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jillian on Apr 6, 2010 in
Issue 1, March 2010,
Volume 09 |
Comments Off on Living on Hold in Palliative Cancer Care
Anna Sandgren, RN, M.Sc.N., Ph.D. Student; Hans Thulesius, MD, Ph.D.; Kerstin Petersson, RNT, Ph.D.; and, Bengt Fridlund, RNT, Ph.D. Abstract The aim of this study was to develop a classic grounded theory of palliative cancer patients and their relatives in the context of home care. We analyzed interviews and data related to the behaviour of both patients and relatives. “Living on hold” emerged as the pattern of behaviour through which the patients and relatives deal with their main concern, being put on hold. Living on Hold involves three modes: Fighting, Adjusting and Surrendering. Mode being may change during a trajectory depending on many different factors. There are also different triggers that can start a reconciling process leading to a change of mode. This means that patients and relatives can either be in the same mode or in different modes simultaneously. More or less synchronous modes may lead to problems and conflicts within the family, or with the health professionals. Keywords: adjusting mode, fighting mode, grounded theory, palliative care, surrendering mode Introduction Receiving a cancer diagnosis requires emotional and physical adaptation to a new situation (Flanagan & Holmes, 2000) and when the cancer is incurable, both patients and relatives may confront a life crisis (Kristjanson & White, 2002). Powerlessness and helplessness are common feelings among dying patients (Sand, Strang, & Milberg, 2008), but at the same time they can experience hope and quality of life (Melin-Johansson, Odling, Axelsson, & Danielson, 2008). Patients want to be treated as persons not as diseases (Wenrich, Curtis, Ambrozy, Carline, Shannon, & Ramsey, 2003) and cancer patients want palliative care to be based on safety, participation and trust (Harstade & Andershed, 2004). Adequate information and support in the early phases of treatment is thus important and can better fulfil future needs, render increased trust, and provide confidence throughout the course of the disease (Kristjanson & White, 2002). The patient’s cancer disease also changes the situation of their relatives (Stajduhar, 2003), who may be emotionally overwhelmed by unprocessed emotions (Thomas, Morris, & Harman, 2002). If dying patients are to be cared for at home the well-being of their relatives is crucial (Ramirez, Addington-Hall, & Richards, 1998), and their commitment is often seen as a condition for good home care (Mok, Chan, Chan, & Yeung, 2003). Yet, relatives living nearby are not a necessity for providing quality palliative care (Gyllenhammar, et al., 2003). When patients and relatives are in different phases of their processing of overwhelming emotions, it can be difficult for health professionals to understand their emotional reactions (Fox, 1995). There can also be a mismatch of perceptions as to what is important between patients, relatives and professionals (O’Baugh, Wilkes, Luke, & George, 2003; Widmark-Petersson, von Essen, & Sjoden, 2000). In order to offer support at the right care level, health professionals need a better knowledge of the patients’ and relatives’ situation in palliative cancer care (McIllmurray, et al., 2001). In the last decades there has been a shift in the place of dying and more people die in their own homes (Burge, Lawson, & Johnston, 2003; Socialstyrelsen, 2006), which increases the demand for home care (Fürst, 2000). Studies on patients’ and relatives’ situation in palliative care have mostly been conducted in hospice and advanced palliative care settings, but there is a lack of studies from acute care and basic home care settings, and a considerable lack of explanatory theories of how patients and relatives handle their situation in home care. The aim in the present...