“Do I really need a mastectomy?”

Thank goodness for 15 minute consultations. I knew my next patient, Pam, to be direct, articulate and easy to talk with and anticipated a straightforward encounter. However, checking her record, I realised things might be trickier this time.  Recent routine screening mammography had shown calcification, a biopsy had revealed low grade DCIS (Ductal Carcinoma in Situ). The clinic letter outlined the plan; mastectomy, then radiotherapy and 5 years tamoxifen.

I could see was worried; “Have you read the clinic letter? I am supposed to have a mastectomy next week”. She had been up all night googling breast cancer and DCIS. Various links had led her to concepts that DCIS is probably not actually a cancer, although thought to progress to cancer in some women. More information had led to more uncertainty and doubt. Hence her question

“Do I really need a mastectomy?”

In my own mind, I was not sure what to say at first. Sure, as a generalist my job is to care for the whole person while a partialist (in this case the breast surgeon) brings their own focussed expertise in the service of the patients health. If you are holding a hammer everything looks like a nail and of course surgeons are predisposed to consider the surgical options.

However, I know that the DCIS story is complex, constantly evolving and even controversial. DCIS is regarded as a precursor to breast cancer by many and usually referred to in this way in patients literature, such as cancer support websites. However,increasing the diagnosis of DCIS has not resulted in fewer late stage cancer diagnoses nor made much impact on breast cancer mortality rates, Women seem to live longer after mammographic diagnosis, but that is a survival rate…and mainly an effect of lead time bias. This happens if a disease is picked up early, before its usual clinical presentation. Then even if the person dies at the same age as they would have done without clinical detection, they appear to have lived longer after the diagnosis. Total life expectancy does not change in this scenario (and really that is what matters to most people).

Some consider that the term DCIS should become instead a type of IDLE (Indolent Lesions of Epithelial origin) to make clear that the progression to breast cancer is poorly understood and not at all inevitable. It would appear that we are now finding more indolent intra-duct lesions, that were simply invisible before modern techniques of investigation.

I could have taken the easy route and said “consult the breast specialist, they will give you the best advice”. However, I perceived that Pam was asking for something else entirely; she needed help in making her own judgement about the proposed treatment plan. This was a WDYDWYDKWTD moment for us both!

Using the Mapping Uncertainty in Medicine framework, the first question is do we know the diagnosis, and secondly is it just one doctor and patient or is there a group team or network involved? Although the surgeon is involved, at this point it was just the patient and myself discussing the issues. In that context, there was a WDYDWYDKWTD moment in the NEGOTIATING quadrant.

There are two things to think about here; what skills will help me, to help Pam, make a decision about her care? Secondly, what kind of doctor is Pam needing at this point?

To make a decision effectively we need to use Shared Decision Making skills, a formal set of learnable skills (just as breaking bad news is a learnable skill).  Linda and Ezekiel Emanuel (see Reference 1) have provided a useful typology of doctors and that helped me decide what kind of doctoring might be helpful.

I could have opted for a paternalist approach ie “doctor knows best”. This can be vital in a fast moving, complicated situation. For example, a patient with multiple injuries will probably be grateful for a competent doctor who makes the right decisions, with explanations rather than shared decisions; the situation is life threatening and the doctors expertise is paramount. This was not the case in my consultation with Pam.

The informant doctor, in contrast, would give the patient all the information and let them make an “informed choice”. Pam had lots of information, from the surgeon and from Dr Google…and yet she was not really any closer to making a decision she felt comfortable with. She was informed, but could not make a suitable choice.

Going beyond informed choice needed an interpretative doctor, who shares information with the patient, also guiding the decision making, using expert knowledge, while incorporating the patient’s values and priorities. This approach is usually called “Shared Decision Making” and seemed most appropriate here.

However, a deliberative clinician may go even further than the interpretative clinician by helping the patient to explore and examine the health related values “that can be realised in the clinical situation”, and which of those values are “more worthy and should be aspired to”. In this situation the clinician is acting more like a teacher or friend; engaging in a dialogue about what values are most important to the patient at the time, and even indicating what decision about medical care would be “admirable”.

How did Shared decision making skills (SDM) enable Pam to make a decision? There are several components to SDM; it begins with building an effective doctor patient relationship and understanding where the patient is coming from. So we talked about how Pam felt about screening and her diagnosis, what her personal aims for life were and how she viewed the effects of invasive treatments, mutilating surgery such as mastectomy, DXT and long term therapy. I asked about other aspects of Pam’s life; her family, relationships, work commitments, aspirations and plans. Genuine interest and respect for patients own experiences as unique individuals, builds trust and builds a strong rapport; this allows even difficult matters to be discussed openly.

The next three phases of SDM are Team talk, Option talk and Decision talk.

Initially, Team Talk clarifies that there is a decision to made, the extent to which the patient wants to be involved in that decision, and emphasises that decision making will be a team process with the doctor and patient working together. Thus, expert input and honouring the patient’s own views are combined (Reference 2). Pam did not passively accept the surgeon’s conclusions; she wanted to be involved.

We then moved to Option Talk; identifying and discussing the various options. These could include watching and waiting, getting more information about options from the surgeon, (for example, considering local excision rather than mastectomy), deciding whether tamoxifen was a suitable long term treatment etc.

Finally, moving to Decision Talk meant helping Pam to explore and make a decision based on her personal preferences.

In the end, the key outcome was not a final decision but rather a change in approach. Firstly, Pam realised that the decision about mastectomy was neither inevitable nor urgent; DCIS is not an emergency nor a clear cut cancer. This gave her confidence to take some breathing space, to think things over, to discuss with trusted friends and family, to see how the proposed actions fitted in with her own life. What was she really hoping for? Certain cure? (even mastectomy cannot offer that as DCIS is a marker for increased risk of breast cancer), fewer trips to hospital in the longer term? avoiding surgery? Pam also began to see her GP as a longer term ally through illness, a guide to the options and even as a go between. We discussed how writing to her surgeon or a further discussion with them, might clarify the range of potential treatments. We arranged to meet again, after time for reflection.

Some decisions do not fit into tidy algorithms; being comfortable with the messy uncertainty of life and helping patients to also understand and accept the uncertainty inherent in things, is one of the joys of being a generalist. When the science is changing and evolving faster than clinical practice it can be especially hard to share those uncertainties with patients, especially when evolution of thinking seems to suggest stopping doing things (like not doing back X-Rays for musculoskeletal pains, or mastectomy for DCIS). Taking a wide view, stepping away from paternalist or informant positions and work things out alongside the patient will enable both doctor and patient to bring what they know best to the consultation.

So longer 15 minute appointment was welcome. I went home still pondering the complexities of her choice.

 

Reference 1

Emanuel J Emanuel L 1992 Four Models of the Physician-Patient relationship JAMA 1992 267 no 16 p 2221-6

Reference 2

Elwyn G et al Shared Decision Making and Motivational Interviewing: Achieving Patient-Centered Care Across the Spectrum of Health Care Problems. Ann Fam Med. 2014 May; 12(3): 270–275.

 

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