Palliative Care in Amyotrophic Lateral SclerosisPalliative care in amyotrophic lateral sclerosis
Section snippets
Who is Involved in Palliative Care?
Palliative care in patients with ALS involves not only physicians but also a large number of different professionals (Table 2) and family members, for whom caring for the patient often becomes a full-time job. The physician's role is to coordinate the efforts and discuss the appropriate time for each intervention with the patient and family. In the United Kingdom, at least 75% of the inpatient palliative care/hospice units are involved in the care of patients with ALS.60 This figure is lower
Breaking the News
Palliative care begins by how the diagnosis is communicated to the patient.21 If the communication between physician and patient is inadequate, the patient will be left uncertain about the diagnosis, with a vague sense that he/she has some serious and probably incurable disease without any reasonable hope for the future.57 Often, such a situation leads to a pilgrimage from one doctor to another and from one hospital to another, until a physician establishes a good therapeutic relationship with
Weakness
Progressive weakness is the major symptom of ALS. Initially, patients find their stamina undergoes greater than usual day-to-day fluctuations, and they need to be reassured that this is a normal phenomenon and does not herald an increase in pace of disease progression. Active and passive physiotherapy can help in the prevention of muscle contractures and joint stiffness. The maximum exercise load may vary greatly from one day to another; as a rule, patients should never exercise to the point of
Psychologic Problems
Most, if not all, patients with ALS undergo a phase of reactive depression after diagnosis. Counseling is of paramount importance at this stage. The reported prevalence of depression in ALS varies depending on the assessment method. Although full-fledged major depression, according to Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) criteria is infrequent (around 10%), self-reported depressive symptoms have been described in 44% to 75% of patients.24, 81 Clinically
Quality of Life in ALS
The dilemma of quality of life (QOL) in patients with ALS begins with its definition. The definition followed here is that of Professor Ciaran O'Boyle, of Dublin, who said “Quality of life is whatever the patient says it is.”58 Professor O'Boyle developed a QOL measure based on patient-generated cues, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQOL-DW). In a randomized study,53 this scale was judged by patients with ALS as being more valid (i.e.,
Psychosocial Care
In palliative care, as defined by the WHO, “the control of psychological, social, and spiritual problems is paramount.”80 Psychosocial care is often the most important cornerstone of palliative care in ALS and cannot be administered by physicians alone. A multi-disciplinary team approach is necessary, as has been exemplified by several excellent models of care around the world.34 Palliative care in patients with ALS involves a number of different professions (see Table 2). Close collaboration
Spiritual Care and Bereavement
As with any terminal illness, spiritual care is an important but often overlooked part of palliative care. The word spiritual has several implications and is difficult to define. Sykes76 defines it as “the need to find within present existence a sense of meaning,” which may or may not involve a religious framework. A recent study indicates that spirituality or religiousness may affect the use of PEG and NIV in ALS and may be a source of comfort to the patients.51 Cases of patients whose
Terminal Phase
A retrospective survey of 171 patients with ALS showed that around 90% of the patients died peacefully, mostly in their sleep, and none of the patients choked to death.52 If patients with ALS are not artificially ventilated, the death process usually begins with the patients slipping from sleep into coma because of increasing hypercapnia. In this phase of the disease, efforts are directed solely at maintaining patient comfort.77 If restlessness or signs of dyspnea develop, morphine should be
Summary
Patients with ALS witness their progressing debilitation with a clear mind. This situation is regarded as a nightmare by most neurologists; however, the intact mentation offers patients with ALS the possibility to develop coping mechanisms that can lead to a surprisingly serene acceptance of the disease. Indeed, most professionals dealing with patients with ALS and their families would agree that they are often exceptionally pleasant and warm people. This observation, although unexplained, is
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Use of non-invasive ventilation in patients with amyotrophic lateral sclerosis
2022, Neurologia ArgentinaThe neuropalliative multidisciplinary team—Members and their roles
2022, Handbook of Clinical NeurologyCitation Excerpt :Other features of those attending the ALS MDT were that they were more likely to receive percutaneous endoscopic gastrostomy (PEG) tube placement and more likely to receive noninvasive ventilation (NIV), resulting in 330 days longer survival. When patients are managed by Palliative Care teams, studies have shown improved symptom control in MS (Edmonds et al., 2010) and ALS/MND (Borasio et al., 2001). Those “fast-tracked” to Palliative Care reported improvement in five key symptoms, while the standard referral group had a further deterioration in symptoms.
Laser and somatosensory evoked potentials in amyotrophic lateral sclerosis
2016, Clinical NeurophysiologyCitation Excerpt :We considered that sensory loss (i.e., hypoesthesia) due to the neurodegenerative process in ALS dominated the clinical picture instead of hyperesthesia, allodynia, or neuropathic pain following peripheral and/or cortical sensitisation processes as commonly seen in distal symmetric polyneuropathies. So, as was also suggested by Borasio et al. (2001), the pain in ALS patients could be attributed to musculoskeletal origin rather than a neuropathic pain. Yet, since our observations in this study showed considerable involvement of A-delta sensory fibres in ALS, a neuropathic origin for the pain of ALS patients could not totally be ruled out.
Palliative care in non-malignant disease
2015, Medicine (United Kingdom)Amyotrophic Lateral Sclerosis and Pain: A Narrative Review from Pain Assessment to Therapy
2024, Behavioural NeurologyPain in amyotrophic lateral sclerosis: a narrative review
2022, Journal of Yeungnam Medical Science
Address reprint requests to, Gian Domenico Borasio, MD, Department of Neurology and, Interdisciplinary Palliative Care Unit, Munich University Hospital-Grosshadern, D-81366 Munich, Germany