Like many healthcare organisations, mine has a mantra around putting the patient first, a statement so blindingly obvious that it shouldn’t really need saying, I thought.
Are you person centred? Do you make the patient your first priority and take their preferences into account? I always thought I did. I’m a geriatrician you know. I stop statins and allow aspirin to be axed. Sometimes, I let patients decline tests that guidelines recommend.
I have made some personal progress with difficult scenarios previously. Before I had got to this self congratulatory, enlightened stage, I did find myself in the odd cul de sac. A few years ago, a patient’s daughter summoned me to ask why all their mother’s heart medications had been stopped. The cardiologist had said never to stop to these medications yet we had. The patient was on tablets for heart failure, good tablets to be on for this condition, but tablets that you would usually stop during periods of dehydration or kidney problems. We had sensibly withheld them and I explained the rationale.
What followed was the kind of unsatisfactory conversation that bad arguments follow, when adversaries make speeches, dismiss rebuttals, and each party leaves angry and empty. As I sat down writing my notes to defend myself for the subsequent complaint, I found myself relenting.
Let’s start again.
Apparently I had rolled my eyes. I really didn’t mean to do this, but I can imagine, that perhaps, I did.
Later that year, I met a man at the end of a particularly draining ward round. We had more outliers (patients under our care on other wards) than we did on our ward. A cursory review of the notes revealed that the last patient to review would at least be quick and straightforward and I allowed my thoughts to stray to the nearby coffee shop. Unfortunately this man’s straightforward COPD exacerbation was only there to disguise multiple imagined problems that had hitherto been undocumented in the medical notes. He told me he hadn’t slept for years “How can you send someone home who hasn’t slept for two years?” He told me the oxygen was making him blind. He told me his leg had electric shocks running down it. He told me he couldn’t possibly go home until he was reet.
I probably rolled my eyes and went for a coffee.
I spent a week on call, and a week on holiday. The latter can be restorative to one’s consultation skills.
He’s still here? I said, to my consultant, eyes moving like a Tina Turner cover tune.
This time, I saw him with his concerned son. He was no better. Everything went downhill when he lost his wife. She had gone to a care home. They had been so guilty that she died there, where she said she never wanted to go. His health deteriorated and now he couldn’t sleep, couldn’t really see and had these pains in his legs. I listened, not for an overly long time, and asked, if there was something I could do to help him. He said he would like to try a painkiller for his legs and asked when he could go home.
I must confess that on that second encounter I had also remembered something of John Launer’s series in Postgraduate Medicine. Perhaps I had read it in my week off although I can’t remember. In “How Not to Be A Doctor” he described listening to a patient’s words carefully and treating them in a way counterintuitive to those of used to a conventional medical model. I think all I had done was listen, and this time I had not particular intention to send the patient home. By this time, he had been sitting in hospital for weeks, and I was surprised to hear that he suddenly wanted to go home.
“One day when Pooh Bear had nothing else to do, he thought he would do something, so he went round to Piglet’s house to see what Piglet was doing. It was snowing as he stumped over the white forest track, and he expected to find Piglet warming his toes in front of the fire, but to his surprise he saw that the door was open, and the more he looked inside the more Piglet wasn’t there“
In her seminal paper “Why Study Narrative?” Trisha Greenhalgh uses the example above to explain the idea of narrative with a beginning, a middle, and an anticipation of an ending. There is a narrator, a listener, different viewpoints and the sense of story and drama. If this was a “clerking” on a medical admissions unit, it might read “Pooh Bear went to visit Piglet but he wasn’t there.”
Every one of us has a story to tell, the story of our lives, and how we tell it is interesting. Some of us have assumed certain characters and tell our stories from this perspective, whether it is is the hero, the hopeless romantic, the klutz, the worn out parent, the successful professional. Julian Barnes, in The Sense of an Ending writes:
“How often do we tell our own life story? How often do we adjust, embellish, make sly cuts? And the longer life goes on, the fewer are those around to challenge our account, to remind us that our life is not our life, merely the story we have told about our life. Told to others, but—mainly—to ourselves.”
And from the same book
“History is that certainty produced at the point where the imperfections of memory meet the inadequacies of documentation.”
Stories are how we understand and experience the world around us, and create meaning. Narrative medicine is an attempt to understand illness through stories, within a wider context of family, beliefs and spirituality. It views the medical consultation as a conversation where two equal partners listen to each other, explore connections and differences and come to a shared understanding of a new story.
I haven’t understood this properly yet, and traditional medical training doesn’t encourage us to do so, especially in secondary care. I do some community geriatrics and the approach seemed to fit the kind of comprehensive geriatric assessment in the home visit. Gill Power, a very wise and experienced Advanced Care Practitioner I work with opens consultations of this sort with “Tell me what a typical day looks like to you?” She uses this as an opener to find out how people functioned, who or what was important to them, and delve further into a person’s life assets as well as their def. Really interestingly she could gather quite a lot of information without a lot of interrogation.
I had thought that perhaps this model is better suited to psychiatry, palliative care or primary care, where the issues may be different, the time available to spend with patients greater, and the continuity better, but I can see how at least some of the principles could be incorporated into my work. I have also reflected on how well some of my wife and some of my best friends communicate, and how I often feel better after having spoken to them. They share certain characteristics, of deeply listening, of reflecting what I say in a way that I know that they have really understood, of warmth, of empathy and an ability to have a lightness of humour as well as being able to tackle dark or serious subjects.
I once thought that medical specialty training was there to train me to reach a certain peak of professional practice, that might be further revised over the years, and that further development as a consultant could be achieved by exploring subspecialty work, or developing skills in say medical education or quality improvement.
I have now been a consultant for around 5 years. I recently had to review a case of a patient that I looked after a couple of years ago, and I was struck by how different my notes look like to the ones I take now. I first learnt of the existence of narrative based medicine, maybe 8 or 9 years ago. Of course I can’t really remember when or how exactly – Julian Barnes returns to the idea of imperfect memory and rewriting our own histories in “The Only Story.”
“Memory sorts and sifts according to the demands made on it by the rememberer.”
I have returned to the idea of narrative medicine over the years, reading incrementally more. I think it helps with the idea of putting the patient first that I started this blog with, and using this type of approach may have avoided some of the more confrontational encounters I have had with patients when their understanding of what was going on opposed mine. On a basic level it also helped me further my understanding of history taking. There aren’t just facts to be gathered but also stories to be told and retold, co-constructed between the people talking.
Around the end of my training, and the beginning of my consultant career I began to think about incorporating “What matters to you?” into my daily practice in an attempt to be more patient centred. I use a proforma at work. It captures the components of Comprehensive Geriatric Assessment (systematically addressing things like normal function, bowel function, bladder function, nutrition, mobility, memory etc.) and I like to gather information about occupation and hobbies. Within it I started routinely asking patients “What matters to you?” but found the practice to be superficial and unrewarding.
“To get better” and “to go home” were common responses, and I wondered whether this was just a trendy catchphrase without much behind it. I did occasionally find it useful when discussing resuscitation or ceilings of care. The phrase “if they could see themselves now, what would they say” was one I had picked up somewhere along my training. When asked in the sort of conversation where you found out that someone was a retired headmistress who chopped wood with an axe into their 90s, it was one that could yield quite revealing breakthroughs in treatment strategies.
However, a few months into consultant life I wondered whether I was wasting my time asking this question and admitted as much on twitter. What followed was a kind of breakthrough. I was asking the wrong thing at the wrong time, without context or explanation.
So, from this I gleaned some useful points:
“What Matters To Me?” is a concept not a question. You might find out what matters to people by talking about their lives, like Gill Power does, and inquiring further when they talk about their family or their daily walk.
You can use the principle of what matters to me in many scenarios by asking some more specific questions. I have regularly counselled people who have atrial fibrillation around anticoagulation over the years. I would tell them about their percentage risk of stroke, and how anticoagulation reduces that risk, but increases the risk of bleeding. They would often ask me “What would you do, doctor?” and I would mostly recommend anticoagulation. I can see now that you can do this whole process better by asking if they have heard of atrial fibrillation, or anticoagulation, and if anyone around them has this condition or treatment. I might then ask about their understanding of stroke, glean whether this is something that they are concerned about, what their views and experiences around bleeding are, whether they mind taking tablets, and come to some sort of shared understanding about the relevant benefits and burdens to them.
If you do ask a questions about “What Matters to Me?” then this needs follow up with supplementary inquiry to further understand the answer, as outlined in the twitter conversation above.
It is helpful to understand context. I look after older people with frailty and like to ask about occupation and hobbies, and what sort of person they are “How would other people describe them/you?” The importance of their wider life story, family and beliefs.
Knowledge and understanding comes to us gradually and incrementally, but sometimes in leaps and breakthroughs. The next eureka moment I had was when researching a talk I was writing about advance care planning. I listened to the Curbsiders podcast interviewing Rebecca Sudore on this topic, banged my fists on the steering wheel and listened again to take notes.
I have seen advance care planning take place in very specific scenarios. There may be a patient who clinicians feel has a very poor quality of life, or who is repeatedly using healthcare services, and we set ourselves the task of discussing CPR or readmission with the patient and/or family. Sometimes we might find that the patient or family have been thinking about those issues themselves, or have similar views to what we propose. When they do not, the conversation might look like one of the examples I discussed at the beginning of this blog.
You can hopefully see how a narrative approach may be better. Leaving our own agenda at the door, understanding prior experience, context, the wider family and social structures within which our patient sits and having a conversation to draw these issues out, without presupposing an outcome might lead to a richer discussion.
Without her labelling it as narrative as such, I found that Dr Sudore’s approach has led to much more fruitful conversations than I have had previously. She asks us to consider a few issues (there are more, and I urge you to listen to the podcast, but these are the things that I have found most useful). I have wrapped them within some other things I do.
Ask about who the patient is. We could ask them what a typical day looks like, as Gill Power advises. In geriatric medicine, I often ask about their previous life. What did they do for a living, what did they do for fun. What brings them joy? What type of person are they/were they? How would other people describe them?
Ask about prior experience of illness or scenarios similar to the one you find yourself now. “Has anyone around you been in a similar position?” Have doctors tried to discuss this with you before?
What does a good life look like, going forward? What are you hoping for? This may be around the “to go home, get better” type of conversation discussed previously but may need further exploration e.g. what if this doesn’t happen? Which brings us on to?
What would a bad outcome look like? What would be an unacceptable quality of life to you?
Bring back the context of the issue you are discussing whether that’s discussing future wishes around treatment, or resuscitation, or deciding on the benefits and burdens of a treatment right now.
I have found this approach incredibly useful in my practice and have reached more satisfactory outcomes that I don’t think I would have reached otherwise. I remember meeting a man who was very ill with pneumonia but who, unlike most of my patients was fit and active . He was critically ill and previous decisions on escalation of care had advised that he should be for everything. i.e. considered for resuscitation and intubation. On the face of it, this seemed reasonable, and I can see why doctors had decided this, and also how they perhaps did not want to be ageist, recognising that this man was fit and active.
I had a detailed conversation with him and his family. He was a retired engineer, who enjoyed cycling and gardening and spending time with family. He was indeed physically active and could walk miles. When we discussed values and quality of life, he and his family agreed that he would always want to be physically and mentally active. If he was housebound, and unable to visit his allotment, he would consider this to be a life not worth living. He did not fear death, but did fear suffering, and when I talked through what an intensive care admission or a resuscitation attempt would involve, he did not want either. Indeed, he had already discussed a desire to be “not for resuscitation” with his family but had not spoken to a doctor about this yet. Interestingly we hadn’t asked him, something that I have noted in other cases. When I audited the reasons I make someone “not for resuscitation” the most common reason I do, is because of patient choice. We have got used to discussing CPR status in patients where we think it would not work, but in patients who aren’t ill or otherwise considered fit enough for resuscitation, we shy away from the conversation and leave them “for resuscitation” when we might not actually be respecting their wishes. He decided he wouldn’t want to be for resuscitation, or intensive care. Sadly he died a few days later, but I feel happy that we respected his wishes, that he didn’t have interventions that he didn’t want, and that he and his family were involved in the decisions around that in a way that was personal to him.
I have found other useful breakthrough using this approach. There are other people who are happy with a quality of life that is different to what the man above described. For some people, to be able to sit in a chair, look out the window, and have family visiting them might be the quality of life they are happy with. Sometimes when I ask what an unacceptable quality of life would look like, the patient or family says “As I am/they are now.” I have had people describe wishing to be dead for months when they have had repeated burdens of medical treatments and admissions, because we haven’t asked.
The discussions aren’t just about end of life issues though. It is common for geriatricians to score medications off the chart, using our “scalpel” and where a drug is clearly causing harm. But, for many medications, the line between benefit and risk is hard to draw, and understanding whether someone doesn’t mind taking medications, indeed actually takes the medications that are prescribed, worries about, or has personal experience of the event that we are trying to prevent is as useful as considering issues such as chance of benefit, chance of harm and time to benefit. Adopting a “neutral” approach can help us make a decision that is more individualised, more person centred, and more in keeping with true shared decision making, although we should also recognise when patients simply want us to recommend treatment to them.
Asking who a patient really is allows me to collect wonderful stories. I had a patient who was a tailor and raised her family during her working age life, but when she retired did a PhD in natural history. This sentence of information tells you so much about a person who is now bedbound and unable to communicate in a nursing home. I had a patient who was proud of his appearance in the local newspaper, rescuing strangers from drowning. A husband told me the story of how his wife, when she was younger, had taken revenge on a young man that was harassing her and her friends. These stories enrich understanding of a person, and sometimes lead you to conclusions that you wouldn’t otherwise have reached, a recurring example being a family member who seems to be advocating a particular treatment strategy, but after discussion of values and life story, agreeing that this wouldn’t be what the patient would have wanted.
I have found that it can be relatively easy to teach others the approach outlined above, and have delegated discussion of the values to medical students who often have more time, and had some really rich conversations.
Of course, it doesn’t work for everybody, and I have had, for example, a family member asking me “why are you asking me these questions?” when the outcome for the decision was already clear, and I retreated. There are others who aren’t ready to have such discussions, and a different approach may be required. Of course, even in life or death situations some people don’t want to talk about what’s going on (I would then ask if I can speak to someone close to them, or whether they wish for the medical team to make decisions on their behalf). This isn’t a one size fits all approach, merely an approach that I’ve found useful for a lot of patients.
A really important feature of these discussions is the narrative approach of leaving your own agenda at the door. I have a personal dislike of resuscitation discussions where people talk dramatically, in hushed tones, of broken ribs, or being disabled. These are reasonable issues to consider, but we need to remain neutral and avoid value judgements. For some people, broken ribs is a perfectly reasonable risk to take for the price of success, and for others being disabled is a valid and acceptable outcome. It is not my role to decide on what type of life is a life worth living. Where however treatment of any sort is unlikely to work such that it meets a threshold of futility than this, I think this needs to be communicated, and second opinions sought, where there is uncertainty.
This is the end of this blog, but it isn’t the end of my understanding. I am still reading books on narrative medicine. I’d lvoe to hear from you. I’d love to go on a course one day. I am no expert in advance care planning. The nature of my work in hospital means that a lot of my work is done at pace, with patients who don’t have the capacity to discuss issues in detail, where there are multiple handoffs, and where discussing this approach needs education and explanation. I tend to slip back into old habits, and periodically I get things wrong, in a new and unchartered way.
I am, increasingly convinced however, that there are good, and better ways to do things, and that doing the right things, leads to good outcomes. We know, for example that comprehensive geriatric assessment reduces your risk of dying or being instuitionalised. We must all want to involve patients and relatives/caregivers in their own care. Instead of selecting out a small group of patients and hoping that a discussion will lead to the healthcare systems agenda of reducing resource consumption, maybe broadly having a narrative, patient centred approach where we really ask people “What Matters to You?” will yield richer conversations, and more satisfactory outcomes with the happy side effect of allowing some people not to have tests and treatments that the system subjects them to.
I remember the advances in my understanding that I made when I discussed some of these topics with minimal understanding on twitter previously and I’d love to hear from those with greater experience and expertise of how to tackle the issues I’ve discussed above.