eLetters

23 e-Letters

  • Not just in palliative care

    Elizabeth Davies uses palliative care "to explore the potential use of poetry in healthcare". And indeed its use can be much wider. As she points out, "For those who enjoy reading poetry, discussing or writing it can become a means of expressing emotion, making sense of events and putting a biographical story togerther."
    That was my experience following the deaths, in a motor vehicle accident, of my eldest son Marcus and his partner Rachael. Verse written, wept over, and repeatedly revised during the year after their deaths was, I'm sure, helpful in my coming to accept, at a 'gut level' as well as intellectually, what had happened.
    And it wasn't helpful just to me. When a selection of the verse (1) was published to raise money for a trust in memory of Marcus and Rachael, it also proved useful to some who had suffered similar bereavement, perhaps because the writer had experienced the same hell as them:
    "but our souls too
    are pierced by a sword." (2)
    (1) 'As Well as Joy - Elegies for Marcus and Rachael'; Rachael Gloag and Marcus Fitchett Memorial Medical Education Trust, Dunedin, 1998
    (2) Ib.; p. 40. 'The Feast of the Presentation of Jesus in the Temple'.

  • Circles of care

    Many thanks for this interesting article which overviews the historical and social developments in the Western world. With respect to definition of communities in the context of compassionate communities, we defined quite specifically what this is in our article Circles of care: should community development redefine the practice of palliative care?Abel J, et al. BMJ Supportive & Palliative Care 2013;3:383–388. doi:10.1136/bmjspcare-2012-000359. Communities exist in the context of inner and outer networks, supported by the surrounding community. These networks are no longer defined by geographical boundaries as there are forms of support involving digital technology. Support is given in many ways and it is the resilience of these community networks that makes an enormous difference at end of life, as explained by Horsfall et al in their research End of life at home: Co-creating an ecology of care
    D Horsfall, A Yardley, R Leonard, K Noonan… - 2015 - researchdirect.westernsydney.edu …

  • How do you define voluntarily stopping eating and drinking?

    Dear Editor
    In this issue, Shinjo et al reported that, among Japanese home hospice physicians and palliative care specialists, 32% replied that they had experience in caring for patients who had voluntarily stopped eating and drinking (VSED). 1 Their mean years of clinical experience overall, and in the field of palliative medicine, were 26 years and 13 years, respectively. According to the authors, Japanese patients were also trying to implement VSED to hasten their deaths themselves.

    We congratulate the authors on publishing this very important epidemiologic data in Japan. As the authors point out, the study is limited by both recall and social desirability biases, which could explain some inaccuracy in their survey results. Moreover, we wonder whether the way in which VSED was defined in this study also contributed to the relatively high prevalence of physicians who had experience with this practice.

    In their questionnaire, VSED was defined as “terminal ill patients electing to stop taking water and nutrition despite the fact that they do not suffer from a difficulty in oral intake such as gastrointestinal obstruction or cachexia”. VSED is an under-recognized practice and there are few data available. Especially in Japan, as they reported, only half of the palliative care physicians were aware of VSED. While their definition was not inaccurate, it is possible that this definition failed to convey the gravity of VSED and, as a result, physicians...

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  • A comment to Shinjo T et al.: collusion in VSED

    Letter to the Editor
    Shinjo et al. recently surveyed Japanese home hospice and palliative care physicians’ with regard to their experiences of caring for patients who voluntarily stop eating and drinking (VSED) in order to hasten death and questioned their opinion towards continuous deep sedation (CDS) as a mean to relieve patients’ refractory symptoms during VSED (1). According to the authors, attitudes of non-acceptance of CDS in VSED (36%) may have been related to the opinion that the use of sedatives during VSED was commensurate with euthanasia. Compared to Dutch family physicians - of whom an overwhelming majority endorsed CDS in VSDE -, acceptance was rather low among Japanese physicians (15%), and the authors evoke that physicians may face a « moral conflict in respecting the patient’s self-determination and allowing patient suicide ».
    While we value the authors’ contribution to this clinically relevant topic, we would like to complete their point of view with regard to the possible underlying reasons of the physicians’ attitudes. Indeed, ethical elements may play a role, but psychological dynamics may also have influenced their stance. We have previously raised attention to the existence of collusions in end-of-life care (2). Collusion, an unconscious dynamic between patients and caregivers, occurs in situations which reflect an unresolved psychological issue shared by the involved persons; it may provoke strong emotions and unreflected behaviour (3). F...

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  • Preferred Place of Death: Time for a Rebirth

    In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)

    The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.

    In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.

    The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home...

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  • EPaCCS and the need for research
    Matthew J Allsop

    We agree with Sleeman and Higginson [1] who emphasised the need to gather evidence of effectiveness of EPaCCS before widespread and uncritical adoption by the NHS. An EPaCCS evaluation framework was recently developed by our team on behalf of end of life commissioners in Leeds [2]. There was, and remains, a scarcity of guidance on approaches to gathering evidence for EPaCCS but we identified factors that highlight the c...

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  • Warning - EPaCCS may NOT facilitate home deaths
    Lesley Wye

    As the lead of a Marie Curie funded study of EPaCCS, I welcome the attention that electronic palliative care systems are increasingly receiving. However unlike Petrova et al, I believe the "striking" EPaCCS results on facilitating home deaths mentioned by Petrova et al may largely be explained by selection bias.

    In our mixed methods study, we too found impressive results in that those with an electronic EPaCCS...

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  • Are mental disorders still a significant factor in denying or granting requests for hastened death?
    Keith M. Swetz
    Wilson and colleagues are to be commended for their excellent work in exploring mental illnesses and desire for death in patients receiving palliative care with malignancy. [1] The piece thoughtfully explores the prevalence of depression, anxiety and mood disorders and the association between these diagnoses and a standardized quantification of the patient's desire for death. In all, the authors found that 30.5% of participants e...
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  • Evidence based policy in palliative care - time to learn from our mistakes
    Katherine E. Sleeman

    The article by Petrova et al is timely and thought provoking.1 EPaCCS (Electronic Palliative Care Coordination Systems) have good face value: they appear so obviously a good idea. But scratch beneath the surface, as Petrova and colleagues have done, and important challenges in public perceptions, funding, information governance, context and health care IT become apparent.

    EPaCCS are electronic information system...

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  • Canadian Palliative Care Physicians Concerned about Assisted Suicide too.
    Susan M MacDonald

    British and European palliative care physicians are not alone in their concerns and reluctance to participate in Physician Assisted Suicide/Euthanasia. Canadian Palliative care physicians struggle with this issue as well. In 2010, the Canadian Society of Palliative Care physicians (300 members) were surveyed. (1) The questions were specific: "Are you for or against PAS/Euthanasia?" "Would you provide assisted suicide?" "W...

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