Using Coping Strategies Is Not Denial: Helping Loved Ones Adjust to Living with a Patient with a Palliative Diagnosis

Abstract

Background:

When a patient receives the diagnosis of an incurable cancer, their loved ones have to face the fact that life will change. Realizing that the time together is with someone who is going to die, loved ones have to cope with the situation.

Objective:

The objective of this study was to increase the knowledge concerning what forms of coping strategies loved ones apply when a family member is faced with an incurable cancer.

Design:

The study had a qualitative approach using in-depth interviews as data from a sample of consecutive loved ones. The interviews were audiotaped, transcribed verbatim, and analyzed using a manifest content analysis.

Results:

The main findings showed that the strategies used by loved ones could be categorized into four different areas: thinking that the death is far off in the future; hoping for an improvement; living in the present; and utilizing the family and personal network. The loved ones used these strategies in order to learn to live with the fact that their spouse had been diagnosed with an incurable illness.

Conclusion:

The study shows that the manner in which the coping strategies are used is individual and also depends on how loved ones can cope with the concept of a dying person with whom they are very close. When loved ones have a need for support outside their personal network, it is important to understand that this need is directly related to coping strategies and that it is not a result of denial.

Introduction

When a patient receives the diagnosis of an incurable cancer, the patient and his or her loved ones have to face the fact that life is going to change in many ways so that the grieving process for the expected death can begin.¹ Whether the loved ones' grieving process begins before or after death, they may need some support from both their own network as well as from the health care staff. They may need different support depending upon what type of relationship the loved one had with the deceased and if the grieving process is of a simple or a more complex type.^2,3 The structure of the family and social network can vary a greatly nowadays, because there are a variety of family constellations. This structure may also depend on whether family members live close or far away from one another.^4,5

The families and other loved ones have to cooperate in a network and find new ways in which to function and cope in a changed and difficult situation. They have to develop coping strategies in order to maintain daily life. Caring for or supporting a person whose death is anticipated in the near future is a unique situation, which calls for special coping strategies. Lazarus⁶ describes the use of coping strategies as the way a person thinks and acts in order to cope with a stressful encounter. Whether patients with cancer are treated in regular hospital wards, receive palliative care at home, or in special palliative institution, the health care staff interact with the loved ones in a variety of situations. They have to answer their questions, meet their expectations and their hopes about the treatment, and respectfully take in loved ones' desire to prolong the patient's life.

Significant concepts

“Loved ones” is an expression for those persons who are close to the patient whether they are spouses, significant others, relatives, adult children, or friends. Hope is a common and useful strategy with a positive effect on the quality of life. The definition of hope can vary but is an idea of a positive orientation toward the future.^7,8 Hope is different from denial. Denial is a psychological defense mechanism in which the person does not take in the existing reality and suppresses it. ⁹

The aim of the study

The aim of this study was to increase the knowledge concerning what forms of coping strategies loved ones use when a family member is faced with an incurable cancer.

Methods

A qualitative design was chosen to gain a deeper understanding of the different types of coping strategies used by loved ones of a dying patient. The study was conducted at an oncology and a urology clinic at a University Hospital in Western Sweden.

Sample

Participants were loved ones of patients who had died at the oncology and urology clinic. The consenting individual was informed of the study through a telephone call from a nurse or a social worker and was asked to participate in a face-to-face in-depth interview. In cases in which several loved ones were eligible for inclusion, the family member living with the patient was given priority, for example, a wife before others. Thirty-five persons were consecutively invited to participate. Three persons declined to participate and 12 failed to return the letter of consent, leaving 20 participants to join the study (57%). The persons who declined to participate all felt that they wanted to avoid talking about their experiences because it hurt too much.

Exclusion criteria were the presence of psychiatric disease, dementia, or unavailability of an interpreter, if required. However, there was no need to exclude anyone for any of the above reasons.

Data collection

Data were collected between April 2007 and September 2008. The interviews took place 1 year after the patient's death as we deemed 1 year to be a reasonable period of time for recovering sufficiently in order to talk about the bereavement process, yet still near enough to the time of death that memories would be clear. In order to ensure that was maintain throughout the interview, some key question were highlighted such as, “When did you understand that the disease was incurable?” and “How did you manage in daily life?” The interviews were conducted by the first author.

Data analysis

The transcribed interviews were analyzed using content analysis. By using an interpretive content analysis, the researcher gains a richer understanding of the meaning of the content.¹⁰

The analysis was performed in several steps. First, text relevant to the research questions was marked. Thereafter, meanings unit were identified and grouped into codes. These codes were then discussed, compared, and finally, labeled. In the last step, the codes were structured into subthemes and themes.¹¹

Trustworthiness

To ensure the trustworthiness and validity in qualitative research there are many aspects to consider. To ensure credibility, all participants in this study represented a loved one who had died at the oncology and the urology care unit 1 year before the interview took place. Despite the variation in age of the participants and their relationship to the patient, the results had many similarities. The in- depth interviews resulted in a rich content and ensured a satisfactory description of the coping strategies used by loved ones. To reduce preunderstanding from the investigator, the interviews contained questions to clarify the experiences of the participants. All interviews were transcribed verbatim. The interviews and analyses were done by the first author in close cooperation and discussions with the coauthor in order to interpret the results as objective as possible. Findings were validated by presentation to experienced nurses, doctors, and social workers. Any eventual differences were discussed and a common description was formulated.^12,13

Ethical considerations

The Regional Ethics Board in Gothenburg approved the study (680-06). No reminder of the invitation to participate in the study was sent, of respect for the grieving process of the bereaved. Declining to participate in a study of this kind must be respected.

Results

Characteristics of the respondent and of the illness time line

Approximately half of the participants in this study were spouses, one third were adult children, and the rest of the participants were siblings or friends. The majority of the respondents were younger than 65 and most still worked. The number of participants living alone was equal to the number of participants living with someone. The majority of the participants were women.

All patients had cancer, with the majority having prostate cancer or breast cancer. The majority of the patients had been ill for over 2 years and received treatment at different periods during the illness. Some of the loved ones even experienced periods during which they believed that the patient was cured. When the symptoms returned, they felt as if it was a new disease even though it was the original cancer that had reoccurred.

Various strategies for coping with everyday life

The loved ones in this study used various strategies to cope with daily life with the patient. A sense of hope was common to all strategies, which were categorized into four different areas; thinking that the death is far off in the future; hoping for an improvement; living in the present; and using the family and personal network.

The participants felt that both they and the patient used the same strategies. However, there was a great variation in how many, how often, and in which situations the strategies were used. The participants also said that they used different strategies depending on if they were meeting the patient or some other person. The same strategies were used regardless of whether the participants lived with the patient or not.

Thinking that the death is far off in the future

Usually the loved ones fully understood that cancer is a serious and incurable disease that was leading to the patient's death. However, as the date of death was unknown, they bury this information deep in their heart. This made it possible for them to live as if death was far off in the future. This phenomenon means you have the insight to the situation, but you do not think about it every day. This makes it possible, despite the insight, to deal with the patient as a living person instead of a dying one. As one participant said, “You can never know how long it will take, no one can know that.” Despite using this strategy, loved ones still thought about the anticipated death and even talked about the death with the patient in some way. They talked either about the death as a phenomena or the patient's own death. Another way of allowing themselves to think about the approaching death was to focus their mind on what life was going to be like for them when the patient was dead even if it was far away in the future.

Hoping for an improvement

As the disease worsened and new symptoms appeared, loved ones hoped that this was temporary and focused on alleviating the symptoms. The symptoms seemed more interesting and were deemed more important for the loved ones because they could be treated. One participant said, “I still think that he had had too much morphine, that's why he became so tired and I thought ‘he will soon be better.’ ”

When the patient felt better there was a strong hope that the illness phase was over. During the phases when the patient had to undergo treatment, hope for the ability to keep the disease from further progression was strengthened. This also meant that the hope for prolonging the patient's life returned. Searching for and trying alternative treatments outside ordinary medical regimen gave hope of finding something that could cure the disease or prolong life. Some loved ones hoped for a miracle throughout the illness period. “You have hope all the time … but sometimes I understood.” Another phenomenon that helped using this strategy was earlier life experiences. If the patient had had a similar period with pain and other symptoms earlier and had recovered from that, the loved one thought the patient could recover once again. “The last time she was at the hospital she came home after 2 weeks although they had said that she would not come home again.”

Living in the present

Almost every loved one in the study used living in the present day as a coping strategy. “It is now and not later … it is just now … and some damned later does not exist.” That meant trying to continue everyday life with housekeeping, cooking, and other daily routines. For those who had children it was very important to continue their daily routine for as long as possible. Continuing daily life gave the loved one and the patient the feeling that the disease was not affecting them so much. “We tried to live as normal as usual, we tried to keep daily life as we always had.” Accompanying the patient to clinic visits at the hospital, for treatment or to see the doctor was a way of gaining a sense of control over what was happening and provided the loved one with information and knowledge. For some, it was important to take “time out” from the disease, which could mean going to work, walking, or just being alone for a while. This was described as a way of finding inner peace and was necessary in order for loved ones to maintain strength to manage the situation.

Utilizing the family and personal network

How the family managed problematic situations earlier in life influenced how they managed and acted when a family member became seriously ill. Half the loved ones reported that their already established family culture was used as a strategy to help them manage the difficulties they experienced in the current situation. All of them knew how to handle a serious situation and by using methods previously applied in challenging situations, they had their specific family culture available that gave them a sense of security in knowing how to deal with the problem. The loved ones also reported that they used a family communication pattern that indicated what was and was not allowed to be brought up in regards to feelings, opinions, and fears. “In our family we have never been open about death, we have rather joked about it.” Coping strategies can vary between families and also vary between members within the same family. Often, family members know how they, as a family, deal with their problems as well as what communication pattern they follow. These family specific problem-solving patterns are something someone outside of the family cannot always see and fully understand.

Discussion

Nearly all of the loved ones in our study used several of these coping strategies in order to deal with the new situation of having a spouse diagnosed with an incurable illness, which is in line with other findings.¹⁴ In this study, however, some specific strategies could be identified. Maintaining a sense of hope, which differs from denial, has been identified as a central need, both for patients and their loved ones. It is an important component of the coping strategies as also described by Kylmä et al.¹⁵ and Rustoen.¹⁶ It is this sense of hope that provides a mental refuge for the loved ones from the painful insight of the fact that the moment of death is approaching. This phenomenon allows for the loved ones to “rest” from the grieving process. However, it is important to understand that this sense of hope coexists with the full insight and understanding of what is coming. The strategy of maintaining a sense of hope has been described in the review written by Clayton et al.¹⁷ In accordance with other findings, our study showed that both patients and their loved ones used different coping strategies that only they, as a unit, had developed and understood well. These coping strategies were unique and allowed them to predict each other's state of mind, and hence, helped them support each other by being attentive to which particular coping strategy that was being used at that moment.^18,19

The strategy of thinking that the death is far off in the future is a form of double strategy, in which both the patient as well as the loved one are aware of what is going to happen but choose to focus on the possibility that it is not relevant at the moment. Even if they think that death is far away, it does not mean that they do not think about it. There are moments when they think about the approaching death but do not talk or express these thoughts with others. Therefore, it is not always easy for persons around the loved ones, such as health care staff, to know if the loved ones fully understand the situation or if they only understand the part of the information they are able to take in at the moment. This strategy has been described in other studies where a patient chooses other subjects than talk about the disease.²⁰ In some studies, loved ones have also described this as a protection for the patient and not as a strategy helping to cope with the situation.^21,22

The strategy of hoping for an improvement separates the symptoms from the cancer disease and allows the symptoms to be seen as the problem, instead of accepting that the cancer causes the symptoms. In line with Lobchuk and Degner's²³ findings, a symptom can be seen as treatable and will disappear. However, this is not possible if the symptoms are part of the cancer. In accordance with our findings, Kershaw et al.²⁴ describes that when the patient has few symptoms, loved ones need fewer coping strategies.

Findings in this study in regards to the family and personal network providing their own coping strategy depends on the family's cohesion. The well-known way of dealing with problems gives security in the daily life. Developing this kind of family pattern is described by Jaehee²⁵ and seems to occur regardless of different cultures and whether the family lives in Asia or Western Europe.^26,27

The strategy of living in the present provides for the possibility of putting the disease aside for some time. This way, the loved one may pretend that the disease does not affect the possibility of having a normal way of life. Other studies have also found that living in the present and maintaining everyday routines as much as possible, is a help in meeting every new day despite the illness.^28,29 Although using the strategy of living in the present day, loved ones have to face the reality when they have to help the patient in matters caused by the disease.

Limitations

The purpose of this qualitative study was to describe the strategies that loved ones use when a patient has an incurable disease. The findings may not be able to be generalized and may not apply to all loved ones. However, the loved ones in our study show many similarities to the loved ones experience in other studies. This may make our results transferable to loved ones in a similar context.

Conclusion

Findings in this study show that the manner in which coping strategies are used is individual and that it also depends on loved ones' ability to cope with the encounter of a dying person with whom they are very close. It may be difficult for the loved ones to manage such situations and they may need support and help from someone outside the family. When external support is needed, it is important for those who give the support, for example health care staff, to understand that this need is directly related to coping strategies and that it is not a result of denial. Further research is needed to increase our knowledge about the different kind of support loved ones need throughout the various phases of a cancer patient's illness.

Footnotes

Acknowledgments

The authors are most grateful to the respondents in this study who kindly have shared their feelings and experiences with the author. This study was supported by grants from The Research and Development Council of Gothenburg and The South of Bohuslän, Sweden, Brita Bergwalls Foundation, and Hjalmar Svenssons Foundation.

Author Disclosure Statement

No competing financial interests exist.

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