Reflect on Hannah’s reality

Published in the Courier Mail 12 November 2008

We live in a complicated world and every so often, we come across a story that causes us to stop and reflect. This week, the report about 13-year-old Hannah Jones was one such story.

Hannah has been described as the girl who won the right to die at home. This description is a little disingenuous and unfortunate in the current ethical climate.

Such a description carries overtones of concepts about end-of-life decisions such as euthanasia. But this is not what Hannah has asked for, nor what she has been granted.

In fact, what Hannah has been granted is what you or I have at any time, which is the right to say no to more medical intervention.

So it is a little misleading, however unintentional, to describe it as otherwise.

The reported circumstances of Hannah’s life are as follows: She has spent much of the past eight years undergoing medical treatment after being diagnosed with leukemia and cardiomyopathy when she was five. The treatment regime she was given early in her diagnosis caused a hole in her heart. Subsequent treatment involved a range of drugs and she was fitted with a pacemaker last year, which included another seven-month stay in hospital.

Medical staff have informed Hannah that the only option for a possible long-term solution would be a heart transplant. However, the risky surgery could kill her, as well as make her susceptible to the return of leukemia due to the weakening of her immune system.

After discussing the possible benefits and consequences of surgery, Hannah and her parents decided not to go through with the surgery and to return home. This will mean she will be able to spend time with her family as her body is allowed to follow its natural course, eventually ending in her death.

Her mother, an intensive-care nurse, would seem well-placed to care for Hannah during this time.

However, the Hereford Hospital and Herefordshire Primary Care Trust threatened to apply for a High Court order to admit Hannah to hospital. Why it did so is unclear.

While the reasons behind that may be illuminating for this discussion, the trust has not yet made public comment.

Therefore, we cannot really discuss the response, in the sense that intricacies of this case are unknown, and we cannot posture why medical authorities would have tried to force this young girl into this difficult and high-risk surgery. One would think it a little unusual for a public hospital to increase demand on its surgical load without a good reason.

But in the midst of this perplexing situation, we should not let this conversation be clouded with the end-of-life emotions always bubbling near the surface of social commentary these days.

Death is not a right we can invoke. It is an inescapable condition and one we will all face. Some of us will face death in an instant and some of us will be given warning. But it is a shared experience – common to all humanity – old and young.

It seems Hannah and her family have reached the point where they no longer wish to fight off death, and are willing to accept its inevitability, allowing it naturally to unfold.

They will require the support of family and friends. They will be best served by practical care and compassion. They will need to grieve for the loss they will all face. And in the midst of this sadness, they will need those around them who can bring a message of love and hope.

Hope in the midst of death is too often an uncommon concept. By allowing science to be a master, rather than a tool, society has allowed life to be essentially reduced to mere matter.

Further, in contemporary Western society, it often seems the only answer we hold out to people in matters of life and death is a medical one.

I trust that as Hannah and her family reach the end of medical assistance, they rediscover the essence of life, even in the
shadow of death.

Ruth Limkin is a Brisbane pastor and writer.