What I wish I’d known before my hospital discharge

~ Carolyn Thomas

by Carolyn Thomas   ♥  @HeartSisters   

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:

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What I Wish I’d Known Before My Hospital Discharge

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.

Going home

“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?

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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

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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).

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 Q: What do you wish you’d known before hospital discharge?

See also:

Study: 91% discharged from hospital without a written care plan

Yet another cardiac risk calculator? *

My experience with patient peer review *

Why physicians must stop saying “We Are All Patients!” *

* My other posts previously published in the BMJ

Published by Carolyn Thomas

22 thoughts on “What I wish I’d known before my hospital discharge”

    1. Hello Joan – I imagine that almost all of us feel anxious when we are admitted to the hospital – and then anxious about being discharged home where there will be no doctors and nurses to take care of us!

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  3. I’ve lived all over the country and been discharged from many cardiac units in different hospitals. Sometimes the experiences have been good, sometimes it’s been appalling. You really do need to be your own advocate, and refuse to sign discharge paperwork until your questions are answered.

    My problem isn’t unique, by any means, but it’s the opposite of what’s been described here. I have a husband who wants to make me an invalid. He keeps telling me I can’t do things that I’m perfectly capable of doing. For some twenty years now, he’s been asking me three or four times a day if I need to go to the ER. If I believed him, I would be extremely depressed.

    At least he comes to my cardiologist appointments with me so my doctor can tell him to back off.

    And I have a daughter that now thinks she’s the mother. She tries to tell me what and when to eat, where, when, for how long, and by what means to travel, when and how long to sleep, when and how to take my Meds, which Meds I should and should not be taking, which herbal remedies I should be using, what to wear for the weather forecast, etc.

    I understand that they’re concerned and I appreciate that…..I really do….but they worry about the wrong things. If the heart stops beating, life ceases, so it must take grand gestures to keep it working. They simply cannot or don’t want to accept that it’s the little things they could do that would help me to be less tired and improve my quality of life. If I let them take over my life the way they seem to want, I’d be really depressed.

    Family education needs to be about both what the heart patient cannot do as well as what the heart patient CAN do. Families need to learn to be close by to act when asked (and we MUST learn to ask) and they must understand that if they offer assistance and we say no, it’s not a personal rebuke. We just want to push ourselves a little more today.

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    1. Thanks so much, Tommie – you would likely really get a lot out of reading Dr. Wayne Sotile’s book called Heart Illness and Intimacy: How Caring Relationships Aid Recovery. The whole book is about how family dynamics affect heart patients (for better or worse!) My own daughter acted like my mother in the very early days/weeks (the first day she arrived home from out-of-town she said very sternly to me: “Don’t you EVER do something like this to me again!” (…as if I’d deliberately planned my heart attack to frighten her!)

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  4. I could have written this article word-for-word. I had a heart attack at 37 years old and, just like you, was sent home with little to no resources of how to handle life, post-heart attack.

    I agreed with everything you wrote. It was all completely spot-on. Eight years later and I still don’t feel I have the resources I need. I’m even still trying to pull myself out of the deep depression I fell into after having my heart attack at such a young age.

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    1. Wow, Nicole – 37 is way too young to go through such a frightening cardiac diagnosis! And in your case, I’m betting you were the first person in your entire social circle who had become a heart patient, meaning you likely had even less practical support than much older women might have. (Interesting research on this kind of diminished support in younger women here, FYI).

      Did you know that WomenHeart has a free online support community just for younger women living with heart disease?

      It’s also not too late to make an appointment for yourself with a therapist, counselor, pastor, other mental health professional to help you gain some perspective on everything you have gone through. Best of luck to you…

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  5. I have not had a heart attack, but have been through 2 cardiac caths and have 2 stents, plus last month a brand new diagnosis of atrial fibrillation.

    I’m almost 61 and my kids are 32, 29, and 20; 2 still live at home. Sounds like I would have lots of help, but no — while my husband, a heart patient himself, is super supportive and tries to be there for me, he does work full time, and my kids are absolutely clueless and sometimes seem a lot less than sympathetic. One even confessed to just feeling angry at me after the second stent for not taking better care of myself!

    After the afib episode, I decided it’s time to have “the talk” about end of life issues. I told my kids they needed to learn everything they could about heart disease because now that diagnosis hangs over their heads too. Young adults and teens totally do not get an older parent’s health issues nor do they think anything of the sort will ever affect them. They think they’re young and invincible. I guess we all think that in our youth.

    How does this relate to this article? I wish hospitals could especially do educational forums for teens and older kids who must deal with a parent’s heart disease diagnosis. I’m doing pretty well but I do get very fatigued and I don’t think my family understands just how tired I get — it’s a unique kind of fatigue I never had before the first stent, but maybe I’m just getting older too, haha.

    Maybe sitting a whole family down pre-discharge would help, but perhaps that’s totally unrealistic of me to think this, given that many patients themselves don’t even get any info.

    After the first stent, in preparation for discharge, I did have someone come in to ask if I had help and to talk to me about cardiac rehab, and that was all good. With the second one, I was pretty surprised at how fast they discharged me and only later realized how little information they had given me — presumably because I’d been through it all before, I suppose.

    With the afib, where I was in ICU overnight, I was confident enough as a patient to insist that I would not take any new medication or have any more testing until I had talked to my own cardiologist. But nothing had prepared me for the depression, no one has ever said anything about that.

    Thanks Carolyn for another good blog post!

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    1. Meghan, you bring up an important point that’s common in so many families, which is all about expectations. We expect our families to be loving and supportive and caring, while at the same time, our families expect us to be like our old selves pretty darned quickly.

      In fact, they want and need us to feel better so that they do not have to worry about us – hence their apparent impatience when we don’t sproing back to our usual perky selves!

      The younger they are, the harder it can be (barring personality/empathy differences) for children to ‘get’ what living with a chronic and progressive diagnosis like heart disease actually feels like. “Enough about you and your heart problems – What about ME?” is often their implicit response.

      Yet such reactions can feel so hurtful! Cardiac psychologist Dr. Wayne Sotile describes it this way: “Family reactions either help or hinder the patient’s recovery.” I recommend his excellent book called Heart Illness and Intimacy: How Caring Relationships Aid Recovery. I’ve written lots about his work – e.g. here.

      I think you’re probably right: sitting the entire family down pre-discharge in the patient’s hospital room is unrealistic (given that staff are not even able/willing to do this for heart patients themselves in most hospitals, never mind engage in any type of family therapy!)

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    1. That’s a reasonable question. There is certainly a growing body of research suggesting that lack of appropriate discharge planning is, not surprisingly, a serious problem for patients (one study suggested that 91% are discharged from hospital without a written care plan). Yet official responses to those kinds of shocking findings often focus on issues like the possible association with costly hospital re-admission rates. I’d feel more hopeful if the hospital’s focus was on the misery and fear of the patient being sent home without appropriate transition planning in place, instead of on how expensive 30-day re-admission is…

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  7. As always, Carolyn, you are spot on….

    I had open heart surgery to repair a mitral valve. Atrial fibrillation had worsened my heart failure due to the badly leaking mitral valve and my Cardiologist refused to refer me to a heart surgeon.

    The procedure was very hard on me and I was in ICU for 5 days as my heart wouldn’t beat on its own and needed chemical assistance.Then I was stepped up a floor to the cardiac floor for a few more days and then sent home…barely able to breathe, let alone walk more than 5 feet….when I got home, my husband put bar stools along the hallway so I could rest on the way to the bathroom and bedroom.

    I had severe short term memory loss…I could not remember how to knit even though I had been a knitter for over 50 years. (That was due to the length of time I was on the heart-lung machine.) My ejection fraction was under 10. If I had not had home care nurses I doubt I would have made it. They recognized my depression and arranged for a therapist to come help me.

    Here I was, a retired therapist and didn’t recognize I was severely depressed and anxious. The docs didn’t warn me I wouldn’t be able to lay flat so the first night I was frightened because I couldn’t breathe laying flat and the pain was incredible….I had to get my hubbie to help me get up and find pillows to lift me up.

    I felt totally alone until the home nurses showed up and normalized what was happening and brought hope when they walked in the door. They badgered the cardiogists office when my blood pressure dropped to 68/48 and had no answer back for 3 days…they were frantic and fighting for me. There was no way I could have fought for myself back then.

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    1. You hit the nail on the head, Sunny. When those home nurses reassured you by “normalizing” what you were going through, and recognizing your depression symptoms, and fighting for you (and why is it even necessary for nurses to have to “fight” with a cardiologist’s office to get a damned call returned?), it meant you were no longer quite so alone.

      And that can be an indescribable relief….

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  8. Everything you said rang true and then some. I was ill prepared to go home since I hadn’t even walked outside my room after 4 days!! The overwhelming side effects from the new drugs -since I had never been a heart patient before my new STEMI heart attack 🙂 – were causing awful pain and fluid buildup and not mixing well with my diabetes meds.

    In the next few days I had to trek to doctors visits, xrays, and more labs at the hospital when I was so out of breath!! Thank goodness for the home health nurses who kept in touch with my doctors and told me what to do.

    To say I was overwhelmed, is a big fact…. I had to tell my primary doctor how depressed I was since no one ever asked. And get help with my anxiety over how weak and out of breath I was…

    I survived but it could have been a lot easier had they prepared me for the problems I would face or even ask …

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    1. Chris, I simply cannot get over this part of your story – that you were discharged home (I’m assuming nobody in your home was a medical professional!) despite not walking outside of your hospital room for four days?!?! Are you kidding me?! Those home nurses likely saved your life. No wonder you felt anxious and depressed….

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  9. Yes, to all of these things. If I hadn’t been the kind of personality I am, take no prisoner researcher, I would have been back at the emergency room daily! The longer I spend gathering up my new normal the more aware I become that I am exceedingly lucky to be able to adjust to life’s bumps.

    Still, a little warning would have been great. Fortunately I found Heart Sisters and Heart Association support. Coupled with researching every pain I could describe, I feel pretty confident I will neither lose my mind or overcompensate with 911 calls.

    Life is getting better… thank you all for helping me accomplish what medicine alone could not! Having a heart attack is clinical, moving on with life is a function of personal fortitude. Talking about it is part of rehabilitation.

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    1. Hello Carol – couldn’t have said it better myself: “Having a heart attack is clinical, moving on with life is a function of personal fortitude!” And that’s where so much of the problems lie (because very few of us when we’re feeling frightened and overwhelmed can express much of that personal fortitude in the early days and weeks!)

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  10. Excellent, and every doctor, and everyone involved in patient care needs to hear this. Congratulations on using your voice in another forum.

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  11. I spent 5 days in the Dartmouth-Hitchcock Clinic in 1981 undergoing intense testing to help various docs try to figure out what was wrong with my heart. Turned out the stress of a bad marriage was literally killing me — but that was what I had to go home to.

    I felt utterly deserted, totally alone, no idea how to cope. A friend who was also an MD at Hitchcock smiled and said “It’s the same as post partum. We see it all the time. It’ll pass.”

    It did. But why didn’t anybody tell me about it? If the docs were aware of it, why wasn’t there any support system? As it was, as soon as I could I hit the library and began learning as much as I could about heart disease. That learning continues even now, because I firmly believe that — at least, for me — knowledge is the antidote to fear.

    I also took stress management classes at Hitchcock and learned practices that I still use today. Still, today, 30+ years later, women are sent home ill-equipped to manage what could so easily be managed with support and knowledge.

    Boo hiss!

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    1. Beautifully put, Sandra – although it’s still distressing to contemplate that women (and men too, of course!) are being sent home “ill-equipped to manage what could so easily be managed with support and knowledge”. It’s almost as if physicians/nurses/hospital staff believe that a person’s life finishes upon discharge; that might explain why nobody told you (or me) what to expect when we got home.

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