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1.
BMC Neurol ; 24(1): 28, 2024 Jan 15.
Article in English | MEDLINE | ID: mdl-38225561

ABSTRACT

BACKGROUND: Up to 65% of people with multiple sclerosis (PwMS) develop cognitive deficits, which hampers their ability to work, participating in day-to-day life and ultimately reducing quality of life (QoL). Early cognitive symptoms are often less tangible to PwMS and their direct environment and are noticed only when symptoms and work functioning problems become more advanced, i.e., when (brain) damage is already advanced. Treatment of symptoms at a late stage can lead to cognitive impairment and unemployment, highlighting the need for preventative interventions in PwMS. AIMS: This study aims to evaluate the (cost-) effectiveness of two innovative preventative interventions, aimed at postponing cognitive decline and work functioning problems, compared to enhanced usual care in improving health-related QoL (HRQoL). METHODS: Randomised controlled trial including 270 PwMS with mild cognitive impairment, who have paid employment ≥ 12 h per week and are able to participate in physical exercise (Expanded Disability Status Scale < 6.0). Participants are randomised across three study arms: 1) 'strengthening the brain' - a lifestyle intervention combining personal fitness, mental coaching, dietary advice, and cognitive training; 2) 'strengthening the mind' - a work-focused intervention combining the capability approach and the participatory approach in one-on-one coaching by trained work coaches who have MS themselves; 3) Control group-receiving general information about cognitive impairment in MS and receiving care as usual. Intervention duration is four months, with short-term and long-term follow-up measurements at 10 and 16 months, respectively. The primary outcome measure of the Don't be late! intervention study will be HRQoL as measured with the 36-item Short Form. Secondary outcomes include cognition, work related outcomes, physical functioning, structural and functional brain changes, psychological functioning, and societal costs. Semi-structured interviews and focus groups with stakeholders will be organised to qualitatively reflect on the process and outcome of the interventions. DISCUSSION: This study seeks to prevent (further) cognitive decline and job loss due to MS by introducing tailor-made interventions at an early stage of cognitive symptoms, thereby maintaining or improving HRQoL. Qualitative analyses will be performed to allow successful implementation into clinical practice. TRIAL REGISTRATION: Retrospectively registered at ClinicalTrials.gov with reference number NCT06068582 on 10 October 2023.


Subject(s)
Cognitive Dysfunction , Multiple Sclerosis , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/therapy , Quality of Life , Unemployment , Cognitive Dysfunction/prevention & control , Exercise , Randomized Controlled Trials as Topic
2.
BMC Neurol ; 24(1): 26, 2024 Jan 13.
Article in English | MEDLINE | ID: mdl-38218777

ABSTRACT

BACKGROUND: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener©, has recently been developed. The aim of the current study is to validate the Multiple Screener© in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation. METHODS: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener©. Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener© is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires. DISCUSSION: Validating the Multiple Screener© in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS.


Subject(s)
Cognitive Dysfunction , Multiple Sclerosis , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Multiple Sclerosis/psychology , Quality of Life/psychology , Reproducibility of Results , Cross-Sectional Studies , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/etiology , Cognition , Neuropsychological Tests , Multicenter Studies as Topic
3.
Death Stud ; : 1-12, 2024 Apr 25.
Article in English | MEDLINE | ID: mdl-38662630

ABSTRACT

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one's own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents.

4.
CMAJ ; 194(13): E485-E491, 2022 04 04.
Article in English | MEDLINE | ID: mdl-35273025

ABSTRACT

BACKGROUND: Establishing irremediability of suffering is a central challenge in determining the appropriateness of medical assistance in dying (MAiD) for patients with a psychiatric disorder. We sought to evaluate how experienced psychiatrists define irremediable psychiatric suffering in the context of MAiD and what challenges they face while establishing irremediable psychiatric suffering. METHODS: We conducted a qualitative study of psychiatrists in the Netherlands with experience assessing irremediable psychiatric suffering in the context of MAiD. We collected data from in-depth, semistructured interviews focused on the definition of irremediable psychiatric suffering and on the challenges in establishing irremediability. We analyzed themes using a modified grounded theory approach. RESULTS: The study included 11 psychiatrists. Although irremediable psychiatric suffering is a prospective concept, most participants relied on retrospective dimensions to define it, such as a history of failed treatments, and expressed that uncertainty was inevitable in this process. When establishing irremediable psychiatric suffering, participants identified challenges related to diagnosis and treatment. The main diagnostic challenge identified was the frequent co-occurrence of more than 1 psychiatric diagnosis. Important challenges related to treatment included assessing the quality of past treatments, establishing when limits of treatment had been reached and managing "treatment fatigue." INTERPRETATION: Challenges regarding the definition, diagnosis and treatment of irremediable psychiatric suffering complicate the process of establishing it in the context of MAiD. Development of consensus clinical criteria for irremediable psychiatric suffering in this context and further research to understand "treatment fatigue" among patients with psychiatric disorders may help address these challenges. Registration: This study was preregistered under osf.io/2jrnd.


Subject(s)
Suicide, Assisted , Canada , Humans , Medical Assistance , Netherlands , Prospective Studies , Retrospective Studies , Suicide, Assisted/psychology
5.
Can J Psychiatry ; 67(10): 758-767, 2022 10.
Article in English | MEDLINE | ID: mdl-35311599

ABSTRACT

OBJECTIVE: Patients with a psychiatric disorder are eligible to request medical assistance in dying (MAID) in a small but growing number of jurisdictions, including the Netherlands and Belgium. In Canada, MAID for mental illness will become possible in 2023. For this request to be granted, most of these jurisdictions demand that the patient is competent in her request, and that the suffering experienced is unbearable and irremediable. Especially the criterion of irremediability is challenging to establish in patients with psychiatric disorders. The aim of this research is to establish what criteria Dutch and Belgian experts agree to be necessary in characterising irremediable psychiatric suffering (IPS) in the context of MAID. METHODS: A two-round Delphi procedure among psychiatrists with relevant experience. RESULTS: Thirteen consensus criteria were established: five diagnostic and eight treatment-related criteria. Diagnostically, the participants deem a narrative description and attention to contextual and systemic factors necessary. Also, a mandatory second opinion is required. The criteria concerning treatment show that extensive biopsychosocial treatment is needed, and the suffering must be present for several years. Finally, in the case of refusal, the participants agree that there are limits to the number of diagnostic procedures or treatments a patient must undergo. CONCLUSIONS: Consensus was found among a Dutch and Belgian expert group on potential criteria for establishing IPS in the context of MAID. These criteria can be used in clinical decision-making and can inform future procedural demands and research.


Subject(s)
Mental Disorders , Psychiatry , Suicide, Assisted , Canada , Female , Humans , Medical Assistance , Mental Disorders/psychology , Mental Disorders/therapy
6.
Adm Policy Ment Health ; 49(4): 587-595, 2022 07.
Article in English | MEDLINE | ID: mdl-35171375

ABSTRACT

Forensic High and Intensive Care (FHIC) has recently been developed as a new care model in Dutch forensic psychiatry. FHIC aims to provide contact-based care. To support Dutch forensic care institutions in the implementation of the model, a model fidelity scale was developed called the FHIC monitor. The aim of this study was to assess the inter-rater reliability, content validity, and construct validity of the FHIC monitor. A multi-methods design was used, combining qualitative and quantitative research. To collect data, audits and focus group meetings were organized to score care at individual wards with the monitor and get feedback from auditors and audit receiving teams about the quality of the monitor. In total, fifteen forensic mental healthcare institutions participated. The instrument showed acceptable inter-rater reliability and content validity, and a significant difference between expected high and low scoring institutions, supporting construct validity. The instrument can be used as a valid instrument to measure the level of implementation of the FHIC model on forensic psychiatric wards in the Netherlands.


Subject(s)
Forensic Psychiatry , Psychiatric Department, Hospital , Critical Care , Humans , Netherlands , Psychometrics , Reproducibility of Results
7.
Omega (Westport) ; : 302228221126257, 2022 Sep 13.
Article in English | MEDLINE | ID: mdl-38124329

ABSTRACT

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.

8.
Psychiatr Q ; 92(4): 1327-1339, 2021 12.
Article in English | MEDLINE | ID: mdl-33772426

ABSTRACT

The High and Intensive Care model (HIC) was developed to reduce coercion and improve the quality of acute mental health care in the Netherlands. This study aimed to identify drivers of change which motivate professionals and management to implement HIC, and to identify facilitators and barriers to the implementation process. 41 interviews were conducted with multiple disciplines on 29 closed acute admission wards for adult psychiatric patients of 21 mental healthcare institutions in the Netherlands. The interviews were analysed by means of thematic analysis, consisting of the steps of open coding, axial coding and selective coding. Findings reveal three major drivers of change: the combination of existing interventions in one overall approach to reduce coercion, the focus on contact and cooperation and the alignment with recovery oriented care. Facilitators to implementation of HIC were leadership, involving staff, making choices about what to implement first, using positive feedback and celebrating successes, training and reflection, and providing operationalizable goals. Barriers included the lack of formal organizational support, resistance to change, shortage of staff and use of flex workers, time restraints and costs, lack of knowledge, lack of facilities, and envisaged shortcomings of the HIC standards. Drivers of change motivate staff to implement HIC. In the process of implementation, attention to facilitators and barriers on the level of culture, structure and practice is needed.


Subject(s)
Mental Disorders , Adult , Coercion , Critical Care , Hospitalization , Humans , Mental Disorders/therapy , Netherlands , Qualitative Research
9.
Can J Psychiatry ; 65(9): 593-603, 2020 09.
Article in English | MEDLINE | ID: mdl-32427501

ABSTRACT

OBJECTIVES: Physician-assisted death (PAD), also known as medical assistance in dying, of patients with a psychiatric disorder (PPD) is a global issue of debate. In most jurisdictions that allow PAD, irremediable suffering is a legal requirement, how to apply the concept of irremediability to PPD remains challenging. The aim of this article is to identify the main arguments concerning irremediability in the debate about PAD of PPD and give directions for further moral deliberation and empirical research. METHODS: Systematic searches in MEDLINE, Embase, and PsycINFO were combined with 4 additional search strategies. All conceptual-ethical articles, quantitative and qualitative empirical studies, guidelines, case reports, and commentaries that met the inclusion criteria were included, and a qualitative data synthesis was used to identify recurring themes within the literature. The study protocol was preregistered at the Open Science Framework under registration code: thjg8. RESULTS: A total of 50 articles met the inclusion criteria. Three main arguments concerning irremediability were found in the debate about PAD of PPD: uncertainty, hope, and treatment refusal. CONCLUSIONS: Uncertainty about irremediability is inevitable, so which level of certainty is morally required should be the subject of moral deliberation. Whether PAD induces or resolves hopelessness is an empirical claim that deserves clarification. Treatment refusal in search of PAD raises questions about treatment efficacy in this patient group and about decision-making in the context of the physician-patient relationship. Going forward, more attention should be given to epidemiological research and to specific challenges posed by different psychiatric disorders.


Subject(s)
Physicians , Suicide, Assisted , Humans , Physician-Patient Relations , Qualitative Research
10.
HEC Forum ; 32(1): 63-75, 2020 Mar.
Article in English | MEDLINE | ID: mdl-31883038

ABSTRACT

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee (MREC) regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members.


Subject(s)
Ethicists/psychology , Ethics Committees, Research/standards , Ethicists/statistics & numerical data , Ethics Committees, Research/trends , Humans , Interviews as Topic/methods , Netherlands , Qualitative Research
11.
BMC Palliat Care ; 18(1): 1, 2019 Jan 08.
Article in English | MEDLINE | ID: mdl-30621703

ABSTRACT

BACKGROUND: End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff's lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication. METHODS: Two cross-sectional Dutch studies, one in mental health facilities and one in nursing and care homes (PACE study). Nurses and care assistants were invited to complete a questionnaire in 2015. Multivariable logistic regression analyses were performed to identify determinants of high self-efficacy. RESULTS: Five hundred forty one nurses and care assistants completed a survey; 137 worked in mental health facilities, 172 in nursing homes, and 232 in care homes. Care staff at mental health facilities were the most knowledgeable about the World Health Organization's definition of palliative care: 76% answered 4-5 out of 5 items correctly compared to 38% of nursing home staff and 40% of care home staff (p < 0.001). Around 60% of care staff in all settings experienced time pressure. Care staff had high self-efficacy regarding end-of-life communication with patients: the overall mean score across all facilities was 5.47 out of 7 (standard deviation 1.25). Determinants of high self-efficacy were working in a mental health facility, age > 36, female, with formal palliative care training, and knowledge of the palliative care definition. CONCLUSION: Mental healthcare staff knew more about palliative care and had higher self-efficacy in end-of-life communication compared to nursing and care home staff. Educating care staff about providing palliative care and training them in it might improve end-of-life communication in these facilities.


Subject(s)
Professional-Patient Relations , Terminal Care/standards , Truth Disclosure , Adolescent , Adult , Cross-Sectional Studies , Female , Humans , Long-Term Care/methods , Long-Term Care/standards , Male , Middle Aged , Netherlands , Self Efficacy , Surveys and Questionnaires , Terminal Care/methods
12.
Med Health Care Philos ; 22(2): 201-209, 2019 Jun.
Article in English | MEDLINE | ID: mdl-30054860

ABSTRACT

Based on our empirical research on global meaning in people with spinal cord injury and people with stroke, we formulated 'inner posture' as a concept in rehabilitation. Inner posture, as we concluded from our empirical data, refers to the way in which people bear what cannot be changed. It helps them to live with their injury. Considering that much has already been written about meaning from a variety of disciplines, the question arises whether the concept of inner posture adds something new to the existing literature, or is just another name for a phenomenon that has already been described before in different terms. In this paper, we aim to investigate this and to clarify our conceptualization, by comparing the concept of inner posture with influential concepts in healthcare literature which seem to be more or less related. In the work of Puchalski regarding spirituality, Pargament regarding religion, Eliott regarding hope and Frankl regarding attitude, we found definitions and descriptions that seemed to come close to the phenomenon we refer to as inner posture. Because these concepts have various theoretical backgrounds, the comparison can help to better understand our concept of inner posture, through a process of dialogue between traditions, following Gadamer's notion of dialogue as fusion of horizons of understanding. We conclude that inner posture differs from the other concepts in several ways. Some of these differences are more fundamental, other are partial. This suggests that we identified a new perspective on a phenomenon partially described earlier. The comparison also inspired us to slightly adjust our definition and to formulate new research questions.


Subject(s)
Quality of Life , Spinal Cord Injuries/psychology , Spirituality , Stroke/psychology , Hope , Humans , Interpersonal Relations , Life Change Events , Morals , Philosophy, Medical , Religion
14.
Eur J Pediatr ; 176(10): 1365-1374, 2017 Oct.
Article in English | MEDLINE | ID: mdl-28844100

ABSTRACT

So far, a recognizable pattern of clinical symptoms for child sexual abuse (CSA), especially in young male children, is lacking. To improve early recognition of CSA, we reviewed physical complaints, physical examination, and tests on sexually transmitted infections (STIs) in confirmed victims (predominantly preschool boys) of CSA from the Amsterdam sexual abuse case (ASAC). We retrospectively analyzed the outcomes of the primary assessment using mixed methods: descriptive analysis of physical complaints, physical exams, and STI tests from medical files and a qualitative analysis on expert's interpretations of physical complaints and children's behavior during physical examination. We included 54 confirmed CSA victims, median age 3.2 (0-6) years, 43 boys (80%), and 11 girls (20%). Physical complaints were reported in 50%, of which gastrointestinal and anogenital complaints were most common. None of the children showed CSA-specific genital signs at physical examination. Most prominent finding during physical examination was a deviant behavioral response (anxiety, withdrawal, too outgoing) in 15 children (28%), especially in children who experienced anal/vaginal penetration. Testing for STIs was negative. CONCLUSION: Physical complaints and physical signs at examinations were non-specific for CSA. Deviant behavioral reactions during physical examination were the most prominent finding. Precise observation of a child's behavior during physical examination is needed. What is known • Child sexual abuse (CSA) affects many children on both the short and the long term but remains unrecognized in most cases. • So far, there is a lack of studies on symptom patterns of CSA in male, preschool children. What is new • None of the children showed CSA-specific findings at physical and anogenital examination; STIs were not found in the confirmed victims of CSA. • The most prominent finding was the deviant behavioral response of the children examined, especially in children who experienced anal/vaginal penetration; therefore, precise observation of a child's behavior during physical examination is a crucial part of the evaluation of suspected CSA.


Subject(s)
Child Abuse, Sexual/diagnosis , Child Behavior , Physical Examination/methods , Anxiety/diagnosis , Anxiety/etiology , Avoidance Learning , Child , Child Abuse, Sexual/psychology , Child, Preschool , Cross-Sectional Studies , Female , Humans , Infant , Infant, Newborn , Male , Qualitative Research , Retrospective Studies , Sexually Transmitted Diseases/diagnosis , Sexually Transmitted Diseases/etiology
15.
J Med Ethics ; 43(6): 374-378, 2017 06.
Article in English | MEDLINE | ID: mdl-27165839

ABSTRACT

The concept of competence is central to healthcare because informed consent can only be obtained from a competent patient. The standard approach to competence focuses on cognitive abilities. Several authors have challenged this approach by emphasising the role of emotions and values. Combining cognition, emotion and values, we suggest an approach which is based on the notion of practical wisdom. This focuses on knowledge and on determining what is important in a specific situation and finding a balance between various values, which are enacted in an individual's personal life. Our approach is illustrated by two cases of patients with obsessive-compulsive disorder.


Subject(s)
Decision Making/ethics , Emotions/ethics , Informed Consent/ethics , Mental Competency , Obsessive-Compulsive Disorder/psychology , Professional-Patient Relations/ethics , Cognition , Ethics Committees, Research , Female , Humans , Male , Middle Aged , Obsessive-Compulsive Disorder/therapy , Personal Autonomy , Psychiatry , Severity of Illness Index
16.
Health Expect ; 20(1): 69-84, 2017 02.
Article in English | MEDLINE | ID: mdl-26669902

ABSTRACT

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.


Subject(s)
Decision Making , Neoplasms/pathology , Patient Participation , Adult , Aged , Aged, 80 and over , Attitude of Health Personnel , Female , Humans , Interviews as Topic , Longitudinal Studies , Male , Middle Aged , Neoplasms/drug therapy , Physician-Patient Relations , Qualitative Research
17.
Support Care Cancer ; 24(3): 1317-25, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26329398

ABSTRACT

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.


Subject(s)
Colorectal Neoplasms/drug therapy , Drug Therapy/methods , Glioblastoma/drug therapy , Palliative Care/methods , Standard of Care , Terminal Care/methods , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged
18.
Oncologist ; 20(10): 1182-8, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26245676

ABSTRACT

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.


Subject(s)
Decision Making , Glioblastoma/drug therapy , Physicians , Attitude of Health Personnel , Focus Groups , Glioblastoma/pathology , Humans , Interviews as Topic , Life Support Care , Longitudinal Studies , Neoplasm Recurrence, Local , Physician-Patient Relations , Qualitative Research
19.
Palliat Med ; 29(5): 451-7, 2015 May.
Article in English | MEDLINE | ID: mdl-25634632

ABSTRACT

BACKGROUND: Decision-making in the acute phase after a severe stroke is complex and may involve life-and-death decisions. Apart from the medical condition and prognosis, quality of life and the deliberation of palliative care should be part of the decision-making process. Relatives play an important role by informing physicians about the patient's values and preferences. However, little is known about how the patients' relatives experience the decision-making process. AIM: To elicit the perspective of relatives of severe stroke patients with regard to the decision-making process in the acute phase in order to understand how they participate in treatment decisions. DESIGN: An exploratory qualitative interview approach guided by the principles of grounded theory. SETTINGS/PARTICIPANTS: Relatives of severe stroke patients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase. RESULTS: Four categories reflecting relatives' experiences were identified: (1) making decisions under time pressure, (2) the feeling of 'who am I' to decide, (3) reluctance in saying 'let her die' and (4) coping with unexpected changes. Following the treatment proposal of the physician was found to be the prevailing tendency of relatives in the decision-making process. CONCLUSION: A better understanding of the latent world of experiences of relatives that influence the decision-making process may help physicians and other health-care providers to better involve relatives in decision-making and enhance the care, including palliative care, for patients with severe stroke in line with their values and preferences. Communication between physician and relatives seems vital in this process.


Subject(s)
Decision Making , Family/psychology , Palliative Care/psychology , Stroke/therapy , Terminal Care/psychology , Adaptation, Psychological , Aged , Aged, 80 and over , Female , Grounded Theory , Humans , Male , Middle Aged , Qualitative Research , Quality of Life , Surveys and Questionnaires
20.
J Med Ethics ; 41(8): 599-606, 2015 Aug.
Article in English | MEDLINE | ID: mdl-25182697

ABSTRACT

BACKGROUND: We studied preferences on continuing or forgoing different types of treatments at the end of life in two groups: the general public and people with an advance directive (AD). Furthermore, we studied factors associated with these preferences and whether people's preferences concurred with the content of their AD. METHODS: A representative sample of the Dutch population (n=1402) and a cohort of people who own an AD, consisting of members of Right to Die-NL (NVVE, n=5661) and the Christian-orientated Nederlandse Patiënten Vereniging (NPV, n=1059), answered written questionnaires in 2005 or 2007. We used two hypothetical scenarios, about cancer and dementia, and asked questions about continuing or forgoing four medical treatments. RESULTS: A majority of the Dutch public (62-87%) and NVVE members (88-99%) wanted to forgo the different treatments in both scenarios, while members of the NPV generally wanted to continue treatment (46-73%). In all three groups, in both scenarios, a substantial group (13-38%) had different preferences for the different treatments. People were more explicit in their preferences in case of dementia than in case of cancer. Being female, over 55 years of age, having had a higher education and having no (significant) religion increased the odds to refuse treatment. ADs that gave the direction to refuse treatment generally concurred with the preference of their owners (85-98% wanting to refuse treatments). DISCUSSION: The fact that people with and without ADs have different preferences concerning different treatments and diseases stresses the importance of communication surrounding decision making at the end of life.


Subject(s)
Advance Directives , Decision Making/ethics , Dementia/psychology , Neoplasms/psychology , Quality of Life/psychology , Right to Die/ethics , Terminal Care/psychology , Advance Directives/psychology , Advance Directives/statistics & numerical data , Age Distribution , Humans , Netherlands/epidemiology , Patient Preference/statistics & numerical data , Patient Satisfaction , Psychometrics , Public Opinion , Sex Distribution , Terminal Care/ethics
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