Caregiving at the Hospital

Approved by the Cancer.Net Editorial Board, 04/2015

Key Messages:

  • As a caregiver, your role continues even if a person you are caring for needs to stay in the hospital.
  • Talking with doctors and organizing health information are important tasks while the person you care for is in the hospital.

As a caregiver, you may feel overwhelmed by caring for someone at the hospital. In addition to compassion and concern for the person you care for, you may have stressful or negative feelings. You may worry that you won’t be able to handle new tasks. You may also feel guilty about any negative feelings. However, you can still make sure the person you care for receives the best care possible while in the hospital.

Tips

Taking the following steps can make a hospital stay easier to manage for both you and the person with cancer.

Be an active part of the health care team. As a caregiver, you are an important part of the health care team. Provide information about the person's health and care preferences to team members. This information will help the doctors and nurse provide better care.

Reach out to nurses. Get to know the nurses who are caring for the person with cancer. Let them know you will be the point of contact for the person with cancer. Nurses are excellent sources of information and support who can answer many of your questions. They can provide practical tips for caregiving and give you informational materials. They can also help you understand medical procedures and hospital processes.

Talk with the attending doctor often. Meet with the attending doctor and explain that you want to be informed of important test results and medical decisions. In addition, give the doctor your contact information. As a caregiver, this information should be in the patient's hospital record. You will also want to find out the best way to reach the doctor.

Meanwhile, keep a running list of questions. Find out when the doctor visits patients so that you can get your questions answered. It also helps to write down or record the answers. Many hospital rooms have whiteboards you and the medical staff can use to write questions or communicate other information. If you don't understand what the doctor is saying, ask him or her to provide further explanation. It's okay to speak up.

Meet with a hospital social worker or case manager. A social worker or case manager can help many other ways. This help may include understanding insurance issues, finding financial support and patient transportation, and coordinating care between several doctors. They can also provide emotional support and information on local caregiving resources. At the end of a hospital stay, they often help with planning issues, such as follow-up care.

Get organized. As a caregiver, you are often responsible for many tasks. These can range from making appointments and filling prescriptions to handling insurance and payment issues. Organization can help you avoid feeling overwhelmed by all of the information that you have from the hospital.

You may wish to create a system for filing information and paperwork. A simple three-ring binder with folders and tab is one option. This will help you to quickly find what you need, saving time and reducing frustration. In addition, keep a list of the patient's medications and allergies with you. Include each medication's name, purpose, dosage, and schedule of doses.

Review and share legal documents. Advance directives are legally binding instructions that explain the medical treatment preferences that the person with cancer would want upheld if he or she became unable to make these decisions. Advance directives often include the following documents:

  • Power of Attorney. In this document, a person names a health care proxy — also called a health care agent — which is another person who can legally make health care decisions on the patient's behalf if he or she is unable.
  • Living Will. This written set of instructions outlines the types of life-sustaining end-of-life medical care a person would or would not want. A living will can include a do not resuscitate order (DNR), which instructs medical personnel to not give cardiopulmonary resuscitation (CPR). CPR is the attempt to restart a patient's heart and/or breathing if it has stopped. The patient's doctor or other health care provider must complete and sign a DNR order. In some states, out-of-hospital DNR orders are also called comfort care DNR orders or physician orders for life-sustaining treatment (POLST). They allow EMS personnel to give medications to relieve the symptoms and side effects of cancer and cancer treatment.

Make sure that these documents are in the patient's medical record. If the person with cancer does not have these documents, talk with him or her about creating them. It may be possible to complete the forms in the hospital.

More Information

Questions to Ask the Doctor

Caregiver Support

Additional Resources

Caregiver Action Network: Caregiver Toolbox

Family Caregiver Alliance: Hospital Discharge Planning: A Guide for Families and Caregivers