Quality at the End of Life

1. Quality at the End of Life By Dr. Sheila Peace School of Health & Social Welfare The Open University

2. Quality ofLiving and Dying with Jeanne Katz, Moyra Sidell and Carol Komaromy

3. Principles of palliative care Control pain and provide symptom relief Create support system for all concerned Establish a team of carers with good communication between them Provide expert advice Provide emotional, spiritual and practical care for dying person�s family during illness and also bereavement care

4. Policy documents noting needs of older people in re death & dying - A Home Life (Centre for Policy on Ageing 1984) First guidelines pointing out the needs of dying and bereaved residents .

5. Older people dying in residential settings : studies of quality of care Counsel and Care (1995) Shemmings (1996) Sidell and Katz (1994) Small study demonstrating poor quality of care in residential homes Similar findings to above Unpublished pilot study of 4 homes revealing discrepancies in a number of areas including access to palliative care / district nursing, training of staff, and access to equipment.

6. Policy documents noting needs of older people in re death & dying B Better Home Life (Centre for Policy on Ageing 1996) Guidelines for caring for dying and bereaved - little evidence that these percolated through to individual homes .

7. A Better Home Life :Recommendations Announcing a death News of a resident's death should be announced in a dignified and gentle way. It may be best to announce it quietly to individuals or staff groups to begin with but some more public announcement may also so appropriate course. Some people may find this public recognition comforting. It should never be assumed that people with dementia do not understand when someone has died. Some of the following possibilities might be appropriate: a minute's silence at an appropriate time; a photograph or some other personal tribute in a suitable place; opportunity to visit the dead person and pay last respects;

8. A Better Home Life :Recommendations ctd a memorial or thanksgiving service or some other religious or cultural ceremony; lighting a candle; playing a favourite piece of music or reading a poem; a plant, picture or piece of furniture in memory of the person; Plaques should be kept discreet so that the home is not overrun with Memorials From Centre for Policy on Ageing (1996) A Better Home Life, p. 120.

9. Exploring dying in residential settings for older people � OU studies 1995-1997 Death and Dying in Residential and Nursing Homes for Older people: Examining the case for palliative care 1997-2000 Investigating the Training Needs of Residential and Nursing Home Care Staff 2002 Extension Study to develop training materials to final form All funded by the Department of Health

10. Death and Dying in Residential and Nursing homes � OU study 1 Sidell, M., Katz, J., and Komaromy, C. (1997) Death and Dying in Residential and Nursing Homes for Older People: examining the case for palliative care (Report to the Department of Health) Great variation in care provided for dying people in nursing and residential homes in England Carers lack understanding of palliative care Little knowledge of available services

11. Who lives in residential care? In 412 homes, 10,035 residents 3 times more women than men 22% stayed over 5 years 35% between 2 and 5 years

12. Who dies in these settings? 2180 deaths in 412 homes in 1996 Of these deaths, 53% over 85, 14% under 75. Most die during the winter months Just under half die at night (44.3%) 476 residents died after transfer to hospital (mostly from residential homes, due to different status)

13. Key findings: causes of death Results of stage one - survey of 412 homes General deterioration (42%) Acute episode (stroke or pneumonia) 34% Terminal illness 15% Sudden death 10% If I write tsomething here will it appear on the main text?If I write tsomething here will it appear on the main text?

14. Caring for dying residents: challenges 1 Addressing dying residents� needs

15. Caring for dying residents: challenges Addressing dying residents� needs: Recognising physical pain

16. Caring for dying residents: challenges Addressing dying residents� needs: Recognising physical pain Pain assessment and symptom control

17. Caring for dying residents: challenges Addressing dying residents� needs: Recognising physical pain Pain assessment and symptom control Symptoms other than pain

18. Caring for dying residents: challenges 2 Components of good nursing care

19. Caring for dying residents: challenges Components of good nursing care Regular turning

20. Caring for dying residents: challenges Components of good nursing care Regular turning Providing basic comfort to resident

21. Caring for dying residents: challenges Components of good nursing care Regular turning Providing basic comfort to resident Overcoming obstacles

22. Caring for dying residents: challenges Components of good nursing care Regular turning Providing basic comfort to resident Overcoming obstacles Addressing emotional needs

23. Caring for dying residents: challenges Components of good nursing care Regular turning General comfort to residents Overcoming obstacles Addressing emotional needs Addressing other needs

24. Overarching issues in caring for dying residents Knowledge of older people�s needs

25. Overarching issues in caring for dying residents Knowledge of older people�s needs Ethos of home

26. Overarching issues in caring for dying residents Knowledge of older people�s needs Ethos of home Relationship with general practice

27. Overarching issues in caring for dying residents Knowledge of older people�s needs Ethos of home Relationship with general practice Role of community nurses

28. Overarching issues in caring for dying residents Knowledge of older people�s needs Ethos of home Relationship with general practice Role of community nurses Availability of practical support and guidance

29. Overarching issues in caring for dying residents Knowledge of older people�s needs Ethos of home Relationship with general practice Role of community nurses Availability of practical support and guidance Access to training

30. Caring for deceased residents: Knowledge of procedures

31. Caring for deceased residents: Knowledge of procedures Laying out the body

32. Caring for deceased residents: Knowledge of procedures Laying out the body Dealing with relatives

33. Caring for deceased residents: Knowledge of procedures Laying out the body Dealing with relatives Removing the body

34. Caring for deceased residents: Knowledge of procedures Laying out the body Dealing with relatives Removing the body Supporting colleagues � legitimating grief

35. Caring for deceased residents: Knowledge of procedures Laying out the body Dealing with relatives Removing the body Supporting colleagues � legitimating grief Attending funeral / memorial service

36. Caring for surviving residents: The status of death in homes

37. Caring for surviving residents: The status of death in homes Notifying other residents

38. Caring for surviving residents: The status of death in homes Notifying other residents Constraints on responding to residents� needs

39. Caring for surviving residents: The status of death in homes Notifying other residents Constraints on responding to residents� needs Legitimating grief

40. Caring for surviving residents: The status of death in homes Notifying other residents Constraints on responding to residents� needs Legitimating grief Attending funeral / memorial service

41. Investigating Training Needs of Carers : Aims of Study Two Ascertain range of skills and perspectives of carers from different occupational groups who care for dying residents Explore how carers can share skills and acquire new skills in a conducive learning environment Test training materials in a range of nursing and residential homes Develop appropriate and adaptable training programme for carers

42. Policy documents noting needs of older people in re death & dying C Care Homes for Older People : National Minimum Standards (Department of Health 2001) Developed by Centre for Policy on Ageing following both two versions of Home Life. .

43. Care homes for older people: National Minimum Standards (Department of Health 2001) OUTCOMEService users are assured that at the time of their death, staff will treat them and their family with care, sensitivity and respect.

44. Care homes for older people: National Minimum Standards (Department of Health 2001) OUTCOMEService users are assured that at the time of their death, staff will treat them and their family with care, sensitivity and respect. 11.1 Care and comfort are given to service users who are dying, their death is handled with dignity and propriety, and their spiritual needs, rites and functions observed.

45. Care homes for older people: National Minimum Standards (Department of Health 2001) OUTCOMEService users are assured that at the time of their death, staff will treat them and their family with care, sensitivity and respect. 11.1 Care and comfort are given to service users who are dying, their death is handled with dignity and propriety, and their spiritual needs, rites and functions observed. 11.2 Care staff make every effort to ensure that the service user receives appropriate attention and pain relief

46. Care homes for older people: National Minimum Standards (Department of Health 2001) OUTCOMEService users are assured that at the time of their death, staff will treat them and their family with care, sensitivity and respect. 11.1 Care and comfort are given to service users who are dying, their death is handled with dignity and propriety, and their spiritual needs, rites and functions observed. 11.2 Care staff make every effort to ensure that the service user receives appropriate attention and pain relief 11.3The service user�s wishes concerning terminal care and arrangements after death are discussed and carried out

47. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.4 The service user's family and friends are involved (if that is what the service user wants) in planning for and dealing with increasing infirmity, terminal illness and death.

48. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.4 The service user's family and friends are involved (if that is what the service user wants) in planning for and dealing with increasing infirmity, terminal illness and death. 11.5 the privacy and dignity of the service user who is dying are maintained at all times. .

49. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.4 The service user's family and friends are involved (if that is what the service user wants) in planning for and dealing with increasing infirmity, terminal illness and death. 11.5 the privacy and dignity of the service user who is dying are maintained at all times. 11.6 Service users are able to spend their final days in their own rooms, surrounded by their personal belongings, unless there are strong medical reasons to prevent this.

50. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.7 The registered person ensures that staff and service users who wish to offer comfort to a service user who is dying are enabled and supported to do so.

51. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.7 The registered person ensures that staff and service users who wish to offer comfort to a service user who is dying are enabled and supported to do so. 11.8 Palliative care, practical assistance and advice, and bereavement counselling are provided by trained professionals/ specialist agencies if the service user wishes.

52. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.7 The registered person ensures that staff and service users who wish to offer comfort to a service user who is dying are enabled and supported to do so. 11.8 Palliative care, practical assistance and advice, and bereavement counselling are provided by trained professionals/ specialist agencies if the service user wishes. 11.9 The changing needs of service users with deteriorating conditions or dementia - for personal support or technical aids - are reviewed and met swiftly to ensure the individual retains maximum control.

53. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.10 Relatives and friends of a service user who is dying are able to say with him/her, unless the service user makes it clear that he or she does not want them to, for as long as they wish. DoH (2001) Care Homes for Older People, National Minimum Standards, p. 13.

54. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.10 Relatives and friends of a service user who is dying are able to say with him/her, unless the service user makes it clear that he or she does not want them to, for as long as they wish. 11.11 the body of a service user who has died is handled with dignity, and time is allowed for family and friends to pay their respects. DoH (2001) Care Homes for Older People, National Minimum Standards, p. 13.

55. Care homes for older people: National Minimum Standards (Department of Health 2001) 11.10 Relatives and friends of a service user who is dying are able to say with him/her, unless the service user makes it clear that he or she does not want them to, for as long as they wish. 11.11 the body of a service user who has died is handled with dignity, and time is allowed for family and friends to pay their respects. 11.12 Policies and procedures for handling dying and death are in place and observed by staff. DoH (2001) Care Homes for Older People, National Minimum Standards, p. 13.

56. Policy documents noting needs of older people in re death & dying D National Service Frame-work for Older People (2001) Dignity in end of life care Supportive and palliative care aims to promote both physical and psycho-social well being. .

57. National Service Framework for Older People DoH 2001 Supportive and palliative care aims to promote both physical and psychological social well-being. All those providing health and social care, who have contact with older people with chronic conditions or who are approaching the end of their lives may need to provide supportive and palliative care" (DoH, 2001, p. 25)

58. Key IssuesRelationshipsResources

59. Learning from the �The Last Refuge� by Professor Peter Townsend 1962 � Generally, however, a death was hushed up and the body removed swiftly and silently. No doubt staff were anxious to avoid giving cause for anguish but they failed to realize that by their attitude they provoked insecurity. Many of the old people were aware that their lives were drawing to a close. Some were fearful, it is true, but most were reconciled to the idea or event welcomed it. The death of others disturbed them less than the concealment of it. And the way death was treated was perhaps a crucial test of the quality of the relationship between staff and residents. Dishonesty in this most serious of matters created distrust over minor affairs. And to avoid the rituals observed in the ordinary community had other consequences. Prompt removal of the body was not only, old people felt, the final indignity which a resident had suffered but it gave no chance to those who were left of paying their last respects to someone who had lived amongst them, however remotely, and of thereby giving a little more strength, dignity and feeling to the slender relationships between those who continued to share the life of a ward. Perhaps these observations have less force when considering some hospital environments. But for old people in residential institutions they seem to be of considerable importance( 1962:96) � Generally, however, a death was hushed up and the body removed swiftly and silently. No doubt staff were anxious to avoid giving cause for anguish but they failed to realize that by their attitude they provoked insecurity. Many of the old people were aware that their lives were drawing to a close. Some were fearful, it is true, but most were reconciled to the idea or event welcomed it. The death of others disturbed them less than the concealment of it. And the way death was treated was perhaps a crucial test of the quality of the relationship between staff and residents. Dishonesty in this most serious of matters created distrust over minor affairs. And to avoid the rituals observed in the ordinary community had other consequences. Prompt removal of the body was not only, old people felt, the final indignity which a resident had suffered but it gave no chance to those who were left of paying their last respects to someone who had lived amongst them, however remotely, and of thereby giving a little more strength, dignity and feeling to the slender relationships between those who continued to share the life of a ward. Perhaps these observations have less force when considering some hospital environments. But for old people in residential institutions they seem to be of considerable importance( 1962:96)

60.   Key References Hockley, J. and Clark, D. (eds.) (2002) Palliative Care in Residential Care. Open University Press, Buckingham. Katz, J.S. and Peace, S. (eds.) (2003) End of Life in Care Homes: A Palliative Care Approach Oxford University Press, Oxford. Macmillan Cancer Relief (2004)Foundations of Palliative Care: A Programme of Facilitated Learning for Care Homes Staff, Macmillan Cancer Relief, London ( Katz, Komaromy, Sidell)