End of life care
The death of a loved one is an extremely difficult time. The intensive care unit can be a confronting environment and present some unique challenges to families visiting their loved ones at the end of their lives. We are dedicated to providing compassionate care for patients and their loved ones throughout their journey, particularly when patients are in the dying phase.
Sometimes death comes suddenly and unexpectedly. Attempts made to revive a patient who has suddenly collapsed can be very difficult to witness. Often when staff commence resuscitation of a patient family will be asked to step out of the bed space. At times however family may stay present or be brought back in, especially if it becomes apparent that the patient is dying, to allow a chance to say goodbye. If family are present during resuscitation efforts a member of staff will be dedicated to remaining with you to provide explanations and support.
At other times patients may reach the end of a long journey with illness, or simply become increasingly frail with old age. In these circumstances, the team may advocate for a change of direction of care away from invasive measures aimed at recovery and towards comfort at the end of life.
A wide variety of procedures, machines and medications in the intensive care are used to support a patient’s organs, for example a ventilator supporting the lungs and breathing. These measures can provide time for targeted interventions such as antibiotics, surgery or sometimes simply time itself to enable the body to recover. See ‘machines and tubes’ for more information on some of the equipment you may see. These measures can however be unpleasant and burdensome, for example the breathing tube required to be on a ventilator often requires sedative and pain medications and a degree of unconsciousness to be tolerated. We must weigh up the risks and benefits of such invasive interventions and in some circumstances the probability of meaningful recovery will not justify the burden associated with them.
Despite all the advances in medicine, sometimes it becomes clear that a patient is not going to be able to recover. When this occurs we will talk to families – and patients if they are awake – about ceasing interventions that are not going to provide benefit and may be causing discomfort. We always continue to provide care, comfort and dignity.
Knowing when to transition to end of life care depends on the individual patient’s circumstances and values. Patients approaching the end of their lives on the ICU often have altered awareness. Therefore we talk with families about what they think the patient would want in this situation. These conversations can be difficult and lead to feelings of great responsibility among families. The ICU team will not ask you to decide when to withdraw life sustaining treatment. Rather, we try to gain insight into the life and values of the patient who cannot speak for themselves, from those who know them best, to better understand what they would wish for. We can then advise on the most appropriate course of action moving forward.
The dying process
Many people have never witnessed someone’s final hours and death. The process is different for everyone but there are some physical signs that are common, particularly once artificial supports have been removed. In the ICU we pay close attention to any symptoms that may arise and treat them aggressively to ensure comfort and dignity.
Patients will usually progressively become less conscious as they approach death. Sometimes there can be a degree of restlessness or agitation – if needed we will give medications to keep the patient calm and comfortable. Similarly we will carefully monitor for any signs of discomfort or pain and give pain relief as needed. Whatever someone’s apparent level of consciousness we would encourage you to spend time with, talk to and touch your loved one as you feel is right for you. Please don’t worry about being in the way of staff, we will let you know if we need to do something for the patient.
Another common experience is that a person’s breathing will change in their final hours. There may be periods of rapid breathing and at other times long pauses. If there is any concern of breathlessness we will give medications to manage this. There may be added noisiness such as gurgling or rattling from saliva as swallowing becomes less effective. This can sound unpleasant to loved ones but does not bother the patient. Often simply repositioning their head can help.
Whilst we pay close attention to the comfort of the patient and providing support to their loved ones, we also try to give privacy and alone time to families and so may step out of the immediate area. We are always happy to be called over if you have any concerns or questions. Our pastoral care team can also provide support and companionship, particularly as questions and emotions arise around the end of a patient’s journey.
When patients do die, a doctor will conduct a brief examination to confirm death. You are welcome to spend as much time with your loved one as you wish. Our team can provide information on the logistical processes after death as needed.
Occasionally patients die in such a way that it may be possible for them to become organ donors. Some are on the donation register having already expressed this wish. If this is potentially a possibility for your loved one, medical staff and donation specialist nurses will talk to you further about what is involved.
You can find more information about organ donation on our page ‘Donate Life‘.