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A Couple With Cancer: Conflicting Wishes, Joint Decisions

From the Department of Oncology, Flinders Medical Centre, Bedford Park, Australia.

Address reprint requests to Bogda Koczwara, MD, Department of Oncology, Flinders Medical Centre, Flinders Dr, Bedford Park SA 5042, Australia; email: bogda.koczwara{at}flinders.edu.au.

THE CASE

JULIE AND ROBERT arrived at the hospital from a small country town concerned about Julie’s swollen abdomen and her inability to eat. Scans demonstrated ascites and bilateral ovarian masses, but a small liver lesion and a thickened stomach wall did not fit with a typical ovarian cancer. After discussing the likely diagnosis of cancer, possibly gastric, the gynecological oncologist deferred surgery, organized an endoscopy, and requested a medical oncology opinion.

The couple first met the medical oncologist (BK) an hour after the endoscopy, at which time Julie was still quite groggy from sedation. The oncologist promised to return in the evening to continue the discussion. The endoscopy report read simply "three ulcers identified, biopsies sent," but the gastroenterology fellow was concerned. The high likelihood of gastric cancer was mentioned to Julie, but it was doubtful whether she would remember anything that was said. The call from pathology came shortly after 6 PM, confirming the suspicion: gastric cancer, high grade.

At the next consultation, Julie seemed wide awake and calm. The cropped hair around her face made her look younger than her 40 years. Her husband, Robert, was leaning forward in the chair beside her, his face a picture of intensity and concern. The oncologist spoke slowly and carefully. She mentioned palliation (not cure), symptom control, and chemotherapy. Robert interrupted, "But surely it would be better to cut it all out? Why don’t we go for surgery?" Julie lay motionless and speechless. When the discussion moved to the merits of chemotherapy versus surgery, Julie suddenly interrupted. Leaning over to Robert, she said, "Don’t you understand? There is no point. This is the death sentence!" Robert persisted in his search for curative treatment, "But surely we can just get rid of it. We need to talk to the surgeons. When can we see the surgeon?" Julie looked sullen.

The oncologist resumed the discussion. "Maybe the best way to move forward is for you to meet with the surgeons and talk about the risks and benefits of different treatments," she said. "Also, it may be beneficial for you to have some time to adjust to the news and think about your priorities." Julie interjected, "What is the point? So I can have the few months of the hell of chemotherapy and then die? Why should I even bother?" Robert was now silent, his head buried in his hands.

A Couple as a Patient
Who is in need of counseling and compassion? Julie? Robert? Both of them as a couple? As a family? Suffering and distress in this case clearly impacts more than just the patient. A diagnosis of advanced cancer poses a threat to the couple. The reaction to the news comes from the couple as a whole, and the decisions regarding treatment choices are often made collectively. Given the large body of empirical evidence demonstrating that the distress of spouses of patients with cancer is just as great as the distress experienced by the patients themselves,^1,2 both the patient and the spouse warrant attention and, potentially, treatment. Furthermore, the support, or lack thereof, from the spouse can have a dramatic effect on the coping of the patient.³

It has been well demonstrated that support from the spouse, family, and friends can greatly improve coping with advanced stage cancer. Conversely, lack of support and aversive support, such as friends and relatives making too many demands and/or being critical, impairs patients’ adjustments to cancer.³ Spouses of patients with cancer have an important role. From a practical perspective, they may need to assist with informational needs, medical decision making, care giving, and financial burdens.⁴ In addition, spouses are often the most immediate providers of emotional support to patients with cancer. Not surprisingly, patients who perceive more spousal support are more likely to use more positive coping strategies, compared with patients who perceive withdrawal or criticism from their spouse.⁵ Clearly, having a positive marital relationship will enhance coping with cancer. But do both partners cope similarly when one of them suffers with cancer? In addition, how do their coping style and their beliefs impact the decision-making process?

Differences in Coping
It seems that partners in a couple often have similar coping responses,¹ but differences can occur, as is illustrated by our case. Not surprisingly, a greater amount of distress occurs if marital partners use conflicting coping strategies. This may occur as a result of one partner trying to protect the other from distress. Overprotection and "buffering" to protect the partner with cancer from bad news can have a detrimental effect and, in the setting of great distress, can be associated with a negative effect on marital satisfaction.⁶ Three models of couples’ coping have been identified: a couple acting as a unit; two partners acting independently and on equal terms; and partners acting separately, with one partner in a subordinate position.⁷ The success of coping varies, depending on the model employed, with greater satisfaction generally associated with the first two models. This may be because, in the third model, one partner surrenders his or her wishes to the wishes of the other partner. The initial consultation with Julie and Robert suggests that their interaction may fit the second model, with Julie and Robert voicing conflicting preferences.

But, is this model going to be maintained? Is Robert going to accept Julie’s resignation? Will Julie follow his desire to fight?

At the initial stage of facing a malignant diagnosis, a couple may not have yet developed a common strategy for coping with a life-threatening illness and the roles that each partner should play in such a situation. The role of a patient and the role of a spouse may call for somewhat different reactions. The diagnosis of a life-threatening illness can be perceived as an immediate and direct threat to the personal integrity of the patient, which may result in a greater sense of distress, anxiety, overwhelming dread, and initial passive response. The patient may feel responsibility and guilt about how her illness and her ability to cope with it will affect her spouse, children, extended family, and friends. The spouse’s reaction does not carry with it the immediate personal threat and thus may allow for earlier mobilization of constructive strategies and a desire to "act." Spouses often perceive their role as those who are to provide motivation, hope, and a positive attitude to act and "fight" the disease.⁸ This may be further accentuated by the spouse’s frustration with the inability to do much else and may be reflected in their greater need for information and action on behalf of the patient. While usually beneficial, the desire to act may be ill timed. In extreme cases, it can lead to pursuit of toxic and ineffective treatments and loss of quality time with the family.

Further, the needs of patients and their spouses are not constant. Needs vary, depending on the status of the disease, and they may evolve over time with periods of incongruence in coping between partners.⁹ The period immediately following the initial diagnosis is likely to be one of the more demanding times. The patient and the spouse may be trying to adjust to the diagnosis and yet they are faced with the difficult challenge of making decisions that may have profound impacts on the rest of their lives. It is likely that the interactions between partners at this time will significantly influence how the couple makes decisions regarding further treatment.

Differences in Information Needs and Decision Making
Little is known about how couple dynamics influence the process of decision making. Although it is well established that one’s social circumstances have a profound impact on the desire to undergo aggressive treatments for cancer,¹⁰ much less is known about how the presence of a family affects the communication process itself, the information needs, and the ensuing process of decision making. Although it is generally assumed that supportive spouses have a positive effect on patients’ decision making by increasing information retention and by providing emotional support during the discussion, little is known about how much spouses’ preferences impact the process of decision making and how conflicts between spouses’ and patients’ preferences are resolved. Limited data that compares the preferences of patients and their spouse demonstrate a moderate degree of incongruence between them.¹¹ Even less is known about the difference in priorities at different stages of the disease and what happens if conflicts occur. It is possible that disagreement within the couple can lead to decisional conflict and greater anxiety. As the decision-making process is taking place–not within the doctor-patient dyad, but rather within the doctor-patient-spouse triad–the complexity of the process and its implications increase greatly. Further research into the intercouple dynamics of decision making may offer further insights into this process.

Back to the Case
The differences in responses, reactions, and communication styles to the news of the advanced-stage cancer diagnosis demonstrated by Julie and Robert are striking, but not unusual. They are both going through the process of personal adjustment, they both require support and assistance, and the strength of their relationship can help them cope with Julie’s disease. Unfortunately, there are currently no empirically validated treatment approaches for improving marital communication at the time of cancer diagnosis. Thus, it is left to the clinicians’ judgment as to how best to assist the patient, the spouse, and the couple as a whole. This may be achieved by providing time for the partners to adjust and deciding not to discuss things for a while, sometimes away from the rest of the family; by providing an opportunity to discuss information when both partners are ready; and by checking with both partners on their understanding of the information and their comfort with the decision-making process. Couples bring with them the shared history of ways of approaching problems in the past. Exploring their shared history, their individual strengths, and their strengths as a couple may provide an opportunity to rebuild confidence in the future and confidence in each other, as part of one team. Facilitating the discussion between the two partners may offer some scope for negotiation of common goals and clarification of whether the goals can be achieved. Acknowledging that both partners’ concerns are important ensures that not just the dominant voice is heard and followed. This may be achieved by allowing each partner to talk freely about fears, concerns, and priorities before any decision choices are discussed and negotiated.

Assisting couples in their decision making is not always an easy task. Exploring the shared past takes time, and it also takes time to develop the sense of trust between the couple and their doctor. The disagreement between partners may force the doctor into the dilemma of whether to take sides, a strategy that may alienate and undermine the trust of one partner. The couple’s fear of the future and desire to present a "strong united front" may lead to their desire to avoid discussion and "just get on with the treatment." It is important for the oncologist to persevere in exploring concerns of both partners when the opportunity arises, without forcing the issue or succumbing to the frustration with the overall process of communication.

Not every couple will reach a clear consensus. In some cases, the physician is left with an uncomfortable feeling of doubt about whether the decisions would have been the same if one were dealing with separate individuals and not a couple. While an opportunity to learn the answer may or may not arise, one should strive to provide support and care to both partners, irrespective of how one views their decisions.

Postscript
The discussion lasted until late that night. Julie and Robert talked about what they would tell their two children (aged 10 and 13 years). Robert wanted to drive home that night to be with the family. Julie averted her eyes and started crying. "How am I going to face them?" The oncologist suggested that she stay in the hospital overnight. She took up the offer with a sigh of relief.

Julie and Robert agreed to meet with the oncologist after a few days to look at the available treatment options. A surgeon advised against surgery and Julie and Robert were both keen to look at other treatment options. Robert stated from the beginning that the treatment would bring cure – that is, any talk of death was "off limits." Julie, weakened by rapidly reaccumulating ascites, wanted "just to feel better." She started chemotherapy shortly thereafter.

Repeated attempts to explore Julie’s thoughts about her future were unsuccessful. She was weak and tired and not willing to talk at length. She had delegated to Robert all decision making and communication regarding her illness. Her health continued to deteriorate and she spent a considerable amount of time in the hospital, while Robert explored possible alternative treatment. No other relatives, including the children, would visit Julie in the hospital. After Julie’s discharge to her home, Robert would be the one to answer phone calls; contact doctors, nurses, and alternative medicine practitioners to request tests; check results; and ask questions about treatments.

Two weeks after chemotherapy commenced, Julie and Robert discontinued standard medical treatment to pursue alternative treatments. Robert would call the oncologist intermittently to ask questions, but invitations to meet in person with him and Julie, although initially accepted, would subsequently be declined. Any discussion of the possibility of death was "off limits." As a couple, they chose to "fight."

It is a challenging question as to whether it was more beneficial to support their adoption of a joint strategy of seeking aggressive treatment so that they could be united as a couple. Would it have been better instead to further probe and explore their differences and promote Julie’s initial desire not to pursue aggressive treatment? This is a difficult and complex issue, and answers may differ from case to case. What remains constant is the realization that a couple’s communication regarding cancer and its treatment is a quality of life challenge for the involved physician, the patient, and the couple.

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Submitted March 7, 2002; accepted September 18, 2002.

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