Prioritising palliative care

The Lancet, Volume 383, Issue 9930, Page 1694, 17 May 2014
Editorial: “Cure is not always available for patients with cancer, and palliative care, defined by WHO as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness”, should always be present. WHO also recommends that palliative care “is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life”, but how early is early enough for palliative care to be integrated into standard treatment, and what is the value of early involvement of palliative care? In today’s Lancet, Camilla Zimmermann and colleagues present the results of a cluster-randomised controlled trial to assess the effect of early outpatient-focused palliative care on several aspects of quality of life in patients with advanced cancer.”
Find editorial and links to research paper and commentary here.

Physicians’ practices when frustrating patients’ needs: a comparative study of restrictiveness in offering abortion and sedation therapy

J Med Ethics 2014;40:306-309 doi:10.1136/medethics-2012-101194
Author: Niels Lynøe
“In this paper it is argued that physicians’ restrictive attitudes in offering abortions during 1946–1965 in Sweden were due to their private values. The values, however, were rarely presented openly. Instead physicians’ values influenced their assessment of the facts presented—that is, the women’s’ trustworthiness. In this manner the physicians were able to conceal their private values and impede the women from getting what they wanted and needed. The practice was concealed from both patients and physicians and never publicly discussed. It is also argued that a similar tacit practice could currently be applied by palliative care physicians.”
Find abstract here.

Self-requested euthanasia for children in Belgium

The Lancet, Volume 383, Issue 9918, Pages 671 – 672, 22 February 2014
Authors: Bernard Dan, Christine Fonteyne, Stéphan Clément de Cléty
“In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking.1 In many countries, this change has been incorporated into national legislation in the past 20 years. …Belgium adopted a law decriminalising euthanasia under well-defined conditions.3 These conditions include a voluntary, carefully considered, and repeated request from a patient with unbearable suffering that cannot be alleviated and that results from a serious and incurable disorder. The physician must comprehensively discuss the palliative care options with the patient, who needs to consult another physician before the decision on euthanasia can be taken.  Under the terms of this law, euthanasia is a medical procedure.”
Find article here.

Labelling of end-of-life decisions by physicians

J Med Ethics Published Online 3 January 2014

Authors: Jef Deyaert, Kenneth Chambaere, Joachim Cohen, Marc Roelands, Luc Deliens

Potentially life-shortening medical end-of-life practices (end-of-life decisions (ELDs)) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices (described according to the precise act, the intention, the presence of an explicit patient request and the self-estimated degree of life shortening) they label as euthanasia or sedation.

Methods We conducted a large stratified random sample of death certificates from 2007 (N=6927). The physicians named on the death certificate were approached by means of a postal questionnaire asking about ELDs made in each case and asked to choose the most appropriate label to describe the ELD. Response rate was 58.4%.

Results In the vast majority of practices labelled as euthanasia, the self-reported actions of the physicians corresponded with the definition in the Belgian euthanasia legislation; practices labelled as palliative or terminal sedation lack clear correspondence with definitions of sedation as presented in existing guidelines. In these cases, an explicit life-shortening intention by means of drug administration was present in 21.6%, life shortening was estimated at more than 24?h in 51% and an explicit patient request was absent in 79.7%.

Discussion Our results suggest that, unlike euthanasia, the concept of palliative or terminal sedation covers a broad range of practices in the minds of physicians. This ambiguity can be a barrier to appropriate sedation practice and indicates a need for better knowledge of the practice of palliative sedation by physicians.”

Find study here.

Palliative and end of life care Priority Setting Partnership

James Lind Alliance, Palliative and end of life care Priority Setting Partnership

What are the aims of the partnership?

The partnership is bringing together organisations interested in palliative and end of life care. The aim is to consult people likely to be in the last years of life, current and bereaved carers and families, and healthcare professionals about what questions they believe need answering through research.

Together we will prioritise these research needs to ensure that future research improves the care and support that can be provided for those in the last years of life, their carers and families…”

Find website here.

Prolonged disorders of consciousness: national clinical guidelines

Royal College of Physicians 12 December 2013

National clinical guidelines on the care of people in a vegetative or minimally conscious state, following severe brain injury

These long-awaited guidelines will be a major contribution to clinical and ethical standards of care for this group of patients, not only in the UK but internationally. For England and Wales, they provide much needed clarity on legal decision-making…

The guidelines were developed by a panel of experts in the field, who have organised complicated and wide-ranging information into six coherent sections:

1 Defining criteria and terminology
2 Assessment, diagnosis and monitoring
3 Acute to longer-term management
4 Ethical and medico-legal issues
5 End-of-life issues
6 Service organisation and commissioning

Each section is followed by a set of clear recommendations…”

Find guidelines here.

It’s been a long struggle, like pushing a big rock up a steep hill, but advanced care planning is now here to stay

Editor: Melissa Sweet
Croakey, the Crikey Health Blog, online 3 Sep 2013
“After more than two decades of struggle, Advance Care Directives are finally gaining acceptance within the health system.  That’s according to Colleen Cartwright, Foundation Professor of Aged Services and Director of the ASLaRC Aged Services Unit at Southern Cross University.  At the 12th Australian Palliative Care Conference in Canberra this week, Professor Cartwright will talk about Advance Care Directives, as well as the views of palliative care physicians on withholding and withdrawing life-sustaining treatment from adults who lack capacity.”
Find article here.

What does it take to make palliative care “everybody’s business”?

Croakey, the Crikey Health Blog, online 2 September 2013
Editor: Melissa Sweet
“Palliative care must be embedded into the education and training of all health professionals across their careers, says Dr Yvonne Luxford, the CEO of Palliative Care Australia.  This is necessary to help turn around the widespread view within the health system that death is a failure, and to support wider access to palliative care, she says.  …In the online Q and A with Jennifer Doggett below, on the eve of the 12th Australian Palliative Care Conference, Dr Luxford also stresses the need to improve access to palliative care in aged care services, and examines some of the cultural issues around death and dying, particularly for Aboriginal and Torres Strait Islander people.”
Find Q/A here.

Failing a patient 3 times: A case of moral medical malpractice

KevinMD, By Dr. M. Williams-Murphy, August 24, 2013

How did we arrive at a place where the doctor doesn’t think there is anything to do for the actively dying patient? Do we think that if we cannot order an IV drug or put in a central line that there is nothing for us to do? Doctors still hold a priestly role in society whether we accept and fulfill this role or not. It is high time that we take this mantle back upon us and be hell-bent on making sure that our dying patients are having “good deaths,” with as much devotion as we give to “saving” our patients and attempting to give them a “good life.”

Find article here.

Australian health policy and end of life care for people with chronic disease: An analysis

Health Policy, available online 13 August 2013
Authors: Teresa Burgess, Annette Braunack Mayer, Gregory B. Crawford, Justin Beilby
“End of life care for people with advanced chronic disease is a growing international, imperative, with the majority of deaths in the world now related to chronic disease. The provision of, care that meets the needs of people with advanced chronic disease must be guided by appropriate, policy. The key policy areas impacting directly on end of life care are related to chronic disease, palliative care and, increasingly, aged care. This paper describes the outcomes of an audit of Australian chronic disease and end of life/palliative, care policies.”
Find abstract here.