Understanding provision of chemotherapy to patients with end stage cancer: qualitative interview study

Objective To examine health professionals’ experiences of and attitudes towards the provision of chemotherapy to patients with end stage cancer

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: retrospective analysis of a prospective population-based cohort aged 85 and over.

BACKGROUND: Despite fast-growing 'older old' populations, 'place of care' trajectories for very old people approaching death with or without dementia are poorly described and understood. AIM: To explore end-of-life transitions of 'older old' people across the cognitive spectrum. DESIGN: Population-based prospective cohort (United Kingdom) followed to death. SETTING/PARTICIPANTS: Mortality records linked to 283 Cambridge City over-75s Cohort participants' cognitive assessments <1 year before dying aged ≥ 85 years. RESULTS: Overall, 69% were community dwelling in the year before death; of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the 'usual address' was associated with cognition, overall fewer moving with increasing cognitive impairment - cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed (p < 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%-93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. CONCLUSION: Most very old community-dwelling individuals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. MESH TERMS: Cognitive impairment, Dementia, Aged, 80 and over, Aged, frail elderly, Patient Transfer, Residential characteristics, Homes for the aged, Nursing Homes, Delivery of Health Care, Terminal care Other key phrases: Older old, Oldest old, Place of death, Place of care, End-of-life care

Clinical management of emotions in patients with cancer: introducing the approach "emotional support and case finding"

The current approach to the management of emotions in patients with cancer is "distress screening and referral for the provision of psychosocial care." Although this approach

Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study

Background: An important principle underlying the Dutch Euthanasia Act is physicians' responsibility to alleviate patients' suffering. The Dutch Act states that euthanasia and physician-assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care. These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the presence of reasonable alternatives, consultation of another physician and the applied method of ending life. To demonstrate their compliance, the Act requires physicians to report euthanasia to a review committee. We studied which arguments Dutch physicians use to substantiate their adherence to the criteria and which aspects attract review committees' attention. Methods: We examined 158 files of reported euthanasia and physician-assisted suicide cases that were approved by the review committees. We studied the physicians' reports and the verdicts of the review committees by using a checklist. Results: Physicians reported that the patient's request had been well-considered because the patient was clear-headed (65%) and/or had repeated the request several times (23%). Unbearable suffering was often substantiated with physical symptoms (62%), function loss (33%), dependency (28%) or deterioration (15%). In 35%, physicians reported that there had been alternatives to relieve patients' suffering which were refused by the majority. The nature of the relationship with the consultant was sometimes unclear: the consultant was reported to have been an unknown colleague (39%), a known colleague (21%), otherwise (25%), or not clearly specified in the report (24%). Review committees relatively often scrutinized the consultation (41%) and the patient's (unbearable) suffering (32%); they had few questions about possible alternatives (1%). Conclusion: Dutch physicians substantiate their adherence to the criteria in a variable way with an emphasis on physical symptoms. The information they provide is in most cases sufficient to enable adequate review. Review committees' control seems to focus on (unbearable) suffering and on procedural issues

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

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

The facilitating role of chemotherapy in the palliative phase of cancer: qualitative interviews with advanced cancer patients.

OBJECTIVE: To explore the extent to which patients have a directing role in decisions about chemotherapy in the palliative phase of cancer and (want to) anticipate on the last stage of life. DESIGN: Qualitative interview study. METHODS: In depth-interviews with 15 patients with advanced colorectal or breast cancer at the medical oncology department in a Dutch teaching hospital; interviews were analysed following the principles of thematic content-analysis. RESULTS: All patients reported to know that the chemotherapy they received was with palliative intent. Most of them did not express the wish for information about (other) treatment options and put great trust in their physicians' treatment advice. The more patients were aware of the severity of their disease, the more they seemed to 'live their life' in the present and enjoy things besides having cancer. Such living in the present seemed to be facilitated by the use of chemotherapy. Patients often considered the 'chemotherapy-free period' more stressful than periods when receiving chemotherapy despite their generally improved physical condition. Chemotherapy (regardless of side-effects) seemed to shift patients' attention away from the approaching last stage of life. Interestingly, although patients often discussed advance care planning, they were reluctant to bring on end-of-life issues that bothered them at that specific moment. Expressing real interest in people 'as a person' was considered an important element of appropriate care. CONCLUSIONS: Fearing their approaching death, patients deliberately focus on living in the present. Active (chemotherapy) treatment facilitates this focus, regardless of the perceived side-effects. However, if anxiety for what lies ahead is the underlying reason for treatment, efforts should be made in assisting patients to find other ways to cope with this fear. Simultaneously, such an approach may reduce the use of burdensome and sometimes costly treatment in the last stage of life

Palliative treatment alternatives and euthanasia consultations: a qualitative interview study

There is much debate about euthanasia within the context of palliative care. The six criteria of careful practice for lawful euthanasia in The Netherlands aim to safeguard the euthanasia practice against abuse and a disregard of palliative treatment alternatives. Those criteria need to be evaluated by the treating physician as well as an independent euthanasia consultant. To investigate 1) whether and how palliative treatment alternatives come up during or preceding euthanasia consultations and 2) how the availability of possible palliative treatment alternatives are assessed by the independent consultant. We interviewed 14 euthanasia consultants and 12 physicians who had requested a euthanasia consultation. We transcribed and analyzed the interviews and held consensus meetings about the interpretation. Treating physicians generally discuss the whole range of treatment options with the patient before the euthanasia consultation. Consultants actively start thinking about and proposing palliative treatment alternatives after consultations, when they have concluded that the criteria for careful practice have not been met. During the consultation, they take into account various aspects while assessing the criterion concerning the availability of reasonable alternatives, and they clearly distinguish between euthanasia and continuous deep sedation. Most consultants said that it was necessary to verify which forms of palliative care had previously been discussed. Advice concerning palliative care seemed to be related to the timing of the consultation ("early" or "late"). Euthanasia consultants were sometimes unsure whether or not to advise about palliative care, considering it not their task or inappropriate in view of the previous discussions. Two different roles of a euthanasia consultant were identified: a limited one, restricted to the evaluation of the criteria for careful practice, and a broad one, extended to actively providing advice about palliative care. Further medical and ethical debate is needed to determine consultants' most appropriate rol