1. Symptom control at the end of life Dr Iain Lawrie Specialist Registrar in Palliative Medicine

2. Objectives  Care of the dying: Why is it important?  Palliative Care  What is palliative care?  The principles of palliative care  Who provides palliative care?  The last 24 hours: What is a ‘good death’?  How can we achieve a ‘good death’?

3. Care of the Dying: Why is it important?  Death affects us all  A ‘good death’ is a fundamental human right  Hospices established in response to the poor quality of care of the dying patient  ‘Bad deaths’ are highly publicised  National policies/guidelines

4. Care of the dying: Why does it concern doctors?  ‘When both the consultant and senior nurse in a ward team showed caring characteristics the dying patient had more contact time and more attention from qualified nurses and received an acceptable standard of care. Teams in which the consultant (and senior nurse) withdrew from the patient had a corresponding deficit in patient care.’ Mills 1994

5. What is Palliative Care?

6. Palliative Care is… “…an approach that improves the quality of life for patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identified and impeccable assessment and treatment of pain and other problems, physical, psychological, and spiritual.’’ WHO 2002

7. Who provides Palliative Care?  ‘It is the right of every person with a life threatening illness to receive appropriate palliative care wherever they are’  ‘It is the responsibility of every health care professional to practise the palliative care approach, and to call in specialist palliative care colleagues if the need arises…whatever the illness…’ National Council for Hospice and Specialist Palliative Care 2002

8. When should I refer to the Palliative Care Team? Advanced, progressive disease  Uncontrolled/complicated symptoms  Uncontrolled anxiety or depression  Complex emotional needs involving children, family or carers  Complex issues relating to physical and human environment (i.e. home, finances etc)  Unresolved issues around self worth, loss of meaning and hope (may include euthanasia issues)

9. Specialist Palliative Care Services

10. The last 24 hours  What are we aiming to achieve in the last 24 hours?  …a ‘good death’

11. What is a ‘good death’?

12. Factors considered important at the end of life JAMA 2000; 284(19): 2476-82  symptom management  preparation for death  achieving a sense of completion  decisions about treatment preferences  being treated as a ‘whole person’  being mentally aware rated strongly by patients (92%)

13. Factors considered important at the end of life  choice and control over where death occurs (at home or elsewhere)  control over who is present and who shares the end  to be able to leave when it is time to go, and not to have life prolonged pointlessly

14. A ‘good death’ is…  appropriate for the individual patient  their good death, not ours!  “…we will do all we can not only to help you die peacefully, but to live until you die.” Dame Cicely Saunders

15. The Challenge  To provide end of life care tailored to the individual, for patients in the NHS, whilst fostering autonomy, independence and control.

16. How can we achieve a ‘good death’?  Good communication is central to good end of life care  Patients  Family and friends  Other professionals

17. How can we achieve a ‘good death’?  Recognize that death is approaching  Continue multi-professional approach  Reassess patient and relatives’ needs  Symptom management  Ongoing psychosocial and spiritual support  Involve patient, family & friends in decision-making  Care in different settings  Ethical questions include CPR/DNAR, futility, withholding and withdrawing treatment, etc

18. Diagnosing dying In patients dying of cancer: The patient:  becomes bed-bound  is semi-comatose  is able to take only sips of water  is no longer able to take oral drugs

19. Symptom management The aim of all treatment is to control the symptoms which are distressing the patient Discontinue:  all other medication, investigations and observations which do not fulfill this aim, and explain rationale to patient/ family

20. Withdrawing & withholding treatment  investigations  food  fluids  NG tubes / IV lines  medications  communication  ethical considerations

21. To stop … or not to stop?  antibiotics  analgesics  PPIs  steroids  antihypertensives  statins  aspirin  antidepressants  anticancer treatment  laxatives

22. Symptoms present in last days of life Asthenia (debility) Anorexia Dry mouth Dyspnoea Confusion Noisy respiratory tract secretions Pain Restlessness / agitation Nausea 82% 80% 70% 17 - 47% 56% 46% 43% 14%

23. Pain 50% develop a new pain:  loss of pain control due to route of administration  urinary retention/constipation  musculoskeletal  bedsores  oral candidiasis  pathological fracture

24. Agitation / restlessness  Exclude physical causes before diagnosing terminal agitation/ anguish  ?Urinary retention/constipation  Diamorphine only effective for agitation due to opioid-sensitive pain : may exacerbate agitation due to other causes  Consider sedatives, restful music of patient’s choice  Explanation

25. Retained oropharyngeal secretions ‘Death rattle’  Patient usually oblivious  Distressing to family, friends & staff  Management:  Early intervention  Positioning  Suction  Subcutaneous antimuscarininc drugs: hyoscine hydrobromide; hyoscine butylbromide, glycopyrronium bromide

26. Dry mouth  Dry mouth leads to speech and swallowing difficulties, and halitosis  Contributory causes include drugs, mouth breathing, candidiasis, dehydration  Meticulous mouth care the main stay of treatment  Offer sips of cold drinks  Treat candidiasis if feasible  Parenteral fluids rarely required

27. Anticipating problems Ensure adequate prn medication via appropriate route(s) for:  pain  agitation and anxiety  convulsions  oropharyngeal secretions  nausea

28. Practical issues  environment  visitors  relatives staying  food & fluids; toilets & showers  after death

29. Key Messages  Whilst affirming life, regard death as a natural process not a medical failure  Senior doctors’ attitudes to dying patients influences unit’s approach to terminal care  Actively diagnose dying  A ‘good death’ will vary for each patient  Good communication is essential  Attention to detail can make all the difference

30. Key Messages  Palliative Care exists but / and …  All doctors can use the palliative care approach  We die as we have lived …  quality of care in the last days and hours of life is largely dependent upon the preceding care received

31. Resources  British National Formulary (palliative care section)  Yorkshire Cancer Network Symptom Management guidelines: www.yorkshire-cancer-net.org.uk  Care of the Dying; the last hours or days of life. BMJ 2003;326:30-34  Is there such a thing as a good death? Palliative Medicine 2004;18:404-408  Liverpool Integrated Care Pathway for the Dying  Historical and cultural variants on the good death. BMJ 2003;327:218-220  Caring for people of different faiths. 3 rd edition. Julia Neuberger, Radcliffe 2004