Every single day that I work, I see a lot of really sick people. But what always surprises me, is that even when they are told they need hospice services, told that there is nothing more that can be done, I hear two questions over and over again.
They are, "Am I getting better?" and "How much longer do I have?"
The first question is always hard. I try to be honest, but am also careful not to diminish whatever small shred of promise is left of a miracle that may be hanging there. Of course they are not getting "better". Many are just hoping today is the day that they are not getting worse.
Many times the answer to "am I getting better" is based on what I observe.
Yes, the swelling in your legs is getting better.
Your blood pressure is good today.
The pain medication seems to be working well, let's keep that dose for now.
Your lungs sound clear, your breathing seems better today.
Your appetite is improving, that is good.
So I answer the question without really answering the question.
I don't mean to deceive, but I do need to tread lightly.
I also have to answer that first question a lot to the family. They are anxious for any good news. Any shred of hope. Another day free of the dread that comes knowing that it is close to the end. They are much more anxious about hearing any news. They ask every nurse or home health aid or social worker that comes in contact with their loved one. They look for contradictory answers. They cling to every bit of hope. They search the Internet in vain.
It is heartbreaking.
Sometimes, well, many times, we have to be honest and just say that, no, they are not getting better.
Of course, then the next question is, "How much longer?"
Often the doctor has told the patient or their loved ones that they have a couple of months or a couple of weeks. But that timeline has come and gone, they are still on our service and now they are starting to tire more easily, eat less frequently, drink less often. Sometimes the patient will ask me directly, but most times it is the family.
I hate that question. I never can know for sure. People are all different. Their life energy is all different, even though many may have the exact same diagnosis, the exact course of treatment. You can never judge one case based on another.
I usually ask them what they think. The patient always seems to know. They just want either verification that that are right, or some hope from me that says, no, not yet.
I always answer as honestly as I can. I am never glib. I never say things like, "Only the good Lord knows." (even though that may be true)
I take into consideration their condition. How often they are eating, drinking, going to the bathroom. If they have other complicating health factors that could make them more vulnerable to multi-system failure. I take into consideration their age as well.
Then I ask them if they really want to know.
Most say, "I already know." And then they tell me. Usually they are right.
The family is a different story. They are making plans. They want to know when to call in friends, family from afar. When to make funeral plans. They want to know for more practical reasons. And many times, until it is closer to the the very end, we may not know exactly, so we guess.
I am pretty good at estimating now. I hate that I am getting better at this. It means I have seen too many deaths. And that is never good.
I often wonder if I will want to know. If I want some young 30 year old surgeon, with his whole life ahead of him, to read me some vague statistic about the end of my life.
I think not. I don't think I will ask.
But I will probably know anyway.
And I will be there hoping for a miracle as well, just like many of my patients do.
Hope and miracles should never be trampled on.
Imagination is more important than knowledge. ~Albert Einstein
Today I bent the truth to be kind, and I have no regret, for I am far surer of what is kind than I am of what is true. ~Robert Brault
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