I began the journey into patient advocacy almost 6 years ago. I had been a very good nurse, a good leader, a great problem solver and had always had an entrepreneurial streak. I had been seriously ill for several years but my health had improved significantly, mostly due to extremely good self-care. But, going back to work as an RN doing 12 hour shifts on an incredibly highly paced unit and the constant yo-yo of my circadian rhythms from days to nights were no longer an option.
I had just left a very bad marriage and I literally had nothing to lose. I looked deep and hard at my strengths and weaknesses and when I found about patient advocacy in the US, I launched myself into this business. I was later to learn this is called “Post-traumatic Growth”. (Extra points if you watch the TED video by Jane McGonigal: https://www.ted.com/talks/jane_mcgonigal_the_game_that_can_give_you_10_extra_years_of_life).
What I have learned above all else is that I have succeeded because of three things:
- Self Care (and boundary setting)
- Remaining focused on what I do best: acute and serious illness and the natural progression of end-of-life. (Your professional strengths will differ, and that’s great.)
As many (not all) nurses are, I was naturally empathetic. But I needed to understand the difference between empathy and sympathy. I found this short, funny and incredibly informative video by Brene Brown, early in my search: https://vimeo.com/81492863. Brene has become my guru. If you have not seen her TED talks, please take the time and if you can, read her books (see below). She says:
- Empathy fuels connection.
- Sympathy drives disconnection.
This is one of my number one barometers when I meet and work with other healthcare providers and I have found that for the majority, the ability to express empathy is at an all time low. Patient’s understand that and we, as their navigators, use empathy so they feel instantly heard and many say, ‘relieved’.
As a critical care RN I had been focused on problem solving and solutions. While I had always thought I had listened to my patients, I had not had the time to see or listen to their stories… I had just captured brief sound-bites to keep them alive and get them home. As an advocate I had to learn to really listen because – above all else – that is what my clients needed. They were falling between the cracks in the healthcare system because no one was hearing their whole story. Over the years, it is the one piece of feedback that I continually receive: ‘You listened. You heard me.’ They are paying us to listen, so let’s take that time. Unless, it is a life or death crisis, we don’t have to solve their problem in an hour. In fact, my long-term clients want me in their lives for the sole reason that I listen.
Nursing scholar, Theresa Wiseman, describes the 4 qualities of empathy as:
1. Perspective taking and recognizing their perspective as truth.
2. Staying out of judgment.
3. Recognizing emotion in other people.
4. Communicating emotion with people.
Intuitively, when I first started defining my role as a patient advocate, I knew I needed to “soften” myself so I would hear and see my clients in a different way. I have watched the Cleveland Clinic video on Empathy a hundred times and every time, I soften and I cry. When you’re stuck and know you need a good cry, this is a good one to watch.
Empathy: The Human Connection to Patient Care shows that everyone has a story. Watch for body language… https://www.youtube.com/watch?v=cDDWvj_q-o8
(A quick note: occasionally you will see me use the word advocate for the ‘early’ days in this role. It was only a couple of years ago when I spoke with a couple of Ontario ‘advocates’ when we came up with the word ‘navigator’: a much nicer, more accurate and more Canadian term for our role.)
As an RN I had learned how to protect myself without ‘feeling’ much of my clients’ pain. I could clock out at the end of a shift and rarely thought of them again. Only later would I learn this was ‘Cognitive Empathy’. But, as a navigator, that level of empathy was not deep enough. We can’t have guards up and be effective listeners – people can see and feel that you are not authentic. I have learned to feel their pain and then let it go (to a large extent) and I learned self-care.
(Hint: immediately after an emotional appointment, play a few minutes of an emotionless game on your phone. Studies have shown that playing a game like Tetris derails emotions from becoming long-term emotional memories.)
I knew that feeling too much of my client’s pain hurt me and it did not help them. This is “Emotional Empathy”. You see it all the time when someone tells someone else a painful story and the listener winces in felt pain or immediately starts to tear up.
On ongoing practice of “Compassionate Empathy” is the middle ground and most effective form of empathy.
- “Cognitive empathy’ is safest, the connection is not as deep and can be seen and felt as superficial. This is most often used by clinical counsellors and therapists.
- “Emotional empathy” means that you literally ‘feel’ the other person’s pain.
- “Compassionate Empathy” is where you can understand what they are feeling and you are encouraging the person to take action to solve their problem
My team will tell you that I’m not the best at self-care. I work long hours and have a very heavy client load, all while growing this business. But, I know when I’ve reached the end of my rope and when there were one too many straws on my back. I retreat. I take time for myself. I nap. I read. I let go of everything for an evening, a night, and occasionally a whole weekend. Woo hoo! I put my concerns and to-do’s in a mental box and close the lid. (Wine and other alcohol can backfire if you are emotionally exhausted.)
Write down, right now, how you do self-care.
- What can you add to this list?
- What will be your cues that you have to practice self-care?
- What are the things the people you trust can watch for and lovingly let you know when you’ve pushed yourself too far, and, what can you ask they do for you when that happens (for example, a massive hug, letting you ugly-cry without judgement, run you a hot bath without being asked, turn down your bed and have a good book and a cup of tea waiting… okay, you caught me, that’s my list).
At first, I was all things to all people: there was not a client I didn’t accept, a problem I couldn’t handle, a time of day I wasn’t available. I’m not perfect at creating my boundaries but I’m better:
- I insist on being paid up front (after the initial consultation to see if there’s a fit) or the work doesn’t begin;
- Only the sickest of clients get to call me after business hours;
- I no longer meet potential clients any time, any place and try to stick within business hours for meetings;
- I rarely take on new clients in an emergency situation (because I can’t get their background information. When this happens I don’t have time to build trust, and I rarely get paid.
- I will no longer sit for hours in an emergency room unless it is, literally, a life or death situation.
- Finally, I will use extreme caution when taking on an angry client. (We will discuss good clients and difficult clients at length on Training Day). I had to learn, often several times the hard way, what my boundaries were. There are reasons why these clients have been denied health care: they rarely listen and change their negative behaviours and it is beyond our scope to help them make those changes.
But, no matter how well we set boundaries we can and likely will come down with a healthy dose of “Compassion Fatigue”. If caught early, it can be mitigated by letting go of a difficult client (or two), debriefing with the team (not your family), and taking needed time off with a heavy portion of self-care. If not caught early, it will derail you as a navigator and, possibly, take down your mental and physical health.
Here’s a snippet of a great video describing compassion fatigue and a good article that follows:
I have come close to quitting several times over the last five years and going to drive a taxi or work at Tim Horton’s… anything that didn’t involve connection and responsibility. Every time, it came about as a result of working with an angry, demanding client (or two) with personality disorders (mostly antisocial, narcissistic). These adults are really good at manipulating and taking you down with the rest of their healthcare team. You’ll get a lot of these people making inquiries, demanding your services: empathy is their life-blood and they feed on it… When you feel and hear red-flags, listen to yourself and refuse them as clients run the other way . Become “too busy” or their let them know their needs are, “outside your scope of practice.” As a mentally ill person in my life says, “Don’t give crazy an audience.” Then, call your team, get support. If necessary, call the police.
Much of the small print in our Agreement (to follow in Module 4) is to give you an ‘out’ with difficult, non-compliant, and angry clients. The more you are being pressured to take them on as clients, the more red-flags you are seeing, means the more thoroughly you need to go over the Agreement with them (out loud). Sometimes, with the most talented of these personalities, you don’t see the flags unless it is too late.
Finally, be very, very careful about giving clients personal information. Be careful about giving them ‘ammunition’ about your personal life (your fears, worries, information about family members). Don’t give them your address, don’t invite them to your home for a meeting, and never post personal information online. If you must have a mailing address, get a postal box or have them send it to our business address. Put our business address on your mail correspondence.
You will likely make friends out of clients. Just use extreme caution when you do so. If clients become friends, try and sever your business relationship and hand over navigation to your partner. And, always remember that trust is earned, slowly.