(This article appears in the April 2011 edition of Hospital News)
Sandy Sadler was alarmed, when her mother’s neurologist suggested that she might want to start looking into palliative care. “I always connected the term, palliative care, with end of life and I didn’t like that,” says Sadler. “I wondered, is the neurologist telling us that Mom is going to die soon?”
Two years later, Sadler’s 70-year-old mother, who has Parkinson’s disease, continues to live at home with her husband and attends a palliative care clinic at Toronto Western Hospital’s Movement Disorders Centre which operates the first clinic in the world dedicated to palliative care in Parkinson’s disease and related disorders.
In addition to Parkinson’s treatment, her mother gets medications that help her sleep better at night, that minimize confusion and hallucination, and alleviate excruciating pain from years of stooped posture. Sadler has a new appreciation of palliative care in Parkinson’s, seeing it as a matter of, “Let’s make this lady’s quality of life as good as we can for whatever time she has left and that could be for many more years.”
Dr. Janis Miyasaki, Associate Clinical Director and Deputy Physician-in-Chief at the Movement Disorders Centre at the Toronto Western Hospital says, “Palliative care is particularly important in Parkinson’s disease, because, as the illness progresses, patients are less able to use the dopamine-replacement medications, so they experience a serious decline in motor function.”
“As well, in the later stages of Parkinson’s, people begin to develop other complications that are part of the illness.” The complications may include cognitive decline, possibly dementia; mood disorders such as depression and anxiety; autonomic dysfunction such as a drop in blood pressure and swallowing problems; and sleep disturbance.
Pain can also be a significant problem. “Pain is often under-addressed in Parkinson’s patients and it has negative impacts on quality of life, reducing people’s ability to participate in physical activities and making it difficult for caregivers to provide proper care,” says Dr. Miyasaki.
“The main benefit of our clinic is that we stop thinking of improving movement at all costs and we look at the patient and the family as a whole.”
This means approaching patients while they are still cognitively able to make choices and informing them about what to expect, helping families plan living and caregiving arrangements, providing pain and symptom relief, and providing referrals to home or hospice palliative care physicians for the last six months of life to help patients and families prepare for the end and address symptoms that may occur when death is imminent.
The continuum of care is important, notes Dr. Miyasaki, “because the fear of abandonment, the fear of the unknown is very large for patients. We need to be able to reassure patients and families that service and assistance is available right up until the time of death.”
In view of the shortage of palliative care physicians across Canada, Dr. Miyasaki says, “Practically speaking, family physicians will need to provide more and more of the non-specialized palliative care and neurologists will need to develop the skills to provide specialized palliative care for their patients.”
What families can do
Dr. Miyasaki offers some suggestions:
Start planning long before the person is imminently dying. Is it time to change residence? Is formal caregiving help needed? Would a day program provide relief? Should adult children take a more active role in their parent’s care and decision-making?
Have the conversation. “Many times, patients want to discuss future care but family members don’t. However, patients welcome the opportunity to let family members know their preferences.”
Ask the doctor about palliative care while the person with Parkinson’s is still able to make decisions. “When people start noticing a continual decline in health or notice their relative becoming more frail or forgetful, then it’s time to ask about palliative care.”
Contact the palliative care specialist when death is imminent. “If the person is suddenly refusing food or seems to have difficulty breathing, call the palliative care specialist; he or she can help your loved one.”
Sandy Sadler adds, “Think of palliative care as comfort care. It’s a wonderful resource for enabling the person with Parkinson’s to have quality of life and it’s just as beneficial for the family.”