Heroic Medicine, Confused Grief
Medical advances of the past century have changed the moral and emotional landscape for the terminally ill and for those who are close to them.
For millennia, people with severe conditions either recovered or died quite soon. This was the context in which our attitudes towards dying and death developed.
Compared to that timeline, the remarkable changes in medicine in the past century have been sudden – too sudden for ethics to keep up, as we see from controversies over euthanasia and over the provision or withdrawal of ‘extraordinary’ or ‘heroic’ medical interventions.
So too, our emotional faculties and vocabulary have had difficulty keeping up. What does it mean to truly care about someone dying over a period of eight weeks? We know the answer. What does it mean if someone we love is diminishing before our eyes for eight years? Few of us know the answer.
And when the dying ends, how do the bereaved and how do the mourners react? Are the traditional rituals of passage – the wake, the funeral, the attendant words and prayers – appropriate to the circumstances of prolonged dying?
In June 2005 our family experienced the loss of a matriarch at the age of 87. Uncommonly lively until 80, the bad side-effects of an operation diminished her inexorably over nearly seven years.
Her death was gradual, not sudden. It was expected, not a surprise.
This contrasts with four earlier deaths in our family. Our other matriarch, elderly and active but weakening, became afflicted and died two months later – this was the expected and speedy demise familiar in earlier times. Our patriarchs both died of heart attacks – their deaths were sudden but not surprising. Our great tragedy was the loss of a son at 22 in a sports accident – a sudden and wholly unexpected death.
In all four of these cases, reactions within our family and among friends were fitting. Whether it was the crazy-making anguish over the death of a vibrant young man, the sudden collapse of part of our world when a father dies of a heart attack, or the wistful goodbye to a mother over two months – we had the emotional equipment to react and our friends knew what to do to help us.
The most recent situation has been different, both for us and for our friends.
In the traditional, age-old mode of dying and death, the key elements of how the bereaved react to the death of a loved one include:
– shock (possibly panic-stricken, even hysterical), grief, perhaps anger (Kubler-Ross has described this landscape);
– regrets at what was left undone, unsaid and unresolved (or relief that this is not the case);
– bewilderment (even fear) about the future without the loved one.
Mourning friends may also feel shock, but more in the nature of surprise than hysteria or panic. They too may have regrets, depending on their relationships with the lost friend. These lost relationships may also leave them dismayed about some aspects of their own future.
What the bereaved persons need to do is name their feelings and accept them. They wish for social consolation; some also seek spiritual consolation. What the friends, the mourners can do is help them to name and accept those feelings, provide social comfort, and share their belief (if such is the case) in various sorts of spiritual consolation.
Such is the immediate aftermath of the death of a loved one. As time passes, new emotions and desires emerge. The bereaved individuals deepen their self-understanding; they adjust their outlook and way of living in the world without the loved one. They search in memory; they might honour, preserve and celebrate that which was best in the loved one. They might come to terms with negative memories.
In the contemporary situation of the prolonged, gradual death of someone being sustained by sophisticated medical intervention, the immediate family is not shocked (except those members who have been in denial). They have already grieved as the formerly full person slowly declined. Anger has already been felt. There has been time to speak and complete and resolve (although actually doing so is very difficult). The future has already been anticipated.
The grief has a different nuance. It is partly ‘now’: sadness at the finality of death. It is also retrospective: sadness at the long dying and at the suffering of various types that the loved one has endured over a long period.
Further, there is a feeling of closure. For family members who have been attentive through the long dying, there is gratitude at the final release of the loved one from suffering and at their own release from the profound pain of watching someone die slowly. (An image of closure that came to me very soon after my mother’s death was the Ite, missa est that ended the Catholic Mass in Latin: Go, the mass is ended, is completed. I thought that for her this could now be Ite, vita est: Go, your life is completed.)
But not everyone knows what this is like. Many friends and other mourners at the wake and funeral have not been through a similar situation. They may be unable to recognize and name the true feelings of family members. They may also guess that the traditional expressions of comfort, which focus on shock and the onslaught of grief, are inappropriate. They may sense the relief and closure being felt by the family but they think it would be callous to say “You must feel relieved…”
As friends stammer in confusion at the wake, the family members may resort to pretending to the ‘traditional’ feelings, just to end the awkwardness. It’s polite to thank a mourner for whatever is said, no matter how far off the mark.
This is not a black-and-white matter. At some moments and from some people, as my brother has pointed out to me, the ‘traditional’ words in fact do feel comforting, even if off the mark. They suggest that the age-old feelings and rituals are still to be respected. They touch deeper currents of our being, below the ‘realistic’ assessment of a loved one’s stages of decline, ‘quality of life’ and so on.
Further (again an observation from my brother), if a dialogue is possible, it can move from the traditional words of consolation, through a rejoinder of the contemporary sort (she was ready after five years of decline, it was time for him to go because he never liked to be inactive…), to conversation about relief, peace and gratitude that is appropriate to this sort of death.
I poured myself into the rites of passage after my mother’s death, but more to honour my mother and to give others a satisfying experience. I was not particularly engaged, just exhausted. Only those who knew – who had had contact with her during her long decline, or who had accompanied me in my toil, or who had done the same in their own families – only those who knew were able to provide words of comfort that really touched me.
It had been nearly seven years of constant worrying about care arrangements; sadness during and after every visit with her; the bittersweet feeling of having power of attorney to make every decision on behalf of one’s own mother.
In the later stages, while she lost both her memory and her engagement ‘in the moment’, I focussed on just a few objectives: that as far as possible my mother should feel the love, respect and gratitude of others and that she should not experience pain or anxiety. Articulating these objectives eased my confusion, but fulfilling them was exhausting.
I had the profound consolation of holding her hand as she died.
Six weeks after the funeral, three dozen people joined my wife and me in a celebration of Mom’s life in her ‘second home’ community where she had lived for up to four months annually for 34 years. This occasion was both poignant and joyful. Most of those who participated knew my mother very well but knew little or nothing of my wife and me. Thus the focus was on remembering and honouring someone whom they valued. This touched my own feelings of closure as I looked to the future with fond memories and a desire to keep alive the things that best honour my mother.