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.
–Handling the homecoming blues: the third stage of heart attack recovery (more from Dr. Wayne Sotile’s four stages of recovery)