Henry S. Perkins: A guide to psychosocial and spiritual care at the end of life

Theoretical Medicine and Bioethics -     

Decisions at the end of life: Catholic tradition.

Medical decisions regarding end-of-life care have undergone significant changes in recent decades, driven by changes in both medicine and society. Catholic tradition in medical ethics offers clear guidance in many issues, and a moral framework accessible to those who do not share the same faith as well as to members of its faith community. In some areas, a Catholic perspective can be seen clearly and confidently, such as in teachings on the permissibility of suicide and euthanasia. In others, such as withdrawal of nutrition and hydration, the Church does not yet speak with one voice and has not closed out the discussion. Yet, it is not in the teaching on individual issues that a Catholic moral tradition offers the most help and comfort, but in its account of what it means to lead a life in Christ, and to prepare for a Christian death. As in the problem of pain and suffering, it is the spiritual support more than the ethical guidance that helps both patients and physicians bear the unbearable and fathom the unfathomable.     

The right to die at the end of your life

The Missouri case of Nancy Cruzan brings into sharp focus the medical ethics issue of the right to privacy. It also raises the need for definition of life ranging from cellular to personal. What is it about forced feeding that transforms it into an extraordinary means of nonfunctional treatment? There is the question of balancing benefit and cost (whether personal or financial). Currently we are confronted by the problem of balancing human rights violations against efforts to be “helpful” by the use of heroic medical measures, all of this against the background of ever-changing medical technology.     

Palliative-care professionals' experiences of unusual spiritual phenomena at the end of life

Research literature has highlighted unusual phenomena occurring at the end of life. Palliative-care professionals often feel ill-prepared in managing these and in talking to patients and family members about them. This study aimed to explore the meanings and interpretations ascribed to these phenomena by palliative-care professionals. Eight participants were interviewed, and interpretative phenomenological analysis used to identify themes within their accounts. Four themes emerged from the analysis: (1) Who are we to say what's out there?: a connection with something beyond what can be seen; (2) It opened up conversations: the experience of talking about unusual experiences; (3) It knocked me sideways: managing the emotional impact of these experiences; and (4) The fact that she was so accepting made it easier: the value of acceptance in relation to unusual experiences. These findings are discussed within the context of existing literature and implications for palliative-care professionals are discussed.     

Care versus treatment at the end of life for profoundly disabled persons

Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population.     

Kathleen Benton and Renzo Pegoraro (ed.): Finding dignity at the end of life: A spiritual reflection on palliative care

Theoretical Medicine and Bioethics -     

Mother versus stranger: a triadic situation of imitation at the end of the first year of life

This study presents two experiments investigating 8‐ and 12‐month‐old infants' imitative behaviour. Seventy‐two 8‐month‐olds and seventy‐two 12‐month‐olds were observed in a triadic situation which included their mother and a stranger. Depending on the condition, either the mother or the stranger acted as the demonstrator and either stayed close or withdrew after the demonstration, during the response period. In addition to imitative acts, visual exploration and smiles addressed, respectively, to each partner were computed. Results showed that at both ages, neither the familiarity nor the position of the partner has an effect on the number of target gestures that are imitated. At 12 months, infants looked and smiled more at the stranger when he demonstrated target actions but no difference was found when the mother acted as demonstrator. Moreover, 12‐month‐old infants looked more at the demonstrating partner immediately after their first imitation. At 8 months, infants paid more attention to the stranger in all conditions except when the mother performed the target actions and moved away, a pattern that suggests a referencing to the mother. Results from the gaze and smile variables suggest that with age different motivations (social contact, exploration of objects) induce imitation. Copyright © 2003 John Wiley & Sons, Ltd.     

Reconstructing the professional at the end of modernity

Faced with incidents of sexual misconduct within the professional ministry, some would have us return to a construct of the professional from the past and some would reject the construct altogether. Both those approaches may perpetuate systemic factors that contribute to injustice. This article explores the history of the professional construct and its challenges, and offers a reconstruction that could support a more just relationship between ministers and members of congregations.     

Pain Control in the African Context: the Ugandan introduction of affordable morphine to relieve suffering at the end of life

Dr Anne Merriman is the founder of Hospice Africa and Hospice Africa Uganda. She is presently Director of Policy and International Programmes. Here she tells the story of how HAU was founded. Dr Richard Harding is an academic researcher working on palliative care in Sub-Saharan Africa. This paper described Dr Merriman's experience in pioneering palliative care provision. In particular it examines the steps to achieving wider availability of opioids for pain management for those with far advanced disease. Hospice Africa Uganda has been a model facility in achieving high quality clinical care embedded in a strategy of advocacy and education, using a multifaceted approach that has addressed logistical, policy and legislative barriers. Until 1990 control of severe pain in Sub-Saharan Africa was non-existent except in Zimbabwe and S Africa. Oral affordable morphine was brought to Kenya through Nairobi Hospice that year, and to Uganda through Hospice Africa Uganda in 1993. This paper offers an example of a highly effective and cost efficient model of care that has transformed the ability to humanely manage the problems of those with terminal illness, and to offer a culturally appropriate "good death". Thus it is now possible to complete the ethical circle of care in resource poor circumstances.