Setting the Stage for Cancer: Stay Soft and Optimistic.

In the Netherlands, one out of two people will be confronted with the diagnosis of cancer sometime in their life. Against this increased number of patients, a large proportion luckily can be cured. Today, a rather high proportion of people receive treatment to control cancer growth or stabilize the disease, sometimes, for the rest of their lives. If such long-standing treatment is administered for more than 10-20 years, the stage of cancer is presently often not referred to as "palliative" anymore, but much more often as "chronic." It could be argued that regardless of the cancer disease stage you are in and whether you are or can be cured, your cancer diagnosis nevertheless has become part of your life, including the experience of chronicity. Discussions surrounding the chronicity of cancer in the context of cancer are still ongoing. This is especially the case because "experiencing chronicity" is dependent on the type of cancer and is less applicable in cancers where the prognosis is often less than one year, such as is more frequently the case with lung or pancreatic cancer. In all situations, experiencing chronicity nevertheless brings along uncertainty, either with or without chronic stress. Combatting stress by choosing the right wording, maintaining an optimistic stance along with physical activity and/or psychosocial education seems important to optimize well-being and to stabilize tumor growth or remove the tumor. In conclusion, chronicity in the context of treating and caring for cancer seems a somewhat gray area. However, regardless in how we, as medical professionals, speak about cancer with long-standing disease trajectories (that sometimes even can be cured), it first of all seems important to approach, take care, and treat patients well. This can facilitate discussions with patients about their disease and disease experiences. Moreover, it can stimulate patients themselves to take responsibility for their own health, which can be of added value to the entire disease trajectory.

Clinicians' experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands.

AIM: To explore (1) experiences of primary care physicians (PCPs) and oncological medical specialists about providing care to patients living longer with incurable cancer, and (2) their preferences concerning different care approaches (palliative support, psychological/survivorship care support). BACKGROUND: At present, oncological medical specialists as well as PCPs are exploring how to improve and better tailor care to patients living longer with incurable cancer. Our previous study at the in-patient oncology unit showed that patients living longer with incurable cancer experience problems in how to deal with a prognosis that is insecure and fluctuating. To date, it could be argued that treating these patients can be done with a 'palliative care' or a 'survivorship/psychosocial care' approach. It is unknown what happens in actual medical practice. METHODS: We performed multidisciplinary group meetings: 6 focus groups (3 homogenous groups with PCPs (n = 15) and 3 multidisciplinary groups (n = 17 PCPs and n = 6 medical specialists) across different parts of the Netherlands. Qualitative data were analysed with thematic analysis. FINDINGS AND CONCLUSIONS: In the near future, PCPs will have an increasing number of patients living longer with incurable cancer. However, in a single PCP practice, the experience with incurable cancer patients remains low, partly because patients often prefer to stay in contact with their medical specialist. PCPs as well as medical specialists show concerns in how they can address this disease phase with the right care approach, including the appropriate label (e.g. palliative, chronic, etc.). They all preferred to be in contact early in the disease process, to be able to discuss and take care for the patients' physical and psychological well-being. Medical specialists can have an important role by timely referring their patients to their PCPs. Moreover, the disease label 'chronic' can possibly assist patients to live their life in the best possible way.

Friendship during patients' stable and unstable phases of incurable cancer: a qualitative interview study.

OBJECTIVES: Little is known about the added value of friendship during the care of intensive cancer disease trajectories. Friends, however, can play an important (caring-)role to increase their friends' (mental) well-being. We explored the experiences and desires of friends while their ill friends were-most of the time-in a stable phase of incurable cancer. DESIGN: Qualitative study in the Netherlands based on 14 in-depth interviews with friends of patients living with incurable cancer. Interviews were performed at the home setting or the friend's office. Data gathering was inspired by grounded theory and analysed with a thematic analysis. SETTING: The home setting/friend's office. RESULTS: Friends reported to experience difficulties in how and how often they wanted to approach their ill friends. They emphasised the ever-present knowledge of cancer inside their friends' body as a 'time bomb'. They seemed to balance between the wish to take care for their ill friend, having a good time and not knowing what their ill friend desired at specific times. Some friends felt burdened with or forced to provide more care than they could, although they acknowledged that this relationship provided space to reflect about their own life. CONCLUSIONS: Friends are constantly negotiating and renegotiating their relationship depending on the severity of the disease, transparency of patients about their illness, their previous experiences and personal circumstances in life. Although a decrease in friendship may impact a patient's quality of life, friends also need to be protected against providing more care than they are willing or able to give. Healthcare professionals, being aware of this phenomenon, can assist in this.

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.

Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands.

OBJECTIVE: Advances in oncology increasingly result in protracted disease trajectories for patients with incurable cancer. In this disease phase, patients are aware of the incurable nature of cancer although they are not yet approaching the last phase of life. We explored the challenges for patients confronted with protracted incurable cancer. DESIGN: Ethnographic study (2015-2017) based on conversations with patients, observations at a day-care unit and a selection of information from the medical records of patients who died during the study period. SETTING: The day-care unit of a comprehensive cancer centre in the Netherlands. PARTICIPANTS: Nineteen patients with stage IV breast cancer (in remission, >1 year after diagnosis) and 11 patients with stage IV lung-cancer (in remission, >6 months after diagnosis). RESULTS: In patients who had died during the study period, the treatment response often fluctuated between stable, remission and progression throughout the course of the disease. Patients reported that this fluctuation could be overwhelming. However, as patients grew accustomed to having protracted incurable cancer, the distress associated with fluctuations (perceived in scan results) slowly faded. Patients reported that cancer became part of who they were. At the day-care unit, most patients talked about their disease in an optimistic or neutral way and expressed delight in life. They often expressed gratefulness for the possible prolongation of life, expressed hope and tried to stay optimistic. This was frequently reinforced by optimistic doctors and nurses. Relatives, however, could downplay such optimism. Moreover, some patients acknowledged that hope was qualified by their personal challenges regarding their disease. CONCLUSIONS: In situations where tumours remained in remission or were stable for extended periods, patients grew accustomed to having cancer. At the day-care unit, medical professionals typically encouraged an attitude of being hopeful and optimistic, which could be downplayed by relatives. More research is warranted to explore this protracted disease phase and this optimistic view among healthcare professionals.

Doctors' reports about palliative systemic treatment: A medical record study.

BACKGROUND: Decisions about palliative systemic treatment are key elements of palliative and end-of-life care. Such decisions must often be made in complex, clinical situations. AIM: To explore the content of medical records of patients with advanced non-small cell lung cancer and pancreatic cancer with specific emphasis on doctors' notes about decisions on palliative systemic treatment. DESIGN: Medical record review (2009-2012) of 147 cancer patients containing 276 notes about palliative systemic treatment. We described the proportion of notes/medical records containing pre-specified items relevant to palliative systemic treatment. We selected patients using the nationwide Netherlands Cancer Registry. SETTING: Hospital based. RESULTS: About 75% of all notes reported doctors' considerations to start/continue palliative systemic treatment, including information about the prognosis (47%), possible survival gain (22%), patients' wish for palliative systemic treatment (33%), impact on quality of life (8%), and patient's age (3%). Comorbidity (82%), smoking status (78%) and drinking behaviour (63%) were more often documented than patients' performance status (16%). Conversations with the patient/family about palliative systemic treatment were reported in 49% of all notes. Response measurements and dose adaptations were documented in 75% and 71% of patients who received palliative systemic treatment respectively. CONCLUSION: Medical records provide insight into the decision-making process about palliative systemic treatment. The content and detail of doctors' notes, however, widely varies especially concerning their palliative systemic treatment considerations. Registries that aim to measure the quality of (end-of-life) care must be aware of this outcome. Future research should further explore how medical records can best assist in evaluating the quality of the decision-making process in the patient's final stage of life.

[Living with incurable cancer]. / Leven met niet meer te genezen kanker.

Anti-cancer treatments for various subtypes of cancer have significantly improved. As a result, the number of cancer patients who cannot be completely cured but may live for a considerable period of time is growing. A 72-year-old woman was diagnosed with metastatic EGFR-mutated non-small-cell lung cancer. She received anti-tumour treatment with gefitinib for almost two years and experienced only limited side effects. She was anxious about not knowing her prognosis but after visiting a psychologist she feels as if she can continue life. A 46-year-old woman started to experience symptoms of depression two years after treatment for metastatic breast cancer. A visit to a psycho-oncologist proved to be very helpful. She does not want to know her prognosis and is particularly happy that everything is going well at present. These two cases illustrate that patients living longer with incurable cancer may experience specific dilemmas. We make several recommendations for the care of this group of patients.

Bereaved relatives' experiences during the incurable phase of cancer: a qualitative interview study.

OBJECTIVE: To examine bereaved relatives' experiences from time of diagnosis of incurable cancer until death with specific emphasis on their role in the (end-of-life) decision-making concerning chemotherapy. DESIGN: Qualitative interview study. SETTING: Hospital-based. PARTICIPANTS AND METHODS: In-depth interviews with 15 close relatives of patients who died from non-small cell lung cancer or pancreatic cancer, using a thematic content analysis. RESULTS: All relatives reported that patients' main reason to request chemotherapy was the possibility to prolong life. Relatives reported that patients receiving chemotherapy had more difficulty to accept the incurable nature of their disease than patients who did not. They mostly followed the patients' treatment wish and only infrequently suggested ceasing chemotherapy (because of side effects) despite sometimes believing that this would be a better option. Relatives continuously tried to support the patient in either approaching the death or in attaining hope to continue life satisfactorily. Most relatives considered the chemotherapy period meaningful, since it sparked patients' hope and was what patients wanted. Cessation of chemotherapy caused a relief but coincided with physical deterioration and an increased caregivers' role; many relatives recalled this latter period as more burdensome. CONCLUSIONS: Relatives tend to follow patients' wish to continue or cease chemotherapy, without expressing their own feelings, although they were more inclined to opt cessation. They experience a greater caregiver role after cessation and their feelings of responsibility associated with the disease can be exhausting. More attention is needed to reduce relatives' distress at the end of life, also to fully profit from this crucial form of (informal) healthcare.

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.