Managing palliative care in Parkinson’s disease from diagnosis to end-stage disease: what the clinician should know

2013 ◽  
Vol 3 (2) ◽  
pp. 169-183 ◽  
Author(s):  
Johan Lökk ◽  
Seyed-Mohammad Fereshtehnejad
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Stage Disease ◽  
End Stage

Palliative Care in End-Stage Neurological Disease

2018 ◽  
Author(s):  
Tobias Walbert ◽  
Joel Phillips
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Symptom Management ◽  
Neurological Diseases ◽  
The United States ◽  
Pain Syndromes ◽  
End Stage ◽  
Chronic Course

Neurological disorders are among the leading causes of morbidity and death worldwide. Although stroke is the third leading cause of death, after heart disease and cancer, in the United States, other neurological diseases have a more chronic course that leads to protracted disability, morbidity, and death. Unfortunately, for many of these disorders, such as Parkinson’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS), no cure is currently available. Patients suffer from dysarthria, dysphagia, muscle spasm, bladder and bowel difficulties, pain syndromes, and fatigue. Adequate symptom management and palliative care have the potential to maintain good quality of life for patients for as long as possible and ease the burden on both caregivers and patients. This chapter outlines the principles of clinical symptom management for some of the most important neurological diseases, specifically ALS, stroke, MS, and Parkinson’s disease.

scholarly journals Prognostic predictors relevant to end-of-life palliative care in Parkinson’s disease and related disorders: a systematic review

2021 ◽  
pp. jnnp-2020-323939
Author(s):  
Umer Akbar ◽  
Robert Brett McQueen ◽  
Julienne Bemski ◽  
Julie Carter ◽  
Elizabeth R Goy ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
End Of Life ◽  
Cause Of Death ◽  
Quantitative Research ◽  
Motor Dysfunction ◽  
Clinical Markers ◽  
Hospice Referral ◽  
Survey Responses

Parkinson’s disease and related disorders (PDRD) are the second most common neurodegenerative disease and a leading cause of death. However, patients with PDRD receive less end-of-life palliative care (hospice) than other illnesses, including other neurologic illnesses. Identification of predictors of PDRD mortality may aid in increasing appropriate and timely referrals. To systematically review the literature for causes of death and predictors of mortality in PDRD to provide guidance regarding hospice/end-of-life palliative care referrals. We searched MEDLINE, PubMed, EMBASE and CINAHL databases (1970–2020) of original quantitative research using patient-level, provider-level or caregiver-level data from medical records, administrative data or survey responses associated with mortality, prognosis or cause of death in PDRD. Findings were reviewed by an International Working Group on PD and Palliative Care supported by the Parkinson’s Foundation. Of 1183 research articles, 42 studies met our inclusion criteria. We found four main domains of factors associated with mortality in PDRD: (1) demographic and clinical markers (age, sex, body mass index and comorbid illnesses), (2) motor dysfunction and global disability, (3) falls and infections and (4) non-motor symptoms. We provide suggestions for consideration of timing of hospice/end-of-life palliative care referrals. Several clinical features of advancing disease may be useful in triggering end-of-life palliative/hospice referral. Prognostic studies focused on identifying when people with PDRD are nearing their final months of life are limited. There is further need for research in this area as well as policies that support need-based palliative care for the duration of PDRD.

scholarly journals The Need for Palliative Care in Primary Health Care

2018 ◽  
Vol 1 (3) ◽  
pp. 103
Author(s):  
Nita Arisanti ◽  
Dany Hilmanto ◽  
Elsa Pudji Setiawati ◽  
Veranita Pandia
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Primary Health Care ◽  
Service Providers ◽  
Primary Health ◽  
Stage Disease ◽  
Family Perceptions ◽  
Dying At Home ◽  
End Stage ◽  
At Home

.................... The access to palliative care in ends of life is one of the patients’ rights. Therefore it should be delivered into every level of health care for patients and family members. In some countries, palliative care is more frequent delivered in hospitals compare to primary health care, even though primary health care has a significant role in providing palliative care. Most families prefer to care for patients at home rather than in the hospital................................... The implementation of palliative care in Indonesia is still very limited to certain hospitals, even though doctors in primary care have great potential to offer such care to people in the community. Some of the factors contributing to the implementation are cultural and socioeconomic factors, patient and family perceptions, attitudes of service providers, lack of trained personnel, distribution of palliative care units, lack of consolidation and limited funds. As a result, patients with end-stage disease die in hospitals without receiving palliative care or dying at home with inadequate support................

Impact of specialist palliative care on coping with Parkinson’s disease: patients and carers

2018 ◽  
Vol 8 (2) ◽  
pp. 180-183 ◽  
Author(s):  
Nathan J Badger ◽  
Dorothy Frizelle ◽  
Debi Adams ◽  
Miriam J Johnson
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Interpretative Phenomenological Analysis ◽  
Specialist Palliative Care ◽  
Advanced Parkinson’S Disease ◽  
Care Access ◽  
North East ◽  
Palliative Care Services ◽  
Positive Outlook

ObjectivesUK guidelines recommend palliative care access for people with Parkinson’s disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients’ and carers’ coping with Parkinson’s disease.MethodsSemistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson’s disease (n=3), and carers of people with Parkinson’s disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson’s disease service in North East England.ResultsAccess to specialist palliative care helped participants cope with some aspects of advanced Parkinson’s disease. Three superordinate themes were developed:‘ managing uncertainty’, ‘impacts on the self’ and ‘specialist palliative care maintaining a positive outlook’.ConclusionsSpecialist palliative care helped patients and carers cope with advanced Parkinson’s disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson’s disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson’s disease.

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

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.

Would people with Parkinson's disease benefit from palliative care?

2006 ◽  
Vol 20 (2) ◽  
pp. 87-94 ◽  
Author(s):  
Peter L Hudson ◽  
Christine Toye ◽  
Linda J Kristjanson
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease
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