DSCIDC Dementia and End of Life Seminar 8th May 2009

1. This presentation arises from the joint Irish Hospice Foundation/HSE Extending Access Study and the 2008 Report on integrating palliative care into disease management frameworks for patients with non-malignant diseasesThis presentation arises from the joint Irish Hospice Foundation/HSE Extending Access Study and the 2008 Report on integrating palliative care into disease management frameworks for patients with non-malignant diseases

2. DSCIDC Dementia and End of Life Seminar8th May 2009 Integrating Palliative Care within Dementia Services Based on the findings of 2007/08 Study on Extending Access to Palliative Care Angela Edghill, Irish Hospice Foundation The focus is on the findings of the study and how and where we go from here. I will introduce the main findings of the study and my colleague, Marie Lynch, will describe the next steps in making the recommendations a reality.The focus is on the findings of the study and how and where we go from here. I will introduce the main findings of the study and my colleague, Marie Lynch, will describe the next steps in making the recommendations a reality.

3. Context of Study To examine the palliative care needs of people with life-limiting diseases other than cancer Initial focus on COPD, dementia and heart failure Identify how the palliative care model can be extended to these patient groups within Irish health care The terms of reference or context of the study was To examine the palliative care needs of people with life-limiting diseases other than cancer Initial focus on COPD, dementia and heart failure Identify how the palliative care model can be extended to these patient groups within Irish health care The terms of reference or context of the study was To examine the palliative care needs of people with life-limiting diseases other than cancer Initial focus on COPD, dementia and heart failure Identify how the palliative care model can be extended to these patient groups within Irish health care

4. Policy context for palliative care and non-malignant diseases DOHC 2001 report on palliative care needs of patients with non-malignant disease �The promotion of the palliative care approach is appropriate for all non-cancer patients. A subset of patients with multiple medical problems or complex palliative care needs will benefit from Specialist Palliative Care.� Report of the National Advisory Committee on Palliative Care 2001 The policy context for the study is to be found in the 2001 DOHC report on palliative care which recommends integration of all levels of palliative care for patients with diseases other than cancer. To date, other policy documents on life-limiting diseases do not reference the need for palliative careThe policy context for the study is to be found in the 2001 DOHC report on palliative care which recommends integration of all levels of palliative care for patients with diseases other than cancer. To date, other policy documents on life-limiting diseases do not reference the need for palliative care

5. What is palliative care? Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other symptoms that may be physical, psychosocial and spiritual. (WHO) The definition of palliative care will be familiar to many of you. Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other symptoms that may be physical, psychosocial and spiritual. (WHO) The definition of palliative care will be familiar to many of you. Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other symptoms that may be physical, psychosocial and spiritual. (WHO)

6. Palliative Care Principles Focus on quality of life Maintaining good symptom control A holistic approach which takes into account the person�s life experience and current situation Care that encompasses the patient and those who matter to them Open and sensitive communication with patients, carers and professional colleagues.

7. Structure Three ascending levels of specialisation: Level 1 � Palliative Care Approach Informed by the principles of palliative care, aims to promote both physical and psychosocial well-being. A vital and integral part of all clinical practice, in hospitals or the community, whatever the illness or its stage Level 2 � General Palliative Care Intermediate level practised by health care professionals with additional training and experience in palliative care . Level 3 � Specialist Palliative Care (SPC) Core activity is palliative care by an inter-disciplinary team under the direction of a consultant in palliative medicine. Available in primary care, acute general hospitals and hospices (NACPC) (Levels 1 & 2 may be called non-specialist palliative care) The Palliative care approach is an integral part of all clinical practice and aims to promote both physical and psychosocial wellbeing Level 2 palliative care is delivered by healthcare professionals with additional palliative care training The majority of palliative care is delivered at levels 1 and 2The Palliative care approach is an integral part of all clinical practice and aims to promote both physical and psychosocial wellbeing Level 2 palliative care is delivered by healthcare professionals with additional palliative care training The majority of palliative care is delivered at levels 1 and 2

8. Context for palliative care and dementia Palliative care in dementia is of singular importance (Vision for Change 2006 DoHC) Dementia care should incorporate palliative care from the time of diagnosis until death. (NICE UK 2007) Principles of person-centred dementia care mirror broad principles of palliative care. (Hughes (2005), McCarron (2008)) Internationally there has been recognition of the need for palliative care in the management of heart failure patients. It has been a feature of UK health policy since 2000 and NICE guidelines reference this need. Equally the Heart Failure Society of America reference this need and the European Society of Cardiology recommend consideration of palliative treatment within the heart failure services. Their website for patients has a section on planning for end of life.Internationally there has been recognition of the need for palliative care in the management of heart failure patients. It has been a feature of UK health policy since 2000 and NICE guidelines reference this need. Equally the Heart Failure Society of America reference this need and the European Society of Cardiology recommend consideration of palliative treatment within the heart failure services. Their website for patients has a section on planning for end of life.

9. Rationale for palliative care for people with dementia 38,000 people in Ireland have diagnosis of dementia � expected to rise to 70,000 by 2026. People with dementia and families may face complex decisions on care needs, ethical considerations and advance planning Co-morbidities � cardiac/respiratory, infections etc may require palliative intervention. Final phase is challenging and difficult to identify. Poor pain control and inappropriate treatment at end stage where no palliative intervention. You are all familiar with the size of the patient population and symptom burden for people with heart failure. National and international literature suggests that such patients may have palliative care throughout their care pathway. You are all familiar with the size of the patient population and symptom burden for people with heart failure. National and international literature suggests that such patients may have palliative care throughout their care pathway.

10. The challenges �for dementia services Delivering on Levels 1 and 2 palliative care Need for additional training and support Recognising the terminal phase of dementia Dying from dementia/dying with dementia Timing of palliative care When to refer to SPC

11. Where palliative care approach has not been taken for people with dementia� Studies show Antibiotics were inappropriately used in the last days of life and Analgesics less frequently prescribed than for the general population

12. Collaboration Joint approach by dementia care team and SPC can address reservations about introducing palliative care Developing mutual understanding and respect of the skills of each team can be first step Collaboration does not always require extra resources (Johnson and Haughton 2006) Collaboration is the key.Collaboration is the key.

13. Palliative Care and DEMENTIA Palliative Care required for Symptom management, particularly pain Ethical issues surrounding provision of personal care and invasive procedures Bereavement (including anticipatory grief) for all Advanced Directives/Power of Attorney (Abbey 2006) Enabling dying with dignity and in place of patient�s choosing Palliative care should be available from time of diagnosis until death (NICE UK)Introducing palliative care in dementia pathway is particularly challenging due to the duration of the disease and the progressive inability of individual to communicate and participate in decision making about their care

14. Non-specialist palliative care has specific role in.. Pain, symptom management, anxiety and depression Management of issues presenting relating personal care including nutrition, hydration and hygiene. Increasing patients and family members understanding of the disease trajectory Support relating to advance planning and future treatment decisions, Community and home care support to address increasing disability Bereavement support throughout the disease trajectory Prompt access to SPC as required

15. Timing of palliative care in dementia trajectory

16. Possible �triggers� for SPC intervention Acute medical event leading to increase in intensity of symptoms: e.g. pain, dyspnoea, terminal agitation that cannot be managed by referring team Assistance with introduction of advance directives or treatment decisions

17. Consultation processControversy Timing Eligibility Criteria Levels of SPC access There were some areas which caused controversy Tensions between curative and palliative approaches � the fear that people are being given up on When should palliative care � and particularly SPC � be introduced? What criteria should be used to refer to SPC? Will there be access to SPC services if patients need them?There were some areas which caused controversy Tensions between curative and palliative approaches � the fear that people are being given up on When should palliative care � and particularly SPC � be introduced? What criteria should be used to refer to SPC? Will there be access to SPC services if patients need them?

18. Consultation process�Consensus�.. Recognition of need Symptom burden Need for comprehensive MDT dementia services Implementation plan What there is consensus on Pallaitive care needs The symptom burden The need for comprehensive MDT HF services The need for an implementation plan to make the changes required. What there is consensus on Pallaitive care needs The symptom burden The need for comprehensive MDT HF services The need for an implementation plan to make the changes required.

19. The realities�.. Clarity required on the role of palliative care in dementia More education and support More staffing More leadership More policy Not the only priority! What is needed More clarity on role of pc in hf Education and support Staffing Leadership to drive initiatives Policy on pc for hf and other patients PC not the only priority for hard-pressed servicesWhat is needed More clarity on role of pc in hf Education and support Staffing Leadership to drive initiatives Policy on pc for hf and other patients PC not the only priority for hard-pressed services

20. The realities��. The majority of palliative care needs can be addressed from within dementia services or provided by - GPs Community Nursing Staff Allied Health Professionals Social Workers Care Staff

21. Realities � some progress! Level 1 and Level 2 Palliative care Intellectual disabilities services Dementia-specific services - some staff have additional training in palliative care While there is little evidence in Ireland of palliative care as part of non-malignant disease management frameworks there has been some progress � While there is little evidence in Ireland of palliative care as part of non-malignant disease management frameworks there has been some progress �

22. Views of Dementia teams re referrals to SPC Want to remain involved in the ongoing care of the patient Referral prompted following assessment by consultant Support in management of symptoms where they have become intractable Assistance with advance care planning, certain treatment decisions, and ethical issues

23. What happens next�.. Forum in March: �Delivering on Palliative Care for All� Links with other life- limiting disease groups Education � formal and informal Submission to be sent to HSE ETR Information website portal; Quarterly Communiqu� Education Seminar in autumn A summary booklet on the key findings. 4. Dissemination and Awareness 5. Enhance service responsesfrom Disease Management Framework 3 Action/Exploratory Research Projects

24. 3 Action Research Projects � Establishing Palliative Care within Disease Management Frameworks Dementia Heart Failure Advanced Respiratory Disease Each project will be two year duration Part time project officer appointed to each project. These 2 year projects cover Dementia Heart Failure COPD and advanced respiratory disease These 2 year projects cover Dementia Heart Failure COPD and advanced respiratory disease

25. Partnership approach Dementia project co-funded by the Alzheimer Society of Ireland All projects have links/support from HSE PCCC and NHO. Balance of funding from Irish Hospice Foundation and Baxter Foundation

26. Site Selection Process Locations to be decided following invitation for expressions of interest in April � closing date 11th May. Community residential units and SPC will be key partners in Dementia research Local management team to be established to oversee the project

27. Outcomes Clarity regarding nature of and timing for level 1 & 2 palliative interventions for people with dementia Identify how these interventions can be included in routine assessment and care of people with dementia Development of guidelines for introduction of palliative interventions and referral to specialist palliative care Development of education materials to assist key personnel in delivering palliative interventions

28. Palliative Care for All Success depends on collaboration!

29. Palliative Care for All Thank you�. Questions? www.hospice-foundation.ie  angela.edghill@hospice-foundation.ie