The Ethics Of Care In Medicine" By: Debbie I was taking a shower and noticed a lump that just didn't feel like the others had in the past. I had always said that if I ever had breast cancer I wouldn't know it. After all, I had fybro-cystic breasts, which are lumpy and swollen most of the time anyway! Wrong, I did know, call it intuition or whatever, I knew. I told my husband that I found a lump and that I had a feeling that it was breast cancer. My husband Steve has always been a "Look-on-the-bright-side" kind of man, so of course he said: "Debbie, don't worry I'm sure it'll be fine, but you should make an appointment to see the doctor. Having three teen son's and only being 38, I knew that it was my responsibility to know what I was dealing with, no matter what. So I made an appointment and my doctor ordered a mammogram. In the meantime I had signed up for a college class, "Ethics."
I recall the day that I had signed up for Ethics class. I needed the class to fufill my degree requirements. Little did I know then, how much , that an "Ethic Of Care" would be a motivating factor in my life and the lives of other people that meant so much to me.
The dreaded word "cancer" permeated my life from all directions. It all happened so fast. Week one of Ethics class, my cousin's wife was diagnosed with breast cancer. Week two, I was told that my mammogram looked suspicious. My husband and I received a call from my mother-in-laws's doctor in N.Y. My mother-in-law was in the hospital and her breast cancer had metastasized throughout her body; she was not responding to treatment. Week three I had a surgical biopsy (lumpectomy) to remove my lump for verification of cancer, at first the radiologist only saw pre-cancer. Week four, my cousin had a radical mastectomy. Week five, I returned for surgery, this time I had what is called a segmental,mastectomy with auxillary lymph node removal; my mother-in-law died the same day. This tissue was sent to another pathology lab, and there the pathologists stumbled upon another type of cancer in my breast that they were unaware of at first. The pre-cancer and another called colloid cancer! From week six on my cousin has been going for chemo-therapy treatments and will be getting radiation when the chemo is done. I am currently going to Burlington five days a week, for six weeks of radiation; two more weeks and I will be done. Hopefully, all of this chaos will be over then. Can't imagine why everything else is a blank when I look back at this time in my life!
By now, you can probably imagine why an "Ethic Of Care," is important to me. What is a good "Ethic Of Care?" To me it is the responsibility to respect the rights and choices of others, and also, the responsibility to recognize the need for human interconnection, compassion, understanding, and empathy; this holds true, especially in the "Ethics Of Medicine."
My mother-in-law had breast cancer that had metastasized (spread) throughout her entire body. She was admitted to an hospital Oncology Unit in New York for the last four months of her life. While my husband visited his mother and spoke with her and his relatives on the phone each week, it was evident to us that she was not receiving the ethic of care that all terminally ill patients should. On numerous occasions she had asked the oncology nurses to please leave her personal things (like her reading glasses) on her nightstand so that she could reach them, but everyday these items would be moved to another location in her room. Then, she told her oncologist and the oncology nurses that her hip had hurt really bad, and she could not tolerate the pain. When the family called and spoke with the staff, the family was told by the nurses that she was a chronic complainer. Maybe she did complain a lot, who knows, but Lord knows you shouldn't complain when you are in the terminal stages of cancer! The staff assumed that she was addicted to the morphine-drip that she was receiving for the cancer, therefor wanting her dose increased. We all know what the word "assume" means! Finally, a family member demanded that the doctor order a CAT scan. The scan revealed that her hip had been broken for a least a month. The fracture was spontaneous, due to the weakened bone-marrow. I believe the staff at this hospital modeled themselves accordingly. The oncologist in charge, consistantly exhibited a dominate, non-empathetic behavior, which manifested itself in the rest of the staff.
Unfortunately, my cousin 's wife also had to endure a lack of an ethic of care. A couple weeks after going home from the hospital where she underwent surgery for a radical mastectomy, she was sent to an oncologist. She then began having out-patient chemo-therapy treatments at her oncologist's clinic. On the fifth day of treatment, she was told by her oncologist that he would not continue to administer treatment until the agency that was paying a portion of her treatments send him payment. Talk about an extreme case of a lack of humanity! Bewildered, frightened, not feeling well, and in a state of panic, my cousin-in-law drove across the city to the insurance agency. After speaking to several representatives, begging them to give her some sort of payment for the doctor; they gave her a check. Somewhat relieved, thinking that now she would be able to have her chemotherapy treatment, she then drove all the way back to her oncologist's clinic. Upon arrival, she was told by her doctor that it was too late; he was closing for the day. He had also informed her that his nurse had already went to the pharmacy to pick-up all of the chemo-therapy intravenous medications for the following day's patient's; if she wanted her treatment the next day, she would have to pick-up the medication herself. Can you imagine how numb she must have felt? I related this story to my radiologist and he said: "You know what the sad thing is? She probably was extremely scared and didn't realize she had choices." I later thought about his statement and knew he was right. My cousin-in-law probably felt that she had no choices at the time because she feared the chemotherapy as an immenent necessity for her cancer, and also the fact that she had to rely on the agency to make payment to the doctor. I also believe that she did not exert her voice for fear of being labeled as an unruly, emotional, hard to get along with female patient by her patriarchial doctor. Here was a woman whose world had been turned upside down with a serious disease, who was still in mourning for the loss of her breast, a woman in her early fifties, brought up to believe that she had no right to insist on a good ethic of care.
Unfortunately, in my cousin-in-law's case, there was no doctor/patient relationship of trust, which any good Oncologist or Radiologist will tell you is one of the most important parts of a cancer patient's care. All patients deserve this!
If I could choose to not go through the frightening experience of being told I had breast cancer, I would, but I did not have the choice. In a wierd way, I know that this has been a learning experience, and I can find positive in it. I too, experienced a lack of an ethic of care. I was sent to see an Oncologist, and on the day of my of first appointment I showed up fifteen minutes early out of courtesy. My appointment was at ten o'clock, and I was escorted by a pleasant nurse into the examining room at 10:15, where the nurse took my vitals and told me to undress, put on the johnny and that the doctor would be right in; she then left . So far so good. I waited, sitting on the examining table for another fourty-five minutes wondering why the doctor was not coming in. They should have left me in the lounge; at least there I could have read a magazine. Needless to say, just about when I had felt that I had waited long enough and was ready to comb the halls looking for the nurse (johnny and all, at this point I didn't care who saw me) the doctor walked in. The doctor introduced himself while looking at the tiles on the floor. Hello! I'm up here on the examining table! Thinking that I would teach him a lesson in courtesy, by example, I jumped down from the table and extended my hand during his introduction. He then sat down in a chair, crossed his arms Really bad body language! and rested his arm on his chin, and then proceeded to tell me that it took so long because he was reading through my records, and also made a call to confer with a colleague of his; all the while still staring at the floor. No excuse! My surgeon had sent him my records at least a month before, and how much effort would it have taken him to tell a nurse to inform me that he was doing this? This was my very first appointment with an Oncologist. I needed to feel a sense of understanding and compassion for the fear and uncertainty that I had, not just a medical opinion and advice from someone who was a stranger to me. Think about it...I was supposed to put my trust in this man's hands...in the decisions that he would offer concerning my disease and my LIFE! He was to be my Oncologist.
Rightfully so, I have received and witnessed an excellent ethic of care with the rest of my doctor's. My Surgeon, Radiologist, Gynecologist, General Doctor, and all of their staff, have informed me of all of my options and choices, treat me as an individual, act like I am a human and not a number or caseload, and have always been available to answer all and any of my questions. I don't look on this as a privalege. It should be that way! One of the best examples of an ethic of care that I recall happened one day while I was waiting for my radiation treatment. On this particular day many patients had come to make-up missed treatments. One of the machines had broke down the previous week, and these patients had to all be rescheduled. As I waited for my treatment (which was on another machine) I watched each patient walk in and smile as they noticed the juices and baked goods that lay on the table before them; the staff had made themselves. What a concept...staff that really cared about the people they took care of! Patient's that had been sitting invited other's to eat as they walked in. Some even commented, "Yup, they're sorry, and they're kissing up because the machine broke down last week." One patient said, "Darn, if I knew this was going to be here, I wouldn't have eaten my breakfast before I came." The light hearted comments made all who were there smile and laugh, and as we all know there is no better medicine than laughter! The most important thing that I had learned that day was that all patients deserve this type of an ethic of care.
Looking back on my mother-in-law's, my cousin-in-law, and my own experiences with medical staff...when facing a serious disease...I feel that an ethic of care is sadly lacking in the medical field today. I asked my radiologist at Fletcher Allen what he thought about the care in the medical field today, and he replied: "You know, when I started practicing medicine over twenty years ago, there was an excellent ethic of care, but Medical Science and Technology wasn't great. Making a diagnosis and treating serious diseases was not as accurate as they are today, but medical staff put a priority on taking care of the patients. Today, medical Science and Technology are much better; we are now able to treat many more diseases, but are forgetting about the ethic of care. I believe that in the future, we will realize that an ethic of care is just as important to a patient's well-being as medical Science and Technology." Wouldn't it be great if his predictions come true!!!
After observerving both female and male medical staff and student's, I have concluded that an excellent ethic of care in medicine is set by example, from physicians that are in leadership positions who feel a responsibility to themself, their staff, their student's, their professions, and last but not least, the patients they care for. They greet patients with a smile, ask sincerely how they are feeling, show sensitivity and genuine concern, supply information, have the time to answer questions, and exhibit an over-all nuturing ethic of care. You may think that this is an usually high ethic of care, but the fact is that this should be the standard in the medical field, not the unusual!
I have once again had to undergo another operation. I will say that my surgeon and his staff are still totally unwaiving in their excellent ethic of care. Everytime I undergo a new "scare," he always takes care of me as if he were taking care of a family member of his own. Before my last operation (the third-another biopsy for another lump), he looked me straight in the eye and said: "We'll keep fighting and beat this if it is cancer again, Debbie." I knew then that I didn't feel like I was going in fighting this monster alone, and that doctor's really are HUMAN! I knew that my surgeon was all along, but still this really meant a lot to me. If battletime comes again, I have no doubt that we will fight just as hard. I have been cancer free for two years now. During my last appointment the mammogram showed two small pea sized lumps that are between my lung and the rib cage. My surgeon went over the pictures with me and told me he would suggest a bone scan. I went for the scan and then went back to my surgeon again. The lumps look like they are damage caused by radiation to the breast. He gave me two choices: 1) To cut through the ribs and take out the two lumps to be sure, or to closely monitor the lumps or density's and repeat the bone scan again in three months. I elected the latter. I try not to be pessimistic nor optimistic, just realistic. I guess that way I feel that I can keep a clear mind and gather as much knowledge about breast cancer that I can. Knowledge is wisdom, and wisdom is empowerment to me.
All of you reading this will probably have, or know someone in the near future who has cancer. With this in mind, think about the ethic of care that you would want yourself, or your loved one's. As a human, a female, and a patient who has had cancer, I have a voice, a right, and a responsibility to affect a change in society's ethic of care in medicine today. Hopefully, sharing these experiences with you today, will affect a small change towards a better ethic of care. (Written 1996 and 1998) Debbie
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