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Issue 2, December 2012,
Volume 11 |
Comments Off on Deciphering Unwritten Rules
Anna Sandgren, Jönköping University Abstract The aim of this study was to develop a classic grounded theory of patients, relatives and nurses in palliative cancer care. Data from three earlier studies conducted in palliative care were analyzed. “Deciphering unwritten rules” emerged as the pattern of behavior through which patients, relatives and nurses are dealing with the uncertainty of how to act and behave in palliative cancer care. Deciphering means finding out what the rules mean and trying to interpret them and this can be done consciously or unnoticed. Deciphering unwritten rules involves the strategies figuring out, deliberating, maneuvering and evaluating. This theory demonstrates the complexities of palliative care and the importance of knowledge, counseling and resources for all involved. Introduction Palliative care is a caring philosophy with the goal to achieve the best possible quality of life for both patients and relatives when facing problems related to life-threatening illness (World Health Organization, 2003). The adjustment and transition to palliative care takes time for patients and relatives, and involves shifting the care goals from curing to caring (Duggleby & Berry, 2005). In the 1960’s it was common for patients not to be informed of their impending death; so the awareness of dying among patients and relatives was mostly a closed awareness (Glaser & Strauss, 1965). The pendulum has shifted during the last decades towards open awareness, where those involved talk more about death than they have in the past (Andrews & Nathaniel, 2009). Powerlessness and helplessness is common in dying patients (Sand, Strang, & Milberg, 2008) who often oscillate between different feelings such as hopelessness and hope (Melin-Johansson, Odling, Axelsson, & Danielson, 2008). So even if patients have a lower quality of life in many dimensions during their last months of life, they can still experience happiness and satisfaction (Sahlberg-Blom, Ternestedt, & Johansson, 2001). For the relatives, the situation is new and they need to make adjustments, although they want to keep on living as normally as possible (Appelin, Broback, & Bertero, 2005; Sandgren, Thulesius, Petersson, & Fridlund, 2010), yet having a twofold role; as caregivers and as relatives suffering anxiety and physical exhaustion (Broback & Bertero, 2003). Both patients and relatives can be hypersensitive to what happens during the dying trajectory and this hypersensitivity is energy draining (Sandgren et al., 2010). It has been shown that adequate information and support from the health professionals early in the disease trajectory decrease relatives’ needs throughout the dying trajectory and increases their trust and confidence towards the health professionals (Kristjanson & White, 2002; Wenrich et al., 2003). Caring for cancer patients can be both challenging and rewarding for nurses (Corner, 2002; Penson, Dignan, Canellos, Picard, & Lynch, 2000) who often want to go beyond the diagnostic concept of cancer and care for the whole person (Bertero, 1999). A balance between being close to the patients and distancing themselves is needed to avoid the risk of being emotionally overloaded (Sandgren, Thulesius, Fridlund, & Petersson, 2006). Palliative care can also be seen as a balancing act, where health professionals need to balance the needs for care with the resources to give care (Thulesius, Hakansson, & Petersson, 2003). There can be a tension or a gap between nurses’ caregiving ideals and the reality of daily work. Nurses can be aware of their ideal of how to give good palliative care, but the possibilities to realize these are often small (Tishelman et al., 2004). To give high quality palliative care, health professionals need to know what...