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“In Parkinson’s disease, as in many other progressive pathologies, we are, in fact, immediately in a palliative situation, underlines Professor Marc Verny (Pitie-Salpêtrière hospital, Paris). Treatments improve symptoms and quality of life but are not curative. It is therefore necessary to explain early to the patient that the treatment will have to be adapted as the disease progresses. » But advance care planning is not always easy. The therapeutic plan must be constantly re-examined with the patient and those around him.
After a certain number of years, the evolution towards cognitive worsening and the appearance of motor complications mark the entry into the stage of decline of the disease and it is at this moment that we must associate without delay palliative care caregivers. The multidisciplinary approach (neurologists, geriatricians, palliative care teams, pharmacists, etc.) is the gold standard for palliative care for both patients and those around them.
« A problem that we encounter in a significant proportion is that patients with advanced Parkinson’s disease find themselves in nursing homes, pointe le Pr Verny. How do nursing homes manage to adapt to the needs of these patients who have the particularity of combining both motor and cognitive difficulties with very specific needs? An interesting example is that of Dr Mélissa Tir (neurologist at Amiens University Hospital) who created a mobile intervention team in nursing homes for Parkinson’s patients. continues the neuro-geriatrician. CThis team can intervene to train staff and manage possible therapeutic changes. It is important to enforce the regularity of taking medications as well as their frequency (often 4 doses/day and sometimes more).
An unpredictable development
Another difficulty in determining when to broach the subject of end of life with the patient and those close to them is, of course, the difficult to predict course of the illness.
« However, we can differentiate between Parkinson’s patients who started their disease before the age of 75 (young people) and those with a late onset (75 years and over). In patients with young onset, the disorders evolve for many years before reaching a stage of decline and the initial complications are mainly motoric. In patients with late onset, motor complications are rarer. On the other hand, cognitive disorders occur more quickly and are more severe. underlines Professor Marc Verny. With therapeutic progress, we can now have an evolution of the disease over around twenty years. It is difficult to predict the patient’s outcome. Variations can be explained by comorbidities, management, early treatment with L-dopa, etc.
Treatments to adapt
“When a more complicated phase occurs, it is important to review the therapeutic objective and sometimes call on a second-line treatment, such as deep brain stimulation, in young subjects. These implantations tend to become rarer since the arrival of apomorphine pumps and intraintestinal levodopa pumps. explains the geriatrician.
Swallowing disorders at the end of life prevent the taking of oral medications and a total discontinuation of dopatherapy must be avoided at all costs. Patients are improved by subcutaneous injections of apomorphine (Apokinon), which helps reduce akinesia and hypertonia.
“Geriatricians are sometimes hesitant to take care of these patients. However, they are very well placed to manage non-motor disorders, which have a significant impact on quality of life (orthostatic hypotension, constipation, hallucinations, depression, cognitive disorders, etc.),” concludes Professor Verny.
Interview with Professor Marc Verny (Pitie-Salpêtrière hospital, Paris)
What are some innovative therapies currently being researched for the treatment of Parkinson’s disease, and how might they change the standard of care in the future?
Great! Here are some potential questions for your interview:
1. What are the current treatment options for patients diagnosed with Parkinson’s disease, and how do these treatments aim to manage symptoms and improve quality of life?
2. In what ways can advance care planning be challenging for patients with Parkinson’s disease and their loved ones? How can healthcare professionals facilitate these discussions?
3. Can you discuss the role of palliative care in managing end-of-life care for Parkinson’s patients? How does it differ from traditional medical care?
4. How can nursing homes and other long-term care facilities adapt to the specific needs of Parkinson’s patients who experience cognitive and motor difficulties?
5. What factors can influence the course of Parkinson’s disease, and how can healthcare professionals predict a patient’s prognosis?
6. How do you manage treatment complications, such as swallowing disorders and medication intolerance, in advanced Parkinson’s patients?
7. Can you discuss the role of geriatricians in managing the complex needs of Parkinson’s patients, particularly those related to non-motor symptoms?
8. How do you ensure that palliative care for Parkinson’s patients is personalized and tailored to their individual needs and preferences?
9. What role do families and caregivers play in end-of-life planning and decision-making for Parkinson’s patients?
10. Can you share any recent developments or advancements in Parkinson’s disease research that may impact future treatments or quality of life for patients?
