By the time I reached the sixth day of my hospitalization for stomach cancer surgery, I was antsy to go home and I quizzed each nurse and physician who came into my room about what must happen for me to be liberated the following day. Their responses were consistent: my surgeon would visit in the morning and write orders for my release. Then I would have a comprehensive discussion with my nurse about my discharge plan, after which I could leave.
I was pretty curious about getting that discharge plan. The Patient Protection and Affordable Care Act raised the stakes for hospitals to reduce high readmission rates and new data on those rates are available. The rates and approaches to reduce them through improved discharge planning are the subject of news reports, journal articles and conferences. And I, a patient in a modern, quality-conscious hospital, was going to experience this process myself!
Here’s a rough transcript of my discharge discussion:
Nurse: Good news! The orders came through! You can go home.
Me: (in the corner untangling wires from my cell phone and iPod chargers) Wonderful. What do I need to know?
Nurse: Here are a couple prescriptions 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!
That was it: 8:45 a.m. and I could leave.
Now I am a sucker for encouraging words, but right then, I wasn’t sure I knew how to operate my new digestive system, plus my midsection looked like a gutted fish. Could I injure myself? What should I do to prevent complications or pain? After all, until this moment every milliliter of input and output to and from my body was measured, every perturbation in temperature, blood pressure and blood sugar was scrutinized every few hours and swiftly responded to with drugs or tests. Did I now need to assume this level of vigilance in order to be safe?
“Use your judgment. Take it easy. You’ll do fine.”
Fortunately, my nurse was right. I have taken it easy. I have used whatever judgment I could scrape together between naps to guide my eating and physical activity. And I am slowly regaining my energy.
However, this brief discussion didn’t prepare me for the transition from complete dependence to complete independence, to leave the hospital confident that I could care for myself. And it would have done nothing to help mobilize patients and families who are less aware of the many demands of post-surgical care at home.
I know that my nurse delivered my discharge plan as required: I have the paper she read from in front of me now. And I know that she checked off that box in my record indicating that she had done so that is part of the hospital quality rating effort. But I wanted more: I wanted details about what might go wrong, when to worry and which small changes to ignore. I wanted to know what I had to do to help myself get better. I wanted to know how much and what kind of help I would need to care for myself. I wanted some acknowledgement of the gravity of what I had just experienced and the magnitude of the responsibility that was now mine.
Would it make any difference to my current health status had I received what I wanted? I don’t know. Scant research has been conducted on this specific question. Would it have helped me and my husband prepare to take over my care? Yes.
And here is the curious point where the impulse to deliver health care that is supportive of our engagement in our care bumps into the reality of the strategies available to actually make such changes: vital interpersonal interactions between professionals and patients too easily collapse into thoughtless, routine check-the-box exercises when they become required by institutional performance measures. Inquiries about completed advance directives and pharmacy counseling are other examples of where this happens.
The Center for Medicare and Medicaid Services has a well established requirement for patient hospital discharge planning that reflects the commonsense idea that we do better when we are engaged in caring for ourselves when we are discharged from the hospital. The need to ensure that we are able to do so has only become more urgent since then, as advances in technology make it possible for us to return home quicker and sicker, taking on the tasks of medication, diet and rehabilitation previously performed by professionals.
But it’s going to take a lot more than a 90-second discharge discussion to help us perform these tasks as well as we can. There are some well-designed approaches that have the potential to make a difference, but their effectiveness depends not only on resources, but also institutional and professional commitment. What will spark widespread, sustained implementation of such comprehensive discharge programs that will ensure that all of us can competently care for ourselves and our loved ones after a hospital stay?
Jessie Gruman, PhD, 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.