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What has human rights got to do with end-of-life care? - #WeEOLC
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Hosted by WeEOLC using #WeEOLCThis chat is guest hosted by @Sue_Ryder
Author: Jacqui Graves, Sue Ryder’s Human Rights Lead
In our normal day-to-day lives and in the media, ‘human rights’ is a term that is bandied about with very little understanding of what it actually means. In our lives as health and social care professionals, our understanding is often equally as limited. When someone is ‘safeguarded’ or a ‘best interest decision’ is made about an individual using care services, what is being safeguarded is someone’s human rights. Yet there is a quirk in most organisations’ approach to training in that safeguarding and mental capacity are covered by mandatory training for most health and social care professionals, but human rights isn’t. The irony is that practitioners would be more confident in their decision to safeguard someone or with a 'best interest decision' if they could effectively use their legal duty under the 1998 Human Rights Act.?
Most organisations attach great importance to human rights and regard it as central to their organisational values. However in everyday practice, many health and social care professionals vaguely know something about human rights but generally seem to assume that they, and their employer, must be abiding by them otherwise they’d be called out.
I’ll be honest, before I took on this role for Sue Ryder, I didn’t realise just how useful the Human Rights Act could have been in helping me make decisions and in acting in the best interests of the people I’ve provided care for in a number of roles and a range of levels of seniority.Now that I have delivered over 15 training workshops on human rights in palliative care to over 160 professionals, including to safeguarding and mental capacity leads, I can see the huge difference that human rights can make to practice. Everyone who goes through the course realises that the Human Rights Act is the missing link in terms of practical application of knowledge. Suddenly they can see how safeguarding, mental capacity and human rights are all pieces of the same jigsaw, and the legal framework all falls into place.
One of the reasons people find the course so helpful is that the Human Rights Act helps professionals to de-personalise decisions from their own moral and ethical beliefs, and instead, it empowers them to personalise decisions in line with what the person in their care wants. And, of course, it also provides a framework that protects them in law.So why are health and social care professionals so scared of human rights? And why don’t they use the Human Rights Act as their ‘friend’ when making decisions? There are a number of barriers that I’ve come across as I’ve been discussing this with participants over the last few months:
- unfamiliar language which can be very off-putting
- lack of knowledge regarding human rights as a basis for safeguarding, mental capacity and protection orders
- fear of introducing legal concepts into care delivery
- lack of understanding how knowledge of this can enhance care delivery and confidence
As health and care organisations, as we try to move away from a paternalistic approach to decision making towards a balanced, shared approach to personalised care with articulated risks, it’s important that we as health and social care professionals overcome our fears and embrace what the Human Rights Act has to offer us. Under the Human Rights Act, everyone working in health and social care has a legal duty to respect, protect and fulfil the human rights of those in their care.
- Do you understand how to meet that triple duty?
- Do you understand how human rights as a framework can help you make balanced and ethical decisions?
If your answer is 'no', and your work is in any way connected to end-of-life care, you would benefit from the Sue Ryder training, 'What Matters to Me: a human rights approach to end of life care’.
For more information visit: www.sueryder.org/humanrightstraining
In our tweet chat we will be discussing the typical, albeit fictional case study of Camille.
We will be asking the questions:
- What would you do if presented with this situation?
- Which of Camille’s human rights are not being respected?
- How could you use the Human Rights Act, 1998 to help make a balanced decision in this situation?
- How would you raise the human rights issues with the family and medical team?
We look forward to seeing you on the 5th December!
Case Study: Camille
You are a ward nurse specialising in end of life care, attending a ward meeting with Camille, an 88 year old patient in your care being treated for pneumonia and congestive heart failure. Camille has been a patient on the ward for almost a month. She has made a slow recovery from pneumonia and is physically weak. Camille is considered by doctors to be nearing the end of her life. Whilst she has difficulty breathing and has difficulty walking unaided, Camille has been assessed as having capacity to make decisions about her care and treatment and is able to make her wishes known to others. She has told doctors and family several times that she plans to leave hospital as soon as possible to return home.
Prior to her hospital admission, Camille lived alone in her family house, where she had been since childhood. Camille has two daughters and a son, who had recently shared helping out with daily tasks like getting out of bed, dressing, shopping and cleaning.All children are at the ward meeting, as are the ward Consultant and the ward manager. The meeting is to decide where Camille will receive her end of life care. Having spoken to Camille, the Consultant knows her wish to die in her family home, cared for by her family. However, she is of the opinion that Camille is too unwell and requires hospital care to meet all her physical health needs.
Camille’s family agree with the doctor. Although they sympathise with their mother’s wishes, they are more concerned about the consequences of her returning home and not getting the care she needs.Camille’s son, Daniel, says that his worst case scenario is his mother dying alone or having no access to pain relief when she needs it. Camille assures him she understands the risks but still wishes to die at home. The ward manager, who has spent time with Camille during her stay in hospital, says she believes Camille should be able to die at home with help from the NHS.
However, she questions whether the care she is likely to have access to in the community will be enough to guarantee her a basic level of comfort and a ‘good death’. Finally, you share you concerns that by prolonging Camille’s stay in hospital when she is nearing the end of her life, health professionals would not be respecting her wishes about how and where she wants to die.At the end of the meeting, the decision reached is for Camille to remain on the ward to give her time to recover sufficiently from pneumonia before making plans about where she will receive her end of life care.