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.
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