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.
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.
The patient's well-being often depends on caregivers, so their needs also have to be regularly assessed for both their own good and the patient's. Healthcare professionals can help alleviate emotional exhaustion through education, support, and supervision. And once the patient has died, caregivers need emotional support.
Near the end of life, patients' physical and cognitive states will be changing, and so may their preferences. Thus, continued and repeat discussions are in order, encouraging open discourse on the dying process, possibly including a wish for a hastened death, and preferences for a place of death.
Healthcare professionals and caregivers must be able to recognize triggers for discussion and signs of deterioration that signal the dying phase, which will allow appropriate interventions and support. Existing published care pathways may be useful.
Triggers for end-of-life care for progressive neurologic conditions include a patient or family request, dysphagia, cognitive decline, dyspnea, repeated infections, and weight loss.
In the few months before death, important triggers are a marked decline in physical condition and aspiration, often resulting in pneumonia.
Need for Education and Training
The consensus paper recommends training and continuing education of neurologists in palliative care principles, the multidisciplinary palliative care assessment, and knowing when to refer to specialist palliative care.
Similarly, palliative care specialists should understand and receive continued education about neurologic symptoms. All professionals caring for patients with progressive disease should receive education, support, and supervision to reduce the risk for their own burnout, the document notes.
Plans are for the paper to be published in the European Journal of Neurology and in the European Journal of Palliative Care, as well as to include the topic of palliative care in other guidelines.
The development of the consensus paper was not commercially funded. Dr. Oliver has disclosed no relevant financial relationships.
24th Meeting of the European Neurological Society (ENS). Presented June 1, 2014.
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Cite this: New European Consensus on Palliative Care in Neuro Disease - Medscape - Jun 03, 2014.