Planning for the future with a neurological disease
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Explores palliative and end of life care. Outlines advance care planning and provides information about planning ahead to include using advance healthcare directives
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Planning for the future with a neurological disease
- 1. Planning for the future with a neurological disease September 21st 2018 Marie Lynch
- 2. Carmel Ryan A degenerative illness like MS raises questions about your mortality, Carmel admits, and she has thought about her wishes for her funeral. “I do think about it, but then I think is there any help. I say to the kids it’s going to happen to me one day you know… it could be years and years, but it could be weeks and weeks, we just don’t know.” “Death was around me since I was ten… it happens, life can be a b**ch, but it happens.” “I know for definite I want to be cremated…,” she said. “I don’t know where I want to be laid… buried at sea, or in the family plot, I don’t know.” Carmel Ryan
- 3. Professor Hardiman ‘At present, many of these conditions cannot be cured, but symptoms can be treated and managed to minimise their effect on the quality of life. Living with these illnesses poses a unique set of challenges to the people involved but also to health professionals in understanding and defining what supports and services should be available. As a result, there is an increasing recognition of the need to adopt a palliative care approach to the needs of this group.’
- 4. Planning for the future with a neurological disease 1. Background info IHF, End of life care, Palliative Care & advancing neurological disease 2. Planning for the future: WHY, WHAT, WHEN, WHO, HOW 3. Specifics Advance Healthcare Directives
- 5. Who we are Our Vision: No-one will face death or bereavement without the care and support they need. Our Mission: To strive for the best care at end of life and in bereavement, for all. Our Values: Change Care Together
- 6. Where and how people die 30% 7% of all deaths caused by neurological disease UK
- 7. Bereavement Healthcare Education & Research Advocacy & Public Engagemen t What we do
- 9. What is good end-of-life care? https://hospicefoundation.ie/healthcare-programmes/hospice-friendly- hospitals/ Questions……
- 10. When I receive good end-of-life care… I will be respected for who I am, and I will be at the centre of all decisions about my care. I will have confidence in the quality of the care provided to me. I will be prepared for what lies ahead. I will have choice, where possible, in my preferred place of care and have the supports I need for a good death. I will have comfort and dignity in my care as death approaches. I will know that my family and those important to me will be supported and cared for after my death.
- 11. What is palliative care? Questions……
- 12. Palliative Care:
- 14. What are the palliative and end of life care needs of people with neurological illness? Questions……
- 15. Neurology Palliative Care Challenges: • Long duration of neurological illnesses • Recognition of end of life phase • Potential sudden death (MND) • Lack of predictable course of illness • Complex multidisciplinary care • Specialist treatments (PD, deep brain stimulation) • Neuro-psychiatric problems • Rapidly advancing disease means that some may need palliative care early on • Many die but not from the neurological condition • Planning end of life care can be challenging • Cognitive changes – need for planning early on in illness • Communication • Care environment (National End of life Care Programme UK, 2010 & Skirton & Glendinning, 1997)
- 20. Planning for the future with a neurological disease 1. Background info IHF, End of life care, Palliative Care & advancing neurological disease 2. Planning for the future: WHY, WHAT, WHEN, WHO, HOW 3. Specifics Advance Healthcare Directives
- 21. Planning for the Future: what when how who
- 22. Thursday, September 13, 2018 22
- 23. Advance Care Planning – What is it? Voluntary discussions over time about future care Process not task – may be more than one conversation When we know things may change When we know decision making in the future may be difficult Thursday, September 13, 2018 23
- 24. WHEN Thursday, September 13, 2018 24
- 25. HOW How do you see things going from here What are you hoping for How do you see the future Give the person time to express his/herself Explore the different options for various scenarios that might arise Offer the opportunity to come back to the conversation at a later time Look for opportunities within conversations to find out likes and dislikes
- 26. Thursday, September 13, 2018 26 HOW
- 27. Planning for the future with a neurological disease 1. Background info IHF, End of life care, Palliative Care & advancing neurological disease 2. Planning for the future: WHY, WHAT, WHEN, WHO, HOW 3. Specifics Advance Healthcare Directives
- 28. Advance Healthcare Directives (AHD): • A document where a person can write down what they would not like to happen in relation to certain medical care treatments • Only comes into force when a person loses capacity, becomes ill and the circumstances in their AHD arise. Thursday, September 13, 2018 28
- 29. Advance Healthcare Directives: Issues that may be covered in an Advance Healthcare Directive • Treatments that a person would refuse in the future – this is legally binding – even if deemed unwise, not based on sound medical principles or will result in death • A request for a specific treatment. This is not legally binding but must be taken into consideration during any decision-making process which relates to treatment for the person in question if that specific treatment is relevant to the medical condition for which the person may require treatment. Request Refuse Thursday, September 13, 2018 29
- 30. Think Ahead: Includes an advance care directive compliant with the new legislation
- 31. Think Ahead form Think Talk Tell Record Review
- 32. Going Forward……. • What one thing can you do differently within your practice or organisation with regard to providing palliative care?
- 33. Still Kathy https://www.youtube.com/watch?v=iTZeSzWNsQg Wednesday, October 3, 2018 33Thursday, September 13, 2018 33
- 34. Acknowledgements Thank you and Questions website: www.hospicefoundation.ie email Deirdre Shanagher Deirdre.shanagher@hospicefoundation.ie Email Marie Lynch Marie.lynch@hospicefoundation.ie Neurological Alliance of Ireland Neurological Alliance of Ireland member organisations
Editor's Notes
- Title slide. Image needed?
- CHANGE: - We drive change through education, innovation, advocacy, practice and mindset, research and communication. -We make a difference in the availability of best care and how it is delivered to the dying and bereaved every minute of every day across all settings. - We nurture a better understanding of how planning ahead for end of life enables us to live better now. CARE: - Through programmes like Nurses for Night Care, Hospice Care for Children, Design and Dignity and Think Ahead we are providing best care for the dying and bereaved nationwide. - The need for the best end of life care is at the heart of everything we do so everyone can experience dignity, comfort and compassion at end of life. TOGETHER We cannot do our work alone. Dying is everyone’s business. We work for and with you for a better end-of life. We co-ordinate and co-operate with individuals, communities, hospices, hospitals and organisations so the principles at the heart of hospice care touch you and your loved ones when needed. Together we make a real difference for people and their families at end of life.
- Specifically talk to you about how you can support night nursing service, SPC developments, advance care planning and Bereavement
- Irish palliative care services are underpinned by the 2001 report of the National Advisory Committee on Palliative care – recognising palliative care for people with conditions other than cancer 2008 Palliative Care for All – examined the PC needs of people with dementia , COPD, heart failure 2009 HIQA Standards for older persons – standards on end of life care and thematic inspections. Requirement for RCCS to have comprehensive policies and procedures on the provision of end-of-life care 2011 OPENING CONVERSATIONS – small scale study done by ASI aimed to develop a model of best practice for PC interventions for people with dementia. Need for more EBP 2012 BCFF feasibility project which looked to develop a vision and direction for dementia palliative care in Ireland. 2014 Report on the palliative Care needs of people with advancing neurological disease in Ireland IHF and NAI which aimed to explore the palliative care needs of people with advancing neurological conditions from the perspective of 7 NAI member organisations.
- In order to explore this a little I want to show you a short clip that really captures what it means to deliver good end-of-life care – some of you may have already seen this clip, apologies. It’s really more appropriate for the acute setting, but we are currently adapting it for residential settings.
- So, I really like how that clip bring good end-of-life care back to the person, because at the end of the day it’s the experience of the person who is dying that going to tell us whether we’ve supported a good death, and delivered good end-of-life care. The IHF have identified five key characteristics of good end-of-life care. I’d like to invite you to think about how these statements apply to your practice
- Get some feedback from the group – open it up
- Palliative care is an approach to care that improves the quality of life of patients (adults and children) and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain, and other problems, whether physical, psychosocial or spiritual (WHO 2013). 2001 DOH acknowledged the provision of palliative care at the 3 levels here 1 by all healthcare staff 2 by staff with some additional training in the area of palliative care 3 By those whose core business is palliative care So what does that mean for healthcare staff looking after a person with MS Look at the lower chart – these are some of the issues that a person with MS will face throughout their illness The black circle indicates the timing for level 1 palliative care – that’s the palliative approach At each of the stages or as a person with MS encounters these issues it may indicate the need for levels 2 or 3 palliative care.
- From2014 J.Weafer report
- Broader than healthcare
- Conversation – perhaps the most important part. Not an exam.