In the past, Palliative Care (PC) has tended to focus on terminal cancer, but as general practitioners well know, patients with other non-malignant chronic diseases also need a primary care team approach to support the complex needs of providing terminal care. In 2010/2011 the Northern Rivers GP Network was commissioned to undertake a 12-month Rural Palliative Care Project aimed at addressing best practice end of life care for sufferers of a chronic disease.
Badged ‘MyChoice’, it was aimed at developing a framework for managing end of life care. The intention was to give patients the opportunity to articulate their choices and enhance the control they have over their terminal care. The project officer (PC Clinical Nurse Consultant Kate Stirling) led the way in developing this document in consultation with local GPs and the NCAHS PC team based at St Vincent’s Private Hospital Lismore.
An excellent resource manual was the result.
Step 1 described a process for initially identifying the clinical indicators as to who should be classified as a PC patient. They are then registered as such in the practice medical record system. An Advanced Care Directive (ACD) is recommended, for which a MyChoice template is provided. This is very clear and easy to follow - unlike many others available.
Step 2 is to assess the patient and carer needs; this is a questionnaire to be filled out by the patient, with carer input as needed.
Step 3 is to develop a GP management plan and/or a team care arrangement with appropriate referrals made to the local Specialist Palliative Care Service (SPCS) when needed. Practice nurses can play a major role in developing these arrangements. To have a framework to use is very helpful for both GPs and the team they work with.
These three steps were based on the Gold Standards Framework © developed in the UK more than a decade ago. It is a systematic approach to providing best practice for end of life care, regardless of diagnosis. It has had strong support from GPs in the UK, and with some adaptations the MyChoice project is well suited to practices here. Chronic care management support systems through Medicare help fund the implementation of these steps.
It is estimated that currently two-thirds of patients whose death is expected are managed solely by primary care providers. The remaining one-third may either require occasional input from a SPCS or have complex needs and require ongoing SPCS involvement. (Palliative Care Australia 2005. A Guide to Palliative Care Service Development: A population based approach)
End of life care requires a team approach. Those who choose to die at home need to have a GP prepared to do home visits.
During 2013, North Coast GP Training (NCGPT), the Northern NSW LHD and the North Coast NSW Medicare Local (NCML) collaborated in a pilot scheme to determine whether providing a GP registrar to assist GPs in looking after their end of life patients under the clinical supervision of the PC Staff Specialist (currently Dr Ken Marr), could make a difference to:
- The proportion of patients who fulfill their wish to die at home when this is manageable.
- The number of days admitted to hospital between referral to the service and death.
- The number of hospital admissions between referral to the service and death.
- The number of completed Advance Care Directives
The initial pilot was funded by the NNSW LHD and NCML, with support for research from Australian General Practice Training and NCGPT. The role of the GP Registrar PC facilitator was to initiate advance care planning by conducting an initial patient evaluation and subsequently providing ongoing home visits in liaison with the palliative care team at the request of the patient’s GP.
It also focused on increased support for clients in the home setting during the terminal phase by providing a formalised end of life planning service and regular medical review in the terminal phase.
Two GP registrars with an interest and training in palliative care were recruited to the role as part of their training.
GPs in a specific geographical area were invited to refer appropriate palliative patients to this service, while retaining the role of the principal treating doctor. Data collected was compared to data collected in the same time period from another geographical area in the Richmond catchment area.
Anecdotal reports from referring GPs, patients and carers were overwhelmingly positive and the interim data on home death rates, hospital admissions and bed days and ACD completion rates have been significantly better in the group receiving the additional service. For this reason the project has been extended for another year.
It is well known that end of life care in hospitals can result in inappropriate, futile and costly clinical intervention. To have a framework to manage such patients according to their wishes, whether at home or hospital with appropriate GP and PC team support, is good clinical practice. At the same time there are potentially significant cost savings for the health system.