According to the NHS Improving Quality data, around half a million people die each year and 75% of these are expected deaths.
This means that in most cases people should have the opportunity to think about their wishes and the care that they would like at the end of their life.
An independent review of the Liverpool Care Pathway has found evidence of a lot of good end of life care.
However, it has also found inconsistencies with people dying in pain or not in a place of their choosing.
Although people have differing ideas of what a good death looks like, there are common themes that can be identified.
Most people would like to be in control of their care, choose the place in which they pass, be pain free and comfortable and to be with their loved ones.
Why aren't peoples wishes being met?
The most common reason that people's wishes are not upheld is simply because they are not known by the caregivers.
Conversations about end of life care are not happening early enough.
This is where Advance Care Planning can help.
What is an Advance Care Plan?
Advance Care Planning is a process that supports people at any stage of their health journey.
It is a means of helping people to think about and plan their future and to document their wishes.
This allows their wishes to still be followed even if they lose their ability to communicate.
What sort of information should be recorded in an Advance Care Plan?
- Choices about treatment
- Choices about non treatment
- Preferred place of care
- Decisions about hospitalisation
- Information about loved ones and their roles as Attorneys or Advocate for the patient
Advantages to having an Advance Care Plan
Having an Advance Care Plan in place empowers the person receiving care and helps them to maintain control at a time they often feel powerless.
This also helps to:
- Reduce uncertainty
- Prevent unwanted treatment
- Prevent unnecessary and unwanted hospital admission
- Determine future goals for the person at the end of their life
Initiating the conversation
Nurses are often the health professionals who can instigate these early conversations as part of their nursing role.
In fact, the NMC underpins this in the Code under the domain of 'Prioritising People'.
Nurses should put the interests of their patient first.
This includes ensuring they are treated as an individual, with dignity, and that they are listened to and their preferences and concerns responded to.
Barriers to Advance Care Planning
The person may not want to engage in conversations about death and dying and this should be respected.
The person may have deteriorated to the point where discussions can no longer take place, this is why early discussion is key.
They may not have reached a point in their illness where they feel accepting of death and may be emotionally unprepared for such conversations.
Pressures on nursing staff may mean that they do not have time to devote to a sensitive and time consuming conversation.
These matters cannot be rushed and this can be a barrier to nurses beginning discussions.
Surroundings may be too clinical and not conducive to sensitive and private conversations.
This is particularly true of hospital wards behind a curtain.
Family members may be in denial and unwilling to think about their loved one dying.
This may prevent them from having conversations about what their relative would want.
Don't be afraid to speak to your patients or residents.
More than three quarters of people living with cancer have thought about the fact that they may die from their illness.
Worryingly, only 8% of these people had spoken to their healthcare team about it.
Nurses should look for cues that people are trying to talk about their feelings and thoughts and take every opportunity.
Although Advance Care Planning is not easy, it can be the difference between a good death where someone's wishes are fully met and a bad experience.
There is only one chance to get it right.