My Experience with Palliative Care

Many people confuse palliative care with hospice care, when in fact, they are very different. Palliative care is defined as specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.¹

Palliative care is different than hospice care

Palliative care is provided by a specially-trained team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.¹

The key words are that palliative care is provided in addition to any curative treatment you are currently participating in. Hospice care is end-of-life care.

Palliative care team members come to your home and review all your tests, treatments, side effects, daily care for yourself and adds an extra layer of support to your caregiver(s).

Your healthcare facility probably has a palliative care department as part of their Medical Care At Home team. Some of the more common professionals that participate in your care are:

• In-home Physician
• In-home Certified Nurse Practitioner
• Social Worker
• Pastoral Care

Their primary responsibilities are to help you with any side effects you may be experiencing from your treatment. From pain to depression to anxiety to nausea and vomiting; they cover it all. The palliative care team works very closely with your primary care physician as well as your oncologist/radiologist.

How palliative care helps me

My experience with palliative care began two years after being diagnosed with Lung Cancer.  My only regret is that I did not know about this resource sooner.  My nurse comes to my home every month and reviews what has happened in the past four weeks. She manages my pain as well as my general health and nutrition on a monthly basis.

Due to my pain since my lobectomy, a physician also visits me once every three months to work with me on pain management. Pastoral care calls me once a month to see if I would like a visit.

Help with insurance and disability

The most surprising was a visit from my social worker.  She reviewed my diagnosis, treatment, income, insurance, etc., and worked to have my state pay Medicare Part B premium.  Those of you on disability know this is huge! (Be prepared for it to take months since you would be dealing with your individual state.) So now, I have an extra $125.00 per month in my disability check that I did not know I was eligible for.

Palliative care is for anyone with a chronic illness.  It may not be for everyone but it is at least worth scheduling an intake appointment to see if you are eligible. And the best news is - most insurance companies will cover the expenses!

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.