Picture this. You’ve been caring for your sick mother for the last 3 weeks. Last week you had to miss some classes or take few days off work, because her condition worsened. You keep telling her she needs to go to the hospital, she says “After my death.” She’s old school. She doesn’t really believe in doctors. In your culture it is very disrespectful not to listen to your mother or to do anything against her will. So you wait as she wilts in her own bed. You cook for her, you massage her feet, you assist her to the bathroom. You know she would be better off in the hospital, but you can’t make her go. You feel helpless. It’s not the first time this happened. It’s a chronic disease that reoccurs once in a while. Your mother has had five specialists so far and none of them approached your mother like a human being. They treated her like a case study. In isolation. As if your mother had no life outside of the doctor’s office. They disregarded her concerns about her diet, saying that it has nothing to do with the disease; they disregarded her concerns about side effects of medications she was prescribed, too. So your mother decided to stick to the old good herbal medicine and acupuncture. You can’t see much difference in your mother physical health, but she seems to feel better, at least psychologically and emotionally.
Few more days pass by and your mom is in such pain that she can’t take it anymore and she gives in. You take her to the emergency room. Your mother has high fever, enormous pain, she’s dehydrated, exhausted from sleepless nights of the last three weeks and you know she can’t think straight. When the nurse comes to talk to your mom, you automatically answer for her, because you’ve been there, you know what was happening to your mother, you know the exact symptoms, and you know that your mom can’t speak at this moment, because she’s in so much pain. The nurse asks your mom where it hurts, you mom points to her head. You add that she also has abdominal pain, because that’s where she most often hurts. The nurse doesn’t even look at you. She asks your mom if she had fever at home, you mom says she can’t remember, you say that she had fever for the last three days, on and off. The nurse looks at you and asks you who you are, you say you’re the daughter. The nurse nods and she asks your mother why she didn’t go to her doctor, your mother answers that she doesn’t have a doctor. You can see that your mother finds it hard to answer the question. You clarify that she does have a doctor but she is not happy with the care she’s receiving and she doesn’t want to go there anymore. The nurse looks at you and says “I’m sorry miss, but I would like to talk to your mother.”
How would you feel?
Lately, I have been thinking about patient-centred care, as it is being employed in family health teams. Patient-centred care is about involving the patient in decision making regarding the course of treatment, it involves two way communication, and its goal is improved quality of care and increased patient satisfaction. This already sounds great, but I would like to see this expanded to family-centred care. I have lived through, observed and heard similar stories as the one above where family member’s expertise was completely ignored by a health care professional, despite the fact that this expertise was of great value and could provide insight into the patient’s condition that could not be revealed by blood tests, X-rays or other medical tests.
I know I’m reinventing the wheel. Much has been said about this. I just wanted to draw your attention to it, perhaps again. Besides, lifestyle changes are more successful when family members are involved in the change. Let’s include the family, because the patient has a life outside of any office.
