Guidelines for palliative care
Coming to the end of life can be a difficult time for everyone involved. There are lots of important decisions to make for the individual’s care and also what will happen after they die. As well as the practical elements of palliative care, a large part of this process is providing the right emotional and psychological support for the person receiving care and their loved ones.
Palliative care guidelines are used in order to limit discomfort and ensure that the care is centred around the individual, with clear communication between health care professionals, family members, carers and the person receiving care.
What is the palliative care guideline?
Created by the National Institute for Health and Care Excellence (NICE), the palliative care guideline details how someone within the last few days of their life should be cared for. The guideline is centred around:
- Planning end-of-life care with the individual, their family and healthcare professionals
- Recognising when someone is in the last days of their life
- Staying comfortable – physically and emotionally
The focus of the guideline is very much about maintaining the dignity and comfort of the individual and involving them as much as possible with their care plans.
What is NICE and what do they do?
The National Institute for Health and Care Excellence (NICE) was created in 1999 as a national body dedicated to improving health and social care services across the UK. They create evidence-based recommendations and guidelines for healthcare workers and practitioners to carry out the very best care, including within the NHS and private care services. They are committed to the highest quality standards across health and care services, carrying out research and working closely with the government, GP surgeries, hospitals and local authorities.
Replacing the Liverpool Care Pathway
The Liverpool Care Pathway (LCP) was a set of guidelines created during the late 90s aimed at providing the best quality end-of-life care for those in their final days and hours of life. It was created by the Royal Liverpool University Hospital in conjunction with Marie Curie Palliative Care Institute and was designed to ensure that death was as dignified and pain-free as possible, and invasive treatment was stopped if it would not prevent death. It was adopted by many hospitals and care settings in the UK, and at the time was widely regarded as best practice for end-of-life care.
Utilising a model of care used within hospices, the LCP was a guide for practitioners when they were delivering end-of-life care. It included points such as:
- Considering whether particular treatment was necessary in a persons’ final hours, for example, taking blood pressure readings.
- If fluids should still be given, regardless of whether the individual is able to eat or drink or not.
- Ensuring they are comfortable, including their position in bed, breathing assistance and mouth care for over or under production of saliva.
- The emotional wellbeing of the individual, for example religious needs or having family present.
After complaints and controversy surrounding the LCP, including national media attention, the LCP was dissolved in 2015 and new palliative care guidelines were created by NICE to combat the concerns raised. They addressed the involvement of the individual and their family, as well as additional healthcare professionals as to when end-of-life care should commence. They also looked at whether withholding medication and hydration was indeed the right thing to do, and whether in fact this could cause more suffering and discomfort to the person who is dying.
What are the main palliative care guidelines?
Published in 2015, the NICE palliative care guideline addressed the concerns raised by the LCP and is centred more around the individual and their family. There are four main recommendations in the palliative care guideline:
Where possible, it is important that the individual is involved with their end-of-life care plans. They should be included in all conversations regarding what will happen, and their wishes should be adhered to – for example, if they want to die at home without any further medical treatment or if they have particular religious requests. If a person is unable to make these decisions due to capacity, their Power of Attorney should do this on their behalf.
Recognising when someone is coming to the end of their life
If someone has a terminal illness and begins to decline, they should be closely monitored for symptoms that show they are in the last days of their life. They should be assessed on a daily basis as to whether their condition has worsened or improved. If they are deemed to be at the end of their life, this should be fully explained to both the individual and their loved ones. Sharing all or limited details is at the discretion of the individual and their care team.
There are a variety of symptoms that should be closely monitored when someone is receiving end-of-life care. They are:
- Pain – this should be limited as much as possible and treated with the most appropriate pain killers or relief.
- Breathlessness – this can be related to the individual’s primary health condition or a side-effect of their condition. This should be managed effectively with pain relief or appropriate treatment.
- Nausea and vomiting – usually a side-effect of treatment or related to their primary condition. Medication can be used to help or may have to be reduced if it’s causing nausea and vomiting.
- Anxiety and delirium – can be common for those in the last days or hours of their life. This can be treated with medication or reduced by having the comfort of familiar loved ones around them.
- Hydration – dehydration can occur for those near the end of life. If they are able to and want to, the individual can have support with drinking or a fluid drip if swallowing is difficult. Oral gels and saliva replacements are also available to ensure those who are unable to swallow are comfortable.
The person’s existing medication, any new medication required and how medicine is administered should all be considered for end-of-life care. For those receiving care at home, there may be ‘just in case’ medication that is provided in advance of their symptoms worsening. These can be accessed quickly and limit their discomfort should they require extra medication at a later stage of their care.
How we can help
Here at Helping Hands, we understand how difficult this time can be for everyone involved. If you or a loved one has a life-limiting condition or chronic illness and you’d like to discuss your future plans for care at home, you can talk to our dedicated customer care team who will find out more about your requirements and arrange a consultation with a care manager local to you.
We also offer emergency care if you are reaching the last few weeks or days of your life and would like to pass away at home. If you require urgent support, we can arrange for care to commence within 24 hours of your initial enquiry. Call us today to arrange a meeting.Request a callback Email us
Page reviewed by Carole Kerton-Church, Regional Clinical Lead on November 8, 2021