1. An Holistic ApproachUpdated 12/9/20091

2. Palliative Care Learning Outcomes for this work shop: 1. Demonstrate knowledge of the principles andphilosophies of a palliative approach in the Aged Caresetting. 2. Improve the knowledge of the roles of the palliativecare 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 ofterminally ill residents is maintained. Criteria Policies & Practices provide: A. that residents wishes are identified, respected and wherepossible, acted upon in relation to their terminal care; and B. individual palliative care programs that enable familyinvolvement, accommodate religious and cultural beliefs andrecognise an individuals right to die with dignity.Updated 12/9/20093 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 distressingsymptoms, Affirms life & regards dying as a normal process, Intends neither to hasten or postpone death, Integrates the psychological & spiritual aspects ofpatient care, Offers a support system to help patients live as activelyas possible until death,Updated 12/9/2009 5 6. Palliative Care Offers a support system to help the family cope duringthe patients illness and in their own bereavement, Uses a team approach to address the needs of the patientand their family, including bereavement counseling, Will enhance the quality of life and may also positivelyinfluence the course of the illness. (WHO definition of palliative care www.who.int/cancer/palliative/definition/en/)Updated 12/9/20096 7. Updated 12/9/2009 7 8. Palliative Care The need for palliative care does NOT depend ondiagnosis, but on the individual persons needs particularly the complexity & severity of a personsdistress or their potential for distress.Updated 12/9/20098 9. Palliative Care The primary goal of palliative care in anaged care setting is to : Improve the residents level of comfort & function, And to address their psychological, spiritual & social requirements.Updated 12/9/20099 10. Palliative CareThese categories underpinthe provision of care, andtherefore the guidelines toassist practice through aneducative process.The guidelines are inter-related and no one shouldbe considered in isolationfrom the othersUpdated 12/9/2009 10 11. Updated 12/9/2009 11 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 theirsuffering through early identification, assessmentand treatment ofpain, physical, cultural, psychological, social, andspiritual needs.Updated 12/9/200912 13. Updated 12/9/2009 13 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 todiscussions of death and dying between the agedcare team, residents and their families facilitatesidentification of their wishes regarding end-of-lifecare.Updated 12/9/200914 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 individuals 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. ACFs 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 Parkinsons, 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 12/9/200917 18. Updated 12/9/2009 18 19. Palliative Care Advance Care Planning : The Aged Care Act stipulates that residents must begiven the opportunity to make choices about their care. This includes their right to agree or refuse treatmentsoffered. Advanced Care Planning is a process which enables theresident to be able to make decisions about their end-of-life wishes in writing, which then removes the burdenof responsibility from the surrogate and leaves thecontrol with the resident.Updated 12/9/2009 19 20. Palliative Care If the resident is unable to make thesedecisions, Its important for families tobe involved in all steps of the planningprocess, including acceptance orrefusal of treatments and ongoing care.Updated 12/9/2009 20 21. Palliative Care Having The Discussion regarding end-of-lifewishes. 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 22. Updated 12/9/2009 22 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 12/9/200923 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 12/9/200924 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 residents condition cannot be cured, and the symptoms require intervention. The goals are to: Improve the residents 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 PalliativeCare. Not meant to replace the palliative approach, butruns in conjunction with it.Updated 12/9/2009 27 28. Palliative Care The goals are to assess and treat complex symptomsbeing experienced by the resident and providing theinformation to the aged care team on complex issues likefamily issues, ethical dilemmas, distress. Should be managed in a timely manner, and not inresponse to crisis. May require transfer to hospice for expert palliation iffacility is not able to manage.Updated 12/9/200928 29. Palliative Care 3. End-of-life care implemented in the final days orweeks of life. Care decisions may need to be reviewed on a frequentbasis daily or more often. The goals are focused towards the residentsphysical, emotional & spiritual comfort, and supportingthe family. Can be a difficult time to identify as residents often havemultiple co-morbidities and have a gradual slide in theircondition.Updated 12/9/2009 29 30. Palliative care Symptoms that may indicate the end-of-life phase : Requiring more frequent intervention painmanagement, 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 residents 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 12/9/200931 32. Palliative Care Who is involved in the Palliative (multidisciplinary)Care Team?Updated 12/9/200932 33. Updated 12/9/2009 33 34. 1. Personal care assistants 2. GPs 3. RNs 4. Palliative Care nurses 5. Volunteers 6. Chaplains or pastoral care workers 7. Pharmacists 8. Pain specialists 9. Activities co-coordinators, music therapists, socialworks, aromatherapists 10. Pharmacists 11. Specialist oncologist, radiotherapists, surgeon 12. Psychologist, grief counselor.Updated 12/9/2009 34 35. Updated 12/9/2009 35 36. Updated 12/9/2009 36 37. Palliative CarePalliative Care is a TEAM effort.Updated 12/9/2009 37 38. Palliative Care It is critical that one member of the team assumes the coordinators 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 itis, and not what others think it should be 1. physical suffering or distress, as due toinjury, illness, etc. 2. a distressing sensation in aparticular part of the body: a back pain. 3. mental oremotional suffering or torment: I am sorry my newscauses you such pain. www.dictionary.comUpdated 12/9/200939 40. Updated 12/9/2009 40 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 / constipationUpdated 12/9/2009 41 42. Palliative Care Pain Management Often under treated in many ACFs 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 12/9/200943 44. Palliative Care Barriers to pain management : Lack of knowledge among nurses and GPs Lack of observation skills for pain indicators amongPCAs, and inadequate reporting. Fear of the consequences of reporting pain amongresidents reluctant to complain. Residents become resigned to their pain. Generational stoic ideals stiff upper lip. Cultural misconceptions.Updated 12/9/200944 45. Updated 12/9/2009 45 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 patients 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 painlocation, type, frequency & severity, as well as theimpact this pain has on the ADLs. 2. Abbey Pain scale for patients unable to verbalise pain.Updated 12/9/200949 50. Updated 12/9/2009 50 51. Palliative Care Deciding how and when to implement analgesia.Updated 12/9/200951 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, oxymorphoneUpdated 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 progressionUpdated 12/9/200953 54. Palliative Care Principles of Pain Management : Mild pain - Regular (4/24, 6/24 or 8/24) use of Paracetamol or NSAIDs.Updated 12/9/2009 54 55. Palliative Care Moderate Pain regular weak opioids codeine ortramadol +/- adjuvant therapy steroids, NSAIDs(used with caution), tricyclicantidepressants, 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 12/9/200956 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 12/9/200957 58. Palliative Care Fatigue NEVER normal always a symptom ofsomething! 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 12/9/200958 59. Palliative Care Cachexia a syndrome combining weight loss, loss ofmuscle and visceral protein, anorexia, chronic nauseaand weakness. Common in cases of cancer, but also chronic heartfailure, renal failure and dementia. More often a cause of distress to the family, and maycause extra anxiety about their loved ones condition. Family requires extra education about not force feedingtheir loved one at this time. Can be managed with protein drinks and supplements ifpatient allows it.Updated 12/9/2009 59 60. Palliative Care Nausea & Vomiting: Causes in palliative care 1. decreased gastric motility or gastroparesis from decreasedmobility, 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 thefinal stages of life are as comfortable as possible. Someof the areas to be managed are : Personal hygiene Mobility & positioning Breathing difficulties Nutrition & hydration Elimination Skin care Spiritual needsUpdated 12/9/2009 61 62. Updated 12/9/2009 62 63. Palliative Care Personal hygiene Ensure adequate analgesia has been given prior tohygiene. Ensure room is warm and comfortable. Have everything prepared before commencing. May want to use aromatherapy under the guidance of atrained aromatherapist, and resident or familypermission.Updated 12/9/200963 64. Palliative Care Gentle sponging and massage can be very soothing. This is a time of intimate contact and a goodopportunity to chat to the resident about theircare, fears and worries. If skin is very delicate, may want to use a bath oil ratherthan soap this is a good time to monitor skin integrity. Change linen and gowns as frequently as needed theresident may become clammy as the time of deathapproaches. 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, andimplementing thorough and regular mouth care is critical topatient comfort.Updated 12/9/2009 65 66. Palliative Care A soft tooth brush can clean teeth andmouth without damaging soft mucosa. Using mouth swabs and mouth washcan provide relief to a dry mouth. Treat oral thrush with(clotrimazole)Canesten drops Warm salt water mouth rinses canhelp ulcers and other breaks. Peppermint lip cream for cracked lips.Updated 12/9/200966 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 berequired prior to any repositioning. Regular skin assessments are required, and use of pressurerelieving devices can be implemented eg. Spenkomattresses, sheep skins, spenko booties, airmattresses, wedges. Gentle massage and passive movement of limbs can helpprevent contractures.Updated 12/9/200967 68. Updated 12/9/2009 68 69. Palliative Care Shortness of breath (dyspnoea) Resident may experience shortness of breath sometechniques 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 strictguidelines initiating it at this time contravenesthe palliative approach. Suctioning only to be done by RN. Increasing morphine +/- hyocine (to inhibitsalivary 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 12/9/200971 72. Palliative Care It is considered best practice to encourage food forcomfort and enjoyment, rather than for nutritions sake ie. Encourage what ever they want to eat, rather thanusing protein drinks, etc. Enteral feeding may need to be considered if dysphagiaoccurs early in the illness. PEG or tube feeding is not recommended in laterstages, as the body may not be able to digest this amountof nutrition when the bodys systems are shuttingdown, and there is a greater risk of diarrhoea, vomitingand 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 agentswith suppositories.Updated 12/9/200973 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 beremoved and the resident nursed on a kylie. Prompt & gentle perineal care is critical use of moisturebarriers, thorough gentle drying (patting) of the area willminimise 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, usingblueys if the limb is weeping. Prompt wound management Use of medical sheep skins, pressuremattresses, 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 76. Updated 12/9/2009 76 77. Palliative Care Spiritual needs If advance care planning has been done well, the spiritual needs ofthe resident should be clearly known. Cultural and religious preferences must be respected and actedupon. Family involvement at this time is critical for access to family priestsor specific cultural practices. Pastoral care workers can help comfort staff and residents. Complementary therapies can be important to the resident andfamily.Updated 12/9/200977 78. Updated 12/9/2009 78 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 tobe within sight. May require a fold out bed, or a recliner chair for a relative to sleepover. May have aromatherapy or candles under strict guidelines. Have the residents 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 iscritical 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, notthe other way around. Staff should seek counselling if they cannotcope. The family should be allowed to stay or visit when ever they wish. The family members may wish to help with personal care thisneeds to be monitored carefully, but encouraged if it is positive forthe resident and family member. Professional, religious or spiritual counselling or support can bevery helpful at this time.Updated 12/9/2009 80 81. Palliative Care Signs of imminent death Movement slows, facial muscles relax Gastrointestinal function slows abdominaldistension, 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 andshallow respirations can occur. Often the death rattles occur as secretions pool in the pharynx andbronchi can be distressing to the family, but not the resident. Loss of consciousness.Updated 12/9/2009 81 82. Updated 12/9/2009 82 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 12/9/200983 84. Palliative Care Care of the body after death Should have been determined in the Advanced CarePlan. The family / loved ones should be allowed to stay as longas they want. Hygiene care may be necessary if incontinence hasoccurred 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 madeto look comfortable and presentable for any family orfriends 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 flowersplaced if possible. The funeral home is contacted when the family is ready. Follow the facilities procedures regarding jewellery orvaluable 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.auUpdated 12/9/2009 86 87. Palliative Care References : Guidelines for a Palliative Approach in Residential Aged Care, AustralianGovernment 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 withadults 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. ElselvierAustralia, Marrickville, NSW, 2204. National Palliative Care Strategy A National Framework for Palliative Care serviceDevelopment, Publications Production Unit, Commonwealth Department of Health& Aged Care, 2000. www.pallcare.asn.auUpdated 12/9/2009 87