Development of a community care system for patients with amyotrophic lateral sclerosis in the Hiroshima Bihoku region

To understand the various problems of medical treatment and home care of ALS patients, we analyzed 23 ALS patients who live in the Bihoku region of Hiroshima prefecture. The ages of patients ranged from 50 to 88 years old. One patient was controlled with mechanical ventilation. The patients and their families utilized available home health care services well. A care manager managed to find appropriate resources for the patients as the disease progressed. Although limited in resources, patients' friends and neighbors offered an informal community support. An early approval of support enabled the patient to initiate home care. The incidence of hospitalization due to social reasons was higher in patients without communication to a care manager or without well cooperative support. Assessments of patient and family needs are important for a development of a community care system. It is also essential for all of the patients to have a good cooperative relationship.     

Home care practice in Ishigaki Island, Okinawa

In Yaeyama district in Okinawa, despite the scarcity of health-care resources for home visit, most of the patients used to choose home care instead of in-hospital care because of their special beliefs and preference different from mainland. Since people resided in a large family and formed a tightly knit community, patients were able to receive care from their family and community members. However, together with increase in chronic care facilities and modernization of the island that have brought downsizing of the family unit and loose community, the elderly are facing difficulty in receiving home care due to lack of care-givers. In order to establish the system to support the patients who wish to receive domiciliary care and live at home in their own life style, Yaeyama Hospital is expected to provide community-based health-care services 24 hours a day. It is essential that medical and welfare professions who are in charge of home care maintain close relations in good communication and collaboration.     

An oncology volunteer support organization: The benefits and fit within the health care system

Psychosocial support programs and organizations provide a range of resources to cancer patients and their families. In spite of well-documented research attesting to their positive impact, such organizations are often not well integrated into the medical system. This paper examines the benefits to patients and families of using Hope and Cope, a voluntary support system. Also, it explores the ways in which these benefits may relate to the health care team. A total of 121 patient users and non-users of Hope and Cope and 50 family members were surveyed about their specific needs and how they were met. The users and non-users assessed their needs for information and emotional support differently: those with greater needs utilized the resources and were satisfied with the outcomes, while those with fewer needs did not. The need for emotional support significantly discriminated users of Hope and Cope from non-users. Participants saw the program as helping them manage side effects, handle medical treatment, and know which questions to ask their physicians. This study concludes that patients appear to choose wisely according to their needs and that organizations such as Hope and Cope help. However, questions are raised about the relationship between the health care team and voluntary support programs. How and when information about resources is conveyed to patients continues to be problematic. Responses to these concerns may lead to strategies to increased collaboration between oncology volunteer support services and the health care team.     

How to supply information to pharmacies during the inpatient transition to home care-information supply booklet required of pharmacies when collaborating on regional medical care

Recently, medical institutions have been actively trying to reduce the number of inpatients. When inpatients make a transition to home care, the first step is to ensure that they have a homecare doctor, and that a visiting nursing station and pharmacy are available. Next, home care services must be determined once hospital care information has been obtained and the wishes of the patient and their family have been established. However, pharmacies are often only contacted the day or the day before a patient is discharged from the hospital, so they are burdened with a considerable amount of preparation. Based on the information pharmacies need, we therefore created an Information Supply Booklet that medical institutions can hand to pharmacies upon discharge of patients. The entries have been classified according to core and non-core issues for pharmacies. This type of Information Supply Booklet is needed to help patients efficiently adjust to their post-discharge environment. In the future, we would like to revise this booklet into a common national format which would incorporate the views of medical institutions.     

Cancer diagnosis and prognosis in Taiwan: patient preferences versus experiences

Considering the emphasis of nonmaleficence and beneficence and the relative power of family, there is a well-recognized suggestion that, in Asian culture, informing cancer patients about their diagnosis and prognosis should be modified according to the family's opinion. However, up until now, except in Japan, the argument that cancer patients from an Asian culture have different preferences about being informed of their diagnosis and prognosis has not been demonstrated by evidence-based studies especially by directly exploring cancer patients' preferences. The purpose of this study was to describe Taiwanese cancer patients' knowledge and experiences of being informed of their diagnosis and prognosis. Preferences of information from health-care professionals and attitudes toward disclosing information to family and even respecting family's opinions not to disclose the life-threatening diagnosis and prognosis to patients have also been explored from the patient's point of views. Evidence from this study demonstrated that Taiwanese cancer patients' information needs are substantial. However, the common practice of nondisclosure of prognosis and detailed disease-related information by health-care professionals continues. Cancer patients in Taiwan expressed a strong preference for health-care professionals to inform them of disease-related information before disclosing information to their family members. Health-care professionals need to consider and respect cancer patients' views rather than routinely taking the family's opinions into consideration first in the event of disagreement.     

Pain control at home in cooperation with hospitals

At present, many patients heavily dependent on medical care live at home. Therefore, the need for pain control at home is increasing. Within the limits of home care, the method used to control pain control is very important. Here we report 2 cases who need more than 1,000 mg of morphine (converted into oral administration). And we introduce our method for pain control at home. Our method is as follows: 1. Before the patient is discharged from the hospital, we go to the hospital and confirm the patient's condition and pain. 2. If necessary, before the patient is discharged from the hospital, we request to change instruments for home care. 3. We select the best way (instruments, circuits, administration) in consideration of the patients' or their families ADL. 4. When we change a route from oral administration to injection, we let the patient enter the hospital temporarily to adjust the quantity of morphine.     

Quality of life of women with recurrent breast cancer and their family members.

PURPOSE: Little information is available about the effects of recurrent breast cancer on the quality of life of women and their family members. The present study assessed patients' and family members' quality of life within 1 month after recurrence, and effects of multiple factors on quality-of-life scores. PATIENTS AND METHODS: Patient/family member dyads (N = 189) participated in this study. A stress-appraisal model guided selection of person factors, social/family factors, illness-related factors, appraisal factors, and quality of life, measured with psychometrically sound instruments. Quality of life was measured with both generic (Medical Outcomes Study SF-36) and cancer-specific (Functional Assessment of Cancer Therapy) scales. RESULTS: Patients reported significant impairments in physical, functional, and emotional well-being. Family members reported significant impairments in their own emotional well-being. Structural equation modeling revealed that self-efficacy, social support, and family hardiness had positive effects on quality of life, whereas symptom distress, concerns, hopelessness, and negative appraisal of illness or caregiving had detrimental effects. Study variables accounted for a sizable amount of variance in patients' and family members' physical and mental dimensions of quality of life (72% to 81%). Contrary to findings observed in studies of newly diagnosed breast cancer patients and spouses, little relationship was found between recurrent patients' and family members' quality of life. CONCLUSION: Women with recurrent breast cancer are in need of programs to assist them with the severe effects of the disease on their quality of life. Programs need to include family members to help counteract the negative effects of the recurrent disease on their mental health, and to enable them to continue as effective caregivers.     

Localized Prostate Cancer Treatment Decision-Making Information Online: Improving its Effectiveness and Dissemination for Nonprofit and Government-Supported Organizations

The current study reports findings from evaluation research conducted to identify how online prostate cancer treatment decision-making information can be both improved and more effectively disseminated to those who need it most. A multi-method, multi-target approach was used and guided by McGuire's Communication Matrix Model. Focus groups (n?=?31) with prostate cancer patients and their family members, and in-depth interviews with physicians (n?=?8), helped inform a web survey (n?=?89). Results indicated that physicians remain a key information source for medical advice and the Internet is a primary channel used to help make informed prostate cancer treatment decisions. Participants reported a need for more accessible information related to treatment options and treatment side effects. Additionally, physicians indicated that the best way for agencies to reach them with new information to deliver to patients is by contacting them directly and meeting with them one-on-one. Advice for organizations to improve their current prostate cancer web offerings and further ways to improve information dissemination are discussed.     

The role of informatics in promoting patient-centered care

Patient-centered care is an important aspect of high-quality care. Health informatics, particularly advances in technology, has the potential to facilitate, or detract from, patient-centered cancer care. Informatics can provide a mechanism for patients to provide their clinician(s) with critical information and to share information with family, friends, and other patients. This information may enable patients to exert greater control over their own care. Clinicians may use information systems (e.g., electronic medical records) to coordinate care and share information with other clinicians. Patients and clinicians may use communication tools and information resources to interact with one another in new ways. Caution in using new information resources is warranted to avoid reliance on biased or inappropriate data, and clinicians may need to direct patients to appropriate information resources. Perhaps the greatest challenge for both patients and providers is identifying information that is high quality and that enhances (and does not impede) their interactions.     

Reason why home hospice is not widespread in Japan

A home hospice care program was begun at Fukushima Rousai Hospital in 1987. Nowadays, fifty percent or more of patients who die of cancer use this program, and patients who die in their own homes have reached about 40 percent. Based on our experience, we analyzed the factors in why home hospice care is not widespread in Japan, and pointed out some factors as follows. The main factors are insufficient disclosure of information regarding diagnosis and disease progression, poor palliative care, and incompleteness of the visit medical treatment system. Other factors are doctors' zeal for cure, patients' and/or families' excessive expectation of recovery, insufficient numbers of doctors and nurses with knowledge and skills concerning the home hospice care, doctors' and/or families' conviction that death in the hospital is natural, lack of social systems that support the family, limitations in the use of medicine at insurance drugstores, and the fact that insurance cannot be adjusted for medical treatment in the patients' home.     

The present situation of home infusion therapy (HIT) and the problems of coordinated service

Fujisawa Pharmaceutical Co., Ltd. established its home care business division in April, 1995. On the assumption that the patients have the final say in decision making, we aim at smooth operation of home care, adjusted to each patient's needs, which will lead to improvements in quality of life (QOL). Approximately 700 patients took advantage of our pharmacy service between April, 1995 and March, 1999; of them, almost 80 percent had a malignant tumor in the terminal stage and were receiving home parenteral nutrition (HPN). Patient ages ranged from the 50s to the 80s. The number of patients with a malignant disease who take advantage of medical treatment by family doctors or a visiting nurse station is less than that of patients with a benign disease. Following are the problems of coordination for HIT patients: 1) difficulty in understanding the patient's or their family's actual thoughts about home care, 2) insufficient information from the medical staff to the patient or their family for decision making, 3) insufficient coordination in the medical organization, and 4) failure of information exchange between the medical organization's staff and the home-care staff. In order to operate a home care service which can improve QOL, information exchange and cooperation among the members of the home care team is essential.     

Problems and potential solutions of regional palliative care: a trial of the multiregional and multidisciplinary conference in the OPTIM study

Quality palliative care is required at the community level, and interaction among multidisciplinary practitioners from various regions might be useful for improving community palliative care. The aims of the present study are: 1)to evaluate the participant's-perception of the usefulness of the interactive conference of multidisciplinary multiregional healthcare practitioners, and 2)to clarify the areas needing to be improved in community palliative care, raised in the conference. A total of 336 multidisciplinary practitioners from 4 areas of Japan participated in the conference. Overall, more than 80% of the participants evaluated the conference as very useful or useful; more than half reported that the conference was very useful or useful to obtain a concrete solution for the obstacles and to utilize the lessons though the conference as a means to improve quality of care in their own community. The identified areas needing improvement are: 1)developing an interactive networking among healthcare practitioners and/or organizations in the community; 2)developing a system of high quality, easily-available specialized palliative care service; 3)improving the knowledge and perception of medical professionals concerning palliative care and home care; 4)developing a collaborative care system between hospitals and community healthcare practitioners and/or organizations; 5)developing a collaborative care system among community healthcare practitioners and/or organizations; 6)optimizing existing resources available in the community; 7)improving the perception of patients and the general public about palliative care, home care, and cancer; and 8)to reevaluate the regulations, laws, healthcare system, and financial or human resources at the social level.     

The verification of effectiveness of home medical care workshop for hospital nurses: the result was based on before/after questionnaire survey

Since 2006, the department of home nursing care at Tokyo Women's Medical University Hospital has held a half year long 6-courses home medical care workshop for our hospital nurses by inviting local medical and welfare specialists as their lecturers. The objective of the workshop was to gain a wider range of knowledge and understanding of hospital discharge support system and home medical care services. In order to evaluate the level of understanding and achievement obtained from the workshop, a questionnaire survey was conducted in 2010 asking the participants to fill out a self evaluation form before and after the course. In addition to that, a class evaluation form was handed out after each class to evaluate a level of understanding of each lecture. The result showed that all aspect of the evaluation levels went up(p<0. 05). Some of the free comments were summarized in the followings: 1 ) Positive results were obtained by working together, and we learned how to coordinate with the regional medical specialists through specific case studies. 2 ) It was a good opportunity for the nurses to receive a direct advice from facilitators(visiting nurses)on cases at hand. 3 ) The lectures' talks based on their experiences brought us a feeling of closeness in the regional home medical care. After the course was concluded, the following issues were raised by hospital ward nurses in the area of difficulties at the time of patient's discharge from the hospital: 1 ) The coordination between doctors and other medical specialists, 2 ) Handling of different requirements among the different family members, 3 ) Timing of patient discharge planning, and 4 ) Lack of knowledge in social resources and medical health insurance system. Hence, we would like to incorporate these survey findings.     

Key issues in death at home

After our facility was first opened, we provided terminal care for one patient with terminal stomach cancer. In this case palliative care, so important in terminal care, and care for the family was insufficient, and in the end we had to abandon the process assuring the kind of death the patient wished for at home. Learning from this experience, we have provided terminal care to about 150 patients based on each patient's outlook on life and view of life and death. These patients have included terminal cancer patients and patients informed of their cancer who chose to coexist with the cancer and live together with their families. At home, the words and facial expressions of the patients and their families are clear expressions of their humanity. At times, such, feelings are also directed frankly and unaffectedly toward us, the visiting nursing staff. When considering the early case in which we were unable to continue home care, we could see various problems: on the part of the medical staff including primary physician and nurses, the welfare service, the patient and family, and neighboring informal social resources. These included problems in informing the patient of his cancer and his remaining days. In home treatment of patients with terminal cancer, death at home assisted by a physician from the same medical facility is not emotionally all it might appear to be. Nurses, for example, do not provide religious comfort; therefore, they can not provide home hospice services. Or so it is said. However, in supporting community home care, there is an exchange between humans and the communication of genuine feelings; thus, the nurturing of warm care makes possible the kind of death the person wishes. In fact, we can not deny that that is the path we are taking. In the present report, we explore the issues that make home terminal care possible from the viewpoint of visiting nurses.     

Perceptions of terminally ill patients and family members regarding home and hospice as places of care at the end of life

To enable demand-based palliative care, it is important to know the perceptions of terminally ill patients and their family members regarding home and hospice as places of care at the end of life. Eight women and five men suffering from cancer and with a life expectancy of 3 months or less were interviewed. In each case one of the family members was also interviewed. Four patients spent their last phase of life at home, nine in a hospice. This paper provides further insight in the patient perspective in palliative care. The results reveal that a cohabiting partner seems an important prerequisite for terminally ill patients to stay at home. For spouses it is an obvious choice to facilitate the patients' stay at home, even when it becomes too demanding, something not discussed between spouse and patient. When sufficient care at home seems impossible and the negotiation between patients and family members results in the opinion that living at home is no longer an option, it is decided that the patient moves to a hospice. The choice for the specific setting of the patients' new residence seems to be random; one possibility is pointed out to them and seems appropriate.     

Cancer patients' distresses and inquiries: proposal of four-level classification based on consultation service and questionnaire survey

The present study was undertaken to understand the realities of cancer patients' and their family members' distresses and inquiries, including medical/physical, emotional/spiritual and social/economic problems, from scientific viewpoints. The initial step of the study was to develop the classification category for these distresses and inquiries. The category was proposed based on information from two different sources; one is the consultation records of the Patient Support and Inquiry Division, Shizuoka Cancer Center and the other is the database of the Questionnaire Survey, which consisted of more than 25,000 distresses from 7885 people who faced up to cancer. The four-level classification category was constructed from 16 primary categories, 35 secondary categories, 129 tertiary categories and 619 quaternary categories. The classification category made it possible to analyze the distresses of cancer patients and their family members. The present study demonstrated the differences between the patterns of distresses for the consultation service and the questionnaire survey. In consultation centers belonging to hospitals, such as the Patient Support and Inquiry Division in the Shizuoka Cancer Center, patients wanted to consult on distresses and inquiries related to medical care. In contrast, they rarely consulted on emotional/spiritual or social problems. Based on the present classification category, we are developing a database called 'Questions and Answers for Cancer Patients' Distresses'. The database enables medical staff to learn what distresses patients and their family members, and to implement high-quality consultation in cancer clinics.     

The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients' illness characteristics on depression and anxiety

A diagnosis of cancer is a very stressful event for the patients and their families. Patients, partners and other family members can suffer from clinical levels of depression and severe levels of anxiety and stress reactions. The similarity in levels of distress between patients and partners and patients and offspring suggests that there are common factors that impact on families' distress levels. The current study examined levels of depression and anxiety in newly diagnosed adult patients (n = 48) and their adult relatives (n = 99). Family functioning and patients' illness characteristics were identified as factors that might impact on families' depression and anxiety. Results from multilevel models indicated that family functioning was important. Families that were able to act openly, express feelings directly, and solve problems effectively had lower levels of depression. Direct communication of information within the family was associated with lower levels of anxiety. Aside from differences anxiety due to cancer type, patients' illness characteristics appear to be risk factors in patients' but not relatives' depression and anxiety. The results from the current study suggest that researchers and clinicians need to be family-focused as cancer affects the whole family, not just the patient.     

Method for home parenteral nutrition (HPN) at Daikou Sunadabashi Clinic

In recent years many patients who have become heavily dependent on medical care live at home. At Daikou Sunadabashi Clinic, we take care of many patients who have malignant tumors, at their homes. They need many medical treatments, so HPN has become a common practice. Here we show our circumstances of HPN. And we introduce our method for HPN. Our method is as follows: 1. Before the patient is discharged from the hospital, we go to the hospital and confirm the patient's condition. 2. We assess the level of training regarding HPN, and select the best way (instruments, circuits, administration) in consideration of the patients' or their families ADL. 3. We select a visiting nurse station 4. and train the visiting nurse in HPN using our manuals. 5. We use an HPN pump. 6. We select a simple way of infusion and adjust it to the patient's condition. In this way, we use HPN easily at home with the aid of a visiting nurse, visiting pharmacist, families, and us.     

Home medical care network in the community supporting hospital--nursing consultant acting for community coordination

Tama Nambu-Chiiki Hospital is a secondary medical institution providing the acute short-term care centered on cancer treatment and emergency medical service, which few other medical institutions in the region provide. The hospital, which has no system to directly support home medical care by house visit or visiting nurses, needs to coordinate home medical care with other community medical institutions. 2 nurses serve as the Nursing Consultants who provide consultation services over the issues related to home medical care and other issues face to face or by phone and coordinate home medical care with other community medical institutions. Medical coordination based on trust and understanding of home medical care by hospital staffs are essential for the smooth transfer to home medical care. Activities of the hospital are studied to cope with the changes in healthcare trend.     

Misperceptions of medical understanding in low-literacy patients: implications for cancer prevention.

BACKGROUND: Patients with limited literacy skills often have difficulty understanding medical information, are less likely to undergo cancer screening, and present with cancer at later stages than patients with better literacy skills. Since primary care physicians are responsible for performing or initiating the majority of cancer screening in the United States, they need to be able to not only identify patients who might not understand medical information but also communicate effectively with them about cancer prevention and screening. METHODS: To determine whether family medicine residents could identify patients who might have difficulty understanding medical information because of limited literacy, we measured the literacy skills of patients in a university-based family medicine clinic using the short form of the Test of Functional Health Literacy in Adults (S-TOFHLA). After the patients completed their office visits with a physician, we asked family medicine residents to rate the patients' ability to understand medical information. RESULTS: Among 140 patients who met with 18 family medicine resident physicians, 24% had limited literacy skills based on testing with the S-TOFHLA. Residents identified only about half of these patients as having poor or below average understanding of medical information. CONCLUSIONS: IN many cases, family medicine residents are unable to identify patients who, based on assessment of their literacy skills, are likely to have difficulty understanding medical information. When working with residents, medical educators should promote the habit of taking poor literacy into account when communicating with patients.