CONTEXT: The validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of ACP behaviors but is long.
OBJECTIVES: Determine whether shorter Survey versions (55-, 34-, 15-, 9-, 4-items) can detect similar change in response to two well-validated ACP interventions and provide practical effect size information.
METHODS: We assessed ACP engagement for 986 English- and Spanish-speaking adults in a randomized trial of PREPARE versus an advance directive (AD-only) study arms. The Survey was administered at baseline, 1 week, and 3, 6, 12 months. We calculated mean change scores from baseline to follow-up time points by study arm, intraclass correlation coefficients of change scores between the 82-item Survey with shorter versions, and within- and between-group effect sizes of the mean change scores.
RESULTS: Shorter Survey versions were able to detect within- and between-group changes at all time points. Within-group intraclass correlations of the 82-item to shorter versions were high (0.78 to 0.97) and the amount of between-group differences were comparable using all Survey versions. Twelve-month within-group effect sizes ranged narrowly from 0.76 to 1.05 for different Survey versions in the PREPARE arm and from 0.44 to 0.64 for the AD-only. Between-group effect sizes ranged narrowly from 0.24 to 0.30 for different Survey versions. Results were similar when stratified by English- and Spanish-speakers.
CONCLUSION: Shorter versions of the ACP Engagement Survey were able to detect within- and between-group changes comparable to the 82-item version and can be useful for efficiently and effectively measuring ACP engagement in research and clinical settings.
The goal of this study was to explore quality of life in patients with advanced non-small-cell lung cancer (NSCLC) in an attempt to single out features that could help predict the possibility of non-completion of chemotherapy. The survey tool was the Quality of Life Questionnaire Core-30 (QLQ-C30) with the module Lung Cancer 13 (LC-13) developed by the European Organization for Research and Treatment of Cancer. The assessment of quality of life (QoL) was performed in 58 patients with advanced NSCLC before palliative chemotherapy and it was repeated in 43 patients who completed at least three cycles of chemotherapy. We found that the patients who failed to complete the chemotherapy course distinctly showed, in contradistinction to those who completed it, poor physical functioning in (67.6 ± 16.3 vs. 78.3 ± 21.3 points, respectively, p < 0.05) and the lack of appetite (27.1 ± 38.0 vs. 48.9 ± 37.5 points, respectively p < 0.05). At the end of palliative chemotherapy alopecia, sore throat, and constipation significantly worsened QoL, but global health status remained unchanged. In conclusion, poor physical functioning and loss of appetite seem to harbinger a risk of non-completion of chemotherapy in advanced NSCLC.
OBJECTIVE: This is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).
METHODS: In this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.
RESULTS: The majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.
INTERPRETATION: Some patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.
BACKGROUND: To determine the validity, reliability and acceptability of the Mandarin Chinese version of the Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv) for measuring problems and palliative care needs among patients with advanced cancer.
METHODS: This was a validation study using a forward- and backward- translation procedure, a panel of experts and a cross-sectional study design. The Mandarin Chinese version of the PNPC-sv was translated by four independent translators. The translated Chinese version was further reviewed by an expert panel to identify its content validity. A pilot test was conducted in 10 advanced cancer patients to preliminarily assess the face validity, readability and clarity of the pre-final version of the PNPC-sv. 178 patients with advanced cancer, regardless of their gender and types of cancer diagnosis, were further recruited through a convenience sampling from three tertiary hospitals in China to assess the psychometric properties of the PNPC-sv Mandarin Chinese version. Content validity was measured using the content validity index (CVI). Construct validity was estimated via confirmatory factor analysis and the contrasted groups approach. Concurrent validity was identified by analysing the correlations between the EORTC Quality-of-Life Questionnaire-Core 30 (EORTC QLQ-C30) and the PNPC-sv. Reliability of the PNPC-sv was examined with the internal consistency reliability and item-to-total correlations. Several closed-ended and open-ended questions were designed to explore its acceptability.
RESULTS: 174 patients completed the questionnaires. High content and face validity were determined after the two rounds of assessment with the expert panel and the patients. An excellent CVI of 1.0 was achieved and patients rated the PNPC-sv as a useful instrument for assessing their problems and needs (mean score = 7.99, 0–10 scale) and reported the items were not particularly sensitive and easy to understand. The majority of the fit indexes meet the critical criteria, with the Chi-square divided by degrees of freedom (x2/df) being 1.58 and 2.05, and the root mean squared error of approximation (RMSEA) being 0.06 and 0.07 for the problem part and need-for-care part, respectively. In relation to the contrasted groups analysis, it clearly discriminated the differences on the sub-scores of Activities of Daily Life (ADL), spiritual and psychological problems and needs between male and female patients; ADL, physical, social and financial problems and needs between age groups; and autonomic problems and needs between patients with different cancer stages. Statistically significant correlations (p < 0.05) were detected between the PNPC-sv and the EORTC QLQ-C30 in the majority of the sub-scores (positive correlations) and total scores (negative correlations). The Cronbach’s alpha of the total scale was 0.88 and 0.91 for the problem part and need-for-care part, respectively. The Cronbach’s alpha of the subscales were generally above 0.70. Item-to-total correlations were generally acceptable, with the majority of the values being above 0.40. The PNPC-sv questionnaire was reported to be convenient and easy to understand, and the average time for completing was 11 min.
CONCLUSIONS: The Mandarin Chinese version of the PNPC-sv is a valid, reliable and user-friendly instrument for measuring problems and palliative care needs among patients with advanced cancer. Further research is needed to further examine its psychometric properties particular internal structure in a larger patient sample.
BACKGROUND: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process.
AIMS: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity.
METHODS: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests.
FINDINGS: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated.
CONCLUSION: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death.
BACKGROUND: The goals of palliative care are to relieve suffering and promote quality of life. Palliative care for older persons has been less prioritised than palliative care for younger people with cancer, which may lead to unnecessary suffering and decreased quality of life at the final stage of life.
AIM: To evaluate whether a palliative care intervention had any influence on the perceived quality of life of older persons (=65 years).
METHODS: This study was conducted as a complex intervention performed with an experimental crossover design. The intervention was implemented in 20 nursing homes, with a six-month intervention period in each nursing home. Twenty-three older persons (=65 years) in the intervention group and 29 in the control group were interviewed using the WHOQOL-BREF and WHOQOL-OLD questionnaires at both baseline and follow-up. The collected data were analysed using the Wilcoxon signed-rank test to compare paired data between baseline and follow-up.
RESULTS: In the intervention group, no statistically significant increases in quality of life were found. This result contrasted with the control group, which revealed statistically significant declines in quality of life at both the dimension and item levels. Accordingly, this study showed a trend of decreased health after nine months in both the intervention and control groups.
CONCLUSION: It is reasonable to believe that quality of life decreases with age as part of the natural course of the ageing process. However, it seems that the palliative care approach of the intervention prevented unnecessary quality of life decline by supporting sensory abilities, autonomy and social participation among older persons in nursing homes. From the ageing perspective, it may not be realistic to strive for an increased quality of life in older people living in nursing homes; maybe the goal should be to delay or prevent reduced quality of life. Based on this perspective, the intervention prevented decline in quality of life in nursing home residents.
IMPLICATIONS FOR PRACTICE: The high number of deaths shows the importance to identify palliative care needs in older persons at an early stage to prevent or delay deterioration of quality of life.
Période de vulnérabilité, la fin de vie est marquée par une appétence relationnelle des malades, qui concerne l’entourage, les soignants mais aussi éventuellement un animal, celui du malade ou inscrit dans un projet de service de médiation animale. Un tel projet a été mis en place au sein de l’unité de soins palliatifs, dont l’un des volets est relatif à la présence d’un chat résident permanent de l’unité. L’impact de sa présence a été étudié par un questionnaire de satisfaction auprès des patients et des familles. Trente-six questionnaires sur une période de trois mois ont été étudiés. Les résultats montrent que la chatte a fréquenté presque toutes les chambres et circulé dans les parties communes. Patients et entourage ont des eu interactions avec elle, sous forme de caresses. Elle a apporté distraction, détente et réconfort pour plus de la moitié des personnes interrogées, et dans une moindre mesure diminution de l’anxiété. La satisfaction globale a été majeure : 84,4 % des personnes ont estimé la présence de la chatte très satisfaisante et 15,6 % satisfaisante. Les limites étaient notamment la faiblesse de l’échantillon et la brièveté de la période d’étude. D’autres items auraient pu être étudiés : impact sur l’humeur, la fatigue, l’appétit, la perception de l’état de santé. L’impact sur les soignants serait une autre piste de réflexion.
PURPOSE: The purpose of this study was to explore the perceptions of critical care nurses regarding the withdrawal or withholding of enteral nutrition (EN) and parenteral nutrition (PN) at the end-of-life, which is not allowed according to the current law in South Korea.
METHODS: This was a cross-sectional study utilizing a self-report survey. The participants in the study were 141 nurses working in the intensive care units of a tertiary university hospital. The critical care nurses' general attitudes about EN and PN at the end-of-life were measured using the questionnaires developed by Lubart, Leibovitz, and Habot. The nurses responded to additional questions on whether withdrawal or withholding of EN or PN at the end-of-life should be legally allowed.
RESULTS: The mean scores of the general attitude items on EN ranged between 3.03 and 3.35 on a 5-point Likert scale where a value of 1 represents "strongly disagree" and a value of 5 represents "strongly agree," while those for PN ranged between 2.89 and 3.65. Respecting attitudes toward EN and PN, critical care nurses had more negative attitudes about stopping PN than EN. Regarding attitudes about whether patients should be legally able to refuse EN, 34.3% agreed, while 25.7% disagreed. For PN, 40.0% agreed, while 24.3% disagreed.
CONCLUSION: Discussions about making the withdrawal and withholding of artificial nutrition legal should be initiated. Moreover, education regarding evidence about the outcomes of EN and PN during end-of-life care and up-to-date clinical guidelines about it should be provided.
PURPOSE: Patients in palliative care are willing to answer short questionnaires, like the EORTC QLQ-C15-PAL; however, patients may suffer from other symptoms and problems (S/Ps) not covered by such questionnaires. Therefore, to identify which other S/Ps patients experience, in addition to those already included in the EORTC QLQ-C15-PAL, we developed a brief instrument to supplement this questionnaire named WISP (Write In three Symptoms/Problems), permitting patients to report 1-3 additional S/Ps and their severity. We aim to investigate the nature, prevalence, and severity of S/Ps reported on WISP.
METHODS: A register-based study with data obtained from the Danish Palliative Care Database. This study included adults with advanced cancer admitted to specialized palliative care in Denmark, who reported S/Ps on WISP. S/Ps were categorized qualitatively, and their prevalence and severity were calculated.
RESULTS: Of the 5447 patients who completed the EORTC QLQ-C15-PAL, 1788 (32.8%) reported at least one symptom/problem using WISP. In total, 2796 S/Ps were reported; 24.8% were already covered by EORTC QLQ-C15-PAL; 63.6% were new, 10.1% were diagnoses and 1.6% could not be coded. S/Ps already covered and new were grouped into 61 categories. The most prevalent S/Ps reported were (in decreasing order) pain, edema, dizziness, impaired physical or emotional function, cough, and sweats. Overall, 85% of the S/Ps were rated as moderate to severe.
CONCLUSIONS: The WISP instrument strongly improves the recognition of S/Ps by combining standardization with individualization. We recommend its use for comprehensive symptom assessment alongside the EORTC QLQ-C15-PAL, and potentially also alongside the EORTC QLQ-C30.
Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Objective: Patients want to discuss spirituality more with their doctors but feel disempowered. Question prompt lists (QPLs) assist conversations. This study assessed the impact of a QPL on spirituality discussions in Palliative Care (PC).
Methods: This was a sub-study of a trial in which PC patients were randomised to either receive a QPL prior to a consultation or not, to see whether its provision influenced advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a PC physician. Consultations were recorded and transcribed. Transcriptions were analysed to examine the frequency and content of spirituality discussions. We conducted logistic regression to investigate the impact of the QPL and other predictors.
Results: 174 patients participated. Spirituality was discussed in half the consultations. Patients receiving a QPL discussed spirituality 1.38 times more than controls. This finding did not reach statistical significance. First PC consultation and being asked about their concerns by the doctor were significant predictors of a spiritual discussion.
Conclusion: Patients are more likely to discuss spirituality in their first PC consultation, and when their doctor asks them about their concerns.
Practice implications: Doctors caring for patients at the end of life should routinely raise spiritual issues.
BACKGROUND: Nurses play a major role in providing end-of-life care, and euthanasia is considered to be one of the most important ethical challenges that care providers can face.
AIM: To assess the nurses' attitude towards euthanasia in Iran.
METHODS: The cross-sectional study included nurses who worked in intensive and critical care, as well as dialysis units of a teaching hospital affiliated to Zahedan University of Medical Sciences, who were selected by the census sampling technique. Data were collected using a two-part questionnaire encompassing the demographic characteristics of nurses and the 20-item Euthanasia Attitude Scale.
RESULTS: The overall score of nurses' attitudes towards euthanasia, ranging from one to five, was 2.71±0.45, indicating a negative attitude and opposition towards euthanasia. Alongside this, the results demonstrated that there was no significant relationship between demographic characteristics and nurses' attitudes toward euthanasia.
CONCLUSION: In general, nurses in Iran oppose euthanasia. This can be attributed to the context of religious beliefs and culture in Iran as an Islamic country.
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.
Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).
Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.
Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
This research aimed to explore the role of workplace responses in psychologists’ adaptation to client suicides. Participants were 178 psychologists who completed an online self-report questionnaire which included both open and closed questions yielding qualitative and quantitative data. Fifty-six (31.5%) participants reported one or more client suicides. Mixed results were found in terms of perceived support from the workplace following a client suicide. Psychologists reported a need for more open communication in the workplace, peer supports, space to grieve, as well as opportunities to engage in a learning process. The findings have important implications for research and for understanding the role of the workplace postvention. It also raises the need for external support to be accessible for psychologists working in private practice.
Background: In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design.
Methods: Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically.
Results: Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions.
Conclusions: Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.
Background: Complicated grief encompasses various presentations where aspects of grief do not become integrated into the bereaved person's life. Professionals' attitudes to complicated grief may impact how they engage with bereaved patients/clients. The aim of this study was to empirically examine the attitudes of mental health professionals, specifically psychologists, psychiatrists and counselor/psychotherapists, regarding complicated grief and to investigate any between profession-differences.
Method: Psychiatrists, counselor/psychotherapists and psychologists were recruited using publicly available databases managed by professional bodies. A total of 185 professionals (71.8% female), returned a questionnaire containing usable data (23.8% response rate).
Results: Over two-thirds of the professionals (68.5%) supported the inclusion of complicated grief in diagnostic manuals while only a quarter (25.1%) thought that recognition of complicated grief might lead to the pathologization of 'normal' grief. The majority of respondents (83.0%) thought that diagnosing complicated grief would increase the likelihood of clients accessing support and there was no significant difference between the groups.
Limitations: Although the response rate compares favorably with other studies it is nonetheless somewhat lower than optimum, and it is possible that those who responded were more interested in bereavement and consequently, that the attitudes held by participants are different from those who did not participate.
Conclusion: The attitude to a diagnosis of complicated grief was more positive than the specialist literature suggests, with the benefits of having a diagnosis of complicated grief outweighing the risks of pathologization.
Introduction: To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.
METHODS: We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.
RESULTS: Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.
CONCLUSIONS: RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.
In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.