End-of-life care has always been an important part of the daily workload of GPs and other primary care professionals. Of an average-sized list of around 2,000 patients, about 20 (one per cent) will be coming towards the end of their life. As people live longer and have much more complex health needs typical of the oldest old, managing the last few months of life has become more complicated, demanding more time and input from the multidisciplinary team.
A large number of these people need good palliative care, for example those who have a progressing malignancy, and this field continues to develop, although the removal of the Liverpool Care Pathway threw many people back (at least temporarily) towards the fumbling chaos that lead to its establishment in the first place. However, many others are not on a clear trajectory towards death but simply very frail with a high risk of complications that may prove rapidly fatal, or from which they may stagger on.
The value of advanced care planning (ACP) for these patients is increasingly recognised, but brings more challenges around trying to think ahead and consider what might happen and how to deal with it, as well as working with families and their expectations.
What is expected from a GP?
So what is the current situation regarding priorities for end-of-life care, and what is expected from a GP?
Over the past decade a number of policy documents have been developed to help guide practice. For example, in 2010 the General Medical Council (GMC) produced guidance Treatment and care towards the end of life. This provides a framework for good practice using a working definition of end-of-life care which includes anyone considered to be in the final year, not just final days, of life (see box 1).
|Box 1 : Overall responsibilities of a GP regarding end-of-life care|
There is some variation in the approach recommended for end-of-life care in the four different health systems in the UK. However the GMC advises that generally doctors should focus on the five priorities for individual, holistic care planning set by the Leadership Alliance for the Care of Dying People – (a coalition of organisations). These priorities (box 2) are set about the core principles of good care, rather than following processes or protocols. The GMC has provided further guidance for doctors across the UK at www.gmc-uk.org/publications/25073.asp.
|Box 2. Five priorities for the care of dying people|
The Gold Standards Framework approach
The Gold Standards Framework (GSF), which provides a validated foundation for delivering quality end-of-life care, reflects these five principles - see http://www.goldstandardsframework.org.uk. Three steps are outlined:
- Identify : recognise those coming to the end of life.
- Assess : clarify the person’s needs, wishes and expectations, using Advanced Care Planning tools.
- Plan : coordinate a plan for delivering care, including from the multidisciplinary team, to enable the person to live and die well as they choose. This may include avoiding unplanned admissions to hospital, enabling more people to die at home if they so wish.
Identifying patients approaching the end of life
Identifying those patients who are approaching the end of their life is imperative in order to provide time to plan proactively around their wishes. The GMC definition, of patients ‘approaching the end of life’ when they are likely to die within the next 12 months, is also used in the 2008 NHS End of life care strategy and NICE’s 2011 quality standards for end-of-life care for adults. So "end of life" includes not only patients whose death is imminent (expected within a few hours or days) but also those with:
- advanced, progressive and 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.
Of course no one can predict exactly what is likely to happen to any individual patient, so great flexibility is needed. However uncertainties of prognosis should not inhibit the opportunities to discuss with a patient who has significant chronic conditions or frailty how they see the future and what their feelings are about the end of life. One of the failures identified by the independent review of the Liverpool Care Pathway was a lack of tailored, personalised care. Personalising care can take time, to bring into place the right drugs, equipment and support, and so early identification of those towards the end of life is needed.
Clinical experience and understanding can help inform the often-used simple question: "Would you be surprised if this person dies in the next year?", but other indicators of frailty and decline (including deteriorating function, increased dependency, and loss of oral intake) can inform the guesstimate of likely prognosis. The GSF Prognostic Indicator Guidance offers a comprehensive approach which emphasises prediction rather than exact prognostication in order to anticipate needs and provide the right care at the right time rather than attempt to define timescales.
Placing the patient on a register, such as the QOF (Palliative Care) or GSF Palliative Care register has been shown to lead to better coordinated care, by triggering specific support.
Assessing patients at the end of life
Advance Care Planning (ACP) is now widely used to formalise discussion with patients who have been identified as nearing the end of life, and their families, to assess their needs, wishes, and preferences for the future. Ideally this is done in an unhurried face-to-face manner with a person that the patient identifies as important to their care (ideally someone on the multidisciplinary team). Often there have been a number of informal conversations around similar topics, but the ACP provides a framework that allows for ongoing review and gives the patient and family a chance to develop their views as the situation progresses.
Many local protocols or tools have been developed for ACP. Some are simple and can be filled in by the patient in their own time, (such as the Preferred Priorities for Care from Dying Matters). These usually include an advance statement, which allows the patient to declare what they would like to happen to them. Others are more detailed, and identify specific situations and how they should be managed, such as the ACP from Say It Once used by NHS South Central.
Tools include points such as Advanced Decision to Refuse Treatment (ADRT), covering for example antibiotics in the case of pneumonia; do not attempt cardiopulmonary resuscitation orders (DNACPR); and the details of nominated representatives who can speak for the person if necessary. Some of these topics may have already been addressed in legal documents such as an Advance Directive or in nominating a Lasting Power of Attorney for health and welfare. The National Council for Palliative Care has a thorough guide to ACP.
End-of-life care planning
A plan for care can then be laid out based on the ACP, local service provision and other support such as family or friends.
There is a current drive is to reduce unplanned and avoidable admissions to hospital, with an aim in part to facilitate people’s wishes to die at home but also to avoid unnecessary interventions, overtreatment and crisis escalation. More proactive planning to end-of-life care can also help make more efficient use of costs.
NHS England’s Avoiding Unplanned Admissions Direct Enhanced Service recommends that practices should achieve this goal by developing more proactive care, offering patients easier accessibility to care, holding case management registers and conducting regular planning discussions and reviews.
For patients in the last days of life at home or in a care home, consider anticipatory prescribing for end-of-life symptom control. Protocols for anticipatory prescribing for symptom management vary from area to area. The Scottish Palliative Care Guidelines are a useful example. Table 1 summarises information on drugs and dosages found in the Scottish Palliative Care Guidelines on anticipatory prescribing.
|Drugs and dosages for anticipatory prescription|
|Pain or breathlessness||Morphine sulfate injection (10mg/ml ampoules) OR||2mg SC, hourly as needed.|
|Pain or breathlessness||Diamorphine hydrochloride injection (powder for reconstitution)||2mg SC, hourly as needed.|
|Anxiety/distress/myoclonus||Midazolam injection (10mg in 2ml ampoules)||2mg SC, hourly as needed.|
|Secretions||Hyoscine butylbromide injection (20mg/ml ampoules)||20mg SC, hourly as needed. Maximum of 120mg in 24 hours.|
|Nausea||Levomepromazine injection (25mg/ml ampoules) OR||2.5 to 5mg SC, eight- to 12-hourly as needed.|
|Nausea||Haloperidol injection (5mg/ml ampoules)||500 micrograms SC, 12-hourly as needed.|
|Agitation/confusion/ delirium||Haloperidol injection (5mg/1ml ampoules) OR||2mg SC once or twice daily as required.|
|Agitation/confusion/ delirium||Levomepromazine injection (25mg/ml ampoules)||12.5mg SC two-hourly as required (maximum of six doses/24 hours).|
NB: Haloperidol and levomepromazine have the potential to prolong QT interval. Levomepromazine and haloperidol are generally only used in high doses to treat delirium/confusion and in much lower doses for nausea/vomiting.
Future developments in end-of-life care
NICE has published a draft guideline on care of the dying adult with a scheduled publication date of December 2015. The guideline, which covers the clinical care of adults in the last few days of life, is aimed at a wide audience, from people who are dying and their loved ones, to the healthcare professionals looking after them, as well as the commissioners of care at the end of life.
It has particularly taken into account the main concerns that led to controversy around the Liverpool Care Pathway, such as provision of a reliable assessment that the person is dying, and issues around withdrawal of fluids, nutrition or medicines.
The care of the dying adult draft guideline specifically addresses five areas:
- advice about recognising when a person is in the last days of life
- communication with the person and those important to them , especially about their prognosis and their wishes for care
- the process of shared decision-making
- maintaining hydration (and considerations for clinically-assisted hydration)
- pharmacological interventions (medications for symptom management, details for anticipatory prescribing)
The past decade or so has seen considerable change in our approach to end-of-life care, but there remain many challenges in the current NHS climate, especially for the frail elderly with multiple co-morbidities, who need immense support to remain in their own homes. Work through the case studies below to decide what you would do in each scenario.
Mr Smith is a frail but fiercely independent 92 year-old living in his own home. He has a jigsaw of support from neighbours and friends but refuses formal care. He has repeatedly fallen in the past few weeks but refuses to go to hospital. Eventually he agrees to a visit from his GP who finds that he is living in squalor. He is cachexic, with widespread hard lymph nodes palpable and an enlarged liver. However he refuses any investigation and is emphatic that he wants to stay at home.
- What would you do now for Mr Smith ?
- Use the three steps outlined by the GSF (identify, assess, plan)
87 year old Mrs Shan has a long history of Parkinson’s disease, which has been increasingly hard to control, and also now has an associated Lewy body dementia. Two weeks ago she fell and fractured three ribs, but remained at home, cared for by her family. They have called the GP because she is continuing to have severe pain from the fractures but also appears to have developed a chest infection, and is struggling with a lot of secretions. Her daughter has a Lasting Power of Attorney and the family understands and accepts that Mrs Shan is close to the end of her life.
- How would you assess whether a palliative approach is appropriate now?
- What would you do to manage Mrs Shan’s pain and secretions?
You are called to a care home to see a patient you haven’t met before. When you get there he is bed-bound, extremely frail and clearly close to the end of life. Also present are several members of the family who are arguing about how their father should be managed. One daughter demands that everything possible should be done, and wants her father to be transferred to hospital. But her brother feels that he should be left to die peacefully at the home, which he insists would be what his father would want. The patient himself can only speak a few words and seems muddled (which the staff tell you is unusual for him).
- How do you manage this case ? (Keep in mind identify, assess, plan)