Haematology & Bone Marrow Transplant

RCN Haematology and Bone Marrow Transplant Nursing Forum Summer 2008

Contents 2–4 Spotlight on education l Steering Committee Education Event! l Bridget Stovold on what every haematology nurse should know about clinical trials l East of Scotland Haematology Nurses Annual Conference l Courses 5

Jan Green and Liz Pirie got politically involved



Here’s why: their briefing paper on nurses authorising blood component transfusion

6

Food for thought: Nicky Morgan makes the case for palliative care in haematology



Comings and goings



Draft competencies: your comments please!

NEWS www.rcn.org.uk/haematology

It is inevitable at times for us to have to break bad news to our patients. How that is done requires skill, confidence and an array of communication skills. This synopsis* by MIRIAM ATKINSON provides some helpful guidelines on best practice in a very sensitive and emotional part of haematology nursing.

best practice guidelines

How to break news of a patient’s death to unrelated stem cell donors The mortality rate for patients undergoing stem cell transplantation from an unrelated donor is approximately 30–35 per cent, according to the International BMT Registry. Since most donors in the Welsh Bone Marrow Donor Registry (WBMDR) choose to receive news of the patient’s progress, it follows that this could result in the receipt of bad news. The aim of our study was to identify the most appropriate method of breaking bad news so that we could establish best practice guidelines.

Further information Send contributions for the next newsletter by 21 November 2008 to the Editor: Marvelle Brown Email: [email protected]

Historically, letters were sent prior to changes in the WBMDR team which established the role of Stem Cell Donor Manager undertaken by a senior nurse and employing a team of clerical co-ordinators to handle administrative work. In this study donors were interviewed regarding their experiences of receiving bad news about the recipient of their stem cell donation. Did they prefer communication by a letter, telephone or a visit? A key aspect of psychological support to donors Buckman (1992) defines bad news as “any

news which drastically and negatively alters a person’s view”. The depth of feelings experienced by unrelated stem cell donors on hearing bad news regarding the recipient of their donation should not be underestimated. Donors may express shock, sadness, disappointment or guilt. They may need to ask questions in order to Breaking understand. They may feel bad news is an sympathy for the patient’s experience that can be recalled for a family and have thoughts long time by both also of their own family the recipient and and their own mortality. the bearer of the There should finally be a bad news degree of acceptance. Finlay and

‘

’

Dallimore, 1991 The study identified the need for excellent communication and counselling skills such as actively listening, empathic responses, sensitively answering questions and, finally, summarising.

Breaking bad news should be commenced CONTINUED ON PAGE FOUR

Haematology & Bone Marrow Transplant News

SPOTLIGHT ON EDUC ATION Coming this autumn ...

Steering Committee Education Event! Next stop, London ... 21 November at RCN headquarters in Cavendish Square. Join us for lunch at 12.30pm with the afternoon session starting at 1.30pm on: l update on transfusion administration l supporting marrow donors l managing clients with sickle cell disease, taking into account the new adult standards. Details from: [email protected]

Forum bursary – you can’t afford to miss it! Funding for attending study days and conferences is becoming increasingly difficult, but the dynamic changes and developments happening in haematology and marrow transplantation make it is more important than ever to keep updated. The steering committee has a bursary available for nurses who are forum members and who want to attend a relevant study day or conference. If you would like more information, then contact the Editor at: [email protected] 2

BRIDGET STOVOLD has adapted this overview of clinical research trials from a presentation given to a group of haematology nurses who primarily worked in the ward environment and who had limited experience of clinical trials. Here she provides a brief review of the process, including the regulations in place to protect the client, and examines some of the implications for nurses.

What every haematology nurse should know about clinical trials By definition, a clinical trial is the only evidence-based method of deciding whether a new approach to treatment or care is better than the current standard. Why are clinical trials needed? Clinical trials are used to: l try out new forms of treatment such as surgery, radiotherapy or chemotherapy l control symptoms such as pain or nausea and vomiting l test the effectiveness of a psychological therapy l improve survival l relieve symptoms or side effects l improve quality of life l add to current knowledge about the effectiveness of treatment. What are the different types of clinical trials? All drugs are initially tested in the laboratory and on animals.  hase 1 trials nP As the name suggests these are the first studies conducted in humans. They are carried out on small groups of healthy volunteers or patients with diseases such as cancer. They are generally carried out in specialist research units or specialist hospitals. The focus is on safety, not cure or treatment – for example, on how much of a drug can be given without causing side effects and how the drug is metabolised in the body.  hase 2 trials nP After the safety of drugs has been studied, they are then given to groups

of patients with a certain condition with the aim of establishing efficacy on different dosages, frequency given and routes of administration. Phase 2 trials may provide additional information on safety. They may or may not be randomised.  hase 3 trials nP These are large trials involving hundreds or thousands of patients from different hospitals and even different countries. They seek to compare a new drug with existing treatments or interventions which are known to be effective, and also measure disease-free survival and quality of life. They are always randomised. n Phase 4 trials These are trials which take place after a drug has been approved for marketing. They usually take the form of surveys with the aim of monitoring long term risks and benefits, rare side effects and finding out the effectiveness when the drug is more widely used.  verviews and meta-analyses nO These do not involve more patients, but use information and data gained from previous trials. They are analyses that bring together the results of a large number of similar trials. They may clarify the true value of treatment and may identify areas that need further study. What regulations are in place to protect clients/patients? A number of regulations have been introduced to protect the subjects

Royal College of Nursing

following previous unethical trials – for example, the infamous “Tuskegee Study of Untreated Syphilis in the Negro Male” and the atrocities committed by the Nazis during World War II – as well as drugs such as Thalidomide which came to the market without being fully research. These regulations include:  he Nuremberg Code 1947 nT A set of research ethics containing 10 principles which originated in response to Nazi human experimentation. It covers issues such as informed consent, absence of coercion and properly formulated experiments, and protects the subjects from harm.

What are the important issues for ward nurses?  ood communication nG These skills are vital. n Informed consent Informed consent is “an ongoing agreement by a person to receive treatment, undergo a procedure or participate in research after risks, benefits and alternatives have been adequately explained to them” (RCN, 2005).

For informed consent to take place, information must be provided both verbally and in writing regarding: l the purpose of research  eclaration of Helsinki 1964 nD l practicalities of procedures involved (amended in 1975, 1983, 1989, 1996, l benefits, risks and, if appropriate, 2000 and 2001) alternatives A set of ethical principles for the l how data about them will be used medical community regarding l insurance indemnity arrangements human research. The basic principle l how information will be provided to is respect for individuals, their rights them to self determination and the right to l contact details. make informed decisions regarding There should be understanding about participation. The subject’s welfare must their role and they should know that take precedent over the interests of they can withdraw from the trial at science and society. any time without giving a reason and without compromising future treatment. n I CH – International Conference on Harmonisation of Technical There must be no coercion – Requirements for Registration of participation must be voluntary. Pharmaceuticals for Human Use A project that brings together regulatory Where possible they should be given authorities and pharmaceutical time for assimilation and further experts from Europe, Japan and the questions – “time to think” and to USA. The purpose is to achieve greater discuss with family and friends. If asked, collaboration during development and nurses should try to be factual and research of a drug while maintaining avoid giving personal views which may safeguards on quality, safety and influence a patient. efficacy. There are special cases regarding G  CP – Good Clinical Practice informed consent. Children and young n International standards provided by people can give consent if they are ICH. Guidelines include protection of “Gillick Competent” – that is, able to human rights as a subject of clinical understand the nature and consequences trials. This also includes standards of participation. Otherwise the parent or on how trials are conducted, and guardian consents on their behalf. Other defines the roles and responsibilities of exceptions include people with mental everyone involved. incapacity and incapacitated adults (for example, unconscious or unresponsive  U Directive 2001/20E nE patients). This took effect from May 2004 and ratifies ICH and GCP across all member n Serious adverse events states. It covers all aspects of clinical An SAE is any “untoward” medical research trials. occurrence at any dose that results

in death, is life threatening, requires hospitalisation or prolongs existing hospitalisation, results in persistent or significant disability or incapacity, or causes congenital abnormality or birth defect (including miscarriage). Any SAE should be reported to the research nurse as soon as possible. n Insurance/compensation Who is insured? Drug companies are insured so that if a patient is damaged by some unforeseen event owing to their drug, compensation can be claimed. It is rare for patients to be harmed although side effects can be unpleasant. Similarly, NHS trusts are insured against damage caused by local studies – research ethics committees would refuse approval for trials where there was no insurance. The Department of Health and the Medical Research Council do not have this kind of insurance, but funds are available so that a payment could be made if something went wrong.  ocumentation nD Good documentation and record keeping are essential – it makes life easier for research staff. Medical records need to be retained for a specified period of time. Sites (hospitals) are inspected and audited. Useful websites www.ncrn.org.uk The National Cancer Research Network provides the NHS with the infrastructure to support cancer clinical trials in England. www.icr.ac.uk The Institute of Cancer Research is one of the world’s leading cancer research organisations and internationally renowned for the quality of its science. www.cancerresearchuk.org Cancer Research UK is the world’s leading charity dedicated to research on the causes, treatment and prevention of cancer. Bridget Stovold is Clinical Nurse Specialist in Haematology, currently undertaking the BSc (Hons) Professional Practice in Haematology at Thames Valley University.

3

Royal College of Nursing

CONTINUED FROM PAGE ONE

with a “warning shot” such as “I’m afraid I have bad news” or “I’m afraid the news is not good.” (Faulkner, 1994) Bad news should be broken “gently and slowly” (Maguire and Faulkner, 1993). Haematology Nurses

2nd Annual Conference Saturday, 15 November 2008 Ninewells Hospital, Dundee This free event from East of Scotland Haematology Nurses Group will include: l Evolving treatments in hematological malignancies: David Meiklejohn  l Chronic leukaemias: John Davies  l Presentation by Marvelle Brown PLUS, your choice of two workshops: blood transfusion, clinical trials, cord blood transplant or chemotherapy side effects. East or west of Scotland and north or south of the border, all haematology nurses welcome! For information and application form, visit: www.haematologynurses.co.uk

COURSES From Birmingham City University l Haematology/oncology courses start in September – contact [email protected] From Thames Valley University l Certificate in Professional and Personal Development (CPPD) in Advanced Management of Clients with Sickle Cell Disease, Thalassaemia and Related Conditions starts March 2009 l CPPD in Clinical Haematology starts October l BSc (Hons) Professional Practice in Clinical Haematology starts October and January. Contact: [email protected]

Theories of grief Health care professionals need an understanding of the normal grieving process to provide appropriate support. There are several theories of grief around – for example, Lindemann (1944), Kubler Ross (1969), Bowlby, (1980) and Worden (1991). Each individual will have a unique reaction to the receipt of bad news. Undertaking this difficult task raises anxiety levels in health care professionals (Morton et al., 2000) and it is essential to support staff by recognising increased stress levels. Yet few health care professionals receive specific training in breaking bad news. Farrell (2002) identified the need for creating a programme to raise awareness of the issues involved and improve clinical practice. Best practice guidelines in breaking bad news WBMDR best practice guidelines can be divided into three sections: preparation, delivery and assessment. Preparation aims to minimise the shock by the sensitive use of language, a call from a quiet environment. Delivery includes providing the “warning shot”, slowly introducing news and carefully choosing words. Assessment covers assessing the individual, continuing support and offering options to follow up the news such as a second telephone call later in week or a visit if considered necessary – with the option of a letter to bring closure. It may not be known what other factors a donor is experiencing such as stresses in work or personal relationships, ill health in their own family or, indeed, personal grief or loss. Therefore this news could add additional emotional pressure. Although this would be a rare occurrence, the donor should be referred

to a bereavement agency if necessary. After reassuring and thanking the donor, the health care professional has the task of leading the donor towards a degree of acceptance. There is never a right time or an easy way The attributes of honesty, sensitivity and compassion will assist in Bad news needs this task. It is to be delivered in the health care a straightforward, honest and professional’s compassionate responsibility manner to ensure the Kim and Alvi, 1999 recipient of bad news has understood (Department of Health, 2001).

‘

’

Recommendations l Continuity of care l Building a relationship of trust l Assessment of individuals l Training in counselling l Staff support. Increasingly higher risk patients are being treated with stem cell transplantation, escalating the risk of People always mortality, and remember having this means the been given bad need to break news, no matter bad news will how well it is rise. If the task delivered is undertaken McCulloch, 2004 well, it can assist understanding and promote a level of acceptance.

‘

’

Having excellent counselling skills and attributes of consideration, sensitivity and honesty can improve clinical practice and quality of service. The quality of practice should be assessed, monitored and reviewed at regular intervals. Miriam Atkinson is a Stem Cell Donor Manager in the Welsh Bone Marrow Donor Registry and a member of the RCN Haematology/BMT Forum Steering Committee. * This article is adapted from Atkinson M (2005) Communicating news of patients’ deaths to unrelated stem cell donors, Nursing Standard, 19(32), pp.41–47, where you will also find all references.

4

Haematology & Bone Marrow Transplant News

Welcome to the summer edition of Haematology/BMT News It has been quite a busy period for the steering committee, working on the draft of the haematology nursing competencies, organising education events and working on updating the forum website. We hope you enjoy this edition which is packed with news, educational topics on clinical trials (page two), features on the difficulties with palliative care in haematology (page six) and some tips on breaking bad news (page one).

And remember, this is your newsletter and it would be great to hear from you on issues in haematology and marrow transplantation that are especially important to you. If there is a particular topic you would like the steering committee to write about, do get in touch with me at [email protected] . Or why not write a feature yourself! Marvelle Brown, Editor

JAN GREEN gives us an insight into a flagship programme from the RCN.

individuals and listening to motivated speakers showed us how important it is to be persistent in getting what we wanted out of people in order to change policy at the highest levels.

Getting politically involved Liz Pirie, Transfusion Nurse Specialist at the Scottish National Blood Transfusion Service, and I were fortunate to be selected to attend the RCN Political Leadership Programme 2007 as representatives of, respectively, the Blood Transfusion Forum and the Haematology and BMT Forum. We decided to use the course to help us take forward the issue of nurses being able to prescribe blood components. The aim of the Political Leadership Programme is to: l develop the political know-how and governance responsibilities of health care professionals l clarify which issues to influence on l develop and action strategies that will have an impact l shape and influence health and social policy. The PLP consisted of six days of faceto-face interaction, discussion and presentations. We were encouraged to use the programme as a tool for reflection for personal growth and development rather than specifically taking individual policy issues forward. However, the ideas presented to us helped us focus on our own objectives very clearly so that we had a vision of where we were going and how we were going to get there.

5

Is this right for you? I would recommend this programme to anyone who has a pressing issue they wish to take forward as it helped me develop the political awareness required in this respect. It encouraged me to hone

and focus on achievable outcomes, and showed me how to lobby by learning how to find the people who matter. I was able to develop networking skills and I understand now that sometimes it’s not what you know, but who you know and how to get to those who matter. In developing my communication skills I needed to ensure I was getting the sound-bites right which can be difficult for me at times. Being with other like-minded

I also learned that anything that requires more than one person’s input takes time and the timeframe increases exponentially with the more people who are involved. So our project may take at least another year before agreement is reached and a framework outlining the requirements for safe practice are agreed and written (see update below on the briefing paper). Jan Green is Transfusion Liaison Nurse with NHS Blood and Transplant (NHSBT) and a member of the RCN Haematology/ BMT Forum Steering Committee.

update

Nurses authorising blood component transfusion A briefing paper has been issued to provide an update on a collaborative project between NHS Blood and Transplant (NHSBT) and the Scottish National Blood Transfusion Service (SNBTS) which is investigating the feasibility of nurses prescribing blood. The legal situation has been clarified and there are no legal barriers to appropriately trained competent registered practitioners (for example, nurses) ordering, authorising and administering blood. As with all role development however, this will only be suitable for nurses with the relevant experience and working within the appropriate clinical area.

A number of issues will need to be taken into consideration and it is planned to set up a multidisciplinary consultation group to develop a framework which will allow nurses who undertake this role to practice safely. A workshop will take place on Friday, 17 October 2008, at the NBS Donor Centre, 65 New Street in Birmingham, to discuss how to take this forward. Contact either Liz Pirie at: [email protected] or Jan Green at: [email protected] to see full briefing paper or if you would like more information regarding this initiative.

Royal College of Nursing

F ood fo r thought . . . NICKY MORGAN explains why palliative care is not at odds with what we as clinicians are trying to achieve for our patients.

The case for palliative care in haematology There was a great shift in thinking in haematology management when the National Institute of health and Clinical Excellence (NICE, 2004) stated that: “Adequate palliative care is important to maximise quality of life, and there should be effective integration between palliative care and haemato-oncology services throughout the patient’s illness, not just when it is acknowledged that the terminal phase has been reached.” However, McGrath and Holewa’s (2007) review of literature strongly suggests that palliative care is not integrated adequately into adult haematology care. The question to ask is: why? What are

COMINGS AND GOINGS Joining us ... A great welcome to Tracey Burgoyne who has joined the forum steering committee. Tracey is a Senior Lecturer at Birmingham City University and brings a wealth of experience in paediatric and adult oncology and haematology. Tracey is programme leader for courses in paediatric and adult oncology/ haematology.

Leaving us ... Shirley Foster, the National Forum Organiser who has been looking after the Haematology/BMT Forum for several years, will be taking up a new post in the RCN from September. Shirley has been a great support to the forum, and her cheerful and professional manner will be missed. We wish her well in her new post.

the barriers to timely intervention of palliative care in haematology? Integration is patchy across the country. Where palliative care is integrated it works extremely well, but many would argue that currently this tends to be the exception rather than the rule. By definition ... One key barrier could be attitudes about what palliative care actually is. Historically, palliative care has been associated with care of the dying or otherwise known as “end of life care”. However, palliative care is fundamentally about symptom management and the expertise within the specialism can be crucial in supporting the care haematology nurses are providing to the patient. Another barrier particularly for clinicians can be a sense of failure as

Draft competencies: your comments please! The steering committee has started work on drafting competencies for adult haematology nursing. We aim to have the draft completed by September and would welcome nurses interested in commenting on this document as part of the consultation process. If you would like to take part, contact the Editor at: [email protected]

sometimes it is more likely that the side effects and complications of treatment can lead to death than the advancement of the illness. The palliative care team should become familiar faces to the patient and their families, and used as a liaison and means of support on a number of levels – physical, emotional, psychological, social and even spiritual. This should be standard practice at any given phase or period of the patient’s illness, regardless of their prognosis.

’

Nicky Morgan is a staff McGrath and nurse who is currently Holewa, 2007 completing the Certificate in Professional and Personal Development in Clinical Haematology at Thames Valley University. Let us know what are your experiences in palliative care in haematology. Send your comments to the Editor at [email protected]

References McGrath P and Holewa H (2007) Description of an Australian model for end of life care in patients with haematological malignancies, Oncology Nursing Forum, 34(1), pp.39–47. National Institute for health and Clinical Excellence (NICE) (2004) Guidance on Cancer Services: Improving Outcomes in Haematological Cancers – the manual, pp.100–105.

This newsletter is published by the Royal College of Nursing, 20 Cavendish Square, London W1G 0RN. Tel: 0845 772 6100 Website: www.rcn.org.uk

‘

Dying is something we cannot ignore and the suffering that accompanies it cannot be treated within a biomedical framework ... Dying is the most significant time in any person’s life. Its meaning may be lost within a system that has its solitary goal the need to preserve life. In such a system, the drive to prolong life can become so deeply entrenched that it takes precedence over matters of the soul, casting a pall over those who are dying.

For details of forthcoming go to

RCNEVENTS

www.rcn.org.uk/events

The RCN represents nurses and nursing, promotes excellence in practice and shapes health policies

6