Permission for use of Leslie’s (ficticious name) case notes was granted verbally from the director of Nursing following a letter of application for same (appendix 1).
Due to restrictions on word count ,a full and more comprehensive case history of Leslie’s journey during the last three months of his life will be included as an appendix (appendix 2).
Definition of pain:’ An unpleasant sensory and emotional experience associated with actual potential tissue damage or described in terms of such damage’.(2) Suffering may be caused by not only physical pain but also the phychological ,social or spiritual distress associated with illness.(6)
The case study that I have chosen for this assignment is a 60year old man who was admitted to our unit for palliative care. Leslie suffered not only physical pain but his psychological and social pain were also of great concern. Through the reflection of the assessment , evaluation and treatment of his holistic pain it is hoped to demonstrate the importance of these concepts and how they are intertwined. For the purpose of the assignment to enhance clarity each aspect of his total pain will be discussed separately with reference to the tremendous overlap which exists between physical psychological social and spiritual pain (5)
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Leslie, a 60 year old man widowed but living with his partner Bridget for the past 13 years was admitted to the ward from home following a sudden deterioration, he was in a semi comatosed state and unresponsive..He was first diagnosed in 2004 with colonic carcinoma which was surgically removed. He had reoccurrence with liver metastases 18 months later, which was also treated surgically and made a good recovery. In 2007 he was diagnosed with metastases of the lung, bone and brain and was treated with radium, dexamethasone and zometia .He had commenced Palliative third line treatment of oral Capecitabine one month before admission.
He was accompanied by his partner Bridget who was his main carer .Leslie had one daughter to whom he was also very close. Leslies admission assessment was taken from the GP’s referral letter ,homecare team correspondence and information from his partner who was obviously distressed due to his sudden deterioration. Leslies daughter Claire visited later and requested that she be also listed as next of kin.
Leslie was commenced on a Graseby syringe driver by the homecare team prior to his admission of morphine sulphate 10mgs and buscopan 40mgs. He had been suffering abdominal pain which Bridget stated was described by Leslie as a pressure type pain right across his lower abdomen which caused him discomfort but was well controlled on morphine 10mgs bd. This noceciptive visceral type chronic pain of moderate severity was attributed to his disease progression and generally responds well to opioids and anti-inflammatory drugs.(10) Leslie’s dexamethasone was increased from 4mgs to 6mgs daily as its effectiveness as a multipurpose adjuvant analgesic in advanced cancer is well recognised by its modification of the disease process resulting in reduced pain(6,7) The World Health Organisational ladder was instrumential in standardizing and giving clear and simple guidance in the administration of analgesia,at regular intervals and in a stepwise fashion(25)
. Over the next two weeks Leslie’s condition improved , he regained consciousness and began to take oral fluids. His pain was assessed as it is essential to relieve pain and suffering that accurate and continuous pain assessment is adhered to(8) The Bieri Faces Pain Scale (FPS) tool (appendix 3) which is useful for verbal and non- verbal assessment was used as per hospital guidelines. This pain scale was developed to measure pain intensity in children and its usefulness in the palliative care patient is questionable.(8)It is a unidimensional tool that only assesses pain intensity using a visual analogue scale(VAS) of seven faces and a numerical rating scale (NRS)of 0 -10.(ref)and so is very restrictive and lacking in information. An expert working group of the European Asociation for palliative care (EAPC)reviewed the status of pain measurement tools(PMT) in palliative care research and recommended the Bieri Faces scale for children.(9). However in adult patients such as Leslie with no cognitive impairment ,the Brief Pain Inventory(BPI) ‘Short Form PMT was advised (9)(appendix 4), The BPI is multidimensional and addresses pain etiology, history, intensity, quality, location and effects on activities.(8)It uses the NRS to assess the effects of pain on a range of daily activities and this is recommended over the VAS or the VRS due to evidence of better compliance.(9)The location, cause and duration of the pain relief is also included. (8) The Edmond Symptom assessment tool (ESST)is also recommended for use in palliative care settings and has been identified as being a simple and effective tool for regular assessment in symptom distress (19) It assesses symptoms such as energy , nausea, depression , anxiety, drowsiness, appetite, constipation ,dysponea and overall feeling of well being which results in an overall symptom distress score. However despite a large number of pain assessment tools available( ref)there are none that deal specifically with all the dimensions necessary for palliative care patients and an international standard is needed for palliative care pain assessment.(11)
On regaining consciousness Leslie had no complaints of pain when assessed at rest but complained of pain on movement.This was identified as breakthrough pain as it This he scored as 5-7 on the faces pain scale and he described it as a sharp type pain radiating to his right shoulder lasting 10 to 15 mins when mobilising from the bed to the chair. On assessment it was felt that this radiating pain was due to his infrahepatic disease causing diaphragmatic irritation due to compression of visceral structures. This incidental volitional type breakthrough pain made Leslies mobility difficult and was causing him anxiety due to its severity and causing increasing loss of independence. Oramorph 10mgs was administered initially when Leslie complained of pain after mobility and was effective but onset of action did not occur for 20-30mins with full analgesic effect only after 60 mins (24).Because Leslies pain was predictable and therefore best managed prophylactically(23) ,he was commenced on pecfent 100mcg prior to transferring from the bed to the chair as pecfent provides pain relief within 5mins from administration with clinical meaningful pain relief from 10mins lasting up to 60mins.(22) The dosage was increased to 200mcg(2 nasal sprays) as a repeat dose cannot be given for 4 hours(22) and this increase allowed Leslie to mobilise with the use of a zimmer frame and with the assistance of the physio .His pain was well controlled with scores of 0-2 on the visual analogue faces pain scale .Assessment of the temporal pattern of Leslies breakthrough pain was not possible on the Bieri Faces Pain scale and the inclusion of this aspect of pain on current pain assessment tools is extremely limited.(31) However the Alberta Breakthrough Pain Assessment Tool for Cancer patients has been developed in Canada for research purposes and it is hoped that this tool will become more widely used internationally. (31)
While recognising the patients right to privacy it is necessary as stated by Pederson in order to address issues of concern that every effort is made to help the patient overcome the fear, embarrassment or simple inability to recongnise what needs to be said.(1) With gentle guideing on questions and the use of therapeutic communication, Leslie spoke about his feelings of anxiety due to loss of physical independence and financial security ,but it was evident that the poor relationship between his daughter and partner was causing him grave anxiety , his feelings of loneliness at’ leaving them’ and’ how long more did he have? ‘.concerned about the relationship between his partner and daughter which had become apparent to staff from the lack of communication between them.
His wife had died from cancer when his daughter Jennifer was only 10 years old and she was now 22yrs and had a very close bond with her father .She never accepted his partner Biddy and they had not spoken for years. This disharmony was the reason Leslie never married Biddy . On gently prompting Leslie about his legal affairs ,he revealed that he had not made a will , On posing the question to Leslie towards his knowledge of his condition, while he recongnised that ‘ things didn’t look good ‘ he expressed a strong wish for an appointment to see his oncologist .He had grave concerns about loosing his autonmy and independence
Leslies social pain was causing him alot of psychological distress . Helping Leslie express his fears and anxieties was recognised by the staff as paramount in helping him address issues of concern. ‘.His awareness and concern that he had not made a will due his fear of’ not doing right by everyone’ was causing him increasing stress and anxiety and had him preoccupied and withdrawn. This type of suffering which is driven by psychological distress , threatens the integrity of the person and can have a huge effect on how physical pain is perceived and dealth with.(21) These psychosocial factors also have a direct effect on sleep(14) and fatigue(15) in advanced cancer patients and Leslie was experiencing both these symptoms. Leslies suffered from sleep disturbance and early waking and an overwhelming feeling of mental and physical fatigue .Palliative care assessment forms should be designed to elicit information on symptoms such as sleep and fatigue to ensure early intervention. While many tools such as The Edmonton Symptom Assessment System do include these symptoms, their assessment is confined to a single question and are therefore inadequate.(14.15) Fatigue and anxiety have a negative impact on quality of life (QoL) and assessment of severity should be systematic and mandatory (16) Maintaining a good QoL is central to the ethos of palliative care and therefore management of these symptoms should be paramount in the palliative care setting(17)
(Qol ass. Tools and desktop article on ESST)
Leslies awareness of his deteriorating condition and the uncertainty of the future was also causing him psychological distress and this aspect of distress generally escalates as patients experience subsequent diagnosis of cancer reoccurance.(18)and can cause great anxiety and depression(20)A family meeting was initiated and Leslie spoke openly about his fears and anxieties. There were three positive pactical decissions agreed 1. that an appointment would be made for Leslie to see his oncologist to discuss his prognosis and 2. arrangements would be made for Leslie to make a will. 3that following family discussions a decission would be made as to wheather Bridgt or Claire would be the main family contact for Leslies care and that all information would be communicated to the other family members through that person.
Prior to making his will, Leslie became very anxious ,his breakthrough pain relief was less effective and following further assessment and consultation was increased to pecfent 400 mcgs prior to mobilisation. His appetite decreased and his sleep pattern disimproved. This requirement for extra analgesia it was felt was due to his deteriorating condition but as expressed by Skevington as one of the most consistant findings when considering how psychological factors contribute to the aetiology of cancer pain is that emotional distress has a huge impact on how the patient experiences pain and how effective the response to treatment will be.(29)Enabling the resident to express his fears and concerns and providing information and help to allay those fears can ease anxieties and associated physical and psychological symptoms.(30)
‘Conceptualizations of spirituality often include the following as aspects of spirituality: the need for purpose and meaning, forgiveness, love and relatedness, hope, creativity,and religious faith and its expression’ (28)p581
Spiritual needs are well recognised and documented in the ‘total care’ context of palliative care principals and its importance in end of life care (26)Assessing spiritulality is essential in providing spiritual care and can be the most important aspect of patient need when death is imminent.(28) However while there are many models for spiritual assessment there are no validated assessment tool (32) .The European Organisation for Research and Treatment of Cancer Qol group began in 2001 to develop a spiritual assessment tool, but the individual concept of what spirituality means and the difficulty in defining spirituality makes the formulation of a standerdized assessment tool difficult.(27)Parhaps spirituality shoud be more ……ref red book
Leslie described himself as religious, a member of the Church of Ireland but partook in all religious cermonies on the ward regardless of denomination. Through the act of active listening and assessing non verbal indicators it was apparent that spirituality to Leslie was synonymous with his values and relationships as much as his religious affiliation. He loved conversation , had a wide circle of friends and his tolerance and endurance of his illness portrayed an acceptance and selfless attitude towards life and death .He was visited by his rector on a weekly basis and obviously had a strong relationship which was based on the mutual love of motorbikes and dogs. This rapport was invaluable when Leslie was faced with difficult decisions about his family relationships and later when death was imminent.
Despite the major emphasis of physical pain in palliative care there is a greater awareness of the effects of As stated in the World Health Organisation definition of palliative care early detection and impeccable assessment and treatment of psychological, spiritual and social pain are included with that of physical pain.(12)
Leslie felt a great sense of peace having resolved his financial issues and in doing so had witnessed closure to his fears and anxieties through a more open relationship with Claire and Bridget. The act of making a will ,leaving a legacy ,witnessing the reconciliation of relationships between Biddy and Claire and the oppertunity to say goodbye to loved ones had a huge impact on the quality of life and death that he experienced while in our care.
Education and the resources necessary to incorporate practical psychological pain management strategies such as cognitive therapies and psychological pain management methods into the present health system is a major challenge(13)These therapies can be incorporated as adjuvant therapies in the WHO analgesic ladder.(13) While there is greater awareness of the significance of .with the first psycooncologist unit in st james hosp (20) …since the first writings of cicely saunders on total pain it is a well documented but poorly resourced concept.
(1)Pederson. J. Listening effectively: ‘Always react’ in Finegan W. McGurk A. Care of the cancer patient.Radcliff publishing. Oxford New York 2007 p. 6&7.
(2)International association of pain ,2008 def accessed fromhttp://www.iasp-pain.org/AM/Template.cfm?Section=Pain_Defi..
5.Ferrell BR. Coyle N, editors. The Nature of Suffering and the Goals of Nursing.Oxford:Oxford University Press ; 2008.
(6)Portenoy RK. Mathur G. Cancer Pain chapter 8 in Yeung SCJ. Escalante CP. Gagel RF. Medical Care of Cancer Patients :Peoples Medical Publishing House, Shelton ,Connecticut. 2009 p. 64. P.60
(7)Hoskin P. The range of treatments for pain due to cancer in Forbes K. (editor) Opioids in Cancer Pain : oxford university Press ;Oxford. 2007 p. 12,13
(8)Fink R. Gates R. Pain Assessment .In Ferrell B R, Coyle N, editors.Textbook of Palliative Nursing. 2nd ed.Oxford: Oxford University Press;2006. . P. 97-98 P. 106-109. P. 110
(9)Caraceni A, Chernry N, Fainsinger R, Kaasa S, Poulain P, Radbruch L,et al. Pain measurement tools and methods in clinical research in palliative care: recommendations of an Expert Working Group of the European Association of Palliative Care. J Pain Symptom Manage 2002;23(3):239-255
(10) )Simpson KH. Philosophy of cancer pain management .In: Simpson K H, Budd K editors. Cancer Pain Management, a comprehensive approach. Oxford: Oxford University Press; 2003. p. 2-4.
(11)Holen JC, Polit C, Hjermstad MJ, Loge JH, Fayers PM, Caraceni A et al. Pain Assessment Tools: Is the Content Appropriate for Use in Palliative Care? J Pain Symptom Manage 2006;32:567-580
(12) World Health Organisation. Definition of Palliative care [online] 2002 [cited 201 Feb 21st]; Available from: www.who.int/cancer/palliative/definition.
(13) Keefe FJ, Abernethy AP, Campbell LC,Psychological Approaches to Understanding and Treating Disease ‘Related Pain Annu. Rev. Psychol. 2005;56:601’30
(14)Hearson B, Sawatzky JAV, Sleep disturbances in patients with advanced cancer. Int. J Palliat Nurs 2008;14(1):30-37
(15)Hawthorn M .Fatigue in patients with advanced cancer. Int. J Palliat Nurs 2010;16(11):536-541
(16)van den Beuken-van Everdingen M, de Rijke JM, Kessels AG, Schouten HC, van Kleef M,Patijn J,Quality of Life and Non-Pain Symptoms in Patients with Cancer. J Pain Symptom Manage 2009;38(2):216-233.
(17) Hj’rleifsd’ttir E, ‘skarsson GK, Psychological distress in Icelandic patients with repeated recurrences of cancer. Int. J Palliat Nurs 2010;16(12):586-592
(18)Stevens E.Extending knowledge of terror management theory to improve palliative nursing care. Int. J Palliat Nurs 2009;15(8):368-370
(19) (7) Bruera E. Kuehn N. Miller MJ. Selmser P. Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991 Summer;7(2):6-9.
(20)Collier S. Dr Sonya Collier.Irish Independent.2011 Feb 21; p. 10
*(21)Portenoy RK. Mathur G. Cancer Pain chapter 8 in Yeung SCJ. Escalante CP. Gagel RF. Medical Care of Cancer Patients :Peoples Medical Publishing House, Shelton ,Connecticut. 2009 p. 60
(22)Archimedes Pharma Europe .New Pecfent .Dublin; Archimedes Development Ltd;2010
(23)Hui D. Bruera E. Breakthrough pain in cancer patients:the need for evidence. Eur J Palliat Care 2010;17(2):58-67
(24)Fallon M, McConnell. Morphine. In: Forbes K, editor. Opioids in cancer pain. Oxford: Oxford University Press;2007. p. 57 .
*(25)Mac Lellan K. Management of Pain Cheltenham Nelson Thornes Ltd 2006
(26)Watts JH, Psaila C, Spiritual care at the end of life: whose job is it? Eur J Palliat Care 2010;17(3):126-130*
(27) Vivat B. Measures of spiritual issues for palliative care patients: a literature review. Palliat Med 2008; 22:859-868
(28)Taylor EJ. Spiritual Assessment In: Ferrell BR, Coyle N.editors Textbook of Palliative Nursing. 2nd ed.Oxford: Oxford University Press;2006. P. 581-594
(29) Skevington SM .Psychological support in Simpson KH. Budd K. Editors Cancer Pain Management ,A comprehensive approach Oxford medical publications, New York 2000 chapter 3 p. 23 to 26. .
(30) Regnard C. Hockley J. A guide to symptom relief in palliative care 5th ed. :Radcliff Medical Press Oxon 2004
(31)Kaasa S, Hjermstad MJ, Caraceni A. BTcP: A Physical, Psychological and Financial Burden for the Patient Eur J Palliat Care 2009: supplement.
(32) Gordon T, Mitchell D. A competency model for the assessment and delivery of spiritual care. Palliat Med 2004; 18:646-651
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