Addressing the needs of terminally-ill patients in Bosnia-Herzegovina: patients' perceptions and expectations.

BACKGROUND: Many terminally ill patients in Bosnia-Herzegovina (BiH) fail to receive needed medical attention and social support. In 2016 a primary healthcare centreer (PHCC) in Doboj (BiH) requested the methodological and technical support of a local partner (Fondacija fami) and the Geneva University Hospitals to address the needs of terminally ill patients living at home. In order to design acceptable, affordable and sustainable solutions, we involved patients and their families in exploring needs, barriers and available resources. METHODS: We conducted interviews with 62 purposely selected patients using a semi-structured interview guide designed to elicit patients' experiences, needs and expectations. Both qualitative and quantitative analyses were conducted, using an inductive thematic approach. RESULTS: While patients were aware that their illnesses were incurable, they were poorly informed about medical and social support resources available to them. Family members appeared to be patients' main source of support, and often suffered from exhaustion and financial strain. Patients expressed feelings of helplessness and lack of control over their health. They wanted more support from health professionals for pain and other symptom management, as well as for anxiety and depression. Patients who were bedridden or with reduced mobility expressed strong feelings of loneliness, social exclusion, and stigma from community members and - occasionally - from health workers. CONCLUSIONS: Our findings suggest a wide gap between patients' end-of-life care needs and existing services. In order to address the medical, psychological and social needs of terminally ill patients, a multi-pronged approach is called for, including not only better symptom management through training of health professionals and improved access to medication and equipment, but also a coordinated inter-professional, inter-institutional and multi-stakeholder effort aimed at offering comprehensive medical, psycho-social, educational and spiritual support.

Nurses' perspectives on whether medical aid in dying should be accessible to incompetent patients with dementia: findings from a survey conducted in Quebec, Canada.

We conducted a survey in a random sample of 514 Quebec nurses caring for the elderly to assess their attitudes towards extending medical aid in dying to incompetent patients and to explore associated factors. Attitudes were measured using clinical vignettes featuring a hypothetical patient with Alzheimer disease. Vignettes varied according to the stage of the disease (advanced or terminal) and the presence or absence of a written request. Of the 291 respondents, 83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably. A similar proportion (83%, p = 0.871) were in favor of extending medical aid in dying to incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity.

A qualitative exploration of the collaborative working between palliative care and geriatric medicine: Barriers and facilitators from a European perspective.

BACKGROUND: With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collaboration and integration between palliative care and geriatric medicine from a European perspective. METHODS: Four semi-structured group interviews were undertaken with 32 participants from 18 countries worldwide. Participants were both clinicians (geriatricians, GPs, palliative care specialists) and academic researchers. The interviews were transcribed and independent analyses performed by two researchers who then reached consensus. RESULTS: Limited knowledge and understanding of what the other discipline offers, a lack of common practice and a lack of communication between disciplines and settings were considered as barriers for collaboration between palliative care and geriatric medicine. Multidisciplinary team working, integration, strong leadership and recognition of both disciplines as specialties were considered as facilitators of collaborative working. Whilst there are instances of close clinical working between disciplines, examples of strategic collaboration in education and policy were more limited. CONCLUSIONS: Improving knowledge about its principles and acquainting basic palliative care skills appears mandatory for geriatricians and other health care professionals. In addition, establishing more academic chairs is seen as a priority in order to develop more education and development at the intersection of palliative care and geriatric medicine.

European palliative care guidelines: how well do they meet the needs of people with impaired cognition?

OBJECTIVE: Numbers of people dying with cognitive impairment (intellectual disability (ID), dementia or delirium) are increasing. We aimed to examine a range of European national palliative care guidelines to determine if, and how well, pain detection and management for people dying with impaired cognition are covered. METHODS: Questionnaires were sent to 14 country representatives of the European Pain and Impaired Cognition (PAIC) network who identified key national palliative care guidelines. Data was collected on guideline content: inclusion of advice on pain management, whether cognitively impaired populations were mentioned, assessment tools and management strategies recommended. Quality of guideline development was assessed with the Appraisal of Guidelines Research and Evaluation (AGREE) instrument. RESULTS: 11 countries identified palliative care guidelines, 10 of which mentioned pain management in general. Of these, seven mentioned cognitive impairment (3 dementia, 2 ID and 4 delirium). Half of guidelines recommended the use of pain tools for people with cognitive impairment; recommended tools were not all validated for the target populations. Guidelines from the UK, the Netherlands and Finland included most information on pain management and detection in impaired cognition. Guidelines from Iceland, Norway and Spain scored most highly on AGREE rating in terms of developmental quality. CONCLUSIONS: European national palliative care guidelines may not meet the needs of the growing population of people dying with cognitive impairment. New guidelines should consider suggesting the use of observational pain tools for people with cognitive impairment. Better recognition of their needs in palliative care guidelines may drive improvements in care.

[Cancer and aging: an epidemiological fact]. / Cancer et vieillissement: une évidence épidémiologique.

Over the last fifty years we have witnessed the ageing of the population, leading to changes in patterns of morbidity and causes of mortality, with cancer being strongly represented. In the elderly population, oncological disease should be assessed differently than in younger patients. Indeed, the characteristics and the evolution of cancer, as well as patient care, vary with ageing. It is therefore essential to establish specific screening strategies and therapeutic support, by integrating this population in clinical trials, and taking into account the global needs of the elderly patient.

Palliative care for the geriatric patient in Europe. Survey describing the services, policies, legislation, and associations.

BACKGROUND: Knowledge about the quality of end-of-life care in the elderly patient in Europe is fragmented. The European Union Geriatric Medicine Society (EUGMS) Geriatric Palliative Medicine (GPM) Interest Group set as one of its goals to better characterize geriatric palliative care in Europe. OBJECTIVE: The goal of the current study was to map the existing palliative care structures for geriatric patients, the available policies, legislation, and associations in geriatric palliative medicine in different countries of Europe. METHODS: A questionnaire was sent to Geriatric and Palliative Medicine Societies of European countries through contact persons. The areas of interest were (1) availability of services for the management of geriatric patients by using vignette patients (advanced cancer, severe cardiac disease, and severe dementia), (2) policies, legislation of palliative care, and (3) associations involved in geriatric palliative medicine. RESULTS: Out of 21 countries contacted, 19 participated. Palliative care units and home care palliative consultation teams are available in most countries. In contrast, palliative care in long-term care facilities and in geriatric wards is less developed. A disparity was found between the available services and those most appropriate to take care of the three cases described in the vignettes, especially for the patient dying from non-malignant diseases. The survey also demonstrated that caregivers are not well prepared to care for the elderly palliative patient at home or in nursing homes. CONCLUSION: One of the challenges for the years to come will be to develop palliative care structures adapted to the needs of the elderly in Europe, but also to improve the education of health professionals in this field.

Frail old patients as a target population for cancer trials.

The recent distinction between co-morbidity and multi-morbidity well stresses the difficulty of managing old patients with cancer whose complexity is not captured by a list of diagnoses or biological burden alone. The most adequate answer found by oncologists and geriatricians was to work together for better evaluating the physiological age and body reserve of the patient. The gold standard tool to assess old patient with cancer is named Comprehensive Geriatric Assessment. Its systematic application needs geriatric competences and time. In this context, a great number of cancer patients are considered as "frail" because they have reduced available physiological reserves. They might not withstand stress when challenged. Oncologists and geriatricians have imagined an innovative process to change the screening procedure of these patients, determine the prognosis, adapt the treatment strategy, to increase the patient's survival and his/her quality of life. The internet website "www.clinicaltrials.com" only lists 8 studies focused on frail elders with cancer. Six of them are focused on specific cancers or specific treatments, one was applied to all kind of cancers and the last was an opinion overview from oncologists and geriatricians. The selection criteria of frail patients are very diverse and probably include cancer patients who are not comparable. It is now time to try to identify new practical, reliable and accurate tools to facilitate the inclusion of the same kind of patients suffering from the same kind of cancer to be able to give more appropriate care and at the same time to constitute a valuable data base. Existing tools are reviewed and analyzed.

Difficulties of residents in training in end-of-life care. A qualitative study.

Residents in training are first-line physicians in hospital settings and they are in the process of developing knowledge and mastering clinical skills. They have to confront complex tasks calling upon their personal background, professional identity and relationships with the patients. We conducted a qualitative study investigating the difficulties they perceive in end-of-life care. In all, 24 consecutive residents were presented with a written query asking them to indicate the difficulties they identify in the management of patients hospitalised for end-of-life care. Their responses were submitted to content analysis. Physicians' mean age was 28 +/- 2.2 years, 37% were women, average postgraduate training duration was 2.5 +/- 1.3 years. Content analysis elicited eight categories of difficulties: ability to provide adequate explanations, understand the patients' needs, have sufficient theoretical knowledge, avoid flight, avoid false reassurance, manage provision of time, face one's limits as a physician and be able to help despite everything. Residents' responses showed that they identify the complexity of care in terminally-ill patients early in their training. Their responses pointed to the 'right distance' in-between getting involved and preserving oneself as a dimension of major importance.

[Herpes zoster and post-herpetic neuralgia in older adults]. / Zona et névralgies postzostériennes de la personne âgée.

Varicella-Zoster virus is responsible for chickenpox and, after reactivation, herpes zoster. Herpes zoster causes a vesicular dermatomal rash, traditionally metameric. Old adults can present severe pain during the acute phase, and late complications, such as post-herpetic neuralgia that can trying and crippling. Initiated within the first 72 hours of the rash, antivirals accelerate rash healing, reducing both rash and acute pain severity but incompletely the onset of other complications. Complementary therapeutic drug is often necessary. However, their application in old, frail, co-morbid and often poly-medicated patients have to be carefully considered as their use may be contraindicated. A specific vaccine is enable to reduce herpes zoster-related morbidity.

Palliative care education in Swiss undergraduate medical curricula: a case of too little, too early.

Palliative medicine education is an important strategy in ensuring that the needs of terminally ill patients are met. A review was conducted in 2007 of the undergraduate curricula of all five of Switzerland's medical schools to identify their palliative care-related content and characteristics. The average number of mandatory hours of palliative care education is 10.2 h (median 8 h; range 0-27 h), significantly short of the 40 h recommended by the European Palliative Care Association's Education Expert Group. The median time allocated to designated palliative care blocks is 3 h (range 0-8 h). Most of the education occurs before the clinical years, and there are no mandatory clinical rotations. Three schools offer optional clinical rotations but these are poorly attended (<10% of students). Although a number of domains are covered, ethics-related content predominates; 21 of a total of 51 obligatory hours (41%). Communication related to palliative care is largely limited to 'breaking bad news'. In two of the schools, the teaching is done primarily by palliative care physicians and nurses (70% or more of the teaching). In the others, it is done mostly by educators in other clinical specialties and ethics (approximately 90% of the teaching). These findings show significant deficiencies.

Role of advance directives in palliative care units: a prospective study.

Advance directives (ADs) might be useful in achieving improved communication and satisfaction with decision making at the end-of-life. Our aims were to better characterise patients with advanced oncological disease who decided to complete ADs and to measure the effect of ADs completion on the satisfaction level with end-of-life care from both patients and their relatives. A prospective study was conducted in three palliative care units. Patients with advanced cancer were included if they met the following criteria: an estimated life expectancy of <6 months, fluency in French, Mini Mental State Examination >20 and not yet completed ADs. All the patients received information about ADs and decided whether to complete ADs or not. The level of satisfaction with involvement in the decision process concerning end-of-life care was assessed by means of a written questionnaire. In all, 53 of 228 patients were included, and 12 decided to complete ADs. Patients who completed ADs had statistically less depression one week after inclusion (P = 0.030), had a lower anxiety score on the second week and had a lower depression score on the third week. There was a trend towards a higher satisfaction level with the involvement of the patients in end-of-life care for those completing ADs (P = 0.878). In conclusion, each patient with an advanced progressive disease should be informed about ADs and be encouraged to complete the ADs with the aim to ease many fears as well as to improve communication.

[Anxiety in palliative care]. / Anxiété dans le cadre de soins palliatifs.

In palliative care, the intensity and duration of anxiety as well as its consequences on the patient's daily activities can significantly decrease his quality of life. Anxiety that does not incapacitate the patient to the point of his being unable to communicate or perform his usual activities does not necessarily require drug treatment. The non pharmacological treatments of anxiety are presented in some detail. Prescription of anxiolytic drugs in renal or hepatic failure, as well as when oral intake or venous access are difficult, is briefly discussed.

[Management of chronic pain in older persons]. / Prise en charge de la douteur chronique chez la personne âgée.

Chronic pain is common in older adults and its consequences are often severe. Several studies have demonstrated that pain in older adults is poorly controlled because they underreport pain and caregivers often underestimate patient's pain. Analgesics can be used safely and effectively in this population. Start with the lowest effective dose, monitor frequently on the basis of expected absorption and pharmacokinetics of the drugs and then titrate on the basis of clinically demonstrated effects and the side effects. Other aspects of the management of pain in older persons will be described in the article.

[Futility in geriatric medicine, a real issue]. / La futilité en médecine gériatrique, un véritable enjeu.

Is futility age related? Several studies clearly demonstrate that outcome in critically ill elderly patients admitted to an intensive care unit, is more closely related to severity of illness than to age, which has little influence on prognosis. The outcome is closely associated with the severity of the illness, and age is of little influence. However, age based discrimination persists despite current recommendations from medical societies that age should not be used as a criteria for admission to intensive care. The concept of medical futility is influenced by individual or collective subjective values. Very old patients often are excluded from studies. It is difficult to apply evidence-based medicine in older people as results must be extrapolated from data in younger subjects. Thus, the true benefit of treatment is difficult to assess in the elderly. The image of the older patient, as perceived by younger health care professionals and society has a considerable impact on medical care. Medical futility is often based on clinical concepts which may lead to legal policies. It is influenced by social and economic factors. Health care professionals have a crucial role but their position, in close proximity to the patient, and its resulting emotional burden can be uncomfortable. In geriatric medicine, there is a special relationship between patients, relatives, and health professionals which requires genuine communication in order to optimise patients case. In conclusion, a balanced approach that avoids both overtreatment and therapeutic nihilism is important in order to provide old patients the best possible care.

Sleep disordered breathing in the elderly.

Sleep disordered breathing (SDB), i.e., obstructive, central or mixed sleep apneas, has been recognized as a common occurrence in the elderly. Aging is per se associated with a decrease in the quality of sleep; SDB may further disrupt the sleep architecture in older subjects. The prevalence of obstructive sleep apnea (OSA) increases with aging; available studies report prevalence rates of 11-62%. Furthermore, OSA has been associated with increased mortality in older adults. Central apneas and periodic breathing occur with increased frequency either in subjects with neurological disorders such as infarction, tumor, sequelae of infection, diffuse encephalopathies, or in chronic heart failure. Patients with cerebrovascular disease (stroke, or transient ischemic attacks) have a markedly high prevalence of SDB, mainly OSA. In these patients, SDB is associated with a poorer functional prognosis at 3 and 12 months after the acute event, and a higher mortality. The clinical impact of SDB on cognitive function appears to be modest in patients without dementia, although there is a moderate increase in daytime sleepiness. In Alzheimer's disease (AD) however, SDB occurs more frequently than in non-demented older subjects, and its severity is correlated with the degree of cognitive impairment. The hypothesis of a causal relationship between AD and SDB remains a subject of controversy. The possibility of SDB should be considered in the elderly in the differential diagnosis of "reversible dementias", increased daytime sleepiness, or unexplained right-sided heart failure.

[Respiratory sleep disorders in the elderly]. / Troubles respiratoires liés au sommeil chez la personne âgée.

Ageing is often associated with a decrease in the quality of sleep. In older subjects, sleep-related breathing disorders (SRBD) are increasingly recognized as being responsible for alterations in the quality of sleep. The prevalence of obstructive sleep apnea (OSA) increases with ageing; despite sometimes major disturbances in sleep structure, clinical symptoms are often subtle in this age group. Central apnea and periodic breathing, also more frequent in older subjects, most often occur in patients suffering either from neurological problems (such as tumors, brain infarcts, sequelae of infection, diffuse encephalopathies) or moderate to severe heart failure. In fact, patients suffering from cerebro-vascular diseases (such as brain infarcts or transient ischemic attacks) have a higher prevalence of SRBD than a control age-matched population. In these patients, SRBD are associated with a poorer prognosis in terms of functional recovery and survival. The clinical impact of SRBD on cognitive function appears to be modest in patients without dementia, albeit for a slight increase in daytime somnolence. However, in patients suffering from Alzheimer's disease, SRBD occur more frequently than in non-demented subjects, and indexes of severity of SRBD have been correlated with the importance of cognitive impairment. The hypothesis of a causal relationship between SRBD and the degree neuropsychological impairment in either Alzheimer's disease or multi-infarct dementia remains a matter of controversy. SRBD should be considered as a possible cause of "reversible dementia" and sought for in the presence of daytime somnolence, delirium, or unexplained right-sided heart failure in older patients.