Communication with the patient
Patients who are approaching the end of their life rely on effective communication about their health. This includes information about their condition, prognosis and treatment options, which is essential to help them make informed decisions about their future care. Our evidence shows that in many cases this communication does not happen adequately or at all.
We found that opportunities to have conversations about a patient’s prognosis and end of life planning were missed. This included limited discussions about patients’ wishes, such as where they wanted to die, their treatment preferences and who they wanted involved in decisions about their care.
These casework findings are echoed in survey evidence about a lack of early conversations about approaching the end of life. The most recent National Audit of Care at the End of Life (NACEL) survey found that just 18% of patients had talked about personalised care and support plans (including future care planning and advance care plans) before their final admission to hospital.
In one case, we found that a Trust did not communicate clearly or early enough to a patient that he had advanced and progressive cancer. Medical notes said he might not be able to tolerate cancer treatment and was likely to die soon. But there were no clear conversations about prognosis and the fact that treatment might not be possible. This lack of communication meant he and his family had limited opportunity to prepare for his death.
General Medical Council guidance states that doctors must be considerate of those close to the patient and be sensitive and responsive when providing information and support, while respecting the patient’s right to confidentiality. It emphasises the importance of establishing with the patient what information they want to share, with whom and in what circumstances.
In some cases, despite patients having sufficient capacity, we found there had been no discussion with them about family involvement or information‑sharing preferences. As a result, families were not informed and left unprepared, even if it was likely the patient would have wanted to keep their family informed. It meant families missed the opportunity to spend meaningful time with their loved one in their final days.
Advance care planning
Advance care planning is a voluntary process of person-centred discussion between an individual and their care providers about their preferences and priorities for their future care. It takes place while the person has the mental capacity for meaningful conversation. The process is likely to involve a number of conversations over time and must always have due consideration and respect for the person’s wishes and emotions. As a result, the person should experience a greater sense of involvement and the opportunity to reflect and share what matters most to them.
Examples of good practice exist and tools such as the ReSPECT process, Gold Standards Framework and accompanying forms are widely used to support discussions.
In 2022, the Government published the Universal Principles for Advance Care Planning. It sets out six high-level principles for advance care planning in England:
- The person is central to developing and agreeing their advance care plan including deciding who else should be involved in the process.
- The person has personalised conversations about their future care focused on what matters to them and their needs.
- The person agrees the outcomes of their advance care planning conversation through a shared decision-making process in partnership with relevant professionals.
- The person has a shareable advance care plan which records what matters to them, and their preferences and decisions about future care and treatment.
- The person has the opportunity, and is encouraged, to review and revise their advance care plan.
- Anyone involved in advance care planning is able to speak up if they feel that these universal principles are not being followed.