Journal of palliative medicine
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In this single-site study, we evaluated the feasibility of a parent-clinician communication intervention designed to: identify parents' rationale for the phase I, do-not-resuscitate (DNR), or terminal care decision made on behalf of their child with incurable cancer; identify their definition of being a good parent to their ill child; and provide this information to the child's clinicians in time to be of use in the family's care. ⋯ The communication intervention was feasible within hours of decision making, was acceptable and beneficial without harm to participating parents, and was acceptable and useful to clinicians in their care of families.
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Achieving a good death is the ultimate goal of palliative medicine. Yet, very few studies have investigated factors affecting improvement in quality of dying. We therefore conducted a study to evaluate these factors in terminally ill Taiwanese cancer patients treated in a multidisciplinary palliative care unit. ⋯ In this study in a Taiwanese palliative care unit; we found that late referral to the unit and low physician-assessed autonomy were key factors negatively affecting quality of dying. Earlier truth-tellling and end-of-life care discussions between physicians and patients might improve the quality of dying in this population.
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Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections. ⋯ Ethical concerns have led to the development of compassionate and vigilant strategies designed to balance the potential for risk of harm with the need to advance the science of palliative and end-of-life care. These strategies can be used by investigators to address ethical concerns and minimize barriers to the development of palliative and end-of-life care science.
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In palliative care, the witnessing of unrelieved (refractory) suffering takes its toll on all concerned; however, the effect on experienced palliative clinicians of witnessing such suffering has largely been unexplored. The aim of this study was to examine health care professionals' (nurses, doctors, and allied health workers) experiences of working with a patient's refractory suffering, together with their clinical management strategies. A qualitative research design involving semistructured interviews and an online questionnaire was used to collect the data. ⋯ In reviewing their experiences, they identified within an overarching theme of negotiating uncertain terrain four subthemes: Changing Approach from "Fixing" to "Being With," Maintaining Perspective, Negotiating and Maintaining Boundaries, and Living the Paradoxes. This study highlights that dealing with patients' refractory suffering involves clinicians moving into uncertain and unexplored territory. For them to work effectively in this terrain the clinicians need wisdom, courage, and a commitment to journeying alongside the suffering person.