by Carolyn Thomas ♥ @HeartSisters
When I was discharged from hospital following my heart attack, I was wheelchaired down to the front door, patted on the head, and waved off with just a follow-up appointment with a cardiologist in six weeks’ time. I carried home with me my appointment card, a prescription for a fistful of new daily cardiac medications, a one-page photocopy on post-op wound care, a couple of pamphlets on cardiac rehab and heart-healthy eating, and a Heart and Stroke Foundation booklet called Recovery Road. But nowhere in this small stack of old growth forests was there anything about me.
Me personally. Me, Carolyn Thomas, the shocked and frightened and overwhelmed heart attack survivor.
For example, at no time leading up to my hospital discharge did any doctor or any nurse working in the CCU (the intensive care unit for cardiac patients) ask me about:
- my home life (was there anybody at home to help me while recuperating? anybody at home who needed me to take care of them?)
- my workplace (where did I work? how much time off could I take? would I be returning to a stressful job?)
- my support circle (did I have family members or friends to look in on me, help out with errands, be there in case of need?)
- my finances (would I be able to afford to get those prescriptions filled for the expensive cardiac medications I had suddenly been ordered to take for the rest of my natural life? how much would those expensive meds cost? could I afford to take unpaid time off work?)
It turns out that I was not alone. In a report called “Snapshot of People’s Engagement in Their Health Care” published by The Center For Advancing Health, we learn that a whopping 91 percent of chronically ill patients did not receive a written plan of care when they were discharged from the hospital.
A recent study reported by Reuters repeated this concern, suggesting that many factors post-discharge can cause a patient to need re-hospitalization. These include the person’s ability to keep up with their medications at home, or to make follow-up visits to a personal physician – both issues that can and should be addressed with a competent discharge plan.
The latest numbers from the CFAH show that there is a lot of work to be done in boosting patient engagement in their own health care. For example:
20%
Among adults 18 and older, one in five report not having a primary care physician.
24%
Nearly one-quarter of chronically ill adults have visited a provider who did not have their needed test results.91%
A whopping 91 percent of chronically ill patients did not receive a written plan of care when they were discharged from the hospital.72%
Nearly three-quarters of patients who left the hospital did so without arranging for a follow-up visit with a physician or other health care provider.44%
Fewer than half of privately insured individuals reported talking to their doctor about treatment options and costs.25%
One in four chronically ill older adults reported not complying with their doctor’s recommendations about prescription drug regimens. Failure to comply includes not filling prescriptions, scheduling follow-ups and making lifestyle changes.
Consider what happens to people who are discharged from hospitals that have decided to implement comprehensive discharge planning for their patients.
For example, a study* reported in The Journal of the American Medical Association followed over 3,300 patients in eight countries diagnosed with congestive heart failure (mean age ≥55 years) for about eight months post-discharge. Here’s what researchers concluded for those patients who had been provided pre-discharge planning along with post-discharge support (home visits, telephone contacts, clinic visits, continuous multidisciplinary home care, and day hospital care):
“Comprehensive discharge planning plus post-discharge support for patients significantly reduced readmission rates and may improve health outcomes such as survival and quality of life without increasing costs.”
Hospital readmission rates refer to how soon a recently discharged patient will need to go back to the hospital for care. Being readmitted is not only a dreadful experience for the patient, but it’s a costly burden for those who run hospitals. In the U.S., measures to monitor (and penalize) hospitals with higher-than-normal readmission rates are in place (and widely criticized by administrators and physicians who don’t like to be criticized). Yet, as Dr. Harlan Krumholz of Yale University (one of the champions of the measurement metrics) warns:
“Best we can tell, readmission 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.
“Anyone who has ever been in the hospital knows this. You go home and your doctors haven’t talked to each other, they don’t get the information from the hospital, you don’t really quite know what’s up, you came in on certain medications and you leave on other medications, and through the fog of illness you can’t quite remember what anybody told you. This is why we created this readmission measure. Measuring whether people die or not, or whether they get aspirin or not, is not giving you insight into whether the doctors are collaborating or communicating or whether people are ready to go home.
Consider the new Discharge Lounge in the Patient Care Centre at Victoria’s Royal Jubilee Hospital – the same hospital that discharged me after my heart attack. It sounds like an improvement compared to my own experience there, and a clear 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. The Discharge Lounge offers a safe, supportive atmosphere where discharged patients and their family members can transition from 24-hour care to that long often-scary ride home.
According to the Vancouver Island Health Authority, this lounge is staffed by a nurse who can arrange patient transportation, fax prescriptions to the patient’s pharmacy, and provide patient and family with care education before they head home.
Even if your hospital doesn’t have a Discharge Lounge like this, here’s what you can do if you’re a hospital patient about to be sent home after a significant hospital stay:
- Ask the nurse or a companion to help you get dressed and organized to leave hospital, if needed.
- Carefully review all of your home care instructions with the nurse, particularly about any new drug prescriptions, when applicable, including the written prescription itself, a list of medications you’ll be taking (dosage, times, and frequency), and a list of potential side effects of any newly prescribed medications. You can review this list later at home by calling your pharmacist.
- Ask questions. Don’t leave your hospital room until you understand all instructions clearly. Make sure you have home care instructions in writing along with detailed information about your recommended activity level, diet, restrictions on bathing, wound care – as well as when you can return to work or school, resume driving/sexual relations, and register for cardiac rehabilitation. Ask about any at-home services recommended such as a home nursing visit; confirm all contact information. Keep this info in a journal or separate file folder.
- Collect all your belongings and any medications or valuables that you brought with you before you leave the hospital.
- Ask somebody to drive you home; make sure you can arrange to have somebody spend some time with you at home, preferably overnight.
- Ask your driver to stop at the drug store to fill any drug prescriptions you have been given so you’ll have your new medications right away. You can request home delivery of these meds if your drug store offers that service.
- When you arrive home, relax, put your feet up, and read/follow all instructions given to you.
- Write down in your journal any questions about your health care, big or small, that come up in the days and weeks to come, and bring those questions with you to your follow-up doctor’s appointment.
- Make and keep appointments for follow-up care with your family doctor.
- Be a smart patient. Now is your opportunity to read, research, and become a pro-active world expert in your own particular health issue. The Mayo Clinic site is a good overall medical website to start with.
- Contact your doctor or the Emergency Department immediately for any problems linked to your hospitalization.
Your family doctor should receive a copy of the hospital’s final report about your hospital stay, known as a discharge summary, well before your first follow-up appointment visit is scheduled. Unfortunately, some studies (like Kripalani et al, JAMA 2007) have suggested that this discharge summary reaches the primary care doctor by the time of this first follow-up visit in only 12-34% of such visits, and even then it often lacks key information about the patient. Because of this sad reality, it’s not a bad idea to call your doctor’s office a couple of weeks before your scheduled appointment to confirm that they have indeed received the discharge summary; if not, they can contact the hospital to request this.
Q: What’s your best tip for easing the transition from hospital to home?
See also:
- Why don’t patients take their meds as prescribed?
- Handling the homecoming blues: the third stage of heart attack recovery
- The simple new tool that predicts how well you’ll do after discharge
- How we adapt after a heart attack may depend on what we believe this diagnosis means
- “I’m not depressed!” – and other ways we deny the stigma of mental illness after a heart attack
- Six personality coping patterns that influence how you handle heart disease
- “Seeking Social Solace”: why aren’t heart patients online?
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* Christopher O et al. “Comprehensive Discharge Planning With Postdischarge Support for Older Patients With Congestive Heart Failure: A Meta-analysis”. JAMA. 2004;291(11):1358-1367. doi:10.1001/jama.291.11.1358
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Heart Sisters 
Carolyn,
My wife collapsed and was taken to the hospital. They said that she had a seizure, stitched up her head, and released her on the street. They never even asked her if someone could pick her up, or made a local phone call on her behalf. She was still disoriented and not herself.
One year later she fainted in the local grocery store, taken by ambulance to the hospital, I met her there and the doctors still insisted that she had a seizure and made an appointment for a neurologist. They never tested her heart, never even considered a heart condition, but ordered a cat scan, eeg, and mri of her head and brain. She told the doctor that she didn’t think seizure was the problem, but the doctor ignored her.
One year later she died suddenly after skiing, and the coroner determined that she had coronary artery disease. Just plain poor medical care if you ask me.
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Oh, Willi – I am so sorry to be reading about the tragic death of your wife. It’s especially hard in hindsight to finally learn about the cardiac diagnosis and to think how her death may have been preventable had she been treated far earlier. My condolences to you and your family on your loss.
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Reblogged this and commented:
“Carolyn Thomas, in her blog ‘Study: ‘91% discharged from hospital without care plan’, not only shares the problems she encountered after leaving the 24-hour care of a hospital following her heart attack but also some disturbing, sad, and mind-blowing statistics about the many others who unfortunately share her experience day-in and day-out.
“For the sake of optimizing healing healthcare and the patient experience, Thomas concludes her blog with an excellent and thorough list of recommendations for patients so that they are prepared for the transition from hospital to home and are positioned for success in following their plan of care to optimizing their health and well-being.”
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Thanks so much, Doug.
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The last time I was in the hospital it was for a failed effort to open my totally occluded LAD. A doctor billed me for a discharge visit, but he didn’t see me. I was able to successfully challenge the charge. A nurse discharged me. I was a veteran of coronary care by that time and I had a supportive husband. Hats off to Vetia and granny anny, who have had to deal with so many challenges.
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Thank you for sharing that story. Your pro-active approach to a fraudulent charge no doubt was helped by the fact that you WERE a cardiac veteran accompanied by a supportive hubby – imagine how often this practice might be swept under the rug by ‘first-timers’ who are too overwhelmed to even think of challenging a doctor’s authority.
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Hi Carolyn,
I must give credit where it is due, my hospital did a good job of going through all the information that I needed and some I didn’t want. They asked me about medication and the prescription I was given. The pharmacy I use is closed on Sundays and they made sure I had medications for two days.
My cardiologist even sat down with me and talked about my condition and asked if I wanted to stay until I was stronger or I felt like going home. I was surprised that he talked to me for nearly an hour, but he asked all the wrong questions; had he known what I wanted to go home for I don’t think he would have released me.
What he should have asked was “my home life” and why I was in such a hurry to go home. My husband was dying of cancer and I was both his caregiver and my aging mother’s. I was rushing home to care for two people who needed me.
My hubby died two months later and I am still caring for my mother. The other question was “my support circle”: because my sisters were there, they thought I had support to care for me. They were here because they had told the youngest that I would not survive the day. They thought she lived in the house with me because she brought me to the hospital that morning. Every morning she stops at my house for coffee after she dropped her daughter off for school on her way to work.
I came home to take care of others, kind of funny to look back at it now because I am still caring for my mother and the questions have never been asked.
Robin
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Hello Robin and thanks for sharing your story here. Yours is a good example of some of the reasons that patients are re-admitted to hospital after being discharged as “fine, just fine”. Dealing with both your husband’s death and heart disease at the same time must have been traumatic for you, with the ongoing reality of your mother’s care throughout. I hope your sisters are doing their part in that care.
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Hi Carolyn,
My oldest sister is afraid of the sick, and the youngest is clueless, she said it’s over a year and I should have healed. She says I look just like normal. I don’t worry about either, it is what it is.
Robin
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Carolyn,
Unfortunately, I don’t have a transition tip.
We get discharged thinking WE won’t have complications, or long term effects – that’s for the other patient not ME.
To ask those types of questions (what if my recovery ISN’T this rosy picture you’ve painted?) is to be negative – a poor patient– and none of us wants to be that. We then internalize the unmet expectations in recovery as something WE did wrong or not doing enough or not trying hard enough. Add that psych stress onto the physical stress – is it any wonder re-admit statistics are so high??
That is why your work (among others) has been critically important to so many of us (and why some docs hate Internet savvy patients) – we can compare our recovery to others not just an 8 1/2 x 11 sheet of paper and get a better understanding from those who have travelled the road before us.
You help us become empowered patients!
JetGirl
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Hi JetGirl! Not only do we internalize these unmet expectations, each of us WANTS perfect recovery to be a reality. We WANT to go home again. We want and need things to just be “normal” at last. The faster we can get out of that hospital, the better! Thanks so much for your comment on such an important issue.
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Two weeks ago I entered the hospital for a hysterectomy. Soon after I was wheeled to my room for an overnight stay, I suffered a heart attack.
I was already a cardiac patient due to heart attack in 2003. My gynecologist visited me twice a day for the week I was in the hospital and gave me lengthy advice on what to do once I was home regarding the hysterectomy.
My cardiologist did not visit me for 36 hours after the heart surgeon had put in two more stents and then he only came once.
The only preparation the cardiac part did for my trip home was to refer me to a fitting for a Zoll LifeVest that will monitor my heart function for three months. The follow-up I received on the heart side was done by PA’s. The hospital nurse that dismissed me quickly read through a check list of medicine changes and went over a list checking off that it was covered and having me sign at the bottom.
My husband is 100% disabled and we had family round the clock most of this week. However I am now trying to care for him without lifting over 5 lbs as prescribed by the gynecologist. The cardiac care did not even want to know what my home situation would be.
And I could go on….My first hospital stay after my first MI was no better as far as preparation for home went. Snip, zip and I’m gone.
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Oh, Annie – that’s shocking news about your heart attack during your hospital stay! Your story is maddening – particularly given the vast difference between the twice-daily bedside visits of your gynecologist vs the cardiologist who barely showed up. Quite a telling comparison. I hope you continue to recover well and rely on that important family help during this challenging time.
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Most hospitals now use “hospitalists” for in-house doctors. Some are good, others make you wonder why they bother to show up. Private physicians do not make hospital calls anymore in the areas that are using the hospital doctors.
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This is such important information. And I’m glad to have the research reference. When a genius of a neurosurgeon saved my life after a vascular incident which paralyzed me temporarily, I was sent home with “You’re lucky to be alive. You’re walking. Go walk in your neighborhood and get back to your life.” Er…it’s been a tad more complicated then this. Although this was two decades ago, the study quoted ran from 2001 – 2009. This is disheartening. We still have work to do apparently. Great post, Carolyn!
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Hello Allison. I suspect your experience – essentially “Goodbye and have a nice life!” – is routinely common during discharge. Patients at that point become simply bodies who are taking up a bed that’s more urgently needed for the next patient – so off you go! Sadly, we do still have work to do.
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Hospital care has changed so dramatically, the stays are purposely very short, you get multiple nurses and rarely enough communication between them all. Hospitals are rated on their discharge planning only in terms of core measures. Meaning: were you discharged on aspirin, a beta blocker, were you given tobacco cessation materials, etc.
You would not believe the amount spent at hospitals to make sure they adhere to these core measures. Yet core measures are important but only a small piece of the discharge planning.
I think this is a super article and hope cardiology programs nation wide look through their discharge instructions more closely.
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Thanks for your comment. Yes, core measures are important (the all-important ‘tick boxes’!) but this focus can lead to forgetting that there’s actually an entire human being attached to the reason for hospital admission.
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I’d just like to know why NEVER-smokers are discharged with smoking cessation literature. Am I going to START smoking? It vacillates between funny and irritating depending on how well the discharge is going. “Honey, you REALLY need to consider quitting smoking.” Obviously that nurse hasn’t read my chart!!!
I’d rather they spend those precious seconds telling me something USEFUL! Ok now Ms Cranky Pants is waking up . .
JG
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Haha! This would be frickety-frackin’ hilarious if it weren’t so pathetically TRUE.
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Right, that is why you have such a good post. I hope hospital administrators read it!
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And I hope so too! Did you read this essay on patient education on KevinMD today?
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It will be interesting to see what role social media can play in this. On the same article I think how much money has that hospital spent to make sure it has access to medical interpreters. I bet their staff is trained in how to access their resources to educate their patients, but too many time constraints to nursing staff to implement. But things must change – care plans would be a great start!
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