How a "just in case" approach can improve out-of-hours palliative care
For many people who are terminally ill, it is important to be able to spend their last days in their own homes. It is, therefore, essential that these patients have easy access to care and medicines that can help them if their condition were to change rapidly or deteriorate suddenly at night or during the weekend (as is common in terminal illness). However, the provision of out-of-hours specialist palliative care and the availability of palliative care medicines in the community can present major problems.
According to the NHS Cancer Plan, not all cancer patients living at home have
support services available 24 hours a day.1 In addition, palliative care medicines are only readily available during normal working hours, Monday to Friday. Feelings of uncertainty and anxiety can be heightened in patients and carers, particularly out of hours, if there is no easy access to familiar sources of professional help and advice or to the medicines needed to control symptoms that commonly occur in the terminal phase of a disease.2
In some areas, schemes were set up to provide rotas for pharmacies to open for urgent prescriptions, but most of these failed. More recently, GPs have been able to opt out of providing out-of-hours care. There are now fewer surgeries open on Saturdays and this has increased the need for out-of-hours services.
Current problems in palliative care include:
- Lack of information provided to carers and patients by health care professionals
- Restricted availability of medicines required for symptom control
- Lack of planning and anticipatory prescribing by health care professionals
- Poor communication (eg, regarding patient status) between different health professionals in the community
- Out-of-hours doctors with little knowledge of palliative care symptom control and often no access to palliative care medicines
Overcoming the problems
The Mount Vernon Cancer Network covers many parts of Bedfordshire and Hertford-shire. In April 2003, its palliative care therapeutics group set up a multidisciplinary subgroup to address concerns that had been raised by community nurses about the difficulties in achieving symptom relief for terminal patients in the community. The subgroup instituted a number of initiatives to gather information and opinions on the issues involved. In particular, after approaching the network's cancer services improvement team, the first "Making a difference to out-of-hours palliative care services" conference was held in October 2003. This was attended by a wide range of health care professionals from across the network, including doctors, nurses and pharmacists. The back from the conference and other initiatives confirmed that anticipatory prescribing was considered to be the cornerstone of good palliative care and focused the pharmaceutical component of the subgroup's work.
The "just in case" pilot
A pilot study was set up in three areas of the network. The aim was to avoid distress caused by inadequate access to medicines out of hours by anticipating pharmaceutical needs stemming from new or worsening symptoms and prescribing medicines to be used on a "just in case" basis. The initiative was intended to support the "Gold standards framework", a programme that aims to develop a practice-based system to improve the organisation and quality of care for patients in their last 12 months of life.5
The pilot required district nurses, specialist palliative care nurses or GPs to identify
relevant patients (those in their last few weeks of life) ahead of need. The GP then prospectively prescribed small quantities of the appropriate medicines for each patient.
These medicines were stored in a special container - the just-in-case box - at the
patient's home. This box was a blue plastic hobby box (27x20x10cm), with enough space for medicines, a carer leaflet, a prescription sheet and a record sheet for drug administration.
Prescriptions reflected the individual needs of each patient and were written up in the patient's notes and on an administration sheet used only for anticipatory or when
Approved list An approved list of medicines for symptom control in patients in the terminal phase of an illness was already available through the protocol known as the "Liverpool care pathway for the dying patient",3,4 and this was adopted for the pilot. As a result, the following medicines were usually supplied on a "just in case" basis:
- Diamorphine for pain
- Midazolam for agitation
- Cyclizine, haloperidol or levomepromazine for nausea or vomiting
- Glycopyrronium or hyoscine hydrobromide for respiratory secretions
In addition to these drugs, lorazepam tablets were included in the box, for patient agitation. This was for administration by a carer rather than by a nurse or doctor and a leaflet on its use was supplied. The box also contains a copy of the symptom guidelines from the Liverpool care pathway.
Quantities It was originally proposed that three ampoules of the above medicines would be prescribed to enable overnight medication if necessary. However, the practices participating in the pilot considered it more appropriate to prescribe a greater quantity to cover a weekend and in most cases five ampoules of each medicine were supplied - diamorphine and cyclizine or haloperidol could be
supplied in original packs.
The supplying pharmacy dispensed the anticipatory medicines as required. Details were included in the patient's medication record and the expiry dates were added to each box.
Explanation The GP or nurse explained the purpose of the supply to both the patient and his or her carer(s), ie, that the supply had been made to avoid delays or problems in obtaining drugs out of hours. It was made clear that, with the exception of the lorazepam tablets, all items were for administration by nurses or doctors only. It was also made clear that the medicines in the just-in-case box were for the patient only and were not to be given or lent to other people.
The nurse or on-call doctor recorded use of the drugs in the patient's notes and on the administration sheet. If just-in-case medicines were used, the GP was informed to prompt a review of the patient's condition and to
prescribe further medicines. After the death of a patient, the medicines were disposed of according to local policy.
At the end of the six-month pilot, 23 just-in-case boxes had been issued, of which 16 were used. Over the six-month pilot period, none of the 16 patients required admission to a hospital or hospice for end-of-life symptom control - all were able to remain at home. There were only two occasions when a doctor was ed out of hours and just one pharmacist call-out. Those who work in palliative care will know that these figures are unusually low. One of the calls to a doctor was needed when a new GP would only prescribe two ampoules of each medicine. All of the ampoules in the just-in-case box were used on a Sunday so a further prescription was required from an out-of-hours doctor. This case also resulted in the single call-out to the pharmacist so that the medicines could be supplied.
Families welcomed the presence of the just-in-case supply in the home because it provided additional reassurance. One patient, who had not initially wanted a box had a symptom crisis. After having to wait two hours for appropriate medicines during normal working hours, he agreed to have a just-in-case supply. Some weeks later, when the patient entered the terminal phase of his disease, the necessary medicines were readily available.
The net cost of wasted medicines (ie, medicines prescribed but not used and subsequently destroyed) was about £10 per patient.
Although the pilot results were not compared with a control group, we believe that the "just in case" approach is successful in avoiding hospital admissions and reducing the need for out-of-hours services during the often traumatic terminal stages of disease.
The "just in case" initiative follows guidance from the National Institute for health and Clinical Excellence for improving supportive and palliative care services, published in March 2004.6 It is simple to introduce and best practice guidelines have been produced to enable sites to develop their own procedures, based on this experience. The Mount Vernon Cancer Network has now included the details of the pilot in its information for surgeries starting the gold standards framework programme.
The Department of Health has recently published guidance, "Securing proper access to medicines in the out-of-hours period," which includes a section concerning access to palliative care drugs and controlled drugs.7 The guidance recommends:
- Anticipatory care and proactive planning by the primary health care team
- Providing high quality symptom control
- Ensuring the availability of appropriate drugs and equipment in homes
- Anticipating the patient's needs, including possible changes in dosage or drugs
- Proactively encouraging GPs or health care professionals to prescribe sufficient drugs to take account of possible changes in the patient's condition
- Prescribing drugs on an as-required basis, to be and kept in the patient's home for nurse administration
An article in Electronicjuice quoted good practice examples of pharmacist involvement in out-of-hours services developed at a local level.8 In some areas local pharmaceutical services funding has been used to locate a pharmacy with an out-of-hours provider or to establish an out-of-hours pharmacist on a hospital site. Other improvements to out-of-hours access to medicines include community pharmacists providing on-call services for dispensing urgent prescriptions and sealed boxes of palliative care drugs held in designated pharmacies.
The "just in case"pilot allowed successful care of the patients in their own homes - medicines were available when need was greatest - and was well received by nurses, patients and carers.
ACKNOWLEDGEMENTS Thanks to Maureen Bryant, clinical nurse specialist, Iain Rennie Hospice at Home, Berkhamsted; Chris Maynard, hospice at home sister, and Viv Lucas, medical director, both at the Garden House Hospice, Letchworth. In addition, to Ros Taylor, medical director, Hospice of St Francis, Berkhamsted, and David Henson, service improvement lead, and Debbie Walker, service improvement facilitator, at the Mount Vernon Cancer Network Service Improvement Team.
1. Department of Health. The NHS cancer plan: a plan for investment, a plan for reform. Available at: www.dh.gov.uk (accessed 21 June 2005).
2. Thomas K. Caring for the dying at home: companions on the Pathway. Radcliffe Medical Press: Abingdon, Oxfordshire; 2003.
3. NHS Beacon Programme. NHS beacons learning handbook: spreading good practice across the NHS. Available at: www.dh.gov.uk (accessed 22 June 2005).
4. Ellershaw JE, Ward C. Care of the dying patient: the last hours or days of life. BMJ 2003;326:30-4.
5. Thomas K. The gold standards framework in community palliative care. European Journal of Palliative Care 2003;10:113-5.
6. National Institute for health and Clinical Excellence. Improving supportive and palliative care for adults with cancer. Available at: www.nice.org.uk (accessed 21 June 2005).
7. Department of Health. Securing proper access to medicines in the out-of-hours period. Available at: www.out-of-hours.info/ (accessed 21 June 2005).
8. Bellingham C. Where will patients go out of hours for help and advice about medicines. Electronicjuice 2005:274:140-1.
Citation: Electronicjuice URI: 10019364
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