Being a patient in the hospital can be very stressful. Your family and friends are worried, too. It helps to know what to expect so you can focus on your diagnosis (what is wrong), treatment (how to get better), and follow-up plans (what to do when you return home).
Most patients stay in the hospital just a short time. Unless the hospital staff recommends a transfer to a short-term rehab (rehabilitation) unit for further treatment, patients are discharged to home. Sometimes home health care services are arranged. While these services can be very helpful, they are for just a short while (a few days or weeks after you leave the hospital). Home health care services also may be limited. For instance, a nurse or physical therapist may visit a few times a week. Or a home care aide may spend a few hours a day helping with your personal care needs such as bathing and getting dressed.
The transition between hospital and home can be hard. It helps to have someone assist you during the transition. This person is called a “caregiver” or often a “family caregiver.” A caregiver can be a family member, friend, neighbor, or someone else you know and trust. The caregiver can help with tasks like setting up appointments, making sure you have and take the right medicines, and getting medical supplies. You may need a lot of help or just a little. Having a caregiver can make you feel more confident and sure about managing your own care.
To make the hospital discharge and transition home smoother, New York State has a new law called the CARE Act. This guide explains what the law means to patients and their caregivers. This guide also includes ways of dealing with situations not covered by the CARE Act.
New York State’s CARE (Caregiver Advise, Record and Enable) Act is based on a law developed by AARP, a group focused on helping older adults and family caregivers. About 30 states now have laws like the CARE Act. Here are the main points you should know:
Studies show that patients leaving the hospital often have trouble remembering important information, such as how to take medicines on time and in the right dose. This can lead to other medical problems. In fact, a common reason patients return to the hospital soon after discharge is because they did not understand how to take their medicines correctly. That is just one of many reasons it is good to have a caregiver help the patient transition from hospital to home. The CARE Act makes the patient’s caregiver a member of the patient’s care team.
The CARE Act applies to all patients who are:
Staff in the hospital ask patients lots of questions. These include questions about health insurance, medicines, allergies, and other medical problems. Hospital staff are also required by law to ask patients:
The CARE Act is new. As a patient in the hospital, you will be asked if you want to name someone as your caregiver. This caregiver must be willing and able to help you transition from hospital to home.
It can be hard to decide who is best to name as your caregiver. Or you might not want to name anyone. Here are points to remember:
Some people provide care to others but never think of themselves as caregivers. They may think that the word “caregiver” only refers to doctors, nurses, or paid helpers such as home care aides. But that is not so. A caregiver can be anyone the patient names to help with the transition from hospital to home.
Once you name a caregiver, hospital staff will add that person’s name and contact information to your medical record. This lets staff know who to talk with about your discharge and follow-up care plans.
In the past, hospital staff may have asked you about such a person, or assumed that the person who brought you to the hospital will also help when you go home. Now the hospital is required to directly ask who the caregiver will be. The person asking about your caregiver may be a social worker, nurse, or a case manager who coordinates your discharge and follow-up plans. This may be part of an assessment of all your needs at home. Sometimes these needs are more complicated than expected when you came to the hospital.
You will be asked to sign a consent form giving hospital staff permission to share with your caregiver some or all of your medical information. This is needed to help plan your follow-up care. You can limit the shared information to just your current medical problem.
This consent form about caregivers is new. You may be surprised since it seems natural that family members will be given information about your condition. But that does not always happen. This new consent form is a way for you to name someone who can get information about your medical condition.
You will also be asked to sign a more general form about how the hospital protects the privacy of your medical information. Some hospitals combine these into one consent form.
As soon as it is known, hospital staff should tell you and your caregiver when you are likely to go home. This may not happen until the day before you are discharged. They should also teach you about what to do and which supplies and services to have at home. This teaching may include how to manage your medicine, take blood pressure, change bandages, give injections, help with bathing, use medical equipment, prepare special meals, arrange transportation, and other needed tasks.
It helps a lot to have a caregiver who also learns about these tasks, even more so if you are not well enough to do these tasks yourself. That way, your main job as a patient is to focus on getting better.
The CARE Act helps in many ways but does not cover all situations. Here are some issues you still might need to figure out:
For those who are caregivers, there are a lot of important points for you in the CARE Act. You may have a lot of experience helping an ill family member or friend, even though you never thought of yourself as a caregiver. Or this could be the first time you are called a caregiver. Maybe this is the first time your family member knows that he or she could use your help.
If you have been providing care to someone for months or even years, you know what is involved. You may even have been with this person during a hospitalization. If so, you have a lot of experience. But this hospitalization may add new and even more challenging responsibilities, at least for a while after discharge. A good way to start is by talking with your family member about why it is important to now choose a caregiver. Explain that hospital staff can talk with your caregiver about the transition from hospital to home.
Here is more to know about what the CARE Act means to family caregivers:
The hospital must inform caregivers as soon as possible about the time of a patient’s discharge. But this may not happen until the day before discharge. As soon as the patient’s health seems stable (getting better, or at least not getting worse), talk with hospital staff about options for discharge. This may be being discharged to home or first going to a short-term rehab (rehabilitation) unit in a nursing home. To learn more about options for discharge, read The Next Step in Care guide Leaving the Hospital and Going Where?
If the patient is being discharged home, the CARE Act requires that hospital staff teach the caregiver about needed tasks. These can include managing medicines, doing wound care, and using medical equipment. This teaching should start as soon as possible but no later than 24 hours before the patient is discharged. The CARE Act does not say who must teach this information, or how. Some hospitals offer videos or written material. Others may have classes or group training. Or a nurse or therapist might teach these tasks just to you. Ask about the kind of training you need and will get. It is good to get started at least one or two days before discharge as there is so much to do when the patient leaves the hospital. Feel free to ask staff a lot of questions, suggest specific ways to help, and tell you about referrals and other needed resources.
Learn more about what to expect at discharge in The Next Step in Care Hospital-to-Home Discharge Guide.
Everyone can help make the CARE Act a success. Here are some ways:
As a patient, it is best to give a lot of thought to who you want as a caregiver before you need one. But even if you haven’t done that, try to think about who would be the best person to help you when you get home.
As a caregiver, work closely with hospital staff to plan a safe discharge home. You can help by asking questions, taking notes, and sharing information about the patient’s home situation that might affect the discharge. Be honest about how willing and able you are to provide all needed care. Tell the hospital staff if you have other responsibilities, any health problems of your own, or worries about doing some of the care needed at home.
The goal of the CARE Act is a safe and well-planned transition from hospital to home. It takes a team to do this well. This team not only includes hospital staff but also patients and their caregivers.
To learn more:
Acknowledgement: United Hospital Fund developed this guide with the generous support of The Fan Fox and Leslie R. Samuels Foundation, Inc.