Continuing Professional Development: Pre-hospital management of end-of-life care

Peri-mortem

End of life care (EoLC) describes the patient who is dying and in their last 2–3 days of life. As healthcare professionals we can often recognise the sick patient and the patient who we think is close to death. Classic supporting feat ures include shock like symptoms of tachycardia, hypotension and hypoxia. Of course not all patients do die in the ‘predicted’ time frame, so putting in place a system of care for monitoring will be part of the care plan for the patient. Where the patient has signs or symptoms that suggest they may be in the last days of life, they should be monitored for further changes to help determine if they are nearing death, stabilising or recovering. This may be a difficult decision for the paramedic, but the process of those close to dying sometimes may take hours, so the decision is about making sure the communication agenda is set, the patient and family are supported and that symptoms are minimised allowing care to be transferred to alternative care providers, such as district nursing teams and urgent care (out-of-hours) practitioners.

In the last days of life, the people important to the patient should be given the opportunity to discuss, develop and review the individualised care plan. An example may be that the original thoughts were to die at home, but as reality of death approaches, the preferred choice may be to die away from the home where their loved ones will continue to live. As a healthcare professional, you are allowed to update the care plan; however, this should be documented with the reasons why any changes have been made. Communicating this back to the in-hours GP is very useful and can be achieved by direct communication in-hours, using single point of contact centres to ‘fax’ details across (out-of-hours) or use of urgent care practitioners who can access the patients NHS spine care record and update this accordingly.

The team

The possibilities of a patient dying are often discussed months in advance and most GP practices have a monthly ‘Gold Standards Framework’ also known as a palliative care meeting (Free et al, 2006). This is normally attended by the local McMillan Nurse Specialist, Community Matrons and practice based practitioners. Patients are placed onto a palliative care register which is mirrored on their NHS spine care record. They are categorised as green, amber or red. If the patient has a prognosis of months to live, they are categorised as green. At the green stage, they may be considered for a form called a DS1500, which is a GP form to fast track them to high rate benefits. This category is characterised with the patient being clinically unstable with frequent exacerbations. The amber category is for those with a prognosis of weeks, and are considered as deteriorating. The red category is those for a prognosis of days and the patient would be considered in the dying and terminal phase of their illness. The intuitive ‘surprise’ question can be useful to help categorised this. For example – ‘would you be surprised if the patient died in the next few days?’ vs. ‘would you be surprised if the patient died in the next few months’. Common conditions for entry on the register include progressive cancer, COPD, heart failure, dementia and fragility. This is a prime opportunity to spot check the progress of the patient's overall care. It can be used to check their care plan for the patient's death and where required, complete the resuscitation order (this is usually done for those on an amber status). A paramedic can always suggest or check whether the patient has been discussed at the GSF meeting – this will be coded in their NHS spine care records.

Signs and symptoms near the end of life

Signs such as agitation, Cheyne-Stokes breathing, deterioration in level of consciousness, mottled skin, noisy respiratory secretions and progressive weight loss may give you clues that death is approaching. Symptoms such as increasing fatigue, reduced desire for food and fluid and deterioration in swallowing function may also help you recognise this. Finally functional observations such as a change in communication, deteriorating mobility or performance status, or social withdrawal may also provide insight into the likelihood of death occurring.

Anticipating care needs

As part of an individualised care plan which will include personal goals and wishes, preferred care setting and resources needed, the need for anticipatory care should be discussed and organised. Anticipatory care needs include preferences for symptom management including management and maintaining hydration and post death care requirements (often reflecting religious beliefs). Anticipatory medicines can also be part of this plan. They are prescribed on a ‘just in case’ basis to alleviate signs and symptoms which may cause discomfort or prevent dignity in the final stages of life. As they are already prescribed, there are no legal obligations preventing the paramedic from utilising this prescription. Generally, there is a sub-cutaneous medicine for pain (e.g. diamorphine), one for nausea/vomiting (e.g. cyclizine, haloperidol or levomepromazine), one for terminal restlessness/agitation (e.g. midazolam or oral lorazepam) and one for moist secretions (death rattle) (e.g. glycopyrrolate/glycopyrronium or hyoscine hydrobromide). Additions could include medications for seizure (e.g. diazepam). The use of a syringe driver will help deliver these over hours, but they may also be ‘written-up’ for a stat dose, which may be more helpful in the short term for the paramedic. Syringe drivers are often accessed via the palliative care nurse team or district nursing services. The ideal time to organise this is not in the acute crisis as it can often take several hours, and is often faced with complications such as pharmacists either not open at the required time to get the drugs, the medications needing to be ordered in, or if a syringe driver is needed, to locate and have it delivered/set-up.

At death

For ease of process when it comes to expected death, certification of death in the community, a doctor at their registered practice must have seen a patient recently. The English law does not require a doctor to confirm death has occurred or that “life is extinct” – this can be done by the paramedic. The law does not even require a doctor to view the body of a deceased person. No doctor is required to report a death to the police. It does however require the doctor who attended the deceased during the last illness to issue a certificate detailing the cause of death. Therefore, it is unlikely that an out-of-hours doctor who does not know the patient will add to the care in this situation. Where no such regular doctor has attended the deceased recently, this would be classified as unexpected (‘sudden’) death.

For the expected death patient, an out-of-hours practitioner or doctor does not necessarily need to see them prior to death, unless this is to address a specific sign or symptom. If a death has occurred and is expected, once death is recognised (life is extinct), the body can be removed to an undertaker. Unexpected ‘sudden’ deaths should be reported to the coroner (usually via the police) using local policies. Case law exists to confirm that a NHS general practitioner do not have a contractual obligation to attend upon the body of a patient declared to be dead and would be a duplication of resources if recognised as life extinct by a paramedic or other healthcare professional. The wider health system, due to demand, would be acting correctly by prioritising the needs of their living patients. This does not negate the ethical and moral responsibility to make the experience of bereavement as gentle and easy as possible for relatives and friends, although there are various other support mechanisms available to family.