Friday, March 02, 2007

Does not read

When I first saw this patient, there was a note in the chart from the front desk saying "patient does not read". I asked if this was a deliberate decision from the patient, or whether they had meant to say that the patient was illiterate and could not read.

Unfortunately, the latter is true. The patient is a retired janitor who is somewhat "developmentally delayed" (I think that's the current correct term), and has never been able to learn to read. He has no family and is functional enough that he does not have a guardian or someone with power of attorney.

This poses a difficult situation because I diagnosed him with prostate cancer after doing a biopsy, and tried to explain to him all the options available for treatment. Prostate cancer is a disease where there are several treatments choices available (surgery - open or laparoscopic-, external beam radiation, brachytherapy, cryotherapy, observation etc...), and the urologist and the patient arrive to a decision together after much discussion.

Well, there wasn't much of a discussion with this patient because he did not truly understand all risks and benefits involved with each option. I did send him to see the radiation oncologist who agreed with me that the patient has limited comprehension about the options.

The patient is quite pleasant. He will follow all the instructions we give him, and our staff has been working extra hard to call and remind him of all his medical appointments (X-ray, labs, office visits etc...). But this is a tricky situation. The patient obviously needs treatment, and I am in the awkward position of deciding for him what the next step should be.

14 comments:

Anonymous said...

The situation you describe is a tricky one and this patient is fortunate that you are ethical. An option that you have is to contact the ARC (Associate for Retarded Citizens) and asking them what options you have as a provider working with a person with some delays but not a full-time carer/assistant. They are very knowledgeable and have many years of experience helping their clients/family navigate the complexities of interacting with the mainstream world. As the sister-in-law of someone who has severe challenges, thank you for considering the needs of this patient beyond his cancer diagnosis.
Becky

Mama Mia said...

This is a tough situation. As you said there are a lot of treatment options for prostate cancer, and it is hard for anyone to cipher through them, much less a person who cannot read to help clarify his choices! He is lucky he has you to help him.

Anonymous said...

I'm a physician and I don't think I truly know which of those options is the best. Explaining odds ratios and recurrence chances is probably an exercise in futility. I suppose the best you can do is explain the side effects of each as simply as possible and try to get his input.

SeaSpray said...

Does he have a close friend? We have a family friend who would seem to be like your patient. He does live independently, drives and works full time but he does need guidance in certain areas. He is fortunate in that there are some people who are consistent in their friendship and support for him.

I also agree with anonymous regarding contacting your local ARC. I haven't worked for them since the 80's but back then we referred to that population as developmentally disabled and they were high,moderate or low functioning. They had wonderful programs back then and certainly they must be even better now.

Your patient is blessed to have a doctor that cares so much about his well being, even though it is taking extra effort on everyone's part.

Domenico Savatta, M.D. said...

This is a great post and will add it to my blog to see what my readers think.

I have to preface my answer with the disclosure that I am a urologist who does 4-6 robotic prostatectomies per week.

I always recommend a second opinion and often have patients ask me to decide for them.

I had one patient who I biopsied who was very similar to yours, but fortunately did not have cancer.

My suggestion to you would be to choose for him what you would do for your dad if it was him.

If you think incontinence would be too much, then radiation has a major advantage. If you feel that anesthesia is best to be avoided, then external beam would be the way to go.

If he is young and needs surgery in your opinion, I would recommend that.

The society frowns upon paternalistic physicians (and probably rightfully so), but this is a good example of paternalism working well.

Good luck.

Shauna said...

I would also think someone from the social work department of your affiliated hospital would have an idea about how to get support for this patient.
Shauna

lindsay said...

I think he needs a guardian, whether it be family or court appointed. He may be functional but doesn't seem capable of making an informed decision. If you made a decision for him and his condition declined, you may have "woodwork" family show up looking to get a piece of the(ir) pie. Seen it happen too many times before.

keagirl said...

Epilogue: The radiation oncologist and I arranged for a social worker to come to all the cancer discussions. After much thought, we decided the best way to treat this particular patient was external beam therapy.

Anonymous said...

As a person who advocates for people with developmental disabilities, I thank you for your kindness, ethics, and belief in the worth of all human beings, regardless of their handicaps, to receive the best quality treatment. We often find physicians who do not see the people we serve to be worth the effort or time. THANK YOU.............

Mehdi Jaidane said...

I just find your blog and really appreciate it. I'm a tunisian urologist (from tunisia) and i just had the same experience with one of my patients. He was similar to yours and i find a gleason 6 cancer on biopsy. I work in a reference urology departement and for prostate cancer we are clearly surgically oriented, prefering almost always radical prostatectomy. For this particular patient i choose for him external beam radiotherapy as i judge that he will not clearly evaluate the risks of the surgery.
Does a paper can be written about this "particular indication" of radiotherapy (besides contre indication for anesthésia) ?

Bill said...

I have just cone across this blog for the first time, and though it is almost 2 months after your original post ("Does not Read"), here is my 2 cents (this, from someone - me - who has been a lisensed practitioner in the health care field for 30 years): Before you start deciding what his best options are, you should be sure that he is competent to understand everything you are explaining to him. If you are at all doubtful of his complete competence, I would have someone from social services get involved to either 1. substantiate that he is legally competent, or 2. have a court appointed guardian assigned as his legal health care power of attorney. I know that may be a bit time consuming, but I would hate to see you become somehow entangled in some legal morass if someone decided to question your decision to make medical decisions for your patient.

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