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:
Among adults 18 and older, one in five report not having a primary care physician.
Nearly one-quarter of chronically ill adults have visited a provider who did not have their needed test results.
A whopping 91 percent of chronically ill patients did not receive a written plan of care when they were discharged from the hospital.
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.
Fewer than half of privately insured individuals reported talking to their doctor about treatment options and costs.
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?
- 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?
* 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