The significance of palliative care extends far beyond ‘end-of-life treatment’

XIII WCN 2017, Kyoto, Japan, 16-21 September 2017

At the World Congress for Neurology in Kyoto, experts are discussing the growing significance of palliative medicine in neurological practice. Studies show that this form of care not only helps patients to cope better with their symptoms and problems but also with their family and caregivers.

Kyoto, September 2017 – “The significance of palliative care extends far beyond ‘end-of-life treatment’ for cancer patients,” Secretary General of the World Federation of Neurology (WFN) Prof Wolfgang Grisold emphasizes at the occasion of XXIII World Congress for Neurology in Kyoto. There are a number of important areas for palliative care precisely in neurology and a steadily growing demand for it – not least due to ever higher life expectancy rates worldwide.

Prof Grisold explains this aspect citing the example of patients with glioblastoma: “With this progressive disease, the need for palliative care continuously increases. It is difficult to say for sure the point in time at which palliative care need so be initiated. Experience shows that elements of palliative medicine are employed and above all, prepared early on in the course of the disease, even during oncological treatment.”

The symptoms are diverse and can take on very different forms individually. Cognitive deterioration, seizures, localization-related brain-organic signs such as pareses worsen nausea, vomiting, tiredness and fatigue; mental and psychiatric manifestations can also occur. As the tumor progresses, the palliative care becomes ever more significant. From a certain stage onward, it is even more important than the oncological therapy and neurological rehabilitation.

Glioblastoma is the most common high grade primary brain tumour in adults and the most frequent type of tumor specific to the brain. Despite intensive research and improved treatment approaches, there has been no success in prolonging the survival period of affected patients. It is all the more important, according to Prof Grisold, that care has been improved and expanded with the addition of palliative approaches. The end-of-life aspect is a matter unto its own. “In this short phase, there is intensive interaction among patients, caregivers, and the family,” Prof Grisold notes. “Multi-professional case management, usually coordinated by palliative caregivers, helps everyone involved to orient themselves and to cope with social aspects. Many ethical and local or regional aspects must be considered as well.”

It is attributable to the growing interest in the subject worldwide and its increasing significance that a special session at the World Congress was devoted to palliative neurology and its important role. There is hardly another medical field where there are so many progressive diseases that cannot be cured but at most slowed down and accompanied by optimum therapies.

These diseases include, on the one hand, chronic degenerative diseases such as dementia or ALS; on the other hand, progressive states of chronic diseases such as for example MS, or acute severe diseases requiring palliative care. In terms of time periods, palliative approaches can be of short duration, for instance severe concussions without improvement, or they may be needed as accompanying measures for years, such as for many degenerative diseases. Prof Grisold: “The need to incorporate palliative approaches in neurological care is obvious. The overriding premise must always be to address the very different individual needs of patients as much as possible and to retain their subjective quality of life as effectively as possible.”

Palliative care approaches are just as important as acute treatment. Palliation is still sometimes seen as the end of treatment or as a “failure” of medicine. Prof Grisold calls this faulty reasoning, noting: “Disease processes ultimately transition into a terminal phase in different ways. Of course, the choice of palliative approach must be well-founded and balanced, as with any other medical decision. Many practical and ethical issues are involved here, for instance, how to give consideration to special cultural factors, or how to ensure the integration of the patient’s will and desires and any patient provisions such as advance care directives.”

Even if there is no generally valid concept for the optimum use of palliative medicine, experts have in any case been able to devise fundamental approaches for this type of care. The European Association for Palliative Care (EAPC) and the European Academy of Neurology (EAN), for instance, recently presented a joint consensus paper about general palliative care in the field of neurology. And this summer, the European Association for Neuro-Oncology (EANO) published guidelines for palliative care of adults with glioma.

These publications emphasize that starting palliative treatment as early as possible and taking a multidisciplinary approach can improve not only the symptoms but also the psychological problems involved. This is true not at least for caregivers as well, not only professional ones but also relatives adopting that role. Prof Grisold: “The role of a multiprofessional team and the care they give are becoming increasingly significant. The stresses and strains lead not only to impaired quality of life but, without adequate support, also to depression.” All palliative approaches must likewise incorporate care for the caregivers, covering among other things, working through the grief and pain caused by the patient’s death.


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