September 2016.

A seminar organised by the National Council of Women of Great Britain Health Committee together with the Royal College of Nursing West Midlands Region, Birmingham.     Read more…

Thanks to the excellent programme arranged by Ruth Neuberg, Chair of the NCW Health Committee this  proved to be an intense and thought-provoking day concerning issues around end of life care.  The speakers spoke with compassion about their experiences, and ideas for care in the future.

End of life or ending life? – Baroness Finlay of Llandaff, Professor of Palliative Care in Cardiff and
member of the House of Lords.    “How people die remains in the memory of those who live on” Cicely Saunders

Lady Finlay asked “Why should the state not sanction the deliberate shortening of the natural life of its citizens by one person being licensed to deliberately bring about the death of another ?”  Doctors may stop treatment if it is not achieving its purpose – this is good care, and is legal. It is legal for patients to refuse treatment; forced treatment is assault. Suicide is legal. A patient saying “I just want to die” is not legal.

Lady Finlay advocates patient-centred care, with doctors asking patients “how can we make your life better”  and offering to work hard to make it so. To achieve this doctors must get to know patients and their families well. This requires spending time with them. In June 2016 Lady Finlay introduced the Access to Palliative Care Bill in the House of Lords and it is awaiting a second reading. It aims to make provision for equitable access to palliative care.

Organ Donation Professor Magi Sque, Professor of Clinical Practice and Innovation at the University of Wolverhampton and the Royal Wolverhampton NHS Trust. Her research area is organ donation, end of life and bereavement care:

Demand for organs for transplant exceeds supply.  Less than half the number of donors required are available. Living organ donation has now overtaken donation from deceased patients. There are about 70,000 people in the EU awaiting life-saving transplants, with 2 people being added to the waiting list every hour. 12 will die each day waiting for a such a transplant. One person can provide up to eight organs.

End of Life Care is all our business Amanda Cheesley, the Royal College of Nursing; professional lead for end of life care and long-term conditions, led a project at the RCN developing online resources to support nurses to deliver good quality end of life care.

There are one million frail people in the UK with half a million at the end of life stage, ie the last year of life. Care and provision is very variable across the country and policy and action must address this. Many are being failed by end of life care. For the patient the uncertainty about their care is anger-making and devastating.  Good quality community services could save the NHS substantial amounts. It only takes a little thought to provide good end of life care. All staff need to know how and some need to be experts.  No-one should die alone.

It is vital for nurses and carers to:

1 Recognise the patient, their wants and needs

2 Communicate with patients and families; answer their questions; address their concerns

3 Full involvement

4 Support everyone

5 Plan and then Act.

See:  https://www.adass.org.uk/2015-ambitions- for-palliative- and-end- of-life- care

The Nuts and Bolts of Advance Decisions,  Victoria Butler-Cole, Barrister, specialising in cases concerning mental capacity, is the New Chair of Compassion in Dying

If you become incapable and unable to make your own healthcare decisions, doctors will decide what is in your best interests, NOT your family, spouse, partner or next of kin.  The Court of Protection may take over your affairs.

We should all take action before losing the capacity to do so. There are two types of Powers of Attorney: 1: Financial; 2 Health and Welfare.

To retain control under the Mental Health Act 2005 you must write down your wishes in legally binding.  An advance decision to refuse treatment must be adhered to by doctors – it is important such a statement is in writing.

Resources: Compassion in Dying aims to raise awareness about Advance Decisions – no-one else does so. My Decisions will help you plan for you future treatment and care. https://mydecisions.org.uk/

The Case for Assisted Dying Dr Philip Graham, Emeritus Professor of Child Psychiatry and formerly Dean at the Institute of Child Health, London University. Until recently Acting Chair of Dignity in Dying www.dignityindying.org.uk/

Dignity in Dying which campaigns for a change in the law to allow mentally competent, terminally ill people to have assistance from health professionals to end their lives is concerned with assisted dying, not assisted suicide. Dr Graham believes that only a very few people would choose to take this path. He stressed the importance of appropriate palliative care at the end of life and that is must be available to all. There have been no efforts to change the law in Oregon where assisted dying has been available for some years.

Hospice Care…Be Surprised Dr Ros Taylor, Clinical Director at Hospice UK, a charity supporting hospices in the UK, and also a palliative care doctor at the Royal Marsden Hospital.  https://www.hospiceuk.org

Hospice Care is the national charity for hospice care, supporting over 200 hospices in the UK caring for around 360,000 people every year. There are 25 NHS hospices, the rest are voluntary. All aim to

provide a lovely environment, a good death and hospice type care wherever it is delivered.  This means managing uncertainty and suffering, providing dignity and helping people retain their identity. About a quarter of patients are non-cancer patients. There is a need for more non-cancer care. 80% of care is outside the hospice, perhaps at home, or in care homes. Dr Taylor stressed it is important that people talk about their wishes for all aspects of their end of life care. A recent survey found that only 37% of adults had made a will, and even fewer had let someone know what funeral arrangements they would want.

Reading: Staring at the sun by Irvin D Yalom, Piatkus Books, 2008

Being Mortal by Atul Gawande, Profile Books, 2015

Assisted Dying Bill 2015 Rob Marris, MP for Wolverhampton South West, introduced his Bill in the House of Commons in June 2015. It was defeated on first reading so did not progress further.

Mr Marris outlined the Aim of the Bill: to enable mentally competent terminally ill adults (those over 18 years of  age and with less than six months to live) to choose to be provided with medically supervised assistance to end their lives.

Subject to strict safeguards he believes this would:

  • result in fewer adults facing unnecessary suffering at the end of life and give peace of mind
  • bring clarity to the law thereby providing safety and security to both the terminally ill and medical professionals
  • not legalise voluntary euthanasia, or assisted suicide for people who are not dying
  • protect anyone who does not have a terminal illness

Conclusion: It is important for each one of us to consider how we wish to be cared for at

the end of our lives and to discuss our wishes and decisions with our families. To ensure our wishes are taken into account we should make legal Enduring Power of Attorney arrangements for our Health and Welfare and an Advanced Decision to Refuse Treatment if that is our wish. Also, we should make our wishes regarding organ donation known to our families, and make the formal arrangements. You may opt in if in England. In Wales where consent is assumed, you may opt out if you wish. The websites mentioned by Victoria

Butler-Cole are useful references.

As a society we need to be more informed and we need to recognise that action needs to be taken to identify and resource the changes necessary to provide an adequate and acceptable level of end of life care, available to all our citizens. Society must support and urge the government to review the current provision, to research the recommendations of the experts in this field for the changes needed to provide the desired level of service, and to allocate the funds necessary to achieve these objectives.

Following the seminar, the Health Committee of the National Council of Women proposed a resolution at the organisation’s Annual Conference in October 2016, urging the government to increase the provision of local hospice care and also increase the education of doctors in end of life care. Delegates passed the resolution unanimously and therefore NCW has taken this resolution to Government Ministers and will be following up on their response.

What more can we do to help ensure good end of life care for all?