A public health approach to palliative care in the response to drug resistant TB: an ethnographic study in Bengaluru,India

Background

The treatment of Multidrug-Resistant Tuberculosis represents one of the most significant challenges to global health. Despite guidance on improving treatment outcomes, there is little focus on how to support individuals in their suffering. Palliative care is therefore proposed as a necessary component in the global strategy to fight Tuberculosis. We aim to describe the informal resources and networks available to persons affected by Multidrug-Resistant Tuberculosis, how they are accessed and how they are integrated into everyday lives.

Methods

In-depth ethnographic research was conducted in Bengaluru, India. Informal interactions and observations were recorded across a range of palliative care and tuberculosis treatment providers over a month-long period. In addition, ten individuals with Multidrug-Resistant Tuberculosis were asked for in-depth interviews, and five agreed.

Results

Multidrug-Resistant Tuberculosis caused a dynamic chain of events that transgress through physical and psychological domains to cause human suffering. Participants utilised support from their family and friends to build a network of care that was of therapeutic benefit. Informal care networks were similar to the holistic model of care practice by specialist palliative care services and represent an underused resource with enormous potential.

Conclusion

Patient suffering is poorly addressed in current Tuberculosis treatment programmes. A community-based palliative care approach may extend peoples’ support networks, helping to alleviate suffering. Further research on existing support structures and integration of these services into Tuberculosis control programmes is required.

     

Clinical trials in palliative care: an ethical evaluation

On first sight, clinical trials do not seem to fit well within the concept of palliative care. In palliative care, the needs and wishes of the patient set the norm while participation in experimental trials is potentially harmful for the patient. The dilemma seems hard to solve as optimal care for the dying and improvement of treatment for future patients are both imperative. Yet, the one seems to exclude the other. However, on closer examination it becomes less evident that clinical trials in palliative care confront us with an unsolvable dilemma. Some patients' lives may gain meaning through participation in trials out of solidarity with future patients. In order to clarify this, the notions of authenticity and hope can be illuminative.     

Impact of specialized pediatric palliative care programs on communication and decision-making

ObjectiveTo summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions.MethodsOur search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018.ResultsWe reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators. Study quality was poor in 58% of included papers. SPPC programs improved communication and decision-making between families and healthcare professionals (HCPs), within and between families, and among HCPs.ConclusionSPPC programs generally support and improve communication and decision-making for children with life-threatening conditions, their families and associated HCPs. Families referred to an SPPC program had more discussions with HCPs on a broad variety of topics. However, data on communication with children, siblings, and other family members was scarce and of poor quality.Practice implicationsMore research on SPPC program efficacy is needed from the perspective of the ill child, as well as about barriers to end-of-life discussions and the specific aspects of SPPC programs responsible for improving outcomes.     

Death wishes and explicit requests for euthanasia in a palliative care hospital: an analysis of patients files

Background

In the current public debate in France about end-of-life and legalization of euthanasia, palliative care is considered as a suitable answer or an alternative or even a supplement to euthanasia. The debate is based on opinion surveys, partly because there is a lack of objective data about the incidence of euthanasia requests (ER) in palliative care settings. The aim of this study was to collect, classify and quantify the expressions of wishes to die (WD), based on computerized files for patients admitted to an 81-bed palliative care hospital (PCH) in Paris during 2010–2011.

Methods

Two researchers analyzed the carers’ notes extracted on the basis of containing the words “wish to die”, “euthanasia” or any expressions relating to death. Notes related to WD and the corresponding patients were then classified in the order: ER, suicidal thought (ST) and other wish to die (OWD). Repeated ER were qualitatively analyzed according to a grid.

Results

We found that 195 of the 2157 patients (9%) expressed a WD: 61 (3%) expressed an ER; 15 (1%) described ST and 119 (6%) expressed an OWD without requiring acting. The WD group was predominantly female, stayed longer in the hospital (median 24 vs. 13 days), and consumed more anxiolytics and antidepressants. None of age, disease or marital status was associated with ER. More women and widows expressed an OWD. Twenty-six ER patients also expressed an OWD and two a ST. Six patients repeated their ER: all had poorly controlled symptoms with repercussions for their mental state.

Conclusion

Our data show the existence of various expressions of WD with a low incidence of ER in a French PCH. The observation of WD including ER is suggestive of good communication between the patients and the care teams. Independent of the changeability of expressions of WD, their very existence should lead to a consideration of the dynamic changes in these WD, and to care staff paying additional attention to the individual, their suffering and the context.

     

Persuasive communication in medical decision-making during consultations with patients with limited health literacy in hospital-based palliative care

ObjectiveBoth patients in the palliative phase of their disease and patients with limited health literacy (LHL) have an increased risk of being influenced by healthcare providers (HCPs) when making decisions. This study aims to explore to what extent persuasive communication occurs during shared decision-making (SDM) by (1) providing an overview of persuasive communication behaviours relevant for medical decision-making and (2) exemplifying these using real-life outpatient consultations.MethodsAn exploratory qualitative design was applied: (1) brief literature review; (2) analysis of verbatim extracts from outpatient consultations and stimulated recall sessions with HCPs; and (3) stakeholder meetings.Results24 different persuasive communication behaviours were identified, which can be divided in seven categories: biased presentation of information, authoritative framing, probability framing, illusion of decisional control, normative framing, making assumptions and using emotions or feelings.ConclusionsPersuasive communication is multi-faceted in outpatient consultations. Although undesirable, it may prove useful in specific situations making it necessary to study the phenomenon more in depth and deepen our understanding of its mechanisms and impact.Practice implicationsAwareness among HCPs about the use of persuasive communication needs to be created through training and education. Also, HCPs need help in providing balanced information.     

Crack and AIDS: an ethnographic impression

To date, there are no scientific studies describing the "crack" epidemic, yet the observations reported here suggest that understanding the crack epidemic is urgent. As a cheap, highly addictive drug, crack increases risk for human immunodeficiency virus infection and could have devastating implications for many communities around the country.     

The moral discourse of HIV providers within their organizational context: An ethnographic case study

Objective

Providers make judgments to inform treatment planning, especially when adherence is crucial, as in HIV. We examined the extent these judgments may become intertwined with moral ones, extraneous to patient care, and how these in turn are situated within specific organizational contexts.

Living on borrowed time: experiences in palliative care

OBJECTIVE: To gain insight into the experiences of a palliative care patient and her husband who were living on borrowed time. METHODS: A qualitative single case design was used. Systematic content analysis of the interview data, obtained in an in-depth semi-structured interview, from the husband and wife was conducted to extract themes relating to living on borrowed time. RESULTS: Three themes were identified: shifts in the interpretation of physical signs and symptoms, altered view of the future and altered choices and priorities. CONCLUSION: The identified themes lead to a better understanding of the phenomenon of living on borrowed time. Yet, refinement of, and variation within the themes still need to be studied in order to get more grips on the themes and to be better able to help patients to integrate the 'new reality'. PRACTICE IMPLICATIONS: Our findings can be used to support professionals in the practical application of care when their patients need to integrate the 'new reality' and seek new equilibrium, e.g. converted into a conversational guide, or used for educational purposes.     

Sedation in palliative care - a critical analysis of 7 years experience

BACKGROUND: The administration of sedatives in terminally ill patients becomes an increasingly feasible medical option in end-of-life care. However, sedation for intractable distress has raised considerable medical and ethical concerns. In our study we provide a critical analysis of seven years experience with the application of sedation in the final phase of life in our palliative care unit. METHODS: Medical records of 548 patients, who died in the Palliative Care Unit of GK Havelhoehe between 1995-2002, were retrospectively analysed with regard to sedation in the last 48 hrs of life. The parameters of investigation included indication, choice and kind of sedation, prevalence of intolerable symptoms, patients' requests for sedation, state of consciousness and communication abilities during sedation. Critical evaluation included a comparison of the period between 1995-1999 and 2000-2002. RESULTS: 14.6% (n = 80) of the patients in palliative care had sedation given by the intravenous route in the last 48 hrs of their life according to internal guidelines. The annual frequency to apply sedation increased continuously from 7% in 1995 to 19% in 2002. Main indications shifted from refractory control of physical symptoms (dyspnoea, gastrointestinal, pain, bleeding and agitated delirium) to more psychological distress (panic-stricken fear, severe depression, refractory insomnia and other forms of affective decompensation). Patients' and relatives' requests for sedation in the final phase were significantly more frequent during the period 2000-2002. CONCLUSION: Sedation in the terminal or final phase of life plays an increasing role in the management of intractable physical and psychological distress. Ethical concerns are raised by patients' requests and needs on the one hand, and the physicians' self-understanding on the other hand. Hence, ethically acceptable criteria and guidelines for the decision making are needed with special regard to the nature of refractory and intolerable symptoms, patients' informed consent and personal needs, the goals and aims of medical sedation in end-of-life care.     

The temple vision in palliative care

Music-thanatology draws as much historical inspiration from the Asclepian ideal as it does from the practice of Cluniac monastic medicine. In both traditions, the patient initiates the social drama and is a most active agent in the healing process. In both traditions, the patient has the central voice and is listened to and responded to by the caregivers and clinicians, who facilitate and support in the spirit of service rather than direct/control. In both traditions, we may find death-bed healing without curing and be struck by the urgent, transcendental role of Beauty, as expressed in nature (human and elemental), the arts, architecture, and music. Clearly, our guest author envisions a profound end-of-life music-thanatology clinical practice in which the well-known, empirical Hippocratic and the lesser known, sacred Asclepian are integrated into the ideals of monastic medicine. In so doing, not only are pain and suffering uniquely met, but a blessed, peace-filled or conscious transitus may occur, and each death-bed setting has the potential to become nothing less than a sanctuary for completion.     

Sedation in palliative care – a critical analysis of 7 years experience

Background  

The administration of sedatives in terminally ill patients becomes an increasingly feasible medical option in end-of-life care. However, sedation for intractable distress has raised considerable medical and ethical concerns. In our study we provide a critical analysis of seven years experience with the application of sedation in the final phase of life in our palliative care unit.     

A comparative analysis of computer based hospice palliative care datasets in Canada

Background

To analyze how seven Canadian hospice palliative care (HPC) centres and one national surveillance dataset compare with respect to the collection of forty data elements. Research and service delivery implications of the findings are discussed.

Methods

The data sources consisted of data element names and their definitions collected in a computer based format from seven HPC centres and one surveillance dataset. The data elements were structured into five themes: demographic, patient death, support, contact or informal caregiver; program/consultations/service request, and clinical. Each theme contains a number of data elements with a total of 40 elements included in the analysis. Comparative analysis was done on the data elements to compare their names and definitions.

Results

Much variation exists in data collection around HPC delivery. Such variation prevents any timely and meaningful comparison of service and care delivery across HPC centres. Patient death data, service/program data and clinical data is particularly varied.

Conclusion

Developing a common minimum data set is a logical starting point to help overcome data variations between care centres. Greater coordination is needed between care centres and the development of national standards and policies. Moving towards electronic data collection would help facilitate common policy and practice norms.     

Delay in commencement of palliative care service episodes provided to Indigenous and non-Indigenous patients: cross-sectional analysis of an Australian multi-jurisdictional dataset

Background

Rapid effective responsiveness to patient needs is pivotal to high quality palliative care. Aboriginal and Torres Strait Islander (Indigenous) people are susceptible to life-limiting illnesses at younger ages than other Australians and experience inequity of health service provision. The Palliative Care Outcomes Collaboration collects Australia-wide health service data on patient care, and has established performance benchmarks for specialist palliative care services. We investigated whether the benchmark for timely commencement of palliative care episodes (occurrence of delay >1?day after being designated ‘ready for care’ in <10% instances) is being met for Indigenous Australians in participating services. Additionally, we investigated the association between identification as Indigenous and delay.

Methods

Using multi-jurisdictional Palliative Care Outcomes Collaboration data, this cross-sectional analytical study investigated all episodes of care (n =?84,238) provided to patients ≥18?years (n =?61,073: Indigenous n =?645) in hospital and community settings commenced and completed during the period 01/07/2013–30/06/2015. Proportions of episodes resulting in delay were determined. Crude and adjusted odds of delay among Indigenous compared with non-Indigenous patients were investigated using multiple logistic regression, with missing data handled by multiple imputation.

Results

The benchmark was met for both Indigenous and non-Indigenous patients (delay in 8.3 and 8.4% episodes respectively). However, the likelihood of delay was modestly higher in episodes provided to Indigenous than non-Indigenous patients (adjusted odds ratio [aOR], 1.41; 95% confidence interval [CI] 1.07–1.86). Excess delay among Indigenous patients was accentuated in first episodes (aOR, 1.53; 95% CI 1.14–2.06), in patients aged <?65?years (aOR, 1.66; 95% CI 1.14–2.41), and among those residing in Inner Regional areas (aOR, 1.97; 95% CI 1.19–3.28), and also approached significance among those in outer regional, remote and very remote areas collectively (aOR, 1.72; CI 0.97–3.05).

Conclusions

Although the timeliness benchmark is being met for Indigenous Australians in palliative care, they may experience delayed initiation of care episodes, particularly if younger, and especially at first encounter with a service. Qualitative research is required to explore determinants of delay in initiating palliative care episodes. The timeliness of initial referral for specialist palliative care in this population remains to be determined.