Palliative Care at 30-Something. What Does it Mean?

Palliative Care Integration Model cancerinmythirties.wordpress.com breast cancer thirties 30s 30's death dying hospice

Palliative Care Integration Model
Image Credit: University of Alabama School of Medicine

If you’re like me (until fairly recently, anyway), when you hear the words “Palliative Care,” you think HOSPICE.

Hospice is a scary word in the cancer world.  At least that’s been my experience.  In Cancerland, nothing comes after hospice.  That’s it.  Game over.

So when you are a 30-something-year-old and you hear your oncologist tell you that she wants you to see a Palliative Care specialist, your heart might skip a beat.  I know mine did.

For me, I think it is because I was there as my grandparents went through cancer and treatments and eventually ended up on their deathbeds.  I was there when hospice began for them.  And the fact that the start of hospice coincided with the start of their palliative care was not lost on me.  So it’s only natural for me to associate one with the other, right?

Things were different years ago.  My grandmother suffered with her shiny bald head marked with surgery scars and radiation tattoos and burns from the treatment for her brain cancer.  She suffered with no relief until her poor shiny, wounded head lost its luster.  She suffered until hospice started.

The hospice folks came into her home, set up a hospital bed in the dining room, and they began her palliative care, finally, with some heavy duty drugs.  But she suffered until that point.  And even afterward because the pain control wasn’t great.  It was almost a relief when she slipped into a coma and finally died because it was so painful to watch her suffer and to hear her moan in her sleep when we knew that all hope was lost.

My grandfather’s scenario was different.  I’ve blocked out the length of time he actually suffered with lung cancer.  I was there, so I should know.  But it is too difficult to remember how long the cancer actually took to kill him.

What was different about his experience?  When he was ready for hospice, they didn’t come to us.  We moved him to a hospice.  This was where his palliative care began.

But it only lasted for a day.  We moved him to the lovely hospice home, they started him on morphine and gave me special swabs to keep his cracked lips moist.  The volunteers were warm and comforting and did their best to keep my grandfather pain free.  He died that night.

So it’s likely that my ideas about palliative care and hospice are rooted in my experiences.  I learned that palliative care was end-of-life care. But this is not true.  At least not anymore. So what is it, exactly?

From the Cancer Center’s brochure:  

Palliative Care is medical care focused on relief of the pain, symptoms and stress of serious illness.  The goal is to help people live comfortably and to provide the best possible quality of life for patients.

Patients struggling with the uncertainty of serious illness need comprehensive care and support.  They need to know they aren’t alone.

What Can You Expect from Palliative Care?

  • Relief from distressing symptoms such as pain, shortness of breath, fatigue, loss of appetite, difficulty sleeping
  • Improved ability to carry on with your life
  • Improved ability to tolerate medical treatment
  • Better understanding of your medical condition and medical choices

***

Doesn’t sound so bad.  Sounds good, actually.  So I’m far less apprehensive (and maybe a little excited?) about my appointment at 8:30 this morning.  And I feel pretty lucky to be going to the Cancer Center at the best hospital in our area to meet with a specialist on their team.  Of course I’d feel luckier to not be 30-something and in need of their services, but I’ll take what I can get at this point.

I will let you know how it goes…  Though Percocet (Oxycodone) has been a faithful friend for a long while now, I’m hoping there might be something that works a little/lot better — and that’s less liver toxic — in my future.

We shall see…  Good night…

Advertisements

17 thoughts on “Palliative Care at 30-Something. What Does it Mean?

  1. Your post was very helpful. It’s clear I didn’t understand palliative care–my grandfather had it and they came to his home and set up a bed, did all the things you mentioned. Thank you for explaining how it’s more than just that.

    Like

  2. I believe you’ll be fine. I’m 38 and I have breast cancer, stage 3, triple positif. I’ve taken some treatments, and now I’m fine. So I hope you’ll be fine too. Please believe it.

    Like

  3. Your recollections of palliative care resonate with what I found out about my Mom’s care. Unfortunately I didn’t know this term meant aged 24 so I called MacMillan (who provided the palliative care nurses) and was told in a very matter-of-fact way that it meant my Mom’s life was going to end imminently. I was beside myself. No-one told me I was going to lose my Mom, I was led to believe she’d be OK after chemo, at least for a while. As it happened Mom was 46 and never got to ‘after chemo’ but that’s another story.

    I’m so very grateful to you for posting this information. Like you I find it hard to hear the words palliative care because I associate them with something untimely and cruel. I wish so much that you weren’t hearing these words now but at least we both know they don’t mean exactly what we thought based on our previous run-ins with this foul disease. Thinking of you and sending much love, Tracy xoxox

    Like

    • Dear Tracy, thank you for your comment. I am so very sorry for what happened to your mom — what a traumatic way to lose someone so special to you — and especially at her age… And I am sorry for the kind of experience she/you had with palliative care. What painful memories…
      I am glad you appreciate the post — I know it was enlightening for me. I also know you can understand what it is like to hear those words — and I am also glad it no longer means exactly what we experienced it to mean when we were younger.
      Thinking of you, too, and so grateful we met in this forum… Love & hugs to you…

      Like

  4. My Mom had palliative care/pain management treatment for the arthritis in her spine. Some of it was pharmaceutical, and some was other things like heat or cold, exercises, topical treatments, and various devices to make sitting for long periods more comfortable. I hope you will be more comfortable and they’ll find a good path for you!

    Like

    • Thank you, TRS. I’m glad it helped to make your Mom more comfortable. I will be posting about my experience so far — all pharmaceutical interventions. I am hopeful that it will helpful, too. Thank you for your comment & support!

      Like

  5. Pingback: Palliative Care at 30-Something : What Does it Mean? (Part II) | cancerinmythirties

  6. We had a talk on Twitter at #BCSM and they were saying that these days there should be “palliative care” with all stages of breast cancer and that it isn’t only a conversation about hospice. The definition is changing and I wish I had some type of plan when I started, but I know if I heard the word “palliative care” I would have freaked out. They need a new word for it!

    Like

  7. Pingback: Why I Can’t Wait for My Colonoscopy | cancerinmythirties

  8. I’ve often said that the word Hospice as gotten such a bad rap. People always think it means the end is near. In reality, it;s about comfort and life quality. Excellent Post – on to part 2

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s