Specialized Home Care Research Articles

Factors Associated with Congruence Between Preferred and Actual Place of Death

Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home care visits may increase home deaths, but factors associated with congruence have not been systematically reviewed. This study sought to review the extent of congruence reported in the literature and examine factors that may influence congruence. In July 2009, a comprehensive literature search was performed using MEDLINE, PsychInfo, CINAHL, and Web of Science. Reference lists, related articles, and the past five years of six palliative care journals were also searched. Overall congruence rates (percentage of met preferences for all locations of death) were calculated for each study using reported data to allow cross-study comparison. Eighteen articles described 30%-91% congruence. Eight specialized home care studies reported 59%-91% congruence. A physician-led home care program reported 91% congruence. Of the 10 studies without specialized home care for all patients, seven reported 56%-71% congruence and most reported unique care programs. Of the remaining three studies without specialized home care for all patients, two reported 43%-46% congruence among hospital inpatients, and one elicited patient preference "if everything were possible," with 30% congruence. Physician support, hospice enrollment, and family support improved congruence in multiple studies. Research in this important area must consider potential sources of bias, the method of eliciting patient preference, and the absence of a single ideal place of death.

The Effect of Palliative Care in Home Care and Hospital on Quality of Life

The aims of this study were to assess in two different settings and at two different points of time the quality of life of patients with cancer who are terminally ill, to get an insight into the changes that occur in the course of time, and to evaluate the differences between the groups. A stratified random sample of 121 patients was extracted from a total of 250 cancer patients who were being treated in the hospital or home care services. All patients have end-stage cancer and approached the unit or the specialized home care services for pain relief and management of other cancer-related symptoms. A longitudinal observational study was designed to assess the effect of palliative care during the first week of admittance to a hospital and to home care. In the hospital patients group, patients showed a statistically significant and clinically relevant decrease (improvement) in nausea/vomiting, pain, and dyspnea (effect size, >0.20). In the home care group, we did not find any statistically significant changes in sleep disturbance, financial impact, and control parameter Karnofsky index. However, statistically significant and clinically relevant improvements were detected in the domains cognitive function, physical function, new role function, emotional function, social function, fatigue, nausea/vomiting, pain, dyspnea, appetite loss, constipation, diarrhea, and new global health. The Europian Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) can be used as a brief, simple instrument that is easy to integrate into routine practice and useful for a clinical audit of palliative care in different settings as an outcome measurement and for assessing the quality of life of advanced-stage cancer patients.

A Specific Home Care Program Improves the Survival of Patients With Chronic Obstructive Pulmonary Disease Receiving Long Term Oxygen Therapy

Rizzi M, Grassi M, Pecis M, Andreoli A, Taurino AE, Sergi M, Fanfulla F. A specific home care program improves the survival of patients with chronic obstructive pulmonary disease receiving long term oxygen therapy. Objectives To analyze the influence of a home care (HC) program on outcomes of patients with chronic obstructive pulmonary disease (COPD) receiving long-term oxygen therapy (LTOT) in comparison with outcomes of patients receiving standard care (SC). Design A 10-year follow-up study with 2 parallel cohorts (HC vs SC). Setting University hospital. Participants One hundred and eight patients in the HC program and 109 patients managed conventionally. Interventions The HC program consisted of outpatient clinical and functional evaluations every 6 months, and domiciliary assessments by a specific team including a pneumologist, a respiratory nurse, and a rehabilitation therapist every 2 to 3 months or more, as needed. Main Outcome Measures Mortality; exacerbation, hospital and intensive care unit admission rate. Results One hundred and eight patients entered the HC program and 109 patients were managed conventionally. The 2 groups of patients did not differ for age, sex, body mass index, COPD severity or comorbid conditions. The overall mortality during the follow-up was 63% and the median survival was 96±38 months. The survival curves for HC and SC patients were statistically significantly different (log-rank, −16.04; P=.0001). In the Cox proportional hazards model, inclusion in the HC program was associated with an increased survival rate, whereas comorbid conditions and requirement of mechanical ventilation during the follow-up were associated with a decreased survival rate. During the entire follow-up, HC patients had a lower number of exacerbations/year than SC patients. Conclusions A disease-oriented HC program is effective in reducing mortality and hospital admissions in COPD patients requiring LTOT.

Caries risk reduction in patients attending a caries management clinic

A Caries Management Clinic was established for patients at high risk of caries aiming to reduce caries incidence to close to zero. That is, to prevent new lesions on existing sound surfaces, along the susceptible restoration margins, and to remineralize existing cavitated and non-cavitated lesions. Twenty patients attended the clinic every two weeks from April to December 2005. The Caries Management System is a ten-step non-invasive strategy to arrest and remineralize early lesions and includes consideration of the patient at risk, the status of each individual lesion, patient management, clinical management, and monitoring. After six months, there was a 42 per cent increase in gingival sites having Gingival Index scores of zero, and a 21 per cent decrease in sites having Gingival Index scores of 2 compared to baseline (chi(2 )=( )137.67, 4 df, p = 0.00001). Ready to change (RTC) patients had significantly fewer sites scored GI <or= 2 compared to not-RTC patients (p = 0.01). Compared with the not-RTC patients, RTC patients were more than twice as likely to have fewer sites scored GI </= 2 (RR = 2.43, 95% CI (1.24, 4.71), p = 0.01). A total of 100 out of 146 smooth non-cavitated carious surfaces at baseline have remineralized after six months, 99 per cent of sound surfaces remained sound, and 23 new lesions were observed in six of the 20 patients (alpha(2 )=( )292, 7 df, p = 0.00001). About half of proximal surfaces showing bitewing scores of grade 1 or 2 had regressed (alpha(2 )=( )86.66, 56 df, p = 0.0001) and 95 per cent of proximal sound surfaces at baseline, as diagnosed via bitewing radiographs, remained sound. This audit revealed that the implementation of the non-invasive approach to caries management which combined intensive coaching in oral hygiene maintenance, special home care and intensive monitoring in a clinic for high-risk patients was able to reduce gingival inflammation and maintain low plaque levels, at least within the scope of this short-term review.

Atención especializada domiciliaria de patologías médicas desde un hospital universitario terciario urbano. Coordinación entre los servicios médicos del hospital y la Atención Primaria de salud del territorio

The experience of an urban Tertiary University Hospital in the design and implementation of Hospital at Home Program (HaHP) integrated in a Department of Internal Medicine and highly coordinated with Medical Services of the Hospital and the Primary Health Care, that contemplates the like main objectives of the promotion of specialized home care medical diseases and the improvement of the coordination with the primary health care. Systematic collection in all the patients admitted between April 2006 and March 2007 in the HaHP of the following variables: age, gender, service of origin, main diagnosis, Barthel and Charlson index, number of visits per day to doctors and nurses, destination on discharge and medical team. The descriptive statistical analysis was made in April 2007. The results are presented globally and differentiated by teams (internal medicine, respiratory and nutritional support teams). 506 admissions in 390 patients with a mean age of 66.5 (18) years, 53% being women. The Charlson index was 2 (2.2) and the Barthel index 63.5 (40,4). Average stay was 7.9 (8.2) days. The main reasons for admission were the infections and domiciliary intravenous antibiotic therapy in 153 (30.5%) cases, followed by patients with chronic obstructive pulmonary disease or cardiac failure in 107 (21%) cases, and home enteral and parenteral nutrition in 102 (20%) cases. Two hundred (39.5) patients were subsequently controlled by their primary care team after discharger, 241 (47.5) patients were followed-up in the hospital consultations, and 45 (9%) of the patients had to return directly to the hospital. The creation of a HaHP, for medical diseases, in internal medicine department that is highly coordinated with medical services of the hospital, especially with emergency, respiratory, and nutritional support teams, and with the primary health care, facilitates specialized home care of medical diseases and improves coordination with the primary health care.

Une meilleure organisation des soins pourrait diminuer le nombre des patients atteints de cancer adressés aux urgences: Analyse prospective de 123 patients

The objective of this prospective study was to analyze the profile of cancer patients admitted to an emergency department.The study included all cancer patients admitted to the emergency department of our tertiary care hospital during a 47-day period in 2004 and analyzed their demographic and medical data.Patients were predominantly male (65%) with an average age of 62 years: 90% already knew their diagnosis. Most presented with immunodepression and severe deterioration of their general condition, in an advanced palliative stage (67%). They were referred mainly by their general practitioners (55%) and came from home (92%). In all, 81.3% were hospitalized. Follow-up at 3 months found 68.5% had died.Reasons for admissions were varied. The primary reasons were the unavailability of beds in specialized cancer units and limited home care due to poor hospital-community coordination and to a lack of social and psychological assistance. Management through the emergency care system proved satisfactory but earlier preadmission care could be improved by developing supportive care and providing education for general practitioners about pain control and palliative care.

Hospitalización a domicilio especializada en enfermedades infecciosas. Experiencia de 1995 a 2002

In 1995 a specialized home care service for infectious diseases was created in our institution. The aim was to improve the quality of life of patients with prolonged parenteral antimicrobial therapy requirements, reduce the length of hospital stay, and improve the care received after discharge by clinical and analytical surveillance. This study reviews the experience of this service from 1995 to 2002 using prospectively recorded data. An analysis was performed of the number of patients included in the home care program per year, number of patients with HIV infection, infectious disease diagnosed, department referring the patient, antimicrobial treatment administered, destination at discharge, and reason for hospital re-admission. The number of patients included each year from 1995 to 2002 was 52, 55, 77, 232, 213, 321, 280 and 219, respectively. The percentage of HIV-infected patients decreased from 90% in 1995 to 23% in 2002. The main reason for referral to the program changed from substitution of day-care hospital treatment to early discharge from hospitalization. Whereas CMV infection was the most frequent infection treated during the 1995-1998 period, bacterial infections predominated in the following years. In 148 episodes, self-administration or a portable infusion pump was used for drug administration. Self-administration was associated with a greater risk of complications (24% vs. 12%, OR 2.3, 95% CI 1.5-3.6, P < 0.001) and catheter-related sepsis (4% vs. 0%, OR 12.9, 95% CI 10.9-15.3, P < 0.001). HIV-infected patients were re-hospitalized due to complications unrelated to the home care service more frequently than HIV-uninfected patients. The percentage of HIV-infected patients included in the infectious disease home care service has progressively decreased since 1996, a fact likely to be related to the introduction of highly active antiretroviral therapy and better control of opportunistic infections. Currently, bacterial infections are the most frequent infections treated in the service. Early hospital discharge is now the main reason for referral to the home program.

An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods

Standard home care support for people with dementia has been criticised in statutory inspection reports, and may lead to unnecessary crises, hospital or care home admissions. To establish whether a specialist multiagency home care service for older people with dementia delivered better quality care than standard services, and how any improvements were achieved. Qualitative study, using semi-structured interviews, focus groups and small group interviews. Two demographically similar areas in Nottingham, one served by a specialist home care team, the other by standard services. Twenty-seven service users, 18 family carers, 17 home care workers, 20 health/social care professionals, across both services. The specialist service demonstrated greater flexibility and responsiveness to the particular needs and circumstances of service users and family carers, who were encouraged to participate in routine decision-making and activities. By sharing responsibilities, the specialist service helped reduce carer stress and prevent crises. These outcomes depended on the configuration of the service, including multidisciplinary health and social services input, careworker autonomy and independence, continuous reassessment of clients' circumstances and preferences and the capacity to develop long-term relationships, through careworker continuity. The standard service, which used a task-orientated approach, lacked these characteristics. This study provides evidence of the benefits of a specialist multiagency home support service over standard home care, in the opinion of service users, carers and careworkers, and defines the operational model that achieves this. Findings confirm best practice recommendations, based on models of dementia care which emphasise respect for 'personhood'.

Botucatu, Brazil: A Regional Community Palliative Care Model

The Pain Management and Palliative Care Service in the Department of Anesthesia at Botucatu Medical School, UNESP is a pioneer in Brazil. Based on an interdisciplinary team that provides specialized inpatient, ambulatory outpatient, and home care to patients in Botucatu and the surrounding region, the service is also able to provide extensive educational opportunities in pain management and palliative care for medical students, anesthesia residents, practicing anesthetists, and nurses.

Improving the Care of Terminally Ill Cancer Patients and Their Families

Cancer patients develop a number of devastating physical and psychosocial symptoms before death and their families suffer severe distress. There is consensus about the need to improve medical and nonmedical services, but in most cases patients and families receive limited and late access to care. In this issue of the Journal of Clinical Oncology, Aabom et al report that Danish cancer patients receiving the “terminal declaration” had a significant and impressive reduction in admission and hospital death rates. This declaration requires a prognosis of less than 6 months’ survival and it gives rights to full reimbursement of drugs, home care equipment, and payment to informal caregivers. This excellent study was not able to determine if the terminal declaration resulted in improved physical or psychosocial symptom control in the patients or decreased family distress. It is also not clear which aspects of this declaration are most effective. One possibility is that physicians who use the terminal declaration communicate more openly with their patients regarding prognosis and end-of-life care planning, including appropriate palliative care access. Another possibility is that the increased financial benefits, such as improved medication coverage and payment for informal caregivers, allow patients to remain at home. The support for informal caregivers is particularly relevant because families conduct the overwhelming majority of community-based palliative care. This study provides strong justification for additional research to confirm if this simple intervention is capable of reducing hospital deaths and patient and family distress. Previous research has shown that simple interventions such as the provision of survival and symptom control information by a nurse did not result in a significant change in patterns of care at the end of life. More complex interventions such as the establishment of regional palliative care programs including specialist home care and palliative care units were able to increase palliative care access to more than 80% of cancer patients, decrease mortality, and reduce overall cost of care. These studies suggest that changing the trajectory of illness and access to palliative care in North America may require more complex interventions than those included in the terminal declaration. It is possible that this benefit might be particularly effective among Danish cancer patients who already have access to completely free and integrated hospital, outpatient, home care, and palliative care services. An important aspect of the Danish terminal declaration is that it promotes communication and provides extra benefits that are fully integrated with the existing medical services. In the United States, patients and families need to opt out of acute care services to receive the hospice medical benefit; this frequently limits their access to many potentially useful interventions including bisphosphonates, blood products, radiation therapy, targeted therapies, or participation in phase I clinical trials. These results suggest that improving community support for advanced cancer patients before they are referred to hospice might be a way of preventing admissions and hospital deaths. A disappointing finding of this study is that the terminal declaration was used in only 34% of cancer patients for a median of 52 days before death. Unfortunately, physicians frequently are reluctant to address end-of-life care issues and they have tend to overestimate survival. The authors correctly point out that this median of 52 days is more than double the survival from hospice referral to death in the United States, and is similar to the 1.9-month median survival after referral to palliative care programs in cancer centers. It is likely that physicians will use palliative care referrals of the terminal declaration earlier compared with hospice because these benefits are complementary to, rather than alternative to, available services. The finding of a lower probability of terminal declaration among patients with hematologic malignancies is consistent with the increased hospital mortality and later referral to palliative care previously described for these patients. This JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 23 NUMBER 30 OCTOBER 2

Home care service for people with dementia: Case study for the Housing Learning and Improvement Network

This case study gives an example of a pioneering, specialist home care service for people with dementia living in their own homes in the Borough of Poole in Dorset.

Home Care Management of Intestinal Transplant Recipients

During the past 14 years, significant advances have been made in the field of intestinal transplantation. Patients' survival rates have increased, influencing referral patterns, and there has been a growing trend toward shortened hospitalizations with earlier discharge. Home care has also evolved during this same period, with development of the resources, training, and processes required for in-home management of patients with multiple complex needs. Together these trends have led to the ability to provide care and services to higher acuity patients in the outpatient and home setting after intestinal transplantation. In this article, we review the infusion management of intestinal transplant recipients before and after they go home and the rationale for the need for specialized home care services.

Home care management of intestinal transplant recipients

During the past 14 years, significant advances have been made in the field of intestinal transplantation. Patients' survival rates have increased, influencing referral patterns, and there has been a growing trend toward shortened hospitalizations with earlier discharge. Home care has also evolved during this same period, with development of the resources, training, and processes required for in-home management of patients with multiple complex needs. Together these trends have led to the ability to provide care and services to higher acuity patients in the outpatient and home setting after intestinal transplantation. In this article, we review the infusion management of intestinal transplant recipients before and after they go home and the rationale for the need for specialized home care services.

Environmental correlates to behavioral health outcomes in Alzheimer's special care units.

We systematically measured the associations between environmental design features of nursing home special care units and the incidence of aggression, agitation, social withdrawal, depression, and psychotic problems among persons living there who have Alzheimer's disease or a related disorder. We developed and tested a model of critical health-related environmental design features in settings for people with Alzheimer's disease. We used hierarchical linear modeling statistical techniques to assess associations between seven environmental design features and behavioral health measures for 427 residents in 15 special care units. Behavioral health measures included the Cohen-Mansfield physical agitation, verbal agitation, and aggressive behavior scales, the Multidimensional Observation Scale for Elderly Subjects depression and social withdrawal scales, and BEHAVE-AD (psychotic symptom list) misidentification and paranoid delusions scales. Statistical controls were included for the influence of, among others, cognitive status, need for assistance with activities of daily living, prescription drug use, amount of Alzheimer's staff training, and staff-to-resident ratio. Although hierarchical linear modeling minimizes the risk of Type II-false positive-error, this exploratory study also pays special attention to avoiding Type I error-the failure to recognize possible relationships between behavioral health characteristics and independent variables. We found associations between each behavioral health measure and particular environmental design features, as well as between behavioral health measures and both resident and nonenvironmental facility variables. This research demonstrates the potential that environment has for contributing to the improvement of Alzheimer's symptoms. A balanced combination of pharmacologic, behavioral, and environmental approaches is likely to be most effective in improving the health, behavior, and quality of life of people with Alzheimer's disease.

Home parenteral nutrition in patients using specialized home care providers without complications has a higher quality of life than those using a general home care provider

Home parenteral nutrition in patients using specialized home care providers without complications has a higher quality of life than those using a general home care provider

Compromised Infant Pathway

Early discharge of very low birth weight infants has been shown to have positive outcomes when a specialized home care team is involved. The development of the compromised infant pathway started from a need for earlier discharges from the neonatal intensive care unit at Johns Hopkins Hospital. During a state survey in 1997, a suggestion was offered to create a more consistent care-planning process for these early discharge infants. Revisions were made during the following year to be more in compliance with state and federal standards. Nursing needs are determined at time of referral, as well as therapy needs. Infants that need rehabilitation only are still admitted under the compromised infant pathway. The case study illustrated such an infant, who required ongoing therapy services with intermittent skilled nursing. Since the implementation of the pathway, the referral sources are satisfied the infants are being smoothly transitioned to outpatient services.

Risk adjusting outcome measures for post-acute care.

This article examines whether different risk adjusters are needed for home care outcome measures for post-acute care clients. Multiple risk adjusters that met clinical and policy criteria were tested using multiple logistic regression on a sample of 4403 post-acute home care clients from Michigan. Two of the 6 outcome measures had substantially different risk adjusters for the post-acute care population versus the general population. Care should be taken to select outcome measures and risk adjusters for special home care populations.

In older patients with late stage cancer, specialised home care by nurses improved survival after surgery

(2000) J Am Geriatr Soc 48, 1707. McCorkle R, Strumpf NE, Nuamah IF, et al. . A specialized home care intervention improves survival among older post-surgical cancer patients. . Dec;...

Brief In-Service Training in Music Therapy for Activity Aides

This study analyzed the effects of a brief in-service training workshop designed to teach activity aides how to use music therapy techniques. Sixteen persons with dementia, living in a nursing home special care unit, served as the research participants. Results showed that training conducted with activity aides significantly increased resident engagement with rhythm instruments in both one-on-one interactions and in group activity situations. Similar increases were observed in residents with a range of cognitive impairments. These results suggest that this intervention offers a potentially promising approach that indigenous staff can use to engage residents with dementia in purposeful activities.

Importance of home care personally to individuals with advanced cancer and their families

The objective of the study is to evaluate the importance of home care for patients with advanced tumor diseases and for their families. The analysis was based on structured interviews with relatives of patients with terminal tumor diseases. They had participated in the home care of 50 consecutively treated patients 2 years previously. The value of home care was evaluated on the basis of the personal experience of those concerned. The answers were largely consistent. The holistic concept of palliative therapy could be implemented by a specialized home care team at a high quality level. Under the favorable conditions of the familiar surroundings, an atmosphere of trust developed as a result of the cooperation with the family members, people close to the patients and with family doctors. It contributed to a relatively high quality of life and to alleviate the emotional stress. Most of those involved were able to accept the hand of fate. On this basis, the terminal phase could be satisfactorily arranged and preparations made for a good quality of death. During the home care, appreciation of the value of the family increased. The intensified family relations were mostly sustained after the patient's death. The results document the great personal importance of home care for patients, their caretakers and families. The positive experience and the awareness of having contributed substantially to coping with the life crisis made it easier for the bereaved to grieve and to rearrange their life.