Rachael received a form from D with details of her wishes for end of life care as they had discussed at their earlier meeting.
Rachael's GP must be contacted if Rachael has any condition that deteriorates rapidly (within a few hours). Rachael's GP can be contacted at any time. The GP will determine what action needs to be taken and whether an ambulance needs to be called. Rachael's PAs can also call an ambulance at any time if they feel that Rachael's situation is precarious.
If Rachael is admitted to hospital her PAs are advised to inform the Lung Clinic team.
The Long Term Ventilation Service should be contacted if Rachael has problems with secretions or breathing. This is an office hours service only, contact GP at other times.
If Rachael has problems with pain, uncontrolled anxiety or unrelieved breathlessness despite cough assist or ventilation, then the Macmillan Nurse should be contacted.
Rachael's PAs are to act as communication advocates on her behalf regarding her need for medication.
Immediate action must be taken if there is an emergency situation where Rachael cannot clear secretions or cannot manage her airway. The cough assist and the NIV must be used in these situations.
If this does not improve rapidly, call an ambulance (they can provide controlled oxygen) or transfer Rachael to hospital.
Medication will be required if secretions or breathing symptoms do not improve with mechanical intervention, Macmillan team or GP must be contacted.
General deterioration can occur slowly over time with an increase in poorly controlled symptoms, for example pain or breathlessness. Depending on the symptoms, the ventilation team should be contacted for breathing and secretions difficulties, the Macmillan team should be contacted if pain or anxiety is present.
Rachael's GP, the Macmillan team and the ventilation team will assess and refer Rachael for hospice care if necessary.
If Rachael is admitted to hospital or hospice, cough assist, ventilators and masks/tubing must be taken with her at the time of admission/transfer.
All paperwork with Rachael's care preferences/advocates must travel with her to whichever destination. Macmillan and ventilation team should be informed of any admissions or transfers if possible.
