The impact of COVID-19 on palliative care for people with Parkinson’s and response to future pandemics

Abstract

Introduction: Although in some countries, palliative care (PC) still remains poorly implemented, its importance throughout the course of Parkinson's disease (PD) is increasingly being acknowledged. With an emergence of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) pandemic, growing emphasis has been placed on the palliative needs of people with Parkinson's (PwP), particularly elderly, frail, and with comorbidities. Areas covered: The ongoing COVID-19 pandemic poses an enormous challenge on aspects of daily living in PwP and might interact negatively with a range of motor and non-motor symptoms (NMS), both directly and indirectly -as a consequence of pandemic-related social and health care restrictions.Here, the authors outline some of the motor and NMS relevant to PC, and propose a pragmatic and rapidly deployable, consensus-based PC approach for PwP during the ongoing COVID-19 pandemic, potentially relevant also for future pandemics. Expert opinion: The ongoing COVID-19 pandemic poses a considerable impact on PwP and their caregivers, ranging from mental health issues to worsening of physical symptoms -both in the shortand long-term, (Long-COVID) and calls for specific, personalized PC strategies relevant in a lockdown setting globally. Validated assessment tools should be applied remotely to flag up particular motor or NMS that require special attention, both in short-and long-term.

A Peek into Pandora’s Box: COVID-19 and Neurodegeneration

“…In addition to the direct adverse effects of SARS-CoV-2, the restrictive measures enforced due to COVID-19 such as home confinement and social distancing negatively impacted the general health and well-being of all individuals causing depression, anxiety and stress, and worsened the neuropsychiatric outcomes for AD patients [ 184 , 185 , 186 , 187 , 188 ]. Studies have shown that isolation and reduction in mobility increased psychological stress and produced an impairment of motor and nonmotor symptoms in PD patients [ 189 , 190 , 191 , 192 ]. There is also a prevalence of post-traumatic stress disorder (PTSD) among COVID-19 survivors and care givers [ 165 , 193 , 194 , 195 , 196 ].…”

Parkinson's disease and Covid-19: Is there an impact of ethnicity and the need for palliative care

“…Palliative care (PC) seeks to improve quality of life of patients, their families and caregivers through the prevention and relief of medical symptoms, while, at the same time, emphasizing their emotional needs and spiritual wellbeing, establishing goals of care, and engaging in the advance care planning (ACP) ( Kluger & Quill, 2021 ; Miyasaki & Robinson, 2020 ). The PC interventions are holistic and “patient-centered,” rather than “disease-centered,” and exerted through a multidisciplinary approach, while actively integrating patients’ values and prioritizing the symptoms according to the patient's preferences ( Quill & Abernethy, 2013 ) ( Chaudhuri et al, 2021 ). Although, historically, PC equaled a hospice tradition (defined as PC for individuals with a 6-month life expectancy), delivered only at the end of life, its role has increasingly been expanding and over the past decade the PC interventions are increasingly being delivered at earlier stages of the disease, alongside disease directed treatments in an outpatient setting ( Kluger et al, 2020 ; Quill & Abernethy, 2013 ).…”

“…People with Parkinson's Disease (PD, PwP) may experience a substantial burden of motor and non-motor symptoms, both major determinants of the health-related quality of life (QoL), that may not be sufficiently tackled by a traditional model of care (a chronic illness model focused on motor symptoms and delivered through a patient–physician dyad) ( Boersma et al, 2016 ; Chaudhuri et al, 2021 ; Rukavina et al, 2021 ). Gaps have also been indentified specially related to mental health issues unmasked during the Covid-19 pandemic ( Subramanian et al, 2021 ).…”

Moving Forward from the COVID-19 Pandemic: Needed Changes in Movement Disorders Care and Research

“…We must also help patients and caregivers build their armamentarium of self-management tools and skills. This may include developing programs to help patients strengthen coping strategies, manage anticipatory grief [ 62 ], adapt their lifestyles to changes from PD, enhance adherence to medical treatment, and process emotions resulting from living with a chronic disease [ 12 ]. Targeted education for caregivers may improve self-management and self-efficacy, as well [ 55 ].…”