Settling into your role as a newly-qualified GP brings a sense of achievement and the satisfaction of working independently. It is rewarding to be able to put your medical knowledge into practice to help patients and form what you hope will be long-lasting relationships with them and their families.
However, consider the scenario where you have referred an elderly gentleman with worrying symptoms and receive the sad news that the cause is an advanced cancer and the only treatment available is palliative care.
You realise that, in addition to planning his medical care, you will need to provide practical and emotional support to him and his family throughout what will be a difficult time.
When this happens for the first time it can feel like a significant weight on your shoulders and you may have many questions and concerns, as well as emotions. The following article aims to address some of the challenges when dealing with a death for the first time.
The lead up to a death
Initially, colleagues in secondary care are likely to take the lead on diagnosis and treatment decisions with regards to cancer care; however you will play a central role in helping the patient and their family come to terms with a terminal diagnosis.
Effective communication, planning and multidisciplinary team working skills will be essential to provide the best quality end-of-life care, as you will need to liaise closely with practice colleagues and other teams including palliative care, community nursing and Macmillan nurses.
Your key priorities for delivering end of life care are set out in NICE guidance, and include:1
- Recognition of the end of life, particularly in the last few days
- Developing a tailored, compassionate and individualised care plan
- Making decisions in accordance with the patient’s wishes
- Shared decision-making
- Listening to relatives and carers
- Sensitive, empathic communication
- Good symptom control and maintaining hydration
- Anticipatory prescribing.
It is clear that effective communication, shared decision-making and excellent documentation are common to all aspects of providing care and support in the lead up to a patient’s death, and attention to consent and capacity issues is particularly important in ensuring that a patient’s autonomy is prioritised.
A patient may wish to appoint a Lasting Power of Attorney (LPA), which allows the nominated person to make future health and welfare decisions on their behalf, should they lose capacity.
Alternatively, the patient may wish to draft a document setting out their wishes for future treatment, including for example an Advanced Decision to Refuse Treatment (ADRT).
These are complex and emotive issues and patients are likely to need support from their GP and the wider team to ensure their wishes are respected and communicated to other organisations, for example the ambulance service or urgent/out of hours care.
Various documents and forms may also need completing to allow the patient to access important benefits and support such as housing or social care.
Preparing the family
The patient and their family are likely to require increased support at this difficult time, whether that is simply keeping them up to date with treatment plans or dealing with any psychological or mental health issues that arise.
They are also likely to have many questions about what happens during the terminal phase, such as how to know when death has occurred, what to do at that moment and whom to call.
Following a patient’s death, it is important to complete the death and cremation paperwork without delay. This may include the Medical Certificate of Cause of Death (MCCD) (if you attended the patient in their final illness and in the 14 days prior to the death or viewed the body after death).
This will allow relatives to register the death and progress with funeral plans.
Cremation paperwork may also need completing, and again this should be done without undue delay.
In addition, the wider primary care team and other agencies involved in the patient’s care should be informed of the death as soon as possible to ensure that distressing mix-ups are avoided, such as appointment reminders being sent to the family.
Supporting the family after death
The patient’s family may also be patients of your practice and may need support as a result of their bereavement. This may be in the form of external counselling, and can be provided by charities such as Cruse.
Additionally, those left behind may have prioritised their relative’s terminal care over their own health needs and now need to focus on their own health. Sleep and psychological problems are common during the grieving process and bereaved patients may need your assistance in addressing these.
While your duty of confidentiality persists after death, the GMC does support the sharing of information with relatives if there is no reason to suspect that the patient would have objected, and if the information is more likely to be of benefit to the patient’s partner, close relative or friend rather than cause distress.2
However, before disclosure, you should always consider the purpose of doing so and whether any third party information should be removed.
Where possible, it is a good idea to arrange a meeting with the palliative care team to identify aspects of the care that went well and consider what may have been done better. As the end-of-life period is a challenging and emotive time for the family, this is particularly important as any perception of shortcomings in care may result in a complaint if not addressed.
If you do receive a complaint about your care, then your response should be sensitive and demonstrate an understanding of the difficult circumstances. However, we would always recommend contacting your medical defence organisation in the first instance to discuss the situation.
Don’t forget to look after yourself too
Finally, the death of a patient can have a significant impact on a GP - particularly if the doctor has other stressors in their professional or personal life - and not looking after yourself could impact on the quality of care you provide to other patients.
Balancing the support and counselling needs of a dying patient and their relatives with a self-awareness regarding your own ability to deal with these difficult issues is a key skill for a GP, so do not hesitate to seek support from colleagues and peers if you need it.
- Dr Ewen Ross is a medico-legal adviser at Medical Protection
- NICE. Care of dying adults in the last days of life. NG3. London. NICE, December 2015
- General Medical Council, Confidentiality (2009), paragraphs 70-72