As I lay dying

• Are you among those who wish to know if your illness is terminal? Or would you prefer it if loved ones kept mum about the extent of your condition?

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NOV 04 -

If you were to develop cancer that was incurable, would you want to know? This very question was asked of 256 healthy adults in Kathmandu, and eig-hty percent of them answered ‘yes’.  However, a survey of patients with incurable cancer found that only 20 percent actually knew their diagnosis and prognosis. What would your answer be?

Why don’t families want doctors to tell patients when they have cancer or are going to die? The commonest reason given is “we don’t want them to lose hope, or to become depressed.” Is this true? Is this really what will happen?

Whenever something bad happens to us, we go through a number of stages. The stages may occur in any order and not everyone goes through every stage. Some people initially go into denial, “No, you must have mixed up my test with someone else’s.” Next may be anger, either at doctors, with family or with the gods. Some patients will then start ‘bargaining’—with God or with doctors—looking for a second opinion, or promising to be a better person. Most people will be very sad for a time and some may feel hopeless.

At the end of this path though, a journey of days, weeks or months depending on the person, is a place of peace and acceptance. At this point, a person will have accepted their illness and be ready to make the most of their remaining time.  

This is the time when families can come together, weddings can be brought forward or special trips planned. Old grudges can be forgiven and we can tell our family and friends how much we love and appreciate them. By refusing to tell a person the truth about their illness, we are denying them this important time to say goodbye.

What happens if we don’t tell people the truth, if we hide it from them? The disease does not go away and the person gets weaker and sicker, not understanding what is happening. I have heard patients begging their families to tell them, asking, “Am I dying?” and being told, “No, no, you’ll be fine.” Is this really helping them? The family may decide against further aggressive treatment because the doctor has told them there is no hope, but the patient just sees the family as not caring enough. Sometimes, for this very reason, families take out loans and sell land to pay for treatment, which just makes the remainder of the patient’s life more miserable. There is a conspiracy of silence and everyone suffers.

Research worldwide shows that in many cultures, around 95 percent of people do want to know if they are dying. Of course, this means that there are still five percent of folks who don’t want to know and that is the way they choose to cope. Why don’t you talk about it now in your family, while you are all healthy and well? Find out what people really think and what they would actually want. We will all die sometime. A few minutes of conversation now could give a better quality of life (and death) for everyone in the future.

Dr Butterworth is the Professor of General Practice & Family Medicine at the Patan Academy of Health Sciences