Decisiones de diseño

She thought it was trite, shallow, obscured the realities – some enlightening, many harrowing – that mark the experiences of anyone tracking toward a medically anticipated, institutionally timetabled, death.

‘Not all journeys are equal and the one I’m on is no walk in the park… In fact it is like being forced to walk across the desert with someone prodding you in the back with bayonet.’ I had met the then Director of the Mary Potter Hospice while visiting my publisher and friend Roger Steele in his laconic lair in Brandon Street. After being introduced I told him about Karen’s circumstances and how impressed we were with the staff and services of his organization.

Karen had been electively admitted for a weekend assessment – a sort of get‐to‐know the place, the processes, the people in advance so that when you come for that last visit everyone is on knowing terms. We had enjoyed the thorough rationality of the drinks trolley doing the rounds, bearing oases of gin and tonic, shortly after morning tea. Had eaten a Mediterranean FoodWarehouse seafood pizza, complete with baby octopi, for dinner. With Karen holding court over assembled family and friends. And had found the nurses and doctors very

accommodating. One in particular, whom Karen thought was charming but in desperate need of a clean lab coat, asked her straight off what could they do to enhance her time in the hospice, when she returned to die.

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‘Drugs,’ Karen replied looking at the doctor directly, holding his gaze. ‘Morning, noon and night.’

The doctor chuckled. Put his hand on Karen’s and said ‘With lashings of ginger beer?’ ‘No, just drugs and lots of them.’ Karen’s gaze was unwavering.

The hospice director told me he knew Karen. That Karen was still very angry and what she needed to do was accept her impending death.

At this time Mary Potter Hospice ascribed to Kübler‐Ross’s24 _{five stages of grief model, in}

which individuals informed of their terminal status experience episodes of denial, anger, bargaining (for a reprieve), depression and acceptance. Kübler‐Ross’s model of staged responses is not meant to be regarded as linear. Although Kübler‐Ross did not advocate tracking through and negotiating each stage in consecutive order, calm and rational acceptance is nevertheless the ultimate goal (which is just as well as continued denial only leads to final disappointment).

In many respects Kübler‐Ross’s model introduced a healthy dose of emotionality and

humanism to the medicine of dying and later on to the psychology of grieving. However, it still represents the era of post‐WWII American modernity, rationality and self‐reliant

individualism in which it was generated. Accordingly the dying and the grieving individual needs to reach the logical nirvana of acceptance if they are to have any hope of successfully transitioning, or ‘moving on’, to fulfill their rational‐given roles – one as a dead person, the other as a re‐functioning member of society.

Little countenance is given, however, to death or society being senseless options in the first instance. Admittedly death is physically unavoidable, yet in our current world of secularism and resolute belief in the progressive elements of capitalism it is characteristically cast as a permanent end to the good life. Not as some form of transitional phase toward transcendent bliss or eternal life as promised by many religions. Consequently death now signals a one‐way ticket to being a non‐person, forever trapped in a non‐life. A transition to nothing, to non‐ existence, to insignificance, to no value – earthly or divine. Furthermore the good life is

promised, but rarely delivered by contemporary society. Many of us are, therefore, condemned to die anxiously, wondering if we have actually achieved any good, if our life was in anyway worthwhile; or if we have achieved the good life, in part or sum, then why we must now relinquish such hard‐won gains. So on both counts – death and society – appear as disappointments, failures doubled. And as such, raging against both seems an appropriate stage to dwell in.

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On returning home I told Karen of my chance meeting and of the director’s comments about her need to accept she was dying.

‘But I have accepted that I’m going to die,’ she protested.

‘I accepted this fully shortly after they told me my condition was terminal. And besides Kübler‐ Ross is not linear. You don’t go from denial through anger, then on to bargaining and

depression to finally achieve acceptance and to die calmly. It is not about a simple signposted journey to death..

Karen was now angry.

‘And, what’s more, acceptance doesn't exclude anger, doesn’t mean that I have to be happy about dying. Happy about leaving my family, leaving you, losing out on seeing the kids grow up. I have accepted… I know, and I am planning, that I’m going to die, and I am bloody angry about the whole thing.’

Dylan Thomas would have undoubtedly concurred with such a gentle rage.

31. Karen was downstairs sleeping. In our bedroom. In the muted January sun. Curtains drawn,