Promoting patient choice in end of life care

A partnership between a foundation trust and a PCT has been tackling an integral part of care planning by asking patients how they wish to be cared for as they approach the end of their life

Christie Hospital foundation trust and Manchester primary care trust are national test sites for the cancer services collaborative. As part of this programme, they set out to analyse the outcome of holding discussions with patients and their carers about their future priorities for care. 

This approach is in line with High Quality Care For All, which stipulates the need for "an NHS that gives patients and the public more information and choice, works in partnership and has quality of care at its heart". The end of life strategy and Healthier Horizons for the North West also support care planning and preferred priorities for care.

The project aimed to test whether preferred priorities for care discussions affected:

• the patient and carer experience at the end of life;

• provision of choice for patients;

• bed use;

• inpatient length of stay;

• inappropriate admissions and re-admissions;

• discharge and transfer planning;

• communication.

Patient choice

Patients hold their own preferred priorities for care document, which can be used throughout their care across a variety of health and social care settings. The document details their thoughts on their care and their preferences, including where they would prefer to be when they die.

Staff can read these records to find out what matters to the patient, ensuring continuity of care. Any changes can be incorporated into the plan.  

Audits have shown that documenting patient wishes and end of life discussions currently tends to occur only in the last few days of life. The focus of care for patients with palliative diseases is often treatment centred, hindering discussions on care planning.

Audits also show that communication between organisations, staff and patients is at best inconsistent and in some cases non-existent. Although some Macmillan nurses and ward and community nurses do discuss end of life care with patients, these discussions are rarely communicated to others involved in their care.

Other barriers include discussing end of life care at "inappropriate" times, when patients are undergoing active treatment. Time limitations on professionals, particularly in the outpatient setting, hinder discussions on patients' preferences for care. Discussions are sometimes not held because the patient is waiting for the doctor to tell them, and the doctor is waiting for the patient to ask. Many professionals lack the skills to discuss such matters and are fearful of bringing about and managing patients' and carers' distress.

Deaths in the cancer centre

The same audits found that most admissions where patients die in hospital are appropriate. The main reason for admission is not for end of life care but for emergency management due to treatment-related side effects, oncological emergencies, disease progression warranting further investigations, or advance disease at presentation.

However, discharges are occasionally delayed due to lack of timely discussions about end of life care, patient deterioration preventing transfer to local services, waiting for bed availability at hospice/local hospital, and sudden end of life events.

Awareness workshops on preferred priorities were held for medical staff and hospital and community nurses, including Macmillan palliative care nurses from the cancer centre and PCT. The training programme concentrated on the concept of patient priorities and effective communication skills.

Critical issues

The attendees identified important issues in implementing preferred priorities for care, which included appropriate timing for end of life discussions, the level of authority required to initiate these discussions, and whose role is it to take part in the discussion. These issues were explored and participants decided to continue with the testing to uncover potential barriers to implementing the scheme.

An end of life project manager was appointed to work two days per week to support and train staff and collect and analyse data.

Attendees asked their patients the following three questions where appropriate:

• In relation to your treatment and care, what has been happening to you?

• Where would you like to be cared for?

• What are your choices for care?

Preferred priorities for care discussions between October 2007 and June 2008 were documented in the patients' medical notes and communicated to their healthcare providers, as well as being documented on a centrally held data collection sheet. 

Averted admissions

Later, the date and place of death were recorded, together with the length of stay for hospital deaths. In the case of the patient being discharged home to die, the number of days between discharge and death was recorded as inpatient bed days saved. An averted admission has been defined as:

• any patient dying at home who suffered an acute event before death that was managed at home but would normally have resulted in hospital admission;

• transfer of care to local services following end of treatment discussions;

• preparation for patient deterioration to minimise crisis management resulting in possible readmission.

During the testing period:

• 163 patient choice discussions took place;

• 29 discussions are still continuing;

• 108 (81 per cent) of preferred choices were achieved;

• 26 (19 per cent) of preferred choices were not achieved.

Of the patients, 20 (19 per cent) died in hospital, 23 (21 per cent) died in a hospice, two (2 per cent) died in a care home and 63 (58 per cent) died at home. This shift in care resulted in 689 inpatient bed days being used for active anti-cancer treatments and 39 averted admissions.

The findings demonstrate that care planning leads to increased patient choice, rapid discharge, averting of inappropriate admissions and shifting care in response to patients' wishes. 

Patients' choices cannot be guaranteed, but the evidence clearly demonstrates that where such discussions occur, there is a greater chance that patient choice will be achieved. Commissioners and providers need to consider the impact and consequences of shifting care.

Resource management

These initial findings indicate that savings could be made on inpatient care. Care planning is an essential and integral part of the patient pathway. It increases patient choice, facilitates rapid discharge and averts inappropriate admissions. 

Further work across the hospital and PCT will include developing education, training and continuing professional development for health and social care staff on end of life care.

The work we undertook was limited to patients with cancer, but the findings are transferable to patients living with other diseases in a range of health and social care settings.