1. Let’s get it right: a human rights approach to end of life care
SPPC Conference - 28th November 2018
Jacqui Graves, Human Rights Lead
Facilitator Narrative:
It’s a great pleasure to be here to run this interactive session on using a human rights approach to end of life care.
My name is Jacqui Graves and I am the Human Rights Lead at Sue Ryder.
My role has been to design and deliver the Sue Ryder human rights training programme.
Taking a human rights approach addresses some of the challenges associated with complex decision-making in end of life care, enables personalisation and supports organisational and cultural change to achieve this.
There can be quite a fear factor around human rights. We hear in the press on a weekly basis about breaches of human rights and high profile cases such as Mid-Staffordshire and Winterbourne view remind us of the human cost of losing sight of humanity and more recently the cases of Charlie Gard., Alfie Evans and the Gosport War Memorial Hospital
But human rights empowers staff and patients alike
In collaboration with

2. Background to training programme
Sue Ryder worked with the British Institute of Human Rights to develop ‘End of Life Care and Human Rights: A practitioner’s guide’ published May 2016
Sue Ryder secured a grant from the Burdett Trust for Nursing to deliver a 3-year training programme to embed this approach into practice
Facilitator Narrative:
Sue Ryder was invited by the British Institute of Human Rights to develop a new resource for healthcare professionals called : End of Life Care and Human Rights: a Practitioners Guide.
The Practitioners Guide was tested and further developed in February 2016 when our CNO and the British Institute of Human Rights delivered 2 pilot workshops. The Guide was finalised and published in May 2016.
Learning from the demise of the Liverpool Care Pathway and some people’s misconceptions of the Human Rights Act, Sue Ryder felt this needed to be delivered as a training programme. We were fortunate to be awarded a generous grant from the Burdett Trust for Nursing to deliver a 3 year training programme.
This is about taking human rights out of the law books and into the heart of practice
Conditions of the Burdett Grant are that this has to be delivered free of charge to staff working across health and social care and not just Sue Ryder staff.

3. Aims of the training programme
Educate and empower more than 1350 individual registered and non-registered staff to feel more confident in embracing human rights as an integral component of end of life care across the UK
Train a cohort of Trainers to roll-out the training in their locality
Facilitator Narrative:
It is a pre-requisite for Trainers to have completed the Registered Workforce Workshop in order to develop the Human Rights expertise to deliver training to others.
It’s a way of maintaining the quality of the training that they will go on to deliver by developing their Human Rights knowledge.
To date we have trained over 1000 professionals across all four UK Nations and 60 have gone on to train as Trainers to deliver the training in their locality

4. Quick Quiz Facilitator Narrative:
So how much do you know about human rights?
What are human rights?
Basic rights that belong to every person in the world, which are underpinned by the values of fairness; respect; equality, dignity and autonomy
When did the UK Human Rights Act become law?
2, October 2000, though it is known as the Human Rights Act, 1998, because that was when the law was passed
How many rights are there in the Human Rights Act?
There are 16 rights. These are known as articles in law.
Can you name any of them?
What’s the most obvious one in end of life?

5. Human rights values are……FREDA
F – Fairness R – Respect E – Equality D – Dignity A – Autonomy Universal to everyone
Facilitator Narrative:
Let me introduce you to FREDA.
FREDA is a useful acronym to remember the values, but also think of the George Michael song Freedom!
These values have been taken to define our rights that are laid down in law, but most importantly they are universal for all and underpin what it means to be human.
These rights apply to you as well.
You should be able to carry out your professional duties in a safe working environment, without violence or intimidation. So you are seen as ‘duty bearers’ as well as ‘rights holders’.

6. PANEL Principles
P – Participation A – Accountability N – Non-discrimination E – Equality L – Legality
Facilitator Narrative:
In Scotland you use the PANEL Principles for planning and delivery of care, there is some overlap here with the FREDA values

7. Human rights are……..
Basic rights that belong to every person in the world Set the rule book for governments Laid down in law
Facilitator Narrative:
They apply regardless of status – nationality, religion, disability, age, sexual orientation, gender, race or any other status and are more than just the Protected Characteristics of the Equality Act., 2010

8. More than just values….
“ to make these rights a reality – to move beyond simple compliance and embrace the spirit of this legislation, so that human rights become active considerations for those who deliver public services and are at the forefront of every interaction.”
Health and Social Care Alliance Scotland. (2016)
Facilitator Narrative:
There have been too many recent reminders of the tragic human cost of losing sight of our humanity when delivering healthcare – the Mid-Staffordshire Inquiry and Winterbourne View to name just two, so the challenge is to …………………….
Bring these to life and make them a reality in practice and go beyond simple compliance to ensuring that they are at the forefront of every intervention.

9. 6 rights most relevant to EoLC
Facilitator Narrative:
There are a total of 16 rights protected by the UK Human Rights Act and here are the 6 rights that are most relevant to EoLC.
They do not trip off your tongue, but we often hear people saying ‘I have a right to…….’ and it’s important to understand what are legal rights, rather than what people think are rights.
In the Training Workshops, we go into greater detail on each of these Rights.
Governments make the laws, but judges interpret them, so we look at landmark Case Law that helps us better understand how each of these rights is being interpreted by judges.
Lastly, we use real life case studies, to recognise human rights issues in every day practice and then use the tools in the Practitioners Guide to identify the human rights issues and empower staff to raise these so that people can make the best decisions they can in the circumstances.
We also empower Practitioners to know what to do if a human rights issue is being ignored and how to escalate their concerns.
© The British Institute of Human Rights 2017

10. Supports Scottish EoLC Strategy & Policy
Strategic Framework for Action on Palliative and End of Life Care (2015)
National Health and Wellbeing Outcomes (2015)
Being Human: a human rights approach to health and social care in Scotland (2016)
National Health and Social Care Standards (2017)
Facilitator Narrative:
So how does that fit with Scottish Strategy and Policy. Human rights are not ‘new’ or ‘extra’ to EoLC
A human rights approach supports EoLC Strategy and Policy, all of which I hope you will be familiar with.
So let’s look at 2 of these from a human rights perspective
Footnote:
The Strategic Framework builds on the achievements of the previous Living Well and Dying Well Action Plan.
National Health and Wellbeing Outcomes – there are 9 outcomes which health and social care partnerships have to report against.

11. National Health and Social Care Standards
I experience high quality care and support that is right for me (Fairness)
I am fully involved in all decisions about my care and support (Autonomy)
I have confidence in the people who support and care for me (Respect/Dignity)
I have confidence in the organisation providing my care and support (Respect/Dignity)
I experience a high quality environment if the organisation provides the premises (Respect/Dignity)
Facilitator Narrative:
It’s also about putting human rights at the heart of standards.
I am sure that you are familiar with these Standards which came into force on 1 April 2018 and are used by the Care Inspectorate and Health Improvement Scotland in inspection of services, in addition to any other legislative and regulatory requirements the service needs to adhere to.
One of the key principles is: 'dignity and respect - my human rights are respected and promoted, I am respected and treated with dignity as an individual, I am treated fairly and do not experience discrimination, my privacy is respected‘
Which again mirror the FREDA values that underpin human rights 11

12. Mapped against framework
Non-registered - Skilled
Registered – Enhanced
Trainers – Expert
Knowledge of professional, legal and ethical approaches to protecting and promoting people’s rights and safety
In-depth knowledge of the professional, legal and ethical approaches that exist to protect and promote people’s rights and safety
Expert knowledge in supporting learning and development in palliative and EoLC
Reflect on your values and beliefs and how this may influence your behaviour, actions and words
Collaborate with others in the use of professional, legal and ethical frameworks that guide shared decision-making
Expert knowledge of professional, legal and ethical issues relevant to people with palliative and EoLC needs
Engage with people in a way that respects their wishes, confidentiality, choices, unique strength and abilities
Lead and coordinate work with people, families and carers as equal partners to identify outcomes that matter to them
Be respectful of choices, preferences and decisions in the last days of life
Comprehensive knowledge of relevant current legislation on capacity, informed consent and confidentiality
Facilitator Narrative:
Apologies this is quite a busy slide, but this shows we have mapped our training programme against the descriptors in the Enriching and Improving Experience Framework for each level of practitioner: Informed, Skilled, Enhanced and Expert.
There is some overlap with ‘Enhanced’ and in reality we have created a 4-hour Workshop for Scotland that incorporates ‘Informed/Skilled and some of Enhanced’ and then the Trainers Workshop further incorporates ‘Enhanced and Expert.

13. UK Human Rights Act, 1998
A foundation law: the Act underpins all other law, which has to be compatible with the HRA e.g. Mental Health (Care and Treatment) Scotland Act, 2003; Adults with Incapacity (Scotland) Act, 2000 and the Adult Support and Protection (Scotland) Act, 2007.
Public officials are under a legal duty to act compatibly with the Human Rights Act (HRA)
The HRA allows a person to ask a court or tribunal to decide whether the actions or omissions of public officials have violated their human rights or are putting them at risk
Facilitator Narrative:
The HRA is the main law protecting human rights in the UK and provides a framework for balanced decision-making for all parties to ensure human rights are maintained.
It makes the international promise of universal human rights real here at home by making 16 of the rights from the European Convention on Human Rights part of our law and the way we do things in the UK.
These rights belong to everyone in the UK and the HRA specifies the ways in which these rights should be protected.
The Human Rights Act is a very short document because all the other Scotland laws hold the detail. It underpins the Mental Health (Care and Treatment) Act, 2003; Adults with Incapacity Act, 2000 and the Adult Support and Protection Act, 2007.
It is the Scottish Government that decides how laws need to be changed.
It sets down legal rules for the behaviour of public authorities, like the NHS, to deliver better services and empowers every person to hold officials to account if necessary.
V – 15 June 2017

14. Who has duties? Core public authorities
Functional/hybrid public authorities
Public authorities, including courts and tribunals
Private or voluntary bodies performing public functions
Facilitator Narrative:
Any services that are regulated by the Care Inspectorate and Health Improvement Scotland have a legal duty under the Human Rights Act.
“any care paid for or arranged by any of these bodies, either in total or in part, means that they have a legal duty.”
The duty applies across services, so it’s not just Board Level or Senior Managers, it is frontline staff – you – that hold this legal duty.
All individuals have rights but not all individuals have a legal duty under the HRA.
Only those employed to deliver services in behalf of the government have a legal duty.
Not for profits
Charities
Private companies

15. Your legal duty FULFILL RESPECT (procedural) (- ve) PROTECT (+ ve)
Facilitator Narrative:
So do you know what your legal duty involves?
You can think of the legal duties under the HRA as requiring 3 types of actions. Known as the Triple Duty: Respect, Protect and Fulfil
Respect – you must avoid interfering with someone’s rights unless absolutely necessary (negative duty)
Protect – must take action to protect someone’s rights where necessary (positive duty). This is the original legal basis for safeguarding, so you have a duty to step in when required. You are safeguarding human rights. Example: a parent is abusing a child – until known or suspected by public authorities it’s just two individuals. Once a public official is aware of a potential violation of HR, then they have a duty to protect the human rights of the child by doing something about it.
Fulfil – must have systems in place to prevent or investigate breaches (procedural duty). Legal basis for reviews into abuse, neglect and deaths – such as Winterbourne View

16. Types of rights Absolute rights Non-absolute rights
can never be restricted
Non-absolute rights
can be restricted to protect the rights of others or in the wider interest of the community
Facilitator Narrative:
There are 2 types of rights:
Absolute
And
Non-absolute
The Human Rights Act recognises that some rights can be restricted to protect people and balance the rights of others.

17. Activity
Right to life
Right to be free from inhuman and degrading treatment
Right to liberty
Right to respect for private and family life
Right to religion, belief and conscience
Right to enjoy these rights without discrimination
Which human rights are absolute and
which can be restricted?
Facilitator Narrative:
Absolute:
Right to Life
Right to be free of Inhuman and Degrading Treatment
Non-absolute:
Right to Liberty – can be restricted if you murder someone
Right to respect for private and family life – can be restricted if a parent was abusing a child
The right to religion, belief and conscience has an absolute and non-absolute component
The right to enjoy these rights without discrimination is a right that has to be piggy-backed to another article. So for example: if an older person was refused treatment, there is the potential to link this article to the right to respect for private and family life. We will cover this in more depth later in the workshop.
Talk about International differences. Depending on time talk about Charlie Gard and Alfie Evans

18. Scenario 1
Brenda has MS. She recently suffered a bleed in her neck and now relies on ventilator support to breathe. Brenda, assessed as having decision-making capacity has asked staff to stop ventilation.
What do you do?
Continue ventilation because Brenda is not capable of making her own decisions if ventilated
Make a decision based on Brenda’s Advance Directive
Immediately withdraw ventilation, without further discussion
Facilitator Narrative:
ANSWER IS B
So with that brief understanding of human rights read this scenario and the options . What do you think?
The Human Rights Act supports staff to be able to make balanced decisions with patients to ensure their care is personalised and takes into account their wishes.
The Right to Private and Family Life, allows anyone with mental capacity to make a choice to refuse treatment, as long as they can demonstrate that they understand that the decision means that their life may be shortened as a result. There is a difference between withdrawing treatment and allowing life to come to a natural end and assisted suicide (assisting a person to commit suicide) or euthanasia (clinician intentionally induces a painless death)
The Right to Private and Family Life allows anyone to make choices, even if those choices may be considered to be unwise.
Who is to say what is a unwise decision? Providing that they are assessed as capable of weighing up the pros and cons of that decision, then they have a right to refuse treatment.

19. Scenario 2
Dave is receiving palliative care in the last weeks of life. Dave is homosexual and is estranged from his family as a result of his sexuality. You need to speak to those important to Dave about his deteriorating health.
What do you do?
Speak to Dave’s partner, even though they are not married or in a civil partnership
Contact Dave’s family without his consent
Decide not to speak to anyone
Facilitator Narrative:
ANSWER A
So again the Right to Private and Family Life, supports Dave to identify who is his ‘family’. For Dave his family is his partner, even though his partner is not biologically related.
Dave has expressed clearly that his Partner is his family and next of kin and therefore no-one should contact his biological next of kin, unless Dave changes his mind and makes it clear that he wishes them to be contacted now.

20. Scenario 3
Sonia wants to refuse hydration and nutrition through her gastrostomy tube. She has decision making capacity and understands that her life may be shortened as a result.
What do you do?
Try to persuade Sonia’s family to convince her to continue her gastrostomy feeding at all costs
Accept that, whilst you may feel that Sonia’s decision is unwise, she has the right to make this choice
Refuse to accept Sonia’s choice and continue to feed her against her wishes
Facilitator Narrative:
ANSWER B
So again the Right to Private and Family Life, supports Sonia. This is the Article that‘s all about autonomy.
Sonia has decision-making capacity and has the right to refuse treatment as long as she is able to understand the consequence of her decision.
This can be uncomfortable for staff who may believe this decision is unwise and who may feel that they are somehow assisting her to die. But Clinically Assisted Hydration and Nutrition, like ventilation, is seen in law as treatment.
And anyone with decision-making capacity can refuse treatment but they cannot demand it.

21. Sue Ryder offer to you:
Book onto one of our existing free workshops through our online booking system:
Look out for workshops being delivered by Trainers in your locality.
Facilitator Narrative:
I hope this has wetted your appetite to learn more about human rights and how it can help you in practice.
3 weeks ago we trained 11 Trainers in Scotland, who will be starting to deliver human rights training in their localities – so do look out for training in your area and look out for Sue Ryder Training Workshops on our website

22. Please do ask me any questions?
Thank you
Please do ask me any questions?