Understanding Palliative Care

Contributed by Jane Marks, AARP West Virginia State President.

In the past months, many front-line workers have received well deserved accolades and other expressions of appreciation for their brave and tireless efforts.  This month, National Family Caregiver Awareness Month, I would like us to stand and applaud family caregivers for their brave and tireless efforts! 53 million Americans are currently caring for a family member.  It is important to note, since this is the month that also honors our Veterans, it is estimated that many millennials, (those age 22 to 39) who are caring for a disabled veteran.  This age group is not typically who we think of as caregivers, yet, they are making extraordinary sacrifices while going to school or beginning a career.

One resource that is commonly missed or underutilized by family caregivers is palliative care.  In my role as a former family caregiver for my mother, an AARP Volunteer and now as State President I have been privileged to sit on the Governor’s Advisory Committee for Palliative Care. Our work began in 2019 and most recently, we are collaborating with the WV Department of Public Health to create educational information about Palliative Care.   Noting the importance of palliative care Governor Jim Justice, recently proclaimed November as Palliative Care Awareness Month in West Virginia.  Here are a few fast facts that may be helpful concerning palliative care. 

What is it? 

• First, it is NOT hospice care.  Palliative Care is not the same as end of life care.
  
• Palliative Care is an actual medical specialty for people with a serious illness.  Examples of such an illness may include but are not limited to: COPD (Chronic Obstructive Pulmonary Disease); CHF (Congestive Heart Failure); end stage Kidney Disease; end stage Liver Disease; Dementia; Cancer; Neuromuscular disease.
  
• Its focus is on relief from pain, symptoms and stress from a serious illness.
  
• It is provided by a team - which may include, doctors, advanced practice providers, nurses, social workers, counselors and other specialists to help the patient and the caregiver navigate the challenges of facing a serious and potentially life limiting illness.
  
• Palliative care is appropriate for someone of any age, and with any serious illness, can be provided at any stage of the illness and may include curative treatment.
  
• Palliative care may be provided in any setting – for example: the hospital, long-term care facility or at home.
  

The objectives of palliative care include:

• Assisting the patient and family caregivers in navigating a serious, life threatening illness.
  
• Improve quality of life and lessen symptom burden.
  
• Assist with quality measures and accessing resources.
  
• Assist with a transition to end of life care should that be warranted. 
  

My family and I benefited from a palliative care program for my mother who had Parkinson’s disease.  I personally understand the advantages. Check with your physician, the hospital and your insurance provider to see if there is a palliative care program in your area and if you or your loved one may be eligible. 

And most importantly, know you are not alone.  Visit aarp.org/caregiving for information and resources, as well as to find on-line support. OR call the AARP caregiving line, Monday-Friday, 7 a.m. to 11 p.m. ET at 1-877-333-5885.