Making known one's end-of-life (EOL) care wishes via the processes of advance care planning (ACP) and advance directive (AD) completion is associated with many positive outcomes for patients including lower healthcare costs, greater patient-provider relationship satisfaction, increased quality of life, and more. Despite these benefits, fewer than 30% of patients in the United States engage in ACP or complete ADs. These low numbers are most likely due to several causes, including low self-efficacy and low motivation to engage in the process. Several researchers have examined the persuasive power of using worry to motivate patients to engage in preventive health behaviors. The present study expands upon this body of literature by examining patient intentions to seek information related to ACP and AD after being exposed to stimuli intended to arouse differing levels of worry regarding bad EOL outcomes. Participants (N = 804) were randomly assigned to either the high worry, low worry, or control group and asked to complete a questionnaire examining beliefs and information seeking intentions regarding ACP and AD completion. Additionally, to control for participants' level of trait worry, each participant completed the Penn State Worry Questionnaire, which was treated as a covariate in the final analysis. A repeated measures MANCOVA found a statistically significant increase for the worrying conditions on the participants' intention to seek information about ACP and ADs from time 1 to time 2 for those in the worry experimental conditions. However, those in the control group did not show a statistically significant increase. Additionally, exposure to the high worry condition was predictive of engaging in actual information seeking behavior about EOL care. Results of the experiment indicate worry is associated with greater motivation to engage in information seeking about ACP and AD. This study contributes to the literature on worry as a persuasive mechanism to motivate patients to engage in important preventative health behaviors.
Background: Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery.
Methods: Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis.
Results: Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients’ families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers’ most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation.
Conclusions: The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30–50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.
Aim: Volunteers play a key role in hospice and palliative service. This study was performed to investigate the motivations of Korean hospice volunteers and to identify the predictors that affect their service period.
Materials and Methods: The accomplished questionnaire sheets of 93 subjects were included in the analysis. Inventory of Motivations for Hospice Palliative Care Volunteerism to measure the motivations of the hospice volunteers was used. The collected data were subjected to a statistical analysis of the mean and standard deviation, a t-test, and multinomial logistic regression analysis.
Results: The motivation score of the hospice volunteers in South Korea is 75.57 ± 10.97, and the top three in the motivation list were altruism, civic responsibility, and self-promotion. Among the subdomains, altruism, 1-4-year working experience (B = 0.79, standard error (SE) = 0.26, P = 0.002, Exp (B) =0.45), and more than 10-year working experience (B = 1.00, SE = 0.30, P = 0.001, Exp (B) =0.36) had statistically significant influences.
Conclusions: The finding of this study can be used as basic information for the recruitment and management of hospice volunteers in South Korea.
INTRODUCTION: Significant number of women present with advanced-stage breast cancer in Ghana. These women usually depend on family caregivers for their multi-dimensional needs. Yet, there are gaps in research about what motivates family caregivers to assume the caring role and their experiences with caregiving within the Ghanaian context.
AIM: To explore and describe the caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer.
METHODS: In-depth, semi-structured qualitative interviews were conducted with 15 family caregivers who were providing unpaid care for women living with advanced breast cancer. Colaizzi's thematic analysis was used to analyze the data.
RESULTS: Family relationship normally prescribed the caregiving role among family caregivers. Due to the lack of home-based palliative services in Ghana, findings suggest that family caregivers are the main managers of advanced breast cancer-related symptoms in the home. These findings are discussed under three major themes: (i) motivation for assuming the caregiving role; (ii) meeting self-care and psychosocial needs of the patient; and (iii) symptom management and monitoring.
CONCLUSION: Socio-cultural values influence the role of family caregivers in Ghana. This presents opportunities for health professionals and relevant stakeholders to develop a culturally-appropriate intervention to support informal caregivers in their home-based care for women living with advanced breast cancer in Ghana.
CONTEXT: Palliative care clinicians often have challenging conversations with patients or family caregivers who express ambivalence about goals or feel reluctant to discuss topics. Motivational Interviewing (MI) has tools to address ambivalence and reluctance.
OBJECTIVE: The aim of this pilot was to test the feasibility, acceptability, and preliminary efficacy of an MI communication coaching intervention.
METHODS: We enrolled 22 palliative care clinicians and randomly assigned half to receive communication coaching vs. waitlist control. The coaching entailed: a lecture on MI, a 1:1 session to discuss applying MI, and audio recording and receiving feedback on four encounters (2 separate times). Palliative care clinicians in the waitlist control arm audio recorded four encounters. Coders blinded to study arm coded MI behaviors. We surveyed patients, caregivers, and clinicians after all audio recorded encounters to assess perceptions of the encounter. The analyses were performed using a repeated-measures mixed model.
RESULTS: We found the intervention to be feasible and acceptable. 86% of those enrolled completed all study activities including coaching sessions, audio recording encounters, and completing surveys. Of those in the intervention arm, 88% rated the intervention as helpful and 100% would recommend it to a colleague. Compared to control clinicians, intervention clinicians had higher ratings of their MI skills post-intervention, higher objectively rated communication skills, and slightly better burnout scores. We found no arm differences in patient, caregiver, or clinician ratings of satisfaction.
CONCLUSION: This pilot indicates that coaching palliative care clinicians is feasible and shows promise that coaching can improve palliative care clinician communication.
OBJECTIVES: During their careers, all doctors will be involved in the care of the dying, and this is likely to increase with current demographic trends. Future doctors need to be well-prepared for this. Little is known about medical students' expectations about providing palliative care. Our aim was to investigate how satisfying students expect palliative care to be, and any attitudes towards palliative care associated with a negative expectation.
METHODS: Fifteen UK medical schools participated in the study, with 1898 first and final year students completing an online questionnaire which investigated how satisfying they expect providing palliative care to be and their attitudes towards palliative care.
RESULTS: At both the beginning and end of their training, a significant proportion of students expect palliative care to be less satisfying than other care (19.3% first year, 16% final year). Students expecting palliative care to be less satisfying were more likely to be men, and their attitudes suggest that while they understand the importance of providing palliative care they are concerned about the potential impact of this kind of work on them personally.
CONCLUSIONS: Medical student education needs to address why palliative care is important and how to deliver it effectively, and the strategies for dealing positively with the impact of this work on future clinicians.
Researchers have been interested in the subject of accompanying individuals who experienced a child’s terminal illness and death, sharing their grief online. Using The Reiss Motivation Profile and qualitative methods, the authors identified the life motives of emotional rubberneckers–grief blog and memorial page readers. Key reasons for the regular behavior of this kind are found: interest in the protagonist’s health, compassion, will to help, and sense of bonding. Such activity provides support to the respondents. Readers’ important life motives include the substantial need to care for their loved ones, to be needed, emotional stability, and a low need for power.
PURPOSE: To determine motives and attitudes towards life-sustaining treatments (LSTs) by clinical and preclinical medical students.
METHODS: This was a scenario-based questionnaire that presented patients with a limited life expectancy. The survey was distributed among 455 medical students in preclinical and clinical years. Students were asked to rate their willingness to perform LSTs and rank the motives for doing so. The effect of medical education was then investigated after adjustment for age, gender, religion, religiosity, country of origin, and marital status.
RESULTS: Preclinical students had a significantly higher willingness to perform LSTs in all cases. This was observed in all treatments offered in cases of a metastatic oncologic patient and an otherwise healthy man after a traumatic brain injury (TBI). In the case of an elderly woman on long-term care, preclinical students had higher willingness to supply vasopressors but not perform an intubation, feed with a nasogastric tube, or treat with a continuous positive air-pressure ventilator. Both preclinical and clinical students had high willingness to perform resuscitation on a twelve-year-old boy with a TBI. Differences in motivation factors were also seen.
DISCUSSION: Preclinical students had a greater willingness to treat compared to clinical students in all cases and with most medical treatments offered. This is attributed mainly to changes along the medical curriculum. Changes in reasons for supplying LSTs were also documented.
Parce qu'il expose le bénévole à sa propre fragilité, l'engagement dans le bénévolat d'accompagnement auprès des personnes gravement malades, en fin de vie ou dans des situations de grande dépendance, n'est pas un projet abouti. Il a besoin d'être soutenu et nourri pour se renouveler en permanence. Mails il peut arriver aussi qu'il ne fasse plus sens.
L'association réunit un groupe de lecture de la revue, conçu comme un moyen de formation continue pour nos bénévoles accompagnants. Il s'agit bien, dans l'expérience que nous en avons, d'un moment d'information mais sourtout d'échanges de nos pratiques d'accompagnement. C'est aussi un moyen de soutenir la motivation des bénévoles et leur sentiment d'appartenance à un courant fort qui met l'humain au coeur de leur engagement.
Advance care planning for persons with chronic kidney disease is under-utilized despite evidence it can improve care at the end of life. Motivational interviewing and Stages of Change Theory can help healthcare professionals elicit behavior change. This article outlines an approach to advance care planning using motivational interviewing with a healthcare coach to assist patients in expressing their unique values and wishes regarding care at the end of life. This Make Your Wishes About You (MY WAY) approach to advance care planning for patients with chronic kidney disease includes patient education material and a coach training curriculum freely available from the Coalition for Supportive Care of Kidney Patients.
Facebook not only changed the way we communicate but also the way we mourn and express grief. The social networking site allows users to interact with deceased users’ walls after death. This study utilized textual analysis to categorize Facebook posts (N = 122) on 30 deceased users’ walls according to uses and gratifications theory. Most posts were found to be motivated by entertainment, followed by integration and social interaction. Facebook users posted memories, condolences, and interacted with friends and family members in the deceased user’s network. Implications and potential future research are discussed.
CONTEXT: With the current and projected shortage of palliative care (PC) specialists, an integrative model of PC will be needed to meet the needs of patients in intensive care units (ICUs). Prior studies of PC interventions suggest that success depends upon meeting the needs of individual institutions or ICUs.
OBJECTIVE: The objective of this study was to qualitatively explore the beliefs and practices of one institution's medical ICU (MICU) physicians in regard to providing an integrative model of PC.
METHODS: This qualitative study used semistructured interviews of 17 physicians within a Department of Allergy, Pulmonary, and Critical Care Medicine at one large academic hospital. Interviews were conducted, transcribed, and coded according to qualitative research methods. Selected interviews were tested for interrater reliability and negotiated agreeability.
RESULTS: All critical care physicians interviewed affirmed that providing PC was part of their job, and the majority expressed that providing PC gave them professional or personal satisfaction. Physicians also identified many ways that PC consultants enhance patient care in the MICU. They discussed several motivations for obtaining a PC consult, with the most frequently acknowledged motivation being lack of time.
CONCLUSION: Developing an integrative model of PC in the ICU ought to take into account both studied interventions shown likely to be effective in the ICU setting and the specific needs and barriers to PC in that unit. This study demonstrates one way that needs and barriers can be identified and provides important findings that might be applicable to other institutions.
Advance care planning (ACP) does not readily occur in medical settings and often gets missed. Older Latinos need ACP information to encourage advance directive (AD) completion indicating preferences for end-of-life (EOL) care.
OBJECTIVE: To explore the experiences with counseling using motivational interviewing (MI) techniques and social workers to encourage ACP communication among older Latinos with advance chronic diseases. This study describes stages of readiness to plan for EOL care.
DESIGN: We conducted a qualitative study with older Latinos who participated in a community-based intervention in Southern New Mexico.
METHODS: Participants in the intervention were selected because they received ACP education plus counseling involving MI to address resistance to ACP. Motivational interviewing counseling involved the following: (1) engaging in structured dialogue about ACP, (2) using and completing AD documentation, (3) encouraging ACP communication with providers and families, and (4) applying AD information into actionable behavior. We utilized a constant comparative method and thematic analysis to explore the meaning of older Latinos' experiences with MI counseling and stages of change.
RESULTS: Participants (n = 32) were mostly women (74.3%), half born in the United States and half from Mexico in the United States on average for 31.75 (standard deviation 16.22) years. Many had less than sixth grade education (31.3%) or had not completed high school (21.9%). Key themes indicate the following stages of change: (1) precontemplation, (2) contemplation, (3) preparation, (4) ACP action, and (5) maintenance.
CONCLUSION: This study contributes to the literature by identifying areas for adaption to enhance understanding and increase information to ultimately achieve the completion of ACP among Latinos.
BACKGROUND: Morbidity arising from unprepared bereavement is a problem that affects close personal relations of individuals at the end-of-life. The bereavement studies literature demonstrates that a lack of preparedness for a loved one's death is a risk factor for secondary psychological morbidity among survivors. Short awareness time of death negatively correlates to preparedness for bereavement. The absence of disclosure of end-of-life diagnosis and prognosis to close personal relations ('death talk') between patients and loved ones, or health professionals and loved ones, may contribute to short awareness time of death. To increase awareness time of death, we might attempt to increase patient first-personal disclosure of end-of-life diagnosis and prognosis to loved-ones, and/or patient consent to health professional disclosure of the same.
MAIN TEXT: Interventions based on motivational interviewing in end-of-life care whose aim is to facilitate death talk, either by the patient directly, or by a health professional with the patient's consent, may offer a part solution to the problem of unprepared bereavement. This paper evaluates the ethical permissibility of such interventions. We consider two ethical objections to using motivational interviewing in this way: first, that it is inappropriate for practitioners to seek disclosure as an outcome in this setting; second, that aiming at disclosure risks manipulating individuals into death talk. While it need not be impermissible to direct individuals toward disclosure of end-of-life diagnosis/prognosis, the objection from manipulation implies that it is pro tanto ethically preferable to use motivational interviewing in a non-directive mode in death talk conversations. However, insofar as non-directive motivational interviewing requires more advanced skills, and thus may be more difficult to learn and to practise, we advance that it may be ethically permissible, all things considered, to employ directional, or specific outcome-oriented, motivational interviewing.
CONCLUSION: Motivational interviewing interventions in end-of-life care whose aim is to facilitate death talk, either by the patient directly, or by a health professional with the patient's consent may be ethically permissible, all things considered.
BACKGROUND: Sweden has a policy of supporting older people to live a normal life at home for as long as possible. Therefore, it is often the oldest, most frail people who move into nursing homes. Nursing home staff are expected to meet the existential needs of the residents, yet conversations about death and dying tend to cause emotional strain. This study explores organizational readiness to implement palliative care based on evidence-based guidelines in nursing homes in Sweden. The aim was to identify barriers and facilitators to implementing evidence-based palliative care in nursing homes.
METHODS: Interviews were carried out with 20 managers from 20 nursing homes in two municipalities who had participated along with staff members in seminars aimed at conveying knowledge and skills of relevance for providing evidence-based palliative care. Two managers responsible for all elderly care in each municipality were also interviewed. The questions were informed by the theory of Organizational Readiness for Change (ORC). ORC was also used as a framework to analyze the data by means of categorizing barriers and facilitators for implementing evidence-based palliative care.
RESULTS: Analysis of the data yielded ten factors (i.e., sub-categories) acting as facilitators and/or barriers. Four factors constituted barriers: the staff's beliefs in their capabilities to face dying residents, their attitudes to changes at work as well as the resources and time required. Five factors functioned as either facilitators or barriers because there was considerable variation with regard to the staff's competence and confidence, motivation, and attitudes to work in general, as well as the managers' plans and decisional latitude concerning efforts to develop evidence-based palliative care. Leadership was a facilitator to implementing evidence-based palliative care.
CONCLUSIONS: There is a limited organizational readiness to develop evidence-based palliative care as a result of variation in the nursing home staff's change efficacy and change commitment as well as restrictions in many contextual conditions. There are considerable individual- and organizational-level challenges to achieving evidence-based palliative care in this setting. The educational intervention represents one of many steps towards developing a culture conducive to evidence-based nursing home palliative care.
BACKGROUND: In 2015, an evidence- and consensus-based palliative care guideline in adults with incurable cancer was published by the German Guideline Program. Barriers and enablers for the guideline implementation of members of the German Association for Palliative Medicine (DGP) were unknown. Therefore, the aims of this study were (1) to evaluate professionals' knowledge, motivation, and outcome expectancy towards already existing recommendations for palliative care and (2) to evaluate the self-experienced competence in five medical key topics presented in the new guideline.
METHODS: A web-based online survey with all DGP members in 2014 using a specifically designed questionnaire including 62 questions was used. Independent predictors for identified barriers were analysed using multivariable logistic regression analyses.
RESULTS: All 4786 members with known email address were invited, 1181 followed the link, 1138 began to answer, and 1031 completed the questionnaire. Fifty-four percent know already existing recommendations concerning palliative care, 8.4% know and use these recommendations; of the latter group, 44.2% do not notice any improvement of their treatment when applying them. Of key symptoms addressed in the guideline, depression was the symptom with lowest perceived competence (63.7 vs. > 90% for other symptoms). Non-physicians and those working in settings with little contact to seriously ill or dying patients feel less competent in almost all symptoms.
CONCLUSION: Emphasis on the high-quality and evidence- and consensus-based character of the guideline should be underlined in future implementation processes. Implementation strategies should focus on depression and non-physicians and those professionals working in settings with little contact to seriously ill patients.
OBJECTIVES: To compare outpatients from private practices and outpatients from a university clinic regarding the determinants of completion of advance directives (AD) in order to generalise results of studies from one setting to the other. Five determinants of completion of AD were studied: familiarity with AD, source of information about AD, prior experiences with own life-threatening diseases or family members in need of care and motives in favour and against completion of AD.
DESIGN: Observational cross-sectional study.
SETTING: Private practices and a university clinic in Germany in 2012.
PARTICIPANTS: 649 outpatients from private practices and 2158 outpatients from 10 departments of a university clinic.
OUTCOME MEASURES: Completion of AD, familiarity with AD, sources of information about AD (consultation), prior experiences (with own life-threatening disease and family members in need of care), motives in favour of or against completion of AD, sociodemographic data.
RESULTS: Determinants of completion of AD did not differ between outpatients from private practices versus university clinic outpatients. Prior experience with severe disease led to a significantly higher rate of completion of AD (33%/36% with vs 24%/24% without prior experience). Participants with completion of AD had more often received legal than medical consultation before completion, but participants without completion of AD are rather aiming for medical consultation. The motives in favour of or against completion of AD indicated inconsistent patterns.
CONCLUSIONS: Determinants of completion of AD are comparable in outpatients from private practices and outpatients from a university clinic. Generalisations from university clinic samples towards a broader context thus seem to be legitimate. Only one-third of patients with prior experience with own life-threatening diseases or family members in need of care had completed an AD as expression of their autonomous volition. The participants' motives for or against completion of AD indicate that ADs are considered a kind of 'negative autonomy' as instruments to prevent particular forms of therapy. Interactive, repeated and situation-based AD discussions might reach a higher percentage of patients and concurrently enable personal volitions and thereby strengthen individual 'positive autonomy'.
L'auteure a mené une réflexion sur la notion d’isolement de la personne âgée en institution induite par le bouleversement de la dynamique familiale.
Elle a lancé une enquête dans les unités de soins de longue durée (USLD). L’analyse des données de l’outil d’enquête l’a conduite à réfléchir sur les conditions d’admission en institution de la personne âgée et sur l’attitude des soignants dans le vécu quotidien des résidents.
[D'après la conclusion]
The objectives of this study were to examine (1) the extent to which hospice palliative care volunteers are involved in program and patient/family advocacy, (2) volunteers' willingness to engage in program and patient/family advocacy, and (3) volunteers' perceived needs for training on how to be an effective advocate. Thirty-four hospice palliative care volunteers responded to the survey developed for this study. The majority of the volunteers surveyed consider themselves advocates for their programs and many of those, who have not already done so, would be willing to promote their program (eg, give a community presentation, talk to local media) if asked. Half of the volunteers were aware of unmet needs of the patients/families they supported, and just over one-third wanted to advocate on behalf of their patients/families but did not know what to do or where to go. Recommendations for volunteer training are made.