New European Consensus on Palliative Care in Neuro Disease

Daniel M. Keller, PhD
June 03, 2014

ISTANBUL, Turkey — A new consensus paper for palliative care for patients with progressive neurologic disease emphasizes the special needs of these patients and how neurologists and palliative care specialists can work together to fulfil them.

One of the authors, David Oliver, BSc, FRCP, FRCGP, geriatrician at Wisdom Hospice and consultant in palliative medicine at the University of Kent, United Kingdom, said that for progressive and disabling neurologic diseases without curative treatment, palliative care aims to relieve pain and other distressing symptoms and to affirm life while regarding dying as a normal process. It should neither hasten nor postpone death and should integrate the psychological and spiritual aspects of patient care.

The paper, presented here at the 24th Meeting of the European Neurological Society (ENS), is the product of a joint effort of the European Federation of Neurological Societies and the European Association for Palliative Care. In the face of little evidence-based information in this area, the joint task force decided to issue what it called a consensus document “based on the available evidence” rather than a guideline.

One aim was to develop a curriculum for both palliative medicine and neurology that assures the inclusion of a palliative care approach, with advance care planning, family support, caregiver support, bereavement care, triggers for palliative care interventions, and end-of-life care.

Early Initiation
The traditional model of palliative care has been to deliver strictly medical care up to a point and then turn the situation over to a palliative care specialist or team. This model evolved into an overlapping integration of the medical and the palliative, with medical involvement decreasing over time as palliation increases.
The paper that was just announced features a more dynamic model in which both medical and palliative care specialists provide ongoing care as needed based on trigger points as they arise.

In cases of progressive neurologic disease, “palliative care should be considered early in the disease trajectory, depending on the underlying diagnosis,” Dr. Oliver advised. For example, amyotrophic lateral sclerosis will have a shorter trajectory than the more prolonged course of multiple sclerosis. Early planning can ensure that the patient is fully involved if there is a risk that cognitive and communication abilities will become impaired.

He said communication should be open and should set goals and therapy options. One structured model for delivering bad news is SPIKES: a Setting for the discussion, assessing the patient’s Perception, obtaining the patient’s Invitation for the discussion, giving Knowledge and information to the patient, addressing the patient’s Emotions with Empathic responses, and Summarizing and developing a Strategy.

Good care requires a multidisciplinary team approach providing specialist palliative care involving a physician, nurse, social worker, and psychologist or counselor, each of whom does his or her own particular assessment.
Symptom management involves physical symptoms but also psychosocial issues. “This is where it is as important for palliative care physicians to know about neurology as for neurologists to know about palliative care,” Dr. Oliver stated. The former need to be able to continually assess neurologic symptoms, and the latter need to know when a palliative intervention is called for.