Imagine you are in the hospital following surgery. You have 70 staples holding things together, and they hurt. Your nurse sees that you are in pain and offers to take out 5 of the staples. Then he says you get to choose which ones.
After he finishes, you still have 65 staples. But the pain you experience is greatly reduced. Why would that be?
This thought experiment is based on a story I heard from a close friend. After the 5 staples were taken out, she was able to fall asleep. The first three staples were easy to choose — they were the ones causing the most misery. For the other two, she wiggled around for several minutes before she made her choice. It was almost a feeling of luxury.
To me, this was a brilliant care-taking act. In so many ways, people lose control of their lives in hospitals. They depend on other people for even small things that they can usually do for themselves, and they cannot manage their own schedules. Even small acts that put people back in control of some aspects of their lives have a positive impact on well-being, in this case, by reducing the perception of pain.
When it is not possible to take away pain, it may still be possible to help people deal with it by asking them what they want and helping them see their choices, even within narrow bounds. In the words of Doctors Christian Feudtner and David Munson, leaders in palliative care for severely ill children, this means “empowering families to reflect broadly on the situation and to mold medical care to conform to their deepest values.”
Nurses as AdvocatesAccording to Heli Vaartio and colleagues in Finland, “advocacy can be described as an integral and inherent part of good nursing practice where nurses actively listen to their patients and analyze their interests and rights, seek to give them a voice and respond to them.” Their study analyzed the perceptions of both patients and nurses with respect to implementations of advocacy in pain management in a hospital in Finland.
They found that advocacy actions occur rather haphazardly, affected both by how well patients (or their family members) expressed their wishes and by how empowered the nurses felt. Highly motivated nurses were more likely to analyze patient’s pain care preferences, respond to their preferences, and counsel both patients and their care givers. Earlier experience with chronic pain increased the likelihood that nurses analyzed patient’s pain care preferences. Nurses who perceived that they had influence over pain care plans were more likely to analyze patients’ pain care preferences and counsel them about pain care.
Chronic Disease Outcome Analysis based on Self-Determination Theory
PPND authors have explored Self-Determination Theory (SDT) in the context of business and of education. SDT has also had an impact on medicine. Dr. John Zubailde from the University of Oklahoma Health Sciences Center and his colleagues used SDT in their work on defining outcome measures for treatment of chronic disease. Clinical goals generally involve restoration of health, prevention of complications, and preservation of health-related quality of life. For people with chronic diseases, restoration to health isn’t always possible. The authors state, “In fact, when faced with a chronic illness, learning and changing what we value and do can provide a powerful means to improve our quality of our life over time.”
The outcomes proposed by Zubailde and colleagues suggest what the originators of SDT, Richard Ryan and Edward Deci call “Contexts supportive of autonomy, competence, and relatedness.” In place of completely restored health, people with chronic diseases can grow in competence managing their conditions, develop social relationships that give their lives meaning, and take responsibility for adapting as their conditions change.
My friend exited the hospital with a renewed respect for nurses and the difference they make in the recovery process. When they perceived her need, they gave her ways to participate in her own care and make choices about her own pain management. Though we may think of autonomy as a matter of giving people big choices, it may be that even small ones can make a big difference.
Britton, K. (2008). Two blog postings contain a summary of Self-Determination Theory mentioned in this article: Motivation and Self-Determination Theory. Steps toward Intrinsic Motivation.
Deci, E. L., & Ryan, R. M. (1985). Intrinsic Motivation and Self-Determination in Human Behavior (Perspectives in Social Psychology). New York: Plenum Press.
Deci, E.L. & Ryan, R.M. eds. (2002). Handbook of self-determination research. Rochester: University of Rochester Press.
Feudtner, C. & Munson, D. (2009). The ethics of perinatal palliative care. In V. Ravitsky, A. Fiester, & A. L. Caplan (Eds.). The Penn Center Guide to Bioethics (pp. 509-518). New York: Springer Publishing.
Vaartio, H., Leino-Kilpi, H., Suominen, T. & Puukka, P. (2009). Nursing advocacy in procedural pain care. Nursing Ethics, 16 (3), 340-362.
Zubialde, J., Mold, J., & Eubank, D. (2009). Outcomes that matter in chronic illness: A taxonomy informed by self-determination and adult-learning theory. Families, Systems, & Health, 27(3), 193–200
Male nurse courtesy of euthman
Smiling nurse courtesy of euthman
Nurse giving a shot courtesy of Bruce Turner
Great example, Kathryn! I love how giving someone a small opportunity to make a choice can give such empowerment! I worked with Dr. Feudner during a MAPP project, and my team had come to the same conclusion – that it is through small steps, mainly ones giving hope, that we accomplish the most mileage for patients during tough times.
Thanks for providing such a concrete and memorable example!
Great article, well done. It made clear how important perceived control is for well-being (which was the topic of my MAPP research). Here you talk about healthcare, but it applies just as well in education, or parenting for example. I heard the other day that the best way to get kids to do something they don’t want to do (such as homework) is to give them a choice of two things they don’t want to do (homework or tidy their room)…
I’m interested to find out a bit more about the links between choice and self-determination theory – could you say a little more about that for us please? Is it simply that choice leads to improved control which leads to improved motivation and well-being?
Thanks for your excellent writing and for putting the spotlight on the medical experience and Self-Determination theory. I’m glad your friend had a positive outcome and is continuing to heal well.
As you said, for people with chronic diseases, “restoration to health isn’t always possible.” Chronic illness involves a village. In addition to reframing your life and values, with loss of health there needs to be a time for patience, kindness and understanding. It in invaluable to have an advocate, and nurses are beautiful people. All too often in the hospital setting and even in the medical doctor’s office, nurses (like doctors) are overworked. Advocates are powerful in the form of family/friends, the stakeholders. I was my dad’s advocate for over 10 years, as he suffered from grave health losses. It was a gift to have my dad, and a privilege to help him during his time of suffering. I wish I could have done more.. Now, I go with my mom to each doctor’s appointment. Since 1/14/10, she has been suffering from what is believed to be, “temporal arteritis.” We and our friends have researched this incurable, but (dangerously) manageable condition. We are the constant; we know about my mom’s care, more than the many doctors treating her. There is so much variation in the quality of medical professionals we have seen over these years. Now,it is a grueling, heartwrenching time, sorting out conflicting notions during 2nd and 3rd opinions…but there is hope and power in our “Group-Determination.” What do you think, K-? Kudos and thanks again for shining the light on making medical experiences more positive. My best, Elaine O’Brien, MAPP
MJ, sending like-minded, best wishes. xo
Senia, Congratulations to you and K. on your new PPND book, RESILIENCE. Can’t wait to read it! Thanks for leading the way and continuing to create forums for us to share, learn, flourish, and get nourishment applying PP in the world. xo
Yes, my friend’s story really stuck with me. That’s how I started the article — with the story, and then trying to make sense of it.
I remember hearing Dr. Feudtner speak several years ago. I found his examples very powerful of shifting focus from what can’t be changed to what people hope for in that context.
Thank you for your example. I remember doing that with myself back in college — I’d give myself the choice between cleaning the apartment and writing papers. Guess which got done? (OK, I eventually got around to writing my papers — but usually when something even more repellent, like studying for finals, came up.)
With respect to your question, I see choice as the main ingredient of autonomy, one of the three basic human needs referenced by Self-Determination Theory. You can’t have autonomy without the ability to make choices about your situation, and to feel deprived of choice is the same as feeling deprived of autonomy. Make sense?
It is really important to have an advocate in medical situations. I once led a group of diabetics working on a consensus statement about what we wanted our doctors to know. It was later published in Insulin. One of the elements read:
5. When we have just received bad or disappointing news from our health care provider, many of us are too busy dealing with the shock to listen to your suggestions for treatment changes. When we calm down, we are unlikely to remember what you want us to do. We need help remembering what you suggested during our meeting. We may need to be encouraged to bring family/friends with us and, if nobody accompanies us, then given written instructions.
So you — and I — have done that for our parents, who may not even be able to hear what the doctors are saying but are too embarrassed to admit it. And I’ve seen nurses be advocates in the same way — remind doctors to look at the patient directly and to speak slowly and clearly.
My friend did come out of the hospital thinking that it was the nurses who made the difference.
Good luck with helping your mother manage her condition. It makes me appreciate the exquisite balances in the body when one or more of them no longer operates correctly.