Staying Actively Involved in the Health Care of Someone in Your Care

When you care for someone in the home, you must also manage that person's health care. This means choosing a good medical team, keeping costs down, arranging for medical appointments, and getting the best, least expensive medicines. It also means knowing what the insurance rules are and, most important, being an advocate for the person in your care.

Doctors and nurses can focus on physical diagnosis and may ignore the emotional aspects of care. Sometimes they have little time to consider the spiritual aspects of healing. Although you should consult with professionals about the levels of therapy and support needed for the person in your care, you do not have to accept what they suggest or order. Keep asking questions until you completely understand the diagnosis (what is wrong), treatment, and prognosis (likely outcome).

How to Share in Medical Decisions

In the end, medical decision-making is in the hands of the person receiving care, the doctor, and the caregiver. Learn to take an active role and become an advocate for yourself and for the person in your care. It has been said that a patient is the senior partner in the patient-doctor relationship.

Long-Range Considerations

• Find out how the person in your care feels about treatments that prolong life. Respect these views.
• Help the person receiving care to set up an advance directive and power of attorney for health care.
• Share decisions with the doctor and the care receiver and take responsibility for the treatment and its outcomes.

The Doctor-Patient-Caregiver Relationship

• Be aware that doctors must see more patients per day than they once did.
• Be aware that some doctors may have financial reasons for doing too much or too little for those in their care. Specialists are often the only ones with the training needed to treat a serious or chronic condition, so the doctor may refer the care receiver to a specialist.
• If the relationship with the doctor becomes unfriendly, find a new doctor.
• Respect the doctor's time (you may need to have more than one visit to cover all issues).
• If Medicare is the payer, ask if the doctor accepts Medicare assignment. If not, the difference may have to be paid out of pocket.

Preparing for a Visit to the Doctor

• Be prepared to briefly explain the care receiver's and the family's medical history.
• Take a list of questions in order of importance.
• Prepare a list of any symptoms the person you care for is experiencing.
• Be prepared to ask for written information on the medical situation so you can better understand what the doctor is saying, or bring a small tape recorder.
• You can call the hospital's library or health resource center for help in looking up any questions the doctor does not answer.

At the Doctor's Office

• Tell the doctor what you hope and expect from the visit and any recommended treatment.
• If the doctor tells you to do something you know you can't do, such as give medication in the middle of the night, ask if there is another treatment and explain why.
• Insist on talking about the level of care that you believe is appropriate and that agrees with the care receiver's wishes.
• Ask about other options for tests, medications, and surgery.
• Ask why tests or treatments are needed and what the risks are.
• Consider all options, including the pros and cons of “watchful waiting.”
• Trust your common sense and if you have doubts, get a second opinion.