The Case for Palliative Care Services: Who Cares for the Dying?

By Auger, Jeanette A.; Day, Dian | Herizons, Spring 1996 | Go to article overview

The Case for Palliative Care Services: Who Cares for the Dying?


Auger, Jeanette A., Day, Dian, Herizons


The Case for Palliative Care Services: Who Cares for the Dying?.

Throughout history, in all cultures of the world, women have cared for the dying. Within the private sphere of home, community and village, women are recognized as the primary knowers of how to care for, nurture and support people who are dying.

In the public realm of institutions and professions, care of the dying takes place within a set hierarchy of decision-making. Within the field of palliative care - a philosophy and practice of care for the terminally ill - women make up the vast majority of volunteers. Many are seniors who have taken on this task because they have experienced the death of family members and friends, and want to make sure that others have a positive experience.

Women who volunteer to work with the dying represent all ages, races, sexual orientations, social backgrounds, occupations, and professions. Some come to this work due to personal experiences with deaths of loved ones, others because they want to be part of the move towards care for the dying which is patient-centred. Others see palliative care as a social movement, similar to that of natural childbirth.

In contrast to the natural birthing movement, which, because of the medicalization of childbirth, has been dominated by male doctors, the modern palliative care movement was originated by women like Dame Cecily Saunders in the UK in the late 1960s, and Elizabeth Kubler-Ross, who is the United States in 1969 published her first book On Death and Dying. In her extensive work, where she and her students interviewed thousands of people who were dying, Kubler-Ross alerted us to the idea that the dying were not being adequately cared for in traditional hospital settings. Although neither Saunders nor Kubler-Ross claim to be feminists, their revolutionary work with the dying has attracted countless other women who recognize that they can provide a more equitable way of caring for the dying.

Palliative care is provided within people's own homes, but people are also cared for in hospitals, nursing homes, or in community care facilities. One of the primary goals of palliative care is to provide a good quality of life. This includes pain and symptom management, making people feel comfortable, companionship and respite care for other caregivers, and just "being there" for all those involved in the dying process.

While recognition is given to those working in formal palliative care settings, there is no similar recognition of the contributions of those in the voluntary and informal sector. Workers who are unsalaried also provide essential services to the dying.

Palliative care is not viewed within the medical establishment as real health care. And, because it is often provided by female volunteers, it is also undervalued, under - or not paid and has little status in the medical hierarchy where cure, not care, is of paramount importance. Even though medical practitioners pay lip service to the benefits of palliative care programs for the dying and in spite of their increased popularity, funding for palliative care remains terminally low.

Volunteer palliative care providers receive little, if any, formal recognition. As a result, frustration around their lack of power to improve the quality of life for clients is common. The nature of the work - confronting the end of life - means that workers experience intense grief as well as intense joy.

Women often become involved in palliative care because of events in their own lives. For some, their involvement begins as a positive way of working through the feelings of anger they experienced, either at the death of a person they cared about, or the way their treatment was handled. Others recall grieving for a loved one at the same time as providing them with care. Often they did not receive the care and support they felt they needed and they are now committed to giving others what they didn't get. …

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