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臨床研究
Bereavement Care in Hospice/Palliative Care Settings : A Survey of the Family Members of Deceased about Bereavement Care and Future Prospects
Tatsuko MATSUSHIMA, RN, MA* Akira AKABAYASHI, MD, PhD** Kenji NISHITATENO, MD, PhD*
 
Abstract
 
 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
 
Introduction
 
 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 reported4,5), 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.
 
Subjects and Methods
 
 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.
 
Results
 
[1]Characteristics of respondents (Table 2)
 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.
 
[2]Evaluations of bereavement care at the hospice(Table 3)
 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.
 
Table 1 Contents of the questionnaire
Q1. First, we would like to ask you about the deceased.
(1) What was your relationship to the deceased?
(2) How long was the period from diagnosis of cancer to death?
(3) How long was the deceased hospitalized at the Peace House Hospice?
(4) How long has it been since the deceased passed away?
Q2. The Peace House sends a card to the family of the deceased. How do you feel about this?
Q3. The Peace House holds an annual memorial ceremony for bereaved families of persons who have died at the hospice.
(1) How do you feel about the memorial ceremony?
(2) Have you attended an annual memorial ceremony?
(a) If "Yes", please answer (A). (b) If "No", please answer (B).
(A) Persons who attended : How did you feel about the ceremony?
(B) Persons who did not participate : Why did you not attend?
Q4. The Peace House has set up a "self-help group for the bereaved" as a voluntary group independent of the hospital.
(1) How do you feel about the Peace House self-help group for the bereaved?
(2) Did you join the Peace House self-help group for the bereaved?
(a) If "Yes", please answer (A). (b) If "No", please answer (B).
(A) Persons who joined : How did you feel about the self-help group?
(B) Persons who did not join : Why did you not join?
Q5. Apart from the above-mentioned "card sending", "memorial ceremony" and "self-help group for the bereaved", a telephone counseling program, and personal counseling and group therapy when needed is currently being considered by the Peace House.
(1) Do you think such a program should be provided at a hospice?
(a) If "Yes", please answer (A). (b) If "No", please answer (B).
(A) Persons who feel it is necessary : What type of program is necessary?
(B) Persons who feel it is unnecessary : Please explain why.
Q6. How meaningful was it to you to spend the final moments with a family member (or friend) at a hospice? Please respond candidly.
Q7. After the loss, who supported you the most?
Q8. After the loss, did your health worsen?
(a) Yes : If possible, please describe your condition at that time and what happened since then.
(b) No
Lastly, we like to ask you about yourself.
1.Sex : (a) Male (b) Female
2.Age : ( )
3.Occupation : (a) Self employed (b) Full-time employee (c) Part-time employee (d) Unemployed (including students and fulltime housewives) (e) Other
4.What is your religious affiliation?
(a) Buddhism (b) Shinto (c) Christianity (d) Other religion ( ) (e) No religion
 
 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)
 
Table 2 Socio-demographic characteristics of the respondents(n=147)
1. Sex
Male 61 (41.5%) Female 85 (57.8%) NA 1 (0.7%)
2. Age
30's or younger 11 (8.8%) 40's 17 (11.6%) 50's 40 (27.2%)
60's 39 (26.5%) 70's or older 28 (19.0%) NA 10 (6.8%)
3. Relationship with the deceased
Wife 45 (30.3%) Husband 41 (28.3%) Child 37 (25.5%)
Parent 5 (3.4%) Brother or Sister 13 (8.8%) Others 6 (4.1%)
4. Occupation
None (including housewives and students) 67 (45.6%) Full-time 33(22.4%) Part-time 11(7.5%) Others 30 (20.4%) NA 6 (4.1%)
5. Religion
Buddhism 38 (25.9%) Christian 17 (11.6%) Shinto 2 (1.4%) Others 4 (2.7%) None 81 (55.1%) NA 5 (3.4%)
6. Period between diagnosis of cancer and death of the patient
Less than 6 months 38 (25.9%) Less than 1 year 27 (18.4%)
Less than 3 years 47 (32.0%) Less than 5 years Z3 (15.6%)
More than 5 years 12 (8.2%)
7. Length of stay in the hospice
Less than 1 week 21 (14.3%) Less than 1 month 52 (35.4%)
Less than 3 months 60 (40.8%) Less than 1 year 13 (8.8%)
More than 1 year 1 (0.7%)
8. Period of mourning
Less than 1.5 year 27 (18.4%) Less than 2 years 29 (19.7%)
Less than 2.5 year 29 (19.7%) Less than 3 years 32 (21.8%)
More than 3 years 30 (20.4%)
Numbers in parenthesis indicate percentages, NA: No Answer
 
Table 3 Evaluation of the bereavement programs by the respondents(n=147)
Card sending : cards were sent 1.6, and 12 months after the death of the patient, Annual memorial ceremony : the family members who experienced their loved one's death within 6 to 12 months were invited. Hospice staffs attend including a chaplain, Self-help group for the bereaved : Self-support group organized voluntarily by the family members who experienced their loved one's death at the hospice, The hospice provides only space for them.
Numbers in parenthesis indicate percentages, NA : No Answer
 
[3]Future needs for bereavement care
 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".
 
Table 4 Health problems after a death in the family
1. Physical health problems(35 persons)
(1) Specific diseases developed
 Cardiovascular disease (ischemic heart disease), liver dysfunction, diabetes mellitus, hypertension, cerebrovascular diseases, pneumonia, asthmatic attacks, gastric ulcers, gastrointestinal disorders, colon polyps, nephritis, rheumatism, thyroid function disorders, cataracts, gynecological disorders, etc.
(2) Unspecific symptoms
 Headaches, vertigo, slight fever, general malaise, tinnitus, appetite loss, heartburn, stomachache, taste disorder, body dysesthesia, weight loss, weight gain, etc.
2.Psychiatric health problems (22 persons)
(1) Specific diseases developed
 Depression (requiring hospitalization), phobias (riding the train)
(2) Mental symptoms
 Insomnia, hallucinations, suicidal ideas, uneasiness, anxiety, enervation, depressive mood, withdrawal (do not want to meet people, do not feel like going out), inattention, discouragement, continuing unresolved feeling, etc.
*6 persons mentioned both physical and psychiatric problems.
 
[4] State of health after the loss of a loved one (Table 4)
 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."
 
[5] Support after the loss of a loved one
 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.
 

* Peace House Hospice
** School of Public Health, Kyoto University Graduate School of Medicine
本論文は『心身医学』(2001年8月, 第41巻第6号)に掲載された日本語論文を英文化したものである。







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