Method of the full review Identification of studies
Chapter 3 The size of the problem
Introduction
Failures in DNACPR policy, and gaps between policy and practice, are likely to lead to adverse
consequences for patients and their families. Our previous systematic review of lay press reports (covering 1 January to 30 June 2010) sought primarily to examine the epidemiology and outcome from press reports of attempted resuscitation.103The study found DNACPR to be one of eight resuscitation-related themes.
Review of these cases includes examples of patient stories in which resuscitation was either withheld (without discussion) or provided (when the patient had expressly declined CPR). More recently, the Court of Appeal judgement in the case of Janet Tracey104has highlighted the potential harm to, as well as the
infringement of the rights of, patients and families, from the failure of health-care professionals to discuss DNACPR decisions. The National Confidential Enquiry into Patient Outcome and Death (NCEPOD)‘Time to Intervene?’report identified a range of cases in which patients had potentially been harmed as a result of inappropriate or lack of DNACPR decision-making.105This work package sought to assess the extent of
adverse consequences relating to DNACPR decisions as an indication of the extent of the problem with current DNACPR policy and practice.
Methods
Following our initial stakeholder meeting, we expanded our proposed sources of information for this study to include the following sources of data:
l NHS trusts (record of incidents, complaints and Ombudsman investigations)
l National Reporting and Learning System (NRLS) patient safety incident reports
l coroners’Rule 43 reports
l Parliamentary and Health Service Ombudsman investigation reports
l NHS Litigation Authority
l Compassion in Dying’s End-of-Life Rights Information Line. NHS trusts
Individual NHS trusts have local policies and processes for recording patient safety incidents and patient complaints based on the National Patient Safety Agency Reporting Framework.106Incidents are usually
identified and investigated by the NHS organisation involved. There are two tiers of classification, incidents and serious incidents, defined as follows:
l Incident: an event or circumstance which could have resulted in, or did result in, unnecessary damage, loss or harm such as physical or mental injury to a patient, staff, visitors or members of the public.
l Serious incident: an incident that occurred in relation to NHS-funded services and care resulting in one of the following:
¢ unexpected or avoidable death of one or more patients, staff, visitors or members of the public
¢ serious harm to one or more patients, staff, visitors or members of the public or where the outcome requires life-saving intervention and major surgical/medical intervention, or results in permanent harm or shortened life expectancy or in prolonged pain or psychological harm (includes incidents graded under the National Patient Safety Agency’s definition of severe harm).
We sought to identify the frequency of incidents, serious incidents, complaints and Ombudsman
investigations from NHS trusts. Using the NHS service directory, we obtained care trust lists and identified a random sample of 60 NHS trusts (47 acute hospital trusts, eight community trusts and four ambulance trusts). Freedom of information (FOI) requests were sent to all trusts in the sample, seeking information on:
l how many incidents, serious untoward incidents and Ombudsman investigations the trust had in the period April 2010–April 2012
l how may incidents, serious untoward incidents, complaints and Ombudsman investigations were related to DNAR/DNACPR decisions over this time frame
l a summary of the investigation findings and any recommendations for practice/change in policy that occurred as a consequence.
National Reporting and Learning System
The NRLS is part of the NHS Commissioning Board Special Health Authority and receives confidential reports on patient safety incidents from health-care staff and organisations across the UK. The reports are analysed to identify common risks to patients and opportunities to improve patient safety (www.nrls.npsa. nhs.uk/). The NRLS publishes summary reports annually. We requested a data search from NRLS for the period 1 January 2010–31 December 2012 with the following parameters:
l total number of incidents in the period and number of incidents that include DNACPR
l DNACPR incidents by organisation type (acute hospital trust, community trust, ambulance trust)
l severity grading of DNACPR incidents, compared with severity grading of all incidents
l DNACPR incidents by clinical specialty.
To identify reports relating to DNACPR, the following search terms were used:‘dnacpr’, or’dnar’, or’dnr’, or (‘resus’or‘cpr’), and (‘not attempt’, or‘do not resus’).
Coroners’Rule 43 reports
Coroners investigate deaths that have been reported to them if they have reason to think that the death was violent or unnatural or if the cause of death is unknown, or if the deceased died while in prison, police custody or another type of state detention such as an immigration centre or while detained under the Mental Health Act 1983.107,108
The Coroners (Amendment) Rules 2008109amended Rule 43 of the Coroners Rules 1984110with effect
from 17 July 2008 and require that if inquest evidence suggests that there might be a risk of future deaths and action is needed to prevent recurrence, the coroner must prepare a report under Rule 43 which suggests actions to prevent future deaths. These reports can be served to all involved or to those with an interest in the incident and requires a response by the recipients stating whether or not the suggested actions will be taken and, if not, indicating the reason why. The response must be received within 56 days of notification. Rule 43 notices and responses were reported to the Lord Chancellor, who produced a biannual summary of Rule 43 notices.111
The Coroners and Justice Act 2009112saw changes to the reporting process which came into force in
July 2013.108These changes altered the terminology used from‘Rule 43 reports’to‘Prevention of Future
Death reports’. Reports are now sent to the Chief Coroner, who produces a written summary on the Judiciary website at www.judiciary.gov.uk.
Summary reports of Rule 43 and Prevention of Future Death reports were accessed via the Ministry of Justice111and the Chief Coroner’s Office.113We extended our initial plans of reviewing Rule 43 notices
Parliamentary and Health Service Ombudsman investigation reports
The role of the Parliamentary and Health Service Ombudsman is to investigate complaints that individuals have been treated unfairly or have received poor service from the NHS in England. The legal authority and responsibilities of the Ombudsman are mainly drawn from the Health Service Commissioners Act of 1993.114Reports on examples of individual or systemic failures of service are published on the Parliamentary
and Health Service Ombudsman website (www.ombudsman.org.uk/reports-and-consultations/reports). We submitted a FOI request to the Parliamentary and Health Service Ombudsman’s office for details of any complaints the health services Ombudsman had received between 2008 and 2013 relating to DNACPR, DNAR or‘AND’orders.
Compassion in Dying’s End-of-Life Rights Information Line
Compassion in Dying is a national charity that supports people at the end of life to have what they consider to be a good death by providing advice and information about their rights and choices. The charity runs a free telephone helpline, the End-of-Life Rights Information Line, which is available during office hours to the general public. The majority of calls and e-mails are received from individuals who are currently‘well’but want to plan for their future. However, patients about to go into hospital for treatment, carers, solicitors and health- and social-care professionals also make regular contact. The Information Line has in place a system for monitoring the number of calls they receive, the initial reason given for the call, other topics discussed and the type of caller. One of the conversation topics recorded on their monitoring form is DNACPR. The Information Line team enters the data from their monitoring form into a spreadsheet. For this study the team recorded additional entries for each call during which topics related to DNACPR were discussed. The topic list for the recording spreadsheet was developed by the research team based on a summary of the issues raised in a sample of 10 consecutive calls in which DNACPR had been mentioned; evidence from the literature; and the experience of the study team regarding DNACPR and qualitative methodology. The agreed list of topics was added to the telephone line data collection spreadsheet and the collected data were reviewed at regular intervals by members of the study team and the person responsible for the telephone line service at Compassion in Dying. At 4 months the topics were reviewed and minor adjustments were made to refine the topics. The data collection took place from November 2013 to June 2014.
The Information Line team provided the research team with a summary of the number of calls:
l during the period of data collection
l during which DNAR was raised
l during which each topic related to DNAR was raised.