Merryn Gott

Dying trajectories in heart failure

Objectives: To explore dying trajectories in heart failure. Design: Prospective, longitudinal study. Setting: Sixteen GP surgeries in four demographically contrasting areas of the UK. Participants: A total of 27 heart failure patients, >60 years of age, who completed questionnaires for at least five time-points before death. Main outcome measures: Kansas City Cardiomyopathy Questionnaire Physical Limitation Scale. Results: No ‘typical’ dying trajectory could be identified, and only a minority of patients conformed to the theoretical trajectory of dying in heart failure. Conclusions: This study provides the first prospective data regarding physical decline prior to death in heart failure. Findings challenge current efforts to plan and deliver palliative care services on the basis of the theoretical heart failure dying trajectory.

Older people's views of a good death in heart failure : Implications for palliative care provision

Palliative care in the UK has been developed to meet the needs of predominantly middle aged and younger old people with cancer. Few data are available regarding the extent to which services respond to the specific needs of an older group of people with other illnesses. This paper draws on in-depth interviews conducted with 40 people (median age 77) with advanced heart failure and poor prognosis to explore the extent to which older peoples views and concerns about dying are consistent with the prevalent model of the good death underpinning palliative care delivery. That prevalent model is identified as the revivalist good death. Our findings indicate that older peoples views of a good death often conflict with the values upon which palliative care is predicated. For example, in line with previous research, many participants did not want an open awareness of death preceded by acknowledgement of the potential imminence of dying. Similarly, concepts of autonomy and individuality appeared alien to most. Indeed, whilst there was evidence that palliative care could help improve the end of life experiences of older people, for example in initiating discussions around death and dying, the translation of other aspects of specialist palliative care philosophy appear more problematic. Ultimately, the study identified that improving the end of life experiences of older people must involve addressing the problematised nature of ageing and old age within contemporary society, whilst recognising the cohort and cultural effects that influence attitudes to death and dying.

Challenging Social Myths and Stereotypes of Women and Aging: Heterosexual Women Talk About Sex

ABSTRACT Cultural representations of aging and sexuality combine to paint a particular picture of mid and later life for women: menopause is constructed as a time when women either lose or renew their interest in sex, and later life a time when sexual activity no longer assumes importance yet remains vital to healthy aging. This article examines the importance of sexual activity to “older” women, paying particular attention to how they negotiate such representations. In-depth interviews were conducted with 19 women aged 50 and older recruited from Sheffield, UK. A material-discursive analysis revealed that whilst participants rejected the asexual discourse of aging they accepted it for women older than themselves. They constructed women per se as sexually complex, in comparison to men, making sexual activity “risky business” for women, and positioned their own sexual desire as responsive, either to a mans sexual desire or to their own hormones. Finally, sexual activity was constructed as having psychological and physiological benefits for couples within committed relationships. The findings are discussed in terms of their implications for research, theory and clinical practice.

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review

BACKGROUNDnThe care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers.nnnAIMnTo explore factors that support partnership working between specialist and generalist palliative care providers.nnnDESIGNnSystematic review.nnnMETHODnA systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011.nnnRESULTSnOf the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care.nnnCONCLUSIONnMultiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.

Recruiting older people into a large, community-based study of heart failure

This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II—IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK. Ethical issues arising around gate-keeping, terminology and participant burden are discussed along with challenges faced during the recruitment process. Strategies to increase general practitioner and patient recruitment are provided. The paper concludes that prospective longitudinal studies are of particular relevance to chronic illness, and the complexity of setting up such research must be acknowledged and appropriately resourced.

Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK

BackgroundThis paper explores carers views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.MethodsTwenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.ResultsFindings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered good. Carers adopted a range of coping strategies to deal with grief including using their faith and busying themselves with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling.DiscussionOur findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers perceptions about prioritising making the dying person comfortable can be in conflict with doctors decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.

The nature of, and reasons for, ‘inappropriate’ hospitalisations among patients with palliative care needs: A qualitative exploration of the views of generalist palliative care providers

Background: Recent studies have concluded that there is significant potential to reduce the extent of ‘inappropriate’ hospitalisations among patients with palliative care needs. However, the nature of, and reasons for, inappropriate hospitalisations within a palliative care context is under-explored. Aim: To explore the opinions of ‘generalist’ palliative care providers regarding the nature of, and reasons for, inappropriate admissions among hospital inpatients with palliative care needs. Design: Qualitative study with data collected via individual interviews and focus groups. Setting/participants: Participants (n = 41) comprised ‘generalist’ palliative care providers working in acute hospital and community settings. Setting: One District Health Board in an urban area of New Zealand. Results: The majority of participants discussed ‘appropriateness’ in relation to their own understanding of a good death, which typically involved care being delivered in a ‘homely’ environment, from known people. Differing attitudes among cultural groups were also evident. The following reasons for inappropriate admissions were identified: family carers being unable to cope, the ‘rescue culture’ of modern medicine, the financing and availability of community services and practice within aged residential care. Conclusions: On the basis of our findings, we recommend a shift to the term ‘potentially avoidable’ admission rather than ‘inappropriate admission’. We also identify an urgent need for debate regarding the role of the acute hospital within a palliative care context. Interventions to reduce hospital admissions within this population must target societal understandings of death and dying within the context of medicalisation, as well as take into account cultural and ethnic diversity in attitudes, if they are to be successful.

Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital

BackgroundImproving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management.MethodsA prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded.ResultsNinety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan.ConclusionOne fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions.

Holding onto womanhood: a qualitative study of heterosexual women with sexual desire loss.

This article explores heterosexual womens accounts of sexual desire loss, particularly the ways in which it can affect their sense of themselves as women. In-depth interviews were conducted with 17 participants recruited through a psychosexual clinic in England, and the data analysed using a material-discursive approach. The findings showed that having sexual desire loss often challenged participants perceptions of themselves as women. Specific challenges related to dealing with isolation and `otherness, addressing their own feelings of not being `proper wives because they did not sexually satisfy their partners and maintaining a sense of sexual attractiveness in the absence of sexual desire. Participants responded to these challenges in various ways, often renegotiating their identities as women. The findings are discussed in relation to theorizing womens sexuality and their implications for health care.

‘Where do I go from here’? A cultural perspective on challenges to the use of hospice services

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non-Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access-to-care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients (Māori, Pacific and Asian self-identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non-users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community.