People at the end of life

As a GP, your role is to:

• use systems to proactively identify, record and review patients, their family and carers
• holistically assess and support the needs of the patient, family and carers
• understand diversity of need across age, gender, diagnosis, disability, sexuality, culture and spirituality to enable personalised 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) and work in partnership to optimise care
• meet the needs  of people in the last days of life, to ensure the best care and death possible, guided by appropriate frameworks to support end-of-life care
• deliver care with compassion, so that the person can die with dignity and minimal distress
• establish continuity of care with regular reviews of the person’s needs and wishes, and revise care and support plans accordingly
• understand your role in care after death, including death certification, liaising with the coroner and the medical examiner, and supporting normal and complex grief responses
• participate in reflective practice to learn from deaths and improve your practice

The General Medical Council (GMC) defines people as ‘approaching the end of life’ when they are likely to die within the next 12 months.¹ This includes: patients whose death is imminent (expected within a few hours or days); those with advanced, progressive, incurable conditions, general frailty and coexisting conditions; and 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-limiting and life-threatening illness, which may be 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 condition, including whether acute or chronic
• the incidence and prevalence, including in different demographic groups
• typical and atypical presentations
• recognition of normal variations throughout life
• risk factors, including lifestyle, socio-economic and genetic factors
• diagnostic features and differential diagnosis
• recognition of ‘alarm’ or ‘red flag’ features
• appropriate and appropriateness of investigations
• interpretation of test results
• management, including self-care, emergency and continuing care, chronic disease monitoring
• patient and carer information and education
• prognosis, and management of uncertainty 
• benefits of non-health-based support for the patient, family and carers.

Symptoms and signs

• Pain, including the psychosocial-cultural and spiritual aspects
• Gastrointestinal symptoms (such as nausea and vomiting, ascites and hiccups)
• Cachexia, anorexia and fatigue
• Psychological symptoms (such as restlessness and terminal agitation)
• Neurological symptoms (for example, headaches, fits, limb weakness)
• Respiratory symptoms (such as breathlessness and excessive secretions)
• Skin symptoms (such as pruritis, lymphoedema and pressure sores)
• Signs and symptoms of dying may include an exacerbation of those listed above
• Psychological distress and anticipatory grief (patient and carer)
• Complex grief signs and symptoms

Common and important conditions

• Recognition and management of the final stages of life (such as anticipatory prescribing)
• Emergencies in palliative care include:
  • haemorrhage
  • hypercalcaemia
  • superior vena cava obstruction 
  • spinal cord compression 
  • raised intracranial pressure 
  • sepsis 
  • pancytopenia  
• Severe complications of treatment
• Venous thromboembolic events (such as pulmonary embolism or deep vein thrombosis)

Examinations and procedures

• Assessing and diagnosing the cause of symptoms through targeted examination 
• Pain and symptom assessment, including knowledge of therapeutic procedures, for example nerve block, drainage of ascites or pleural effusion

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

• 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 demedicalised 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
• The importance (and difficulty) of continuity of care, 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 (such as eligibility for Special Rules payments and completion of an SR1 form²)
• Timely and accurate death verification and certification, and the appropriate involvement of statutory reporting bodies
• Approaches to supporting families and carers after bereavement need to take into account religious, spiritual and cultural beliefs and practices

Case discussion

Daya 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. You suspect that he has had further cerebral bleeding. The family would like to continue to care for him at home, in line with their cultural practices and beliefs.

You make a referral to the district nursing team and contact the local palliative care team for 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. He is tachycardic and has coarse crepitations in his right lung. You make the decision to arrange admission to hospital to treat aspiration pneumonia with intravenous (IV) antibiotics and fluids.

On discharge, you note on the discharge summary that the IV fluids had been stopped after a best interest discussion. ‘Do not attempt cardiopulmonary resuscitation’ (DNACPR) discussions have taken place with his family; this was shared with the local ambulance service and the family took a copy of the DNACPR form home with them.

Daya is discussed at the practice palliative care meeting. The district nurses are concerned that he appears to be agitated and that his breathing has become noisy due to respiratory secretions, which his family are finding traumatic. They feel that the goals of care should focus on symptom management and comfort. He dies peacefully five days later.

You issue the death certificate the next day, which helps the family to arrange his cremation in line with their spiritual beliefs.

Source: This is a modified version of the GMC end-of-life care illustrative case.³

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.

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 carer(s) gain and build support from networks with their community.

Try, if 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 eLearning to help consolidate and build on knowledge gained in the workplace. You can find an eLearning module(s) relevant to this topic guide at elearning for healthcare. For GP registrars, your specialty training programme should offer case-based discussions where end-of-life care can be shared.

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 you to also appreciate variation across age, gender, diagnosis, disability, sexuality, culture and spirituality to enable individualised care.

Consider people’s supportive networks that are available to help increase their resilience and wellbeing while they are not in direct contact with health and care professionals. Furthermore, be cognisant of your own wellbeing. Dealing with distress and dying can be very rewarding but also emotionally draining. Explore options in how you debrief, destress 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.

Applied Knowledge Test (AKT)

• Management of end-of-life symptoms such as pain, breathlessness, nausea and vomiting
• End-of-life planning such as advanced care
• Death administration

Simulated Consultation Assessment (SCA)

• A man with metastatic bowel cancer wants to discuss his ongoing care
• Phone call: a 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 chronic obstructive pulmonary disease (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

References

1. https://www.gmc-uk.org/professional-standards/the-professional-standards/treatment-and-care-towards-the-end-of-life
2. https://www.gov.uk/government/publications/dwp-factual-medical-reports-guidance-for-healthcare-professionals/e5b3b502-9067-4b20-93c0-1006d9cb0edb
3. https://www.gmc-uk.org/professional-standards/the-professional-standards/treatment-and-care-towards-the-end-of-life