Caregiving at the Hospital

This section has been reviewed and approved by the Cancer.Net Editorial Board, 11/2012

Key Messages:

  • If a person you care caring for needs to be hospitalized, you still have an important role as a caregiver.
  • Providing care in the hospital may be unfamiliar to you, but there are several ways you can stay involved, such as helping with communication and organizing information.

A caregiver may feel overwhelmed by caring for someone at the hospital. As a caregiver, you experience a range of emotions, such as worry over your ability to handle new tasks, guilt about any negative feelings you may have, and compassion for the person who is hospitalized. A caregiver can still help make sure that the individual receives the best care possible, even when a person with cancer is in the hospital.  For example, the caregiver can communicate with the person with cancer and the health care team so everyone understands each other, as well as provide support to the patient.

Tips

Providing care in an unfamiliar setting is challenging, but taking the following steps can help make a short- or long-term hospital stay more manageable for both the person with cancer and the caregiver.

Be an active part of the health care team. As a caregiver, you are an important part of the health care team, which may include an oncologist (a doctor who specializes in treating people with cancer), an attending physician (the doctor responsible for coordinating the patient's care throughout the hospital stay), a surgeon, nurses, and a social worker, among others. Seek opportunities to provide background information about the person's health and care preferences to team members so that they can better evaluate and treat the patient.

Communicate regularly with the attending physician. Introduce yourself to the attending physician and tell him or her that you want remain informed of important test results and medical decisions. In addition, give the doctor your contact information — which should also be included in the patient's hospital record — and find out the best way to contact the doctor. Meanwhile, keep a running list of questions and find out when the doctor makes rounds (regularly scheduled visits to patients) so that you can get your questions answered. It also helps to write down or record the answers. Finally, if you don't understand what the doctor is saying, ask him or her to provide further explanation. It's okay to speak up.

Reach out to nurses. Get to know the nurses who are caring for the person with cancer. Nurses are excellent sources of information and support who can answer many of your questions. They can also provide practical tips for caregiving, help you understand medical procedures and hospital processes, and, in some cases, give you informational and educational materials.

Meet with a hospital social worker or case manager. These professionals can help guide caregivers throughout the hospital stay and help with discharge (release from the hospital) planning issues, such as follow-up care. Often, they can provide assistance to caregivers in numerous other ways, including helping with insurance issues, arranging financial support and patient transportation, coordinating care among several doctors, and providing emotional support and information on local caregiving resources.

Get organized. As a caregiver of a person with cancer, you may be responsible for organizing medical information, making appointments, filling prescriptions, getting test results, learning about treatment options, and handling insurance and payment issues, among other tasks. Organization can help you avoid feeling overwhelmed by all of the information that you are given in the hospital. You may wish to create a system — which can be as simple as a three-ring binder with folders and tabs — that allows you to file information and paperwork. 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 usually 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) — the attempt to restart a patient's heart and/or breathing if it has stopped. A DNR order must be completed and signed by the patient's doctor or other health care provider.

Make sure that these documents are included 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 necessary forms in the hospital.

More Information

Questions to Ask the Doctor

Caregiving

Additional Resources

Family Caregiving 101: Communicating Effectively in the Hospital Setting

National Family Caregivers Association: When Your Loved One is Hospitalized

National Family Caregivers Association: Improving Doctor/Caregiver Communications

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