Strengthening the spiritual domain in palliative care through a listening consultation service by spiritual caregivers in Dutch PaTz-groups: an evaluation study.

BACKGROUND: Palliative care should be holistic, but spiritual issues are often overlooked. General practitioners and nurses working together in PaTz-groups (palliative home care groups) consider spiritual issues in palliative care to be relevant, but experience barriers in addressing spiritual issues and finding spiritual caregivers. This study evaluates the feasibility and perceived added value of a listening consultation service by spiritual caregivers in primary palliative care. METHODS: From December 2018 until September 2019, we piloted a listening consultation service in which spiritual caregivers joined 3 PaTz-groups whose members referred patients or their relatives with spiritual care needs to them. Evaluation occurred through (i) monitoring of the implementation, (ii) in-depth interviews with patients (n = 5) and involved spiritual caregivers (n = 5), (iii) short group interviews in 3 PaTz-groups (17 GPs, 10 nurses and 3 palliative consultants), and (iv) questionnaires filled out by the GP after each referral, and by the spiritual caregiver after each consultation. Data was analysed thematically and descriptively. RESULTS: Consultations mostly took place on appointment at the patients home instead of originally intended walk-in consultation hours. Consultations were most often with relatives (72%), followed by patients and relatives together (17%) and patients (11%). Relatives also had more consecutive consultations (mean 4.1 compared to 2.2 for patients). Consultations were on existential and relational issues, loss, grief and identity were main themes. Start-up of the referrals took more time and effort than expected. In time, several GPs of each PaTz-group referred patients to the spiritual caregiver. In general, consultations and joint PaTz-meetings were experienced as of added value. All patients and relatives as well as several GPs and nurses experienced more attention for and awareness of the spiritual domain. Patients and relatives particularly valued professional support of spiritual caregivers, as well as recognition of grief as an normal aspect of life. CONCLUSIONS: If sufficient effort is given to implementation, listening consultation services can be a good method for PaTz-groups to find and cooperate with spiritual caregivers, as well as for integrating spiritual care in primary palliative care. This may strengthen care in the spiritual domain, especially for relatives who are mourning.

Variation in the implementation of PaTz: a method to improve palliative care in general practice - a prospective observational study.

BACKGROUND: PaTz (palliative care at home) is a method to improve palliative care in the primary care setting in the Netherlands. PaTz has three basic principles: (1) local GPs and DNs meet at least six times per year to identify and discuss their patients with a life-threatening illness; (2) these meetings are supervised by a specialist palliative care professional; (3) groups use a palliative care register on which all identified patients are listed. Since the start in 2010, the number of PaTz-groups in the Netherlands has been growing consistently. Although the theory of all PaTz-groups is the same, the practical functioning of PaTz-groups may vary substantially, which may complicate further implementation of PaTz as well as interpretation of effect studies. This study aims to describe the variation in practice of PaTz-groups in the Netherlands. METHOD: In this prospective observational study, ten PaTz-groups logged and described the activities in their meetings as well as the registered and discussed patients and topics of discussions in registration forms for a 1 year follow-up period. In addition, non-participatory observations were performed in all participating groups. Meeting and patient characteristics were analysed using descriptive statistics. Conventional content analysis was performed in the analysis of topic discussions. RESULTS: While the basic principles of PaTz are found in almost every PaTz-group, there is considerable variation in the practice and content of the meetings of different PaTz-groups. Most groups spend little time on other topics than their patients, although the number of patients discussed in a single meeting varies considerably, as well as the time spent on an individual patient. Most registered patients were diagnosed with cancer and patient discussions mainly concerned current affairs and rarely concerned future issues. CONCLUSION: The basic principles are the cornerstone of any PaTz-group. At the same time, the observed variation between PaTz-groups indicates that tailoring a PaTz-group to the needs of its participants is important and may enhance its sustainability. The flexibility of PaTz-groups may also provide opportunity to modify the content and tools used, and improve identification of palliative patients and advance care planning.

Spiritual care at the end of life in the primary care setting: experiences from spiritual caregivers - a mixed methods study.

BACKGROUND: Spiritual care is an important aspect of palliative care. In the Netherlands, general practitioners and district nurses play a leading role in palliative care in the primary care setting. When they are unable to provide adequate spiritual care to their patient, they can refer to spiritual caregivers. This study aimed to provide an overview of the practice of spiritual caregivers in the primary care setting, and to investigate, from their own perspective, the reasons why spiritual caregivers are infrequently involved in palliative care and what is needed to improve this. METHOD: Sequential mixed methods consisting of an online questionnaire with structured and open questions completed by 31 spiritual caregivers, followed by an online focus group with 9 spiritual caregivers, analysed through open coding. RESULTS: Spiritual caregivers provide care for existential, relational and religious issues, and the emotions related to these issues. Aspects of spiritual care in practice include helping patients find meaning, acceptance or reconciliation, paying attention to the spiritual issues of relatives of the patient, and helping them all to say farewell. Besides spiritual issues, spiritual caregivers also discuss topics related to medical care with patients and relatives, such as treatment wishes and options. Spiritual caregivers also mentioned barriers and facilitators for the provision of spiritual care, such as communication with other healthcare providers, having a relationship of trust and structural funding.. In the online focus group, local multidisciplinary meetings were suggested as ideal opportunities to familiarize other healthcare providers with spirituality and promote spiritual caregivers' services. Also, structural funding for spiritual caregivers in the primary care setting should be organized. CONCLUSION: Spiritual caregivers provide broad spiritual care at the end of life, and discuss many different topics beside spiritual issues with patients in the palliative phase, supporting them when making medical end-of-life decisions. Spiritual care in the primary care setting may be improved by better cooperation between spiritual caregiver and other healthcare providers, through improved education in spiritual care and better promotion of spiritual caregivers' services.

The association between PaTz and improved palliative care in the primary care setting: a cross-sectional survey.

BACKGROUND: The PaTz-method (acronym for Palliatieve Thuiszorg, palliative care at home) is perceived to improve coordination, continuity and communication in palliative care in the Netherlands. Although important for further implementation, research showing a clear effect of PaTz on patient-related outcomes is scarce. This study aimed to examine perceived barriers and added value of PaTz and its association with improved care outcomes. METHODS: Ninety-eight Dutch general practitioners and 229 Dutch district nurses filled out an online questionnaire with structured questions on added value and barrier perception of PaTz-participation, and palliative care provided to their most recently deceased patient, distributed online by Dutch medical and nurses' associations. Data from PaTz-participants and non-participants was compared using Chi-square tests, independent t-tests and logistic regression analyses. RESULTS: While both PaTz-participants and non-participants perceived PaTz to be beneficial for knowledge collaboration, coordination and continuity of care, time (or lack thereof) is considered the most important barrier for participation. PaTz-participation is associated with discussing five or more end-of-life topics with patients (OR = 3.16) and with another healthcare provider (OR = 2.55). PaTz-participation is also associated with discussing palliative sedation (OR = 3.85) and euthanasia (OR = 2.97) with another healthcare provider. Significant associations with other care outcomes were not found. CONCLUSIONS: General practitioners and district nurses feel that participating in a PaTz-group has benefits, but perceive various barriers for participation. While participating in a PaTz-group is associated with improved communication between healthcare providers and with patients, the effect on patient outcomes remains unclear. To stimulate further implementation, future research should focus on the effect of PaTz on tangible care characteristics and how to facilitate participation and remove barriers.

Experiences of Dutch general practitioners and district nurses with involving care services and facilities in palliative care: a mixed methods study.

BACKGROUND: Generals practitioners (GPs) and district nurses (DNs) play a leading role in providing palliative care at home. Many services and facilities are available to support them in providing this complex care. This study aimed to examine the extent to which GPs and DNs involve these services, what their experiences are, and how involvement of these services and facilities can be improved. METHODS: Sequential mixed methods consisting of an online questionnaire with structured and open questions completed by 108 GPs and 258 DNs, followed by three homogenous online focus groups with 8 GPs and 19 DNs, analyzed through open coding. RESULTS: Most GPs reported that they sometimes or often involved palliative home care teams (99%), hospices (94%), and palliative care consultation services (93%). Most DNs reported sometimes or often involving volunteers (90%), hospices (88%), and spiritual caregivers (80%). The least involved services and facilities were psychologists and psychiatrists (51% and 50%) and social welfare (44% and 57%). Main reason for not involving services and facilities was 'not needing' them. If they had used them, most GPs and DNs (68-93%) reported solely positive experiences. Hardly anyone (0-3%) reported solely negative experiences with any of the services and the facilities. GPs and DNs suggested improvements in three areas: (1) establishment of local centers giving information on available services and facilities, (2) presentation of services and facilities in local multidisciplinary meetings, and (3) support organizations to proactively offer their facilities and services. CONCLUSION: Psychological, social, and spiritual services are involved less often, suggesting that the classic care model, which focuses strongly on somatic issues, is still well entrenched. More familiarity with services that can provide additional care in these areas, regarding their availability and their added value, could improve the quality of life for patients and relatives at the end of life.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

PURPOSE: Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. METHODS: Fifty-four physicians were interviewed on their most recent case of palliative sedation. RESULTS: Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. CONCLUSION: Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.