Care of people at the end of life falls under the question of whether services are effective - one of five key questions used by CQC inspectors. Key line of enquiry E1 asks: 'Do people, including those in the last 12 months of life, have their needs assessed and their care planned and delivered in line with evidence based guidance practice?’
Approximately half a million people die in England each year, two-thirds of whom are over 75 years old.1 This number will increase as our population ages.
GPs play a vital role in coordinating and overseeing patients’ end of life care, and caring for their loved ones after they have gone. Every person deserves good care at the end of their life. This means that people should be treated with dignity and respect and, where possible, in their preferred place of care. However, we do not always get it right: access to and quality of care for people at the end of life remains variable, especially for those with a non-cancer diagnosis.2
Although most people would prefer to die at home, over half are still dying in hospital.3 GPs are in the position of being able to identify when patients are at the end of their life and have the difficult but necessary conversations about death with them, building on their long-established trusting relationship with them and their families. How GP practices provide end of life care to their patients is likely to come up during a Care Quality Commission (CQC) inspection.
Defining end of life
People are considered to be approaching the end of life when they are likely to die within the next 12 months. This includes those with:
- Advanced, progressive, incurable conditions
- General frailty and co-existing conditions that mean they are expected to die within 12 months
- Existing conditions if they are at risk of dying from a sudden acute crisis in their condition
- Life-threatening acute conditions caused by sudden catastrophic events.4
Challenges in end-of-life care
In addition to physical symptoms such as pain, breathlessness, nausea and fatigue, those approaching the end of life may also experience anxiety, depression, and social and spiritual difficulties. Managing these complex issues well requires effective multidisciplinary working and information sharing between GPs, other generalists and specialist teams.
The most challenging decisions in end of life care are often about withdrawing or not starting a treatment when it has the potential to prolong the patient’s life. For GPs this may involve treatments such as antibiotics for a life-threatening infection, artificial nutrition and hydration as well as whether or not to attempt cardiopulmonary resuscitation (CPR). However, by identifying early those near the end of their life, communicating effectively and sensitively with them, and those important to them, about their needs and wishes, and carefully thinking through and documenting an individualised care plan, these challenging decisions become simpler, and the patient is more likely to have high-quality end of life care and a good death.
Five priorities for care of the dying person
The Leadership Alliance for the Care of Dying People, a collaboration of 21 national organisations including CQC, agreed five priorities for end of life care for all health and care staff in One chance to get it right.5 Following the review and phasing out of the Liverpool Care Pathway in July 2014, these priorities focus on the individual, with a personalised approach to improve care for the dying, their family and carers.6
The document makes clear GP practices’ role in delivering the priorities, and together with the accompanying guidance, they help to inform CQC’s inspection methodology. The five priorities are summarised here with information about what CQC expect to see when it inspects GP practices.
1. Recognition: the possibility that a person may die within the coming days or hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
Dying Matters’ 'Find your 1%’ campaign7 supports GPs to identify patients who are likely to die within 12 months, providing useful supporting guidance to achieve this. Recognising who is at the end of life enables care planning, communication and service coordination. It also allows clinicians to clearly and sensitively explain to their patients that they are dying, as well as to those who are important to them, and involve them early in decisions about their care.
A CQC inspection team is likely to ask to see documentation about a recent death of a patient cared for by your practice, as well as how many patients who died in the past year were included on your palliative care/GSF/QOF register.
2. Communication: sensitive communication takes place between staff and the person who is dying and those important to them.
A 2014 survey of GPs found that 25% had never initiated a conversation about end of life care with a patient, despite GPs looking after 20 dying patients a year on average.8 Open and honest communication between staff and the person who is dying, and those identified as important to them, is vitally important to good care. Communication must be regular, proactive and two-way, as well as conducted in a way that maximises privacy and respect. It is important to listen to the views of the person and those important to them, not simply provide information.
CQC inspectors will consider how the practice uses the palliative care register and team meetings to improve coordination and communication with others involved in a person’s care.
3. Patient involvement: the dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
Although individuals vary in the extent to which they want to be involved in decisions about their treatment, most want some influence in their care and how it is delivered. Sensitive communication is needed to determine their wishes, including the extent to which they wish their families and other important people to them to be included in decision-making. Where the dying person lacks capacity to make a particular decision, the action taken on their behalf must be in their best interests, and they should still be involved as far as possible.
These discussions should also support people to make choices about their preferred place of death. Despite up to 74% of people saying they would prefer to die at home, an average of 58% are still dying in hospital. Furthermore, a quarter of care home resident deaths occur in a hospital.3 GPs visit these patients and have an opportunity to work closely with them as well care home providers to identify those who may be approaching end of life, to ensure they have a dignified death where they choose to.
CQC inspection teams will want to understand how the practice records discussions about patients’ needs, wishes and preferences (advance care planning) and how it ensures they are fulfilled. They may ask how many patients died where they wished to, and if an after-death analysis is undertaken so that learning can be taken from occasions when people did not achieve their preferred place of death.
4. Family needs: the needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
The needs of the family of the dying person and those important to them can often be overlooked. They are likely to be anxious, fearful and physically and emotionally exhausted. Where they have particular needs for support or information, these should be met as far as possible, even if that is mostly listening to and acknowledging their concerns. If a person does not have the capacity to make a decision about their care, the decision-making process should be explained to those people who are supporting the person and they should be involved as much as possible.
A CQC inspection team will ask how practices support the family and carers of patients at the end of life and in bereavement.
5. Tailored care planning: an individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.
GP practices should coordinate an individualised care plan that meets the dying person’s needs and wishes. The care plan must include attention to symptom control as well as the person’s physical, emotional, psychological, social, spiritual, cultural and religious needs. Consideration should be given to how the person will be supported to eat and drink as long as they wish to do so, and how their comfort and dignity will be prioritised.
CQC inspectors will look for evidence of GPs supporting individualised care plans that have been produced in collaboration with patients.9
A different ending
CQC has recently published a thematic report on inequalities in end-of-life care, A different ending. CQC asked whether people who may be less likely to receive good end-of-life care – whether because of diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances – received the care they needed. CQC found significant variation in the quality of end-of-life care for people from different groups.
It has encouraged GPs to ensure everyone with a life-limiting progressive condition has the opportunity, if they wish, to have a named care co-ordinator who is the lead professional to co-ordinate services around them. This could be the GP, district nurse, specialist nurse, care co-ordinator or any other professional most appropriate to the person’s needs.
- Dr Devin Gray is a GP registrar and national medical director’s clinical fellow in London, currently seconded to the Care Quality Commission
- End of life care for adults (NICE Quality Standard)
- House of Commons Health Committee End of Life Care (2015)
- National Audit Office (2008) End of Life Care
- Leadership Alliance for the Care of Dying People (2014a) One Chance to Get It Right.
- GMC Guidance (2010) Treatment and care towards the end of life: good practice in decision making.
- Neuberger J (2013) More Care, Less Pathway: a Review of the Liverpool Care Pathway. London: DH.
- Dying Matters Find Your 1%: supporting GPs in delivering quality end of life care.
- NCPC Dying Matters survey (2014)
- Dying Matters How to help your patients