End of life care Barbro Norrström MD, Senior Consultant in Oncology Diploma in Palliative Medicine

1. The INCTR First Symposium on Pediatric & Adolescent oncology Addis Ababa, Ethiopia January 18 – 21 2011 End of life care Barbro Norrström MD, Senior Consultant in Oncology Diploma in Palliative Medicine ASIH Långbro Park, (Advanced Palliative Home & Hospice Care Stockholm, Sweden) 21st of January 2011

2. PALLIATIVE CARE is a HUMAN RIGHT • Early identification and impeccable assessment and treatment of physical, psychosocial and spiritual problems • AVOID Suffering • Palliative care is an essential part of cancer control • Palliative care neither hastens nor postpones death • ref http://www.who.int/cancer/palliative/en/

3. What end of life care involves and when it starts • Support when death is approaching. • To be as comfortable as possible by relieving pain and other distressing symptoms. • ”Cure is rare but comfort is always there” (ref KEPCA) • Multiprofessional approach

4. EoL Care in children vs adults • Cancer • Non cancer • Differencies in disease trajectory • Differencies in prognostication EoL • Communication – sometimes by proxy • Barriers in pediatric EOL Care by the professionals

5. Trust and supportis basic

6. TRANSITIONS at EoL • Week by week • Day by day • Hour by hour • Minute by minute • Assess symptoms regulary • Mechanism based treatment • Ref ; Twycross; ”Rule of threes”

7. Care and support to the dying patient • Physical, emotional and spiritual comfort – respect for beliefs • Support patient and family and find out their wishes • Family involved in the physical, emotional and spiritual care • Support good communication • ”Prepare for the worst & hope for the best” • Care should be dignified

8. Breaking Bad News in EoL • Aquire all information possible • Plan & Set the context • Warning ”shot” • Find out how much is known & what is wanted to be known • Respond to patient´s & family´s reactions • Repeat & check if understood correctly

9. Breaking Bad News cont • More information asked for? • Concerns- emotions? • Follow up & immediate plan • Next step - supportive and reassuring of follow up • Make certain of knowledge of how to access professional support

10. Signs of EOL approaching • Vital signs deteriorating • Surroundings no longer of interest • Loss of appetite and fluid intake • Decreased interaction with others • Periods of sleep increases • Withdrawal

11. End of life care - symptoms & signs • Progressive weakness • Disorientated now and then or reduced cognition • In need of support with care • Bedridden • Exclude reversible cause- ie medication, hypercalcemia, infection

12. Most common symptoms in the last hours of life • Breathlessness • Noisy,irregular breathing • Agitation/ restlessness • Uncontrolled pain • Myoclonic jerks • Nausea, vomiting

13. Breathlessness • Dyspnoe • If possible treat reversible cause • Anxiety • Opioids if available • Oxygen if hypoxic if available • Bensodiazepines if available • Do not leave the patient

14. ”Death Rattle” or gurgling sounds • Changes in breathing • Irregular breathing; Cheyne Stoke breathing • Noisy breathing; gurgling or rattling sounds • These gurgling sounds can be upsetting for next of kin

15. Confusion & Disturbed Sleep • Drowsiness • Disorientated • Hallucinating/Agitation • Sleep disturbances • Assess and review medical treatment • Worrying for family

16. Controlling pain • 75 % of cancer patients experience pain • Not everyone dying of cancer has pain • Assess pain control and mechanism of pain • Other routes for control of pain than oral? • Myoclonic jerks

17. Progressive weakness • Physical changes • Cachexia • Muscle atrophia • Bed bound • Development of pressure sores • Feeling of weakness

18. Loss of bladder or bowel control • Darkened urine or decreased amount of urine • The dying person may lose control of their bladder and bowel • Can be worrying for next of kin

19. Decreased need of nutrition and fluid intake & Nausea & Vomiting • If nausea & vomiting-mechanism? • Difficulty in swallowing • Not wanting to eat or drink at all • Patients rarely worry about not eating/drinking • Family do often worry (do NOT force an argument!) • To be comfortable- avoid dry mouth

20. Skin becomes cool to the touch • Cold feet, hands, arms and legs • Peripheral cirkulation impaired • Changes in colouring of skin

21. Useful drugs, if available • Opioids • Bensodiazepines • Anticolinergics • Sedatives, neuroleptics • Steroids • NSAIDs • Diuretics

22. Routes for medication in end of lifecare • Subcutanous- syringe driver (if available) • Rectal • Topical • Intravenous (if a line) • Buccal • Avoid intramuscular

23. Asses patient & families needs • Spiritual & psychological issues • Focus on patients imminent needs • Review medication • Information to family of symptoms to expect • Maintain patients dignity • LCP- Liverpool care pathway

24. Liverpool Care Pathway for the Dying Patient (LCP) • The LCP is an integrated care pathway,used at the bedside to drive up sustained quality of the dying in the last hours and days of life. • "Care of the Dying should become a quality performance indicator in support of the governance and performance management framework of all organisations at executive level"John Ellershaw, Clinical Lead - LCP, Professor of Palliative Medicine, University of Liverpool,Director MCPCIL.

25. What are the signs that the patient has died? • Pulse and breathing do not exist. • No response to touch or when spoken to to • No eye movement. Eyelids may be open. Lack of reflex and dilated pupils • Relaxed jaw and slightly open mouth • Bladder and bowel might be released

26. Bereavement • Counselling • Respond to grief reactions • Help family accept death • Supportive • Be open to communication • Follow-up with family after their loss

27. Medication • Breakthrough pain-> 1/6th of the oral opioid dose; If parenteral-> 1/2 or 1/3 of total po dose • If new pain ; assess- mechanism. • Nociceptiv, (opioids, if colic; Hyoscine Butylbromide) • Neuropathic,(tricyclic, gabapentin) • Inflammatory component (NSAID´s, steroids), • Existential (”Total pain – Dame Cisely Saunders”) Anxiolytics ( Midazolam) Neuroleptics (Haloperidol)

28. Medication continued • Anxiety, agitation: Bensodiazepines ,(Parenteralt Midazolam ) Neuroleptics parenteral; • Breathlessness:opioids, bensodiazepines, oxygen • If rattling, gurgles;Hyoscin Hydrobromide, Hyoscin Butylbromide • Nausea/Vomiting Metoclopramid, Steroids, Hyoscin Butylbromide, Haloperidol

29. Take home message • Everyone has a right to palliative care • Avoid suffering, optimize symptom control • Respect and support in end of life care • Assess interventions • Stop medication not needed • Multiprofessional approach

30. Useful weblinks…. • http://www.nhs.uk/Planners/end-of- life-care/Pages/End-of-life-care.aspx • http://www.ipcrc.net/ http://www.palliativemed.org/ • http://www.liv.ac.uk/mcpcil/index.htm • Children`s Palliative Care in Africa ed Justin Amery, Oxford University Press • Perspectives on Palliative Care For Children and Young People – a global discourse- ed R Pfund & S Fowler-Kerry • EAPC- Pediatric Palliative Care

31. Thank you for listening! Questions?