Last week, I was honored to be invited to participate, as a patient, in a palliative care conference. Hosting Stage IV cancer in my body provided my ticket in.
Not long ago, I felt that palliative care was the personification of the grim reaper. I considered it to be the last conscious step on the way to death, where they focus more on your comfort than cure.
When I protested meeting a palliative care doctor, I was told, "Think of it as pain management."
But I'm not in pain, I thought. I didn't want my life to end, just this conversation.
Nonetheless, during a recent low point in my treatments, I agreed to meet with a palliative care doctor at Massachusetts General Hospital.
I told Dr. Eva Chittenden about my acupuncture and other "alternative" methods I used to help myself. I told her about my trip to Lourdes, France to pray, and the impact that had on me. Since I didn't really want to see her, I didn't care if she didn't buy into all this. I had nothing to lose. Also, I feared that she would suggest more drugs for nausea or depression, which I most definitely did not want.
However, she listened incredibly well and got my point that taking more drugs wouldn't be the answer for me. Surprisingly, she was quite helpful and I hoped to see her again.
A couple of weeks later, she invited me to participate in the palliative care conference. I went from kicking and screaming about connecting with palliative care to being a featured speaker at this conference, a shift I found to be amusing.
But what I ultimately realized is that when doctors focus on what some might consider the "intangibles" of palliative care — asking questions compassionately, for instance — it can be truly healing.
Some of the doctors attending the conference practiced palliative care; others did not but
were interested in integrating the practice into their own specialty. They came from all over the U.S. (San Francisco, Denver, Nashville) and the world (Singapore, China). They broke into small groups to talk with patients; my group had about 12 doctors.
We sat in a circle and started with introductions. I provided some background
I am 49 years old and have been dealing with cancer in one way or another for the past six years. I was diagnosed with colorectal cancer four years ago, when my sons were 1 and 4. My husband is a radiologist but is very supportive of the alternative approaches that I use to keep myself healthy. Other than cancer, I can't remember ever being sick in my life. This cancer was discovered because I was extremely anemic: chronically exhausted, losing alot of hair, unable to take more than four steps without stopping to catch my breath. My primary care physician insisted on a colonoscopy, and there was the tumor.
Mine seemed to be a straightforward case - they removed the tumor with clear margins - but the doctors recommended surgery just to make sure that they got it all. During the surgery, they found one, small, flat lymph node. Because we knew many people who had more than one cancerous lymph node and were cured, it didn't get really scary until the cancer returned and was considered to be incurable by the doctors.
At this point, we opened the discussion for questions. I told the doctors that any topic was fair game, but I'd let them know if it became uncomfortable.
Here are some of their questions, and my answers:
What was your life like before cancer?
I loved my work as a management consultant, was married to a great guy, we had two young boys and were learning how to be parents. I felt lucky from day one to live in the fabulous community we do. Other than daily annoyances, I felt like life was under control.
How did cancer change your life?
It's hard to say because I feel like the boiling frog, getting used to this a little at a time. Cancer has given me the license to say no to anything I don't want to do. But we should all have that. We shouldn't need to have a serious illness to have
How do you cope on a day-to-day basis? When times get tough?
There are things that consistently see me through. Most people think it is the kids. I love my children, but at some point in this process, I had to believe that they will be alright if I die. If I do believe that, I can't also say that I need to live because they need me. I do want to be around to share life with them, for my own selfish reasons. But what does consistently pull me through is my faith in God - that each of us is here for a purpose, and if I am here, there must be a reason. Other things pull me though: Being able to laugh every day. Learning something new. Being surprised by something pleasant that I didn't expect. Seeing humanity everywhere I look.
What do you rely on for support?
In addition to the tangible presence of God in my life, I feel incredibly grateful for a huge, supportive community. Not only have they provided help where I didn't know we (meaning, me and my family) needed it, but their prayers and presence make a tangible difference in my life.
Do you believe that miracles happen to all of us, every day?
I do. I truly do. It is hard to slow down and notice them. A miracle can be simple, like a parking space where you need it. Or more soul-satisfying, like a friend who calls at the perfect time. It can be hearing beautiful gospel music that carries you as you walk down the street. You can stand in a crowded Manhattan subway station during rush hour, cursing your commute, and then notice the blind man in a suit standing in the same crowd. The miracle is realizing that your morning effort pales in comparison to what he did to get to the exact same spot.
Do you live differently?
Not as much as I would like. I live more slowly, so choose my activities more carefully. If I am lucky, I make decisions according to what I value. Sometimes I am good about it. But often I fail. For example, at a recent fair, I was staffing the bake sale table while my five-year-old was running the obstacle course. He kept asking me to watch him compete. In truth, I could have gone. The bake sale was fully staffed and they didn't really need me. But I held to my obligation and told him that I would come later. Of course, later, he was done. He was angry that I didn't watch him. And I was sad that I missed it.
Describe some good experiences you've had with doctors.
When I was trying to decide whether to take a break from chemo for awhile, one doctor told me, "As I see it, there are three paths. One is: You are cured. If so, there is no need to do more chemo." I fell immediately fell in love. The fact that he was willing to discuss "cured," that he would even entertain it as a possibly, opened me up to listening to everything else he had to say.
Describe some experiences and interactions you've had with doctors that you'd rather not repeat.
During one chemo session, I had a doctor say to me, "When this chemo stops working...." NOT what I needed to hear right then. The chemo was working, there was no sign that it was going to stop, and if that happened, we could discuss it at that time. Bringing it up prematurely totally stomped on my happy place.
Some questions were more difficult:
What is the impact on your children? On how you parent?
I considered this. What are normal childhood questions about death, and what is specific to our family situation and an underlying fear a child might have?
As my husband and I parent, we oscillate between attitudes like, "Life is short. We are having fun and it wouldn't really hurt for them to go to bed a bit later," and "They need a sense of security provided by structure and a regular bedtime."
I've been whisked to the ER in the middle of the night, so they go to sleep and wake up to a missing mom. Sometimes, they leave for school and I end up in the ER during the day. They come home to a different household, not knowing when I will come home and whether it will be the same again. They have had to deal with more uncertainty than their peers.
[module align="right" width="full" type="pull-quote"]I do sometimes look into their eyes like I am drinking them in, and I try to pour my whole being into their bodies through their eyes, so that I am always with them.[/module]
I do sometimes look into their eyes like I am drinking them in, and I try to pour my whole being into their bodies through their eyes, so that I am always with them.
What do you tell your children about your cancer?
Well, my body looks different from a normal body, so they see that. I had a mastectomy (without reconstruction) and I have a colostomy bag. I've had several large surgeries, so they've seen those recoveries and the scars. They know that all this is to get rid of bad cells in my body.
Cancer is not an unfamiliar word in our house. We explain that cancer means that there are bad cells in a body. We try to explain that some people die from cancer, some people live, and that I am taking some pretty strong medicine, chemotherapy, to help get rid of the cancer cells.
What do you want to leave behind for your children?
I struggled with this for a long time. I'm not good at making photo albums or scrapbooks. I didn't want to write a "goodbye" letter to them - it felt too sad, and how do you fit it all in? I couldn't do videos, either. I appreciate keeping the sound of someone's voice, but I know I would cry through the whole thing.
I finally decided to keep three journals. I like to write, so this was easy to do when I could keep up with it. One was for each boy, where I write a letter specifically to that boy about that day or month or whatever comes to mind - an accomplishment he's made, how he has grown, who his friends are, how he is as a friend, how he
learns....really, anything from the heart. The third journal is for my family. I started writing it to tell stories of our year, our vacations, what we do, funny stories that come up.
I also want to leave them the basis for a strong faith, since it helps me so much. That is difficult, because we all have to find our way there. My oldest doesn't believe in God because he prayed for me to be cured and that didn't happen, so he signed off.
I would like to give them a strong sense of community for them, that there is alot of support in the world. I still wrestle with the best way to do this.
What do you worry about?
This required some thought on my part, as I tend not to turn worries over and over in my brain. If I die when my children are young, I worry that my husband stays healthy and can step into the role of single parent. I worry about how other children will treat my children, and will my children be sad if I'm not here and they see their friends with their moms.
I worry about who will watch them at certain milestones, like doing their fourth grade poetry readings, with the same focus and open heart as a mother.
How do you imagine death?
Wow. I do believe there is something to be said for having a good death, and I hope I have that, hopefully in my 90's. I also know that we don't always have control over how we die.
I do believe in an afterlife, so maybe that helps. I can't picture it. The descriptions I read all sound very Christian, which is fine and beautiful, but I believe in a loving God so i have to believe that there is a place for anyone else who has lived a life to get them there. I'm Catholic, although I question some of what I am taught there. I feel like it is important for all of us to question and learn.
Our group discussion lasted for well over an hour. I enjoyed the intellectual stimulation and having an adult purpose to my day. I don't know if I am a typical patient or if I had something to contribute, but I do hope that they got something from our time together.
I certainly did: I gained significant insights about communication and how critically important it is. Because of how the doctors asked and framed their questions, I walked away energized. Here are four important things they did: 1. They set the context for their questions.
For example, the doctor who wanted to know more about the impact of cancer on my relationship with my husband started out this way: "With two young children, I have trouble continuing an intimate relationship with my spouse..." He could have simply said, "What is the impact on your sex?" but he laid some groundwork to connect with me, gave a context to his question, and used words that let me take it in a direction where I am comfortable.
2. They connected with me, played back what I said, and fed my ego a little:
"You obviously love and care about your children, and you are a great mom to them." It was REALLY important to acknowledge all this before asking a hard question about my kids. It made the question not feel so hard or so intrusive, and inspired me to be an even better parent moving forward.
3. They listened carefully to what I had to say and accepted it.
They made eye contact, they didn't interrupt, they left space when I finished speaking and didn't jump right in. They didn't offer advice or a solution. They didn't belittle what I said or in any way make me feel like I was living in another reality, but instead, made me feel like what I had to say was real to me, and could be to them. I never had an inkling of whether they agreed with me or not, but it didn't matter. I felt okay, and their personal beliefs were only that what I said, mattered.
4. They said "Thank you."
And I realized that with all the doctors and nurses I've seen, very few practice that style of communication. Heck, I personally don't practice that style of communication, and even get impatient when I feel like someone isn't getting to their point fast enough.
But now I want to change that. The steps sound textbook, but these doctors approached me in such a sincere way that I walked away feeling good about myself and about the profession in general.
It all felt very healing. And then I learned that patients who integrate palliative care with their treatments earlier on can actually live longer. All this "intangible" stuff has an enormous impact. And not just from doctors practicing it, but from all of us. Being heard by someone who cares provides strength, connection, and the inner fuel to continue. I would love to see more of that in the medical profession and in our daily lives.
This program aired on November 10, 2011. The audio for this program is not available.