In this article, I’m going to talk about palliative vs. hospice care and how to know the difference. Unfortunately, there may come a time pre-transplant where you may hear one or both of these terms. I’ll help you understand the difference between the two and how one of them does not mean the end of the road for you.
The News is Not Good
“Your condition is getting worse. You need to talk to palliative and hospice care professionals and start making arrangements.” I’ll never forget hearing those words. When your doctors, the ones who hold the key to your survival, are telling you it’s time to make “arrangements,” it’s like a full-on punch in the gut. However, here I am, explaining what these terms mean so it does not necessarily mean your time is up.
My dear friend and former hospital roommate took one look at me when I heard this news and said, “I don’t see an expiration date on your forehead! You keep fighting!”
Still, the reality was, I was nearing my 90-day “expiration date” and wasn’t even officially listed yet so I needed to face the music. So we set out to make my “arrangements.”
What’s the Difference: Palliative vs. Hospice Care
Many think these words are synonymous with end of life care. While they are similar, there are some distinct differences that make a big difference.
Palliative Care
People with long-term health issues like liver disease or cancer are the perfect candidates for this care. Palliative care focuses on life-sustaining measures for the patient. Frequently, you can elect for palliative care through your hospital, but there are outside facilities as well. I used an outside palliative care provider because it was not yet fully operational at my hospital. Here’s a directory for palliative care providers if you need to search for one in your area.
It will not replace other treatments or tests you may be receiving on a regular basis. Palliative care is an addition to the other treatments you are already receiving. They can help with relief for nausea, medical equipment, and overall comfort. The goal with palliative care is to treat any symptoms you may be having and connect you with resources for additional help.
Palliative care encompasses more than just the physical aspect as well. A nurse visited me in my home on a regular basis. I also had a therapist available, a specialist for coordinating outside assistance and benefits, and a 24-hour nurse hotline. The goal of palliative care vs. hospice care is to help you to live as comfortably as possible until you receive your transplant or transition to hospice care.
This type of care will also include planning in the event you do transition to hospice care. They will discuss your advance directive (5 Wishes). This is a document that covers five specific things. The person you want to make your medical decisions on your behalf. The medical treatment you do and don’t want. How comfortable you want to be. How you want to be treated, and what you want your loved ones to know. I’ll go over this in detail in another post next week.
Hospice Care
This term is one that people recognize more frequently. Hospice care means you have come to the point where life-prolonging care is no longer the primary goal.
When a patient transitions from palliative care to hospice care, life-prolonging medications and treatment for the disease itself are discontinued.
In hospice care, the patient (or patient’s representative) will make decisions about what comfort measures they would like to receive. They will also help both the patient and their families with preparing for the end of life.
Hospice care can be in your home, a nursing home or similar facility, or sometimes a hospital. Many palliative care providers also provide hospice care. However, a directory for hospice care can be found by clicking here.
Like palliative care, hospice care will have nurses, therapists, and social workers available as well as clergy members. The difference here is two-fold. The primary goal is to help the patient be as comfortable as possible in their final days. Additionally, it is to assist the patient and family members with all of the grief that comes with dying.
Hospice care services also include assisting with any medical equipment needed in the home for the comfort of the patient.
Palliative vs. Hospice Care Are Similar But Different
Both of these terms can be terrifying when you are laying in your hospital bed. However, it’s important to not jump to conclusions.
Even though there are some similarities, they are very different. If you are unsure what your doctor may be talking about, ask them what they mean. This is not the time to guess, because one is distinctly different from the other. And let’s face it, when we’re ill we seldom think of the best possible scenario. Or is that only me?
It is also important to find out what that means from their point of view. Is your doctor saying that they will not be continuing to offer any life-prolonging care or are they saying your prognosis is bleak but survival is not out of the question?
You’ve Been Referred to Palliative Care, Now What?
Well, the long and short of it is, you keep fighting. You speak with your palliative care team. Discuss with them where you are struggling with your symptoms so that they can help treat them. Are you having trouble with insurance coverage? Tell them, they may have some inside scoop on how to get you what you need (mine did). If they have counseling available, take it. Unloading some of that emotional baggage will only help you face the next big thing you have to face.
For instance, my palliative team and I discussed the comfort measures I’d want if I transitioned to hospice care. One of the things I chose involved pain management that allowed for lucid conversations with my kids.
Nursing staff visited to train my mom on administering IV medication, reducing the time spent in the hospital.
I was able to call their nurse helpline (oh who am I kidding, I was not even close to being lucid enough to make that call) to determine whether a hospital visit was necessary. Once, they advised us to head to the hospital. The other, they offered my mom direction on how to manage the situation at home.
Palliative care is not a death sentence, so don’t treat it like one. Keep on fighting and doing what you are asked to do by your team. My friend was right, we do not have an expiration date tattooed on our foreheads. I made it through, and so can you!
