Attitude Counts When It Comes To Palliative Care
- Written by A. Christopher Hammon, D.Min.
One of the things that I have been learning over my journey of the past couple of years is that a positive attitude really does count when when it comes to learning to live with a serious illness. With the reknowned yellow LiveStrong armbands and his own example in the face of caner, Lance Armstrong has helped motivate a lot of people toward living strong in the face of serious illnesses. Ira Byock, the Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in New Hampshire makes a point of noting through a wide range of stories in The Best Possible Care how those working in palliative care see it as affirming all of life. He also notes that the deepest secret to his therapeutic success is that he imagines his patients as well (p. 178). It takes attitude to imagine wellness and live as well as one might.
As a narrative researcher, I tend to pay attention to the stories I see and hear. As I have listened to stories of people who have lived well and sometimes longer than expected with various cancer diagnoses, a common narrative emerges: they tend to be people who successfully sustain a positive attitude and continue to pursue the things they are passionate about in life. They are the ones who seek to thrive by adapting in whatever ways necessary to continue to pursue their lives and passions for however long remains. They are the ones that draw in energy from their family, friends, and work to get up each morning and embrace the day ahead. When you know they are numbered, you don't want to let one get away.
Yes, my nature is to have a positive attitude and so I am inclined to hear this narrative. I am the person that registered for a 400 mile, week-long bicycle tour for eight months post-op the day before going into my first round of surgery and chemotherapy. I had been told that my job was first to survive the ten-hour procedure and then to recover from it over the next year. The goal of a bike tour I could look forward to seemed like good motivation. I rode those miles and had such a great time on that tour that I did it again the next year.
It was work to get there, though. And it took an attitude of self-confidence that I could do it, to be able to do it. The same attitude it took to get through the surgery and recovery in the hospital. I have often told the story of riding 400 miles that week and choosing to go off route over one of the big hills in the area to celebrate the day that I was eight months post-op. The part that I rarely tell is about the 1600 miles and the rehab hills that I struggled up and partially walked to get to the point of being back in adequate shape to do a 400 week.
Out of that experience I learned that it takes a lot more than just good medical care to manage serious illness. It takes more than managing pain. It takes managing energy, attitude, and hope. It takes activating a lot of heart, soul, and spirit to sustain the sense of hope and the positive attitude associated with the quest for added years and quality of life.
In my research regarding my particular cancer, I keep coming across this recognition. I read the statistics from the research that have been compiled around various treatment approaches and outcome expectations. And then I see the reminder that is almost always present: every person responds differently and no one can predict what the outcome might actually be (so much for the numbers). There are some broad strokes related to tendencies, but not much more in terms of predictability. But then, as a researcher I’ve always looked for the patterns in the narratives anyway.
When it comes to the stories that I have encountered, there is a particular pattern that I have noticed. The people who seem to survive the longest seem to be the people who are active and have a positive attitude in adapting to living with a serious illness. They not only employ the best medicine that offers but they also bring in the other resources of heart, soul, and spirit. There are some changes to be made, of course, but they adapt to their new life and go on in pursuit of their best quality of life.
I do want to add a reality check here. Bringing a positive, holistic attitude to the table does not guarantee longevity. There are no guarantees (you never know when a bus might fall from the sky) and lots of people with positive attitudes do not extend their lives. What I hear the stories suggest is that people who activate those resources of heart, soul, and spirit tend to sustain their quality of life more as they would choose it for the time that they do live. Attitude, particularly a positive one, helps to extend life lived well.
Another area where I’ve seen attitude count is in taking charge of managing one’s illness. Being your own quarterback in developing an understanding of one’s condition and what is involved in managing it, enables you to take a lead role in choosing and mobilizing the various resources available; from surgeons to specialists to nutritionists to therapists to self. I remember a morning during my first hospitalization when the resident was making his rounds. I had some concerns about an odd feeling that I had in my middle, but the resident wasn’t interested in listening to anything I had to say. He had his instruments and was only interested in telling me his perception of what was going on. Finally in frustration I said, “Listen, my doctorate wants to talk to your doctorate. I need your smarts to listen to what I am feeling so that I can get your take on it and we can assess whether we need to do anything.” It turned out that there was an issue that we needed to address. The nurses and med techs loved my audacity, but it reflects how we need to speak up and speak out. It takes a bit of attitude to feel comfortable doing this. My grandmother used to call this gumption. She admired people that had gumption.
But this isn’t as much about being confrontational as it is having an attitude of taking responsibility for learning as much as you can about an illness and taking a positive attitude toward one’s own well-being. Is my cancer my fault? No, it just is. Is how I live with it and around it my responsibility? Yes. That is something I can affect in positive or negative ways.
With the experience of my first round of surgery and chemo behind me, when they told me that I was going to have to undergo it again last March, I knew I was going to need to pump up my attitude to generate the energy required to recover and continue to adapt. I am blessed to have a lot of people praying for me and sharing their energy with me. It makes a difference, especially on those days when pain is nagging and energy is lagging. Those are days that I gather in energy from others to power my positive attitude to adapting life and pushing the question of what I might do with this to make a difference in life for others. It is an attitude that I am finding makes a difference in my quality of life.
Byock, Ira. (2012). The best possible care: A physician's quest to transform care through the end of life. New York: Avery.
Dr. Chris Hammon, a cancer patient, is the Executive Director of the Wayne Oates Institute and Affiliate Faculty in Leadership for the Drew University Theological School's Global Online Doctor of Ministry Program.