Respect for the Patient’s Significant Relationships
A special pattern of communication developed between Robin and Mark (her father) during his hospitalization. Each morning Mark phoned home to tell her about the animal picture on the sugar packet that he had saved from his breakfast tray. One morning Robin explained to Mark that she had a cold, and then, with 3-year-old directness, asked, “What do you have, Daddy?”
After a pause he replied, “I have cancer.”
She handed the phone to me and said, “I think Daddy’s crying.” Though he had never hesitated to discuss his illness with others who asked, he was deeply shaken by the weight of Robin’s question and the implications of his answer.
—S.A. Albertson1
Chapter Objectives
In this excerpt from a book portraying a young family coping with the fatal illness of a dad and husband, we suddenly see a moment when the patient breaks down unexpectedly, touched deeply by the implications of his beloved young daughter’s innocent question. The personal life of a patient exists in a web of activities and intimate or close personal relationships that help to provide status, meaning, support, and a sense of belonging to this person. Respect for this fact is immensely important if you are to reach the goal of maintaining the patient’s dignity and achieving a truly caring response during your professional interactions with him or her.
Some ways in which patients’ intimate and close personal relationships are affected were addressed in the previous chapter including:
loss of the familiar surroundings in which relationships are most easily nurtured,
loss of the patient’s capacity to participate fully in the usual fashion, and
This chapter beams attention on the patient’s relationship with family. However, the patient identifies who “family” is. For instance, many people consider their family to include a life partner outside of a marriage relationship, or extended families of cousins, uncles, aunts, and others related by blood and marriage (Figure 7-1). The patient’s relationships with close friends, long-time business associates, and others who are important to the patient often are also deeply affected. Special attention in this chapter is devoted to family members or other persons who become caregivers for the patient because their relationship is often dramatically challenged by the new situation. We offer suggestions about how and when you can become a source of support and encouragement to a patient and those close to him or her as they go through stressful and often hard times.
Facing the Fragility of Relationships
Any significant change in a person has the power to alter his or her status and roles in various close relationships. Like a mobile, when one person in a relationship changes, every component necessarily moves, and everyone has to pull together to find a viable new balance point. As patients become aware of changes, they often express concerns of abandonment or fears that they will be unable to contribute to their key relationships in meaningful ways. Whatever else characterizes close relationships during times of illness or injury, one sure thing is that there will be stress. Stress usually conjures up only negative feelings, and dictionary definitions support this meaning. But psychologists and others have probed the dynamics of what happens when the stakes are high or the chips are down: Stress is, at its core, a psychological motivator. Stress can have results that are destructive or that enhance individuals and relationships. Rambur and colleagues2 divide stressful experiences and conditions into negative outcomes of distress, and positive ones of eustress. In this section we ask you to consider some areas of potential distress with some suggestions for helping all involved to realize eustress opportunities as well.
Among the potential sources of distress during the fragility brought about by change are the patient’s concern that others will lose interest in helping to sustain his or her dearest relationships. In some cases the loss of interest is experienced more fully as actual disdain toward the patient. Loved ones and friends who are thrust into the role of caregiving often grapple with similar concerns.
Concern That Others Will Lose Interest
We all hope that our families, friends, and associates will take our problems to heart—fortunately they usually do. However, sometimes patients are unpleasantly surprised by the degree of indifference they feel many people show to the struggle they went—or are going—through. You know from your own experience that this feeling is not limited to persons who become patients. More generally speaking, it can be dismaying to realize that, no matter what momentous event you have been through or are still experiencing, the majority of people in your life do not want to know much about it!
Others’ apparent lack of interest may be due to many reasons. For instance, when there is good news to share, some might be jealous of your good fortune or feel that
REFLECTIONS
Almost everyone has experienced the apparent lack of interest in one’s good or bad fortune.
their security is threatened by your success; when the news is bad, some may be threatened by that, too, thinking, “There but for the grace of God go I.” For that matter, some really do not care much in the first place, even though it was easy and enjoyable to show interest when things were moving along in the usual familiar groove.
In extreme circumstances most people do turn more inward and become self-absorbed, and patients are no exception. Therefore, sometimes a distressed patient becomes extremely boring or demanding, driving others away. Friends and loved ones may assume that the patient no longer really cares about them and lose interest in maintaining the relationship for that reason. As one exhausted young wife exclaimed,
“I have turned into a service organization! I love Dick but I can’t keep this up. He was never demanding like this and I find myself coming to see him less and less because of it! He panics every time I begin to leave, no matter what else I have on my plate. He says he can’t sleep if he can’t see me. I know he’s scared but I am beginning to wonder if he ever really cared about me!”
The truth is that most people expect at least their family and close friends to be there for them when difficult times arise, and it is a shock when that does not happen. One of the authors recounts elsewhere the moment when a 20-year-old patient named David, who had quadriplegia as a result of diving into a shallow pond when he was 19, told her the bad news about his older brother Jim and David’s fiancée, Jane. Noticing that something seemed to be troubling David this particular Monday morning, she tried unsuccessfully to encourage the usually loquacious David into conversation. Finally she asked if he had been “on a weekend binge or something.”
“No. But I need a drink.”
“What do you mean, you need a drink?” [long silence] “David! What’s the matter?”
His shoulders sagged lower and I saw the flaps of skin on his chin and belly. . . . Eighty pounds lighter too quickly for his young skin to keep up with his diminishing bulk. He raised his head, barely, and whispered hoarsely from somewhere way back in his throat, or life, “Jane is going to marry Jim.”
For the first time ever, I was without words with David. He looked straight into my eyes, locked in that moment of recognition that we had both lost our footing and were falling.3
In your role in the health professions, sometimes you are deeply moved by a terrible event in a patient’s life, and, like the therapist in this excerpt, you feel stunned into not knowing what to say or do. She probably did the right thing just then by letting a heartbroken David see that this news was difficult for her to hear because of the enormity she knew it held for him. Later he told her that the tears in her eyes convinced him that she really cared. But as a professional caregiver, one can never be quite sure that the patient will be able to acknowledge support or even feel supported. Over the years the authors have learned never to be surprised when a patient suffers a profound emotional blow due to a breakdown of an important relationship, and to expect that at times the spillover is to distrust anyone to “stay in there” with him or her.
However daunting it may seem, it is always worthwhile to try to offer comfort and hope in such situations. For instance, if you see it coming, you can try to help prepare patients for a disappointment they might encounter if their expectations regarding important relationships seem unrealistic. Just by talking directly to the patient about an obvious absence of someone who previously was present on a regular basis may give the person an opening to discuss his fears or the reality of what is happening. Of course, to pry deeply into the particulars of a patient’s intimate or close personal relationships (or the apparent increasing dissolution of one) also can be an unwelcome intrusion into the patient’s privacy if the timing is not right. The point is that gentle probing may lead to an opportunity for the patient to talk through and think more expansively about the situation. In fact, sometimes allowing a patient to talk about family, friends, or other social contacts will help him or her start remembering things about the relationships that are treasured and help the patient’s focus to turn to strengthening those relationships during this unusual time.
Family members, partners, or friends who become caregivers often go through their own worries about whether others are losing interest in the patient or are becoming indifferent to the negative stresses on the relationship the patient and caregiver(s) are experiencing. Their concerns are founded on their observation that longtime friends and associates are backing off. This seems to be especially true in situations when the one being cared for has undergone a serious and long-standing change in appearance or abilities.
The social functions and activities that partners, families, and friends enjoy with others often dwindle, isolating the patient and caregivers from familiar sources of enjoyment and their feeling of belonging within their larger communities. The loss of a job can further distance them from longtime associates and patterns. For many it is easier to stay away than to face the hard realities with the affected persons. Internal divisions within families also may erupt, often over differing hopes and expectations about who will take responsibility for various aspects of caregiving. The patient may begin to feel as if he or she has caused all the distress and withdraw further from contributing to the vitality of key relationships.
Shunning by Others
Unfortunately, a special burden falls on relationships when the patient has a condition that carries a social stigma of some sort. Loss of a social life may be accompanied by a loss of status. In most such cases what appears to be a loss of interest may be an even deeper disdain and rejection. People who have a diagnosis of AIDS are prime examples of such a group who (by virtue of their illness) may lose their social life or job security. Although great strides have been made in the United States and elsewhere to educate about AIDS, and laws and policies have been put in place to prevent discrimination against the person and family, this disease still has the power to marginalize patients and their loved ones from their communities and important relationships.
Even as we write this book, a 13-year-old boy diagnosed as HIV positive was barred from a private school on the basis that he was a threat to the other 2000 students in spite of his being a responsible adolescent with parents who fully support and are parenting him through this difficult condition. This is putting great strain on not only the boy but also his parents, who have become a target of hate mail and accusations by other parents. Suspicion or confirmation about the source of an HIV infection may be knowledge that some people close to the patient and loved ones cannot accept.
AIDS is by no means the only condition associated with societal attitudes that may be informing why others appear to be losing interest in a patient and those in close relationship with him or her, or worse, shunning him or her. In Christina Lee’s excellent book, Women’s Health: Psychological and Social Perspectives, she points out that depending on their environment, women may be expected to be ashamed of reproductive conditions such as premenstrual syndrome, menopause symptoms, infertility or postpartum depression, obesity, or physically “disfiguring” conditions that lay outside the norms of beauty, and of age-related symptoms.4 Persons who have undergone abortions or births outside of marriage can be shunned, even by those who were previously close to the person. Sometimes people close to the patient are also expected to feel ashamed for accusations that they had a role in allowing, causing, or worsening a patient’s predicament. An example was relayed to us by a colleague who was teaching a 3-week summer course in another city when her husband had a serious heart attack. She recalls the following conversation upon hearing the news that her husband was in the cardiac intensive care unit:
Cardiologist: Your husband has had a serious heart attack and is in the cardiac care unit.
Woman: Oh no! What happened?
Cardiologist: [Explains some medical details.] Was he well when you left?
Woman: He seemed fine! We have known his heart is bad but we thought it was under control since he has been under your care. [More questions about his condition.]
Cardiologist: You know he has trouble staying on his diet. Has he been eating correctly?
Woman (still shaken): I think so! I’ve been gone for 3 weeks but . . .
Cardiologist: Oh, yes. Husbands often eat things they shouldn’t when their wives are gone.
The woman said that whether or not the doctor was intentionally trying to shame her for not being there when her husband had a heart attack, just by virtue of that conversation she was afraid she would be shunned by his professional caregivers when she returned.
What can you do in your role to help decrease the deleterious effects of others’ loss of interest or shunning of the patient or loved one?
Some straightforward suggestions include:
Facilitate contact with patient and/or family support groups of similarly affected persons.
You may think of other ways to decrease the distress related to both patients and their loved ones who are concerned about real or imagined loss of interest by others, or who are feeling shunned and therefore increasingly isolated.
Weathering the Winds of Change
Patients also justifiably worry about other relationship-related effects of serious illness or impairment from injury. Unfortunately, the change a person undergoes during illness or injury may in some cases cause him or her to become almost a stranger to loved ones.5 In extreme cases, the established patterns of old relationships becomes unrecognizable in the present situation. For example, a spouse who sustains a traumatic brain injury may become like a child; a long-time business partner who becomes mentally ill may become suspicious or abusive toward family, trusted associates, or clients; or a young man known for his bravado may become fearful of hanging out with the guys after a heart attack, convinced they will see him as a has-been.6
However, usually the changes are more subtle, like a chill wind that slices through an otherwise refreshing fall breeze, sending an unexpected shiver of worry across all those in the relationship. One man, a physician named Owen, writes insightfully and sensitively about his increasing sense of disorientation, dread, and fatigue as he watches his wife of almost 30 years, Lezlie, succumb to a fast-growing (and spreading) ovarian cancer—and his inability to “fix it,” even though she is in one of the best hospitals in the world where he is a respected physician. He sees the person he knew during their many years together slipping away from him as her symptoms and complications take their toll on this happy family. These sources of suffering are compounded by his guilt when Owen begins fantasizing about a beautiful nurse named Natalie who is one of his wife’s professional caregivers:
So it occurred to me then that this was part of something that had been willed . . . perhaps ordained . . . that Natalie and I would become lovers. There would be this transition as there might be—at least in fictional accounts—when bereaved husbands fall in love with their late wife’s caretaker . . .
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
