“Here is a prescription for pain medication. Don’t drive if you take it. Call your surgeon if you have a temperature or are worried about anything. Go see your doctor in two weeks. Do you want a flu shot? I can give you one before you leave. If you need a wheel chair to take you to the door, I’ll call for one. If not, you can go home. Take care of yourself. You are going to do great!”
This constituted my hospital discharge conversation following surgery to remove most of my stomach and the tumor in it. My memories of my week-long stay include spending two sleepless nights waiting for emergency scans, happy nurses and pain medication that allowed me to float obliviously through the whole thing.
Now I am a sucker for encouraging words, but right then, I panicked. I had no idea how to operate my new digestive system. My midsection resembled a gutted fish. Until half an hour before, all monitors, drains and lines were in place, and I had been pricked and poked and given drugs every 90 minutes for the past week.
It was 8:45 in the morning. My husband hadn’t yet arrived. I was free to walk out the door.
Hospitals, under pressure to reduce preventable re-admissions, are implementing discharge programs aimed at preparing us to care for ourselves or for a loved one at home. Payments that link hospital reimbursement to our outcomes are motivating their development.
Keeping in mind that we are a wildly variable crew, ranging from those of us who will really struggle to care for ourselves at home to the growing number who see ourselves as partners in our care and who insist on being treated as such. What can be done to prepare all of us to successfully care for ourselves when we go home?
Based on my experience and that of many others I’ve interviewed, here’s what needs to happen while we are in the hospital:
Invite and expect our participation from the get-go. Patients in hospitals are like tourists in a strange land: we don’t understand the language or the customs, we don’t have a map and we desperately want to find our way home. From the moment we enter the hospital, we need to hear messages of welcome and inclusion from our clinicians and our institution: “You have a role to play in your recovery; we will work on this together.”
Three promising strategies can communicate this message: 1) nurses can include patients and family caregivers in bedside change of shift reports; 2) care team meetings (doctors, nurses, pharmacists, therapists, etc.) can take place in the patient’s room and include the patient and caregivers in deliberations; and 3) physicians can engage patients and caregivers in shared decision making at key points.
It’s easy for harried clinicians to just go through the motions of each of these. And it’s easy for many of us to observe such discussions through the hazy lens of our pain or from behind the protective shield of our non-expertise. Unless we are specifically invited to participate in ways we can understand, many of us will remain passive spectators.
Reduce uncertainty. Programs that require all staff to knock on the door, introduce themselves, ask what the patient needs and only then describe why they are there, help reduce our anxiety and uncertainty.
Knowing that “today we are going to take out the catheter” helps us prepare for our day and gives us responsibility for tracking follow-through. The more familiar we are with the faces, roles and names of those who care for us and the drugs and procedures we are receiving, the better we will understand the risks and requirements of our illness. This can help us make sense of the rhythms of our care in preparation for taking it on ourselves when we get home.
Build skills so we and our caregivers can contribute both in the hospital and at home. Despite feeling horrible, most of us really want to go home as soon as we can. The physical activity, respiratory therapy and pain assessment we must do as inpatients are often prerequisites for our release. Each of these also constitutes an important element of self-care.
Teach us while we are in the hospital why they are important and how and when to do them. This builds skills we need and sets the expectation that we’ll continue them when we are on our own. Ask us about the status of each during bedside change of shift meetings or rounds.
Start early in our stay to teach us about specific warning signs. Our capacity for learning complex new concepts when we are ill enough to be hospitalized is limited, as is the capacity of our worried, distracted, busy family. We need help focusing on the few critical changes, practices and procedures that are most important to pay attention to: temperature; weight; Intake-output.
Teach-back programs that focus on the major tasks of self-care and associated danger signs – like those that target all patients with congestive heart failure or kidney dialysis at admission, for example – are far more effective than the old pamphlet-on-the-tray-table approach.
There is no “killer” app that will magically transform the judgment and skills of each of us to approximate those of skilled professionals. Shifting our orientation from one of passivity to one of active involvement in our care is difficult for most of us when we are well. And it is really tough when we are sick and under stress. Many of us are at our wits end when we are in the hospital – intimidated by the technology, frightened that we or our loved one might die, or angry at what we experience as inattentive or unsafe care. We are not generally open to making big cultural changes at this point.
But we patients and families can’t afford to remain disinterested bystanders: it is not safe and we will suffer unnecessarily unless we are able to care for ourselves adequately when we get home. We need help to do this. And hospitals – the institutions and the clinicians who staff them – literally can’t afford for us to not be involved in our care.
-Jessie Gruman is the founder and president of the Washington, DC based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.