End of life care

When treating a patient who is close to death, clear communication and collective decision-making are as important as any clinical intervention

Denying death, by being uncomfortable talking about it, means that it can be hard for healthcare professionals to have the difficult conversations with patients and their families that are necessary at the end of life.

A recent survey of nearly 400 Medical Protection members [i] found that just over half (55%) of respondents feel comfortable discussing dying with their patients. This sense of unease is further compounded by time constraints, with only just over 20% of respondents saying they felt “very confident” that they had adequate time to discuss end of life care with patients and families.

Family expectations

Dealing with imminent death is understandably an often distressing time, and families may have unrealistic expectations of what can be achieved with regards to the type of care that is provided and the medical support that is available. One Medical Protection member who responded to the survey said there were “multiple meetings with family members, senior staff and the palliative care team. There was an ongoing unwillingness from the family to understand or accept the terminal diagnosis, even though they had been aware of it for months beforehand, and this led to the situation frequently feeling hostile. Ultimately, family and staff remained civil, but had very different opinions”.

Another member said the fear of litigation, and lack of trust from patients’ families, was ever-present: “The medical and nursing profession all fear being sued by angry families who have unrealistic expectations and strongly believe that we are withholding treatments in order to ration scarce resources for other more deserving patients.”

Many other respondents reported having to go through the courts, or consult their NHS Trust legal team, before commencing palliative care.

A doctor may believe they have communicated essential information, but it may have been done in such a way that patients and their families have not heard or understood it, particularly if they are feeling distressed or vulnerable. It is important to be aware of this, and to repeat information and check understanding.

The GMC’s Treatment and Care Towards the End of Life says: “It is important that you and other members of the healthcare team acknowledge the role and responsibilities of people close to the patient. You should make sure, as far as possible, that their needs for support are met and their feelings respected, although the focus of care must remain on the patient.”[ii]

What can doctors do to mitigate complaints?

Anticipating is the watchword in palliative care: anticipating what will happen and what to tell patients and their relatives. Just because you may have seen a certain condition or procedure many times before, it doesn’t mean that the patient or their relatives will know what may happen. Anticipatory prescribing is also important – perhaps getting drugs and prescriptions ready in anticipation of what will be needed in the coming days, or even hours.

Part of the anticipating process is discussing end of life care plans in advance, rather than when the patient is acutely unwell. Patients are usually open to having such a conversation – it can put their mind at rest and allow them some control in their final days and hours. Doctors can fear upsetting the patient and may be reluctant to initiate such a discussion in advance, but it does help. A reluctance to discuss death within families can result in relatives being unaware of the patient’s wishes and mean that they don’t know how best to help or offer support if a patient loses capacity.[iii] 

It is also important for healthcare practitioners to recognise that relatives may associate a lack of compassion with poor clinical care. Perceptions of brusqueness amongst staff could make the family feel that their experience is not valued, and that the care their relative received was suboptimal. Being mindful of each individual situation and respecting the emotions of both the patient and the family can go a long way in ensuring that end of life care is delivered in a professional, but ultimately caring manner.