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.

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.

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.

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.

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.

Older peoples' attitudes towards euthanasia and an end-of-life pill in The Netherlands: 2001-2009.

INTRODUCTION: With an ageing population, end-of-life care is increasing in importance. The present work investigated characteristics and time trends of older peoples' attitudes towards euthanasia and an end-of-life pill. METHODS: Three samples aged 64 years or older from the Longitudinal Ageing Study Amsterdam (N=1284 (2001), N=1303 (2005) and N=1245 (2008)) were studied. Respondents were asked whether they could imagine requesting their physician to end their life (euthanasia), or imagine asking for a pill to end their life if they became tired of living in the absence of a severe disease (end-of-life pill). Using logistic multivariable techniques, changes of attitudes over time and their association with demographic and health characteristics were assessed. RESULTS: The proportion of respondents with a positive attitude somewhat increased over time, but significantly only among the 64-74 age group. For euthanasia, these percentages were 58% (2001), 64% (2005) and 70% (2008) (OR of most recent versus earliest period (95% CI): 1.30 (1.17 to 1.44)). For an end-of-life pill, these percentages were 31% (2001), 33% (2005) and 45% (2008) (OR (95% CI): 1.37 (1.23 to 1.52)). For the end-of-life pill, interaction between the most recent time period and age group was significant. CONCLUSIONS: An increasing proportion of older people reported that they could imagine desiring euthanasia or an end-of-life pill. This may imply an increased interest in deciding about your own life and stresses the importance to take older peoples' wishes seriously.

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.

Artificial nutrition and hydration for patients with advanced dementia: perspectives from medical practitioners in the Netherlands and Australia.

The appropriate use of artificial nutrition or hydration (ANH) for patients with advanced dementia continues to be a subject of debate. We investigated opinions of Dutch and Australian doctors about the use of ANH in patients with advanced dementia. We interviewed 15 Dutch doctors and 16 Australian doctors who care for patients with advanced dementia. We transcribed and analysed the interviews and held consensus meetings about the interpretation. We found that Dutch and Australian doctors use similar medical considerations when they decide about the use of ANH. In general, they are reluctant to start ANH. Disparities between the Dutch and Australian doctors are related to the process of decision-making: Dutch doctors seem to put more emphasis on a comprehensive assessment of the patient's actual situation, whereas Australian doctors are more inclined to use scientific evidence and advance directives. Furthermore, Dutch doctors take the primary responsibility themselves whereas Australian general practitioners seem to be more inclined to leave the decision to the family. It seems that Dutch and Australian doctors use somewhat different care approaches for patients with advanced dementia. Combining the Dutch comprehensive approach and the Australian analytic approach may serve the interest of patients and their families best.

End-of-life practices in the Netherlands under the Euthanasia Act.

BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. METHODS: We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. RESULTS: In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. CONCLUSIONS: The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation.

Dutch experience of monitoring active ending of life for newborns.

INTRODUCTION: In 2007, a national review committee was instituted in The Netherlands to review cases of active ending of life for newborns. It was expected that 15-20 cases would be reported. To date, however, only one case has been reported to this committee. Reporting is essential to obtain societal control and transparency; the possible explanations for this lack of reporting were therefore explored. METHODS: Data on end-of-life decision-making were scrutinised from Dutch nation-wide studies (1995, 2001 and 2005), before institution of the committee. Physicians received a questionnaire about their medical decision-making for stratified samples of deceased infants up to 1 year, drawn from the central death registry. RESULTS: In 2005, 58% of all deaths were preceded by an end-of-life decision, compared with 68% in 2001 and 62% in 1995. The use of drugs with a possible life-shortening effect tended to be lower. In 2005, all four cases in the study in which an infants' life was actively ended were preceded by a decision to forego life-prolonging treatment. In three cases, the infant's life expectancy was short; one case involved a longer life expectancy. DISCUSSION: The expected number of cases is probably an overestimation due to changes in medical practice such as the tendency to attribute less life-shortening effects to opioids. The lack of reports is probably also associated with requirements in the regulation; it may be difficult to fulfil them due either to time constraints or the nature of the suffering that is addressed. If societal control of active ending of life is considered useful, changes in the regulation may be needed.

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.

The reporting rate of euthanasia and physician-assisted suicide: a study of the trends.

OBJECTIVES: To study trends in reporting rates of euthanasia from 1990 to 2005 in relation to whether recommended or nonrecommended drugs were used, and the most important differences between reported and unreported cases in 2005. RESEARCH DESIGN: Questionnaires were sent to a sample of 6860 physicians who had reported a death in 2005 (response 78%). Previously, 3 similar studies were done at 5-year intervals. The total number of euthanasia and physician-assisted suicide cases was estimated using a "gold standard" definition: death was-according to the physician-the result of the use of drugs at the explicit request of the patient with the explicit goal of hastening death (denominator). The Euthanasia Review Committees provided the number of reported cases (numerator). RESULTS: The reporting rate of euthanasia and physician-assisted suicide increased from 18% in 1990, 41% in 1995, and 54% in 2001 to 80% in 2005. The reporting rate in the subgroup of euthanasia with recommended drugs (barbiturates and muscle relaxants) was 73% in 1995, 71% in 2001, and 99% in 2005. The reporting rate of euthanasia with nonrecommended drugs (eg, opioids) was below 3% in 1995, 2001, and 2005. Unreported euthanasia differed also from reported euthanasia in the fact that physicians less often labeled their act as euthanasia. CONCLUSIONS: Euthanasia with nonrecommended drugs is almost never reported. The total reporting rate increased because of an increase in the use of recommended drugs for euthanasia between 1995 and 2001, and an increase in the reporting rate for euthanasia with recommended drugs between 2001 and 2005.

A comparison of physicians' end-of-life decision making for non-western migrants and Dutch natives in the Netherlands.

BACKGROUND: Non-western migrants have a different cultural background that influences their attitudes towards healthcare. As the first wave of this relatively young group is growing older, we investigated, for the first time, whether end-of-life decision-making practices for non-western migrants differ from Dutch natives. METHODS: In 2005, we sent questionnaires to physicians who attended deaths identified from the central death registry of Statistics Netherlands (n = 9651; non-western migrants: n = 627, total response: 78%). We performed multivariate logistic regression analyses adjusted for age, sex and cause of death. RESULTS: Of all deaths of non-western origin, 54% were non-sudden, whereas 67% of all deaths with a Dutch origin were non-sudden (P = 0.00). A relatively large number of non-suddenly deceased persons of non-western origin had died under the age of 65 (53%) as compared to Dutch natives (15%). Euthanasia was performed in 2.4% of all non-suddenly deceased persons in the non-western migrant group as compared to 2.7% in the native Dutch group (adjusted odds ratio = 0.82, P = 0.63). Alleviation of symptoms with a potential life-shortening effect was somewhat lower for non-western migrants (30% vs. 38%; adjusted odds ratio = 0.78, P = 0.07). Physicians decided to forgo potentially life-prolonging treatment in comparable rates (26% vs. 23%; adjusted odds ratio = 1.1, P = 0.73). Yet, the type of treatments forgone and underlying reasons differed. CONCLUSION: Euthanasia was not less common among non-suddenly deceased non-western migrants as compared to Dutch natives. However, intensive symptom alleviation was used less frequently and forgoing potentially life-prolonging treatment involved different characteristics. These findings suggest that cultural factors may affect end-of-life decision making.

Forgoing artificial nutrition or hydration in patients nearing death in six European countries.

Whether or not artificial nutrition or hydration (ANH) may be forgone in terminally ill patients has been the subject of medical and ethical discussions. Information about the frequency and background characteristics of making decisions to forgo ANH is generally limited to specific clinical settings. The aim of this study was to compare the practice of forgoing ANH in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. In each country, random samples were drawn from death registries. Subsequently, the reporting physician received a questionnaire about the medical decisions that preceded the patient's death. The total number of deaths studied was 20,480. The percentage of all deaths that were preceded by a decision to forgo ANH varied from 2.6% in Italy to 10.9% in The Netherlands. In most countries, decisions to forgo ANH were more frequently made for female patients, patients aged 80 years or older, and for patients who died of a malignancy or disease of the nervous system (including dementia). Of patients in whom ANH was forgone, 67%-93% were incompetent. Patients in whom ANH was forgone did not receive more potentially life-shortening drugs to relieve symptoms than other patients for whom other end-of-life decisions had been made. Decisions to forgo ANH are made in a substantial percentage of terminally ill patients. Providing all patients who are in the terminal stage of a lethal disease with ANH does not seem to be a widely accepted standard among physicians in Western Europe.

[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.