How dangerous is it to worry?

Posted on April 7, 2016 by mariahagglund

This is a question that has been spinning around in my head for some time now. I’m on the train right now, returning home after 3 fun and inspiring days at the Vitalis conference in Gothenburg. One issue that we however kept returning to in different sessions, is this eagerness to protect patients from worrying.

When we discuss patients’ online access to their medical records healthcare professionals are concerned that it will cause worry when patients don’t fully understand or when they can read information that really is worrying (perhaps lab results that are not normal, or evidence of illness). It’s even discussed that healthcare professionals will keep certain information out of the medical record in order to protect the patient from worrying.

So, I’m wondering – how dangerous is it to worry? I realize that there are people who worry TOO much, and who’s lifes are negatively affected by this worry – but most of us are worried from time to time, right? Whether it’s about the loan on the house, paying rent, meeting that deadline at work, breaking up with your boyfriend or passing an important exam – we worry. It’s not a great place to be in – but it seems a normal reaction to a stressful situation. And of course we worry about our health. But healthcare professionals are often very eager to protect us from “unnecessary worry”, and they will keep their early hypothesis from us (if it’s not cancer – why cause unnecessary worry?). But is that really fair? Is it not our right to be able to prepare for potentially bad news when it comes to our health too? If the risk is very small – that can surely be communicated too. And trust me – when it comes to our health, we worry regardless – and we rarely seek healthcare without being already at least a little worried.

In a recent Facebook conversation, Cristin Lind (among many other things author of the great blog Durga’s toolbox) pointed out that sometimes it can be even better to acknowledge a person’s worry and ensure that all concerns are addressed. This really resonates with me. Sometimes when you seek healthcare, you’re worrying as much about whether they will really take you seriously and properly investigate your problems, as you worry about your actual health issue. Having someone acknowledge that there is cause for worrying and that examinations are needed to exclude serious conditions can be a relief. If it turns out there was no real cause for alarm – that’s only good news, and if the news are bad, at least you had some warning.

On good days – I think that healthcare professionals are trying to shield us from as much suffering as possible by filtering out information that could possibly make us worried. I’m still frustrated though when faced with this paternalistic approach.

On bad days (like today) – I can’t help but think that healthcare professionals are really protecting themselves from having difficult conversations, why should I bring up cancer if it turns out not to be? And if I say that I’m taking these tests to rule out a serious condition, the patient will surely be much more eager to find out the results as soon as possible – which can cause extra phone calls and add to my work load. I know I sound cynical, and I hate to be, but some days I am.

I would love to hear your thoughts on this;

  • if you’re a patient or caregiver, do you want to be protected from unnecessary worry?
  • if you’re a healthcare professional – how do you address this in your work practice and why?

And is there any good research on the pros and cons of different approaches to handling worrying information?

Please comment!

[post 29 in the #blogg100 challenge – yes, I’m way behind, but I’ll keep using the hashtag and linking to my posts anyway…]

 

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Pneumonia or Pneumonitis?

Posted on March 29, 2016 by mariahagglund

Sounds pretty similar, right? What’s the difference? you might even ask. It’s a world of difference in terms of cause and treatment, at least that’s what I’ve learned during the course of this afternoon. With some help from my friends at Smart Patients of course.

Afinitor – the kidney cancer drug we’ve come to put all our hopes into – makes the patient very sensitive to infections, and developing a bacterial pneumonia is not uncommon. If you get a bacterial pneumonia it needs to be treated with antibiotics. If you have metastases in the lungs making you cough and be short of breath to start with, it can be quite difficult to spot when a pneumonia sets in though… a fever is therefore an important warning sign.

Pneumonitis is a general term that refers to inflammation of lung tissue. Although pneumonia is technically a type of pneumonitis because the infection causes inflammation, most doctors are referring to other causes of lung inflammation when they use the term “pneumonitis.” Pneumonitis that is not caused by bacteria cannot be treated with antibiotics. Of course, pneumonitis is a common side effect of Afinitor too, and if you get a “non-infectious pneumonitis” you’re rather prescribed steroids to control the inflammation.

So, right now I’m sitting here hoping (with all my fingers crossed) that the physicians at the hospital where my father is currently admitted have communicated with the oncologists and really checked properly that my father has pneumonia and not pneumonitis since they’ve prescribed antibiotics. If I had known about this difference when we were at the hospital earlier today I would have asked. They did not say. If they had, I wouldn’t be worrying right now.

PS. Imagine if we could just log into his electronic health record (as I can do with my own in Uppsala) and read lab results and notes – then perhaps all my questions would be answered. Perhaps I would even be able to see traces of ongoing communication between the oncology department and the general ward.

Or the physician might just have explained the reasoning behind the treatment choices to us…

Or both.

[post 28 in the #blogg100 challenge]

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Is blood glucose 30 really high or really low?

Posted on March 29, 2016 by mariahagglund

Did I mention my dad had a blood glucose level of 30 the other day? We were really freaked out because it was so HIGH – and the homecare nurse immediately came and administrated insulin. Since I knew high blood glucose could be a common side effect from the Afinitor cancer medication he’s taking, I logged into my Smart Patients community (while we were waiting for the nurse) to hear if anyone else had experienced such extremely high level and what had been done about it.

Blood Glucose Post

The answers I got was however not really what I expected…

Hopefully you have already heard back from the nurse. 30 is considered a critically low blood sugar. He needs glucose immediately. If he can swallow, please give him orange juice with sugar. If he can’t swallow, call EMS (emergency medical service) immediately. Low blood sugar is more dangerous for the brain that is why he is so lethargic

And many more with the same message, e.g.:

His blood sugar isn’t high. It is horribly low. You must give him something very sugary immediately. With a blood sugar of 30, he can become unresponsive.

That’s when I realized we probably don’t have the same scale of measuring blood sugar in Sweden as they do in the US, which was confirmed by the following information that a fellow kidney cancer patient who also happened to be diabetic found and summarized for me:

according to wikipedia at https://en.wikipedia.org/wiki/Blood_sugar

“The international standard way of measuring blood glucose levels are in terms of a molar concentration, measured in mmol/L (millimoles per litre; or millimolar, abbreviated mM). In the United States, West-Germany and other countries mass concentration is measured in mg/dL (milligrams per decilitre)”

whereas according to
https://web.archive.org/web/20110706100159/http://www.abbottdiabetescare.com.au/diabetes-faq-measure-units.php

“Sweden uses mmol/L”

According to
http://www.diabetes.co.uk/blood-sugar-converter.html

“30 mmol/L converts to 540 mg/dL”

Assuming that all the information above is correct, I am truly glad the nurse came and administered insulin. 540 is sky-high for USstandards aka 90-110 ideally.

So, a couple of take home messages here;

  • It’s important to be specific and have all the information when discussing health issues. I just wrote 30 and didn’t include the scale mmol/L – which made a huge difference!
  • Even basic measurements are not standardized internationally, which can make it challenging to communicate when travelling – or when looking for information online. All the more reason why patients (and caregivers) need access to correct and detailed information about their own health in order to be able to assess relevance and correctness of other sources.
  • e-patients are extremely helpful and will even do the searches for you to help explain why blood glucose 30 can be either extremely HIGH or extremely LOW – thank you!

[post 27 in #blogg100 challenge]

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Fragmentation of care and patient safety

Posted on March 27, 2016 by mariahagglund

My father does not have diabetes. He has stage 4 kidney cancer though, and has been eating Afinitor for a few weeks. A frequent side effect of the medication is a rise in blood glucouse – which should therefore be monitored. His cancer medications are handled by oncologists at a nearby hospital, but he also receives palliative care at home, and a home care team of nurses help with e.g. taking blood tests. For some reason the blood glucouse levels haven’t really been measured recently, the palliative care physician wrote a note in the binder we keep at home on the 22nd that they should be measured… but they haven’t been.  During the past couple of days my father has been feeling a lot worse – tired, no appetite, no energy.

Yesterday was Saturday, and we were getting really worried – he kept falling asleep and could barely come downstairs. Of course you can’t reach the oncologist or the palliative team during weekends, but the homecare nurse made a house call. She however did not see any connection at all between his bad state and the medications – it was all due to the cancer. For us, having seen him deteriorate so quickly it was hard to accept though. So we started reading up on all the side effects again, and my brother-in-law who is diabetic suggested it might have to do with the blood glucouse levels. He brought his device for measuring blood glucouse, and the measure was really high. We called the nurse back, she checked with an on-call physician who prescribed insulin on the spot, and a different nurse came to administer it (after having double checked his value of course). Today, my father is a whole different person, and we’re now measuring his levels twice a day and give insulin when needed.

A few reflections:

  • Healthcare is very fragmented and despite having great support from different actors, lack of communication and awareness of medication regimens and potential side effects can put patients at harm
  • Having access to the right information and the right equippment can be essential for patients and caregivers
  • It’s a challenge to communicate with health care professionals about what worries you as a caregiver – without “hard evidence” it can be quite difficult to be taken seriously. We are after all not the experts…

So, we’ll call the oncologist first thing Tuesday morning (since it’s still a public holiday tomorrow) to hear what they have to say about his blood glucouse because the homecare team will most certainly not have communicated this to the oncologist. We will also check again about the diuretic dose the palliative team doubled last week – since the oncologist is worried about his hypercalcemia, which of course can be worsened by diuretics…

[post 26 in the #blogg100 challenge]

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Do new mothers doing a PhD get enough support?

Posted on March 25, 2016 by mariahagglund

That’s the question asked in a piece on the Times Higher Education web site. I was actually interviewed over the phone for this article, since the author had read my post on PhD parenting!

I have a couple of comments on the piece in Times Higher Ed. First of all, I’m a bit tired of the rethoric around MOTHERs as being the sole caregivers for their children. It’s a shared responsibility (if you’re not a single parent of course!) and needs to be acknowledged as such. I wasn’t lucky enough to “have supportive husband”, I have an equal partner who takes his responsibility for our children as seriously as I do. This is essential in any relationship, but perhaps even more so when you are pursuing a research career.

In Sweden, we have 480 days of paid PARENTAL leave, whereof 390 are at 80% of your income, and the remaining days you get 180 SEK/day (which is honestly not that much). The days are split equally between the two parents (if you have shared custody), but one parent can choose to give of his/her days to the other (unfortunately the majority of days are still taken by women). 90 days are however non-transferrable – this has been done in an effort to ensure that fathers also use the parental leave. I’m definitely in favour of this! If you share your days equally you also get a bonus – which is great! Me and my husband have shared parental leave more or less equally – but he has definitely taken a big responsibility – working part time until recently so that I could focus more on my work.

Also, it’s not IMPOSSIBLE to do a postdoc abroad – but a bigger challenge when you have children of course, and naturally not ALL funding applications require this. The mobility often required by researchers is however definitely a challenge when you’re just starting your family. I have been lucky enough to be able to find stable work close to home – but it’s often a struggle.

I didn’t feel pushed to return to work when my baby was 4 months – I wanted to because I’m very passionate about my work and I wanted to complete my PhD as soon as possible. This is of course very personal though – for me, having a baby while doing my PhD was great; flexible work hours, job security, I could do lots of stuff from home (submitting papers e.g.) – it was a lot tougher with the second child when you already have a toddler to care for too. But I had a very supportive supervisor/boss and great co-workers. But finding work/life balance is tough on anyone aiming for a research career – and if we put all the responsibility on MOTHERs doing their PhD we reinforce this as being a female issue. I encourage all FATHERs doing their PhD to make sure to stay at home with their babies, to pick up from daycare, to take their responsibility as parents!

MINOLTA DIGITAL CAMERA

May 2007 – my daughter 7 months old. My husband worked in the morning, we met on his way home, he took the baby and I spent the afternoon at the office working.

That said, I do still feel guilty when I have to leave early or arrive late due to picking up or dropping off kids at school (a problem accentuated by my 1 hour commute to work), and I do believe we have lots of work to do to make PhD students comfortable and confident with starting a family. And I realize that Sweden is exceptionally well suited for this. And I’m also fully aware that these problems are still much greater for mothers than for fathers – I just think it really shouldn’t be!

End of today’s rant – stay tuned for more…

[post 25 in the #blogg100 challenge]

 

 

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Navigating unknown cancer waters

Posted on March 24, 2016 by mariahagglund

I downloaded this report “På okänt cancervatten” a while ago, but I’ve only been able to read short sections at a time. Not because I haven’t had time to (which is otherwise a common reason for my fragmented reading habits) but because it hurts. Navigating unknown cancer waters has been part of my life this year, since my father was diagnosed (or rather the diagnosis process began) just before Christmas 2015. And it’s a hard journey, that requires a special set of tools to navigate.

The study was performed by Ulrika Sandén and can be downloaded here.

Ironically, I had been working with a group of lungcancer patients myself to capture their experiences and the problems they ran into as part of the research project Mina Vårdflöden, and had published some of the results of this work earlier in 2015 in a paper called Living with Lung Cancer – Patients’ Experiences as Input to eHealth Service Design, but frankly living an experience and hearing about it are two very different things. Most of the results from our study however I am all too familiar with right now; the waiting for diagnosis, the lack of communication with healthcare, the lack of coordination between healthcare professionals, and the lack of feedback channels to healthcare. I’m bound to return to some of these topics in later blog posts.

Returning to Sandén’s study, they divide the results into 3 sections;

  • Inner navigation [Inre navigering] – about handling questions relating to hope and identity
  • Relational navigation [Relationell navigeringskonst]- where the patient needs to handle their illness in relation to others (e.g. family members, friends and other patients)
  • Care-related navigation [Vårdrelaterad navigering] – with focus on the patients meeting with healthcare

In my own work within health informatics, I have definitely focused most (almost exclusively) on the last of these three navigational types – and this is also the part of the report where the authors identify the most room for improvement (at least in terms of identified action points). In my experiences as family of a cancer patient, I can relate to all of the three navigations that require a whole new set of skills and huge amounts of energy. With my background, I still tend to focus most on the latter – that’s where I feel I can be most useful, and I guess this is part of a coping strategy as well.

Some of the quotes from the study stands out.

“I didn’t know I needed anyone until she was there.”

I remember the first time during our cancer journey that a healthcare professional paused, looked at the four of us in the room (me, my parents and my sister) and asked how we were all coping with this emotionally, and we all broke down in tears. This was 8 weeks after we first found out about the tumours in his lungs (which turned out to be metastases from the original kidney cancer tumour).

In our own study with lung cancer patients, a quote that has often haunted me during these past months is this.

“… it had been 3-4 months, I think, when they put the needle
in my arm [for chemotherapy], and then I felt; now I will get
better, now I have received help!”

I believe we had the same feeling when treatment finally began after 8 excrutiating weeks of diagnostic examinations and discussions of different treatment options. Finally, we have received help.

In Sandén’s study the focus was not on the diagnostic process, but it is identified as a future research area of importance. I couldn’t agree more, and based on both my previous research and personal experience I have plenty of ideas for eHealth services that can facilitate this process!

[post 24 in the #blogg100 challenge]

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An alternative career

Posted on March 23, 2016 by mariahagglund

You know how an academic career can be quite uncertain, dependant on short term contracts and hard to obtain research funding? So you need a plan B. This is mine – I’m an excellent travel organizer. If anyone would be willing to pay me for my services I’d make a fortune!

Everything in order for our trip to Nice – 3 generations, one apartment.

 

[post 23 in the #blogg100 challenge]

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