This is typically the first sentence I hear when offering our Neuropalliative Care service to patients.  In fact, physicians and nurses sometimes make the statement on behalf of their patients.  Despite talking about palliative care for people with Parkinson Disease (PwP) since 2005, I am faced with this statement on a weekly basis.  I want to be clear: “Palliative care is about living well, now!”

Palliative care indeed began as care for untreatable conditions, most often advanced or metastatic cancer.  Over time, the philosophy of palliative care has expanded to the following definition by the World Health Organization:

• Improves the quality of life of people and caregivers by addressing physical, psychological, social or spiritual suffering.

• Uses a team-based approach.

• Emphasized patient and family goals of care and quality of life.

• It neither seeks to hasten nor delay death and through its holistic approach, may prolong survival.

• Is applicable at any stage of illness including early stages.

Using this broader definition, neurologists have embraced palliative care for their patients.  Many PwP are disheartened to hear that PD does not have a cure.  But take a moment to consider, what illnesses are cured?  In fact, most health conditions are managed over time. 

For PwP, treatment has evolved significantly over the past 30 years of my practice.  In the beginning, neurologists focused on motor symptoms including wearing off and dyskinesias.  Over time, we added Deep Brain Stimulation and now intestinal duopa to treat patients with “advanced” symptoms.  Additionally, neurologists recognize that nonmotor symptoms are frequent, increase over time and impact quality of life. 

Therefore, the typical appointment for a PwP is complex, spans nearly their entire body and can involve multiple healthcare disciplines.  In our enthusiasm to include more health specialists in our patients’ care, we often neglect the impact of this broad team.  PwP and their caregivers often have multiple visits, programs, daily exercises, medication regimens, support groups and group activities each week.  It can be overwhelming. 

Rather than throwing everything including the kitchen sink at our patients, palliative care encourages us, as healthcare providers, and you, as a PwP or caregiver to think about your values, your goals and what is meaningful to you.  Our team members see patients together so that we have a plan going into the meeting regarding what to cover and through the meeting, we agree with what steps the PwP and family should take.  This way, the PwP leaves with a single list of actions, not multiple, sometimes competing lists. 

An important aspect of palliative care is spiritual distress.  I am not talking about religion, although, isolation from or alienation from your religious beliefs and customs can be a source of suffering.  When our group talks about spiritual distress, we are talking about losing faith that your life has meaning and purpose, feeling hopeless, and being uncertain how you can go forward.  These feelings can occur at any time from the diagnosis of PD onwards.  The spiritual psychologist in our program is an essential part of the team.  She often meets with PwP or more frequently, the caregiver separately.  We want you to regain hope and meaning in your life.   

Another member of our team is the Palliative Care physician.  This is a physician with extra training in palliative care and addressing symptoms.  My palliative care colleagues approach symptoms in a different way than I do, as a neurologist, and that is a good thing.  Each member of the team has a different perspective and potential solutions.  As a team, we develop a treatment plan for our patients. 

We are fortunate to have a dedicated nurse for our program who gathers additional information not typically covered in a neurology visit.  For instance, she asks about breathing, sense of wellbeing and asks caregivers how they are doing using a survey form.  She refers our patients for social work support, dietary services, swallow studies and an outpatient rehab program.  Patients know she is a resource for them if they run into problems. 

And yes, when the end of life is near, our program can identify this stage, provide supports in the home or a hospital admission.  I speak to palliative care physicians throughout my province to help them with management questions and to bridge the gap in terms of understanding PD and the multiple challenging symptoms. 

If you are fortunate enough to have a Neuropalliative care program that provides care for PD, ask about it.  At this point, few neurologists are certified in palliative care, but this is changing.  Neurologists can also team with palliative care physicians to provide care.  In some countries, geriatricians provide palliative care.  There is a newly formed International Neuropalliative Care Society demonstrating an international desire to provide palliative care for neurology patients.  All of us have a common goal:  to help you and your family live better, now. 

Janis M. Miyasaki, MD, MEd, FRCPC, Director, Parkinson and Movement Disorders Program and Co-Director, Neuropalliative Care. Dr. Miyasaki has spoken at past World Parkinson Congresses and will be speaking on Palliative Care and Parkinson’s in May at the WPC Virtual Congress.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®