Characteristics of timely integration of palliative care into oncology hospital care for patients with incurable cancer: results of a Delphi Study.

PURPOSE: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. METHODS: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. RESULTS: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%). CONCLUSION: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death.

Open communication between patients and relatives about illness & death in advanced cancer-results of the eQuiPe Study.

OBJECTIVE: To assess the degree of openness of communication about illness and death between patients with advanced cancer and their relatives during the last three months of the patient's life, and its association with relatives' characteristics and bereavement distress. METHODS: We used data from bereaved relatives of patients with advanced cancer from the prospective, longitudinal, multicenter, observational eQuipe study. Univariate and multivariable linear regression analyses were used to assess the association between the degree of openness of communication (measured using the validated Caregivers' Communication with patients about Illness and Death scale), the a priori defined characteristics of the relatives, and the degree of bereavement distress (measured using the Impact of Event Scale). RESULTS: A total of 160 bereaved relatives were included in the analysis. The average degree of open communication about illness and death between patients with advanced cancer and their relatives was 3.86 on a scale of 1 to 5 (SE=0.08). A higher degree of open communication was associated with a lower degree of bereavement distress (p=0.003). No associations were found between the degree of open communication and the relatives' age (p=0.745), gender (p=0.196), level of education (p>0.773), (religious) worldview (p=0.435), type of relationship with the patient (p>0.548), or level of emotional functioning before the patient's death (p=0.075). CONCLUSIONS: Open communication about illness and death between patients and relatives seems to be important, as it is associated with a lower degree of bereavement distress. Healthcare professionals can play an important role in encouraging the dialogue. However, it is important to keep in mind that some people not feel comfortable talking about illness and death.

Effects of prognostic communication strategies on emotions, coping, and appreciation of consultations: An experimental study in advanced cancer.

OBJECTIVES: We aimed to investigate effects of prognostic communication strategies on emotions, coping, and appreciation of consultations in advanced cancer. METHODS: For this experimental study, we created 8 videos of a scripted oncological consultation, only varying in prognostic communication strategies. Disease-naive individuals (n = 1036) completed surveys before and after watching 1 video, while imagining being the depicted cancer patient. We investigated effects of the type of disclosure (prognostic disclosure vs. communication of unpredictability vs. non-disclosure) and content of disclosure (standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on emotions, coping, and appreciation of consultations. Moderating effects of individual characteristics were tested. RESULTS: Participants generally reported more satisfaction (p < .001) after prognostic disclosure versus communication of unpredictability and less uncertainty (p = .042), more satisfaction (p = .005), and more desirability (p = .016) regarding prognostic information after numerical versus word-based estimates. Effects of different survival scenarios were absent. Prognostic communication strategies lacked effects on emotions and coping. Significant moderators included prognostic information preference and uncertainty tolerance. SIGNIFICANCE OF RESULTS: In an experimental setting, prognostic disclosure does not cause more negative emotions than non-disclosure and numerical estimates are more strongly appreciated than words. Oncologists' worries about harming patients should not preclude disclosing (precise) prognostic information, yet sensitivity to individual preferences and characteristics remains pivotal.

Outcomes and Feasibility of an Occupational Care Programme (TERRA) to Support Work Ability of Rare and Advanced Cancer Patients: A Report of 7 Cases.

INTRODUCTION: Advancements in the field of oncology are allowing patients to live longer, with enhanced quality of life (QoL). Accordingly, more patients with cancer are expressing the desire to return to work (RTW). Previous research has indicated that patients with a rare or advanced cancer can experience unique problems in the RTW process. METHODS: This pilot study evaluated the outcomes and feasibility of the occupational care programme TERRA (i.e., recalibraTe lifE and woRk with and afteR cAncer) for patients with a rare or advanced cancer. Four rare cancer patients and three advanced cancer patients completed TERRA; a supportive occupational care programme consisting of five online group sessions over a two-month period. Pre- and post-intervention outcomes were collected using validated self-report questionnaires. The primary outcome was work ability. Secondary outcomes included QoL, anxiety and depression, fatigue, unmet needs, self-efficacy, readiness for RTW, work intention, work involvement, and work-life conflict. Feasibility was assessed using the RE-AIM model. RESULTS: Changes in work ability scores were inconsistent across participants. Well-being outcomes generally improved following the intervention. Feasibility was evaluated positively by both participants and trainers. DISCUSSION/CONCLUSION: A multidisciplinary approach may further improve outcomes of occupational interventions supporting rare and advanced cancer patients. An effectiveness study to evaluate the outcomes and feasibility of the programme is deemed necessary.

Nursing assistants' perceptions and experiences with the emotional impact of providing palliative care: A qualitative interview study in nursing homes.

AIM: To gain insight into the perceived emotional impact of providing palliative care among nursing assistants in Dutch nursing homes, their strategies in coping with this impact and associated needs. DESIGN: Exploratory qualitative study. METHODS: In 2022, 17 semistructured interviews with nursing assistants working in Dutch nursing homes were conducted. Participants were recruited via personal networks and social media. Interviews were open-coded by three independent researchers following the thematic analysis approach. RESULTS: Three themes emerged regarding the elements that contribute to the emotional impact of providing palliative care in nursing homes: impactful situations (e.g. witnessing suffering and sudden deaths), interactions (e.g. close relationship and receiving gratitude) and reflection on provided care (e.g. feeling fulfilment or feeling inadequate in caring). Nursing assistants used different strategies to cope, including emotional processing activities, their attitude towards death and work and gaining experience. Participants experienced a need for more education in palliative care and organized peer group meetings. CONCLUSION: Elements that play a role in how the emotional impact of providing palliative care is perceived by nursing assistants can have a positive or negative impact. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nursing assistants should be better supported in coping with the emotional impact of providing palliative care. IMPACT: In nursing homes, nursing assistants are most involved in providing daily care to residents and have a signalling role in recognizing the deteriorating conditions of residents. Despite their prominent role, little is known about the emotional impact of providing palliative care among these professionals. This study shows that although nursing assistants already undertake various activities to reduce the emotional impact, employers should be aware of the unmet needs in this area and the responsibility they have in this regard. REPORTING METHOD: The QOREQ checklist was used for reporting. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Clinicians' perceptions of the emotional impact of providing palliative care: A qualitative interview study.

OBJECTIVES: Many aspects of palliative care, such as managing (complicated) symptoms, conducting goals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians. Previous research on the emotional impact of providing palliative care was mainly done in specialist settings. However, the majority of palliative care is provided by clinicians who are not specialized in palliative care, and can be supported by palliative care specialists only when needed. Therefore, this study aimed to gain insight into the emotional impact of providing palliative care on clinicians, both palliative care generalists and specialists. METHODS: A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) working in hospitals, home care, or nursing homes in the Netherlands was conducted. Between February and June 2019, 13 palliative care generalists and 8 specialists were interviewed. Interviews were thematically analyzed by two researchers. RESULTS: All clinicians considered the emotional impact of providing palliative care to be substantial and experienced both positive and negative aspects of providing palliative care. Several aspects of providing palliative care can support or undermine emotional stability. These so-called facilitators and barriers, such as practicing self-care and complexity of palliative care, were found at three different levels: individual, team, and organization. SIGNIFICANCE OF RESULTS: Although clinicians experience providing palliative care as meaningful and valuable, the emotional impact is considerable. Negative and positive aspects often co-exist. Further insight into the dynamics and magnitude of the emotional impact of providing palliative care is needed in order to create a healthy working environment and develop adequate interventions.

Experiences and perspectives of patients with advanced cancer regarding work resumption and work retention: a qualitative interview study.

PURPOSE: Being able to work improves the quality of life of patients with cancer. Much is known about the return to work process of cancer survivors. Yet, studies focusing on the experiences of patients with advanced cancer who want to return to work or stay employed are scarce. Therefore, we aimed to explore the perceptions of patients with advanced cancer regarding work resumption and work retention and the barriers and facilitators they may experience. METHODS: Semi-structured interviews were conducted. Patients were included if they: (1) were diagnosed with advanced cancer, (2) worked in paid employment at time of diagnosis, and (3) were currently back in paid employment or had the intention to return to paid employment. Participants were recruited through clinicians and patient organizations. Interviews were transcribed and thematically analysed using ATLAS.ti. RESULTS: Fifteen patients (87% female, mean age 52 (SD 4; range 41-64)) were individually interviewed. Four main themes emerged from the data: (1) holding on to normalcy, (2) high understanding and divergent expectations, (3) social discomfort calls for patient-initiated alignment, and (4) laws and regulations require patient empowerment. CONCLUSION: Paid employment can contribute to the quality of life of patients with advanced cancer. The findings of this study might correct erroneous preconceptions about the work ability and work intention of patients with advanced cancer. Tools already developed for employers to support reintegration of patients with cancer should be further explored and translated to patients with advanced cancer.

Work resumption and retention in patients with advanced cancer: Experiences and perspectives of general and occupational health care professionals.

OBJECTIVE: The objectives of this study were to explore the experiences and perspectives of general and occupational health care professionals regarding work resumption and work retention of patients with advanced cancer, and to identify barriers and facilitators these professionals may encounter. METHODS: A qualitative design was applied, and individual semistructured interviews were conducted. General and occupational health care professionals were eligible to participate if they were involved in the work participation guidance of patients with advanced cancer, and were recruited through the network of the research team. Interview data were transcribed verbatim and analysed thematically via ATLAS.ti 9. RESULTS: Interviewees (N = 17) had various occupational backgrounds, for example, occupational physician, reintegration consultant, and general practitioner. Four main themes emerged from the data: (1) Assumptions and hesitations, (2) Patient initiates stakeholder communication, (3) Role dispersion: who is in charge of what? and (4) Experience with legislation creates opportunities. CONCLUSION: Whereas most interviewees had positive experiences with, and/or optimistic expectations of, the work resumption and work retention of patients with advanced cancer, several barriers to the work participation guidance of these patients were identified. Suggestions for improvement include creating widespread awareness of the possibility of work participation of patients with advanced cancer and developing reintegration guidelines for advanced cancer.

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study.

PURPOSE: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden. METHODS: This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden. RESULTS: Most of the 746 relatives were the patient's partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR = .87) and were less resilient (OR = .76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR = .96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR = .39). CONCLUSION: A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation. TRIAL REGISTRATION NUMBER: NTR6584 (date of registration: 30 June 2017).

Prevalence of burnout in healthcare professionals providing palliative care and the effect of interventions to reduce symptoms: A systematic literature review.

BACKGROUND: In recent years there has been increasing attention for the prevalence and prevention of burnout among healthcare professionals. There is unclarity about prevalence of burnout in healthcare professionals providing palliative care and little is known about effective interventions in this area. AIM: To investigate the prevalence of (symptoms of) burnout in healthcare professionals providing palliative care and what interventions may reduce symptoms of burnout in this population. DESIGN: A systematic literature review based on criteria of the PRISMA statement was performed on prevalence of burnout in healthcare professionals providing palliative care and interventions aimed at preventing burnout. DATA SOURCES: PubMed, PsycInfo and Cinahl were searched for studies published from 2008 to 2020. Quality of the studies was assessed using the method of Hawkers for systematically reviewing research. RESULTS: In total 59 studies were included. Burnout among healthcare professionals providing palliative care ranged from 3% to 66%. No major differences in prevalence were found between nurses and physicians. Healthcare professionals providing palliative care in general settings experience more symptoms of burnout than those in specialised palliative care settings. Ten studies reported on the effects of interventions aimed at preventing burnout. Reduction of one or more symptoms of burnout after the intervention was reported in six studies which were aimed at learning meditation, improving communication skills, peer-coaching and art-therapy based supervision. CONCLUSION: The range of burnout among healthcare professionals providing palliative care varies widely. Interventions based on meditation, communication training, peer-coaching and art-therapy based supervision have positive effects but long-term outcomes are not known yet.

Experiences and needs of patients with incurable cancer regarding advance care planning: results from a national cross-sectional survey.

INTRODUCTION: Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations. METHODS: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared. RESULTS: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1-10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1-10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. CONCLUSION: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services.

Humour and laughing in patients with prolonged incurable cancer: an ethnographic study in a comprehensive cancer centre.

PURPOSE: Most people are familiar with the expression 'laughter is the best medicine'. By enhancing cognitive flexibility and strengthening relationships, laughter can be considered a holistic care-approach. Yet, in medical oncology, especially the palliative phase, using humour can be considered inappropriate or taboo. We aimed to explore the acceptability and functions of humour and laughter in patients with prolonged incurable cancer. METHODS: This study was performed in a Dutch Comprehensive Cancer Centre. We included four short conversations with patients, eighteen in-depth patient-interviews and eleven observational fieldnotes in which humour was a major topic of the conversation. We further administered an online questionnaire to thirty-three oncology clinicians about their experiences with humour. Qualitative data were thematically analysed. We specifically distinguished between humour and laughter. RESULTS: Nearly all specialists reported using humour (97%), and all reported sometimes laughing during consultations; 83% experienced a positive effect of laughter. These results were in line with patients' experiences: Patients noted that humour always stayed alive despite medical difficulties. Apart from this human aspect, patients also used humour to broach difficult topics and downplay challenges. Patients and specialists acknowledged that using humour is sometimes inappropriate, partly because they did not always share the same humour. Laughter, in contrast, was regarded as 'lighter' than humour, and could, accordingly, more easily be implemented. Specialists cautioned against patients using laughter to avoid broaching difficult topics. CONCLUSION: Many conversations were full of laughter. Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. If applied appropriately, adding shared laughter may help optimize shared decision-making.

Regional variation in hospital care at the end-of-life of Dutch patients with lung cancer exists and is not correlated with primary and long-term care.

OBJECTIVE: To examine the regional variation in hospital care utilization in the last 6 months of life of Dutch patients with lung cancer and to test whether higher degrees of hospital utilization coincide with less general practitioner (GP) and long-term care use. DESIGN: Cross-sectional claims data study. SETTING: The Netherlands. PARTICIPANTS: Patients deceased in 2013-2015 with lung cancer (N = 25 553). MAIN OUTCOME MEASURES: We calculated regional medical practice variation scores, adjusted for age, gender and socioeconomic status, for radiotherapy, chemotherapy, CT-scans, emergency room contacts and hospital admission days during the last 6 months of life; Spearman Rank correlation coefficients measured the association between the adjusted regional medical practice variation scores for hospital admissions and ER contacts and GP and long-term care utilization. RESULTS: The utilization of hospital services in high-using regions is 2.3-3.6 times higher than in low-using regions. The variation was highest in 2015 and lowest in 2013. For all 3 years, hospital care was not significantly correlated with out-of-hospital care at a regional level. CONCLUSIONS: Hospital care utilization during the last 6 months of life of patients with lung cancer shows regional medical practice variation over the course of multiple years and seems to increase. Higher healthcare utilization in hospitals does not seem to be associated with less intensive GP and long-term care. In-depth research is needed to explore the causes of the variation and its relation to quality of care provided at the level of daily practice.

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol.

BACKGROUND: Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care. METHODS: A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients' death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors. DISCUSSION: This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care. TRIAL REGISTRATION: Trial NL6408 ( NTR6584 ). Registered in Netherlands Trial Register on June 30, 2017.

The Intensity of Hospital Care Utilization by Dutch Patients With Lung or Colorectal Cancer in their Final Months of Life.

Understanding the overuse and underuse of health-care services in the end-of-life (EoL) phase for patients with lung cancer (LC) and colorectal cancer (CRC) is important, but knowledge is limited. To help identify inappropriate care, we present the health-care utilization profiles for hospital care at the EoL of patients with LC (N = 25 553) and CRC (N = 14 911) in the Netherlands between 2013 and 2015. An administrative database containing all in-hospital health-care activities was analyzed to investigate the association between the number of days patients spent in the emergency department (ED) or intensive care unit (ICU) and their exposure to chemotherapy or radiotherapy. Fewer patients received hospital care as death neared, but their intensity of care increased. In the last month of life, the average numbers of hospital bed days, ICU days, and ER contacts were 9.0, 5.5, and 1.2 for patients with CRC, and 8.9, 6.2 and 1.2 for patients with LC in 2015. On the other hand, the occurrence of palliative consultations ranged from 1% to 4%. Patients receiving chemotherapy 6 months before death spent fewer days in ICU than those who did not receive this treatment (odds ratios: CRC = 0.6 [95% confidence interval: 0.4-0.8] and LC = 0.7 [0.5-0.9]), while those receiving chemotherapy 1 month before death had more ED visits (odds ratios: CRC = 17.2 [11.8-25.0] and LC = 15.8 [12.0-20.9]). Our results showed that patients who were still receiving hospital care when death was near had a high intensity of care, yet palliative consultations were low. Receiving chemotherapy or radiotherapy in the final month of life was significantly associated with more ED and ICU contacts in patients with LC.

Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study.

PURPOSE: Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers. METHODS: Seven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach. RESULTS: Social consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations. CONCLUSIONS: Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.

How do treatment aims in the last phase of life relate to hospitalizations and hospital mortality? A mortality follow-back study of Dutch patients with five types of cancer.

PURPOSE: The purpose of this study is to describe and compare the relation between treatment aims, hospitalizations, and hospital mortality for Dutch patients who died from lung, colorectal, breast, prostate, or pancreatic cancer. METHODS: A mortality follow-back study was conducted within a sentinel network of Dutch general practitioners (GPs), who recorded the end-of-life care of 691 patients who died from one of the abovementioned cancer types between 2009 and 2015. Differences in care by type of cancer were analyzed using multilevel analyses to control for clustering within general practices. RESULTS: Among all cancer types, patients with prostate cancer most often and patients with pancreatic cancer least often had a palliative treatment aim a month before death (95% resp. 84%). Prostate cancer patients were also least often admitted to hospital in the last month of life (18.5%) and least often died there (3.1%), whereas lung cancer patients were at the other end of the spectrum with 41.8% of them being admitted to hospital and 22.6% dying in hospital. Having a palliative treatment aim and being older were significantly associated with less hospital admissions, and having a palliative treatment aim, having prostate cancer, and dying in a more recent year were significantly associated with less hospital deaths. CONCLUSION: There is large variation between patients with different cancer types with regard to treatment aims, hospital admissions, and hospital deaths. The results highlight the need for early initiation of GP palliative care to support patients from all cancer types to stay at the place they prefer as long as possible.

Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study.

BACKGROUND: Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. OBJECTIVE: To examine whether and how the steps of SDM can be recognized in decision making about second- and third-line chemotherapy. METHODS: Fourteen advanced cancer patients were followed over time using face-to-face in-depth interviews and observations of the patients' out-clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. RESULTS: Patients were satisfied with the decision-making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. CONCLUSION: To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.

Mechanisms that contribute to the tendency to continue chemotherapy in patients with advanced cancer. Qualitative observations in the clinical setting.

PURPOSE: The study aims to describe mechanisms that contribute to the tendency towards continuing chemotherapy in patients with advanced cancer. METHODS: The study conducted qualitative observations of outpatient clinic visits of 28 patients with advanced cancer (glioblastoma and metastatic colorectal cancer). RESULTS: We uncovered four mechanisms in daily oncology practice that can contribute to the tendency towards continuing chemotherapy in patients with advanced cancer: (1) "presenting the full therapy sets the standard"--patients seemed to base their justification for continuing chemotherapy on the "standard" therapy with the maximum number of cycles as presented by the physician at the start of the treatment; (2) "focus on standard evaluation moments hampers evaluation of care goals"--whether or not to continue the treatment was mostly only considered at standard evaluation moments; (3) "opening question guides towards focus on symptoms"--most patients gave an update of their physical symptoms in answer to the opening question of "How are you doing?" Physicians consequently discussed how to deal with this at length, which often took up most of the visit; (4) "treatment is perceived as the only option"--patients mostly wanted to continue with chemotherapy because they felt that they had to try every available option the physician offered. Physicians also often seemed to focus on treatment as the only option. CONCLUSION: Discussing care goals more regularly with the patient, facilitated for instance by implementing early palliative care, might help counter the mechanisms and enable a more well-considered decision. This could be either stopping or continuing chemotherapy.

Perspectives of Medical Specialists on Sharing Decisions in Cancer Care: A Qualitative Study Concerning Chemotherapy Decisions With Patients With Recurrent Glioblastoma.

BACKGROUND: In cancer care, difficult decisions concerning advanced treatment need to be made, weighing possible life prolongation against harmful side effects. Treatment is frequently started, showing the need to explore how decisions are made. Little is known about the perspectives of physicians on sharing decision making with patients. This qualitative study aimed to describe the perspectives of medical specialists on the decision-making process with patients with glioblastoma concerning starting new treatment. METHODS: Qualitative interviews were held with medical specialists. One focus group was organized with medical professionals. Their opinions about elements of shared decision making and the applicability in the context of patients with glioblastoma were assessed. The topic list for the focus group was based on the analysis of the interviews. Qualitative analysis of the transcripts was performed by three researchers independently. RESULTS: Medical specialists considered shared decision making to be important; however, they did not adhere to its elements. Stopping treatment was not considered equal to continuing treatment. Exploration of the patients' wishes was done implicitly, and shared responsibility for the decision was not highly recognized. The main barriers to shared decision making were preferences of both patients and specialists for starting or continuing treatment and assumptions of physicians about knowing what patients want. CONCLUSION: Medical specialists recognized the importance of patient involvement but experienced difficulty in sharing decision making in practice. Elements of shared decision making are partly followed but do not guide decision making. To improve cancer care, education of medical specialists and adjustment to the elements are needed to involve patients.