When my time comes to die, I want those around me to notice that I am dying, to stop any unnecessary drips and tests and to ensure that I am pain free, not frightened, nursed with compassion in a safe place, with those whom I love also supported and cared for.
The Liverpool Care Pathway will do exactly this…and has immeasurably improved the care of people in their final days since its introduction in the 90s.
In recent weeks there has been a huge amount of angry and inaccurate press about the Pathway, and some real clarity is now needed for everyone to understand what is going on, to reduce the terror and concern that the press is causing.
The Pathway is a simple protocol that was devised to support better end of life care for people who are in their final days in hospital, in a care home, in their own home or in a hospice. This is difficult and important work, and staff need supporting and reminding about appropriate conversations, how to relieve pain and other symptoms, what helps and what may no longer help. The aim is to bring comfort and peace, not to prolong or shorten the dying phase.
The first step is for doctors and nurses to recognise that someone is close to the end of their life. The patient is probably sleepy, barely eating if at all, hardly drinking, bed bound and low in energy, with an advancing underlying illness that is no longer responding to treatment.
The next step is for doctors and nurses to communicate their fears and concerns with the patient if possible and always with those close to the patient, that time might be very short and that care should now focus on comfort, stopping unnecessary treatments that may no longer be helping.
This is about allowing a natural death and promoting comfort if there is pain, restlessness, nausea or problems with breathing.
The Liverpool Care Pathway simply prompts doctors and nurses to have the right conversations and follow the above steps.
The Liverpool Care Pathway does not tell doctors and nurses what to do, what to stop and what to start. It does not tell doctors to take down drips or to start sedation. All of these are individual decisions based on patient and family wishes, their symptoms and needs.
However it is clear that protocols and guidelines need to be used with wisdom, and as with any tool, training is needed. What we need is more training to improve the confidence of doctors and nurses to diagnose that the terminal phase has been reached, to communicate sensitively and honestly with patients and families and to know how to achieve best comfort.
The plea should be not be for the Pathway to be abandoned, but for doctors and nurses to get better palliative and end of life training from their student days onwards . . . . and perhaps for all of us to remember that we are mortal and will want a peaceful, safe and comfortable death one day!
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