nutrition.
I recall from my family therapy training hearing a particular supervisor continually repeat the phrase, "It’s not about the content; it’s all about the process.” I employ the readers of this post to apply that same understanding to the topic of family systems and nutrition, for the purpose of this post is to consider the process of feeding and dining together, not the content of the food itself.

Statistically speaking, more than one-third (35.7%) of adults reading this post (located in the United States) are obese;1 for those readers who have children, 31.8% of them struggle with being overweight, and 16.9% are obese.2 I note these statistics because every single person reading this post can either relate personally to these statistics or loves someone who can. Food is not only meant to be life-sustaining, but also should be enjoyed and experienced socially.

Think back to the last time you had your favorite food served to you… your ultimate favorite food in the world. Think back to how the food looked on your plate. Was it served hot or cold? Was there steam coming off of it? What did the presentation look like? Who cooked it for you? How did it smell? Could you smell it cooking in the kitchen? Does the smell remind you of any warm memories when this same dish was served? Now, recall getting ready to take the first bite of your favorite food. Who was with you when you were served the dish? Did you have to use a knife to cut it? Did you scoop it with a spoon? Remember how all your senses were preparing to taste this food, your favorite food.

Finally, you take a bite, slowly allowing the flavors to absorb into your taste buds, remembering the familiar texture of the food in your mouth. Then you swallow, and smile knowing that there is more where that bite came from. You look around at the other(s) with you, expecting their reaction to be as blissful as your own – to enjoy in the experience of sharing this meal together. Our family and community in many ways determine which foods are purchased, how they are prepared and served, and the dining atmosphere where food consumption takes place. All of these elements employ family systems theory and elements of process that can ultimately impact the experience of feeding and eating.

The purpose of this post is to briefly introduce the dynamics around the process of feeding. This blog is not to discuss "food” itself, or to blame anyone for their (mis)use of food. Additionally, I want to be mindful that our friends and colleagues in Nutrition and Food Science are better equipped to talk about the "content” or nutrient density of food.

1. Food is meant to be enjoyed WITH others: A family that eats together, stays together

The process of eating is meant to be a social experience where family members can join together not only to eat, but also to commune about how their day went. This is a time, set aside routinely, that can serve as a touch point for parents and children, romantic partners, extended family, and others to communicate about their daily ups and downs. In fact, we know that the benefits of family meals include decreased chances of developing, substance abuse, depression, eating disorders, and obesity. Specifically, youth who participate in family dinners with their parents have better overall academic performance, higher self-esteem, a lower risk of teen pregnancy, and greater sense of resilience.

2. Food ≠ love, Feeding = LOVE

We have been taught by our parents, and our parents-parents that love is often shown through the foods we serve at meals. Love motivates us to prepare food for our family, often cooking for hours before it’s served, so that the final product can be enjoyed by all. This can become a challenge in families when a child or partner may refuse to eat a food, critique how a food is prepared, or simply may not be hungry. It’s not hard to imagine how upsetting it could be when a family member refuses to eat or critiques the food that is prepared, lovingly, perhaps for hours-on-end on top of a long workday.

It’s important to remember that the process of feeding is still employed even when food consumption may not take place as smoothly as expected. For example, if your school-age child states, "I hate when you cook green beans!” or your partner remarks, "This chicken is a little burnt this time.” These aren’t personal insults or an indication about how much they love the person who prepared the food for them. We need to encourage our clients and patients to not get caught in a trap where a fight over food might take place. The time we get to socialize with our families every day is limited by busy schedules and demands, and although feelings can get hurt when the effort put into the food preparation may not be acknowledged, family time shouldn’t be taken up by "food fights”.

In order to stay focused on the process of feeding, we should expand from thinking about the content of the food being served (or what is "rejected”) to the process of what is going on with the family at dinner. For example, a child could be having a bad day overall, and the refusal of food is just an indication of something upsetting that happened at school. If a partner makes a comment about the quality of the food, clients and patients can use the opportunity to have a conversation about how the feedback makes them feel. Ideally, conversation should shift over family dinners from food or what is being served to the day’s events.

Other meal-time process considerations include:

  • How are individuals making eye contact during the meal?
  • Is everyone participating in the conversation during the meal?
  • What kind of tone are individuals using during conversation?
  • Does everyone get up at the same time?
  • How are second servings asked for?
  • What kind of thanks is given to the person who prepared the meal?
  • What kinds of topics are brought up during the meal, and how does each person respond?

Keeley J. Pratt, PhD, IMFT, is an assistant professor in the couples and family therapy program in the department of Human Sciences at The Ohio State University, an independently licensed marriage and family therapist, and an AAMFT approved supervisor. Her research focuses on family-based factors that contribute to or are modifiable in the treatment of child/adolescent obesity. She has over 50 presentations at local, national, and international conferences and has authored over 25 manuscripts and book chapters about child and adolescent family-based or integrated obesity treatment, medical family therapy, and supervision in healthcare settings. Currently, Dr. Pratt is working to expand family therapy education to include clinician training on systemic weight-related behaviors (including feeding) and working with clients who are struggling with overweight and obesity.

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What to Wish For

Posted By Barry Jacobs, Wednesday, June 26, 2013

When he became my step-father when I was 17, he and I never made eye contact. We resented each other’s presence in the house and tried to avoid one another as much as possible. He wanted my mother all to himself. I resented the fact that he was taking my deceased father’s place. We passed each other in the narrow hallways with heads down, barely grunting in recognition. If I’d never looked at him again after I reached college age and moved out, it would have been all right by me.

Now, 37 years later, each time I visit him in the dementia unit in the nursing home, I find myself staring at him, gawking at his transformation. His body is now all jutting bones and red sores. His face is a stiff, gaunt mask covered with flaking skin. He gazes back at me just as intensely. I wonder what his blue eyes see as they stare at me, what is going on in the shrunken brain behind them. But his eyes quickly go vacant—unfocused and uncomprehending—with too-narrow pupils. It is clear he no longer recognizes me. In his severely demented and diminished state, I no longer recognize him

What should I wish for him? It only embarrasses me a little that I’ve spent most of my life hating him and wishing him dead. Now that dementia is slowly draining all life from him, I’m ambivalent about what I want to occur. Part of it has to do with my mother’s feelings. During her three-times-a-week visits to the dementia unit’s crowded day room, she still takes small pleasure if she can coax him to eat everything on his lunch tray, as if he were some stubborn toddler. If he also babbles to her—mostly random words and sentence fragments without meaning--she is thrilled for the rest of the day. Even though she has signed nursing home orders to let nature take its course in the event he becomes seriously ill, rather than having him sent to the hospital, my mother isn’t ready to let him go. Caring for him still gives her purpose. Without him, she will feel utterly alone. In deference to her, I don’t want him to die just yet.
How many of us resolve all remaining issues with the dying? How many of us are left with regrets?

But part of my ambivalence also has to do with my unsettled relationship with him. How many of us resolve all remaining issues with the dying, especially those with whom we’ve clashed and whom we then demonized? How many of us are left with regrets? As a teenager and young adult, my step-father served as the example of all I didn’t want to emulate—the Anti-Mentor. Where he was jokey and false, I would sanctimoniously try to be straight and true. Where he was manipulative and self-serving, I would attempt to be above board and serve others. In my mind, he was my foil, my moral counterpoint. But using him in this way to help define myself also connected him to me psychically. It gave him a role of some importance in my development. Even as an older and supposedly wiser middle-aged adult, I never bothered to get to know him beyond the caricature of rival and villain.

Last week, my mother learned that the nursing home staff members have been unable to heal my step-father’s persistent bed sores. It’s a sign that dementia is sapping his recuperative powers and that his end isn’t far off. The nurse who called my mother suggested hospice services for him. My mother asked me what she should do. I recommended that she agree to hospice. She was sad but acquiesced.

I’m feeling conflicted. Part of me regards this matter-of-factly as the right thing to do. Part of me feels a little sad, too, about his likely death in the next few weeks or months. Who was this guy? I’m reluctantly coming to the realization that I wish I knew.


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 Out for Yourself and Your Family While Helping an Aging Parent" (Guilford, 2006). Please see the book’s website—www.emotionalsurvivalguide.com.

Tags:  caregiving  dementia 

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Watch Your Mouth

Posted By Stephanie Trudeau-Hern, Tuesday, June 4, 2013

I am going to use this blog post to write about something that is very dear to my heart. The topic is how we communicate about illness: the rhetoric, dialects, and metaphors that riddle the conversations we have with and about a person who is diagnosed with a chronic illness. I will share with you a story, an analogy, some history, and finally a call to action. Some of my words are supported by research and literature, and all are based off of real conversations I've had with patients and family members impacted by a diagnosis of cancer. 

The Story:

"Stephanie, the reason you have felt sick is because your body has been lacking in proper defenses and your immune system has been taken over.  Cancer cells have invaded your body and have colonized into a tumor. Our plan of attack is to excise the mass and begin an aggressive regimen of chemotherapy and radiation. It is very important that you remain positive and keep fighting so you have a better chance at defeating this.” 

From this moment on, I am a woman with cancer. I am a cancer patient. My identity will be wrapped up in a culture of metaphors that feel terrifying and abrasive. I am now at war with my body. It appears that I only have two options: I can stay positive and fight for my life in the hopes of becoming a survivor, or I can fall victim to my disease. I wonder if in my eulogy they will say I fought a good fight…

An Analogy:

Truth be told, I've never had cancer, but a great deal of people close to me have. I have heard these words resonate in the halls, the exam rooms, and in the infusion rooms of the oncology center where I provide behavioral health services. I have met with enough people who have been diagnosed with cancer, and their loved ones, to know that the war-laden language of cancer has an impact, and from what I am hearing it may no longer be a positive one.

During my quest to explore the dialect of cancer I was honored to have a conversation with family scholar Dr. Jay Mancini. I shared with him a conceptual paper I’d been working on regarding this very topic. When we met, he didn’t want to talk about cancer. He wanted to talk about tomato blight. Tomato blight, he stated, was a common yet annoying problem for gardeners. Tomato blight is a rapidly spreading plant disease characterized by a rotting of the leaves and foliage. For decades frustrated gardeners accepted this as a consequence of humid weather. Eventually it was discovered that watering the tomato plant from the wrong direction causes tomato blight. When a gardener waters from the top of the plant, the force of the water causes dirt to splash back up onto the leaves, therefore spreading the organism that causes blight. By changing how the water was delivered, watering at the base of the plant, this annoying issue with tomato plants occurred less often.

He asked me if I understood his point. I didn’t, but he patiently allowed me to chew on it for a couple minutes. Then I got it; it made perfect sense. Maybe what we have been doing all along, which was to do what we knew how to do (watering from the top), was the very thing that was causing harm to our patients (the plants).  Maybe the main thing we need to do instead is to change the delivery of the language (water at the base).  Maybe we have been inadvertently and unknowingly harming our patients by the way we talk about their illness. 

The History:

In 1978 Susan Sontag wrote Illness as Metaphor. She posed questions about the benefits of war-laden language that had been attached to cancer. The metaphors of war had been used to communicate about tuberculosis. Now that the etiology of TB is understood, war metaphors have been transferred onto cancer and other illnesses. She discussed how using these metaphors created norms throughout society that may not have been beneficial to the individuals with the disease. By attaching war language to a physical illness, it is implying one either fights, or dies. One either survives or fails to thrive; that essentially only the strong survive.  

Prior to Sontag’s book, a political movement had started in 1969 with an advertisement to the Washington Post presenting a plea to President Nixon to reduce the secrecy of cancer and to put forth exposure on the veracity of the disease. In 1970 the "Moon Shot” campaign was launched. A large amount of government money was put into creating cancer research dream teams. It was like NASA for the cancer research community. The political call for answers and release of money to find a cure had solidified the rhetoric for the "war on cancer”. The 1970’s became the generation that no longer secretly whispered about cancer.

Sontag’s hope for the future was a movement beyond the limited language that had been created for cancer to include a broadened scope of actual patient experience. This was in 1978; 35 years later we are still using the same winner/loser language. 

So What?

While conducting a qualitative interview, I asked a widowed husband about his experience with his wife’s cancer. He recalled, "People say the dumbest things. When they would say, ‘keep fighting’ or ‘she’s a fighter’, I wanted to scream, ‘What do you think she is doing?!’ … To me it was as though they were implying that she was not fighting hard enough, that if she fought a little harder she should be able to beat this. I wanted them all to know that if cancer was something one could beat by sheer will and toughness, she would have been the one to do it. She did not fail to fight hard enough. Cancer was just better; cancer won.” He then said, "Still to this day when I hear the words, ‘stay positive’, or ‘keep fighting’, it makes me want to jump out of my skin.”

When an individual’s identity becomes rooted in metaphor, the metaphors themselves become the basis of communication within their social system. Metaphors are critical to our sense of meaning making. It helps us assign something we are familiar with and gives language to what we cannot explain. I have sat with many women who are breast cancer "survivors”. I hear from them that the war metaphors have become emotionally grating. I’ve had women tell me that they do not feel that they deserve all that comes with the "survivorship badge.” One woman in her early 30’s stated that she would rather be called a "thriver” or an "overcomer”. When it came to her illness and the treatment she received, she felt she did what she had to do. Nothing she did was superhuman; it was the luck of the draw that she no longer has cancer, when others around her died from cancer. She didn’t want to be seen as something special, being labeled a survivor was too much for her. She didn’t feel that she fit in the same category as all the other women who take ownerships of their survivorship badge. 

We have yet to develop a broader and more helpful way to communicate about one of the most feared diseases of our time. As clinicians and providers we are often the ones who begin the communication around a diagnosis.  We are the ones who introduce the language, the metaphors, and the rhetoric to patients and their families. I say let’s do better; let’s ask the ones with the diagnosis what language and metaphors work for them. Let’s start watering from the bottom!

References

Diedrich, L. (2007). Treatments: language, politics, and the culture of illness. University of Minnesota Press: Minnesota.

Ehrenreich, B. (2009). Bright-sided: how positive thinking is undermining America. Picador: New York.

Mukherjee, S. (2010). The emperor of all maladies. Scribner: New York. 

Sontag, S. (1988) Illness as Metaphor and AIDS and Its Metaphors. Picador: New York.


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

Tags:  cancer  communication 

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Treating the Patient

Posted By Grace Wilson, Tuesday, May 28, 2013

"The good physician treats the disease.  The great physician treats the patient who has the disease.”

William Osler, 1849-1919

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Rachel is scared.  At 55 years old, she’s faced a lot in her life, and has managed pretty well to this point.  She worked in a local factory until she was laid off 5 years ago.  Although she’s been struggling financially since then, she figures that leaving the physically demanding job has probably been better for her health, and she and her husband Daniel manage to get by on his monthly disability check.  With the help of her physician, Dr. Andrews, her Type II Diabetes has been mostly well controlled since her diagnosis 15 years ago.  Now, though, a bigger medical problem looms on the horizon – she found a lump in her breast last week.  Rachel is very familiar with the realities of what this could mean, because her mother died of breast cancer when she was Rachel’s age.  Daniel is a big emotional support for her, but he doesn’t have much knowledge of medical issues, and she is afraid to burden him with her fears because he is struggling with his own health concerns.  Now, Rachel and Daniel are sitting in an exam room waiting for Dr. Andrews to come in to discuss the results of Rachel’s mammogram and consider what her options for further diagnosis and treatment will be.

Dr. Andrews has treated Daniel and Rachel for over 20 years.  He is familiar with Rachel’s medical history, her family situation, and her fondness for baking pies every Christmas to share with the office.  Now, he has the results of her mammogram.  Although she’s going to need a biopsy to confirm the presence of cancer, the film is not looking good.   As he walks into the room, he sees the mix of hope and fear on Rachel and Daniel’s faces, and he knows that the relationship he has with them will be an important part of her quality of life – both medically and personally – in the days to come.

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What can be done to foster a positive provider-patient relationship?
The provider-patient relationship can be a rich source of support and healing for patients who are facing stress related to health and illness.  It is built on trust, knowledge, and, increasingly, collaboration.  In the IOM 2001 report "Crossing the Quality Chasm,” six aims for healthcare are presented – among them, patient-centered care, which emphasizes the relationship between patient and provider.  The authors posit that the best healthcare is based on a continuous, healing relationship that is customized on patient needs and values, with safety, transparency, and the free flow of ideas. 

Research has shown that attention to the provider-patient relationship is beneficial for both parties.  Patients with chronic disease have improved quality of life, functional, and emotional status when doctor-patient communication is functioning well (Theofilou, 2011).  Patients who have limited agency and are unable to speak for themselves may be given a voice through a healthy relationship with a provider who cares (Shannon, 2009).  In turn, providers who spend time reflecting on provider-patient relationships tend to have lower stress and increased levels of empathy (Battegay et al., 1991).  Both Rachel and Dr. Andrews benefit from his attention to their relationship.

What can be done to foster a positive provider-patient relationship?  One of the keys is maintaining a patient-centered outlook with good communication (Fong Ha & Longnecker, 2010).   Collaborative communication, which integrates the patient’s perspectives and input, and conflict resolution are particularly important.  Patients report that the extent to which they feel their provider is listening to them is also a key determinant of relationship quality (Jagosh, Boudreau, Steinert, MacDonald, & Ingram, 2011).  In other words, if Rachel feels that Dr. Andrews is really listening to her, and actively communicating with her to increase her sense of agency surrounding her care, she will feel cared for and experience the benefits of a strong doctor-patient relationship.

How can you determine how the provider-patient relationship is going?  First, do a self-check.  To what extent do you feel like you understand your patients as "a whole person” rather than a diagnosis or a disease?  How often are you using active listening skills, such as reflective statements and clarifying questions?  What does your gut tell you about the relationships you maintain with your patients?  All of these questions are important – remember that relationships are always a reciprocal two-way street.  The way you feel about your relationship with your patients can tell you a lot about the state they are in.  More formal assessments are also available.  In 2012, a systematic review of 19 instruments assessing the doctor-patient relationship was published (Eveleigh et al., 2012).  Appendix 2 in the article provides a concise table summarizing the characteristics of the different measures.  While many of these measures are primarily utilized for research purposes, providers may find clinical utility in a more formalized assessment of the provider-patient relationship.
How can you determine how the provider-patient relationship is going?  

Most – if not all – providers would agree that maintaining effective communication with their patients is important, but even when the desire is there, barriers still exist to making this relationship a primary focus of treatment.  First, the pressure to see more patients in a shorter amount of time, coupled with patients’ increasingly complex presentations, can leave providers wondering how they could possibly fit more into their already packed encounters.  Second, opening oneself up to patients’ physical, emotional, and spiritual pain requires vulnerability on the part of the provider and risk of personal hurt or burnout. 

A few suggestions can help with these concerns:

• Simple strategies like making eye contact with patients and repeating patients’ words back to them can help with feelings of connection without increased time on the providers’ part.

 At a policy level, alternative payment structures should be explored to address the broader system issue of providers’ time.  

 To help with the potential burden of vulnerability, providers should engage in self-care and build strong professional and personal support systems from whom they may draw strength.  

 Providers who work in collaborative health care are uniquely posed to strengthen patient care while simultaneously diffusing the personal burden to be "all things to all people.”  Share the care!! 

References:

Battegay, M., Weber, R., Willi, J., Eich, D., Siegenthaler, W., & Luthy, R. (1991). Exploring the doctor-patient relationship reduces staff stress and enhances empathy when caring for AIDS patients. Psychotherapy & Psychosomatics, 56(3), 167-173.  doi: 10.1159/000288551

Eveleigh, R.M., Muskens, E., van Ravesteijn, H., van Dijk, I., van Rijswijk, E., & Lucassen, P. (2012). An overview of 19 instruments assessing the doctor-patient relationship: Different models or concepts are used. Journal of Clinical Epidemiology, 65, 10-15.  doi:10.1016/j.jclinepi.2011.05.011

Fong Ha, J., & Longnecker, N. (2010) Doctor-patient communication: A review. The Ochsner Journal, 10, 38-43.

Jagosh, J., Boudreau, J.D., Steinert, Y., MacDonald, M.E., & Ingram, L. (2011).  The importance of physican listening from the patients’ perspective: Enhancing diagnosis, healing, and the doctor-patient relationship. Patient Education and Counseling, 85, 369-374. doi:10.1016/j.pec.2011.01.028

Theofilou, P. (2011). Improved quality of life, functional and emotional status: The doctor patient relationship. Primary Health Care: Open Access, 1(1). Accessed online.  doi:10.4172/phcoa.1000e101


Grace Wilson is a PhD candidate at East Carolina University in Greenville, NC.  She currently works as a behavioral health provider at a rural FQHC, and she will begin her doctoral internship in Oklahoma in August.  Her research is on couples, the childbearing experience, and the doctor-patient relationship.

Tags:  provider patient relationship 

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