Service planners can support surgeons to meet the quality standards identified by NICE in End of Life Care for Adults by ensuring the following.
Regular mandatory training of all healthcare professionals, including doctors, in how to provide high quality end of life care and care planning should be provided. An example of this is the GSF Acute Hospitals Programme or the free online e-learning provided by Health Education England.
Diagnosis and planning
- Upon referral to the surgeon, service planners should ensure that GP referrals include whether the patient is considered to be nearing the end of life, which may be indicated by the patient being named on a supportive or palliative care or end of life care register, or flagged in another digital record such as a local EPaCCS (Electronic palliative care coordinating system). If so, the existence of an advance care plan, advance statement, ADRT or LPA should be communicated to the surgeon. It may be appropriate to include this as part of a proforma.
- There should be appropriate availability of information (including verbal, written and electronic) for patients approaching the end of life and their supporters on what to expect and on planning for the future.
- Advance care planning proformas are available, for example from the GSF, and service planners should ensure that these are accessible to healthcare professionals for use.
- Ensure that there is appropriate provision to facilitate advance care planning for surgical patients nearing the end of life. This provision includes ensuring appropriate training to surgeons and allied health care professionals and may be included in the job plan of an appropriate member of the surgical team, for example a cancer specialist nurse.
Ongoing care in the final days of life
- Specialist palliative care support and advice should be available 24/7 for patients nearing the end of life, as well as the availability of regular holistic assessments and spiritual support in line with existing End of Life Care guidance.
- MDT discussions should ensure that they cover aspects of advance care planning, such as patient’s wishes, preferences and beliefs when discussing treatment and ongoing care
- Service planners should support the provision of well co-ordinated care, for example through the Electronic Palliative Care Coordination Systems (EPaCC). All clinicians should be able to access any available, electronic, up to date summary document of disease, prognosis, decisions made and planned treatment, with access to the Advance care plan/Advance statement/ADRT or details on the LPA. Where these EPaCC systems do not yet exist locally, the patient’s GP will be able to switch on, with the patient’s consent, their enhanced summary record, which can include such details.
- There should be clear guidance to staff and a streamlined method to support clinicians to start the process of appointing an independent mental capacity advocate (IMCA) for patients without capacity and no friends or family to act as an independent body to support the patient
- Arrangements should be in place for expedited transport and discharge for patients in the final days of life, to facilitate dying in the environment that the patient wishes and which is recorded in their advance care plan
- There should be appropriate facilities and IT infrastructure in place for rapid information sharing with the GP and other community providers. Discharge letters should include information on whether patients are being discharged at the end of life, and if an advance care plan, advance statement, ADRT or LPA exists. Along with details of these documents, more comprehensive information should be available to all health care professionals on the current condition and prognosis of the patient, and what has been discussed with the patient, along with any contingency planning arrangements that have been agreed.
- Services must be designed to support patients with an end of life care diagnosis in the case of an emergency. A concise overview of the patient’s diagnosis, prognosis, recent treatments, decisions made and patients’ preferences should be clear to those treating patients in an emergency and any contingency plans and the content of any advance care plan, statement, ADRT, LPA or DNACPR decision should be effectively communicated. In some areas, the ReSPECT forms are being trialled and, where available, should be used. An electronic summary document accessible to all clinical staff should be available and kept up to date.
- Service planners should ensure that there are appropriately trained and available healthcare practitioners to verify and certify the death in a timely manner.
- There should be support provided to families, friends and carers who are bereaved. This should include immediate and continuing practical, emotional and spiritual support appropriate to them. The National Palliative and End of Life Care Partnership recommends the inclusion of the community and volunteers for the best bereavement support.
- Service planners should actively seek feedback from supporters and, where appropriate, from patients about the end of life care they have received, to ensure constant improvement in the quality of care provided. Service providers should also provide appropriate support to healthcare professionals who have been affected by the death, which includes access to counselling where required.
Ensuring consistent quality
- Surgical units should audit their own performance. National audits into the care provided at the end of life do exist, for example the Royal College of Physician’s National Care of the Dying Audit for Hospitals. However, this audit focusses on performance at a trust or individual hospital level and purely in the final days of life, and does not give performance measures for surgical units.
- Suggested key indicators that surgical units should audit regularly and discuss at governance meetings are
o Documented recognition of the end of life
o Relevant review of medications
o Documented communication with families
o Advance care plan in place before death and whether this is adhered to (unless death is sudden)
o Whether DNAR forms are in place, when they were signed and whether there was senior clinician input/signature
o Bereaved relatives’ views (e.g. from the VOICES survey).
- End of life care should be discussed at regular morbidity and mortality meetings to highlight and reward where good quality care was provided, to learn lessons where it was not, and discuss how to implement future improvements where required. See Appendix 4 for a recommended framework.
Supporting the surgical team
Members of the surgical team may need additional emotional support following cases where their patients have died. Services should consider providing support by;
o Developing structured peer-support programmes including one-to-one discussion with experienced peers following episodes where difficult decisions have been made, or treatment has not gone according to plan (this may be in the form of a Schwartz Round, a structured forum for staff to discuss the emotional and social aspects of working in healthcare)
o Providing structured opportunities for mentoring and open discussion
o Providing counselling should be available to those surgeons that need it
o Ensuring appropriate training for surgeons will enable surgeons to make well informed decisions.
o Use of Incident Analysis, both within a medical or wider clinical team, can be helpful after a death or a critical event to ensure a positive approach to continued quality improvement.
Providing information for patients, their supporters and the bereaved
An important aspect of the care that patients receive at the end of life involves making sure that they have the appropriate support that they require at all stages.
Service providers should ensure that all patients have access to the following information, which may be as part of a leaflet or digital media.
- Information and contact details for local and national support groups for those diagnosed with life-limiting conditions
- Access to advance care planning discussions, including to charities and support groups that can offer the patient advice
- Signposting on the steps to take to create a legally binding advance directive to refuse treatment
- Advice on appointing a lasting power of attorney for health and care, including how to access the Office of the Public Guardian
- The role of the Independent Mental Capacity Advocate (IMCA) including how and when a patient will be appointed one
- Encouragement to flag up early on if they feel their care could be improved or they have questions to ask
- How to complain if they feel that they are receiving inappropriate care