General perspectives

How come breaking “good” news is so hard?

~ Avril Danczak ~ Leave a comment

In one of Liam Farrell’s typically hilarious blogs, he relates the painful task of explaining that an elderly relative, instead of dying as expected, has perked up and is enjoying the company of her extended family who have flown in from their far flung lives across the world …expecting a death. (https://drliamfarrell.wordpress.com/2017/05/09/breaking-good-news-in-a-bad-way/). The family are not best pleased that their well laid life plans had been interrupted by the false expectation of grannies death. After all they all had other things going on!

This got me thinking about why and how breaking good news and be just as hard as breaking bad news and sometimes gets us into clinical WDYDWYDKWTD moments.

Bad news means something that changes your view of the future for the worse; we easily recognise how a cancer diagnosis an abnormal smear or even an allergy could do that, But good news? Surely everyone is keen on that? As Dr Farrell discovered it all depends on the context and the way you tell it.

Doctors often keep their clinical reasoning thoughts to themselves; this can result in seriously crossed lines of communication with the patient. The doctor does a blood test to rule out anaemia and is relieved when the tests is normal. The patient hopes that the test will rule something in and is disappointed when the result is normal, perhaps saying, “so you still do not know what is wrong with me?” The clinicians good news is the patient’s bad news.

This conversation can put the clinician on the back foot making them feel uncertain about what to do next; jumping to a dysfunctional way out of uncertainty can lead to a reflex referral for “a few more tests”. Before long, a cascade of normal investigations follows, having the paradoxical effect of good news leading to increasing rather than decreasing anxiety in both clinician and patient. The search for a test result or radiological image that will define the problem can be a fruitless one, as many conditions in General Practice will inevitably remain poorly defined, purely symptomatic, or be at such an early stage that tests can be normal.

If testing creates an expectation that a diagnosis is there somewhere “waiting to be found” the patient will be harmed because investigation takes the place of treatment and care. Moreover, repeated testing in such a context is in effect evidence free screening, or fishing, for poorly defined purposes. The more tests done, the more likely one will be slightly abnormal; resolving this can lead to further tests or investigations accompanied by increasing anxiety and delays to active symptomatic treatments. However, the dysfunctional way out of an uncertain situation by doing more tests can be avoided if the need for breaking good news is anticipated and planned for.

The skills of “Breaking Good News” are like the skills of “Breaking Bad News”; the application of generalist listening and consultation skills to the particular task of explaining and planning care. Before any tests or investigations are done the doctor needs to be clear about their purpose; rule in or rule out? (something common serious or treatable usually). It is best to avoid the dysfunctional testing whose purpose is “get this patient out of here”. The potential for normal results should be explained to the patient before tests are done, and the possible subsequent actions should be on the table at the beginning.

For example, in a patient with mild fatigue, normal examination and no red flags it could go like this;

“  Well, the good news is that your story and physical examination are reassuring , so in the first place we can hope that things will improve with time and if you get more regular sleep, a daily walk and avoid alcohol. Come back in a month if things not settling down”

( see http://www.racgp.org.au/afp/2014/july/fatigue/ and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2662125)

It is all in the framing; not “I don’t know what is wrong”, rather “it’s good you seem to be healthy currently… let’s concentrate on what we might help”. In the longer run, positivity, combined with robust safety netting, is less likely to result in disillusionment.

In summary, when Breaking GOOD news…plan ahead, signal that good news is coming, empathise with the impact that the news is having, use positive language like “ healthy, normal” or “great for your age” and interpret any findings in the light of the patients own concerns. These approaches will naturally lead into plans that relate to the patient’s own specific needs. Always aim for a dialogue, so that your conversation develops guided by your expertise applied to the patients concerns. So, something to try in a consultation…BGN (Breaking Bad news) and sharing uncertainty with patients in a useful way. Perhaps these ideas might make it on to a Personal Development Plan near you!

Could this approach would have helped poor Dr Farrell?

 

 

“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.

 

“Is this a pain in her jaw or a pain in my neck?”

~ Avril Danczak ~ Leave a comment

In textbooks, guidelines and letters from specialists to generalists, life can seem clear cut. Symptoms, signs and tests all mesh together; a diagnosis appears. Everyone is relieved, except the poor patient who must wrestle with the consequences.

In Primary Care, it is not like that; patients may come with some, any, none or all of the symptoms of not just one, but several conditions. The ANALYSING quadrant of the Map of Uncertainty in medicine can help here. This addresses the WDYDWYDKWTD moments that arise when one doctor and patient are working together and they still don’t have a working diagnosis.

Agnes is a 36 year old kick boxer. She often competes and accepts the bumps and bruises that follow. She ignored an achy pain in her left jaw for a few days, putting it down to a fall in a bout she lost. It didn’t get better, she started to feel unwell, with a slightly sore throat. A friend noticed a swelling in Agnes’ neck and recommended a visit to the GP.

This unusual set of symptoms may give the clinician a WDYDWYDKWTD moment! Is her jaw broken? Is the swelling an abscess, a haematoma, the start of a lymphoma? Why does Agnes feel vaguely ill? It is tempting to take rapid “dysfunctional ways out” here.  As she is not that unwell, reassurance that all will settle with time may seem appropriate.  An X-ray in the A and E department to rule out a fracture uses referral as a quick way out. When the X-ray is normal she will go home none the wiser about her problem. Avoiding a diagnosis and saying vaguely, “it’s probably a virus”, or giving an antibiotic “just in case” are other “dysfunctional ways out”.

Better to use the skills of accurate hypothesis generation, thinking rationally about the differences between ruling things in or ruling them out. Marshall Marinker famously characterised the work of the generalist as being to “marginalise danger, explore probability and tolerate or manage uncertainty” (reference 1)

Could the worst case scenarios here be ruled out?  The trauma cannot be discounted; is there a head injury, jaw fracture? Could the swelling be something serious, an early lymphoma perhaps?

As for probabilities, a fracture was not that likely; although stoical, Agnes would probably have sought help immediately if she had pain on eating, with swelling or bruising over the jaw. The neck swelling may indicate inflammation; is there a local infection? Or are there, as yet unnoticed, swellings elsewhere, in the axillae, groin or liver?

Clinical reasoning can help in deciding where to go next Doctors are keen to rule things OUT, because it reduces worry about serious issues, if they can be reasonably ruled out. Patients are naturally keener for answers and would like to know what has been ruled IN. Examination helped here.

Agnes was fully functioning and alert and had had no period of unconsciousness or head trauma. With no bruising or localised tenderness over the jawbone it was reasonable to “rule out” trauma as the cause for her current problems.

The neck swelling felt like a reactive lymph node and the absence of other enlarged glands, spleen or liver, made a lymphoma less likely. This left some inflammatory possibilities. Careful examination of Agnes’ face revealed a few subtle pinky red spots, all on the same side of the cheek, her skin being otherwise healthy. The ears and throat appeared normal and Agnes repeated that she was not her usual fit and active self.

Could anything be ruled IN? The spots were nonspecific. Pinkish, small and perhaps a bit tender. Was the gland in the neck reacting to an infection there and if so what kind?  The malaise and sore throat could indicate some kind of mild viral process, but that would not explain the spots nor the unilateral lymph nodes. Perhaps the pain was early shingles.

So in the WDYDWYDKWTD moment, what could the clinician do next? When things are not clear cut, follow up and reassessment are powerful diagnostic tools for managing uncertainty proactively. When handled correctly, this can build a strong doctor patient relationship and therapeutic alliance.

When these thinking processes were articulated explicitly with Agnes, she was happy to accept some pain relief and an early telephone review. 36 hours later her face was looking awful, “as you said doctor, things might change quickly”. When she returned, the diagnosis became obvious; there was a patch of shingles across her cheek.

Using explicit reasoning skills and timely reassessment, unnecessary X-rays, antibiotics and an Accident and Emergency attendance were avoided. Uncertainty is an important sign in clinical practice; holding uncertainty and working through it methodically can yield effective results.

  • Marinker M. Medical Audit and General Practice. London 1990

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