Professional Reference articles are designed for health professionals to use. They are written by UK doctors and based on research evidence, UK and European Guidelines. You may find the End of Life Care article more useful, or one of our other health articles.
Treatment of almost all medical conditions has been affected by the COVID-19 pandemic. NICE has issued rapid update guidelines in relation to many of these. This guidance is changing frequently. Please visit https://www.nice.org.uk/covid-19 to see if there is temporary guidance issued by NICE in relation to the management of this condition, which may vary from the information given below.
Breaking bad news
- Helping patients to face death begins at the point of diagnosis. In the not too distant past, it was the norm to keep patients in ignorance of a poor prognosis. Most clinicians would now agree that patients should be given as much information as possible, balancing truthfulness against psychological harm. In this age of patient autonomy, it is indeed unethical not to involve patients in decisions about their care. One American study concludes that it is the patient's right to decide how they want to exercise their autonomy and suggests practical ways in which this could be achieved (eg, establishing the patient's views on disclosure at the investigatory stage). Some patients may have gone as far as advance care planning covering issues such as information sharing.
- A good approach is to find out how much the patient already knows or has guessed (you may be surprised!). Ask what they would like to know; then answer honestly. Do not forget the significant minority who may want little or no information. Patient autonomy includes the right not to know, as much as the right to be given the facts.
- Before breaking bad news, imagine what it would be like to be told that news yourself. This will help you treat the patient empathetically and enable you metaphorically to sit beside them rather than confront them. Breaking bad news takes time. Be prepared to make space for patients who may be distressed, surprised or shocked by the information you give them.
- Arrange an early follow-up. Once the news has been conveyed, it is unlikely that the patient will be in much of a state to think logically about further questions he or she would like to ask.
- Recognise your own feelings. If you feel upset by the consultation, arrange a debriefing with a sympathetic colleague.
The Five Stages of Grief
This concept (originally called 'The Five Stages of Receiving Catastrophic News') was propounded by Swiss-born psychiatrist Dr Elisabeth Kübler-Ross.
The five stages are:
- Denial - "It can't be happening." The initial stage of shock and numbness.
- Anger - "Why me?" Anger may be internalised or externalised against the clinician and may be very difficult to deal with. It is, however, a mechanism for dealing with anxiety and pain.
- Bargaining - "Just let me live to see my grandchild born."
- Depression - "God please don't take me away from my family."
- Acceptance- a state in which there may be an intense longing for death.
Kübler-Ross's concepts arose from many hours of interviewing dying patients but her one size fits all theories have subsequently been criticised as being too neat for general application. However, at a time when talking to patients about cancer was thought of as taboo, she did promote the idea that giving the dying patient an opportunity to voice their emotions was a positive and helpful approach.
Knowing when to treat depression with antidepressants is difficult in patients who may experience early morning waking, loss of appetite and physical illness but clinicians are advised to watch for morbid thoughts such as undue guilt, low self-esteem and inability to feel pleasure (anhedonia). At the time of diagnosis, approximately 50% of all patients experience anxiety and depression severe enough to affect their quality of life. In the subsequent 12 months, 1 in 10 people will develop psychological symptoms severe enough to warrant specialist intervention.
The National Institute for Health and Care Excellence (NICE) has proposed a four-level model of professional psychological assessment and intervention.
The following issues need to be considered:
- The patient's social support network and the need for additional input where there is a lack of relatives or friends available to give support.
- Personal care (eg, toileting and bathing needs) for patients.
- Financial issues and access to local and national resources.
- Respite care.
Spiritual needs in this context often involve questions about fate, the purpose of life and the existence of a higher power or being. The spiritual needs of the patient do not necessarily need to be delivered within the framework of an organised religion but, if the patient wishes it, it is the healthcare team's responsibility to arrange access to the appropriate faith leader or spiritual guide. All members of the healthcare team should be aware of the patient's spiritual requirements and bear in mind that their needs may change with time.
Support for carers
The needs of carers and families should not be forgotten and this will include the provision of information, financial advice and bereavement care. With the consent of the patient, if appropriate, carers and relatives should be kept fully informed. Carers and relatives can be vital allies in the provision of end of life care to the patient and they should be enabled and empowered to perform this role. Moreover, one study found that the husbands of women with terminal cancer were more likely to have feelings of guilt or regret if they did not have end of life discussions with their wife than those who did.
Catering for the needs of patients who face death may at first sight appear overwhelming but no individual healthcare worker should attempt this task alone. Support is best provided in integrated teams and there are many guidelines and strategies to enable local services to co-ordinate care. These include:
- The Gold Standards Framework Programme England.
- The End of Life Care Programme (EoLCP) released by the Department of Health.
Elisabeth Kübler-Ross's work sowed the seed of a vast palliative and end of life care network which has built upon her principles of communicating and supporting dying patients and their families. Both the hospice system and the Macmillan nursing service have developed from such principles. Organisations currently providing services, information and support include:
- The National Council for Palliative Care - the umbrella organisation for all those who are involved in providing, commissioning and using palliative care and hospice services in England, Wales and Northern Ireland.
- Macmillan Cancer Support - an organisation which gives cancer patients and their families the up-to-date information, practical advice and support they need to reduce the fear and uncertainty of cancer.
- Marie Curie Cancer Care - a charity established in 1948 which supports Marie Curie nurses, hospice research and information for the general public.
Further reading and references
Matters of Life and Death; Gold Standards Framework, August 2012
Living with Dying; Healthtalkonline
McCabe MS, Wood WA, Goldberg RM; When the family requests withholding the diagnosis: who owns the truth? J Oncol Pract. 2010 Mar6(2):94-6.
Ozanne EM, Partridge A, Moy B, et al; Doctor-patient communication about advance directives in metastatic breast cancer. J Palliat Med. 2009 Jun12(6):547-53.
Newman, L; Elisabeth Kübler-Ross (2004). British Medical Journal, 2004:329 (7466), 627.
Improving supportive and palliative care for adults with cancer; NICE Cancer Service Guideline, March 2004
Candy B, Jones L, Drake R, et al; Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011 Jun 15(6):CD007617.
Jonasson JM, Hauksdottir A, Nemes S, et al; Couples' communication before the wife's death to cancer and the widower's feelings of guilt or regret after the loss - a population-based investigation. Eur J Cancer. 2011 Jul47(10):1564-70. Epub 2011 Feb 18.
Variations in Place of Death in England; National End of Life Care Intelligence Network