From Dr. Jane's Notebook

Patients Need Patient Advocates

When illness strikes a loved one, our lives are transformed. Almost immediately, our priorities change. Money is no longer a consideration, prior plans are cancelled, and our daily routines become scrambled. Over the past year, I've spent some time visiting friends and relatives in nursing homes, hospitals, psychiatric facilities and at home in their sickbeds. Through these experiences, I've learned a few valuable lessons.

Patients in hospitals or nursing homes needs Advocates. When an individual is sick, they lose a certain amount of personal status. They may be too ill or injured to advocate for themselves, or they may be treated like a child. When a patient is in an institution of any sort, they are often at the mercy of caretakers who are busy. Being sick or injured is frightening enough; feeling helpless only makes the situation worse.
Family Members or Friends can take on the role of Patient Advocate. Those who are close to the patient need not join into the feeling of helplessness. They can communicate with the doctors and staff, and help make notes when information is given. Patients need someone who can speak for them, insure that their needs are being met, and keep track of the treatment plan. Patients also need someone who can organize their friends to help take care things in the person's absence, send thank you notes for cards or gifts, and communicate the patient's status to others who are concerned.
As a Patient Advocate, try to establish positive relations with the staff. When patients are in pain, they are not always easy to get along with. Patients who are rude to staff members often tend to be ignored for longer periods of time and claim that they receive worse treatment than considerate patients. This may be true. Hospital staffs are generally overworked and receive dozens of demands each hour. You can help by being kind to staff members, respectful of their time, and address some of the needs of the patient as appropriate. Ask the staff how you can be helpful. This establishes positive rapport and mutually concerned relationships.
Be repectful of the patient's emotional state. As Elizabeth Kubler-Ross describes, we go through various stages of emotions. First, there is denial ("This can't be happening to me"), followed by anger (the desire to place blame), bargaining ("If I ever get well, I promise to..."), depression (feelings of hopelessness, the desire to die, grief), and finally, acceptance ("I will do my best to recover and resume my life as fully as possible").

These stages will come and go at different points in the recovery process. There will be periods of optimism and times of pessimism. These stages will also be experienced by those who care for the patient. When someone we love is hurt or sick, we also go through periods of denial, anger, bargaining, depression and acceptance. Its helpful to recognize these stages, and not minimize or repress them.

Self-Esteem in also an issue. It is extremely frustrating to be disabled for any length of time. Not only does one lose certain physical capabilities, but sick people also lose self-esteem when placed in a situation of helplessness. As friends, loved ones and patient advocates, we can help the health care facility and insure that the hospital stay is a positive and caring one. Otherwise, treatment received during hospitalization can be traumatic to the individual and further complicate the problem.
Recognize your own resistance to the situation. Its no secret that many of us resist visiting our loved ones when they are sick or injured. It is often heart-rendering and difficult to see them in their condition. But for the sake of their mental health and strength to recover, it is very important for the patient to feel emotionally supported.

Years ago, I came upon a poem which I can only paraphrase now, but it went something like this. "When I broke my leg, you sent me flowers. When I wrecked my car, you sent me funny cards to cheer me up. When I had pneumonia, you cooked me chicken soup. But when I had my nervous breakdown, you never even called".

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Last Updated October 17, 1998 by Gary M. Grandon, Ph.D.