Place of death in Parkinson's disease and related disorders in England and Wales: post-pandemic trends and implications for care planning.

BACKGROUND: With growing emphasis on palliative care for neurodegenerative conditions, understanding trends in place of death helps improve quality of end-of-life care for people with Parkinson's disease and related disorders (PDRDs), focusing allocation of resources and training and identifying inequalities. OBJECTIVES: Review national and regional place of death trends for people with PDRD including pre- and post-pandemic trends. METHODS: Mortality data for England and Wales (March 2018 and July 2022) were analysed with summary statistics and interrupted time series, exploring place of death for those who died with PDRD, with and without coexisting dementia, with reference to all deaths in England and Wales. RESULTS: Of 2,415,566 adult deaths, 56,790 included mention of PDRD. Hospital deaths were most common in people with PDRD (39.17%), followed by care homes (38.84%). People with PDRD were half as likely to die in hospice compared with the general population (2.03 vs 4.94%). Proportion of care home deaths fell significantly after March 2020 (40.6-37%, P = 0.035). Regionally, London was an outlier with a lower proportion of deaths occurring in care homes with a higher proportion of hospital deaths. CONCLUSION: Place of death for people with PDRD is changing, with more hospice and home deaths. People with PDRD, particularly those with co-existent dementia, are less likely to access inpatient hospice care than the general population. Since the COVID-19 pandemic, the proportion of care home deaths has reduced significantly with an increase in home deaths, with implications for service and resource allocation.

Terminal Care in Parkinson's Disease: Real-Life Use of Continuous Subcutaneous Apomorphine Infusion to Improve Patient Comfort.

BACKGROUND: There are currently no recommendations on the therapeutic management of Parkinson's disease (PD) patients at the end of life. OBJECTIVE: To describe a cohort of patients with PD who benefited from continuous subcutaneous apomorphine infusion (CSAI) initiation at the end of their life as comfort care. METHODS: This real-life cohort includes 14 PD patients, who benefited from 24-h, low-dose CSAI (0.5-3 mg/h) in the context of terminal care. Patient's comfort (pain, rigidity, and/or ability to communicate) and occurrence of CSAI-related side-effects (nausea/vomiting, cutaneous and behavioral manifestations) were evaluated based on medical records. RESULTS: All patients (age 62-94 years, disease duration 2-32 years) presented with late-stage PD and a compromised oral route. Treatment lasted from a few hours to 39 days. CSAI led to substantial functional improvement, with a good safety profile. Overall clinical comfort was deemed improved by the medical team, the patient, and/or caregivers. CONCLUSIONS: CSAI might be a promising approach in PD terminal care, as it reduces motor symptoms and overall discomfort, with an apparent good safety profile. Use of the apomorphine pen, sublingual film or a classic syringe pump might be considered when apomorphine pumps are not available. Larger observational cohorts and randomized controlled trials are needed to establish the efficacy and tolerability of apomorphine in the context of terminal care and more broadly, in an advance care planning perspective.

Transdermal Rotigotine at End-of-Life for Parkinson's Disease: Association With Measures of Distress.

BACKGROUND: End-of-life (EOL) care for Parkinson's disease (PD) can be challenging when oral medications are no longer tolerated. MEASURES: To assess EOL prescribing for people with PD (PWP), focusing on rotigotine dosing and proxy measures of distress: benzodiazepine and opioid use. INTERVENTION: A retrospective audit of patient records from PWP who died between January 2019 and May 2022 at the Royal Hobart Hospital (RHH), Australia, was conducted. Data was systematically collated on demographics, symptoms, levodopa equivalent daily dose (LEDD) and rotigotine, oral morphine equivalent (OME) and benzodiazepine doses in the last 72 hours of life . OUTCOMES: Pain (72%), respiratory secretions (66%) and agitation (66%) were the most documented EOL symptoms. 83% (n = 52) of PWP were eligible for rotigotine and, of those, 13% (n = 7) received the correct dose, 38% (n = 20) a lower dose, 12% (n = 6) a higher dose and 37% (n = 19) did not receive any. Rotigotine dose was positively associated with total (P = 0.016) and PRN (P = 0.037) benzodiazepine dose. LEDD was positively associated with total benzodiazepine (P = 0.018) and total OME dose (P = 0.046). Contraindicated dopamine antagonists were prescribed for 43% of PWP and administered in 31% of those cases. CONCLUSIONS: Rotigotine dose and admission LEDD were both associated with proxy measures of distress in the last 72 hours of life. This suggests cautious use of rotigotine at EOL. LEDD may help identify patients at risk of distress. Rates of inappropriate prescribing and symptom prevalence were high, indicating a need for further staff education to optimize the care of PWP.

Parkinson's disease: symptoms and medications at the end of life.

OBJECTIVES: People with Parkinson's disease (PwP) have a high palliative symptom burden throughout their disease course, equivalent to advanced malignancy. We aim to establish trends in symptom frequency and prescribing in the 72 hours prior to death for PwP. METHODS: Retrospective case note review of PwP who died between February 2019 and September 2020. RESULTS: 51 patients were included. 60.78% of patients (n=31) had agitation and 58.82% (n=30) had pain in the final 72 hours. Patients with cognitive impairment were 4.67 times more likely to experience agitation (p=0.035) compared with those without, with higher total midazolam doses (29.18 mg vs 11.4 mg, p=0.21). Terminal motor symptoms were recorded in three patients. 28.57% of patients received the recommended dose of rotigotine for dopaminergic therapy. CONCLUSIONS: PwP have a significant symptom burden at the end of life (EOL) with levels of terminal agitation at the higher end of those expected in the general population. There was a trend towards higher doses of sedation, rather than analgesia, in people with coexistent cognitive impairment.Terminal stiffness, despite being seldom documented in the literature, is an important although infrequent symptom.Rotigotine use at EOL remains commonplace and better understanding of its effect and dosing is required.

Proactive and Integrated Management and Empowerment in Parkinson's Disease protocol for a randomised controlled trial (PRIME-UK) to evaluate a new model of care.

BACKGROUND: People living with Parkinson's disease experience progressive motor and non-motor symptoms, which negatively impact on health-related quality of life and can lead to an increased risk of hospitalisation. It is increasingly recognised that the current care models are not suitable for the needs of people with parkinsonism whose care needs evolve and change as the disease progresses. This trial aims to evaluate whether a complex and innovative model of integrated care will increase an individual's ability to achieve their personal goals, have a positive impact on health and symptom burden and be more cost-effective when compared with usual care. METHODS: This is a single-centre, randomised controlled trial where people with parkinsonism and their informal caregivers are randomised into one of two groups: either PRIME Parkinson multi-component model of care or usual care. Adults ≥18 years with a diagnosis of parkinsonism, able to provide informed consent or the availability of a close friend or relative to act as a personal consultee if capacity to do so is absent and living in the trial geographical area are eligible. Up to three caregivers per patient can also take part, must be ≥18 years, provide informal, unpaid care and able to give informed consent. The primary outcome measure is goal attainment, as measured using the Bangor Goal Setting Interview. The duration of enrolment is 24 months. The total recruitment target is n=214, and the main analyses will be intention to treat. DISCUSSION: This trial tests whether a novel model of care improves health and disease-related metrics including goal attainment and decreases hospitalisations whilst being more cost-effective than the current usual care. Subject to successful implementation of this intervention within one centre, the PRIME Parkinson model of care could then be evaluated within a cluster-randomised trial at multiple centres.

Parkinson's disease and palliative care: a quality of care Delphi study.

OBJECTIVES: Extending palliative care services to those with long-term neurological conditions is a current aim of UK health policy. Lack of holistic guidelines for palliative and end-of-life care, and differing models of service provision, has resulted in heterogeneity in care access and quality. There is a need for evidence-based standards of care to audit Parkinson's services and drive improvements. METHODS: A two-stage Delphi process was used to achieve consensus on statements that define quality standards in palliative care for patients with Parkinson's disease (PD). An expert panel was selected to comprise healthcare professionals, patients and carers based in the UK; this panel evaluated the statements via a Delphi survey. Quantitative and qualitative analysis of the results informed modifications between the Delphi rounds. RESULTS: A final set of 16 statements was produced, reflecting aspirational standards of palliative care in PD. These statements, split into four domains ('Structures and processes of care', 'Preparing for the end of life', ' Care in the last weeks of life' and 'Care in the last days of life') underline the importance of joint working between generalist and specialist services, individualised care and early and regular advance care planning. CONCLUSIONS: The Delphi process has established a set of standards which can be integrated within and guide services, helping to improve the quality and equality of care. Further work remains to establish the effectiveness of different models of service provision, including the implementation of keyworkers and telemedicine.

Parkinson's disease - palliative care needs assessment tool: adaptation and psychometric testing.

OBJECTIVE: Parkinson's disease is a progressive, life-limiting disease, which benefits from structured palliative care. Systematic recognition and triage of needs helps facilitate care, allows focused referral to specialist palliative care and aids sustainability of services. Existing palliative care tools for Parkinson's are patient/caregiver completed and focus on quantification rather than identification of the need. The Needs Assessment Tool: Progressive Disease in Cancer was designed for rapid identification of unmet needs in cancer. We describe adaptation and psychometric testing of the tool for Parkinson's disease (NAT:Parkinson's disease). METHODS: Set in secondary care, Parkinson's disease outpatient clinics in the UK, this study included people with Parkinson's, age >18, including all disease stages. People with atypical Parkinsonian syndromes were excluded. Adaptation was made using systematic review and focus groups. Construct validity was tested in 50 consecutive patients against established patient and caregiver measures, analysed with Kendall's Tau B. Inter-rater reliability, using video consultations, were calculated in broad range of clinicians involved in Parkinson's disease care using a weighted kappa; 0-0.2=slight, 0.21-0.40=fair, 0.41-0.60=moderate, 0.61-0.80=substantial and p<0.05 indicative of statistically significant agreement. RESULTS: Validity was substantial for two, moderate for five and fair for four constructs. Inter-rater reliability was substantial for one, moderate for three and fair for six constructs. Two constructs failing to demonstrate fair reliability did show very high percentage agreement. CONCLUSION: Findings support the suitability of the NAT:Parkinson's disease for everyday clinical use in the identification and triage of unmet palliative need for people with Parkinson's disease.

Access and Attitudes Toward Palliative Care Among Movement Disorders Clinicians.

BACKGROUND: Neuropalliative care is an emerging field for those with neurodegenerative illnesses, but access to neuropalliative care remains limited. OBJECTIVE: We sought to determine Movement Disorder Society (MDS) members' attitudes and access to palliative care. METHODS: A quantitative and qualitative survey instrument was developed by the MDS Palliative Care Task Force and e-mailed to all members for completion. Descriptive statistics and qualitative analysis were triangulated. RESULTS: Of 6442 members contacted, 652 completed the survey. Completed surveys indicating country of the respondent overwhelmingly represented middle- and high-income countries. Government-funded homecare was available to 54% of respondents based on patient need, 25% limited access, and 21% during hospitalization or an acute defined event. Eighty-nine percent worked in multidisciplinary teams. The majority endorsed trigger-based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate. Although 66% referred patients to palliative care, 34% did not refer patients. Barriers were identified by 68% of respondents, the most significant being available workforce, financial support for palliative care, and perceived knowledge of palliative care physicians specific to movement disorders. Of 499 respondents indicating their training in palliative care or desire to learn these skills, 55% indicated a desire to gain more skills. CONCLUSIONS: The majority of MDS member respondents endorsed a role for palliative care in movement disorders. Many members have palliative training or collaborate with palliative care physicians. Although significant barriers exist to access palliative care, the desire to gain more skills and education on palliative care is an opportunity for professional development within the MDS. © 2021 International Parkinson and Movement Disorder Society.

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

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 short- and 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.

Rotigotine patch prescription in inpatients with Parkinson's disease: evaluating prescription accuracy, delirium and end-of-life use.

BACKGROUND: Rotigotine patch, a trans-dermal dopamine agonist, is used acutely to replace oral dopaminergic medications for inpatients with Parkinson's disease where enteral routes are no longer available, and is also an option in end-of-life care where patients can no longer swallow. Concerns regarding acute use of Rotigotine include difficulty achieving dopaminergic equivalence, promotion of delirium/hallucinations and promotion of terminal agitation. OBJECTIVE: our objectives were to establish: (i) accuracy of Rotigotine prescribing, (ii) rates of delirium/hallucinations and (iii) rates of terminal agitation. METHOD: we retrospectively evaluated the use of Rotigotine in an inpatient population at a UK teaching hospital. Prescriptions between January 2018 and July 2019 were identified and inpatient records were analysed. OPTIMAL Calculator 2 was used as a gold standard for assessing conversion of oral dopaminergic medication to Rotigotine. RESULTS: a total of 84 inpatients were included. 25 (30%) patients were prescribed the recommended dose of Rotigotine; 31 (37%) higher and 28 (33%) lower than recommended. A total of 15 of 41 (37%) patients with dementia and 22 of 49 (45%) patients with delirium before initiation of Rotigotine inappropriately received the higher dose; 20 (24%) patients developed new/worsening delirium and 8 (10%) patients developed new/worsening hallucinations; and 59 (70%) patients were dead at time of evaluation, of these 40 (68%) died in hospital, 10 (25%) of whom experienced terminal agitation. CONCLUSIONS: acute conversion of oral dopaminergic medication to trans-dermal Rotigotine patch remains problematic despite the availability of validated tools. Inappropriate dosing may precipitate or worsen delirium/hallucinations. Use at end-of-life requires further evaluation.

Palliative care in Parkinson's disease: review of needs assessment tools.

Palliative care in Parkinson's disease (PD) has developed significantly in the past five years. The presence of unmet palliative care need, similar to that in malignant conditions, is well established, but may not always be identified by clinicians in everyday practice. To address this, clinicians must be able to rapidly identify, triage, assess and address unmet needs and monitor response to intervention. This is also central to establishing integrated models of care for PD. Systematic evaluation of need can be facilitated by structured assessment tools, and several such tools have now been described for PD. This article reviews the palliative care assessment tools which have been developed for PD, both for patients and also for caregivers. It sets out the psychometric properties of these tools and describes the way in which they may be applied within an overall, systematic assessment of unmet need.

Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research.

INTRODUCTION: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson's disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. METHODS: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson's Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. RESULTS: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. CONCLUSIONS: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers.

Palliative care for Parkinson's disease: a summary of the evidence and future directions.

BACKGROUND: Parkinson's disease is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care for people with Parkinson's disease, services have been slow in developing. Obstacles include poor understanding and recognition of palliative care needs, the role for specialist palliative care services and an agreed structure for sustainable palliative care provision. AIM: To summarise the evidence base for palliative care in Parkinson's disease, linking current understanding with implications for clinical practice and identifying areas for future research. WHAT IS KNOWN: Convention recognises a final 'palliative phase' in Parkinson's disease, while qualitative studies suggest the presence of palliative care need in Parkinson's disease from diagnosis. Clinical tools to quantify palliative symptom burden exist and have helped to identify targets for intervention. Dementia is highly prevalent and influences many aspects of palliative care in Parkinson's disease, with particular implications for end-of-life care and advance care planning. IMPLICATIONS FOR CLINICAL PRACTICE: The 'palliative phase' represents a poor entry point for consideration of palliative care need in Parkinson's disease. An alternative, integrated model of care, promoting collaboration between specialist palliative and neurological services, is discussed, along with some specific palliative interventions. WHAT IS UNKNOWN: Limited evidence exists regarding timing of palliative interventions, triggers for specialist referral and management of terminal care. IMPLICATIONS FOR FUTURE RESEARCH: Research examining access to palliative care and management of terminal symptoms will assist development of sustainable, integrated palliative care services for Parkinson's disease.