by Carolyn Thomas ♥ @HeartSisters
The freshly-diagnosed hospital patient often goes from the shock of being hospitalized to the shock of being sent home before we’re feeling quite ready to return there. .
As I wrote in the British Medical Journal (BMJ) about my own hospital discharge after surviving a misdiagnosed heart attack:
“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, 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.”
Dr. Wayne Sotile, author of the terrific book Thriving With Heart Disease, calls this post-hospital discharge period the “homecoming blues”:
“You’re now home from the hospital, and you’re expected to surf a bewildering wave of emotions, anxieties and procedures. No longer are nurses and doctors checking, monitoring and calming you. Now you have to decide what you can and cannot do, and you may feel under-qualified for the job.
“And women’s homecoming can differ from men’s in a very important way: they typically get far less support. Women are more likely than men to insist that their families not be inconvenienced for the sake of their rehabilitation, resulting in family dynamics that can often be less oriented towards the patient’s needs.”
We know that how patients are discharged from the hospital has far-reaching effects on our recuperation at home. Yet we also know that the delivery of hospital discharge instructions is often rushed, so we may go home without knowing enough about our diagnosis, our treatment or even our follow-up care. Despite their importance, “hospital discharge summaries are often poorly constructed, incomplete, delayed, misdirected or unhelpful.”(1)
Cardiologist Dr. Harlan Krumholz at Yale University warns that inadequate discharge planning can also lead to patients being re-admitted to the hospital – both a costly expense and a frightening experience:
“Best we can tell, hospital re-admission has to do with largely unmeasured hospital events, including patient preparation for discharge, transitional care, coordination and collaboration among providers, communication between patients and their clinicians and others, and even perhaps the degree to which errors or poor nutrition or inactivity or poor sleep occurred during the hospitalization.”
For example, he notes that most hospital patients:
- are commonly deprived of sleep
- experience disruption of normal circadian rhythms
- are poorly nourished
- have pain and discomfort
- confront a baffling array of mentally challenging situations
- receive medications that can alter cognition and physical function
- become de-conditioned by bed rest or inactivity
In other words, as he explains,
“We are not really taking into account what happens to people when they are hospitalized. I don’t think hospitals are understanding this as a strategy to improve recovery and reduce re-admission.”
It also makes sense that the more severe your medical crisis has been, the more important the transition from hospital to home becomes. Researchers have found, for example, that two thirds of seriously ill patients who experience an intensive care unit (ICU) stay have “persistent physical, psychological or social problems”. Researchers in Denmark recommend this ICU discharge strategy(3):
These professionals may include cardiac social workers who provide emotional support and crisis counseling for both hospitalized heart patients and their worried family members. Social workers can also offer practical assistance with discharge planning or with arranging post-discharge community resources, helping to facilitate the safe transition between hospital and home or another care setting.
My hospital did have a cardiac social worker on staff – but she was just one person to care for the heart patients in:
- 4 Pacemaker Clinic beds
- 4 Open Heart Surgery Admission beds
- 7 CVU beds (Cardiovascular Intensive Care Unit)
- 8 CCU beds (Coronary Care Unit for non-surgery/unstable/critically ill patients)
- 14 Open Heart Surgery Recovery beds
- 24 Cardiac Short-Stay beds
- 24 Medical Cardiology (arrhythmia) beds
As is depressingly obvious, that lone cardiac social worker was kept very busy single-handedly juggling some of the 84 other heart patients on the cardiac floor. Meanwhile, I was being told: “You can go home now!” Inadequate hospital staffing of important support professionals basically meant that I didn’t have a hope in hell of getting to spend any time with that one cardiac social worker before I was discharged home.
I didn’t actually meet her, in fact, until weeks after my hospital discharge when she turned out to be the guest speaker one evening at the 7-week Heart-To-Heart lecture series that I attended for freshly-discharged heart patients and their family members. After I listened to her wonderful presentation on Psychosocial Issues for Heart Patients, I wished that I could have met her at my bedside in the CCU back when I’d felt so afraid and so overwhelmed.
Some hospital discharge protocols may be looking up since those days. Consider the new Discharge Lounge at Victoria’s Royal Jubilee Hospital – the same hospital, coincidentally, that discharged me after my heart attack, and where I’d worked in hospice palliative care since the year 2000. This new lounge seems like a huge improvement compared to my own experience there, and one more helpful step in the right direction when it comes to treating patients like real live people – not just the M.I. taking up space in Bed 8.
This Discharge Lounge offers a safe, supportive atmosphere where discharged patients and their family members can transition from 24-hour professional supervision to that often-scary car ride home. As the RJH describes it, the lounge is staffed by a nurse who can arrange patient transportation if required, fax prescriptions to the patient’s local pharmacy, answer questions, and provide patient and family with information before they all leave the hospital.
It’s an important – yet under-valued – transition that every hospitalized patient deserves before heading home.
♥
1. H. Newnham et al. “Discharge communication practices and healthcare provider and patient preferences, satisfaction and comprehension: A systematic review.” International Journal for Quality in Health Care, Volume 29, Issue 6, October 2017, Pages 752–768.
2. Harlan M. Krumholz. “Post-Hospital Syndrome — An Acquired, Transient Condition of Generalized Risk”. January 10, 2013. New England Journal of Medicine; 368:100-102.
2. Svenningsen, H. et al (2017), “Post-ICU symptoms, consequences, and follow-up: an integrative review.” Nursing in Critical Care, 22: 212-220. 2017.
Image: RPerucho, Pixabay
Q: How would you describe your most memorable hospital discharge experience?
♥
NOTE FROM CAROLYN: I wrote more about hospital stays and discharge planning in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University, 2017). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon. If you order it directly from Johns Hopkins University Press, you can use their code HTWN to save 30% off the list price.
♥
See also:
–Convalescence: the forgotten phase of illness recovery
–When you’re about to become a hospital patient
–The hospital discharge race: is sooner always better?
–Handling the homecoming blues: the third stage of heart attack recovery (more from Dr. Wayne Sotile’s four stages of recovery)
Heart Sisters 
Coordination always seems difficult, especially now and the term “check and verify” is my mantra now.
I was quite surprised that there was no folder/binder for me to read/have that would have saved them time and questions, or even a pre-op, post-op class, much like maternity care and planning.
A PR intern could interview and draft one for the cardiac team I would think.
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I love those suggestions – especially using maternity care/planning as the template. No new parents would leave the maternity ward without a whack of information about infant care (e.g. in our province, our free book is called “Baby’s Best Chance” – given out to every new Mum).
The more basic information we can arm patients and their families with (whether on the maternity ward or on the cardiac ward!) the better-prepared they will be when strange new things happen at home. And having something in writing means we can read – and then re-read – the specific parts we need to learn more about at our leisure.
Take care, stay safe. . . ♥
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An important topic. A year ago I had heart surgery; all but one of the nurses were amazing. Once home, I was told to contact the surgeon’s nurse coordinator, who minimized and dismissed my concern about a troubling cough that became severe.
I had to contact my own providers to get help. Then the nurse had the audacity to finally call, shock me with her verbal abuse and hung up on me. Total nightmare.
Took months to recover from the trauma. Still amazed it didn’t undo the good done by the surgery.
Thanks for your post.
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Good grief! She hung up on you?!? I hope you were able to report that unprofessional behaviour at the time. Unfortunately treatment like this can happen when we’re feeling absolutely vulnerable and afraid and NOT at all able to be our own best advocate. I also wonder whether that nurse would have verbally abused and hung up on you if you’d been a male patient.
No wonder it took you months to recover. If only healthcare professionals (and I use that term loosely in this case!) were remotely aware of how damaging this kind of behaviour can be at at time when we’re reaching out for their help.
I hope you’re doing much better now, Grace. Take care, stay safe. . . ♥
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After an emergency quintuple bypass open heart surgery in 2010 at age 49, my pain was excruciating, yet I was grateful to be alive and that all had gone well during the 8-hour surgery.
Nonetheless, I felt shocked when – on the third day after the surgery, I was informed that I’d be discharged the following day. I did not feel one bit ready to go home, and when I mentioned it to the cardiac nurse, she told me that I’d be safer at home because in the hospital I ran the risk of getting a Staph infection.
Once home, neither my family nor I knew how to handle my care because I was still in a lot of pain, and when my husband and my sister helped me to lie down on my bed, I remember screaming like a baby, because I was not ready to lie flat on my bed; my scar was still tender and my sternum felt like it was going to break apart again.
This was only one of the traumatic experienced I felt during my first days at home after my hospital discharge. I felt that I needed at least another 3-4 days under professional hospital care. And not to mention the need of emotional support which I did not have, which motivated me to search it online. That’s where I found WomenHeart Connect on Inspire.com, where I virtually met women with heart disease sharing their experiences.
During my open heart surgery, lots of nerve endings were cut inside my chest, causing my recovery process to take longer due to the extreme pain caused by the regeneration of nerves. On the virtual support group, I was able to find answers to my desperation, and that’s how I was also connected to WomenHeart, and a year later became a WomenHeart Champion.
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Hello my heart sister Yaskary!
What a horrible ordeal you went through at home after your hospital discharge! This was an example of how bed control (“You’re in a bed. We need that bed!”) becomes more important than patient care. Unfortunately, patients don’t get to dictate to hospital staff how long they would like to remain in the hospital.
But this also demonstrates a lack of pre-discharge planning from your hospital staff. Teaching open heart surgery patients AND THEIR FAMILIES how to safely get in and out of a bed, roll over, sneeze, cough, and move around is a critically important part of any post-op discharge plan for heart patients. It’s important both physically and psychologically. Your family members who were not trained to properly help you must have been equally traumatized by your screams. A nightmare!
If the risk of hospital-acquired infection was as real as the cardiac nurse described (and this CAN be a genuine danger to in-patients – I’ve seen entire wards infected by drug-resistant ‘super bugs’ when I worked in a hospital) – it’s also an argument for arranging either regular home care visits or convalescent facilities. This appalling lack of discharge planning seems to suggest that a patient’s need for appropriate care ends as soon as they boot you out the hospital door.
The only silver lining in this hellish experience for you was discovering the WomenHeart Connect online support community and ultimately being trained as a WomenHeart Champion – as I did, too.
Take care, stay safe. . . . ♥
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Such important points. Before my Metastatic Breast Cancer diagnosis, the only other times I’d been hospitalized was to have babies.
There are so many struggles linked to being in the hospital and leaving. Such trauma that is unrecognized and ignored.
Thank you for your post!
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Hello Abigail – I think hospitals feel like relatively foreign places for most people, but when you’re there for serious medical treatment (like for cancer), everything can seem scary and overwhelming. Ironically, it’s a bizarre reality that a hospital experience that’s absolutely awful for patients is often absolutely routine for the people who are doing the care (that’s the unrecognized/ignored trauma you mention!) – as I learned after being admitted to the same hospital I’d worked in for years! More on that here.
This may help to explain how, when doctors or nurses become patients, they are so often gobsmacked by how dreadful being sick can actually be. I don’t recommend that all medical students should become sick enough to be hospitalized, but that experience sure would produce med school graduates with an entirely new sense of compassion and empathy.
Take care, stay safe. . . Happy New Year to you! ♥
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How timely for me! Just home from the second and third hospital visits of my long life, the third being a short return for fluid accumulation of unknown origin, and the second for SAVR (Surgical aortic valve replacement). The last hospitalization, I timed my longest uninterrupted sleep period at 2 hours, 40 minutes.
Having been aware of my eventual need for aortic valve replacement, I have followed heart issues for some time, including your blog and Dr. Krumholz. As you’ve written elsewhere, I am reading the word “heart failure” on the discharge documents and hearing it as well.
Other than these issues which your blog has helped keep me abreast of, the surgery, recovery and rebuilding my stamina go well.
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Good grief, Ray – 2 hours, 40 minutes of uninterrupted sleep? How are patients supposed to emerge from such treatment in any state of healing?
I’m so glad to know that your recovery and rebuilding are going well. Take care and good luck to you… 🙂
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I am grateful that my heart attack occurred before the COVID appeared. I can only guess the care that patients are not getting now.
I was able to take my IV tree to the bathroom less than 6 feet away. But when discharge happened, I had not been taken for a walk around the ward. I went from bed to wheelchair to car and home. The first time I walked any distance was into the house, into my living room and collapsed into my barcalounger.
And you are right,, where was the convalescence?
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Where is the convalescence indeed!?!?! Sadly, this is an important but now-essentially discarded concept in medicine, as I wrote more about here.
Chris, your story of not being walked around the hospital ward before being sent home is a good example of how hospital discharge is now far more about bed control (“You have a bed, we need that bed!”) and NOT patient care. That’s appalling!
Take care, stay safe and Happy New Year to you!
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I was very interested to hear about your discharge lounge as a segway for discharged patients on their way home… even being staffed with an RN.
In the hospitals here, that I have been associated with, the “discharge lounge” was staffed with a volunteer and it was where patients were sent to wait for their ride home if it was taking too long and the hospital needed their bed.
Your version sounds much more helpful!
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Hi again Jill – I’ve heard of these so-called “discharge lounges” that are basically indoor parking lots for patients taking up bed space (as your first three examples – below – illustrate so clearly!)
* sigh! *
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You know….as I perused in my mind my numerous hospital discharges, I realized that I only remembered the problematic ones: like the time I spent three days in the hospital on cardiac monitoring to test a new medication that could have serious arrhythmias as a side effect, and then when I was discharged, no pharmacies had the drug in stock to fill the prescription. . .
Or the time I had a stent placed and I sat waiting an hour at the hospital pharmacy for my essential clot-preventing medicine Plavix, then was told it would be at my local pharmacy. I went to my local pharmacy and they had no knowledge and I had to call my cardiologist and drag him out of his exam room to “fix” the situation. Meantime thinking my stent would clot any minute.
Probably the most memorable discharge was leaving Mayo Clinic in Minnesota 5 days after my re-do open heart surgery, stay in a hotel room 2 nights and then fly home to Denver. I meditated all the way home.
But just the thought of being 1000 miles away from the surgeon that saved my life was terrifying. Knowing that if I had any complications I would have to go to the Hospital where my first open heart surgery was a fail. My cardiologist must have been scared too. He gave me his personal cell number and told me to call anytime.
Thank Heavens, All went well in my recovery.
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Good grief, Jill. Those three hospital discharge examples should be taught in medical school as cautionary tales of how critically important it is to connect the dots when you’re sending a patient home from the hospital.
A simple error like not confirming that a drug order had been faxed to the local pharmacy can not only cause the patient extreme stress but drag a cardiologist away from other patients!
And all of these stressors are happening at a very vulnerable and overwhelming time for the patient!
Take care – Happy New Year to you. . . ♥
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