Palliative Care : A Personal Experience

I am a heart failure patient who recently had my first palliative care consultation. I wanted to explain how I got the appointment and what it is for people who have considered it AND for those who might find it beneficial.

As background, I am a heart failure patient, but not end stage heart failure patient. What drove me to consider palliative care is that I have my wedding coming up, and we are concerned about my energy levels. How I will get through this multi-day event without being fatigued? Will I lose all joy?

Getting a palliative care appointment as a heart failure patient

To start, getting the appointment was not necessarily straightforward. Also, for my cardiac, I see a team of heart failure doctors - not cardiologists. I ended up with my heart failure NP and asked about palliative care.

She said it's a great idea, and she thinks all heart failure patients deserve to see a palliative care doctor; however, due to resource constraints, it is no something that is routinely offered. However, she was happy to put in the referral for me (I have an HMO insurance plan).

I ended up seeing a palliative care MD, not NP or nurse. Just FYI!

My first appointment

First, the appointment was 1 full hour. It was lovely to have the time to not feel rushed, and get to have a meaningful conversation. We went through my history, and she asked how I get joy and meaning from my life, my hobbies, what I know about my illness and what is important to me.

It was really interesting that she asked about how I get joy, because that is something I think of daily- even if it's something small like a bit of chocolate, good hug from my partner (we joke about oxytocin hugs,lol), etc.

Overall, I would recommend this to every heart failure patient. The most beneficial parts of the appointment were when we talked about my goals and struggles achieving those goals.

For instance, I explained how I LOVE to travel, and we brainstormed realistic options. She also made good points about starting small because I want SUCCESSFUL trip(s). So she suggested I think about how much activity can I manage, how long can I travel for, how am I with altitude, and more. Plus, we discussed that I should think about the pre-cardiac care planning would be required, especially if I go overseas. She also offered to ask her colleagues for ideas on place for me to visit with good heart care that might be a little off the beaten track.

Also, we talked about children, and I explained both my sadness and not being able to have any of my own and my struggles with finding mentorship programs. She had innovative ideas and offered to look into a few for me!

As far as the energy level is concerned, she said the typical stimulants are out of the question, but I had a few other ideas. She offered to explain the situation and check with my medical team FOR ME!

A successful experience with palliative care

The most beneficial aspect was that communication piece. I am not sure if others feel like this, but at times communication with my heart failure doctor can be challenging. Personally, having an advocate that will talk with him, doctor to doctor, and take my emotions out of it, is a huge win in my book.

So, for anyone who thinks that palliative care is only for end stage that is not true. I found it to be comforting, validating and helpful. I would recommend asking your medical team about it.