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Palliative and end-of-life care

6 important questions on Palliative and end-of-life care

Psychological distress at the end of life

- psychological distress is common in people reaching the end of life
- these problems (with patient and family) often remain undetected and under-treated
* lack of awareness/skill differentiating distress from appropriate sadness
* normalisation of distress by patients
* assessment can be a challenge (physical symptoms are also used to diagnose depression)
- depression and anxiety are potentially treatable, but untreated distress has an impact on quality of life, physical symptoms such as pain, physical functioning, role and social functioning and on families
- limited studies focused on end of life (treatment of psychological distress includes medication, supportive psychotherapy and patient and family education)

SPiritual and existential distress

Spiritual and existential issues can have an important impact on the well-being of people reaching the end of life, for example, finding a sense of purpose and meaning in life and in an illness is associated with an ability to tolerate psychosocial symptoms and satisfaction with QOL

- there are many definitions of spirituality (92!! definitions were identified in a comprehensive review of literature)
- the construct is broader than religion
- proefschrift Sjaak Korver (spirituele coping bij longkanker patienten)

Research in end of life setting

- convential therapies may have limited applications for patients who are dying
- relatively few RCTs to provide evidence
- challenges for research in this field
* recruitment
* attrition (uitval)
* data-analyses
* follow-up assesment
* confounding variables (many symptoms)
* operationalisatie uitkomsten (zie ook RCT dignity)

Carers of dying people

- predominantly female, older and spouses
- caregiving can be very demanding
* sense of imminent loss
* demands of caring for a patient with unpredictable and high dependency needs
- many carers regard caregiving as normal part of reciprocal relationships (do not identify with label 'carer')

Advance care planning

- plan your future end-of-life care
- also called 'living will': make advance decision to refuse certain treatment before you lose capacity to do so
- discussion impact on:
*concerns
* values/personal goals of care
* understanding illness and prognosis
* preferences for type of care

- not only important for patient choice
- also for open dialogue between care providers and patients and family

- NB: timing of discussion of advance care planning is important (niet direct bij diagnose of tijdens actieve behandeling)

RCT early palliative care

- the findings of this cluster-randomised trial of 461 outpatients with a wide range of advanced cancer diagnoses suggest that early palliative care might be beneficial for patients with a wide range of advanced solid tumor malignancies
- such a collaborative approach between oncology and palliative care differs from the traditional view of palliative care services being used only at the very end of life, and is increasingly endorsed in oncology guidelines