End-of-life treatment preference discussions between older people and their physician before and during the COVID-19 pandemic: cross sectional and longitudinal analyses from the Longitudinal Aging Study Amsterdam.

BACKGROUND: COVID-19 could lead to hospitalisation and ICU admission, especially in older adults. Therefore, during the pandemic, it became more important to discuss wishes and preferences, such as older peoples' desire for intensive treatment in a hospital in acute situations, or not. This study explores what percentage of Dutch older people aged 75 and over discussed Advance Care Planning (ACP) topics with a physician during the first months of the COVID-19 pandemic and whether this was different in these people before the COVID-19 pandemic. METHODS: Data of two ancillary data collections of the Longitudinal Aging Study Amsterdam were used: the LASA 75 PLUS study and the LASA COVID-19 study. The latter provided cross sectional data (during COVID-19; n = 428) and longitudinal data came from participants in both studies (before and during COVID-19; n = 219). RESULTS: Most older adults had thought about ACP topics during COVID-19 (76,4%), and a minority had also discussed ACP topics with a physician (20.3%). Thinking about ACP topics increased during COVID-19 compared to before COVID-19 in a sample with measurements on both timeframes (82,5% vs 68,0%). Not thinking about ACP topics decreased in the first months of the COVID-pandemic compared to before COVID-19 for all ACP topics together (68.0% vs 82.2%) and each topic separately (hospital 42.0% vs 63.9%; nursing home 36.5% vs 53.3%; treatment options 47.0% vs 62.1%; resuscitation 53.0% vs 70.7%). CONCLUSIONS: Older people do think about ACP topics, which is an important first step in ACP, and this has increased during COVID-19. However, discussing ACP topics with a physician is still not that common. General practitioners could therefore take the initiative in broaching the subject of ACP. This can for instance be done by organizing information meetings.

Awareness and Actual Knowledge of Palliative Care Among Older People: A Dutch National Survey.

CONTEXT: Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge of palliative care. OBJECTIVES: To determine awareness and actual knowledge of palliative care and explore factors that contribute to knowledge of palliative care among older people. METHODS: A cross-sectional study in a representative sample of 1242 Dutch people (≥ 65 years; response 93.2%) on whether they had heard of palliative care and knowledge statements about palliative care. RESULTS: The majority had heard of the term palliative care (90.1%), and 47.1% reported to know (quite) exactly what it means. Most knew palliative care is not only for people with cancer (73.9%) and is not only provided in hospice facilities (60.6%). A minority knew palliative care can be provided alongside life-prolonging treatment (29.8%) and is not only for people who have a few weeks left to live (23.5%). Experience with palliative care through family, friends and/or acquaintances (range ORs: 1.35-3.39 for the four statements), higher education (ORs: 2.09-4.81), being female (ORs: 1.56-1.91), and higher income (OR: 1.93) were positively associated with one or more statements, while increasing age (ORs: 0.52-0.66) was negatively associated. CONCLUSION: Knowledge of palliative care is limited, stressing the need for population-wide interventions, including information meetings. Attention should be paid to timely attention for palliative care needs. This might stimulate ACP and raise public knowledge of (im) possibilities of palliative care.

The patient's relationship with the General Practitioner before and after Advance Care Planning: pre/post-implementation study.

BACKGROUND: General Practitioners (GPs) are central in the care of Dutch older people and in a good position to have Advance Care Planning (ACP) conversations. Interview studies reveal that the doctor-patient relationship is important when initiating ACP conversations and can also be influenced by ACP conversations. We aimed to examine the association between having an ACP conversation and the patient feeling the GP knows him or her and the patient trusting the GP and vice versa. METHODS: Implementation of ACP in primary care was evaluated in a pre-and post design. Questionnaires before implementation of ACP and 14 months later were sent to patients aged 75 years or older within 10 GP-practices and 2 care homes. Multivariable logistic regression was used to model the relationship between ACP conversations during implementation and the patient-GP relationship before implementation. Odds ratios were adjusted for potential confounders. Generalized ordered logistic regression was used to model the relationship between the changes in patient-GP relationship before and after implementation and ACP conversations during implementation. RESULTS: Four hundred fifty-eight patients filled out the pre- and post-test questionnaire. There was no association between the GP knowing the patient and trust in the pre-test and having an ACP conversation during the implementation. For people who had had an ACP conversation at the end of the implementation period their trust remained more often the same or was higher after implementation (trust to provide good care OR 2.93; trust to follow their wishes OR 2.59), compared to patients who did not have an ACP conversation. A reduction in trust was less likely to happen to patients who had an ACP conversation compared to patients who did not have an ACP conversation. CONCLUSIONS: Although we have not found evidence for trust as a prerequisite for ACP conversations, this paper shows that ACP conversations can be beneficial for the doctor-patient relationship.

Diversity in Advance Care Planning and End-Of-Life Conversations: Discourses of Healthcare Professionals and Researchers.

To meet the end-of-life needs of all patients, ongoing conversations about values and preferences regarding end-of-life care are essential. Aspects of social identity are associated with disparities in end-of-life care outcomes. Therefore, accounting for patient diversity in advance care planning and end-of-life conversations is important for equitable end-of-life practices. We conducted 16 semi-structured interviews to explore how Dutch healthcare professionals and researchers conceptualized diversity in advance care planning and end-of-life conversations and how they envision diversity-responsive end-of-life care and research. Using thematic discourse analysis, we identified five 'diversity discourses': the categorical discourse; the diversity as a determinant discourse; the diversity in norms and values discourse; the everyone is unique discourse, and the anti-essentialist discourse. These discourses may have distinct implications for diversity-responsive end-of-life conversations, care and research. Awareness and reflection on these discourses may contribute to more inclusive end-of-life practices.

Information meetings on end-of-life care for older people by the general practitioner to stimulate advance care planning: a pre-post evaluation study.

BACKGROUND: To increase knowledge about options people have concerning end-of-life-care issues, General Practitioners (GPs) can organise meetings to inform their older patients. We evaluated these meetings, using the following research questions: How did the attendees experience the information meeting? Was there a rise in Advance Care Planning (ACP) behaviour after the information meeting? Was there a change in trust people have that physicians will provide good care at the end of life and that they will follow their end-of-life wishes after the information meetings? METHODS: Four GPs invited all patients of 75 years and older registered in their GP practices to the meeting via a written letter. Four meetings of 2 h took place in 2016. Meetings started with a presentation on end-of-life topics and ACP by the GP followed by time for questions. A pre-post evaluation study was done using written questionnaires distributed and filled in at the start of the meeting (T0) at the end of the meeting (T1) and 6 months after the meeting (T2). RESULTS: In total 225 older people attended a meeting of which 154 (68%) filled in the questionnaire at T0 and 145 (64%) filled in the questionnaire at T1. After six months, 90 of the 121 people who approved of being sent another questionnaire at T2, returned it (40%). The average age of the respondents was 80 years (T0). The meetings were evaluated positively by the attendees (T1). ACP issues (appointing a proxy, resuscitation, hospitalisation, euthanasia, treatment preferences under certain circumstances, preferred place of care and nursing home admittance) were discussed with a physician, a relative or both more often in the 6 months after having attended the meeting (T2), compared to before (T0). Compared to before the meeting (T0), trust in the GP providing good end-of-life care and following end-of-life wishes was higher immediately after the meeting (T1), but not after 6 months (T2). CONCLUSION: Information meetings on end-of-life care by GPs have a positive influence on the occurrence of ACP, both with the physician and others. Although, this method especially reaches the older people that are already interested in the subject, this seems a relatively easy way to stimulate ACP.

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.

Continuity of GP care after the last hospitalization for patients who died from cancer, chronic obstructive pulmonary disease or heart failure: a retrospective cohort study using administrative data.

BACKGROUND: Discharge from hospital to home can be a stressful experience for patients and carers. Contact with the GP is important to ensure continuity of care. OBJECTIVES: To investigate timing of contact with the GP and locum after the last hospitalization in the last year of life and to investigate patient and care characteristics related to contact with the GP within 2 days after discharge. METHODS: Health insurance data were combined with data from Statistics Netherlands on patients who mainly received care at home in the last 4 months of life. Patients who died from cancer (n = 3014), chronic obstructive pulmonary disease (COPD, n = 195) or heart failure (n = 171) were compared. RESULTS: First contact after hospital discharge was within 2 days for 51.7% of patients and within a week for 77.8% of patients. Patients who died from COPD or heart failure had contact less often than patients with cancer. Characteristics related to having contact within 2 days after discharge were older age, cause of death cancer, home death, timing of last hospitalization closer to death and contact with a locum in the week after discharge. CONCLUSION: Results may indicate that the GP is likely to visit patients with more care needs sooner. This would be in accordance with the finding that contact with the GP was more likely after a hospitalization closer to death and that contact within 2 days was related to contact with a locum within a week after discharge. Proactive care is necessary. This is a joint responsibility of GPs and medical specialists.

Appraisal of cooperation with a palliative care case manager by general practitioners and community nurses: a cross-sectional questionnaire study.

AIMS: To investigate how general practitioners and community nurses value the support that they receive from a nurse case manager with expertise in palliative care, whether they think the case manager is helpful in realizing appropriate care and what characteristics of the patient and case management are associated with this view. BACKGROUND: For sustainable palliative care in an ageing society, basic palliative care is provided by generalists and specialist palliative care is reserved for complex situations. Acceptance of and cooperation with specialist palliative care providers by the general practitioner and community nurse is pivotal. DESIGN: Cross-sectional questionnaire study. METHODS: Questionnaire data from 168 general practitioners and 125 community nurses were analysed using chi-square tests, univariate and multivariate logistic regression. Data were gathered between March 2011-December 2013. RESULTS: Of general practitioners, 46% rated the case manager as helpful in realizing care that is appropriate for the patient; for community nurses this was 49%. The case manager did not hinder the process of care and had added value for patients, according to the general practitioners and community nurses. The tasks of the case manager were associated with whether or not the case manager was helpful in realizing appropriate care, whereas patient characteristics and the number of contacts with the case manager were not. CONCLUSION: General practitioners and community nurses are moderately positive about the support from the case manager. To improve cooperation further, case managers should invest in contact with general practitioners and community nurses.

Involvement of a Case Manager in Palliative Care Reduces Hospitalisations at the End of Life in Cancer Patients; A Mortality Follow-Back Study in Primary Care.

BACKGROUND: Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse. OBJECTIVES: To compare cancer patients with and without additional support from a case manager on: 1) the patients' general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes. METHODS: This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013. RESULTS: The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care. CONCLUSIONS: Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is 'only' advisory and he or she does not provide hands-on care or prescribe medication.

Palliative care case managers in primary care: a descriptive study of referrals in relation to treatment aims.

BACKGROUND: Three important elements of the World Health Organization (WHO) definition of palliative care are: 1) it includes patients who may have cure or life prolongation as treatment aims besides palliative care; 2) it is not exclusively for cancer patients; and 3) it includes attention to the medical, psychological, social, and spiritual needs of the patients and their families. Case managers (nurses with expertise in palliative care) may assist generalist primary care providers in delivery of good palliative care. OBJECTIVES: This study investigates the referral of patients to case managers in primary care with regard to the three elements mentioned: diagnosis, treatment aims, and needs as reflected in reasons given for referral. METHODS: In this cross-sectional survey in primary care among case managers and referrers to case management, case managers completed questionnaires for 687 patients; referrers completed 448 (65%). RESULTS: Most patients referred have a combination of treatment aims (69%). Life expectancy and functional status of patients are lower for those with a treatment aim of palliation. Almost all (96%) of those referred are cancer patients. A need for psychosocial support is frequently given as a reason for referral (66%) regardless of treatment aim. CONCLUSIONS: Referrals to case managers reflect two of three elements of the WHO definition. Mainly, patients are referred for support complementary to medical care, and relatively early in their disease trajectory. However, most of those referred are cancer patients. Thus, to fully reflect the definition, broadening the scope to reach other patient groups is important.

PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire.

BACKGROUND: PaTz (an acronym for 'PAlliatieve Thuis Zorg'; palliative care at home) is an intervention to improve palliative care provision and strengthen the generalist knowledge of palliative care. In PaTz general practitioners and district nurses meet on a regular basis to identify patients with palliative care needs and to discuss care for these patients. This study explores experiences with regard to collaboration between general practitioners and district nurses, and perceived benefits of and barriers for implementation of PaTz. METHODS: This study is conducted within the primary care setting. Participants were 24 general practitioners who filled in a questionnaire, and seven general practitioners, five district nurses and two palliative care consultants who attended one of two focus groups. RESULTS: PaTz led to improved collaboration. Participants felt informational and emotional support from other PaTz participants. Also they felt that continuity of care was enhanced by PaTz. Practical recommendations for implementation were: meetings every 6 to 8 weeks, regular attendance from both general practitioners and district nurses, presence of a palliative care consultant, and a strong chairman. CONCLUSIONS: PaTz is successful in enhancing collaboration in primary palliative care and easy to implement. Participants felt it improved continuity of care and knowledge on palliative care. Further research is needed to investigate whether patient and carer outcomes improve.

Palliative care case management in primary care settings: a nationwide survey.

BACKGROUND: In case management an individual or small team is responsible for navigating the patient through complex care. Characteristics of case management within and throughout different target groups and settings vary widely. Case management is relatively new in palliative care. Insight into the content of care and organisational characteristics of case management in palliative care is needed. OBJECTIVES: To investigate how many case management initiatives for palliative care there are in the Netherlands for patients living at home; to describe the characteristics of these initiatives with regard to content and organisation of care. SETTING: Primary care. DESIGN AND PARTICIPANTS: A nationwide survey of all 50 coordinators of networks in palliative care in the Netherlands was conducted. Additional respondents were found through snowball sampling. We looked at 33 possible initiatives using interviews (n=33) and questionnaires (n=30). RESULTS: We identified 20 initiatives for case management. All stated that case management is supplemental to other care. In all initiatives the case managers are registered nurses and most possess higher vocational education and/or further training. All initiatives seek to identify the multidimensional care needs of the patients and the relatives and friends who care for them. Almost all provide information and support and refer patients who need care. Differences are found between the organisations offering the case management, their target groups, the names of the initiatives and whether direct patient care is provided by the case manager. CONCLUSIONS: In the Netherlands, case management in palliative care is new. Several models of delivery were identified. Research is needed to gain insight into the best way to deliver case management. By describing characteristics of case management in palliative care, an important first step is made in identifying effective elements of case management.

What is case management in palliative care? An expert panel study.

BACKGROUND: Case management is a heterogeneous concept of care that consists of assessment, planning, implementing, coordinating, monitoring, and evaluating the options and services required to meet the client's health and service needs. This paper describes the result of an expert panel procedure to gain insight into the aims and characteristics of case management in palliative care in the Netherlands. METHODS: A modified version of the RAND®/University of California at Los Angeles (UCLA) appropriateness method was used to formulate and rate a list of aims and characteristics of case management in palliative care. A total of 76 health care professionals, researchers and policy makers were invited to join the expert panel, of which 61% participated in at least one round. RESULTS: Nine out of ten aims of case management were met with agreement. The most important areas of disagreement with regard to characteristics of case management were hands-on nursing care by the case manager, target group of case management, performance of other tasks besides case management and accessibility of the case manager. CONCLUSIONS: Although aims are agreed upon, case management in palliative care shows a high level of variability in implementation choices. Case management should aim at maintaining continuity of care to ensure that patients and those close to them experience care as personalised, coherent and consistent.

[Engaging patients with serious mental illness in care services by Critical Time Intervention]. / Zorgmijdende patiënten in de psychiatrie. Critical time intervention' brengt ze in de zorgverlening.

Patients with serious mental illness who are difficult to engage in services often face multiple complex problems, like homelessness, debts, and poor hygiene and social skills. Critical Time Intervention (CTI) is a time-limited, manual-guided case management approach intended to enhance continuity of care for mentally ill patients. We present two patients who received intensive outpatient CTI care. A 42-year-old woman diagnosed with depression and addiction to alcohol and medication and a 38-year-old man diagnosed with autism were offered practical and emotional support while they became linked to a long term support system. CTI offers pro-active case management where the patient lives, taking into account the patient's strengths and informal support system. CTI is especially suited for patients relatively new to psychiatric care, who would not engage in services without support.