Talking about death

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


Palliative care for Parkinson’s disease: Patient and carer’s perspectives explored through qualitative interview

Fox, S. et al. Palliative Medicine. Published online: September 28 2016


Background: Palliative care is recommended for non-malignant illnesses, including Parkinson’s disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a ‘fear’ in their patients about introducing palliative care. However, less is known about the views of people with Parkinson’s disease and their carers about palliative care.

Aim: (1) To explore the palliative care and related issues most affecting people with Parkinson’s disease and their families and (2) to examine perceptions about/understanding of palliative care.

Design: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis.

Setting/participants: A total of 31 people participated, both people with Parkinson’s disease (n = 19) and carers (n = 12), across three Movement Disorder Clinics in the Republic of Ireland.

Results: People with Parkinson’s disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson’s disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs.

Conclusion: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson’s disease and their carers, and people with Parkinson’s disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson’s disease.

Read the abstract here

Inpatient transfer to a care home for end-of-life care: What are the views and experiences of patients and their relatives?

Thomas, T. et al. Palliative Medicine. Published online: July 2016

Background: Transfers from hospital or ‘hospice palliative care units’ to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals.

Aim: To understand the experiences of patients discharged to care homes for end-of-life care.

Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care.

Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough’s weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one’s quality of life and that the process of finding a care home had been traumatic. No studies investigated patients’ views prospectively, the views of staff or the processes of decision-making.

Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.

Read the abstract here

Advance care planning in motor neuron disease: A qualitative study of caregiver perspectives

Murray, L. et al. Palliative Medicine. February 4, 2016

Background: Motor neuron disease is a fatal disease, characterised by progressive loss of motor function, often associated with cognitive deterioration and, in some, the development of frontotemporal dementia. Life-sustaining technologies are available (e.g. non-invasive ventilation and enteral nutrition) but may compromise quality of life for some patients. Timely commencement of ‘Advance Care Planning’ enables patients to participate in future care choices; however, this approach has rarely been explored in motor neuron disease.

Aim: We aimed to investigate caregiver perspectives on the acceptability and impact of advance care planning, documented in a letter format, for patients with motor neuron disease and caregivers.

Design: This is a qualitative cross-sectional study. Data were analysed by a narrative synthesis approach.

Participants and setting: Structured interviews were held with 18 former caregivers of deceased patients with motor neuron disease. A total of 10 patients had created a disease-specific advanced directive, ‘Letter of Future Care’, and 8 had not.

Results: A total of four global themes emerged: Readiness for death, Empowerment,Connections and Clarifying decisions and choices. Many felt the letter of future care was or would be beneficial, engendering autonomy and respect for patients, easing difficult decision-making and enhancing communication within families. However, individuals’ ‘readiness’ to accept encroaching death would influence uptake. Appropriate timing to commence advance care planning may depend on case-based clinical and personal characteristics.

Conclusion: Advance care planning can assist patients to achieve a sense of control and ‘peace of mind’ and facilitates important family discussion. However, the timing and style of its introduction needs to be approached sensitively. Tools and strategies for increasing the efficacy of advance care planning for motor neuron disease should be evaluated and implemented.

Read the abstract here

Correlation between patient quality of life in palliative care and burden of their family caregivers: a prospective observational cohort study

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

Bereaved Caregiver Perception of Quality of Care in the Final Week of Life

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

Communication essential to quality of care on palliative units

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