Values and attitudes to uncertainty

“Do I really need a mastectomy?”

~ Avril Danczak ~ Leave a comment

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.

 

“Are we letting her starve to death then?”

~ Avril Danczak ~ Leave a comment

A carer in a nursing home asked this question on seeing Mrs J, an 82 year old lady with Alzheimer’s disease, push away food and clamp her mouth shut when offered a drink. Mrs J had been deteriorating for many months. Thin, bed bound, incontinent, unable to speak except to grimace or occasionally shriek, she needed help with all activities of life, able to do nothing for herself. Her appetite, never huge, had gone entirely. Now she was refusing everything, pushing carers away when trying to feed her, turning her head away when drinks were brought to her mouth. The staff were having a “What Do You Do When You Don’t Know What To Do” moment, looking to me for an answer; I felt I was having a WDYDWYDKWTD moment of my own.

Effective Palliative care can be tricky; knowing when palliation turns into end of life care, even harder. Could a structured approach to uncertainty help me here?

Mrs J’s care involved both diagnosis and management issues. The types of uncertainty here were ANALYSING (what were the diagnoses?) and TEAM-WORKING (arranging the right care with a group team or family) because Joan lacked capacity to plan or negotiate care herself, except perhaps, by refusing sustenance.

Using ANALYZING skills from the Map of Uncertainty in Medicine I first hypothesised and then ruled out intercurrent illness. Apart from the feeding issues nothing else had changed, examination was unremarkable. Although a little dehydrated she did not appear to have an infection, or be in pain, or have any mouth issues. Her dementia had been relentlessly progressive, with less of her old self apparent every week. Even offering her favourite foods did not help. Thus, I was able to rule in a diagnosis; this was a development of her disease, a sign that we were reaching the end stage of dementia, when even food is no longer recognised.

Then I turned to the TEAM-WORKING quadrant. This was not just about me and Mrs J.  Decisions involved her carers and nurses, and her two sons, who lived nearby. There are different ways to plan care. Pathways are for straightforward and slow moving conditions (a hernia repair in a fit 40 year old). Algorithms help when things move fast but are single conditions (childbirth), whereas pattern recognition helps more when things are fast moving and complex ( ITU, major trauma). This was a slower moving, complex situation which is also strongly preference sensitive, meaning care needs to be individualised to the person. Scenario planning is what’s needed here.

Fortunately, when Mrs J was admitted we had met with her family to do just that, and staff had regular updates with her sons as things deteriorated, creating an Advance Care Plan (1). Although saddened, they recognised that Alzheimer’s was taking their mother inexorably away from them. They wanted Mrs J to stay in situ; her last hospital admission had made her fearful, distressed and isolated on a busy ward. They also wanted to “Allow a Natural Death” (AND), a kinder and more accurate phrase than “Do Not attempt Resuscitation”. We had anticipated various scenarios including this one; how eventually the dementia could even result in her failing to recognise food and drink.

We called them once more, sharing the perception that Joan was approaching the end of her life; they were relieved to have this in the open having thought as much themselves. She was nursed tenderly in her own bed with her familiar carers and her sons visiting often. She slipped into a coma and died peacefully a few days later.

And no, we didn’t let her “starve to death”. She died from her Alzheimer’s disease. Emaciated patients with cancer do not starve to death, but die from their disease too.  Working with the whole team, recognising her family as a crucial part of that team, meant that, for Mrs J, the uncertainty generated by the pursed lips and refusal of drinks, resulted in careful planning and a peaceful death.

Her sons sent the staff a big bunch of flowers and thanked them for their care.

 

Mapping Uncertainty in Medicine

~ Avril Danczak ~ Leave a comment

The practice of medicine gets more complicated every year,and it feels like everyone expects clinicians to “know what to do”and have all the answers. So what happens if a clinician is not sure what to do next? We call this the “What do you do when you don’t know what to do” moment or WDYDWYDKWTD for short.

Marshal  Marinker famously commented that the role of the Primary Care physician (or family physician) is “to tolerate uncertainty, explore probability and marginalise danger, whereas hospital specialists have to reduce uncertainty, explore possibility and marginalise error”(1) . Yet for most clinicians “tolerating uncertainty” is extremely uncomfortable. It makes us ask ourselves “am I about to make a terrible error?” or wonder if we are going to be criticised or sued. The result is that most clinicians try to minimise uncertainty because it feels so uncomfortable.

And yet, uncertainty does not go away and we all face uncertain situations everyday. Simply tolerating this does not feel like a satisfactory way forwards. But help is at hand from our book “Mapping Uncertainty in Medicine”. In the book we  explore ways to understand uncertainty in clinical practice,  to classify it into different types, and to identify which skills can be used to manage uncertainty in different types of situations, using a process called Mapping Uncertainty in Medicine or MUM for short. Its always good to have your MUM with you in a tricky situation!

(1) Marinker M and Peckham PJ (eds). Clinical Futures London: BMJ Books, 1998