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Patients with terminal cancer receiving home palliative care present differential healthcare utilization trajectories before death. It remains unclear which situational elements influence these trajectories among disparate patient groups. The aim of this study was to compare situational influences on “persistently high” and “low stable” trajectories of healthcare utilization in patients who received palliative care support at home.
Methods
Bereaved family caregivers were recruited from our prior quantitative study investigating healthcare utilization trajectories in oncology patients on home-based palliative care. In-depth interviews were conducted with 30 family caregivers. Data were analyzed using thematic analysis.
Results
Analysis of data uncovered how the 2 utilization trajectories were influenced by the interplay of 1 or more of 4 situational elements. Perceived symptom control in patients, influenced by their determination to die at home, shapes the susceptibility to situational contingencies, resulting in differential utilization trajectories. Caregivers’ mental readiness in dealing with unexpected circumstances has a significant impact on the overall manageability of care, ultimately affecting decisions related to healthcare utilization. The concordance between symptom needs and scope of homecare services in a given situation proves to be an important determinant. Lastly, perceived accessibility to informal support in times of need acts as a contextual reinforcement, either preventing or precipitating decisions regarding healthcare utilizations.
Significance of results
Our findings hold important implications for the provision of homecare services, in particular, the need for comprehensive assessment of end-of-life wishes during homecare enrolment and strengthening psychological preparedness of caregivers. Expansion of home-based clinical interventions tailored to high utilizers, and funding for temporary in-home respite should be considered to optimally manage potentially preventable acute healthcare utilization.
The aim of the present cross-sectional study was to investigate the associations between caregivers’ attachment styles, family functioning, the care setting and pre-loss grief symptoms, the burden, and the caregivers’ belief of patients’ awareness of the terminal cancer diagnosis.
Methods
A total of 101 caregivers of patients with terminal cancer in residential hospice care and home care were interviewed and completed self-report questionnaires.
Results
Insecure attachment style and home care setting were associated with worse psychological effects in caregivers of patients with terminal cancer. Moreover, family cohesion can promote low social burden and the patient’s awareness of their terminal condition.
Significance of results
This study highlighted the importance of evaluating the caregiver’s attachment style, family functioning, and the setting of care during the terminal phase of the patient’s life. These findings will be useful to planning interventions to prevent burden and the pre-loss grief symptoms in the caregivers.
Although palliative care units treat patients with various comorbidities, there are no reports of patients with obsessive-compulsive disorder (OCD).
Methods
The treatment and care of a breast cancer patient with OCD are presented.
Results
A woman in her 40s was admitted to the palliative care unit for terminal breast cancer. She spent most of the day cleaning the bath and bed areas, ignoring efforts to restrain her actions by the staff. After being diagnosed with OCD, the above symptoms improved through the coordinated action of the staff and medication.
Significance of results
This is the first report of the diagnosis and treatment of a patient with OCD in a palliative care unit. Early psychiatric diagnosis and subsequent staff response contributed to improvement in the patient’s quality of life.
Patients with terminal cancer often experience physical and mental distress. Signing a do-not-resuscitate order (DNR) is crucial to protect against invalid treatment. This study aims to explore the effect of hospice shared care intervention by medical staff on the completion of a DNR-S (DNR order signed by surrogates) for patients with terminal cancer.
Method
The cross-sectional study in this research involved secondary analysis of data from the 2011–2015 clinical cancer case management database of a medical center in central Taiwan. Those with a DNR order signed by patients (DNR-P) or DNR-S before the hospice shared care consultation were excluded from this study; a total of 1,306 patients with terminal cancer were selected.
Results
This study demonstrated that the percentage of DNR-S after consultation involving both nurse and physician was 75.4%. With other variables controlled, the number of DNR-Ss after consultation with a nurse was significantly lower [odds ratio (OR) = 0.57, 95% confidence interval (CI) = 0.42–0.75] and that of DNR-Ss after consultation involving both nurse and physician was significantly higher (OR = 1.35, 95% CI = 1.01–1.79), than that of DNR-Ss after consultation with only the physician.
Significance of results
Joint involvement of the nurse and physician in hospice care provides sufficient information to patients and family with terminal cancer about their condition and enhances doctor–patient communication. This effectively assists patients with terminal cancer and their family members in making the major decision of signing a DNR, alleviates the concerns of patients and family members about signing a DNR, and reduces terminal cancer patients’ pain at the end of life to ensure that they die in peace and dignity.
There are many terminally ill cancer patients who are struggling with the meaning of life, but it cannot be said that their concerns are being adequately addressed.
Method
From a series of cancer patients undergoing end-of-life care, the case of a patient, who developed incurable lung cancer and, together with his wife, lost the meaning of life and underwent meaning-centered couples psychotherapy once every two weeks to have them consider the meaning of life together, is presented.
Results
The patient was a 70-year-old man who had been diagnosed with lung cancer and pleural dissemination 14 months earlier. The meaning-centered psychotherapy (MCP) sessions were conducted with the patient and his 70-year-old wife by a cancer nursing specialist who had received extensive training in MCP and had also received 7-year on-going supervision from a Japanese MCP-enlightened psychologist. At the same time, palliative treatment of physical distress was performed. The patient was able to discover the meaning of life as a result of MCP performed by a cancer nursing specialist for him and his spouse who had lost any notion of the meaning of life after being informed that he had terminal cancer at the time of the initial diagnosis.
Significance of results
Meaning-centered psychotherapy provided to terminal cancer patients by cancer nurses can help patients and their families express their gratitude, thereby achieving a good death for the bereaved family. Nurses are likely to increasingly perform MCP in the future.
The terminal phase of cancer represents a major crisis for the family system. Regardless of the caregiving role they undertake, family members are forced to address multiple impacts when facing the approaching death of their terminally ill loved one. International guidelines recognize the importance of integrating the family into a care plan. However, more needs to be known about how to deliver optimal family support. The purpose of this study is to review the current state of the art in family/caregiver-focused interventions of people with terminal cancer in palliative care.
Method
For this purpose, an overview of the literature's systematic reviews on the topic was conducted to select Randomized Controlled Trials (RCTs) on family/caregiver-focused interventions.
Results
Nine interventions were found in the systematic reviews of literature and meta-analysis. These family/caregiver-focused interventions were then thoroughly and critically analyzed. Despite the heterogeneity with regard to their characteristics, the interventions commonly focused on caregiving matters, were brief in duration, and delivered by non-mental health experts. The efficacy of such interventions was seen as modest.
Significance of results
Family/caregiver-focused interventions in palliative care remain a matter of concern and more research is needed to identify adequate and effective ways of helping families that face the crisis of terminal illness in the system.
Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.
Method
Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.
Result
A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the “color” of death, social and professional support, the moment of death, and grief and loss.
Significance of results
The analysis showed that caregiving may positively or negatively influence the bereavement process.
The experience of living with dying has attracted limited research. We utilized interpretive phenomenological analysis to explore the lived experience of individuals with terminal cancer receiving palliative care in Ireland.
Method:
Participants were purposely selected from public interviews that had been conducted between 2006 and 2011. The study included the accounts of eight participants (N = 8; six females and two males) with a diagnosis of terminal cancer. Participant ages ranged from 36 to 68 years.
Results:
Three master themes emerged from the analysis: the personal impact of diagnosis, the struggle in adjusting to change, and dying in context. The results revealed that participants were still living while simultaneously dying. Interestingly, participants did not ascribe new meaning to their lives. The terminal illness was understood within the framework of the life that had existed before diagnosis. They strove to maintain their normal routines and continued to undertake meaningful activities. Management of unfinished business and creation of a legacy were salient tasks. Social withdrawal was not present; rather, participants engaged in emotional labor to sustain valued roles. However, we found that within the public domain there is a paucity of education and discourse supporting individuals at the end of life. The hospice was noted as an important external resource. Each participant experienced a unique dying process that reflected their context.
Significance of Results:
Healthcare professionals need to recognize the subjectivity of the dying process. Dying individuals require support and options to maintain their personhood.
The primary objective of this article is to elucidate the significance of psychosocial distress and risk in a sub-population of end-stage cancer patients and their spouse caregivers who present with an especially challenging attachment style and histories of childhood trauma. The case study presented highlights the need to both identify and offer an empirically validated couple–based intervention, along with a multi-disciplinary team approach over the trajectory of the illness and at end of life.
Method:
A validated marital protocol (emotionally focused couple therapy [EFT]) is modified for this population and conducted by an EFT-trained psychologist as part of a pilot investigation as to the feasibility and effectiveness of EFT for the terminal cancer population. Measures of marital distress, depression, hopelessness, and attachment security are completed at baseline and subsequent intervals, as reported in another publication. Attachment insecurity and the exquisitely intimate relationship with caregiving and care receiving are underscored, given the couple's traumatic childhood history.
Results:
The couple described herein, followed from diagnosis of metastatic disease to end of life illuminates the potential effectiveness of a modified EFT protocol, and underscores the need to both identify and intervene with a population potentially at significantly high risk for marital distress, suicidality, depression, and hopelessness.
Significance of Results:
The benefits of a multidisciplinary team is evident as the patient's symptoms of physical distress increased toward end of life and she returned to earlier behaviors, namely suicidal ideation and an attempt to alleviate her experience of suffering. The strength of the marital bond, possibly as a result of the intervention, and the efforts of the multidisciplinary team approach, demonstrate potential to mitigate a catastrophic end of life and a complicated spousal bereavement. This case study adds to the current empirical literature in an area that is currently under-studied and under-reported.
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