Wednesday, June 12, 2013

What Emotional Support Should a Doctor offer? What should they say?

Not long ago, I took a survey on Advanced or Metastatic breast cancer (MBC).  One of the questions was whether or not our doctors had supported us emotionally after diagnosis.  I struggled with this question.   In talking to a breast cancer surgeon who worked with several breast health groups who said that she didn't think that women were given the information they needed, and in essence that things were minimized.

More thought on my part. This is  a really difficult question.   For one thing, what does emotional support mean in this context?  Does it mean a hug? Does it mean sharing a good cry together, or does it just mean acknowledging the patient's fear, anger, pain, confusion and all the myriad of other emotions that the newly diagnosed advanced or  MBC patient feels?  Or what about the patient who has struggled through treatment and failed?

I feel that being an oncologist is emotionally difficult and that they have to observe distance from their patients in order not to burn out...too many patients just don't make it.  This is not to say that they shouldn't be sympathetic or understand where their patient is coming from. I do understand, that they do form connections with some of their patients, they are, after all, human as well.   In addition, there are some doctors who are clinically very good....but need a lot of help in the "bedside manner" department.  Whenever a doctor makes a pronouncement as to how many months, years, etc. a patient has, I want to check to see if he has a belly button, or if he really IS God.

Also, each patient approaches cancer diagnosis in different ways..  Too much information terrifies some, others, like me want to know the details. This can present problems if the doctor doesn't understand his patient, or the wrong types are partnered. Take, for instance, me and my husband's cousin.   We see the same oncologist.   The Divine Ms. M doesn't want to know the details, whereas I want the whole skinny.  I take the viewpoint that the oncologist and I are partners, not me being a guinea pig.  When I don't get the whole picture, or what I perceive is the whole picture, I let him know that I don't feel like I am fully informed and I don't appreciate it.  Doctors can't read our minds and they have to learn about us.  Sometimes that works, other times I suggest that patients look for an oncologist who more closely aligns with their needs and expectations.  Cancer is hard enough to deal with without  dealing with a medical deity.

One thing which I do think is extremely lacking is access  to a social worker.  In the past, many of us, me included, got treatment in a facility associated with a large hospital.  Social workers were on staff to help us with our emotional needs.  Now, many go to smaller, independent cancer centers who don't have social workers (or financial people, but that's another issue) to help us through the morass.  I think this IS a problem.

Don't get me wrong......we need doctors who understand that we are going through a difficult time and we don't need to be hit by sledge hammers time after time....and that we are individuals who need to have all the information given to us in a compassionate, yet truthful way....but I  am not sure that our doctors need to be the main providers of emotional support....although they can be supportive in the way we are told and recognizing where we are and working from there.



  

3 comments:

  1. We have something amazing here in CT which is now being adapted by health care professionals in this field. It is The Looking Forward Program which is now affiliated with the Smilow Cancer Institute here in New Haven. Ellen Swirsky had the vision to start this program after being diagnosed and going thru chemo 17 years ago. She focused on the just such inadequacies of her treatment and through this program, patients are now able to get the care and support they need. Encourage your doctors to check it out.

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  2. Help! I have been dealing with BC since 2005 and MBC since 2010.Recently I have been on Faslodex which for all intentions was good. It was the best at keeping the cancer numbers down. HOWEVER, the periformis muscle and the sciatic became inflamed and I requested stopping the meds. The doctor was against the idea due to the simplicity of care except for the walking. She has placed me on Xeloda to begin 6/17/13. I preread the information and asked about a product to avoid the mouth sores, trying to be proactive! help myself suffer less, the nurses said NO No prescription and No there is nothing but magic swizzle to give me. A pharmacist said there is a prescription available but had to be a prescription to take to try to eliminate the sores; Have you run across this before? Do I press the questions? Or do I sit back?

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    1. Stomatitis with Xeloda is Not a given. Your oncologist can give you a sheet with information on a salt water or baking soda rinse, which may help. I never experienced any mouth sores with Xeloda, in fact, only 22% of those in the trials reported it, whereas 47% experienced hand-foot syndrome. If you find that you need it, your doc can prescribe it. We commonly call it "magic mouthwash." I have written other posts devoted solely to Xeloda. Just put it in the search box at the top side of the blog.

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