National Council for Palliative Care

There is very little documented evidence on the experiences of healthcare professionals caring for their own family outside of their role. This article explores the differences in the care received as the author shares her perspectives of caring for her mother, who was diagnosed with dementia. The author reflects on the care received and the impact of communication, as well as the ethical limitations of caring for a member of her own family. Significant references to communication barriers already exist within the literature, relating to end-of-life conversations. The presence of a relative who has a healthcare background may further impact the communication approach of healthcare professionals. Communication barriers also influence conversations about future care needs and preferences, including access to advance care planning, specialist palliative care and anticipatory medications, which may be difficult to access for patients with a non-cancer diagnosis such as dementia. While they may be challenging, effective and empathic end-of-life conversations open up patient choices, prevent inappropriate palliative care and may even impact the bereavement process.

Perinatal palliative care (PPC) addresses the complex needs of families facing life-limiting fetal or neonatal conditions through an interdisciplinary, family-centered approach. Despite growing recognition of its importance, there is a lack of systematically defined research priorities to guide the development of evidence-based PPC practices. To identify and establish research priorities for perinatal palliative care (PPC) using a Delphi method with international experts and parents who experienced perinatal loss. This Delphi study involved three Delphi survey rounds with experts and bereaved parents. Participants provided and refined research priorities across rounds. In the first round, participants provided suggestions for research topics spontaneously. Topics were analyzed using principles of thematic analysis and further rated and ranked based on their importance in two additional rounds of consensual scoring. Consensus was defined as a score above the mean from at least 75% of respondents. A total of 125 experts and 10 parents who experienced a perinatal loss were invited to participate in the study. Response rate in the three rounds was 24, 31, and 34%. A total of 187 research priorities were initially suggested, resulting in 34 topics reaching consensus. Final rankings and priority topics were categorized into seven thematic areas: organization of care, decision-making and communication, staff support and education, ethics, symptom management, bereavement, and family experience. This study identified critical research areas in PPC, providing a roadmap for future research to enhance support for families and healthcare providers in PPC.

Although palliative care is known to effectively relieve serious health-related suffering (SHS), it is not yet widely available, particularly in Africa. Primary health care has been recognised as an effective means to enhance access to palliative care and achieve universal health coverage. As family physicians play an important role in the delivery of primary health care, this article seeks to illustrate how the family medicine speciality is contributing to efforts to ensure palliative care services are provided throughout the African continent. The World Health Organization recommends three tiers of training for healthcare providers to enhance competencies in palliative care. This training has played out differently in various African countries. This article focuses on the countries represented by the authors, namely South Africa, Ethiopia, Sudan and Ghana. In providing continuous, coordinated, holistic care to patients along the life course, family physicians can anticipate and relieve suffering in a timely manner in ways that no other specialities have been trained to do. We propose that all family physicians' training programmes in Africa prioritise palliative care training along with other leading clinical areas, to ensure that the significant numbers of people dying from SHS receive holistic care and die with dignity.

Although emergency medical service is focused on providing acute prehospital treatment, it is often used by terminally ill patients and their informal caregivers during the last days of patient's life. Little is known about why they decide to use the emergency medical services. The aim was to explore informal caregivers' motivation and decision-making process for calling emergency medical services for their terminally ill loved ones. This study used a qualitative design. Data were collected by semi-structured interviews with 31 relatives of 30 patients who used the emergency medical services. Data were analyzed with NVivo software by utilizing principles of thematic analysis. Through the analysis, four distinct themes emerged: (1) limited availability of support from health care services; (2) insufficient planning of care; (3) decline in the health of the patient and (4) being lost and desperate. For informal caregivers, emergency medical services represented an important source of support while caring for their terminally ill loved ones due to the limited availability of other sources of help, including a lack of specialist palliative care providers. Additionally, informal caregivers had limited knowledge of the dying process and used emergency medical services for professional advice.

Abstract Background: Existing clinical ethics support (CES) instruments are considered useful. However, users report obstacles in using them in daily practice. Including end users and other stakeholders in developing CES instruments might help to overcome these limitations. This study describes the development process of a new ethics support instrument called CURA, a low-threshold four-step instrument focused on nurses and nurse assistants working in palliative care. Method: We used a participatory development design. We worked together with stakeholders in a Community of Practice throughout the study. Potential end users (nurses and nurse assistants in palliative care) used CURA in several pilots and provided us with feedback which we used to improve CURA. Results: We distinguished three phases in the development process. Phase one, Identifying Needs, focused on identifying stakeholder and end user needs and preferences, learning from existing CES instruments, their development and evaluation, and identify gaps. Phase two, Development, focused on designing, developing, refining and tailoring the intervention on the basis of iterative co-creation. Phase three, Dissemination, focused on implementation and dissemination. The intervention, CURA, is a four-step low-threshold intervention that fosters ethical reflection.Conclusions: Participatory development is a valuable approach for developing clinical ethics support instruments. Collaborating with end users and other stakeholders in our development study has helped to meet the needs and preferences of end users, to come up with strategies to refine the instrument in order to enhance its feasibility, and to overcome reported limitations of existing clinical ethics interventions.

Abstract Background: We investigated the need for additional professional support and influencing factors in patients (pts) at initiation and in the course of in- and outpatient specialist palliative care (I-SPC/O-SPC). Methods: Pts entering an urban SPC network consecutively completed questionnaires on psychosocial/spiritual problems and support needs within 72 hours (T0) and within the first 6 weeks (T1) of SPC. Hierarchical linear regression analysis investigated the impact of sociodemographic / clinical variables, psychological / physical burden, social support, and SPC setting on support need. Results: 425 pts (70 years, 48% female, 91% cancer, 67% O-SPC) answered T0, and 167 T1. At T0, main problems were related to transportation, usual activities, and dependency (83-89%). At T1, most prevalent problems were again related to transportation, usual activities, and additionally light housework (82-86%). At T0, support need was highest for transportation, light housework, and usual activities (35-41%). Cross-sectional comparisons of SPC settings revealed higher problem scores in O-SPC at T0 (p=.039), but not at T1. Support need was higher in O-SPC at T0 (p<.001), but lower at T1 (p=.039). Longitudinal analyses showed a decrease of support need scores over time, independent from the SPC setting. At T0, higher distress (p=.047), anxiety/depression (p<.001), physical burden (p<.001) and I-SPC (p<.001), were associated with higher support need scores (at T1 only higher distress; p=.037).Conclusion: Need for additional professional psychosocial/spiritual support was identified in up to 40% of pts with higher need at the beginning of OSPC than of ISPC. During SPC, this need decreased in both settings, but got lower in OSPC than in ISPC over time. Psychosocial/spiritual support need was associated with not only with psychological, but also physical burden.

A couple presents to maternal fetal medicine clinic 3 days after a routine prenatal ultrasound at 19 weeks revealed a brain malformation consistent with severe holoprosencephaly in an otherwise normal appearing fetus. Clinicians share with the parents that many families decide to terminate their pregnancy in this situation on the basis of the likelihood that their child will have lifelong severe neurologic impairment (SNI) and require frequent hospital and medicalized home care. Without much further discussion, the couple immediately responds that they will continue their pregnancy. They express hope that their infant's health will be better than doctors anticipate.Presenting at term in labor with brain abnormalities confirmed on ultrasound, the obstetric clinicians ask the parents about their goals of care. The couple again shares that they remain hopeful and that they would like every intervention done to help their child survive. The infant emerges lethargic and without respiratory effort requiring intubation in the delivery room and admission to the NICU. At the time of birth, the parents share that they are feeling a mix of surprise, anger, joy, and sadness. Over the subsequent months, the infant continues to show signs of SNI, grows well after a gastrostomy tube is placed, and remains intubated for intermittent apnea and airway obstruction. After discussions with the neonatology and surgery teams, the parents agree to a tracheostomy in hopes that this will enable them to eventually reach their goal of bringing their infant home.This case is rife with the types of decisions parents and clinicians face in the care of infants and children with congenital and anatomic brain abnormalities resulting in SNI.1,2 These decisions can be challenging. They are high stakes, have no single correct choice, and are dependent on parent values and preferences.2 Parents and clinicians may experience heightened stress and strong emotions in these difficult situations, making disagreements likely.3,4 Despite this, clinicians must work with families to select the best course of action for their particular child among several preference-sensitive options.2A complicated and often underappreciated aspect of the process of aligning parental values and preferences with treatment options is the use of cognitive shortcuts. Cognitive shortcuts are the automatic thought patterns that people use to make decision-making more efficient.5 They are frequently used in response to stress and complex time-limited decision-making.5 At times, the use of cognitive shortcuts can be beneficial and even necessary. In other situations, however, cognitive shortcuts can be misapplied and result in biased decision-making.Biased decision-making through the misapplication of cognitive shortcuts has particular relevance in decision-making for children with SNI because uncertainty, strong emotions, value judgements, and preference-sensitive options are the norm.6 Parents of children with SNI who misapply a cognitive shortcut may choose a course of action in the moment without fully considering why they prefer that option and how it aligns with their values. Similarly, clinicians who misapply cognitive shortcuts may recommend a specific treatment option without deeply considering and understanding the parents' values and preferences.In the case presented, for instance, the couple may be employing the representativeness cognitive shortcut to estimate the likelihood of their child's prognosis. This may ultimately lead to a biased estimation, optimism bias, in which the parents underestimate the probability of a bad outcome. Similarly, clinicians may recommend comfort care in these situations because of their tendency to underestimate a family's resilience to adapt to an unanticipated outcome or overestimate the impact of a negative outcome (ie, impact bias). As another example, parents may choose more action-oriented interventions, such as proceeding with resuscitation, as opposed to less action-oriented options, such as comfort care for their child, resulting in commission bias (Table 1). We think greater recognition of the cognitive shortcuts used by both parents and clinicians can help signal the opportunity to provide better support by (1) slowing down the decision-making process to ensure adequate elicitation of parental values and time for emotional processing, and (2) perspective taking.When medical decision-making for children with SNI is time-sensitive, it may increase the likelihood that cognitive shortcuts are not only used during the decision-making process but, also, misapplied.7 To the extent possible, slowing down the decision-making process may therefore have many potential benefits. Slowing down may allow parents time to further consider medical information and how it relates to their values, allowing them to be more deliberative in their decision-making. These deliberations may yield deeper insight into what different decisions mean for their child and family. This does not necessarily mean that parents will make different decisions but, rather, that there will be space to explore options more fully. Similarly, slowing down may allow more time for clinicians to elicit family values and explore how they may impact medical recommendations. Although uncertainty and preferences will remain, slowing down may provide an opportunity for parents and clinicians to further evaluate different treatment options together.Time may also give space for parents and clinicians to process their emotions.7 Clinicians can acknowledge emotions by empathizing and aligning with parents. In the case presented, a clinician might say, "I am sorry to share this hard news. I can't imagine how you both might be feeling." By slowing down, clinicians can also reflect on their own emotions and how they may result in the use of cognitive shortcuts that may, ultimately, be influencing their medical recommendations. The act of slowing down may enable the emotional processing necessary to understand how cognitive shortcuts are impacting decision-making, particularly when emotions result in biased decisions that do not reflect values.Through an appreciation of cognitive shortcuts and how their misapplication can result in bias, clinicians may also be better able to understand parent perspectives during the decision-making process. Recognition of cognitive shortcuts may indicate the need for engaged curiosity, a key component of empathy toward the experiences and perspectives of other people.8 This curiosity can be facilitated by questions like "what worries you most right now?" and "what are you most hoping for?": answers to which may generate a better understanding of parental decisions, even when those decisions differ from clinician recommendations.It is important to consider the use of cognitive shortcuts and the biases that can result with their use by parents and clinicians in decision-making for infants and children. Recognizing their use can improve decision-making in stressful, emotionally charged, preference-sensitive situations. We have highlighted how cognitive shortcuts and biases can manifest in the context of an infant with SNI. In clinical practice, clinicians should recognize the use of cognitive shortcuts not only by parents but, also, in their own deliberations. This requires an open attitude, sense of self-awareness, and humility toward the values and preferences of others. In these instances, clinicians can slow down the decision-making process to elicit values and preferences and support the emotional processing that enables perspective taking. This can be accomplished by presenting future decisions well in advance with families, sharing information in a separate conversation then when decisions need to be made, and listening with curiosity to emotions and values. By examining the use of cognitive shortcuts and bias, we may be able to diminish stress during decision-making and provide the empathetic support essential to the care of children, their parents, and their clinicians.

ObjectivesDespite a number of studies on effectiveness of palliative care, there is a lack of complex updated review of the impact of in-hospital palliative care consult service. The objective is to update information on the impact of palliative care consult service in inpatient hospital setting.MethodsThis study was a systematic literature review, following the standard protocols (Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Joanna Briggs Institute tools) to ensure the transparent and robust review procedure. The effect of palliative care consult service was classified as being associated with improvement, no difference, deterioration or mixed results in specific outcomes. PubMed, Scopus, Academic Search Ultimate and SocINDEX were systematically searched up to February 2020. Studies were included if they focused on the impact of palliative care consult service caring for adult palliative care patients and their families in inpatient hospital setting.ResultsAfter removing duplicates, 959 citations were screened of which 49 full-text articles were retained. A total of 28 different outcome variables were extracted. 18 of them showed positive effects within patient, family, staff and healthcare system domains. No difference was observed in patient survival and depression. Inconclusive results represented patient social support and staff satisfaction with care.ConclusionsPalliative care consult service has a number of positive effects for patients, families, staff and healthcare system. More research is needed on factors such as patient spiritual well-being, social support, performance, family understanding of patient diagnosis or staff stress.