Understanding Palliative Cancer Chemotherapy: About Shared Decisions and Shared Trajectories

Most models of patient-physician communication take decision-making as a central concept. However, we found that often the treatment course of metastatic cancer patients is not easy to describe in straightforward terms used in decision-making models but is instead frequently more erratic. Our aim was to analyse these processes as trajectories. We used a longitudinal case study of 13 patients with metastatic colorectal and pancreatic cancer for whom palliative chemotherapy was a treatment option, and analysed 65 semi-structured interviews. We analysed three characteristics of the treatment course that contributed to the ‘erraticness’ of the course: (1) The treatment (with or without chemotherapy) contained many options; (2) these options were not stable entities to be decided upon, but changed identity over the course of treatment, and (3) contrary to the closure (option X means no option Y, Z, etc.) a decision implies, the treatment course was a continuous process in which options instead remained open. When the treatment course is characterised by these many and changeable options that do not result in closure, the shared decision-making model should take these into account. More attention needs to be paid to the erratic character of the process in which the doctor has to provide continuous information that is related to the changing situation of the patient; also, flexibility in dealing with protocols is warranted, as is vigilance about the overall direction of the process

Two-year neurodevelopmental outcome in children born extremely preterm:the EPI-DAF study

OBJECTIVE: In 2010, the Dutch practice regarding initiation of active treatment in extremely preterm infants was lowered from 25 completed weeks' to 24 completed weeks' gestation. The nationwide Extremely Preterm Infants - Dutch Analysis on Follow-up Study was set up to provide up-to-date data on neurodevelopmental outcome at 2 years' corrected age (CA) after this guideline change. Design: National cohort study. PATIENTS: All live born infants between 240/7 weeks' and 266/7 weeks' gestational age who were 2 years' CA in 2018-2020. MAIN OUTCOME MEASURE: Impairment at 2 years' CA, based on cognitive score (Bayley-III-NL), neurological examination and neurosensory function. RESULTS: 651 of 991 live born infants (66%) survived to 2 years' CA, with data available for 554 (85%). Overall, 62% had no impairment, 29% mild impairment and 9% moderate-to-severe impairment (further defined as neurodevelopmental impairment, NDI). The percentage of survivors with NDI was comparable for infants born at 24 weeks', 25 weeks' and 26 weeks' gestation. After multivariable analysis, severe brain injury and low maternal education were associated with higher odds on NDI. NDI-free survival was 48%, 67% and 75% in neonatal intensive care unit (NICU)-admitted infants at 24, 25 and 26 weeks' gestation, respectively. CONCLUSIONS: Lowering the threshold has not been accompanied by a large increase in moderate-to-severely impaired infants. Among live-born and NICU-admitted infants, an increase in NDI-free survival was observed from 24 weeks' to 26 weeks' gestation. This description of a national cohort with high follow-up rates gives an accurate description of the range of outcomes that may occur after extremely preterm birth

Health care needs in end-stage COPD: a structured literature review

OBJECTIVE: To give an overview of relevant literature regarding health care needs in end-stage COPD and to identify specific areas where knowledge about needs is still lacking. METHODS: We conducted a structured literature review. We used Bradshaw's classification system. RESULTS: Seventy-seven publications were found. Ten publications were included in the review. The results reported cover a wide range of subjects, all regarded as health care needs. Most reported on 'felt need', i.e. needs that are mentioned by patients themselves. Results on 'normative need' (based on expert judgement) were lacking. CONCLUSION: The literature about the health care needs of patients in the end-stage of COPD is sparse, and there is no commonly accepted definition of health care needs. Looking at the increasing demand for end of life care for COPD patients, there is a clear need for further research on this subject. PRACTICE IMPLICATIONS: We especially need to focus on agreement between experts and professionals so that guidelines can be developed. To attend to the unfulfilled needs of end-stage COPD patients, the delivery of health care should be re-examined carefull

Cost issues in new disease-modifying treatments for advanced cancer: in-depth interviews with physicians

BACKGROUND: The high costs of new disease-modifying, but non-curative, treatments in advanced cancer are increasingly regarded as problematic. Little is known about oncologists' beliefs regarding their ethical obligations for cost considerations about these types of treatments. PARTICIPANTS AND METHODS: This study used in-depth interviews to explore how physicians in The Netherlands view their role regarding the cost of potentially beneficial but expensive drugs, especially for new disease-modifying treatments in advanced cancer. Thirty-six physicians, 19 physicians caring for patients with advanced cancer and 17 physicians participating in four national oncology guideline committees, were interviewed. RESULTS: Physicians identified cost considerations on three levels: individual patient care, hospital policies and national guideline development. Generally, physicians were reluctant to consider costs in individual patient care, believing this compromised their ethical obligations. They did consider costs relevant at the level of hospital policies regarding coverage for drugs. They were divided regarding the role of cost considerations in national practice guideline development. CONCLUSIONS: The distinctive levels of decision-making were understood to be morally relevant as physicians separated their role as direct care provider from that of taking part in decisions about coverage. Because of the fundamental tension between the physician obligation to act in the best interest of the individual patient, the vulnerability of having a life-threatening illness and the inevitability of sharing resources in modern health care, cost considerations will always be problematic for physicians. The roles physicians play at different levels, especially at the levels of hospital policies and national practice guidelines, should further be developed and explicate

Quality of life versus prolongation of life in patients treated with chemotherapy in advanced colorectal cancer: A review of randomized controlled clinical trials

Oncologists disagree if chemotherapy in advanced cancer can improve quality of life (QoL), to prolong duration of life, or both. The objective of this study was to clarify the main treatment intention of palliative chemotherapy (PCT): the prolongation of life (PoL); or QoL. Randomized controlled clinical trials of PCT in advanced colorectal cancer that included HRQoL assessment were selected from PubMed and reviewed. Authors' conclusions were based on both PoL- and QoL-related outcomes. However, if PoL and QoL outcomes of the experimental arm were opposite, which was the case in 13 out of 28 trials, the authors generally based their conclusion on PoL outcomes. Authors' conclusions focused mainly on PoL-related outcomes, while QoL-related outcomes were of overriding importance in only 1/28 case. QoL can therefore not be considered as the main outcome of PCT. The review shows that in the context of chemotherapy in advanced colorectal cancer, 'palliative' refers to a life-prolonging intention, whereas within palliative care it refers to an improvement in Qo

Good clinical practice en medisch-ethische toetsing: handvatten voor (beginnend) onderzoekers in de GGZ

In de geestelijke gezondheidszorg wordt in toenemende mate wetenschappelijk onderzoek gedaan, vooral in het kader van opleidingen. Er is onbekendheid met de regelgeving en ethiek bij beginnend onderzoekers. Zorgvuldige overwegingen - conform de richtlijnen voor good clinical practice (gcp) en medisch-ethische toetsing, worden daardoor lang niet altijd gemaakt. DOEL Beschrijven van praktische handvatten en stimuleren van het medisch-ethische denken bij patiëntgebonden onderzoek in de geestelijke gezondheidszorg. METHODE In dit artikel wordt een op de praktijkbehoefte gebaseerd overzicht van praktische handvatten en ethische overwegingen gegeven. RESULTATEN Dit artikel benadrukt dat onderzoekers reeds vóór de start van het onderzoek belangrijke afwegingen dienen te maken. Instructies daarvoor en richtlijnen voor medisch-ethische toetsing zijn te vinden in: het richtsnoer voor good clinical practice, het stroomschema van de Centrale Commissie Mensgebonden Onderzoek (ccmo) met de bijbehorende e-learningmodule en in de basiscursus ‘Regelgeving en organisatie voor klinisch onderzoekers’(brok). Praktische tips, geïllustreerd met voorbeelden, schetsen een kader om het medisch-ethisch denken te stimuleren. Tot slot is het van belang om de organisatorische inbedding van onderzoek in het kader van opleidingen te verbeteren. CONCLUSIE Basisinformatie over gcp en medisch-ethische toetsing bij patiëntgebonden onderzoek is via diverse kanalen beschikbaar. De uitdaging zit vooral in de inbedding van gcp in patiëntgebonden onderzoek door beginnend onderzoekers in de ggz

Medical and moral considerations regarding complex medical decisions in older patients with multimorbidity: a compact deliberation framework

Abstract In health care for older adults, patients with multimorbidity usually receive the same interventions as those patients without multimorbidity. However, standard curative or life-sustaining treatment options have to be considered carefully in view of the maximally attainable result in older and frail patients. To guide such complex medical decisions, we present a compact deliberation framework that could assist physician(s) in charge of the medical treatment of a specific elderly patient to systematize his own thinking about treatment and decisional responsibilities, in case of an intercurrent disease. The framework includes four questions to be addressed when deciding on a single urgent standard curative or life-sustaining intervention in acute medical problems of an elderly patient with multimorbidity: 1) What is known about the patient’s aims and preferences? 2) Will the intervention be effective? 3) Will the intervention support the aims and preferences of the patient? 4) In view of the aims and preferences, will the risks and benefits be in balance? If all four considerations are answered favorably, the intervention will fit patient-centered and appropriate care for frail older patients with multimorbidity. Application to a patient case illustrates how our framework can improve the quality of the shared decision-making process in care for older people and helps clarify medical and moral considerations regarding how to appropriately treat the individual patient

Two-year neurodevelopmental outcome in children born extremely preterm: The EPI-DAF study

Objective In 2010, the Dutch practice regarding initiation of active treatment in extremely preterm infants was lowered from 25 completed weeks' to 24 completed weeks' gestation. The nationwide Extremely Preterm Infants - Dutch Analysis on Follow-up Study was set up to provide up-to-date data on neurodevelopmental outcome at 2 years' corrected age (CA) after this guideline change. Design : National cohort study. Patients All live born infants between 240/7 weeks' and 266/7 weeks' gestational age who were 2 years' CA in 2018-2020. Main outcome measure Impairment at 2 years' CA, based on cognitive score (Bayley-III-NL), neurological examination and neurosensory function. Results 651 of 991 live born infants (66%) survived to 2 years' CA, with data available for 554 (85%). Overall, 62% had no impairment, 29% mild impairment and 9% moderate-to-severe impairment (further defined as neurodevelopmental impairment, NDI). The percentage of survivors with NDI was comparable for infants born at 24 weeks', 25 weeks' and 26 weeks' gestation. After multivariable analysis, severe brain injury and low maternal education were associated with higher odds on NDI. NDI-free survival was 48%, 67% and 75% in neonatal intensive care unit (NICU)-admitted infants at 24, 25 and 26 weeks' gestation, respectively. Conclusions Lowering the threshold has not been accompanied by a large increase in moderate-to-severely impaired infants. Among live-born and NICU-admitted infants, an increase in NDI-free survival was observed from 24 weeks' to 26 weeks' gestation. This description of a national cohort with high follow-up rates gives an accurate description of the range of outcomes that may occur after extremely preterm birth

Two-year neurodevelopmental outcome in children born extremely preterm: The EPI-DAF study

Objective In 2010, the Dutch practice regarding initiation of active treatment in extremely preterm infants was lowered from 25 completed weeks' to 24 completed weeks' gestation. The nationwide Extremely Preterm Infants - Dutch Analysis on Follow-up Study was set up to provide up-to-date data on neurodevelopmental outcome at 2 years' corrected age (CA) after this guideline change. Design: National cohort study. Patients All live born infants between 24 0/7 weeks' and 26 6/7 weeks' gestational age who were 2 years' CA in 2018-2020. Main outcome measure Impairment at 2 years' CA, based on cognitive score (Bayley-III-NL), neurological examination and neurosensory function. Results 651 of 991 live born infants (66%) survived to 2 years' CA, with data available for 554 (85%). Overall, 62% had no impairment, 29% mild impairment and 9% moderate-to-severe impairment (further defined as neurodevelopmental impairment, NDI). The percentage of survivors with NDI was comparable for infants born at 24 weeks', 25 weeks' and 26 weeks' gestation. After multivariable analysis, severe brain injury and low maternal education were associated with higher odds on NDI. NDI-free survival was 48%, 67% and 75% in neonatal intensive care unit (NICU)-admitted infants at 24, 25 and 26 weeks' gestation, respectively. Conclusions Lowering the threshold has not been accompanied by a large increase in moderate-to-severely impaired infants. Among live-born and NICU-admitted infants, an increase in NDI-free survival was observed from 24 weeks' to 26 weeks' gestation. This description of a national cohort with high follow-up rates gives an accurate description of the range of outcomes that may occur after extremely preterm birth