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Considering issues of domestic violence and abuse
in palliative care and bereavement situations
by Judy Wright ¹

^{This paper was first published in the International Journal of Narrative Therapy and Community Work 2003 #3}

Seventeen years ago, when my father died of cancer, I decided that I would make it my business to find a job as a social worker in palliative care. This clarity emerged from what I witnessed as a ‘not-so-good dying process’, and what I experienced as the marginalisation of my voice and my sister’s voice – a marginalisation due to gender relations. After these experiences, I carried a passion to try to contribute to making a difference. In particular, I felt strongly that the voices of women need to be welcomed, heard and valued as a meaningful part of the process of death and dying.

It took some time for me to find the job I was looking for, but once I did, I then worked for seven years in palliative care. One of the things I had not predicted was that my previous work experience in sexual assault, domestic violence and child abuse would be so relevant in the palliative care field. Combined with my feminist ideas and practices and my focus on actively seeking out women’s stories, I soon noticed that in the palliative care setting I was hearing about situations of long-term domestic violence and abuse.

These stories came from women who were either living with a life-threatening illness and were in palliative stages, or from women who were the carers of their husbands/ partners who were dying. Commonly, the perpetrator’s tactics of isolation and silencing of these women was only broken when the palliative care team became involved. In every situation, I was working alongside a palliative care nurse in order to separate the woman from her husband so that we could give her some space and safety to talk. We often used ‘social admission’ as a criteria to facilitate an admission to hospital or hospice for a brief time in order to strengthen our access to the woman and provide her with some support and relief. This opened up opportunities for the telling of personal stories of long-term abuse and to hear stories of survival and resilience.

The women I met with gave permission for their words to be made public. In fact, they urged me to tell other palliative care workers about the issues of violence against women so that more workers would notice and respond. In writing down some of these women’s words, I want to acknowledge and honour each woman’s courage, strength and resilience.

Powerful words from powerful stories, told freely in response to a gentle inquiry about how life had been for them. All of the women said that what made the difference for them was that they were given a chance, however small, however brief, to tell in safety what life was like for them, and that they were believed and supported.

The fact that most of these women were older meant that they were isolated from knowing that in the 1980s and 1990s the feminist movement had successfully campaigned to set up specific domestic violence and sexual assault support services. They did not identify with feminist ideology or with the language of domestic violence, but they did know that the abuse was wrong and that they felt worn down by a lifetime of violence.

For most of the women who spoke to me of violence, their lived experience included a lack of family support, a community that didn’t want to know, and gender roles that located women as the property of men:

These attitudes and circumstances often lead to older women having to deal with, not only the violence itself, but also feelings of shame:

My experience of this work left me wondering about how many older women are experiencing violence. An Australian Bureau of Statistics study in 1996 suggested that ‘one in three women currently experiencing violence in partner relationships was over the age of forty-five’ (Australian Bureau of Statistics 1996). Older women’s lives are relatively invisible in our society and, as a result of this, at a later date I chose to work on a mid-older women’s health team. During this work I heard similar stories of violence against older women in the home and some of these stories were recorded and published (Sargent & Mears 2000).

In relation to palliative care, this work raises dilemmas about why is it that violence against women seems so invisible in the field.

• Is it that older women continue to be invisible in society?
• Is it that the voices of women are less privileged than the voices of men?
• What value is placed on hearing women’s experiences of life?
• Could it be that gender politics in medical settings mean that women’s issues are marginalised?
• Does the position of women as carers diminish their status in the eyes of others?
• How does the ‘culture of niceness’ in palliative care, work against seeing and acting on the ‘not-so-nice’ aspects of living and dying?
• How can we ensure that older women from a range of cultures have opportunities for support in relation to long-term experiences of domestic violence.
• How might these and other questions be discussed and what sorts of forums would support such conversations?

To accept that violence against women can be present within a palliative care situation is confronting, yet the population that accesses palliative care services is no different from the general population. In the palliative care literature there are references to ‘dysfunctional families’ (Vachon 1999) but there is little reference to violence against women.

Lorraine Hedtke (2001) mentions in the endnotes of her article ‘Stories of living and dying’ that:

Reading Lorraine’s Hedtke’s comments further strengthens my belief in the importance of naming the reality of abuse in Palliative care contexts. The challenge is for palliative care to keep the issue on the agenda, to educate palliative care staff, and to work for effective responses to situations of violence against women.

In reflecting on these women’s lives, I recall the difference it made to them to know that the abuse was soon to end, either due to their own imminent death or the death of the perpetrator. This knowledge, that the abuse would soon be over, seemed to make a difference in enabling older women to start to break the silence around the abuse they had experienced. There seemed to be a sense of safety for the women in their knowing that soon there would be an end to the violence, and that this supported a movement into a reflective process about their lives.

This positions palliative care services in a unique way in relation to the issue of violence against women. This is an important part of palliative care work and can contribute to making a difference. The voices of women need to be welcomed, heard and valued as a meaningful part of the process of death and dying.

In writing this retrospective review of the conversations I shared with these women, I have appreciated the opportunity to tell the women’s stories again and, in so doing, continue to honour their hope that others would learn from their stories. I wonder what they would think if they knew that, years later, a new audience of people would be reading about their lives and experiences. I wonder what it would have meant to Gladys and to Daphne, both of whom died shortly after telling their stories. For me, this work represented feminist narrative practice.

1. Judy Wright is a feminist narrative therapist. She currently works part-time in the Shoalhaven Sexual Assault Service and has a small independent practice. Judy lives in beautiful Jervis Bay on the South Coast of NSW, Australia, and is enjoying semi-retirement. Judy can be contacted by email: judylw@iinet.net.au

Vachon, M.L. 1999: ‘Emotional problems in palliative medicine: Patient, family and professional.’ In Doyle, Hanks & MacDonald (eds): Oxford Textbook of Palliative Medicine, pp.565-575. Great Britain: Oxford University Press.
 

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