Addressing obstacles to the inclusion of palliative care in humanitarian health projects: a qualitative study of humanitarian health professionals’ and policy makers’ perceptions

© 2020, The Author(s). Background: Humanitarian non-governmental organizations provide assistance to communities affected by war, disaster and epidemic. A primary focus of healthcare provision by these organizations is saving lives; however, curative care will not be sufficient, appropriate, or available for some patients. In these instances, palliative care approaches to ease suffering and promote dignity are needed. Though several recent initiatives have increased the probability of palliative care being included in humanitarian healthcare response, palliative care remains minimally integrated in humanitarian health projects. Methods: We conducted a qualitative study using interpretive description methodology to investigate humanitarian policy-makers’ and health care professionals’ experiences and perceptions of palliative care during humanitarian crises. In this article, we report on the analysis of in-depth interviews with 24 participants related to their perceptions of obstacles to providing palliative care in humanitarian crises, and opportunities for overcoming these obstacles. Among the participants, 23 had experience as humanitarian health professionals, and 12 had experience with policy development and organizational decision-making. Results: Participants discussed various obstacles to the provision of palliative care in humanitarian crises. More prominent obstacles were linked to the life-saving ethos of humanitarian organizations, priority setting of scarce resources, institutional and donor funding, availability of guidance and expertise in palliative care, access to medication, and cultural specificity around death and dying. Less prominent obstacles related to continuity of care after project closure, equity, security concerns, and terminology. Conclusion: Opportunities exist for overcoming the obstacles to providing palliative care in humanitarian crises. Doing so is necessary to ensure that humanitarian healthcare can fulfill its objectives not only of saving lives, but also of alleviating suffering and promoting dignity of individuals who are ill or injured during a humanitarian crises, including persons who are dying or likely to die

A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda

© 2021, The Author(s). Background: This case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study’s main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational research partnerships, which is the focus of this case analysis. Discussion: There exist ongoing challenges for international collaborative research in humanitarian conflict-induced settings. Research partnerships were crucial for connecting with key stakeholders associated with the full study (e.g., refugees with life limiting illness, local healthcare providers, aid organization representatives). While important relationships were established, obstacles limited our abilities to fully attain the type of mutual partnership we aimed for. Unique challenges faced during the research included: (a) building, nurturing and sustaining respectful and equitable research partnerships between collaborators in contexts of cultural difference and global inequality; (b) appropriate ethics review and challenges of responding to local decision-maker’s research needs; and (c) equity and fairness towards vulnerable populations. Research strategies were adapted and applied to respond to these challenges with a specific focus on (d) research rewards and restitution. Conclusions: This case analysis sheds light on the importance of understanding cultural norms in all research roles, building relationships with decision makers, and developing teams that include researchers from within humanitarian crisis settings to ensure that mutually beneficial research outcomes are ethical as well as culturally and contextually relevant

Compact High-Redshift Galaxies Are the Cores of the Most Massive Present-Day Spheroids

Observations suggest that effective radii of high-z massive spheroids are as much as a factor ~6 smaller than low-z galaxies of comparable mass. Given the apparent absence of low-z counterparts, this has often been interpreted as indicating that the high density, compact red galaxies must be 'puffed up' by some mechanism. We compare the ensemble of high-z observations with large samples of well-observed low-z ellipticals. At the same physical radii, the stellar surface mass densities of low and high-z systems are comparable. Moreover, the abundance of high surface density material at low redshift is comparable to or larger than that observed at z>1-2, consistent with the continuous buildup of spheroids over this time. The entire population of compact, high-z red galaxies may be the progenitors of the high-density cores of present-day ellipticals, with no need for a decrease in stellar density from z=2 to z=0. The primary difference between low and high-z systems is thus the observed low-density material at large radii in low-z spheroids (rather than the high-density material in high-z spheroids). Such low-density material may either (1) assemble at z2. Mock observations of low-z massive systems show that the high-z observations do not yet probe sufficiently low surface brightness material to detect the low surface density 'wings' (if present). Thus, if the high-z galaxies resemble the most massive systems today, their inferred effective radii could be under-estimated by factors ~2-4. This difference arises because massive systems at low redshift are not well-fit by single Sersic profiles. We discuss implications of our results for physical models of galaxy evolution.Comment: 14 pages, 6 figures, accepted to MNRAS (revised to match published version

A simple model for AGN feedback in nearby early-type galaxies

Recent work indicates that star-forming early-type galaxies (ETGs) residing in the blue cloud migrate rapidly to the red sequence within around a Gyr, passing through several phases of increasingly strong AGN activity in the process (Schawinski et al. 2007, MNRAS, 382, 1415; S07 hereafter). We show that natural depletion of the gas reservoir through star formation (i.e. in the absence of any feedback from the AGN) induces a blue-to-red reddening rate that is several factors lower than that observed in S07. This is because the gas depletion rate due to star formation alone is too slow, implying that another process needs to be invoked to remove gas from the system and accelerate the reddening rate. We develop a simple phenomenological model, in which a fraction of the AGN's luminosity couples to the gas reservoir over a certain 'feedback timescale' and removes part of the gas mass from the galaxy, while the remaining gas continues to contribute to star formation. We use the model to investigate scenarios which yield migration times consistent with the results of S07. We find that acceptable models have feedback timescales <0.2 Gyrs. The mass fraction in young stars in the remnants is <5% and the residual gas fractions are less than 0.6%, in good agreement with the recent literature. At least half of the initial gas reservoir is removed as the galaxies evolve from the blue cloud to the red sequence. If we restrict ourselves to feedback timescales similar to the typical duty cycles of local AGN (a few hundred Myrs) then a few tenths of a percent of the luminosity of an early-type Seyfert (10^11 LSun) must couple to the gas reservoir in order to produce migration times that are consistent with the observations.Comment: MNRAS in press (minor revisions to version 1

Discriminating Between the Physical Processes that Drive Spheroid Size Evolution

Massive galaxies at high-z have smaller effective radii than those today, but similar central densities. Their size growth therefore relates primarily to the evolving abundance of low-density material. Various models have been proposed to explain this evolution, which have different implications for galaxy, star, and BH formation. We compile observations of spheroid properties as a function of redshift and use them to test proposed models. Evolution in progenitor gas-richness with redshift gives rise to initial formation of smaller spheroids at high-z. These systems can then evolve in apparent or physical size via several channels: (1) equal-density 'dry' mergers, (2) later major or minor 'dry' mergers with less-dense galaxies, (3) adiabatic expansion, (4) evolution in stellar populations & mass-to-light-ratio gradients, (5) age-dependent bias in stellar mass estimators, (6) observational fitting/selection effects. If any one of these is tuned to explain observed size evolution, they make distinct predictions for evolution in other galaxy properties. Only model (2) is consistent with observations as a dominant effect. It is the only model which allows for an increase in M_BH/M_bulge with redshift. Still, the amount of merging needed is larger than that observed or predicted. We therefore compare cosmologically motivated simulations, in which all these effects occur, & show they are consistent with all the observational constraints. Effect (2), which builds up an extended low-density envelope, does dominate the evolution, but effects 1,3,4, & 6 each contribute ~20% to the size evolution (a net factor ~2). This naturally also predicts evolution in M_BH-sigma similar to that observed.Comment: 19 pages, 7 figures. accepted to MNRAS (matches accepted version

Can Minor Merging Account for the Size Growth of Quiescent Galaxies? New Results from the CANDELS Survey

The presence of extremely compact galaxies at z~2 and their subsequent growth in physical size has been the cause of much puzzlement. We revisit the question using deep infrared Wide Field Camera 3 data to probe the rest-frame optical structure of 935 host galaxies selected with 0.4 10^10.7 Msol using optical and near-infrared photometry in the UKIRT Ultra Deep Survey and GOODS-South fields of the CANDELS survey. At each redshift, the most compact sources are those with little or no star formation, and we find that the mean size of these systems grows by a factor of 3.5 +- 0.3 over this redshift interval. The new data are sufficiently deep to enable us to identify companions to these hosts whose stellar masses are ten times smaller, while still yielding suitably accurate photometric redshifts to define a likely physical association. By searching for faint companions around 404 quiescent hosts within a projected physical annulus 10 < R < 30 kpc/h, we estimate the minor merger rate over the redshift range 0.4 < z < 2. After correcting for contamination from projected pairs, we find that 13-18% of quiescent hosts have likely physical companions with stellar mass ratios of 0.1 or greater. Mergers of these companions will typically increase the host mass by 6+-2% per merger timescale. We estimate the minimum growth rate necessary to explain the declining abundance of compact galaxies. Using a simple model of merging motivated by recent numerical simulations, we then assess whether mergers of the faint companions with their hosts are sufficient to explain this minimal rate. We find that mergers with mass ratios > 0.1 may explain most of the size evolution observed at z >~ 1 if a relatively short merger timescale is assumed, but the rapid growth seen at higher redshift likely requires additional physical processes.Comment: Accepted to ApJ. Updated following referee report, with expanded comparisons to published mass-size and pair fraction measurements (Figs. 4 and 9

Moral experiences of humanitarian health professionals caring for patients who are dying or likely to die in a humanitarian crisis

Abstract Wars, disasters, and epidemics affect millions of individuals every year. International non-governmental organizations respond to many of these crises and provide healthcare in settings ranging from a field hospital deployed after an earthquake, to a health clinic in a longstanding refugee camp, to a treatment center during an infectious disease outbreak. The primary focus of these activities is to save lives. However, inevitably, many patients cannot be saved. We undertook an interpretive description study to investigate humanitarian policy-maker and care providers’ experiences and perceptions of palliative care during humanitarian crises. In this paper, we report on interviews with 23 health professionals, 11 of whom also had experience as policy-makers within a humanitarian organization. We use the concept of moral experience as an analytic lens: participants’ experiences of values that they held to be important being realized or thwarted as they responded to the needs of patients who were dying or likely to die. We identified five themes related to participants’ moral experiences, all of which relate to values of compassion in the provision of care, and justice in accessing it. (1) Participants described intervening to ease the suffering of dying patients as an inherent aspect of humanitarianism and their duty as health professionals. (2) Participants also expressed that upholding dignity was of critical importance, stemming from a recognition of shared humanity and as an act of respect. (3) Since humanitarian action is provided in situations of scarcity, prioritization is inescapable. Acknowledging the primacy of curative care in emergencies, participants also emphasized the importance of ensuring that care for the dying was attended to, including during triage. (4) Participants reported working within and pushing against systemic constraints such as legal or logistical barriers to opioids, lack of guidelines, and conflicting views with colleagues. (5) Given the stakes involved, participants felt a heavy weight of responsibility and described their challenges in carrying it. These findings illuminate experiences responding to patients who are dying or likely to die, and how these connect with the values of humanitarian health professionals, sometimes resulting in dissonance between values and actions. They also point to the need to make more space for palliative, alongside curative, approaches to care in situations of humanitarian crises, ideally by further integrating them

Palliative care in humanitarian crises: a review of the literature

Abstract This paper presents findings from a systematic review of the literature (2005–2017) on palliative care in humanitarian crises (e.g., disasters, armed conflicts, epidemics). This review set out to describe palliative care needs, practices, barriers, and recommendations in humanitarian crisis settings. It contributes to current discussions within the field of humanitarian healthcare aimed at clarifying whether or not and how best to respond to palliative care needs in humanitarian crises. Analysis of 95 peer-reviewed and gray literature documents reveal a scarcity of data on palliative care needs and interventions provided in crises, challenges of care provision particularly due to inadequate pain relief resources and guidelines, a lack of consensus on the ethics of providing or limiting palliative care as part of humanitarian healthcare response, and the importance of contextually appropriate care. These findings suggest that more research and open discussion on palliative care in humanitarian crises are needed. This review contributes to defining palliative care needs in humanitarian crises, building consensus on humanitarian healthcare organizations’ ethical responsibilities towards individuals and families with palliative needs, and developing realistic and context-appropriate policies and guidelines