Explores palliative and end of life care. Outlines advance care planning and provides information about planning ahead to include using advance healthcare directives
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.
âI do think about it, but then I think
is there any help. I say to the kids
itâs going to happen to me one day
you know⌠it could be years and
years, but it could be weeks and
weeks, we just donât know.â
âDeath was around me since I was ten⌠it
happens, life can be a b**ch, but it
happens.â
âI know for definite I want to be
crematedâŚ,â she said. âI donât know where
I want to be laid⌠buried at sea, or in the
family plot, I donât know.â Carmel Ryan
3. Professor Hardiman âAt 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.â
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
9. What is good end-of-life
care?
https://hospicefoundation.ie/healthcare-programmes/hospice-friendly-
hospitals/
QuestionsâŚâŚ
10. When I receive good end-of-life careâŚ
ďźI 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.
ďźI will be prepared for what lies ahead.
ďźI will have choice, where possible, in my preferred
place of care and have the supports I need for a good
death.
ďźI will have comfort and dignity in my care as death
approaches.
ďźI will know that my family and those important to me
will be supported and cared for after my death.
14. What are the palliative and end of
life care needs of people with
neurological illness?
QuestionsâŚâŚ
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 â need for planning early on in illness
⢠Communication
⢠Care environment
(National End of life Care Programme UK, 2010 & Skirton & Glendinning, 1997)
16.
17.
18.
19.
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
23. Advance Care Planning â
What is it?
ďVoluntary discussions over time about future care
ďProcess not task â may be more than one conversation
ďWhen we know things may change
ďWhen we know decision making
in the future may be difficult
Thursday, September 13, 2018 23
25. HOW
How do you
see things
going from here What are you
hoping for
How do you see
the future
ďź Give the person time to express his/herself
ďź Explore the different options for various scenarios that
might arise
ďź Offer the opportunity to come back to the conversation
at a later time
ďź Look for opportunities within conversations to find out
likes and dislikes
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 â this is legally
binding â 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
34. Acknowledgements
Thank you and Questions
website: www.hospicefoundation.ie
email Deirdre Shanagher
Deirdre.shanagher@hospicefoundation.ie
Email Marie Lynch
Marie.lynch@hospicefoundation.ie
ďź Neurological Alliance of Ireland
ďź Neurological Alliance of Ireland member
organisations
Hinweis der Redaktion
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.Â
- We nurture a better understanding of how planning ahead for end of life enables us to live better now.
Â
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.
Â
TOGETHER
We cannot do our work alone. Dying is everyoneâs 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 â recognising palliative care for people with conditions other than cancer
2008 Palliative Care for All â examined the PC needs of people with dementia , COPD, heart failure
2009 HIQA Standards for older persons â 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 â 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 â some of you may have already seen this clip, apologies. Itâs 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 itâs the experience of the person who is dying that going to tell us whether weâve supported a good death, and delivered good end-of-life care. The IHF have identified five key characteristics of good end-of-life care. Iâd like to invite you to think about how these statements apply to your practice
Get some feedback from the group â 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 â 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 â thatâs 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 â perhaps the most important part. Not an exam.