Focusing on a patient’s human rights will help you resolve ethical dilemmas in practice
A human rights approach makes nursing care more person-centred
A human rights approach makes nursing care more person-centred
- Nurses routinely face complex ethical questions while striving to meet the needs of patients and loved ones
- The individual's human rights must inform shared decision-making
- A free training programme supports nurses to take a human rights-based approach to their practice
Picture the scene. You’re working on a general medical ward in a busy hospital. A patient, Sonia, wants to refuse hydration and nutrition through her gastronomy tube. She has decision-making capacity and understands her life may be shortened as a result.
As her nurse, what do you do?
Should you persuade her family to convince her to continue her gastronomy feeding at all costs? Should you refuse to accept her choice, and continue to feed her against her will? Or should you accept that while you feel that Sonia’s decision is unwise, she has the right to make this choice?
Dilemmas in distressing circumstances
Complex situations like this are playing out every day. Nurses face dilemmas about how to support patients and service users, their families and loved ones, in what are often distressing circumstances. It can be difficult to know what to do.
That’s where taking a human rights approach to health can help, says Jacqui Graves, human rights lead with the charity Sue Ryder. The organisation, working with the British Institute of Human Rights, is offering free training on human rights and end of life care to support care workers to navigate these often difficult issues.
The training, called What Matters to Me, aims to empower health and social care professionals to deliver personalised, compassionate and dignified end of life care.
It provides a comprehensive introduction to the Human Rights Act (1998) and a framework for shared decision-making, using case law and case studies such as Sonia’s story above, to bring it to life.
‘You can’t change the outcome, but you can change the experience, not just for the person who is dying, but for the people around that person’
Jacqui Graves, human rights lead, Sue Ryder
‘Human rights are based on the shared values of fairness, respect, equality, dignity and autonomy and belong to everyone equally,’ says Ms Graves.
Safeguarding and human rights
‘Safeguarding training is mandatory for all health and care staff, however most do not understand that they are safeguarding – or protecting – those 16 human rights outlined in the Human Rights Act. Most are unaware of what their legal duty is under the act and how a human rights approach can support them to make personalised care a reality.’
Sue Ryder began delivering the programme in March 2017, and by the end of last year had led 108 workshops all over the UK, training well over 1,000 practitioners, around two thirds of whom were nurses.
The importance of a human rights approach to end of life care has been further promoted by a two-day train the trainer workshop, open to those who have completed the one-day human rights workshop in the past 12 months, and who have responsibility for the education and training of others.
Human rights in end of life care
- Everyone has human rights, including staff
- Human rights set the minimum standards for care
- The Human Rights Act, 1998, protects 16 rights in UK law
- Those working in health and care must respect and protect these 16 rights
- Those who are being cared for can use human rights to talk about their care and treatment
Source: Sue Ryder
This approach to care chimes with policy at a national level, Ms Graves adds, pointing out that the Care Quality Commission said at the end of last year that many ‘outstanding’ providers use equality and human rights to drive improvement in care.
According to Sue Ryder director of nursing Sarah Gigg, the training focuses on end of life because this is a time that often comes with complex questions and decisions. ‘It really helps practitioners to think and reflect on truly personalised care that meets the needs of each individual,’ she says.
‘It’s a mandatory course for staff at Sue Ryder because we recognise how important it is, but its popularity more generally has been incredible, and the feedback has been phenomenal. It’s not just for nurses – the range of staff has been quite wide – but it really helps nurses to support patients and their families.’
Ms Graves agrees that end of life is a time that requires a personalised approach. ‘You can’t change the outcome, but you can change the experience, not just for the person who is dying, but for the people around that person.’
She acknowledges that some might feel wary of anything using the term ‘human rights’ because the 1998 act has been portrayed negatively in some quarters as a shield for terrorists and foreign criminals.
But she adds: ‘To me, it’s a useful tool that contributes to balanced and ethical decision-making.’
Diffusing emotional situations
She gives the example of a patient who wants to discontinue treatment, while the family says ‘keep my mum alive at all costs’. In law, someone can refuse treatment, but treatment cannot be demanded.
‘The nurse has an opportunity to act as a broker by explaining what the law says and taking the emotion out of the issue,’ says Ms Graves. ‘She can explain to the family she understands how they feel, but that under the Human Rights Act she has a legal duty to respect their mum’s rights, and that no one has a right to demand treatment.’
‘I’d heard of human rights, but hadn’t really thought about what it meant, and how to apply it in practice’
Kath Keogh, hospice-based practice educator
What is important is that the training is practical and pragmatic, she adds. ‘It asks what does this mean for me and my practice – how can I stay on the right side of the law? It uses case studies based on real-life cases to make it real, and grounded in practice.’
When human rights law and real-life practice collide
Dave is receiving palliative care in the last weeks of life. Dave is gay and lives with his partner. He is estranged from family members as a result of his sexuality. You need to speak to those important to Dave about his deteriorating health.
What do you do?
- A: Speak to Dave’s partner
- B: Contact Dave’s biological family without his consent
- C: Decide not to speak to anyone
The answer is A, because the right to private and family life – Article 8 of the Human Rights Act – supports Dave in identifying who he sees as his ‘family’. For Dave, his family is his partner. It makes no difference whether they are in a civil partnership or married.
Dave has expressed clearly that his partner is his family and next of kin. Therefore no one should contact his biological next of kin unless Dave changes his mind and makes it clear he now wishes them to be contacted.
Following Dave's death, it is the responsibility of his partner to decide whether he will contact the biological kin or not.
Source: Sue Ryder and the British Institute of Human Rights
‘Human rights is about personalised care’
Kath Keogh, a Sue Ryder practice educator based at Leckhampton Court Hospice in Gloucestershire, has taken part in the human rights and the train the trainer courses. She admits to having been surprised by how much she got out of it. ‘At first I thought it might be quite dry, but it certainly wasn’t dry and I came out really enthused,’ she says.
‘It was a subject I didn’t really know much about. I mean, I’d heard of human rights, but hadn’t really thought about what it meant, and how to apply it in practice.
‘From a teaching point of view, human rights is part of ethics and it has helped me communicate that so that people can understand what might be threatening someone’s human rights, such as their right to privacy. It can be small things, like who they want around them, but they all add up. It’s all about personalised care, really.’
Ms Keogh, who was previously a palliative care specialist nurse in an acute hospital, says it would have been useful to have learned more about a human rights approach in that role. She and colleagues regularly apply what they learned from the course to their hospice-based work.
‘There was one lady who was supposed to be admitted to die, but it came out in the telephone conversation that she actually wanted to die at home. So we had to consider how we could uphold her rights and make sure her care was person-centred. We put in hospice-at-home care so she was able to die where she wanted. In that instance avoiding admission was the human rights approach.’
A question of capacity and autonomy
As for the case of Sonia (top), the correct answer, taking a human rights approach, would be to accept that while you may feel her decision is unwise, she has the right to make this choice. Article 8 of the Human Rights Act – the right to privacy and family life – supports Sonia because it is all about autonomy. Sonia has decision-making capacity and has the right to refuse treatment as long as she is able to understand the consequences of her decision.
In law, clinically assisted hydration and nutrition are, like ventilation, seen as treatment. Anyone with decision-making capacity can refuse treatment but they cannot demand it, so Sonia is perfectly within her rights to make that choice.
Jennifer Trueland is a health journalist