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THE IMPORTANCE OF CULTURE

Each family has its own culture, values, fears, and history that cannot be discovered through what can be witnessed on the surface. Instead, like icebergs, each patient's and each family's real stories lie below the surface. The family in front of you is not your family, not the family you may have worked with yesterday; nor will it be the family with whom you will spend time tomorrow. Each individual, each family, has its own unique constellation, its own distinctive fingerprint.

Wisdom comes from exploring our cultural traditions, our rituals within the family. It comes from exploring what we are afraid to ask. It comes from making lists of questions to ask health care professionals who can explain what terms like “intubate,” “peg,” and “withdraw” all mean. When we have knowledge, we make better decisions. We make better choices. Unlike choosing wallpaper, with EOL choices, we often do not get the chance for a “return” or “re-do.” There can be permanent unintended consequences from our decisions.

MOBILES AND SHATTERED GLASS

I believe strongly in the usefulness of metaphors in working with patients and their families. One helpful metaphor is the family system as a mobile. I ask the patient/family to imagine a mobile: colorful objects
hanging in balance, generally pleasant to the eye, and fun to play. But a mobile is delicate and can be broken if hit too hard. I remind families some mobiles hang outdoors, some hang indoors, and some can be created in our own minds.

I encourage them to imagine a family mobile with each member in their family making up the “parts:” spouses, partners, children, parents, grandparents, aunts, uncles, relatives, significant others, and friends. I remind them that even those individuals who were once part of the family mobile and have died continue to maintain a weight on the mobile, perhaps lighter, but still a weight that needs to be counterbalanced. I remind them some weights can, after death, be the heaviest parts of the mobile.

Each family and every mobile is unique. As professionals, we need to remind ourselves that families need to be assessed and assisted based not on our perception of the mobile and how the parts are related, but rather on how it is described and perceived by those on the mobile. Many mobiles are based on relationships far beyond bloodlines. Listen to the stories—the stories below the surface; the stories that remain unspoken.

Imagine a family mobile with all of its parts constantly changing and in process. The parts change constantly prior to a family member's diagnosis of an illness, during the chronic phase of the illness, and if things do not go well, as the family member dies.

Often a family member of a person in crisis will say, “I just want our family to be like it was before”—but this is not possible. When one person on a family mobile is diagnosed with an illness—regardless of the prognosis—the person, and the family mobile, will never be the same.

To mix metaphors: “Who are the 'plate spinners' on this family mobile?” If we think of the Ed Sullivan television show of years ago, we can visualize the person on the stage running around, trying to keep numerous plates spinning, while yet still reaching for more plates to spin. Who are the individuals on the mobile who spin all the plates, choose to spin none or only a few, or are not engaged by other members comprising the mobile to spin plates?

How, as professionals, can we help families share the load, divide the responsibilities for spinning the plates, or adjust to role changes, which I believe is one of our major tasks? Each of the parts (family members) will have different needs. Through an interdisciplinary approach we have a much better chance of helping families share the plate spinning. With our support, hopefully, each part can be empowered to spin something, even if only for a little while.

Talking about and completing a health care directive in advance can truly help members comprising the family mobile to navigate their mobile balancing act. With meaningful conversation, in advance of medical crises, each part of the mobile can develop meaningful understanding, so if things do deteriorate, each member knows what the patient wants. As mobiles evolve and take on new shapes, there are always winds that affect their directions. Sometimes the winds are very strong, while other times they are light and barely exist, yet blow when families and friends are not expecting them. Although each part of the mobile will respond to a diagnosis in his or her own way, some more openly than others, do not expect each “part” to not have changed shape in some way. Helping patients and their families complete a health care directive during anticipatory mourning, or review what is in place, provides a wonderful “mobile opportunity.” The mobile, as mentioned before, will never be exactly the same!

After a diagnosis, due to openness, sharing, flexibility, and seeking new ways to cope, most family mobiles regain a new way of balancing. However, a few mobiles get severely banged around and find it more difficult to find a new way to maintain their balance. The question as professionals we want to continue asking ourselves about the mobile is, “How do the 'parts' relate?” We know the independent parts that make up mobiles are unique, yet these same parts need to remain interdependent as they balance the family constellation. When I was young and my mother was diagnosed with cancer, she was the part with the illness. She was the part that was affected directly, but in turn each of us in the family, each of the other parts, were also affected.

Each family mobile, and the individual weights of the mobile, change after a diagnosis. How the balancing will take place is based on many factors. What is the quality of the relationship between the parts? What are the roles within the family? What are the family rules and expectations, and the family strengths and weaknesses? What developmental milestones have been achieved, or not, by the family? What are the immediate and long-term needs of the family? What is the family's communication style and how flexible are its members? What are the ages of the parts of the family mobile? What are their cultural and ethnic origin, spiritual or religious beliefs, and financial resources? What constitutes their primary and secondary world views of their illness? Have they considered plans for a funeral, memorial service, cremation, or burial? What choices have been made regarding organ or tissue donation? Where are members of the family mobile living geographically? Finally, what are their previous experiences with death and loss?

We can learn a great deal by asking just two simple questions. First, we ask the patient to share how he/she dealt with their last crisis. Then, we ask about how the family coped with the last crisis. These questions will provide insight regarding how they will cope during this current crisis, and elicit which tools in their toolbox have or have not been helpful? What you see is not always obvious. It is vital to explore what is below the surface.

To mix metaphors yet another time, life will always have a different window through which to look. When a window is broken, the glass, even
if glued back together, will never be the same again, no matter how hard one tries. As professionals who work with patients and families, we know that when significant events take place in people's lives, they will never be who they were before. Major transition points shatter the glass. Being diagnosed with and living with an illness or dealing with the dying process is constantly shattering and creating new windows for individuals and their families.

It is through constantly changing windows that the families with whom we work perceive the world. Some individuals and families think they can quickly find all the pieces and glue them back together as they were prior to being diagnosed with an illness. Others learn some of the glass will always be blurred. Life-changing events challenge our individual and family coping skills and force us to re-examine our priorities.

 
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