Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey

Objectives

To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings.

Design, settings and participants

A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%).

Results

Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings.

Conclusions

This study demonstrated the importance of both the hospital and community nurses’ role in increasing the patients’ chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients’ clinical status, and caregivers’ ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control.     

Caregiving for the terminally ill: at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.     

A cluster randomized trial of a primary palliative care intervention (CONNECT) for patients with advanced cancer: Protocol and key design considerations

BackgroundThe addition of specialty palliative care to standard oncology care improves outcomes for patients with advanced cancer and their caregivers, but many lack access to specialty care services. Primary palliative care—meaning basic palliative care services provided by clinicians who are not palliative care specialists—is an alternative approach that has not been rigorously evaluated.MethodsA cluster randomized, controlled trial of the CONNECT (Care management by Oncology Nurses to address supportive care needs) intervention, an oncology nurse-led care management approach to providing primary palliative care for patients with advanced cancer and their family caregivers, is currently underway at 16 oncology practices in Western Pennsylvania. Existing oncology nurses are trained to provide symptom management and emotional support, engage patients and families in advance care planning, and coordinate appropriate care using evidence-based care management strategies. The trial will assess the impact of CONNECT versus standard oncology care on patient quality of life (primary outcome), symptom burden, and mood; caregiver burden and mood; and healthcare resource use.DiscussionThis trial addresses the need for more accessible models of palliative care by evaluating an intervention led by oncology nurses that can be widely disseminated in community oncology settings. The design confronts potential biases in palliative care research by randomizing at the practice level to avoid contamination, enrolling patients prior to informing them of group allocation, and conducting blinded outcome assessments. By collecting patient, caregiver, and healthcare utilization outcomes, the trial will enable understanding of the full range of a primary palliative care intervention's impact.     

Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals

Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.     

Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.     

Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care

BACKGROUND: Family caregivers are often responsible for providing significant support to relatives who require palliative care at home. However, evidence suggests that family caregivers have limited information, resources or support to prepare them for such a role. Furthermore, family caregiving can be associated with negative physical, financial and psychosocial outcomes. PURPOSE: This project sought to examine the utility of a group family caregiver psycho-educational programme focused on preparing primary family caregivers for the role of supporting a relative with advanced cancer at home. METHOD: The education programme consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria (Australia). Participating caregivers were required to complete a set of self-report questionnaires measuring caregiver competence, preparedness, optimism, rewards, social support, burden and information needs, at three time points: commencement of the programme (T1), upon completion (T2) and 2 weeks later (T3). Caregivers were also asked to report on the relevance, acceptability and content of the programme, as well as any barriers to access. RESULTS: Sixteen education programmes were conducted, with 74 caregivers attending the first session. Forty-four caregivers completed all three data collection sets. Following the intervention, a significant positive effect was found for the following outcomes: preparedness for the caring role, caregiving competence, caregiving rewards and having information needs met from T1 to T2. These improvements were maintained at follow-up (T3). Feedback on the individual sessions and entire programme was favourable and the overwhelming majority of participants reported that the programme had a positive impact on their lives. CONCLUSIONS: This study demonstrated that a group education programme to prepare family caregivers for the role of supporting a dying relative at home was accessible, applicable and effective.     

Hospice patient and caregiver congruence in reporting patients' symptom intensity

As healthcare increasingly moves out of hospitals, the care of patients with cancer is provided in the community with the help of family caregivers. In many cases, nurses depend on family caregivers to provide assessment data about patients. This makes the accuracy and dependability of the data given by caregivers particularly important. However, it is not clear whether caregivers can accurately and dependably report such subjective data as symptom intensity. The purpose of this project was to evaluate the ability of the primary caregiver to report the symptom intensity of hospice patients with cancer. The sample consisted of 264 newly admitted adult patients with advanced cancer in hospice home care and their primary caregivers. These subjects were part of a large National Institutes of Health (NIH)-funded randomized clinical trial focused on symptom management and quality of life. The patients were alert and oriented. Among the questionnaires completed by both patients and caregivers on admission were numeric rating scales for pain and dyspnea and the Constipation Assessment Scale. All of these scales were designed to describe the patient's symptom intensity. The patient sample was predominantly white (83%) and male (57%), with a mean age of 71.6 years. The caregiver sample was predominantly white (85%) and female (78%), with a mean age of 62 years. The results indicated that caregivers significantly overestimated symptom intensity for all three symptoms (P =.000). Furthermore, the limited variance accounted for by the two sets of scores for each of the symptoms (R2 =.16-.26) indicated much more error in the scores than agreement between patient and caregiver. It appears that family caregivers cannot reliably report patient symptom intensity. Healthcare providers need to train family caregivers in conducting systematic assessments instead of assuming that they understand patient symptoms.     

Family caregiving in cancer pain management

The experience of cancer pain is known to greatly affect family caregivers as well as patients. There are many demands placed on caregivers of cancer patients with pain at home as a result of the shifting of care from the acute setting to the home. These complex demands significantly affect caregiver quality of life. The purpose of this study was to describe the experience of pain management from the perspective of family caregivers of patients with cancer amidst the current healthcare environment. This quasi-experimental study involved 231 family caregivers of patients with cancer pain receiving home care. Family caregivers were assessed in conjunction with a pain education program that provided patient and. family education regarding pain assessment, drug and nondrug interventions. Assessment measures used were the Quality of Life (QOL)-Family Caregiver Tool, Knowledge and Attitudes about Pain (K&A) Tool, and Caregiver Finances Tool. Study findings reveal disruption to family caregiver quality of life in the areas of physical, psychological, social, and spiritual well-being. There is also a continued need for education regarding cancer pain management. Comparison between patients and family caregivers demonstrates that pain impacts both the patient experiencing it and their caregivers.     

Maintaining distance from a necessary intrusion: A postcolonial perspective on dying at home for Chinese immigrants in Toronto,Canada

PurposeThe purpose of this study was to describe and examine how meanings of home condition negotiations of care for Chinese immigrants with advanced cancer receiving palliative home care in Toronto, Canada.MethodThis focused ethnographic study drew on the tenets of postcolonial theory to examine the social and material circumstances associated with dying at home for Chinese immigrants. Eleven key informants were recruited, in addition to 4 cases comprised of a Chinese immigrant care recipient, primary family caregiver, and home visiting nurse. Individual, open-ended interviews were conducted with each participant, along with observations of home visits.ResultsPalliative care was not viewed strictly as an intrusion that was thrust upon the home without permission or invitation, but an insertion into the routines of the home that was necessary because care recipients recognized the need for palliative care providers to help navigate the system and negotiate dying at home. Consequently, care recipients and family caregivers also sought to minimize the intrusions of palliative care by preserving everyday routines and engaging with family and friends.ConclusionsAlthough the study was focused on Chinese immigrants, the findings resonate with and speak more broadly to the contextual, systemic, social, and material circumstances associated with dying at home for immigrants with advanced cancer. Nurses providing palliative home care to immigrants may begin to critically examine assumptions of “cultural” beliefs about cancer and end-of-life care and look beyond identifying ethno-specific practices, but come to recognize how nurses are implicated in a culture of palliative care.     

Family caregivers and palliative care: current status and agenda for the future

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade.     

Living and coping with Parkinson's disease: perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n?=?17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services.     

Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home

Title. Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home Aim. This paper is a report of a study conducted to (1) compare means of the single items and the dimensions of the Caregiver Reaction Assessment among caregivers of frail older people and caregivers of cancer patients in the palliative phase; (2) examine gender differences for the scoring parameters in the Caregiver Reaction Assessment within each group and (3) examine the demographic variables’ association with the caregiver groups’ scores for the dimensions of the Caregiver Reaction Assessment. Background. Limited research has focused on the caregiver situation in the home‐care setting among primary caregivers of frail older people, and caregivers of patients with cancer in the palliative phase. Methods. A convenience sample of 224 caregivers of frail older people, and 85 caregivers of patients with cancer in the palliative phase was recruited between 2002 and 2005. We used the Caregiver Reaction Assessment to collect the data. Results. The mean scores for the Caregiver Reaction Assessment dimensions showed statistically significant differences between the two groups of caregivers for the factors self‐esteem, family support, finances and health. For caregivers of frail older people, we found statistically significant associations between several demographic variables and the Caregiver Reaction Assessment dimensions. For caregivers of patients with cancer in the palliative phase, age was the only demographic variable that was statistically significantly associated with the dimensions. Conclusion. Healthcare personnel should pay attention to how relatives experience their caregiver situation, and the Caregiver Reaction Assessment could be a valuable tool for gathering systematic data on this.     

Variations in and factors influencing family members' decisions for palliative home care

The purpose of this paper is to describe the variations in and factors influencing family members' decisions to provide home-based palliative care. Findings were part of a larger ethnographic study examining the social context of home-based palliative caregiving. Data from participant observations and in-depth interviews with family members (n=13) providing care to a palliative patient at home, interviews with bereaved family members (n=47) and interviews with health care providers (n=25) were subjected to constant comparative analysis. Findings indicate decisions were characterized by three types. Some caregivers made uninformed decisions, giving little consideration to the implications of their decisions. Others made indifferent decisions, whereby they reluctantly agreed to provide care at home, and still others negotiated decisions for home care with the dying person. Decisions were influenced by three factors: fulfilling a promise to the patient to be cared for at home, desiring to maintain a 'normal family life' and having previous negative encounters with institutional care. Findings suggest interventions are needed to better prepare caregivers for their role, enhance caregivers' choice in the decision-making process, improve care for the dying in hospital, and consider the development of alternate options for care.     

Preferences for location of death of seriously ill hospitalized patients: perspectives from Canadian patients and their family caregivers

Previous studies involving palliative patients suggest a preference for dying at home. The purpose of this paper is to examine, prospectively, patient and family caregiver preferences for, and congruence with, location of death for hospitalized patients with cancer and end-stage medical conditions. Questionnaires were administered to 440 eligible in-patients and 160 family caregivers in five hospitals across Canada. This paper reports results of 138 patient/family caregiver dyads who answered a question about preference for location of death. The results suggest that only half of all patients and family caregivers report a preference for a home death. Furthermore, half of the patient/family caregiver dyads disagree on preferred location of death. If one of the primary goals of end of life care is to enhance the quality of life of dying patients and their family caregivers, policies directed towards ensuring that patients die in their location of choice ought to be a priority and resources should be allocated to promote the development of excellent care, not only in the home, but also within our institutional settings.     

Caregiver care

In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life.     

Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery

There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.     

Identifying attitudinal barriers to family management of cancer pain in palliative care in Taiwan

The purpose of this study was threefold: (1) to examine attitudes held by Taiwanese family caregivers of hospice inpatients with cancer that serve as barriers to cancer pain management; (2) to determine the relationship of attitudinal barriers to family caregiver hesitancy to report pain and to administer analgesics; and (3) to determine the relationship of attitudinal barriers to the adequacy of analgesics used by the patient. A total of 80 pairs of palliative care inpatients and their primary family caregivers participated in this study. Family caregivers completed the Barriers Questionnaire-Taiwan (BQT) form and a demographic questionnaire. The instruments completed by patients consisted of the Brief Pain Inventory-Chinese version and a demographic questionnaire. The data revealed that Taiwanese family caregivers of palliative care patients with advanced cancer had concerns about reporting pain and administering analgesics, particularly as they related to disease progression, side-effects and p.r.n. analgesics. Older and less-educated family caregivers scored significantly higher on the BQT than did their younger, more educated counterparts. Family caregivers' concerns measured by the BQT were related to family caregivers' reluctance to administer analgesics to their patients. Implications for a broader understanding of analgesics in the advancement of pain management in palliative care in Taiwan are discussed.