by Carolyn Thomas ♥ @HeartSisters
What does jet lag have in common with being discharged home following a hospital stay? After Yale cardiologist Dr. Harlan Krumholz returned from an overseas trip suffering from a particularly bad case of jet lag, he described the similarities like this:
” People were talking to me, but I couldn’t concentrate. I was a little clumsy. I could have fallen. I realized that I felt just like my hospital patients do when they go home.”
He recognized that many hospital stays can actually confer jet lag-type disabilities. In his article published in the New England Journal of Medicine, Dr. Krumholz dubbed this post-hospital discharge distress post-hospital syndrome. (1)
For example, he notes that most hospital patients:
- are commonly deprived of sleep
- experience disruption of normal circadian rhythms
- are nourished poorly
- 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, he explains, “We are not really taking into account what happens to people when they are hospitalized.”
As a result, Dr. Krumholz doubts that the term post-hospital syndrome has actually caught on yet in most hospitals:
” I don’t think hospitals are understanding this as a strategy to improve recovery and reduce re-admission. We have so far to go to make the hospital a truly healing environment rather than one in which we (implicitly) say, ‘Tough it out. We’re taking care of your acute problem. Be grateful that you’re getting the attention you’re getting.
His colleagues in medicine would do well to pay attention to this lack of understanding. As Forbes journalist Matthew Herper once described Dr. Krumholz:
“Doctors trust him because he speaks his mind and puts patients first.”
He also believes that it’s possible to significantly reduce hospital re-admission rates by identifying predictable issues that seem to cause those expensive and distressing re-admissions.
This year, he revisited his NEJM article during an interview with Dr. Robert M. Wachter posted on the Patient Safety Network of the U.S. government’s Health and Human Services division.
Dr. Wachter wondered why his guest had become so interested in what happens to patients after they leave the hospital. The answer:
“In the 1990s, we were focusing on whether people were getting the right treatments or not.
“But the issue of re-admissions nagged me. At the time, a landmark article had been published on re-admission – but almost a decade had passed with no action.
“I had noticed, even before I discovered that article, that many patients were coming back to the hospital and I published a paper looking at patients with heart failure – and saw that about half the patients were admitted again within six months. I haven’t stopped thinking about it since then.
“We never used to see hospital discharge summaries as a tool for communication, or as essential to communicating what had happened in the hospital to the patient.
“That led me to want to study their journey – and that led me to the post-discharge period and re-admission.”
Consider the serious nutritional issues that are commonly experienced during hospitalization.
Dr. Krumholz cites one study, for example, that found one fifth of hospitalized patients 65 years of age or older had an average nutrient intake of less than 50% of their recommended energy maintenance requirements.
And patients are commonly ordered to have nothing by mouth for specified periods, during which they are not fed by any alternative means. Cancellations and rescheduling of procedures or tests can extend these long periods of time.
Malnutrition can affect every system in the body, resulting in the following risks:
- impairment of wound healing
- increased risk of infections and pressure ulcers
- decreased respiratory and cardiac function
- poorer outcomes of chronic diseases
- increased risk of cardiovascular and gastrointestinal disorders
- poorer physical function
Consider also the impact on hospital patients of what doctors call de-conditioning (the resulting loss of muscle tone and endurance after days or weeks of chronic disease, immobility, or loss of function).
Patients commonly become de-conditioned, resulting in impaired stamina, coordination, and strength, which in turn place them at greater risk for accidents and falls. These limitations may also reduce their ability to follow even the most basic of post-discharge instructions, resume basic activities or attend follow-up appointments.
Speaking of post-discharge instructions, we know that the process of sending patients home from most hospitals is woefully ineffective in including a written care plan to help them adjust to life at home. See also Study: “91% discharged from hospital without care plan”
And Dr. Krumholz warns that increasingly shorter lengths of stay mean it’s even more important to start preparing patients for a successful convalescence starting from the first day of hospitalization – instead of just during the final few overwhelming minutes as they’re leaving their hospital beds.
As Dr. Eric Coleman of the University of Colorado, Denver sums up succinctly:
“There couldn’t be a worse time, a less receptive time, to offer patients information than the 11 minutes before they leave the building.”
Here’s how Dr. Krumholz explains the basic practice as it generally happens now: people come into the hospital with a medical condition, and then doctors immediately try to jump in to mitigate and cure, if possible.
“In the course of that care, we are causing a lot of collateral damage, which we’ve tended to discount as ‘they may be a little uncomfortable. They may have roomed with someone who was up all night. We may have poked them at 4 a.m.
“But the big thing is that we are saving their lives – so we just push forward.”
Dr. Krumholz points out that hospital staff can do one of two things for their patients:
- ease the path, catch them gently, and help them make a successful transition, or
- they can say “You’re punch-drunk from everything we’ve done to you, and now we’re going to set an obstacle course in front of you, wish you luck, and see how this stress test plays out for you in the next couple of weeks.”
Far better, warns Dr. Krumholz, to “make the hospitalization more soothing, more healing, more supportive, more restful – and, maybe, better position people for the post-hospital period.”
In the end, he explains, it’s not so much about hospital re-admission; it’s more about improving recovery.
But how to accomplish this? Here’s how Dr. Krumholz believes it can happen:
“We need to make sure that the patient gets adequate sleep, in an environment conducive to that.
“I would have patients in their own room.
“I would be sure people are well nourished. We would encourage, as preferred by the patient, social support and visits.
“We would surround them by bright colors and sounds and odors designed to lift their mood.
“We would avoid blood draws, Foley catheters, tests and procedures except what is absolutely necessary.
“We would give people a schedule every day so they know what to expect and when, enabling them to have a sense of control and understanding.
“We would avoid a lot of the uncertainty. For example, on the consult service, we don’t tell people when we’re going to visit them. So, they are stuck in the room most of the day because they are afraid to miss us.
“It is as if we implement systems that give people anxiety, and we’re making it hard for them to be active in any way.”
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Harlan M. Krumholz. “Post-Hospital Syndrome — An Acquired, Transient Condition of Generalized Risk”. January 10, 2013. N Engl J Med; 368:100-102.
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Q: Have you encountered post-hospital syndrome after being sent home?
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NOTE FROM CAROLYN: I wrote much more about before, during and after hospital discharge in my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). 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 my publisher Johns Hopkins University Press (and use their code HTWN to save 30% off the list price when you order).
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Heart Sisters 
Wow, Carolyn, great article and such thought-provoking comments here. I hardly know where to start with what I’m thinking in response.
First — closing a cardiac rehab program? That’s INSANE. Our hospital even opened a whole fitness center as a separate facility and the rehab program I went through twice is housed there, along with a gym, pool, spa, various healthcare offices, and a physical therapy facility. Obviously it costs to have a membership but it’s probably the best fitness center in town. Why doesn’t every hospital open a fitness/wellness center? Talk about reducing the need for hospitalization — taking control of your own health would be the answer. And investing in wellness will surely save you healthcare money in the long run.
I guess my thoughts on follow-up care might be a bit unrealistic but hear me out. Through a series of events, a cardiac support group was started at the hospital a few years ago when 6 cardiac rehab patients who had all had open heart surgery wanted to stay in touch with each other. And through another series of events I ended up leading that group when the original leader had to move for a job. I am discovering what you’ve proven to be true through your blog and book — that the best emotional support a cardiac patient can receive is not from doctors but from other heart patients who have been right where they are.
You would not believe what happens sometimes in our group meetings — over and over again a new person will come in with questions and fears, and there is one person there who has been through exactly what the new person is facing. Yet I’m often frustrated when the meetings are poorly attended and my support from the hospital is kind of lacking.
SO — what if hospitals hired cardiac patients to do the things that this article says are needed? Just a part-time job even at fairly low wage where they would visit patients to talk about follow-up care and listen to that person’s needs? It would be similar to being a chaplain, I suppose, but with a specific focus. And maybe some patients could volunteer to do this, but I’m saying the hospital’s money would be well spent if they hired a non-healthcare-specialist to do this work. And it would help the patient to pay those medical bills a little too.
I guess it all boils down to this thought — we might just need to be the change we want to see! Am I crazy for thinking this? Or for feeling like firing off an application letter to my hospital right now? 8^)
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Hi Meghan — I agree 100% with your observation: “the best emotional support a cardiac patient can receive is not from doctors but from other heart patients who have been right where they are.” You have no doubt seen how true this is countless times in your support group. Congratulations to you for leading this group!!! Now if only you could convince the docs and nurses working in cardiology to spread the word about your group to their patients before discharge…
Our local hospital has a number of volunteer visitors on our cardiac ward: some visit open heart surgery patients specifically, some are from our cardiac rehabilitation program’s 7-week Heart To Heart classes for all newly diagnosed heart patients and family members.
Getting permission from hospital administration to allow bedside visits from volunteers was an uphill battle. Getting later permission from the hospital to provide a meeting room to host a monthly WomenHeart support group (led by a heart patient freshly-graduated from the WomenHeart Science & Leadership training at the prestigious Mayo Clinic) was like pulling teeth – requiring permission from both the hospital’s legal and ethics consultants. At that level of official hospital involvement, it’s all about CYA liability and bureaucracy.
When a Heart To Heart volunteer visited me in the CCU shortly after my own heart attack, it was a magical moment! Here was a woman just like me, walking, talking, and surviving years after her own cardiac event, inviting me to attend the next 7-week education program for heart patients. I couldn’t sign up fast enough! I had so many questions and worries – and here was a real live survivor who’d been through what I had, too – and looking pretty “normal”! Her visit filled me with hope and encouragement.
You are definitely not “crazy”, Meghan. Get that application ready!!!
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Unquestionably, nursing care, whether via an R.N., friend, or family member makes all the difference. The denial of patient needs, even by those providers who, themselves, (and few haven’t), experienced even mildly-debilitating illness, is, .. well, the word would have to be.. bizarre… as is the need for human touch…
Another ER visit today, and, of course, just another madwoman, made worse by my asking if I could just touch the arm of the provider. I have a hypothesis that if I did not look like your basic old white “American” female, that such gestures and human need would not be considered odd. (if not actually threatening). I was allowed to touch the provider’s arm for a few moments, but I thought she would have an attack, she went so rigid. I’m definitely in the wrong culture.
Across the board, regardless of medical condition, unless you are actively dying, there is little humanity. I understand that medical providers believe they must protect themselves from facing the reality that they are, increasingly, not allowed to do their jobs.
People with addictions are getting a lot of attention… destigmatization.. understanding… that’s fine.. but why should anyone have to be an “addict” or on one’s death bed, for there to be a shred of healing humanness.
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Carolyn: Lots of issues and food for thought here.
It’s ironic that hospitals are about the opposite of a healing environment… Dr. Krumholz’s suggestions are right on target; however, I would note that there was not even a mention of how to deal with the anxiety, depression, or other psychological issues that accompany hospitalization and post-hospitalization.
After more than ten hospitalizations, I have yet to receive a phone call both how I was doing and what else I needed to do…
For me, this would have been the most effective follow-up intervention and could have potentially prevented further hospitalizations. Even the Mayo Clinic has no follow-up phone procedures…
It’s about time medicine consider healing after hospitalization as a critical component in care.
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Hello Dr. Steve – it IS ironic – and utterly unacceptable – that a hospital would not qualify as a healing environment! That’s just insane.
I agree 100% with your observation that post-discharge follow-up at home MUST be considered every bit as important as the expensive hospital care that precedes that discharge.
Just imagine, at the very least, if every cardiac unit in every hospital had as a standard protocol a person in place whose role it was to make follow-up phonecalls to patients at home (and more than one if the patient is particularly symptomatic or stressed)? Cost would be a drop in the bucket compared to the millions spent on our very expensive interventional procedures, and as you correctly say, could help to address the very reasons for re-admission that you and I both know can happen to a terrified heart patient for whom every post-discharge twinge can feel like another cardiac event!
We already know (lots of published research out there!) that post-cardiac depression/anxiety is real, is common, and is usually temporary and treatable if it’s identified appropriately before it gets far worse. But left ignored and dismissed by a healthcare system that doesn’t even bother to check, a depressed/anxious/scared heart patient is far less likely to eat healthy, get exercise, stop smoking, follow even the most basic of doctor’s orders (if they can even be remembered) and remain OUT of the ER in the near future.
I’m very disappointed to learn that even Mayo Clinic does not implement a simple follow-up phone system in cardiology.
Q: how come this makes perfect sense to every heart patient but even Dr. Krumholz says that the concept of post-hospital syndrome has yet to actually catch on in most hospitals? Arrrrrgghh…
READERS:
please read Dr. Steve’s essay on the “swirling emotions” of heart disease.
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Without going into the details which have been covered in the article and the comments: Post surgery recommendations from the hospital are woefully inadequate. There were so many things that happened to me after open heart surgery that were not covered in the 3-ring binder given to me to take home, reactions more common to women than men, plus all the new medications your body and mind have to adjust to.
Thank you for bringing light to the subject, as you always do!
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Such an important point, Ree – the person being sent home from the hospital may look okay, but that person is almost always completely overwhelmed and frightened (and often in pain!) Both body and mind are deeply affected.
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After open heart surgery to repair my severely leaking mitral valve, a week in ICU, a few days in next step Care & I was indeed sent into the wilderness with a fistful of pills, a large folder of instructions I had read to me in 5 minutes that I couldn’t understand through my mind fog, plus plenty of smiling good wishes.
I could barely get out of the car an hour later…4 steps took forever and I had trouble breathing….I needed chairs stationed through the house for resting places on the way to the bathroom and bedroom.
I have never felt so alone…that is, till the home health care nurses showed up. Great article….wonder how to get this doctor’s views into more hospitals?
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Again, another vote for those visiting nurses, Sunny! Why aren’t home visits a standard practice in every cardiac discharge protocol? Or even a phonecall from the hospital, as Dr. Stephen Parker suggests above (Heart Currents).
When my daughter came home from the hospital with her new baby, a home visit with the nurse was arranged for the 2nd or 3rd day just to check that all was going well for both mum and babe.
Where was my home visit after my heart attack? I had to lie down for 20 minutes after simply taking a shower – and had no clue why I was so utterly exhausted, or whether that crushing fatigue was “normal” or not.
How to get more docs to read about Dr. Krumholz’ important work? We could start by sharing his NEJM study (cited at the end) with physicians we know. And hospital admin. Maybe they’ll pay attention to that more than they might to my blog!
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When I had abdominal surgery years after my heart attacks, I was sent home to recover. When I sat up, I had chest pain with the pain meds in my system. I called the hospital and they said to come in. If it’s a heart attack chest pain then driving yourself in is not advised. I called my cardiologist and cardiac rehab nurse. The nurse figured it out – CO2 bubbles rose into my chest when sitting and not if I was laying down. The cardiologist advised my husband to sit with me and if anything progressed in a negative direction to call for an ambulance and then to call him at home.
The thing that cardiac patients need to realize is that it’s a lot of work to be a responsible cardiac patient. The abdominal surgery required a cardiologist’s release. My cardiologist is amazing – he has provided me his personal cell number to be used in emergencies. Ditto with the cardiac rehab nurse and administrator. This team has my back, no matter where I am in the world. This is the relationship that the patient must build. Approach your care like a good project manager and your health is the project.
The nursing staff in recovery and discharge needed to sync up with cardiology as to the integration between the medical team discipline silos and the ill patient who is lacking medical wisdom – needs to be seamlessly executed to protect the health of the patient.
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You have your cardiologist’s cell number? I’m guessing that this is very rare, Anne. Love your “project manager” advice – that’s important for all heart patients to know!
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As usual your articles are spot on…thank you! I could never vocalize that well.
I was treated for my STEMI heart attack for 4 days in the acute sense and as soon as I didn’t need acute care, I was sent home. I had many issues with the 5 new drugs I was put on but didn’t know which were from the heart attack or from the drugs.
Instead of being readmitted, I was made to go to doctor visits, labs and xrays in the car when I was exhausted and could hardly breathe. The doctor called the next day and said I had fluid in my lungs and added fluid pills.
In the meantime, I was on heparin in the hospital and my arms were black and blue from all the blood draws from my hands to my shoulders. Then upon discharge, I was given a script for Lovanox and coumadin and told how to inject…when they tested 5 days later my coumadin level was off the charts high !! I am not a nurse but luckily had a nursing service visit me that was a godsend!
But the whole point I need to make is that we are not trained medical people and have no idea what to expect or do upon discharge… It’s been over a year now and I have recovered very well mostly due to my scouring the internet all the time and finding sites like yours.
I also have your book and I highly recommend it!! Thanks!!
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Hello Chris and thanks for sharing your post-hospital experience here. My response while reading about it was THANK GOD you had that visiting nurse who could help you at home. You hit the nail squarely on the head when you observed that as soon as you didn’t need acute care, you were sent home. Yet in so many ways, your hospital was sending home a person who was still very ill, still trying desperately to figure out the difference between heart attack symptoms and drug side effects. If hospitals are going to boot their sick patients out the door too soon, they should also be funding appropriate home care services, or convalescent facilities for us like we used to have decades ago… I have a friend who’s been traveling in Colombia, South America for the past few months. Just a couple of weeks into the trip, he became seriously ill and had to be hospitalized (health care in Colombia, by the way, is ranked 12th in the world, far better than North American health care). But when he was discharged to his vacation home, he had scheduled doctor visits at home, nurse visits at home, physiotherapy visits at home – all part of his medical care. His hospital doctor called or texted him EVERY DAY to check on how he was doing. Why don’t we have that?
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Of course, when a top hospital closes the cardiac rehab facility to utilize the space for conference rooms, you learn that our hospitals are run by profit seeking management. Pretty sure this hospital is having WAY too many meetings if they need to find new conference rooms. Death by meeting takes on a whole new context.
In a time of vast indifference to others, going to the gym is a lost cause when people attend with contagious infections (flu/colds/pneumonia/whooping cough) that are likely life threatening to people with weak hearts. At cardiac rehab, if someone comes in ill or not feeling well (pretty evident with their performance), it’s noticed and they are asked to leave (to their doctor or the ED or to bed) with a smile and a hug… but now you cannot expose others to what is making you ill. The cardiac rehab staff is trained and are not indifferent to their clients.
And now, their cardiac patients are outed from the programs that prevents repeat visits to the hospital.
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That’s pretty shocking, Anne. One of your sources quoted the hospital administrator who defended the decision to close the cardiac fitness program because it’s “not acute care”. OF COURSE it’s not acute care – it’s an evidence-based way to PREVENT future acute care, which is both expensive and traumatic (for patients!)
I’m guessing that this is the same witless bureaucrat who will happily approve spending millions on the cath lab and cardiac surgery on patients who have NOT been able to attend the cardiac fitness programs. Just plain stupid…
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