- Email: [email protected]
Pressure sore risk assessment in palliative care
Journal of Tissue Viability 2000 Vol 10 No 1
27
Pressure sore risk assessment in palliative care Jacqueline Chaplin Senior Lecturer, Marie Curie Care, Marie Curie Centre, Glasgow
Pressure sore prevention in palliative care is recognized as being an essential element of holistic care, with the primary goal of promoting quality of life for patient and family. Little is known about the incidence of pressure sore development and the use of pressure sore risk assessment tools in palliative care settings. The development of a risk assessment tool specifically for palliative care patients in a 41-bedded specialist palliative care unit is described. The risk assessment tool was developed as part of a tissue viability practice development initiative. The approach adopted in the validation of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool was the comparative analysis of professional judgement of experienced palliative care nurses with the numerical scores achieved during the assessment of risk on 291 patients (529 risk assessment events). This comparative analysis identified the threshold for different degrees of risk for the patient group involved: low risk, medium risk, high risk and very high risk. Further work is being undertaken to evaluate the inter-rater reliability of the new tool. A number of issues are explored in this paper in relation to pressure sore prevention in palliative care: the role of risk assessment tools, the sometimes conflicting aims of trying to ensure comfort and prevent pressure sore damage, and the uncertainties faced by palliative care nurses when they are trying to maintain quality of life for the dying.
Introduction Palliative care is the total active care of patients with noncurable illness, where the primary goal is the achievement of the highest quality of life for the individual and his family 1• While prevention of pressure sores is recognized as an important aspect of palliative nursing 2 , there is limited evidence of either the prevalence or incidence of pressure sores in specialist palliative care settings3 or the role of pressure sore risk assessment tools in the prevention of pressure sores for this patient group. This article describes the development of a pressure sore risk assessment tool for palliative care patients which evolved as part of a practice development initiative involving 291 patients in a 41-bedded specialist palliative care unit. It also explores some of the issues which arise in the prevention of pressure sores in individuals who are dying.
Literature review Palliative care services have developed from the need to improve the care for individuals with malignant disease4•5. Increasingly, however, palliative care provision is encompassing individuals with non-malignant non-curable illnesses6 . While recent developments have resulted in an increasing emphasis on day care, home care, out-patient services and Received 5 May 1999; revised 31 August 1999; accepted 9 October 1999
acute hospital support, in-patient care remains a key component of palliative care provision 7 . In-patient specialist palliative care, usually provided within a hospice setting, offers respite care for symptom management as well as care in the terminal phase of the individual's illness when advancing weakness, fatigue and immobility can result in an increased risk of pressure sore development2•8•9 . The annual financial cost of pressure sores to the National Health Service has been estimated at £300-400 million 1o, 11 , with variability in the prevalence and incidence of pressure sores identified in different patient groups; the elderly, the acutely ill, the critically ill 12- 14 • There are limited published data on the prevalence or incidence of pressure sores in a hospice setting. In 1996, Hatcliffe and Dawe reported an average prevalence of 21% in a hospice setting3 . Prevalence surveys in our 41-bedded hospice demonstrate a prevalence of33%. Anecdotal evidence suggests that a range of pressure sore risk assessment tools are used within hospice settings, a reflection of the fact that a bewildering number of pressure sore risk assessment tools have been developed since Norton's pioneering work in the 1960s 15- 19 . None of the published tools have been developed for palliative care patients but rather for different patient populations: acute care 19 , care of the elderly 18 •20 , and those requiring intensive © Tissue Viability Society
28
Journal of Tissue Viability 2000 Vol 10 No 1
care 21 . While many of the risk factors identified in these tools may be relevant to palliative care patients, attempts to implement these tools highlighted a number of problems which led to the development of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool (the Hunters Hill tool). One of the key difficulties were questions over the validity of existing pressure sore risk assessment tools for palliative care patients when they had been developed for other patient populations. Another was difficulty in ensuring inter-rater reliability.
'
Table 1 Risk factors in the Hunters Hill risk assessment tool and rationale for inclusion
Risk factor
Rationale for inclusion
Sensation
Altered sensation is common either due to disease progression as in spinal cord compression or due to analgesic drug therapy Reduced mobility is a feature of advanced malignancy due to fatigue or muscle weakness/atrophy or dyspnoea Urinary incontinence, lymphorrhoea and excessive diaphoresis expose skin to excessive moisture Dyspnoea, reduced muscle mass or oedematous limbs may reduce the patient's ability to change the position of their body when in bed Cachexia and anorexia are often a feature of advanced malignancy, resulting in inadequate nutrition and reduced subcutaneous tissue Age, steroid therapy, dehydration and reduced perfusion often result in fragile skin Loose skin due to weight loss, and poor muscle strength often result in friction and/or shear, eg in those who are nursed upright
Mobility Moisture Activity in bed
Practice development The development of this new tool was the product of a multi-professional group working over a period of 18 months. It should be stressed that the primary aim of the group was not to develop a new tool but to implement an already established tool. However, existing tools evaluated in this care setting were found not to adequately reflect the many factors which contribute to risk in palliative care patients. In particular, the condition of the patient's skin was felt to be a crucial factor influencing the risk of pressure sore development in palliative care patients. A number of key features from other tools were selected and amended after critical review of relevant literature, and as a result the tool is a hybrid of other tools with specific adaptations for the patient group involved. Key aspects of the new tool are • the use of descriptive statements explaining the different numerical sub-scores of identified risk factors - a feature of the Braden & Bergstom risk assessment tool 18 •22 • the fact that a high score relates to a high risk of pressure sore development; a feature of the Waterlow risk assessment tool 11 • consideration of skin condition as an essential aspect which some existing tools do not include 15 •22 The Hunters Hill risk assessment tool has seven identified risk factors. These risk factors were agreed by the multiprofessional group of experienced palliative care professionals. In addition, the tool was piloted within the specialist palliative care centre at different stages of its development allowing all nursing staff the opportunity to comment and suggest amendments. The risk factors are detailed in Table 1 with the rationale for selection. The degree of risk in relation to each factor is assessed for individual patients on a four-point numerical scale, with a minimum score of 7 relating to minimal risk and a maximum score of 28 relating to very high risk.
Validity - the role of clinical judgement The validity of a tool is the quality which reflects its ability to do what it claims to do; in this case attribute a numerical score to palliative care patients' risk of developing pressure
Nutrition! weight change Skin condition Friction/shear
sores. The validity of many pressure sore risk assessment tools has been the subject of considerable debate 23 - 27 . High sensitivity, specificity and ease of use resulting in good predictive value have been identified as key measures of an ideal risk assessment tool 28 . However, Edwards has questioned the process involved in establishing the validity of risk assessment tools and whether the above measures are appropriate in judging the performance of risk calculations29 . She goes on to point out that it is not the tool but its application which is validated. This complex yet crucial issue of validity is compounded by the fact that logical reasoning suggests that to accurately identify a tool's predictive value would require that following the patient assessment of risk no preventive measures be implemented: an unethical and unacceptable course of action for any caring professional. Therefore, the approach adopted to validate the use of the Hunters Hill tool in palliative care patients was comparative analysis of the professional judgement of experienced palliative care nurses with the numerical scores achieved when using the tool. This approach was adopted for a number of reasons. The development and the role of professional judgement in the expert practic~ of nursing and in evidence-based practice is the focus of growing debate 30-32 . This interest and debate is occurring in many areas of specialist or advanced practice where clinical expertise and knowledge play a key role 33 , including palliative nursing 34 . In addition, it is frequently stated that pressure sore risk assessment tools should be used in conjunction with clinical judgement and not in isolation, although often the score may be a major factor in the allocation of resources 25 •35 . Indeed, personal clinical experience suggests that the scores achieved when using pressure sore risk assessment tools are often manipulated when the score is not congruent with the nurse's judgement of risk.
Journal of Tissue Viability 2000 Vol 10 No 1
en ~
0 0
en
0 Q;
..c
E
z
::J
50 45 40 35 30 25 20 15 10 5
an educational programme for nursing staff within the hospice on pressure sore prevention was implemented in an attempt to support the reliability. The tissue viability link nurses in the hospice were crucial in the processes of dissemination of information and feedback. Further work is currently being undertaken in other specialist palliative care centres to determine the inter-rater reliability of the tool by nurses who have not been involved in its development. It is anticipated this will be completed by January 2000. 8 910111213141516171819202122232425262728 Degree of risk: numerical score
+
Low risk
• Medium risk
"' High risk
Figure 1 Relationship between Hunters Hill numerical scores of degree of risk and the judgement of experienced professionals assigning patients to low, medium and high risk groups
The use of professional judgement to validate the application of the Hunters Hill tool in a palliative care population was also employed because it allowed the identification of the numerical scores which equated with different degrees of risk: low risk, medium risk, high and very high risk. The validation process involved experienced palliative care nurses using their professional judgement to assess 291 palliative care patients at risk of pressure sore development and identifying the risk as being either low, medium or high (a total of 529 assessment events). After their professional judgement had been recorded, the nurses then used the Hunters Hill tool to identify a numerical score which related to the patient's degree of risk. Figure 1 illustrates the relationship between professional judgement of pressure sore risk and the numerical score achieved using the tool for a total of 529 pressure sore risk assessment events in 291 palliative care patients. From this evidence, thresholds for different degrees of risk were identified: • • • •
29
11 and under - low risk 12-17-mediumrisk 18-21 -high risk 22 and over - very high risk
There appears to be a very high risk group which was not anticipated. On reflection, this is not surprising, but the relationship between a very high score and length of time before death is an area requiring further exploration.
Discussion It is essential that systematic pressure sore risk assessment is
used to inform decisions regarding the care that patients receive, eg skin care, mobilization, handling and moving, and selection of appropriate mattresses and chair cushions. We are repeatedly cautioned that risk assessment tools should be used as 'aide memoires' and that they do not replace professional judgement. What then is the role of a risk assessment tool which has been developed based on the professional judgement of experienced palliative care nurses? A number of other issues arise in relation not only to pressure sore risk assessment in palliative care patients but also in relation to the wider picture of pressure sore prevention in palliative care. First, the need for a systematic approach to pressure sore prevention is clearly acknowledged. However, what are the implications of being able to assess pressure sore risk within an environment which may have limited resources? Most hospices are either partially or fully dependent on voluntary contributions and therefore their resources may be very limited. What are the responsibilities of nurses and managers in this situation? Figure 2 identifies the percentage of scores (total n = 529) which fell into different risk categories. As can be seen, 45% of the scores were in either the high risk or very high risk category. However, this does not inform us as to how many patients at one time, in one unit, there are in each risk category. This is important information for those managing resources. Another question, as yet unanswered, is whether there is a relationship between very high risk and impending death?
High risk
(25%)
Very high risk
(20%)
Reliability
Any tool which is unreliable cannot be valid36 . A number of measures have been introduced to promote the reliability of the tool. Nurses working within the unit were actively involved in the development of the tool and a cyclical process of piloting, feedback and refinement occurred over a period of 18 months. Also, discussion and agreement of palliative care-specific descriptive examples helped to promote the use of the tool in a reliable manner. In addition,
Low risk
(17%)
Medium risk
(38%)
Figure 2 Percentage of scores falling into the low, medium, high and very high risk categories (n = 529)
30
Journal of Tissue Viability 2000 Vol 10 No 1
A preliminary survey of patient records indicates that there may be a relationship between a patient's condition deteriorating in a way which places them at a very high risk of developing pressure sores and a survival which can be counted in terms of hours or days. This requires further exploration but does present a dilemma for nurses; at what point in the patient's illness does comfort take priority over pressure sore prevention? Comfort must take priority in the last days and hours of life; however, it is often difficult to e~timate the life expectancy of individuals who are receiving palliative care even for those with many years of experience in this field. A third issue is associated with the broader picture of pressure sore prevention and pressure sore management. How do palliative care nurses balance the need for rehabilitation of the patient to ensure the optimum quality of life with the selection of appropriate support surfaces? The use of specialized beds may be desirable on the one hand for someone who is at very high risk or who has an existing sore, but immobilization of a patient in this way may cause other difficulties, for example by increasing the risk of respiratory infections and by increasing the social isolation of the patient. Alternatively, encouraging a patient with a sacral sore to be out of bed may increase their social contact but may reduce the chances of the pressure sore healing, with associated discomfort and risk of infection. These issues often result in palliative care nurses being faced with difficult decisions which may be compounded by conflicting demands of family members in an often emotionally charged situation. Pressure sore development may be viewed by relatives as an indication of poor quality care. Or, alternatively, if the patient has been nursed at home by the family, pressure sore development may be accompanied by feelings of guilt. A guiding principle in the resolution of all these issues must be the comfort of the patient and the need to ensure that quality of life for the patient and family is maintained at all times. In acute care, pressure sores are often viewed as being preventable, but is this the case for palliative care patients? If we accept that pressure sores are not always preventable in those who are dying and that comfort may be more important, how do we recognize when the need for comfort outweighs the desirability of pressure sore prevention? Accurate assessment of pressure sore risk must be carried out as part of the holistic assessment of the patient. Furthermore, care decisions taken must be discussed by the team providing care and documented with a clear rationale recorded for the decisions reached. For example, if the patient's risk status indicates the need for a specialized bed but this is not used because the patient is too ill to move or alternatively does not wish to be nursed on such a bed because of bone pain or nausea, then this information needs to be documented.
Conclusion The development of a pressure sore risk assessment tool for palliative care patients has been described. The tool was developed in a specialist palliative care centre as part of a practice development initiative. It directly involved a multiprofessional group for the development of the tool, and this group, together with all the nursing staff in the hospice, were also involved in measures to ensure the reliability of the tool. The novel approach used to validate the application of the tool was the comparative analysis of the scores achieved with professional judgement of the experienced palliative care nurses. For palliative care nurses, pressure sore risk assessment raises a number of issues, many of which are related to the question of whether there comes a time in a person's illness where comfort takes priority over pressure sore prevention. At a simple level, the answer to this question is yes: at times comfort does take priority. However, while this is consistent with the aim of palliative care, the implications are complex. It is difficult to identify the point when priorities change, because of the complexities of the concept of quality of life and because it may take some time for professionals, patients and relatives to acknowledge that the final stages of the illness have been reached. In addition, the patient's priorities may not be the same as those of relatives and this can cause difficulties both before and after the death of the patient, when relatives may be very distressed if they feel that poor care was received by their loved one prior to death. The need for debate is clear. In addition, further audit and research on pressure sore prevention within the palliative care setting is necessary. Little is known about the prevalence and/or incidence of pressure sores within specialist palliative care units, or about which pressure sore risk assessment tools are in use. Furthermore, less is known about how effectively risk assessment is carried out and whether this takes place as part of an overall pressure sore prevention strategy. In addition, few support surfaces have been evaluated in terms of patient comfort, especially the comfort of someone who may be weak, emaciated, and perhaps in pain. Another aspect is the difficulty in identifying when comfort should take priority over pressure sore prevention. For example, is there a link between the identified very high risk category and imminent death, and if so might this information be useful in identifying one of the points when Gomfort should take priority? It should be noted, however, that two problems frequently
face those involved in palliative care research and practice development. One is the relatively small numbers of patients, most hospices having less than 30 beds. The second is the high natural attrition rate of the subjects involved. As a result, projects often need to be lengthy and/or multi-site in design, with all the difficulties which ensue from collaborative multi-centre research. However, in these days of evidence-based practice, it is essential that palliative care nurses are involved in developing the evidence base of
Journal of Tissue Viability 2000 VollO No 1 31
palliative nursing through practitioner-based research which is founded on nurses' expertise and professional judgement as well as the principles of scientific enquiry. It is hoped that this paper contributes to the debate about evidence-based palliative nursing practice in the context of pressure sore prevention.
Address for correspondence
J Chaplin, Marie Curie Centre, Hunters Hill, Belmont Road, Springburn, Glasgow G21 3AY.
References
1 Cancer pain relief and palliative care. Geneva: World Health Organisation, 1990. 2 DeConno F, Ventafridda V, Saita L. Skin problems in advanced and terminal cancer patients. Journal of Pain and Symptom Management 1991; 6: 247-256. 3 Ratcliffe S, Dawe R. Monitoring pressure sores in a palliative care setting. International Journal of Palliative Nursing 1996; 2: 182-185. 4 Hockley J. The evolution of the hospice approach. In: Clark D, Hockley J, Ahmedzai S, editors. New themes in palliative care. Buckingham: Open University Press, 1997. 5 Saunders C. The management of terminal illness. London: Edward Arnold, 1984. 6 George B, Sykes J. Beyond cancer? In: Clark D, Hockley J, Ahmedzai S, editors. New themes in palliative care. Buckingham: Open University Press, 1997: 239-254. 7 Clark D, Seymour J. Reflections on palliative care. Buckingham: Oxford University Press, 1998. 8 Bale S, Regnard C. Pressure sores. In: Regnard C, Hockley J, editors. Flow diagrams in advanced cancer and other diseases. London: Edward Arnold, 1995:54-56. 9 Walding A, Andrews C. Preventing and managing pressure sores in palliative care. Professional Nurse 1995; 11: 33-38. 10 The cost of pressure sores. London: Department of Health, 1993. 11 Waterlow J. The Waterlow card for the prevention and management of pressure sores: towards a pocket policy. Care, Science and Practice 1988; 6: 8-12. 12 Martin B, Devine B, MacDonald J, Williams J, Kiggins P, Norrie J, et al. Incidence of pressure sores in geriatric long-term hospital care. Journal of Tissue Viability 1995; 5: 83-87. 13 O'Dea K. Prevalence of pressure damage in hospital patients in the United Kingdom. Journal of Wound Care 1993; 2: 221-225. 14 Clough N. The cost of pressure area management in an intensive care unit. Journal of Wound Care 1994; 3: 33-35. 15 Pritchard V. Calculating the risk (the Douglas pressure sore risk calculator). Nursing Times 1986; February 19: 59-61. 16 Gosnell D. An assessment tool to identify pressure sores. Nursing Research 1973; 22: 55-59. 17 Bergstrom N, Braden B, Laguzza A, Holman V. The Braden scale for predicting pressure sore risk. Nursing Research. 1987; 36: 205-210. 18 Waterlow J. A risk assessment card. Nursing Times 1985; 27(81): 48-55. 19 Norton D, McLaren R, Exton-Smith A. An investigation of geriatric nursing problems in hospital. Edinburgh: Churchill Livingstone, 1962. 20 Potter MS. Incidence of pressure sores in nursing home patients. Journal of Wound Care 1994; 3: 37-42. 21 Birtwistle J. Pressure sore formation and risk assessment in intensive care. Care of the Critically llll994; 10: 154-159. 22 Bergstrom N, Braden B, Kemp M, Champagne M, Ruby E. Predicting pressure ulcer risk. Nursing Research 1998; 47: 261-269.
23 Bridel J. Assessing the risk of pressure sore damage. Nursing Standard 1993; 7: 32-35. 24 Edwards M. The rationale for the use of risk calculators in pressure sore prevention, and the evidence of the reliability and validity of published scales. Journal of Advanced Nursing 1994; 20: 288-296. 25 Flanagan M. Who is at risk of a pressure sore? Professional Nurse 1995; 10: 305-308. 26 Edwards M. The levels of reliability and validity of the Waterlow pressure sore risk calculator. Journal of Wound Care 1995; 4: 373-378. 27 Waterlow J, Vernon M, Gilchrist B. The Norton score and pressure sore prevention. Journal of Wound Care 1996; 5: 93-99. 28 National Pressure Ulcer Advisory Panel. Pressure ulcers: incidence, economics and risk assessment. Care, Science and Practice 1989; 7(4): 96-99. 29 Edwards M. Pressure sore risk calculators: some methodological issues. Journal of Clinical Nursing 1996; 5: 307-312. 30 Rolfe G. Expanding nursing knowledge. Oxford: Reed Educational and Professional Publishing Ltd, 1998. 31 Benner P. From novice to expert. Excellence and power in clinical nursing practice. Menlo Park, California: Addison-Wesley, 1984. 32 Meerabeau L. The nature of practitioner knowledge. Practitioner research in health care. London: Chapman & Hall, 1995. 33 Rolfe G. Advanced practice and the reflective nurse: developing knowledge out of practice. In: Rolfe G, Fulbrook P, editors. Advanced nursing practice. Oxford: Reed Educational and Professional Publishing Ltd, 1998: 219-228. 34 Kennedy C. Ways of knowing in palliative nursing. International Journal of Palliative Nursing 1998; 4: 240-245. 35 Davies K. Pressure sores: aetiology, risk factors and assessment scales. British Journal of Nursing 1994; 3: 256-262. 36 Polit D, Hungler D. Nursing research: principles and methods, 4th ed. Philadelphia: Lippincott, 1991.
27
Pressure sore risk assessment in palliative care Jacqueline Chaplin Senior Lecturer, Marie Curie Care, Marie Curie Centre, Glasgow
Pressure sore prevention in palliative care is recognized as being an essential element of holistic care, with the primary goal of promoting quality of life for patient and family. Little is known about the incidence of pressure sore development and the use of pressure sore risk assessment tools in palliative care settings. The development of a risk assessment tool specifically for palliative care patients in a 41-bedded specialist palliative care unit is described. The risk assessment tool was developed as part of a tissue viability practice development initiative. The approach adopted in the validation of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool was the comparative analysis of professional judgement of experienced palliative care nurses with the numerical scores achieved during the assessment of risk on 291 patients (529 risk assessment events). This comparative analysis identified the threshold for different degrees of risk for the patient group involved: low risk, medium risk, high risk and very high risk. Further work is being undertaken to evaluate the inter-rater reliability of the new tool. A number of issues are explored in this paper in relation to pressure sore prevention in palliative care: the role of risk assessment tools, the sometimes conflicting aims of trying to ensure comfort and prevent pressure sore damage, and the uncertainties faced by palliative care nurses when they are trying to maintain quality of life for the dying.
Introduction Palliative care is the total active care of patients with noncurable illness, where the primary goal is the achievement of the highest quality of life for the individual and his family 1• While prevention of pressure sores is recognized as an important aspect of palliative nursing 2 , there is limited evidence of either the prevalence or incidence of pressure sores in specialist palliative care settings3 or the role of pressure sore risk assessment tools in the prevention of pressure sores for this patient group. This article describes the development of a pressure sore risk assessment tool for palliative care patients which evolved as part of a practice development initiative involving 291 patients in a 41-bedded specialist palliative care unit. It also explores some of the issues which arise in the prevention of pressure sores in individuals who are dying.
Literature review Palliative care services have developed from the need to improve the care for individuals with malignant disease4•5. Increasingly, however, palliative care provision is encompassing individuals with non-malignant non-curable illnesses6 . While recent developments have resulted in an increasing emphasis on day care, home care, out-patient services and Received 5 May 1999; revised 31 August 1999; accepted 9 October 1999
acute hospital support, in-patient care remains a key component of palliative care provision 7 . In-patient specialist palliative care, usually provided within a hospice setting, offers respite care for symptom management as well as care in the terminal phase of the individual's illness when advancing weakness, fatigue and immobility can result in an increased risk of pressure sore development2•8•9 . The annual financial cost of pressure sores to the National Health Service has been estimated at £300-400 million 1o, 11 , with variability in the prevalence and incidence of pressure sores identified in different patient groups; the elderly, the acutely ill, the critically ill 12- 14 • There are limited published data on the prevalence or incidence of pressure sores in a hospice setting. In 1996, Hatcliffe and Dawe reported an average prevalence of 21% in a hospice setting3 . Prevalence surveys in our 41-bedded hospice demonstrate a prevalence of33%. Anecdotal evidence suggests that a range of pressure sore risk assessment tools are used within hospice settings, a reflection of the fact that a bewildering number of pressure sore risk assessment tools have been developed since Norton's pioneering work in the 1960s 15- 19 . None of the published tools have been developed for palliative care patients but rather for different patient populations: acute care 19 , care of the elderly 18 •20 , and those requiring intensive © Tissue Viability Society
28
Journal of Tissue Viability 2000 Vol 10 No 1
care 21 . While many of the risk factors identified in these tools may be relevant to palliative care patients, attempts to implement these tools highlighted a number of problems which led to the development of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool (the Hunters Hill tool). One of the key difficulties were questions over the validity of existing pressure sore risk assessment tools for palliative care patients when they had been developed for other patient populations. Another was difficulty in ensuring inter-rater reliability.
'
Table 1 Risk factors in the Hunters Hill risk assessment tool and rationale for inclusion
Risk factor
Rationale for inclusion
Sensation
Altered sensation is common either due to disease progression as in spinal cord compression or due to analgesic drug therapy Reduced mobility is a feature of advanced malignancy due to fatigue or muscle weakness/atrophy or dyspnoea Urinary incontinence, lymphorrhoea and excessive diaphoresis expose skin to excessive moisture Dyspnoea, reduced muscle mass or oedematous limbs may reduce the patient's ability to change the position of their body when in bed Cachexia and anorexia are often a feature of advanced malignancy, resulting in inadequate nutrition and reduced subcutaneous tissue Age, steroid therapy, dehydration and reduced perfusion often result in fragile skin Loose skin due to weight loss, and poor muscle strength often result in friction and/or shear, eg in those who are nursed upright
Mobility Moisture Activity in bed
Practice development The development of this new tool was the product of a multi-professional group working over a period of 18 months. It should be stressed that the primary aim of the group was not to develop a new tool but to implement an already established tool. However, existing tools evaluated in this care setting were found not to adequately reflect the many factors which contribute to risk in palliative care patients. In particular, the condition of the patient's skin was felt to be a crucial factor influencing the risk of pressure sore development in palliative care patients. A number of key features from other tools were selected and amended after critical review of relevant literature, and as a result the tool is a hybrid of other tools with specific adaptations for the patient group involved. Key aspects of the new tool are • the use of descriptive statements explaining the different numerical sub-scores of identified risk factors - a feature of the Braden & Bergstom risk assessment tool 18 •22 • the fact that a high score relates to a high risk of pressure sore development; a feature of the Waterlow risk assessment tool 11 • consideration of skin condition as an essential aspect which some existing tools do not include 15 •22 The Hunters Hill risk assessment tool has seven identified risk factors. These risk factors were agreed by the multiprofessional group of experienced palliative care professionals. In addition, the tool was piloted within the specialist palliative care centre at different stages of its development allowing all nursing staff the opportunity to comment and suggest amendments. The risk factors are detailed in Table 1 with the rationale for selection. The degree of risk in relation to each factor is assessed for individual patients on a four-point numerical scale, with a minimum score of 7 relating to minimal risk and a maximum score of 28 relating to very high risk.
Validity - the role of clinical judgement The validity of a tool is the quality which reflects its ability to do what it claims to do; in this case attribute a numerical score to palliative care patients' risk of developing pressure
Nutrition! weight change Skin condition Friction/shear
sores. The validity of many pressure sore risk assessment tools has been the subject of considerable debate 23 - 27 . High sensitivity, specificity and ease of use resulting in good predictive value have been identified as key measures of an ideal risk assessment tool 28 . However, Edwards has questioned the process involved in establishing the validity of risk assessment tools and whether the above measures are appropriate in judging the performance of risk calculations29 . She goes on to point out that it is not the tool but its application which is validated. This complex yet crucial issue of validity is compounded by the fact that logical reasoning suggests that to accurately identify a tool's predictive value would require that following the patient assessment of risk no preventive measures be implemented: an unethical and unacceptable course of action for any caring professional. Therefore, the approach adopted to validate the use of the Hunters Hill tool in palliative care patients was comparative analysis of the professional judgement of experienced palliative care nurses with the numerical scores achieved when using the tool. This approach was adopted for a number of reasons. The development and the role of professional judgement in the expert practic~ of nursing and in evidence-based practice is the focus of growing debate 30-32 . This interest and debate is occurring in many areas of specialist or advanced practice where clinical expertise and knowledge play a key role 33 , including palliative nursing 34 . In addition, it is frequently stated that pressure sore risk assessment tools should be used in conjunction with clinical judgement and not in isolation, although often the score may be a major factor in the allocation of resources 25 •35 . Indeed, personal clinical experience suggests that the scores achieved when using pressure sore risk assessment tools are often manipulated when the score is not congruent with the nurse's judgement of risk.
Journal of Tissue Viability 2000 Vol 10 No 1
en ~
0 0
en
0 Q;
..c
E
z
::J
50 45 40 35 30 25 20 15 10 5
an educational programme for nursing staff within the hospice on pressure sore prevention was implemented in an attempt to support the reliability. The tissue viability link nurses in the hospice were crucial in the processes of dissemination of information and feedback. Further work is currently being undertaken in other specialist palliative care centres to determine the inter-rater reliability of the tool by nurses who have not been involved in its development. It is anticipated this will be completed by January 2000. 8 910111213141516171819202122232425262728 Degree of risk: numerical score
+
Low risk
• Medium risk
"' High risk
Figure 1 Relationship between Hunters Hill numerical scores of degree of risk and the judgement of experienced professionals assigning patients to low, medium and high risk groups
The use of professional judgement to validate the application of the Hunters Hill tool in a palliative care population was also employed because it allowed the identification of the numerical scores which equated with different degrees of risk: low risk, medium risk, high and very high risk. The validation process involved experienced palliative care nurses using their professional judgement to assess 291 palliative care patients at risk of pressure sore development and identifying the risk as being either low, medium or high (a total of 529 assessment events). After their professional judgement had been recorded, the nurses then used the Hunters Hill tool to identify a numerical score which related to the patient's degree of risk. Figure 1 illustrates the relationship between professional judgement of pressure sore risk and the numerical score achieved using the tool for a total of 529 pressure sore risk assessment events in 291 palliative care patients. From this evidence, thresholds for different degrees of risk were identified: • • • •
29
11 and under - low risk 12-17-mediumrisk 18-21 -high risk 22 and over - very high risk
There appears to be a very high risk group which was not anticipated. On reflection, this is not surprising, but the relationship between a very high score and length of time before death is an area requiring further exploration.
Discussion It is essential that systematic pressure sore risk assessment is
used to inform decisions regarding the care that patients receive, eg skin care, mobilization, handling and moving, and selection of appropriate mattresses and chair cushions. We are repeatedly cautioned that risk assessment tools should be used as 'aide memoires' and that they do not replace professional judgement. What then is the role of a risk assessment tool which has been developed based on the professional judgement of experienced palliative care nurses? A number of other issues arise in relation not only to pressure sore risk assessment in palliative care patients but also in relation to the wider picture of pressure sore prevention in palliative care. First, the need for a systematic approach to pressure sore prevention is clearly acknowledged. However, what are the implications of being able to assess pressure sore risk within an environment which may have limited resources? Most hospices are either partially or fully dependent on voluntary contributions and therefore their resources may be very limited. What are the responsibilities of nurses and managers in this situation? Figure 2 identifies the percentage of scores (total n = 529) which fell into different risk categories. As can be seen, 45% of the scores were in either the high risk or very high risk category. However, this does not inform us as to how many patients at one time, in one unit, there are in each risk category. This is important information for those managing resources. Another question, as yet unanswered, is whether there is a relationship between very high risk and impending death?
High risk
(25%)
Very high risk
(20%)
Reliability
Any tool which is unreliable cannot be valid36 . A number of measures have been introduced to promote the reliability of the tool. Nurses working within the unit were actively involved in the development of the tool and a cyclical process of piloting, feedback and refinement occurred over a period of 18 months. Also, discussion and agreement of palliative care-specific descriptive examples helped to promote the use of the tool in a reliable manner. In addition,
Low risk
(17%)
Medium risk
(38%)
Figure 2 Percentage of scores falling into the low, medium, high and very high risk categories (n = 529)
30
Journal of Tissue Viability 2000 Vol 10 No 1
A preliminary survey of patient records indicates that there may be a relationship between a patient's condition deteriorating in a way which places them at a very high risk of developing pressure sores and a survival which can be counted in terms of hours or days. This requires further exploration but does present a dilemma for nurses; at what point in the patient's illness does comfort take priority over pressure sore prevention? Comfort must take priority in the last days and hours of life; however, it is often difficult to e~timate the life expectancy of individuals who are receiving palliative care even for those with many years of experience in this field. A third issue is associated with the broader picture of pressure sore prevention and pressure sore management. How do palliative care nurses balance the need for rehabilitation of the patient to ensure the optimum quality of life with the selection of appropriate support surfaces? The use of specialized beds may be desirable on the one hand for someone who is at very high risk or who has an existing sore, but immobilization of a patient in this way may cause other difficulties, for example by increasing the risk of respiratory infections and by increasing the social isolation of the patient. Alternatively, encouraging a patient with a sacral sore to be out of bed may increase their social contact but may reduce the chances of the pressure sore healing, with associated discomfort and risk of infection. These issues often result in palliative care nurses being faced with difficult decisions which may be compounded by conflicting demands of family members in an often emotionally charged situation. Pressure sore development may be viewed by relatives as an indication of poor quality care. Or, alternatively, if the patient has been nursed at home by the family, pressure sore development may be accompanied by feelings of guilt. A guiding principle in the resolution of all these issues must be the comfort of the patient and the need to ensure that quality of life for the patient and family is maintained at all times. In acute care, pressure sores are often viewed as being preventable, but is this the case for palliative care patients? If we accept that pressure sores are not always preventable in those who are dying and that comfort may be more important, how do we recognize when the need for comfort outweighs the desirability of pressure sore prevention? Accurate assessment of pressure sore risk must be carried out as part of the holistic assessment of the patient. Furthermore, care decisions taken must be discussed by the team providing care and documented with a clear rationale recorded for the decisions reached. For example, if the patient's risk status indicates the need for a specialized bed but this is not used because the patient is too ill to move or alternatively does not wish to be nursed on such a bed because of bone pain or nausea, then this information needs to be documented.
Conclusion The development of a pressure sore risk assessment tool for palliative care patients has been described. The tool was developed in a specialist palliative care centre as part of a practice development initiative. It directly involved a multiprofessional group for the development of the tool, and this group, together with all the nursing staff in the hospice, were also involved in measures to ensure the reliability of the tool. The novel approach used to validate the application of the tool was the comparative analysis of the scores achieved with professional judgement of the experienced palliative care nurses. For palliative care nurses, pressure sore risk assessment raises a number of issues, many of which are related to the question of whether there comes a time in a person's illness where comfort takes priority over pressure sore prevention. At a simple level, the answer to this question is yes: at times comfort does take priority. However, while this is consistent with the aim of palliative care, the implications are complex. It is difficult to identify the point when priorities change, because of the complexities of the concept of quality of life and because it may take some time for professionals, patients and relatives to acknowledge that the final stages of the illness have been reached. In addition, the patient's priorities may not be the same as those of relatives and this can cause difficulties both before and after the death of the patient, when relatives may be very distressed if they feel that poor care was received by their loved one prior to death. The need for debate is clear. In addition, further audit and research on pressure sore prevention within the palliative care setting is necessary. Little is known about the prevalence and/or incidence of pressure sores within specialist palliative care units, or about which pressure sore risk assessment tools are in use. Furthermore, less is known about how effectively risk assessment is carried out and whether this takes place as part of an overall pressure sore prevention strategy. In addition, few support surfaces have been evaluated in terms of patient comfort, especially the comfort of someone who may be weak, emaciated, and perhaps in pain. Another aspect is the difficulty in identifying when comfort should take priority over pressure sore prevention. For example, is there a link between the identified very high risk category and imminent death, and if so might this information be useful in identifying one of the points when Gomfort should take priority? It should be noted, however, that two problems frequently
face those involved in palliative care research and practice development. One is the relatively small numbers of patients, most hospices having less than 30 beds. The second is the high natural attrition rate of the subjects involved. As a result, projects often need to be lengthy and/or multi-site in design, with all the difficulties which ensue from collaborative multi-centre research. However, in these days of evidence-based practice, it is essential that palliative care nurses are involved in developing the evidence base of
Journal of Tissue Viability 2000 VollO No 1 31
palliative nursing through practitioner-based research which is founded on nurses' expertise and professional judgement as well as the principles of scientific enquiry. It is hoped that this paper contributes to the debate about evidence-based palliative nursing practice in the context of pressure sore prevention.
Address for correspondence
J Chaplin, Marie Curie Centre, Hunters Hill, Belmont Road, Springburn, Glasgow G21 3AY.
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