“No One Can Tell Me How Parkinson’s Disease Will Unfold”: A Mixed Methods Case Study on Palliative Care for People with Parkinson’s Disease and Their Family Caregivers

Abstract

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

A systematic practice review: Providing palliative care for people with Parkinson’s disease and their caregivers

“…The patient must be ready for it, which can depend on age, personality and stage of disease: patients can be more prone to discuss those aspects when the illness course has severely affected their lives. 21,24,36 Patients and relatives often shy away from end-of-life discussions and prefer to adopt a ‘living in the moment’ attitude. 24,36…”

“…21,24,36 Patients and relatives often shy away from end-of-life discussions and prefer to adopt a 'living in the moment' attitude. 24,36 In case cognitive impairment occurs or apathy is present as a symptom of the disease, this can deprive the patient of the ability to make decisions for themselves so early involvement of advance care planning is recommended by some authors. 37,38 A list of symptoms and problems, which may appear alongside hallmark PD symptoms, could serve as potential indicators for initiating advance care planning discussions.…”

“…The lack of cohesion between services leads to uncertainty about the support services available and resulted in frustration for participants and affected caregivers' ability to care for the person in need of care. 21,24 The dispersion of responsibilities between the health professionals involved leads to uncoordinated and patchy access to palliative and clinical care. [21][22][23] Caregivers should be included in discussions with the patient's permission, especially as they often want to make plans for the later stages of care earlier than the patients.…”

More than medications: a patient-centered assessment of Parkinson’s disease care needs during hospitalization

“…PCC places patients at the center of the healthcare decision-making process and recognizes the importance of their individual preferences and goals ( Berwick, 2009 ; Institute of Medicine, 2014 ). Growing awareness of PCC delivery has resulted in the establishment of specialized multidisciplinary teams as the gold standard of outpatient care for PD, as well as the increasing application of palliative care, a traditionally team-based model of care, for the management of the physical, emotional, and spiritual needs of PwPs ( Eggers et al, 2018 ; Connor et al, 2019 ; Vlaanderen et al, 2019 ; Bhidayasiri et al, 2020 ; Kluger et al, 2020 ; Rajan et al, 2020 ; Lennaerts-Kats et al, 2022 ).…”

Social work scope of practice with Parkinson's disease: A qualitative study

“…Over the past decade, there has been increasing focus on best care practices in the field of neurology and PD more specifically. PD care has been among the first to establish multidisciplinary care (e.g., neurologist, nurse, occupational therapist, physiotherapist, social worker) as the optimal model of care delivery and more recently through increased exploration of the palliative (specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness) (“Mayo Clinic”, 2023) approach to care (Lennaerts-Kats et al, 2022; Miyasaki & Kluger, 2015; Rajan et al, 2020). Parkinson's Foundation has played a critical role in the advocacy and advancement of both approaches to the care of people with PD.…”