Delirium in advanced cancer: a psychoeducational intervention for family caregivers

Delirium, a global brain dysfunction, develops frequently in advanced cancer. It is a leading source of distress for family caregivers. Following recommendations from palliative care professionals and caregivers for terminally ill cancer patients, a psychoeducational intervention was implemented in a palliative care hospice to help family caregivers cope with delirium and, eventually, to contribute to early detection. Prior to receiving information on delirium, the majority of the family caregivers did not know what it was or that it could be treated. Few knew that patients in terminal care could become delirious. For caregivers, receiving the intervention increased their confidence they were making good decisions, and the majority felt that all family caregivers should be informed on the risk of delirium (p < 0.009). A specific intervention on delirium, tailored to the needs of the family caregivers, seems beneficial for caregivers and for patients.     

The experiences of Chinese family members of terminally ill patients - a qualitative study

Aim. To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. Background. Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. Design. A phenomenological study was conducted. Data were collected by semi‐structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. Results. Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. Conclusion. This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. Relevance to clinical practice. This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.     

Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan

There is a dearth of information in the literature about the concordance of preferences for end-of-life care between terminally ill patients and their family surrogates outside the Western countries. The purpose of this study was to examine the extent of concordance in preferences for end-of-life care goals and life-sustaining treatments between Taiwanese terminally ill cancer patients and their primary family caregivers. A total of 617 dyads of patients–family caregivers across 21 hospitals throughout Taiwan were surveyed. Overall agreements on the goals for end-of-life care and preferences for initiating life-sustaining treatments ranged from 62.4% to 96.9% (average: 71.0%). Kappa values for the extent of concordance ranged from 0.13 to 0.46 (average: 0.29), indicating poor to moderate consistency in personal preferences. Family caregivers had a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients' own stated preferences. In societies, such as in Asian countries, where physicians' respect for patient autonomy is frequently subordinate to the power of family, disagreements between a patient and family about end-of-life care may result in the patient's preferences being overridden at the end of life. To effect real change and to gain increased agreement on preferences for end-of-life care, an open dialogue between patients and their primary family caregivers should become standard.     

Experiencing Missing Contact With Professionals and Long Term Bereavement Outcome

ContextThe Danish health care system provides palliative care for terminally ill patients and their family caregivers. However, initiatives to support family caregivers are not systematically organized.ObjectivesWe aimed to examine the association between self-reported experience of missing contact to health care professionals involved in palliative care, and symptoms of grief and depression three years post-loss.MethodsWe conducted a prospective population-based survey of 3635 family caregivers to terminally ill patients. At six months follow-up, the caregivers reported whether they missed contact to the general practitioner, home care nurse, hospital staff, and/or palliative care team. Associations between missing contact and symptoms of prolonged grief (Prolonged-Grief-13) and depression (Beck Depression Inventory-II) three years after bereavement were analyzed with multivariable logistic regression analysis.ResultsWe found that an experience of missing contact with health care professionals six months after bereavement was significantly associated with symptoms indicative of prolonged grief disorder and depression after three years. The strongest association was found for missing contact with the general practitioner with an adjusted OR = 4.0 (95%CI: 1.9;8.3) for prolonged grief and an adjusted OR = 5.2 (95% CI: 3.4;7.9) for depression.ConclusionExperiencing missing contact with health care professionals shortly after bereavement was associated with adverse psychological reactions. Family caregivers may benefit from bereavement support to prevent further complications. A proactive approach with assessment of support needs and risk of complications early during the patient's illness trajectory may target support at those who needs it.     

End-of-life care for terminally ill participants in clinical research

Efforts to improve end-of-life care in the United States have paid little attention to the unique concerns of participants in clinical research who are terminally ill. In this paper we focus attention on and offer an analysis of how to meet the needs of these individuals. To address their concerns, we consider how to reconcile two important tasks: providing optimal end-of-life care and conducting clinical research. First, we examine the inherent tension between the goals of medicine and the goals of science. Second, we focus more specifically on the tensions between a good death and conducting clinical research in patients with a short life expectancy. We examine six domains that have been suggested for measuring a good death: physical symptoms; psychological and cognitive symptoms; economic and caregiving needs; social relationships; spiritual beliefs; hopes and expectations. For each of these domains we examine how the goals of clinical research may conflict or coincide with taking care of a patient with a terminal illness. Finally, we offer suggestions to address these tensions: (1) modify the informed consent discussion for terminally ill participants in research; (2) build a palliative care component into clinical trials; (3) attend to the needs of family caregivers of terminally ill research subjects; (4) arrange for continuity of care so that dropping out of a trial does not jeopardize medical care; (5) train clinical investigators in end-of-life care; (6) develop a counseling strategy for terminally ill participants in clinical research.     

The invisible dimension: abuse in palliative care families

The family as the unit of care underpins the philosophy and practice of palliative care. Through this model of service delivery, palliative care professionals attempt to provide holistic, quality end-of-life care to terminally ill patients and their families. The research on palliative care families to date, however, constructs the family unit as functional, articulate, cohesive and, thus, able to adapt to the impact of a terminal diagnosis, albeit with professional intervention if required. This notion of the family as monolithic and unproblematic masks the existence of family issues that have the potential to impact negatively on the care that patients receive, and thus constrain the palliative health professional in facilitating quality end-of-life care. Through a review of current literature, this paper identifies such an issue--that of abusive family relationships--which has been hitherto neglected in palliative care research. It is suggested that the issue of abusive family relationships needs to be identified and responded to at some level if the goal of providing holistic care and facilitating a "good death" for all terminally ill people receiving palliative care is to be achieved. The continued invisibility of this issue does not resolve the problem of abuse and could result in the implementation or continuation of practices that may in fact be damaging.     

Factors That Affect Quality of Dying and Death in Terminal Cancer Patients on Inpatient Palliative Care Units: Perspectives of Bereaved Family Caregivers

ContextThere is an increasing use of palliative care units (PCUs) for the treatment of terminally ill cancer patients. Thus, it is important to evaluate the care and quality of life of terminally ill cancer patients treated in PCUs so that improvements can be made. Limited research has investigated the quality of dying and death in PCUs.ObjectivesThe aim of this study was to identify factors associated with the quality of dying and death for terminally ill cancer patients in PCUs.MethodsData were collected from 570 bereaved family caregivers of terminally ill cancer patients. All patients were registered and died in one of the 40 inpatient PCUs designated by the Korean Ministry of Health and Welfare. We assessed the perceived timing of referral to a PCU; the quality of end-of-life cancer care with the Care Evaluation Scale; and the quality of dying and death with the Good Death Inventory.ResultsThe perception of appropriate timing of referral, use of a community-based PCU, and higher quality of cancer care as assessed by the Care Evaluation Scale were associated with good dying and death in all domains of the Good Death Inventory.ConclusionThe good quality of end-of-life care in a PCU improves the quality of dying in terminally ill cancer patients. The data have the potential to guide the development of interventions aimed at achieving a good quality of dying for patients with terminal cancer.     

Physical exercise and therapy in terminally ill cancer patients: a retrospective feasibility analysis

Purpose

Physical exercise (PE) and/or therapy (PT) shows beneficial effects in advanced cancer patients and is increasingly implemented in hospice and palliative care, although systematic data are rare. This retrospective study systematically evaluated the feasibility of PE/PT in terminally ill cancer patients and of different modalities in correspondence to socio-demographic and disease- and care-related aspects.

Methods

All consecutive terminally ill cancer patients treated in a palliative care inpatient ward during a 3.5-year period were included. The modalities were chosen according to the therapists' and patients' appraisal of current performance status and symptoms.

Results

PE/PT were offered to 572 terminally ill cancer patients, whereof 528 patients (92 %) were able to perform at least one PE/PT unit (average 4.2 units/patient). The most frequently feasible modalities were physical exercises in 50 %, relaxation therapy in 22 %, breathing training in 10 %, and positioning and lymph edema treatment in 6 % each. Physical exercise and positioning treatment were performed significantly more often in older patients (p?=?0.009 and p?=?0.022, respectively), while relaxation (p?=?0.05) and lymph edema treatment (p?=?0.001) were used more frequently in younger. Breathing training was most frequently performed in head and neck cancer (p?=?0.002) and lung cancer (p?=?0.026), positioning treatment in brain tumor patients (p?=?0.021), and lymph edema treatment in sarcoma patients (p?=?0.012).

Conclusions

PE/PT were feasible in >90 % of terminally ill cancer patients to whom PE/PT had been offered. Physical exercises, relaxation therapy, and breathing training were the most frequently applicable methods. Prospective trials are needed to evaluate the efficacy of specific PE/PT programs in terminally ill cancer patients.     

The first 2 years of a palliative care consultation team in the Netherlands

In January 1999 an integrated multidisciplinary palliative care consultation (PCC) team was established in Maastricht in the Netherlands. The team included experts in palliative care who had extensive experience in a variety of settings. One of the major tasks of the PCC team was to give support, information and advice to healthcare professionals caring for terminally ill patients. The PCC team was asked by the government to consecutively register and evaluate all consultations. This article describes these consultations, including information on the requesting caregivers, the patients, the questions asked and the recommendations given in the first 26 months. The results show that the PCC team served the needs of professional caregivers in a variety of settings. Most consultations concerned physical and pharmacological problems and the majority of recommendations were evaluated as positive.     

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.     

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.     

老年鼻咽癌病人家庭照护者对缓和医疗需求及相关因素分析

[目的]了解老年鼻咽癌病人家庭照护者对缓和医疗需求的现状,分析相关因素。[方法]采用简单随机抽样法,于2018年2月—2019年8月选取广西医科大学附属第一医院老年鼻咽癌病人的家庭照护者为研究对象。采用自行设计的问卷,调查家庭照护者的一般资料及对缓和医疗的需求情况,分析影响家庭照护者对缓和医疗需求因素。[结果]老年鼻咽癌病人家庭照护者对缓和医疗需求总分为(89.11±14.78)分,其中以照护者精神心理需求的得分指标最高;拟合多元线性回归分析结果显示,年龄、有无照护经验及与病人关系是影响家庭照护者对缓和医疗需求的独立因素(P<0.05)。[结论]老年鼻咽癌病人家庭照护者对缓和医疗需求程度高,且需求愿望与照护者年龄、有无照护经验及与病人关系有关,应具有针对性进行专业知识宣教及心理健康教育,有助于改善家庭照护者的心理状态,优化病人的生活质量。     

Terminal cancer patients and timing of referral to palliative care: a multicenter prospective cohort study. Italian Cooperative Research Group on Palliative Medicine.

This study describes the characteristics of a representative sample of terminally ill cancer patients at admission to Italian palliative care programs, the rate and reasons for discontinuation of care, and survival after enrollment. All Italian palliative care units (PCUs) specifically committed to palliative care were asked to consecutively register all new patients (n = 3901) between January and June, 1995. Fifty-eight of the 62 PCUs contacted by the Steering Committee completed the study. A random sample of 589 evaluable patients was prospectively selected from the 2667 eligible patients. Patients were mostly referred by a general practitioner (31.2%) or a specialist (42.1%). Most patients (84.7%) were followed until death. Seventy-seven discontinued care because of hospital admission (6.6%), change of residence (3.9%), refusal (1.7%), or improvement (0.8%). Median survival was 37.9 days; 14.3% of the patients died within 7 days, and 15.3% lived longer than 180 days. A statistically significant association between survival and gender, cancer type, setting of the first visit, and type of unit was observed. In Italy, as in other countries with different health systems, referral of cancer patients to palliative care tends to occur late in the course of the disease. This study suggests that the process of enrollment and the duration of patients' survival in palliative care, when studied in large unselected populations, can provide important information relevant to the care of terminally ill patients.     

Patient perceptions of an outpatient palliative care intervention: "It had been on my mind before, but I did not know how to start talking about death..."

Little is known about whether introducing palliative care to seriously ill outpatients continuing to pursue treatment of their disease is acceptable or beneficial to patients. Intervention patients in a trial of outpatient palliative care consultation completed structured exit interviews as part of a qualitative study. Participants had advanced heart or lung disease or cancer, and a life expectancy between 1 to 5 years as estimated by their primary care physician (PCP). Thirty-five of 50 intervention patients (70%) completed the final interview. Twenty-one patients (60%) reported that the team uncovered previously undiagnosed medical problems, 12 patients (34.3%) reported decreased primary care visits, and 8 (22.9%) reported avoiding emergency department visits. Most patients reported improved satisfaction with family caregivers (85.7%), PCPs (80%), and the medical center (65.7%). Most patients (68.6%) would have wanted the intervention even earlier in the course of their illness. Seriously ill outpatients found palliative care acceptable and helpful, reporting increased satisfaction and decreased health care utilization.