Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
BACKGROUND: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life.
OBJECTIVE: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD.
METHODS: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.
RESULTS: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD.2) Healthcare professionals do not always know what PD really means. Most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided.
CONCLUSION: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.
BACKGROUND: Advance care planning allows people to plan for their future care needs and can include medical, psychological and social aspects. However, little is known on the use, experience of and attitudes towards advance care planning in patients with Parkinsonian disorders, their family carers and in health care professionals.
METHODS: We conducted a systematic search of online databases in April 2019 using a narrative synthesis approach with thematic analysis and tabulation to synthesise the findings.
RESULTS: We identified 507 articles and 27 were included. There were five overarching themes: 1) what is involved in advance care planning discussions, 2) when and how advance care planning discussions are initiated, 3) barriers to advance care planning, 4) the role of healthcare professionals and 5) the role of the family carer. This evidence was used to highlight eight effective components to support optimal advance care planning in Parkinsonian disorders: advanced care planning discussions should be individualised in content, timing and approach, patients be invited to discuss advance care planning early and regularly, palliative care services be introduced early, a skilled professional deliver advance care planning, support to family carers be offered in the advance care planning process, healthcare professionals educated on Parkinsonian disorders and palliative care, advance care planning be clearly documented and shared with relevant services; and healthcare professionals enabled to conduct effective advance care planning.
CONCLUSIONS: These components can inform best practice in advance care planning in patients with Parkinsonian disorders.
Background and Aims: Palliative care is an important area of intervention in neurodegenerative diseases. The aim of this study is to understand the relationship between Palliative Care Needs and Caregiver Burden among persons diagnosed with neurodegenerative diseases.
Methods: A cross-sectional study design was adopted to explore the research problem. A prospective sample of 120 participants (60 Patient Caregiver dyads) of Motor Neurone Disease (MND) and Parkinson's disease (PD) were recruited for the study based on inclusion and exclusion criteria from a quaternary referral care centre for neurology in south India. Patients seeking care were recruited for the study consecutively. Palliative care outcome scale and Zarit Burden Interview scale were administered to understand the relationship.
Results: It was found that Palliative care outcomes score was positively correlated with caregiver burden (r = 0.597), showing that there is a bi-directional relationship between palliative care needs and caregiver burden.
Conclusion: Irrespective of the differences in illness characteristics, the study found that palliative care needs are high among chronic neurological conditions which requires a noncategorical psychosocial approach in ensuring care.
Introduction: Palliative care in Parkinson's Disease (PD) is an effective intervention to improve quality of life, although historically, access and availability have been very restricted.
Methods: We performed a retrospective cohort study using the National Inpatient Sample (NIS) data from 2007 to 2014. Diagnostic codes were used to identify patients with PD and palliative care referral. Trends were calculated and logistic analysis performed to identify predictors of palliative care use.
Results: We identified 397,963 hospitalizations from 2007 to 2014 for patients with PD. Of these, 10,639 (2.67%) were referred to palliative care. The rate of consultation increased from 0.85% in 2007 to 4.49% in 2014. For 1 unit in year increase, there was 1.23 time the odds of receiving palliative consultation (OR 1.23, CI 1.21–1.25, p < 0.0001). Hispanics (OR 0.90, CI 0.81–1.01, p = 0.0550), Black (OR 0.90, CI 0.81–1.01, p = 0.0747) and White patients had similar rates of referral after adjustment. Women were less likely to be referred to palliative care (OR 0.90, CI 0.87–0.94, p < 0.0001). Other factors strongly associated with a higher rate of referrals included private insurance when compared to Medicare (OR 2.14, CI 1.89–2.41, p < 0.0001) and higher income (OR 1.41, CI 1.30–1.53, p < 0.0001).
Conclusion: There has been a significant increase in palliative care referrals among hospitalized patients with PD in the US, although the overall rate remains low. After controlling for confounders, racial and ethnic disparities were not found. Women, patients with Medicare/Medicaid, and those with lower income were less likely to be referred to palliative care.
Parkinson’s disease (PD) is a common neurodegenerative disorder, with a continuously increasing prevalence. With improved clinical and therapeutic management of PD, more patients reach later stages of the disease, meaning they may face new clinical problems that were not commonly approached. This gave way to the description of a new PD stage, late-stage PD (LSPD), which is clinically discernible from the advanced-stage one. Therefore, LSPD patients have new and different needs, regarding pharmacological and non pharmacological interventions, including palliative care and multidisciplinary teams. LSPD patients constitute an‘orphan population’, who traditionally was excluded from previous studies, due to its high disability. With this manuscript, we intend to review specific management challenges of LSPD patients, covering this new concept and its clinical features, how to assess these patients, therapeutic recommendations, as well as discussing ongoing research and future perspectives.
Outpatient palliative care (PC) improved quality of life and symptoms among patients with Parkinson disease and related disorders in a trial in JAMA Neurology.
The study’s 210 patients and 175 caregivers were randomly assigned to outpatient integrative PC or to standard care. Every 3 months for a year, participants received PC visits either in person or via telemedicine from a neurologist, social worker, chaplain, and nurse with guidance from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care clinician.
BACKGROUND: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables.
METHODS: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS).
RESULTS: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed.
CONCLUSIONS: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.
A huge proportion of people with Parkinson’s disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson’s disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as =80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup ‘neuro-palliative care’ in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.
Importance: Parkinson disease and related disorders (PDRD) have consequences for quality of life (QoL) and are the 14th leading cause of death in the United States. Despite growing interest in palliative care (PC) for persons with PDRD, few studies are available supporting its effectiveness.
Objective: To determine if outpatient PC is associated with improvements in patient-centered outcomes compared with standard care among patients with PDRD and their caregivers.
Design, Setting, and Participants: This randomized clinical trial enrolled participants at 3 academic tertiary care centers between November 1, 2015, and September 30, 2017, and followed them up for 1 year. A total of 584 persons with PDRD were referred to the study. Of those, 351 persons were excluded by phone and 23 were excluded during in-person screenings. Patients were eligible to participate if they had PDRD and moderate to high PC needs. Patients were excluded if they had urgent PC needs, another diagnosis meriting PC, were already receiving PC, or were unable or unwilling to follow the study protocol. Enrolled participants were assigned to receive standard care plus outpatient integrated PC or standard care alone. Data were analyzed between November 1, 2018, and December 9, 2019.
Interventions: Outpatient integrated PC administered by a neurologist, social worker, chaplain, and nurse using PC checklists, with guidance and selective involvement from a palliative medicine specialist. Standard care was provided by a neurologist and a primary care practitioner.
Main Outcomes and Measures: The primary outcomes were the differences in patient quality of life (QoL; measured by the Quality of Life in Alzheimer Disease scale) and caregiver burden (measured by the Zarit Burden Interview) between the PC intervention and standard care groups at 6 months.
Results: A total of 210 patients with PDRD (135 men [64.3%]; mean [SD] age, 70.1 [8.2] years) and 175 caregivers (128 women [73.1%]; mean [SD] age, 66.1 [11.1] years) were enrolled in the study; 193 participants (91.9%) were white and non-Hispanic. Compared with participants receiving standard care alone at 6 months, participants receiving the PC intervention had better QoL (mean [SD], 0.66 [5.5] improvement vs 0.84 [4.2] worsening; treatment effect estimate, 1.87; 95% CI, 0.47-3.27; P = .009). No significant difference was observed in caregiver burden (mean [SD], 2.3 [5.0] improvement vs 1.2 [5.6] improvement in the standard care group; treatment effect estimate, -1.62; 95% CI, -3.32 to 0.09; P = .06). Other significant differences favoring the PC intervention included nonmotor symptom burden, motor symptom severity, completion of advance directives, caregiver anxiety, and caregiver burden at 12 months. No outcomes favored standard care alone. Secondary analyses suggested that benefits were greater for persons with higher PC needs.
onclusions and Relevance: Outpatient PC is associated with benefits among patients with PDRD compared with standard care alone. This study supports efforts to integrate PC into PDRD care. The lack of diversity and implementation of PC at experienced centers suggests a need for implementation research in other populations and care settings.
Trial Registration ClinicalTrials.gov Identifier: NCT02533921
A major unresolved problem in neurodegenerative disease is why and how a specific set of neurons in the brain are highly vulnerable to neuronal death. Multiple pathways and mechanisms have been proposed to play a role in Alzheimer disease (AD), Parkinson disease (PD), amyotrophic lateral sclerosis (ALS), and Huntington disease (HD), yet how they contribute to neuronal vulnerability remains far from clear. In this review, various mechanisms ascribed in AD, PD, ALS, and HD will be briefly summarized. Particular focus will be placed on Rhes-mediated intercellular transport of the HD protein and its role in mitophagy, in which I will discuss some intriguing observations that I apply to model striatal vulnerability in HD. I may have unintentionally missed referring some studies in this review, and I extend my apologies to the authors in those circumstances.
OBJECTIVE: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care.
METHODS: This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.
RESULTS: Four themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.
CONCLUSIONS: ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.
A palliative approach to care is person-centered and aims to minimize overall disease burden among patients with serious illnesses. There is rising interest in the role of palliative care to improve quality of life among patients with Parkinson's disease (PD). While there is a clear indication for palliative care involvement in those with advanced disease, there is also increasing evidence for the role palliative care may play earlier in the course of PD. However, optimal methods for timing and implementation of these services remain unclear. Here, we aim to explore the palliative needs of individuals with PD from the time of diagnosis over the entire course of the illness. We discuss methods for delivering palliative care services including consultative specialty palliative care, neurologist or primary care-delivered palliative care (primary palliative care), and the emerging specialty of neuropalliative care. We also explore novel care delivery methods and their role in improving patient access to palliative services. We argue that primary palliative care is optimally positioned for the delivery of palliative care for the majority of patients with PD over the course of their illness and explore how and when palliative medicine or neuropalliative specialists can supplement this care. Finally, we describe gaps in our current understanding of outpatient palliative care delivery among the PD population including the development of better methods to identify the palliative needs of patients, the validation of novel care delivery mechanisms, and the need to enhance neurologists' and other medical providers' education in the provision of palliative care services.
The purpose of this review is to describe the role that telehealth has in the delivery of palliative care to people with Parkinson's disease and related disorders (PDRDs), particularly as their disease advances, and they become homebound. A review of the Cochrane database, PubMed, and the American Academy of Neurology (AAN) guidelines was conducted to identify peer-reviewed publications on this topic. Telehealth has been found to increase access to neurological specialty care for people with PDRDs who live in more under-resourced areas or are homebound due to their advancing neurodegenerative disease. Given the benefits of palliative care for people with PDRDs and their caregivers, increasing access via telehealth to palliative care through research, education and policy efforts has the potential to significantly improve the landscape of care for those with PDRDs.
Palliative care is an approach to the care of patients, affected by serious illness, and their families that aims to reduce suffering through the management of medical symptoms, psychosocial issues, spiritual well-being, and setting goals of care. Patients and families affected by a neurodegenerative illness have significant palliative care needs beginning at the time of diagnosis and extending through end-of-life care and bereavement. We advocate an approach to addressing these needs where the patient's primary care provider or neurologist plays a central role. Key skills in providing effective palliative care to this population include providing the diagnosis with compassion, setting goals of care, anticipating safety concerns, caregiver assessment, advance care planning, addressing psychosocial concerns, and timely referral to a hospice. Managing distressing medical and psychiatric symptoms is critical to improving quality of life throughout the disease course as well as at end-of-life. Many symptoms are common across illnesses; however, there are issues that are specific to the most common classes of neurodegenerative illness, namely dementia, parkinsonism, and motor neuron disease. Incorporating a palliative approach to care, although challenging in many ways, empowers physicians to provide greater support and guidance to patients and families in making the difficult journey through a neurodegenerative illness.
BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach.
METHODS: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson's Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer's Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson's Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI.
RESULTS: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r2=0.024, P=0.0380), patient health-related quality of life (PDQ-39, r2=0.161, P<0.0001), caregiver depression (HADS Depression, r2=0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r2=0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r2=0.088, P<0.0001) were significant contributors to ZBI scores.
CONCLUSIONS: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.
Parkinson's disease and frailty are both common conditions affecting older people. Little is known regarding the association of the Clinical Frailty Scale with hospital outcomes in idiopathic Parkinson's disease patients admitted to the acute hospital. We aimed to test whether frailty status was an independent predictor of short-term mortality and other hospital outcomes in older inpatients with idiopathic Parkinson's disease.
METHOD: We conducted an observational retrospective study in a large tertiary university hospital between October 2014 and October 2016. Routinely measured patient characteristics included demographics (age and sex), Clinical Frailty Scale, acute illness severity (Emergency Department Modified Early Warning Score), the Charlson Comorbidity Index, discharge specialty, history of dementia, history of depression and the presence of a new cognitive impairment. Outcomes studied were inpatient mortality, death within 30 days of discharge, new institutionalisation, length of stay >= 7 days and readmission within 30 days to the same hospital.
RESULTS: There were 393 first admission episodes of idiopathic Parkinson's disease patients aged 75 years or more; 166 (42.2%) were female. The mean age (standard deviation) was 82.8 (5.0) years. The mean Clinical Frailty Scale was 5.9 (1.4) and the mean Charlson Comorbidity Index was 1.3 (1.5). After adjustment for covariates, frailty and acute illness severity were independent predictors of inpatient mortality; odds ratio for severely/very severely frail or terminally ill = 8.1, 95% confidence interval 1.0-63.5, p = 0.045 and odds ratio for acute illness severity: 1.3, 95% confidence interval 1.1-1.6, p = 0.005). The Clinical Frailty Scale did not significantly predict other hospital outcomes.
CONCLUSIONS: The Clinical Frailty Scale was a significant predictor of inpatient mortality in idiopathic Parkinson's disease patients admitted to the acute hospital and it may be useful as a marker of risk in this vulnerable population.
BACKGROUND: Advanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers.
METHODS: With the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model. Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases.
RESULTS: The pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients.
CONCLUSIONS: As our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.
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.