Dr Richard Hillier reports on the successful scheme that provides support for terminally ill patients at home and their carers

One in four of all deaths is caused by cancer. Despite some successes, 94% of patients with lung cancer will be dead within 5 years, and over 50% of patients with breast and bowel cancer will die of their disease.1 New treatments mean that ill patients often live longer, so that GPs and hospices are seeing patients with more complex problems than in the past.

Countess Mountbatten House, an NHS palliative care unit, deals mainly with patients with advanced malignant disease. The unit provides beds for inpatients, but members of staff also have a clear remit to work closely and to support their colleagues in primary care.

Three of the unitÍs consultants are former GPs and some of the specialist palliative care nurses, who work in the community, were previously district or community nurses.

This helps us, in part at least, to understand the perspective of primary care, and to ensure that each side can learn from and support the other.

The unit has three primary aims:

  • to provide good symptom management and emotional and social support for patients with advancing cancer and their families at home;
  • to support GPs, district nurses and other members of the primary care team in achieving this;
  • if possible, to allow those patients who wish to die at home to do so.

Symptom management and support teams

The members of the specialist interprofessional palliative care team are shown in Box 1 below. With the exception of the specialist palliative care nurses, team members work across the whole service.

Box 1: The specialist palliative care team

Consultants

Specialist palliative care sisters

Occupational therapists

Physiotherapists

Social workers

Chaplains

Voluntary services co-ordinator

Secretaries

All team members are under the same management and, to get to know their primary care teams, each is assigned to work in a specified geographical area.

Referral

To ensure a rapid response, patients are usually referred to the unit by telephone or fax. The initial consultation is carried out by the consultant, at the invitation of the GP. One of the following actions may then take place:

  • One-off advice is given to the GP, patient and family.
  • A specialist palliative care sister/ charge nurse provides ongoing support.
  • The patient is admitted to day care to relieve pressure on relatives.
  • The patient is admitted to a specialist palliative care bed for:
    • symptom control
    • rehabilitation
    • respite or terminal care.

Three-quarters of the patients referred do not need to be admitted because the team does not take over existing networks of care.

Co-ordination and communication

After the patientÍs initial assessment, the specialist palliative care sister or charge nurse - the key professional from Countess Mountbatten House - visits the patient regularly. Box 2 lists the areas of responsibility of the palliative care nurse.

Box 2: Areas of responsibility of the palliative care sister/charge nurse
  • Maintaining close contact with the GP and the district nurse
  • Consulting closely with the rest of the specialist palliative care team
  • Initiating advice and support from team members and external agencies, for example social services
  • Varying input according to the needs of the patient, the family and the primary healthcare team
  • Acting as a resource for the patient and family, or ïwaiting in the wingsÍ if that is more appropriate
  • Initiating access to other parts of the service, as required
  • Negotiating discharge of some patients
  • Providing emotional and bereavement support
  • Liaising with the education team at Countess Mountbatten House in response to requests for education and training for GPs and community nurse.

This key worker prevents too many professionals acting in an unco-ordinated way. He or she also facilitates patientsÍ and carersÍ access to a wide range of specialist professionals as needed.

Communication with the rest of the team at Countess Mountbatten House is achieved by direct contact, and through the use of multiprofessional notes and the computerised Pallicare information system.

Pallicare is a trust computer system which allows confidential access to records and letters of patients and provides relevant staff with appropriate patient information.

Pallicare is not yet available to primary care teams. Communication with these teams is by joint visits, telephone contact and use of patient-held community nurse notes as well as meetings.

Communication with hospital teams is also maintained through letters, telephone contact and Pallicare.

Emotional and bereavement support

Emotional support is an integral part of palliative care, and GPs often seek this for their patients. The ethos of the service we provide at Countess Mountbatten House is to offer emotional support sensitively, unobtrusively and without imposing it. This approach is emphasised during the induction of new staff members.

Bereavement support begins even before the patientÍs death. Identifying bereavement risk factors is a critical part of overall care and may occur before the death, for example when preparing a child for the impending death of a parent.

Following a death, the bereaved family will be in contact with the GP, the community nurse or the Countess Mountbatten House social worker.

The unit also provides the following services for bereaved relatives:

  • Written information about practical and emotional issues around bereavement
  • A ïrelatives eveningÍ at 3 and 6 months after the death
  • A ïpartners groupÍ for bereaved partners or close relatives
  • One-to-one support from a specialist bereavement social worker or psychiatrist
  • A library of books is available to help explain the processes of dying and bereavement to children of various age groups.

24-hour access

Across the UK, 24-hour cover has been highlighted as a serious problem for terminally ill patients at home. The increasing use of out-of-hours co-operatives means that the doctor may not have seen the patient before and may be unfamiliar with the case history.

The tactics adopted by primary care teams to deal with this include:

  • Giving the doctorÍs home phone number to the terminally ill patient or carer ¿ this is increasingly rare.
  • Ensuring that the co-operative is informed about any patient who may die out of hours, to avoid admission to an acute hospital ¿ this is difficult to predict.
  • Providing an emergency palliative care bag for the GP on duty ¿ some practices that do their own on-call home visits do this.
  • Providing twilight and night nurses or sitters.

The approach adopted by Countess Mountbatten House includes:

  • Telephone advice from a consultant or senior doctor, available 24 hours a day.
  • A 24-hour admission policy for emergencies.
  • Pre-planning of ïdifficultÍ nights by the specialist nurse and community nurses ¿ this is vital.

By working closely together, we have enabled 52% of patients who are referred to Countess Mountbatten House to die at home. This figure is double the national average.

Conclusion

Box 3 below summarises the key methods we use to deliver a responsive palliative care service. Discussions are taking place to ensure closer collaboration between PCTs and the specialist palliative care service at Countess Mountbatten House. This, and the imminent appointment of network PCT cancer leads, should help to achieve even better palliative care in the community.

Box 3: Methods used to develop and deliver the palliative care service

  • Listening to patients and their carers, to ascertain their needs.
  • Direct contact and close communication with GPs, district nurses and other members of the primary care and hospital teams.
  • Maintaining a real ethos of ïsharing careÍ, which respects and supports the relationship that GPs and district nurses have with their patients and families.
  • The palliative care team does not ïtake overÍ care.
  • Holding palliative care outreach meetings in primary care, to develop common goals for the palliative care service that best support primary care.
  • An annual ïlistening eveningÍ for PCG/Ts to improve understanding of the issues and constraints to providing excellent palliative care at home, and to provide an opportunity to work together to find solutions.
  • Engaging with community health councils, or their equivalents, as well as encouraging formal feedback from patients and their families, to ensure that the service is responsive.
  • Developing an organisational structure that enhances seamless care throughout the patient pathway, from the point of referral to discharge or death (and subsequent bereavement support for carers, if needed).
  • Under a single organisational structure, the palliative care service provides:
    • Community palliative care (an integral part of the comprehensive service at Countess Mountbatten House within one management structure)
    • Inpatient hospice beds for patients who require short term admission for symptom control, respite or terminal care
    • A hospital palliative care team, to improve the skills of hospital teams and encourage them to liaise more closely with primary care
    • Day care to improve quality of life for patients living at home
    • Education and training -this is crucial to improve the skills and knowledge of all those involved in palliative care, from undergraduate students to postgraduate students and primary care teams and professionals, both separately and together.
  • Members of the community palliative care team cover agreed geographical areas, to allow individual team members to build close and trusting working relationships with primary care teams and local agencies.

Reference

  1. Department of Health. On the State of the Public Health 2000. Annual Report of the Chief Medical Officer of Health for the Year 2000. London: TSO, 2000.

 

    Guidelines in Practice, April 2002, Volume 5(4)
    © 2002 MGP Ltd
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