Abstract number: N-03 Abstract type: Poster
Dealing with Desire to Die in Palliative Care. Evaluation of a Communi- cation Intervention
Kremeike K.1, Boström K.1, Rosendahl C.1, Gehrke L.1, Dojan T.1, Voltz R.1,2,3
1University Clinic of Cologne, Department of Palliative Care, Cologne, Germany, 2University Clinic of Cologne, Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Cologne, Germany,
3University of Cologne, Clinical Trials Centre Cologne (ZKS), Cologne, Germany
Background: Many patients in palliative care (PPs) develop at least a temporary desire to die (DD), partly associated with psychological dis- tress. Although health practitioners (HPs) are often confronted with DD, uncertainty remains as to the right response. Therefore, a training and a semi-structured clinical approach (SSCA) were developed. In a recent study, the SSCA was finalized and HPs were trained in dealing with DD.
Trained HPs were asked to proactively address DD with their PP. Effects of these conversations were evaluated.
Aims: To evaluate the effects of a DD-conversation on PPs.
Methods: In a sequential mixed-method design, standardized interviews with PPs were conducted with validated questionnaires on depression, DD, death anxiety, relationship with HPs and hopelessness. After the first standardized interview (t0), trained HPs had a DD-conversation with their PPs. Two (t1) and six weeks later (t2) the standardized interview was repeated. Results were analysed using descriptive statistics.
Qualitative interviews were conducted with a patient sub-sample and analysed using content analysis.
Results: From 4/2018 to 3/2020, 43 HPs suggested 172 PPs of which 85 participated in t0. A complete data set (t0, DD-conversation, t1, t2) was collected for 47. Qualitative interviews were conducted with 13 PPs. PPs were 57% female, had a mean age of 69 years and heterogenous dis- eases (59% oncological, 13% neurological, 28% others). PPs depression severity decreased significantly from t0 to t1 (p = .001; effect size d = .44). At t2, this difference lost significance due to small sample size. All other outcomes showed positive trends. Qualitative data underlines positive effects: “Then it became clear to me that (. . .) I think about death in a completely different way. (...) I feel cared for, covered, so to speak, and if I have new ideas, I can address them.”
Conclusion: DD-conversations did not lead to a worsening in any out- come in PPs; but may alleviate depression.
Abstract number: N-04 Abstract type: Poster
Association between Perceptions of Involvement in Advance Care Planning and Emotional Functioning in Patients with Advanced Cancer:
Results of the Prospective, Multicenter, Observational eQuiPe Study Kroon L.L.1,2,3, van Roij J.1,4,5,6, Korfage I.J.7, Reyners A.K.8, van den Beuken-van Everdingen M.H.9, Mandigers C.M.10, Werner P.T.11, Nieboer P.12, Sommeijer D.W.13,14, de Jong W.K.15, van de Poll-Franse L.V.1,16,17, Raijmakers N.J.1,4, on behalf of the eQuipe Study Group
1Netherlands Comprehensive Cancer Organisation (IKNL), Research and Development, Utrecht, Netherlands, 2University Medical Center Groningen, Groningen, Netherlands, 3Vrije Universiteit Amsterdam, Amsterdam, Netherlands, 4Netherlands Association for Palliative Care (PZNL), Utrecht, Netherlands, 5Tilburg University, CoRPS – Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg, Netherlands, 6Libra Rehabilitation and Audiology, Tiburg, Netherlands, 7Erasmus University Medical Center, Department of Public Health, Rotterdam, Netherlands,
8University Medical Center Groningen, Department of Medical Oncology, Groningen, Netherlands, 9Maastricht University Medical Center, Center of Expertise Palliative Care, Maastricht, Netherlands,
10Canisius Wilhelmina Hospital, Department of Medical Oncology, Nijmegen, Netherlands, 11VieCuri Medical Center, Department of Medical Oncology, Venlo, Netherlands, 12Wilhelmina Hospital Assen, Department of Medical Oncology, Assen, Netherlands, 13FlevoHospital, Department of Internal Medicine, Almere, Netherlands, 14Amsterdam University Medical Centers, Department of Medical Oncology, Cancer Center Amsterdam, Amsterdam, Netherlands, 15Hospital Gelderse Vallei, Department of Pulmonology, Ede, Netherlands,
16Tilburg University, CoRPS – Center of Research on Psychology in Somatic Diseases, Department of Medical and Clinical Psychology,, Tilburg, Netherlands, 17The Netherlands Cancer Institute, Division of Psychosocial Research and Epidemiology, Amsterdam, Netherlands Background: Advance Care Planning (ACP) is positively associated with the quality of end-of-life care, but its impact on quality of life is ambiguous.
Aims: To investigate the association between perceptions of ACP involve- ment and emotional functioning in patients with advanced cancer.
Methods: This study analyzed baseline data from the eQuiPe study, a prospective, multicenter, observational study on quality of care and quality of life in patients with advanced cancer in the Netherlands.
Patients with metastatic solid cancer were recruited between November 2017 and January 2020. Patients’ perceptions of ACP involvement were measured by three statements on patients’ involvement in decisions about their future medical treatment and care
(1) and the engagement of their relatives (2) and physicians
(3) with their preferences regarding their future medical treat- ment and care.
Emotional functioning was measured by the EORTC-QLQ-C30. A linear multivariable regression analysis was performed on baseline data of 1,001 patients while taking gender, age, migrant background, education, marital status, and symptom burden into account.
Results: The majority of 1,001 patients with advanced cancer reported that they were as much involved as they wanted to be in decisions about their future medical treatment and care (87%). Most patients felt that their relatives (81%) and physicians (75%) were familiar with their pref- erences for their future medical treatment and care. Patients scored a mean of 75(SD 17) on their perceived involvement in ACP. A positive association was found between patients’ perceptions of ACP involve- ment and their emotional functioning (b=0.162, p<0.01) while control- ling for above mentioned confounders.
Conclusions: Perceptions of involvement in ACP are positively associ- ated with emotional functioning in patients with advanced cancer.
Future studies are needed to further investigate the effect of ACP on emotional functioning.
Abstract number: N-05 Abstract type: Poster
Dealing with Desire to Die in Palliative Care: Evaluation of a Training Program
Boström K.1, Rosendahl C.1, Dojan T.1, Frerich G.1, Romotzky V.2, Voltz R.1,3,4, Kremeike K.1
1University Clinic of Cologne, Department of Palliative Care, Cologne, Germany, 2University of Cologne, Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health, Cologne, Germany,
3University Clinic of Cologne, Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Cologne, Germany, 4University of Cologne, Clinical Trials Centre Cologne (ZKS), Cologne, Germany Background: Although health practitioners (HPs) are frequently con- fronted with desire to die (DD) in palliative care, they remain uncertain regarding the right response. Therefore, a training and a semi-structured clinical approach (SSCA) were developed. Within a mixed methods study, the SSCA was finalized and HPs were trained in using it when dealing with DD.
Aims: How do HPs report their self-confidence, knowledge, skills and attitude in dealing with DD before and after the training?
Methods: Implementation of two-day multi-professional trainings on dealing with DD, including an introduction to the use of the SSCA. HPs assessed their self-confidence, their knowledge of DD (functions and backgrounds, legal framework, distinction from suicidality), their skills in dealing with it (proactive approach, recognition of own stress) and their own attitude towards DD by means of a questionnaire before (t0), imme- diately after (t1) and one year after (t2) completion of the training. In t2, open questions were asked about the use of the SSCA. Trained HPs were asked to have DD-conversations with patients receiving palliative care and to reflect on them in writing.
Results: From 03/2018 - 01/2020, 103 HPs from different settings par- ticipated in 12 trainings. On average, they had 12 years of professional experience and were 48 years old, 75% were women. Self-confidence in dealing with DD increased significantly (p = .000, d = .74), this effect remained stable over one year (p = .000, d = .072). Knowledge of DD (t1: p = .000, d = .84; t2: p = .000, d = .81) and the ability to address them proactively (t1: p = .022, d = .25; t2: p = 0.001, d = .51) showed similarly stable significant improvements.
HPs described applicating training contents in patient conversations as well as the reflection of these conversations as enriching.
Discussion / conclusion: The long-term increased self-confidence of HPs in dealing with DD confirms the effectiveness of the training.
Abstract number: N-07 Abstract type: Poster
Palliative Care Research Knowledge Transfer - A Website Analysis of Comprehensive Cancer Centers
Berendt J.1, Gahr S.1, Heckel M.1, Ostgathe C.1
1University Hospital Erlangen Friedrich-Alexander-Universität Erlangen- Nürnberg & Comprehensive Cancer Center, CCC – EMN, Department of Palliative Medicine, Erlangen, Germany
Background: Comprehensive Cancer Centers (CCC) provide cutting-edge cancer medicine and research as well in the field of supportive and end- of-life care. Knowledge transfer, networking and patient and public involvement require visibility of research activities. How visible is pallia- tive care research on CCC websites?
Aim: Mapping web presence of palliative care research on German CCC websites.
Methods: Website analysis of CCC sites supported by the German Cancer Aid. Using a systematic content analysis two researchers (JB, SG) independently screened 20 websites in February 2021. A category sys- tem (e.g. research focus, number of projects, methods, publications, language, number of submenus) was established in advance. Relative frequencies, mean, median, minimum and maximum were evaluated.
Results: 12 palliative care departments have a drop down menu for pal- liative care research. In average, those had 3.8 submenus (median 3.0;
min=0; max=10). 10 sites provide information on individual research projects (current or completed). In median, 6.5 projects were presented (min=0; max=28). The research teams’ research focus is specified on 12, the method expertise on 8 websites. 5 websites use the English language for project title, description or working group introductions, in addition to the German language. Publications of the palliative care departments are listed on 8 of 20 websites.
Conclusion: Palliative care departments may miss opportunities to pro- vide information online about their research interests for networking and possible research cooperation, especially for international findabil- ity. Defining minimum standard content on palliative care research on CCC websites could improve visibility.
Funding: None.
Abstract number: N-08 Abstract type: Poster
Empowerment of Patients with Copd and/or Heart Failure to Express their Perspective to Healthcare Professionals: The Development of a Supportive Toolkit
Olde Wolsink - van Harlingen A.1, Groen - van de Ven L.2, Hasselaar J.3, Jukema J.1, Uitdehaag M.1, Vissers K.3
1Saxion University of Applied Sciences, Research Group Nursing, Deventer, Netherlands, 2Windesheim University of Applied Sciences, Research Group Living with Dementia, Zwolle, Netherlands, 3Radboud Medical Centre, Expertise Centre for Palliative Care, Nijmegen, Netherlands
Background: Patient’s perspective on their health, well-being and care is important to deliver person-centred care. This perspective, including knowledge, experiences, goals, needs, priorities and preferences, is not always expressed to healthcare professionals. Interviews and focus group sessions with patients, relatives and healthcare professionals were performed. This resulted in the identification of three challenges to communicate patient’s perspective in consultations; 1. to express who you are as a person and what is important to you, 2. to share your
knowledge about living with the disease and what does or does not work for you, 3. to talk about prognosis and end of life.
Aim: To develop a prototype toolkit for patients with COPD and/or heart failure enabling them to express their perspective to healthcare professionals.
Method: Four co-creation sessions were used to develop a prototype toolkit. Two sessions to define the ideal situation and generate potential solutions and two sessions to test prototype toolkits.
Results: Twenty four unique individuals participated in the co-creation sessions. Ideal situation; all participants are prepared for the consulta- tion, patients are more in the lead during the conversation, patients are known as unique individuals by healthcare professionals. Potential solu- tions; a website with relevant and reliable information and links to exist- ing tools, a personal file to be used in combination with the medical file, a questionnaire about the person and the disease to fill in and return before the consultation. Toolkit tests; easy to use and understand for independent use at home, ability to choose one or more tools based upon individual needs and preferences, physical and digital toolkit to meet different user preferences.
Conclusion: It was possible to develop a prototype toolkit in co-creation with patients, relatives and healtcare professionals. Additional research is needed to test and implement the toolkit.
Abstract number: N-09 Abstract type: Poster
Is Prognosis Discussed with Patients who Have Peripheral Arterial Dis- ease? A Systematic Review
McIntosh S.1, Harding S.2
1North Bristol NHS Trust, Palliative Care, Bristol, United Kingdom,
2North Bristol NHS Trust, Department of Speech and Language, Bristol, United Kingdom
Background: Peripheral arterial disease (PAD) is a common condition estimated to affect 20% of people aged 75 and above. Evidence suggests that 10% of people who have PAD are in their last year of life. We there- fore wanted to determine how often prognosis is discussed with this group of patients.
Aims: To systematically review evidence on whether prognosis is dis- cussed with patients who have PAD, and if so at which stage in their dis- ease trajectory.
Methods: We searched CINAHL, Embase, Medline, PschINFO data- bases until 16th July 2019 using a predetermined search strategy. Two authors independently completed the systematic literature search, reviewed and extracted data from retained texts. Articles were assessed using Joanna Briggs critical appraisal checklist, suitable for the study designs.
Results: 14,989 articles were identified of which 23 abstracts were assessed for eligibility and 2 papers were retained for narrative synthe- sis. The quality of the 2 retained studies was moderate but the study designs as defined by the Clinical Outcomes Group were of low quality:
a case series and a report with a total of 31 patients. There were no documented discussions of prognosis in either of the studies. Palliative care was discussed with 41.9% of patients (n=13) and 87.1% (n=27) of close relatives, but detail regarding the content of the conversations was not provided. The interval between decision to palliate and death ranged from 24 hours to 7 weeks.
Conclusion: Patients with PAD are known to have a reduced life expec- tancy related to the presence of underlying coronary, renal and cerebral artery disease, and 10% are estimated to be in the last year of their life.
To ensure that high quality patient care is delivered, initiating conversa- tions about prognosis is essential. This systematic review identified a lack of evidence to demonstrate that this is currently happening in clini- cal practice. Further research should aim to explore the reasons behind this.
Abstract number: N-10 Abstract type: Poster
Interdisciplinary Collaboration in Nursing Home Teams: A Generic Qualitative Design Using Observations
Kochems K.1, de Graaf E.1, Hesselmann G.2, Blezer E.1, Teunissen S.1
1University Medical Center Utrecht, Center of Expertise Palliative Care Utrecht, General Practice, Julius Center for Health Sciences and Primary Care, Utrecht, Netherlands, 2University Medical Center Utrecht, Cancer Center, Utrecht, Netherlands
Background: Nursing home teams provide care to patients with a life- limiting illness with physical, psychological, social, and spiritual needs.
An interdisciplinary team approach ensures attention for all dimensions to ameliorate patient outcomes, team effectiveness, and team satisfaction.
Aim: To explore interdisciplinary collaboration in nursing home teams.
Methods: A generic qualitative design in a somatic and psychogeriatric ward of a nursing home. Data was collected through participant observa- tions schemes consisting of descriptive, focused, and selective observa- tions of collaborative moments and subsequent validation of the observations in conversation with professionals. The Bronstein model of Interdisciplinary Collaboration was used as a theoretical framework.
Data was analyzed thematically.
Results: Collaborative moments (N=54) were: multidisciplinary consulta- tions, handovers, patient visits, and ad hoc consultations. Observations included 24 unique caregivers of 8 professions. Validating conversations were held with 11 care providers from 9 professions. Four themes emerged: interdisciplinary communication, accessibility of caregivers, distribution of responsibilities, and interests of caregivers and patients.
There was no team identity, caregivers mainly focused on their discipline and there were no multidisciplinary consultations with all caregivers.
Decisions were made by physicians and psychologists and communi- cated with a RN/nurse assistant. No shared decision-making was observed.
Conclusion: Collaboration in nursing home teams has a multidisciplinary character. To improve collaboration we recommend: structural involve- ment of paramedics, planned discussions of common interests, and scheduled consultations for the entire team. Practical guidelines are needed to shift from multidisciplinary towards interdisciplinary collabo- ration and ameliorate the quality of patient care.
Funding: Netherlands Organization for Health Research and Development
Abstract number: N-11 Abstract type: Poster
The Essentials of Communicating about Approaching Death: Develop- ment of a Communication Model
Felber S.J.1, Zambrano S.C.1, Guffi T.1, Brem B.2, Schmitz F.M.2, Schnabel K.2, Guttormsen Schär S.2, Eychmüller S.1
1Inselspital, University Hospital of Berne, University Center for Palliative Care, Berne, Switzerland, 2University of Berne, Institute for Medical Education, Berne, Switzerland
Background: Caring for dying individuals is an integral aspect of care, however training and exposure to conversations with dying patients and their families is almost inexistent during medical and nursing education.
Thus, many health professionals lack the skills to communicate about imminent death causing long-lasting impact to all involved.
Aims: We aimed to develop a communication model for health profes- sionals to engage in conversations about approaching death with patients and families.
Methods: A systematic review of literature as well as experiences of pal- liative care (PC) experts built the model’s basis. The initial model was
exposed to international PC experts for feedback and revised for discus- sion in five focus groups with medical students, physicians, nurses, bereaved relatives, and patient representatives. After thematically ana- lyzing focus group data, we reviewed the model and presented it for confirmation to communication experts.
Results: Reflection on own attitudes and feelings towards death as a pro- fessional and as an individual are central to the model. The model contains three main parts: ‘Before’ includes recognition of the dying phase and preparation of the talk. ‘During’ focuses on setting the stage for communi- cating about dying, exploring the patient’s and family’s view, as well as major concerns and needs regarding the current situation and the dying process, establishing shared goals for the last days of life, defining a care plan for the dying process, and summarizing and exiting the conversation.
‘After’ includes debriefing, self-reflection and self-care.
Conclusion: This is the first model of communication about approaching death developed with key stakeholders. With specific steps and practical advice regarding relational aspects of conversations about dying and death, verbal and nonverbal communication skills and self-care strategies, the model can significantly contribute to medical and nursing education.
Funding: Swiss Cancer Research.
Abstract number: N-12 Abstract type: Poster
Rubbing Minds Together: A Grounded Theory Study to Explain the Pro- cess of Expressing End of Life Care Wishes and Preferences amongst Patients with Advanced Incurable Cancer and their Family Members Oloyede L.1, Preston N.1, Hughes S.1
1Lancaster University/ International Observatory on End of Life Care, Health Research, Lancaster, United Kingdom
Background: Navigating end-of-life communication is fraught with diffi- culty necessitating an enhanced cultural competence. Despite an increasingly multicultural world, little is known about how African patients with terminal illness and their family members engage in end- of-life discussions or express their care preferences.
Aim: To construct a theoretical explanation of the process of expressing end-of-life care wishes and preferences among Nigerian patients diag- nosed with advanced incurable cancer and their family members.
Methods: Using a constructivist grounded theory approach 8 patients with advanced-stage cancer and 6 family caregivers participated in an open-ended interview exploring views and experiences of end-of-life care family communication. Data were collected between August 2017 and September 2018 in a palliative care unit in Northern Nigeria and were analysed using grounded theory techniques.
Results: Rubbing minds together is a theoretical explanation for the dynamics of communication between patients and their family mem- bers within the context of a family-centric society. It represents a nego- tiation in resolving differences of opinion and engaging in conversations about end-of-life care preferences. It comprises a triad of interlinked conceptual categories: controlling to seek relief, collaborating, and enduring. Controlling to seek relief signifies the Nigerian patient’s com- mitment to personal involvement in end-of-life discussions. Collaborating acknowledges the need for family involvement in this process, while enduring represents the individual and collective display of resilience by patients and family members.
Conclusion: Nigerian patients and their family members actively engage in ‘rubbing minds together’ in order to reach consensus on end-of-life care wishes. This theory may have wider implications for the delivery of culturally sensitive end-of-life care and advance care planning in Africa and other collectively focussed societies.
Abstract number: N-13 Abstract type: Poster
Nurses’ Involvement in End-of-Life Discussions with Incurable Cancer Patients and Family Caregivers: An Integrative Review
Ikander T.1, Raunkiær M.2, Hansen O.1, Dieperink K.B.3
1University of Southern Denmark, Department of Oncology, Odense, Denmark, 2University of Southern Denmark, REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Copenhagen, Denmark, 3University of Southern Denmark, Odense, Denmark Background: Nurses are among the healthcare professionals who spend the most time with patients and their families and they thereby have the opportunity to facilitate end-of-life discussions. However, limited knowl- edge exist of nurses’ involvement in end-of-life discussions.
Aim: To review current evidence of nurses’ involvement in end-of-life discussions with incurable cancer patients and their family caregivers.
Methods: We conducted a systematic integrative review in accord- ance with PRISMA guidelines: PROSPERO, registration number:
CRD42020186204. Data sources: CINAHL, Medline, PsycInfo, Embase.
We searched for primary research between 2010-2020. Data analysis was based on Whittemore and Knafls method.
Results: Of 3271 references, we found 15 eligible articles: Qualitative (n=12) and quantitative (n=3). The data analysis resulted in four themes:
1) Nursing roles, 2) Trust building, 3) Nurse competences and 4) Medical issues. Nurses had different roles; the advocating, supporting and reframing roles, and an undefined task e.g. in medical consultations. The profession acted as an intermediary between patients and physicians and helped patients initiate discussions. They also reframed stigma around palliative care. However, they sometimes felt they had an unclear task, not knowing their role in the discussion. Lack of competence could be a barrier to initiate discussions. Furthermore, it was important for the nurses to know the patients and families but they also perceived the families as time consuming.
Conclusion: This study shows that nurses have defined roles, as well as unclear tasks. Nurses have insufficient competencies to engage in the discussions, and interventions that can help nurses develop compe- tences across identified roles are needed. Families could pose barriers to end-of-life discussions in some situations. Future research is required to develop effective ways to ensure that families are involved throughout the cancer trajectory.
Abstract number: N-14 Abstract type: Poster
Effects of a Theory-based ACP Intervention for Nursing Homes: A Clus- ter Randomized Controlled Trial
Pivodic L.1, Wendrich-van Dael A.1, Gilissen J.1, De Buyser S.2, Deliens L.1,2, Gastmans C.3, Vander Stichele R.4, Van den Block L.1
1End-of-Life Care Research Group, Family Medicine & Chronic Care, Brussel, Belgium, 2Ghent University, Department of Public Health and Primary Care, Ghent, Belgium, 3Katholieke Universiteit Leuven, Centre for Biomedical Ethics and Law, Leuven, Belgium, 4Ghent University, Department of Pharmacology, Ghent, Belgium
Background: The uptake of advance care planning (ACP) in routine nurs- ing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+
intervention program.
Aims: To evaluate the effects of ACP+ on the knowledge and self-effi- cacy (confidence in own skills) concerning ACP of nursing home care staff.
Methods: A cluster randomized controlled trial, conducted between February 2018 and January 2019 (NCT03521206, clinicaltrials.gov) in nursing homes in Flanders (Belgium). ACP+ is a multi-component inter- vention aimed at training and supporting nursing home staff and man- agement in implementing ACP in routine nursing home practice through a train-the-trainer approach over eight months. Fourteen nursing homes were randomized using a matched-pairing strategy, seven received ACP+, seven followed usual practice. We conducted intention-to-treat analyses using linear mixed models.