Care of the dying 超越痛苦‧死亡寧定 Care of the dying 謝俊仁 Tse Chun Yan

Depersonalisation of death & dying Even the care for the dying is “system by system”, “organ by organ” Death as enemy! Death as failure!

What is palliative care ? WHO definition: By multidisciplinary team approach Affirms life and regards dying as a natural process Neither hastens or postpone death Provides relief from pain and other distressing symptoms Integrates physical, psychological, social and spiritual aspects of care Support the patients to live as actively and fully as possible Support the family during the illness and during grief

疼痛、嘔心、氣促、咳嗽、食慾不振、便秘、失眠、 口乾、水腫、疲倦、四肢無力、腹脹、消瘦等 擔憂、緊張、傷心、消沈、內咎、抑鬱、無助、逃避、 無奈、失望、矛盾、孤獨、不忿、期待早死等 失去工作能力、不能照顧家人、減少外出、怕見 朋友、要依賴他人、失去外表、失去自我形像等 對人生存疑、懷疑生命的價值、如何尋找活著的意義 社 SOCIAL 社 SOCIAL 靈 SPIRITUAL 靈 SPIRITUAL 身 PHYSICAL 身 PHYSICAL 心 PSYCHOLOGICAL 心 PSYCHOLOGICAL A personal and unique experience The suffering of whole person

‘It hurts everywhere’ ‘I don’t look the same now’ ‘I’m no longer a good mother’ ‘I can’t do what I used to do’ ‘I am useless’ ‘I have no future’ ‘I haven’t told them I’m sorry’ ‘I would rather die’ ‘Nobody can understand me’ ‘Why do I have to suffer ?’ How a patient tells you  multiple symptoms  loss of image  loss of role  loss of function  loss of dignity  hopelessness  broken relationships  loss of will to live  disconnectedness  meaninglessness What she is suffering from

How to help the patient? Breaking bad news Decisions on specific treatments towards the disease Control of physical symptoms Psychosocial and spiritual support Decisions on life sustaining treatment

Breaking bad news Why should we let the patient know the diagnosis? Cultural factors? How should we do it?

Decisions on specific treatment towards the disease A balance of benefit, burdens and risk Respect the patient’s choice Problem of cost

Control of physical symptoms Pain assessment Diagnosis of the cause of pain Pain control –  Analgesic ladder  Regular dosage  Myths about the use of strong analgesics  Other medications  Other modalities of treatment  “Total pain”

 The more intense it is  The more unpredictable it is  I believe that pain cannot be controlled  I believe that the pain has no end  I believe that no one believes in my pain  I believe that it is threatening my life  I fail to make any sense out of the pain Suffering as a personal experience Pain is more likely to cause suffering if..

Psychosocial and spiritual support Multidisciplinary team approach Examples of specific therapies ◦ Meaning centered therapy ◦ Dignity therapy

A meaning of personal significance & importance Transcendence to a wider landscape Sensation Feeling Cognition “I have a cancer which is not curable” “My body is getting weaker and weaker” “I feel sad about leaving my loved ones” “But this illness reminds me of the important things in life…” Transformation “My love for my family will last.. They will remember me as who I am, what I have done for them in the past, and not what I cannot do today…..”

Decisions on life sustaining treatment “Do-not-resuscitate” orders Forgoing other forms of life sustaining treatment A balance of benefit, burdens and risk Respect the patient’s choice

Advance care planning A discussion between the patient, family and clinical team on how the patient should be treated at the end of life, which may include discussions on ◦ Individual wishes, personal values, and goals for care ◦ Advance refusals of life sustaining treatment ◦ Place of death

Care of the family members During the illness During grief (separate talk on this)

Thank you!