Each month as part of the Cancer Experience Registry, we ask you to respond as the expert in your own care and help make sense of the cancer experience. If you have any questions you would like to ask, email firstname.lastname@example.org.
Share Your Journey.
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Question: What Does Patient-Centered Care Mean to You?
- Providers who are focused on what I need, rather than taking "this is what we do" attitude.
- To respect my priorities in treatment decisions.
- It means more support and understanding the treatment that lies ahead.
- For me it is all kinds of care -- which is supposed to be given to the patient or to her/his family: Financial, medical, psychological... before, during and after the treatment in order to ensure her the maximum of well-being.
- Give me the information and let me make the choices.
- To me it means taking care of all the physical, mental and spiritual needs of the patient. Our thoughts and mental condition have so much to do with our handling the challenges of having cancer and its treatment and side effects.
- It means that the medical team will discuss openly and clearly the best options for me.
- The term "patient-centered" means that I have the right to help decide my plan of care and not have to depend solely on the Dr. to decide what kind, if any treatment, I should receive?
- Putting the patient's concerns first, e.g., emotional issues, financial matters or types of treatments.
- It means I am treated with respect when I challenge a decision or ask for more information. It means that I am a "partner" with my physician as to the treatment plan. I am asked my opinion about what I want to do and why. It means if I want to take Aromasin for a full 5 years on top of the 2 I had Tamoxifen that I am allowed to without a condescending attitude by my physician.
- Patient-centered care, to me, means focusing on the whole person, not just the disease. It includes emotional, spiritual, psychological, physical, and the effects of cancer on the quality of life and what is lost to that patient—perhaps permanently.
- The doctor and patient sharing treatment options, including what it will mean for life style. Throughout my journey with cancer, my oncologist has listened, discussed complementary therapies that enhance treatment effectiveness. To me that is "patient centered care."
Advocating for Yourself
Q: What Does it Mean to be Your Own Advocate in Making Decisions About Your Treatment?
- Having knowledge, more knowledge, and more knowledge about your choices. Knowing that it is OK to say NO, if you choose to go with other options. If you don't agree with your Dr., go to another to make sure the direction you are THINKING of going is the best for you.
- For me this means that I am the first step to decide on the treatment, however it could be better in collaboration with the doctors or other medical care advisors.
- Own your disease. It isn't anyone else's, therefore, do your homework. Find reliable sources for information and read everything that you can about it. If you don't understand, then write your questions down and ask your practitioners. Start with the nurses; they relay information far better than the docs. With information comes power.
- It means the patient educates themselves so that they can make informed choices and decisions. When need be, speaking out/up, providing appropriate information to health care providers and taking a key role in one’s care.
- It means I can ask questions and challenge anyone on my team to explain what my best options are.
- Research, know your disease and treatment options. Bring a support person to each visit, they may hear or ask questions you may not have thought to ask. Don’t be afraid to disagree, this is my life!
- It means, if I want to, I can take advantage of clinical trials, and also decide what treatments I will have access to.
- That patients need to steer the ship. Actively talk to the doctors, nurses and staff regarding EVERYTHING.
- To be my own advocate means having a choice (if possible) about treatments, and being given information about integrative treatments available. My surgeon has been reluctant to advise or to give a referral about treatments that would be of benefit to my particular circumstances, such as lymphoma, speech therapy, etc. It seems most of his focus is on the surgical aspects. It would have been wonderful to know that there are Patient Advocates to help with the maze that is the Cancer Experience, or to have had a general Oncologist to guide me through this experience. I felt as if I "stumbled through" the whole process.
- It means that sometimes you need to be a "difficult" patient. I was told several times, that patient who comply without question or complaint get better treatment. I do not believe this.
- It means that I should educate myself and make informed decisions regarding testing, treatment and if necessary palliative care for end-of-life situations. I have done this and informed my doctor as to my choices.
Communicating With Your Doctor
Q: How Has Your Cancer Experience Changed Your Perspective on the Ways in Which Doctors and Patients Communicate?
- I learned that I have to play a responsible active role in my medical treatment. I have to be disciplined to follow through and actively address my role in treatment. This includes articulating my needs, reaching out to locate providers of what I need...for example, nutrition, psychological. Relaxation therapies, acupuncture, reiki, telling my story and asking questions and sharing resources with other cancer patients and survivors. I had to take on the responsibility to meet my needs in order to maintain the emotional and physical strength to deal with the treatment of the disease. I had to take care of me and have fun, make fun in order to survive.
- I've had to transition from being an oncology registered nurse to an oncology patient … I had to learn new ways of communicating. I SAW too much, KNEW too much. I could tell when I was being placated, disrespected, and ignored. I had to curb my enthusiasm with some practitioners, fire more than a few, and learn when to let my guard down and when to keep it up. I am still learning. Because I started with such a strong base of knowledge about my disease, and have a curiosity about alternatives in disease care, I've cracked some ceilings in convincing doctors to TRY something new and outside of their regular practice. As a result some of my suggestions (which were successful) were put into practice by the doctors with their other patients.
- As a patient, my input is an important piece of the puzzle. My doctors often are in the dark regarding test results, test that have been ordered, procedures that have been done and I keep them informed. I thought computerizing the information was going to solve the problem, but, so far, has not.
- Communication is key when going through the cancer experience. Patients are generally uninformed about the process as a whole, and often patients have little time between diagnosis and treatment.We seldom have the time to investigate the process or not enough knowledge to know what questions to ask. This needs to change.
- One of my doctors told me that they never know how much a patient wants to know and they don't want to upset someone who prefers to live in the bliss of ignorance. That made me realize that I have to ask what I want to know. If I don't know what to ask, I need to tell my doctor just that, and that I want the answers to questions I don't know how to ask.
- I trust doctors far less than I used to. I now know that doctors don't stay up to date with the latest research, and give out advice that is just plain wrong. Doctors don't listen and push for treatments that don't fit with my life. I have to be the expert and let the doctor be the hands that do the work that I want and can't do for myself. I wish it wasn't like that. It was necessary, because my doctor didn't tell me what I needed to know.