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[6] Significance of the last time with the deceased at the hospice (Table 5)
 When asked about the meaning of the last time with a deceased member of the family at the hospice, 126 persons submitted a statement. Many of those who felt positive about the final moments said "I could spend meaningful final moment with the deceased, which helped to alleviate the sadness and supported me after my loss", or "It was an opportunity for me to grow". On the other hand, some people questioned the choice of hospice care and regretted having unresolved feelings about the treatment provided by medical staff.
 
Table 5 Significance of the last moments with the deceased at the hospice
Statement Number of responses
1.I'm glad we stayed at the hospice. 58
(Examples)
Appreciated the warmth and consideration of the staff and volunteers at the hospice.
Patient could have a peaceful and dignified death. Patient and families could spend a quiet final period at the hospice.
Patient could spend pain free final days.
Patient could spend the last day at
2. A positive final period helped to alleviate sadness after the loss of a loved one. 30
(Examples)
The final period patient and family together gave us strength.
The patient and his/her family could enjoy a quiet and relaxed environment, which helped to create a peaceful feeling.
The whole family was involved in nursing care until death, which was comforting for relatives and friends.
Feeling that everything possible was done, which was comforting for relatives and friends.
Provided time to say farewell.
The patient enjoyed his/her time at the hospice and spent it in a relaxed manner, which was comforting for relatives and friends.
3. Although pain was alleviated and it was good that the patient could spend a quiet final period, I had mixed feelings. 17
(Examples)
I should have hospitalized the patient earlier.
I was unwilling at first to allow the use of morphine.
I was reluctant due to the rapid progression near the end. I could not accept losing a loved one until the last moment.
I feel guilty for not understanding the feelings of the deceased.
I recall feeling depressed and in pain. I recall bitter feelings.
After my loss, I had mixed feelings of emptiness and relief.
Members of our family argued about hospitalization at the Hospice, and we are still at odds even after our loss.
I have been having sad feelings which I started to experience at the general hospital before hospitalization at the hospice.
4. It was an opportunity to think and learn about various things. 14
(Example)
Life and death, my own life, human relations, best type of medical services.
5. I have questions and some regrets about the choice of the hospice. 5
(Examples)
I still wonder whether or not it was good to choose the hospice.
The patient did not choose the hospice. I wonder whether the choice of the hospice was only to satisfy the family. I regret this.
6. I have unresolved feelings about the treatment by medical staff. 2
(Example)
I was approached their attempts to raise the patient's hopes by saying that he could return to society, and the pain could be alleviated during the counseling for hospitalization, even though it was quite unrealistic.
I have something to say to the staff when I have a chance to meet them.
 
Discussions
 
 This survey was designed to obtain data in support of bereavement care by analyzing the evaluation of bereavement care, health conditions after the loss of a loved one, and the significance of the last time with the deceased at the hospice. The survey results are considered important for focusing public attention on bereavement care in Japan and by using actual bereaved families as subjects.
 
[1] Feelings and needs for bereavement care
 Many respondents said that their family or friends were most supportive after their loss, but not many people listed medical professionals. Since existing medical services, except for those at a few local establishments, do not provide family care after death, there appears to be a general lack of awareness of the support needs of bereaved families by medical professionals.
 Bereaved families generally consented to accepting the program provided by the hospice and card sending was evaluated highest. However, the memorial ceremony and self-help group for the bereaved were rated lower. The reason for this may be that receiving a card is a passive act, whereas a memorial ceremony or a self-help group for the bereaved requires active participation. This may explain why self-support groups such as self-help for the bereaved are rare in Japan. Moreover, many people responded saying participation in self-help group made them "feel sadder". Such people do not like to meet others especially when it reminds them of the final moments with the deceased, which may have also had an influence on the evaluation of programs requiring active participation.
 Relatively younger age groups less than 60 years old evaluated the self-help group for the bereaved highly, which indicates that these groups need such an approach, or it may be that they are eager to try new ideas. Furthermore, the participants in memorial ceremony and self-help group for the bereaved families also evaluated them highly, which suggests at least some satisfaction with the program. Generally, however, there was no association between the characteristics of the respondents and evaluation of the program. This suggests that individual circumstances and other attributes had an effect on the evaluation of bereavement care and needs.
  In addition, since approximately 70% of the respondents said that a more personal approach such as telephone counseling or personal counseling is necessary, it is clear that individual needs in bereavement care need to be taken into consideration. At the same time, there were responses such as "the hospice should not concern itself with such matters" and "please leave me alone", Therefore, what type of program should be provided for whom will become an important topic in the future. Accordingly, methods to evaluate the care needs of each individual should be developed.
 
[2] Health conditions after the loss of a loved one and bereavement care
 In this survey, 40% of the respondents regarded themselves to be in poor health after the loss of a loved one, and many sought the care of physicians. Since the age of the respondents ranged from the 50 s to the 70 s and they were thus susceptible to health problems, it is difficult to establish a direct causal sequence of mental and physical health problems associated with a loss. However, death is one of the most stressful events in a person's life and many studies have shown that such personal loss has a major effect on the body and the mind. For instance, Parkes6) 7) reports that the frequency of consultation of a physician by widows after loss of their husband increased and the bereaved families were the most susceptible to sickness. In Japan, a study of the mental state of bereaved families utilizing GHQ was implemented, and demonstrated that many of the families had common problems such as fatigue, insomnia, irritations and nervousness.4) 5)
 In the DSM-IV, bereavement is differentiated from the diagnostic criteria for maladjustment and is classified as "conditions subject to clinical involvement"8) . However, it mentions that the presence of some types of symptoms uncharacteristic of "normal" grief reactions are useful for differentiating bereavement from major depressive episodes. Although we cannot confirm precise diagnosis of the respondents who reported that they had depression and required psychiatric treatment, such cases may be diagnosed as major depressive episodes.
 On the other hand, it is of definite interest that many people who experienced physical problems related such problems with their loss. Respondents associated physical disorders such as gastric ulcers, asthma, diabetes mellitus and developing cardiovascular diseases with their loss. This is a significant findings for an examination body and mind relationship during bereavement. However, the survey did not include any details of the degree of adversity, deterioration in physical condition, or progression of disorders, so that further discussion is not possible.
 Grief correlates with a great variety of factors, so that the risk of an outbreak of problems becomes high when these are compounded. Consequently, some type of intervention is necessary for high-risk individuals9) 〜11) . If some type of support were available to persons suffering from acute gastric ulcers or depression in the early stages after a loved one's death, bereaved families might be able to overcome their crisis. If risk assessment is conducted before death in order to predict the incidence of health problems, intervention at an early stage to meet the needs of the individual is possible.
 
[3] Significance of the last time with the deceased at the hospice and grief
  Many respondents felt that it was important to spend the final moments with patients at the hospice, which suggests that it helps to alleviate grief after their loss. In a survey of the bereaved families of patients who died at the hospice, which asked the question what was most comforting to surviving family members after their loss, Kashiwagi12) reports that a majority of the respondents stated that the patient "died in peace". Therefore, the way in which a terminal patient dies is important to how bereaved families express grief after their loss.
  On the other hand, persons who were unwilling to allow the use of morphine felt a lack of closure (unresolved) after the loss of a loved one. So it is possible that a lack of understanding and refusal to allow hospice/palliative care has an effect on the grief reaction after death. Of the people who did not reply, it is assumed that they had even more negative feelings. Throughout the entire process, from initial counseling to end stage, it is important to repeat explanations or discussions not only for patient care but also for grief care. In palliative care settings, one could say that grief care begins at the time of counseling for hospitalization.
  There are some points that we should pay attention to in interpreting the survey findings. First, the survey targets were bereaved families who spent the final moments at an independent-type hospice, that are very few in Japan. Consequently, our findings are not a representative of death experiences in palliative care settings in Japan, in general.
 In addition, since the recovery rate was 63%, it is possible that only interested persons replied. Moreover, it is possible that many favorable responses about the hospice were returned at the request of the Hospice where the patients received care. To deal with the sensitive psychological and social problems involved in grief management, semi-structured or longitudinal surveys after death should be conducted.
 
Conclusions
 
1) Many bereaved families who shared the patient's final moments at the hospice rated the bereavement care program highly.
2) Since telephone counseling or personal counseling was strongly requested, individual support appears to be a necessary part of bereavement care.
3) Although a little less than 40% of respondents reported deteriorating health after the loss of a loved one, it was noted that many persons associated such a crisis with physical disorders and their symptoms. By conducting risk assessment before death, intervention and support based on individual needs should be taken.
4) Since some respondents correlated the way they spent the final moments with the deceased with the degree of grief after their loss, bereavement care should begin before the patient's death.
 

References
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2) World Health Organization (ed) : Cancer pain relief and palliative care-for good support for life of cancer patients : Kanehara, p 44, 1933 (translated to Japanese)
3) Matstishima T, Akabayashi A, Nishitateno N : The current status of bereavement follow-up in hospice palliative care in Japan, Palliative Medicine 16 : 151-158, 2002
4) Sakaguchi Y, Kashiwagi T, Tsuneto S, et al : The mental health complaints of bereaved : an analysis of kinship to deceased. Jpn J Hospice and Palliative Care 9 : 228-233, 1999
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7) Parkes CM : The effect of bereavement on physical and mental health, Br Med J 2 : 274-279, 1964
8) The American Psychiatric Association : DSM-IV diagnostic and statistical manual of mental disorders. Igaku Shoin, p 683, 1998 (translated to Japanese)
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10) Sanders CM : Risk factors in bereavement outcome. J of Soc Lessues 44 : 97-111, 1988
11) Parkes CM : Determinants of outcome following bereavement. Omega 6 : 303-323, 1975
12) Kashiwagi T : Terminal care and the understanding of human beings. Mol Med 32 : 566-570, 1995







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