Palliative vs Hospice Care?

pileofquestionsI’m still a little fuzzy on the distinction because what I heard (which might not have been exactly what I was told) differs a bit from what I’ve read. I find that there is generally conflicting information on the nuances between these two levels of care and each provider is a little different. However, we are going to move past that sweeping disclaimer and I will share with you how I view these two services and the role they have played in the care of my parent’s.

When my dad, who was in a moderate stage of Alzheimer’s, was diagnosed with a cancerous tumor on the back of his tongue, we pursued treatment options and realized, not only was he not up to the fight, but before we even got to treatment options he would have to be put under anesthesia just to clean his teeth. I saw how poorly he responded after being put under anesthesia to mend a broken hip and that news was the final straw. We called in hospice to make him as comfortable as possible. He was in his apartment with my mom for about a week after understanding his diagnosis. He was in a lot of pain and had fallen trying to get to the bathroom in the middle of the night so we had him transferred to the hospice facility. He passed after the first night in the hospice facility. The team worked to keep him comfortable. We were shocked to have him go from diagnosis of a tumor to death in exactly 4 weeks. For me, I’m glad he didn’t suffer any longer, but I still cry over my loss.

Mom was admitted into hospice care after she complained of back pain, was treated with Tramadol, and for the lack of any other way to describe it, behaved like an overdosed hippie. She could move but not manage to even stand or follow simple instructions. She tried to talk but she only spoke soundless words. I wasn’t really clear that she was in “hospice” until I called to have the doctor explain it to me. It took several weeks for her to interact with me and she required a wheelchair after being bed-ridden for so long. I still wasn’t sure what it meant until as my mom began to improve, I asked if physical therapy (PT) might help get her back on her feet and was told that PT isn’t something you do with a hospice patient.

In short, I believe hospice focuses on comfort when a terminal illness with a near-term end-of-life is expected, and no therapy would be provided to improve quality of life. Palliative is geared toward those who aren’t looking to extend a life, but want to be comfortable. Generally, most with varied forms of dementia are in palliative care since there is usually a longer life expectancy.

It’s all confusing and each bit of information seemed to foster another questions. It has served me well to meet with the medical and care team and explain our goals for my mom’s care. It never hurts to ask. You know your loved one best, so do what you feel is right. Satisfied. 

For deeper answers on this topic, please visit the following:

The Layperson’s Guide to Palliative Care

The Layperson’s Guide to Hospice Care

What Palliative and Hospice Care Mean Are Not the Same!

The Crushing Significance of Hospice

crushedI speak with the Hospice doctor and ask him what type of care of comfort they can provide my Dad. He explains how they can help him. We really have no idea what to expect. We know my Dad isn’t taking in much food or water now. He’s very uncomfortable and we want to help him.

Hospice provides palliative care for individuals with a terminal illness. They will help give my Dad relief from the symptoms – primarily pain – that plague him now. There is not a short window of time condition as I assumed when Hospice care was first suggested by the head nurse at my parent’s Assisted Living facility.

My Dad can stay in his apartment with my Mom as Hospice comes in to assist in his care.

My brother and I realize we made this call without really talking with our other brother and sister first. As my brother is flying from town to return home, I call my other brother and sister. Thankfully, I get their voice mail because I’m a sobbing mess on the phone as I tell them what’s transpired over the last 24 hours.

My sister calls me back before she listens to the message and I’m still crying. I tell her she will have to read my email summary — I’m unable to get out any more complete words. I write-up and send my siblings a summary of the last 2-days of medical appointments and invite all my sibling to call in to listen and ask questions when I meet with hospice tomorrow.

While I believe it’s the right choice, it’s really our only choice now and is not an easy one to make. Crushed.

** My apologies as I get my blog up to speed with the events that have happened in the last week and a half.