Working with people ‘too young’ to have bowel cancer, and the benefits of empathetic care- a patient’s perspective

Walking in a patient’s shoes, from the nurse’s perspective has been a hugely humbling and enlightening experience. Before I became a patient with my recent bowel cancer diagnosis, I would have described myself as an ‘empathetic caregiver’. Over the years I have had plenty of experience working in some of London’s busiest trauma centres. I have cared for many families and their loved one who is not expected to survive the night. Multiple cups of tea have been had with retirees who are processing their terminal diagnosis, and like many nurses I have supported an array of patients after they have been delivered ‘bad news’ of all varieties.

When I reflect on the last 7 months I can see that I have gained more insight and admiration for the art of caring . More than I have learned during 18 or so years of nursing, and several post graduate qualifications. While I wouldn’t want another ‘training program’ like this, I am incredibly grateful for the new clarity and compassion that I have developed through my own patient experience. The two primary messages that I want to share today are 1) a bowel cancer patient is not “too young” for the condition, and 2) the benefits of empathetic care.

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It’s 11 am on the day before my bowel cancer surgery and I am waiting in the hospital foyer to be admitted to the ward. The wardsperson calls out my name. I look up and I think to myself that he must have the wrong person. He’s pushing a wheelchair. I consider in my current able state- ‘I’m guessing they don’t usually see people my age coming in for this type of surgery’.

By 3pm, I’m visited by the third health professional who comments to me that I am “very young” or “too young” to have bowel cancer, and the “younger ones” having this procedure usually have a type of inflammatory bowel disease. The inference was that it is rare for people of my age to have bowel cancer. By now I had developed the retort- “I’m just special, I guess”.

My husband is sitting with me, watching and listening. I can see from his facial expressions and body language that he is starting to become increasingly worried about me just getting through the surgery, not to mention my prognosis. He asks me if I know “what level” (how experienced) some of the staff are, who keep telling me that I am too young to have this disease. I hadn’t even started my bowel preparation by this stage! This is a timely reminder that the patient in the bed, procedure room or doctor’s office – isn’t the only person that needs to be considered, it is also the patient’s immediate support team. I count at least 5 health professionals over the next 24 hours who give me the -wow you’re young ‘look’, compassionate sigh or comment.

Too young to have bowel cancer?

In general care interactions, is there any benefit of a professional pointing out to a patient that (in their mind) they are too young to have a condition? Of course if a patient asks about the clinician’s experience of treating a case similar to theirs, then that is a different scenario. I have to admit that before I was diagnosed with bowel cancer, I didn’t know a lot about the statistics – the likelihood of someone my age developing bowel cancer, or the prognosis/death rate for my type of cancer.

Now I have been able to research the bowel cancer facts a little more and I have spoken to many other women of a similar age to me (and younger). Today I can see that from a patient’s perspective, being referred to as ‘too young’ is…. well……. unhelpful and incorrect.

Many women that I have heard from between the ages of 20 and 40 years, have repeatedly shared common themes – “my health professionals tell me that I am too young to have bowel cancer”. This can create further distress for a patient. Some patients are told that they are too young at their diagnosis, some during their hospital stay, others during their chemotherapy or radiation therapy and others well into their rehabilitation. My husband clearly articulates his frustration and says “well they are just wrong because you are here with bowel cancer, at your age”.

The connotation of  too young or a rare case, also means that there is more chance of a missed diagnosis. Sadly many younger women with advanced bowel cancer reflect on their diagnosis as being delayed because their doctor initially discounted the possibility of cancer due to their age. I have heard from a number women who were incorrectly diagnosed with food intolerances, kidney stones, and ‘women’s problems’ (just to name a few) – even with obvious bowel cancer symptoms.

I was extremely lucky to have a general practitioner who recognised the potential early symptoms of bowel cancer and organised the appropriate tests during my first appointment. A delayed diagnosis will often impact on treatment, health care outcomes and prognosis. How many lives could be saved (not to mention the improvements in quality of life), with an earlier bowel cancer diagnosis? Remember – an early diagnosis is also reliant on a patient seeking medical advice early. I wrote about being attuned to your body and seeking early medical attention in my first blog Listen when your body whispers before it yells at you.

Australian Bowel Cancer Facts

  • 1 in 13 people in Australia will develop bowel cancer
  • Bowel cancer is Australia’s 2nd biggest cancer killer
  • 45% of people diagnosed are women
  • 15% of people who are diagnosed are under the age of 55 years

(Source: Bowel Cancer Australia)

As a patient with the disease, being told that you are “too young to have bowel cancer” can place unneeded additional fear, distress and doubt in your mind. Patients can be left wondering- “so if I’m a rare case – do you know how to treat me?….. do the same rules for bowel surgery apply to a 70 year old as they do to a 30 something year old?….. does that mean that I have a higher chance of redeveloping cancer and dying?…I planned on another 40 years of life?”. As reflected in the Bowel Cancer Australia statistics stated above, us younger bowel cancer patients don’t necessarily feel like our condition is ‘rare’.

Today’s social media platforms allow patients with similar demographics – age, diagnosis, and treatment plan to easily connect. Patient’s may feel that their case is not rare or unique as they have already established on-line connections with people in a similar situation. It may be helpful to consider- will telling this patient that they are “too young” or a “rare case”, help in this moment?

Empathy

Empathy is showing a person that you are able to understand and share their feelings. As we know, some people are better at displaying empathy than others. We all know beautiful individuals who are ‘born’ with empathy. While other’s have to cultivate it and continuously work to develop and improve the skill. In my experience, I have found great benefit in the simple act of taking just a few minutes to pause (some will say – to become present) and consider in that moment if I was this patient how would I feel, and what would I need?

You could also consider, if this patient was my partner what would I need? Some professionals may find it easier to imagine their parent, friend or child – depending on the patient’s age. Also remember that not everyone is going to want the exact care that you imagine. Although every patient will benefit from a professionals who has taken the time to ‘put themselves in the patient’s shoes’. In reality, similar advice could be applied to almost any industry – and even in our personal lives.

The patient/health professional power dynamic is overt. The patient is often feeling vulnerable, filled with fear and the future is unknown. Often we are laying in a bed in a hospital gown feeling stripped of our dignity; often unwell, uncomfortable or in pain; worried about the outcome of results of the procedure/ tests/ treatment; fearful of being unwell, nauseous, or being in pain; may have a library of stressful healthcare memories playing through our mind (if we have a chronic condition); and may be worried about our family’s wellbeing or work and finances (I have seen this often, especially from self-employed patients).

A health professional brings their skills, expertise, years of experience, confidence, personality and their own current well-being to the bedside. Patients will consciously or subconsciously scan their caregivers for cues of reassurance and confidence.  They will simply want to know “am I alright?” and “do you know how to help me, here in this moment?” Of course we are all pre-programmed with our own cognitive wiring and biases from the years of experience that have led up to our illness or injury. One phrase or sentence may trigger one patient and not another. Although in general, the simple practice of empathy will give all health professionals a strong basis for providing quality  care.

Time Poor?

Understandably many health professionals feel that there isn’t enough time in their day- how can we realistically achieve this for every patient? The time investment in the practice of empathy will save you time in the future. A more relaxed and calm patient is more likely to answer questions accurately, follow instructions, and may even experience better health outcomes (Hojat, Louis, Markham, Wender, Rabinowitz, Gonnella (2011); Kim, Kaplowitz & Johnston (2004).

Grateful for empathy

I am so grateful for the many empathetic health professionals that I have come across during my patient journey. The first day after my surgery, a wonderful nurse sat with me as I cried when I couldn’t initially stand-up because of dizziness, pain and weakness. I told him that I couldn’t believe that I had failed on my ‘first test’. I was so distressed that I didn’t have the strength to stand. He looked at me and said that I was amazing, he could imagine how I must be feeling, that I could try again later when I was ready, and if I only managed a few ‘marches on the spot’ than that was enough. A few hours later when my husband arrived, I was eager to try again and I managed to stand with my fresh surgical wound, multiple drips, I.V poles, drains and catheter. I successfully had a shower with minimal help and I felt like a superhero.

Another wonderful nurse was looking after me on day 5 after my surgery. It was a particularly emotional day. I was missing my husband and my two little boys and my usual optimistic self seemed like she had been buried under the load of worry and opioids. The nurse told me that fresh air and sunshine always helped her on tough days. She suggested to me that I go for a walk, and gave me the confidence to walk the short distance to sit outside in the sunshine. She gave me directions for the shortest route, the back entrance that the staff usually use. This simple act of kindness and encouragement boosted my spirits, and reminded me……. that I was still me. Later that day I successfully completed a further two laps of the ward.

Empathy was also shown by the ‘nurse in-charge’ who visited me every shift that she was on, and showed wonderful compassion. She took the time to talk me through my ‘daily care plan’, on the night before my surgery gently broke the news that I wouldn’t be eating for five days, suggested that my son’s didn’t visit until day 3 after my surgery because of how I would be feeling but also to ‘protect’ them. She also shared her own personal health challenges that while different to mine meant that she was able to put herself in my shoes.

And most recently, it was my surgeon when he reviewed me at my 6 month check-up. He sat quietly in support, while I cried when he began to talk to me about the regular checks that I would undergo over the next 5 years. I had “perfect” blood results on my most recent tests, and I felt quite ridiculous that I was crying in his office – again. Fortunately, he sees this regularly and he was able to assure me that I was very ‘normal’, and it can be quite traumatic for a patient to return to the environment where they were given their diagnosis. He spoke to me in terms that I could relate to – “Sally, I understand. Sitting here in this room brings it all back, from when you were last here (and that was when we were planning your surgery)”.

The simple acts of empathetic care that I have been shown has transformed my patient experience. For which I will be forever grateful for.

Saying thank-you

It is so simple but in the midst of stress, sickness and pain -the words “thank-you” can escape all of us. Our health professionals are just like all humans and do like to be given a “thank-you”. They also like to be reminded when you think that they are doing a good job. Feedback always helps us to improve our care.

My experience and thoughts shared in this blog, are of course not rocket science. It is the basis of what health professionals learn at university and through watching and modelling our best mentors. Empathy in particular can sometimes be forgotten during times of workload pressure or when our own personal life is strained.There is so much truth to the old saying that “patients will always remember how you made them feel”.

Thanks for reading.

2 thoughts on “Working with people ‘too young’ to have bowel cancer, and the benefits of empathetic care- a patient’s perspective

Add yours

  1. Thank you so much for sharing your story! Reading it blows my mind because it’s so similar to my own. 31yrs old paramedic, just niggling pain for a couple of days but saved by an amazing GP who pushed to look into it further-diagnosed with stage 3 bowel cancer.
    Since my diagnosis and treatment I have had so many people comment “but you’re too young to have bowel cancer”, which drives me mad because I’m obviously not.
    So thanks for touching on this point especially. We need people to be aware this is not just a disease reserved for old age.

    I hope you are doing well, take care x

    Like

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