Communicating with people newly diagnosed with cancer

July 9, 2017

Even after 30 years of working in Oncology, I still find myself striving to uncover the answer to how we can consistently and effectively communicate with people who have recently been diagnosed with cancer. Whether it be as a nurse caring for a patient, or as someone supporting a loved one, or even conversing with a work colleague who has cancer. Although I might not have a definitive answer as to what is effective communication with people newly diagnosed with cancer. I do have some thoughts based on a pretty unique perspective on cancer, which I would like to share with you if you could spare me 15 minutes to read this post.

During that time I will try and simplify what is a potentially complex area of cancer care and offer you a simple practical approach which any healthcare professional could take that might help them in understanding their next newly diagnosed patients communication and informational needs.

Firstly I would like ask you if you remember the first patient with cancer you ever cared for? Can you do that? Good, now I would like you to keep thinking of that patient for the next 15 minutes while you read my post and try to remember how you were feeling and how you were interacting with them at that time.

If you’ve read my other blog posts you will know it was over 30 years ago now, when I was newly diagnosed with Non-Hodgkin’s Lymphoma at the age of 25. At the time I was married with two children (one of whom was just 8 weeks old). And sadly, I still vividly remember the fear and sense of isolation I felt at that time only being made worse by a lack of communication from healthcare professionals (HCP’s).

In actual fact, it was the lack of communication during that time that inspired me to give up my engineering career and train to be a nurse. I knew it was unlikely I would ever become an expert in medicine but I did think I might do a better job communicating with cancer patients, or at the very least do no worse. How quickly I realised just how challenging the whole thing can be as I fumbled my way through my nurse training and then worked as a staff nurse on acute general wards before eventually specialising in Oncology at the Royal Marsden hospital.

Sadly, I left nursing in the NHS 22 years ago, which is a long time in Oncology and a lot has changed. For example, great advances have been made in improving survival rates over that time. Indeed, recent estimates suggest that as many as 2.5 million people are now alive and living with cancer in the UK1.

However, for the past 22 years cancer has continued to dominate my life working in Oncology in the Pharmaceutical industry. And, as a member of the public rather than a nurse, when I have continued to communicate with cancer patients on an all too regular basis as sadly work colleagues, friends and relatives have been diagnosed with cancer. I’m sure you can sense my disappointment when I tell you I have continued to see and hear about many of the shortfalls in the quality of communication I experienced, still being present today. Indeed from my own perspective, little had changed when recently my father was unexpectedly diagnosed with metastatic prostate cancer during an acute hospital admission with unrelated renal failure. He died just 10 months later.

It’s not all been bad though. Around the same time, believe it or not, my border collie dog Bracken, was diagnosed with high-grade large cell multi-centric lymphoma. However, in contrast to my Father, the quality and amount of communication and information we received throughout his cancer journey was excellent. Bracken died over 4 years after he was diagnosed. But we’re not here to discuss effective communication with animals.

And the complexity of what constitutes effective communication with ‘human’ cancer patients is perhaps no more apparent than when considering the period immediately following diagnosis. So in an attempt to keep it simple using cartoon slides to illustrate my points, I would like to share with you the areas I feel are of particular note when discussing ‘the communication and informational needs of someone following a diagnosis of cancer’.

Interaction

I think we all agree effective communication is a critical component of care and support for anyone with cancer, regardless of what stage of their journey they are at. However, studies concerned with the psychological impact of cancer have consistently identified the time immediately following a diagnosis as the most demanding period for the patient and their relatives. For many patients the sense of isolation is no more apparent amongst their family and friends than when they have just learned they have cancer. With social interaction often being minimal or non-existent during that time.

But knowing what to say to someone with cancer can be really difficult. Even for nurses. Deciding on how much to communicate, when and who should do it is challenging. Whether we might communicate too much or not enough, whether it’s the right time to start a conversation and whether it is the right topic, are just some of the complexities around effective communication. Not surprising then that patients often report experiencing a sense of isolation following their diagnosis. It is vital that we interact with patients, making ourselves available to answer questions, or to just listen. Avoiding the patient will probably only add to their sense of doubt and insecurity.

There is so much we can find out about the patient without having to know what to tell them at this early stage. There’s nothing wrong with admitting we don’t have all the answers so early in the patient’s journey.

It could be a great opportunity to demonstrate attentiveness, interest and friendliness, which are all qualities that the 2016 NHS Cancer Patient Experience Survey2 has identified as being just as important to a patients positive experience, as providing them with information.

Perception

Another point for consideration is that the patient’s reaction to their diagnosis can be heavily influenced by existing perceptions of cancer. Unfortunately with the growing incidence of the disease, in many cases the person may have already formed strong associations with the word cancer, either directly as a result of someone they know having experienced it or through hear say, or what they have read.

Sadly, we’re all too aware of how bad news tends to travel faster than good news. Either way it is important to remember a patients perception is likely to influence and be as unique as, their communication and informational needs.

Perhaps interaction could entail finding out what someone newly diagnosed already knows or thinks about their illness, in order that steps can be taken to correct any misunderstanding or concerns and begin to find out what their needs might be. We should also remember that how patients are affected by their cancer diagnosis, can have far reaching consequences beyond the patient themselves. It is estimated that for every person diagnosed with cancer, there are as many as 12 other people who are directly affected by that persons experience. Making it even more important that we get it right from the start as we see more and more people being diagnosed each year.

Information

Interestingly enough, people with cancer seem to receive the majority of their information at the time of diagnosis and not at other stages along the pathway. Yet some publications including one in 2009 by Sheldon, et al3. Have suggested that almost 50% (43%) of patients would like more information than they are given about their cancer. For anyone hearing they have cancer for the first time or facing the diagnosis of recurrence or metastases, perhaps most of what is heard is not the discussion about their diagnosis, staging, implications, and treatment. Instead during that first visit, perhaps all the patient hears is “Blah, blah, CANCER, blah blah What people are told and what they hear are not always the same thing. Which makes me think we really need to embed information giving throughout the patient journey and not just at the beginning. And whenever we do, we should ensure that people understand the information we give them.

In the 2014 NHS Cancer patient experience survey4, 66% of patients said they were actually given easy to understand written information about the type of cancer they had. But I can’t help wondering what information the other 34% were given or rather not given. However, interestingly enough there is data that questions what might be going on here. In one study in 2008, by Jansen et al5. 260 patients with newly diagnosed cancer who had met with an oncologist for the first time were profiled. All patients were interviewed to determine what they were told about diagnosis, prognosis, and treatment, and their answers were compared to audiotaped recordings of the actual conversations. Irrespective of age, participants recollected less than 50% of the information they had been given. Interestingly enough in that study, those patients who asked the most questions had the poorest recall. Which suggests to me that optimal information giving will require some thought on what information to give, who should give it and when. With much of the information needing to be given more than once and in multiple formats.

Consistency

The rising numbers of patients alive with cancer in the UK are being driven by improved survival outcomes as well as an ageing population and increasing incidence rates. It was estimated that by the end of last year 1,000 patients would be diagnosed with cancer in the UK every single day6. It’s not surprising therefore to think that care will increasingly have to extend more and more into the community.

Whilst the most recent NHS Cancer Patient Experience Survey in 20162 has shown encouraging trends in many aspects of patient satisfaction with their cancer care in hospital, there still remains a need to improve support for patients and their carers in the community. Indeed, according to that survey:

  • A third of patients mentioned that their GPs and nurses did not support them enough whilst they were being treated.
  • 46% were not given enough care and help from health and social services post discharge.
  • For two in five patients (42%), their families or someone close to them were not given all the information they needed to look after them at home.

It would appear to me that the quality of communication and information outside the hospital setting needs to be more consistent with what seems to be going on inside the hospital.

Complexity

I have to admit, there are probably more treatments ending with UZUMAB now, than there were chemotherapy agents when I started nursing. Which is good news for improving outcomes, but with progress often comes increasing complexity.

Patient consent is a legal prerequisite for anyone undergoing treatment for cancer, requiring sufficient and appropriate information in order to gain informed consent. Research tells us, that cancer patients who

  • receive good information and are spoken to with sensitivity,
  • feel they are being heard and involved in decisions
  • and who feel they are being supported with the consequences of their treatment

are more likely to rate the quality of their care experience favourably.

However, navigating our own way through the different treatment options and keeping up to date with trends is difficult enough, never mind trying to explain it to someone who perhaps has little or no medical background. This is even more challenging when you consider some patients will begin their cancer journey in non-specialist centres where their nurses may have little or no Oncology background.

During my work in Oncology, I have spent a lot of time trying to come up with ways to remind healthcare professionals particularly in the more general hospital setting on some simple steps, which could perhaps help them and their patients during the complex and psychologically demanding period immediately post diagnosis.

Using the acronym CAUTION, which has long been synonymous with the early detection of cancer, as a framework. I would like to hear your thoughts on the areas I am suggesting as particularly important in understanding what a newly diagnosed patient may need by way of support.

Communicating with the patient

Patients often experience a sense of isolation following a diagnosis of cancer. It is vital that healthcare professionals make themselves available to answer questions, or just listen. Avoiding the patient will only add to their sense of doubt and insecurity.

Ascertaining individual needs 

It is important to identify problems and needs specific to each individual patient. In particular, the nurse should recognise the patients informational needs and plan nursing care accordingly. Information should be given carefully and at a level appropriate to the individuals needs.

Understanding the disease 

A basic understanding of the different types of cancer will help nurses to anticipate and discuss with the patient, potential problems associated with their particular illness. REMEMBER, each cancer has its own prognosis.

Treatment

For many patients the prospect of treatment can be more frightening than the disease itself. It is important to remember that careful management can minimise and even prevent many of the side-effects of treatment. A good understanding of what to expect will help both nurses and their patients anticipate and manage side-effects better.

 Involving significant others 

The patient should be encouraged where appropriate, to be involved with the planning of their care and treatment particularly with regards continued care and support. Involving family and friends can have much to offer in the way of support and encouragement.

 Organising resources

Successful management of people with cancer both inside and outside the hospital setting requires a multi-disciplinary approach. The nurse should be aware of the resources available and recognise when and where to get help. REMEMBER, many patients will require continued care and support whilst they are at home.

Nurses

Your response to cancer patients and their diagnosis can hugely influence their ability to cope. A positive approach to the disease by nurses will go a long way towards altering preconceived negative attitudes.

In summary

We’ve discussed the importance of interaction, the influence of perception and the value of information. We have considered the need for consistency of care and highlighted the complexity of caring for someone who has been recently diagnosed with cancer. However, I promised I would keep it simple and try to offer you a practical approach that could perhaps help you in your daily practice when meeting your next newly diagnosed patient, so here it is;

At the beginning of my presentation, I asked if you could remember the first person you cared for with cancer and I suspect a lot of you could. That’s because I also remember my first patient, his name was Jack Fisher and he was newly diagnosed with Multiple Myeloma. And why do I think I remember my first cancer patient from 29 years ago? I think I remember him because of how I felt and how I interacted with him during that time.

You see I felt very scared at the time and desperate not to make any mistakes particularly with my very first cancer patient. I needed to be extremely Attentive to Jack and his needs, to ensure I didn’t miss anything. Being new to caring for a cancer patient, I had a lot to learn. So I was Interested in everything that was going on with Jack during that time. As for being Friendly, well all I can say is I felt so out of my depth at that time, that I needed as many friends as I could get, so being Friendly seemed a natural approach.

Interesting isn’t it that the most recent NHS Cancer Patient Experience Survey tells us that for many patients attentiveness, interest and friendliness shown by healthcare professionals are considered just as important positive contributors to a patients experience as giving information. Yet they are something even a rookie first year student nurse can do, without even thinking about it. I wish I could honestly say I adopted the same approach to every subsequent patient I cared for as I became increasingly desensitised to the enormous challenge a cancer diagnosis can be for someone.

If there’s one thing I hope my blog post will convince you to do, it is to treat your next newly diagnosed cancer patient with the same level of genuine attentiveness, interest and friendliness, I am certain you showed your first.

Thank you for taking the time to read my blog. I hope you found it useful and thought provoking. Any comments or reactions would be very welcome.

References:

  1. Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202. Macmillan analysis based on extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015
  2. NHS England Cancer Patient Experience Survey 2016 Summary of key national and local results 2015. (Revised 13 July 20-16) https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-patient-experience-survey/
  3. Sheldon H, et al. An Evaluation of the National Cancer Survivorship initiative test community projects. Picker Institute. 2009
  4. NHS England Cancer Patient Experience Survey 2014 https://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2014-national-cancer-patient-experience-survey
  5. Jansen J, Butow PN, van Weert JCM, et al. Does age really matter? Recall of information presented to newly referred patients with cancer.J Clin Oncol. 2008; 26(33):5450-5457.
  6. Macmillan Cancer Support estimates 2014. Incidence predictions are based on the assumption that age specific all cancer incidence rates remain constant at 2012 rates. Predictions based on applying the UK 2012 incidence rates for 5 year age groups to 2012-based population projections from the Office for National Statistics. Latest incidence figures for each nations taken from Office of National Statistics, |ISD Scotland, Welsh Cancer Intelligence and Surveillance Unit and from personal communication with the Northern Ireland Cancer Registry (May 2014)

 


“Do we want more kids?”

March 5, 2016

Easter 1986

Eventually all the tests were complete and the results were in. I was told I needed radiotherapy which would require six weeks of treatment at Cookridge Hospital. Considering where I lived, it was suggested that I stay in hospital Monday to Friday each week and go home at the weekend. That way they said, I wouldn’t have to endure a seventy-mile round trip in ‘Ye Olde’ ambulance.

Easter was looming close and they wanted to start my treatment before the break. The radiotherapy planning was a slow process, involving many more x-rays and scans. I also had eight little tattoos marked on my body so they could accurately line me up on the linear accelerator each time I had my treatment.

I didn’t ask many questions in those days, I assumed they would tell me everything I needed to know. One radiotherapy technician even told me I would be having 50 Grays of radiation or in other words 50,000 sMv’s. Yeah I know,………….. I had to ask him:

Me: Is that a lot of radiation?

Radiotherapist: It’s the equivalent of about 500,000 normal chest X-rays.

Me: A lot then?!!!

Unfortunately I was soon to learn it’s a risky business taking a passive role. Finally they announced my treatment could start. Summoned from the ward, I made my way through the many corridors to the radiotherapy suite. I still remember the weird smell inside the linear accelerator room as I undressed and put on a theatre gown. Once I was positioned on the radiation machine everyone vacated the room.  I felt very alone as I wondered what this invisible treatment would be like and whether or not I would feel any pain. All of a sudden a doctor burst into the room.

Doctor: “You do have two children, right?”

Me: “Er, yes I do” Wondering if he was about to suggest they join me!

Doctor: “Do you want any more?”

Me: “Er, why?” Could he not see I was too busy for that sort of thing right now.

It was a really weird situation. I was lying on my back trying to psyche myself up for the treatment and some guy wanted to know about my five-year plan! He came close enough for me to finally see him.

Doctor: “Unfortunately the inverted-Y radiotherapy you’ve been prescribed will almost definitely leave you sterile and unable to have any more children”

After what seemed an uncomfortably long pause.

Me: “Can I discuss it with my wife?”

At that, he aborted my treatment and suggested I call my wife that day.

It could have been a really difficult call to make, however considering we’d just had our second child ten weeks earlier we both agreed having more children wasn’t high enough on our agenda right now to risk compromising my treatment. I would have my first treatment that evening.

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice….sorry!

 


‘I still have a cracking plan……’

August 18, 2015

“No long faces now?….”

It was the day of my check-up when I heard I had passed my nursing entrance exam! However, in light of my recent illness the nursing school said they would need a reference from my Oncologist before they could confirm my acceptance.

I was quietly confident my Oncologist would be very supportive of my cracking plan. So I was quite surprised at what he said when I saw him during my check-up.

Oncologist: “Are you sure you want to be a nurse?”

Me: “Er, yes”. (I actually wanted to say ‘Er no, I think you’ve got the wrong patient’ but I thought better of it)

Oncologist: “An oncology nurse?”

Me: “Of course.”

Oncologist: “It will be very hard work, both physically and emotionally.”

Me: ” I know, I used to be an engineer.” (He didn’t even smile at my joke)

Oncologist: (Following what seemed a very long pause) “You can’t go around with a long face you know”

I was surprised he felt the need to say that; I thought my engineer joke was quite funny. Then again it wasn’t that funny and I guess he was used to seeing me under very worrying circumstances and understandably may have thought I was a bit of a miserable sod!

I assured him he had nothing to worry about. “Good” he said, “Because I’ve just written to the Chief Executive of the hospital telling him how disgusted I am that the health authority sees fit to ask me for a guarantee that your lymphoma won’t relapse. Instead, they should embrace your enthusiasm and support you in getting your life back.”  Then he smiled and said “Don’t let me down, will you?”

“Day one as a student nurse. Excellent, I wasn’t the only male and I wasn’t the oldest in my group….nor the tallest!  Although I did have the least hair, sadly”

I was delighted when I eventually heard that my application had been successful and I would be commencing training in the summer. It was time to hand in my notice at work and tell my burly engineering colleagues that I was leaving……….. to become a Student Nurse!

As I told people about my nurse training course the question of salary increasingly came up. I was trying not to think of that too much, it was hard enough getting my head around such a huge career change without dwelling on something as trivial as a 70% pay cut. “Yes it would be tough financially” I would say to them, “But I think I need to do this”

My wife and my Mum were very supportive, however my Dad seemed less impressed. With a one-year old at home and my wife only working part-time we were below the national poverty line which meant our older child got free school meals. It was a bit embarrassing I guess, but then it would only be for three years!…….would it not? I figured perhaps it was time to do some serious money-making cartooning!

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice.


“I have a cracking plan!!!”

August 15, 2015
How do you revise for a nurses entrance exam?

‘Elephantiasis is…….”

It was Spring 1987, just under a year since I had finished my cancer treatment. It seemed a great idea to me;…….. I would apply to my local hospital for a place on the nurse training course and then become a cancer nurse, simples! Unfortunately however, because I was a mature student I first had to sit an entrance exam. I had no idea how to prepare myself for a nursing exam. I thought I might start by digging out my readers digest health books again and revise what I already knew about elephantiasis.

Fully swotted up on everything you ever needed to know about elephantiasis, I arrived for the exam. The room was full of eighteen-year old girls who all looked like exam experts. Probably because they were so used to them, having not even left school yet. I was definitely the oldest, ugliest and male-ist of them all!

I remember feeling glad that I hadn’t told too many people about my brilliant plan to become a nurse. Just think how embarrassing it would be, telling people I couldn’t even pass the entrance exam. Not only did I need to achieve a minimum exam score just to be considered for a nursing course, I also had to perform well enough to secure a place on the higher qualified Staff Nurse course, (which was crucial for my plan to work). There was quite a lot at stake,….at least I was clever enough to know that much. As I scanned the exam paper I had a pleasant surprise; just about every question was mathematical in nature, it was perfect for an engineer.

After the exam I felt quite smug as I joined the other applicants for a coffee and listened to them complaining about there being far too many numerical questions. I was fairly confident I’d done pretty well in the exam, however the big question remained as to whether or not the Health Authority would be willing to invest in training a twenty-six year old ex-engineer, who had barely finished his cancer treatment!

"Who would have thought it, Maths in a nursing exam!"

“Who would have thought it, Maths in a nursing exam!”

After the exam I had an interview with the course tutors and told them I really wanted to do the three year staff nurse course. They told me I would have to do very well in the exam if I wanted to get on that course. They also told me they had requested a reference from my oncologist on the assumption I would get the required exam results. I hadn’t thought of that! I began wondering what my oncologist might say about my potential to be a nurse. I was going to see him for a check-up later in the week so I decided I would ask him.

It was a long week, not least because of my impending check-up with the oncologist; which always put me into some kind of ‘pseudo-disease relapse state’ where every ache and pain seemed a signal that my disease was returning. But also because I was still waiting for my exam results. I hated getting exam results, because mine were usually bad! I began to have self doubt about my plan; “Who was I trying to kid? Why am I doing this so soon after my cancer? Do I even care if I don’t get into nursing, it’s probably rubbish anyway?” I asked myself, trying my best not to pin my hopes too high for fear of failure. I spent most of my spare time that week drawing cartoons, which always seemed to help whenever I was stressed…….

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice.


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