Develop Skills to Diagnose End-of-Life and Dying
A surprising finding of the audit is that certain aspects of end-of-life care – notably diagnosis of dying, making decisions about appropriate treatment and care, and the use of specialist palliative care – do not have any statistically significant influence on care outcomes when all other factors are taken into account. It is recognised that diagnosing when the end-of-life journey begins, and specifically when dying begins, can be difficult and uncertain. Nevertheless, nurses and doctors report that in the vast majority of cases (86%), they had diagnosed dying 5-6 days before the patient’s death, much more frequently than in French hospitals and earlier than in English hospitals. One possible reason why the diagnosis of dying does not have an impact on care outcomes may be that that there is substantial variation in the diagnostic skills of hospital staff, which effectively means that some deaths were ‘diagnosed’ retrospectively rather than prospectively and, as a result, they had no impact on the care provided. Another possibility is that there is substantial variation in the way hospitals, wards and individual staff respond to a diagnosis of dying with the result that a diagnosis of dying has no systematic effect on care outcomes. Given the importance of assessing patient needs through proper diagnosis, this result merits further investigation by hospitals.
Improve End-of-Life Care Decision-Making
The audit revealed that the extent to which end-of-life decisions are taken about dying patients in Irish hospitals is significantly lower compared to patients dying in English hospitals, especially those on the Liverpool Care Pathway (LCP). Although decisions to withhold or withdraw life support are taken more frequently in intensive care (53%), compared to other wards (47%), they are much less frequent compared to the practice in 17 European countries. Our statistical analysis reveals that end-of-life care decision-making – either the overall number of decisions or the specific decision to ‘review medication, route of administration, and stop non-essential medication’ – had no independent effect on care outcomes.
As with the diagnosis of dying, this finding suggests that there is not a common approach to end-of-life decision-making. All standards for end-of-life care indicate that an effective approach requires making appropriate decisions when the patient is no longer responding to active treatment or has a life-limiting illness which has deteriorated recently and rapidly, or where the patient is presenting signs of dying. The audit suggests that, for whatever reasons, these decisions are not regularly being made in Irish hospitals and, where they are made, they seem to have little effect on care outcomes. This is a challenging finding because it suggests that while hospitals provide ‘care at the end of life’ they are not necessarily providing ‘end-of-life care’ because the care seems to lack an effective palliative care component.
Hold Team Meetings
The audit reveals that considerable flexibility and informality exists around the holding of, and attendance at team meetings in hospital, and there is clearly no standardised procedure for reporting the outcome of meetings to patients and relatives. This is suggested not just by the responses of doctors and nurses, but also by the fact that these responses disagree on whether the meeting actually took place in up to a third of cases.
Our statistical analysis shows that team meetings have an important impact on care outcomes, especially symptom management and patient care, but are also associated with other predictors of care outcomes such as a cancer diagnosis, dying in a single room and better communication with patients and relatives. Conversely, team meetings are less likely in cases where there are negative predictors of care outcomes such as sudden death, death in A&E or a surgical ward, due to accident or trauma or within a week of admission. Given that three quarters of all deaths are not sudden, there is scope to ensure that the beneficial effects of team meetings are extended to more patients who die in hospital.
The fact that the frequency of team meetings varies by ward (being more frequent in oncology and geriatric wards) and diagnostic category (being more frequent for cancer patients) suggests that a team approach to patient care, where it exists, may be more influenced by the work practices of different disciplines and wards rather than by a hospital-wide approach to planning the end-of-life care of patients. While this underlines the diversity of practices, it also draws attention to the fact that these practices are not influenced by patient needs but by the work habits of different specialties and wards and could, therefore, be changed.
Provide Training in End-of-Life Care
Nurses who have received formal training on end-of-life or palliative care since qualifying can achieve better care outcomes than nurses who have not. This is a definitive endorsement of the value of training. We also know that training is strongly correlated with nurses feeling prepared for the death of a patient and feeling comfortable talking about death and to people who have recently been bereaved. This suggests that training may help nurses to relate more comfortably to the reality of dying and death and to their own fears about dying and death, which are inevitably projected onto patients and relatives. This finding provides encouragement to hospitals and staff that training is an investment that pays dividends in terms of improved care outcomes.
Ideally, basic training on end-of-life issues should be provided for all professional, support and administrative staff who come into contact with patients and relatives, with more intense training for clinical staff in areas such as breaking bad news, end-of-life discussions, diagnosing dying, managing symptoms, understanding bereavement and loss and dealing with death at a personal level. In addition, end-of-life care is rarely mentioned in staff induction, unlike the practice in Northern Ireland where it is an integral element of this, and this is something that needs to be addressed.
As with communication, one of the obstacles to training in end-of-life care is the belief by a majority of hospital staff – and the vast majority of nurses and doctors – that they are already well-prepared for dealing with the death of a patient, even though most staff have not had any training in this area. The fact that training in end-of-life care makes a difference to care outcomes, as the audit reveals, may help to dissolve resistance by inviting nurses, doctors and other hospital staff to be more open to the possibility that training could improve their practice and improve care outcomes for patients and relatives.
Prepare Staff for the Death of Patients
The fact that care outcomes are significantly better when a nurse feels prepared for dealing with the death of a patient may appear obvious. However, the fact that most hospital staff receive little or no preparation for different aspects of care at the end of life suggests that, if obvious, this insight is rarely acted upon. The audit clearly draws attention to the importance of preparing hospital staff for the specific aspects of this care, and the absence of this preparation may help explain why hospitals seem to provide generic ‘care at the end of life’ rather than more specific ‘end-of-life care’.
Feeling prepared for the death of a patient is enhanced by experience and training…….but it is also strongly associated with feeling comfortable talking about death and talking to people who have been recently bereaved. This underlines the personal as well as the professional aspect of care, especially in caring for dying patients, and the specific need to address the fears that hospital staff have about dying and death.
Build on the Experience of Staff
The finding that a nurse’s years of experience working in a hospital and ward has an independent effect on care outcomes is an important result. There is a common assumption that, over time, people get better at what they do, but this is far from inevitable and improvement requires more than the simple passage of time. The effect of experience identified in the audit may embody the simple process of growing older and wiser, itself a psychological and not just a chronological process. It may also embody a relationship with work and service whereby, through dedication and reflection, years of experience become wells of experience.
This finding gives substance to the idea that a hospital’s greatest resource is its staff but adds to it by showing that the resource improves as staff mature. It seems likely that the same processes apply to doctors and other hospital staff but, since we collected this data from nurses only, we are not in a position to study this. Nevertheless, the finding underlines the importance of retaining experienced nurses within the hospital and ward and ensuring that they have a direct role in patient care. Ideally, the benefits of staff experience are mediated through ward managers who, by example, set and maintain standards of clinical care that produce better outcomes. In addition, the finding invites hospitals to think creatively about the processes that need to be in place to help staff distil their years of experience into a more mature understanding of the simple essence of care.
Communicate with Residents recieving End-of-Life Care
Click here to read a report to the Health Services National Partnership Programme on a project which looked at relating well to residents receiving End-of-Life Care