I have been approached by a lady in the USA who represents a company called American Recall Center, which serves to educate people who are about to undergo medical procedures. They help them to know what sort of questions they should ask, so that they are as informed as possible beforehand, which should alleviate their fears. She felt that with my recent experiences I might be able to help with some input. She has asked me to provide a link for “Patient Safety Alerts” on their website:
where people can sign up. Their top priority is patient safety, whatever procedures or drugs are prescribed for them.
It’s very common for people’s minds to go completely blank when confronted with bad health news, and for any sensible questions to go straight out of the window. Hospital staff here in the UK at least, are much more prepared for this nowadays, and will always give people ample opportunity for talking and asking questions, even if it doesn’t happen at the time – they will always be able to see someone a few days later, once the news has sunk in and they have a bit more idea of what to ask.
It is also very natural for people to be very afraid, and to react in unexpected ways – they can become totally numb, or very angry, or tearful, and it is very hard to be rational at such times. It is important to remember that you are not alone, and that many in the past have trodden the same path as you, and the staff are dealing with these issues all the time.
I have had lots of advice from people, professionals and non-professionals, to write down everything as I think of it, because once you get in to your appointment these things tend to get forgotten! When I first saw the surgeon, I had such a long list of questions that I was a bit embarrassed, and he laughed at me because he could see I was hiding it! He was very happy to answer them all, and many were answered before I even had the chance to ask them. I wrote down the answers beside each question as he told me, so that I had all the information. I also wrote down things he told me, for which I had had no questions. When I got home, I read it all through carefully as soon as possible, and collated it into a format that was easier to read and remember. The doctor won’t mind you making notes.
There are many different procedures people undergo, of course. My experience was to have my large bowel and rectum removed because of cancer. When they first told my hubby and me, immediately after I came out of the colonoscopy, that they had found “something they didn’t like the look of” and that I would have to have surgery, my first question was, “Could it possibly be benign?” At that stage, all she would say was to repeat that they didn’t like the look of it. As the conversation proceeded, it was clear that I had a malignant tumour. I was given a sheet of paper with contact numbers on it and the names of the people who would be caring for me in the coming weeks, and was told that they would be very open with me as regards information, and that I would be fully involved in any decision making regarding my care; they wanted me to feel in control of things, which would prevent me feeling too vulnerable and afraid. This was very reassuring, and helps no end in bringing about the very best outcome to one’s procedure, with a faster and easier recovery, with fewer post-operative complications. Anything that reduced stress is good.
Everybody seems to have been able to give me ample and adequate time to discuss things in detail. I had excellent appointments, for example with the anaesthetist (pre-assessment) where everything about the Enhanced Recovery Programme was explained, and what extra care I would need to make allowances for my M.E. and heart problems. When the plan was changed from simply the removal of the cancerous portion and sewing the ends of the bowel together, to a total colectomy and the formation of a permanent ileostomy, this was fully explained and I had ample time to process the information. It was gently and kindly done. I was involved with the stoma team from the word go, before my operation, to prepare me for what was to come, and my questions were all answered, and information freely given. I was provided with a starter pack with some sample bags to handle and get accustomed to, and some information booklets and a DVD.
I had special concerns about not being rushed into too speedy a recovery after surgery, because of my disability, and was reassured that this would be taken into account. I had a brief problem with one of the nurses and had a vulnerable moment when I felt not listened to, and forced to do more than I felt able to do, and I passed on this complaint, and thereafter there wasn’t a problem. Communication is key. If you have any worries, it is vitally important to tell somebody straight away – if you have told someone not adequately qualified to deal with it, they will pass it on to the right person, or fetch that person to speak to you. I believe it is very important to remember that YOU are the most important person and that the staff are there to care for you and do what is best for you, and they have a responsibility to listen to all your concerns, and that they won’t know what is worrying you if you don’t tell them.
Many people in the past were very afraid of too much information and preferred to proceed in ignorance. This had the potential to generate a lot of unnecessary fear, which affected the outcome of the procedures involved. I think more people these days are wanting to be much better informed. This is largely due to better education, and freely available information on the Internet – people are much better informed generally these days about medical matters, and the mystique of the medical profession is becoming a thing of the past, which is a good thing. Doctors are not gods, and they are not perfect; if they are any good, they will be open to proper balanced discussion, and if you are not getting this, and are feeling short-changed, you have the right and responsibility to say so, not just for your own benefit, but for the benefit of those coming after you. They are doing their job all the time, day in, day out, but we only have one chance at this, one operation, one problem, and it takes on huge significance in our lives, and sometimes doctors need to be reminded how differently these issues affect us, from the way they affect them as professionals.
Whenever an operation, test or procedure is recommended for us, we can feel a lot more secure if we know exactly what is being proposed. For instance, someone undergoing an MRI scan may be terrified because they suffer from claustrophobia, and they may want to know if there is an alternative procedure they can undergo instead, or whether they can be sedated. It is important to understand any risks of procedures, as set alongside the benefits.
I found that doing a lot of online research about my various procedures helped a great deal. For instance, when I knew I was having chemo, and that this would be infused into my body via a PICC line, I went on the Internet and had a look at a lot of information and pictures of this; it was not something I had come across before. I could see that I would have a line coming out of the crook of my elbow for the entire six months’ duration of the treatment, and this would have to be covered up between treatments. With the summer coming on, I didn’t really fancy this, and was worried about knocking it, showering, the risk of infection etc. etc. I did some research into alternatives and discovered the port-a-cath, which is embedded completely in one’s chest with nothing to see at all between treatments. OK, the procedure to insert it is much more complicated than the PICC, involving a general anaesthetic, but thereafter, the hassle is completely minimised, making life very much easier and more comfortable. I decided that this is what I would prefer, so I phoned the specialist nurse and asked if I could have it. She was amenable to the idea, on condition that my oncologist approved, and the approval came back without delay. I felt empowered that my choice was taken seriously and acted upon, and I feel very much more secure and confident as a result. I would have been happy to go along with the PICC instead, if they came up with some reasonable objection to the port-a-cath; it is important that we listen to the experts as well as talk to them about what we want; after all, they have the information and experience and ultimately know what is best for each individual, but there is flexibility in every situation, and there should always be the opportunity for equal, open and reasonable discussion. You and those involved in your care should work together as a team and it is important to develop a good working relationship with them; they will get to know you and know where you are coming from, your attitudes, your hopes and fears. Again, communication is key, making your views and feelings known, and listening to the wisdom of the experts.
For anyone about to undergo any medical procedure who is reading this, I hope it has been helpful and informative. Please do not hesitate to comment and ask any questions you may have, or add anything you may think I have left out. Anything we can do together, to help us get a better service and help us to feel better about what we are going through, is bound to be a good thing.