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Abstract and Introduction
Abstract
Parkinson's disease (PD) is a chronic, progressive neurological disease affecting 1.5 million Americans. The modern success of pharmacology and deep-brain stimulation surgery to treat the motor symptoms of tremor, rigidity, and bradykinesia provide PD patients with longer lives and increased motor functioning. However, in the moderate and advanced stages of disease, the therapeutic benefits of pharmacology diminish and motor symptoms are more complicated to treat. The nonmotor symptoms of PD receive little attention in clinical settings, although they can lead to disability and caregiver burden. The Center to Advance Palliative Care advocates applying the principles of palliative care to chronic disease. Likewise, the World Health Organization has redefined palliative care to include life-threatening illness. The Parkinson's Disease Model of Care (PDMC) takes the precepts of palliative care and presents a model for the neuroscience nurse to use in individual care planning across the trajectory of disease. The PDMC guides the nurse in providing relief from suffering for PD patients and their families, from diagnosis through bereavement, with an emphasis on advance care planning.
Introduction
Parkinson's disease (PD) is a common, chronic, progressive, neurodegenerative disease with an annual incidence of 25.6 cases per 100,000 individuals. Approximately 1.5 million Americans are currently diagnosed with PD, and 60,000 new cases are diagnosed each year. Prevalence in the United States and Canada is estimated to be 369 per 100,000 individuals, and prevalence increases with age (Rajput & Rajput, 2002; Siderowf, Cianci, & Rorke, 2001). There is no cure for PD and the cause of the disease continues to elude medical science (Siderowf, 2001).
Motor symptoms of resting tremor, rigidity, and bradykinesia characterize PD. As the disease progresses, balance and gait become more affected and disability increases. Nonmotor features of PD ( Table 1 ) can occur at any stage of disease and can contribute to significant disability. The neuropathology of PD is related to the depletion of dopamine-producing cells in the substantia nigra.
PD can be divided into three stages: early, moderate, and advanced. Each stage of PD demonstrates a progression of disability, with increasing complexity of care required to manage motor and nonmotor symptoms. Physicians who specialize in movement disorders report that no two cases of PD are alike. Thus, each case presents with a unique set of symptoms and disease trajectory. Often physicians will be guided by the historical course of disease to provide a future estimate of disease progression (Duda & Stern, 2005), leaving the patient and caregiver with a sense of uncertainty about future disability and dependence on others. Factors related to the rate of PD progression are presented in Table 2 .
PD is a chronic, progressive disease with limited therapeutic options in its advanced stages. The precepts of palliative care provide a framework to guide the treatment and care of patients with PD and their families. The World Health Organization (2005) defines palliative care as follows:
Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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.
The American Academy of Neurology Ethics and Humanities Subcommittee (1996) published a series of papers on palliative care and ethical considerations in patient management that states
Many neurologic diseases are progressive and incurable. The optimal care of such patients requires that neurologists understand and apply the principles of palliative medicine. Indeed, the principles of palliative care are relevant to the management of many patients because minimizing distress and controlling pain and other symptoms are important even for patients with curable disease (p. 870).
This article applies the principles of palliative care to PD treatment and provides neuroscience nurses with a model of care. This model guides nurses through the three stages of PD and incorporates the concept of palliation from diagnosis through bereavement. Significant works from geriatric nursing, palliative care, hospice care, gerontology, and medical neurology are cited.
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