A patient's request for euthanasia entails a complex process that demands emotional work by all participants. It is characterised by an intensive period of sharing information, relationship building and negotiation in order to reach agreement. We hypothesise that making decisions about euthanasia demands a proactive approach towards participants' preferences and values regarding end of life, towards the needs of relatives, towards the burden placed on physicians and a careful attention to shared decision-making. Future research should address the communicational skills professionals require for such complex decision-making.
Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become 'unbearable'. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future.
There is no generally accepted definition of 'unbearable suffering' in the context of a request for EAS. On the basis of the articles reviewed, we propose the following conceptual definition: 'Unbearable suffering in the context of a request for EAS is a profoundly personal experience of an actual or perceived impending threat to the integrity or life of the person, which has a significant duration and a central place in the person's mind'. Further patient-centered qualitative research into suffering is needed to clarify this definition.
The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.
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