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Improving access to palliative care for everyone

Author: Baroness Finlay of Llandaff, FRCP FRCGP FMedSci, Prof of Pallative Medicine Cardiff University; Crossbench Member of the House of Lords, and Maxwell Downman, MA (Hons), Parliamentary researcher
04 September 2015

Baroness Ilora Finlay, who this month takes up the role Chair of Trustees at The National Council for Palliative Care, writes for ehospice about her private members' bill, introduced into the House of Lords in June, which aims to ensure that everyone can receive good care at end of life, no matter where they live.

Disease does not respect geography, the clock or the calendar and patients should have access to good quality care in their dying days wherever and whenever it is needed.

A plethora of reports in recent years have highlighted failures in palliative and end of life care. The Francis Report on Mid Staffordshire was shocking, and the recent Parliamentary and Health Services Ombudsman’s report Dying without dignity highlighted inadequate care of dying patients in general care settings, including in their own homes, due to failures in care delivery staff competencies and care systems.

All these cases were deeply distressing and clearly illustrate a steady stream of complaints. Sadly, however, they were not a great surprise.

In the report, perhaps the most shocking of all the chapters was that of a patient on a palliative care ward, where the nursing staff did not recognise and respond to distress, did not use their initiative to obtain a rapid review of the drugs prescribed, and did not feel empowered to contact the consultant on call. One would have hoped that, faced with a distressed patient, an experienced nurse would have taken a telephone order for breakthrough analgesia.

But, without adequate education from the outset of healthcare training, professionals in their development get the message that other aspects of healthcare are more important than care of the dying, do not know how and are not empowered to competently respond.

Importantly, the use of telephone orders, which were witnessed by a second nurse over the phone, read back to the prescriber and countersigned as soon as possible by the responsible doctor, have become almost impossible because of risk-averse policies in nursing.

There is a significant failure in most parts of the England to provide access to round-the-clock telephone advice for all those looking after terminally ill and end of life patients.

A recent study conducted by Sue Ryder found only 44% of areas offered a dedicated 24/7 palliative helpline or coordination centre, only 34% of areas had out-of-hours palliative advice, support and coordination and only 8% of areas had a dedicated 24/7 palliative helpline for patients and carers as well as a 24/7 coordination centre. (1)

My Access to palliative care bill seeks to solve these problems through requiring clinical commissioning groups (CCGs) to commission specific specialist palliative care services and improve research and education in this field.

It would cover the right of everyone to receive good care at end of life, no matter where they live. All CCG’s would have a duty to provide support to those with palliative care needs, especially access to pain and symptom control, support to meet their preferences in care, such as the provision of special communication and physical aids or psychological, social or spiritual support.

All CCG’s would be required to commission specialist palliative care services including seven day services, advice to other clinicians, adequate staffing and a single point of contact for patients and their families. Services must be integrated and around the clock to allow patients to die comfortably in their place of preference.

Importantly, my bill also focuses on education and training, to ensure all staff at every level are adequately trained.

It stresses the importance of pain control and responding rapidly to analgesic requirements as a duty of care, the need for effective communication skills to listen to and share information with patients, the importance of the Mental Capacity Act for palliative care patients and the recognition of the needs of those being bereaved whatever their age.

We know what to do to facilitate a good death for patients. The UK is the world leader in end of life care and our hospice care is admired from abroad. However, we must build upon examples of excellence to ensure there is access to the support and care at the end of life, wherever and whenever it is needed.

References

  1. Sue Ryder. Dying Doesn’t Work 9 to 5. [online] Available from: http://www.sueryder.org/how-we-help/Policy-and-campaigns/Our-campaigns/not-9-to-5/facts [Accessed 2 September 2015]
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Comments | 2 comments

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Baroness Finlay of Llandaff

I am sorry that Ellie has misinterpreted my comments. I would like nurses to be more empowered to build upon their professional skills. As someone who has worked for years with excellent nurses in palliative care, I have seen how empowered nurses transform care. I am not disparaging the nursing profession at all; care depends on the multi-professional team.

08/09/2015 16:50:30

Ellie

It is a shame that Baroness Finlay feels the need to place blame on nursing and nursing policies. If you read the ombudsman's report you would see that in the case mentioned the Unit Sister contacted the on call doctor three times to request additional analgesia for the patient as well as contacting the palliative care advice line. Yes, the Sister could have escalated the situation following the on call doctors lack of appropriate response. However, the on call doctor could also have done their job.

Nursing and medicine need to work together. Allocating blame to one or other profession is divisive and benefits no one. Least of all the patient.

Baroness Finlay's bill I believe is in essence a good approach and the focus on education and training is key as without this nothing can change. However, this disparagement of nurses leaves a nasty taste.

04/09/2015 16:15:43


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