The Power of Family
by William G. Hoy
While wearing a scarf made from my Scottish clan’s tartan, I write these words having spent the day in the land of my ancestors: the Isle of Hoy on the Orkney archipelago off the northeastern coast of Scotland. Our tour guide on Hoy confirmed the likelihood of the “family lore” of decades: that my great-grandfather made his living as a pirate (actually, probably a mercenary) and got himself deported to Canada for attacking a ship of the British Crown in the middle of the 19th century. Overall, what I have discovered are relatively benign “skeletons” hanging in the family closet!
With glee and near pride, our family actually tells these stories—many of them fabricated, no doubt—about Great Grandpa Hoy as we imagine the kind of shenanigans he pulled. The tales of a “pirate in the family” served my kids well when they transferred in middle school from California to the Crawford, Texas schools whose mascot is the Pirates.
Professionals and volunteers working in hospice, congregational care, hospital, social service organization, and virtually every other caregiving role recognizes the role of family in the equations of end-of-life and bereavement. However, as anyone working in this field for more than a few months can readily attest, the “skeletons” are often not nearly as benign as those in my family. The “shenanigans” in many families greatly complicate the care of the dying and stand in the way of effective grieving for those who are left behind. Here is how I think we can better understand and respond to some of these family issues.
Verbal wishes and assumptions. One family member (often a specific adult child) is sometimes closer to a dying parent than any of the other children. If the parent gifted this child with particular insights about care or wishes, others in the family might not believe those wishes were ever spoken. What I have found more frequently is not that the aging parent specifically stated wishes but rather, that the caregiving adult child assumes he or she knows the parent’s wishes by virtue of having been around more. While this might be true, it can be a dangerous assumption. Remember that some dying elders would rather tell anyone other than the caregiving family member what he or she really wanted, frequently out of a misguided attempt to protect the person who had done so much. This is where the wisdom and experience of a counseling professional (social worker or chaplain in most health care organizations) can be so beneficial.
Of course, any of these issues are really rooted in a lack of communication in the family. Sometimes because of age-old conflict, some family members do not know how to talk to each other…at least in a civil tone. Coaching family members on asking open-ended questions without “leading” can be a powerful way to build trust. “What do you think mom would want us to do?” or “How do you think dad would have managed this?” can be helpful questions in families where lack of communication is present. Of course, these questions will do little to diffuse skepticism if one family member mistrusts another but they can be a place to start. What I have tried to teach my patients is the power of asking opinion questions (“What do you think…?”) instead of making statements and issuing edicts.
The “daughter from California” (with apologies to readers in California). The literature on end-of-life care would not be complete if Molloy and colleagues (1991) had not published their article naming the phenomenon we have all observed: the daughter from California (or Halifax, or New York, or Vancouver) syndrome. Wherever the caregiving professional practices, he or she has undoubtedly experienced the adult child (though it could be a sibling) who flies in from across the country under the assumption that he or she knows best. Sometimes, the perspective of the spouse and adult children who are present and have done the “heavy lifting” of caregiving for months or years is completely ignored by this “savior” from another place. In my experience, this is especially likely to happen when the relative from out of town comes from a region where reputation might indicate a higher level of medical sophistication (such as a rural family in Tennessee being “invaded” by a largely-uninvolved relative from either coast.)
As caregiving professionals, this is the place where our advocacy skills are most tested. We must often fulfill the role of mediator in such situations, especially when the relative from out of town wants to set aside the plan of care in hope of some alternative treatment. I have found that almost always, this “long lost” relative desires retracing steps that were followed days or even weeks earlier, desiring a treatment protocol that has already been tried in vain or that has been considered but dismissed because of the side-effects of the treatment. I cannot recall a single case where the “daughter from California” actually pointed out a workable treatment regimen that had not already been considered by the local professionals in consultation with the patient and family.
Colleagues who miss important patient choice clues. As frequently as I have met the “daughter from California,” I have interacted with other professionals (often physicians) who are so sure their perspective is right that they “run over” patient wishes. My own father-in-law desperately tried to tell his internist that he knew he was at the end of his life and he wanted no more “heroic” efforts to resuscitate him. For whatever the reasons, this doctor was not hearing it, in spite of a doctor-patient relationship that had endured 15 years.
Instead, the physician ignored my father-in-law’s pleas, telling him instead what “you have to do.” This physician should have been listening more and speaking less, perhaps responding to my father-in-law’s comments with questions like, “I can see you have some misgivings about this; could we talk about what you want to do? I would like to hear what you are thinking.” Five days before he died, my wife and I simply asked her dad, “So we understand you had a bad night last night; what do you see ahead?”
We are eternally grateful we listened to what he said and that his wise cardiologist was listening and did respond to his patient’s concerns, entering into a meaningful dialogue about what efforts should or should not be used the next time his heart entered the arrhythmia that would eventually end his life.
Vastly different beliefs and values. A major source of conflict in families has to do with shifting values and beliefs. While at one time, a health care professional could generally depend on the religious beliefs of the parents being shared by the adult children, this is not the case now in many families. Some family members have changed faith communities and are no longer interested in following the customs of parents. An adult child whose experiences or education has made him or her more open to consideration of multiple perspectives and value systems might be more—or less—open to dialogue about health care issues than an aging parent.
Fortunately today, health care chaplains can be an invaluable resource to the rest of the health care team. These professionals generally hold the most comprehensive master’s degree of anyone on the team including 90 semester hours of post-baccalaureate education. Moreover, most health care chaplains have earned significant levels of clinical training in supervised counseling or clinical pastoral education. An increasing number also hold specialized or board certifications in palliative care or certification in thanatology from the Association for Death Education & Counseling (www.adec.org).
By virtue of their training and experience, these spiritual care professionals are not only excellent counselors in both spiritual and non-spiritual issues, but they also provide extraordinary consultation to other members of the health care team in understanding diverse beliefs, customs, and values (Pulchalski, et.al., 2009). They can frequently help social workers, nurses, and physicians make sense of the belief conflict in families.
Lack of trust in professional advice. A physician friend of mine recently remarked, “Thanks to WebMD® everybody thinks he’s a doctor nowadays.” The dilemma expressed is shared in every caregiving profession; patients and their families have become far better educated due to the proliferation of health care information on the internet. This can certainly improve communication and care but it can also mean family members are far more ready to second-guess professional training or to completely dismiss clinical experience. My colleagues in funeral service, for example, have seen this for many years as families seek to arrange their own memorial services only to discover in the midst of the process just how many logistical details can get overlooked.
Today, I believe we must earn the right to offer our expertise and that includes a great deal more time getting to know the patient and the family system. A thorough assessment with open-ended questions might be the most important part of our treatment plan; this strategy is far more likely to elicit dialogue, build rapport, and uncover issues of concern.
Moreover, it seems vital to become confident enough in our clinical competence to offer insights, guidance, and advice without getting our feelings hurt when patients and family members ignore our best experience. Some of the phrases that might help in working with families include: “I certainly do not have a crystal ball but my clinical experience suggests….In what way does that resonate with what you are expecting?” or “A lot of families struggle with this; one way I have seen it get resolved is by doing….How do you think that might work for you?” The secret to our effectiveness might be as we offer our best wisdom and then indicate a willingness to continue the dialogue.
Families may or may not be more complicated today than a generation ago but at least some family members are almost certainly more willing to talk about their concerns and second guess professional clinicians. Families will always be part of the caregiving milieu and we would really want it no other way. Nevertheless, as families continue to morph and change over the next decade, health care professionals’ patience will surely be tested. Remembering that our role is to care for and advocate for patients and their families will help us keep focused in performing the sometimes thankless tasks of taking care of others.
Molloy, D. W., Clarnette, R. M., Braun, E. A., Eisemann, M. R., & Sneiderman, B. (1991). Decision making in the incompetent elderly: "the daughter from california syndrome". Journal of the American Geriatrics Society, 39(4), 396-399.
Puchalksi, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., Chochinov, H…. & Sulmasy, D. (2009). Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine, 12(10), 885-904. doi: 10.1089=jpm.2009.0142
For more than three decades, William G. Hoy has been counseling with the bereaved, supporting the dying and their families, and teaching colleagues how to provide effective care. After a career in congregation, hospice, and educational resource practice, he now holds a full-time teaching appointment as Clinical Professor of Medical Humanities at Baylor University in Waco, Texas.
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