Palliative medicine
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Palliative medicine · Sep 2015
Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews.
Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring. ⋯ Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans.
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Palliative medicine · Sep 2015
ReviewDignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review.
A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance. ⋯ Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement.
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Palliative medicine · Sep 2015
Multicenter StudyThe desire to hasten death: Using Grounded Theory for a better understanding "When perception of time tends to be a slippery slope".
Some patients with advanced and progressive diseases express a desire to hasten death. ⋯ The desire to hasten death may be used as an extreme coping strategy to maintain control against anticipated agony. Patients expected health professionals to listen to and respect their experiences. Emerging hypotheses included the following: (a) patients try to balance life time and anticipated agony, and the perception of time is distressing in this balancing act; (b) anticipated images of agony and suffering in the dying process occur frequently and are experienced by patients as intrusive; (c) patients expressing a desire to hasten death are in need of more information about the dying process; and (d) patients wanted their caregivers to listen to and respect their wish to hasten death, and they did not expect the caregivers to understand this as an order to actually hasten their death.
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Palliative medicine · Sep 2015
Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers.
Despite media and academic interest on assisted dying in dementia, little is known of the views of those directly affected. ⋯ Health workers should be mindful of the holistic experience of dementia at the end of life. The psychological and existential aspects of suffering should be addressed, as well as relief of physical pain. Further research is required.