Age UK and the malnutrition taskforce have published a booklet and accompanying animation designed to help people have positive conversations about death with the people they care about.
Lets talk about death: How to have difficult conversations
Lesley Carter, Programme Head of Malnutrition Taskforce and Head of Health Influencing at Age UK said: ‘We know that having the confidence to start a conversation about dying and death is very hard, we struggle to find the right time, the right words and we are terrified of upsetting the other person and ourselves.
‘We have written this bright well-illustrated book and film that can be used to explore this issue with children, adults and professionals. We’ve explained why it is important to talk about dying and death, given ideas of how you could start a conversation, what you may want to say. Obviously, we are all different, you will find your own words. We hope that these resources will give you the confidence to give it a go.’
The booklet is available to download here
Krug, K. et al. (2016) BMC Palliative Care: 15(4)
Background: Family caregivers play a key role in palliative care at home, and understanding the interdependencies in the constellation of patient, family caregivers and service providers is important. As few longitudinal studies have examined the influence of patient quality of life (QoL) in palliative care on burden of family caregivers, the aim of this study was to identify correlations between changing patient QoL and changing burden of family caregivers that need consideration in patient management.
Methods: Palliative patients with cancer in primary care evaluated their QoL (Quality of Life Questionnaire Core 15 Palliative Care, QLQ-C15-PAL). They were assessed monthly for an interval of 6 months or until death of the patient. Family caregivers reported the burden they perceived while supporting the patient (Short form of the Burden Scale for Family Caregivers, BSFC). Longitudinal data were analysed for all patients with at least 3 available assessments, considering the most recent data for participants with more than 3 assessments. Changes in patient QoL were analysed using the Friedman test. In a stepwise regression analysis, influences of change in patient QoL on changing caregiver burden were investigated.
Results: One hundred patients (63 men, 37 women; average age: 68 years) were enrolled in the study. The most common primary diagnoses were colon, lung or breast cancer. In 58 cases, assessments were available from both patients and caregivers. Patients reported overall quality of life increasing towards end of life, although reporting that physical functioning deteriorated. Symptoms of pain and fatigue bothered patients most. Caregiver burden was moderate and on average did not change over time. In a stepwise regression model, the difference in emotional functioning and the difference in dyspnoea showed an influence on the development of caregiver burden (explained variance of 19.3 %).
Conclusions: Patients’ dyspnoea, feelings of depression and anxiety impacted on the perceived burden of family caregivers, but are manageable symptoms. Our results corroborate the need of regular assessment of patients’ needs taking into account caregiver burden. In this way, general practice teams can intervene early and may more likely meet patients’ needs in the end of life care process.
View the full article here
Cancer caregivers are key stakeholders in the final weeks of life and in bereavement. Research has highlighted end-of-life (EOL) factors important to caregivers, as well as factors contributing to caregiver mental health and bereavement outcomes.
This study’s purpose was to identify modifiable predictors of caregivers’ Caregiver Evaluation of Quality of End of Life Care (CEQUEL) scores, with the broader aim of informing clinical interventions to improve caregiver impressions of care and subsequent bereavement adjustment.
Findings suggest that place of death and hospice length of stay best predict bereaved caregiver evaluations of quality of EOL care. These findings equip health care providers with modifiable targets to improve caregivers’ experience of EOL care and subsequent bereavement.
Full reference: Higgins, P et al, Factors Predicting Bereaved Caregiver Perception of Quality of Care in the Final Week of Life: Implications for Health Care Providers Journal of Palliative Medicine. October 2015, 18(10): 849-857
Patients, family members, and healthcare professionals agree that communication is a central element in quality of care and satisfaction on palliative care units, according to a study reported in Journal of Palliative Medicine. Dori Seccareccia, MD, MCISc, at the Sunnybrook Health Sciences Centre in Toronto, and colleagues conducted a qualitative study to learn what elements of communication are important to patients, family caregivers, and health care providers. Five subthemes emerged that may underpin future education and quality improvement efforts.
Full reference: Seccareccia, D et al. Communication and Quality of Care on Palliative Care Units:A Qualitative Study. Journal of Palliative Medicine. Volume 18, Number 9, 2015