Tim was diagnosed with advanced head and neck cancer requiring concurrent chemotherapy and radiation. After two weeks of aggressive treatment, many patients find it extremely difficult to eat. It may be unbearable to swallow food with xerostomia, odynophagia, dysphagia, or stomatitis.
To meet Tim’s nutritional needs during treatment, the healthcare team suggested a prophylactic, percutaneous endoscopic gastrostomy (PEG) tube. Tim complied with the recommendation to receive a PEG tube, but he never used it. As a result, the patient suffered. He lost a significant amount of weight due to his inability to achieve sufficient nutritional intake.
You may be wondering why a patient would consent to a surgical procedure and not follow through with the treatment plan. In this case the health insurance company would not pay for the tube feeding formula and Tim was unable to afford it. Tim argued with his insurer. He felt that the formula was necessary for his survival and that the expense should be covered under his medical plan. The health insurance company disagreed. They argued that the patient would have to pay for food if he were able to eat a normal diet; therefore the patient would be responsible for the expense of his formula.
Tim was visibly angry when he discussed the conversations between himself and the insurer. In addition to the stress of having a stage IV cancer, there was the financial stress of the treatment. Fortunately, Tim was able to finish his treatment without alternative nutrition support, but it wasn’t easy for him or his spouse. Tim was unable to eat solid foods, but he forced himself to drink some high-calorie supplements while experiencing severe odynophagia. He used free samples of liquid nutrition supplements provided by the cancer center and he purchased as many health shakes as he could afford.
Tim’s story is not a success story. Tim still lost weight, lean body mass, and strength. His quality of life plummeted while on treatment. His spouse suffered too as she felt helpless to meet his complex needs. If money were no object, his cancer journey certainly would have been more tolerable.
As a healthcare provider, it’s hard to watch a problem like this unfold without offering a solution. In the event you encounter a similar patient, please refer him or her to the Oley Foundation.
The Oley Foundation keeps an updated list of donated tube feeding supplies that are available without cost. Once patients find the product that they need, they can arrange to have it shipped directly from the donor. The only expense is the shipping cost.
When a patient is struggling financially, which organizations do you refer them to? Please share your resources so that we can all learn from each other and help improve the quality of life for our cancer patients.