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Newsletter No 2 - Summer 1999
| NEWS | CLINICAL DEBATE |
| Palliative Care in Scotland | Parenteral Fluids in Terminal Care |
| New Faces | CLINICAL TOPIC |
| Guidelines Group | Lymphoedema |
| Incapable Adults (Scotland) Bill | FROM THE JOURNALS |
| Syringe Driver Questionnaire | Palliative Nursing |
| Palliative Care Out of Hours | Encounters with Doctors |
Palliative Care in Scotland
The SPA (Scottish Partnership Agency for Palliative and Cancer Care) have been considering ways of communicating with members of the new Scottish Parliament. As a first step they have produced a leaflet entitled Palliative Care in Scotland. This provides a brief outline of what palliative care is and the services available. It also has some interesting facts and figures. The SPA hope that the leaflet will also be useful as a brief introduction to palliative care in Scotland for other audiences and it may be a useful addition to patient information leaflets already available in waiting rooms. A copy is enclosed and further copies are available from the SPA.
There have been two new medical faces about the Hospital Palliative Care Service. Peter MacDonald, a GP trainee based in Bonnyrigg Health Centre, has been attached to the service since mid-February for one and a half days per week. This attachment is for 6 months. We also welcome Sally Hanley, Specialist Registrar in Palliative Medicine, from Edinburgh who started a 4 month attachment to the service in April. Sally is the first SpR to rotate to the service since it was approved for Higher Medical Training. The service continues to have a regular stream of temporary nursing attachments both from Napier University and staff at BGH. All of them keep the ‘oldies’ on their toes!
A multi-agency working
group has just finalised Good Practice Guidelines and an Audit Tool based
on national standards for Palliative Care within both hospital and community.
Representatives on the group, which is based in Duns, come from hospital
and community nurses, PAMS, Social Work Department, General Practice,
CRUSE, and a local minister. The Good Practice Guidelines cover:-
1. Co-operation with Other Agencies
2. Symptom Control
3. Patient/Carer Information
4. Emotional Support
5. Bereavement Care and Support
6. Education and Training
The Guidelines will be implemented as of 1 July 1999 and initial audit
and evaluation carried out after 3 months. It is hoped that these guidelines
will then be disseminated throughout the Borders.
Incapable Adults (Scotland) Bill
The above Bill will be among the first debated in the new Scottish Parliament. While the bulk of its proposals have to do with the provision for, and guardianship of adults with a learning disability or who become demented, there is a section containing two proposals which may have a profound effect on patients in a palliative care situation. One is the proposed legal status for Advanced Statements (a.k.a. ‘Living Wills’, Advance Directives, Advance Refusals). This would give legal support for carrying out the previously stated wishes of a patient to refuse treatment should they become incapable. The second is the clauses dealing with “witholding and withdrawal of medical treatment from incapable adults”. There is however no proposal for any change in the law regarding euthanasia, though some may argue the inclusion of the above clauses may be the start of a “slippery slope”. For those who may be interested the full text of the Scottish Law Commission report, including the draft Bill is obtainable from HMSO,Edinburgh (£19.65).
The recent questionnaire
which was sent to all Borders GPs produced interesting results. First
of all there was an 82% response rate from the practices (only 4 practices
did not return at least 1 response). In 63% of practices more than 50%
of GPs responded. This I think is a remarkably good response to a questionnaire.
• 20% of individuals had experience difficulty in obtaining adequate quantities
of necessary drugs ‘out of hours’.
• 94% of respondents had used the Syringe Driver within the past 12 months.
In the great majority of replies the use of drug combinations was in keeping
with standard practice. The questionnaire did not allow any detailed enquiry
into the choice of antiemetics in particular clinical situations. This
could provide a further interesting study.
Improved arrangements for dealing with palliative care problems arising out of hours will become operational in the autumn. Controlled drug cupboards will be installed in each out of hours primary care centre and will be stocked with a selection of commonly used drugs in adequate quantities for managing such problems. It is intended that these will be looked after by community pharmacists who will receive some specialist training in palliative care.
The cupboards will also contain a syringe driver and related equipment as well as some simple guidelines on commonly used drug combinations and the use of the syringe driver. The project is being funded by Napp Pharmaceuticals. A simple patient handover sheet has been developed to improve the information available for duty doctors out of hours.
Locally based multi-disciplinary
meetings for doctors, nurses and pharmacists have been planned to introduce
and discuss the improvements and to provide some information on managing
palliative care crises. The meetings will be held in
• Kelso Cottage Hospital on Monday 27th September
• Education Centre at BGH on Thursday 7th October and
• Hawick in October.
Further information will be circulated near the time.
Parenteral Fluids in Terminal Care
THE
CASE FOR
Jeremy Keen, Consultant in Palliative Medicine, St Columba’s
Hospice Edinburgh
It seems somewhat paradoxical that the provision of artificial hydration to patients with advanced cancer or other incurable illness has provoked so much heated debate in palliative care. The maintenance of intravenous ‘drips’ is often quoted as an example of the medicalisation of the dying process against which so many in hospice and primary care have fought. However, the use of subcutaneous infusions of powerful sedatives and tranquilizers is often actively promoted.
In the treatment of delirium, often simply described as restlessness, confusion or agitation, such an approach is rarely questioned. Patients with advanced cancer have many predisposing factors for the development of delirium principally a decreased intake of oral fluids and the prescription of multiple medications usually including opioids. Those working in the field of Geriatric Medicine have long since recognised the value of fluid therapy in the treatment of delirium. In our experience at St. Columba’s the treatment of delirium by overnight subcutaneous infusion is minimally invasive and well tolerated. Since introducing this approach for patients with delirium with no other reversible causes we have been able to demonstrate a 25% decrease in expenditure on midazolam and haloperidol.
In the community the development of delirium is often the precipitant for hospice or hospital admission. Our experience is that overnight fluids can be given successfully in the home and can help avoid an admission that is usually a disappointment to patient and carers alike. Our ultimate goal in palliative care is patient comfort; physical, psychological, social and spiritual. Fluid therapy for the treatment of delirium should not be dismissed out of hand in palliative care and similarly the indications for and possible side effects of regular sedatives should be more closely examined.
THE
CASE AGAINST
Jim Rodgers, Consultant
in Palliative Medicine, Borders General Hospital
The primary aim of treatment in terminal care should be the comfort of the patient. The ‘natural’ course of events is that the patient, perhaps due to increasing weakness, becomes less able to maintain an oral intake. As a result of this there is usually a corresponding reduction in bodily secretions both internal and external. From a clinical standpoint there is a reduction in saliva and respiratory secretions that may result in less dyspnoea and coughing; a reduction in gastro-intestinal secretions similarly reducing nausea and vomiting and in addition decreased urine production giving a reduction in episodes of incontinence. The most obvious downside to the approach of accepting what is the ‘natural’ pathway in care of the terminally ill is the concern for an increase in the incidence of thirst and the effects (whatever they may be) of dehydration.
Physiologists tell us that the human being is, compared with his canine counterpart, particularly unskilled in being able to differentiate between thirst and dehydration. Man feels thirsty when he is not dehydrated and may not feel thirsty when he is. It is not unreasonable to conclude that the terminally ill patient can only express any discomfort as a result of dehydration in terms of thirst. Some clinicians maintain that dehydration leads to poor renal function, drug accumulation (particularly opioids) and increase in side effects for example myoclonus, sedation etc. Perhaps these effects should be more rationally treated by a reduction in the dose of drug used.
“It remains unproven whether I.V. fluids offer symptomatic relief in this situation”. This statement is take from a paper by Kilian Dunphy and others (including Ilora Finlay) and is a view to which I subscribe. Hypodermoclysis (subcutaneous infusion) is a technique for fluid replacement which, while possible, has little place in care of the terminally ill.
Lymphoedema
What is it?
Lymphoedema is chronic swelling of tissues due to a failure of the lymphatic
drainage system. This may be congenital/primary or secondary due to damage
or trauma to the lymphatics. Is it curable? Lvmphoedema is a chronic long-term
condition which can be effectively managed but not cured.
Who gets it?
Lymphoedema can affect anywhere in the body but is commonly seen in limbs
where there is a limited exit route of the lymphatics. This may be congenital
or due to damage particularly where surgery has been performed on limb
nodes or damaged by irradiation. It affects both males and females.
What is the treatment?
Treatment for lymphoedema is based on four main cornerstones, namely:
• skin care
• exercise
• simple massage
• support
Where can treatment
be given?
The treatment regime involves a high level of patient compliance and motivation
as it is generally self administered in a home setting.
What do I do if
I have a patient with Lymphoedema?
The Palliative Care Team run a weekly clinic on a Wednesday afternoon
at the BGH. This is led by Dr James Rodgers and Elaine Peace, Clinical
Nurse Specialist, who see patients by appointment.
Who should I refer?
All patients with chronic swelling but particularly the patients with
swelling related to surgery and irradiation damage.
How quickly should
I refer?
Early treatment is more effective in preventing chronic changes therefore
always refer sooner rather than later to ensure the best outcome for your
patients.
Elaine Peace, Clinical Nurse Specialist in Palliative Care
Palliative Nursing
The editorial by Kate White “Increased Medicalisation within Palliative Care” questions the return to disease-centred care. This involves an aggressive interventionist approach veering away from the holistic management of the early development in the hospice movement. Echoing this theme, Skilbeck et al in a research study “Nurses’ Perception of Specialist Palliative Care in an Acute Hospital” looked at the planning of in-patient specialised palliative care in a hospital with a patient population of 1,200.
Nurses were asked to identify patients with a prognosis of less than 6 months in need of palliative care and who would benefit from a specialist palliative care unit. 5% of the hospital population satisfied these criteria. A significant group was identified, amounting to 35% of non-cancer patients (chronic heart disease, renal failure and lung disease),who were in need of specialist palliative care. 33% who were seen as suitable for care in a specialist palliative care unit had been admitted due to an assessed acute reason or when no definite diagnosis had been made. Half of those identified had been admitted from home via GP or A & E. If a specialist palliative care unit had been available some may have been directly or more appropriately admitted there.
Also highlighted were the number not receiving specialist palliative care who were successfully managed in the acute ward setting. A specialist unit should be seen as a support/resource for link nurses in the acute setting. It should not preclude advances in care in the community but could speed planned discharge. The study identifies the diversity in individual patient needs and raises the requirement to educate nurses in the palliative care needs of non-cancer patients. It also questions the accuracy of assessing patient needs and concludes that guidelines for direct or indirect admission to a specialist palliative care unit should be developed. A further article “Palliative Care: a two-tier system?” by Barbara Dicks pursues the fact that palliative care has concentrated on people with cancer while 75% of the population die from other causes.
International Journal of Palliative Nursing Vol. 5 No. 3 May - June 1999
Christine Gray, Clinical Nurse Specialist Palliative Care
Patients suffering from cancer tend to encounter a large number of health care professionals during their cancer journey. This can lead to differing clinical approaches to problems and difficulties with communication, the results being poor continuity of care and confusion for the patient.
This interesting study, carried out in Lothian, looked at the number of doctors (general practitioners, doctors in hospital wards and out-patient clinics and hospice doctors) encountered by 50 patients during their period of cancer care. This was established both by interviewing the patients and examining their hospital/hospice records. The number of doctors met varied from a minimum of 13 to a maximum of 97 (median 32) over a period ranging from 4 months to 26 years (median 2 years and 4 months). The authors acknowledge that the figures probably underestimate the actual number of doctors met. The patients were also asked what they remembered about doctors they had met and the effect that they had upon them. The main issues that emerged, both positive and negative, were continuity of care, attitude of the doctor, the way bad news was broken, information and explanation, honesty in sharing information, and prompt or delayed specialist referral.
The number of doctors encountered by patients with cancer is, in some cases, considerable. Add to this the number of nurses and other health professionals that are involved in the care of such patients and it becomes obvious why confusion and communication problems can arise. The figures illustrate the importance of having a key person who can co-ordinate the care of patients who have cancer and ensure that such patients have an appropriate understanding of what is happening to them. The patient’s general practitioner and/or district nurse would seem to me to be in the best position to undertake this role.
Smith SDM, Nicol KM, Devereux J, Cornbleet MA. Encounters with doctors: quantity and quality. Palliative Medicine 1999; 13: 217-223
Paul Cormie, Macmillan GP Facilitator
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