Introduction
Palliative care at the end of life emphasizes quality of life until death, rather than actively pursuing curative treatment. Truth telling at different stages and open dialogue with both the patient and family are key components in palliative care. Children of Holocaust survivors, born after the end of the Second World War, are often referred to as “the second-generation” survivors (SGS). Different studies have investigated the characteristics of this unique population.
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Bar-On et al.13
describe the fundamental pattern of communication between Holocaust survivors and their children about traumatic memories as a “conspiracy of silence,” that is, the inability of survivors to talk about their traumatic experiences with their own children and the reluctance of the children to stimulate their parents to communicate openly.Personal and professional conflicts may arise as a result of the contradiction between a conspiracy of silence and truth telling, reflecting the diverse values and goals held by patient, family, and clinical staff. We describe an intervention used with a terminal second-generation patient and review the relevant literature, discuss main issues and dilemmas, and make recommendations for future interventions.
Case Description
K., a 52-year-old patient with metastatic prostate cancer, was referred to our home hospice care unit. From the first interaction with the hospice team, K. expressed his wish to relieve his suffering and end his life at home. However, K.'s wife, A., refused to consider any palliative care option and was very angry whenever circumstances enabled a discussion about treatment goals. She would state, “You can't understand us … in our family things are different,” and at one point later in the course of her husband's illness she said, “No one can send us to the gas chambers.” This statement gave the clinical team the opportunity to inquire about the family's background, which subsequently revealed that both the patient and his wife were children of Holocaust survivors and that the Holocaust was never discussed in their home. The couple described their coping mechanisms for dealing with life events and normative life crises by stating that “We fight to the last drop of blood … we do not complain … no one raises hands in this family.”
As K. began to feel worse, with intractable pain and spiritual suffering, he asked the hospice physician for relief and the issue of palliative sedation was brought up. A. denied the deterioration in her husband's health and continued treating her husband as if he was going to recover. The team avoided confronting her and tried to convince K. to speak with his wife about his treatment goals and preferences. When this conflict between the couple escalated, the couple's adult children were asked to intervene and discuss the possible benefits of palliative sedation with their mother.
After this discussion with her children, A. eventually agreed, saying “You can do whatever you want.” She expressed her despair, saying that “Now, everything is over.” During her husband's last days, A. could not accept the death process as part of life. While K. was struggling to remain comfortable and die a peaceful death, A. started mourning before he died, leaving him without her emotional support and intimacy.
Discussion
To date, no empirical research has investigated the way SGS respond to their own death or the deaths of their significant others. Theoretical models argue that after the Second World War, the original personal identity of survivors was replaced by a series of collective ones—the “victim,” the “fighter,” the “aggressor,” and the “dead”—and these symbolic labels were then internalized by their children as part of their own identity. In the eyes of many survivors, their children were symbolic “memorial candles,” a bridge between the past, present, and future. Their children's achievements and success give meaning to the fact that the parents were able to survive when others were killed. Thus, the identity of SGS includes the component of “the successful,” in addition to the labels of their parents.
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For SGS, life-threatening illness and death may represent a personal failure to fulfill their symbolic role of continuity of their family's lineage and compensating for the loss of lives in the previous generation. The coping mechanisms used by patients when faced with illness and death often mirror the strategies that family members have developed to confront their past experiences and traumas. As a result of the second generation's involvement in the conspiracy of silence, out of respect for their parents' need to remain silent, a “double wall” is created. When the traumatic topic does indeed come up, one side meets the silent wall of the other and thus the story often has not been told or has been told with minimal flattened details.13
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Palliative care focuses on improving the quality of life for patients suffering from life-threatening illnesses and their families. Treatment goals include supporting life through symptom relief, preventing suffering, and maintaining the highest quality of life possible for patients and families.
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These goals often can be in direct opposition to the acquired identity of SGS as symbols of Jewish resilience and victory in the face of massive death. From the first engagement between patient and staff members, truth telling is a key component that enables staff members to empower patients, increase their autonomy, and maintain their sense of control. Effective communication skills are, therefore, a prerequisite and include efficient information sharing, active listening, collective determination of goals and preferences, and assistance with medical decision making.18
End-of-life issues are complex, and in the ideal scenario, most issues should be discussed with the patients while they are still conscious.19
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This includes choosing the appropriate treatment, place of death, assessment of the ability of families to handle the dying process, decisions regarding the funeral arrangements, and more. There are many time-sensitive and emotionally complicated decisions to be made, and these choices should be made in harmony with the changes that take place as the illness progresses and by including patient and family insights about the situation.National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care, 2nd ed. 2009. Available from http://www.nationalconsensusproject.org. Accessed July 20, 2012.
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The conspiracy of silence, typically played out within the family between the patient and the primary caregiver, may spread to influence the dialogue with the professional staff and may hold implications for palliative decision making. Family communication patterns and attitudes toward death and dying based on denial and silence prevent the patient from addressing end-of-life issues and postpone discussions. The conspiracy of silence is not unique to Holocaust survivors and SGS. It has been found in other populations as a way to avoid confronting an unspeakable past. In the context of historical trauma, it was described among families of veterans,
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and among the Korean-American population,24
as a mechanism to mediate legacies. In the context of intimate relations, the use of silence as a communication pattern creates a sense of disconnection, when one of the spouses is a survivor of different types of trauma.25
Lack of awareness and sensitivity to these issues can lead clinicians to participate in the silence and mistakenly reinforce denial by giving censored, flat, and partial information in a way that minimizes its significance and prevents open discussion.
The management of physical symptoms can be influenced by this process as well. The physical suffering can become part of the “untold story.” The patient, whose identity contains “the fighter” and “the victim” concurrently, can tend to minimize his suffering and avoid asking for help until experiencing extreme pain. The patient and family also may reduce actively seeking out necessary medical care and, by avoiding contact with the on-call team, may frustrate the professional staff and erode the trust between the patient and the palliative care team, thereby compromising the depth of the therapeutic relationship. When the professional caregiver is an SGS himself, he may encourage the patient to live with the pain and uncomfortable symptoms, as an expression of resilience, as a result of the same unspoken communication patterns.
As the end of life approaches, treatment protocols for relieving suffering, such as palliative sedation and hydration, may be misinterpreted as directly contributing to the death of their loved one instead of as a means to provide consolation and comfort. In addition, the lack of mutually agreed on treatment goals among the patient, family caregiver, and palliative care team can contribute to tension and disagreements. When the patient asks to relieve his suffering but the family caregiver is focused on family continuity and defeating death, the clinical team acting as a mediator is trapped in between. This might be the case not only with Holocaust survivor families but also with the children of parents who die of chronic disease, family members of torture victims, or in other situations like the long suffering created by prolonged wars.
Based on the literature and our experience, asking about family history and connection to the Holocaust or other prolonged traumatic events is recommended from the initial phase, as part of the evaluation of personal emotional status and dominant family communication patterns. When the issue is relevant, we suggest a two-phase discussion:
1) Open and direct discussion about communication patterns in the family done in an empathic sensitive way that respects family history and culture. The focus of the discussion should be to clarify the communication process between the patient, family, and professional caregiver rather than treatment goals. Examples of such discussion may include:
Some of the families we take care of, especially those who have a history of traumatic events such as the Holocaust, struggle with a unique set of difficulties that are associated to communication patterns. Can we discuss those issues with you?
Sometimes family communication style has a direct influence on the quality of care and treatment outcomes. From our experience we believe that we should discuss this issue before we proceed …
2) After the patient and family agree to discuss these issues, staff should present the possible conflict between the family and the palliative care communication styles.
Some Holocaust survivor (or trauma survivor) families do not speak openly about illnesses and difficulties. In order to match our treatment to your personal preferences, we would like to have an open discussion about your health, including the illness stage and available options … How do you want us to proceed?
We are aware of your lack of experience in having open discussions about such painful situations. However, our experience with other families has shown us that in order to give our patients the best treatment we can, we must clarify their preferences. We believe that this is the best way to ask and share the information we have with our patients. Would you like us to operate the same way with you?
The team should be aware that different personality components are typically characteristic among SGS, and the team can insert different content into the dialogue. When the patient expresses contradictory opinions, thoughts, and requests, reflecting on the context of these contradictions and working with the patient to clarify their meaning can be helpful for appropriate decision making.
When negotiating treatment goals, we must recognize the potential gap between the patient's goals and caregiver's goals. Distinguishing between the past historical trauma and the present clinical situation may help to mediate between them and allow them to set joint targets. It is recommended to use the same expressions used by the patient and handle them in a sensitive, emphatic, direct way:
When you say “We fight to the last drop of blood,” what do you mean? In what ways do you express this in your daily life? How does it connect to your treatment goals? We would like to explore together with you if this attitude is suitable to the current situation.
Unfortunately, there is no medical solution that can offer a cure for your partner's illness, but we do have solutions to alleviate his suffering. We wonder if we can fight “to the last drop of blood” against suffering instead of fighting against his illness?
Children of Holocaust survivors are often described as symbols of victory and resilience. In any context, professional caregivers should demonstrate their readiness to listen and work with patients and their families in the decision-making process. Because silence was found to be an intergenerational transmitter of the unspoken past in different types of traumas, these recommendations may be relevant to others, too. For survivor patients and their families, silence often serves a psychological need to diminish the fear of death and repress the horrifying memories of the traumatic past. For professionals, open discussion is an important skill to effectively discuss preferred treatment options, death, and planning for the future. This unique situation calls for the development of a strategy for comprehensive patient evaluation and targeted interventions for promoting quality of life for this specific patient group. A similar approach also might be appropriate for other groups who have a history of trauma, such as war veterans or post-traumatic stress disorder patients.
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Article info
Publication history
Published online: July 27, 2012
Accepted:
April 2,
2012
Identification
Copyright
© 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc.
