PALLIATIVE CARE ADDRESSING NON-MOTOR SYMPTOMS

The World Health Organization Defines Palliative Care As: “…an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

As hospice physicians, we most often see our patients with end-stage Parkinson’s disease challenged with both motor and non-motor symptoms that impact their quality of life and overall wellbeing. However, palliative care is not limited to those with end-stage disease. In this piece, however, we will address some of the more common non-motor symptoms. Although pharmacological treatment is beyond the scope of this article, hopefully being able to identify these will prove helpful and encourage seeking prompt medical attention from either primary care, specialist or a hospice /palliative physician as is applicable.

Pain

This can present in several ways:

1. Dystonia occurs when a muscle contracts for a protracted period- often described as a sensation of spasm, cramping or muscle twisting.
2. Pain in the muscles and bones from non-use or limited mobility- may be perceived as an ache.
3. Neuropathic pain (damage to nerves) - often feels like pricking, tingling or burning.

Excessive Sleeping

1. May occur with other disorders of sleep, e.g. restless leg syndrome and obstructive sleep apnea among others, which, if present, should be addressed.
2. If excessive sleeping is a sudden attack or if excessive sleepiness happens in the day (also known as Narcolepsy or “sleep attacks”), avoid driving.
3. Further, if lethargic, or excessive sleeping is a sudden attack and presents with cognitive impairment have your Physician check immediately for a urinary tract infection.
4. Non-pharmacologic interventions may include relaxation therapy (e.g., guided imagery, and deep breathing), sleep restriction, and behavioral therapy.

Neuropsychiatric Symptoms

1. Up to 40% of people with advanced Parkinson’s disease may experience symptoms such as visual hallucinations.
2. Some medications used to treat Parkinson’s may provoke psychosis. This causative factor needs to be ruled out or addressed before initiating other medications to address these symptoms.

Depression

1. By itself, depression can increase mortality and morbidity (the state of ill health)
2. Anxiety may also be present
3. Lifestyle changes, therapy as well as medications are effective interventions

Dementia

1) Up to 40% of people with Parkinson’s will develop dementia. Dementia may be a significant predictor for nursing home placement.

2) Some with dementia may go on to develop dysphagia (difficulty swallowing).  Studies have not shown any benefit from feeding tubes in reducing aspiration or improving quality of life. Techniques such as chin-tuck and thickened liquids (e.g., honey) are helpful.

Sialorrhea

1. Excessive saliva production also represented as the excessive amount of saliva in the mouth.
2. Often this leads to drooling. Hard candy or chewing gum may reduce drooling if mild.  More severe cases may benefit from prescribed medications.

Orthostatic (Postural) Hypotension

1. Defined as a sudden drop in Blood Pressure, which can occur after a change in position (e.g., standing quickly after sitting).
2. Symptoms may be fainting, weakness, dizziness, blurred vision, and confusion.
3. Abdominal binders, compression stockings, increased salt, and fluid intake, may be helpful.

The burden of these symptoms on those with Parkinson’s disease is significant. They can contribute to increasing functional dependence and the decreasing sense of identity and independent selfhood. They can also impact caregiver wellbeing. However, regardless of when they occur along the disease trajectory, these non-motor symptoms can be addressed, and palliation sought with the hope of increasing well-being and quality of life, even within the context of progressive chronic and terminal disease.

Your primary physician or neurologist is the best clinician to address your symptom management and overall plan of care, and with whom you should have the initial discussion about whether you or your loved one should consider evaluation for hospice, for end-of-life care. 

Find Family Hospice Care in the Wellness Village. Members since July 22, 2015. Family Hospice Care believes and promotes that each of us has the right to die comfortably in our home while receiving the necessary care to maintain dignity.