As a family caregiver, your critical role isn’t limited to the home. You are also an important part of your loved one’s care when he or she is visiting the doctor in clinic or is receiving care in the hospital. The following information reviews the roles of certain staff and doctors, what goes on in the hospital and clinic, and some helpful tools to giving care in these settings.

• Getting Care at a University- UCSF Medical Center
• A Multidisciplinary Medical Team
• Caregiving in the Hospital
• Caregiving in the Clinic

Getting Care at a University- UCSF Medical Center

UCSF’s Moffitt-Long Hospital is part of a university that trains health care professionals, includes many ongoing research activities, and hosts health students for their clinical training. It is a full-service hospital with many more layers of services than a community hospital. Here patients are cared for by medical students, interns, residents, fellows, and nursing students, under the direction of a primary doctor. 

At UCSF, attending physicians generally have continuity of care with patients, meaning they treat the same patient in both the hospital and clinic. However, a resident physician who works in the hospital may not see a patient again after hospitalization.  Direct physician communication, inpatient (hospital) charts and outpatient (clinic) charts serve as communication links between the two services.

Be informed about your loved one’s medical history, current treatment plan, and, most important, medications, so you can correct inaccuracies if they arise. Remember, all patients have the right to view and have copies of the information in their chart. Ask the nurse or the attending physician for access to them so you can make copies for your files, or enter important notes.

A Multidisciplinary Medical Team

Medical care becomes complex when a person receives a complicated diagnosis like a brain tumor. The care of your loved one will be provided by various hospital staff members as well as a team of specialists and rehabilitation therapists (links to separate pages?) who address the patient’s needs both within the hospital and also once the patient returns home.

Caregiving in the Hospital

Hospital Admissions

Before your loved one is admitted to the hospital, an admissions counselor may call to obtain preliminary information, provide important information regarding the hospital stay and answer questions. The doctor also may schedule routine medical tests, such as laboratory tests or X-rays, before hospitalization. Other routine tests may be done on the day of admission and throughout the hospital stay. Most hospitals have Patient Pre-Admissions Guides to provide families with specific information on the hospital’s services. You may obtain a copy of this through Patient Services.

Medical Team Schedules

Once admitted into the hospital, patients are typically seen by housestaff and attending physicians. After the initial evaluation, patients are generally seen by physicians on a regular daily schedule called “rounds.” It is helpful to know your loved one’s doctors’ rounding schedules so that you can be present to ask questions when they visit.

What to Expect When Your Loved One Has Surgery

Knowing what to expect when your loved one has surgery, including timelines of procedures, tests, and hospital stay, will prepare you and reduce your stresses. The following is a list of what a patient’s pre- and post surgery may look like :

1. The patient is admitted to the hospital the morning of surgery.
2. The patient goes into the Intensive Care Unit (ICU) after the surgery.
3. The patient is often transferred out of ICU to a regular floor bed the next day.
4. The patient should be eating and increasing activity levels as he or she is able.
5. There typically will be a post-operative MRI (magnetic resonance imaging) within 48 hours of surgery.
6. The Neuro-Oncology doctor will see and discuss their role after surgery.
7. The patient may return home in about three days if:
   -pain is controlled on oral pills
   -he/she is eating food, drinking fluids, going to the bathroom and walking safely independently
8. Patients routinely go home before receiving a pathology report on their tumor (the extent of the tumor and whether it is cancerous, or malignant).
9. Neuro-Oncology doctors will contact the patient when the final pathology is known and treatment plan is formulated.
10. The Neuro-Oncology team sees the patient typically within two to three weeks and assumes care, except for issues related to the surgical incision.

In the first two to three weeks after surgery, call your neurosurgery team with questions or concerns. From that point on, call either the neuro-oncology team, your local treating oncologist, or the radiation MD. You may call and ask for the surgical coordinators first, so they can help you figure out whom to speak with.

Preparing for Hospital Discharge

Once the surgery is over, you will discuss discharge plans with your loved one’s health care team, including the services and treatments your loved one will need once they leave the hospital.  A patient may require nursing care or physical therapy at home after hospitalization. If your loved one is not physically able to return home upon discharge, staying in a skilled nursing facility or rehabilitation hospital may be necessary for some period after hospitalization. Before leaving the hospital, you can schedule an appointment or ask to page your team’s social worker or case manager.

Caregiving in the Clinic

Doctor’s offices and clinics are similar in many ways, except that a clinic is usually the outpatient service of a larger health system like a public health department or university medical center.  Clinics, like those at UCSF, often have a variety of health services available such as social workers, physical and occupational therapists, and mental health services. The health facility you visit may be determined by the location of your doctor or where your health plan allows.

Preparing for a Doctor’s Visit

Time is limited in busy medical practices for patients with serious and sometimes complex medical issues. Appointment times vary from 30-45 minutes for an initial visit to 15 minutes for follow-up visits. Click here to learn tips on preparing for your doctor’s visit in advance.

On the Day of the Visit

• Bring your health care binder with your questions, treatment log, and medication log to review with the nurses or doctor.
• At the beginning of the visit, let the doctor review the list of questions you have so that he or she knows which issues to address (or can make plans to address them at another time).  Your doctor will answer many of your questions during the course of the visit, so you can usually save asking many of your questions until the end of the visit.
• You may find it helpful to bring an audio recorder to your appointment so that once you are home, you can review important information discussed. This will also help to remind the doctor that this is new information for you and your loved one. Be sure to ask your physician first if he/she is comfortable with recording the conversation.
• When you feel you need more information than time will allow, ask the doctor or nurse to recommend reading material or websites to help you understand.
• Bring questions about insurance claims, billing, and other administrative matters to the administrative personnel - avoid using the limited time you have with the doctor to discuss billing and insurance issues.
• Nurses are valuable members of your loved one’s medical team and can answer questions about the daily issues you face at home. Get to know them, and don't hesitate to ask them questions.
• Bring the contact information of your local treating physician or your referring physician to your appointments so that the clinic staff can communicate with them about important health information when necessary.
• Write down contact information (phone numbers, email addresses, clinic hours) for nurses and physicians you’ll be working with. 

Communicating with the Medical Team

Although some of these topics may be uncomfortable to talk about, it is almost always very helpful to get the issues out in the open.  Some physicians raise serious issues like side effects and prognosis, while others may wait until you bring them up.  There are no questions or concerns about your loved one that anyone should consider silly or trivial.  All of your questions are important ones.

Keep in mind that not all questions can be answered.  In the treatment of serious medical illness, even by world-class doctors, some things remain unknown. Your doctors and nurses can help you deal with the ambiguities and uncertainties of medical care. 

As a caregiver, you have a valuable role as a facilitator between your loved one and the doctor. This is a very important role, particularly if your loved one needs help learning how to communicate with the doctor.  You can also make sure the doctor’s recommendations will be put into action.