Inpatient Palliative Care Unit Research Articles

Death Preparation and Quality of Life amongst Family Caregivers of Terminal Cancer Patients: A Multicentre Cross-sectional Study

Objectives: Caring for ill cancer patients imposes a considerable burden on families, significantly reducing quality of life (QoL). This study examined the association between death preparation and QoL amongst family caregivers (FCs) of terminally ill patients with cancer in South Korea. Materials and Methods: A multicentre cross-sectional survey using questionnaires was conducted in nine inpatient palliative care units in South Korea. Data from 170 FCs who answered questions about preparedness for death were analysed. A stepwise multivariate logistic model was used to identify the factors associated with FCs’ QoL. The estimated QoL scores were also compared between the groups according to preparedness level. Results: Factors associated with high QoL included old age, fewer daily caregiving hours, fewer caregiving durations and practical preparedness for death. The well-prepared group had significantly higher QoL scores in the burdensome domain. This significant association remained robust in FCs with low educational or social support levels, poor resilience and dysfunctional families. Conclusion: Practically, well-prepared FCs experienced a high QoL in hospice care settings. FCs are likely to benefit from assessment and encouragement of their preparedness for death.

Descriptive Analysis of Dexmedetomidine's Utility in a Palliative Care Unit at the End of Life.

Context: Pain and symptom management at the end of life (EoL) can pose unique challenges, particularly when symptoms are refractory to conventional methods. Dexmedetomidine, originally approved for sedation in ventilated patients, has been demonstrated to be beneficial in pain management and palliative care settings by functioning as an alpha-2 agonist. Methods: A retrospective review of inpatient palliative care unit (IPU) records from January 2020 to December 2023 was conducted. Twenty-five adult patients receiving continuous dexmedetomidine for refractory pain at the EoL were identified. These patients were further evaluated for concurrent opioid, benzodiazepine, and chlorpromazine usage. Results: Patients experienced predominantly cancer-related pain, and had a median infusion duration of 5 days. Dexmedetomidine's initial dosing differed between the intensive care unit (ICU) and IPU settings. There was a trend toward a decreased opioid requirement 24 hours after initiation. Patients transferred from the ICU showed a progressive increase in opioid use. Conclusion: This study contributes to understanding dexmedetomidine's role in managing refractory symptoms at the EoL in the palliative care setting.

Exploring Environmental Considerations for Terminally Ill Pediatric Patients in Palliative Care Inpatient Units: A Narrative Review.

Background: The end-of-life experience is significantly influenced by the surrounding environment, emphasizing the importance of exploring built environmental factors in palliative care, especially for pediatric patients. As the majority of end-of-life individuals are elderly or adults, most studies have focused on the environment for this demographic. However, it is essential to recognize that children and adolescents may have distinct needs in this regard. Aim: This narrative review aims to explore the impact of the built environment on pediatric end-of-life patients in inpatient units within palliative care settings. Method: A comprehensive search was conducted across four key databases (PubMed, MEDLINE, PsycINFO, and CINAHL) to identify relevant articles. The screening process commenced with an initial assessment of article titles and abstracts, followed by a thorough examination of full-text studies that met the inclusion criteria. Data synthesis involved thematic analysis facilitated by NVIVO software and informed by the findings extracted from selected literature. Results: The review identified 22 studies meeting inclusion criteria, revealing key insights into environmental considerations in pediatric palliative care. Four themes emerged, highlighting the significance of activities and play environments, accommodation spaces for patients, supportive spaces for families, and outdoor and green spaces. Conclusions: Acknowledging limited research on architectural aspects and reliance on family and staff perspectives, future studies should prioritize understanding pediatric patients' perspectives, particularly adolescents. The study underscores the importance of enhancing environmental design in pediatric palliative care to meet the unique needs of patients and their families.

Did the Palliative Care Outcomes Collaboration (PCOC) program lead to improved end-of-life care quality and reduced non-beneficial treatments?

Palliative Care Outcomes Collaboration (PCOC) is an internationally recognized program developed in Australia. Taiwan became the first country in Asia to implement PCOC in 2020. There is little research on the impact of PCOC in Asia. We sought to examine the effects of the Taiwan PCOC on palliative outcomes. The study analyzed the impact of PCOC with a retrospective cohort design. The hypotheses were that PCOC could improve end-of-life care quality and reduce non-beneficial treatments. The study enrolled patients with terminal illnesses from the inpatient palliative care units. General characteristics of participants were collected. Exclusion criteria were people without a diagnosis of terminal illness, aged 20 and younger, or with missing data. The study collected 1,121 patients, 555 in the PCOC comparison group and 566 in the intervention group. Most patients were with terminal cancer (88.58%). The rates of hospital deaths in the PCOC and non-PCOC groups were 68.73% vs. 74.95% (P = 0.021). A multivariable logistic regression model, adjusting for age, sex, Charlson comorbidity index, and terminal cancer status, was utilized. The PCOC intervention significantly decreased hospital deaths (OR = 0.26, 95%CI 0. 16-0.41, P < 0.001). PCOC in Taiwan significantly reduced hospital deaths among terminal patients, possibly due to effective symptom management and improved communication via the use of patient-reported outcomes. Further research is needed to support PCOC implementation in Asia and investigate collaboration programs' impact on end-of-life care quality and non-beneficial treatments.

The safety and effectiveness of naldemedine for opioid-induced constipation in patients with advanced cancer in real-world palliative care settings: a multicenter prospective observational study.

In this study, we aimed to evaluate the safety and effectiveness of naldemedine for treating opioid-induced constipation (OIC) in patients with advanced cancer, who are receiving palliative care, and particularly explored its early effects. Palliative care teams and inpatient palliative care units across 14 institutions in Japan were included in this multicenter, prospective, observational study. Patients who were newly prescribed a daily oral dose of 0.2mg naldemedine were enrolled. The spontaneous bowel movement (SBM) within 24h after the first dose of naldemedine was considered the primary outcome, whereas, the secondary outcomes included weekly changes in SBM frequency and adverse events. A total of 204 patients were enrolled and 184 completed the 7-day study. The average age of the participants (103 males, 101 females) was 63 ± 14years. The primary cancer was detected in the lungs (23.5%), gastrointestinal tract (13.7%), and urological organs (9.3%). A considerable proportion of patients (34.8%) had ECOG performance status of 3-4. Most patients were undergoing active cancer treatment, however, 40.7% of the patients were receiving the best supportive care. Within 24h of the first naldemedine dose, 146 patients (71.6%, 95% CI: 65.4-77.8%) experienced SBMs. The weekly SBM counts increased in 62.7% of the participants. The major adverse events included diarrhea and abdominal pain, detected in 17.6% and 5.4% of the patients, respectively. However, no serious adverse events were observed. Conclusively, naldemedine is effective and safe for OIC treatments in real-world palliative care settings. UMIN000031381, registered 20/02/2018.

Views of admitted palliative care patients and their clinicians on corneal donation discussions: a qualitative content analysis of semi-structured interviews

BackgroundThere is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units.MethodsA qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia.ResultsVery few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur.ConclusionsFindings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.

Adding spontaneity to organizations – what hospice volunteers contribute to everyday life in German inpatient hospice and palliative care units: a qualitative study

BackgroundVolunteers have always been integral to hospice and palliative care. However, their roles have been left relatively undefined and broad.AimThis study aims to examine the role of hospice volunteers in German inpatient hospice and palliative care. The question we seek to answer is: What do hospice volunteers contribute to everyday life in inpatient hospice and palliative care units?MethodsWe undertook a multicenter, on-site qualitative interview study, utilizing problem-centered interviews with 16 volunteers from five inpatient hospice units and one hospital palliative care unit. Interviews were analyzed using grounded theory.ResultsAnalysis of the interviews revealed three typical characteristics of how hospice volunteers’ describe their own role: (1) performing small acts of kindness, (2) creating a family-like atmosphere, (3) expecting emotional experiences. A common theme across all categories is the emphasis on spontaneous actions and personal experiences. The process of dying becomes an experience interpreted by volunteers as enriching, as a gift, as a “teacher”.ConclusionGranting hospice volunteers freedom to act spontaneously and intuitively benefits hospice and palliative care delivery. Organizations should leave sufficient room for spontaneity in order to involve volunteers effectively. Open and unstandardized roles facilitate dynamic work practices.

A comparison of the prevalence of dry mouth and other symptoms using two different versions of the Edmonton Symptom Assessment System on an inpatient palliative care unit

BackgroundSymptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an “Other problem”.MethodsThis retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one “Other problem”. Seven similar symptoms were listed in both versions.ResultsIn 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and < 1%, respectively. Although ESAS-r severity scores for these three symptoms were higher than on ESAS-m, differences did not reach statistical significance.ConclusionWe identified significant differences in patient symptom reporting based on whether symptoms like dry mouth, obstipation and sleep problems were specifically assessed or had to be added by patients as an “Other problem”.

Longitudinal symptom profile of palliative care patients receiving a nurse-led end-of-life (PEACH) programme to support preference to die at home

ObjectivesTailored models of home-based palliative care aimed to support death at home, should also ensure optimal symptom control. This study aimed to explore symptom occurrence and distress over time in...

Evidence-Based Pain Assessment in Nonverbal Palliative Care Patients

BackgroundCentral to palliative care is the early assessment and treatment of pain, whether physical, psychosocial, or spiritual. Nonverbal palliative care patients are at risk for inadequate pain assessment leading to prolonged suffering. AimsThe purpose of this project was to implement and evaluate an evidence-based pain assessment tool for nonverbal palliative care patients. DesignThe Iowa Model Revised: Evidence-Based Practice to Promote Excellence in Healthcare and the Implementation Strategies for Evidence-Based Practice Guide provided the guiding frameworks. SettingsOn a six-bed adult inpatient Palliative Care Unit (PCU). Participants/SubjectsNonverbal palliative care patients. MethodsEvidence supported use of the Multidimensional Objective Pain Assessment Tool (MOPAT) for nonverbal patients receiving palliative care. During an eight-week pilot, nurses recorded pain assessments on a paper form and trended pain scores over a 24-hour period. Evaluation included knowledge, attitudes, and behaviors pre- and post-pilot and was subsequently used in a Precision Implementation Approach to promote adoption. ResultsNurses’ attitudes toward palliative care pain assessment improved in all items on the evaluation tools. Pain was assessed using MOPAT for 74% of nonverbal palliative care patients and 88% of patients had linked pain interventions to MOPAT scores. ConclusionsMOPAT is the only valid evidence-based pain assessment tool for nonverbal patients receiving palliative care. This project led to successful adoption of the MOPAT within the PCU.

Managing understandings of palliative care as more than care immediately before death: Evidence from observational analysis of consultations.

Evidence suggests that public, and some professional, understandings of palliative care are limited to care provided immediately before death, which contrasts palliative care's scope as care provided across a range of illness stages. To examine how clinicians manage patients'understandings of palliative care during initial consultations. Initial palliative care consultations were video-recorded and analysed using conversation analytic methods. Consultations were recorded in a specialist palliative care outpatient unit within an Australian public hospital. Participants included 20 newly referred patients and their families, and three palliative care clinicians. During initial consultations, it was observed that specialist palliative care clinicians frequently managed the possibility that patients may understand palliative care as limited to care provided immediately before death. Clinicians used recurrent practices that seemed designed to pre-empt and contradict patients'possible narrow understandings. When discussing the palliative care inpatient unit, clinicians recurrently explained inpatient care could include active treatment and referred to the possibility of being discharged. These practices contradict possible understandings that future admission to the inpatient unit would be solely for care immediately before death. The findings demonstrate that palliative care clinicians are aware of possible narrow understandings of their discipline among members of the public. The practices identified show how clinicians pre-emptively manage these understandings to patients newly referred to palliative care. These findings highlight scope for greater partnership with teams referring patients to palliative care, to assist patients in understanding the range of reasons for their referral. The observational method of conversation analysis provides direct insight into matters that are relevant for patients, as raised in their consultations with clinicians. This direct evidence enables analysis of their lived experience, as it occurs, and grounds analysis in observable details of participants'conduct, rather than interpretations of subjective experiences. The patients'contributions, therefore, were to allow observation into their initial palliative care consultations.

Implementation of the Richmond Agitation-Sedation Scale (palliative version) on an inpatient palliative care unit

BackgroundThe Richmond Agitation-Sedation Scale – Palliative version (RASS-PAL) tool is a brief observational tool to quantify a patient’s level of agitation or sedation. The objective of this study was to implement the RASS-PAL tool on an inpatient palliative care unit and evaluate the implementation process.MethodsQuality improvement implementation project using a short online RASS-PAL self-learning module and point-of-care tool. Participants were staff working on a 31-bed inpatient palliative care unit who completed the RASS-PAL self-learning module and online evaluation survey.ResultsThe self-learning module was completed by 49/50 (98%) of regular palliative care unit staff (nurses, physicians, allied health, and other palliative care unit staff). The completion rate of the self-learning module by both regular and casual palliative care unit staff was 63/77 (82%). The follow-up online evaluation survey was completed by 23/50 (46%) of respondents who regularly worked on the palliative care unit. Respondents agreed (14/26; 54%) or strongly agreed (10/26; 38%) that the self-learning module was implemented successfully, with 100% agreement that it was effective for their educational needs.ConclusionUsing an online self-learning module is an effective method to engage and educate interprofessional staff on the RASS-PAL tool as part of an implementation strategy.

The caregiver’s perspective on end-of-life inpatient palliative care: a qualitative study

Introduction Understanding patient and caregiver experience is key to providing person-centered care. The palliative care approach includes holistic assessment and whole-person care at the end of life, that also involves the patient’s family and loved ones. The aim of this study was to describe the way that family caregivers experienced patients’ deaths during their loved ones’ last hospital admission, comparing inpatient palliative care (PCU) and non-palliative care (Non-PCU) units. Methods A qualitative case study approach was implemented. Family caregivers of terminally ill patients admitted to the Infanta Elena Hospital (Madrid, Spain) between 2016 and 2018 were included using purposeful sampling. Eligible caregivers were first-degree relatives or spouses present during the patient’s last hospital admission. Data were collected via in-depth interviews and researchers’ field notes. Semi-structured interviews with a question guide were used. A thematic inductive analysis was performed. The group of caregivers of patients admitted to the PCU unit and the group of caregivers of patients admitted to Non-PCU were analyzed separately, through a matrix. Results In total 24 caregivers (12 from the PCU and 12 from Non-PCU units) were included. Two main themes were identified: caregivers’ perception of scientific and technical appropriateness of care, and perception of person-centred care. Scientific appropriateness of care was subdivided into two categories: diagnostic tests and treatment, and symptom control. Perception of person-centred care was subdivided as: communication, emotional support, and facilitating the farewell process. Caregivers of patients admitted to a PCU unit described their experience of end-of-life care as positive, while their Non-PCU unit counterparts described largely negative experiences. Conclusions PCU provides a person-centered approach to care at the end of life, optimizing treatment for patients with advanced disease, ensuring effective communication, establishing a satisfactory professional relationship with both patients and their loved ones, and facilitating the farewell process for family caregivers.

The effect of implementing the COMFORT communication model on communication skills of nursing students.

Effective communication as a key component of palliative care requires sufficient knowledge and experience to make nursing interventions successful. This quasi-experimental study was conducted to determine the effectiveness of the COMFORT communication model as an intervention to improve student nurses' communication skills while they are under clinical training in specialist palliative care inpatient units. The population sample included 86 student nurses who were randomly assigned into two groups of 40. The intervention group received training on communication skills using the COMFORT communication model. Nine lectures were delivered online or offline; the lectures lasted between 25 to 60 minutes. The control group received the conventional educational programme about communication with patients and families, according to the curriculum of the bachelor's degree in nursing. Data were collected using the Communication Skills Questionnaire and Communication Skills Attitude Scale and analysed using IBM® SPSS® Statistics 22.0. The findings showed that, after the implementation of COMFORT communication model, there was a statistically significant difference in communication skills between the intervention group (122.95±9.36) and the control group (110.1±8.92). There was also a significant difference in attitudes toward communication skills between the intervention group (90.25±8.86) and the control group (90.85±9.15) (P=0.0001). The findings of the study revealed that the COMFORT Communication model created significant statistical differences in the student's attitude, knowledge and communication skills. Novice nurses sometimes struggle with the level of communication skills needed when caring for patients with an end-stage illness. The implementation of the COMFORT communication model significantly improved communication skills and attitudes toward communication. Due to the need to establish effective communication as the core of nursing practice, the implementation of this training programme is recommended for students and qualified nurses, particularly when providing palliative care.

The Validation of the Chinese (Cantonese) Version of the Patient Dignity Inventory in a Hong Kong Palliative Care Setting.

To assess and address a patient's dignity and dignity-related distress would greatly benefit patients who have advanced stage disease. The Patient Dignity Inventory (PDI) allows clinicians to identify sources of dignity-related distress for patients. The PDI should be evaluated for use in a local Chinese setting. To validate the Patient Dignity Inventory Hong Kong-Chinese (Cantonese) version (PDI-HK) and assess the psychometric properties in patients in an inpatient palliative setting in Hong Kong. The English version of the PDI was translated and back translated, then reviewed by a panel including a clinician, clinical psychologist, and nurse clinician. Recruited patients would complete the PDI-HK, the Chinese version of Hospital Anxiety and Depression Scale (HADS), the McGill Quality of Life Questionnaire-Hong Kong (MQOL-HK), and the Edmonton Symptom Assessment Scale. Psychometric properties including internal consistency, concurrent validity, test-retest reliability, and factor analysis were tested. A total of 97 consecutive patients were recruited into the study. The mean PDI score was 51.85 (range 25-102). Cronbach's alpha was 0.953 (p < 0.001). Concurrent validity with the HADS and MQOL-HK questionnaire was established. Factor analysis showed four factors, namely Existential Distress, Physical Change and Function, Psychological Distress, and Support. These were similar to previous PDI validation studies. The PDI was translated into Chinese (Cantonese) and applied in an inpatient palliative care unit in Hong Kong, with adequate validity. The PDI-HK version can be further used in a larger Chinese population to assess and address dignity-related issues.

Facilitators and barriers in oncology clinical practice influencing nurses' completion of GRASP Workload Measurement System to ensure patient-centred care.

Hospital administrators have a great interest in obtaining a valid and reliable nursing workload measurement to help determine the hours of care needed per patient; one such method available is the GRASP Workload Measurement System. At Sunnybrook Health Sciences Centre, nurses' GRASP compliance and accuracy varies and often does not meet the target of 90%. The target assists the organization in estimating ongoing nursing workload and patients' care needs, while ensuring the provision of safe and appropriate care that is fiscally responsible. The objective of the quality initiative reported in this paper was to identify the facilitators and barriers that influence nurses' completion of GRASP. The quality improvement project was conducted using a mixed-method design with a sample of 28 nurses working in oncology acute care and palliative care inpatient units. The Theoretical Domain Framework (TDF), often used in behaviour change studies, was used in designing the questionnaire survey and interview questions that listed pertinent and measurable factors that may influence nurses' GRASP completion. Facilitators included: nurses' knowledge about the role GRASP has in funding and staffing levels, job responsibility, and perception of GRASP as a potential tool to organize work. Barriers identified by nurses included insufficient GRASP knowledge, limited access to workstations and computers, GRASP tool elements not capturing the complexity of the nursing work, time constraints, increased patients' acuity, and care demands. In addition to the Theoretical Domain Framework, the Normalization Process Theory was used to guide the implementation and evaluation of the recommendations to enhance nurses' GRASP compliance and adherence practice.

Patient-reported ability to walk 4m and to wash: New clinical endpoints and predictors of survival in patients with pre-terminal cancer.

Maintaining the ability to perform self-care is a critical goal in patients with cancer. We assessed whether the patient-reported ability to walk 4m and wash oneself predict survival in patients with pre-terminal cancer. We performed a prospective observational study on 169 consecutive hospitalized patients with cancer (52% female, 64±12years) and an estimated 1-12months prognosis at an academic, inpatient palliative care unit. Patients answered functional questions for 'today', 'last week', and 'last month', performed patient-reported outcomes (PROs), and physical function assessments. Ninety-two (54%) patients reported the ability to independently walk 4m and 100 (59%) to wash 'today'. The median number of days patients reported the ability to walk 4m and wash were 6 (IQR 0-7) and 7 (0-7) days ('last week'); and 27 (5-30) and 26 (10-30) days ('last month'). In the last week, 32% of patients were unable to walk 4m on every day and 10% could walk on 1-3days; 30% were unable to wash on every day and 10% could wash on 1-3days. In the last months, 14% of patients were unable to walk 4m on every day and 10% could only walk on 1-10days; 12% were unable to wash on every day and 11% could wash on 1-10days. In patients who could walk 'today' average 4m gait speed was 0.78±0.28m/s. Patients who reported impaired walking and washing experienced more symptoms (dyspnoea, exertion, and oedema) and decreased physical function (higher Eastern Cooperative Oncology Group Performance Status, and lower Karnofsky Performance Status and hand-grip strength [unable vs. able to walk 'today': 205±87 vs. 252±78 Newton, P=0.001; unable vs. able to wash 'today': 204±86 vs. 250±80 Newton, P=0.001]). During the 27months of observation, 152 (90%) patients died (median survival 46days). In multivariable Cox proportional hazards regression analyses, all tested parameters were independent predictors of survival: walking 4m 'today' (HR 0.63, P=0.015), 'last week' (per 1day: HR 0.93, P=0.011), 'last month' (per 1day: HR 0.98, P=0.012), 4m gait speed (per 1m/s: HR 0.45, P=0.002), and washing 'today' (HR 0.67, P=0.024), 'last week (per 1 day HR 0.94, p=0.019), and 'last month' (per 1day HR 0.99, P=0.040). Patients unable to walk and wash experienced the shortest survival and most reduced functional status. In patients with pre-terminal cancer, the self-reported ability to walk 4m and wash were independent predictors of survival and associated with decreased functional status.

Bright Light Therapy for Cancer-related Fatigue in a Palliative Care Unit: A Feasibility Study

Cancer related fatigue (CRF) is a very common symptom among palliative care patients as over 80% of them reported at least a moderate level of fatigue measured by the Brief Fatigue Inventory (BFI).1 Locally, we found that more than half of the patients in the palliative care in-patient unit (PCU) complained of fatigue,2 which continued to trouble 41% of patients in their last two weeks of life.3 Among the various treatments for fatigue, bright light therapy (BLT) emerged as a potentially useful non-pharmacological treatment.

“More life and more days”—patient and care characteristics in a specialized acute pediatric palliative care inpatient unit

Only a few acute hospital inpatient units dedicated to pediatric palliative care (PPC) patients exist today. Clinical data on the patients and care provided at specialized acute PPC inpatient units (PPCUs) are scarce. This study aims at describing patient and care characteristics on our PPCU to learn about the complexity and relevance of inpatient PPC. A retrospective chart analysis was performed on the 8-bed PPCU of the Center for Pediatric Palliative Care of the Munich University Hospital, including demographic, clinical, and treatment characteristics (487 consecutive cases; 201 individual patients; 2016–2020). Data were analyzed descriptively; the chi-square test was used for comparisons. Patients’ age (1–35.5 years, median: 4.8 years) and length of stay (1–186 days, median 11 days) varied widely. Thirty-eight percent of patients were admitted repeatedly (range 2–20 times). Most patients suffered from neurological diseases (38%) or congenital abnormalities (34%); oncological diseases were rare (7%). Patients’ predominant acute symptoms were dyspnea (61%), pain (54%), and gastrointestinal symptoms (46%). Twenty percent of patients suffered from > 6 acute symptoms, 30% had respiratory support incl. invasive ventilation, 71% had a feeding tube, and 40% had full resuscitation code. In 78% of cases, patients were discharged home; 11% died on the unit.Conclusion: This study shows the heterogeneity, high symptom burden, and medical complexity of the patients on the PPCU. The high dependency on life-sustaining medical technology points to the parallelism of life-prolonging and palliative treatments that is typical for PPC. Specialized PPCUs need to offer care at the intermediate care level in order to respond to the needs of patients and families.What is Known:• Pediatric patients in outpatient PPC or hospices present with a variety of clinical syndromes and different levels of complexity and care intensity.• There are many children with life-limiting conditions (LLC) in hospitals, but specialized PPC hospital units for these patients are rare and poorly described.What is New:• Patients on a specialized PPC hospital unit show a high symptom burden and a high level of medical complexity, including dependency on medical technology and frequent full resuscitation code.• The PPC unit is mainly a place for pain and symptom management as well as crisis intervention, and needs to be able to offer treatment at the intermediate care level.

Terminally ill patients’ and their relatives’ experiences and behaviors regarding complementary and alternative medicine utilization in hospice palliative inpatient care units: a cross-sectional, multicenter survey

BackgroundTerminally ill patients often experience exacerbations of diseases that render mainstream medicine ineffective in relieving symptoms, prompting attempts at complementary and alternative medicine (CAM). This study collected data from terminally ill patients and their relatives to determine differences between CAM use, behavioral patterns, and perceptions of health information about CAM.MethodsA cross-sectional design using a self-administered questionnaire was adopted. Eight medical institutions in Taiwan with inpatient hospice palliative care units were chosen. Ninety-two terminally ill patients and 267 relatives met the inclusion criteria. The questions concerned the experience of CAM use, the kinds of products/services CAM provided, the purpose of CAM use, the source of CAM information, and the perceptions and attitudes toward CAM.ResultsBoth terminally ill patients and their relatives have a high proportion of lifetime and one-year prevalence of CAM use (88.0% vs. 88.4%; p = 0.929). CAM use for musculoskeletal and neurological discomfort is higher among terminally ill patients than among their relatives. Relatives/friends are the most frequent sources of information on CAM (53.3% vs. 62.2%; p = 0.133). The percentage of terminally ill patients who discontinued mainstream medical treatment because of CAM use was higher than that of their relatives (18.5% vs. 9.3%; p = 0.026). More than half the terminally ill patients and their relatives had never been asked about CAM by medical staff (64.1% vs. 66.7%), nor had they informed medical professionals about the use of CAM products and services (63% vs. 66.9%). Random inquiries by medical professionals may be associated with increased disclosure of CAM use (terminally ill patients: odds ratio, 9.75; 95% confidence interval, 1.97–48.35 vs. relatives: odds ratio, 5.61; 95% confidence interval, 2.66–11.83).ConclusionsThe high prevalence and concealment of CAM use in terminally ill patients should be considered. Medical professionals should establish a friendly and barrier-free communication model, encourage patients to share CAM experiences, and provide evidence-based information on the use of CAM products and services, to reduce the potential damage caused by harmful use.