If you're having a cardiac procedure or surgery, you know you'll be tested, evaluated and monitored 24/7 by a team of nurses and doctors until it's finally time to go home. But once you arrive home, you may wonder, “Now what?”
You're certainly not alone. In the United States, records for 4 million annual hospital discharges show heart disease as the main diagnosis, with a 4.6-day average length of stay. Patients come—some with advance planning, others on an emergency basis—and patients go. The “go” can go wrong if they're unsure of what to do and when to do it once they get home.
Whether you're discharged after a relatively routine procedure like angioplasty to reduce a blocked coronary artery or after major surgery like a coronary artery bypass graft, valve surgery or a heart transplant, or even a newer therapy like surgical ablation for atrial fibrillation, the discharge “takeaway” is critical. You leave the hospital facing a new way of life with a new set of guidelines—and a new beginning.
Whether going home or to another facility—rehabilitative, transitional or chronic care—you should be evaluated for a number of factors before you leave the hospital, say a team of authors led by Eric Alper, M.D., a professor at the University of Massachusetts Medical School in Worcester, Mass. Some of these factors include your:
* cognitive status: Do you understand what's going on?
* emotional status: Are you experiencing depression?
* activity level: Do you need assistance walking or getting out of bed?
* home's suitability for your condition: Does your home have stairs, which could be difficult if you need a walker or wheelchair?
* ability to obtain medicines and services: Can someone drive to the pharmacy if you're unable?
* ability to obtain heart-healthy meals: If you can't get to the grocery store or cook, is there someone who can help?
* availability of family or companion support: Do you have family members or friends who can help you as you recover?
* transportation: Do you have someone to drive you home and someone to take you to follow-up appointments?
All of these factors should be addressed before you leave the hospital. If you're going home, you need to be able to obtain and self-administer medicines, perform self-care activities, eat an appropriate diet and follow up with designated healthcare providers.
“It's all so incredibly important—that transition between hospital and home,” says Lynne T. Braun, Ph.D., C.N.P., F.A.H.A., a nurse practitioner at the Preventive Cardiology Center and the Heart Center for Women at Rush University Medical Center in Chicago. “Patients are incredibly vulnerable at discharge. It takes a village to put the appropriate process in place to make sure those who are discharged leave with the education they need.” That means consistent reinforcement, follow-up and monitoring so when patients wave “goodbye,” they're not saying “hello” again soon.
Braun gets to the core of the matter firmly but gently. “I like to sit down [with my patients] and say, ‘These are the issues I think we should work on together. Your disease does not have to progress if you are adherent.’ Then I ask, ‘Is there anything on this list of recommendations that you'd be willing to start? Have you positively changed any lifestyle behavior in the past, and if so, what worked for you and made you successful?’”
She weaves the answers into the discharge instructions. “Someone else who's important needs to hear all this, too,” she adds. “That's because the patient may not hear or remember it all.”
“That's so true,” says Suzie Chase Brown, 43, of Austin, Tex. Both she and her daughter, Maggie, underwent major cardiac procedures as very young children. Maggie, now 5, had surgery at age 2½.
“The spiral discharge binder [they gave me] with instructions was really helpful, but I recommend having a second person there, besides you and the patient, who can write things down,” Brown says. “You as the family member or caregiver will be too busy listening. Two days after Maggie's discharge, I couldn't remember details about one important medication.”
“Patients about to be discharged are in an ‘I can't wait to get home’ mindset as well as still suffering from post-surgery attention-deficit, possible anxiety or discomfort and often don't hear or can't remember most of the discharge instructions,” says two-time cardiac surgery patient John Lawlor, 67, of Boca Raton, Fla. “Plus, much of the instruction is often delivered with the expectation that patients or their caregivers have a solid base of medical knowledge.” But that's not always the case. He's talked to dozens of patients and recently developed his own “tracking system” to help them maintain a positive perspective on their recovery after heart surgery.
POWER TO THE PATIENT
Although many healthcare facilities provide patients with comprehensive discharge handbooks before they leave, as of yet no one's really “written the book” on care transitions, says Eiran Gorodeski, M.D., M.P.H., a cardiologist at the Cleveland Clinic and medical director of its Heart Care at Home Program.
In a perfect scenario, the patient's care team would follow him home, says Gorodeski, but since that's not possible, the program sends a virtual “team” home with the patient. That's accomplished by a wireless monitoring unit that plugs right into a regular telephone jack and electrical outlet. The device sends the patient's blood pressure, heart rate, weight, blood oxygen levels and other important information back to the heart care team so they can keep an eye on how the patient is doing.
Gorodeski believes the increased emphasis on transitioning from hospital to community has occurred in part because of the number of heart failure patients who go home only to return soon after for readmission. Heart failure is the most common cause of hospital readmission in patients over age 65.
“Discussions about care transitioning have always been important,” he says, “but they are especially important now as our focus turns to value—juxtaposed against concerns about escalating healthcare costs and unforeseen effects of the Affordable Care Act.” Additionally, Medicare now fines hospitals whose rosters show too many patients readmitted within 30 days of their discharge.
Know before you go
If you've got discharge questions, you need answers. Here's a list of questions to ask your doctor before you leave the hospital to get you going on the road to recovery:
* Who will be responsible for my care when I leave here? How and when do I contact them? What about nights and weekends?
* If I have a caregiver, what does my caregiver need to do for me during this initial period that later I'll be able to do for myself?
* What medicines should I take when I leave? How are they different from what I took before my procedure? What are their side effects and how do they interact with each other? How do I manage pain? May I still take my supplements? Some medicines can be expensive—what will mine cost?
* What are the potential complications of my procedure?
* What signs and symptoms should I watch for that might mean I'm getting worse and need to contact the healthcare team? Can you tell me three main things I need to watch for that would indicate something is wrong?
* How do I care for my incisions on a daily basis? How often should I change the dressing and/or bandage?
* Have you communicated everything that's happened to me here, and all my pertinent information, to my doctors or to the healthcare team at the location to which I'll be discharged?
* When can I shower or bathe? Climb stairs? Resume normal physical activities? Drive? Have sex? Lift things? Return to work? Take a vacation? Start a physical activity regimen?
* Do I need to follow a special eating plan, and are there things I absolutely shouldn't eat or drink because they could interact with my medicines?
“In the past, hospitals took care of a patient, he left and disappeared into a black hole and we had no idea what happened,” says Gorodeski. “Now outcomes matter because they affect the earnings of every hospital system in the United States.”
With Gorodeski as director, the Cleveland Clinic recently launched its new Center for Connected Care, established to help patients navigate all of the complexities of transitioning from being sick in the hospital to functioning at home, whether that includes nursing homes, specialized care or self-care at home. “It will even include mobile physicians and nurses who travel to patients' homes,” he says.
Discharges at other large medical centers are also designed to work like a well-oiled machine. At Ronald Reagan UCLA Medical Center in Los Angeles, the hospital operates specific units for specific procedures and surgeries, says Bertha Viramontes, R.N., a staff nurse in the cardiothoracic unit. “People who work here are very specialized and can provide continuity of care, delivering the same information every time,” she says.
Patients come to her unit after the intensive care unit, when they're more stable, she says. “We start teaching them ahead of discharge. It's so much information that they can't handle it in just one day, especially when they're having trouble concentrating. We go over and over it until everything is finalized on discharge day and we give them our Healing Heart Handbook to take home.”
She makes sure family or caregivers also read it, but her focus remains on developing trust with the patients. “I want them to take responsibility and be proactive,” she says. “It's empowering to take care of yourself.”
TAKE THIS, NOT THAT
The most perplexing dilemma patients leaving the hospital typically face is to know what pills have been added, discontinued or changed—this is called medication reconciliation. A 2012 study from the University of Massachusetts nursing department looked at older adults with heart failure and found that 71 percent of patients being discharged from the hospital had at least one type of medication reconciliation problem that frequently involved a high-risk medication.
“It seems 60 to 70 percent of the people we touch have some issue with medication,” says Gorodeski. “It may give them side effects, maybe they're taking it at the wrong time of day, maybe doubling up or maybe they're prescribed something new that's not consistent with their old medication.”
“[Before discharge], I like for patients to bring every single bottle to me so we can look at them,” says Viramontes. “We give them a schedule of when to take them and whether to take with food or without food. Patients can get confused when medications are changed.”
After medicines, the patient's next question is usually, “What do I do next?” Patients may also not know which doctor they should see, says Viramontes. Do they follow up with their cardiologist or the surgeon?
“We always need to make sure the patient has a follow-up appointment, usually within a few days or a week,” says Braun. “Someone needs to make that appointment and be sure information gets passed on.”
She considers cardiac rehabilitation a “best-kept secret” and wishes more patients participated in it, and for good reason. A 2007 study by lead author Jose A. Suaya, M.D., Ph.D., of Brandeis University in Waltham, Mass., found its use relatively low among Medicare beneficiaries despite strong evidence of its benefits. A 2012 Mayo Clinic study found that patients who participate in cardiac rehabilitation after having heart interventions such as angioplasty, stents and clot-busting drugs have a 45 percent lower mortality rate.
Discharged patients who “go it alone at home” should be aware of red flags that signal trouble, says Gorodeski. Depending upon the cardiac procedure, warning signs and symptoms could include fainting, fever, shortness of breath, unusual weight gain, palpitations or swelling of ankles or legs.
Any bleeding or oozing of the incision is also an alarm, says Viramontes. “I have [my patients] look at their incision before they leave to make sure they know to call us if it looks different.”
Patients should ask questions to find out when they can shower or bathe, resume sex, drive and return to home management and/or work. Don't expect to be back up and running around the next day. Be realistic—according Johns Hopkins Medicine's cardiac surgery guide, dressing, personal hygiene, reading, writing, visiting, walking and resting should fill your day. Most people are back to their regular routines within days or several weeks after their cardiac procedure or surgery.
Understandably, you may feel blue—research shows depression is prevalent in one-third of cardiac surgery patients at the time of discharge, which can decrease motivation and significantly increase the risk of future health problems.
“Seek out real stories of recovery from more experienced patients,” says Lawlor. “Track your healing, energy and emotional progress every day in order to maintain a positive perspective on your recovery–especially on the negative days.”
Taking the time to talk to your healthcare team about the discharge plan of care before you go home will go a long way in making sure you don't have to return to the hospital due to complications from not having proper aftercare. Your doctor may really like you, but he or she would be happy not to have to see you back in the hospital anytime soon!