In an increasingly challenging work environment where time constraints, increasing demand and even political unrest can be an unwelcome distraction to the care that our patients deserve, it is easy to forget some crucial aspects of patient contact.
I have been unfortunate enough to experience two major traumatic events in my life. One working as a registrar in an emergency department during a major earthquake, and the other a life-threatening illness. Both experiences taught me a great deal about communication. However, it is the latter that I would like to use as a reminder of the consequences of even small periods of patient contact, the lasting impression that they can have, and the importance of good communication.
I wouldn't say that my body's ever really been a temple (despite heartfelt, sporadic efforts), but it certainly feels decidedly more like a shed now. Ten years ago, at the age of 26 and four months into my FY2 year I was diagnosed with ulcerative colitis. Within a few weeks and during my first admission to hospital the diagnosis changed to severe, fulminating ulcerative colitis with toxic mega-colon. And so, my journey began.
Four months and a temporary ileostomy, four trips to theatre, time on the HDU and ICU, a few central lines and nasogastric tubes, a urinary catheter, two failed epidurals, severe sepsis, a permanent ileostomy, a right-sided foot drop, pneumonia, an osteopenic fracture, alopecia, a year of open wounds and a 20kg weight loss later (and this is not an exhaustive list), I had learned a great deal about life on the receiving end, and the importance of communication.
The overwhelming realisation was that despite being highly qualified, intelligent and driven professionals, we often forget the simple things. The fact that I am here and able to write this is testament to the good care that I received. However, the truth is that it's the difficult, painful moments and words that are the ones that I and, I suspect, other patients remember forever, and which have a lasting effect on us.
The quest for hope
Whilst on the HDU one gloomy day and seeking desperate reassurance, I asked a nurse, 'I'll be okay, won't I?' The response was, 'You know I can't make promises that I can't keep'. The implication of those words had a profound effect on me. Choosing how we phrase things, in a way that encourages positive thoughts from the patient, without 'lying' or providing false hope can be crucial.
Patients need hope. Have you ever noticed how a patient's health can deteriorate dramatically when a serious and potentially life-threatening illness is confirmed? I suspect that most people already know deep down that something serious is wrong. However, until this is confirmed by one of us, in their minds there is still hope that everything will be okay. We may perceive this as denial or avoidance through medical eyes, but through human eyes this is an expression of hope.
Hope is a journey. In my case, there was hope for survival, for discharge, that I would walk unaided again, that wounds would heal, that the psychological impact of this time wouldn't catch up with me one day and be the start of another difficult journey.
Patients respect honesty from their doctors. Where there is no hope we owe it to them to tell them so, tactfully and gently. But whilst there is light, however dim, at the end of the tunnel, we must reassure our patients and their relatives of this and allow them to hope, whilst we manage the reality.
We should remember that what is a brief encounter and passing conversation for us may be a significant and memorable event for the patient.
The inappropriate timing
Time for doctors is a precious commodity, and that spent with patients is too often limited through necessity. Despite this, however short our contact, we should remember that a patient's dignity is paramount.
Whilst having my bed bath on the HDU one day, a surgical registrar (whom I barely knew) attended unannounced and decided it was an appropriate time to discuss the cons of having a reversal of my ileostomy with regards to conceiving a child in the future. The nurses who had me stripped to the waist were as astounded as I was about the nature and content of the brief encounter. I was 26, single, bed-bound, full of holes and focusing all the energy that I had left on surviving rather than meeting the man of my dreams and starting a family.
We should remember that what is a brief encounter and passing conversation for us may be a significant and memorable event for the patient. I have no doubt that the impact of positive conversations played an important role in getting me through that difficult time, but years down the line the conversations that I remember most acutely are the difficult and negative ones.
The dismissal of concern
During my recovery on the HDU I noticed that something was amiss (again). My second failed epidural was causing a worsening paralysis of my right leg, with little effect on my abdomen. I raised my concerns with doctors and nurses, which were dismissed for many hours. With increasing abdominal pain a friend and colleague arranged a surgical review. Unfortunately, by this time it was too late to save my last bit of colon and away it went along with any possibility of a reversal of my ileostomy. Looking back, I feel disappointed that the complication had been missed, but most of all that my concerns once raised were not taken seriously.
A patient's concerns should never be dismissed without reasonable assessment, and subsequent investigation or reassurance should be communicated effectively. This also extends to our allied professionals and to patient's relatives, who are so often their voice and advocate.
The difficulty of the doctor-patient (who also happens to be a doctor) relationship
I'm sure that most of us at some point have cared for a fellow colleague, and those of us who have will be conscious of the uneasy responsibility and sense of 'special etiquette' involved. As someone with insight from both perspectives and having spoken to other 'doctor patients', the one thing that I can say with some certainty is that we often don't want to be too involved with the 'big' decisions regarding our care.
When faced with the failed intravenous therapies for my condition, a surgical opinion was sought. The consultant gave me the option of surgery with all its risks and benefits. I was given the weekend to consider my options. On Monday morning, he came into my room to find me on the floor in significant pain. Thankfully at this point the decision was an easy one. The weekend for me however had been long and challenging, both physically and emotionally. I did my best to way up the options, considering myself and my family. The weight of the decision became almost too much to bear.
Who should make the difficult decisions?
When doctors asked me, 'What do you want?', the answer was simple; 'I want to get better, and I want you to take responsibility for the decisions that will help achieve that'. I could do my part in following their advice and staying positive, but the burden of serious illness, or even just being a patient, is quite enough for some.
Please don't lay the responsibility of decision-making entirely on your patients' shoulders, especially just because they are doctors. Those who want to be involved with every decision regarding their care will make this known to us at a very early stage. For the rest, including doctors, let us ease that burden. Certainly, we should involve our patients whenever possible and appropriate, but let's remember that we are there to make the tough calls.
Give a little time, show a little compassion
Despite the 21st century technologies and cutting edge treatments that we as doctors rely upon to do our jobs properly, what our patients appreciate most is a little of our time. Psychological well-being and a positive attitude are vital for our patients' recovery.
When the consultant surgeon responsible for my care took the time in between cases to pull up a chair at my bedside, put his hand on my arm and ask, 'How are you, Nia?', I knew that he really cared. He had seen me on his morning rounds, but demanding schedules rarely allow for such interactions at this busy time of day.
The conversation was not a long one, but this didn't matter. For those five minutes I was his patient, Nia, and not just a disease or bed number. I realised that despite only seeing him for five minutes during his busy day I, as did many of his other patients, probably crossed his mind often during conversations and decisions that I was (thankfully) not party to.
Illness is a burden. It has an impact on physical AND emotional wellbeing. It often has financial implications for the patient and their family, which brings its own anxieties. Patients may have loved ones that they rely on, and some that rely on them. We need not know the specific details for each patient, but we should remember that there is a bigger picture. Letting our patients know that we understand this goes a long way in establishing trust and developing a productive and mutually respectful relationship.
My own experiences have undoubtedly changed my approach to patient care. I have learned that empathy, and even just giving a few extra minutes of my time, enables me to develop a very important connection. As my time is spent working in acute and critical care a few minutes may be all that I have, but I make them count. As doctors, we strive to improve our clinical acumen and skill, but relationships and communication are also worthy of our time.
Let's remember that even small encounters in our day may be big events in our patients' lives. We should consider carefully how, when and where we seek or deliver information. Most importantly it is imperative that we listen to our patients, and listen to their family's concerns. When we listen, we may hear that one crucial bit of information that could change our management - and their lives - for the better.