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1. Palliative Care An Holistic Approach Updated 12/9/2009 1

2. Palliative Care Learning Outcomes for this work shop: 1. Demonstrate knowledge of the principles and philosophies of a palliative approach in the Aged Care setting. 2. Improve the knowledge of the roles of the palliative care team. 3. Understand pain & symptom management principles. 4. Demonstrate an understanding of the psychological & spiritual support mechanisms. 5. Know where to seek more advice. Updated 12/9/2009 2

3. Palliative Care Standard 2.9 – Palliative Care Expected outcome – the comfort & dignity of terminally ill residents is maintained. Criteria – Policies & Practices provide: A. that residents wishes are identified, respected and where possible, acted upon in relation to their terminal care; and B. individual palliative care programs that enable family involvement, accommodate religious and cultural beliefs and recognise an individual’s right to die with dignity. Updated 12/9/2009 3

4. Palliative Care Definition : WHO – Palliative care is 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 , assessment & treatment of pain and other problems, physical, psychosocial and spiritual. Updated 12/9/2009 4

5. Palliative Care Palliative care : Provides relief from pain and other distressing symptoms, Affirms life & regards dying as a normal process, Intends neither to hasten or postpone death, Integrates the psychological & spiritual aspects of patient care, Offers a support system to help patients live as actively as possible until death, Updated 12/9/2009 5

6. Palliative Care 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 the patient and their family, including bereavement counseling, Will enhance the quality of life and may also positively influence the course of the illness. (WHO – definition of palliative care – www.who.int/cancer/palliative/definition/en/) Updated 12/9/2009 6

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8. Palliative Care The need for palliative care does NOT depend on diagnosis, but on the individual person’s needs – particularly the complexity & severity of a person’s distress or their potential for distress. Updated 12/9/2009 8

9. Palliative Care The primary goal of palliative care in an aged care setting is to : Improve the resident’s level of comfort & function, And to address their psychological, spiritual & social requirements. Updated 12/9/2009 9

10. Palliative Care Updated 12/9/2009 10 These categories underpin the provision of care, and therefore the guidelines to assist practice through an educative process. The guidelines are inter-related and no one should be considered in isolation from the others

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12. Palliative Care A palliative approach aims to improve the quality of life for individuals with a life-limiting illness and their families, by reducing their suffering through early identification, assessment and treatment of pain, physical, cultural, psychological, social, and spiritual needs. Updated 12/9/2009 12

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14. Palliative Care Underlying the philosophy of a palliative approach is a positive and open attitude towards death and dying. The promotion of a more open approach to discussions of death and dying between the aged care team, residents and their families facilitates identification of their wishes regarding end-of-life care. Updated 12/9/2009 14

15. Palliative Care A palliative approach is not confined to the end stages of an illness. A palliative approach provides a focus on active comfort care and a positive approach to reducing an individual’s symptoms and distress. This facilitates residents’ and their families’ understanding that they are being actively supported through this process. Updated 12/9/2009 15

16. Palliative Care What are the barriers to a Palliative Approach? 1. In Western society people are often afraid of discussing death & dying. 2. There is confusion between palliative care and euthanasia. 3. ACF’s often do not have up to date knowledge and definitive guidelines about Palliative Care and when and how to implement it. 4. Specialist knowledge (ie. A Palliative Care team) is often not sought. Updated 12/9/2009 16

17. Palliative Care An Australian study has projected that there will be a 70% increase in older Australians over the next 30 years with profound disabilities. Conditions included are : Neurological – Parkinson’s, stroke, dementia, motor neurone disease. Musculoskeletal – arthritis, osteoporosis, muscular dystrophy, Circulatory – vascular disease, heart attack, heart failure. Respiratory – COPD, asthma, emphysema, cystic fibrosis. Endocrine – diabetes. HIV/AIDS Cancer Renal & liver disease. Updated 12/9/2009 17

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19. Palliative Care Advance Care Planning : The Aged Care Act stipulates that residents must be given the opportunity to make choices about their care. This includes their right to agree or refuse treatments offered. Advanced Care Planning is a process which enables the resident to be able to make decisions about their end-of-life wishes in writing , which then removes the burden of responsibility from the surrogate and leaves the control with the resident. Updated 12/9/2009 19

20. Palliative Care If the resident is unable to make these decisions, It’s important for families to be involved in all steps of the planning process, including acceptance or refusal of treatments and ongoing care. Updated 12/9/2009 20

21. Palliative Care Having “The Discussion” regarding end-of-life wishes . Best done either before admission to the ACF, or immediately upon arrival. If not done, treatment decisions will be made on the run in crisis mode, and unnecessary transfers to hospital or unwanted treatments which do not meet the goals or wishes of the resident or family may occur. Updated 12/9/2009 21

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23. Advance Directive documents tend to address issues such as pain control, comfort care, place of dying and hospital admission. These documents need to be flexible to take into account unforeseen incidents, such as fractured hip or pneumonia. No one should be forced to participate in the discussion if not willing. Updated 12/9/2009 23

24. Palliative Care. See document – “Clinical Practice Guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.” www.mja.com.au MJA supplement, 18 June 2007, Volume 186, number 12. Updated 12/9/2009 24

25. Palliative Care Identifying the three forms of Palliative care - 1. The Palliative Approach 2. Specialised palliative service provision 3. End-of-life care. Updated 12/9/2009 25

26. Palliative Care 1. The Palliative Approach – Appropriate when the resident’s condition cannot be cured, and the symptoms require intervention. The goals are to : Improve the resident’s level of comfort & function, And to address their psychological, spiritual & social requirements. Updated 12/9/2009 26

27. Palliative Care 2. Specialised palliative service provision – appropriate when the resident requires specific & focused input by a specialist team – eg. Eastern Palliative Care. Not meant to replace the palliative approach, but runs in conjunction with it. Updated 12/9/2009 27

28. Palliative Care The goals are to assess and treat complex symptoms being experienced by the resident and providing the information to the aged care team on complex issues like family issues, ethical dilemmas, distress. Should be managed in a timely manner, and not in response to crisis. May require transfer to hospice for expert palliation if facility is not able to manage. Updated 12/9/2009 28

29. Palliative Care 3. End-of-life care – implemented in the final days or weeks of life. Care decisions may need to be reviewed on a frequent basis – daily or more often. The goals are focused towards the resident’s physical, emotional & spiritual comfort, and supporting the family. Can be a difficult time to identify as residents often have multiple co-morbidities and have a gradual slide in their condition. Updated 12/9/2009 29

30. Palliative care Symptoms that may indicate the end-of-life phase : Requiring more frequent intervention – pain management, positioning, etc. Loss of appetite (anorexia) Profound weakness Trouble swallowing (dysphagia) Dry mouth Weight loss Lapsing in and out of consciousness Day to day deterioration. Updated 12/9/2009 30

31. Palliative Care It is important to : Respect the choices that the resident & family members make with regard to treatment options, Be available to discuss issues with residents and family members, Provide information in a pro-active way – organise family & doctor meetings when the resident’s condition changes, to keep them informed every step of the way. Allow the family to prepare for the imminent death of their loved one by keeping them informed of changes as they occur. Updated 12/9/2009 31

32. Palliative Care Who is involved in the Palliative (multidisciplinary) Care Team? Updated 12/9/2009 32

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34. 1. Personal care assistants 2. GP’s 3. RN’s 4. Palliative Care nurses 5. Volunteers 6. Chaplains or pastoral care workers 7. Pharmacists 8. Pain specialists 9. Activities co-coordinators, music therapists, social works, aromatherapists 10. Pharmacists 11. Specialist – oncologist, radiotherapists, surgeon 12. Psychologist, grief counselor. Updated 12/9/2009 34

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37. Palliative Care Updated 12/9/2009 37 Palliative Care is a TEAM effort.

38. Palliative Care It is critical that one member of the team assumes the coordinator’s role – eg . RN, GP or DON. Teamwork between the RN & GP is essential. The team must be able to meet regularly and assess and discuss management and progress. The team should be non- heirarchical . The staffing skill mix should be determined on the individual needs of the family members and resident. It is recommended that at least one member of the team has formal training in the palliative approach. Updated 12/9/2009 38

39. Palliative Care Pain & Symptom Management Pain – “pain is a subjective sensation… and is what the patient says it is, and not what others think it should be…” 1. physical suffering or distress, as due to injury, illness, etc. 2. a distressing sensation in a particular part of the body: a back pain. 3. mental or emotional suffering or torment: I am sorry my news causes you such pain. www.dictionary.com Updated 12/9/2009 39

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41. Palliative Care Other symptoms : Loss of appetite (anorexia) Nausea Profound weakness / fatigue Trouble swallowing ( dysphagia ) Dry mouth Weight loss Lapsing in and out of consciousness Day to day deterioration. Insomnia Bowel problems – diarrhoea / constipation Updated 12/9/2009 41

42. Palliative Care Pain Management Often under treated in many ACF’s and hospitals. Often misunderstood. Treated on fixed regimes that are not flexible or responsive to the need of the resident, eg . 4/24 analgesia. Updated 12/9/2009 42

43. Palliative Care Often treated only in the physical element, not including spiritual, social & psychological elements. In an Australian study it was found that 22% of residents who stated they had no pain had no record of medication administration recorded in their case notes, and 16% did not have analgesia ordered at all! Updated 12/9/2009 43

44. Palliative Care Barriers to pain management : Lack of knowledge among nurses and GP’s Lack of observation skills for pain indicators among PCA’s, and inadequate reporting. Fear of the consequences of reporting pain among residents – reluctant to complain. Residents become resigned to their pain. Generational “stoic” ideals – ‘stiff upper lip’. Cultural misconceptions. Updated 12/9/2009 44

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46. Palliative Care Review ‘Fast Fact #008 – Morphine & Hastened Death’. What are the differences between euthanasia & palliation? Updated 12/9/2009 46

47. Palliative Care Morphine toxicity will cause drowsiness, confusion and loss of consciousness before the respiratory drive is compromised. If the intent of the therapy is to help the patient and have a potentially good outcome – eg . Relief of pain - but there is a potentially adverse secondary consequence, the treatment is considered ethical. Euthanasia is not an example of double effect – the intent is to end the patient’s life. Updated 12/9/2009 47

48. Palliative Care If the intent of giving morphine is to relieve pain, and accepted dosing guidelines are adhered to, then : The treatment is considered ethical The risk of a potentially adverse secondary effect is minimal, and The risk of respiratory depression is vastly over-estimated. Updated 12/9/2009 48

49. Palliative Care Tools for assessing pain : 1. Pain assessment – should state pain location, type, frequency & severity, as well as the impact this pain has on the ADL’s. 2. Abbey Pain scale for patients unable to verbalise pain. Updated 12/9/2009 49

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51. Palliative Care Updated 12/9/2009 51 Deciding how and when to implement analgesia.

52. Palliative Care Opioids used conventionally for moderate pain - codeine, hydrocodone , oxycodone . Typically combined with non- opioid (e.g. Tylenol) which limits dose titration Opioids used conventionally for severe pain - morphine, fentanyl , oxycodone , methadone, oxymorphone Updated 12/9/2009 52

53. Palliative Care Tolerance to analgesia: A change in the dose-response relationship induced by exposure to the drug and manifest as a need for higher dose to maintain an effect. Develops at different rates to these varying effects - respiratory depression, nausea, constipation Analgesic tolerance is rarely a problem - opioid doses remain relatively stable in the absence of worsening pathology and increased opioid requirements after stable periods is often a signal of disease progression Updated 12/9/2009 53

54. Palliative Care Principles of Pain Management : Mild pain - Regular (4/24, 6/24 or 8/24) use of Paracetamol or NSAID’s. Updated 12/9/2009 54

55. Palliative Care Moderate Pain – regular weak opioids – codeine or tramadol +/- adjuvant therapy steroids, NSAID’s (used with caution), tricyclic antidepressants, anticonvulsants. Updated 12/9/2009 55

56. Palliative Care Severe Pain – paracetamol + opioids patches – fentanyl ( Durogesic ) or buprenorphine ( Norspan ), morphine – oral, IM or S/C – by butterfly or syringe driver. Updated 12/9/2009 56

57. Palliative Care Management of side effects of pain management : Constipation – regular aperients, increased as the opioids increase. Nausea & vomiting – usually occurs initially, then settles. Controlled with Maxalon , sometimes stemetil , and Zofran . Also can be controlled with phenergan . Dry mouth – regular mouth care, ice chips, regular sips. Confusion or hypersomnolence (tend to cause sleep) – refer to GP or specialist for review. Updated 12/9/2009 57

58. Palliative Care Fatigue – NEVER normal – always a symptom of something! Causes – anorexia/ cachexia (wasting emaciation) - boredom - pain - psychological issues – depression & anxiety. - sleep disturbance - medications - dehydration - nausea / vomiting * Treating the cause can help to alleviate fatigue. Updated 12/9/2009 58

59. Palliative Care Cachexia – a syndrome combining weight loss, loss of muscle and visceral protein, anorexia, chronic nausea and weakness. Common in cases of cancer, but also chronic heart failure, renal failure and dementia. More often a cause of distress to the family, and may cause extra anxiety about their loved one’s condition. Family requires extra education about not force feeding their loved one at this time. Can be managed with protein drinks and supplements if patient allows it. Updated 12/9/2009 59

60. Palliative Care Nausea & Vomiting: Causes in palliative care – 1. decreased gastric motility or gastroparesis – from decreased mobility, medications or decreased neuromuscular control) 2. constipation – treat with aperients 3. medications – opioids – treat with anti emetics 4. hyperacidity – treat with antacids 5. dehydration – treat with fluids or sips 6. unpleasant odours or cooking smells – remove the source. TREAT THE CAUSE TO HELP ALLEVIATE SYMPTOMS. Updated 12/9/2009 60

61. Palliative Care Personal Care – The personal carer can do so much to ensure that the final stages of life are as comfortable as possible. Some of the areas to be managed are : Personal hygiene Mobility & positioning Breathing difficulties Nutrition & hydration Elimination Skin care Spiritual needs Updated 12/9/2009 61

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63. Palliative Care Personal hygiene – Ensure adequate analgesia has been given prior to hygiene. Ensure room is warm and comfortable. Have everything prepared before commencing. May want to use aromatherapy – under the guidance of a trained aromatherapist , and resident or family permission. Updated 12/9/2009 63

64. Palliative Care Gentle sponging and massage can be very soothing. This is a time of intimate contact and a good opportunity to chat to the resident about their care, fears and worries. If skin is very delicate, may want to use a bath oil rather than soap – this is a good time to monitor skin integrity. Change linen and gowns as frequently as needed – the resident may become clammy as the time of death approaches. Attend mouth care frequently. Updated 12/9/2009 64

65. Palliative Care Mouth Care – Poor oral health can result from : Medications – opioids , chemotherapy Mouth breathing Oxygen therapy Decreased nutrition, particularly zinc & Vitamin C Oral thrush A good assessment is vital – treating the cause, and implementing thorough and regular mouth care is critical to patient comfort. Updated 12/9/2009 65

66. Palliative Care Updated 12/9/2009 66 A soft tooth brush can clean teeth and mouth without damaging soft mucosa. Using mouth swabs and mouth wash can provide relief to a dry mouth. Treat oral thrush with( clotrimazole ) Canesten drops Warm salt water mouth rinses can help ulcers and other breaks. Peppermint lip cream for cracked lips.

67. Palliative Care Mobility & Positioning As the palliative process progresses, mobility will decrease. The resident will require close monitoring of mobility devices As resident becomes bed / chair bound, analgesia may be required prior to any repositioning. Regular skin assessments are required, and use of pressure relieving devices can be implemented – eg . Spenko mattresses, sheep skins, spenko booties, air mattresses, wedges. Gentle massage and passive movement of limbs can help prevent contractures. Updated 12/9/2009 67

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69. Palliative Care Shortness of breath ( dyspnoea ) Resident may experience shortness of breath – some techniques to aid this are : Updated 12/9/2009 69

70. Palliative Care Positioning semi-recumbent or on the side Using a fan to blow air around the room. Oxygen therapy – only to be used under strict guidelines – initiating it at this time contravenes the palliative approach. Suctioning – only to be done by RN. Increasing morphine +/- hyocine (to inhibit salivary secretion if very ‘ rattly ’). Gentle physiotherapy. Updated 12/9/2009 70

71. Palliative Care Nutrition & Hydration – Food & fluids should be offered throughout the palliative phase, but never forced. Causes of refusal must be explored – eg . Hypersomnolence from morphine review by physician; or nausea treat with anti-emetics. Studies indicate that patients being palliated do not experience hunger or thirst, and remain comfortable with sips of water or ice chips. (Guidelines for a palliative approach – p.88) Updated 12/9/2009 71

72. Palliative Care It is considered best practice to encourage food for comfort and enjoyment, rather than for nutrition’s sake – ie . Encourage what ever they want to eat, rather than using protein drinks, etc. Enteral feeding may need to be considered if dysphagia occurs early in the illness. PEG or tube feeding is not recommended in later stages, as the body may not be able to digest this amount of nutrition when the body’s systems are shutting down, and there is a greater risk of diarrhoea , vomiting and aspiration. Updated 12/9/2009 72

73. Palliative Care Elimination – Constipation – a thorough assessment is vital – if they are not eating they will not need to defaecate ! Is their abdomen distended? Are they straining? Do they say they need to go? Is there unusual nausea – not related to medication? Hard stools? Treat with laxative program – gentle osmotics , or bulking agents with suppositories. Updated 12/9/2009 73

74. Palliative Care Elimination – Incontinence – may be faecal and / or urinary Assess and use continence aids as appropriate. If perineal thrush or severe rash is present, the pads can be removed and the resident nursed on a kylie. Prompt & gentle perineal care is critical – use of moisture barriers, thorough gentle drying (patting) of the area will minimise trauma and discomfort. Stoma & catheter care to be attended as required. Updated 12/9/2009 74

75. Palliative Care Skin care – Skin integrity can be altered due to oedema of limbs, cachexia , fragile skin, sweating, incontinence, chemotherapy or radiotherapy. Oedema – elevate the limb, minimal handling, bed cradle, using ‘ blueys ’ if the limb is weeping. Prompt wound management Use of medical sheep skins, pressure mattresses, spenkos , wedges, etc. Gentle sponging, avoiding soaps – use bath oils or lotions. Soft cotton gowns that wont increase sweating. Prompt management of incontinence. Ensure diet & fluids are adequate depending on stage of illness. Updated 12/9/2009 75

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77. Palliative Care Spiritual needs – If advance care planning has been done well, the spiritual needs of the resident should be clearly known. Cultural and religious preferences must be respected and acted upon. Family involvement at this time is critical for access to family priests or specific cultural practices. Pastoral care workers can help comfort staff and residents. Complementary therapies can be important to the resident and family. Updated 12/9/2009 77

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79. Palliative Care The room – Should be preferably a single room. Should be well lit, and well ventilated Remove any unnecessary clutter or furniture. Encourage mementos, picture, flowers, or other items of comfort to be within sight. May require a fold out bed, or a recliner chair for a relative to sleep over. May have aromatherapy or candles – under strict guidelines. Have the resident’s favorite music on a CD player. Updated 12/9/2009 79

80. Palliative Care The family – Good communication between the facility staff and the family is critical at all times through out the palliative process. The care staff might be close to the resident, and also be grieving. This is the time for the family – you should be comforting them, not the other way around. Staff should seek counselling if they cannot cope. The family should be allowed to stay or visit when ever they wish. The family members may wish to help with personal care – this needs to be monitored carefully, but encouraged if it is positive for the resident and family member. Professional, religious or spiritual counselling or support can be very helpful at this time. Updated 12/9/2009 80

81. Palliative Care Signs of imminent death – Movement slows, facial muscles relax Gastrointestinal function slows – abdominal distension, incontinence, nausea =/- vomiting may occur. Body temperature falls – can feel cool, clammy, looks pale. Circulation fails – pulse can be irregular, weak & thready. Respiratory system fails – Cheyne -Stokes breathing, or weak and shallow respirations can occur. Often the ‘death rattles’ occur as secretions pool in the pharynx and bronchi – can be distressing to the family, but not the resident. Loss of consciousness. Updated 12/9/2009 81

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83. Palliative Care Signs of death – No pulse No respirations No blood pressure Pupils fixed and dilated. The doctor is called to declare death. Updated 12/9/2009 83

84. Palliative Care Care of the body after death – Should have been determined in the Advanced Care Plan. The family / loved ones should be allowed to stay as long as they want. Hygiene care may be necessary if incontinence has occurred – standard precautions followed. Cultural / religious wishes are to be taken into account. Updated 12/9/2009 84

85. Palliative Care Ideally, the body should be re- alligned in bed, and made to look comfortable and presentable for any family or friends who may wish to spend time with the resident. Place a rolled towel under the jaw if mouth is open. Clutter is removed from the room, and fresh flowers placed if possible. The funeral home is contacted when the family is ready. Follow the facilities procedures regarding jewellery or valuable removal. Updated 12/9/2009 85

86. Palliative Care Where to seek help – Palliative Care Australia Local Palliative Care Associations Grief counsellors www.health.gov.au www.eperc.mcw.edu www.pallcare.org.au www.pallcare.asn.au Updated 12/9/2009 86

87. Palliative Care References : “Guidelines for a Palliative Approach in Residential Aged Care”, Australian Government Department for Health & Ageing, 2006. www.health.gov.au/palliativecare “Fast Fact & Concept #008 – Morphine & hastened death”, Von Gunten , C. www.eperc.mcw.edu/fastFact “Clinical Practice Guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers.” www.mja.com.au MJA supplement, 18 June 2007, Volume 186, number 12. “Long Term Care Assisting – Aged Care & disability”, Scott, K., Webb, M., Sorrentino , S. & Gorek , B. Elselvier Australia, Marrickville , NSW, 2204. “National Palliative Care Strategy – A National Framework for Palliative Care service Development”, Publications Production Unit, Commonwealth Department of Health & Aged Care, 2000. www.pallcare.asn.au Updated 12/9/2009 87