In a support group that I facilitate, we recently were discussing our relationships with our doctors. So many of the women have had bad experiences, especially, with their surgeons. Now, this may be true in all of cancerland, but in the case of ovarian cancer, it is especially true. So many women report that their original diagnosis was put off because of doctors who were not listening to them, or taking their symptoms seriously. Also, many of the doctors did not do the proper testing and/or did not refer to the proper specialist (a gynecologist or gynecologic oncologist).
But even after they were finally diagnosed, their experiences with doctors weren’t always the best. Women have told me over the years that their surgeons (usually gynecologic oncologists) are sometimes very negative and doom and gloom. One woman, Lee, told me her doctor said “You’re like a plane going down”. Several others have been told that their odds for survival were five (or two or three etc.) years or less. Most of these women are still alive years later, beating the predictions. My own surgeon told me, very condescendingly, while I was recovering after surgery, “Well, we may not have saved you, but at least we bought you some time”. This was sixteen years ago. And by the way, he has now retired.
The idea that we all need to advocate for ourselves and our loved ones is not new. But shouldn’t medical professionals also advocate for us as patients?
Every healthcare provider, from the blue collar worker whose primary responsibility is the maintenance of the operating room suite furnishings, to the cardiac surgeon performing high risk, complicated and life saving surgery, should be a patient advocate. What exactly is patient advocacy? The moment a patient makes a decision to trust their life, health and wellbeing to another person, that person takes on an advocates’ responsibility to protect the rights of the patient.
What rights need protecting?
The right to privacy. All billing information, including social security number, age, health information, such as blood type, reason for seeking health care, are all privileged information that should not be shared with anyone not directly involved in the care of the patient. An example of information needing protecting would be the patient’s chart. The right to be treated in a fair and unbiased manner. Regardless of a patient’s sex, religion, national origin, sexual preference, insurance, and or age, patients should be treated with respect, given equal opportunity to the same level of health care as others. An example of this would be the Medicare patient given the same treatment as the private patient.
The right to be treated with dignity. Patients undergoing procedures in the hospital are often stripped of their clothing, glasses, hearing aid, wigs, etc. Healthcare workers may take it for granted that the patient understands the importance of this and may not fully explain when they are going to be touched, such as when electrodes for EKG are being placed on the patient’s skin, or uncovered, as when a stethoscope is placed on the chest to allow the worker to listen to the heart. The surgery patient needs advocacy the most. Surgery patients, in addition to having their clothing and belongings removed, are often put to sleep and cannot defend or protect themselves. Not only are they strapped to a table by a safety belt and arm straps, they are usually naked. They have to be kept warm. Nothing should be allowed to rest or press on their body, such as tables which hold instruments, or the surgeon or nurses. Unnecessary exposure of their bodies should be avoided. Only the body part being operated on should be uncovered. The anesthetized surgery patient is at the mercy of their healthcare staff.
I would add that another form of patient advocacy, especially for the cancer patient, is care, concern and sensitivity for the emotional and psychological roller coaster that they are riding. Common decency and sensitivity should dictate that giving a patient a time frame for their survival (unsolicited) is just wrong, unnecessary and usually inaccurate. If a patient asks a doctor about her odds for survival, then the logical response would be to give statistical data regarding their diagnosis. Also, why not put a positive spin on it such as “We are going to do everything in our power to help you to beat this.” An opinion about how long someone is going to live is, to my thinking, rather cruel and cold. It is also just an opinion and I have so many times seen them proven wrong, I wonder why they would even bother saying it. Bottom line: They shouldn’t. They should be advocating for their patients and one important way of doing that is to offer hope and strength.
How is your relationship with your doctor? Have you received news of a diagnosis/recurrence or other not-so-great news in this way? I’d love to hear your comments!
P.S. – I will go into why I believe some doctors do this in another blog, along with personal experiences with some wonderful doctors and what to do if you aren’t comfortable with your doctor.
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Robin is a cancer/survivorship coach for women diagnosed with gynecologic and breast cancers, who uses powerful questions and active listening to help her clients reach their goals for treatment and survivorship as well as help women discover self-empowerment, inspiration and their own amazing courage. To schedule a free 30-minute strategy coaching session or for more information about group or individual coaching, go to http://www.womenscancerconnection.com or email her at firstname.lastname@example.org.