Feedback on behalf of Cardiff and Vale University Health Board (UHB) on the work that is going on across the Inpatient and Community areas in relation to Advanced Care Planning (ACP).

Primary and Community setting

The Primary, Community and Intermediate Care Clinical Board has incentivised the use of ACP’s for GP’s as part of the pacesetter /pathway work that has been going on for the last 3 years, there has been reasonable uptake of this work across the practices in Cardiff and Vale  (47 practices engaged out of a then 65, we now have 61 practices due to mergers, however measuring the impact of the take up has been challenging as it relies on the practice applying the appropriate Read codes and submitting the data. The Pace setter funding is no longer available to practices, however the PCIC Clinical Board continue to promote its use across General practice.

The Community Continuing Health Care teams and Discharge Liaison teams actively promote ACP’s as part of case management and planning for care at home and have promoted this work across the patient pathway for over 3 years (Preferred place of care, Ceilings of care, DNA CPR).

The Community Specialist Palliative care teams(CSPC)  and local Cardiff and Vale Hospice commissioned by the UHB (City Hospice and Marie Curie) offer as part of their assessment process on referral to the  two services; an opportunity to discuss ACP’s (Preferred place of care, Ceilings of care, Advance decision to refuse treatment, DNA CPR, Anticipatory medications, support for LPA for finance , health and wellbeing through social care and welfare rights workers, Will writing assistance and Organ donation discussions where appropriate). 

The CSPC teams are heavily involved in teaching and awareness raising of ACP’s within the community setting for all health professionals and work closely with the Macmillan funded Gp (End of life care) to deliver training as widely as possible. Macmillan have also recently agreed to fund two ACP facilitators post which will commence in August 2018 and will be supported and directed by the Macmillan EOL GP to provide training and awareness across the UHB, also actively undertake ACP’s with patients and residents with specific focus on care home residents in the first 12 months. 

Acute Inpatient area 

The Older peoples consultant teams (Gerontology)  promote the use of ACP’s for the patients they are involved with, which are the only Directorate proactively engaged in ACP’s, other than some areas within the Specialist Clinical Board.  As soon as the ACP facilitators are in post a UHB steering group will be set up to agree the priorities for the post holders for the first 12 months to maximise the impact of their role across the patient pathway.

The Inpatient Specialist palliative care team based(SPC) at the UHB’s two main hospitals (UHW/UHL) are also actively involved in promoting ACP’s for palliative patients admitted to the UHB acute beds (Preferred place of care, Ceilings of care, Advanced decision to refuse treatment, DNA CPR, Withdrawal of treatment,  Anticipatory medications and Organ donation discussions where appropriate).  The Inpatient SPC Consultant and Lead Nurse operationally oversee and directly employ the Macmillan funded posts and all planned work is linked to the End of Life Delivery Plan for the UHB.

The UHB also has a Paediatric SPC team who provide support for children and young people up to the age of 18 when the transition to adults services takes place, they would offer ACP’s as part of their support of the child and the family (Preferred place of care, Ceilings of care, Advanced decision to refuse treatment, DNA CPR, Anticipatory medications, Withdrawal of treatment and Organ donation discussions where appropriate). 

Heart Failure Supportive Care clinic Llandough Hospital: a project that is being run by Dr Clea Atkinson as a Bevan Commissionn Exemplar project and that has shown demonstrable success with establishing patients’ advance care prweferences at an earlier entry point. 

 Should you require any further information or discussions on any of the information please do not hesitate to contact myself, Dr Melanie Jefferson, Lead Consultant in SPC and or Mel Lewis, Lead Nurse for SPC for the UHB

City Hospice,  Cardiff

Each patient offered opportunity for ACP following clarity of understanding of the patient’s illness and expectations.  

Services Provided:

Ceilings of treatment Conversations specific to person’s illness and circumstances

• ACP  discussed and each individual is offered to include plans formally (written forms used include C&V UHB ACP A and B form), shared with GP and C&V UHB Portal or informally (letter to GP/portal/CANISC) and discussion at GP palliative care meetings. ACP-B forms (for those without capacity) are completed with next of kin, other professionals involved in the individuals care if there is not an existing POA in place.

• Discussion concerning resuscitation and if appropriate completion of DNA CPR document. If a DNACPR document is completed the patient retains a copy, the top copy is sent to the GP for their records and they forward it onto OOH. Our hospice scans the document into the C&V UHB portal and marks it on CANISC.

• ADRT (Advance Decision to Refuse Treatment form filled in by patient) if preferred can be arranged

• Assistance with establishing Power Of Attorney  (social worker in City hospice helps clients with this aspect)

• Free will services offered by hospice

• Preferred place(s) of care discussions

• Preferred place(s) of death

• Anticipatory medication and community medication drug chart to enable patients today at home even if symptoms become more challenging

Cardiff community preferred place of death Service Review (published in BMJ Supportive and Palliative Care see abstract below)

Objectives: The majority of people would prefer to die at home and the stated intentions of both statutory and voluntary healthcare providers aim to support this. This service evaluation compared the preferred and actual place of death of patients known to a specialist community palliative care service.

Design All deaths of patients (n=2176) known to the specialist palliative care service over a 5-year period were examined through service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when the patients did not achieve this preference.

Results Between 2009 and 2013, 73% of patients who expressed a choice about their preferred place of death and 69.3% who wanted to die at home were able to achieve their preferences. During the course of their illness, 9.5% of patients changed their preference for place of death. 30% of patients either refused to discuss or no preference was elicited for place of death.

Conclusions Direct enquiry and identification of preferences for end-of-life care is associated with patients achieving their preference for place of death. Patients whose preferred place of death was unknown were more likely to be admitted to hospital for end-of-life care.

Ali M, Capel M, Jones G, et al The importance of identifying preferred place of death BMJ Supportive & Palliative Care  doi: 10.1136/bmjspcare

Marie Curie Hospice Cardiff & Vale

Corneal Donation working group: This project gives patients and their families the opportunity to talk about the important area of corneal donation, and whether, after they die, they would consider organ donation. “The gift of sight: corneal donation in the hospice setting” was a finalist at the 2018 NHS Wales awards. In December 2015 ‘Organ Donation Wales’ changed to become a ‘soft opt-out’ system, but a 2017 government report found this had not translated into a rise in donors. There is a common misconception amongst hospice patients and families that medical conditions such as cancer make someone ineligible to donate. 

A series of changes were implemented as individual Plan, Do, Study, Action (PDSA) cycles. These included raising awareness through an education session delivered to the hospice doctors, changes to the clerking template, increasing the confidence of ward doctors with a lower referral rate, and using ward cross-cover to allow staff to observe doctors from other wards discussing donation with patients and families.

The aim of the project was to make the discussion and practice of corneal donation the norm in the hospice. It is hoped that the hospice can serve as a pilot site for Wales to encourage other hospices to follow suit, and together increase the number of corneal transplants to restore sight.

Free Will Writing Service: Marie Curie offer a free will writing service for patients receiving care from their community nurse specialist team, day unit service or in-patient unit.