Patients are being asked to do more and more of the care that was traditionally delivered in a rehab facility or hospital––something that could perhaps be called “Do it yourself medicine.” But Do It Yourself medicine has risks – unless you know what you are doing. In the following, I offer some ideas about how to take on this challenge (without going to medical or nursing school) and suggest a few important questions to ask before discharge.
The perils of DIY medicine
“If it hadn’t been for our neighbor and friend, who happens to be a nurse practitioner, I don’t know what we would have done,” Cathy confided in me.
Cathy’s mom had been discharged from the rehabilitation facility where she had been sent in a very weakened state after a long hospitalization. She was sent home on IV fluids and tube feeds, which her elderly husband, Joe, said he felt he could administer.
But when Joe and Cathy tried to get trained to administer them, they waited for the tube feeding specialist for two hours. Cathy finally had to leave to pick up her son. Her Dad, she said, got about ten minutes of instruction on how to administer her mom’s tube feeds and fluids. “Dad is 75, has no medical training–well, we were all clueless,” Cathy shared with me.
“It took Mary two hours to get all the supplies laid out, to read all the instructions, and then to teach us. And she is a nurse!” Cathay exclaimed. “What would a family without a “Mary” do?
The answer: likely be readmitted to the hospital.
The risks of DIY medicine: hospital readmission and the potential for worse outcomes
And even WITH a “Mary”–Cathy’s mom was readmitted in less than 48 hours. The IV pump failed the first night, Joe didn’t know how to troubleshoot it–and her mom became dehydrated and fell and struck her head.
But all of that could have been avoided with better preparation.
See one, do one, teach one
There is an adage in medical training: before you can master a surgery or procedure, you must:
- Observe one;
- Do one yourself, under supervision; then
- Teach one to someone else.
It seems sensible to me that a family member or friend learning a new and unfamiliar skill that they will be asked to do after hospital discharge should insist on the same sort of education.
If they can spend the night at the facility, that is optimal. At a minimum, the family member who will be responsible for caring for the patient should spend as much time as they can at the hospital or rehab watching the hospital staff –and then they should take time to consider whether they can manage that level of care and availability. Then they should practice doing all of the cares for the patient that they will be asked to do under the supervision of the in-hospital team; then they should “teach it back” to the hospital staff.
That will allow plenty of time for all the relevant laboratory and other tests to come back, too–-tests that might show that it is too risky for the patient to be discharged home prematurely, for example.
If, for instance, in Joe’s case, observing how the hospital staff administered tube feeds and IV fluids to his wife in the hospital would have been a great start to his training; he could then have practiced going through the motions of setting them up and administering them under the supervision of the nurse; and then he could have practiced explaining to someone else (also under supervision) how he would do it.
Families should also have the direct contact phone number for a medical staff person who will be available to them should the device not work–so they don’t need to come back to the ER. In Joe’s case, knowing how to troubleshoot and reset the machine could have solved the problem and improved patient outcomes in his wife.
Other questions to ask before discharge
- Do I feel comfortable with being discharged at this point in time?
- Does my doctor feel comfortable sending me home? Make sure you ask your doctor –and any specialist doctors who have seen you–to confirm with you directly that they are comfortable discharging you.
- What does your home support look like? Who will be there to help care for you–family? Friends? How available are they really? For “solo agers”–elderly people living alone–this is an important consideration
- How will your support person be educated in what needs to be done for you?
- What specialists do you need to see on follow up? Who will make those connections for you–and do you have phone numbers, names and contact information so you can do that when you get home?
If you are being considered for hospital at home–here are a few important additional questions:
- If someone suggests a service like Hospital at Home to you–again, insist on talking to your treating doctor and all of the specialists who are seeing you to make sure that they agree that you qualify for “at home” hospital care. Make sure YOUR doctor agrees with the plan to discharge you.
- Think about the logistics of hospital readmission. If you are considering hospital at home, it is important to recognize that there is the chance you may need to be readmitted to the hospital if things do not go smoothly. How much of a wait was it in the ER for a hospital bed? Think about that. Also: How long of a trip is it from your house to the ER? Fifty blocks in heavy traffic is a lot different than an elevator ride if something goes wrong.
- What does the home support offered by the hospital at home company look like? This Boston Globe letter about a Rhode Island hospital at home experience may not be what is on offer here in Massachusetts; at some of the programs available to the large medical systems in Boston, a doctor is available only via video chat; and often it is an LPN (not a trained nurse) or an EMT who visits the patient at home. I have heard of no hospital at home practice in Massachusetts where a doctor pays house calls every day.
- Technology: a lot of home hospital services depend on having internet connectivity–and reliability. Who will be on call to fix a problem if there is a mechanical glitch? How fast can they get to your house?
- Liability–this article mentions that caregivers, not the hospital, may be liable if something goes wrong. So make sure you fully understand what you and your family are being asked to do.
It is always important to think through what is required when you go are discharged from the hospital. Once you are home, it can be a lot harder to access the services that you need.
In sum–patients need to ask a LOT of questions in today’s medical world, and they may not receive as much guidance as in the past. If you don’t feel sufficiently capable of taking care of yourself or of a family member–make that clear. Ask your doctor to advocate for you or your family member if they need extra time in the hospital or a family member needs extra training. Persistence pays off.
Medical Disclaimer:
All patient and family names have been changed to protect patient confidentiality.
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing and symptom management of all medical concerns.
Photo credit: Roselyn Tirado; from Unsplash.com, free to use and share
