Background: oral health problems among people receiving palliative care are common and can significantly affect quality of life. Nurses are at the frontline of palliative care in Australia. However, how optimal oral health care is addressed in clinical practice by palliative nurses is not known.
Aim: To explore the perceptions of nurses working in Australian palliative care settings to determine the acceptability, challenges and recommendations that need to be considered to develop and implement an oral health care model in palliative care settings.
Methods: Two focus groups were conducted with community (n = 8) and inpatient nurses (n = 10) working in urban palliative care settings.
Findings: Four main themes were developed through consensus: 1) Oral health is important in the palliative care setting; 2) Additional training could enhance what nurses already do; 3) Barriers to receiving oral care: a structural issue; 4) Exploring alternative pathways to dental services.
Discussion: Nurses recognised the importance of oral health in palliative care; however, the paucity of set protocols based on existing guidelines meant that oral care was often unstructured. Systemic factors reduced the number of available options for people receiving palliative care to access professional dental treatment. Although alternative solutions, including teledentistry services, were explored, there were some constraints.
Conclusion: A palliative care oral health model of care would need to integrate existing formal guidelines into a comprehensive framework specific for palliative care nurses and develop palliative care oral health training for them taking into consideration existing barriers for people to receive professional dental treatment.
Objective: Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population.
Methods: The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients’ needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted.
Results: Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction).
Discussion: The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.
Objective: To test the effectiveness of theoretically driven role model video stories in improving knowledge of palliative care among a diverse sample of older adults.
Method: We developed three 3–4 min long theoretically driven role model video stories. We then recruited cognitively intact, English-speaking adults aged 50 and older from senior centers, assisted living, and other community-based sites in the greater Los Angeles area. Using a pretest–posttest study design, we surveyed participants using the 13-item Palliative Care Knowledge Scale (PaCKS) and also asked participants about their intentions to enroll in palliative care should the need arise. Participants first completed the pretest, viewed the three videos, then completed the posttest comprised of the same set of questions.
Results: PaCKS score improved from an average of 4.5 at baseline to 10.0 following video screening (t(126) = 12.0, p < 0.001). Intentions to enroll oneself or a family member in palliative care rose by 103% ( 2 = 7.8, p < 0.01) and 110% ( 2 = 7.5, p < 0.01), respectively. Regression analysis revealed that participants who believed the role models are real people (ß = 2.6, SE = 1.2, p < 0.05) significantly predicted higher change in PaCKS score. Conversely, participants with prior knowledge of, or experience with, palliative care (ß = -5.9, SE = 0.8, p < 0.001), non-whites (ß = -3.6, SE = 0.9, p < 0.001), and widows (ß = -2.9, SE = 1.1, p < 0.01) significantly predicted lower changes in PaCKS score.
Significance of results: This study suggests that theoretically driven role model video stories may be an effective strategy to improve palliative care knowledge. Role model video stories of diverse palliative care patients provide one way to mitigate health literacy barriers to palliative care knowledge.
Context: During the course of March and April 2020, New York City experienced a surge of a 170,000 coronavirus disease 2019 (COVID-19) cases, overwhelming hospital systems and leading to an unprecedented need for palliative care services.
Objectives: to present a model for rapid palliative care workforce expansion under crisis conditions, using supervised advanced psychiatry trainees to provide primary palliative services in the acute care and emergency setting.
Methods: In response to the New York City COVID-19 surge, advanced psychiatry trainees at New York-Presbyterian Columbia University Irving Medical Center were rapidly trained and redeployed to a newly formed psychiatry-palliative care liaison team. Under the supervision of consultation-liaison psychiatrists (who also served as team coordinators), these trainees provided circumscribed palliative care services to patients and/or their families, including goals-of-care discussions and psychosocial support. Palliative care attendings remained available to all team members for more advanced and specialized supervision.
Results: The psychiatry-palliative care liaison team effectively provided palliative care services during the early phase and peak of New York City's COVID-19 crisis, managing up to 16 new cases per day and provided longitudinal follow-up, thereby enabling palliative care specialists to focus on providing services requiring specialist-level palliative care expertise.
Conclusion: by training and supervising psychiatrists and advanced psychiatry trainees in specific palliative care roles, palliative care teams could more effectively meet markedly increased service needs of varying complexity during the COVID-19 crisis. As new geographic regions experience possible COVID-19 surges in the coming months, this may serve as a model for rapidly increasing palliative care workforce.
Background: Controlled donation after circulatory death (cDCD) is a major source of organs for transplantation. A potential cDCD donor poses considerable challenges in terms of identification of those dying within the predefined time frame of warm ischemia after withdrawal of life-sustaining treatment (WLST) to circulatory arrest. Several attempts have been made to develop models predicting the time between treatment withdrawal and circulatory arrest. This time window determines whether organ donation can occur and influences the quality of the donated organs. However, the selected patients used for these models were not always restricted to potential cDCD donors (eg, patients with cancer or severe infections were also included). This severely limits the generalizability of those data.
Objective: The objectives of this study are the following: (1) to develop a model predicting time to death within 60 minutes in potential cDCD patients; (2) to validate and update previous prediction models on time to death after WLST; (3) to determine timing and patient characteristics that are associated with prognostication and the decision-making process that leads to initiating end-of-life care; (4) to evaluate the impact of timing of family approach on organ donation approval; and (5) to assess the influence of variation in WLST processes on postmortem organ donor potential and actual postmortem organ donors.
Methods: In this multicenter observational prospective cohort study, all patients admitted to the intensive care unit of 3 university hospitals and 3 teaching hospitals who met the criteria of the cDCD protocol as defined by the Dutch Transplant Foundation were included. The target of enrolment was set to 400 patients. Previously developed models will be refitted in our data set. To further update previous prediction models, we will apply least absolute shrinkage and selection operator (LASSO) as a tool for efficient variable selection to develop the multivariable logistic regression model.
Results: This protocol was funded in August 2014 by the Dutch Transplant Foundation. We expect to have the results of this study in July 2020. Patient enrolment was completed in July 2018 and data collection was completed in April 2020.
Conclusions: This study will provide a robust multimodal prediction model, based on clinical and physiological parameters, that can predict time to circulatory arrest in cDCD donors. In addition, it will add valuable insight in the process of WLST in cDCD donors and will fill an important knowledge gap in this essential field of health care.
ntroduction: Patients dying a short time after receiving palliative radiation are unlikely to have received benefit and may experience harm. To monitor the potential for avoidable harm, 30-day mortality following palliative radiation has been recommended for use as a quality indicator and the Royal College of Radiologist have recommended a rate of lower than 20%. At the Canterbury Regional Cancer and Haematology Service in Christchurch, New Zealand (CRCHS), we investigated 30-day mortality and evaluated the prognostic value of the TEACHH model in our population.
Methods: Palliative treatments from two, two-year periods (2012/2013 and 2016/2017) were retrospectively reviewed. We analysed 30-day mortality and several influencing variables. Patients were divided into three groups using the TEACHH model (type of cancer, performance status, age, prior palliative chemotherapy, prior hospitalizations and hepatic metastases).
Results: There were 1744 patients; 30-day mortality was 10% and was higher in patients with lung cancer (17% vs. 8% in non–lung cancer patients, P < 0.0001), patients having less than five fractions (13% vs. 9%, P : 0.0199) and patients in TEACHH group B/C (21% in C, 11% in B and 2% in group A, P < 0.0001). The majority of treatments (84%) used five fractions or less.
Conclusions: The mortality rate is within the suggested quality indicator, and the decreasing mortality with increasing fractionation demonstrates suitable selection of patients for longer treatment regimens. The TEACHH model can be used to increase precision in estimating prognosis, identifying patients who should not receive treatment and conversely identifying those for whom a prolonged fractionation schedule may be appropriate.
Background: the TEACHH and Chow models were developed to predict life expectancy (LE) in patients evaluated for palliative radiotherapy (PRT). We sought to validate the TEACHH and Chow models in patients who died within 90 days of PRT consultation.
Methods: A retrospective review was conducted on patients evaluated for PRT from 2017 to 2019 who died within 90 days of consultation. Data were collected for the TEACHH and Chow models; one point was assigned for each adverse factor. TEACHH model included: primary site of disease, ECOG performance status, age, prior palliative chemotherapy courses, hospitalization within the last 3 months, and presence of hepatic metastases; patients with 0-1, 2-4, and 5-6 adverse factors were categorized into groups (A, B, and C). The Chow model included non-breast primary, site of metastases other than bone only, and KPS; patients with 0-1, 2, or 3 adverse factors were categorized into groups (I, II, and III).
Results: A total of 505 patients with a median overall survival of 2.1 months (IQR: 0.7-2.6) were identified. Based on the TEACHH model, 10 (2.0%), 387 (76.6%), and 108 (21.4%) patients were predicted to live >1 year, >3 months to =1 year, and =3 months, respectively. Utilizing the Chow model, 108 (21.4%), 250 (49.5%), and 147 (29.1%) patients were expected to live 15.0, 6.5, and 2.3 months, respectively.
Conclusion: Neither the TEACHH nor Chow model correctly predict prognosis in a patient population with a survival <3 months. A better predictive tool is required to identify patients with short LE.
Objectives: To develop a mortality-predictive model for correct identification of patients with non-cancer multiple chronic conditions who would benefit from palliative care, recognise predictive indicators of death and provide with tools for individual risk score calculation.
Design: Retrospective observational study with multivariate logistic regression models.
Participants: All patients with high-risk multiple chronic conditions incorporated into an integrated care strategy that fulfil two conditions: (1) they belong to the top 5% of the programme’s risk pyramid according to the adjusted morbidity groups stratification tool and (2) they suffer simultaneously at least three selected chronic non-cancer pathologies (n=591).
Main outcome measure: 1 year mortality since patient inclusion in the programme.
Results: Among study participants, 201 (34%) died within the 1 year follow-up. Variables found to be independently associated to 1 year mortality were the Barthel Scale (p<0.001), creatinine value (p=0.032), existence of pressure ulcers (p=0.029) and patient global status (p<0.001). The area under the curve (AUC) for our model was 0.751, which was validated using bootstrapping (AUC=0.751) and k-fold cross-validation (10 folds; AUC=0.744). The Hosmer-Lemeshow test (p=0.761) showed good calibration.
Conclusions This study develops and validates a mortality prediction model that will guide transitions of care to non-cancer palliative care services. The model determines prognostic indicators of death and provides tools for the estimation of individual death risk scores for each patient. We present a nomogram, a graphical risk calculation instrument, that favours a practical and easy use of the model within clinical practices.
Oyster Care is the result of the search by caregivers in Flanders, Belgium, to develop quality care for patients with a Severe and Persistent Mental Illness (SPMI). This article offers a conceptual analysis of the Oyster Care model, based on experiences, analysis, and reflection of the authors, and on several examples. The starting point of the development of this new care model is the complex and difficult context of the care for SPMI patients. Their needs and suffering are very challenging on account of a wide variety of causes. At the same time they are in danger of being neglected by the care system. Paradoxically, the development and implementation of psychosocial rehabilitation in Belgian mental health care puts the care for these patients under pressure. In practice, they are often exposed to over- or under-treatment. Another aspect that has influenced the search for more qualitative care in cases of severe psychological suffering in general and palliative approaches in particular is the background of the legal regulation of euthanasia in Belgium. Oyster Care is an innovative form of the palliative approach and philosophy, tailored to the specific target group of SPMI patients. The caregivers create an “exoskeleton” or “shell” in which SPMI patients can “come to life”: they are mainly dependent on the “external structure” they receive in order to function, rather than on the “internal structure” of their abilities. It is a dynamic approach that responds to the needs, possibilities and pace of each patient: within this safety, people can fold back or take new steps. Oyster Care is also a holistic care approach, based on four pillars: physical care adequately responding to the somatic impairments of these patients; psychological care changing the scope of therapy by focusing on mental comfort and wellbeing; social care providing a structure of daily activities and contacts; existential care enhancing the experience of life as valuable and meaningful. The wellbeing of patients is paramount and requires a range of interventions, such as a highly personal approach, a flexible dealing with rules, a great dose of creativity in everyday life, extensive expertise in somatic care, and specific attention to existential needs and the search for meaning. The development of this care model in a number of care units in Flanders increases the wellbeing of the patients and creates a significant positive dynamic among caregivers. However, more research and resources are needed to further develop and integrate this model.
The COMFORT Model has recently been revised based on feedback from bedside nurses working in palliative care and oncology and includes the following components: Connect, Options, Making Meaning, Family Caregiver, Openings, Relating, and Team. Based on clinical and nonclinical research in hospital, hospice, palliative care, and interdisciplinary education settings, the authors present the updated COMFORT Model. Originally introduced in 2012 to support the work of the nurse, the model is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by nurses, but rather a set of communication principles that are practiced concurrently and reflectively during patient/family care. In its restructuring, we focus on the role of health literacy throughout the COMFORT components in relationship to the health literacy attributes of a health care organization. A brief summary of COMFORT components is provided and includes strategies and competencies contributing to a health-literate care organization. Both health literacy and COMFORT are explored using specific communication challenges that underscore the role of the nurse in accomplishing person-centered and culturally responsive care, especially in chronic and terminal illness. The integration of the COMFORT Model into nursing education is proposed.
Heart failure (HF), a clinical syndrome with variable trajectory has become more common. As people with HF experience functional decline during periods of deterioration in their HF status, or with aging, their needs for palliative care increase. This review considers the palliative aspects of evidence-based HF care, which benefit patients while also addressing the underlying etiology of the HF. We also identify symptoms common to patients with HF and management beyond evidence-based HF care. Prognostic models and tools to identify patients appropriately evaluated by HF specialty experts might help clinicians understand the patient's status. Rather than trying to identify a point at which palliative care should be included in care for a patient with HF, we suggest that identifying specific needs of the patient and family is a better way to target palliative care interventions. We review available publications that have explored integration of palliative care into HF care, and propose an outpatient clinic model that assesses needs and symptoms and directs HF specialist or palliative care based on this assessment.
A hallmark of science is the open exchange of knowledge. At this time of crisis, it is more important than ever for scientists around the world to openly share their knowledge, expertise, tools, and technology. Scientific models are critical tools for anticipating, predicting, and responding to complex biological, social, and environmental crises, including pandemics. They are essential for guiding regional and national governments in designing health, social, and economic policies to manage the spread of disease and lessen its impacts. However, presenting modeling results alone is not enough. Scientists must also openly share their model code so that the results can be replicated and evaluated.
Introduction: Early access to cancer palliative care is recommended. Descriptions of structures and processes of outpatient palliative care clinics operated within smaller hospitals are scarce. This paper presents the development and operation of a fully integrated cancer and palliative care outpatient clinic at a local hospital in a rural region of Mid-Norway offering palliative care concurrent with cancer treatment. A standardized care pathway was applied.
Methods: Palliative care is in Norway part of the public healthcare system. Official recommendations recent years point out action points to improve delivery of palliative care. An integrated cancer and palliative care outpatient clinic at a local hospital and an innovative care delivery model was developed and operated in this setting. Patients were recruited for a descriptive study of the patient population. Clinical data were collected by clinical staff and 13 symptom intensities were reported by the patients.
Results: Cancer and palliative care were provided by one team of healthcare professionals trained in both fields. There was a close collaboration with the other departments at the hospital, with its affiliated tertiary hospital, and with community health and care services to provide timely referral, enhanced continuity, and improved coordination of care. Eighty-eight patients were included. Mean age was 65.6 years, the most common cancer diagnoses were digestive organs (22.7%), male genital organs (20.5%) or breast (25.0%), 75.0% had metastatic or locally advanced cancer, 59.1% were treated with non-curative intention and 93.1% had Karnofsky Performance Status = 80%. Median scores of individual symptoms ranged from 0 to 3 (numerical rating scale, 0–10) and 61.0% reported at least one clinically significant symptom rating (= 4).
Conclusion: This delivery model of integrated outpatient cancer and palliative care is particularly relevant in rural regions allowing cancer patients access to palliative care earlier in the disease trajectory and closer to home
Context: Universal screening to identify vulnerable patients who may receive limited benefits from life-sustaining treatments can facilitate palliative care in dialysis populations.
Objectives: We aimed to develop prediction models for 1-year mortality in peritoneal dialysis patients.
Methods: This prospective cohort study included 401 adult Taiwanese prevalent peritoneal dialysis patients (average age 56.2 ± 14 years). In addition to obtaining clinical characteristics and laboratory data, the primary care nurses evaluated the “surprise question” and “palliative care screening tool” for each patient in March 2015. Multivariate logistic regression models were conducted to predict the primary outcome of 1-year all-cause mortality.
Results: There were 34 (8.5%) patients who died during the first year of follow-up. Patients allocated to the “not surprised” group according to the surprise question and those who received a score = 4 on the palliative care screening tool had increased odds of death [odds ratio 24.68 (95% CI 10.66 - 57.13) and 12.18 (95% CI 5.66 - 26.21), respectively]. We also developed a clinical risk model for 1-year mortality that included sex, dialysis vintage, coronary artery disease, malignancy, normalized protein nitrogen appearance, white blood cell count, and serum albumin and sodium levels. Integrating the surprise question, palliative care screening tool, and clinical risk model exhibited good discrimination with an area under the receiver operating characteristic curve of 0.95. Kaplan-Meier analysis showed worse survival in high risk patients predicted by the integrated model (log-rank P<.001).
Conclusion: screening with the use of the integrated measurement can identify high-risk peritoneal dialysis patients. This approach may facilitate palliative care interventions for at-risk the subpopulations.
Prediction of short-term mortality in elderly patients with heart failure (HF) would be useful for clinicians when discussing HF management or palliative care.
A prospective multicenter cohort study was conducted between July 2014 and July 2018. A total of 504 consecutive elderly patients (age = 75 years) with HF (mean age 85 years, 50% women) were enrolled. We used a multiple logistic regression analysis with stepwise variable selection to select predictive variables and to determine weighted point scores. After analysis, the following variables predicted short-term mortality and comprised the risk score: previous HF admission (3 points), New York Heart Association III or IV (2 points), body mass index < 17.7 kg/m2 (4 points), serum albumin < 3.5 g/dL (9 points), and left ventricular ejection fraction < 50% (2 points). The c-statistic was 0.820. We compared mortality in low-risk (0-6 points, n = 188), intermediate-risk (7-13 points, n = 241), and high-risk (14-20 points, n = 75) groups. A total of 43 (8.5%) patients died within 6 months after discharge. Mortality was significantly higher in groups with higher scores (low-risk group, 0.5%; intermediate-risk group, 9.1%; high-risk group, 26.7%; P < 0.001).
We developed a predictive model for 6-month mortality in elderly patients with HF. This risk score could be useful when discussing advanced HF therapies, palliative care, or hospice referral with patients.
OBJECTIVE: Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank.
METHOD: The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively.
RESULTS: There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction.
SIGNIFICANCE OF RESULTS: The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.
BACKGROUND: Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents' ideas about what constitutes a "good death" in a pediatric intensive care unit vary widely.
OBJECTIVE: To synthesize parents' perspectives on end-of-life care in the pediatric intensive care unit in order to define the characteristics of a good death in this setting from the perspectives of parents.
METHODS: A concept analysis was conducted of parents' views of a good death in the pediatric intensive care unit. Empirical studies of parents who had experienced their child's death in the inpatient setting were identified through database searches.
RESULTS: The concept analysis allowed the definition of antecedents, attributes, and consequences of a good death. Empirical referents and exemplar cases of care of a dying child in the pediatric intensive care unit serve to further operationalize the concept.
CONCLUSIONS: Conceptual knowledge of what constitutes a good death from a parent's perspective may allow pediatric nurses to care for dying children in a way that promotes parents' coping with bereavement and continued bonds and memories of the deceased child. The proposed conceptual model synthesizes characteristics of a good death into actionable attributes to guide bedside nursing care of the dying child.
Context: We previously developed the reintegration model to describe the adjustment process for individuals at the end of life. However, caregivers and loved ones also require significant support and must work to reimagine their relationship with one another.
Objectives: We sought to develop a dyadic version of the reintegration model that delineates key parts of the adjustment process that occur between the patient and another significant person rather than as two separate individuals.
Methods: We refined an initial conceptual model of this dyadic process with findings from a narrative literature review on spousal dyadic mutuality. We assessed emergent themes regarding dyadic adjustment from the literature for their fit with our original reintegration model and through consensus discussion, applied the findings to a final proposed conceptual model of dyadic reintegration at the end of life.
Results: Examples of dyadic adjustment in the literature relate to the comprehension, creative adaptation, and reintegration processes described in the original reintegration model. Evidence also supported three substantive additions in the new dyadic model: (1) shared understanding that the harmony of the dyad is interrupted; (2) consideration of the "we" (the dyad) and the "I" (the individual) in mutual reflection to create a shared narrative; and (3) emphasis on relationship as a factor impacting adjustment processes.
Conclusions: Available evidence supports interdependent relationships between members of dyads for the three adaptation processes of comprehension, creative adaptation, and reintegration in the model. This dyadic reintegration model can be useful in clinical practice to support dyads facing life-limiting illness.
BACKGROUND: In Canada, access to palliative care is a growing concern, particularly in rural communities. These communities have constrained health care services and accessing local palliative care can be challenging. The Site Suitability Model (SSM) was developed to identify rural "candidate" communities with need for palliative care services and existing health service capacity that could be enhanced to support a secondary palliative care hub. The purpose of this study was to test the feasibility of implementing the SSM in Ontario by generating a ranked summary of rural "candidate" communities as potential secondary palliative care hubs.
METHODS: Using Census data combined with community-level data, the SSM was applied to assess the suitability of 12 communities as rural secondary palliative care hubs. Scores from 0 to 1 were generated for four equally-weighted components: (1) population as the total population living within a 1-h drive of a candidate community; (2) isolation as travel time from that community to the nearest community with palliative care services; (3) vulnerability as community need based on a palliative care index score; and (4) community readiness as five dimensions of fit between a candidate community and a secondary palliative care hub. Component scores were summed for the SSM score and adjusted to range from 0 to 1.
RESULTS: Population scores for the 12 communities ranged widely (0.19-1.00), as did isolation scores (0.16-0.94). Vulnerability scores ranged more narrowly (0.27-0.35), while community readiness scores ranged from 0.4-1.0. These component scores revealed information about each community's particular strengths and weaknesses. Final SSM scores ranged from a low of 0.33 to a high of 0.76.
CONCLUSIONS: The SSM was readily implemented in Ontario. Final scores generated a ranked list based on the relative suitability of candidate communities to become secondary palliative care hubs. This list provides information for policy makers to make allocation decisions regarding rural palliative services. The calculation of each community's scores also generates information for local policy makers about how best to provide these services within their communities. The multi-factorial structure of the model enables decision makers to adapt the relative weights of its components.
BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear.
OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness.
DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness.
ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences.
FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society.
DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness.
CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.