First Interview with Yvette Colón
Yvette Colón, MSW, ACSW, BCD, is the Director of Education and Internet Services at the American Pain Foundation (APF), a nonprofit education, advocacy and support organization serving people affected by pain. She oversees the Consumer Pain Information Center where she implements consumer education program development and oversees all technology-based projects, including APF’s website (www.painfoundation.org) and PainAid: Online Support Community. She has provided bilingual clinical social work services in a variety of end-of-life settings, including hospice. She has published and lectured extensively on end-of-life social work practice, pain management, psychosocial oncology, diversity and technology-based social work services.
Q: What are some of the most pervasive myths around pain management that you encounter in your work with American Pain Foundation?
A: Our philosophy at APF is that “pain is real, not just in a person’s head.” People in pain often fear that they will not be believed; this is an issue that cannot be underestimated or overlooked when talking about pain management. While most professionals like to use the statement that “pain is what the patient says it is,” that is not often enough. The issue of pain is so subjective--patients may not be able to fully describe it, and there are no blood tests or other objective ways to quantify the pain. In addition, many health care providers may not be fully trained in how to assess it. So starting with the belief that pain is real is a critical first step in assessing and managing that pain.
Another major myth is in the language of “addiction”, “dependence”, and “tolerance.” These terms are so greatly misunderstood in the context of pain management, especially in the use of opioids; we still hear from both consumers and professionals expressing concerns about addiction. Unfortunately, the media also plays a role in continuing this confusion. An excellent document developed by the American Society of Addiction Medicine and two other organizations, called “Definitions Related to the Use of Opioids in the Treatment of Pain,” outlines the clear terminology and definitions with these terms.
Q: What myths are specific to pain at the end of life?
A: The issues discussed above are certainly seen in end-of-life situations as well. One of the biggest difficulties in end-of-life situations is that people may have no expectation of relief from pain; the common myth here is that pain is just an accepted part of the dying process. Part of this may be attributed to the fact that, as a society, we do not deal well in general with the issues surrounding dying, and so pain gets convoluted by other issues. And some people may feel that drawing attention to the pain may divert attention from any possible discussion of cure or other treatment. Hospice provides a wonderful model that can change expectations about pain management at the end of life.
Q: What cultural barriers exist that keep people from receiving good pain management?
A: Culture affects almost every aspect of a person’s access to pain control--how symptoms are expressed, how healthcare information is received, what kind of treatment should be given, for example. Social status, educational level and geographic location may also affect what sort of treatments may be available. Gender plays a role in accessing pain control--in general, men are traditionally less willing to admit struggles with pain. Age differences can also impact access--older people may be less likely to seek support, and their relationships with health care providers may not be as open. Religious beliefs may impact a person’s beliefs about pain, in terms of seeing a redemptive value in suffering.
Government and regulatory issues have also affected the current climate of pain management. Drug Enforcement Agency involvement in pain management has had a chilling effect on physician practice and prescribing.
Q: Yet it is clear that the knowledge and data exists to ensure good pain management to a vast majority of patients. What are some ways that you see for providers to bridge this gap between knowledge and practice?
A: The use of a multi-dimensional assessment is key in helping both providers and patients. Pain management is unfortunately not a typical part of medical school training. Nursing students may get a little more information; social workers get it when trained in hospice and palliative care. Yet tools and scales exist to help providers. Many people are familiar with a numerical scale--“rate your pain on a scale of 0 to 10, with 0 being no pain and 10 being the most excruciating pain ever.” However, assigning a number alone is not enough. Monitor the number every 24 hours--did it go up or down since yesterday? Follow it over time--at the last visit the number given was a 7, but that’s actually down from the previous visit when it was at 8.
Other scales are out there, too--scales with faces and color scales have been developed for use with children, or persons with limited language ability. A variety of pain scales and information is available here. And assessment must be an on-going process; it’s not a one-shot deal.
It is critical to assess not just pain levels but how the pain is affecting someone’s life. Can they get out of bed in the morning? Are they able to find satisfaction in hobbies, can they engage in meaningful relationships? The ability to cope with day-to-day activities, even for those with a terminal illness, can be eroded by pain. Assessment should also include information from the family and caregivers, as well as the support that they are able to give. The role of caregivers in terms of dealing with pain is underestimated and needs more attention. Unless a family is in hospice, support for caregivers is undervalued or ignored altogether.
Q: So overcoming the barriers to good pain management, as well as the assessment process, includes action from both the health care provider and the person affected by pain. What are some ways that laypeople can become better advocates for themselves or their loved ones?
A: Consumers need to become empowered with the knowledge that persons affected by pain deserve to get appropriate treatment, and that it does exist! Accurate information about pain can normalize the situation and help them feel that they do have a role in their own care. Information about treatment options, what questions to ask a doctor, and even basic communication skills about pain can be of great help in overcoming some of the barriers we’ve discussed.
At APF, we’re finding that this education is happening, and consumers are starting to need even more. Many of our publications have developed out of a dialogue with those who experience pain every day. For instance, our past publications have been primarily 16-page brochures. We are currently developing a more comprehensive (80-90 page) publication on treatment options, because consumers are becoming more sophisticated and want more than just basic information. We also have an active online community that has allowed us to use technology in much more interactive and effective ways.
Q: What are some basic messages that need to be heard by consumers and professionals about pain management?
A: No matter what the situation, something can always be done to manage pain. It may not bring about a cure or affect the ultimate outcome of the disease, but pain management can improve the quality of a person’s life and those around him. And to providers, I would say focus on a whole-person approach. People are not just their pain or their dying process, and this must never be forgotten.
Q: You are an excellent example of someone who became a knowledgeable advocate for herself, and now for others, because of your experience of being affected by pain. Can you please share your story?
A: In 1982, when I was 27, I was diagnosed with a rare ovarian cancer. At that time there wasn’t an adequate treatment for this or any other kind of ovarian cancer and not much to effectively manage severe nausea from the chemotherapy I received. My pain from surgery was managed well, but I also had significant joint pain from the chemo, and this ongoing pain was never addressed by my health care team. I started going to a cancer support group for young adults and found connection and community. One day I was sitting in a group meeting when I looked at the social worker who was facilitating the group and immediately knew, “THAT’S what I want to do with my life.” I ultimately became an oncology social worker, and have worked at a hospice program, a hospital-based oncology program, a non-profit cancer support organization and now a pain advocacy organization.
During all this time I’ve been able to blend a lot of my experience and interest in palliative and end-of-life care in a lot of my work. Every day I feel blessed to be able to do what I do – to work with patients and families, to write, teach, network, share. And this year I will celebrate 24 years of cancer survivorship. As one of my pain colleagues often reminds me, it’s not just work, it’s personal.
