Facing the end of life due to a terminal illness, such as cancer, dementia or other conditions, can be an incredibly emotional and uncertain time for both individuals and their loved ones. While it can be difficult to think about the final stages of life, having a clear understanding of the End of Life Care Pathway can provide reassurance and help reduce anxiety. Planning ahead—both logistically and emotionally—can help ensure that you and your family feel supported and prepared.
In this article, we will guide you through what the End of Life Care Pathway involves, who it applies to, and what you can expect. We will also discuss the various professionals involved in the care process, how to plan for the future, and the support available to you at this challenging time.
At Prestige Nursing & Care, our focus is on providing expert, nurse-led care to people in the comfort of their own homes, ensuring dignity and peace of mind for both patients and their families.
What is end of life care?
End-of-life care is required when someone is going through the final stages of an incurable illness and requires specialist care to manage their pain and comfort as they approach the end of their life. Depending on the person’s condition and the speed at which their health deteriorates, this care could last several weeks, months, or years.
End-of-life care is difficult to talk about if you know you will need it yourself in future, or if a loved one requires it, but it is important to plan ahead to ensure you receive the high-quality care you need and deserve. This will not only help to maintain your own well-being but can help your family members feel that your wishes are being prioritised.
The end-of-life stages of care can involve a lot of difficult emotions, and challenging physical symptoms that can be hard for family members to watch. But, enabling someone with an incurable illness to die with dignity and without excessive pain is incredibly important, both for the person and for loved ones who are present.
What is the end of life care pathway?
The End of Life Care Pathway is a framework designed to ensure that individuals who are nearing the end of their life receive the care, support, and attention they need. It is a personalised approach that considers the individual’s physical, emotional, and psychological needs, as well as their preferences for the final stages of life. This pathway provides guidance to healthcare professionals, ensuring that care is delivered in a respectful and compassionate manner and that both the person receiving care and their loved ones feel supported throughout the process.
The pathway is designed to be flexible, as everyone’s end-of-life experience is unique. It takes into account the person’s wishes, whether that’s receiving care at home, in a hospice, or in a hospital setting. The goal is to enhance the quality of life for individuals during their final stages, ensuring they remain as comfortable and pain-free as possible, while also providing emotional and practical support to family members and caregivers.
Key elements of the end of life care pathway include:
- Preferred location: Whether the individual would like to be at home, in a hospice, or in a hospital.
- Treatment preferences: Including how they wish to be treated and their preferences for comfort care.
- Resuscitation decisions: Whether they want to be resuscitated or not in the event of a medical emergency.
- Family and decision makers: Identifying who should be present during this time and who will be responsible for making decisions about care.
- Specific wishes: Any personal desires or requests for the final stages of life, such as favourite music, specific activities, or the presence of particular individuals.
- Support for family: Addressing the emotional and practical support needs of family members caring for the person during their last days.
- Religious or spiritual preferences: Any beliefs or practices that should be respected during the end-of-life process.
- Dignity and comfort: Ensuring the person can die with dignity and without unnecessary suffering, meeting any other needs they have for a peaceful transition.
What to expect from the end of life care pathway?
When the end of life care pathway is put into place, there are several aspects you and your loved ones can expect:
- Personalised care plans: Healthcare professionals will work closely with you and your family to create a care plan tailored to your specific needs and preferences. This plan may include managing symptoms, providing emotional support, and addressing any spiritual or cultural concerns.
- Pain and symptom management: One of the primary focuses is ensuring that the individual is comfortable. Pain relief, the management of other physical symptoms (such as breathlessness, nausea, or agitation), and preventing unnecessary suffering are central aspects of the pathway.
- Support for families: End-of-life care is about the individual as well as the family. Caregivers and loved ones will receive the support they need to cope with the emotional challenges, including counselling or respite care to provide them with a break when needed.
- Care at home or a hospice: The pathway can be followed at home, in a hospice, or in a hospital, depending on the person’s wishes and the care that is required. Many individuals prefer to remain at home, surrounded by family, and our team can provide care that enables this wherever possible.
What is LCP and NeoLCP?
When researching the End of Life Care Pathway, you may encounter the acronyms LCP and NEoLCP.
- LCP (Liverpool Care Pathway): This was a care plan introduced in the UK to support patients at the end of their lives by focusing on their well-being. While the LCP had some positive intentions, it faced widespread criticism. Many felt it lacked clarity and failed to adopt a truly personalised approach to care. Due to these shortcomings, the LCP was phased out following a review.
- NEoLCP (National End of Life Care Program): Introduced in 2014 as a replacement for the LCP, the NEoLCP overhauled end-of-life care in the UK. This program prioritises a more person-centred approach, ensuring that the unique needs, preferences, and wishes of terminal patients are fully integrated into their care plans. The NEoLCP is the framework currently followed by health and social care professionals to deliver compassionate, high-quality care for individuals in their final stages of life.
The transition from the LCP to the NEoLCP marked an important step in improving end-of-life care, with a stronger emphasis on dignity, personalisation, and the involvement of patients and their families in care decisions.
What support is available during end-of-life care?
When you or a loved one reaches the stage where end-of-life care is needed, it’s natural to wonder what additional support might be available during this challenging time. In hospital or hospice settings, much of this support is coordinated for you. However, if you are receiving care at home, it can be less obvious where to turn for help.
For those receiving end-of-life care at home, your GP can be a valuable resource. They can answer questions about the care process and arrange for community nurses, specialist palliative care nurses, or social care workers to provide support. This team can assist with managing symptoms, offering emotional and practical support, and connecting you with local resources. These may include complementary therapies, pain relief options, local support groups, or other services designed to enhance comfort and well-being.
Many people who choose to receive care at home during their final months, weeks, or days find significant comfort in having professional carers available. Carers can provide a range of support, from personal care and mobility assistance to companionship and overnight monitoring. For those who feel anxious about being alone, having a carer visit ensures bespoke support and peace of mind. This can be particularly reassuring for managing pain, addressing unexpected needs, and offering emotional support.
At Prestige Nursing & Care, we understand the importance of tailored, compassionate care during end-of-life stages. Our bespoke home care services provide a calm and supportive environment, ensuring dignity and comfort for individuals and their loved ones. From personal care to specialist palliative support, we are here to make the end-of-life care process as seamless and comforting as possible.
If you’re exploring home care options, contact our expert team to discuss your needs and create a personalised care plan that supports you and your family through this difficult time.
Funding and financing end of life care at home
You may be entitled to either healthcare funding, social care funding or Government funding to contribute to the cost of care at home. If you are faced with having to finance your own home care (known as self-funding care), there are initiatives available to you. These include care fees, annuities or equity release schemes that could provide the funds you need for your care and support.
Expert end of life care in your own home
For 80 years, Prestige Nursing & Care has been trusted by its clients and their families to provide competent and compassionate end-of-life home care. Our care is focused on managing your overall well-being in the final stages of life in the place you love most—their own home.
Call us on 0808 239 1525 and our friendly care experts will discuss your care and support needs. You can also fill out our online enquiry form or email info@prestige-nursing.co.uk. We provide impartial guidance and advice so you make the right choice for you and your family.