Palliative and end-of-life care in advanced Parkinson's disease and multiple sclerosis

Cognitive/psychiatric

• Cognitive changes are common in MS, with loss of verbal fluency, memory problems and difficulty with concentration.⁸

• PD dementia is common, characterised by illusions, visual hallucinations, visuospatial deficits, attentional and dysexecutive deficits.⁹ PD dementia can respond to acetylcholinesterase inhibitors.¹⁰ Hallucinations may respond to reduction in PD medication, particularly amantadine, monoamine oxidase type B inhibitors (MAOI-B), cholinergic medication and dopamine agonists.

• Depression is common in both illnesses. It may respond to selective serotonin reuptake inhibitors (SSRIs). In PD, optimisation of dopaminergic therapy and tricyclic antidepressants have also been shown to have benefit.¹¹ SSRIs should not be co-administered with MAOI-Bs because of the risk of serotonin syndrome.

Bulbar symptoms

• Hypophonia in PD and dysarthria in MS can make communication difficult and lead to immense frustration for patients and carers.¹²

• Swallowing problems are associated with aspiration. Early expert assessment by a speech and language therapist is essential. Aspiration may initially be silent without apparent systemic effects, but the situation can change within a few hours as the patient develops systemic signs of sepsis.

• Drooling of saliva is more common in PD. It can be managed by ultrasound guided salivary gland botulinum toxin injections, topical atropine 1% drops applied to the tongue or topical hyoscine patches.

Pain

Pain can be a disabling feature of PD2 and may have a variety of causes including central pain and dystonia.

• Neuropathic pain in the limbs or face is frequently difficult to treat in MS.¹³ Amitriptyline and anticonvulsant drugs like gabapentin are often employed. However, both groups of drugs are less well tolerated in MS and there are often unacceptable anticholinergic side effects from tricyclics and sedation and ataxia from anticonvulsants.

• Spasticity in MS can cause painful spasms and limb jerking, both of which can be particularly troublesome during the night. Antispasticity drugs have a variable degree of success and tend to cause sedation and ataxia. Limb contractures are a sign of advanced disease.

• Pressure ulcers, usually over bony prominences, can be related to loss of mobility and inadequate nutrition.

Decision making in the acute situation

For patients who lack capacity and are acutely unwell, there is a requirement to act in the patient's ‘best interests’ as prescribed by the Mental Capacity Act 2005 (Table 2).¹⁶ Optimum decision making in advanced PD and MS revolves around ‘trying to get it right’ for the individual patient. As far as possible, this should be what the patient wants or, if they have lost capacity, would have wanted. The patient's previous experience of hospital admissions may influence their preferences.

Withdrawing/withholding treatment and practical symptom management¹⁷

As the patient becomes increasingly bedbound, sensitive discussions need to take place with the patient and family about altering the focus of care.⁵ In both diseases, the aim of treatment shifts from maximising function to minimising suffering and aiming for the patient's comfort and dignity. Common goals are:

• freedom from pain

• relieving anxiety and agitation (particularly in PD)

• dealing with troublesome symptoms including:

  • drooling in PD

  • constipation

  • bladder spasms

  • insomnia.

One of the features of advanced PD is the inability to tolerate sufficient dopaminergic medication.¹⁸ In both PD and MS it is appropriate to minimise oral medication, particularly statins, antihypertensives and bulk-forming laxatives. Practical suggestions in managing complications for the acute physician are given in Table 3.