Tatsuko MATSUSHIMA, RN, MA^*　Akira AKABAYASHI, MD, PhD^**　Kenji NISHITATENO, MD, PhD^*

　

　

　To explore the implementation of bereavement care in hospice/palliative care settings in Japan, a self-administered questionnaire was sent to 235 family members of the deceased at one hospice. The survey was conducted in May, 1999, and the recovery rate was 62.6%. Sixty percent of the respondents were female and about half of these were widows. Most of the respondents highly evaluated the bereavement care the hospice had provided, consisting of "card-sending (83.6%) ", "annual memorial ceremony (72.8%) ", and "self-help group for bereavement (63.9%) ". Respondents less than 60 year old evaluated self-help group significantly more than those over 60 (p＜0.01).Strong needs for "telephone counseling" and "personal counseling" were also recognized, indicating that individually oriented care is an essential part of bereavement care.

　About 40% of the respondents answered that they had aggravated or newly developed health problems after a death in their family. Their physical health problems included cardiovascular diseases such as ischemic heart diseases and hypertension, gastroenteric diseases such as peptic ulcers and colon polyps, respiratory diseases including asthmas, diabetes mellitus, nephritis, thyroid disorders, rheumatoid arthritis, liver dysfunction and cataracts. They also complained of subjective symptoms such as headache, vertigo, general malaise, appetite loss, change in body weight. As psychiatric health problems, only one case of major depression and one of a specific phobia (riding trains) were reported, while many other complaints included depressive mood, inhibition, anxiety, agitation, insomnia, withdrawal, hallucinations and suicidal idea. About 50% of those who listed "physical" health problems related them to their family member's death. Since the loss of a family member and loved one is a strong stressor for both physical and psychiatric health, risk assessment for surviving family members is needed before the death of hospice patients, and appropriate intervention for each individual to prevent future health problems should be implemented.

　As to the question what their last time with the deceased at the hospice meant to them, many expressed positive feelings. Some respondents mentioned the way the family member dealt with the dying patients and the severity of grief after their death is related. For example, "Since our last time with the patient at the hospice was joyful, our grief is less than expected". These results strongly indicate that bereavement care should be started while the patients are still in the process of dying.

　

■Key words : Terminal care, hospice/palliative care, grief, care for the deceased, bereavement care

　

　

　The experience of losing a loved one can have a mental and physical effect on those left behind and can cause various mental and physical symptoms or behavioral changes¹⁾. At actual sites of palliative care or hospices for terminal patients, care for a patient's family should be provided not only during the terminal stage but also after death²⁾. Despite the introduction of various support programs in Japan³⁾ where the mental state of bereaved families have been reported^4,5), systematic surveys and research on the feelings or needs of the bereaved themselves, who are the target of such programs, have not yet been implemented. The objective of this study was to examine the implications for future bereavement care through a survey of the evaluation of bereavement care by bereaved families, their health conditions after the loss, and the meaning of their last time with the deceased at a hospice.

　

　

　The subjects were 235 of 274 bereaved family members who received bereavement care at the Peace House Hospice (independent type) between April 1995 and March 1998. In May 1999 a selfadministered questionnaire was mailed to the primary caregivers. Evaluations about the hospice's program up to the present and the best way to provide future care were covered, including state of health after the loss and the meaning of the last time with the deceased at the hospice (Table 1). χ² test was applied for bivariate analysis. Similar replies to open questions were also categorized.

　

　

　Valid responses of 147 persons could be obtained (62.6% response rate). Approximately 60% of those interviewed were women, many of whom were in their 50 s or 60 s. Almost half were not employed and more than half belonged to no specific religion. The period from diagnosis of cancer of the deceased until death was less than three years for approximately 80% of the respondents. For approximately 90%, the hospitalization period was within 3 months.

　

　The Peace House Hospice provides bereavement care such as card sending, an annual memorial ceremony and a self-help group for the bereaved. Approximately 80% rated the card sending as either "very good" or "good", while about 70% responded positively about the memorial ceremony. The over-all sentiment was therefore positive.

　When we asked the 65 respondents who did not participate in the memorial ceremony for the reasons for their absence (multiple answers) , 25 answered that there was "a scheduling problem", 24 that they "felt sad to go to the hospice", 14 that they "felt uncomfortable in large gatherings", eight that it was "bothersome to go to the hospice", and seven that they were "in poor health". Other responses included "did not want to talk anymore", "wanted to forget", "difficult to go out due to nursing care at home", and "felt that it was not necessary for me".

　On the other hand, approximately 60% positively evaluated the self-help group for the bereaved, but approximately 30% said they "could not say whether or not it was good". When the 81 people who did not join, in the self-help group for the bereaved were asked for reasons for their non-participation (multiple answers) , 31 said "it made them feel more sad", 20 replied they "did not think about it", and 20 responded they "did not feel it was necessary". In ), 10 people said they "did not clearly understand the objectives", and five responded they "did not think it was interesting". Other reasons included "did not like the objectives" , "did not feel like talking with other persons about the deceased", and "still have unresolved feelings".

　Bivariate analyses were performed using a χ² test by dividing the respondents into two groups those who replied "very good" and "good", and those who answered "could not say whether it was good or bad", "not very good" or "definitely not good".Nine characteristics such as sex, age (less than 60, and 60 or over), relationship (spouse or other relationship), occupation (unemployed or other), religion, period from diagnosis of cancer until death (less than 1 year, and 1 year or more) , hospitalization period (less than 1 month, and 1 month or more) , and period after death (less than 2 years, and 2 years or more) were selected. For evaluation of the memorial ceremony and self-help group for the bereaved, association with participants (members) and non-participants (non-members) were also examined.

　

　

　The results did not reveal any significant correlations between the items evaluated, such as card sending, the memorial ceremony and characteristics of respondents. Only in terms of age, the number of persons under age 60 who responded "very good" and "good" for the self-help group was significantly higher than that of people age 60 or over (χ²=5.1, p＜0.05). Moreover, significantly larger number of participants (members) than non-participants (non-members) evaluated both the memorial ceremony and self-help group for the bereaved as "very good" or "good" (χ²=17.9, p＜0.01, χ²=27.7p＜0.01)

　

　

　

　When asked about the introduction of telephone counseling or personal counseling and group therapy at the hospice, 98 persons felt that it was necessary (66.7%), 39 that it was not necessary (26.5%), and 10 (6.8%) did not respond.

　The only correlation between the need for a program and characteristics mentioned earlier was by age group. The number of persons below age 60 who felt it was necessary was significantly higher than that of people age 60 or over (χ²=4.0, p＜0.05).When persons who replied it was necessary were asked which program was necessary (multiple answers) , 51 specified personal counseling, 46 telephone counseling, 38 family counseling and 34 group therapy.

　On the other hand, when persons who replied it was unnecessary were asked for their reasons (multiple answers), 13 persons replied that "I have a close person who I can confide in", 12 that "the hospice does not need to provide such programs", 11 that "there is no need for counseling", and 10 that "it is bothersome to go to the hospice". Other responses included "I want to be left alone", "I would like to have an access to counseling when I need it", and "I want the hospice to concentrate on providing good care for inpatients and their families instead of bereavement care".

　

　

　Regarding the question on deterioration in health after the loss of a loved one, 56 persons replied in the affirmative (38.1%), 85 in the negative (57.8%) , and six gave no response (4.1%). Of those who said "yes", 51 had specific statements (35 had physical disorders and 22 had mental disorders).

　Physical problems included various organs such as the cardiovascular system, gastrointestinal, respiratory and endocrine systems. Physical symptoms such as unidentified complaint syndrome were frequently mentioned. Depression and phobia were diagnosable mental conditions while others symptom suggested depression or hallucination and thoughts of suicide.

　It should be noted that many people listed as having physical problems and symptoms (17 persons : 48.6%) associated their condition or deterioration with their loss. Example of these responses are, "I was hospitalized for 2 weeks due to acute gastroenteritis after my loss", "I was hospitalized for the removal of a rectal polyp caused by stress", "insomnia, gastroentic disorders and lumbago persisted due to an extreme feeling of loss when my husband's ashes were gone", "I received hospital treatment for asthma and tinnitus when I thought I did not need nursing care" and "I lost about 5 kg after my loss, so now I am susceptible to colds."

　

　Concerning the question of who supported them after their loss (multiple answers), 80 persons mentioned their children, 38 their friends, 34 their brothers and sisters, 24 their spouses, and 16 their parents. Only a few persons mentioned doctors and other medical professionals. In addition, two people mentioned their pets.