Article previously published in the Cutaneous Lymphoma Foundation's Forum 2014 Issue 3 newsletter.
Some time ago I was asked to give an interactive session at a “Patient Survivor Day” at a major Boston hospital. I titled my presentation “How To Talk To Your Doctor- A Patient Empowerment Workshop.” I had many attendees and filled up a large room with many patient survivors, as they called themselves. Many patients were accompanied by their families; all excited and yet somewhat anxious to share their stories, both the “good” and the “bad” experiences with their physicians.
I began with my opening comments that would set the stage for the entire session. I looked out into the audience and said with great reverence and pausing after each word. This…is… your…life. This…is…your…life. You have the right, indeed the obligation to yourself and to those who love you, when speaking to your doctor, to ask any questions you have, to get clarity about anything that has been said and to feel free to keep the conversation open until you are satisfied that in the days to come you can ask about any aspect of your treatment. Let there be no judgment from your doctor about your suggestions of using complementary medical approaches. You should always feel not only cared for but cared about, respected for who you are, someone who has a dis-ease and who wants to do the best to get better. That it is your right to be pain-less and embraced, not necessarily physically but emotionally…because THIS IS YOUR LIFE!
Please know that you should expect nothing less than the embodiment of this age-old medical expression…to cure sometimes…to relieve often…to comfort always; because you are somebody who is important, to yourself, and to those close to you. But when you have a disease, it can be so difficult to find this inner strength, this power, and this radiance to represent your SELF. That is why you should always strongly consider bringing an advocate to the doctor’s visit, a family member or close friend. And it is appropriate…because it is your life! Don’t be ashamed of doing this or think that your doctor my feel intimidated. Remember, this is all about you, not your doctor.
The point about patients feeling emotionally “weakened” during a physician visit was brought out so strongly during my session when a group leader who actually teaches empowerment to patients told her story. She had been teaching her course over weeks to a group of patients, acting as a coach for those who felt weakened emotionally when in front of their physician, when they felt seemingly confronted by their physician. “It is ok to speak up” she said she would say in heartfelt tones. And then one day…she was in front of her own physician being told that she had breast cancer…and she melted emotionally. She finally knew how difficult it was to speak up…and she was the coach!
So it may not be so easy.
You may feel very vulnerable or in shock when first told that you have a significant disease. For most of your life your good health has never been threatened. And even if you could engage in a conversation during the visit and bring up the fact that you might want a second opinion or try additional therapies, you might wonder whether these statements or actions might seem disrespectful to the very person in whom you want to place your trust?
What might you say or do to still be your best advocate while still feeling that you are working with your doctor? Here are some suggestions that you might find helpful. They are in no special order. I suggest them with this one caveat: it’s not WHAT you say, it’s WHERE it’s coming from. Let your words come from your heart and with much respect for the physician.
- “Doctor, I’ve heard what you’ve said and it’s quite a shock. I’m going to need some time to understand everything. I HOPE IT IS OK to discuss this all again with you once I’ve had a chance to talk to my spouse. I’d like to set up a phone call one day very soon when you are finished with your patient schedule. I know I’ll have questions and I don’t want to feel that I’m throwing off your schedule. “
- “I consider you a fine doctor and I do trust you, but I know that my spouse may want another opinion; I hope you will understand.”
- “You may consider this request silly and not in keeping with your own medical opinion, but I hope you will allow me to bring up complementary approaches to your care. If nothing else, it will give me the feeling that I am helping in any way I can to make me better.”
- “May I ask you to think about these themes in my care:
- Always look happy to see me.
- Always support me in the many ways I try to make myself better and please do not judge me.
- Be gentle with me when you give me any news about my condition.
- Please give me the time I need and sense when I need more time and do your best to make time available in some way sometime soon; in return, I promise to help you in any way I can to make me better.
- Thank you for being so sensitive and understanding of me and my needs, because behind all I say and do is my theme. It is my life. It is my life.”
I truly believe in the power and the sanctity of the patient/physician relationship. It is built on mutual respect, and that the primary beneficiary be the patient. It should be expected that patients have the absolute right to ask for what they believe is needed from their physician and that physicians embrace this openness and honesty and discuss without judgment a mutually satisfactory course of treatment. Ultimately, it is all about the patient, for it is their life.
