Grainne McGettrick Policy and Research Manager Dementia Palliative Care: Context Setting/Background. PCA Conference 14 September 2012
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1 Grainne McGettrick Policy and Research Manager Dementia Palliative Care: Context Setting/Background PCA Conference 14 September 2012
2 Dementia Care in Ireland Lacking policy attention Underdeveloped services Limited investment People with dementia invisible and voiceless (42,000 people/50,000 carers) Dementia discourse
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4 DPC Projects in Ireland Action research project CMHSOP Advanced care planning project, St. Vincent s Hospital, Athy Research project, The Alzheimer Society of Ireland
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7 Aims of the Feasibility Study Building Consensus Signposting Work
8 The National Dementia Strategy 2013
9 DPC: The Challenges The nature of the disease/condition When does the PC approach start? What do we call this?
10 How you relate to us has a big impact...you restore our personhood, and give us a sense of being needed and valued. Give us reassurance, hugs, support, a meaning in life. Value us for what we can still do and be, and make sure we retain social networks. We're still here, in emotion and spirit, if only you could find us. Christine Bryden
11 Further information The Alzheimer Society of Ireland The Irish Hospice Foundations My journey into Dementia Palliative Care. Michele Hardiman RPN,RGN,Hdip,MA(Mgt) Clare Mental Health Service.
12 Tripping into dementia palliative care
13 A Journey of learning for everyone.
14 Sowing the seeds of reflective practice
15 Values and Beliefs What is important? What is the right thing to do? What do we have to do?
16 Psychological Needs (Kitwood) Attachment Hughes,J (2005) Palliative Care in Severe Dementia WHO definition of Palliative Care Support to Person and Family Aspects of PC Approach Importance of sensitive communication Comfort Symptom Control Quality of Life Identity Integration of psychological, social + spiritual aspects Whole Person Approach Occupation Affirmation of Life Respect for Autonomy Inclusion Support to Person & Family Care of Person & Family
17 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) (Palliative Care for All 20008)
18 Non-specialist palliative care has specific role in.. Symptom Management Personal Care dignity/privacy issues Physical Care - Nutrition Psychological Care Bereavement Care End of Life Care Prompt access to SPC as required
19 A potential Dementia Palliative Care Model Symptom Management Personal Care Physical Care Psychological Care Spiritual Care Bereavement End of Life Agitation Depression Confusion Anxiety Aggression Pain Medication Management Symptoms relating to Parkinson s Stroke Arthritis COPD Cancer Dignity Privacy Hygiene, Comfort, Safety Skin Integrity Nutrition Hydration Swallowing Elimination Sleep Mobility Activity Diagnosis Personal profile Choice Legal Security Autonomy Relationships Religion Culture Quality of Life Family support Education Care Plan SPC ACP
20 Rules and Regulations! & Ethical Dilemmas HIQA standards HACCP regulations Infection Control Policy Approved Centre Regulations (MHC)
21 Morals are messy. Ethics are everywhere. (Hughes,J.,Baldwin C. 2006) Moral theories give us ways of understanding what might be a good thing or what might be a bad thing. They provide a framework for ethical decisions we have to make.
22 Dilemmas I am caring for a person with dementia who has to have thickened fluids; this was ordered by the Speech and Language therapist as she is a high choking risk. She dislikes the thickened fluids so much she spits the drinks out. I went back to the SLT but she says the risks of choking are too high. It s hard to know what to do
23 Enabling a Palliative Care Approach Practice Development Examining our own Values and Beliefs Confidence in the tricky conversations Dealing with the Organisational issues
24 It is the small changes that eventually make a big difference to the persons life..i can now make changes at ward level". (Participant in Action Research)
25 Planning for the Future Dementia Specific Unit Project funded by Irish Hospice Foundation Cecelia Hayden CNS Dementia Muriel Parke CNS Palliative Care
26
27
28 I am not afraid to die But I don t want to be in pain
29 What are the advantages of end of life care discussions? Highlights the need to discuss end of life care and challenge perceptions about people with dementia Raises awareness for the need to recognise and document informal conversation or special moments with people with dementia Where there are a number of advanced medical problems, including dementia, a palliative approach to care is often more beneficial than invasive procedures Note discussions are around preferences and wishes are not a legal agreement.
30 STEP 1 Project team Discussion & Planning Overview of literature Case note reviews Staff Questionnaire Information sessions with staff
31 However! While nurses report finding it easy to initiate conversation around end of life with relative there was little documented evidence in care plans that any conversation took place!
32 STEP 2 Action Plan Developed recognising residents special moments Staff education Adapting Residents care plan Update local end of life policy End of life module on national dementia training programme Final Journeys Training Symptom Management guidelines End of Life Domain Three monthly review option Visual prompt cards
33 Care Plan Page The healthcare team can work with the person with dementia from initial meeting to introduce the need to discuss their preferences and wishes around end of life care Opportunity to discuss care options and alleviate decision making concerns. Worded in a way that encourages discussion about end of life care Provides means to document both formal and informal discussions around end of life care
34 It is really important to us that we care for you in the way that you want to be cared for. We want to make sure that any decisions about your end of life care or treatment both now and in the future are based on your values, wishes and preferences. We want you to remain as well as possible for as long as possible but have you ever thought about what would be most important to you if you became seriously ill while you are in St Vincent s?.. If the doctor and staff felt that acute treatment in a general hospital would not be of benefit to you at that particular time, what would you prefer to do? Remain in St Vincent s hospital for treatment and symptom management. Yes No Transfer for more advanced acute medical treatment to Accident and Emergency department. Yes No ALL DECISIONS ABOUT YOUR ONGOING MEDICAL CARE WILL BE MADE IN CONSULTATION WITH YOU AND YOUR DOCTOR, AND IN YOUR BEST INTEREST. You might find this conversation difficult, in which case could I ask you to think about your wishes and preferences around future end of life care and I will come back to you again on.. Nurse s Signature... Date.. Are there any documents we should be aware of in relation to your end of life care e.g. Enduring Power of Attorney (EPA)/ Ward of Court?... Ensure relevant information is documented and updated in residents medical notes
35 Can you tell me what you understand about your illness and this particular stage of it?.. What do you think would be most important to you when you are nearing end of life? Eg; Have you ever thought of where you would like to be? Who would you like to have with you?. Would you like to talk about any worries or fears that you may have about death and dying?..... Any preferences/wishes for after death?.... Wish to be Cremated: Yes No Have you shared any of this information with your family, friend or any other person? Yes No With. Relationship... Would you like to share this information with your other relatives? Yes No We would like to talk with you every three months to make sure we continue to know what your values, wishes and preferences are around your end of life care We may speak to you sooner if there is any change in your condition Information obtained from... Relationship.. Care Plan Commenced: No Yes Date.. Palliative Care Plan: No Yes Date...
36 Visual Prompt
37 Visual Prompt
38 Symptom Management Develop guidelines for staff to ensure symptoms at end stage dementia are addressed effectively, thereby optimising quality of life for people with dementia as they enter the dying phase of their illness Encourages nursing and medical staff to anticipate symptoms that may occur at end of life and prescribe accordingly
39 Symptom Management Guidelines on management and dosing in symptoms likely to occur nearing end of life Symptoms covered include Pain, nausea and vomiting, fever, excess secretions, convulsions, restless and agitation. GP/ Medical Officer/ Palliative Care advice to be sought when needed
40 Medication Form Dose Indications/Disadvantages Paracetamol Suppositories / PO Tablets / Dispersible500mg (max 1g per dose) Max 4g per 24 hours 1st line PO, PR administration in patients with dementia may be misinterpreted as assault causing distress and/or resistance. Diclofenac/ NSAID PO/ suppositories 25mg,50mg, 100mg Max 150mg per 24 hour in divided doses 1st line PO, PR administration in patient with dementia may be misinterpreted as assault causing distress and/or resistance. Caution if renal impairment or peptic ulcer disease. However even if a patient has renal impairment, if the patient is imminently dying and does not have opioid responsive pain, a NSAID may be required for quality of life. Consider PPI Oramorph PO solution 1.25mg 2.5mg Starting dose/4hrly PRN Side effects nausea, vomiting, constipation, opioid toxicity. May need to start regular anti-emetic. Suggest PRN antiemetic Oxycodone (Oxynorm) PO solution/ tablet Starting dose 1 2mg in opioid naive 1.5 times stronger than morphone sulphate. Similar side effects including opioid toxicity, constipation, nausea and vomiting
41 Visual prompt cards Enhance some patients involvement in decisions around end of life care, as far as they want and are able Maximises the potential for people with dementia to express their wishes and preferences around end of life care Used in conjunction with End of Life care plan page
42 Evaluation 100% of residents notes have relevant information on End of life domain Majority of staff had taken responsibility for writing in End of Life Domain, Two staff who had not initiated end of life discussion or written in care notes had not completed any training around end of life care Discrepancies between residents care plans and medical notes could lead to uncertainty in emergency situations
43 Next Step Address inconsistencies between nursing records and medical records Review transfer letter when people with dementia are transferred home or to another care area so that their preferences and wishes for end of life care are communicated to others Evaluate effectiveness of symptom management guidelines and prompt cards
44 Conclusion Staff need education to build confidence and communication skills to initiate end of life discussions as this can be challenging Improved documentation will improve quality of care for residents around end of life and reduce unnecessary invasive procedures and transfers On going process to ensure end of life care discussions occur
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