Barriers for Adult Patients to Access Palliative Care in Hospitals: A Mixed Methods Systematic Review.

BACKGROUND: Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with palliative care needs. AIM: To review the current evidence on barriers that impair, delay, or prohibit access to palliative care for adult hospital inpatients. DESIGN: A mixed methods systematic review was conducted using an integrated convergent approach and thematic synthesis (PROSPERO ID: CRD42021279477). DATA SOURCES: The Cochrane Library, MEDLINE, CINAHL, and PsycINFO were searched from 10/2003 to 12/2020. Studies with evidence of barriers for inpatients to access existing palliative care services were eligible and reviewed. RESULTS: After an initial screening of 3,359 records and 555 full-texts, 79 studies were included. Thematic synthesis yielded 149 access-related phenomena in 6 main categories: 1) Sociodemographic characteristics, 2) Health-related characteristics, 3) Individual beliefs and attitudes, 4) Interindividual cooperation and support, 5) Availability and allocation of resources, and 6) Emotional and prognostic challenges. While evidence was inconclusive for most socio-demographic factors, the following barriers emerged: having a noncancer condition or a low symptom burden, the focus on cure in hospitals, nonacceptance of terminal prognosis, negative perceptions of palliative care, misleading communication and conflicting care preferences, lack of resources, poor coordination, insufficient expertise, and clinicians' emotional discomfort and difficult prognostication. CONCLUSION: Hospital inpatients face multiple barriers to accessing palliative care. Strategies to address these barriers need to take into account their multidimensionality and long-standing persistence.

A qualitative exploration of cultural safety in nursing from the perspectives of Advanced Practice Nurses: meaning, barriers, and prospects.

BACKGROUND: Cultural safety requires healthcare professionals and organisations to improve healthcare, facilitate patient access to healthcare, and achieve equity within the workforce. METHODS: This ethnomethodological study, which consisted of two phases, explored the concept of cultural safety from the perspective of Advanced Practice Nurses. Semi-structured interviews and the nominal group technique were used to prioritise challenges related to cultural safety, identify barriers to clinical practise and assess educational needs. The data collected was subjected to thematic analysis. RESULTS: Nurses working in Austria, Germany and Switzerland were recruited (N = 29). Accordingly, the phenomenon of cultural safety in health care is not generally known and there is little prior knowledge about it. The most frequently discussed themes were communication difficulties, lack of knowledge, the treatment of people with insufficient language skills and expectations of treatment goals and outcomes, which can lead to conflicts and accusations of unequal treatment due to diverse cultural backgrounds. CONCLUSION: Diverse cultures are encountered in German-speaking healthcare settings. Cultural safety is also about healthcare staff, as nurses with different socialisations encounter prejudice, discrimination and racism. Although the issue of power was not discussed, academic nurses were willing to make an effort to change. Only a minority were aware that lasting change requires challenging one's own cultural structures and adapted behaviours, rather than pushing for the mere acquisition of cultural competence. Organisations were encouraged to introduce self-reflection sessions and provide better access to translation services to improve equity and support nurses.

One-week multidisciplinary post-graduate palliative care training: an outcome-based program evaluation.

BACKGROUND: A multi-professional, post-graduate, one-week palliative care training program was piloted in November 2019 at the University of Ivano-Frankivsk, Ukraine. A formal evaluation of this program was performed. METHODS: This is a comparative, retrospective outcome-based evaluation of an educational intervention. Participants completed evaluation forms at the end of the course (post-intervention = T1), covering demographics, comparative retrospective self-assessment (40 items, 6-point Likert scale), organizational aspects, and general feedback (free text). At T1, the responses represent actual self-assessment, pre-interventional (T0) scores were generated by retrospective self-assessment. The Retrospective Performance Gain (RPG) was calculated on group level for the comparative self-assessment, demographic and organizational variables were analyzed by descriptive statistics, and free text answers were processed by qualitative methodology (content analysis). RESULTS: Fifty-three of 56 attendants from all professions relevant to palliative care completed the evaluation forms (response 94,6%), with mean age 39y (22-64) and mean working experience 13,6y (1-44). Overall ratings of the program were very positive. Comparative retrospective self-assessment demonstrated a marked RPG from T0 to T1 on all items. Free text comments emphasized the need for regular nation-wide educational programs and for further education in bereavement care; inter-professional practice; communication; palliative care philosophy; professional self-care; specific nursing skills; dementia care; and advocacy, while the general contribution of the program to palliative care development in Ukraine was acknowledged. CONCLUSIONS: Systematic evaluation of a post-graduate international training program in palliative care may provide a mutual learning experience and map country-specific barriers and facilitators that have to be addressed when setting up palliative care services.

Development of a German version of the Carer Support Needs Assessment Tool (CSNAT): The process of translation and cultural adaptation.

OBJECTIVE: The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity. METHOD: A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis. RESULTS: The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called "KOMMA" was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers' needs at the cost of the patients. SIGNIFICANCE OF RESULTS: A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.

"If I had stayed back home, I would not be alive any more " - Exploring end-of-life preferences in patients with migration background.

BACKGROUND: In patients with life-limiting conditions and a history of migration, a higher risk of not dying at home and limited access to palliative care services has been reported. AIM: To explore the views and end-of-life preferences of patients with a migration history in Germany and to identify migration specific themes. DESIGN: Two-armed study using Kaufmann's 'understanding interview' ('focused interview') method and grounded theory approach. Thematic content analysis was applied using MaxQDA 12 software. SETTING/PARTICIPANTS: Migrant and non-migrant adult patients with far advanced, life-limiting disease receiving palliative care in different specialist level settings (specialist home palliative care, palliative care inpatient unit, inpatient hospice). RESULTS: The 37 interviewees (19 native Germans and 18 patients from Europe and the U.S., Israel, Turkey, and Indonesia) expressed eleven themes covering health care- and patient-related issues, of which four emerged to be specific for migrants: worse survival in home country; the perception of an altered identity and 'not belonging'; language skills as prerequisite to survive; and longing for 'home' while being attached to Germany. From these categories, three overarching themes were derived: (1) a limited understanding of the concept of 'palliative care'; (2) the suppression of end of life discussions for its association with suffering and loss of autonomy; and (3) the significance of complex individual migration histories. CONCLUSIONS: Based on these findings, the concept of a 'double home' experience is proposed. Barriers to access to palliative care should be minimized for all patients while cultural stereotyping has to be avoided.

End of life care in nursing homes: Translating focus group findings into action.

Therapeutic options for nursing home residents focus on functional improvement, while inadequate hospital admissions in the dying phase are frequent. The aim of this study was to explore views, attitudes, and concerns among staff and to embark on a process that facilitates end-of-life care on an institutional level. Three focus group interviews were conducted with nursing home staff (nurses, care managers, physicians). The discussants (22) expressed the following issues: workload; ethical conflicts; additional resources; "living palliative care"; deleterious effect of restorative aims; lack of training; fear; knowledge and skills; rituals; lack of attachment, frustration, and abuse; team; discouragement; resilience enhanced by good care; style of communication; avoidance; the "palliative status"; legal concerns and hospital admissions. Nursing home staff expressed willingness to care for the dying. Providing good end of life care may promote professional resilience and personal integrity. Therefore, team issues, fears, and avoidance should be addressed.

Managing Advanced Progressive Supranuclear Palsy and Corticobasal Degeneration in a Palliative Care Unit: Admission Triggers and Outcomes.

BACKGROUND: Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are characterized by rapid deterioration and a fatal outcome. OBJECTIVES: Admission triggers, treatment efficacy, and care patterns. METHODS: Retrospective analysis of patients with PSP/CBD admitted to an inpatient specialized palliative care service. RESULTS: In 38 patients, there were 63 admissions for swallowing difficulties, falls, pain, impaired communication, cognitive/mood disturbances, respiratory symptoms, and infection. Mean length of stay was 11.6 days. Treatment response was variable. In 68%, of admission episodes there was stabilization or improvement, 75% were discharged home. In case of readmission, the mean interval has been 9.7 months. Time since diagnosis and admission triggers were not associated with outcome or death. CONCLUSION: Patients showed high symptom load contrasting with discharge rates and subsequent health care utilization. Brief multidisciplinary interventions might be helpful to preserve autonomy.

Omega-3 poly-unsaturated fatty acids for the prevention of severe neutropenic enterocolitis in patients with acute myeloid leukemia.

Neutropenic enterocolitis is a potentially fatal complication of myeloablative chemotherapy in patients with acute myeloid leukemia. Omega-3 polyunsaturated fatty acids (PUFA) are precursors of potent anti-inflammatory prostaglandins. Our aim was to explore the safety and effectiveness of omega-3 PUFA added to parenteral nutrition in protecting leukemia patients from severe enterocolitis. Fourteen patients with acute myeloid leukemia who received omega-3 PUFA in a Phase II trial were compared with 66 consecutive control patients not getting this intervention. We performed crude and adjusted comparisons, using inverse probability of treatment weighting for adjusted analysis, and blind outcome assessment to minimize assessor bias. Primary outcome was severe enterocolitis (≥Grade 3). The crude odds ratio of Grade 3 colitis or higher was 1.36 (95% CI 0.37 to 4.96, P = 0.64), and the adjusted odds ratio was 0.79 (95% CI 0.35 to 1.78, P = 0.57). There was little evidence to suggest differences between groups in serious adverse events and overall mortality. Our results provide little evidence that addition of omega-3 PUFA is beneficial in this condition. Routine treatment with omega-3 PUFA is currently not warranted.

Palliative care needs, symptoms, and treatment intensity along the disease trajectory in medical oncology outpatients: a retrospective chart review.

BACKGROUND: Early integration of palliative care into cancer disease management is beneficial for patients with advanced tumors. However, little is known about the association of palliative care interventions with symptom burden and treatment aggressiveness at the end of life (EoL). METHODS: To assess determinants of symptom burden and treatment intensity at the EoL, a retrospective chart review was conducted in university cancer clinic outpatients who died between July 2009 and June 2011. The objective was the correlation of place of death, palliative care utilization, prior EoL discussion, and social background (determinant variables) with symptom burden and treatment intensity (outcome variables). RESULTS: Ninety-six patients (61 men and 35 women) died; the mean age at death was 62.4 years (range 24-83). Mean duration of treatment was 17.9 months (range 1-129). Data on the last 14 days (3) of life were available for 62 (44) patients. Forty-seven patients received aggressive EoL care which was strongly associated with hospital death (p = 0.000, χ2 test). The 15 patients having used palliative care services or dying in a palliative care unit (PCU) had fewer symptoms (p = 0.006, t test) and interventions (p = 0.000, t test) at the EoL. Having addressed EoL issues was correlated with fewer procedures during the last 3 days (p = 0.035, t test). CONCLUSIONS: Most cancer patients receive aggressive EoL care interfering with quality of life. Despite limitations by small sample size and missing data, the results suggest that palliative care utilization is associated with reduced symptom burden and intensity of treatment at the EoL. Timely discussion of EoL issues may reduce the number of unnecessary interventions and facilitate referral to the PCU.

Methicillin-resistant Staphylococcus aureus (MRSA) management in palliative care units and hospices in Germany: a nationwide survey on patient isolation policies and quality of life.

BACKGROUND: For palliative care settings, little is known about the benefits of specific methicillin-resistant Staphylococcus aureus containment regimens and the burdens patient isolation imposes on affected patients, their families, and professional caregivers. AIM: To explore the current practice of MRSA management and its impact on inpatients' quality of life as perceived by professional caregivers. DESIGN: Survey of inpatient palliative care institutions using 23-item questionnaires (infrastructural data: six items, management process: 14, clinical significance: three). SETTING/PARTICIPANTS: All palliative care units (179) and hospices (181) listed in Germany's directory of palliative care services. The χ(2) test was used to test for differences; significance level: p ≤ 0.05. RESULTS: 229 of 360 questionnaires were returned. More than 90% of the responding institutions employed specific MRSA protocols. Lack of resources was a more important issue for palliative care units than for hospices regarding availability of single rooms (p = 0.002) and staffing (p = 0.004). Compared to hospices, palliative care units more frequently isolated MRSA patients (p = 0.000), actively treated colonization (p = 0.026), assessed the efficacy of eradication (p = 0.000), provided information on MRSA management to patients (p = 0.014) and relatives (p = 0.001), more often restricted patients' activities (p = 0.000), and reported a negative impact on quality of life (p = 0.000). CONCLUSIONS: Rigorously applied MRSA protocols impose significant burdens at the end of life. Research on clinical outcomes including quality of life may identify interventions of questionable benefit. The issue of handling MRSA should be studied as a model for the management of other highly complex conditions and special needs such as patient isolation.

Four essential drugs needed for quality care of the dying: a Delphi-study based international expert consensus opinion.

PURPOSE: The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care. MATERIAL AND METHODS: Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness. RESULTS: Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs. CONCLUSION: Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.

Fungating Wounds - Multidimensional Challenge in Palliative Care.

SUMMARY: The management of fungating, malignant wounds is a challenge for the palliative care team. Open, malodorous, poorly healing lesions are obvious signs of underlying disease. In addition, pain and functional impairment remind the patients of their incurable illness. A multidimensional approach is necessary to meet the needs of these patients and to improve quality of life. Although achieving wound closure is rarely a realistic goal, modern techniques of wound management can help to minimize odours and exudates. Specialist knowledge in palliative care is needed to provide adequate pain control. Psychosocial support may help patients to cope with the situation and their limited abilities.

Pain Management and Symptom-Oriented Drug Therapy in Palliative Care.

SUMMARY: Patients with advanced life-limiting disease often suffer from symptoms that considerably impair their quality of life and that of their families. Palliative care aims to alleviate these symptoms by a multidimensional approach. Pharmacotherapy is an essential component. The objective of this review is to give an overview of symptom-oriented drug therapy for the most important symptoms in palliative care. Leading symptoms that affect quality of life include pain, dyspnea, nausea and emesis, weakness and disorientation. Careful examination and history taking help to understand the individual mechanisms underlying these symptoms. Specific pharmacotherapy provides an efficient way to achieve symptom control in the context of palliative care.