What Does End of Life Care Involve?

Posted: 12/01/2018

In the professions of medicine, nursing and all other allied health professions, “end of life care” (or EoLC) is a term which refers to health care concerned with patients who are not only in their final hours, days or weeks of life, but also patients who are terminally ill or who have a terminal condition which has become progressive, incurable and advanced.

End of life care should aid you in living as well as possible until the day that you pass away, and it aims to help everyone to die with dignity. The professionals providing the care should always ask you about what your wishes and preferences may be during the time you are being looked after by them. Support will not only be provided to you but also your family, carers and other people who are important to you.

At any point, you have the ultimate right to express your wishes about where you want to receive care and where it is that you would prefer to die. You can receive end of life care in a care home, your own home, a hospice or a hospital.

End of Life Care in the United Kingdom

As identified by the UK Department of Health, end of life care is an area where the quality of care has been previously “very variable” and care that has not been a high profile in social care or in the NHS. To address this the national end of life care programme has been established in the year 2004. It aims to identify and propagate best practice.

In 2006, around half a million people in England have died, with about 99% of them being adults over the age of 18 and close to two-thirds of them were over the age of 75. As set out in a report, about three-quarters of those deaths were categorised as “predictable”, meaning that the death followed a chronic illness such as heart disease, a stroke, cancer or dementia.

The report also stated that 58% of people died in an NHS hospital, 18% in their own home, 17% in a residential care home and only about 4% of people died in hospices. Despite these statistics, it was found that the majority of people claimed that they would prefer to die at home or in a hospice – only 5% said they would prefer to die in a hospital. The end of life program aims to correct this and considers this a crisis. To correct this, there is a need to reduce the needs of dying patients to have to physically go into hospital and stay there for the remainder of their life. A study of recent years has suggested that an estimated 40% of people who had died in the hospital did not require medical attention that could only be provided in hospitals.

Who provides end of life care?

End of life care may be provided by health and social care professionals in a number of relevant ways, all dependant on your individual needs. People who are doctors, nurses, your GP, hospice staff and counsellors may all be involved in most cases. So might social care staff, chaplains, physiotherapists, occupational therapists or complementary therapists in less common cases.

If you have chosen to be cared for at home or in a care home, it will be your GP that has the overall responsibility for your care. At home, community nurses will usually be the ones to visit you, as well as friends and family of course.

When does end of life care start?

It can begin when you feel as though you need it, this may be in the last few days, or months or even years of your life. Some people like to make it their way of life long before it is expected they will die, but everyone is different and may not want to receive it before their last few hours.

It is generally the case that people are reaching the end of life when they are likely to die within the next 12 months, despite an actual date of death being impossible to predict. According to the NHS, 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”

Decisions to be made

Involved in end of life are a number of decisions that have to be made regarding the patient, including questions surround palliative care, the patients’ right to self-determination in terms of treatment and life, medical experimentation (whether it will take place or not) and medical interventions and the ethics and efficacy which go along with that.

End of life care also involves working out the correct allocation of resources and spacing within hospitals and national medical systems– this is commonly known a ‘rationing’.

All decisions alike are informed by technical and medical considerations, economic factors and bioethics. Additionally, end of life treatments are subject to the considerations involved with the autonomy of the patient, since it is ultimately still up to an individual and their family to determine when to seek treatment or withdraw any kind of life support.

Care for patients in the final days and hours of their life

It is often the case that families struggle to make timely decisions in the face of imminent death which respects the individual’s values and wishes. This may result in things like unnecessary over-treatment, under-treatment and a variety of other problems. It is common for families to dispute over whether the quality of life or the extension of life is the goal of the treatment.

Find Me Help is a directory of services based on where you live which are for people in their last few years of life, as well as their loved ones.

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