“Here's your prescription. Don't drive if you take it. Call your surgeon if you have a temperature or are worried about anything. See your doctor in two weeks. Want a flu shot? If you need a wheelchair to take you to the door, I'll call. If not, you can go. Take care of yourself. You'll do great!”
These were my nurse's parting words before I left the hospital after a weeklong stay and surgery to remove my stomach and the tumor in it. I said goodbye. Then I panicked. What did I need to know about my new digestive system? What about that big scar? Until then I'd been closely monitored and checked on every 90 minutes.
Now it was 8:45 in the morning. My husband hadn't arrived. I was supposed to move on.
Many hospitals have implemented discharge programs to reduce preventable readmissions and prepare us to care for ourselves or a loved one at home. There is a lot at stake in them, since financial incentives are increasingly tied to outcomes.
There is a lot at stake for us, too.
And while some of us will work capably to care for ourselves, the rest of us are scattered on the continuum of self-care. We vary in our energy, skills, knowledge, and support. What might be done to help us successfully care for ourselves at home?
First, welcome and include us in our care from the moment we arrive. In the hospital, we are tourists in a foreign country: we don't understand the language or customs and we desperately want to get home. If we and our caregivers hear, “You have a role to play in your recovery; we will work on this together,” we see a way to regain some control in a situation where we feel we have none.
While inviting our participation is in part an attitude of health professionals, it can be built into practice (for example, include patients and family caregivers in bedside change-of-shift reports and care team meetings that take place in patients’ rooms).
But these are not simple solutions. It's easy for clinicians to go through the motions of these programs, and it's just as easy for us to observe them through the hazy lens of our pain or to retreat behind our lack of expertise. That's why we need to be specifically invited to participate in our care in ways we can understand.
Second, help reduce our uncertainty. Require staff to knock on the door, introduce themselves, ask what we need, and only then describe why they are there. Give us a general plan for the day. These approaches help us prepare and take an active role in making sure that things get done. The more familiar we are with our treatment plan, the better we will care for ourselves when we get home.
Third, help us acquire the skills we need to contribute both in the hospital and at home. The exercises, therapies, and self-assessments (for pain, for example) we do as inpatients are often prerequisites for our release, and we may need to continue them when we go home. Explaining why they are important and how and when to do them establishes the expectation that we'll continue them on our own.
Repeatedly remind us and our caregivers about specific warning signs. It's tough to learn complex new concepts, especially when we are ill, so help us focus only on what we must pay attention to. Teach-back programs that focus on the major tasks of self-care and relevant danger signs are far more effective than the old pamphlet-on-the-tray-table approach.
No single program or intervention will magically transform our abilities to match those of our nurses. And making the shift from passivity to active involvement in our care is difficult for most of us even when we are well. It is really tough when we are sick and under stress. Many of us panic when we are in the hospital. We are intimidated by the technology, frightened that we or our loved one might die, or angry at what we experience as inattentive care. We are not generally open to spearheading big cultural changes at this point.
But patients and families can't afford to remain bystanders: we will suffer unnecessarily unless we are able to care for ourselves adequately when we get home. We need your help to do this. As it happens, hospitals—and the clinicians who staff them—also can't afford for us to not be involved in our care.