BACKGROUND: The Delphi technique is widely used for the development of guidance in palliative care, having impact on decisions with relevance for patient care. AIM: To systematically examine the application of the Delphi technique for the development of best practice guidelines in palliative care. DESIGN: A methodological systematic review was undertaken using the databases PubMed, CINAHL, Web of Science, Academic Search Complete and EMBASE. DATA SOURCES: Original articles (English language) were included when reporting on empirical studies that had used the Delphi technique to develop guidance for good clinical practice in palliative care. Data extraction included a quality appraisal on the rigour in conduct of the studies and the quality of reporting. RESULTS: A total of 30 empirical studies (1997-2015) were considered for full-text analysis. Considerable differences were identified regarding the rigour of the design and the reporting of essential process and outcome parameters. Furthermore, discrepancies regarding the use of terms for describing the method were observed, for example, concerning the understanding of a 'round' or a 'modified Delphi study'. CONCLUSION: Substantial variation was found concerning the quality of the study conduct and the transparency of reporting of Delphi studies used for the development of best practice guidance in palliative care. Since credibility of the resulting recommendations depends on the rigorous use of the Delphi technique, there is a need for consistency and quality both in the conduct and reporting of studies. To allow a critical appraisal of the methodology and the resulting guidance, a reporting standard for Conducting and REporting of DElphi Studies (CREDES) is proposed.

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Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review.

White Paper on standards and norms for hospice and palliative care in Europe : part 2.

Patients face difficult decisions about chemotherapy near the end of life. Such treatment might prolong survival or reduce symptoms but cause adverse effects, prevent the patient from engaging in meaningful life review and preparing for death, and preclude entry into hospice. Palliative care and oncology clinicians should be logical partners in caring for patients with serious cancers for which symptom control, medically appropriate goal setting, and communication are paramount, but some studies have shown limited cooperation. We illustrate how clinicians involved in palliative care and oncology can more effectively work together with the story of Mr L, a previously healthy 56-year-old man, who wanted to survive his lung cancer at all costs. He lived 14 months with 3 types of chemotherapy, received chemotherapy just 6 days before his death, and resisted entering hospice until his prognosis and options were explicitly communicated. Approaches to communication about prognosis and treatment options and questions that patients may want to ask are discussed.

The Role of Chemotherapy at the End of Life: “When Is Enough, Enough?”

The modern hospice movement was introduced by Cicely Saunders with the opening of St Christopher’s Hospice in London in 1967. However, as early as 1975, Balfour Mount found a confusion of terms when he looked for a designation for his new inpatient unit in Montreal, as in French-speaking Canada ‘hospice’ was already used in a different context, leading to the introduction of the term ‘palliative care’. The struggle for a common language has been going on since then in hospice and palliative care throughout the world and has hampered the development of international standards and norms. Recently, the European Association for Palliative Care (EAPC) commissioned a survey on the development of palliative care in European countries. The Task Force on the Development of Palliative Care in Europe, led by Carlos Centeno and David Clark, has just published the results in the EAPC Atlas of Palliative Care in Europe, providing for the first time valid data for comparison of the state of palliative care across European countries.1,2 This evaluation showed some common structures, but also a wide variety in the structure of service development and care delivery. These differences are at least partly related to different understanding of the underlying concepts and the terms of palliative medicine. The development of a common terminology has been claimed as a prerequisite for meaningful comparisons.3 Following this lead, the EAPC is now putting forward suggestions for a common European terminology following a consensus process with the national associations. Norms will be defined on the basis of this consensual terminology. Guidance on norms and standards are necessary not only for healthcare professionals working in hospice and palliative care settings, but also for decision-makers in healthcare who are responsible for adequate access to palliative care for patients. With the ongoing development of palliative care throughout Europe, decision-makers are challenged not only to decide where and when palliative care services should be developed, but also how they should be equipped and configured. Adequate structural quality is a prerequisite for high quality of care. Administrative and political decision-makers will aim for cost-effectiveness, and try to reduce costs by allocating a minimum of staff or reimbursement. Care providers will negotiate for adequate staff resources necessary for high quality of care. In this conflict, both sides will seek guidance on structural quality. In this paper, the EAPC presents norms on structural quality for the provision of palliative care with inand outpatient services in different settings. This White Paper takes into account the different concepts in the European countries and regions. This is acknowledged by the description of norms rather than the definition of standards. Whereas standards would imply an absolute limit below which quality palliative care is not possible (minimal standards), norms represent a consensus on quality goals that have to be aimed for (aspirational norms). If (or White Paper on standards and norms for hospice and palliative care in Europe: part 1

White paper on standards and norms for hospice and palliative care in Europe : part 1.

Objective: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.Methods: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.Results: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.Significance of results: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Caregiving at the end of life: perspectives from spousal caregivers and care recipients.

https://www.jpsmjournal.com/article/S0885-3924(02)00468-2/pdf

A model to guide patient and family care: Based on nationally accepted principles and norms of practice

Not just any old standards ... 2002 Canadian Hospice Palliative Care Association standards.

ABSTRACT Recognition and escalation of the deteriorating patient is multifaceted and relevant to all clinicians involved. However, little evidence exists exploring how clinicians from different professions make decisions about early signs of clinical deterioration and how this affects their actions. The aim of this study was to explore interprofessional clinicians’ and students’ experiences of responding to and escalating care of deteriorating patients. A convenience sample of clinicians and students from acute hospital settings in regional Australia participated in focus groups. Participants were able to identify barriers, facilitators, and strategies for improvement during the recognition and escalation of the deteriorating patient. Four themes were detected throughout the 38 focus group discussions: a Standardized Approach, Workplace Culture and Teamwork, Confidence and Experience, and Communication. Although standardization of systems and processes supported clinician’s recognition and escalation of the deteriorating patient, use and misuse of the systems by some participants were identified as barriers to seeking assistance. Positive workplace culture and teamwork were important to promoting the escalation of care. Participants identified that experience in recognizing and responding to deteriorating patients increased their confidence.

https://www.tandfonline.com/doi/pdf/10.1080/13561820.2022.2104231?needAccess=true&role=button

A qualitative study exploring clinicians’ attitudes toward responding to and escalating care of deteriorating patients

http://www.collegianjournal.com/article/S1322769622001007/pdf

Karen Bowen

Papers

A model to guide patient and family care: Based on nationally accepted principles and norms of practice

Not just any old standards ... 2002 Canadian Hospice Palliative Care Association standards.

A qualitative study exploring clinicians’ attitudes toward responding to and escalating care of deteriorating patients

Australian nurses' and midwives’ perceptions of their workplace environment during the COVID-19 pandemic

Clinicians' attitudes towards escalation and management of deteriorating patients: A cross-sectional study.