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. 2021 Jan 13;17(4):1456–1463. doi: 10.1007/s13311-020-00989-1

Palliative Care for Parkinson’s Spectrum Disorders: an Emerging Approach

Maya Katz 1,2,✉
PMCID: PMC7851259  PMID: 33439466

Abstract

Parkinson’s spectrum disorders (PSD) are neurodegenerative parkinsonian conditions that carry a tremendous symptom burden. Palliative care is an interdisciplinary medical specialty that focuses on improving quality of life for patients and caregivers affected by serious life-limiting illnesses, at any stage of disease. Research and clinical programs into this emerging therapeutic approach remain limited. This review focuses on the role of palliative care in the treatment of patients with PSD. Gaps in knowledge and recommendations for future research are discussed.

Supplementary Information

The online version contains supplementary material available at 10.1007/s13311-020-00989-1.

Key Words: Palliative care, Parkinson disease, parkinsonian disorders, caregivers, interdisciplinary communication

Introduction

Parkinson’s spectrum disorders (PSD) are a group of neurodegenerative, life-limiting movement disorders that cause progressive parkinsonism, as well as disabling cognitive, and psychiatric symptoms [1–8]. In addition, these disorders isolate those afflicted by impairing mobility and communication. The tremendous symptom burden caused by PSD significantly diminishes quality of life for both patients and caregivers [5, 9]. PSD includes Parkinson’s disease (PD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and dementia with Lewy bodies (DLB).

Palliative care is specialized medical care for patients and caregivers affected by serious illness. It focuses on treating the physical, emotional, psychosocial, and spiritual suffering caused by serious illness in order to improve quality of life. Palliative care also helps people plan and prepare for the future using serious illness communication skills to optimize advance care planning and align treatment recommendations to goals of care [10]. Given the comprehensive scope of palliative care’s mission, it requires an interdisciplinary team that includes a palliative care physician, a social worker, a nurse, and a chaplain. Interdisciplinary teams work interdependently, in contrast to multidisciplinary teams, where roles are clearly defined and expertise is contributed in relative isolation from other team members [11].

Palliative care is a relatively new medical specialty, and its integration into neurology has been limited. This review focuses on research that evaluates the role of palliative care for the treatment of patients with PSD. Gaps in knowledge and future directions for research are discussed.

Methods

A literature search was performed using the electronic databases: PubMed, MEDLINE (Ovid), Google Scholar, and the Cochrane Library, to identify studies published from January 2000 to February 2020. Reference lists of original publications were reviewed to ensure that the literature search was complete. Randomized clinical trials, prospective cohort studies, retrospective studies, case series, and expert reviews were included. The key search terms were “symptom burden,” “advance care planning,” “palliative care,” “Parkinson’s disease,” “corticobasal degeneration,” “progressive supranuclear palsy,” “multiple system atrophy,” “corticobasal degeneration,” “dementia with Lewy bodies,” and “caregivers.” Studies were excluded if they were not available in English or had limited details regarding methodology. Findings from this review are grouped by themes.

Results

Palliative Care Needs in Parkinson’s Spectrum Disorders

Symptom Burden in Parkinson’s Spectrum Disorders

Total pain is a palliative care concept that has evolved to describe all of the physical, emotional, social, practical, and spiritual distress caused by serious illness for patients and their families [12]. The total symptom burden measured in PD has been found to be similar to the total symptom burden reported in metastatic cancer [6]. While a similar study assessing symptom burden has not been done in patients with atypical parkinsonian syndromes, these disorders typically cause a more rapid functional decline than PD, and standard PD therapies are usually ineffective or poorly tolerated [13]. While the motor symptoms of PSD severely impair mobility and independence [13–15], the nonmotor symptoms (e.g., depression, insomnia, fatigue, psychosis, dementia) [1–8, 16–19] have been shown to have a greater impact on quality of life [1, 20, 21]. Furthermore, there is evidence that nonmotor symptoms are under-recognized and undertreated in PSD [8, 22–27]. For example, depression occurs in about 40% of people with PD [28] and is associated with worse functional disability, quality of life, and caregiver distress [29]. There is evidence indicating that the majority of people with PD who meet the criteria for a depressive disorder are not receiving antidepressant treatment, and among the patients with PD and depression who are receiving treatment, almost half are receiving treatment that is inadequate or ineffective [30, 31]. Suicidal ideation and suicide-specific mortality is higher in people with PD compared to healthy controls [32, 33].

Psychosocial and Spiritual Distress in Parkinson’s Spectrum Disorders

Changing roles in relationships, progressive loss of independence, and increased economic burden often cause severe emotional and psychosocial strain for patients with PSD [8, 27, 34, 35]. Spiritual distress in PSD includes demoralization, grief, existential distress, and death anxiety [18, 27, 36–38]. The loss of ability to communicate due to dementia, hypophonia, bradyphrenia, and fine motor impairment contributes to the isolation often experienced by patients with PSD [4, 8, 24, 25, 27, 36, 38–40].

End-of-Life Care in Parkinson Spectrum Disorders

People with PD are significantly less likely to die at home and with hospice services than the general population [41–43]. Only 4% of patients with PD in the United States (US) die at home with hospice [41], even though the majority of patients with serious life-limiting illnesses report that they would want to die at home [44].

The symptom burden at the end-of-life for patients with PSD increases significantly [22, 27, 45, 46]. Patients are usually functional quadriplegics and are wheelchair-bound and then bedridden in advanced stages of PSD [5, 8, 15, 27]. Difficulty communicating and pain were rated by caregivers of people with PD as the most bothersome symptoms at the end-of-life [47]. Paranoid delusions and hallucinations often become severe, frightening, and difficult to control in the terminal stage of PD dementia (PDD) and DLB [45, 46]. In the last weeks to days of life, patients usually suffer from cachexia, severe physical pain, and dyspnea [4]. Ultimately, the majority of people with PSD will die of their underlying neurodegenerative diseases [2, 22, 27, 45, 48].

Advance Care Planning in Parkinson’s Spectrum Disorders

Advance care planning is a major component of palliative care which includes discussions to identify patient and caregiver goals, values, and priorities; provide anticipatory guidance to help patients and caregivers plan and prepare for the future; identify surrogate decision makers; and document preferences for medical care [49, 50]. The high rates of dementia and communication difficulties found in patients with more advanced stages of PSD make it critical to discuss advance care planning early in the course of PSD [51, 52]. There is evidence that people with PSD do not have adequate advance care planning, although studies have shown that a majority of people with PD and atypical parkinsonism want to talk to their doctors about what to expect in the future to help with preparing and planning for the future [45, 53–56]. For patients with PSD, and their caregivers, anticipatory guidance and early advance care planning has been shown to be a priority [27, 45, 53, 55, 57]. In one survey of several hundred patients with PD, 94% wanted prognostic information early in the course of their disease [55].

Caregiver Distress in Parkinson Spectrum Disorders

Caregiver burnout is common in those caring for people with PSD [58–61]. Predictors of caregiver burden in PD include poor patient spiritual well-being, as well as caregiver anxiety and depression [62]. Embarrassment, anger, lack of privacy, and guilt are commonly described [63]. Many PSD patients have sleep disturbances, and this adversely affects the sleep quality of their caregivers [64]. Caregivers can also experience physical and sexual aggression directed against them by the person with a PSD who they are caring for, particularly if psychosis and dementia are present [65]. Anticipatory grief (also called predeath grief) is common in caregivers, particularly in caregivers of patients with PSD who have a higher symptom burden and advanced dementia. Caregivers with higher rates of burnout and depression scores have more anticipatory grief symptoms [23, 66, 67]. Caregivers of people with PD have reported significant concerns about the future relating to finances, living situation, and caregiving in advanced disease [66, 68].

Benefits of Palliative Care in Parkinson’s Spectrum Disorders

Palliative Care for Parkinson’s Spectrum Disorders: Intensive Symptom Management

Intensive symptom management is a core principle of palliative care [69]. Many PSD-related symptoms have been shown to significantly improve with palliative care [6, 18]. Results from the first randomized clinical trial comparing palliative care to usual care for patients with PSD found that palliative care significantly improved quality of life, symptom burden, and spiritual distress at 6 months and 12 months, while reducing caregiver distress at 12 months [18]. There were no significant reported side effects from palliative care. Patients with PSD and their caregivers were eligible for the study as long as there was at least one moderate to severe unmet palliative care need (i.e., physical symptoms, psychosocial distress, spiritual distress, or need for advance care planning) using a validated Palliative Care Needs Assessment Tool (PC-NAT) modified for PD [70, 71]. An earlier single-site prospective study showed significant improvement in the modified Edmonton Symptom Assessment System Scale for PD (ESAS-PD) in a palliative clinic for people with PD [6]. Constipation, dysphagia, anxiety, pain, and drowsiness were the symptoms found to be the most responsive to palliative care.

Palliative Care for Parkinson’s Spectrum Disorders: Advance Care Planning

Palliative care has been shown to significantly increase advance care planning in patients with PD [18, 42, 72], and patients with PD are much more likely to die at home if they have a documented advance care planning discussion [42]. Unfortunately, many older adults get caught in a cycle of being “rehabbed to death” [73], where they move between the hospital and the skilled nursing facility/nursing home. Invasive and aggressive medical care at end of life is often medically futile and is counter to the goals of care expressed by the majority of patients with serious life-limiting illnesses [44, 74]. Anticipatory guidance can help patients with advanced PSD avoid medically futile treatments, such as high-calorie supplements, feeding tubes, and thickened liquids [75–77].

There is concern among clinicians that discussing disease progression may cause patients and caregivers to lose hope or overwhelm them with difficult news they are not ready to hear [49]. Palliative care addresses this concern by providing a framework for assessing patients’ and caregivers’ preferences for receiving serious illness information. Advance care planning conversations using palliative care serious illness communication skills have been shown to reduce anxiety and improve quality of life in patients and caregivers [78]. The importance of advance care planning was recognized by the American Academy of Neurology (AAN) as a quality metric for people with PD [79].

Palliative Care for Parkinson’s Spectrum Disorders: Caregiver Support

In palliative care, the interdisciplinary team helps the caregiver cope with difficult emotions (e.g., isolation, grief, guilt) and addresses their psychosocial, practical, and spiritual distress [69]. Palliative care shifts the unit of care to the family since serious illness affects the entire family [5]. Qualitative research indicates that caregivers are requesting more anticipatory guidance to help them plan and prepare for the future [53, 68]. For example, many caregivers with DLB report that the providers did not give them the information they needed to be prepared for end-of-life process and care of their loved one [45]. Anticipatory guidance has been shown to reduce the risk of complicated grief in caregivers during bereavement [80].

Palliative Care for Parkinson’s Spectrum Disorders: Reducing Clinician Burnout

Another area where palliative care provides benefit is by reducing clinician burnout and improving clinician resilience. This is a major focus in all palliative care programs and is based on the principle that a clinician suffering from burnout, or at risk of burnout, will find it challenging to provide empathic person-centered care [81, 82]. Palliative care interventions to reduce clinician burnout are primarily focused on building resilience using evidence-based methods [83].

Timing of Palliative Care Interventions for Parkinson’s Spectrum Disorders

According to the World Health Organization (WHO), palliative care is “applicable early in the course of illness, in conjunction with other therapies” [10], yet despite this, many clinicians equate palliative care to end-of-life care [84]. The majority of PSD patients enrolled in the only randomized controlled trial of a palliative care intervention in Parkinson’s disease [18] had mild severity disease (Hoehn & Yahr stage 2) [15] and still significantly benefited from palliative care, although patients with a higher palliative care need had a more significant benefit from the intervention [18]. Palliative care may even be appropriate for many patients and care partners at the time of diagnosis, given qualitative research indicating that many patients with PSD experience significant psychosocial and spiritual distress when they receive their diagnosis [85].

Accessibility of Palliative Care for Parkinson’s Spectrum Disorders

There is growing evidence supporting the significant benefit of palliative care in improving quality of life for patients and caregivers affected by PSD [6, 18]. Unfortunately, there are only a handful of outpatient neuropalliative care programs in the US, and less than 5% of people with PD die with hospice services [43].

There are various modalities of potential palliative care delivery for people with PSD, including 1) interdisciplinary specialty palliative care consultations; 2) palliative care specialists integrated into an interdisciplinary movement disorders clinic; 3) neurologist-delivered primary palliative care; and 4) the emerging specialty of neuropalliative care (neurologists who have palliative medicine fellowship training) [86, 87]. Interdisciplinary specialty palliative care consultations are the traditional delivery method for palliative care. This model is resource intensive and may be disconnected from neurological expertise that can help optimize symptom control and anticipatory guidance. Integrating a palliative care specialist into an interdisciplinary movement disorders clinic has been shown to significantly improve quality of life for patients with PSD and reduce caregiver burnout [18], but it is also resource intensive, with a nurse, social worker, chaplain, movement disorder specialist, and palliative care physician all on the same team, with only two of these clinicians able to bill for services. The other limitation with both of these models is that access to specialty palliative care physicians is limited [88].

Primary palliative care can be practiced by nonpalliative specialists within their own discipline [89], significantly expanding access to palliative care for patients with serious illness. These primary palliative care skills include understanding 1) intensive symptom management approaches; 2) basic psychosocial and spiritual health assessments; and 3) basic advance care planning communication skills. Every clinician who cares for patients with a PSD can incorporate primary palliative care skills into daily practice [27, 89]. Palliative care serious illness communication skills help ensure that patients are getting goal-concordant care [90]. Adequate education of neurologists in primary palliative care skills during neurology residency and movement disorder fellowships is currently lacking [91]. Integrating a primary palliative care curriculum into neurology residency training and movement disorder fellowship training is essential to improving palliative care access to people with PSD [86]. Primary neuropalliative care providers are supported by specialty interdisciplinary palliative care when needed for issues such as complex symptom management, significant psychosocial distress, existential distress, and/or challenging advance care planning discussions. With the emerging field of neuropalliative care, neurologists who also get specialty training in palliative care can then deliver highly specialized person-centered care that merges expertise across these two disciplines [86, 92].

Even in advanced stages of PSD when most patients are homebound, palliative care can still be offered through telehealth [5, 8, 15, 27, 93]. Neurological care of PD patients by telehealth has been shown to be equivalent to in-person neurological care [94, 95]. Telehealth is also an important tool to increase access to neurological and palliative specialty care in many under-resourced areas of the US [91, 96].

For any outpatient neuropalliative care clinic or primary neuropalliative care provider practice to be sustainable, appropriate understanding of medical billing coding is needed [87]. For example, an advance care planning procedure is billable under Current Procedural Terminology (CPT) code 99497. Philanthropy and research funding may be needed to start and build such a clinical program. Despite the initial investment in starting a neuropalliative care program, palliative care has been shown to reduce overall healthcare costs [97–99]. For example, one study of Medicaid costs in New York state showed that a matched group of patients who received palliative care incurred $6900 less in healthcare costs compared to those who received usual care alone [99].

Palliative Care for Parkinson’s Spectrum Disorders: Gaps in Knowledge

Research evaluating palliative care for the treatment of PSD is limited. Palliative care itself is a relatively new medical specialty, and its important role in the treatment of neurodegenerative disorders is only starting to be recognized [9, 18, 45, 86]. The gaps in our understanding of neuropalliative care for patients with PSD include identifying best practices for primary neuropalliative care, reliable triggers for palliative care interventions, accurate and responsive needs assessment tools, and the optimal model of neuropalliative care that is feasible, effective, and scalable. Much of the current research in neuropalliative care for PSD only includes patients with PD. Additional research should investigate how palliative care interventions can be optimized for patients with atypical parkinsonian syndromes, who often have a more severe symptom burden, and shorter life expectancy compared to PD [4, 46].

To further demonstrate the feasibility and utility of telemedicine in the provision of palliative care to people with PSD, telemedicine was incorporated as an option for visits in the recently published randomized clinical trial comparing palliative care versus usual care for PSD, funded by PCORI [18, 100]. Understanding the optimal way to incorporate telemedicine using comparative effectiveness models, while working on policy advocacy to increase insurance coverage of telemedicine, should be a priority given that this approach increases access to high-quality care for patients with PSD [94, 95].

Awareness of the need to increase the number of primary neuropalliative care providers is growing [88, 90]. In 1997, the Institute of Medicine (IOM) reported that end-of-life care and palliative care education was lacking in medical and nursing training programs; the IOM update to this report in 2014 found that this issue persists [101]. Several studies highlight the lack of training in neurology residency programs in palliative care and end-of-life care [89, 91]. An ongoing National Institutes of Health (NIH) National Institute of Nursing Research (NINR)-funded randomized clinical trial is exploring the feasibility and effectiveness of a primary neuropalliative care training program with access to an interdisciplinary specialty palliative care team by telehealth to increase access to palliative care in the community neurology setting for patients with PSD. This study is using a primary palliative care education program designed with Northwestern University’s Education for Palliative and End-of-Life Care (EPEC) program, EPEC-Neurology [86], and will include an evaluation of this training program. EPEC-Neurology covers serious illness communication skills, clinician wellness, and basic spiritual and caregiver assessment. Efficacy will be determined by improved palliative care knowledge and attitudes towards palliative care pre- and post-training, as well as clinician burnout, and clinical measures of quality of life in patients and caregivers.

One area where there is particularly limited research and education is in end-of-life care for patients with PSD [4, 9, 18, 22, 45, 86]. Specialized neuropalliative care is essential to controlling the severe symptom burden found in end-stage PSD [18], but would benefit from greater integration with neurological expertise to reduce the risk of medication errors. For example, haloperidol and metoclopramide are commonly found in hospice comfort kits that are provided to patients and caregivers to ease symptoms, but these are contraindicated in PSD due to the high risk of worsening motor and nonmotor symptoms with these medications. Research into various treatment modalities for refractory symptoms at the end of life for people with PSD (e.g., paranoid psychosis, agitation) is needed to identify the best treatment strategies.

Traditionally, palliative care has been perceived as a treatment reserved for end-of-life care [54] and a decision between quantity of life and quality of life [102]. Challenging this is evidence that earlier palliative care extends and improves quality of life in serious illness, at least in metastatic cancer [103]. Evaluating whether life expectancy in PSD can be prolonged by palliative care would require a large clinical trial powered to detect such a difference.

There is evidence that palliative care increases use of home hospice services [42], which is likely to reduce healthcare costs in patients with PSD who receive palliative care. Investigating whether palliative care for PSD provides cost savings would be helpful in supporting the dissemination of palliative care into routine outpatient neurological care [97–99].

Conclusions

The symptom burden in PSD is severe. There is growing evidence that palliative care significantly improves quality of life and symptom burden for patients with PSD, and their caregivers, while improving advance care planning to better align medical care with patient values and treatment preferences [18]. Access to palliative care for patients with PSD and research into the most effective, sustainable, and scalable neuropalliative care program for these patents and caregivers is currently limited. Given the benefits of palliative care in the treatment of PSD, comparative effectiveness studies that seek to optimize neuropalliative care interventions and evaluate methods of dissemination should be a priority. An effective and scalable palliative care program for PSD will need to utilize telemedicine to gain access to patients who are geographically isolated or homebound. Additional research, education, advocacy, and clinical efforts to optimize and increase access to palliative care in neurologic disease should be a public health and health economics priority.

Supplementary Information

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Acknowledgments

A portion of the research reported in this publication was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (IHS-1408-20134). The statements presented in this publication are solely the responsibility of the author and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee. The author would like to thank our patient and caregiver advisory council, and we would like to thank Laura Palmer for her invaluable assistance in coordinating the overall study.

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Disclosures

The author declares that she has no competing interests.

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References

  • 1.Antonini A, Barone P, Marconi R, Morgante L, Zappulla S, Pontieri FE, et al. The progression of non-motor symptoms in Parkinson’s disease and their contribution to motor disability and quality of life. Journal of neurology. 2012;259(12):2621–2631. doi: 10.1007/s00415-012-6557-8. [DOI] [PubMed] [Google Scholar]
  • 2.Armstrong MJ. Diagnosis and treatment of corticobasal degeneration. Curr Treat Options Neurol. 2014;16(3):282. doi: 10.1007/s11940-013-0282-1. [DOI] [PubMed] [Google Scholar]
  • 3.Glasmacher SA, Leigh PN, Saha RA. Predictors of survival in progressive supranuclear palsy and multiple system atrophy: a systematic review and meta-analysis. J Neurol Neurosurg Psychiatry. 2017;88(5):402–411. doi: 10.1136/jnnp-2016-314956. [DOI] [PubMed] [Google Scholar]
  • 4.Katz M, Goto Y, Kluger BM, Galifianakis NB, Miyasaki JM, Kutner JS, et al. Top Ten Tips Palliative Care Clinicians Should Know About Parkinson's Disease and Related Disorders. Journal of palliative medicine. 2018;21(10):1507–1517. doi: 10.1089/jpm.2018.0390. [DOI] [PubMed] [Google Scholar]
  • 5.Miyasaki JM, Kluger B. Palliative care for Parkinson’s disease: has the time come? Current neurology and neuroscience reports. 2015;15(5):26. doi: 10.1007/s11910-015-0542-4. [DOI] [PubMed] [Google Scholar]
  • 6.Miyasaki JM, Long J, Mancini D, Moro E, Fox S, Lang A, et al. Palliative care for advanced Parkinson disease: an interdisciplinary clinic and new scale, the ESAS-PD. Parkinsonism & related disorders. 2012;18:S6–S9. doi: 10.1016/j.parkreldis.2012.06.013. [DOI] [PubMed] [Google Scholar]
  • 7.O'Sullivan SS, Massey LA, Williams DR, Silveira-Moriyama L, Kempster PA, Holton JL, et al. Clinical outcomes of progressive supranuclear palsy and multiple system atrophy. Brain. 2008;131(Pt 5):1362–1372. doi: 10.1093/brain/awn065. [DOI] [PubMed] [Google Scholar]
  • 8.Zweig YR, Galvin JE. Lewy body dementia: the impact on patients and caregivers. Alzheimer's research & therapy. 2014;6(2):21. doi: 10.1186/alzrt251. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 9.Tarolli CG, Zimmerman GA, Auinger P, McIntosh S, Horowitz RK, Kluger BM, et al. Symptom burden among individuals with Parkinson disease: a national survey. Neurology: Clinical Practice. 2020;10(1):65–72. doi: 10.1212/CPJ.0000000000000746. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 10.Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: the World Health Organization’s global perspective. Journal of pain and symptom management. 2002;24(2):91–96. doi: 10.1016/s0885-3924(02)00440-2. [DOI] [PubMed] [Google Scholar]
  • 11.Crawford GB, Price SD. Team working: palliative care as a model of interdisciplinary practice. The Medical Journal of Australia. 2003;179(6):S32. doi: 10.5694/j.1326-5377.2003.tb05575.x. [DOI] [PubMed] [Google Scholar]
  • 12.Krawczyk M, Richards N. The relevance of ‘total pain’ in palliative care practice and policy. European Journal of Palliative Care. 2018;25(3):128–130. [Google Scholar]
  • 13.McFarland NR. Diagnostic approach to atypical parkinsonian syndromes. Continuum: Lifelong Learning in Neurology. 2016;22(4 Movement Disorders):1117. [DOI] [PMC free article] [PubMed]
  • 14.Macleod AD, Grieve JK, Counsell CE. A systematic review of loss of independence in Parkinson’s disease. Journal of neurology. 2016;263(1):1–10. doi: 10.1007/s00415-015-7847-8. [DOI] [PubMed] [Google Scholar]
  • 15.Zhao YJ, Wee HL, Chan YH, Seah SH, Au WL, Lau PN, et al. Progression of Parkinson’s disease as evaluated by Hoehn and Yahr stage transition times. Movement Disorders. 2010;25(6):710–716. doi: 10.1002/mds.22875. [DOI] [PubMed] [Google Scholar]
  • 16.Mücke M, Cuhls H, Peuckmann-Post V, Minton O, Stone P, Radbruch L. Pharmacological treatments for fatigue associated with palliative care. Cochrane Database Syst Rev. 2015;2015(5):Cd006788. doi: 10.1002/14651858.CD006788.pub3. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 17.Saleem TZ, Higginson IJ, Chaudhuri KR, Martin A, Burman R, Leigh PN. Symptom prevalence, severity and palliative care needs assessment using the Palliative Outcome Scale: a cross-sectional study of patients with Parkinson’s disease and related neurological conditions. Palliat Med. 2013;27(8):722–731. doi: 10.1177/0269216312465783. [DOI] [PubMed] [Google Scholar]
  • 18.Kluger BM, Miyasaki J, Katz M, Galifianakis N, Hall K, Pantilat S, et al. Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders: a randomized clinical trial. JAMA neurology. 2020. [DOI] [PMC free article] [PubMed]
  • 19.Hermanowicz N, Jones SA, Hauser RA. Impact of non-motor symptoms in Parkinson’s disease: a PMDAlliance survey. Neuropsychiatr Dis Treat. 2019;15:2205–2212. doi: 10.2147/NDT.S213917. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 20.Herlofson K, Ongre S, Enger L, Tysnes O, Larsen J. Fatigue in early Parkinson’s disease. Minor inconvenience or major distress? European journal of neurology. 2012;19(7):963–968. doi: 10.1111/j.1468-1331.2012.03663.x. [DOI] [PubMed] [Google Scholar]
  • 21.Prakash K, Nadkarni N, Lye WK, Yong MH, Tan EK. The impact of non-motor symptoms on the quality of life of Parkinson’s disease patients: a longitudinal study. European journal of neurology. 2016;23(5):854–860. doi: 10.1111/ene.12950. [DOI] [PubMed] [Google Scholar]
  • 22.Bükki J, Nübling G, Lorenzl S. Managing advanced progressive supranuclear palsy and corticobasal degeneration in a palliative care unit: admission triggers and outcomes. American Journal of Hospice and Palliative Medicine®. 2016;33(5):477–482. doi: 10.1177/1049909114565110. [DOI] [PubMed] [Google Scholar]
  • 23.Carter JH, Stewart BJ, Lyons KS, Archbold PG. Do motor and nonmotor symptoms in PD patients predict caregiver strain and depression? Mov Disord. 2008;23(9):1211–1216. doi: 10.1002/mds.21686. [DOI] [PubMed] [Google Scholar]
  • 24.Chaudhuri KR, Schapira AH. Non-motor symptoms of Parkinson’s disease: dopaminergic pathophysiology and treatment. The Lancet Neurology. 2009;8(5):464–474. doi: 10.1016/S1474-4422(09)70068-7. [DOI] [PubMed] [Google Scholar]
  • 25.Chaudhuri KR, Prieto-Jurcynska C, Naidu Y, Mitra T, Frades-Payo B, Tluk S, et al. The nondeclaration of nonmotor symptoms of Parkinson’s disease to health care professionals: an international study using the nonmotor symptoms questionnaire. Mov Disord. 2010;25(6):704–709. doi: 10.1002/mds.22868. [DOI] [PubMed] [Google Scholar]
  • 26.Radicati FG, Martin PM, Fossati C, Chaudhuri KR, Torti M, Blazquez CR, et al. Non motor symptoms in progressive supranuclear palsy: prevalence and severity. npj Parkinson’s Disease. 2017;3(1):1–6. doi: 10.1038/s41531-017-0037-x. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 27.Wiblin L, Lee M, Burn D. Palliative care and its emerging role in multiple system atrophy and progressive supranuclear palsy. Parkinsonism & related disorders. 2017;34:7–14. doi: 10.1016/j.parkreldis.2016.10.013. [DOI] [PubMed] [Google Scholar]
  • 28.Marsh L. Depression and Parkinson’s disease: current knowledge. Current neurology and neuroscience reports. 2013;13(12):409. doi: 10.1007/s11910-013-0409-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 29.Ravina B, Camicioli R, Como P, Marsh L, Jankovic J, Weintraub D, et al. The impact of depressive symptoms in early Parkinson disease. Neurology. 2007;69(4):342–347. doi: 10.1212/01.wnl.0000268695.63392.10. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 30.Shulman L, Taback RL, Rabinstein A, Weiner WJ. Non-recognition of depression and other non-motor symptoms in Parkinson’s disease. Parkinsonism & related disorders. 2002;8(3):193–197. doi: 10.1016/s1353-8020(01)00015-3. [DOI] [PubMed] [Google Scholar]
  • 31.Weintraub D, Moberg PJ, Duda JE, Katz IR, Stern MB. Recognition and treatment of depression in Parkinson’s disease. Journal of geriatric psychiatry and neurology. 2003;16(3):178–183. doi: 10.1177/0891988703256053. [DOI] [PubMed] [Google Scholar]
  • 32.Belvisi D, Berardelli I, Ferrazzano G, Costanzo M, Corigliano V, Fabbrini G, et al. The clinical correlates of suicidal ideation in Parkinson’s disease. Parkinsonism & related disorders. 2019;63:54–59. doi: 10.1016/j.parkreldis.2019.02.047. [DOI] [PubMed] [Google Scholar]
  • 33.Kostić VS, Pekmezović T, Tomić A, Ječmenica-Lukić M, Stojković T, Špica V, et al. Suicide and suicidal ideation in Parkinson’s disease. Journal of the neurological sciences. 2010;289(1-2):40–43. doi: 10.1016/j.jns.2009.08.016. [DOI] [PubMed] [Google Scholar]
  • 34.Martin SC. Relational issues within couples coping with Parkinson’s disease: Implications and ideas for family-focused care. Journal of family nursing. 2016;22(2):224–251. doi: 10.1177/1074840716640605. [DOI] [PubMed] [Google Scholar]
  • 35.Martinez-Martin P, Macaulay D, Jalundhwala YJ, Mu F, Ohashi E, Marshall T, et al. The long-term direct and indirect economic burden among Parkinson’s disease caregivers in the United States. Movement Disorders. 2019;34(2):236–245. doi: 10.1002/mds.27579. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 36.Kim JH, McCann CM. Communication impairments in people with progressive supranuclear palsy: A tutorial. J Commun Disord. 2015;56:76–87. doi: 10.1016/j.jcomdis.2015.06.002. [DOI] [PubMed] [Google Scholar]
  • 37.Koo BB, Chow CA, Shah DR, Khan FH, Steinberg B, Derlein D, et al. Demoralization in Parkinson disease. Neurology. 2018;90(18):e1613–e1617. doi: 10.1212/WNL.0000000000005425. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 38.Maffoni M, Giardini A, Pierobon A, Ferrazzoli D, Frazzitta G. Stigma experienced by Parkinson’s disease patients: a descriptive review of qualitative studies. Parkinson’s Disease. 2017;2017. [DOI] [PMC free article] [PubMed]
  • 39.Sjöström AC, Holmberg B, Strang P. Parkinson-plus patients--an unknown group with severe symptoms. J Neurosci Nurs. 2002;34(6):314–319. doi: 10.1097/01376517-200212000-00005. [DOI] [PubMed] [Google Scholar]
  • 40.Wiblin L, Durcan R, Lee M, Brittain K. The Importance of Connection to Others in QoL in MSA and PSP. Parkinsons Dis. 2017;2017:5283259. doi: 10.1155/2017/5283259. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 41.Snell K, Pennington S, Lee M, Walker R. The place of death in Parkinson’s disease. Age Ageing. 2009;38(5):617–619. doi: 10.1093/ageing/afp123. [DOI] [PubMed] [Google Scholar]
  • 42.Tuck KK, Zive DM, Schmidt TA, Carter J, Nutt J, Fromme EK. Life-sustaining treatment orders, location of death and co-morbid conditions in decedents with Parkinson’s disease. Parkinsonism & related disorders. 2015;21(10):1205–1209. doi: 10.1016/j.parkreldis.2015.08.021. [DOI] [PubMed] [Google Scholar]
  • 43.Moens K, Houttekier D, Van den Block L, Harding R, Morin L, Marchetti S, et al. Place of death of people living with Parkinson’s disease: a population-level study in 11 countries. BMC Palliat Care. 2015;14:28. doi: 10.1186/s12904-015-0021-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 44.Hunt KJ, Shlomo N, Addington-Hall J. End-of-life care and achieving preferences for place of death in England: results of a population-based survey using the VOICES-SF questionnaire. Palliat Med. 2014;28(5):412–421. doi: 10.1177/0269216313512012. [DOI] [PubMed] [Google Scholar]
  • 45.Armstrong MJ, Alliance S, Corsentino P, DeKosky ST, Taylor A. Cause of Death and End-of-Life Experiences in Individuals with Dementia with Lewy Bodies. J Am Geriatr Soc. 2019;67(1):67–73. doi: 10.1111/jgs.15608. [DOI] [PubMed] [Google Scholar]
  • 46.Williams DR, Litvan I. Parkinsonian syndromes. Continuum (Minneap Minn). 2013;19(5 Movement Disorders):1189-1212. [DOI] [PMC free article] [PubMed]
  • 47.Goy ER, Carter JH, Ganzini L. Parkinson disease at the end of life: caregiver perspectives. Neurology. 2007;69(6):611–612. doi: 10.1212/01.wnl.0000266665.82754.61. [DOI] [PubMed] [Google Scholar]
  • 48.Pennington S, Snell K, Lee M, Walker R. The cause of death in idiopathic Parkinson’s disease. Parkinsonism & related disorders. 2010;16(7):434–437. doi: 10.1016/j.parkreldis.2010.04.010. [DOI] [PubMed] [Google Scholar]
  • 49.Sokol LL, Young MJ, Paparian J, Kluger BM, Lum HD, Besbris J, et al. Advance care planning in Parkinson’s disease: ethical challenges and future directions. NPJ Parkinsons Dis. 2019;5:24. doi: 10.1038/s41531-019-0098-0. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 50.Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. Journal of pain and symptom management. 2017;53(5):821-832. e1. [DOI] [PMC free article] [PubMed]
  • 51.deLima TJ, Sanchez-Reilly S, Bernacki R, O'Neill L, Morrison LJ, Kapo J, et al. Advance care planning in cognitively impaired older adults. Journal of the American Geriatrics Society. 2018;66(8):1469–1474. doi: 10.1111/jgs.15471. [DOI] [PubMed] [Google Scholar]
  • 52.Mendlik MT, McFarlin J, Kluger BM, Vaughan CL, Phillips JN, Jones CA. Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Neurologic Illnesses. J Palliat Med. 2019;22(2):193–198. doi: 10.1089/jpm.2018.0617. [DOI] [PubMed] [Google Scholar]
  • 53.Jordan SR, Kluger B, Ayele R, Brungardt A, Hall A, Jones J, et al. Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners. Annals of Palliative Medicine. 2020;9(Suppl 1):S63–S74. doi: 10.21037/apm.2019.09.10. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 54.Bouça-Machado R, Titova N, Chaudhuri KR, Bloem BR, Ferreira JJ. Palliative Care for Patients and Families With Parkinson’s Disease. Int Rev Neurobiol. 2017;132:475–509. doi: 10.1016/bs.irn.2017.02.017. [DOI] [PubMed] [Google Scholar]
  • 55.Tuck KK, Brod L, Nutt J, Fromme EK. Preferences of patients with Parkinson’s disease for communication about advanced care planning. American Journal of Hospice and Palliative Medicine®. 2015;32(1):68–77. doi: 10.1177/1049909113504241. [DOI] [PubMed] [Google Scholar]
  • 56.Walker RW, Churm D, Dewhurst F, Samuel M, Ramsell A, Lawrie C, et al. Palliative care in people with idiopathic Parkinson’s disease who die in hospital. BMJ Supportive & Palliative Care. 2014;4(1):64-67. [DOI] [PubMed]
  • 57.Kluger BM, Shattuck J, Berk J, Sebring K, Jones W, Brunetti F, et al. Defining Palliative Care Needs in Parkinson’s Disease. Mov Disord Clin Pract. 2019;6(2):125–131. doi: 10.1002/mdc3.12702. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 58.D'Amelio M, Terruso V, Palmeri B, Di Benedetto N, Famoso G, Cottone P, et al. Predictors of caregiver burden in partners of patients with Parkinson’s disease. Neurol Sci. 2009;30(2):171–174. doi: 10.1007/s10072-009-0024-z. [DOI] [PubMed] [Google Scholar]
  • 59.Kumar H, Ansari S, Kumar V, Barry HD, Tahir A. Severity of Caregiver Stress in Relation to Severity of Disease in Persons with Parkinson’s. Cureus. 2019;11(4):e4358. doi: 10.7759/cureus.4358. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 60.Mosley PE, Moodie R, Dissanayaka N. Caregiver Burden in Parkinson Disease: A Critical Review of Recent Literature. J Geriatr Psychiatry Neurol. 2017;30(5):235–252. doi: 10.1177/0891988717720302. [DOI] [PubMed] [Google Scholar]
  • 61.Oguh O, Kwasny M, Carter J, Stell B, Simuni T. Caregiver strain in Parkinson’s disease: national Parkinson Foundation Quality Initiative study. Parkinsonism Relat Disord. 2013;19(11):975–979. doi: 10.1016/j.parkreldis.2013.06.015. [DOI] [PubMed] [Google Scholar]
  • 62.Macchi ZA, Koljack CE, Miyasaki JM, Katz M, Galifianakis N, Prizer LP, et al. Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach. Annals of palliative medicine. 2019. [DOI] [PubMed]
  • 63.Vatter S, McDonald KR, Stanmore E, Clare L, Leroi I. Multidimensional Care Burden in Parkinson-Related Dementia. J Geriatr Psychiatry Neurol. 2018;31(6):319–328. doi: 10.1177/0891988718802104. [DOI] [PubMed] [Google Scholar]
  • 64.Bhidayasiri R, Jitkritsadakul O, Colosimo C. Nocturnal manifestations of atypical parkinsonian disorders. J Parkinsons Dis. 2014;4(2):223–36. doi: 10.3233/JPD-130280. [DOI] [PubMed] [Google Scholar]
  • 65.Bruno V, Mancini D, Ghoche R, Arshinoff R, Miyasaki JM. High prevalence of physical and sexual aggression to caregivers in advanced Parkinson’s disease. Experience in the Palliative Care Program. Parkinsonism Relat Disord. 2016;24:141–142. doi: 10.1016/j.parkreldis.2016.01.010. [DOI] [PubMed] [Google Scholar]
  • 66.Fox S, Azman A, Timmons S. Palliative care needs in Parkinson’s disease: focus on anticipatory grief in family carers. Annals of Palliative Medicine. 2020;9(Supplement 1):34–43. doi: 10.21037/apm.2020.02.04. [DOI] [PubMed] [Google Scholar]
  • 67.Fox S, Azman A, Timmons S. Palliative care needs in Parkinson’s disease: focus on anticipatory grief in family carers. Ann Palliat Med. 2020;9(Suppl 1):S34–S43. doi: 10.21037/apm.2020.02.04. [DOI] [PubMed] [Google Scholar]
  • 68.Boersma I, Jones J, Coughlan C, Carter J, Bekelman D, Miyasaki J, et al. Palliative Care and Parkinson’s Disease: Caregiver Perspectives. J Palliat Med. 2017;20(9):930–938. doi: 10.1089/jpm.2016.0325. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 69.Brizzi K, Creutzfeldt CJ. Neuropalliative Care: A Practical Guide for the Neurologist. Semin Neurol. 2018;38(5):569–575. doi: 10.1055/s-0038-1668074. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 70.Holden SK, Koljack CE, Prizer LP, Sillau SH, Miyasaki JM, Kluger BM. Measuring quality of life in palliative care for Parkinson’s disease: A clinimetric comparison. Parkinsonism Relat Disord. 2019;65:172–177. doi: 10.1016/j.parkreldis.2019.06.018. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 71.Waller A, Girgis A, Currow D, Lecathelinais C. Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals. Palliat Med. 2008;22(8):956–964. doi: 10.1177/0269216308098797. [DOI] [PubMed] [Google Scholar]
  • 72.Bischoff KE, Sudore R, Miao Y, Boscardin WJ, Smith AK. Advance care planning and the quality of end-of-life care in older adults. J Am Geriatr Soc. 2013;61(2):209–214. doi: 10.1111/jgs.12105. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 73.Flint LA, David DJ, Smith AK. Rehabbed to death. N Engl J Med. 2019;380(5):408–9. doi: 10.1056/NEJMp1809354. [DOI] [PubMed] [Google Scholar]
  • 74.Levinson W, Kallewaard M, Bhatia RS, Wolfson D, Shortt S, Kerr EA. ‘Choosing Wisely’: a growing international campaign. BMJ Qual Saf. 2015;24(2):167–174. doi: 10.1136/bmjqs-2014-003821. [DOI] [PubMed] [Google Scholar]
  • 75.Committee AGSE, Practice C. Committee MoC. American Geriatrics Society feeding tubes in advanced dementia position statement. Journal of the American Geriatrics Society. 2014;62(8):1590–1593. doi: 10.1111/jgs.12924. [DOI] [PubMed] [Google Scholar]
  • 76.Lippert WC, Chadha R, Sweigart JR. Things We Do for No Reason: The Use of Thickened Liquids in Treating Hospitalized Adult Patients with Dysphagia. Journal of Hospital Medicine. 2019;5:315–317. doi: 10.12788/jhm.3141. [DOI] [PubMed] [Google Scholar]
  • 77.Workgroup ACW. American Geriatrics Society identifies another five things that healthcare providers and patients should question. Journal of the American Geriatrics Society. 2014;62(5):950–960. doi: 10.1111/jgs.12770. [DOI] [PubMed] [Google Scholar]
  • 78.Paladino J, Bernacki R, Neville BA, Kavanagh J, Miranda SP, Palmor M, et al. Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program. JAMA Oncol. 2019;5(6):801–809. doi: 10.1001/jamaoncol.2019.0292. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 79.Factor SA, Bennett A, Hohler AD, Wang D, Miyasaki JM. Quality improvement in neurology: Parkinson disease update quality measurement set: Executive summary. Neurology. 2016;86(24):2278–2283. doi: 10.1212/WNL.0000000000002670. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 80.Schulz R, Boerner K, Klinger J, Rosen J. Preparedness for death and adjustment to bereavement among caregivers of recently placed nursing home residents. J Palliat Med. 2015;18(2):127–133. doi: 10.1089/jpm.2014.0309. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 81.Busis NA, Shanafelt TD, Keran CM, Levin KH, Schwarz HB, Molano JR, et al. Burnout, career satisfaction, and well-being among US neurologists in 2016. Neurology. 2017;88(8):797–808. doi: 10.1212/WNL.0000000000003640. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 82.Henderson AC. Person-centred health care: Balancing the welfare of clinicians and patients by Stephen Buetow. Journal of Public and Nonprofit Affairs. 2017;3(3):336–338. [Google Scholar]
  • 83.Zanatta F, Maffoni M, Giardini A. Resilience in palliative healthcare professionals: a systematic review. Support Care Cancer. 2020;28(3):971–978. doi: 10.1007/s00520-019-05194-1. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 84.Buss MK, Rock LK, McCarthy EP. Understanding Palliative Care and Hospice: A Review for Primary Care Providers. Mayo Clin Proc. 2017;92(2):280–286. doi: 10.1016/j.mayocp.2016.11.007. [DOI] [PubMed] [Google Scholar]
  • 85.Phillips LJ. Dropping the bomb: the experience of being diagnosed with Parkinson’s disease. Geriatr Nurs. 2006;27(6):362–369. doi: 10.1016/j.gerinurse.2006.10.012. [DOI] [PubMed] [Google Scholar]
  • 86.Tarolli CG, Holloway RG. Palliative care and Parkinson’s disease: outpatient needs and models of care over the disease trajectory. Ann Palliat Med. 2020;9(Suppl 1):S44–S51. doi: 10.21037/apm.2019.11.11. [DOI] [PubMed] [Google Scholar]
  • 87.Galifianakis NB, Katz M, Kluger BM. Practical Implementation Strategies for Outpatient Neurology Palliative Care. Neuropalliative Care: Springer; 2019. p. 293-301.
  • 88.Lupu D, Quigley L, Mehfoud N, Salsberg ES. The Growing Demand for Hospice and Palliative Medicine Physicians: Will the Supply Keep Up? J Pain Symptom Manage. 2018;55(4):1216–1223. doi: 10.1016/j.jpainsymman.2018.01.011. [DOI] [PubMed] [Google Scholar]
  • 89.Creutzfeldt CJ, Robinson MT, Holloway RG. Neurologists as primary palliative care providers: communication and practice approaches. Neurology: Clinical Practice. 2016;6(1):40–48. doi: 10.1212/CPJ.0000000000000213. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 90.Back AL, Fromme EK, Meier DE. Training Clinicians with Communication Skills Needed to Match Medical Treatments to Patient Values. J Am Geriatr Soc. 2019;67(S2):S435–S441. doi: 10.1111/jgs.15709. [DOI] [PubMed] [Google Scholar]
  • 91.Mehta AK, Najjar S, May N, Shah B, Blackhall L. A Needs Assessment of Palliative Care Education among the United States Adult Neurology Residency Programs. J Palliat Med. 2018;21(10):1448–1457. doi: 10.1089/jpm.2018.0191. [DOI] [PubMed] [Google Scholar]
  • 92.Oliver D, Veronese S. Specialist palliative care for Parkinson’s disease. Ann Palliat Med. 2020;9(Suppl 1):S52–S62. doi: 10.21037/apm.2019.12.01. [DOI] [PubMed] [Google Scholar]
  • 93.Müller J, Wenning GK, Jellinger K, McKee A, Poewe W, Litvan I. Progression of Hoehn and Yahr stages in Parkinsonian disorders: a clinicopathologic study. Neurology. 2000;55(6):888–891. doi: 10.1212/wnl.55.6.888. [DOI] [PubMed] [Google Scholar]
  • 94.Beck CA, Beran DB, Biglan KM, Boyd CM, Dorsey ER, Schmidt PN, et al. National randomized controlled trial of virtual house calls for Parkinson disease. Neurology. 2017;89(11):1152–1161. doi: 10.1212/WNL.0000000000004357. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 95.Korn RE, Wagle Shukla A, Katz M, Keenan HT, Goldenthal S, Auinger P, et al. Virtual visits for Parkinson disease: A multicenter noncontrolled cohort. Neurol Clin Pract. 2017;7(4):283–295. doi: 10.1212/CPJ.0000000000000371. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 96.Willis AW, Schootman M, Evanoff BA, Perlmutter JS, Racette BA. Neurologist care in Parkinson disease: a utilization, outcomes, and survival study. Neurology. 2011;77(9):851–857. doi: 10.1212/WNL.0b013e31822c9123. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 97.Kelley AS, Deb P, Du Q, Aldridge Carlson MD, Morrison RS. Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Aff (Millwood). 2013;32(3):552–561. doi: 10.1377/hlthaff.2012.0851. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 98.Mathew C, Hsu AT, Prentice M, Lawlor P, Kyeremanteng K, Tanuseputro P, et al. Economic evaluations of palliative care models: A systematic review. Palliat Med. 2020;34(1):69–82. doi: 10.1177/0269216319875906. [DOI] [PubMed] [Google Scholar]
  • 99.Morrison RS, Dietrich J, Ladwig S, Quill T, Sacco J, Tangeman J, et al. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood). 2011;30(3):454–463. doi: 10.1377/hlthaff.2010.0929. [DOI] [PubMed] [Google Scholar]
  • 100.Kluger BM, Katz M, Galifianakis N, Pantilat SZ, Kutner JS, Sillau S, et al. Does outpatient palliative care improve patient-centered outcomes in Parkinson’s disease: Rationale, design, and implementation of a pragmatic comparative effectiveness trial. Contemporary clinical trials. 2019;79:28–36. doi: 10.1016/j.cct.2019.02.005. [DOI] [PubMed] [Google Scholar]
  • 101.Meghani SH, Hinds PS. Policy brief: the Institute of Medicine report Dying in America: Improving quality and honoring individual preferences near the end of life. Nurs Outlook. 2015;63(1):51–59. doi: 10.1016/j.outlook.2014.11.007. [DOI] [PubMed] [Google Scholar]
  • 102.Hanratty B, Hibbert D, Mair F, May C, Ward C, Corcoran G, et al. Doctors’ understanding of palliative care. Palliat Med. 2006;20(5):493–497. doi: 10.1191/0269216306pm1162oa. [DOI] [PubMed] [Google Scholar]
  • 103.Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. New England Journal of Medicine. 2010;363(8):733–742. doi: 10.1056/NEJMoa1000678. [DOI] [PubMed] [Google Scholar]

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