A Beginner’s Guide to Palliative Care

As the Momma Bear of a young man who was born 10 ½ weeks early, we have seen a lot of medical professionals over the years.  In March of 2021, C-Bear had surgery number 20 and 21(I think – I honestly have lost track!) so we are not new to the hospital routine either.  But it took COVID-19 and the plethora of online trainings and webinars that suddenly became available, for me to find out about Palliative Care and to wonder why no one had mentioned it to me before.

For me, as for probably most people, I assumed palliative care was the same thing as hospice, something that was available to people in an end-of-life situation, to help make their last days as comfortable as possible in the setting of their choosing.  I quickly learned that I could not have been further from the truth!

What is Palliative Care?

• www.getpalliativecare.org states, “Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.” 
• Palliative care is an extra layer of support for individuals and their families
• Patients can receive care at any point during serious illness – not just at the end of life.
• It’s is not just physical care. It also includes emotional and spiritual support, among other services.

In a nutshell, a palliative care team can walk along the individual and family to help to make sure they have all the information, tools, services, and resources they need. Being able to just focus on overcoming their medical challenges, will help with stress and overwhelm.

Why is Palliative Care important?

The World Health Organization (WHO) has been pushing since 2014 to get countries world-wide, to implement and/or improve their palliative care.  According to their website:

• “Palliative care is explicitly recognized under the human right to health. It should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individuals.”
• Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.
• Each year, an estimated 40 million people are in need of palliative care; 78% of the people live in low- and middle-income countries. 
• Worldwide, only about 14% of people who need palliative care currently receive it.

For example, if the person with the medical challenges has job but isn’t going to be able to work until they are back on their feet, the care team can work on connecting the family to safety net services, such as Supplemental Nutrition Assistance Program (SNAP) and Temporary Assistance to Needy Families (TANF), provide a list of local food banks, reach out on their behalf to other non-profit agencies that might be able to provide assistance for rent/mortgage, activity packs for kids in the family, respite services, etc., as well as assist with care coordination between all the doctors and specialists involved in the patient’s care. They are really there to relieve some of the stress and burden the individual and/or family may be facing.

Is palliative care right for you?

Think about these questions to help you decide if palliative care might be right for you:

• Have you or your loved one been diagnosed with a serious or chronic illness?
• Does this illness require pain management or ongoing care?
• Is your physical pain under control?
• Do you or your loved one have a difficult time emotionally coping with this illness?
• Do you understand your treatment plan? Is more information needed, explained to you in a way you can better comprehend?
• Have you put advanced care planning in place so someone will know your wishes?

Palliative care is for anyone of any age and at any stage in an illness, whether that illness is curable, chronic, or life-threatening. If you or a loved one would like to be connected to a care team, be sure to ask your doctor for a referral.

Benefits to the patient

• Reduces hospitalizations
• If hospitalized, it can result in a shorter hospital stay
• Helps coordinate care between health care professionals
• Provides information on advance directives and planning
• Works with your physician
• Provides pain relief
• Helps control your symptoms

They can receive care where they live currently, whether it’s at home, a hospital, an assisted living, or a skilled nursing facility.

Frequently Asked Questions

Final thoughts

I know that when I was in the hospital with my son, it was nice to have the team come in and check on us. They made sure I understood what my son’s prognosis was, what his care plan was and more importantly, to be there in case I had questions or even just needed to vent. They would check on my stress level, make sure I was eating and sleeping, and if I needed a quiet place to hang my head and cry, they had a private office I could access at any time.

When it comes to anything medically related, including palliative care, educating yourself is key. Accessing care team needs to seen as a positive thing for you and/or your loved one. You are taking this step of adding to your care team in a way that will free up valuable time for you to enjoy life and to concentrate on healing.

Using palliative care is very much a personal decision, but I hope that the information I have provided above helped to clear some of the confusion about this wonderful service, and that you take advantage of it. I know for my family, it was very beneficial!

Please comment below if you have ever accessed a Palliative Care Team. I would love to hear your experiences!

Other posts you might enjoy:
Momma Bear’s Guide: Help wanted ads for caregivers
Momma Bear’s Guide: Interviewing caregivers
45 Unexpected truths of Momma Bears of children with a disability
Emotional Support Animals Demystified