Deep brain stimulation at end of life: clinical and ethical considerations

Journal of Palliative Medicine, 2019 August 12

Lauren R Sankary, Paul J Ford, Andre G Machado, et al

Questions arise at the end of life concerning how to provide best care for patients with a deep brain stimulation (DBS) device, including its continued benefit or potential complications, yet no published articles provide guidance for hospice providers.  With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to address clinical and ethical challenges in optimizing DBS for patients with Parkinson's Disease nearing the end of life.

The ethics of prioritizing access to palliative care: a qualitative study

American Journal of Hospice & Palliative Medicine, 2019 36(7) p.577-582

Philip, Jennifer; Russell, Bethany; Collins, Anna; Brand, Caroline; Le, Brian; Hudson, Peter; Sundararajan, Vijaya

Semi-structured focus groups and individual interviews were conducted with twenty health professionals working across various disciplines, service types and locations in Victoria, Australia.  This study revealed key ethical decision-making issues associated with prioritizing access to palliative care services. The authors argue that making explicit the processes and influences upon decision-making provides greater transparency that limited resources are allocated in an equitable and reproducible way.

The ‘good death’ and reduced capacity: a literature review

Mortality; Nov 2018; vol. 23 (no. 4); p. 381-395
Read, Simon; MacBride-Stewart, Sara

This review explores the themes that contribute to a good death, specifically examining their applicability to those who lack mental capacity to make their own decisions. Largely the literature on a ‘good death’ builds on an underlying assumption that the dying patient is cognisant and capable of rationalising their death. The authors suggest that specific consideration is required on how to achieve a ‘good death’ for those with reduced capacity.

Managing medicines for patients dying at home: a review of family caregivers' experiences

Journal of Pain and Symptom Management, September 2018
Wilson, Eleanor; Caswell, Glenys; Turner, Nicola; Pollock, Kristian

The aim of the article is to explore the literature focused on family caregivers' experiences of medications management for patients being cared for and dying at home.  The authors concluded that as increasing demands are placed on family caregivers, there remains limited acknowledgement or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, family caregivers need access to 24hrs support and medication reviews to rationalise unnecessary medications.  The ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Fulltext available in Journal of Pain and Symptom Management

Is cancer fundraising fuelling quackery?

BMJ 2018 September 12
Melanie Newman

Crowdfunding sites are helping people with advanced cancer spend thousands of pounds on unproved and alternative treatments. Melanie Newman examines calls to help ensure patients and their donors are not being exploited.

Fulltext available in the BMJ

End-of-life decision-making for people in a minimally conscious state: A review of the application of the mental capacity act 2005

Indian Journal of Palliative Care, 2018 24(3) p 334-344
Curtice, Martin; Two, Jessica; Packer, Jonathan

This article provides an overview of key sections of the Mental Capacity Act applied in end-of-life minimally conscious state cases and reviews seminal cases elucidating how the Act has been applied. It further describes the evolution of how courts have interpreted the doctrine of best interests when considering withholding or withdrawing clinically assisted nutrition and hydration and other life-sustaining treatments.

Fulltext available in Indian Journal of Palliative Care

Difficulties for a practitioner preparing a family for the death of a parent: a narrative inquiry

Mortality, 2018 23(3) p 247-260
Macpherson, Catriona

A practitioner inquiry within an NHS specialist palliative care context used narrative methods to explore difficulties faced by practitioners when assisting a family in the process of preparing a child for the death of a parent.

Palliative sedation for existential suffering: a systematic review of argument-based ethics literature

Journal of Pain and Symptom Management, 2018 55(6) p1577-1590
Rodrigues, Paulo; Crokaert, Jasper; Gastmans, Chris

Using palliative sedation for controlling refractory existential suffering (PS-ES) is controversial. Complicating the debate is that definitions and terminology for existential suffering are unclear, ambiguous, and imprecise, leading to a lack of consensus for clinical practice.  The authors' analysis revealed mind-body dualism, existential suffering, refractoriness, terminal condition, and imminent death as relevant concepts in the ethical debate on PS-ES. The ethical principles of double effect, proportionality, and the four principles of biomedical ethics were used in the debate.

Moral distress at the end of a life: when family and clinicians do not agree on implantable cardioverter-defibrillator deactivation

Journal of Pain and Symptom Management; 2018 55(2) p. 530-534
Steiner, Jill M; Patton, Kristen K; Prutkin, Jordan M; Kirkpatrick, James N

An implantable cardioverter-defibrillator can serve to avoid sudden death but may lead to a prolonged death from heart failure.  Although ethical consensus holds that defibrillator deactivation is legal and ethical, disagreements about life prolongation may complicate decision making. The ethical, technical, and medical complexity involved in the case study presented in this article speaks to the need for clear, prospective communication involving the patient, the patient's family, and members of the care team.

Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK

BMJ Supportive and Palliative Care, 2017 June 7(2) pp 189-196
Kay Phelps; Emma Regen; David Oliver; Chris McDermott

Although clinicians were clear about the legality of withdrawal of treatment in theory, the practice led to ethical and moral uncertainty and mixed feelings, with many respondents experiencing negative reactions from other healthcare professionals. The authors conclude that more guidance, open discussion about the ethical issues and education to support professionals is needed.

Fulltext available in BMJ Supportive and Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge

Palliative care clinicians' knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).

BMJ Supportive & Palliative Care 2017 April 24

Caroline Barry, Anna Spathis, Sarah Treaddell, Sally Carding, Stephen Barclay

The aim of the study was to examine palliative care clinicians' level of knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).  The authors found that clinicians working in palliative care have good levels of knowledge of the DoLS but raised concerns about the difficulty of using them in practice, the relevance of the Safeguards to palliative care and delays in assessments. 

Fulltext available in BMJ Supportive and Palliative Care

Available in print in Arthur Rank Hospice Library, Cambridge

Testamentary capacity and palliative care: helping patients implement estate planning

European Journal of Palliative Care, 2017, 24(2) 58-63
Kieran M Kennedy, Julien O’Riordan, Eileen Mannion and Sharon Beatty

This is the first in a new series offering practical advice to all members of the palliative care team on a range of legal and ethical issues. Here, the authors outline and discuss the appropriate ways of helping patients to implement estate planning by assessing, and maximising, their ability to make or change a valid will.

Available in print in the Arthur Rank Hospice Library, Cambridge

Withholding versus withdrawing treatment: artificial nutrition and hydration as a model

Current opinion in supportive and palliative care; Sep 2016; vol. 10(3) 208-213

Somers, Emma; Grey, Carl; Satkoske, Valerie

This article explores various cultural perspectives of withholding and withdrawing of life-sustaining treatment utilizing a case involving artificial nutrition and hydration (ANH) to guide ethical discussion. Recent literature challenges the evidence base that feeding tubes for people with advanced dementia lead to significant harm. In light of these new findings, the authors reconsider end-of-life decision making that concerns ANH to determine whether these new findings undermine previous ethical arguments and to consider how to best educate and support patients and families during the decision-making process. 

Compromised autonomy: when families pressure patients to change their wishes

Journal of Hospice and Palliative Nursing, Aug 2016, vol. 18, no. 4, p. 284-289

Blackler, Liz

When patients are unduly pressured by their families to make medical decisions that are not in line with previously held values, beliefs, or perspectives, autonomy is compromised. Decision making in the context of family involvement and relational autonomy will be explored along with effects of caregiver stressors, patient/family disagreements, and the nuances of substituted judgment. The article also discusses strategies for best working with and advocating for patients who are experiencing compromised autonomy.

Euthanasia and physician-assisted suicide: a white paper from the European Association for Palliative Care.

Palliative Medicine, Feb 2016, vol. 30, no. 2, p. 104-116

Radbruch, Lukas, Leget, Carlo, Bahr, Patrick, Müller-Busch, Christof, Ellershaw, John, de Conno, Franco, Vanden Berghe, Paul, board members of the EAPC

This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Following a consensus process which sought comments and opinion from experts and nationals organisations this final version was adopted as an official position paper of the European Association for Palliative Care in April 2015.

To access this article click here

Ethics in palliative care

Progress in Palliative Care, 01 June 2015, vol./is. 23/3

This is a special issue exploring ethical issues.  It includes the following:

• Moral luck and the question of autonomy, choice and control in end of life decision making
• Decision-making capacity at the end of life
• Ethical dilemmas of surrogate decision making
• When mediation fails: identifying and working with inappropriate surrogate decision makers
• Palliative sedation: controversies and challenges
• CPR and hospice: incompatible goals, irreconcilable differences

Available in print in Arthur Rank House library, Brookfields Hospital

Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care

Palliative & Supportive Care, April 2015, 13(2):295-303

Guell E;  Ramos A;  Zertuche T;  Pascual A.

The authors found that although the single most common reason for a desire for death or desire for euthansia comment was pain or physical suffering, most of the reasons given were nonphysical.   They conclude that emotional and spiritual issues should be identified and effectively addressed when responding to a desire for death statement in terminally ill cancer patients.

Fulltext available in Palliative & Supportive Care

Log in using your Athens account details or contact the library where it can be downloaded for you

Desire for hastened death: exploring the emotions and the ethics

Current Opinion in Supportive & Palliative Care, March 2015, vol./is. 9/1(64-71)

Branigan M

Studies confirm that DHD is not always a request to die. Clarifying the intention behind the desire and exploring the individual factors and underlying reasons behind the wish have been described. We have a professional responsibility to mindfully explore with the patient the suffering that can be relieved and the suffering that remains.

Full text available in Current Opinion in Supportive and Palliative Care

Palliative sedation therapy: a systematic literature review and critical appraisal of available guidance on indication and decision making

Journal of Palliative Medicine, May 2014, vol./is. 17/5(601-11)

Schildmann E, Schildmann J

Following a review and critical appraisal, the authors found that the guidelines differ considerably on aspects of indication and decision making about PST which are relevant from a clinical as well as ethical perspective. The comparison and critical appraisal can serve as a starting point for the improvement of future PST policies. 

Palliative use of noninvasive ventilation: navigating murky waters

Journal of Palliative Medicine, June 2014, vol./is. 17/6(657-61)

Quill CM, Quill TE

The authors describe the use of NPPV in four patients with advanced disease and preexisting treatment-limiting directives. They discuss some of the ethical dilemmas and unintended consequences that may accompany the use of NPPV in such circumstances and review the benefits and burdens of palliative NPPV.  They conclude with a summary of principles that can be used as a guide to decision making regarding palliative NPPV.