Since stroke care is care for very sick patients, we face this situation at least every week: to withdraw “life support” and let the patient die. So assume a patient (in our case a terminal mitochondriopathy patient with resistant status epilepticus) that eyeryone (including – by advance directive – the patient) has agreed will, may and should die. We discuss the practical aspects of care in these end-of-life situations.
Some certain goals in this terminal phase of care are:
- The patient should not suffer (too much) hunger, thirst, pain, dyspnea
- The relatives should not suffer (too much)
- The team should not suffer (too much)
- It should not take too long (this pertains to all three previous goals)
- Religious and personal final requests should be met.
There is some controversy about whether the patient should be kept from fear, should remember the experience (or get some benzos to forget), should be allowed to be awake at all.
How do patients actually die? Of course, that depends, but in Neurology, most of them aspirate continuously until pneumonia takes over and then (through infection) some cardiovascular complication does it (like pulmonary embolism, arrhythmia, CHF decompensation). If you want to let this take it’s course, you will reduce your respiratory care, not suctioning to often, giving Morphine and Oxygen ad libitum. Take your time to increase the MSI dose until the patient breathes peacefully, pupils are small and the heart rate shows that stress is under control. If anxiety is predominant add benzodiazepines. As for liquids, the problem is not dehydration (this actually promotes the dying process) but thirst and dry mouth is – so you should add mouth rinses and morphine so that thirst is under control. If the process takes longer than expected (or hoped), lack of nutrition becomes important through it’s effect on immune reaction, but hunger should not appear (again, Morphine does the trick).
You cannot hope to predict the time of death, since you never know the precise pathophysiology, so call religious services, relatives and everyone else required by the patient as early as possible. Leave room and time for all the people to be able to tend to the patient. Show up from time to time, but don’t keep them from suffering – the death of a loved one is something you cannot make a pretty experience through empathy. Tears, moans and crises are normal and should be met with empathy and professionalism.