What motivated you to become the pain advocate you are today?
“When I moved to Alaska in 1990 to work at a remote Alaska Native hospital with a service area the size of Ohio, after working in a large hospital system in the Midwest, the contrast was extreme. The Alaska Native people are experienced with pain—a physically demanding lifestyle in an exceedingly harsh environment with very limited access to health care services causes many types of pain—from trauma, loss, fishing, hunting and now chronic diseases like cancer. In fact, we found that the Wong-Baker Faces scale, confused elders – ‘he never looks like that’ – so we developed a pain scale with more stoic expressions, e.g., one tear for the most severe pain.
Now working at the Alaska Tribal Health Consortium in Anchorage with the cancer program and the Oncology clinic at the Alaska Native Medical Center, I am aware of cancer pain and all its manifestations. Like Dr. Greg Marino, Director of the Oncology Clinic, says, ‘Pain is a many-spoked wheel – if we know what is going on with a patient’s mind, body and spirit, we can take better care of pain.’
In many ways, ANMC is ahead of other hospitals in spite of providing tertiary care throughout the Alaska Tribal Health System and consultation with remote providers. The health care team recognizes the importance of including family, and incorporating traditional ways into care and pain management. Many of the nursing staff are trained in Healing Touch and doctors will often issue an order for it. That’s the best kind of pain care—clinical, traditional ways and complementary medicine.
Finally, the pain of my husband’s 4.5-year journey with incurable cancer. Even though he had access to pain medicine, his oncologist did not discuss a comprehensive approach to managing pain. A ‘John Wayne’ tough guy, my husband began to ask for Healing Touch—he said it lightened the pain and helped him relax. I was so glad I could offer it to him.
But most of all, the unforgiveable pain of his last two days of life when he went 36 hours without systematic pain and symptom management—even though he was hospitalized in a hospice care unit in a large hospital. The bureaucracy disconnected types of care and even with my contacts and knowledge I couldn’t stop the fragmentation. Three phrases my husband said during this time will haunt me forever, ‘Please put a pillow over my head! I’m so hungry! Why am I still alive!’”
What inspires you to advocate for better pain care?
“My inspirations to advocate for better pain care:
- Many stories from my work with the Alaska Native people exemplify the need for coordinated pain control. We must be more aware of how spiritual and emotional pain relates to physical pain. There are many ways to provide pain control. We must demand that patients have access to pain control that allows them to function as alertly as possible and honors their spiritual beliefs—clinical, traditional and complementary medicine.
- No one should go through what my husband did. We cannot allow bureaucracy and fragmentation to stifle the best patient care.”
What resources have you found most helpful in your search to be an effective pain advocate?
“Most helpful resources:
- Watching compassionate and expert providers really work to understand a patient’s pain—all aspects of it—and take the time to work out a workable plan.
- Networking with other advocates is inspiring and provides ideas and connections. Reading about successful efforts is encouraging.
- Experiencing personal tragedies with ineffective pain care, knowing that I am not the only one, but knowing I have the knowledge to advocate for change.”
What is the best advice anyone has given you about working to improve pain management and access to quality pain care?
“Dr. Ira Byock—pain can be managed even in the most difficult cases. It takes a great deal of effort, but people are worth the effort.”
If you could change 3 things so that people with pain receive needed care, what would they be?
“Three things would be:
- Access to comprehensive pain care is not dependent on race, gender, education, economics and all other types of discrimination.
- Clinical, traditional and complementary medicine is taken into consideration when developing a pain plan.
- Comprehensive pain control includes physical, emotional and spiritual components.”
If you could write an inspirational message about the importance of appropriate pain care that the whole world would read, what would that be?
“Start with what you have….not complain about what you don’t have.”
What was your proudest moment as a pain advocate?
“When the time and effort it took colleagues and me to develop a Faces pain scale that was appropriate for the Alaska Native population and when it was validated in Nunavut (Canada). Like Alaska Native Eskimos and Inupiaq, Canadian Inuit and Eskimos live a harsh tragedy-ridden life and become more stoic as they become elders. This finding helps to encourage providers to be aware of the impact this lifestyle has on pain presentation and not assume that quietness means no pain.”
What is your greatest challenge on the horizon?
“Finding the best way to channel my knowledge, personal experience and energy to bring change to the current dysfunctional system of pain management.”
What advice would you like to give to pain advocates just beginning their journey?
“Success does not come easily. Be prepared for a long, hard journey….but it is worth it.”
What is your motto in your pain advocacy efforts?
“No one should die in pain.”
“I have a dream……my next life chapter will be directed to incorporating clinical, traditional and complementary pain care into best practices with the knowledge that the further from a medical center one lives in the world, the more we need to incorporate traditional and complementary medicine.”