Principles of Palliative Care Dr. Tony O’Brien Marymount Hospice & Cork University Hospital Wednesday March 9th, 2010 Medicine is about people Every body has a story to tell. Allow people to tell their own unique story, in their own way and in their own time. No two people ever share the same illness. Definition Disease – describes a specific pathology affecting an organ, tissue or system in the body Illness – describes the subjective experience of the disease in the unique context of an individual’s life – past, present and anticipated future Birth Death PAST FUTURE Birth Death PAST 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 and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. W.H.O. 2002 Palliative Care Provides relief from pain and other distressing symptoms Affirms life, and regards dying as a normal process Intends neither to hasten nor postpone death Integrates the psychological and spiritual aspects of patient care Offers a support system to help the family cope during the patient’s illness and in their own bereavement W.H.O. 2002 Palliative Care Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated Will enhance quality of life, and may also positively influence the course of illness; Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as radiotherapy or chemotherapy, and includes those investigations needed to better understand and manage distressing clinical complications. W.H.O. 2002 My world Hospice Living Dying Living Dying Dame Cicely Saunders 1918 - 2005 ‘There is nothing more to be done’ Disease Modifying Treatments Time End Of Life Care Disease modifying Symptomatic Time Palliative Care / Bereavement Pain Pain is an unpleasant sensory and EMOTIONAL experience…… Pain is always subjective Pain is what the patient says hurts Pain is what the patient says it is Pain Types Nociceptive Somatic Visceral Mixed Neuropathic Peripheral Central Nociceptive Pain Stimulation of peripheral sensory receptors Neural pathways intact and functioning Somatic pain: well localised Visceral pain: less well localised; may be referred to cutaneous sites Neuropathic Pain Occurs as a result of aberrant somatosensory processing in the nervous system Central, peripheral or both Diagnosis is based on history Pain in an area with abnormal neurology findings is typically neuropathic Breakthrough Cancer Pain Transient exacerbation of pain that occurs either spontaneously, or in relation to a specific predictable or unpredictable trigger, despite relatively stable and adequately controlled background pain. Davies, A et al. APM Guidelines,2009 Measurement Visual Analogue Scale No Pain Worst Pain Numerical Rating Score 0 1 2 3 4 5 6 7 8 9 Verbal Descriptor Scale None Mild Moderate Severe Excruciating 10 Assessment Site Radiation Duration Progression Severity Frequency Significance Effect on mood Quality Precipitating Factors Aggravating Factors Relieving Factors Effect on activity Effect on sleep Treatment History Medication(s) Route Dose Compliance Duration Concerns re meds. Benefits Adverse effects Non-drug Rx Non-medical Rx Patient’s views Relative’s views Palliative Interventions Surgery Radiology Chemotherapy / Systemic therapy Radiotherapy Anaesthesia Psychiatric / psychological Surgery Excision e.g. Breast carcinoma Debulking e.g. Brain metastasis Debridement e.g. Fungating tumour Diverting (Stoma) e.g. Bowel obstruction Stabilisation e.g. Prophylactic pinning of bone metastasis Interventional Radiology Gastrointestinal stents Biliary stents Renal stents Paracentesis Pleural drain Gastrostomy tube Vascular stents / Filters Systemic therapy Pain & symptom relief Functional Improvement ? Life Prolonging ? Life enhancing - Balance Radiation Therapy Metastatic bone disease SVC obstruction Spinal Cord compression Brain metastases Bleeding Ulcerating / fungating tumours Tumour shrinkage Anaesthesia Nerve blocks Plexus blocks Epidural medication Intrathecal medication Pain Distress Severity (Visual Analogue Scale / Verbal rating score) Previous pain experience Mood (Pain tolerance threshold) SIGNIFICANCE Pain Control - Essentials Believe, do not doubt! Detailed assessment of EACH pain Understand common pain types Understand treatment modalities Total pain concept Total Pain Physical Emotional Pain Social Spiritual W.H.O. Analgesic Ladder Strong Opioids Weak Opioids Non-Opioids +/Adjuvants +/Adjuvants Adjuvant Drugs Non-steroidal anti-inflammatory drugs Corticosteroids Anti-convulsants Anti-depressants Anti-spasmodics Anxiolytics Local anaesthetic agents NMDA receptor antagonists Strong Opioids Fentanyl Oxycodone Hydromorphone MORPHINE Diamorphine Methadone Buprenorphine Analgesic drugs Drug & Dose Route & Dose interval Breakthrough pain Titration Side-effect prophylaxis Sequential trial / Opioid Switch Adjuvant drugs Levy MH. NEJM, 1996. 335:10 Dose – limiting toxicity Central nervous system* Gastrointestinal system* Endocrine system Immune system Others * hypercalcaemia Opioid induced CNS toxicity Sleepiness, drowsiness Confusion Visual hallucinations Myoclonus Pruritus Distorted sound of voice Constipation Not just related to bowel frequency Opioid induced bowel dysfunction Primary feature of dose limiting toxicity Patients may select pain over bowel complications Tolerance does NOT develop Constipation associated features Anorexia Nausea / vomiting Reflux Pain / cramps Distension Diarrhoea Borborygmi Obstruction Perforation Peritonitis Incomplete evacuation Haemorrhoids Fissures Confusion Urinary retention Opioid induced bowel dysfunction Mediated by mu opioid receptors Reduced and in-coordinated gut motility Decreased secretions (including pancreatic and biliary juice) Increased sphincter tone Resulting in OIBD OIBD / Mechanism Based Therapy OIBD mediated by action of opioid on GUT mu receptors Selective blockade of peripheral receptors Maintain centrally mediated analgesia Avoid risk of opioid withdrawal Total Pain Physical Emotional Pain Social Spiritual Uncontrolled pain ‘the greatest reason for uncontrolled pain is the failure by doctors and nurses to appreciate fully that pain is NOT just a physical sensation…. … there is ALWAYS more to analgesia than analgesics!’ Dr. Robert Twycross Spiritual Pain Failure to find any meaning The ‘why’ question? Anger, resentment, confusion, bewilderment Infrequently recognised by patients, families or health care professionals May aggravate physical symptoms Case study 37 year old married lady Previously healthy February 2011: Fatigue, back pain, nausea Investigated: Carcinoma gastro-oesophageal junction Carcinomatosis peritonei Obstructive uropathy / bilateral stents Duodenal obstruction Biliary obstruction / mass at head of pancreas Rapidly progressive disease Family tree 7 Spiritual anguish I don’t ask ‘why me’? I used to but not now. I just have to fight this, get better I can’t give up. I have too much to live for. I feel angry all the time. I can’t sleep What did he ever do to deserve this. He’s only 7, he never harmed anyone. Why is he being punished? I just hope the chemotherapy can get rid of it Birth Death PAST Expressions of Spiritual Pain She never smoked and only took a drink at Christmas It doesn’t make any sense What did she ever do to deserve this? What’s the point of all this? She never harmed anybody It’s just not fair Responding to Spiritual Pain Not about providing answers or solutions Avoid pious platitudes Staying with the questions Staying with the pain Staying with the uncertainty Staying with the person Being there!!! Pain SUFFERING