Newsletter No 3 - Spring 2000

NEWS

Community Pharmacy Network

One of the major weaknesses that the review of palliative care in the Borders identified was the difficulty of ensuring continuity of supply of essential medicines and devices for drug delivery. In particular outwith the hours of opening for Community Pharmacies. As those who attended the recent palliative care evenings will know, Paul Cormie and myself, together with the wider palliative care team, have been addressing this problem. However, the long-term problem was the sustainability of any scheme without extra resources. A recent announcement by Susan Deacon launching the “Model Schemes for Pharmaceutical Care,” has however brought the development a timely boost. Within this initiative, Borders had the opportunity to develop schemes in three areas:
• Palliative Care
• Care of Patients with Severe and Enduring Mental Illness
• Care of the Frail Elderly

Although the extra resources are welcome, inevitably they are limited, and after discussion at both local and national level, it was felt that the only scheme which could be realistically implemented in the Borders, was one for Palliative Care. Initial discussions have been held with a range of interested parties and the response has been very positive from pharmacists.

Current initiatives are:
• Training programmes at both introductory and specialist level
• Developing models for “Out of Hours” provision of both drugs and advice
• Developing a Network of Palliative Care Community Pharmacists to support not only the Palliative Care Team and patients, but also the existing Community Pharmacy Network.

Our philosophy throughout is to ensure that patients receive optimum treatment, with care being delivered as close as possible to the patient’s home, preferably by their local pharmacy.
David J Dalglish, Pharmacy Adviser

Macmillan Occupational Therapist

Jennifer Bramhall has been appointed as a Macmillan Occupational Therapist working 24 hours per week and based at the Borders General Hospital. She will be responsible for developing the occupational therapy service to oncology and palliative care in-patients. The development of this new service grew out of a breast care support group which has been developed by Jennifer with Joanna Beveridge (Occupational Therapist) and Sue Cruickshanks (Macmillan Breast Care Nurse). This group will continue to run throughout the year. It offers a five week education/information course to ladies throughout the Borders region who have been diagnosed with breast cancer. The aim of the programme is to promote the well-being of participants and look at positive ways of coping with cancer and its treatment. It allows the ladies to explore various self-help skills and learn different methods of relaxation. It also provides an opportunity to share thoughts and feelings in a supportive and confidential environment. Jennifer can be contacted at BGH Bleep 1643, Direct Dial 662356.

NOF Bid

Borders Health Board has submitted a bid for New Opportunities Funding for projects in Cancer and Palliative Care. The Borders application is for a Local Cancer Network with 3 elements
• a Cancer Resource to be based at Borders General Hospital to be used for the provision of chemotherapy and palliative care, and for providing patient information on cancer
• a proposal for improving facilities for providing Palliative Care in Community Hospitals
• a Health Promotion project focussed on healthy eating and exercise to reduce peoples risk of developing cancer

Social Care

Borders Palliative Care Steering Group has been working on the arrangements for providing social care to terminally ill patients at home. The group, which has representatives from Borders Health Board, both Trusts, the Social Work Dept, Crossroads and the Health Council, has been gathering information over the past 6 months to accurately assess the needs of such patients. It is also monitoring the Marie Curie nursing service to determine how closely it is meeting patients’ nursing requirements. Accurate costing of the services required and identification of deficiencies in the current service will enable improvements in planning future service provision.

THERAPEUTICS

Corticosteroids in Palliative Care

Corticosteroids are used frequently in Palliative Care in Low, Medium and High doses in the following situations:
Low:       appetite stimulation
Medium: anti-inflammatory action e.g. tumour pressure effects, lymphangitis carcinomatosa, liver capsule pain etc.
High:      raised intra-cranial pressure

Potency
Prednisolone 5mg is equivalent to 750 micrograms of Dexamethasone. In common usage, 15mg of Prednisolone is equated with 2mg Dexamethasone.

Choice of drug
Dexamethasone has an insignificant mineralocorticoid action and long duration of action making it the drug of choice.

Presentation
Prednisolone 5mg tablets are available enteric coated or uncoated though the ‘gastro-protective’ effect of enteric coating is speculative. The cost of 60 5mg tablets is 86p. Dexamethasone 2mg tablets cost £2.60 for 30. The tablets are soluble in a small volume of water.
If it has to be given parenterally, dexamethasone can be given once daily by sub-cutaneous injection because of its long duration of action. Dexamethasone is generally not suitable for mixing with other drugs in a syringe driver. Once the drug has been started, it may take 3-7 days for the effect to be observed. It is unlikely that an increase above the recommended dose will produce any more benefit e.g. where the drug is used for appetite stimulation, a dose greater than 2mg is not likely to be beneficial.
Corticosteroids may be discontinued abruptly where they have not been used for greater than 2-3 weeks. If used for longer, any reduction should be made gradually. Where Medium or High Dose is used, a reduction in dose by up to 50% can be tried after 1-2 weeks and continued provided there is no loss in symptom control.

Side-effects
Where corticosteroids are used in addition to an NSAID, a gastro-protective drug e.g. a proton-pump inhibitor such as Lansoprazole must be prescribed. Other steroid effects, such as ‘moon-face’, proximal myopathy etc. occur but are not predictable in an individual case. Using the minimal effective dose reduces the risks of these side effects. Osteoporosis is rare due to the time scale in most palliative care patients.

Summary
Corticosteroids are valuable drugs in a palliative care context but must be used appropriately and with care. Dexamethasone is the drug of choice.

Jim Rodgers, Consultant in Palliative Medicine, Borders General Hospital

THE PATIENTS' VIEW

Patient-Centred Cancer Services

The National Cancer Alliance (NCA) undertook the first and only national research project to establish in considerable detail the views of patients about the care that they received throughout what the NCA has called “the cancer Journey” and to ask them to make suggestions about ways in which services could be improved (NCA 1996). NCA is a unique charity formed in 1994 which brings together patients with cancer, their relatives and friends, and healthcare professionals to work together to improve cancer services, treatment and care throughout the UK.

The aims of the NCA are:
• to increase awareness of cancer diagnosis, treatment and care
• to encourage, monitor and promote standardised, high quality cancer treatment and care throughout the UK
• to represent the interests, concerns and views of patients and their carers

Research Findings

Information and Support
Patients wanted as much information as possible, at the right time, and appropriate to their personal needs and circumstances. However some participants reported that they had not received sufficient information and sometimes felt that the information was being deliberately withheld. Participants also wanted detailed information about services, including lists of local and national support and information services, hospital services. They wanted unambiguous information about the practical arrangements they would have to make for their hospital visits and they wanted detailed information about the staff that were looking after them, including a 24 hour contact number

The Approach of Health Professionals
The approach of health professionals, or “attitude” as participants often called it, and their manner towards the patients in their care was a central and recurring theme. Participants reported that they frequently had difficulty relating to health professionals, and had been unable to develop an effective working relationship with them. Many examples of kindness, approachability and sensitivity were also reported. The overriding feeling was that if some health professionals could manage it, then it should be possible for all. The communication skills of health professionals were seen as particularly important, especially at the point of diagnosis, or when “breaking bad news”. The way in which patients were told they had cancer was a major issue. There were repeated examples of thoughtlessness or callous behaviour. Participants wanted their doctors and other health professionals to be sensitive, gentle and honest. They also wanted them not to be afraid to use the word cancer. Often patients saw, and needed to relate to, a large number of different health professionals during their cancer journey. This led to problems concerning the continuity of care they received. Nearly 90% of participants rated “try to ensure continuity of care” as being of maximum importance. They felt that a “linkworker” to help patients through the system would be welcomed.

Environment and Location of Services
There was remarkably little debate regarding travelling distances, although some had been caused considerable inconvenience. Within the hospital, the provision of facilities allowing physical and aural privacy for medical consultations was rated as being of maximum importance by nearly all participants. Most patients felt that those with advanced illness should be separated from those receiving initial treatment and some felt strongly that patients yet to be diagnosed should be separated from those with established cancer.

Speed Versus Time to Think
Speed was regarded as particularly vital in the early phases of the cancer journey most notably at the initial GP referral stage and during diagnostic procedures. Many patients feared that time wasted at these stages had an adverse effect on their overall survival.

Variability of Treatments
Some patients were keen that guidelines be developed, published and then adopted by relevant health professionals.

Conclusions

• Patients with cancer recognised and applauded many examples of good practice and believe that if these can be provided in some places, they should be provided everywhere. It is evident that this is currently not the case
• The needs of patients with cancer vary, but on some issues there is virtual unanimity. It is vital that these issues are addressed by health professionals and purchasers of cancer services, particularly in the context of the current implementation of the Expert Advisory Group on Cancer Report (Calman Hine Report- DoH, 1995).
• When patients are properly consulted and allowed to set their own agenda, they are keen to share their expertise and input their views into decision-making. They produce sensible, measured and carefully considered recommendations

Patricia McMahon, Clinical Nurse Specialist in Palliative Care

FROM THE JOURNALS

Double Effect

The principle of double effect has recently received attention in a debate in the Journal “Palliative Medicine”1,2. The concept was given legitimacy by the judgement in the trial of Dr John Bodkin Adams in 1957: “a doctor... is entitled to do all that is necessary to relieve pain and suffering, even if the measures he takes may incidentally shorten life”. In 1990 the World Health Organisation formulated a definition of palliative care which recognised that dying was a normal process and included the statement that palliative care “neither hastens nor postpones death”. The aim was to discourage the use of futile treatments to prolong life as well as the practice of minimising suffering by hastening death.

In his article Hunt argues that the latter statement is unhelpful since a significant number of palliative treatments such as the use of stents, parenteral fluids and even satisfactory pain control may incidentally prolong life, whereas rapidly escalating doses of opioid and sedative by continuous infusion may hasten death1. He argues that clinicians could use the principle of double effect to justify this latter practice i.e. the “good” effect of relieving suffering justifies the “bad” effect of hastening death whether or not that is the patient’s wish. Hunt suggests that reliance on this legal concept could undermine patient autonomy and informed consent.

Gilbert and Kirkham in their editorial suggest that Hunt’s example is now an extreme and rare occurrence2. They argue that in modern palliative care there is no evidence that currently accepted treatments for symptom relief, correctly used, hasten death. So why is the concept of double effect so closely linked with palliative care? Probably because when caring for patients who are dying, it is inevitable that death will follow treatment more closely and more frequently than in other fields of medicine.

They state that the concept of double effect is often used as an “apologia for the use of strong opioids as analgesics”. Yet the basis of treating patients with severe pain in palliative care is the premise that “people do not stop breathing when they take strong opioids in carefully titrated doses for opioid responsive pain”. Morphine is no different from hundreds of other drugs that we prescribe that have potentially fatal side-effects. Decisions to use such treatments need not undermine patient autonomy - indeed patients should be closely involved in making these decisions. Gilbert and Kirkham emphasise that “the question will always be whether we know (not suspect) that we have hastened or will hasten death.”

“In the patient who is suffering, it is more appropriate to remove the suffering than to remove the patient”3.

1. Hunt R. Taking responsibility for affecting the time of death. Palliative Medicine 1999; 13: 439-441
2. Gilbert J, Kirkham S. Double effect, double blind or double speak? Palliative Medicine 1999; 13: 365-366
3. Kirkham S. Eight aphorisms for palliative care. Palliative Medicine 1999; 13: 457-458

Paul Cormie, Macmillan GP Facilitator

Patient/Carer Perceptions

This research examined community support for terminally ill patients and their carers in one community National Health Service Trust. The views of primary health care teams, providers of palliative care services, patients and their carers were elicited by a variety of methods, including face to face and telephone semistructured interview and questionnaires. This small study of 12 patients revealed that many patients and carers suffer severe strains and hardships and that, on occasions, they perceived the provision of services as disorganised, haphazard and unfair. Although almost always grateful and satisfied with the help being provided, some patients and carers did display some ambivalence, uncertainty and confusion regarding health professionals spheres of expertise and special interest.

This should be of concern to all health professionals caring for terminally ill patients and their families. Of particular concern for the primary health care team may be perceptions of nurses’ limited levels of knowledge and authority and the general practitioner’s lack of concern and interest in them. Generally it seems that the successful management of the individual palliative care needs of a patient is largely dependent upon individual health professional’s skill, knowledge, involvement and commitment, together with the practical aptitude, interventions and resources of the family/carers. Even in such a small geographical area and with a small sample of patients selected by nurses enthusiastic about palliative care, there seemed to be no typical standard of care that could or should be provided for terminally ill patients.

Jarret et al. Patient/Care Perceptions and Experiences of Community Based Services. Journal of Advance Nursing 1999; 29: 476-483

Patricia McMahon, Clinical Nurse Specialist in Palliative Care

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www.in-touch.org.uk : Scottish Borders Palliative Care & Macmillan GPFacilitator Information Site. Last updated 12 November 2001 by Paul Cormie, Lead GP, Borders Palliative Care Network.