I was feeling dead chuffed (as my UK friends would say) to be published again in the British Medical Journal (BMJ) recently.(1) As part of their What Your Patient Is Thinking series, my guest essay includes what I now wish I’d known before being sent home from the Cardiac Care Unit following my heart attack diagnosis and treatment.
The articles in this medical journal series are written not by physicians or academic researchers, but by patients or caregivers, and contain messages designed to be “thought-provoking and challenging for international readers of The BMJ.” These articles are published online and in print versions of the journal. They give healthcare professionals and policy makers something to take away and put into practice, including a Summary Box for journal readers called “What You Need To Know.” Here’s how it looks:
by Carolyn Thomas
“If I’d had my heart attack in the 1950s, I would have stayed in the hospital for a month. Today, heart attack survivors can be back home in 2-5 days.
“I couldn’t wait to go home, to sleep in my own bed, amid familiar surroundings, family, and friends. But when I was sent home from the Coronary Care Unit at my local heart hospital, I was also scared that every twinge I felt meant another heart attack. I’d left behind the constant monitoring of professional experts for a home where nobody in my family knew anything about cardiology.
Life at home
“I had some written instructions about wound care and heart-healthy diets. I also had a six-week follow-up appointment with a cardiologist, but none of the conversations I had with health professionals prepared me for reality when I got home. They did not seem interested in learning about what kind of home life I was returning to. Not one person in the hospital asked me if I had anybody living at home who could help take care of me during my recuperation (or if I had anybody at home I’d need to take care of).
“I was lucky. I had both family and friends. Many patients do not.
“I wasn’t asked if I could take enough time off work to recuperate, or if I’d be returning to a stressful workplace that would jeopardise my safe recovery. It was my family doctor who recognised how much I was struggling.
Dealing with depression
“I wasn’t asked if I’d be able to afford the fistful of expensive cardiac drugs that I was expected to take each day (some for the rest of my life), or offered resources on how to get financial aid to purchase them. I had to go online myself to find financial support offered by individual drug companies.
“The stress of figuring these things out on my own caused me insomnia and anxiety. It would have been helpful if my doctors had understood my worries about transferring from hospital to home and helped assuage them.
“When I began to sink into a deep depression, I thought I was losing my mind. It was only through discovering the WomenHeart online patient support community that I learnt that this kind of new-onset situational depression in patients who have just received a diagnosis of heart disease is common, treatable and almost always temporary.
Reassurance is needed
“I would especially like to have been reassured that, although this had been a frightening event in my life, there were community and online resources that could help improve my quality of life—and might even help prevent a readmission to hospital.”
What you need to know
Ask questions: learn about the home and work environment that you are sending your patient back to
Talk to your patient’s visitors: a short chat with visiting family or friends may reveal issues that they too are worrying about. No visitors may indicate the patient may lack support at home
Reviewing a list of helpful resources such as the hospital social worker, cardiac rehabilitation programs, online patient support communities, and depression screening tools would be useful before discharge
Education into practice
How does discharge planning work in your health organisation? Does the article offer you ideas on how your organisation might better prepare people for discharge?
What role do you play in discharge planning? Does this article offer ideas on how you might better prepare patients for home?
Is there anything you will consider doing differently as a result of reading this article?
1. Thomas, C. “What I wish I’d known before my hospital discharge.” BMJ 2018; 360:k1192 https://doi.org/10.1136/bmj.k1192 (Published 21 March 2018)
Competing interests: Carolyn Thomas blogs at Heart Sisters and is the author of A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017).
© 2018 BMJ
NOTE FROM CAROLYN: I wrote much more about what heart patients tell me they wish they’d learned before hospital discharge in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (and use their code HTWN to save 20% off the list price).
Q: What do you wish you’d known before hospital discharge?