Journal: Journal of pain and symptom management
Compassion is frequently referenced as a hallmark of quality care by patients, health care providers, health care administrators and policy makers. Despite its putative centrality, including its institution in recent health care reform, an empirical understanding based on the perspectives of patients, the recipients of compassion, is lacking–making compassion one of the most referenced aspects of quality care that we know little about.
CONTEXT: Sedation at the end of life, regardless of the nomenclature, is an increasingly debated practice at both clinical and bioethical levels. However, little is known about the characteristics and trends in scientific publications in this field of study. OBJECTIVES: This article presents a bibliometric analysis of the scientific publications on continuous sedation until death. METHODS: Four electronic databases (MEDLINE, PubMed, Embase, and PsycINFO(®)) were searched for the indexed material published between 1945 and 2011. This search resulted in bibliographic data of 273 published outputs that were analyzed using bibliometric techniques. RESULTS: Data revealed a trend of increased scientific publication from the early 1990s. Published outputs, diverse in type (comments/letters, articles, reviews, case reports, editorials), were widely distributed across 94 journals of varying scientific disciplines (medicine, nursing, palliative care, law, ethics). Most journals (72.3%) were classified under Medical and Health Sciences, with the Journal of Pain and Symptom Management identified as the major journal in the field covering 12.1% of the total publications. Empirical research articles, mostly of a quantitative design, originated from 17 countries. Although Japan and The Netherlands were found to be the leaders in research article productivity, it was the U.K. and the U.S. that ranked top in terms of the quantity of published outputs. CONCLUSION: This is the first bibliometric analysis on continuous sedation until death that can be used to inform future studies. Further research is needed to refine controversies on terminology and ethical acceptability of the practice, as well as conditions and modalities of its use.
There is a lack of longitudinal studies investigating fatigue from before cancer treatment to long after successful cancer treatment.
Cutaneous T-cell lymphoma (CTCL), although rare, is associated with a significant symptom burden. Pruritus appears to be one of the most prominent and disturbing symptoms.
CONTEXT: The terms “palliative sedation” and “terminal sedation” have been used to refer to both proportionate palliative sedation, in which unconsciousness is a foreseen but an unintended side effect, and palliative sedation to unconsciousness, in which physicians aim to make their patients unconscious until death. It has not been clear to what extent palliative sedation to unconsciousness is accepted and practiced by U.S. physicians. OBJECTIVES: To investigate U.S. physician acceptance and practice of palliative sedation to unconsciousness and to identify predictors of that practice. METHODS: In 2010, a survey was mailed to 2016 practicing U.S. physicians. Criterion measures included self-reported practice of palliative sedation to unconsciousness until death and physician endorsement of such sedation for a hypothetical patient with existential suffering at the end of life. RESULTS: Of the 1880 eligible physicians, 1156 responded to the survey (62%). One in ten (141/1156) physicians had sedated a patient in the previous 12 months with the specific intention of making the patient unconscious until death, and two of three physicians opposed sedation to unconsciousness for existential suffering, both in principle (68%, n = 773) and in the case of a hypothetical dying patient (72%, n = 831). Eighty-five percent (n = 973) of physicians agreed that unconsciousness is an acceptable side effect of palliative sedation but should not be directly intended. CONCLUSION: Although there is a widespread support among U.S. physicians for proportionate palliative sedation, intentionally sedating dying patients to unconsciousness until death is neither the norm in clinical practice nor broadly supported for the treatment of primarily existential suffering.
Spiritual assessment tools and interventions based on holistic approaches are needed to promote healing. Such tools must be adapted to the wide cultural backgrounds of contemporary Western society.
Placebo and nocebo effects are known to contribute significantly to the response to symptom control, including analgesia. Clinical trial methodologies using placebo controls are designed to identify the magnitude of these effects in the research context. An adequately powered, randomized, double-blind, placebo-controlled trial of ketamine in cancer pain has recently been reported, which demonstrated no net clinical benefit for ketamine over and above that of placebo. Rates of placebo and nocebo responses were high. The setting of a clinical trial provides an opportunity to quantify the nonpharmacologic aspects of patient responses to analgesia, raising important clinical and ethical issues for practice. The findings of the ketamine study are analyzed in the context of a methodological discussion of placebo and nocebo effects, what is known about the biological and psychological bases for each of these, and their implications for a clinical trial design in the palliative care setting. Along with reviewing the use of ketamine after this negative trial, clinicians need to remain aware of the strength and significance of both placebo and nocebo responses in their own practices and the biopsychosocial complexity of why and how patients actually respond to pain management strategies. The results of this study strongly reinforce the importance of the therapeutic relationship and the context of care.
In 2014, 1.5 million people died of tuberculosis (TB) worldwide including 400,000 co-infected with HIV. TB remains a major cause of death and suffering globally, in spite of the fact that it is supposed to be a curable disease. Drug resistant forms of TB have developed as a result of poor treatment compliance including multi-drug and extreme drug resistant forms that take longer to treat and have higher likelihoods of treatment failure. In 2010, at the initiation of the TB community, a partnership was formed between the WHO Stop TB Program, the Worldwide Hospice Palliative Care Alliance, and the Open Society Foundation’s International Palliative Care Initiative (OSF/IPCI) to explore how to improve the ability of TB professionals to deliver palliative care to their patients. This article describes the progress made in the last six years and the barriers remaining. A training curriculum was developed, courses conducted at major TB conferences (Union Lung Health), several publications produced, model programs identified, and comprehensive clinical guidelines developed. There remain significant barriers including lack of awareness and a major need for resources to deliver palliative care education to the TB workforce and the palliative care community to realize WHO’s goal of zero suffering for TB patients.
Black patients are more likely than white patients to die in the intensive care unit with life-sustaining treatments. Differences in patient/surrogate-provider communication may contribute to this phenomenon.
In the United States, palliative care programs improve access to hospice through enhanced communication and efficiencies in hospice eligibility review and enrollment. For community-based programs, this task may begin with telephone contact.