The neuropalliative multidisciplinary team—Members and their roles

Brennan, Frank; Gardiner, Matthew D.; Narasimhan, Manisha

doi:10.1016/b978-0-323-85029-2.00010-5

Cited by 5 publications

(4 citation statements)

References 142 publications

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“…The interdisciplinary approach also promotes communication between patients and their healthcare providers, and between various individual healthcare providers and teams [13]. Additionally, palliative care services support the primary and consultant services through ethical and moral issues associated with terminal patient care when management beyond the usual norms of medical practice becomes necessary [14].…”

Section: Structure Of the Palliative Care Teammentioning

confidence: 99%

“…In addition to the management of amyloidosis-related symptoms, palliative care services can facilitate communication within the interdisciplinary team and between the team and the patient and family. The oncologist in charge of the case calls in the palliative care team to work with the primary and consulting clinical teams in dealing with ethical issues associated with a progressive illness and its associated burdens on the patient and caregivers [13,14], advocating for a collaborative holistic approach directed towards QOL [82,83]. In general, the frequency and early onset of serious complications in AL amyloidosis warrant early involvement of the palliative care team.…”

Section: Integrating Palliative Care Into the Management Of Al Amyloi...mentioning

confidence: 99%

“…Throughout this process, the palliative care team also helps and supports the primary and consulting teams in coping with ethical and moral distress associated with progressive illness [13,14]. In AL amyloidosis, where multiple clinical teams are involved, palliative care services can help in maintaining focus on the overall impact of care on the patient, advocating for a collaborative holistic approach directed towards QOL [82,83].…”

Section: Integrating Palliative Care Into the Management Of Al Amyloi...mentioning

confidence: 99%

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Role of Palliative Care in the Supportive Management of AL Amyloidosis—A Review

Habib,

Tiger,

Dima

et al. 2024

JCM

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Light chain amyloidosis is a plasma–cell disorder with a poor prognosis. It is a progressive condition, causing worsening pain, disability, and life-limiting complications involving multiple organ systems. The medical regimen can be complex, including chemotherapy or immunotherapy for the disease itself, as well as treatment for pain, gastrointestinal and cardiorespiratory symptoms, and various secondary symptoms. Patients and their families must have a realistic awareness of the illness and of the goals and limitations of treatments in making informed decisions about medical therapy, supportive management, and end-of-life planning. Palliative care services can thus improve patients’ quality of life and may even reduce overall treatment costs. Light chain (AL) amyloidosis is a clonal plasma cell disorder characterized by the excessive secretion of light chains by an indolent plasma cell clone that gradually accumulates in vital organs as amyloid fibrils and leads to end-organ damage. With progressive disease, most patients develop diverse clinical symptoms and complications that negatively impact quality of life and increase mortality. Complications include cardiac problems including heart failure, hypotension, pleural effusions, renal involvement including nephrotic syndrome with peripheral edema, gastrointestinal symptoms leading to anorexia and cachexia, complex pain syndromes, and mood disorders. The prognosis of patients with advanced AL amyloidosis is dismal. With such a complex presentation, and high morbidity and mortality rates, there is a critical need for the establishment of a palliative care program in clinical management. This paper provides an evidence-based overview of the integration of palliative care in the clinical management of AL amyloidosis as a means of reducing ER visits, rehospitalizations, and in-hospital mortality. We also discuss potential future collaborative directions in various aspects of clinical care related to AL amyloidosis.

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Section: Structure Of the Palliative Care Teammentioning

confidence: 99%

Section: Integrating Palliative Care Into the Management Of Al Amyloi...mentioning

confidence: 99%

Section: Integrating Palliative Care Into the Management Of Al Amyloi...mentioning

confidence: 99%

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Role of Palliative Care in the Supportive Management of AL Amyloidosis—A Review

Habib,

Tiger,

Dima

et al. 2024

JCM

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“…This is ideally delivered by an integrated team through shared decision-making and a person-centred focus [30][31][32]. Medical care is typically provided by a neurologist, but palliative care physician, rehabilitation specialist or geriatrician medical care has been reported [33]. Working within such a team requires all team members to acquire additional skills; some are cross-disciplinary.…”

Section: The Neurologist Within the Multidisciplinary Teammentioning

confidence: 99%

The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis

Berlowitz,

Mathers,

Hutchinson

et al. 2023

Breathe

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Motor neurone disease/amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder with no known cure, where death is usually secondary to progressive respiratory failure. Assisting people with ALS through their disease journey is complex and supported by clinics that provide comprehensive multidisciplinary care (MDC).This review aims to apply both a respiratory and a complexity lens to the key roles and areas of practice within the MDC model in ALS. Models of noninvasive ventilation care, and considerations in the provision of palliative therapy, respiratory support, and speech and language therapy are discussed. The impact on people living with ALS of both inequitable funding models and the complexity of clinical care decisions are illustrated using case vignettes. Considerations of the impact of emerging antisense and gene modifying therapies on MDC challenges are also highlighted.The review seeks to illustrate how MDC members contribute to collective decision-making in ALS, how the sum of the parts is greater than any individual care component or health professional, and that the MDCper seadds value to the person living with ALS. Through this approach we hope to support clinicians to navigate the space between what are minimum, guideline-driven, standards of care and what excellent, person-centred ALS care that fully embraces complexity could be.Educational aimsTo highlight the complexities surrounding respiratory care in ALS.To alert clinicians to the risk that complexity of ALS care may modify the effectiveness of any specific, evidence-based therapy for ALS.To describe the importance of person-centred care and shared decision-making in optimising care in ALS.

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