The charity Sue Ryder has called for there to be a ‘national conversation’ about death and greater dialogue between health and care professionals and families about what to expect, and what they can do, as the death of someone close approaches. This follows new research, launched as part of the charity’s ongoing #FacingLossTogether campaign. (Sue Ryder)
Heidi Travis the chief executive said: “death is an inevitable part of all our lives, and yet in modern society […] it has become a taboo subject that many of us find difficult to broach.”
The charity’s survey reveals a significant number of people struggle with uncertainty about what to do when someone close to them is dying. The research among 1,000 bereaved adults in UK found that:
over 40% of those that had questions or worries wanted to know what physical or mental changes they should expect when someone close to them was near death.
Other key questions and worries included:
whether to bring up difficult issues with their dying family member or friend before the end of their life (21%)
how to make them more comfortable (58%)
whether they should die in a more comforting environment than a hospital ward (18%)
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.’
Objective: Few studies have utilised observation to investigate retained awareness when individuals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed.
Method: Five family groups (14 individuals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis.
Results: One superordinate theme: Distinctive family bonds; overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities.
Conclusion: Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels; and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.
Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive | BMC Palliative Care
Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined.
Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.
The aim of this study was to evaluate quality of care provided to dying patients and their families in acute hospitals from the perspective of bereaved relatives | BMJ Supportive & Palliative Care
Background: The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire.
Conclusions: Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed.
This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey.
During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions.
FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3).
This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high.
Goebel, S. et al. BMC Palliative Care | Published online: 19 April 2017
Background: Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care.
Conclusions: The participants’ reactions and opinions about receiving the anniversary card were decidedly positive and indicate the continuation of this practice. Those few less pleased reactions may be related to timing and the first anniversary of the patients’ death and therefore an expression of grief rather than a dissatisfaction with bereavement anniversary cards, as such.