Palliative care: elements of good practice

Bridget Johnston
PhD RN BN(Hons) PGCE(FE)
Senior Research Fellow
Cancer Care Research Centre
University of Stirling UK

Palliative care is a growing specialty.(1) In the UK, there is increasing emphasis on its importance for patients with life-threatening illnesses, including involving users in their care and seeking their opinion about that care.(2-5)

The World Health Organization defines palliative care as: “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.(6) Palliative care:

• Provides relief from pain and other distressing symptoms.
• Affirms life and regards dying as a normal process.
• Intends neither to hasten nor to postpone death.
• Integrates the psychological and spiritual aspects of patient care.
• Offers a support system to help patients live as actively as possible until death.
• Offers a support system to help the family cope during the patient’s illness and in their own ­bereavement.
• Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated.
• Will enhance quality of life, and may also positively influence the course of illness.
• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to understand and manage distressing clinical complications better.(6)

Palliative nursing
Seymour et al argue that one of the clearest definitions of palliative nursing is that of Johnston et al: “All life-threatening illnesses – be they cancer, neurological, cardiac or respiratory disease – have implications for physical, social, psychological and spiritual health, for both the individual and their family. The role of palliative nursing is therefore to assess needs in each of these areas and to plan, implement and evaluate appropriate interventions. It aims to improve the quality of life and to enable a dignified death.”(7,8) Care of the dying patient and their family is primarily a nursing responsibility. As patients shift from the sick to the dying role it is principally the nurse who deals with the day-to-day task of supporting and helping them and their families to live with the psychological, social, physical and spiritual consequences of their illness.

Key characteristics of good palliative nursing
In an in-depth qualitative study from a phenomenological perspective, Johnston et al explored the ­experience of being a palliative care nurse from the perspective of palliative nurses and dying ­patients.8,9 In Johnston’s study, both the nurse and the patient study sample alluded to features such as ­having expert interpersonal skills and possessing personal characteristics such as warmth, kindness and ­compassion most often and most strongly. Building rapport and having a good relationship with the patient were also perceived as essential characteristics of an expert palliative care nurse by the study sample. Particularly notable aspects of this relationship were “getting to know me as a person” and “understanding me”, as well as the patient having confidence and trust in the nurse.

The nurses asserted that an expert nurse should provide emotional support to the patient and their family. The patients also stressed the importance of the nurse being there for them by spending time with them. Both nurses and patients perceived that an expert nurse should provide comfort to the ­dying patient by tuning in to their needs. The nurses stressed the importance of an expert palliative nurse being able to control the patient’s distressing pain and symptoms. The nurses indicated that a nurse could not be an expert palliative nurse or maintain their expert status without having knowledge and experience, and the ability to maintain and improve their knowledge through continuous professional development.

Findings give new point of view
In previous research patients have alluded to the pain and symptom control role of the nurse.(10,11) It is, therefore, somewhat surprising that in this study no patient discussed the ability of the nurse to ­control their pain and symptoms and no patient identified controlling pain and symptoms as a feature of an “expert nurse” in palliative care. This may be because they did not see controlling pain and ­symptoms as a role of the nurse, or it may be that they did not think of this as a feature because their pain and symptoms were under control at the time of data collection. On the other hand, patients may have perceived that controlling pain and symptoms was a medical rather than a nursing role.

This novel finding has particular implications for nursing practice, as much of the training and education in palliative nursing is related to alleviating pain and controlling distressing symptoms. Johnston is not suggesting that nurses do not still need to learn about, and understand, pain and symptom control in order to function effectively as a palliative nurse. She does, however, suggest that this training should be tempered with equal emphasis on the psychosocial role of the palliative nurse and, in particular, the role of effective communication and caring characteristics.

Moreover, this study also identified that knowledge, professional development and experience (both personal and professional) are important components of the expert palliative nurse.

The patients perceived that expert palliative nursing care consisted of effective interpersonal and caring skills, and that the nurse should meet their needs by helping them, “being there” for them, providing them with emotional support, being someone to talk to, providing comfort and, most importantly, spending time with them. The importance of these skills in nursing is not new.(12–14) Nurses are sometimes given the chance to explain their actions and give their views, but patients are rarely given this opportunity.(12) Yet, implicit in the studies of nurses’ skills is the notion that patients want to tell nurses their concerns and will do so provided that the nurse encourages and does not block them. Effective communication is a particularly important issue in palliative care. Patients are likely to require a practitioner who can sensitively assess their needs and provide appropriate support when it is required. Hence, although this finding is not unique, it has a particular meaningfulness for palliative nursing care.

Conclusion
The model of an expert palliative nurse, therefore, contains five separate but interwoven dimensions: personal caring characteristics, knowledge, providing comfort; the nurse/patient relationship; and expert communication skills. The majority of these are comfort and caring dimensions, with effective communication as the key. The psychosocial dimensions, therefore, appear to be valued above technical or complex skill elements. This author would, therefore, argue that this has significant implications for nursing practice as well as education and training.

References

1. Doyle D, et al, editors. Oxford ­textbook of palliative medicine. 3rd ed. Oxford: Oxford Medical ­Publications; 2005.
2. NHS Cancer Plan DoH; 2000. Available at: www.dh.gov.uk
3. NHS Quality Improvement Scotland. Specialist palliative care. 2002. Available at: www.nhshealthquality.org/nhsqis/files/palliative.pdf
4. Scottish Executive Cancer in Scotland: Action for change. 2001. Available at:www.scotland.gov.uk
5. National Cancer Research Initiative NCRI supportive and palliative care research in the UK. 2004. Available at:www.ncri.org.ukf
6. WHO. 2003. Available at: www.who.int/cancer/palliative/definition/en
7. Seymour J. What’s in a name? In: Payne S, Seymour J, Ingleton C, editors. Palliative care nursing: principles and evidence for practice. Maidenhead: Open University Press; 2004.
8. Johnston B. Perceptions of palliative nursing. Unpublished PhD thesis. University of Glasgow, UK; 2002.
9. Johnston BM. J Adv Nurs 2006;54(6)700-9.
10. Cox K, et al. J Adv Nurs 1993;18:408-15.
11. Hunt M. J Adv Nurs 1992;17:1297-302.
12. Wilkinson S. J Adv Nurs 1991;16:677-88.
13. Booth K, et al. J Adv Nurs 1996;24:522-7.
14. Heaven CM, et al. J Adv Nurs 1996;23:280-6.