Miscommunication in the hospital system impacting patient care.

13th July 2015: Westmeed Hospital, Sydney, Australia

The entirety of the circumstances today has made me feel extremely unsatisfied with the overall level of care I have received since my admission. My surgeon is of course the exception to the rule. An incessant beeping for the past two hours has only heightened my feelings, particularly as the beeping indicates the necessary pain relief medication is unable to be administered.

A list of my eventful day would show:
– I was brought out of my sleep during the early hours of the morning by a nurse who pulled on my IV stand to wake me. Upon rising, I was advised the bed needing to be used, meaning I would be changing wards.
– Two nurses tried to convince me of having the same dosage of medicine required when my pain was scoring an eight opposed to a two (10 is the highest possible score).
– A doctor confirmed my name, however, thought the reason for my admission resulted from liver Cancer, and advised me all prior plans discussed with my surgeon were inaccurate. Just to note, no contact had ever been made with this person before.
– A second doctor reinforced the fact of my admission resulted from having Liver Cancer, and implied I must have been too sedated over the past three days to recall this information as numerous conversations had occurred. Just to add, my mum was in the room throughout this conversation, and I observed her nearly fall off the chair. My mum and I started to digest this new information only to be interrupted after 10 minutes by the same doctor who was apologetic in saying he was incorrect, and I did not have Liver Cancer.
– I was then in pain for over an hour left waiting for a scan to be completed, resulting from the nurse not informing the reception I had arrived nor handing over my notes.,
– Now the incessant beeping has once again commenced leaving me beyond a point frustrated enough to write any further. I am hoping the latest attempts actually bring this annoying sound to cease, and finally a place of respite is found.

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Communicating with Doctors

3rd September 2914: London, United Kingdom

Relationships were mentioned last week. Essential to any relationship is communication, and for people experiencing Cancer, this is a pivotal matter. Personally, a degree of frustration was experienced today, yet, some points can also be highlighted from this chain of events to form a discussion. A quick summary of the situation results from my current stay in London, and the need to visit St Bartholomew’s Hospital for checks, particualrly when high levels of nausea and lethargy for a period deem a check essential. Both points ultimately lead to a worry about the illness returning or toxicity from chemotherapy. Results from tests undertaken showed that the form of chemotherapy I receive (Mitotane) was not within a recommended therapeutic guideline. Consequently, the doctors in London instructed me to increase my dose. Rather than following the advice, I informed the staff in the first instance I would prefer the point discussed with my doctor in Sydney. My reasoning being that I am in a research project, with the specific objective to ensure I receive optimal levels of Mitotane. Furthermore, the message reinforced my alignment to the doctor whilst also showing a respect for his professional opinion. The only issue was that a response from Australia had not been obtained for eight days, maybe not so long, however, it seems an eternity during times whereby I am crippled with nausea accompanied with feelings of fear. I have always wanted to ensure any follow up related to my care and treatment is addressed at the nearest possible time. Over the period of eight days, the London team had sent one email and I had sent two emails, one included his secretary into communication. On the eighth day, the following email was exchanged, immediately relieving my stress due to my objectives being achieved. Just to note, I have blocked out both all names for purposes of confidentiality.

Dear Professor,

Just a follow up note to convey I am aware of the demands you have from your role and recognise there are many people who would be requesting information and assistance from you.

I am not expecting an immediate response every time I have a query, however, am hoping for some clarity specifically on the matter of increasing the Mitotane. The email from the registrar at St Bart’s showed my current Mitotane levels were below the therapeutic guidelines. I am aware the plan was to slowly increase this dose, and now after approximately four months, I am concerned that the drugs that I am putting into my body aren’t performing their intended function.

Obviously, I have no knowledge about this so am just asking for clarity and reassurance, as I’m not certain whether a clearance is needed from Newcastle prior to the increase in dose, whether the recommended therapeutic dose is at all applicable (previous conversation about there being no-standardised level for Mitotane use) or if there is another reason I am unaware of?

Similar to previous requests, I do not intend to come across in a critical manner. I would just like to be more informed about my care and treatment, as understandably feeling uncertain on specific matters causes me to experience a level of stress.

Thank you for your time

It is not my intention to suggest this is the best example available. Rather a basis to show how I went about getting my objectives completed and to also outline some points for others to consider when communicating with doctors:
– Direct contact with the doctor is desired in comparison to communicating via a secretary or administrative worker. This is not always going to be possible. Ask at an early stage to obtain the mobile phone, email and what to do in emergencies.
– Providing a request in writing allows you the time to put together your points without missing any information. At times, you can hangup the phone, then have the moment of ‘ahh, I didn’t say’.
– An email allows you to get someone to check it prior to sending for corrections and suggestions and is a reference point, with clarity on timeframes for when it was sent, the content of the email and what was agreed.
– The email example above shows an understanding of the competing demands of the doctor all requiring his/her immediate attention. Therefore, it is essential to be mindful of how you get your message across as you don’t know what sort of emergencies he/she has to encounter.
– Be concise, assertive and use specific questioning to outline what is concerning you. Hostility is not going to achieve anything, nor is a lengthy document. Keep it short, clear and simple, assuming that he/she has a number of patients to see plus all the emails that will be waiting in the inbox.
– Don’t be afraid to follow up on points when you don’t feel the response has been adequate or the timeframe in getting back to you is too slow.

Some points to consider in face to face meetings include:
– Be prepared, having notes and a folder containing all your information. One of the most important points is that you need to be your expert, of course you are not to have all the medical knowledge, however, extensive reading of your specific area of inquiry and numerous quesitons should be asked in each appointment.
– Ask those around you for points about what you plan to say and ask for suggestions for anything you may have missed.
– Explore research possibilities, it is better for you and the Cancer community should you be involved in a study.
– Explore what other care and treatment options are available, including other treating practitioners.
– Think about the varying people providing support along the journey. Consider taking someone, close, i.e. spouse/parent/sibling/son/daughter/relative or friend with you to each appointment.
– Finally, remember it is your body so take charge and utilise the medical knowledge available plus look to increasing your knowledge about other factors to be discussed at later stages, i.e. nutrition, movement/exercise, meditation/mindfulness, stress reduction, relationships, religion/spirituality & the surrounding environment.

Decision to commence journalling

27th August 2014: London, United Kingdom

The date of the entry is fairy self-explanatory, marking today as the starting point for sharing the thoughts and feelings collected over the past eight months. My reason bending sharing these entries mirror the feelings for embarking on a mission to track the experiences of haing Cancer (a point to be later revealed). With that short introduction finished, the below content and future entries all follow a chronoligical order recorded on the date provided at the beginning of each entry.

Prior to commencing a number of points need to be established. Firstly. I’m not going to have rules governing the entries in this process, i.e. everyday an entry needs to be made, the content needs to relate to my situation or a sequential pattern needs to be followed. A prime example of not adhering to a sequential order will be demonstrted by not following immediately with a second or third point, and instead look more closely at indirect reference made above. ‘My situation’ is otherwise known as the Cancer that was inside my body at the start of the year. By not labelling it as Cancer questions whether I have accepted the reality of the situation or if the terminology is used as a strategy to undermine it’s influence whilst enhancing my own control. From this very initial paragraph it is evident that this and many other topics require continuous revisiting and also establishes a theme about the somewhat subtle and more direct attempts I make at finding a stratergy to manage my health and overall life.

Second point, and being brutally honest is about the audience and purpose of these entries. Yes, the use of ‘these entries’ indicates a commitment to continuing this process, which then leads me to wonder whether my ego is largely at play here, screaming “it’s showtime, lets put this together to write a book or use a guide when running the groups that I have envisioned”. The group is a seperate idea whereby focusing on supporting individuals with Cancer and ideas for how individuals & carers both understand, process and prepare for their upcoming or present situations arising from their Cancer diagnosis. I am fully aware that the idea requires timescales and deadlines to actually see the idea become a reality. Otherwise, it will is just be like the market stall in London, the creation of an app or numerous other ideas that have gained my full attention than faded quickly into a past of thinking ‘what if’.
So back to the journal, the purpose/audience and the need for honesty. I would like to think that it may be useful to collect some of my thoughts and then someday, who knows, why not dream big and think that groups will be running and a selfhelp book can be published. Already, a degree of fear is noticed whilst writing this first entry. Consciously I will write, ‘how I will use the material’ opposed to ‘how the material will be used’. I feel this terminology places me in a position that creates a future for me, a future of life and to hijack words by others, a future of survival. All sounding very dramatic, however, it is the features of my stratergy to work towards achieving long-term health and well-being. Furthermore, in a more pragmatic view, it can be used to track my thoughts, reactions, celebrations and challenges to equip me for future scenarios.

Third point, the timing of the journal. Why didn’t I start writing once ‘my situaiton’ started? Well, it seems rather simple, and is clearly demonstrated by two key words, motivation and meaning! Many direct/subtle remarks about writing a journal were made from the very beginning. Plus, the message was reinforced in a book read from Dr Ian Gawler (how to cure cancer), however, there was a lack of any motivation in undertaking the activity. Furthermore, it had no meaning in my life. Interestingly, I have tracked the physical exercises completed, symptoms and my eating/drinking habits prior to the escalation of hearing the news that I had Caner, yet, I didn’t have the need or could not find purpose in writing a journal. The logical question surely then must be, why now? I think as noted before, it is whether I use this for personal reflection to track how I was thinking and what I have applied throughout the process or if this in someway takes shape to help others. Already, a sense is felt whereby both examples outline the main obstacle requiring attention. The obstacle is whether I am going to survive. The response must entail a level of normality in these thoughts, however, recognising that I cannot entertain them. Instead, I need to create, dream and focus on that loving, happy, wholesome and healthy life awaiting me.

A shift off topic occurred again. Maybe the prior passage speaks for itself, i.e. that my motivation wasn’t focused on writing a journal. Rather, my belief and energy was directed completely to getting through it all. The reason for writing now, well, is it optimistic to think further entries will follow symbolising a future and the realisation of my dreams. Also, the thought came to me and like many aspects of our lives, there needs to be a number of elements in place to the formation of a tangible item, whatever that may be. So why now, eight months after surgery did I start writing? It followed a discussion with a manager at work. Before we got onto the speaking about cases, we were having one of those engaging conversaitons where you can bounce all the accummulated informaition onto someone and also listen to what they are saying. Mind you, he has also had a close personal encounter with Cancer. Therefore, a degree of comfort is found, and he simply asked whether I am writing any or all of this down, to which I replied no. When leaving, the thought came to my mind and seemed like a completely necessary task to start working on.