Managing symptoms at the end of life

Winter 2011

Macmillan Area Lead Pharmacist Linda Johnstone describes the implementation of Patient Group Directions and Just in Case boxes in NHS Lanarkshire.

Many people nearing the end of life have a strong desire to remain in their own home for as long as possible. Ensuring timely access to medicines can prevent unnecessary crises, such as an emergency admission to hospital, and distress for patients and their carers.

In 2007, I became involved in the development of Patient Group Directions (PGDs) for four medicines (midazolam, haloperidol, levomepromazine and hyoscine butylbromide) that are commonly required to manage symptoms at the end of life.

The PGDs were approved by the primary care and therapeutics committee and put into practice in NHS Lanarkshire in 2008.

Living and dying well

The publication of Living and Dying Well| by the Scottish Government in October 2008 led the local managed clinical network for palliative care to consider Just in Case boxes as a way to facilitate anticipatory prescribing and enhance patient care. Subsequently, I joined a working group that developed a policy to ensure patients within NHS Lanarkshire, who wanted to die at home, would have medicines immediately available to them.

Living and Dying Well is a national action plan that aims to improve the provision of palliative and end-of-life care across Scotland. The report outlines 24 key action points that provide a focus for NHS boards to plan and develop palliative and end-of-life care services and improve equity of access.

Action 6 recommends that PGDs and Just in Case boxes are considered as a way of facilitating anticipatory prescribing and preventing unscheduled admissions to hospital. The use of PGDs in NHS Lanarkshire is highlighted as an example of good practice.

Implementation of PGDs

The PGD is a legal framework that allows out-of-hours community nurses to administer injectable medicines to alleviate the symptoms of nausea, vomiting, anxiety, terminal restlessness, respiratory secretions and confusion or agitation in patients who meet the criteria. Nurses can administer a specified amount of the medicine without the need for medical referral. This means symptoms can be managed promptly and patient/carer distress is minimised.

Macmillan professionals in NHS Lanarkshire, out-of-hours nurse coordinators and the practice development unit developed an education programme that provides staff with the clinical and pharmacological knowledge to work within the scope of each PGD, and within professional and organisational standards.

Robust systems are in place to closely monitor clinical usage and to provide an audit trail of the medicines. Audit findings have revealed that the most common reason for a medicine to be administered under a PGD is lack of anticipatory prescribing or sudden deterioration in a patient’s condition. To ensure 24-hour access to end-of-life medicines, steps must be taken to support anticipatory prescribing and have medicines available in the home before a patient enters their last days of life.

Pilot of Just in Case boxes

A pilot study is currently ongoing to assess the value of placing a Just in Case box into a patient’s home a few weeks prior to their anticipated death. Medicines are prescribed for the patient by their GP ‘just in case’, and are stored in a readily identifiable box along with needles and syringes, a sharps disposal box, and a prescription and administration record.

This ensures symptoms can be managed effectively and without delay. The prescribed medicines have been aligned with the PGDs and a suitable opioid is also included for pain relief.

The boxes are being piloted in four areas across NHS Lanarkshire and have been promoted by the Macmillan GP facilitator and community Macmillan nursing team. Initial audit findings are extremely positive. There is evidence to show that the boxes have prevented calls to the out-of-hours service and avoided hospital admission. An audit form is completed for each box to evaluate the benefit to the patient against the cost of medication. Each form is assessed and will be used to build a case for area wide implementation.

In practice

A 69-year-old man with bowel cancer had expressed a wish to die at home. With the patient’s consent, a Just in Case box was placed in his home three days before his condition deteriorated. District nurses were able to effectively treat any practicepain and agitation by using medication from the box. The patient died comfortably at home a short time later.

The nurses remarked that having ready access to the medications meant they were able to manage his symptoms efficiently without having to arrange a prescription and collection of the medication from the pharmacy. His family were grateful that they were able to remain with him in the last hours of his life and that his symptoms were well-controlled.

Definitions

A Patient Group Direction is a written instruction for the supply and/or administration of a named licensed medicine for a defined clinical condition. PGDs allow specified registered healthcare professionals to supply and/or administer a medicine directly to a patient with an identified clinical condition without them necessarily seeing a prescriber.

The healthcare professional working within the PGD is responsible for assessing that the patient fits the criteria set out in the PGD. (British Medical Association).

A Just in Case Box contains a small supply of prescribed injectable medicines commonly required for symptom relief in the last days of life. It also includes sundries and documents to allow the medicines to be administered promptly if symptoms develop. The box is placed in the patient’s home, with their consent in case they need the medicines later on.

More information

Email Linda|.