Advance Care Planning in the Netherlands.

The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches.

Role-Perceptions of Dutch Spiritual Caregivers in Implementing Multidisciplinary Spiritual Care: A National Survey.

BACKGROUND: During the course of their disease, patients are, apart from suffering physical discomfort, also confronted with psychological, social, and spiritual challenges. However, healthcare professionals often lack the knowledge and skills to address the spiritual dimension and are in need of support for taking this responsibility. Spiritual caregivers are experts in spiritual care, but their contribution to the integration of this care by other healthcare professionals is largely unknown. OBJECTIVE: The aim of this study was to investigate how Dutch spiritual caregivers view their role in increasing the integration of spiritual care in daily healthcare practice as provided by other healthcare professionals in the Netherlands, and how they address this role. METHODS: An online survey was conducted from May until June 2021 among spiritual caregivers working in Dutch healthcare. Data were analysed using descriptive statistics. RESULTS: The majority of the 174 respondents answered that they already fulfil a role in the integration of spiritual care by, for example, providing education, coaching on the job, or participating in multidisciplinary consultation. However, the majority of respondents experienced barriers to their contribution, such as confusion of terminology and use of language while collaborating with other healthcare professionals and reluctance to share information. CONCLUSIONS: While spiritual caregivers realise having the potential to make important contributions to the further process of integration of spiritual care into the daily practice of other healthcare professionals, some practices and perceptions, especially from within their own discipline, may hamper this.

"When I am breathless now, I don't have the fear that's linked to it": a case series on the potential of EMDR to break the dyspnea-anxiety cycle in COPD.

BACKGROUND: Expectations can enhance the intensity and the neural processing of breathlessness. Previous breathlessness episodes may influence the perception of subsequent episodes because of psycho-traumatic consequences. In post-traumatic stress disorder, eye movement desensitization and reprocessing (EMDR) is the therapy of choice. AIMS AND OBJECTIVES: We explored the hypothesis that EMDR in patients with chronic obstructive pulmonary disease (COPD) and previous severe breathlessness episodes, improves breathlessness mastery by decreasing the anxiety component. METHODS: As we found no literature on previous research on this subject, we undertook a qualitative case series on four patients with COPD GOLD 4/D and refractory breathlessness who wished to undergo EMDR for psychotraumatic breathlessness episodes. Amongst others, we used the Chronic Respiratory Disease Questionnaire (CRQ) before and after EMDR, and semi-structured, face-to-face, in-depth interviews. RESULTS: All patients had between three and five EMDR sessions. On CRQ, subset mastery, three patients had a large improvement and one patient a moderate improvement. On subset emotional functioning, three patients showed a large improvement and one showed no change. All patients made a distinction between 'regular' breathlessness and breathlessness intertwined with anxiety. They all stated that the anxiety component of their breathlessness diminished or disappeared. All four would recommend EMDR for other COPD patients. CONCLUSION: There is ground for a randomized controlled clinical trial to test the effects of EMDR on breathlessness mastery in a subset of COPD patients with previous severe breathlessness episodes and high levels of anxiety.

Identifying, exploring and integrating the spiritual dimension in proactive care planning: A mixed methods evaluation of a communication training intervention for multidisciplinary palliative care teams.

BACKGROUND: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. AIM: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients' care plans. DESIGN: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). SETTING/PARTICIPANTS: Three palliative care teams including nurses (N = 21), physicians (N = 14) and spiritual caregivers (N = 3). RESULTS: The questionnaires showed an improvement on 'Patient and family-centred communication' of the End-of-life professional caregiver survey (+0.37, p < 0.01; the 8-item S-EOLC (+0.54, p < 0.01) and regarding the Spiritual Care Competence Scale, on the three subscales used (+0.27, p < 0.01, +0.29, p < 0.01 and +0.32, p < 0.01). Video evaluations showed increased attention being paid to patient's aims and needs. The medical record review showed an increase in anticipation on the non-somatic dimension (OR: 2.2, 95% CI: 1.2-4.3, p < 0.05) and, using the Mount Vernon Cancer Network assessment tool, addressing spiritual issues (OR: 10.9, 95% CI: 3.7-39.5, p < 0.001). CONCLUSIONS: Our training intervention resulted in increased palliative care professionals' competence in identifying and exploring patients' spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients' spiritual concerns and adds value to their palliative care plans.

Spinal Cord Stimulation in Failed Back Surgery Syndrome: An Integrative Review of Quantitative and Qualitative Studies.

BACKGROUND: Spinal cord stimulation (SCS) is an established therapy of failed back surgery syndrome (FBSS), although the effects on daily functioning, quality of life (QoL), and patients' expectations, experiences, and satisfaction remain elusive. The current integrative review aimed to summarize the overall effects of SCS in patients with FBSS on pain relief, health-related QoL, and daily activities. MATERIALS AND METHODS: PubMed, CINAHL, Embase, ClinicalTrials.gov, gray literature, and reference lists of relevant articles were searched for additional papers. All included studies were assessed for risk of bias using the Mixed Methods Appraisal Tool. Following the methods of Whittemore and Knafl, an integrative review and a meta-analysis were performed. RESULTS: In total, 16 articles were included; 11 articles presented quantitative outcomes, and five articles presented qualitative data. Lower back pain, leg pain, overall pain, Oswestry Disability Index, EuroQol Five Dimensions Health Questionnaire three-level/five-level, and the physical component score of Short Form Health Survey (SF-36) significantly improved during all follow-up moments. Only the mental component score of the SF-36 did not significantly improve, compared with baseline. Heterogeneity was diversely present among the studies. Patients' expectations and goals were disparate, although patients seemed to desire a return to their pre-FBSS state. Experiences with regard to the outcomes showed that patients largely recuperated after SCS, although limitations were still present. Patients also expressed inconvenience with regard to the trial period, implantation location, and recharging of the implantable pulse generator. CONCLUSIONS: SCS showed beneficial effects on different domains of life in patients with FBSS. The quantitative analyses suggest an overall improvement in most domains, although patients' experiences show that limitations in daily life and living with the SCS system persist. Multiple extensive preoperative counseling sessions and discussions with patients are deemed necessary to improve patient satisfaction and meet their expectations. Shared decision-making and provision of complete information are key factors for success.

Haptotherapy for patients with cancer; experience of haptotherapists and reasons for consultation: A survey among haptotherapists.

BACKGROUND AND PURPOSE: Haptotherapy is a type of mind-body therapy that makes use of affective touch. This study aims to provide insights in reasons for haptotherapy for patients with cancer, and in experiences of haptotherapists with these patients. MATERIALS AND METHODS: In a cross-sectional study, a survey was conducted among 536 Dutch haptotherapists. Multiple-choice and open-ended questions were analyzed both quantitatively and qualitatively. RESULTS: Of 272 (50.7%) responding haptotherapists, 167 (61.5%) had experience with treating people with cancer. Most frequently, combinations of emotional problems and a disturbed body experience were reported as reasons for haptotherapy. Haptotherapists emphasized the need for affective touch to restore patients' body connection. CONCLUSION: Two-thirds of the respondents treat patients with cancer, addressing the interaction of body and mind. Reasons for consultation cover a wide range of problems in multiple dimensions, in which a disturbed body experience in combination with emotional problems is mentioned most often.

Experiences From the Patient Perspective on Spinal Cord Stimulation for Failed Back Surgery Syndrome: A Qualitatively Driven Mixed Method Analysis.

INTRODUCTION: When neither pharmacological therapies nor alternative interventions provide sufficient pain relief, spinal cord stimulation (SCS) can be used to treat Failed Back Surgery Syndrome (FBSS). Although it seems reasonable that quality of life (QoL)- and psychosocial-related factors contribute to the outcome of SCS since pain is a multidimensional experience, few qualitative studies have explored the expectations of SCS and experiences on SCS to treat FBSS from the patient perspective. OBJECTIVES: The aim of this study was to qualitatively and quantitatively map the FBSS patients' experiences with SCS and the effects of SCS on low back pain caused by FBSS. MATERIALS AND METHODS: A qualitative study with in-depth semi-structured interviews, assisted by the Brief Pain Inventory (BPI)-questionnaire. RESULTS: Seven themes regarding patients' experiences, subdivided into 15 categories, were identified, including an understudied theme within this field of research, Spiritual Well-Being. "Acceptance" and "coping" emerged as pre-eminent motifs throughout these themes. Moreover, the realization of patients' expectations were variable throughout the presented themes. According to the BPI Questionnaire, four out of 13 patients (31%) had significant pain relief (≥50%). Seven out of 13 (54%) reported a ≥50% increase regarding enjoyment of life. CONCLUSION: Multiple QoL- and psychosocial-related themes are related to SCS-outcomes. In order to improve SCS-outcomes for both short- and long-term, these themes should be implemented as a multidimensional approach, both prior to implantation as during follow-up.

A cluster randomized controlled trial on a multifaceted implementation strategy to promote integrated palliative care in COPD: study protocol of the COMPASSION study.

BACKGROUND: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. METHODS: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. DISCUSSION: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care. TRIAL REGISTRATION: Netherlands Trial Register (NTR): NL7644 . Registration date: April 7, 2019.

The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study.

BACKGROUND: ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia. METHODS: A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes. RESULTS: Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers. CONCLUSIONS: ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.

Nurses Exploring the Spirituality of Their Patients With Cancer: Participant Observation on a Medical Oncology Ward.

BACKGROUND: Attention for spirituality should be an integral part of professionals' caregiving. Particularly, nurses caring for patients with cancer might have opportunities to give attention to this dimension. OBJECTIVE: The aim of this study was to gain insight in the way and extent to which nurses during daily caregiving observe and explore spiritual issues of hospitalized patients with cancer. METHODS: We performed an ethnographic study with participant observation. Data were collected in 2015 during 4 shifts at the medical oncology department of a university hospital. The researcher, a spiritual care provider (chaplain) wearing the same kind of uniform as the nurses, observed the nurses, participated in their actions, and interviewed them after the shift. RESULTS: Although the patients did send many implicit and explicit messages concerning spiritual issues, the nurses did not explore them. If noticed, 3 barriers for exploring spiritual issues were mentioned by the nurses: lack of time, conflict with their mindset, and being reserved to talk about such issues. CONCLUSIONS: During their daily caregiving to patients with a life-threatening illness, nurses have many opportunities to explore spiritual issues, but they do not often recognize them. If they do, they tend not to explore the spiritual issues. IMPLICATIONS FOR PRACTICE: Communication training for nurses is necessary to develop skills for exploring the spiritual dimension in patients with cancer. In such training, attention to the misconception that such a conversation requires a lot of time and for recognizing signals from patients inviting an exploration of their concerns is necessary.

The use of Quality-Adjusted Life Years in cost-effectiveness analyses in palliative care: Mapping the debate through an integrative review.

BACKGROUND: In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. AIM: To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care. DESIGN: The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. DATA SOURCES: A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. FINDINGS: Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. CONCLUSION: The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to-in addition to the EQ-5D- make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year.

Comprehensive and Integrated Palliative Care for People With Advanced Chronic Conditions: An Update From Several European Initiatives and Recommendations for Policy.

The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.

Implementation of improvement strategies in palliative care: an integrative review.

BACKGROUND: The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care. METHODS: Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy. RESULTS: From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies). CONCLUSIONS: This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care.

The effect of small peer group continuous quality improvement on the clinical practice of midwives in The Netherlands.

OBJECTIVE: To study the effects of small group continuous quality improvement (CQI) on the clinical practice of midwives in the Netherlands. DESIGN: Randomised pre-/post-test (balanced block). INTERVENTION: The CQI groups were assigned to either the set of peer review topics including 'perineal repair' and 'artificial rupture of the membranes (ARM)', or to the set of topics including 'airway aspiration' and 'measuring blood pressure'. The two research groups acted as each other's control group. SETTING: The Netherlands. PARTICIPANTS: Two hundred and fifty-five individual midwives practising in primary and secondary care who made up 28 peer groups. MEASUREMENT AND KEY FINDINGS: Questionnaires were used to collect data on clinical practice prior to the start of the intervention and one year later. Pre- and post-test data were received from 156 respondents. The intervention had a positive effect on adherence to the recommendations with respect to airway aspiration of the baby and measuring blood pressure. For ARM, no difference was found between pre- and post-test adherence to recommendations in the intervention group, while in the control group, the percentage of midwives that adhered to the recommendations decreased in the period between pre- and post-test. No significant effect was found for perineal repair. IMPLICATIONS FOR PRACTICE: Small group CQI had a positive effect on changing clinical practice when the learning of new skills (e.g. learning a new suturing technique) was not necessary. Additional interventions are needed when implementing guidelines that recommend the learning of new skills.