“Medicine is not about conquering diseases and death but about the alleviation of suffering, minimizing harm, smoothing the painful journey of man to the grave.” – Petr Skrabanek
While we cannot overcome terminal illnesses, we can minimize the pain that is felt and ensure our patients and their families receive necessary care.
For affected families and patients diagnosed with Parkinson’s Disease (PD), a progressive terminal illness that affects more than 10 million people worldwide, there is rarely a chance to minimize this pain during the course of the disease. From the moment of diagnosis to end of life (EoL), those affected with neurodegenerative disorders experience a mixture of emotions including anger, frustration and fear, and the knowledge of a limited amount of time left with family.
But what if there is a way to alleviate these symptoms? What if there is a way to improve patient’s quality of life (QoL) and to provide the opportunities for families to spend more quality time with their loved ones?
You may assume that palliative care (PC) is synonymous with EoL or hospice care (HC). You may assume that the patient has “given up.” Our goal is to eliminate this common misconception and convince you that PC is more than just a passive form of care; it is active care that relieves the suffering of those who are at EoL.
The World Health Organization defines PC as “an approach that improves the quality of life of patients … and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”
Breaking down this lengthy definition, the goals of PC are clear: to improve the QoL of patients and their caregivers by preventing and relieving symptoms of discomfort, which differs from HC or EoL treatment withdrawal. PC can be combined with disease-modifying therapy to help with symptom management. PC is usually placed on hold when disease-modifying therapy can control the illness, making PC a secondary reinforcer when there is partial or no response to the therapy. When there is evidence of a plateau in disease trajectory and the symptoms are controlled, PC can be placed on hold once again. This cycle will continue until the final stages of life are reached and PC takes the lead to control the symptoms.
The importance of integrating PC early in disease trajectory is essential because as physicians, we strive to eliminate negative aspects in our patients’ experiences and provide the most optimal care. The earlier PC is integrated, the longer patients live comfortably and the more money and resources are preserved by health-care facilities – a win-win for everyone.
Now that we have discussed both PD and PC, how can we efficiently link them together?
PD is associated with both motor and non-motor symptoms that impact patients’ daily activities and lead to frustration and negative emotions, affecting their QoL. PC is undertaken by multidisciplinary teams who provide physical, psychological and spiritual support while preserving patient autonomy and dignity through the illness trajectory.
Although there are several models of PC delivery, they all share a common goal: to prevent repeated hospital readmission, minimize the rate of depression and improve the QoL of patients and their caregivers. This will help to alleviate caregiver distress associated with the suffering of their loved ones and being preoccupied with other thoughts such as the cost of care, the prognosis, watching their loved ones approach EoL, and the uncertainty of what to expect.
PC provides support to both patients and their caregivers to ensure that patient needs are met. These interventions build skills that include problem solving, goal-setting and cognitive restructuring.
But before we can provide these sorts of skills to patients and their caregivers, we must educate health-care professionals, including medical students, primary care providers and specialists, on what PC can and cannot do for patients with neurodegenerative diseases such as PD.
Only then can we move to the next step, educating the public, patients and their caregivers about the benefits of PC and improve the QoL of those affected. This will ultimately result in increased satisfaction with care and a willingness to accept PC at later stages of the illness.