A discussion of opinion survey among bereaved families of patients with terminal cancer under home care

Since its foundation, general medical care as well as home medical care for patients with terminal cancer are provided at the hospital. In order to clear the doubt if patients/family members feel secure or insecure about home medical care provided since the initial consultation till death at home only by the hospital staffs, the opinion survey was conducted for family members who were also member of the team. At the hospital, home medical care is initiated if the patient himself/herself accepts the pathological condition. It is impossible to continue such a medical care without establishing the reliable relationship between patients/family members. Medical providers like us are just the advisors and collaborators to help patients peacefully accept the terminal disease. This survey reminded us of the necessity of conducting the opinion survey so that medical care won't be centered on medical providers.     

Examination of an after-hour emergency telephone consultation by Kizuna visiting nurse station

From inception, Kizuna visiting nurse station has been giving a 24-hour service because it is highly regarded as being most dependable in providing medical care service to a patient and family members since we started doing this service. Since an introduction of home care insurance system started, we provided telephone consultation as well as dispatching emergency visiting nursing service under an agreement with a fee that was named as "added emergency visiting nursing service fee". We examined and analyzed the emergency visiting nursing service contents based on the after hour telephone consultation given to patients and family members.     

Breaking Bad News: Patient Preferences and the Role of Family Members when Delivering a Cancer Diagnosis

Background: Western physicians tend to favour complete disclosure of a cancer diagnosis to the patient, while non-Western physicians tend to limit disclosure and include families in the process; the latter approach is prevalent in clinical oncology practice in India. Few studies, however, have examined patient preferences with respect to disclosure or the role of family members in the process. Materials and Methods: Structured interviews were conducted with patients (N=127) in the medical oncology clinic of a tertiary referral hospital in Bangalore, India. Results: Patients ranged in age from 18-88 (M=52) and were mostly male (59%). Most patients (72%) wanted disclosure of the diagnosis cancer, a preference significantly associated with higher education and English proficiency. A majority wanted their families to be involved in the process. Patients who had wanted and not wanted disclosure differed with respect to their preferences regarding the particulars of disclosure (timing, approach, individuals involved, role of family members). Almost all patients wanted more information concerning their condition, about immediate medical issues such as treatments or side effects, rather than long-term or non-medical issues. Conclusions: While most cancer patients wanted disclosure of their disease, a smaller group wished that their cancer diagnosis had not been disclosed to them. Regardless of this difference in desire for disclosure, both groups sought similar specific information regarding their cancer and largely favoured involvement of close family in decision making. Additional studies evaluating the influence of factors such as disease stage or family relationships could help guide physicians when breaking bad news.     

The attitudes of cancer patients and their families toward the disclosure of terminal illness.

PURPOSE:To ascertain the attitude of cancer patients and their families toward disclosure of terminal illness to the patient. PATIENTS AND METHODS: We constructed a questionnaire that included demographic and clinical information and delivered it to 758 consecutive individuals (433 cancer patients and 325 families that have a relative with cancer) at seven university hospitals and one national cancer center in Korea. RESULTS: 380 cancer patients and one member from each of 281 families that have a relative with cancer completed the questionnaire. Cancer patients were more likely than family members to believe that patients should be informed of the terminal illness (96.1% v 76.9%; P <.001). Fifty percent of the family members and 78.3% of the patients thought that the doctor in charge should be the one who informs the patient. Additionally, 71.7% of the patients and 43.6% of the family members thought that patients should be informed immediately after the diagnosis. Stepwise multiple logistic regression indicated that the patient group was more likely than the family group to want the patient to be informed of the terminal illness (odds ratio [OR], 9.76; 95% CI, 4.31 to 22.14), by the doctor (OR, 4.00; 95% CI, 2.61 to 6.11), and immediately after the diagnosis (OR, 3.64; 95% CI, 2.45 to 5.41). CONCLUSION: Our findings indicated that most cancer patients want to be informed if their illness is terminal, and physicians should realize that the patient and the family unit may differ in their attitude toward such a disclosure. Our results also reflect the importance of how information is given to the patient.     

Detection of nodular and superficial spreading melanoma with tumour thickness < or = 2.0 mm--an interview study.

Differences regarding signs and symptoms between nodular melanoma (NM) and superficial spreading melanoma (SSM) with a tumour thickness < or = 2.00 mm were studied. Reasons for seeking medical attention were also investigated. Semi-structured interviews were conducted with 22 patients with NM diagnosed between 1994 and 1999 and 32 patients with SSM, matched to the NM patients with respect to age at diagnosis, gender and tumour thickness. NM were smaller in diameter, and 5 of 6 patients reporting a diameter <5 mm had NM. NM were more often new lesions than SSM, which more often had developed from pre-existing naevi. In most cases (61%), the melanoma was first detected by the patient and in 17% it was detected by the patient in combination with a family member. The most important reasons to seek medical attention were a change in the lesion or a symptom (65%), followed by encouragement from others to seek medical attention. Twenty-four patients (44%) had no symptoms of melanoma prior to diagnosis. Our results have important implications for prevention. It should be emphasized in public education that melanomas may have a diameter <6 mm and that family members have an important role in detection of melanoma and in motivating medical advice.     

A Family-Systems Approach to the Patient with Cancer

The assumption that family relationships play an important role in the care and well-being of the cancer patient may be overlooked simply because it is so universal. Patients live in families, become sick in families, and receive medical care in families. Indeed, as Griffin (1) has noted, almost all medical treatment eventually becomes the obligation of family members:     

Management of advanced cancer patients after discharge

Our hospital carries the burden of providing high-level medical treatment, and at present patients who require constant attention tend to transfer to other hospitals rather than return directly home after being discharge from ours. We think, however, that the proportion of those who go directly to their homes will increase in the future. For this reason, one of our missions is to thoroughly understand the physical and social circumstances of each patient and coordinate with an area's medical community. For our patients to return home, we believe, that we are required to 1. gather sufficient information for them, 2. adjust treatment modes and gain firm control of their symptoms, 3. educate the patients' family members, 4. adjust family relationships, 5. coordinate area's medical professionals, and 6. re-adjust emergency medical services. Furthermore, because we are at the first step in the route of patients' return to their home, we need to grasp the hopes and desires of the patients once they are home. To meet these requirements, we need to know the activities in which patients can be involved at home, wishes of other members of their families and acquire information on available community resources and supporting organizations as well as thorough preparation to make such information widely known and ability to coordinate social resources and organizations.     

Involving family members in cancer care: focus group considerations of patients and oncological providers

Family members are an integral part of a patient's cancer care from the moment the diagnosis is delivered to the conclusion of treatment. Family members bring with them a range of emotional reactions, interpersonal dynamics and expectations for the care the patient receives. This study is part of a multi-institutional project to continue to improve the process of cancer care. In this study, 19 focus groups (11 patient and 8 provider) were conducted concerning issues related to doctor-patient communication in eight cancer centers in the United States. The content of the conversations was analyzed and thematic categories emerged that highlight the various strengths and difficulties associated with family involvement. The focus groups' comments support the need for explicit conversations between professional caregivers, patients and their loved ones, in order to negotiate the expectations and needs of each team member. Implications for clinical practice and strategies for working with family members are offered.     

Late referrals to specialized palliative care service in Japan.

PURPOSE: To clarify the bereaved family's perceptions about the appropriateness of timing when physicians first referred patients to palliative care units, and to identify the factors contributing to family-perceived late referrals. SUBJECTS AND METHODS: A multicenter questionnaire survey was conducted on 630 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 318 responses were analyzed (effective response rate, 62%). RESULTS: Half of the bereaved family members regarded the timing of referrals to palliative care units as late or very late, while less than 5% of families reported early referrals (very late [19%, n = 59], late [30%, n = 96], appropriate [48%, n = 151], early [1.6%, n = 5], and very early [2.2%, n = 7]). Multiple regression analyses revealed that the independent determinants of family-perceived late referrals were: family belief before admission that palliative care shortens the patient's life, insufficient in-advance discussion about preferred end-of-life care between patients/families and physicians, families' insufficient preparation for changes of patient conditions, and hospital admission before referrals. CONCLUSION: In Japan, the timing of referrals to palliative care units was late or very late from the families' perspectives. The independent determinants of family-perceived late referrals were: family misconception about palliative care, inadequate communication with physicians, and families' insufficient preparation for deterioration of patients' conditions. Systematic strategies to overcome these barriers would contribute to providing appropriate palliative care at all stages of cancer.     

Factors contributing to evaluation of a good death from the bereaved family member's perspective

Background: Although it is important to achieve a good death in Japan, there have been no studies to explore factors associated with a good death. The aim of this study was to explore factors contributing to a good death from the bereaved family members' perspectives, including patient and family demographics and medical variables. Methods: A cross‐sectional anonymous questionnaire survey for bereaved family members of cancer patients who had died in a regional cancer center and a medical chart review were conducted. We measured the results from the Good Death Inventory and family demographics. In addition, we extracted patient demographics, medical variables, and medical interventions in the last 48 h before death from a medical chart review. Results: Of the 344 questionnaires sent to bereaved family members, 165 responses were analyzed (48%). We found, first, that death in the palliative care unit was more likely to be described as a good death compared with death on a general ward. Some significant characteristics were ‘environmental comfort,’ ‘physical and psychological comfort,’ ‘being respected as an individual,’ and ‘natural death.’ Second, we found that a patient's and family member's age and other demographic factors significantly correlated with an evaluation of a good death. In addition, life prolongation treatment and aggressive treatment such as chemotherapy in the last 2 weeks of life were barriers to attainment of a good death. Moreover, appropriate opioid medication contributed to a good death. Conclusion: Withholding aggressive treatment and life‐prolonging treatment for dying patients and appropriate opioid use may be associated with achievement of a good death in Japan. Copyright © 2007 John Wiley & Sons, Ltd.     

Prospective study of families on a genetic cancer registry

The Familial Cancer Register, Moscow, established in 1990, has a record of pedigrees of 6,000 cancer patients. The records on the probands and families have been studied since 1995. The paper presents the data of a repeat survey of the families conducted in 1990-1995. Only 794 out of 3,000 families, included in the first survey, responded. Relapse was reported in 135 probands and/or relatives from 108 families. The following subgroups were identified depending on the rates of cancer morbidity in familial histories (the criteria are presented): 1) no incidence; 2) few cases; (3) more cases, and (4) all family members have cancer. New tumors were detected in one-third of such families. A direct correlation was found between the morbidity rates and neoplasia incidence. In 12 families of group 3, originally, not all the members had tumors.     

The validity of the family relationships index as a screening tool for psychological risk in families of cancer patients

The Family Relationships Inventory (FRI) has been proposed as a measure of psychological risk however its validity has only been tested in one cross-sectional study against another measure of family functioning where patients had less than six months to live. The current study presented longitudinal data on the validity of the FRI in identifying family dysfunction, and clinical levels of depression and anxiety in 48 families where the patient had been recently diagnosed. Over the three phases, the FRI identified all families at risk of family dysfunction, 88% or more families with one or more members with clinical depression and 78% or more with a member with clinical levels of anxiety. The FRI was also far more sensitive in identifying families with a member with clinical levels of depression and anxiety than the General Functioning (FAD-GF) scale of the Family Assessment Device. Although other measures of screening adequacy (such as specificity), suggested that the FRI identified too many false positives, the higher sensitivity of the FRI makes it preferable to the FAD-GF as a screening measure for families at risk of a poor psychological outcome in the oncology setting. However, because of the FRI's poor specificity, further follow-up of those families that are identified as being at some risk of a poor psychological outcome should be undertaken before referral to a mental health professional is warranted.     

Staged Improvement in Awareness of Disease for Elderly Cancer Patients in Southern China

Background: In mainland China, awareness of disease of elderly cancer patients largely relies on the patients’families. We developed a staged procedure to improve their awareness of disease. Materials and Methods:Participants were 224 elderly cancer patients from 9 leading hospitals across Southern China. A questionnairewas given to the oncologists in charge of each patient to evaluate the interaction between family and patients,patient awareness of their disease and participation in medical decision-making. After first cycles of treatment,increased information of disease was given to patients with cooperation of the family. Then patient awarenessof their disease and participation in medical decision-making was documented. Results: Among the 224 cancerelderly patients, 26 (11.6%) made decisions by themselves and 125 (55.8%) delegated their rights of decisionmakingto their family. Subordinate family members tended to play a passive role in decision-making significantly.Patients participating more in medical decision-making tended to know more about their disease. However, incontrast to the awareness of disease, patient awareness of violation of medical recommendations was reverselyassociated with their participation in medical decision-making. Improvement in awareness of diagnosis, stagesand prognosis was achieved in about 20% elderly cancer patients. About 5% participated more actively inmedical decision-making. Conclusions: Chinese elderly cancer patient awareness of disease and participationin medical decision-making is limited and relies on their family status. The staged procedure we developed toimprove patient awareness of disease proved effective.     

Questionnaire survey for doctors in the area of cooporation efforts when a terminal cancer is transformed to home medical care

In order to smoothly transform a terminal cancer patient from hospital to home medical care, we surveyed based on questionnaires to examine doctor's roles of each primary and regional hospitals and its cooperation among the hospitals. We established two types of questionnaires for two groups, a primary doctor group and a regional doctor group, and distributed and collected them. A total of 123 doctors (35 primary doctors and 88 regional doctors) responded out of 185 doctors, and the collection rate was 66.5%. The survey result indicated that there were significant differences among the primary and regional doctors in evaluating patient's family members for understanding of the patients disease at the time of discharge, how to give a treatment to the patient, alleviating patient's disease conditions and a mental support given by doctor to family members from the hospital. Meanwhile, about 70% of regional doctors answered that family members had some sort of anxieties during a night and at the time of emergency to care the patient. It also revealed that about 70% of regional doctors had experienced troubles in coordinating with a primary hospital. On the other hand, 62% of primary doctors answered that they always provided necessary care to the patient at the time of emergency. In providing a safe and a high degree of QOL in home medical care settings, it is important to have specific common purposes among the two groups of doctors and patients. Furthermore, the primary and regional doctors have to be cooperative, specify duty roles when the patient is transformed to home medical care, and to have ways to accomplish mutual common goals for patients.     

Recommendations to improve identification of hereditary and familial colorectal cancer in Europe

Familial colorectal cancer (CRC) accounts for 10–15% of all CRCs. In about 5% of all cases, CRC is associated with a highly penetrant dominant inherited syndrome. The most common inherited form of non-polyposis CRC is the Lynch syndrome which is responsible for about 2–4% of all cases. Surveillance of individuals at high risk for CRC prevents the development of advanced CRC. About 1 million individuals in Western Europe are at risk for Lynch syndrome. We performed a survey to evaluate the strategies currently used to identify individuals at high risk for CRC in 14 Western European countries. Questionnaires were distributed amongst members of a European collaborative group of experts that aims to improve the prognosis of families with hereditary CRC. The survey showed that in all countries obtaining a family history followed by referral to clinical genetics centres of suspected cases was the main strategy to identify familial and hereditary CRC. In five out of seven countries with a (regional or national) CRC population screening program, attention was paid in the program to the detection of familial CRC. In only one country were special campaigns organized to increase the awareness of familial CRC among the general population. In almost all countries, the family history is assessed when a patient visits a general practitioner or hospital. However, the quality of family history taking was felt to be rather poor. Microsatellite instability testing (MSI) or immunohistochemical analysis (IHC) of CRC are usually recommended as tools to select high-risk patients for genetic testing and are performed in most countries in patients suspected of Lynch syndrome. In one country, IHC was recommended in all new cases of CRC. In most countries there are no specific programs on cancer genetics in the teaching curriculum for medical doctors. In conclusion, the outcome of this survey and the discussions within an European expert group may be used to improve the strategies to identify individuals at high risk of CRC. More attention should be given to increasing the awareness of the general population of hereditary CRC. Immunohistochemical analysis or MSI-analysis of all CRCs may be an effective tool for identifying all Lynch syndrome families. The cost-effectiveness of this approach should be further evaluated. All countries with a CRC population screening program should obtain a full family history as part of patient assessment.     

Medical student teaching in the UK: how well are newly qualified doctors prepared for their role caring for patients with cancer in hospital?

A number of studies have identified problems with undergraduate oncology teaching. We have investigated how well prepared newly qualified doctors (first foundation year, or FY1 doctors) are for treating patients with cancer. Twenty-five FY1 doctors and 15 senior doctors participated in interviews. We turned the emergent themes into a questionnaire for all 5143 UK FY1 doctors in 2005. The response rate was 43% (2062 responses). Sixty-one percent of FY1 doctors had received oncology teaching at medical school, but 31% recalled seeing fewer than 10 patients with cancer. Forty percent of FY1 doctors felt prepared for looking after patients with cancer. Sixty-five percent felt prepared for diagnosing cancer, 15% felt they knew enough about chemotherapy and radiotherapy, and 11% felt prepared for dealing with oncological emergencies. Respondents believed medical students should learn about symptom control (71%) and communication skills (41%). Respondents who had received oncology teaching were more likely to feel prepared for looking after patients with cancer (OR 1.52; 95% CI 1.14-2.04). Preparedness also correlated with exposure to patients with cancer (OR 1.48; 95% CI 1.22-1.79). We have found worryingly low levels of exposure of medical students to patients with cancer. First foundation year doctors lack knowledge about cancer care and symptom control. Oncologists should maintain involvement in undergraduate teaching, and encourage greater involvement of patients in this teaching.     

Internet usage among women with breast cancer: an exploratory study

An increasing number of breast cancer patients are accessing the Internet for medical information. A survey was administered to breast cancer patients and their families attending follow-up outpatient clinics in a comprehensive cancer care center to explore their frequency of Internet use, their motivation for online activity, the type of information they sought, and the perceived impact of the information they found on the Internet on their medical care. The survey was conducted over a 4-month period. A total of 107 surveys were returned. Seventy-nine of these (74%) were from patients while 28 (26%) were from family members and friends. Thirty-four of the patient responses (43%) indicated that the patient had used the Internet to look for cancer-related information. Patients who had used the Internet to access cancer-related information were significantly younger (P = 0.007), better educated (P = 0.027), and less satisfied with the amount of treatment-related information given by caregivers than those patients who had not used the Internet to access cancer-related information (P = 0.032). The majority of patient Internet users desired more information on their cancer and its treatment (91%), looked up information that was presented to them by their clinicians (66%), researched other treatment options (63%), and obtained more information on "alternative treatments" (63%). Patient Internet users generally found the cancer-related information on the Internet to be useful, and the majority discussed Internet-derived information with their health care providers and perceived that clinicians listened to such information. However, 53% were undecided about the trustworthiness of the medical information obtained via the Internet. Internet nonusers commonly lacked Internet access (53%) or were unfamiliar with the Internet (33%), but few (13%) distrusted Internet-derived information. This exploratory study underscores the need for more research in this area, specifically with the aims of identifying and verifying factors that lead patients to use the Internet and the impact of their online activities on their medical care.     

Discussion on care management operation of a visiting nurse--a case of increased ADL by the support of independent life

In addition to the visiting nursing service conventionally provided, the Department of Long-term Care Insurance Service of this hospital inaugurated the home care supporting service in April 2000. Senior citizens rated higher in the degree of necessity of care in the initial accreditation and in the renewal accreditation of the Long-term Care Insurance tend to have fewer changes in the services for the last two years. At present, care managers of various professions are involved in the home care supporting services and have no choice but to provide care in non-specialty areas. Under the situation, care management by the visiting nurse helped an elderly increase ADL and live on his own, and the case is introduced in this article. Mr. K.T. developed angina pectoris at the age of 76, had recurrences of complications and repeated transfers of hospitals and was eventually admitted to the hospital. Though he had declined muscular strength and ADL because of the long bed-ridden life, he was discharged from the hospital. Nursing services centered on visiting nursing were provided as the home care supporting service when home medical care for the patient was started. Since Mr. K.T. required medical management, he and his family members were not sure whether it is possible to provide care for him at home and required guidance about health/life and mental supports. Therefore, visiting nursing care was provided by a nurse to assess needs or condition of the person, which reduced anxiety and encouraged the person. As a result, ADL increased and the degree of necessity of care decreased from 4 to 2. This success is attributed to the visiting nurse's appropriate care management based on the medical expertise from the perspective of nursing and the introduction of necessary services at the necessary time based on the appropriate assessment of changes in the physical condition or willingness and the nursing condition of family members. Coordination with the staffs engaged in each service also contributed to the success. As shown by this case, it may be necessary for care managers who can exercise their specialty to be engaged in the service or to change care managers depending on the condition of the care service receiver or considering the specialty of care managers for the benefit of the care service receiver and for the improvement of the efficiency of the operations.     

Experiences of Nursing Students in Caring for Pediatric Cancer Patients

Background: This study was performed to determine the experiences of nursing students in caring forpaediatric cancer patients and their families. Materials and Methods: This qualitative survey was carried outwith 14 students studying in the nursing department of the Faculty of Health Sciences of a university in Edirne,Turkey. Data were obtained through focus group interviews and evaluated based on a qualitative content analysis.Results: It was determined that students, for the most part, experienced problems related to communication,sadness, helplessness, fear, anxiety, resentment and anger. In addition, the students were affected most often byeffects of the disease and invasive procedures on paediatric cancer patients and their families during the processof caring for them in the oncology clinic. Conclusions: It would be useful to inform nursing students, prior toclinical practice, about the special needs of paediatric cancer patients and families who stay in oncology clinics,and to follow up with appropriate guidance during the clinical practices.