Few things are more difficult than caring for someone in significant pain. This is especially true when terminal illness causes greater and greater pain. Increased medication dosages often fail to provide the coverage needed; or, are effective for shorter and shorter periods of time. I learned most of what I know about managing pain while I cared for my mother who died of breast cancer, which spread to her bones and finally to her vital organs.
Mother was a woman of her generation: private, circumspect, never wishing to make much fuss and exceedingly firm of mind. Pain was not an issue for her throughout her life as she enjoyed a fairly high pain threshold. She could endure a significant amount of discomfort before she would admit to it and then had a tendency to downplay the intensity. I had admired this quality for most of my life until I began to realize that it was a factor - a negative factor - in trying to care for her during her decline.
I came to understand several simple rules. First, build a relationship with your health care providers. In the case of a terminal illness, a productive relationship with your hospice agency is crucial on a number of levels - most particularly, pain management. It is the hospice movement that has developed many of the current protocols for managing pain effectively. They are specialists - particularly the nurses who understand the medications being used and why one drug may be preferred over another. They are well-versed in alternative pain management techniques. They are resourceful in putting together the best possible team: doctor, nurse, pharmacist, social worker and allied health professionals. They will help you find the regimen that works for your loved ones.
Second, know the patient's reactions to the medications. Try to be creative if taking pills is a problem. On occasion, we put mother's drugs in small milkshakes or made liquid meals with V-8 and an egg together with a little lemon juice, ice and the medications. These were refreshing, nutritious and mother didn't have to contend with swallowing a set of pills when she wasn't quite up to it. It is useful to understand what works with your patient. Medication management is most effective when the caregivers pay a lot of attention to how the patient responds to a certain drug and when the patient is truthful about how the drug affects her pain. Communicating this information to the health care providers is also essential - and so much simpler when a positive relationship has been built.
Third and very important: Keep ahead of the pain. When a patient, such as my mother, is likely to minimize her discomfort, it becomes very difficult to persuade her to be aggressive about taking her medications. However, the value of keeping pain coverage constant is that the patient does not have the highs and lows that result from letting medication ``run its course'' before taking more. Patients usually have better results when taking pain medication on a 24-hour schedule. This keeps coverage in place so that the patient continuously experiences relief from discomfort.
These rules sound fairly easy to manage, but can be a great challenge in the face of a serious or terminal illness. The value of working with your health care providers early on in the disease process is the ease that develops over time. Initially, mother was not in favor of bringing Hospice into her home. However, during the routine visits each week, mother gradually began to relax. Through their increasingly candid conversation, her nurse became attuned to mother as mother became accustomed to her. This was invaluable as mother's condition worsened.
Ninety-five percent of the time, a patient's pain can be managed effectively with oral drugs, a medicated patch, or intravenous drugs administered by use of an electronic infusion pump. When mother's oral meds no longer effectively relieved her pain, we combined the patch system with the oral drugs. This protocol worked well for a time. The infusion pump was a final remedy and removed her pain entirely until her death.
While the idea of staying ``ahead of the pain'' is simple in concept, it is very difficult in practice. We live in a culture that values strength and independence and force of will. I've often heard people say ``I don't so much as even take an aspirin!'' In terms of pain management, this attitude can be a major obstacle in consistent comfort. The heartbreaking thing is this: If her pain distracts someone you love, she cannot focus on the things she cares most about.
It is hard to fight about pain medication with someone who is essential to our lives and whose life is ebbing. If precious little time is all that remains, then I contend that pain ought not to be any part of the picture. With current medications and technologies, there is little need for anyone you love to be in terrible pain. There are certain unique cases where options are few and insufficiently effective. The caregiver and the health care team working together with the patient can create a treatment plan that assures the patient comfort throughout a complex illness, the final transition of which may be death.
The pain management techniques that we learned over the course of mother's illness and the particular skills of our Hospice team made it possible for her to remain in her home of 40 years. Her quiet death on an early summer morning gave testimony to the peace and comfort of mother's final, painless rest.
Marijo C. Toner is the immediate past president of Hospice and Home Care of Juneau.