INTRODUCTION
Palliative care in Japan has been practiced for approximately 25 years since the first hospice unit was established (Kashiwagi, Reference Kashiwagi1999a). Palliative care services have been established mainly in in-patient settings for patients diagnosed with cancer as well as those with AIDS. The development of community-based palliative care remains a challenging area (Kashiwagi, Reference Kashiwagi, Doyle, Hanks and MacDonald1999b). As a result, the majority of deaths occur in hospital-based palliative care units. When a patient dies, health care professionals experience the loss of the relationship that they had developed with patients and family members, calling up memories of their own unresolved grief and reminders of their own or loved one's mortality (Adams et al., Reference Adams, Hershatter and Moritz1991; Vachon, Reference Vachon1995). However, health care professionals' grief is not well recognized, and the lack of opportunity to reflect on their own grief has led to burnout of many health care professionals working in palliative care settings in Japan (Welfare Science Research Team, 2001). As a consequence, staff support has been one of the primary issues in Japanese palliative care settings in the last few years, as recognized by the Welfare Science Research report of 2001 published by the Japanese Hospice Association.
K. Shimoinaba experienced both working in a general ward and a palliative care unit in Japan and palliative care units in Australia. The recognition of staff grief and stress in each country differs. Issues of staff grief and stress of nurses working in palliative care settings have been recognized in Western countries, and from this recognition, staff support systems were developed in Western countries, including Australia, from the early stages of the development of palliative care (Vachon, Reference Vachon1995).
Based on an extensive literature review, characteristics of staff grief dealing with palliative care patients and grief issues in Japanese culture are described as preparation for establishing a study to look at the influence of Japanese nurses' grief on the quality of care provided. Consideration of Japanese culture as it relates to death and dying and to nursing culture is a significant part of this work.
SEARCH METHOD
It is clear from the literature review that nurses' responses to patients' death and their grief experiences have attracted attention only within the last 20 years around the world (Adams et al., Reference Adams, Hershatter and Moritz1991; Papadatou, Reference Papadatou2000). The characteristics of staff grief and the nature of losses experienced by health care professionals have been outlined by researchers including Papadatou et al. (Reference Papadatou, Papazoglou and Bellali2002) and Sherman (Reference Sherman2004), but this has been based primarily on neonatal and pediatric areas, with very little research undertaken in the area of palliative care. A review of the literature conducted in the Japanese context however, indicated no research findings regarding Japanese health care professionals' grief issues through their work including palliative care.
Published articles relating to this study were searched using electronic catalogues such as CINAHL and PsycINFO, books, and research publications. Key words used for the search were “grief,” “palliative care,” “nurse,” “staff support,” and “Japan.” Both English and Japanese were used for the literature search in order to collect information regarding nurses' grief and support systems in Japan and elsewhere. The literature search covered the period 1990–2006 inclusive. However, some primary works in the area of staff grief and support from the 1980s were also included. Approximately 300 articles were found under the above keywords, from which articles focusing on four major themes were selected for this review and used for preparing future research in this area. In this literature review, findings of staff grief, compassion fatigue, grief issues in Japan, and staff support are reported.
Findings of Staff Grief
Nurses in palliative care settings are constantly confronted with issues relating to loss. It may be patients' loss of physical abilities, loss of decision-making ability, loss of control, or loss of life. This constant exposure to loss and death constitutes an enormous burden for nurses (Mallett et al., Reference Mallett, Price and Jurs1991). Especially in palliative care settings, nurses, in their daily professional life, face patients' suffering at the stage of terminal illness and death and witness families' anticipatory grief. As a result of this, many nurses also may experience loss and grief. The pain felt by the nurses, often dormant or suppressed, becomes manifest when they witness someone's experience of loss or patients' death (Kaplan, Reference Kaplan2000). Kaplan reported that grief is not limited with respect to time and is never completely resolved and will be experienced from time to time depending on life events. Papadatou et al. (Reference Papadatou, Papazoglou and Bellali2002) studied nurses' and physicians' grief in a Greek setting and noted that health care professionals' reaction of grief varied between open expression and suppression. They explained that the fluctuation between two psychological processes, open expression and suppression, is normal; however, suppression of grief may lead to burnout (Papadatou et al., Reference Papadatou, Papazoglou and Bellali2002), a view also held by Vachon (Reference Vachon1995). In reality, however, nurses may not have enough time to reflect on their experience or grief in a modern fast-paced health care system, because they need to face other patients' admission or death without having dealt fully with the previous experience. Marino (Reference Marino1998) also noted that if health care professionals do not have the time or opportunity to grieve after a patient's death, there are consequences on both personal and professional levels. However, health care professionals' grief is seldom acknowledged, and this barrier to health care professionals dealing with the normal responses to bereavement is called “disenfranchised grief.” Disenfranchised grief is defined as grief experienced by those who have encountered loss that cannot be openly acknowledged, publicly mourned, or socially supported because the relationship with the deceased is not or cannot be recognized (Doka, Reference Doka2002). Disenfranchised grief is one of the noted characteristics of staff grief found among nurses working in palliative care settings (Wakefield, Reference Wakefield2000; Doka, Reference Doka2002; Renzenbrink, Reference Renzenbrink2005). Although the relationships formed with dying patients are often meaningful and intense in nature, modern society does not generally acknowledge the right of these health care professionals to grieve or to process the impact the death has had on them (Wakefield, Reference Wakefield2000). As Kaplan (Reference Kaplan2000) stated, the loss of patients is not recognized as an appropriate loss causing grief, and many health care professionals feel that it is unprofessional for them to reveal their true emotions. The existence of disenfranchised grief experienced by nurses working in palliative care settings results from the fact that their grief is hidden and grief reactions are not expressed.
Another characteristic experienced by nurses working in palliative care settings is “anticipatory grief.” Anticipatory grief is defined by Rando (Reference Rando2000) as the phenomenon including the process of mourning, coping, interaction, planning, and psychological reorganization as a response to the awareness of the impending loss of a loved one and the recognition of associated losses in the past, present, and future. Papadatou (Reference Papadatou2000) found that health care professionals caring for terminally ill patients would anticipate the future loss of the relationship with a patient and the patient's family. Health care professionals may face death situations as often as two or three times a day with different dying persons and their families. Health care professionals are uniquely vulnerable to suffering from an accumulation of grief. In addition, Sherman (Reference Sherman2004) claimed that when losses accumulate, nurses may experience anger, guilt, irritability, frustration, feelings of helplessness and inadequacy, sleeplessness, and depression. As a result of this, the quality of patient care may be affected and may deteriorate. Therefore, as many studies have indicated (Wakefield, Reference Wakefield2000; Papadatou et al., Reference Papadatou, Papazoglou and Bellali2002; Renzenbrink, Reference Renzenbrink2005), it is clear that health care professionals require appropriate support systems for their loss and grief experience.
Compassion Fatigue
As discussed, health care professionals are uniquely vulnerable to suffering from an accumulation of grief. As caring professionals, they listen to patient's stories of fear, pain, and suffering and are likely to feel similar fear, pain and suffering because of their caring role (Figley, Reference Figley1995). Figley described this experience as compassion stress/fatigue and emphasized that people who have great capacity for feeling and expressing empathy seem to be more at risk of compassion fatigue. Compassion fatigue is defined by Figley as the behavioral and emotional consequences from a traumatizing event experienced by a significant other and helping a traumatized or suffering person. Figley also claimed that people can be traumatized simply by learning about the traumatic event. This would apply to health care professionals because they can be traumatized by witnessing/caring about the patients' and families' suffering and death. It is important to know how health care professionals become traumatized as a result of their exposure to patients, because it may be possible to prevent traumatic stress among health care professionals and also increase the quality of care for patients/families by supporting their caregivers (Figley, Reference Figley1995).
Figley (Reference Figley1995) also has drawn attention to the vulnerability of health professionals and to nurses in particular as one of most vulnerable professions. They are exposed to experiencing compassion fatigue because they are likely to be empathic, exposed to traumatizing situations, or work with traumatized people on a regular basis. Valente and Saunders (Reference Valente and Saunders2002) suggested that this overload may occur after significant or multiple deaths, when nurses lack time to reflect on and manage their own grief. Nurses may doubt their professional identity, self-esteem, and their ability to engage in caring relationships if their feelings are unresolved. As a consequence of compassion fatigue, health care professionals can be emotionally devastated, resulting in impaired performance that makes the goal of quality of patient care almost impossible to accomplish (Keidel, Reference Keidel2002). Kaplan (Reference Kaplan2000) stated that health care professionals experiencing grief may withdraw and attempt to distance themselves from the emotional demands of their work. Valente and Saunders suggested that health care professionals' unresolved grief indicates future physical and mental health problems. Therefore, staff grief and stress may have significant consequences for both health care professionals and for patients in their care (Sherman, Reference Sherman2004). Compassion fatigue appears to be an occupational hazard of caring professions (Figley, Reference Figley1995). On the other hand, when health care professionals are given adequate support with permission to grieve, they are able to begin their own healing process and become more effective and compassionate caregivers (Kaplan, Reference Kaplan2000).
Stamm (Reference Stamm2005) introduced the concept of compassion satisfaction and emphasized that compassion satisfaction plays a vital role for the helping professions. She argued that not all helping professions are affected by traumatic stress, and some of them must have a protective mechanism or strategies to maintain their well-being. It is clear that the motivation of helping professions to care for people is shaped, in part, by satisfaction derived from the work of helping others (Collins, Reference Collins2003).
Compassion fatigue and burnout similarly resulted from exposure to emotionally engaging patients via interpersonally demanding jobs and represented debilitation that can obstruct health care professionals' services (Jenkins & Baird, Reference Jenkins and Baird2002). Some researchers, however, pointed out the difference between compassion fatigue and burnout (Figley, Reference Figley1995; Jenkins & Baird, Reference Jenkins and Baird2002). Figley noted that burnout emerges gradually as a result of emotional exhaustion, in contrast to compassion fatigue/stress, which can emerge suddenly with little warning. Jenkins and Baird (2002) explained that burnout is conceptualized as one of defensive responses to prolonged occupational exposure that produces psychological strain and provide inadequate support. They also mentioned that burnout is related to chronic uniformity in the workplace rather than exposure to specific patients' problems, and compassion fatigue has not been linked to workplace conditions. In addition, Remen (Reference Remen1996) mentioned that health care professionals burn out not because they do not care but because they do not grieve and also because they have allowed their hearts to become so filled with loss.
The Nature of Losses Experienced by Health Care Professionals
Papadatou (Reference Papadatou2000) suggested six categories for the nature of losses (Table 1) experienced by health care professionals based on her research in the pediatric area. She noted that each loss may be experienced as exhibiting one of these categories or a mix of two or more of them. Thus, each health care professional may respond uniquely to any given loss.
The Nature of Losses Experienced by Health Professionals
The categories listed in Table 1, although suggested by Papadatou (Reference Papadatou2000) within a pediatric setting, are also applicable within adult palliative care settings and form significant elements for subsequent research. The extent to which these categories relate to the situation in Japan will be explored below.
PALLIATIVE CARE AND GRIEF ISSUES IN JAPAN
Japan, a northern hemisphere archipelago consisting of four main islands and several thousands of smaller islands, had a population approaching 128 million in 2005. That population is rapidly aging; the elderly population (65 years and over) was 26.82 million and constituted 21% of the total population (Ministry of Internal Affairs and Communications, 2006).
History and Development of Palliative Care in Japan
The developmental history of palliative care in Japan is unique in the sense that it originated as a facility-based phenomenon. It was also based on the tenets of Christianity, which is not a traditional Japanese belief system. Dr. Tetsuo Kashiwagi, a psychiatrist, worked in the United States, where he observed palliative care services, as well as visiting St. Christopher's Hospice in the United Kingdom. In 1973, he established a multidisciplinary congress at the Yodogawa Christian Hospital in Japan in order to discuss a care plan for terminally ill patients. Doctors, nurses, allied health workers, and chaplains were included as members of the congress, and they discussed and planned the care for terminally ill cancer patients. In 1977, the Japanese Association for Clinical Research on Death and Dying was established, and health care professionals started to realize the importance of palliative care. The first in-patient palliative care unit was started in 1981 (Kashiwagi, Reference Kashiwagi1999a). With the incentive of government funding, the number of palliative care units increased in Japan; however, little development has occurred outside palliative care units. The provision of home-based palliative care services and palliative care consultancy teams in general hospitals has not been well developed. There are several reasons why this is so: the patient's and family's fear of uncontrollable symptoms at home, lack of caregivers at home, and lack of specialists to support home-based palliative care (Kashiwagi, Reference Kashiwagi1999a). As a consequence, the average stay in Japanese palliative care units was 46.29 days in 2004 (from an unpublished report from Hospice Palliative Care, Japan).
In 2001, the Public Welfare Science Research Team was established in Japan in order to extend the system of palliative care provision. One of the issues mentioned in the survey summary by the Public Welfare Science Research Team related to health care professionals, especially nurses' stress and support needs for them. However, there was no reference to the notion of health care professionals' grief.
The Japanese Health Care System
Among the unique aspects of the Japanese palliative care system are longer institutional stays than Western countries and decision-making processes including truth-telling and family involvement. These aspects affect health care professionals working at Japanese palliative care units in a variety of ways.
As already described, palliative care in Japan is mainly provided in the institutions, not in the community. During patients' long hospitalization, health care professionals are more likely to witness patients' and families' suffering, emotional struggles, fear, deterioration, death, and grief. In addition, as many palliative care units in Japan have adopted a primary nursing system, individual nurses are nominated as the main nurse for a particular patient. The primary nurse has responsibility for her patient from admission to discharge. Most primary nurses and patients will develop a close relationship, and sometimes nurses become overinvolved (Kashiwagi, Reference Kashiwagi1992; Gray & Smedley, Reference Gray and Smedley1998). Nurses may feel pain simply because of witnessing someone's difficult experience. As a result, such painful emotions may make them aware of their own losses and may activate the fear of potential future losses (Rando, Reference Rando1984). Furthermore, long hospital stays may compound relationship conflicts and create additional burden. This is described by Papadatou (Reference Papadatou2000) as “loss of one's unmet goals and expectations and one's professional self-image and role” (p. 62). The patient's death results not only in the loss of the relationship with the patient but also the loss of the nurses' professional self-esteem.
A further issue in Japanese health care settings is the decision-making process including truth-telling and family involvement. Traditionally in Japan, all decisions were made by family members and health care professionals for the patient. The situation has changed dramatically in the last 10 years, and now patients seem to have a better understanding of the truth and to have some input as to their treatment. A survey report from the Ministry of Health, Labour and Welfare (2004) says that 77% of the general public in Japan would like to know their own diagnosis even if it is an incurrable disease. However, there is still a tendency for the doctor to tell the diagnosis to the family first, then for family members to decide whether they should tell the truth to the patient. Some patients are told the diagnosis but do not have the correct information regarding their treatment options or prognosis. In this situation, health care professionals, especially nurses, have difficulties in establishing trust relationships and building effective communication. As a consequence, nurses may feel guilt or failure after the patient's death. Again, this may cause nurses to experience loss of professional self-image and/or experience the sense of failure stated by Papadatou (Reference Papadatou2000).
Grief Issues in Japan
Although limited, there are some research findings supporting needs of staff grief care in Japan (Matsushima et al., Reference Matsushima, Akabayashi and Nishitateno2002; Sakaguchi et al., Reference Sakaguchi, Tsuneto and Takayama2004). In practice, grief issues and bereavement support for bereaved families have started to be recognized in Japanese health care settings and society. But, the grief issues of health care professionals and support systems for them have not been well recognized (Sakaguchi et al., Reference Sakaguchi, Tsuneto and Takayama2004).
Cultural Influences on Grief Care
Historically, bereaved family members were supported by their immediate family, extended family, and social support systems. Based on their religious belief system, Japanese people have rituals to follow after the death of a loved one. Family and extended family gather together and remember and talk about the family member who has died. However, like many other countries, family structure in Japan has changed, with a move away from the extended family to a nuclear family. This has been accompanied by a dramatic increase in the aging population. As a result of these changes, a lack of family and social support are significant in modern Japanese society. This transition has heightened the necessity for bereavement support in health care systems in Japan (Sakaguchi et al., Reference Sakaguchi, Tsuneto and Takayama2004). According to Sakaguchi et al., there has been a steady growth in the bereavement services offered by palliative care units in Japan over the past few years, and nurses play a central role in the delivery of these services, although they are not professionally trained grief counselors. The main bereavement supports provided by nurses working in palliative care units are the sending of a memorial card and the conduct of memorial services (Matsushima et al., Reference Matsushima, Akabayashi and Nishitateno2002; Sakaguchi et al., Reference Sakaguchi, Tsuneto and Takayama2004). This creates an additional burden for nurses working in palliative care units, who now have basic responsibility for bereavement support as well as the care of terminally ill patients (Matsushima et al., Reference Matsushima, Akabayashi and Nishitateno2002). The significance of bereavement support for the grieving family is strongly emphasized, but the need for sufficient resources and the provision of education and training in the grief and bereavement area is not well recognized in Japan.
OUTCOMES: EFFECTIVE SUPPORT FOR STAFF GRIEF
As health care professionals' grief is unexpressed and unrecognized by society, recognition and acceptance of their grief and permission to express their pain are extremely important. Formal support is lacking, and health care professionals are required to cope with occupational stress or grief by talking to colleagues or by talking with a partner and/or family members at home. As a consequence of lacking available formal support, health care professionals continue to administer nursing interventions as if nothing has happened (Wakefield, Reference Wakefield2000).
One of the areas for further study is to suggest effective staff support for nurses' grief. There appears to be the need for support at three levels: organizational level support, ward level support, and self-care.
Organizational Level Support
The organization plays a significant role as an advocate for nurses and in preventing or intervening in cases of burnout, depression, and other negative outcomes (Keidel, Reference Keidel2002). The organization needs to understand the importance of staff support and establish a positive philosophy with regard to staff support. Marino (Reference Marino1998) suggested that education and training, opportunities for staff support, and access to professional counseling when necessary are areas of support that an organization can and should provide to the nurse. The resources and funding for staff support initiatives must be seen as a necessity because the welfare of staff is inextricably linked with the quality of care that is offered to patients and families (Jones, Reference Jones2001; Renzenbrink, Reference Renzenbrink2005).
In 2001, Shimoinaba conducted a study investigating the support needs of Japanese nurses who work with palliative care patients. A total 207 Japanese nurse, 117 nurses from general hospitals and 90 nurses from palliative care units, participated in the study. Nurses were asked what kind of personal support they valued when they cared for patients requiring palliative care. The most desired personal support was professional advice and a willing listener (general nurses 31.2% and palliative care nurses 32.1%). Nurses in the study realized that they needed to have palliative care specialists or professional counselors as a form of support. Nurses need to have support both for their professional work in the demanding area of palliative care and the emotional strain that that work entails. Organizations should understand nurses' support needs and provide accessible support for nurses in order to maintain their workforce.
Ward Level Support
Colleagues/peers are the primary support for health care professionals (Yassen, Reference Yassen and Figley1995) and ward level support includes debriefing sessions, peer support, supervision, and education/training. Yassen suggested peer support, as the individual has the opportunity to receive from and give support to colleagues who are involved in similar work tasks. Nurses tend to feel alone in their grieving process and have a dilemma as to where and with whom they are comfortable sharing their emotions (Kaplan, Reference Kaplan2000). Sharing their experience and establishing the networks within the team are significant tasks for health care professionals. Japanese nurses identified nursing staff including the nurse unit manager, educators (supervisors), and colleagues as supports in the study mentioned above (Shimoinaba, Reference Shimoinaba2001). They also identified the nurse unit manager as a helpful person when they had a problem.
Supervision is also a crucial support for nurses. Supervision provides the opportunity for someone to listen individually to each nurse, as they in their turn have had to do with the patients and their families (Yassen, Reference Yassen and Figley1995). Supervision can also give the opportunity for nurses to recognize their own grief issues and make sense of their personal feelings, and begin to understand those of others (Jones, Reference Jones2001).
Self-Care, Self-Awareness, and Coping
In Shimoinaba's (Reference Shimoinaba2001) study, Japanese nurses caring for palliative care patients identified “psychological strength,” “balance in mind and body,” and “responsibility for caring for their own feelings” as means of personal support. This implies that these nurses recognized the significance of self-understanding and their responsibility to care for themselves. Nurses are required to acquire self-care strategies as well as formal supports in order to deal with their grief experience. Nurses must recognize their grief reactions and symptoms and employ self-care strategies to revitalize themselves physically, emotionally, mentally, and spiritually in order to deal with their various grief issues and reactions (Sherman, Reference Sherman2004). Nurses understand that holistic care for the patient is important; in the same way, they need to practice holistic care personally (Hayhurst, Reference Hayhurst2005).
Another important skill required for health care professionals is self-awareness. Nurses need to appreciate their personal strengths and limitations, to have self-knowledge, and to understand why they have chosen to work with seriously ill patients and their families (Kaplan, Reference Kaplan2000; Sherman, Reference Sherman2004). It involves finding personal meaning in traumatic experiences and incorporates these lessons into a self-view. Self-awareness also involves finding ways to take control in the face of powerlessness, and knowing when outside help is needed (Yassen, Reference Yassen and Figley1995).
CONCLUSION
This article has outlined grief issues for nurses working in palliative care units, and has discussed more particularly the situation in Japan, and the cultural influences at play. It is clear from the literature that staff grief has not been well recognized in Japan. However, some researchers from Western countries have discussed the characteristics of staff grief, such as disenfranchised grief and anticipatory grief, and their relation to burnout.
This article has also discussed the development of palliative care in Japan and the Japanese health care system. Unique aspects of the Japanese palliative care such as long institutionalization, the role of primary nurses in most palliative care units, the disclosure of diagnoses to the patient's family, and the family's substantial role as to whether the patient is fully informed or not and their further role in decision making with regard to treatment options are identified. These issues, together with the primary nursing system, tend to deepen nurses' emotional involvement in patient care, and these findings suggest that nurses working in Japanese palliative care units are constantly witnessing the sufferings of patients and families. Furthermore, nurses may question their professional goals if they come to doubt their ability as a primary nurse or feel a sense of failure because of a lack of trust in their communication with a patient who has not been fully informed of his/her diagnosis.
In addition, the lack of social support brought about by the structural change of the family from an extended family to a nuclear family has created a new role for nurses working in the area of palliative care. Nurses working in palliative care units are dealing with family bereavement while they have a primary role to care for the palliative care patients in the ward. Grief care and bereavement support for grieving families have been gradually recognized among Japanese health care professionals. However, professional training in the area of grief/bereavement support is still lacking.
These areas require further investigation to explore Japanese nurses' grief experience when they work in palliative care settings and its influence on the quality of care they offer. The exploration of nurses' personal experiences working with palliative care patients will require consideration of their emotional responses to death and their grief experience through the work. It is hoped that a future study will lead to a greater understanding of nurses' grief experience and will help to establish appropriate support systems for nurses working in palliative care settings in Japan in the future.
ACKNOWLEDGMENT
This study was supported by a Grant for Research on Hospice Palliative Care, Japan Hospice Palliative Care Foundation, 2006.4-2007.
