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".
ęCopyright, 1994, 1995, Jane R. Rosen-Grandon. All rights reserved.
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Last Updated October 17, 1998 by Gary M. Grandon,