End of Life Care


Assignment Cover Sheet 1
Contents 2
Essay, QCE2. End of Life Care. Symptom Assessment 3 – 9
Reference List 10 – 11

(1) Memorial Symptom Assessment Scale (MSAS) 12 – 13
(2) Cambridge Palliative Assessment Schedule (CAMPAS-R) 14 – 15

Quality Care Enhancement 2
End of Life Care
Symptom Assessment
Identify an Aspect of Care
The aim of this essay is to identify a chosen aspect of nursing relevant to end of life care. The assessment of symptoms is an important activity carried out by the nursing staff in clinical practice, important for the identification of symptoms and their functional impact on the patient. Symptom Assessment is essential for optimising the quality of life, during end of life care. It plays a major role in quality of life assessment. A quality of life assessment addresses physical, psychological and social domains, in addition to specific symptoms. Skills in bedside symptom assessment are especially important for patients with advanced illness who may be too weak to undergo diagnostic studies.
The author of this essay will have conducted a literature search, in order to locate evidence of best practise relating to the aspect of care identified. This evidence will be analysed for the quality and validity of information found during the search.
Hek et al (2000) suggest that any search for literature should be carried out comprehensively and systematically. It is imperative to use a variety of sources in order to gather a range of information, that is reliable and trustworthy, (Hart 2000). To search for specific information, Hek (2000) recommend, electronic searching, which is the quickest and most effective way of doing a literature search.
The Nursing and Midwifery Council (2008), states that the best way to deliver high quality care to patients is to use evidence based practice. The most recent material found will be analysed in this essay as Parahoo (2006) pointed out when stating ???decisions about care practice should be based upon up to date information???.

The Evidence.
An electronic search was conducted as this proves to be the most reliable, efficient and comprehensive form of literature search methods, Keywords used in the search included, Palliative care, Home care, Quality of Life, End of Life, Nursing, symptoms, assessment and research. Search engines such as CINAHL, Google, and Google Scholar were used to find the most up to date literature from sources like PubMed, the Department of Health, the National Institute of Clinical Evidence, the Journal of Advanced Nursing, the Journal of Pain Management and others.
Tools such as the, the Support Team Assessment schedule, (STAS) which is a 17-item patient and staff-completed questionnaire providing an indicator of outcome of palliative care in terms of physical, emotional, social and spiritual needs. Arranged in 2 domains, 10 items assess patient and family and 7 assess the services they receive. Patient/family items include pain and symptom control, patient and family anxiety, communication and insight into disease process and understanding of future. Items for the professional team include communication within team, anxiety, financial and time issues.
The STAS was developed by Professor Higginson when based at University College London. Currently used by specialist palliative support teams, but Rogers et al (1998) state it is not suitable for use, unmodified, with non-specialist primary care professionals. STAS can be used in studies to compare palliative care services or in clinical audit. It has 9 core or up to 20 optional items covering physical, psychosocial, spiritual, communication, planning, family concerns and service aspects.
The Edmonton Symptom Assessment System, (ESAS). A tool designed to assist in the assessment of nine symptoms common in cancer patients: pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. Ewing (1997) point out, that this tool does not address the broad range of symptoms found in the primary care setting. The ESAS is limited in terms of the dimensions of the symptoms as only severity and not impact of the symptom is assessed.
Two prominent studies were identified in the search, Tranmer et al (2003) and Ewing et al (2004) discuss the studies made on the different symptom assessment tools used in the community and in hospital settings, of those patients nearing the end of life. The Memorial Symptom Assessment Scale (MSAS). (Appendix 1) is a patient-rated instrument that was developed by Dr Portenoy to provide multidimensional information about a diverse group of common symptoms. Felder et al (2001) and Heyland et al (2000) agree that recent studies document that most people die in hospitals or long term care facilities, and that patients dying in hospital suffer moderate to severe symptoms. (Claessens et al 2000), (roth et al 2000).
The research undertaken on this study had two purposes, the first to explore and compare the symptom experience of seriously ill hospitalised cancer and non-cancer patients near the end of life using the MSAS and the second to determine if the MSAS was a valid and useful measure of symptom distress in the non-cancer population.
Sixty six patients with metastatic cancer and sixty nine patients with end stage disease were enrolled in the study. There was a noted difference in the prevalence of certain physical symptoms, but not psychological symptoms, between cancer and non-cancer patients (Tranmer et al 2003). Any patients who were not expected to stay in hospital for greater than 72 hours were excluded from the MSAS assessment; this assessment would evaluate the symptom severity, frequency and distress of 32 common symptoms.
Tranmer et al (2003) make the point of saying, the MSAS is a validated measure of symptom distress in cancer patients, that is a comprehensive tool that appears to have potential utility for non-cancer patients. Also that, Systematic measurement of the symptom experience, with validated measures, would enhance the objectivity and comprehensiveness of symptom assessment and evaluation.
Grande (2000) suggests that in the community, the more comprehensive assessment tools such as the MSAS are too long for ill patients to complete on a regular basis or for primary care healthcare professionals to complete during a short face to face meeting.
Todd et al (2003) suggests in order of being able to examine concurrent perspectives of symptoms from palliative care patients, their carers and primary care professionals in patients??™ homes, we need to develop a new tool for symptom assessment specific for primary care.
The Cambridge Palliative Assessment Schedule (CAMPAS-R) (Appendix 2) is used within some areas of the community. CAMPAS-R is a validated tool which was developed in the UK, Ewing et al (2004) stated that, It began as an audit tool for assessing the quality of palliative care service delivery by primary care providers. CAMPAS-R uses a simple set of visual analogue scales for patients to rate their symptoms and problems in terms of intensity, and the impact on their life.
Ewing et al (2006) reported one study looked at how symptom ratings by different health professionals compared with those of patients using CAMPAS-R and showed that there was good agreement on pain and physical symptoms, but that professionals overestimated the severity of emotional symptoms. The tool is simple and easy to use, and has been designed specifically for use by patients at home receiving care from non-specialist palliative care providers.
In the research it was found that CAMPAS-R is a reliable and valid tool for the measurement of symptoms in patients with advanced, progressive disease. The Quantitative study that took place involved one hundred and nine patients being recruited to the study, CAMPAS-R was piloted for face and content validity then administered and compared to criterion measures to a home care sample, predictive validity was demonstrated by significant differences in symptom scores between groups differing in lengths of survival. (Ewing et al 2004) The great strength of CAMPAS-R is its potential use as a patient held record for palliative care in the community. The simple visual analogue scale format, listing common symptoms that are often part of the lives of people on palliative care, is intuitively attractive to the patients.
The CAMPAS-R tool is easy to read and filling it in would only take about five minutes, if the patient is unable to complete the tool unaided then it can be completed by their carer, recording the assessment made by the patients themselves. It must be noted that it has been completed by someone other than the patient (proxy). The Department of Health (2000) require this in the context of the clear commitment in the National Health Service (NHS) Cancer Plan, to improving the experience of care for cancer patients, such a straightforward reporting mechanism could have great benefits in palliative care practice in the United Kingdom.
Ewing et al (2004) stated that CAMPAS-R also has potential for use in both educational and research settings. With the cancer plans focus on principles and practice of palliative care for district nurses, CAMPAS-R which was developed in the community setting, has direct relevance to their education and support in the key area of management of symptoms. Ewing et al (2004) also suggests CAMPAS-R provides a simple, acceptable and psychometrically sound instrument for the monitoring of symptoms of palliative care patients in primary care.
Looking at both the prominent assessment tools that were discussed earlier in this essay, the MSAS and the CAMPAS-R, both tools were subject to quantitative and qualitative studies, it is clear that they both work well in their stated environments, and that during the clinical trials certain tools worked better with certain people and in certain areas for example, as stated during the essay you cannot use the MSAS in the community as it is a very extensive tool to use and would take far too long for the patient to fill in, whereas the CAMPAS-R is much shorter and easier to read. The evidence talks about how each tool works with the patients and the understanding of levels and intensity of symptoms the patient is feeling toward the end of life, how these tools are filled in and who fills them in.
The author of this essay proposes that the CAMPAS-R which has been tried and tested in some areas of the community, to a successful end is introduced more widely to patients facing end of life. As this tool is a short questionnaire, easy to read and filling it in would only take about five minutes, he feels that the nurse could show the patients and their carers how to fill in these tools, this tool could be introduced nationwide, not only in the community but in hospital settings too.
Because the CAMPAS-R is a patient held record in the home environment currently in some community areas, by introducing it into the hospital setting as well as the community nationwide, the patient can still keep this tool at hand or in their notes at the foot of the bed so that when the nurse is present the patient can ask for it, if they are well enough to do so and fill it in with their true, current symptoms, otherwise their proxy, or even the nurse can fill it in for them while at the bedside.
The author believes that the palliative care team should be involved with the patient at the point of diagnosis of their illness, The palliative care team will also know how to fill in the CAMPAS-R, as it is them that will see the patient through this initial stage of their lives into the terminal stage of their illness, then into end of life.

Reference List:
Claessens MT. Lynn J. Zhong Z. (2000). Dying with lung cancer or chronic obstructive pulmonary disease, insights from SUPPORT. Journal of the American Geriatrics Society. Vol: 48 (5) S146-S153
Department of Health (2000). The NHS Cancer Plan, London: The Stationery Office.
Ewing G. (1997). Palliative care audit in primary care phase two; county audit report. Cambridge. Anglia and Oxford NHS Executive.
Ewing G, Todd C, Rogers M, Barclay S, McCabe J, Martin A. . (2004) Validation of a symptom measure suitable for use among palliative care patients in the community: CAMPAS-R. Journal of Pain & Symptom Management 27: 287- 299.
Ewing G, Rogers M, Barclay S, McCabe J, Martin A, Campbell M, (2006) Palliative care in primary care: a study to determine whether patients and professionals agree on symptoms. British Journal of General Practice. 56: 27- 34.
Felder S. (2001). Health care expenditure towards the end of life. Cardiovascular Drugs and Therapy. 15: 345- 347.
Grande GE. Todd CJ (2000). Why are trials in palliative care so difficult Palliative medicine. 14: 69- 74 Sage Journals online.
Hart, C, (2000) Doing a literature Review. London. Sage Publications Ltd.
Hek G., Langton H & Blunden G (2000) systematically searching and reviewing literature Nurse Researcher 7: 40- 57
Heyland D, Tranmer J. Shortt S. Taylor S. (2000). Dying In Canada: Is it an institutionalised, technological supported experience, Canada, Journal of Palliative Care. 16: 10- 15,
Nursing and Midwifery Council (2008), The Code: Standards of conduct, performance and ethics for nurses and midwives: London, NMC
Parahoo K. (2006) Nursing Research: principles, processes and issues (2nd ed).Basingstoke: Palgrave Macmillan.
Portenoy R. Thaler H. Kornblinth A (1994) The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characturistics and distress. European Journal of Cancer, France 9: 1326-1336.
Rogers MS. Barclay SIG. Todd CJ.(1998). Developing the Cambridge Palliative audit schedule. (CAMPAS). A palliative health-care audit for primary health-care teams. British journal of General practice. London, Royal College of General Practitioners 48: 1224-1227
Roth K. Lynne J. Zhong Z. (2000). Dying with end stage liver disease with cirrhosis, Journal of the American Geriatrics Society 48: 122- 130
Tramner JE. Heyland D. Dudgeon D. Groll D. Graham MS. Coulson K (2003) Measuring the symptom experience of seriously ill cancer and non- cancer hospitalised patients near the end of life with Memorial Symptom Assessment Scale. Journal of Pain Symptom Management. 25: 420 – 429

Appendix 1

Appendix 1(cont)

Appendix 2

Appendix 2 (cont)