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The primary healthcare team approach to palliative care

Ivan Cox
MB ChB FRCGP MRCP
Macmillan Adviser in Cancer and Palliative Care
Primary Care Advisor
London Cancer Networks

GPs and the primary healthcare team (PHCT) manage 90% of a patient's palliative care needs.(1) This is done with ambulatory patients in the surgery, in the patients' homes or in community settings. The palliative approach, commencing at an earlier stage in the disease trajectory than endstage care, is increasingly being applied to non-cancer patients. These include those dying of cardiovascular failure, respiratory failure, neurodegenerative disorders and age-related disorders. A majority of patients and their carers prefer a death at home, or at least the majority of their endstage care at home.(2)
The average GP with 1,900 patients on their list will manage around five patients dying of cancer each year and twice as many with non-cancer diseases.(3)
Most GPs apply the palliative care approach, which promotes both physical and psychosocial wellbeing through key principles - focusing on quality of life; providing a whole- person approach; taking care of the patient and their carers; having respect for patient autonomy; and developing good communications.

Clinical performance in primary care palliative care
The best care is planned care. Patients benefit when the GP is in partnership with the patient, the district nurse, other community professionals and specialists.
The patient's palliative care plan should be coordinated through the PHCT, but requires optimum communication. The skills required for this include:

  • A positive attitude to personal contact.
  • The ability to create appropriate opportunities and time.
  • Familiarity with all communication technologies.
  • The use of recognisable and reproducible communication frameworks.

Tools that can improve communication include:

  • A patient-held record card.
  • Dedicated telephone slots.
  • Faxable and emailable proformas.
  • Direct-access telephone advice lines.
  • Internet chat rooms.

The breaking of bad news is particularly important. Many professionals assume this is a once-and-for-all event, but this is rarely the case. For many patients the realisation that the "journey" they have begun will end in death is a slow incremental dawning and includes frequent questioning and updating by all professionals.

Palliative care frameworks in primary care
Palliative care in the community is a three-level process. It involves care by the PHCT in a community setting; community care with advice from specialist sources such as specialist nurses or consultant specialists; and a shift into a specialist setting.
At these levels the PHCT is working as part of a wider team. There should be a structured approach, including:

  • Assessment - history, examination and investigation.
  • Creation of a management plan, including management aims, treatment, the patient's wishes, place of care, responsibilities, outcomes and the management of emergencies and crises.
  • Re-evaluation procedures.
  • Assessment of carer issues.
  • The management of bereavement.

Clinical issues
Symptom control is the most problematic area for GPs. Pain control is the focus for symptom control strategies. Not all cancer patients experience pain (approximately 12% will die without recognisable pain), and many more non-cancer patients will not have pain. Pain control should be achieved in over 80% of patients, and good partial control in the rest.
The bedrock of pain control remains morphine and other opiates. Co-analgesics are often required for the various forms of neurological, bone and visceral pain. The British National Formulary contains a useful section on pain control.(4) There are also pain control charts and assessment tools that are useful, particularly when verbal communication becomes difficult.(5)
One of the nightmares of palliative care is the development of an emergency during endstage care. The dilemma is as much to do with place of care and handling the carers as with symptom control. It is best to have written contingency plans.

Out-of-hours palliative care
A large majority of general practices now contract out-of-hours cover to cooperatives or deputising services. Three issues have developed that place patients' continued care at home at risk:

  • The absence of handover procedures.
  • The unavailability of emergency analgesics and other drugs.
  • The absence of continuous nursing care out of hours.

If patients are to retain the best of continuity of care, these issues can be addressed with:

  • Patient-held continuation cards.
  • A handover proforma faxed to cooperatives and deputising services.
  • Local arrangements for on-call pharmacists.
  • Better coordination of nursing teams with cooperatives and deputising services.
  • Improved palliative care training for cooperative and deputising doctors.

The NHS Cancer Plan
The government's plan to restructure cancer care through the development of cancer networks in each region will impact upon palliative care, with palliative care networks being created.(6) Cancer leads, who may be GPs or possibly nurses with PCGs/Ts, will begin working with the networks on the strategies and processes for the development of palliative care during 2001.
This restructuring process will be given significant funds to allow it to begin tackling some of the manpower shortages, but it will be able to do so only against carefully crafted commissioning policies, which include assessment and accreditation of both primary and secondary elements of cancer and palliative care.
 
Conclusion
While palliative care remains an integral part of primary care, it has to be recognised that providing the optimum comprehensive care service inevitably requires a team approach including early intervention by specialists.
The bedrock of palliative care remains good symptom control, and PHCTs should recognise all clinical syndromes experienced by dying patients in both cancer and non-cancer situations. They should be familiar with the drug combinations required for symptom control, particularly the use of morphine and other opiates.
PHCTs are familiar with handling dying patients in a number of settings, including nursing homes and community hospitals. The principles applied in the palliative-care approach to cancer care should be maintained for non-cancer patients in all these settings.
Maintaining continuity of care out of hours is proving to be problematic for some patients. PHCTs should demonstrate their commitment to this principle by ensuring that those who provide the care have the means to do so effectively.
The NHS Cancer Plan will radically alter the provision of supportive and palliative care through restructured networks and additional resources, and by the adoption of rigorous assessment and accreditation processes.

References

  1. Addington-Hall JM, McCarthy M. Dying from cancer: results of a national population-based investigation. Palliat Med 1995;9:295-305.
  2. Townsend J, Frank AO, Fermont D, et al. Terminal cancer care and patients' preference for place of death: a prospective study. BMJ 1990;301:415-17.
  3. Summerton N. Diagnosing cancer in primary care. Oxford: Radcliffe Medical Press; 1999.
  4. British Medical Association/Royal Pharmaceutical Society of Great Britain. British national formulary (BNF). BMA/RPS (twice yearly in March and September). London: BMA.
  5. Macmillan Cancer Relief. Helpful essential links to palliative care. 3rd edn. London: Macmillan Cancer Relief; 1999.
  6. Department of Health. The NHS cancer plan. London: DoH; 2000. (www.doh.gov.uk/cancer)

Resources
Association for Palliative Medicine of Great Britain and  Ireland (APM)
W:www.palliative-medicine.org

Cancer BACUP
T:020 7696 9003
W:www.cancerbacup.com

Macmillan Cancer Relief
T:020 7840 7840
W:www.macmillan.org.uk

Palliativedrugs
W:www.palliativedrugs.com

RCN - Palliative Nursing Group
RCN, 20 Cavendish Square
London W1M 0AB
T:0845 7726100
W:www.rcn.org.uk