PATIENT CHOICE: But what if its the "wrong" choice?!

PATIENT CHOICE: But what if its the "wrong" choice?!

November 2011:

So it is drummed into us since the start of medical school, how important it is to take into account patients opinions about their treatments, patient choice, and treating the whole person (holistic medicine).  We are told that getting patients more involved in their management empowers them, makes them more likely to adhere to the treatment plan and so all in all improves the outcome no end...

I met a patient in clinic during my oncology rotation that really challenged that view for me and caused be to really think about the consequences of patient choice.  Don't worry I'm not about to go on a hardline rant saying patients should not be given a choice, obviously I do not believe this at all, anyone with capacity is entitled to live their life how they wish (even if that way involves shortening it), but I think it is good as a student to learn what the ramifications of patient choice (in certain extreme cases) can be and how best to deal with patients when this occurs / they are resistant to what in your opinion is the gold standard treatment plan....

The patient, who was only in her 40's, had presented to her GP with a fungating form of breast cancer (see picture below), this extreme form at presentation virtually guarantees that however aggressive her particular cancer was, she still must have had symptoms/signs that something was wrong  long before she presented.  Below is a picture of what fungating breast cancer looks like, as you can see, something is very obviously wrong; the lump of the patient I saw actually looked a lot more severe than this (and I saw her late on, after she had received some treatment which had apparently improved the lump somewhat).

Fungating breast cancer

So why did this patient present so late? Well she admitted she had a distrust of doctors and conventional therapy, so she sought alternative therapies to cure her condition first.  When these did not work, she did eventually present to the gp, looking a bit like the picture above...  Unfortunately probably due to the late presentation, she was found to already have lung and bone metastases at this point.  This meant her condition was no longer curable but not that there was nothing conventional medicine could do for her.  She was offered chemotherapy to prolong her life and hopefully reduce symptoms.  Initially she was very reluctant because viewed chemotherapy as very toxic even though the form she would be receiving tends to be tolerated very well.  Eventually she did accept chemotherapy and then sods law, she was one of the unfortunate few who do not tolerate that particular form well, and was quite sick.  Naturally this hadn't exactly improved her opinion of conventional medicine!

During the clinic I saw the patient, the consultant was trying his best to help her in a way that didn't involve chemotherapy and that she would be accepting of.  There was a clinical trial open that he thought she would prefer as it does not involve chemo and thought would be a good palliative treatment for her.  This was really good doctoring in my opinion - he was trying to find a compromise in treatment that the patient would be happy with (or as happy as she would be with any type of conventional therapy).  Unfortunately at this point the alternative medicine option reared its head again, the patient wanted to go to a developing country to consult an alternative healer she had heard about there.  However going there would effectively mean she missed out on being in the trial.  The doctor was very patient with her (even though I'm sure some of her views grated against his own personal views) and just gave her the facts but told her the decision was up to her.

I suppose when it comes to it, that patient doesn't have very long left and it is much better that she spends that time doing what she wants to, rather than living a little longer but spending the whole time in and out of trial appointments when she wasn't keen on being in the trial in the first place.

Of course this patient is not alone in her views, or in having such a horribly negative outcome because of them.  Steve Jobs (Apple creator) had his cancer picked up early as it was an incidental finding... however sadly he spent years seeking alternative therapy cures to his cancer before finally agreeing to give conventional therapy a shot.  But as you can tell from his case, an alternative choice is not the sign of low intelligence or lack of decision making capacity, Steve Jobs was obviously highly intelligent and successful.   Basically I guess people have to be free to make their own mistakes - all you can do is give them the information, show them the evidence, but if they choose to ignore that then you have to just help them in whatever ways they will allow you and not let their choices change your standard of care.

A sobering reminder of what the consequences of ignoring medical advice can be