People at the end of life

This Topic Guide explores part of the RCGP curriculum, Being a General Practitioner. It will help you understand important issues relating to end-of-life care by illustrating the key learning points with a case scenario and questions. It also contains tips and advice for learning, assessment and continuing professional development, including guidance on the knowledge relevant to this area of general practice.

Each Topic Guide is intended to illustrate important aspects of everyday general practice, rather than provide a comprehensive overview of each clinical topic. It should therefore be considered in conjunction with other Topic Guides and educational resources.

The role of the GP in end-of-life and palliative care

As a GP, your role is to: 

  • Enable early identification of patients and their carers 
  • Holistically assess the needs of the patient, family and carer  
  • Understand diversity of need across age, gender, diagnosis, disability, sexuality, culture and spirituality to enable individualised care 
  • Identify reversible conditions or deterioration and proactively plan for anticipated changes in capacity 
  • Recognise common themes and consideration required for sensitive communication  
  • Manage the general medical care and support the needs of patients with advanced serious illness and end of life care  
  • Understand the purpose and function of the multidisciplinary team (MDT)  
  • Liaise and work in partnership with specialist palliative care and MDTs-  to optimise care
  • Understand the benefits of Personalised Care and Support Planning  
  • Understand how to reliably meet Five Priorities of Care for people in the last days of life, to ensure the best care and death possible. (Recognise, Communicate, Involve, Support, Plan & Do) 
  • Deliver care with compassion, so that the person can die with dignity, with individualised care and minimal distress. 
  • Ensure timely and regular review of the person’s needs and wishes, and revise care and support plans accordingly 
  • Understand your role in care after death, including health promotion advice and support of normal and complex grief responses 
  • Understand the importance of reliable processes in place, such as best practice coding and documentation, required to support patients and those important to them  
  • Participate in reflective practice to learn from deaths and improve your practice 
  • Understand the public health compassionate community approach and the GPs role within this.  

Emerging issues in end-of-life care

General practitioners play a key role in caring for people with advanced serious illness and those who are nearing the end of their life. But providing that care at a consistently high level of quality can often be challenging. The use of voluntary quality improvement standards for GPs, can help assess and improve end of life care. They might include:

  1. Professional and competent staff  
  2. Early identification  
  3. Carer support - before and after death  
  4. Seamless, planned, co-ordinated care  
  5. Assessment of unique needs of the patient 
  6. Quality care during the last days of life  
  7. Care after death  
  8. General practices being hubs within compassionate communities  
  • A Compassionate Communities, Public Health Palliative Care Approach can improve quality and meaning in life, experience, outcomes and the ability to mobilise the community to help develop supportive networks.  
  • Improving communication and coordination of important information between health and social care professionals from different care settings, including the use of Electronic Palliative Care Co-ordination Systems (EPaCCS).  
  • Documentation including Treatment Escalation Plans, ‘Do Not Attempt Resuscitation’ (DNAR), Deprivation of Liberty Safeguards, Advance Decision to Refuse Treatment (ADRT) and Lasting Power of Attorney (LPA). There is a range of relevant documentation, which can vary by region across the UK 
  • Application of an early palliative care approach and integration of proactive care planning into the management of all patients with advanced serious illness, including frailty, multi-morbidity and non-malignant disease. 

Knowledge and skills guide

The General Medical Council defines people as ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes: patients whose death is imminent (expected within a few hours or days); those with advanced, progressive, incurable conditions, general frailty and co-existing conditions; life-threatening acute conditions or deterioration caused by sudden catastrophic events. Palliative care is a broader approach that improves the quality of life of patients and families facing the problems associated with life-threatening illness; physical, psychological, cultural, social and spiritual.

For each problem or disease, consider the following areas within the general context of primary care: 

  • The natural history of the untreated condition, including whether acute or chronic 
  • The prevalence and incidence across all ages and any changes over time  
  • Typical and atypical presentations  
  • Recognition of normal variations throughout life 
  • Risk factors, including lifestyle, socio-economic and cultural factors 
  • Diagnostic features and differential diagnosis 
  • Recognition of ‘alarm’ or ‘red flag’ features 
  • Appropriate and relevant investigations 
  • Interpretation of test results 
  • Management including, self-care, initial emergency and continuing care, chronic disease monitoring,  
  • Patient information and education including self care 
  • Prognosis, and management of uncertainty 
  • Benefits of non-health based support for the patient, family and carer 

Symptoms and signs

  • Pain 
  • Gastrointestinal symptoms (for example nausea and vomiting, oral symptoms such as ulceration, constipation, diarrhoea, ascites, hiccupping) 
  • Cachexia, anorexia and fatigue 
  • Psychological problems (for example insomnia, anxiety, depression, delirium, restlessness and terminal agitation)  
  • Neurological symptoms (for example Headaches, Fits, limb weakness)  
  • Respiratory symptoms (for example breathlessness, excessive secretions, cough) 
  • Skin symptoms (for example pruritis, lymphoedema, prevention of pressure sores) 
  • Signs and symptoms of dying may include an exacerbation of those listed above 
  • Anticipatory grief (patient and carer) and bereavement support (carer) 
  • Care giver ‘pressure points and distress’ 
  • Recognition of complex grief signs and symptoms (to align with changing ICD code) 

Common and important conditions

Pain is a common symptom in palliative care. Recognition of the type, expression and possible causes of pain and its management are important (physical, psychosocial, cultural and spiritual)  

Emergencies in palliative care include:

  • haemorrhage
  • hypercalcaemia
  • superior vena cava obstruction
  • spinal cord compression
  • raised intracranial pressure
  • sepsis
  • pancytopenia and 
  • venous thromboembolic events (for example pulmonary embolus or deep vein thrombosis). 

Examinations and procedures

  • Assessing and diagnosing the cause of symptoms through appropriate targeted examination 
  • Pain and symptom management including knowledge of therapeutic procedures 
  • Psychological support 

Investigations

Investigations may be aimed at the underlying condition itself or checking for reversible conditions when appropriate. The rationale for investigations should be carefully considered and agreed with patients and those important to them.

Service issues

  • Palliative and end of life care takes time and planning. The number of people who die each year is rising. 
  • There is an increasing demand for specialist palliative care services, which are commonly supported by funding from charitable organisations. 
  • Optimising links between health and care services with de-medicalised support from voluntary sector and community development. 
  • Inequities in access and provision of palliative care services including 24/7 specialist palliative care support.  
  • Patient preference for place of death may be their home, which may require significant support and planning. 
  • Difficulties of prognostication and managing uncertainty. 
  • The importance of palliative care meetings and training within primary care teams for good service provision. 
  • Achieving reliability of care and experience for all patients who have an expectable death. 
  • Financial implications for patients and their carers including access to benefits (for example DS1500). 
  • Timely, death verification and certification.  

Additional important content

  • An increasing number of children and young people are living longer with life-limiting and life-threatening conditions and may require the support of the GP at times through their illness, including at transition from paediatric to adult services. The GP has a key role, providing general medical care and holistic care and support to the family. A GP may be involved in the care of a dying child only a few times during their career, and will require access to the wider MDT and knowledge of local services for help and support in this circumstance.  
  • Approaches to supporting families and carers after bereavement need to take into account religious, spiritual and cultural beliefs and practices 
  • A GP needs to be aware of ethical considerations in palliative care and the use of GMC guidance (for example autonomy, beneficence, non-maleficence). 

Case discussion

Mr Singh is 82 years old and the head of a large Sikh family. He had a haemorrhagic stroke two months ago which left him bed-bound with a reduced consciousness level and unable to communicate, although he can swallow soft food. He is cared for at home by his daughters and granddaughters.

Over the past week, his conscious level has declined and he is choking on his foods. He is having difficulty swallowing and you suspect that he has had further cerebral bleeding.  The family would like to continue to care for Mr Singh at home, in line with their cultural practices and beliefs.

You make a referral to the District Nursing team and perform a thorough assessment at home. You also contact the local Specialist Palliative Care team for expert advice regarding end-of-life care and psychological and spiritual support for the family.

A week later, you are asked to make an urgent home visit to Mr Singh. He has deteriorated further, is tachycardic and has coarse crepitations in his right lung. You make the decision to arrange admission to hospital where he is treated for an aspiration pneumonia with IV antibiotics and a drip is inserted to provide hydration while further assessment of his condition is made.  Further tests indicate that he has had more cerebral bleeding.

He is discharged home, and you note on the discharge summary the intravenous drip he had in hospital has been stopped after a discussion of risks and benefits before his transfer home. Sensitive DNACPR discussions have taken place with Mr Singh and his family and a form completed and sent to the local ambulance service and the family take a copy home with them.

Mr Singh is discussed at the practice palliative care meeting. The District Nurses have arranged for Mr Singh to have a hospital bed downstairs in his house. They are concerned that he appears to be agitated at times and that his breathing has become noisy due to respiratory secretions. His family are finding his slow decline traumatic. They feel that the goals of care should focus on symptom management and comfort. Mr Singh dies peacefully five days later.

You are able to issue Mr Singh’s death certificate the next day, which helps the family to arrange his cremation in line with their spiritual beliefs. The family are supported by the Specialist Palliative Care team’s bereavement service.

(Source: This is a modified version of the GMC End-of-Life Care illustrative case.)

Questions

These questions are provided to prompt you to consider the key points of the case. They can form the basis for a case-based discussion with your Educational Supervisor and will assist you in writing reflective entries in your ePortfolio. The questions are examples to trigger reflection and are not intended to be comprehensive.  

 

                                  Core Competence            
                   Questions                                           
Fitness to practise  
This concerns the development of professional values, behaviours and personal resilience and preparation for career-long development and revalidation. It includes having insight into when your own performance, conduct or health might put patients at risk, as well as taking action to protect patients. 
What are my personal feelings about advance care planning and adhering to my patient's requests? 

How do we respect other people’s views and shared decision-making? 

How do we make time for sensitive and difficult conversations in a busy GP working day?  
Maintaining an ethical approach 
This addresses the importance of practising ethically, with integrity and a respect for diversity. 
What is the GMC's advice on end-of-life care? 

What are the ethical principles relevant to care planning and end of life care? Are there cultural beliefs that need exploring?  

When would I need to consider the Mental Capacity Act?  
Communication and consultation 
This is about communication with patients, the use of recognised consultation techniques, establishing patient partnerships, managing challenging consultations, third-party consulting and the use of interpreters. 
How would I explain disease progression, variation and uncertainty around death and dying in this case? 

How could I start a discussion about end of life care planning?  

How would I handle issues such as distress or different opinions between family members? 
Data gathering and interpretation 
This is about interpreting the patient's narrative, clinical record and biographical data. It also concerns the use of investigations.
What are the challenges in identification of reversible causes of deterioration and whether investigation and / or hospital admission is necessary and appropriate? 

Am I aware of important psychosocial factors including the patient’s occupation?  
Clinical Examination and Procedural Skills 
This is about the adoption of an appropriate and proficient approach to clinical examination and procedural skills.  
What symptoms might be problematic towards the end of life?  

What other potential palliative care emergencies might arise in this situation and how would I manage them? 

What are the indications for a syringe driver?  
Making decisions 
This is about having a conscious, structured approach to decision-making; within the consultation and in wider areas of practice. 
Which specific problem-solving elements are demonstrated in the case study?  

How can the MDT support decision-making, information-sharing, peer support and education? 
Clinical management  
This concerns the recognition and management of common medical conditions encountered in generalist medical care. It includes safe prescribing and medicines management approaches. 
How would I manage distressing symptoms towards the end of life? How might these present? 

Am I aware of where to find information and support for anticipatory prescribing and prescribing a syringe driver if necessary?  
Managing medical complexity  
This is about aspects of care beyond managing straightforward problems. It includes multi-professional management of co-morbidity and poly-pharmacy, as well as uncertainty and risk. It also covers appropriate referral, planning and organising complex care, promoting recovery and rehabilitation. 
 How do I involve patients in assessing risks and benefits when deciding on care at home for patients with complex clinical needs? 

Do the family have the necessary information, knowledge and skills to support care?  

Can the family recognise distress and / or pain and are they aware how they can help including, giving medication that will help? 
Working with colleagues and in teams 
This is about working effectively with other professionals to ensure good patient care. It includes sharing information with colleagues, effective service navigation, use of team skill mix, applying leadership, management and team-working skills in real-life practice, and demonstrating flexibility with regard to career development. 
As the patient’s GP, where in this case study am I demonstrating my ability to function as both leader and member of end-of-life teams?  

Who should the other members of this team be? 

How will I communicate with out-of-hours providers, district nurses and the wider practice team? 
Improving performance, learning and teaching  
This is about maintaining performance and effective CPD for oneself and others. This includes self-directed adult learning, leading clinical care and service development, quality improvement and research activity. 
What educational resources, especially locally, can I access for palliative and end-of-life care?  

What is the evidence-base for end-of-life care and what are the difficulties associated with research in this area? 
Organisational management and leadership 
This is about the understanding of organisations and systems, the appropriate use of administration systems, effective record keeping and utilisation of IT for the benefit of patient care. It also includes structured care planning, using new technologies to access and deliver care and developing relevant business and financial management skills. 
What is the importance of documenting key decisions about preferences, ceilings of care and DNACPR?0 

What are the out-of-hours care arrangements? How can this help be accessed quickly if necessary?  

Am I familiar with the legal and statutory reporting obligations on death and cremation certificates, and the criteria for referral to the coroner? 

How can I reflect on and learn from deaths? How can I be involved with shared learning, across sectors?  

How do I achieve reliability of processes to enable high quality and safe care for all patients affected by end of life care? 
Practising holistically, safeguarding and promoting health
This is about the physical, psychological, socioeconomic and cultural dimensions of health. It includes considering feelings as well as thoughts, encouraging health improvement, preventative medicine, self-management and care planning with patients and carers. 
How could I support the grieving process in Mr Singh's family? 

On what occasions in this case study have the spiritual and cultural needs of my patient and his carers been identified and attended to? 

Community orientation  
This is about involvement in the health of the local population. It includes understanding the need to build community engagement and resilience, family and community-based interventions, as well as the global and multi-cultural aspects of delivering evidence-based, sustainable healthcare. 

What social benefits and services might be available to my patient and his carers? 

What support has the patient and main caregiver got available to them in a crisis – from health/care services and also within their supportive community networks? 

How to learn this area of practice

Work-based learning

Learning about palliative and end-of-life care occurs most effectively when you are actively involved in caring for a patient in the last year(s) of life, including when they are dying. This can be in the patient’s own home, or in a hospital, hospice or nursing home. You will find yourself surrounded by many health and care professionals from whom you will learn how to become better at this very difficult but rewarding aspect of being a GP. It is worth noting the role that every member of the MDT plays, and what is important to the patient and their family. It is also important to note how the patient and main caregiver(s) gain and build support and resilience from networks with their community.

Try if at all possible to follow a patient at the end of life and build a case study with suitably anonymised clinical detail, accompanied by your reflections. Working alongside your GP trainer can help in the day-to-day debriefing and managing your own beliefs and emotions. When death happens, ask if you and your trainer can visit the family and discuss their opinions of the care they received. Listen, reflect and share with your colleagues. Training practices usually have regular palliative care meetings where there is opportunity to discuss and learn from deaths with MDT members.

It is interesting to reflect on your observations and experiences of palliative and end-of-life care in hospital and the community, and how these may differ. Consider visiting a hospice if you do not have a clinical placement there, as this will provide another insight. You may witness varying attitudes to death including team members who see dying as a failure of their care and ability to cure, and others who view it more openly as a part of life.

Self-directed learning

There are many structured learning events, especially in local hospices and courses run by the major charities. There is a growing body of e-Learning to help consolidate and build on knowledge gained in the workplace. You can find an e-Learning module(s) relevant to this topic guide at e-Learning for Healthcare. For GP trainees, your specialty training programme should offer case-based discussions where end-of-life care can be shared. You can find an e-Learning module(s) relevant to this topic guide at e-Learning for Healthcare.

Deaths in our own life can affect the way in which we manage the deaths of others. Consider your own feelings, emotions and beliefs about death and dying. Be open about this with your supervisors. It is possible to read about experiences of other people to help widen your own understanding of how different people can respond to death and dying, helping also appreciate variation across age, gender, diagnosis, disability, sexuality, culture and spirituality to enable individualised care.

Consider people’s supportive network available to help increase their resilience and wellbeing, whilst they are not in direct contact with health and care professionals.

Furthermore, be cognisant of your own wellbeing, resilience and compassion needs. Dealing with distress and dying can be very rewarding but also emotionally draining. Explore options of how you debrief, distress and handle professional grief to help support your own resilience. This can be particularly important if you are dealing with illness, loss or grief in your own life, so get to know your own ‘warning signs’. Talk about coping strategies with your trainer and peer-groups.

There are valuable resources in the arts, including fiction and non-fiction books, theatre and films, which provide ways of considering the human experience and can be used in groups to supplement case-based discussions.

Examples of how this area of practice may be tested in the MRCGP

Applied Knowledge Test (AKT) 

  • Recognition of emergencies in palliative care 
  • Entitlement to statutory benefits such as DS1500
  • Management of types of pain, for example  neuropathic pain and metastatic bone pain

Clinical Skills Assessment (CSA) 

  • A man with metastatic bowel cancer wants to discuss his on-going care 
  • Phone call: District nurse requests medication to control nausea in a dying patient 
  • A Muslim woman seeks reassurance that her husband’s end-of-life care and funeral arrangements will comply with his religious traditions which she describes when asked.  

Workplace-based Assessment (WPBA) 

  • Log entry reflecting on organising home oxygen for a patient with end-stage COPD 
  • Consultation Observation Tool (COT) of a discussion with a patient about DNACPR  
  • Log entry about chairing the practice palliative care meeting, contemporaneously updating the patient record and ensuring communication with the wider MDT, including out-of-hours providers.  

Examples of how this area of practice may be tested in the MRCGP

Applied Knowledge Test (AKT) 

  • Recognition of emergencies in palliative care 
  • Entitlement to statutory benefits such as DS1500
  • Management of types of pain, for example  neuropathic pain and metastatic bone pain

Clinical Skills Assessment (CSA) 

  • A man with metastatic bowel cancer wants to discuss his on-going care 
  • Phone call: District nurse requests medication to control nausea in a dying patient 
  • A Muslim woman seeks reassurance that her husband’s end-of-life care and funeral arrangements will comply with his religious traditions which she describes when asked

Workplace-based Assessment (WPBA) 

  • Log entry reflecting on organising home oxygen for a patient with end-stage COPD 
  • Consultation Observation Tool (COT) of a discussion with a patient about DNACPR  
  • Log entry about chairing the practice palliative care meeting, contemporaneously updating the patient record and ensuring communication with the wider MDT, including out-of-hours providers  

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