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The gift of accompaniment

Mark Green  |  21 August 2018

illustration by Becky XieA number of Australian state governments have recently debated, and voted on, euthanasia legislation. Catholic health care organisations like Calvary Health are sharing their experiences of accompanying people through palliative care to urge politicians and community leaders to reconsider their approach to death.

When Michael wasn’t able to play his trumpet anymore, he wanted to give up on everything else, too. He didn’t know whether to be angrier at the cancer attacking his body or the dementia attacking his mind. Never had Michael felt more helpless, more pathetic in his illness than when he first realised he would never play again.

All there was now, he thought, was suffering and death. Nothing but for his deterioration; then more doctors, more drugs and treatments, then death, then nothing again. So the trumpet – something that had defined his entire life – was swiftly boxed up and discarded, deep under the house. Michael had decided that he was no longer himself. Michael had decided to die.

Each of us lives with our own vulnerabilities and unique circumstances that may inform our particular kind of suffering. Until now, however, we have not publicly contemplated eliminating this suffering by making it lawful for a person to take his or her life and for a doctor to assist. For many, their grief and loss is not relieved by medicine, but rather through the solidarity of presence, the enterprise of research, imagination, creativity and grit, together with the multiple acts of service of those who give to those who have not.

Palliative care and end-of-life care, for example, aim to treat the physical, psychological and social difficulties associated with life-limiting illnesses and dying so that the person can live as well as possible, whatever that might mean to them and their family members. This is how we have assisted those who experience loss and grief and face their death every day – until now.

Months later, Michael asked for his trumpet again. Now in a hospital bed, set up in the living room at home, Michael was surrounded by his family: his eldest son with the twins who had just started school; his daughter, recently remarried and seven months pregnant with her first child; and the youngest boy who, brain damaged in a riding incident, had made huge strides in learning to speak again. His situation was different now. He was dying. And he knew it would happen soon.

Despite every disappointment, frustration and wave of pain he had endured throughout the grieving of his deterioration, Michael knew what would remain were the things he could count on most: the love of his family, and the memory of an imperfect life and an imperfect death, lived as only Michael could live it. Michael asked for his trumpet.

Strangely, nothing mattered more to Michael than the ‘right now’ he had wished to deny himself months earlier. Michael held his trumpet close to his chest. The brass had worn in places that made this instrument uniquely his. Neither of them were what they once were: Michael was now an old, sick and dying man; the trumpet bore the scars of playing music for 40 years.

Michael arrived at the end knowing he was loved, that he had loved, and knowing that when he was at his sickest and most vulnerable, his care was a privilege to all those who had accompanied him. This was a sense of peace he had never expected to arrive at. But here it all was, he had arrived.

Michael died just before breakfast, at home, on a Wednesday morning in December. He lived and died with cancer and dementia. While these diseases had an impact on Michael’s ability to do the things he had once loved doing, they didn’t destroy the human being – the person that was Michael, beneath the disease. While he had once wished for nothing else but to end his life, at a point his suffering had felt unbearable, the months and weeks that followed offered Michael and his loved ones surprising opportunities to heal and discover meaning in life he never thought possible.

Rather than assisting Michael to ingest a substance to end his suffering by ending his life, his family and carers were allowed the opportunity to accompany and care for him until the end.

This could all have been so different. If he lived in Victoria in June 2019, Michael might have been tempted to end his life. This he did not do. He gifted his family and carers with the opportunity to accompany and care for him until the end and be part of his rediscovery of self.

Calvary will continue to accompany the sick and dying with holistic person-centred health, aged, and community care as it has in Australia for the past 130 years.

Mark Green is National Director of Mission for Calvary Health Care.

Illustration: Becky Xie

 

Topic tags: healthycommunitylife, catholicsocialteaching

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