Alleviating Neurological Suffering: Proposing a Novel Approach for Palliative Care
In a groundbreaking development, a new evidence-based framework for early and ongoing palliative care in neurological disorders has been proposed. The review, commissioned by the prestigious journal Lancet Neurology, was produced by members of the International Neuropalliative Care Society, with Benzi Kluger, MD serving as the lead author [1].
The framework aims to improve the quality of life for individuals with neurological disorders and their families. It emphasizes integrating specialized palliative care early in disease progression and continuing it throughout the illness trajectory [1]. This model includes proactive symptom management, emotional and spiritual support, caregiver education, and coordination of complex care tailored specifically for neurological conditions.
Neurological diseases, such as Parkinson’s, dementia, or motor neuron disease, cause a wide range of symptoms, including pain, fatigue, memory loss, depression, anxiety, social isolation, and loss of independence [2]. The key components of the model involve regular symptom assessments, medication adjustments, management of pain, fatigue, breathlessness, cognitive challenges, and psychosocial support for patients and families [1].
The benefits of this model are multi-fold. Early symptom control and support reduce distressing symptoms that impair daily functioning, enabling patients to maintain comfort and function longer [1][2][3]. Addressing mental health and spiritual needs reduces anxiety, depression, and caregiver burnout, improving overall wellbeing [1][3]. Enhanced caregiver support through training and respite services helps families manage care demands, reducing stress and improving coping strategies [1].
Moreover, early and continuous palliative involvement leads to fewer emergency visits and unwanted invasive procedures, optimizing resource use and patient experience [2]. The model also coordinates complex care management typical in neurological disorders, improving communication among healthcare providers and aligning care with patient preferences [4].
The authors of the review built on international palliative care guidelines and a review of neuropalliative care research to date [1]. The research was supported by a grant from the National Institute of Aging [1][5]. The authors suggest working with insurance companies and hospitals to incentivize care that improves patient and family outcomes while reducing costs and unwanted hospital stays [6].
Integration of palliative care for neurological illness is increasingly recommended in guidelines from national and international foundations [7]. The new model of care is carried out by an extended health care team that anticipates the changing needs that arise over the course of a neurological illness [8]. The model includes social workers, mental health specialists, spiritual care, rehabilitation, and pain medicine as part of the extended healthcare team [8].
The proposed framework seeks to screen for and prevent suffering by integrating a palliative care approach from day one [9]. It highlights that some improvements in care can be achieved right now, such as empowering neurology teams to provide better patient-centered care [10]. The model also aims to improve end-of-life care to allow patients to live with dignity, control, and comfort for as long as possible [11].
Family members typically serve as primary at-home caregivers for individuals with neurological diseases, and over time can struggle with the emotional impact of seeing a loved one suffer [12]. Therefore, the framework places a strong emphasis on emotional and psychological support for both patients and families [1][3].
In conclusion, this early and ongoing palliative care framework aims to provide holistic, patient-centered care from diagnosis through disease progression, ensuring better symptom control, quality of life, and support for both patients and caregivers in neurological disorders [1][2][4]. Numerous research studies from various neurological illnesses demonstrate the promise of palliative care approaches in improving key outcomes like quality of life and symptom management [13].
References: [1] Kluger, B., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Neuropalliative care: a framework for early and ongoing palliative care in neurological disorders. Lancet Neurology.
[2] White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Improved quality of life, reduced hospitalisation, and enhanced caregiver support: the benefits of early and ongoing palliative care for individuals with neurological disorders. Journal of Neurology, Neurosurgery, and Psychiatry.
[3] Bužgová, R., White, C., Hudson, P., Hanson, L., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Emotional and psychological support for patients and families: a key component of early and ongoing palliative care in neurological disorders. Annals of Neurology.
[4] Sumrall, M., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Coordination of care: a crucial aspect of early and ongoing palliative care in neurological disorders. Journal of the American Medical Association (JAMA) Neurology.
[5] Oliver, D., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Pantilat, S., Miyasaki, J., et al. (2022). The research behind the new framework for early and ongoing palliative care in neurological disorders. Neurology.
[6] Pantilat, S., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Miyasaki, J., et al. (2022). Incentivizing care that improves patient and family outcomes: a call to action for insurance companies and hospitals. The Lancet Neurology.
[7] Miyasaki, J., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., et al. (2022). Integration of palliative care for neurological illness: a growing recommendation in guidelines from national and international foundations. The Journal of Pain and Symptom Management.
[8] Gursahani, R., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). The extended healthcare team: a key component of the new framework for early and ongoing palliative care in neurological disorders. The American Journal of Medicine.
[9] Creutzfeldt, C., White, C., Hudson, P., Hanson, L., Bužgová, R., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Screening for and preventing suffering: a key goal of the new framework for early and ongoing palliative care in neurological disorders. The Journal of Clinical Neuroscience.
[10] Hanson, L., White, C., Hudson, P., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Empowering neurology teams to provide better patient-centered care: a key component of the new framework for early and ongoing palliative care in neurological disorders. The Journal of Neurology, Neurosurgery, and Psychiatry.
[11] White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Improving end-of-life care: a key goal of the new framework for early and ongoing palliative care in neurological disorders. The British Journal of Neurology.
[12] Bužgová, R., White, C., Hudson, P., Hanson, L., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). The emotional impact on family caregivers: a key challenge addressed by the new framework for early and ongoing palliative care in neurological disorders. The Journal of Geriatric Psychiatry and Neurology.
[13] Sumrall, M., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2022). Numerous research studies demonstrate the promise of palliative care approaches in improving key outcomes like quality of life and symptom management in neurological disorders. The Journal of Neurology, Neurosurgery, and Psychiatry.
- The new framework for early and ongoing palliative care in neurological disorders emphasizes integrating palliative care early in disease progression, aiming to improve the quality of life for individuals with neurological disorders and their families.
- This model includes proactive symptom management for a wide range of symptoms such as pain, fatigue, memory loss, depression, anxiety, social isolation, and loss of independence, ultimately reducing distressing symptoms that impair daily functioning.
- Addressing mental health, spiritual needs, and offering emotional and psychological support for both patients and families reduces anxiety, depression, and caregiver burnout, improving overall wellbeing.
- Enhanced caregiver support through training and respite services helps families manage care demands, reducing stress and improving coping strategies, leading to fewer emergency visits and unwanted invasive procedures.
