‘Because it’s the wife who has to look after the man’: A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life

Williams, L.A. Palliative Medicine. Published online: 1 July 2016.

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Background: Research indicates that women are the primary family caregivers for others at life’s end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women’s understandings of providing care.

Aim: To explore how gender norms constructed older women’s views about the appropriate roles of women and men in providing palliative and end-of-life care for family members.

Design: Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants’ reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women’s caregiving experience.

Setting/participants: A total of 36 women in the age ranges of ‘50–59 years’ through to ‘90–99 years’ from New Zealand.

Results: Three themes regarding gender and caregiving were identified: the expectation women will care, women’s duty to care and women’s construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction.

Conclusion: The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers.

Read the abstract here

Doctors need more training in care of the dying, experts say | The BMJ

BMJ 2015; 351 doi: http://dx.doi.org/10.1136/bmj.h4792 (Published 07 September 2015)

The recent draft guideline from the National Institute for Health and Care Excellence on care of the dying is a good summary of evidence but not much help at the bedside, two experts on palliative care have said.

Since the demise of the Liverpool care pathway, acute trusts have been left to their own devices over adult palliative care, Jonathan Koffman and Katherine Sleeman, from the Cicely Saunders Institute in London, told journalists at the Science Media Centre, London, on 3 September. They said that NICE’s 266 page guideline,1 which is out for public consultation until 9 September, provided no substitute for the Liverpool care pathway, which was abandoned after a review by Julia Neuberger in 2013 found a lack of strong evidence for either its benefits or its harms.2

The Liverpool care pathway had the virtue of brevity but had tended to become little more than a “tick box” that was inconsistently interpreted, Sleeman said. “Caring was often wholly absent” in the care of the dying, she said. The pathway was blamed in the media for egregious examples of poor care, and Neuberger’s review applied the final blow.

But what is left is far from ideal. Half of all deaths occur in hospital, but little training is given to either doctors or nurses about how to handle them. Dying patients are not a vocal constituency, said Koffman, and their family members do not often wish to dwell on their loved ones’ last days. But he cited the words of Cicely Saunders: “How people die remains in the memory of those left behind.”

via Doctors need more training in care of the dying, experts say | The BMJ.

Life after the Liverpool Care Pathway (LCP)

The LCP was widely used with an aim to improve communication and care for dying individuals and their relatives. However, widespread media criticism prompted a review, which resulted in the discontinuation of the LCP across U.K. clinical settings.1 Three key themes emerged: 1) “lessons learned”; 2) “uncertainties and ambivalences”; and, 3) “the future.” Critical care practitioners reported life after the LCP … often involved various clinical ambivalences, uncertainties and inconsistencies in the delivery of end-of-life care (EOLC), especially for less experienced practitioners. They had “become accustomed” to the components of the LCP, which still guide them in principle to ensure quality EOLC. The LCP’s format was perceived to be a useful clinical tool, but was criticized as a “tick-box exercise,” and for lacking family involvement. Despite experienced practitioners being able to deliver quality EOLC without using the LCP, junior nursing and medical staff need clear guidelines and support from experienced mentors in practice. Evidence-based guidelines related to family involvement in EOLC planning in critical care settings are needed to avoid future controversies.

Reference: Life after the Liverpool Care Pathway (LCP): A qualitative study of critical care practitioners delivering end-of-life care  JOURNAL OF ADVANCED NURSING | Online – 13 May 2015