Background: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients’ medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents’ LYOL.
Methods: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent’s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach’s alpha.
Results: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed =5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item” Given a copy of their treatment plan” highest (mean 3.96), whereas “encouragement to get to a specific group or class to cope with the condition” (mean 1.74) was rated lowest. Cronbach’s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett’s test for sphericity p < 0.001), with items’ factor loadings ranging from 0.46 to 0.82.
Conclusions: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.
The purpose of this quality improvement initiative was to analyze how nurses record their workload in the GRASP Workload Measurement System and document the end-of-life nursing care provided to imminently dying patients. The analysis was done in conformity with the Comfort Measures Order Set in our hospital. Nursing documentation was examined (n = 4 patient records) covering 15 oncology nursing shifts. Nurses are expected to complete the GRASP tool after each shift for all the patients in their care. It is presumed that nurses' workload data will be reported accurately and reliably, as well as interrelate with their nursing documentation. Workload audits are conducted routinely to ensure accuracy. Interrater Reliability Monitoring was used to analyze the degree of agreement between the ratings performed on the audit of the completed GRASP tool and the nursing documentation on end-of-life care delivered. The GRASP compliance rate was 66.6% and GRASP-documentation accuracy rate was 60-70%. These observations were below the established target of 90%. The results provide insight regarding any gaps between documentation and GRASP at end of life.
Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.
Methods: Mortality follow-back postal survey.
Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).
Participants: Informal carers (ICrs) of decedents who had received palliative care.
Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).
Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.
Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.
Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
Judaism, one of the world's oldest religions, claims an estimated 14.3 million members worldwide. There is great diversity in terms of identity, practice, and belief among people who identify as Jewish. As of 2017, 40% of the global Jewish community resided in the United States, making it essential for palliative care clinicians to understand religious and cultural issues related to their serious illness care. In this article, we will discuss 10 important concepts relevant to the inpatient care, advance care planning, and bereavement needs of Jewish patients and families.
Les éditeurs de la revue Etudes ont compilé une série d'articles publiés entre 2005 et 2011 sur la notion de "prendre soin" :
-Introduction d'Agatha Zielinski : Que signifie "prendre soin" ?
-Pour une médecine de l'incurable, Céline Lefève et Jean-Christophe Mino (Juin 2008)
-Violence de la maladie, entretien avec Claire Marin (Juillet 2008)
-Former de vrais thérapeutes, Jean-Christophe Mino, Marie-Odile Frattini, Emmanuel Fournier (Février 2011)
-L'éthique du Care, une nouvelle façon de prendre soin, Agatha Zielinski (décembre 2010)
-Postface de Patrick Verspieren, "Le pacte de soin" à partir de l'article "Malade et médecin partenaires" (Janvier 2005)
CONTEXT: Certain treatments are potentially inappropriate when administered to nursing homes residents at the end of life and should be carefully considered. An international comparison of potentially inappropriate treatments allows insight into common issues and country-specific challenges of end-of-life care in nursing homes and helps direct health care policy in this area.
OBJECTIVES: To estimate the prevalence of potentially inappropriate treatments in the last week of life in nursing home residents, and analyze the differences in prevalence between countries.
METHODS: A cross-sectional study of deceased residents in nursing homes (2015) in six European countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. Potentially inappropriate treatments included: enteral administration of nutrition, parental administration of nutrition, artificial fluids, resuscitation, artificial ventilation, blood transfusion, chemotherapy/radiotherapy, dialysis, surgery, antibiotics, statins, antidiabetics, new oral anticoagulants. Nurses were questioned about whether these treatments were administered in the last week of life.
RESULTS: We included 1,384 deceased residents from 322 nursing homes. In most countries, potentially inappropriate treatments were rarely used, with a maximum of 18.3% of residents receiving at least one treatment in Poland. Exceptions were antibiotics in all countries (between 11.3% in Belgium and 45% in Poland), artificial nutrition and hydration in Poland (54.3%) and Italy (41%) and antidiabetics in Poland (19.7%).
CONCLUSION: Although the prevalence of potentially inappropriate treatments in the last week of life was generally low, antibiotics were frequently prescribed in all countries. In Poland and Italy, the prevalence of artificial administration of food/fluids in the last week of life was high, possibly reflecting country differences in legislation, care organization and culture, and the palliative care competences of staff.
Background: A Do Not Resuscitate (DNR) order should only impede the performance of cardiopulmonary resuscitation in case of cardiac or respiratory arrest; it should not interfere with any other treatment decisions.
Aims: To study the impact of DNR order placement on daily clinical care of patients.
Methods: This was a retrospective cohort study of 72 patients in a tertiary care centre in Saudi Arabia. Daily clinical care measures were collected for 2 weeks prior and 2 weeks after DNR order placement and included vital signs, nursing care, comfort measures, documentation, visits by senior and junior physicians, and tests completed.
Results: Malignancy was the most common diagnostic category (43.1%). There was a significant reduction in vital signs documentation, tests completed, documentation, and visits by physicians after DNR orders, with no change in nursing care and comfort measures. No differences were seen for place of DNR order (intensive care unit vs medical ward), category of disease, or sex, but there were differences for documentation (more in females) and vital signs (more in males). More vital signs were documented and more tests were done in patients who survived compared to those who died. Regression analysis showed that the frequency of post-DNR order vital signs measurements and investigations done was not related to sex, age, diagnosis, time from admission to DNR order, or location of patients. Time to death was only related to sex and post-DNR order summary documentation.
Conclusions: Placement of DNR orders significantly reduced vital signs measurements, investigations done, documentation and visits by physicians but not nursing care and comfort measures.
BACKGROUND: Hospitalisation rates for the older population have been increasing with end-of-life care becoming a more medicalised and costly experience. There is evidence that some of these patients received non-beneficial treatment during their final hospitalisation with a third of the non-beneficial treatment duration spent in intensive care units. This study aims to increase appropriate care and treatment decisions and pathways for older patients at the end of life in Australia. This study will implement and evaluate a prospective feedback loop and tailored clinical response intervention at three hospitals in Queensland, Australia.
METHODS: A stepped-wedge cluster randomised trial will be conducted with up to 21 clinical teams in three acute hospitals over 70 weeks. The study involves clinical teams providing care to patients aged 75 years or older, who are prospectively identified to be at risk of non-beneficial treatment using two validated tools for detecting death and deterioration risks. The intervention's feedback loop will provide the teams with a summary of these patients' risk profiles as a stimulus for a tailored clinical response in the intervention phase. The Consolidated Framework for Implementation Research will be used to inform the intervention's implementation and process evaluation. The study will determine the impact of the intervention on patient outcomes related to appropriate care and treatment at the end of life in hospitals, as well as the associated healthcare resource use and costs. The primary outcome is the proportion of patients who are admitted to intensive care units. A process evaluation will be carried out to assess the implementation, mechanisms of impact, and contextual barriers and enablers of the intervention.
DISCUSSION: This intervention is expected to have a positive impact on the care of older patients near the end of life, specifically to improve clinical decision-making about treatment pathways and what constitutes appropriate care for these patients. These will reduce the incidence of non-beneficial treatment, and improve the efficiency of hospital resources and quality of care. The process evaluation results will be useful to inform subsequent intervention implementation at other hospitals.
CONTEXT: The impact of hospice care services on the utilisation of life-sustaining treatments during end-of-life care in terminally ill patients has not been extensively studied.
OBJECTIVES: To determine the impact of hospice care services on the utilisation of life-sustaining treatments during the last three months of life among cancer patients.
METHODS: This nationwide population-based cohort study identified adults with cancer diagnosis from the Taiwan Registry for Catastrophic Illness, 2006-2016. Life-sustaining treatments included cardiopulmonary resuscitation, intubation, mechanical ventilation support, nasogastric tube feeding, and total parenteral nutrition. Hospice care services consisted of hospice inpatient care, hospice-shared care, and hospice home care. The association of hospice care services with the utilisation of life-sustaining treatments was determined using multiple logistic regression.
RESULTS: Of 516,409 cancer patients, 310,722 (60.2%) patients utilised life-sustaining treatments during the last three months of life. After adjusting for covariates, patients with hospice care services were less likely to receive life-sustaining treatments during the last 3 months of life than those without the services (adjusted odds ratio [AOR]=0.70, 95% confidence interval [CI]: 0.69-0.71). While type of life-sustaining treatments considered, hospice care services were associated with a lower likelihood of receiving cardiopulmonary resuscitation (AOR=0.125, 95% CI: 0.118-0.131), endotracheal intubation (AOR=0.204, 95% CI: 0.199-0.210), mechanical ventilation support (AOR=0.265, 95% CI: 0.260-0.270), nasogastric tube feeding (AOR=0.736, 95% CI: 0.727-0.744), and total parenteral nutrition (AOR=0.86, 95% CI: 0.84-0.88).
CONCLUSION: Hospice care services were associated with a lower likelihood of receiving life-sustaining treatments during the last three months of life in cancer patients.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Context/Objective: Essential indicators of high-quality end-of-life care in intensive care units (ICUs) have been established but examined inconsistently and predominantly with small samples, mostly from Western countries. Our study goal was to comprehensively measure end-of-life-care quality delivered in ICUs using chart-derived process-based quality measures for a large cohort of critically ill Taiwanese patients.
Methods: For this observational study, patients with APACHE II score =20 or goal of palliative care and with ICU stay exceeding three days ( N = 326) were consecutively recruited and followed until death.
Results: Documentation of process-based indicators for Taiwanese patients dying in ICUs was variable (8.9%–96.3%), but high for physician communication of the patient's poor prognosis to his/her family members (93.0%), providing specialty palliative-care consultations (73.3%), a do-not-resuscitate order in place at death (96.3%), death without cardiopulmonary resuscitation (93.5%), and family presence at patient death (76.1%). Documentation was infrequent for social-worker involvement (8.9%) and interdisciplinary family meetings to discuss goals of care (22.4%). Patients predominantly (79.8%) continued life-sustaining treatments (LSTs) until death and died with full life support, with 88.3% and 58.9% of patients dying with mechanical ventilation support and vasopressors, respectively.
Conclusions: Taiwanese patients dying in ICUs heavily used LSTs until death despite high prevalences of documented prognostic communication, providing specialty palliative-care consultations, having a do-not-resuscitate order in place, and death without cardiopulmonary resuscitation. Family meetings should be actively promoted to facilitate appropriate end-of-life-care decisions to avoid unnecessary suffering from potentially inappropriate LSTs during the last days of life.
OBJECTIVES: PACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death.
DESIGN: Secondary analysis of the PACE cluster randomized controlled trial (ISRCTN14741671). Data were collected on deaths over the previous 4 months via questionnaires at baseline and postintervention.
SETTING AND PARTICIPANTS: Questionnaires were completed by the nurse/care-assistant most involved from 78 nursing homes in 7 European Union countries.
MEASURES: We measured number of emergency department visits, hospital admissions, length of hospital stay, and place of death. Baseline and postintervention scores between intervention and control groups were compared, and we conducted exploratory mixed-model analyses. We collected 551 out of 610 questionnaires at baseline and 984 out of 1178 at postintervention in 37 intervention and 36 control homes.
RESULTS: We found no statistical significant effects of the program on emergency department visits [odds ratio (OR) = 1.38, P = .32], hospital admissions (OR = 0.98, P = .93), length of hospital stay (geometric mean difference = 0.85, P = .44), or place of death (OR = 1.08, P = .80).
CONCLUSIONS AND IMPLICATIONS: We found no effect of the PACE program on either hospital use in the last month of life or place of death. Although this may be related to implementation problems in some homes, the program might also require a more specific focus on managing acute end-of-life situations and a closer involvement of general practitioners or specialist palliative care services to influence hospital use or place of death.
Objective: Patients with cancer face numerous problems at the end of their lives, which makes palliative care necessary for a peaceful death. Considering the important role nurses play in the provision of end-of-life care, the present study was conducted to study the effect of a traditional training method on nurses' perception of and clinical competency in providing end-of-life care to patients with cancer in a hospital in Southeastern Iran.
Methods: This was a pilot clinical trial in which the nurses in an oncology ward were allocated to two groups, experimental (n = 24) and control (n = 33), using a table of random numbers. The experiment group received three sessions of workshop training. The nurses' perception and clinical competency were measured before and 3 months postintervention.
Results: The results showed the perception scores in the experimental and control groups to be 171.75 ± 19.54 and 170.03 ± 17.03 before education and 176.16 ± 19.54 and 176.12 ± 16.12 postintervention, respectively. The scores of clinical competency were 98.71 ± 10.24 and 99.58 ± 12.17 before education and 101.5 ± 14.67 and 104.97 ± 12 postintervention in the experimental and control groups, respectively. According to the findings, neither of the groups showed a significant difference between pre- and post-intervention in terms of perception of or clinical competency in end-of-life care.
Conclusions: A traditional training method such as workshop training cannot cause long-term improvement in nurses' end-of-life care perception or clinical competency. It seems that nurses would benefit from acquiring cognitive and behavioral skills and knowledge through a more continuous form of instruction delivered through modern blended educational methods.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
BACKGROUND: Studies have shown gaps in prognostic understanding among patients with cancer. However, few studies have explored patients' perceptions of their treatment goals versus how they perceive their oncologist's goals, and the association of these views with their psychological distress.
METHODS: We conducted a cross-sectional study of 559 patients with incurable lung, gastrointestinal, breast, and brain cancers. The Prognosis and Treatment Perception Questionnaire was used to assess patients' reports of their treatment goal and their oncologist's treatment goal, and the Hospital Anxiety and Depression Scale was used to assess patients' psychological symptoms.
RESULTS: We found that 61.7% of patients reported that both their treatment goal and their oncologist's treatment goal were noncurative, whereas 19.3% reported that both their goal and their oncologist's goal were to cure their cancer, 13.9% reported that their goal was to cure their cancer whereas their oncologist's goal was noncurative, and 5% reported that their goal was noncurative whereas their oncologist's goal was curative. Patients who reported both their goal and their oncologist's goal as noncurative had higher levels of depression (B=0.99; P=.021) and anxiety symptoms (B=1.01; P=.015) compared with those who reported that both their goal and their oncologist's goal was curative. Patients with discordant perceptions of their goal and their oncologist's goal reported higher anxiety symptoms (B=1.47; P=.004) compared with those who reported that both their goal and their oncologist's goal were curative.
CONCLUSIONS: One-fifth of patients with incurable cancer reported that both their treatment goal and their oncologist's goal were to cure their cancer. Patients who acknowledged the noncurative intent of their treatment and those who perceived that their treatment goal was discordant from that of their oncologist reported greater psychological distress.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
BACKGROUND: Advance care planning is not well implemented in Belgian hospital practice. In order to obtain successful implementation, implementation theory states that the adopters should be involved in the implementation process. This information can serve as a basis for creating better implementation strategies.
AIM: For this study, we asked hospitalized palliative patients and their families what they experienced as good advance care planning.
METHODS: Twenty-nine interviews were taken from patients and families, following the Tape Assisted Recall procedure of Elliot. These interviews were analyzed using content analysis based on grounded theory. To improve reliability, 3 independent external auditors audited the analysis.
RESULTS: Results show that hospitalized palliative patients and families want to have advance care planning communication about treatment and care throughout their disease and about different aspects: social, psychological, physical, practical, and medical. They prefer to have these conversations with their supervising physician. They report 4 important goals of advance care planning communication: establishing a trustful relationship with the physician, in which they feel the involvement of the physician; giving and receiving relevant information for the decision process, making a personal decision about which treatment and care are preferred; and finding consensus between the preferred decision of the physician, the patient and the family concerning the treatment and care policy.
CONCLUSION: This study can contribute to advance care planning implementation in hospital practice because it gives in insight into which elements in advance care planning patients and families experience as necessary and when advance care planning is necessary to them.
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement.
AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA.
DESIGN: Mixed-methods quasi-experimental study.
PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU.
RESULTS: Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death.
CONCLUSIONS: Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.
BACKGROUND: Early palliative care consultation ("PCC") to discuss goals-of-care benefits seriously ill patients. Risk factor profiles associated with the timing of conversations in hospitals, where late conversations most likely occur, are needed.
OBJECTIVE: To identify risk factor patient profiles associated with PCC timing before death.
METHODS: Secondary analysis of an observational study was conducted at an urban, academic medical center. Patients aged 18 years and older admitted to the medical center, who had PCC, and died July 1, 2014 to October 31, 2016, were included. Patients admitted for childbirth or rehabilitationand patients whose date of death was unknown were excluded. Classification and Regression Tree modeling was employed using demographic and clinical variables.
RESULTS: Of 1141 patients, 54% had PCC "close to death" (0-14 days before death); 26% had PCC 15 to 60 days before death; 21% had PCC >60 days before death (median 13 days before death). Variables associated with receiving PCC close to death included being Hispanic or "Other" race/ethnicity intensive care patients with extreme illness severity (85%), with age <46 or >75 increasing this probability (98%). Intensive care patients with extreme illness severity were also likely to receive PCC close to death (64%) as were 50% of intensive care patients with less than extreme illness severity.
CONCLUSIONS: A majority of patients received PCC close to death. A complex set of variable interactions were associated with PCC timing. A systematic process for engaging patients with PCC earlier in the care continuum, and in intensive care regardless of illness severity, is needed.
Purpose: Patients' views on quality are important to improve person-centered palliative care. There is a lack of short, validated instruments incorporating patients' perspectives of the multidisciplinary palliative care services. The aim of this study was to develop a short form of the instrument Quality from the Patient's Perspective for Palliative Care (QPP-PC) and to describe and compare patients' perceptions of the subjective importance (SI) of care aspects and their perceptions of care received (PR).
Methods: A cross-sectional study was conducted in Norway including 128 patients (67% response rate) in four palliative care contexts. The QPP-PC, based on a person-centered theoretical framework, incorporating the multidisciplinary palliative care, comprises 4 dimensions; medical-technical competence, physical-technical conditions, identity-oriented approach and sociocultural atmosphere, 12 factors (49 items) and 3 single items. The instrument measures SI and PR. Development of the short form of the QPP-PC was inspired by previously published methodological guidelines. Descriptive statistics, paired t-tests, confirmatory factor analysis and Cronbach's a were used.
Results: The short form of QPP-PC consists of 4 dimensions, 20 items and 4 single items. Psychometric evaluation showed a root-mean-square error of approximation (RMSEA) value of 0.109 (SI). Cronbach's a values ranged between 0.64 and 0.85 for most dimensions on SI scales. Scores on SI and PR scales were mostly high. Significantly higher scores for SI than PR were present for the identity-oriented approach dimension, especially on items about information.
Conclusion: RMSEA value was slightly above the recommended level. Cronbach's a was acceptable for most dimensions. The short form of QPP-PC shows promising results and may be used with caution as an indicator of person-centered patient-reported experience measures evaluating the multidisciplinary palliative care for patients in a late palliative phase. However, the short version of QPP-PC needs to be further validated using new samples of patients.