The causes of death in patients with neurodegenerative diseases are important information for patients and relatives because misleading information causes additional burdens. Early and frank discussion about disease progression, the causes of death, and end-of-life decisions might support the patient’s and family’s acceptance of the dying process and also helps physicians to frame treatment goals more explicitly. These goals include the place of death as well as medication administered at the end of life. The Liverpool Care Pathway provides a useful tool to standardize the care at the end of life that contributes to individual decisions and care plans. The prescription of medication at the end of life in various neurodegenerative diseases differs from treatment during the earlier phases of the diseases, not only because of swallowing difficulties but also in terms of symptom control.
Patients with chronic neurologic disorders suffer from the burden of disease progression without the hope for a cure. Therefore, symptom management and palliative care approaches should be included from the beginning of the illness. Palliative care aims at improving a patient’s quality of life by alleviating suffering due to physical, psychosocial, and spiritual factors. Since no curative and only limited life-prolonging treatment options are available for most chronic neurologic disorders, a palliative care approach can help to create a treatment plan that considers all aspects of the disease. We have provided palliative care approaches for the most common neurodegenerative disorders like dementia, multiple sclerosis, Parkinson’s disease, and amyotrophic lateral sclerosis. A palliative approach to neurologic disorders does not simply mean limiting treatment and focusing on pain. Instead, the whole unit of care, consisting of the patient, relatives, and caregivers, should be perceived with all their needs.
The causes of death in patients with neurodegenerative diseases are important information for patients and relatives because misleading information causes additional burdens. Early and frank discussion about disease progression, the causes of death, and end-of-life decisions might support the patient’s and family’s acceptance of the dying process and also helps physicians to frame treatment goals more explicitly. These goals include the place of death as well as medication administered at the end of life. The Liverpool Care Pathway provides a useful tool to standardize the care at the end of life that contributes to individual decisions and care plans. The prescription of medication at the end of life in various neurodegenerative diseases differs from treatment during the earlier phases of the diseases, not only because of swallowing difficulties but also in terms of symptom control.
Patients with chronic neurologic disorders suffer from the burden of disease progression without the hope for a cure. Therefore, symptom management and palliative care approaches should be included from the beginning of the illness. Palliative care aims at improving a patient’s quality of life by alleviating suffering due to physical, psychosocial, and spiritual factors. Since no curative and only limited life-prolonging treatment options are available for most chronic neurologic disorders, a palliative care approach can help to create a treatment plan that considers all aspects of the disease. We have provided palliative care approaches for the most common neurodegenerative disorders like dementia, multiple sclerosis, Parkinson’s disease, and amyotrophic lateral sclerosis. A palliative approach to neurologic disorders does not simply mean limiting treatment and focusing on pain. Instead, the whole unit of care, consisting of the patient, relatives, and caregivers, should be perceived with all their needs.
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