Saying Goodbye: How families can find renewal through loss, an excerpt

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by Barbara Okun, PhD and Joseph Nowinski, PhD

One of the first tasks facing families upon receiving a diagnosis is to learn more about the illness or disorder that faces them. There are many ways to do this: by visiting Internet web sites; by talking to others who have experienced the disease; by contacting associations such as the American Cancer Society and other disease-specific organizations; and by asking questions of the medical team that is working with the patient.

With respect to the last of these options, the family must be prepared to enter and then navigate its way through what we call the “medical maze.”

You’ll need a point person

In today’s health care environment, assertive advocacy is necessary in order to successfully navigate the medical maze. Ironically, this maze owes its existence in part to a positive development: the emergence of an increasingly diverse and sophisticated armamentarium of medical treatments and technologies. It also owes its existence, however, to a fractured health care system that remains lacking in coordination and whose hallmark is a myriad of health plans which differ vastly with respect to the services they cover.

Unfortunately, many people—including a growing number of older and widowed men and women—are not in a position to fully comprehend the information they get from multiple sources, to understand the options they may have, or weigh the potential ramifications of each of those options. Being able to turn to a knowledgeable family member for help with this is no small blessing. For that reason we recommend that the family designates one or two members as “point persons.” Often this role emerges naturally. First-borns, for example, from an early age often play a role within the family that is much like that of a point person. They may look after younger siblings, help out more with household tasks, and generally be responsible. In contrast, in large families middle and youngest children typically do not move into such roles unless they are pressed to do so.

Regardless of whether they emerge spontaneously or are chosen by the family through consensus, it is the point persons’ responsibility to become knowledgeable in all of the above areas and to present information to the family as a whole for their edification and so that the ill family member can make informed decisions about his or her treatment.

This is no small responsibility. There will likely be much information to sift through, and many decisions to be made. However, if the decision-making process is shared it can unify (instead of possibly dividing) the family. The point person or persons must therefore be prepared, in terms of time and energy, to take on this commitment. There may be family members who would like to play this role but cannot do so because of competing commitments and priorities.

At this stage the major focus is on the person with the disease and the goal is to marshal resources to cope with that disease. Anxieties, tensions, and feelings of frustration, all of which can arise during the long period of time that may be required to gather information, schedule appointments, and make decisions, can persist. At the same time each individual family member’s personal prior experiences with the health care system will color their view of the current situation. Those whose prior experiences have been largely positive will have one view. In contrast, those who have experienced frustration or disappointment will be viewing events through a different lens. It is important that families expect such differences and respect them as being based on experience. All views and opinions should be put on the table. Realizing that people can in fact have very different (and equally valid) perspectives based on their experiences forms the basis for working toward a consensus and building a base of support for how treatment will proceed.

By facilitating this process of gathering information, establishing respect for differing views, and opening communication, the family point person (or persons), can do a great deal to help reduce tensions. It allows family members to feel included while at the same time being able to carry on with the day to day responsibilities of their lives. This is especially important for family members who have families to tend to and jobs they cannot afford to be away from for significant periods of time. As information flows, and as decisions are made, a measure of relief is felt by everyone.

Don’t wait for them to call you

If medical test results are not communicated to you and your family in what strikes you as a reasonable amount of time, do not assume that this means everything is okay. On the contrary, we advise families to be persistent in telephoning doctors’ and clinic offices to learn the results of tests that are performed. Do not worry about how you are perceived by office staff. Some people are leery of being persistent or assertive, thinking they are being rude or overly demanding. They must keep in mind, however, that our health care system is dependent on volume as much as it is on quality. While the family understandably feels that their crisis is a high priority, it is only one of many cases on the caseload of the doctors they are consulting with. It is not that medical professionals don’t care; rather, efficiency demands that they have many patients to care for.

The family member with the diagnosis and/or the family’s point person needs to feel some degree of control of the process. We have found that establishing effective strategies from the outset will pay off in the long run. Some suggestions for talking with doctor’s and clinic offices include:

“I’m very anxious about my test results and need to learn about them as soon as possible.”
“I would like to have my test results transmitted as soon as possible to Dr._______ with whom I have an appointment on ___________.”
“Can you tell me how I can get my test results as soon as possible?”

By using the pronoun “I” in all of the above communications, you are simply taking responsibility for what you need and not communicating that someone else is at fault in any way.

Barbara Okun is a counseling psychology professor at Northeastern University.and Joseph Nowinski is a clinical psychologist, and previously was an Assistant Professor of Psychiatry at the University of California San Francisco. They are authors of Saying Goodbye: How Families Can Find Renewal Through Loss.

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