At The Good Care Group we know from our experience of supporting people for over 10 years who are living with a life-limiting illness or terminal diagnosis, how upsetting and distressing it can be for all the family.
Moving at any time in life can be traumatic and a huge upheaval, but for those who are on an end-of-life care pathway, the thought of moving into a care home setting or a hospice can only add to the stress and upset they are already likely to be feeling. We know that 70% of the population would like to pass away in the comfort of their own home, but less than a quarter actually do. We are very proud to have enabled 77% of our clients to pass way in the comfort of their own home with our high-quality live-in care service, providing a specialist end-of-life care pathway that avoids admission to hospital for the last days of life.
What is palliative care?
Palliative care is treatment, care and personalised support for people with life-limiting illness, their family and friends. A life-limiting illness is one that cannot be cured and that you are likely to die from and includes illnesses like advanced cancer and advanced stage dementia. The focus of palliative care is to enable you to have a good quality of life based around your choices and wishes, whilst remaining as independent and active as possible in the time you have left. Palliative care involves managing physical symptoms, such as pain and providing emotional, spiritual and psychological support.
You can receive palliative care at any stage in your illness and it does not mean you will necessary die soon – some people receive palliative care for many months. However, palliative care does include caring for people who are nearing the end-of-life, sometimes referred to as end-of-life care.
The approach to delivering care and support is different depending on where you are in your journey. Palliative care is focused on effectively managing symptoms whilst ensuring you continue to live the life you wish and achieve your personal goals.
The purpose of palliative care is summarised as:
- To improve quality of life for the person receiving palliative care and their loved ones
- To provide relief from distressing symptoms and pain
- To support life and treat dying as part of a normal process
- It combines spiritual and psychosocial aspects of care
- It offers a support system to enable a person to live as well as possible during the palliative process
- Provides much-needed support for family members
- It does not hasten death and is focused on prolonging a life of quality and fulfilment
What is end-of-life care?
With end-of-life care the emphasis changes to ensure you can end your days as you wish whilst receiving sensitive and dignified personal care and much-needed emotional support, in the place you want, avoiding unnecessary hospital admission. The focus will be to ensure the specialised end-of-life care pathway considers a person’s comfort, carefully managing any pain, whilst ensuring the person’s wishes and preferences are met, and that end of life is dignified.
According to a report published by NICE on the impact of end-of-life care, the end-of-life care pathway should include advance care plans that involve people in making decisions about their care.
These plans should include:
- Priorities and preferences for care and treatment
- Decisions about resuscitation
- Views about how and where they would like to be looked after in their last days of life
- Who they would like to have with them
- Any spiritual or religious beliefs they would like to be taken into account
- Who they would like to make decisions for them if they become unable to make them for themselves
What is the end-of-life care pathway?
An end-of-life care pathway definition is a document that guides those who are providing care to somebody who is at the end-of-life, whether that is a family member or a care provider. The plan of care will be used when it is clear a person is dying and will have been created with the person’s choices, wishes and preferences at its heart.
The Liverpool Care Pathway, which was used by the Government to provide an end-of-life care pathway, is no longer used in provision of care following feedback from families and those who had received care, as well as the media. Whilst the Liverpool Care Pathway was aimed at providing the very best care and support to those at end-of-life, those providing care were not following it correctly due to lack of training, which lead to unnecessary suffering. One problem attributed to the Liverpool Care Pathway, and more generally in care of dying people, is a general lack of familiarity with the dying process, a lack of discussion and a lack of involvement in it.
The end-of-life care pathway now being adopted by the Government is The National Institute for Clinical Excellence (NICE) guidance for people nearing the end of their lives. The focus of their pathway is the importance of treating each person as an individual and creating a holistic plan of care to meet their specific needs.
The NICE end-of-life pathway palliative care provides clinical guidance to adults who are dying in the last two to three days of their life. The aim of the pathway is to improve the end-of-life experience by communicating respectfully with the person and their loved ones, involving them in what is happening and by maintaining dignity and comfort. In addition, the pathway outlines how to manage common symptoms sensitively to avoid unacceptable side effects, as well as how to maintain sufficient hydration in the last days of life.
Specifically, the end-of-life pathway covers:
- Recognising when people are entering the last few days of life
- Communicating and shared decision-making
- Clinically assisted hydration
- Medicines for managing pain, breathlessness, nausea and vomiting, anxiety, delirium, agitation and noisy respiratory secretions
- Anticipatory prescribing
Planning an end-of-life care pathway
Planning end-of-life care is not something any of us wish to think about. However, for families in this situation the earlier you can have an open and honest conversation about your wishes and preferences the sooner a care plan can be put in place that meets not just your care needs but addresses your choices and how you wish to live your life and be cared for, right to the very end.
A survey conducted by Dying Matters found that only 4% of people had written a plan of care that considered and addressed their wishes at the end-of-life. However, the survey also identifies the sense of relief families feel when asked about their wishes and can take positive steps to put the right care in place that meets an individual’s holistic needs.
The highly personalised and flexible support we provide from a trained and well-matched carer is proven to not only meet a person’s care needs, but also to ensure the end-of-life care pathway is followed according to a person’s wishes, ensuring a comfortable and dignified end-of-life.
Once a person’s wishes are established it will be clear their preference on where they wish to receive end-of-life care. There are several places where a person could receive the end-of-life care pathway:
Most people would choose to pass away in the comfort and familiarity of their own home, with all their treasured memories and family surrounding them. Carers are focused on not just ensuring a person’s care and nursing needs are met, but they are emotional, spiritually and psychologically supported. Having a dedicated carer who supports you on a one-to-one basis ensures they truly understand your needs and preferences at all times, whilst being able to respond efficiently to changes in your health.
In a hospice
You may decide that receiving care in a local authority or charity-led hospice is right for you. A hospice is a gentle and calming environment with teams of trained end-of-life care nurses and doctors. You will be provided with a private room, with a bathroom to ensure your privacy and dignity. Hospice nurses are also trained to provide emotional and bereavement support to a person’s family.
In a care home
Many care homes can provide end-of-life care packages. Some care homes can offer skilled nursing teams to support an end-of-life care. Like a hospice you will have your own private room, however you are not always cared for by carers and nurses specifically trained in the end-of-life care pathway. It is worth checking to see if the care home has the Gold Standards Framework accreditation, which means their staff are trained to provide a high standard of care to those at the end of life. Unlike a live-in care service, you are likely to be cared for by different carers working on a rota, who are also looking after other residents who are also at the end-of-life.
In a hospital
It is not most people’s choice to receive end-of-life care in a hospital. Whilst the end-of-life care provided in hospital will be of a high standard delivered by compassionate nurses, you are not in a familiar environment with all your comforts around you. In many cases a hospital stay at end-of-life is not a planned decision.
Our approach to expert end-of-life care
At The Good are Group we have been working with palliative care consultant, Dr Kathryn Mannix a leader in the field of expert end-of-life care and author of ‘With the End in Mind’. Our care management team has been trained by Dr Mannix to equip them with the skills and confidence to sensitively encourage positive conversations with our clients about the dying process as early in care planning as reasonably possible, whilst delivering a plan of care that respects individual wishes and preferences. We have created an end-of-life care training programme endorsed by Dr Mannix, which all our professional carers complete during their induction training before being placed with a client.
This approach has seen us reduce anxiety and emotional upset for individual’s living with terminal or life-limited illness, but also for families who are reassured that the right plan of care is in place, in good time for their loved one.
Importantly for those living with life-threatening illness, we provide nurse-led care which means our professional carers are trained to monitor and identify any changes in your health, responding appropriately and avoiding any unnecessary hospital admissions.
As part of our commitment to delivering high quality end-of-life care at home, we monitor and measure health outcomes to ensure we continually improve the care we provide. When needed, we work with leading nursing companies and other healthcare professionals to ensure any complex medical procedures can be delivered at home.
We know how important it is to effectively manage medications for those receiving end-of-life care. Our professional carers are trained in medications management and use an electronic medications system to ensure all medications are managed proactively and efficiently, to ensure a person is comfortable and pain is minimised.
Sensitive companionship is at the forefront of our end-of-life care – just a listening ear as and when you need it can have very positive effects on well-being. We ensure that a perfectly matched, compassionate carer understands how you wish to receive your care and will be there for you to support your emotional and psychological needs, which we know is so important when receiving end-of-life care.
How to organise end-of-life care
If you get in touch with us, you can speak to a dedicated care advisor who will answer any questions you may have and provide any information you need to make the right decision for you and your family.
We will then arrange a no-obligation home meeting with you and your loved one to discuss their needs and how we match the perfect professional carer for you, so we can then ensure we get the right team and end-of-life care package in place.
We appreciate that it might be that your loved one is in hospital awaiting discharge for the right care package to be put in place. Our care manager is happy to meet you in hospital to talk through what you need and provide an assessment. They will do everything to ensure a smooth transition back home, working closely with other healthcare professionals involved in your care. If you are in a care home and have decided that you wish to receive end-of-life care in your own home, we can facilitate a swift and sensitive move back home.
Funding for end-of-life care
If you choose to receive care in your own home, then you may be eligible for NHS continuing healthcare funding and you can request a fast track assessment of your needs with your healthcare professional, instead of going through the usual screening process and completing a continuing healthcare checklist.
The cost of care for those needing end-of-life care at home will be typically higher as it is a specialist care at home service.
It is worth considering however that live-in care is often cheaper than the total cost of domiciliary care for those needing end-of-life care. When a person is receiving hourly care, provided by a domiciliary care provider it is likely that you will be charged extras for additional services to support the person’s specific end-of-life care needs on top of the cost of a carer visiting. These extras add up and can become costly over time. The total cost to provide hourly care to someone living with high or complex needs can sometimes exceed the price of an inclusive live-in care service.
Care and support for palliative care at home is typically in line with – and sometimes less than – what you would pay for nursing care in a residential setting, with the added benefit of receiving specialist one-to-one tailored care, something that cannot be achieved in a nursing home.