More palliative care and access to it needed for Parkinson’s, study finds

Advance planning crucial for maintaining patient and family's quality of life

Steve Bryson, PhD avatar

by Steve Bryson, PhD |

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People with Parkinson’s disease and their caregivers need more timely information on what palliative care services are available and how to access them, along with more of such services, according to a review of published studies.

Palliative care refers to specialized medical care for people living with a serious and incurable illness, with the goal of limiting suffering and optimizing quality of life.

Its researchers recommended that care management plans, tailored to an individual, be developed by a multidisciplinary team of healthcare providers with the involvement and support of caregivers, particularly before the onset of cognitive decline. Data was limited, however, regarding the best timing for introducing palliative care.

“Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson’s disease and their caregivers,” the researchers, at sites across Europe, wrote.

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People with advanced Parkinson’s often in hospitals without palliative care

The study, “A systematic practice review: Providing palliative care for people with Parkinson’s disease and their caregivers,” was published in the journal Palliative Medicine.

Parkinson’s is primarily known for the disease’s motor symptoms, such as tremors, abnormally slow movements, stiffness, and difficulty with balance and walking. But nonmotor Parkinson’s symptoms also occur, including cognitive impairment, depression and anxiety, sleep disorders, trouble swallowing, and constipation.

The neurological disorder usually affects people later in life and is progressive, meaning symptoms worsen over time. Because disease presentation can vary widely from patient to patient, predicting long-term outcomes and identifying end stages can be challenging.

In many cases, however, people with Parkinson’s are hospitalized without the benefits of palliative care and often die in hospital settings.

“Available services lack … specific Movement Disorder’s expertise and have primarily an oncology [cancer] focus,” the researchers wrote, adding that “despite the benefits that palliative care could offer, there is no consensus on how it should be delivered.”

Collectively, the scientists reviewed 62 published studies, examining current evidence on palliative care for people with Parkinson’s and their caregivers. Their stated goal was “to provide healthcare professionals with a pragmatic overview of approaches and recommendations,” allowing for “better palliative care.”

They focused on four topics: professional healthcare providers and care coordination, advanced care planning, the involvement of and care for informal (family) caregivers, and triggers for palliative care referral.

Caregivers, patients, and professionals should be involved in care plans

Regarding professional healthcare providers and care coordination, there was strong evidence that Parkinson’s patients and their caregivers need clearer and more timely information on available services and how to access them, and information defining the roles of health and social care providers.

The palliative team should include professionals from different disciplines, including physicians, nurses, social care workers, psychologists, spiritual care workers, occupational therapists, and dietitians. Palliative care awareness and education also should be provided, and individualized care plans, particularly at the end of life, must be developed.

But guidelines were lacking as to when palliative care should start.

“The best timing to introduce palliative care is yet unidentified, and no consensus on clear cut-off points or triggers for palliative care referral have been identified,” the researchers noted.

Advance care planning should take place before cognitive decline and be discussed when patients and caregivers are ready. Moderate evidence supported the severity of motor and nonmotor symptoms as a trigger to begin advanced care, and evidence strongly supported not forcing but also not avoiding difficult conversations.

There was, however, uncertainty about when and how many people should engage in advance care discussions, how fear of death may influence such discussions, and which healthcare providers have the authority to participate.

It was strongly recommended that caregivers, who are often overlooked, be recognized for their crucial role in patient care, and that family caregivers need support from social and bereavement services and healthcare teams. Caregiver experiences and support needs must be regularly addressed and integrated into care and end-of-life discussions, the researchers noted.

Conversations about end-of-life wishes should not be avoided, and patients should not be allowed to stay at home if they choose.

“One study also highlights the challenges faced by individuals without formal caregivers, making it more challenging for them to access palliative care,” the team wrote.

Regarding triggers for palliative care referral, strong evidence supported investigations into the impact of the disease on patients and caregivers, and the involvement of a multidisciplinary team to address a patient’s needs. As a patient’s motor and nonmotor problems reach advanced stages, palliative care should be introduced and focus on the patient’s and family’s quality of life.

“Further research is warranted to develop specific interventions aimed at enhancing symptom management, particularly towards the end-of-life phase for people with Parkinson’s disease,” the researchers concluded. “Strategies for fostering the seamless integration of palliative care into the care continuum” also need further work.

“These efforts collectively aim to provide comprehensive, compassionate and patient-centred care for people with Parkinson’s disease and their caregivers,” they added.