<Bereavement services by hospital staff in an Israel hospital>I wish that this model was used in a broad way..both staff(nurses/physicians) and patient families benefit..in my experience
THE ART OF ONCOLOGY: When the Tumor Is Not the Target
The Bereavement Visit in Pediatric Oncology
Jerry Stein, Anat Peles-Borz, Ilana Buchval, Anat Klein, Isaac Yaniv
From the Bone Marrow Transplantation Unit, Department of Pediatric Hemato-oncology, Schneider Children's Medical Center of Israel, Sackler Faculty of Medicine, University of Tel Aviv, Petach Tikva, Israel
Address reprint requests to Jerry Stein, MD, Bone Marrow Transplantation Unit, Pediatric Hematology Oncology, Schneider Children's Medical Center of Israel, 14 Kaplan Street, Petach Tikva 49202, Israel; e-mail: jstein@clalit.org.il
Among the many traumas that assault the family of the child who dies of cancer is the sudden detachment from the staff of the oncology unit after a long period of close collaboration. A child’s last days are often characterized by intense palliative efforts and emotionally charged interactions between the staff and the patient’s family, which stands in stark contrast to the go-it-alone vacuum of the empty and lonely time in which the family now must find their way. Detachment from the oncology unit is added to the long list of decathexic tasks that the family must perform as part of their work of grieving. Conversely, oncology staff members also deal with disengagement from the bereaved family and the dead child; sublimation of this process into the hectic daily routine of the ward can lead to unresolved emotional needs surrounding the issues of death and mourning and, possibly, to the burn out so often encountered in those who work with children with cancer. Where communication and solidarity between the family and the staff once reigned, a void of alienation now develops.
A bereavement visit by the oncology staff is a way of filling this void. It may also facilitate the early phases of mourning for the family and give the staff profound insight into the tragic drama in which they had recently participated. The family can retell the story of their child to the staff. "When a person dies, families have a story to tell about the events surrounding the death, and such stories are laden with meaning."1 Participation of staff members in this story-telling process can be mutually therapeutic for all involved.
Bereavement visits can often be uncomfortable and awkward, but unique religious and demographic conditions in Israel make these visits natural and, in our opinion, effective. In contrast to practices in many other Western countries, most pediatric end-of-life care in Israel is rendered in hospital, despite the ready availability of home hospice care. As such, the moment of death is attended by hospital staff, including physicians, nurses, and social workers who knew the child well and are aware of the family’s special needs. The interactive work of grieving for the dead child thus often begins under the supervision of the oncology staff and begs a follow-up encounter with the family. Additionally, Israel is a geographically small country (more than 90% of the population lives within a 2-hour drive of the center of the country) where most people are religiously oriented, if not religiously observant. The two major religions practiced in Israel, Judaism and Islam, ensconce ritual interaction with bereaved families during 7- (Shiva) and 3-day (A’za) periods after burial of a loved one. During both the Jewish Shiva and the Islamic A’za periods, friends and distant relatives interact and pray with a core of mourners composed of the immediate family. A’za prayers are performed in mosques, whereas Jewish mourners pray in the home of the deceased. Jewish mourners sit on low chairs or on mattresses to manifest their loss, and visitors do not initiate conversation or greetings. The mourners, however, are encouraged to break the ice and engage in conversation with their guests, and the conversation invariably evolves to the work of grieving. Discussions can include theologic issues (as modeled by the three men who visit Job during his epic grief as described in the Scriptural text) but tend to cluster around "informal conversations about the dead."2 It is a truly rare event to attend a quiet Shiva visit. As highlighted by Slochower, "Shiva facilitates mourning by establishing an emotionally protective setting — one reminiscent of the analytic holding environment. In Shiva, the caller, like the analyst, brackets her subjectivity in order to provide a large emotional space for the mourner."3 The mourners set the pace of the discussion, and most visitors have the good taste not to overstay their welcome.
Our staff has performed home bereavement visits for more than 20 years. Families have come to expect these visits, and they have become as much an integral part of our end-of-life care program as the administration of analgesic medications. Every family is visited, even if they live far from our facility. These home visits are part of an integrated program that we provide for bereaved families that includes a condolence letter by the department chair, small support groups for parents and siblings during the first year after the child’s death, and larger meetings of bereaved parents for formal lectures and informal discussions. The visit team includes the child’s primary physician, a nurse to whom the patient was particularly close, and the family’s social worker. A local philanthropic organization covers the transportation costs associated with these visits.
Preparation for the bereavement visit begins at the time of the child’s death. If the patient dies while in the inpatient unit, we tell the family that we will visit in the near future. If the child dies at home or in another institution, we start to plan the home visit with the family over the phone. The Shiva period is often too hectic a time in the family’s home to permit quality conversation, so we often schedule our visits in the quieter days that follow. More religiously observant Jewish families seem to prefer visits during the first 7 days after the child’s death so that the staff can be brought into the circle of mourners in both the ritual and communal sense. Moslem families are involved in intense prayer during the 3-day A’za, so we schedule our visits at the completion of this period. During A’za, men and women often mourn in different homes, making a bereavement visit with the entire family difficult. Visits are scheduled with the patient’s parents, and the staff accommodates their preferences.
Bereavement visits often start with the assignment of seating arrangements, a strange but recurring nonverbal ceremony. We try to put the parents at the center of our little circle, but often, the family seats the physician closest, making him or her the point man of the visit. Others visitors who are present in the room (particularly if the visit takes place during Shiva) cluster around our little circle, trying to catch the gist of the conversation, and usually maintain a respectful silence. Although it is normal for the staff to be somewhat self-conscious in the presence of this audience (often preferring a private audience with the parents), family and friends who are in attendance at the time of our visit will often continue discussing the topics that we raise after we leave the scene, and therefore, they are important "props" in our visit.
A strained silence often ensues after we enter and take our seats, a moment that permits the family to digest the shock of encountering the people most closely identified with the failed treatment of their child for the first time since the child’s death. We often comment on this discomfort, using the awkwardness of the moment itself as the icebreaker. By contrast, some families feel a need to embrace or hold hands with the visitors at the beginning of the visit, and crying together is a perfectly natural way to start the work of the bereavement visit. When visiting with more reserved families, we have often resorted to talking about the local neighborhood or unique furnishings of the family’s home as a way of stimulating conversation. It is crucial that visitors not plunge into what they perceive as the real issues of the visit before the family is sufficiently warmed up. Visitors must be keenly tuned in to the unique needs of the bereaved family so that the initial moments of the visit take place on the family’s terms and according to their needs, setting the correct tone for the remainder of the time spent together.
Conversation invariably touches on a number of important points. Details of the child’s last days are often narrated by the family, with input from the staff. Although we often see these tumultuous moments similarly, our perspectives can differ, and discussion of these differences can often provide consolation. Some families feel that they did not have a chance to formally say goodbye to their child, but we often point out specific behaviors by which the child indicated his leave taking (distributing his toys, giving the parents specific instructions, or depositing various hints or clues about his or her real thoughts). Many families are reluctant to talk with their child about death during the period of palliative care, and yet, we are often amazed by their stories of how the child performed farewell tasks during this time, either in verbal or nonverbal ways. Staff members are often unaware of the intimate conversations that parents share with their dying child, and parents often relate amazing stories that highlight intense insights that the child had regarding imminent death.
Families invite us to leaf through picture albums during our visit. Some albums contain photographs of the child after diagnosis and contain many pictures of the child with physical stigmata of his or her illness and its treatment; they show the child together with staff members and other patients or on outings sponsored by philanthropic organizations for children with cancer. Other albums show family events and outings, but the most startling pictures are those of the child before the illness set in. No matter how enlightened and humane our care becomes, we often construct mental pictures of our patients as cachectic, hairless, sometimes suffering subjects. Our patients were once beautiful and normal children in normal families. This normalcy and the usual parental aspirations for their growing children are reflected in the pictures spread before us. We get an additional glimpse into the coping skills of our patients and their families as we scan pages that portray family trips after diagnosis, including pictures of the obligatory Disney trip, which is an institution in our country as it probably is in many others. We are often amazed by the youthful countenances of parents that gaze at us from the photographs in the albums as they are contrasted with the strained, crevassed, and grief-laden faces that we encounter during our visit. Can it really be that such a short time has elapsed since the shutter clicked shut? For the bereaved families, these picture moments are an important vehicle to convey to us what they once were; we use the same pictures to express the hope that they will one day again be able to experience happiness.
Families often use the bereavement visit as a chance to figuratively reopen their child’s medical chart and explore specific aspects of their care. It is a good idea for the staff to review the chart in anticipation of the visit, so that they will be able to provide accurate information. We find it useful to steer the conversation away from minor details of the child’s medical care and to try to focus on more significant issues. Often the family will focus on the events immediately preceding their child’s death (did someone ignore a low potassium level, should antibiotics have been given differently, did the doctor give too high a dose of morphine), and we try to assure the family that these details would not have changed the overall outcome. If the medical staff is concerned that issues of true medical malpractice might have occurred or if the family is litigious by nature, it is wise to consult the hospital’s risk management team or legal department before the visit. Our experience on a recent visit is illustrative. We visited the parents of a child who died of recurrent disseminated ependymoma. The family focused, during the first part of our visit, on their suspicion that the patient was killed by negligent use of carboplatin when, in reality, the child died because of complications of progressive disease. It became clear that arguing the fine points of renal decompensation after carboplatin administration would be pointless. Instead, we directed the conversation towards the incredibly loving environment that the family provided their child during her last weeks and the remarkable rehabilitative efforts that they made through the years between her recurrences. The family was then able to refocus on the big picture, and although the carboplatin episode continued to loom in the background, we were able to conduct an in-depth discussion on the meaning of their loss and were able to emphasize their heroism in the face of a hopeless long-term prognosis. The visit, which began with an aura of hostility, concluded in an atmosphere of mutual trust.
Bereavement visits offer a unique opportunity for the family to give feedback regarding their experience on the oncology unit. Often, they are effusive in their thanks for the medical, ancillary, and psychosocial care that they received, and such feelings should be graciously acknowledged. Often, parents will use the visit as a chance to close accounts with staff members with whom they did not get along. We sometimes hear, "You were all great, and we can’t sufficiently express out thanks. But Dr/Nurse X was particularly mean to us on a certain day." We briefly explore the circumstances surrounding this event, try to imagine the extenuating circumstances that may have led to the specific behavior, and promise to give the appropriate feedback to the offender. We try to maintain collegiality but acknowledge that, as human beings, we all sometimes say things that we might later come to regret. We usually offer an apology in the name of the department.
On the way to the home visit, we try to remember cute or funny anecdotes about the child and the family. We use these stories during our visit to share pleasant memories. We do not hesitate to laugh with the family and find that the adage "laughter is the best medicine" is true also for the grieving family. Funny stories can also dissolve into tears, and this is indeed a healthy part of the process of mourning.
Food is almost always part of the visit, particularly with Arab families. We usually explain to families in advance of our visit that we are somewhat limited in time, but some families insist that we dine with them and often prepare elaborate feasts. This is often their way of paying us back in some measure for the attention that we gave them at the oncology unit. In some cultures, refusing to partake of offered food is considered offensive, and this should be taken into account during the visit.
As the visit draws to a close, we often ask to see the child’s room. The child’s room is often preserved (at least during the early phases of mourning) as a shrine, and asking to visit there is seen as a sign of respect for the deceased, offering a chance to share bittersweet memories with the parents. We have often been amazed by artwork created by our patients and always marvel at the personal touches that they have applied to their room, which are true expressions of the healthy side of their life while they underwent treatment at our center.
Based on our experiences with bereavement visits, we recommend some additional do’s and don’ts that should be borne in mind by the staff.
Don’t promise to maintain contact if you are not available for this task. Promising to call and then not doing so can cause bitter feelings for the family. Our department maintains support groups for bereaved families, and we often bring this up at our home visit, mentioning that they will be contacted regarding future participation.
Never tell the family that you understand how they feel; you just do not, and sounding pretentious does not serve the purpose of the visit. You can genuinely identify with and feel sad for the family’s loss, but grief is so personal as to defy true understanding. We do often express how much we miss the child and the family in our hospital work routine.
Crying with the family and embracing them are acceptable if done (for lack of a better term) tastefully. Although we want to participate in their and our sadness, the visitors should be wary of being dragged into a process of despair.
Parents frequently express a desire to return to the oncology department as part of their grieving process. We discuss this freely with them but encourage them to let some time pass until they have built up enough strength to deal with such an emotionally laden visit.
We inquire about the family’s return to routine and listen attentively to their response. Specifically, we ask about behavior among siblings and spouses, ask about sleeping and eating patterns, and look for signs of pathologic grief that may require specific referral. We ask about their plans regarding return to school and work. We comment that return to routine is difficult after the trauma that they have undergone but that such routine can often be, in itself, therapeutic.
We often express our gratitude to the family for the trust that they placed in us. At the same time, we acknowledge our sadness, frustration, and even anger that the outcome was so tragic.
One of the hardest aspects of the visit is its termination. We usually try to limit visits to 1 hour both because of constraints on our time and because longer visits might become a burden to the family. When the time approaches for us to leave, we start a process of separation that includes expressing how important this visit was to us and our hope that it helped the family in some small way. Often, the family accompanies us to the door or to the taxi, and it is normal to embrace during the farewell.
Although the formal part of the visit ends with leave taking, we often debrief each other on the way back to work. These discussions permit us to digest what has happened during our time with the family, to assess their coping (and suggest referrals to mental health and social service resources if appropriate), and to analyze what the visit has done to us as health care professionals and as human beings.
We discuss our bereavement visits at our weekly staff meetings. As such, these visits permit us, as staff of the oncology unit, an act of closure with the memories of the patient in whom we invested our skills, our work, our time, and, in most cases, our love. We truly believe that we all carry a little memory of each of our departed patients with us as we continue on with our lives both at work and at home.
Authors' Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
ACKNOWLEDGMENTS
We thank the many physicians, nurses, and social workers who have participated in the bereavement visits, Amutat Chaim for their continued support of the transportation expenses incurred by the visits, and of course, the families for letting us into their homes and their grief. This article is dedicated to the memory of Professor Rina Zaizov who initiated bereavement visits as part a program of total care for children with cancer and their families 20 years ago.
NOTES
Authors’ disclosures of potential conflicts of interest are found at the end of this article.
REFERENCES
Nadeu JW: Family construction of meaning, in Neimeyer RA (ed): Meaning Reconstruction and the Experience of Loss. Washington, DC, American Psychological Association, 2000, pp 95-111
Klass D, Walter T: Processes of grieving: How bonds are continued, in Stroebe MS, Hansson RO, Stroebe W, et al (eds): Handbook of Bereavement Research Consequences, Coping, and Care. Washington, DC, American Psychological Association, 2001, pp 431-448
Slochower JA: Holding and Psychoanalysis. Hillsdale, NJ, Analytic Press, 1996
Submitted January 12, 2006; accepted February 3, 2006. |
