I would love to get nursing feedback on a particular case: how to approach a situation where a woman presents for screening (in this scenario, cervical cancer), is eventually diagnosed with cervical cancer and then declines all treatment. My initial thought is, of course everyone has the personal right to opt in or out of any treatment. But my concern is, how much of her decision has to do with a very low health literacy and what is our role in informing and advocacy? After the patient makes her decision, what is an appropriate amount of patient contact to have to insure she understands the risks and benefits of her choice?

For those of you in or around Boston, there will be a conference on Ethics and Health sponsored by the Harvard Global Health Institute (not on this patient case). The conference will take place on Thursday and Friday, April 19-20th. Conference agenda can be found at http://isites.harvard.edu/fs/docs/icb.topic202675.files/Ethics_Conference_Age.... And registration can be completed at http://fs6.formsite.com/harvardhigh/form69/index.html.

 
Inge Corless
Replied at 7:36 AM, 29 Mar 2012

This is a difficult case. Was the patient informed about the various options before she declined treatment? Did anyone query why, although she has every right to decline treatment, she did so. Did she have concerns about her family? Can anyone follow up to ask her how she is doing and to assure her that she can return whenever she wants even without agreeing to treatment. I guess I would check into her other concerns and whether she knew of someone with a similar diagnosis with a bad outcome. Also is there any family history? There's so much you don't know (at least, I don't know about her). The best idea may be to do a follow-up to see how she is doing and then check in periodically. Is there anyone on the team she trusts? That person should make the contacts. Keep us informed re the outcome.

Maggie Sullivan
Replied at 12:12 PM, 6 Apr 2012

Hi Inge,
Thank you for your thoughtful questions. Those are some helpful suggestions. I think also, we may not have sufficiently explained the purpose and reasons behind the idea of screening. For example, if someone knows ahead of time that they would absolutely not consent to cancer treatment, it is ok to decline the screening. However, in a place where resources are so limited, peoples' natural response to a free resource (whatever it may be), is to accept it without much question. Informed consent is challenging also due to limited formal education.

My feeling is that this particular patient has well-founded fear of treatment with chemo/radiation. I believe she is currently pursuing some type of natural therapy (I don't know what all this entails). But I do agree with you, having her continue to periodically discuss options with someone she trusts would be helpful. It just gives me pause regarding conducting wide-spread population-based screening programs.

Maggie Sullivan
Replied at 12:34 PM, 11 Apr 2012

Marie, thank you so much for your comments. I wanted to share these four questions online with our members. For my part, I think they're immensely helpful to keep in the forefront of my mind when interacting with the patient mentioned above. The questions are from Dr. Susan Block at Dana Farber Institute and cited in the Prepared Patient blog: http://blog.preparedpatientforum.org/blog/2012/04/guest-blog-four-perfect-que...

Do you understand your prognosis?
What are your fears about what is to come?
What are your goals as time runs out?
What trade offs are you willing to make?

I think these questions are as relevant to patients in the US as they are for our patients in low-resource settings.

-Maggie

Inge Corless
Replied at 3:33 PM, 12 Apr 2012

While I think these are valuable questions, it seems to me we need to find out what the patient thinks she has been told- something along the lines of "I'd like to understand what the doctor told you". Once you receieve a response, you can gently probe. I worry that if you ask the question about prognosis as stated- not that Marie would- it would place the patient on the defensive. I'd want to know more along the line, as has been suggested, their previous experience or what they've heard about treatment. I think we need to be gentle in how we approach these issues as it clearly is a sensitive subject for the patient. I'd also want to say that such news is hard to hear and there are no easy decisions (unless there are). If there's a cure, that should be stated. But much in oncology is gaining time and the question is the quality of that time. Nurses need to hear what the patient values and then go from there to be supportive.

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