Adequate palliative care for assisted dying (FOI)

​​​​​Request

The Government of Jersey has indicated that the law on Assisted Dying will not be introduced or implemented until there is adequate Palliative Care in place. 

‘Assisted dying does not replace palliative care and end of life care services. A person approaching the end of their life or living with serious illness should be provided the care and treatment they need to maximise their quality of life and minimise any suffering or distress.’

An amendment (Clause 16) by Baroness Ilora Finlay of Llandaff in the House of Lords debate on the Health and Care Bill was accepted in February 2022: 

Health and Care Bill (bills.parliament.uk)

Baroness Finlay of Llandaff, a professor of palliative care medicine and supporter of the amendment, said: “This change is incredibly important. For the first time the NHS will be required to make sure that there are services to meet the palliative care needs of everyone for whom they have responsibility in an area. People need help early, when they need it, seven days a week — disease does not respect the clock or the calendar.”

Baroness Finlay told the Lords that although “general basic palliative care should be a skill of every clinician”, specialist palliative care was a “relatively new specialty, which is why it was not included in the early NHS legislation”.

​As this is the case, please provide the following information:-

A

Has there been any similar consideration or discussions regarding making Palliative Care a legal requirement with adequate government funding in Jersey?

B

The Hospice and Hospice Care:

• What are their service-level agreements with the Jersey government?
• How many nights have been covered by 24/7 staffing by specialist palliative care being available in the community over the last year? 
• How is the efficacy of specialist palliative care input 24/7 being routinely evaluated?
• Where are the results of this being published and available?
• Is there a 24/7 advice line available to patients and their families for palliative care issues?

C

Family Nursing and Home Care:

• What is their service-level agreements with the Government of Jersey?
• How many nights have been covered by 24/7 staffing in the community over the last year? 
• What proportion of these were related to end-of-life care?
• How many of the out of hours staff have has specific Palliative care training?
• How is the involvement of the Family Nursing staff palliative care input 24/7 being evaluated?

Response

A 

As noted in the assisted dying report and proposition, consideration will be given to placing a statutory duty on the Minister for Health and Social Services to provide palliative care and end of life care as part of proposed Adult Safeguarding Law that is currently in development. 

With regard to funding, the 2023 Government Plan committed to between two and three million pounds additional annual spend on end of life and domiciliary care provision in Jersey between 2023 and 2026.

B 

The Hospice and Hospice Care:

• There is a contract for services with Jersey Hospice Care (JHC)
• There is no overnight community specialist palliative care.
• There are quarterly service review meetings with HCS commissioning team, not published. JHC is regulated by Jersey Care Commission (JCC) and reports are published on JCC site. Jersey Hospice Care produce an annual report
• There is not a 24/7 advice line for patients, however patients registered with JHC can always phone the inpatient unit for support and signposting.

C 

Family Nursing & Home Care:

• There is a contract for services with Family Nursing and Home Care (FNHC) 
• FNHC provided overnight care as part of a pilot alongside: 

       Jersey Doctors On Call (JDOC)

       States of Jersey Ambulance Service

       HCS24​

       Emergency Department (ED)

• FNHC covered 319 of the 365 nights required
• FNHC cannot confirm number of nights requiring end-of-life care however 28% of referrals received were for end-of-life care
• There were fewer than five individuals commissioned to provide the night service (out of hours care), all of which FNHC have deemed competent to deliver palliative care through a variety of education, experience and skills advancements for palliative care.

Where numbers are fewer than five, disclosure control is applied to avoid identification of any individual, Article 25 of the Freedom of Information (Jersey) Law has been applied.

There are quarterly service review meetings with the Health and Community Services commissioning team of FNHC services.

Article applied  

Article 25 - Personal information

(1) Information is absolutely exempt information if it constitutes personal data of which the applicant is the data subject as defined in the Data Protection (Jersey) Law 2005.

(2) Information is absolutely exempt information if –

(a) it constitutes personal data of which the applicant is not the data subject as defined in the Data Protection (Jersey) Law 2005; and

(b) its supply to a member of the public would contravene any of the data protection principles, as defined in that Law.