A systematic review of classifications systems to determine complexity of patient care needs in palliative care

BACKGROUND: Providing the right care for each individual patient is a key element of quality palliative care. Complexity is a relatively new concept, defined as the nature of patients' situations and the extent of resulting needs. Classifying patients according to the complexity of their care needs can guide integration of services, anticipatory discussions, health service planning, resource management and determination of needs for specialist or general palliative care. However, there is no consistent approach to interpreting and classifying complexity of patient needs. AIM: The aim of this article is to identify and describe classification systems for complexity of patient care needs in palliative care. DESIGN: Narrative systematic review (PROSPERO registration number CRD42020182102). DATA SOURCES: MEDLINE, Embase, CINAHL and PsychINFO databases were searched without time limitations. Articles were included that described classification systems for complexity of care requirements in populations with palliative care needs. RESULTS: In total, 4301 records were screened, with nine articles identified reporting the use of patient classification systems in populations with palliative care needs. These articles included the use of six classification systems: HexCom, Perroca Scale, AN-SNAP, Hui Major Criteria, IDC-Pal and PALCOM. These systems were heterogenous in the manner they determined complexity of care needs. The HexCom and IDC-Pal systems contained items that covered all domains of complexity as described by Hodiamont; personal, social support, health care team and environment. CONCLUSION: Although six classification systems have been developed, they access differing aspects of care needs and their application has been limited. The HexCOM and IDC-Pal systems offer the broadest determinations of complexity from an individual perspective. Further research is needed to apply these systems to populations external to those in which they were developed, and to appreciate how they may integrate with, and impact, clinical care

The content validity of the items related to the social and spiritual dimensions of the Utrecht Symptom Diary - 4 Dimensional from a patient's perspective: a qualitative study

Context: In palliative care, caregivers often lack words and competences to discuss patients' needs in social and spiritual dimensions. The Utrecht Symptom Diary-4 Dimensional (USD-4D) is an instrument that can be used to monitor symptoms and needs in the physical, psychological, social, and spiritual dimensions and to optimize communication between patients and caregivers. Objective: To assess the content validity of the USD-4D items related to the social and spiritual dimensions from a patient's perspective, measured in terms of comprehensibility, relevance, and comprehensiveness. Methods: An explorative qualitative study was conducted using in-depth semistructured interviews and thematic analysis. Twelve participants (male N = 7, 53–87 years old) with an estimated life expectancy of less than one year were recruited in two home care services: a general hospital and a hospice. Results: The instructions, items, and response options were comprehensible for almost all participants. The meaning that was provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one's life, and death and afterlife. This corresponds with the intended meaning. The items were relevant at some points in time. Not all participants had needs for personal care during the interviews. Participants found the USD-4D comprehensive, no key concepts related to the social or spiritual dimensions appeared to be missing. Conclusions: The USD-4D constitutes a content valid PROM from the patient's perspective. The items support patients in identifying needs in the social and spiritual dimensions and in the conversation to further explore these needs

‘It is important to feel invited’: what patients require when using the Utrecht Symptom Diary – 4 Dimensional, a qualitative exploration

Background: In palliative care, the Utrecht Symptom Diary – 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients’ autonomy, it is essential to know what patients need to use it. Objective: This study aims to identify what patients need when using the USD-4D in clinical palliative care. Design: A generic qualitative design with primary and secondary analyses of semistructured interviews. Methods: Patients ⩾18 years with a life-limiting illness were purposefully recruited within hospice and home care settings if they were in their last year of life as identified by the surprise question. Patients had to be aware of their life-threatening condition. Patients were selected in two tranches. In the first tranche, patients had to have completed the USD-4D at least once. The second tranche consisted of patients who were not familiar with the USD-4D in clinical practice and were interviewed in a previous study on the content validity of the USD-4D. The interviews were transcribed verbatim and were subjected to thematic analysis. Results: Twenty-five patients were included (14 men, ages 44–87). Patients’ needs when using the USD-4D were summarized in three themes: (1) feeling invited, (2) being aware of the purpose and function of the USD-4D, and (3) experiencing a personal and nonjudgmental approach. Conclusion: For patients to optimally benefit from the USD-4D as a supportive measure of their autonomy in clinical palliative care, it is essential that they feel invited to use it. Healthcare providers are tasked with setting the right preconditions for patients to want and to be able to use the USD-4D. For patients, this means healthcare providers should always be attuned to their personal preferences when communicating the purpose and function of the USD-4D and when they enter into dialogue with them

Determinants of unbearable suffering in hospice patients who died due to Euthanasia: A retrospective cohort study

In this retrospective study, determinants of unbearable suffering in hospice patients who died due to euthanasia were analyzed. The four dimensions of suffering (physical, psychological, social, and existential) were used as a framework. 28 patients (5% of all admitted patients in nine years) were included. Most patients indicated 3-5 determinants, predominantly a combination of physical (96% of patients) and existential determinants (89%). Fatigue, anorexia, and dry mouth were the most prevalent and severe symptoms. Psychological (21%) and social determinants (4%) were much less often described. The results of this study may be used to assess determinants playing a role in euthanasia requests

Non-pharmacological interventions feasible in the nursing scope of practice for pain relief in palliative care patients: a systematic review

BACKGROUND: Palliative care patients desire more symptom management interventions that are complementary to their medical treatment. Within the multi-professional team, nurses could help support pain management with non-pharmacological interventions feasible for their practice and adaptable to palliative care patients' needs. OBJECTIVES: The objective was to identify non-pharmacological interventions feasible in the nursing scope of practice affecting pain in palliative care patients. DESIGN: A systematic review. DATA SOURCES AND METHODS: A defined search strategy was used in PubMed, CINAHL, PsycINFO, and Embase. Search results were screened double-blinded. Methodological quality was double-appraised with the Joanna Briggs Institute Critical Appraisal Tools. Data were extracted from selected studies and the findings were summarized. The methodological quality, quantity of studies evaluating the same intervention, and consistency in the findings were synthesized in a best-evidence synthesis to rank evidence as strong, moderate, limited, mixed, or insufficient. RESULTS: Out of 2385 articles, 22 studies highlighted non-pharmacological interventions in the nursing scope of practice. Interventions using massage therapy and virtual reality demonstrated most evidentiary support for pain management, while art therapy lacked sufficient evidence. Mindful breathing intervention showed no significant reduction in pain. Hypnosis, progressive muscle-relaxation-interactive-guided imagery, cognitive-behavioral audiotapes, wrapped warm footbath, reflexology, and music therapy exhibited promising results in pain reduction, whereas mindfulness-based stress reduction program, aromatherapy, and aroma-massage therapy did not. CONCLUSION: Despite not all studies reaching significant changes in pain scores, non-pharmacological interventions can be clinically relevant to palliative care patients. Its use should be discussed for its potential value and nurses to be trained for safe practice. Methodologically rigorous research for non-pharmacological interventions in nursing scope of practice for pain relief in palliative care patients is necessary. TRIAL REGISTRATION: The protocol for this study is registered in the International Prospective Register of Systematic Review (PROSPERO registration number: CRD42020196781)

Healthcare professionals’ perceived barriers in providing palliative care in primary care and nursing homes: a survey study

Background: Palliative care in primary care and nursing home settings is becoming increasingly important. A multidimensional palliative care approach, provided by a multiprofessional team, is essential to meeting patients’ and relatives’ values, wishes, and needs. Factors that hamper the provision of palliative care in this context have not yet been fully explored. Objectives: To identify the barriers to providing palliative care for patients at home or in nursing homes as perceived by healthcare professionals. Design: Cross-sectional survey study. Methods: A convenience sample of nurses, doctors, chaplains, and rehabilitation therapists working in primary care and at nursing homes in the Netherlands is used. The primary outcome is barriers, defined as statements with ⩾20% negative response. The survey contained 56 statements on palliative reasoning, communication, and multiprofessional collaboration. Data were analyzed using descriptive statistics. Results: In total, 249 healthcare professionals completed the survey (66% completion rate). The main barriers identified in the provision of palliative care were the use of measurement tools (43%), consultation of an expert (31%), estimation of life expectancy (29%), and documentation in the electronic health record (21% and 37%). In primary care, mainly organizational barriers were identified, whereas in nursing homes, most barriers were related to care content. Chaplains and rehabilitation therapists perceived the most barriers. Conclusion: In primary care and nursing homes, there are barriers to the provision of palliative care. The provision of palliative care depends on the identification of patients with palliative care needs and is influenced by individual healthcare professionals, possibilities for consultation, and the electronic health record. An unambiguous and systematic approach within the multiprofessional team is needed, which should be patient-driven and tailored to the setting

The Impact of Hospice Care Structures on Care Processes: A Retrospective Cohort Study

Background: Palliative care is subject to substantial variations in care, which may be shaped through adapting the organisational structures through which care is provided. Whilst the goal of these structures is to improve patient care, there is a lack of evidence regarding their effect on care processes and patient outcomes. Aims: This study aims to describe the relationship between care structures and the quantity and domains of care processes in hospice care. Design: Retrospective cohort study. Settings/Participants: Data were collected from Dutch hospice patient's clinical records and hospice surveys, detailing hospice structures, patient clinical characteristics and care processes. Results: 662 patients were included from 42 hospices, mean age 76.1 years. Hospices were categorised according to their care structures - structured clinical documentation and multidisciplinary meetings. Patients receiving care in hospices with structured multidisciplinary meetings had an increased quantity of documented care processes per patient on admission through identification (median 4 vs 3, P < .001), medication (2 vs 1, P = .004) and non-medication (1 vs 0, P < .001) interventions, monitoring (2 vs 1, P < .001) and evaluation (0 vs 0, P = .014), and prior to death. Similar increases were identified for patients who received care in hospices with structured documentation upon admission, but these changes were not consistent prior to death. Conclusions: This study details that the care structures of documentation and multidisciplinary meetings are associated with increased quantity and breadth of documentation of care processes in hospice care. Employing these existing structures may result in improvements in the documentation of patient care processes, and thus better communication around patient care

Barriers and facilitators that hospital clinicians perceive to discuss the personal values, wishes, and needs of patients in palliative care: a mixed-methods systematic review

Background: The exploration and monitoring of the personal values, wishes, and needs (VWN) of patients in the palliative phase by hospital clinicians is essential for guiding appropriate palliative care. Objective: To explore the barriers and facilitators concerning communication with patients in the palliative phase about their VWN as perceived by hospital clinicians. Design: A mixed-methods systematic review following the Joanna Briggs Institute guidelines for mixed-method systematic reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines was conducted (PROSPERO ID: CRD42021216693). Data sources and methods: Eight databases, including PubMed, Embase, and CINAHL, were searched without time restrictions. The search string was built using the search Palliative cAre Literature rEview iTeraTive mEthod (PALETTE) framework. Eligible studies focused on (1) hospital clinicians and (2) perceived barriers and facilitators regarding the exploration and monitoring of the VWN of adult patients in the palliative phase. Two researchers independently selected articles and evaluated the quality. Findings were synthesized using a convergent integrated approach. Results: In total, 29 studies were included: 14 quantitative, 13 qualitative, and 2 mixed methods. Five synthesized findings were identified: (1) the clinician’s professional manners, (2) the image formed of the patient and loved ones, (3) the human aspect of being a clinician, (4) the multidisciplinary collaboration, and (5) the contextual preconditions. Most studies seemed focused on communication about treatment decision making. Conclusion: A patient-centered approach seems lacking when clinicians discuss the patient’s VWN, since most studies focused on treatment decision making rather than on the exploration and monitoring of the multidimensional well-being of patients. This review emphasizes the need for the development and integration of a systematic approach to explore and monitor the patients’ VWN to improve appropriate palliative care in hospitals

Who Are Hospice Patients and What Care Is Provided in Hospices?: A Pilot Study

Background: Hospices provide multidimensional care. In the Netherlands, patients with <3 months estimated life expectancy have access to hospice care. Insight into patients admitted to hospices and the care provided is lacking. In preparation for a national multicenter study, a pilot study was performed. Objective: The primary objective was to test the appropriateness of the study procedures and the availability of hospice patient records (HPRs), and patient and care characteristics. Method: A cross-sectional pilot study was performed using a descriptive exploratory design. Sixteen hospices were invited to participate, and HPRs from 8 deceased patients per hospice were selected. Data were collected using self-developed electronic case report forms. Outcomes: (1). Appropriateness of procedures: availability of HPRs and identified barriers and strategies. (2) Availability of patient and care characteristics in HPRs. Results: In total, 104 HPRs of patients from 13 hospices were enrolled. Various types of HPRs were found with different availabilities: nurses’ records were most available (98%) compared to volunteers’ records (62%). Overarching barriers were as follows: ethical issues, lack of knowledge, and lack of communication. Information about the illness was most available (97%), whereas descriptions of experienced symptoms were least available (10%). Conclusion: Collecting HPRs is difficult and time-consuming. Specifically, data from separate records of home care nurses and general practitioners were difficult to come by. Patient and care characteristics were alternately present, which led to an extension of data collection in HPRs to 3 time periods. Piloting is essential to adjust study procedures and outcome measures to ensure a feasible national multicenter hospice study

Towards a Learning Health System for Symptom Management in Hospice Care

The reuse of real-world symptom monitoring data is essential in improving the quality of hospice care. A framework for achieving this is a Learning Health System, in which the development of a well-defined dataset is essential. This paper discusses the challenges in the design of a comprehensive dataset, focusing on variations in two electronic health record systems and divergent care processes