Palliative Care Is Not Hospice: Seek It Out Early
There is a common misconception that palliative care is synonymous with hospice. And that to receive palliative care you must be enrolled in hospice. This is not true and it is to the detriment of many bladder cancer patients that they do not seek palliative or even know it is an option.
What do palliative care doctors do?
Palliative care doctors are skilled in managing pain and other bothersome symptoms in order to ensure the best possible quality of life for their patients. This could be a patient with arthritis or emphysema or cancer. With regard to cancer, they are experts at managing pain and will work hard to find the right pain medication formula for a given patient. We were far into managing my husband’s pain from metastatic bladder cancer before we discovered palliative care. At the University of California, San Francisco (where he received treatment), the palliative care clinic is called Symptom Management. So you may have to search at your institution to find it.
Keep asking for palliative care
If there is one thing you learn as a patient and caregiver in the US healthcare system, it is that you must be your own advocate. This is even more true for cancer patients. If your pain is not well managed or if you have side effects that are hard to tolerate, keep asking about palliative care experts. Many hospitals, especially National Cancer Institute (NCI)-designated facilities, have specialized teams with this expertise. But sometimes oncologists will not offer this option or may even be unaware of it. Research the system yourself and keep asking until you find it. You deserve to have your pain and symptoms managed well so that you can enjoy every day.
Have your views towards bladder removal changed since you were diagnosed?