Guest Post by David Mapletoft, Diabetes Educator
Going into hospital can be a real challenge, especially for those people who have had diabetes a long time, and who are confident and competent in their self-management. Whether the hospital admission is for a medical or a surgical reason, your diabetes needs some special attention here.
Ideally your HbA1c will be as close to normal as possible prior to any planned surgery. The higher your blood glucose levels (BGL’s) are prior to surgery, the higher the risk of post-operative problems like infection.
The key is to be well informed, to take an active role in your own management, and to know who to call on if problems arise i.e. a friend or family member for support, or the appropriate health care professional within the hospital system.
Some of the problems people have experienced when in hospital are discussed below. The comments about these problems come from our Facebook community in answer to the question “in your experience, what would you like to see improved in the hospital system to improve the lot of a person with diabetes?” (I shall respond as ‘DM’ and in italics).
JR: My problems in hospitals, both public and private, are a general lack of staff awareness about Type 1 diabetes. They tend to treat it as one size fits all, and definitely do not listen to the patient. In a couple of cases I was on an insulin drip but not given boluses for meals, no matter how much I asked for these. Then they wondered why I was high!
DM: It’s an unfortunate fact that many people with diabetes feel that they are not listened to within the hospital system. One of the findings of the DAWN Study (as far back as 2000) was this feeling of not being heard. Often, the best way to be heard is to write a letter to a) the hospital patient liaison officer, and then if not satisfied with the response, to b) your local member of parliament – this generates a ministerial enquiry into whatever the incident is that you have issue with.
JR, The usual procedure when on an insulin & dextrose (glucose) drip is that the insulin dose is changed relative to the bgl (which is usually measured each hour). It’s not usual for people to be eating when on this treatment. If the drip is being ceased, then it is usual to give a dose of insulin with a meal, as intravenous insulin usually lasts only about 15minutes.
LR: Yes I would like to see more awareness from specialists in hospitals about type 1 diabetes, had my insulin drip ordered to be taken down by a respiratory specialist after 1 day, I was out of it with pneumonia and didn’t know what was going on and that equaled a disaster for my diabetes management, I was 1 sick girl for a while, had I been with it I would have told them not to take it down because I know where it goes from there
DM: LR, again, the teams of non-diabetes specialists within the hospital system often do not have the same level of knowledge and experience of the diabetes (endocrine) teams. In hospitals it is important to remember that the doctor you are seeing may be a junior doctor with little experience in diabetes management. One option for people to consider is that on admission they seek a consultation with the endocrine team. Firstly ask the doctors of the team that you are being admitted under to refer you to the endocrine team. Ask them to document the referral, and if they decline to refer you ask them to document why they are not making the referral. In hospital the more detail that is documented the more ammunition you have to go back to if a problem arises. If that fails, then ask to speak to the nurse unit manager (or equivalent) – this is the chief nurse on duty. Voice your concerns to them, and ask them to organise with the endocrine team to be involved in your care. Ask the endocrine team to document in your file whatever it is that you want as a part of your care. Example: if you do not want your drip to be taken down by anybody but a member of the endocrine team, ask that it be documented in your file (and ask that the person who is doing the documentation show you that it has been done). Of course none of this is easy, especially if you are unwell and cannot speak up for yourself. This is why it is also good to have a friend or family member on your team when you go to hospital.
HH: I have had one excellent experience – I went in for day surgery in a private hospital to have wisdom teeth removed. The as soon as the nurse who was admitting me knew I had type 1, she grabbed a pre-packed hypo pack which she put on a tray under my bed, and it went everywhere with me. They were well prepared for someone with type 1, and well trained – no stupid questions like “is your diabetes controlled with diet, tablets, or insulin.
DM: Great HH! There are very many good health care professionals in hospitals, and its good that you had a positive experience. Praise is short coming in the hospital system. If you have had a positive experience write a letter of thanks to the people who have provided this for you.
SR: My issue with hospitals in general is that most of the nurses I’ve come across have told me what u should and shouldn’t be doing with my diabetes. It’s not right and it’s not fair either. My response to them is well you try to live a day as a diabetic and let’s see how far you go before you want out. I want this to stop.
DM: Nurses are naturally carers SR, so often they will make suggestions that are well meaning. This ‘caring’ can sometimes be unwelcome by people who see it as interfering, especially if they have had diabetes many years. It may be helpful to ask for a diabetes educator consultation to appease their well meaning intervention: you could maybe ask ‘how do you think a diabetes educator could help me’ or ‘ that aspect of my diabetes is usually well managed; its only she I am unwell that my blood glucose level is so high – isn’t that normal when one is less active than usual, sick, and stressed (as in this situation of a hospital admission)?’ Some of my clients have also found it helpful to show health care professionals their answers to the diabetes knowledge questionnaire, as well as a copy of their diabetes self care plan (which they carry on them).
LB: The “Diabetic” food actually wasn’t… so you need to be careful. I wanted to do my own finger jab & Byetta injections but they wouldn’t let me, but no logical reason given. Can we find out why that is?
DM: LB, an option to consider is to ask the nursing staff caring for you for a consultation with the dietitian on admission. For the self injection and self testing: ask the nurse unit manager or team leader (nurse in charge) to make arrangements for this to happen. If they disagree to this, ask to see a copy of the policy that relates to this.
HH: …… where I went to ED with DKA and was told that they would wait to put me on an insulin infusion until my blood sugars came down a little!!! I was not really with it so couldn’t kick up a fuss. Thankfully a more senior dr turned up and started me on insulin.
DM: HH, for future reference might it be helpful to have a diabetes self care plan with you that includes a) a letter from your endocrinologist stating where to start with appropriate treatment in this situation, b) and/or at least their phone number for a consultation c) a copy of the hospital policy on the treatment of dka
LB: I was diagnosed type 2 on August 30 this year, only finding out due to blood tests taken prior to jaw reconstruction surgery. I had the jaw surgery on September 9, so I was still pretty clueless myself about diabetes! They were very vigilant about testing my BGLs, about 4 times a day! But, although I had informed them about my dietary needs, I noticed my diet was clearly totally geared towards post-jaw surgery, in other words, very soft mushy food. Which I did need, no way could I have chewed anything! But I was given quite a lot of custard, jelly and ice-cream, all very high in sugar. Luckily I couldn’t really eat that much anyway, even talking hurt at first! I guess it is difficult when they have to take into consideration many different factors with diet. Oh, I am allergic to onion too, and they did manage that okay. This was a very large city hospital though, and you would expect them to be able to handle these things.
DM: LB, another good reason for some pre operation planning. For people who are undergoing planned surgery it could be helpful to ask your surgeon or the pre-admission clinic to organise a) a dietitian consultation on admission b) for the endocrine team to be involved in your hospital stay c) a diabetes educator to assess the care plan on the surgical ward that you are admitted to
RH: I need to be treated as a patient with my own personal problems, diabetes, allergies and my current diagnosed health problem. I still need food and water while in hospital. I do not need counseling or arguments with hospital staff about chronic lifestyle problems I have had diagnosed by professional medical practitioners in the past that have been resolved by following those professional medical practitioner instructions. So when I go to hospital my food needs are not met. I cannot get milk in my diet because of allergies and food with allergens cannot be eaten. Suitable substitutes are not ever available. Raw vegetables, meat and water or tea ARE so the hospitalization is frustrating in the extreme. I just want plain good food without allergens and proper nutrition so I get well quicker and home sooner. Simple.
DM: RH, it might be that the procedures and policy of the hospital state that anybody with diabetes will be seen by the diabetes educator. Ideally the diabetes educator – and not the generalist nurse – will assess your knowledge and skills, and your diabetes self care plan. In my experience many people who live with diabetes have had no diabetes education. Also, I have found that information given in the past by inexperienced health care professionals may be incomplete or inaccurate. In hospital it’s a good opportunity for a specialised nurse – a diabetes educator – to help people in this situation manage their diabetes more healthily. I have found even the most knowledgeable and skillful diabetic has some room to improve. And if not, I have actually learned something from them. And of course the same for the meal planning part of the diabetes self care plan: talk to the dietitian, for they have the most knowledge and skills in this area. A good question to ask is ‘ what evidence is there relating to your advice?’
HW: In many hospitals in my experience the morning & afternoon tea trolley has little or nothing to do with the kitchen. I’m not sure if they would even get the info re us being diabetic? It would be great if low GI fruit such as apples, pears, berries, even a banana; or cheese n low GI crackers; or yogurt or nuts were options for those ‘snack times’ rather than sweet high fat biscuits.
DM: HW, writing a letter to the hospital suggesting these healthy options may have some impact. If not, writing a letter to your local member of parliament may raise awareness of this problem.
TC: General education, I swear doctors and nurses know the least, my biggest fear is they will kill me
DM: TC, I agree – it’s a real problem, the lack of knowledge around the real life issues and management of any type of diabetes. Be aware that hospital staff are well meaning in their actions and advice; however, they come in all ‘shapes and sizes’ i.e. amount of knowledge and experience in the field of diabetes. This is why I suggest to all of my clients to carry with them a copy of their diabetes self care plan as well as a letter from their endocrinologist for any hospital admission. It might be also an idea – if you have a hospital nearby that is the likely place of admission – to have something documented in your hospital file for future planning. And asking staff on admission to refer to these notes. It will depend on local policies, but it may be possible to have a copy of these notes with you also.
LWG: A better understanding of a diabetic needing to eat and not have a hypo
DM: This is also a real problem, and stems from lack of knowledge and understanding. I once had an issue with a doctor taking away the clients hypo treatment from their bedside locker. Option: write a letter of complaint if this happens to you. Option: see a dietitian on admission; ask to have meals and snacks ‘prescribed’ for you.
Consult with your doctors
Remind your doctors that you have diabetes, and ask them to discuss your usual plan, and if it needs to be adapted to the hospital admission. This is also a good time to ask that your surgeon or physician consult with your endocrinologist.
If you use an insulin pump, chances are the hospital staff will not know what it is, let alone how to ‘drive’ it if you are unable to e.g. during a surgical procedure when you are under anaesthetic.
Self Care Plan
It may be wise to put in writing how you would like your diabetes to be managed whilst in hospital, ask your doctor/s to an agreed written plan, and sign this plan prior to going into hospital, or once admitted.
Your plan might be as simple as “allow me to make the decisions about my doses of insulin, and take my own BGL’s”
Take a ‘Me First Please’ Approach
If you are using diabetes medications, it might be helpful to ask that your procedure is listed as first thing in the morning. This may make it easier for you to manage your diabetes, and also help the staff looking after you have you recover from your procedure quicker. i.e. avoid hyper / hypoglycaemia.
When Can I Eat
Quite important if you are to fast during your normal waking hours. Ask questions about fasting, when you can eat and alterations to your insulin dose.
Hospital food may not be your cup of tea.
Take your usual hypo treatment with you, and ask the staff looking after you to keep it out of any locked cupboards i.e. have it available. You may need to ‘educate’ them about why this food is important to you to have available and with you at all times.
It may also pay to have other sources of carbohydrate with you to make up your usual amount of carbs if the hospital food isn’t to your liking, or doesn’t turn up.
The Hospital Process
Nurses looking after you will more than likely have other people to care for as well. They are usually so busy that they cannot take the same care of your diabetes that you would usually do.
If you have made an agreed care plan, this plan could include you measuring your own BGL’s at the most accurate times i.e. before and 2 hours after meals. This information can expedite the recovery period by helping to choose the best doses of insulin, and achieve the best BGL’s.
Often, doctors in hospital will want to change your usual medications. They may decide to change the type of pills or insulin that you use, or your usual dosage may be changed without you being consulted.
If you are very unwell, or have undergone a long surgical procedure, you may be given intravenous insulin to control your blood glucose levels. There is an established policy regarding this, and in this situation you will have less control of what happens. However, you can still advise the nurses adjusting this insulin infusion, so ask the nurses to consult with you as they are making their decisions. You are likely to know your body and your response to insulin better than they do.
Following the surgery/procedure
- If you are well organised you will have discussed your post-operative / procedure plan with your doctor/s when preparing for the hospital admission. Your plan will depend on the procedure, the type of diabetes you have, how skilled you are at managing your diabetes and of course how long you have had diabetes. If you would like some help in designing your plan, speak with your usual diabetes educator.
- How often to measure your BGL; what to do in the case of ketones developing; what questions to ask the nurses looking after you; who to ask for if you are having trouble putting your plan into place i.e. the Nurse Unit manager or the doctor on your team etc.
- Before being discharged from hospital, make a point of connecting with your diabetes educator for advice when back at home. Keeping you out of hospital is a priority (not only for you but for the hospital), especially after a surgical procedure. Sometimes a phone call to your diabetes educator can help prevent re-admission.
- Consider reviewing your ‘sick day plan’ before your hospital admission.
- Know which services are available to you by asking to see the hospitals discharge planner before you go home.
Careful planning, being well prepared, well informed and telling all the right people what they need to know will help make your hospital stay more comfortable and put you on track for a safe and speedy recovery.