1. WHAT IS FAMILY? Family consists of people who are tied emotionally, spiritually, economically and socially to one another either by birth or by choice. Hospice palliative care defines family as anyone outside the interdisciplinary care team – relatives, friends, neighbours or others -- involved in caring for or supporting the dying person. Each family is different. Its members form a complex system that function based on dynamics and family culture that will define: • the roles of each member of the family – including gender roles • who has authority and who makes decisions for the family and for the dying person • how the family communicates with one another and with people outside the family, including the care team. There are many types of families and many ways to run families. In some families, decision-making is shared; in others, one or two key people make decisions. Some families discuss issues openly and share information, while others do not. How families work may be influenced by culture. For example, in some families and cultures, the eldest son may make decisions for a dying parent. 2. THE FAMILY’S ROLE IN HOSPICE PALLIATIVE CARE In hospice palliative care, the family plays two roles. They provide care and support for the dying person and they also receive care and support from the care team. PROVIDING CARE AND SUPPORT When a family has to provide care for a dying member and face the prospect of someone dying, the normal rhythm of the household changes. Roles may change dramatically and family interactions can be disrupted: • Children become caregivers for parents. • A spouse who never made decisions about family matters or household finances may suddenly be thrust into that role. • The person who always provided emotional support for the rest of the family may now be the one who needs emotional support. • Husbands and wives have to take on intimate care tasks – such as bathing, cleaning or feeding their spouse -- and the familiar relationship as a couple is put on hold.
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