 |  |  | | | Best Practice Guidelines in Breaking News of Patients' Deaths to Unrelated Stem Cell Donors by the Welsh Bone Marrow Donor Registry | | | | |
| |  | | Being a stem cell donor not only involves hospital admission and physical procedure, but brings emotional considerations, not least because the donor and recipient remain anonymous with a limited knowledge of each other. This factsheet focusses on the donor who may receive news about recipient unsuccessful recovery from their disease following attempts for stem cell transplant
 | Author biography |
|  | | Miriam Atkinson, RGN. Diploma in Professional Practice, Post Graduate Certificate in Counselling, qualified in 1986 from Bristol and Weston School of Nursing. Following general surgical and medical experience, she specialised in Bone Marrow Transplantation and Acute Haematology – gaining 15 years experience in University Hospital of Wales, Cardiff. Miriam gained the Diploma in Professional Practice in 2002. In the same year she took up post as Stem Cell Donor Manager in the Welsh Bone Marrow Donor Registry. She is clinically responsible for a caseload of voluntary, unrelated stem cell donors – involving counselling, consenting, supporting, harvesting and clinical follow up. In 2003 she gained a Post Graduate Certificate in Counselling. Later that year her abstract on communicating news of patients’ deaths to stem cell donors was selected as best abstract in a donor setting and presented at the International conference at the National Marrow Donor Program, Minneapolis, USA. This study has also recently been published by the "Nursing Standard" 2005, (19, 32 pp 41–47). |
"Breaking bad news is an experience that can be recalled for a long time by both the recipient and the bearer of the bad news"( Finlay and Dallimore 1991)
 | The mortality rate for patients undergoing stem cell transplantation from an unrelated donor is approximately 40 – 50percent. |
| Most donors in WBMDR choose to receive news of the patient’s general progress. |
| It follows at times this could result in receipt of bad news. |
| The aim of the study was to identify the most appropriate method of breaking bad news. |
| Donors were interviewed regarding their experiences. |
| Was communication preferred through a letter, by telephone or a visit? |
| Breaking bad news is 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 receipt of bad news regarding the recipient of their donations, should not be undermined. |
| Donors express |
| Shock |
| Sadness |
| Disappointment |
| Guilt |
| The need to ask questions in order to understand |
| Sympathy for the patient’s family |
| Thoughts of their own family |
| Thoughts of their own mortality |
| A degree of acceptance |
| The need for excellent communication and counselling skills was identified. |
| Skills such as actively listening, responding with empathy, sensitively answering questions and finally summarising. |
"Bad news needs to be delivered in a straightforward, honest and compassionate manner" (Kim and Alvi, 1999)
| The breaking of bad news should be commenced with a "warning shot" such as "I’m afraid I have bad news", or "I’m afraid the news is not good" (Faulkener, 1994) |
| Bad news should be broken "gently and slowly" (Maguire and Faulkener, 1993) |
| Health care professionals need an understanding of the normal grieving process to provide appropriate support. |
| There are several theories of grief – including Lindemann 1944, Kubler Ross 1969, Bowlby 1980, Worden 1991. |
| Each individual has a unique reaction to the receipt of bad news. |
| Few health care professionals receive specific training on breaking bad news and Farrell, 2002 identified this need creating an education programme, raising awareness in the issues invovled and improving clinical practice. |
Undertaking this difficult task raises anxiety levels in health care professionals. Morton et al 2000.
| Staff support is essential – recognising increased stress levels. |
Best Practice Guidelines in Breaking Bad News in WBMDR
Best Practice Guidelines can be divided into 3 sections
| Preparation |
| Delivery |
| Assessment |
| Preparation – aims to minimise the shock, sensitive use of language, call from quiet environment. |
| Delivery – providing the “warning shot”, slowly introducing news, carefully choosing words. |
| Assessment - continuing support, offering options to follow up – such as a second telephone call later in the week, or a visit if considered necessary, letter to follow up bringing closure. |
| It may be unknown 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 and therefore this news could add additional emotional pressure. |
| If necessary referral to a Bereavement Agency, however, this would be a rare occurrence. |
| Following reassuring and thanking the donor the health care professional has the task of leading the donor towards a degree of acceptance. |
"People always remember having been given bad news, no matter how well it is delivered." (McCulloch, 2004)
| There is never going to be a right time or easy way to break bad news |
| The attributes of honesty, sensitivity and compassion assist the health care professional in this task |
| "It is the responsibility of the health care professional to ensure the recipient of bad news has understood." Department of Health 2001. |
Recommendations
| Continuity of care |
| Building a relationship of trust |
| Assessment of individuals |
| Counselling training |
| Staff Support |
Conclusion
| With the increase in numbers of high risk patients being treated with stem cell transplantation (SCT), escalating the risk of mortality, the unenviable task of breaking bad news will undoubtedly increase. |
| If the task is undertaken well it can assist understanding and promote a level of acceptance. |
| The use of excellent counselling skills and possession of qualities such as consideration, sensitivity and honesty in health care professionals can improve clinical practice and quality of service. |
| The quality of the practice of breaking bad news should be assessed, monitored and reviewed at regular intervals. |
References
Bowlby, J. (1980) Attachment and Loss Volume 3 Sadness and Depression London Penguin
Buckman, R. (1982) How to Break Bad News London Pan Books
Department of Health (2001) Manual of Cancer Services Standards London Do H.
Farrell, M (2002) Breaking bad news. In Shaw, T. and Sanders, K. (eds) Foundations of Nursing Studies Dissemination Series, Vol. 1, No. 2.
Faulkener, A et al (1994) Breaking bad news: a flow diagram. Palliative Medicine Vol. 8 145 – 151
Finlay, L. Dallimore D (1991) Your child is dead. British Medical Journal Vol. 302 1524 – 1525
Kim, M.K. Alvi, A (1999) Breaking bad news of cancer; the patient’s perspective. Part 1 Larygoscope 109: 1064-1067
Kubler-Ross, E. (1969) On Death and Dying New York NY, Springer
Lindemann, E. (1944) Symptomatology and management of acute grief. American Journal of Psychiatry 101, 3, 141 – 149
Maguire, P. Fualkener, A. (1993) Communicating with cancer patient handling bad news and difficult questions. In Dickenson D. Johnson M (eds) Death, Dying and Bereavement London Open University / Sage Publications
McCulloch, P (2004) The patient experience of receiving bad news from health professionals Professional Nurse Vol. 19, No. 5 276 – 280
Morton, J (2000) The European Donor Hospital Education Programme (EDHEP) Enhancing communication skills with bereaved relatives. Anaesthesia and Intensive Care Vol. 28 No 2 184 – 190
Worden, J. (1991) Grief Counselling and Grief Therapy London Tavistock Publications
The information for this factsheet has been composed by the author, whose main study was agreed and published in the Nursing Standard magazine ref: Atkinson, M. (2005) Communicating news of patients' deaths to unrelated stem cell donors. Nursing Standard 1, 32, 41 - 47
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