Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

Hospital Discharge Without a Net


I write about what it takes for us -- whether we are sick or well -- to find and make good use of health care today.  At the end of September I was hospitalized for surgery to remove a tumor in my stomach. Below is one in a series of five observations about my experiences since then.

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?


More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

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Comments on this post
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Steve Schoenbaum says
November 4, 2010 at 6:25 AM

Jessie, thanks for reporting on your experiences with the transition from the hospital to home and pointing out both the process that occurred and issues it raised. I am a member of the board of the Picker Institute, an organization that exists to promote "patient-centered care". In the last year or so, we have been trying to develop the concept of "Always Events" - things that patients should always experience in care settings. Several months ago a group of "experts" came together to advise our board on this and suggested that we first focus on care transitions and communication - i.e., things directly in line with what you discuss in this blog.

Picker Institute's original work, around 20 years ago, was in developing ways of collecting patient experience (vs. patient satisfaction) information. Through the results of surveys of patients it became apparent that there is a disjunction between what health professionals think they do and what patients experience. Physicians and nurses tend to think that we have instructed patients on what to expect when they leave the hospital, the medications they are taking and their purposes, side-effects and potential interactions, etc; but on average about 20-30 percent of patients report that they either haven't been instructed on key items, didn't understand the instruction, don't have a written set of instructions, etc.

I'm sure you are right that the hospital will get "credit" for having instructed you; but at the same time it doesn't seem to have a mechanism to collect regular/routine feedback from each patient to know that the instructions were clear, comprehensive, and understood. Only when such feedback occurs "always" and the results are 100 percent will we have achieved successful transitions and safer, more effective care.

How many planes take off before the pilot or co-pilot repeats back the air traffic controller's instructions and signs off? Roger, over and out.

Steve Schoenbaum

Molly French says
November 4, 2010 at 11:37 AM

Two lines of thoughts as I read Jessie's piece. First, she so eloquently captures the essence of the hospital discharge challenge, in which patients are expected to "transition from complete dependence to complete independence" with very little preparation. There's got to be a better way.

Second, what drives hospitals to do so little? After my dermatologist removed a little mole in her office, I got 5 minutes of detailed instructions (wound care, pain, complications, and follow-up). In contrast, Jessie and others get a few vague recommendations after complicated and invasive inpatient procedures. Why? Is it because my provider is a person, not an institution? Because her medical liability risks are higher if something goes awry? Because there's no hand-off to another part of the system? Because she values strong patient-doctor partnerships?