Patients’ perceptions of palliative care: adaptation of the Quality from the Patient’s Perspective instrument for use in palliative care,and description of patients’ perceptions of care received

Background

Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and Care Excellence (NICE) Dementia Quality Standards (QS). Since publication of the QS new care interventions have been developed.

Aim

To explore critically the current international research evidence on effect available to inform NICE Dementia QS relevant to end of life (EOL) care.

Design

We used systematic review methods to seek the research evidence for three statements within the Dementia QS. These are those that recommend: (1) a case management approach, (2) discussing and consideration of making a statement about future care (SFC) and (3) a palliative care assessment (PCA). We included evaluative studies of relevant interventions that used a comparative design, such as trials and cohort studies, and measured EOL care outcomes for persons dying with moderate to severe dementia. Our primary outcome of interest was whether the intervention led to a measurable impact on wellbeing for the person with dementia and their family. We assessed included studies for quality using a scale by Higginson and colleagues (2002) for assessment of quality of studies in palliative care, and two authors undertook key review processes. Data sources included Cinahl, Embase, and PsychINFO from 2001 to August 2014. Our search strategy included free text and medical subject headings relevant to population and recommended care.

Results

We found seven studies evaluating a care intervention; four assessed SFC, three PCA. None assessed case management. Studies were of weak design; all used retrospective data and relied on others for precise record keeping and for accurate recall of events. There was limited overlap in outcome measurements. Overall reported benefits were mixed.

Conclusions

Quality statements relevant to EOL care are useful to advance practice however they have a limited evidence base. High quality empirical work is needed to establish that the recommendations in these statements are best practice.

     

Touch in primary care consultations: qualitative investigation of doctors’ and patients’ perceptions

Background

Good communication skills are integral to successful doctor–patient relationships. Communication may be verbal or non-verbal, and touch is a significant component, which has received little attention in the primary care literature. Touch may be procedural (part of a clinical task) or expressive (contact unrelated to a procedure/examination).

Aim

To explore GPs’ and patients’ experiences of using touch in consultations.

Design and setting

Qualitative study in urban and semi-rural areas of north-west England.

Method

Participating GPs recruited registered patients with whom they felt they had an ongoing relationship. Data were collected by semi-structured interviews and subjected to constant comparative qualitative analysis.

Results

All participants described the importance of verbal and non-verbal communication in developing relationships. Expressive touch was suggested to improve communication quality by most GPs and all patients. GPs reported a lower threshold for using touch with older patients or those who were bereaved, and with patients of the same sex as themselves. All patient responders felt touch on the hand or forearm was appropriate. GPs described limits to using touch, with some responders rarely using anything other than procedural touch. In contrast, most patient responders believed expressive touch was acceptable, especially in situations of distress. All GP responders feared misinterpretation in their use of touch, but patients were keen that these concerns should not prevent doctors using expressive touch in consultations.

Conclusion

Expressive touch improves interactions between GPs and patients. Increased educational emphasis on the conscious use of expressive touch would enhance clinical communication and, hence, perhaps patient wellbeing and care.     

Phenotype and genotype of 87 patients with Mowat–Wilson syndrome and recommendations for care

PurposeMowat–Wilson syndrome (MWS) is a rare intellectual disability/multiple congenital anomalies syndrome caused by heterozygous mutation of the ZEB2 gene. It is generally underestimated because its rarity and phenotypic variability sometimes make it difficult to recognize. Here, we aimed to better delineate the phenotype, natural history, and genotype–phenotype correlations of MWS.MethodsIn a collaborative study, we analyzed clinical data for 87 patients with molecularly confirmed diagnosis. We described the prevalence of all clinical aspects, including attainment of neurodevelopmental milestones, and compared the data with the various types of underlying ZEB2 pathogenic variations.ResultsAll anthropometric, somatic, and behavioral features reported here outline a variable but highly consistent phenotype. By presenting the most comprehensive evaluation of MWS to date, we define its clinical evolution occurring with age and derive suggestions for patient management. Furthermore, we observe that its severity correlates with the kind of ZEB2 variation involved, ranging from ZEB2 locus deletions, associated with severe phenotypes, to rare nonmissense intragenic mutations predicted to preserve some ZEB2 protein functionality, accompanying milder clinical presentations.ConclusionKnowledge of the phenotypic spectrum of MWS and its correlation with the genotype will improve its detection rate and the prediction of its features, thus improving patient care.     

Advance care planning for nursing home residents with dementia: Influence of ‘we DECide’ on policy and practice

Objectives(1) To pilot ‘we DECide’ in terms of influence on advance care planning policy and practice in nursing home dementia care units. (2) To investigate barriers and facilitators for implementing ‘we DECide’.MethodsThis was a pre-test—post-test study in 18 nursing homes. Measurements included: compliance with best practice of advance care planning policy (ACP-audit); advance care planning practice (ACP criteria: degree to which advance care planning was discussed, and OPTION scale: degree of involvement of residents and families in conversations).ResultsAdvance care planning policy was significantly more compliant with best practice after ‘we DECide’; policy in the control group was not. Advance care planning was not discussed more frequently, nor were residents and families involved to a higher degree in conversations after ‘we DECide’. Barriers to realizing advance care planning included staff’s limited responsibilities; facilitators included support by management staff, and involvement of the whole organization.Conclusion‘We DECide’ had a positive influence on advance care planning policy. Daily practice, however, did not change. Future studies should pay more attention to long-term implementation strategies.Practice implicationsLong-term implementation of advance care planning requires involvement of the whole organization and a continuing support system for health care professionals.     

Decision making and referral from primary care for possible lung and colorectal cancer: a qualitative study of patients’ experiences

Background

The challenge for GPs when assessing whether to refer a patient for cancer investigation is that many cancer symptoms are also caused by benign self-limiting illness. UK National Institute for Health and Care Excellence (NICE) referral guidelines emphasise that the patient should be involved in the decision-making process and be informed of the reasons for referral. Research to date, however, has not examined the extent to which these guidelines are borne out in practice.

Aim

To assess the degree to which patients are involved in the decision to be referred for investigation for symptoms associated with cancer and their understanding of the referral.

Design and setting

Qualitative interview study of patients referred to secondary care for symptoms suspicious of lung and colorectal cancer. Patients were recruited from two regions of England using maximum variation sampling.

Method

Transcribed interviews were analysed thematically.

Results

The analysis was based on 34 patient interviews. Patients in both symptom pathways reported little involvement in the decision to be referred for investigation. This tended to be accompanied by a patient expectation for referral, however, to explain ongoing and un-resolving symptoms. It was also found that reasons for referral tended to be couched in non-specific terms rather than cancer investigation, even when the patient was on a cancer-specific pathway.

Conclusion

GPs should consider a more overt discussion with patients when referring them for further investigation of symptoms suspicious of cancer. This would align clinical practice with NICE guidelines and encourage more open discussion between GPs and primary care patients around cancer.     

The relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality

Background

Little is known about the combination of person- and organization- related conditions and the relationships with patients’ perspectives of care quality. Such a combination could contribute knowledge reflecting the complexity of clinical practice, and enhance individualized care. The aim was to investigate the relationships between the combination of person- and organization-related conditions and patients’ perceptions of palliative care quality.

Methods

A cross-sectional study, including 191 patients in the late palliative phase (73% response rate) admitted to hospice inpatient care (n =?72), hospice day care (n =?51), palliative units in nursing homes (n =?30) and home care (n =?38), was conducted between November 2013 and December 2014, using the instrument Quality from the Patients’ Perspective specific to palliative care (QPP-PC). Data were analysed, using analysis of covariance, to explore the amount of the variance in the dependent variables (QPP-PC) that could be explained by combination of the independent variables – Person- and organization-related conditions, ? while controlling for differences in covariates.

Results

Patients scored the care received and the subjective importance as moderate to high. The combination of person- and organization - related conditions revealed that patients with a high sense of coherence, lower age (person – related conditions) and being in a ward with access to and availability of physicians (organization-related condition) might be associated with significantly higher scores for the quality of care received. Gender (women), daily contact with family and friends, and low health-related quality of life (person-related conditions) might be associated with higher scores for subjective importance of the aspects of care quality.

Conclusion

Healthcare personnel, leaders and policy makers need to pay attention to person- and organization-related conditions in order to provide person-centered palliative care of high quality. Further studies from palliative care contexts are needed to confirm the findings and to investigate additional organizational factors that might influence patients’ perceptions of care quality.

     

Computerization and its contribution to care quality improvement: The nurses’ perspective

BackgroundDespite the widely held belief that the computerization of hospital medical systems contributes to improved patient care management, especially in the context of ordering medications and record keeping, extensive study of the attitudes of medical staff to computerization has found them to be negative. The views of nursing staff have been barely studied and so are unclear. The study reported here investigated the association between nurses’ current computer use and skills, the extent of their involvement in quality control and improvement activities on the ward and their perception of the contribution of computerization to improving nursing care. The study was made in the context of a Joint Commission International Accreditation (JCIA) in a large tertiary medical center in Israel. The perception of the role of leadership commitment in the success of a quality initiative was also tested for.MethodsTwo convenience samples were drawn from 33 clinical wards and units of the medical center. They were questioned at two time points, one before the JCIA and a second after JCIA completion. Of all nurses (N = 489), 89 were paired to allow analysis of the study data in a before-and-after design. Thus, this study built three data sets: a pre-JCIA set, a post-JCIA set and a paired sample who completed the questionnaire both before and after JCIA. Data were collected by structured self-administered anonymous questionnaire.ResultsAfter the JCIA the participants ranked the role of leadership in quality improvement, the extent of their own quality control activity, and the contribution of computers to quality improvement higher than before the JCIA. Significant Pearson correlations were found showing that the higher the rating given to quality improvement leadership the more nurses reported quality improvement activities undertaken by them and the higher nurses rated the impact of computerization on the quality of care. In a regression analysis quality improvement leadership and computer use/skills accounted for 30% of the variance in the perceived contribution of computerization to quality improvement.Conclusions(a) The present study is the first to show a relationship between organizational leadership and computer use by nurses for the purpose of improving clinical care. (b) The nurses’ appreciation of the contribution computerization can make to data management and to clinical care quality improvement were both increased by the JCI accreditation process.     

Learning to care: medical students’ reported value and evaluation of palliative care teaching involving meeting patients and reflective writing

Background

Over recent years there has been an increase in teaching of both palliative care and reflective practice in UK medical schools. The palliative care teaching at the University of Cambridge School of Clinical Medicine is multi-faceted and involves students writing reflective essays after individually meeting patients approaching the end of life during their final year general practice and hospital medicine placements. This paper draws on two studies examining this teaching element to analyse what the students found valuable about it and to comment on the practice of meeting patients and subsequent reflective writing.

Methods

Two studies have explored students’ perceptions of these course components. The first was a thematic analysis of 234 reflective essays from 123 students written in 2007-2008, including examining what students wrote about the exercise itself. The second project involved a semi-structured questionnaire that students completed anonymously; this paper reports on the free text elements of that study [sample size =107]. Since similar themes were found in both studies, the coding structures from each project were compared and combined, enabling triangulation of the findings around what the students found valuable from the palliative care teaching involving meeting patients and reflective writing.

Results

Overall, students reported that these components of the palliative care teaching are valuable. Four main themes were identified as aspects that students valued: (1) dedicated time with patients, (2) learning about wider elements of treatment and holistic care, (3) practicing communication skills, and (4) learning about themselves through reflective writing. Some students expressed a dislike for having to formally write a reflective essay.

Conclusion

It is possible to arrange for all of the medical students to individually meet at least two patients receiving palliative or end of life care. Students found these encounters valuable and many wrote about the benefit of formally writing about these experiences. Students reported finding this model useful in widening their skill-set and understanding of palliative care.

     

Responding to nurses’ communication challenges: Evaluating a blended learning program for communication knowledge and skills for nurses

ObjectivesTo evaluate the effectiveness of the Blended Communication Skills Training Program for Nurses (CSTN). The program aims to improve nurses’ knowledge about communication skills and structure for interactions with individuals who a have life limiting illness.MethodsThis was a quasi-experimental study using a pre- and post-test quiz and self-efficacy questionnaire undertaken in Victoria, Australia. Nurses employed across three wards participated. The Blended CSTN comprised two major components: Asynchronous Web-Based Education Program and Experiential Workshop. The program focused on specific communication challenges: Gathering Information, Dealing with Difficult Questions, and Articulating Empathy. The primary outcome was improvement in knowledge of communication skills and structure. Self-efficacy and perceived importance of communication skills were assessed as secondary outcomes.ResultsEighteen nurses completed both Web-Based and Workshop components. Statistically significant increases in knowledge regarding communication skills and structure were found, with a large effect size for Gathering Information (r = 0.80) and moderate effect for Articulating Empathy (r = 0.62), and Responding to Difficult Questions (r = 0.532). Self-efficacy significantly increased for all measured communication skills.ConclusionsKnowledge improvements and perceived self-efficacy in communication were observed after nurses participated in a blended education programPractice implicationsA blended CSTN may improve nurse-patient communication in the clinical setting, worthy of further study.     

Palliative care for older people – exploring the views of doctors and nurses from different fields in Germany

Background  

Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation.     

The value of physicians’ affect-oriented communication for patients’ recall of information

ObjectiveThe aim of this paper is to discuss experimental research investigating the effect of physicians’ affect-oriented communication on patients’ recall of information provided during medical consultations, with a special focus on the mediating role of emotional stress in that relation.Methods & resultsA search of experimental research literature was conducted, resulting in six research articles experimentally investigating the relations of interest, all using a video-vignettes design. A summary of results is provided and discussed.ConclusionsThe research reviewed in this paper provides evidence for the causal and mostly positive influence of several forms of affect-oriented communication on patients’ recall of medical information. Results indicate that reducing emotional stress may not be the underlying mechanism through which physicians’ communication influences patients’ recall.Practice implicationsThe obtained insights will help educators to teach evidence-based medical communication skills and to scientifically validate the importance of these skills for patients’ recall of information. Advancing physicians’ communication skills with evidence-based training will contribute to the professionalism that is the hallmark of good quality of care.     

Adolescent cancer patients’ perceived quality of cancer care: The roles of patient engagement and supporting independence

Objectives

A lack of focus on variation in engagement among cancer populations of differing developmental stages led us to examine the associations between patient engagement, the patient-provider relationship, cognitive development, readiness to transition to adulthood (transitional readiness) and perceived quality of care.

Doctors’ experience of becoming patients and its influence on their medical practice: A literature review

PurposeDoctors’ illness experiences can deeply influence not only their perceptions of illness and roles but also their medical practice. Researchers and doctors have sought to understand what happens when doctors become patients. However, currently, literature reviews focused exclusively on their illness experiences are lacking.This review examines academic literature and combines it with illness narratives (i.e., pathographies) written by doctors to elucidate the unknown about doctors’ experiences and its subsequent influence on medical practice.MethodsAn electronic search of the databases Academic Search Complete, Google Scholar, PubMed, ProQuest, and Ichushi-Web was conducted using relevant keywords. The literature reviewed included studies that described doctors’ illness experiences or doctors’ perspectives on their experiences of being patients.ResultsPrevious studies showed that doctors’ disease prognoses are generally better than or similar to those of patients belonging to the general population. However, doctors’ documented illness experiences are multi-dimensional and have several common themes. These include the concept of the ‘medical self’ (behaving as a doctor despite being a patient) and ‘role reversal’ (the doctor adjusting to the patient role). The other elements of their experiences include barriers to health care, self-treatment and self-doctoring, presenteeism, and ‘wounded healers’ (those who can heal others using the wisdom from their illness experiences). Most previous literature has omitted the sociocultural and historical dispositions of doctors and their biomedical perspectives of their own afflictions, even though these strongly impact their illness experiences.ConclusionFurther research that re-contextualises the meaning of illness for doctors is necessary.     

Patients with combined physical and psychiatric problems: A survey of nurses’ attitudes toward “unwanted” patients

Psychiatric, medical, and surgical nurses (N = 49) estimated the number of patients with combined physical and psychiatric problems on their units to be fairly high, respectively, 20%, 17%, and 12%. Assessment of the responses to a detailed questionnaire about concerns and problems in caring for these patients pointed to various possible improvements. Key recommendations are: increased liaison services with nurses; guidelines for all units for the care of these patients; regular inservice training; availability of necessary material resources; improved communication at the time of patient transfer; and outpatient follow-up after discharge.