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In 2021, there were 585,412 deaths registered in England and Wales, and despite the COVID pandemic, the greater majority of deaths followed a period of chronic illness such as heart disease, cancer, stroke, chronic respiratory disease, neurological disease or dementia, with each of these people needing care at the end of their life. However, the quality of end-of-life care can be variable depending on location, social and cultural background, and diagnosis, and many people are unable to access support at this crucial time.
The National Audit of Care at the End of Life found that there has been an increase in advance care plans, but the latest audit still shows that 9 out of 10 people did not have one on arrival at their final hospital admission. Around half of the people in their final hospital admission lacked the capacity to make decisions about their care and may have benefited from having an advanced care plan.
The National Institute for Health and Care Excellence (NICE) quality standard on end-of-life care for adults says that “people approaching the end of life should receive consistent care that is coordinated effectively across all relevant settings and services at any time of day or night. This should be delivered by practitioners who are aware of the person’s current medical condition, care plan and preferences”.
However, a survey by the Motor Neurone Disease (MND) Association in 2019, observed that only 36% of people with MND were given the chance to make an advance care plan and less than half had the opportunity to discuss end-of-life issues. And the Care Quality Commission (CQC) report, “A different ending: people with a learning disability”, found that unidentified health needs among people with a learning disability can result in late recognition that they are at the end of their life, meaning fewer opportunities to plan their care.
The National Survey of Bereaved People (VOICES) collects information on bereaved people’s views on the quality of care provided to a friend or relative in the last 3 months of life, for England.
Data from their last report found that:
- 7 out of 10 people (69%) rated hospital care as outstanding, excellent or good which is significantly lower compared with care homes (82%), hospice care (79%) or care at home (79%).
- Overall quality of care for females was rated significantly higher than males with 44% of respondents rating the care as outstanding or excellent compared with 39% for males.
- Ratings of fair or poor quality of care are significantly higher for those living in the most deprived areas (29%) compared with the least deprived areas (22%).
- Ratings of the overall quality of care across all services in the last 3 months of life were reported by most respondents (95%, 20,173 responses). Services included care provided by hospitals, care homes, hospices and care while at home from GPs and care services such as Macmillan. Of all responders, 3 out of 4 (75%) rated care as outstanding, excellent or good, while 1 in 10 (10%) rated care as poor.
What is end-of-life care?
Clinically, the term end-of-life care usually refers to the last year of life, although for some people with a terminal condition, this may be significantly shorter. It is intended to enable people to live as well as possible until they die, and when the time comes, to die with dignity.
Good end-of-life care is intended to not only benefit the individual who receives it, but also the people who care for them, and those who are bereaved. However, recognising when someone is likely to die can be challenging for clinicians to predict, and can add to the challenges for individuals and families in making decisions about care at the end of life.
People are considered to be approaching the end of life when they are likely to die from their condition within the next 12 months, although this is not always possible to predict.
This includes people whose death is imminent, as well as people who:
- Have an advanced incurable illness, such as cancer, dementia or motor neurone disease.
- Are generally frail and have co-existing conditions that mean they are expected to die within 12 months.
- Have existing conditions if they are at risk of dying from a sudden crisis in their condition.
- Have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke.
It is important that people are involved in decisions about their care in the last days of their life, if that is what they want, and that their wishes are respected. Their doctor or another member of the care team should talk to the person who is dying about the care and support they would like and, if the person agrees, involve their family members or other people important to them in these discussions.
Sometimes these decisions are already included in an “advance statement”, which has details about the care a person would like at the end of their life and what is important to them. Others may have made these wishes clear when assigning a “power of attorney”.
Who provides end-of-life care?
Many healthcare professionals can be involved in providing end-of-life care, depending on the local area provision, but also by what support the person needs. Hospital doctors and nurses, GPs, community nurses, and hospice and care home staff might all be involved, as well as social services, religious ministers, physiotherapists and complementary therapists.
End-of-life care can be provided by:
- The NHS in hospitals, specialist clinics, in the person’s own home, or in a care or nursing home.
- Hospices – Provide care at different stages of a person’s illness, not just at the end of life, and provide care at the hospice, at home and in the community.
- Other voluntary organisations – Such as condition-specific charities. They may also provide nursing such as Marie Curie or Macmillan nursing services, and support to people and their families at the end of life.
A palliative care team should try to organise for the patient to be cared for at the end of life according to their wishes, whenever possible.
Funding and commissioning end-of-life care is complex. There is variation across the country in the balance of general versus specialist services, and between NHS and voluntary sector provision. With the enactment of the Health and Care Bill, the commissioning of end-of-life care in England transfers from clinical commissioning groups to integrated care systems. Most hospices are independent charities and receive their funding through a combination of NHS funding and charitable donations.
What is palliative care?
Palliative care is for anyone living with chronic diseases, or life-limiting illnesses. It is about the quality of life and focuses on pain and symptom control. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.
In many cases, palliative care begins relatively soon after diagnosis of the chronic or life-limiting condition or during treatment, and people can live for years while receiving palliative care. Unfortunately, some people mistakenly believe that palliative care is only for people reaching the end of life, so do not access it early in their illness. The World Health Organization (WHO) estimates that globally, only about 14% of people who need palliative care are receiving it.
Palliative care teams focus on quality of life, and they treat people suffering from the symptoms and stress of serious illnesses such as, but not limited to:
- Congestive heart failure (CHF).
- Chronic obstructive pulmonary disease (COPD).
- Kidney disease.
- Amyotrophic Lateral Sclerosis (ALS).
The goal of palliative care is to relieve suffering and provide the best possible quality of life for patients and their families.
Who provides palliative care?
Palliative care focuses on holistic or “whole person” care, so it doesn’t only attend to the physical symptoms of the condition that the person is experiencing; support is provided holistically, by a variety of health and social care professionals.
These professionals are sometimes referred to as an interdisciplinary team. The professionals providing care should reflect and support the individual person’s wishes. What is most important is to plan and provide the kind of support they want.
An interdisciplinary palliative care team may include:
- Doctors – Usually the GP will be central to providing palliative care, working with other specialist doctors and therapists to keep the person comfortable and helping them to get the most out of life.
- Nurses – Providing ongoing treatment, which can be provided in a healthcare setting such as a clinic or hospital or at a hospice, or at the person’s home via district and community nurses.
- Social workers – Helping to source practical help at home, and guide the patient and/or family towards key services such as family and financial support.
- Carers – These may be live-in or visiting. Professional carers can make daily life easier, providing personal care such as washing and dressing, and they can also provide companionship.
- A psychologist or counsellor – These are trained professionals who will listen and offer guidance on any fears or worries that the patient or their family may be experiencing. They can also provide ongoing support to a bereaved family.
- Charity and support groups – Organisations such as Macmillan, Dementia UK, Alzheimer’s Society and Marie Curie, to name but a few, can help direct patients and families to additional specialist support from people who understand or have experienced the particular condition.
- Religious groups – Anyone who may have particular religious beliefs can access support to help them attend religious or spiritual services or receive visits from a faith leader to help them to practise their faith at home.
Is palliative care the same as end-of-life care?
While palliative care includes end-of-life care, the key difference is that it can be used at any point along the treatment process. End-of-life care occurs during the last stages of palliative care. Having palliative care doesn’t necessarily mean that the patient is likely to die soon, as some people will have palliative care for years. End-of-life care offers treatment and support for people who are near the end of their life, usually at some time during their last year.
End-of-life care and palliative care are tailored to the wishes of the individual. When the end of life is identified the focus of the care usually changes from the treatment of the condition to making the patient as comfortable as possible in order to make the most of the time they have left, to help the dying person live as well as possible until their last moments and for them to be able to die with dignity.
Who can have end-of-life care?
The UK Government has announced that providing end-of-life care will, for the first time, be an explicit legal requirement for health commissioners throughout England through an amendment to the Health and Care Bill. At present, some people approaching the end of life may be eligible to receive NHS continuing healthcare.
This means that the NHS will fund a person’s care, including social care, such as care home fees or care at home. Someone may be eligible for fast-tracked continuing healthcare if they have a “rapidly deteriorating condition” or are “entering the terminal phase”. The criteria for this mean people with some conditions, such as cancer, are prioritised.
In some areas, individuals can access personal health budgets for people at the end of life, which gives the individual greater choice and control over the care they receive and who provides it. Part of the purpose of personal health budgets in end-of-life care is to reduce variation and to ensure people receive high-quality, person-centred care, in line with national policy ambitions.
Where will end-of-life care be based?
As mentioned above, end-of-life care can be based:
- In a hospital or specialist clinic.
- In a hospice.
- In a care setting.
- In a nursing home.
- In the individual’s home.
Discussions as the end of life approaches should include agreeing a care plan which takes into account the individual’s preferences of where they want end-of-life care to take place. However, end-of-life care services have been disrupted during the COVID pandemic, and services have adapted significantly in response.
As a consequence, there has been a significant shift in the proportion of people receiving their end-of-life care and dying at home, with a third more people dying at home than pre-pandemic.
Wherever the person is cared for, the most important thing is that they receive the end-of-life support needed so that they spend their final days in the most peaceful and dignified way.
When does end-of-life care begin?
End-of-life care may last a few days, months or a year. It begins once an individual has a need for it, and will then continue for as long as it is required. There isn’t a single specific point in an illness when end-of-life care begins, as it very much depends on the individual person and the advance of their illness.
For many conditions, the doctor is likely to be able to provide information on the various stages in the diagnosis. These stages can provide general guidelines for understanding the progression of the condition and help with planning appropriate care for each stage.
For other life-limiting conditions where there are no specific known stages, end-of-life care may start to be considered when the person:
- Has been admitted to the hospital several times within the last year with the same or worsening symptoms.
- Has made multiple visits to A & E and although their condition may have been stabilised, the illness continues to progress significantly, affecting their quality of life.
- Has decided to stop receiving treatments for their disease.
Healthcare professionals are trained to recognise the signs and symptoms that begin to occur when someone is nearing their life’s end, and should be advising the patient and family of any changes in health circumstances that will lead to evoking end-of-life care.
The end-of-life decision-making and planning processes are made considerably easier when conversations regarding placement, treatment and end-of-life wishes are held as early as possible with the patient, because the stress and grief resulting from a loved one’s deterioration can often create conflict between family members.
For anyone needing to discuss end-of-life care, there are a number of sources available for advice and support including:
- Age UK, 0800 169 6565 ageuk.org.uk.
- Compassion in Dying, 0800 999 2434 www.compassionindying.org.uk.
- Cruse Bereavement, 0844 477 9400 www.cruse.org.uk.
- Living Well Dying Well, 01273 479 114 www.lwdwtraining.uk.
- Marie Curie, 0800 090 2309 www.mariecurie.org.uk.
- Organ Donation, 0300 123 23 23 www.organdonation.nhs.uk.
- Macmillan, 0808 808 00 00 macmillan.org.uk.
- The British Lung Foundation has a specialist helpline for people with COPD 0300 222 5800.
- Alzheimer’s Society 0333 150 3456.
- Dementia UK 0800 888 6678.