Healthcare management

3.1 Introduction

As populations live longer, it is crucial to also focus on ensuring that a person’s final stage of life is spent with dignity, comfort and peace. This care, traditionally provided through palliative care and hospice services, extends beyond mere medical treatment to a more holistic approach that encompasses a patient’s physical, psychological, social and spiritual needs. Improving “death literacy”—the knowledge and skills needed to help someone die well- for individuals and communities is an important part of healthy humanity.

The definition of the ‘end of life’ stage includes people with advanced, progressive, incurable conditions; those who may die within 12 months; and those with life-threatening acute condition (NICE, 2019)

Current End of Life Experience

With the end of life not being in the realm of most discussions with the medical establishment, many people experience the end of life with a lot of fear around the process. For example, in one survey the top four out of seven fears people admitted to were around death (Age UK, 2013). The top 7 fears are listed below:

1. Dying in pain (83%)
2. Dying alone (67%)
3. Being told they are dying (62%)
4. Dying in hospital (59%)
5. Going bankrupt (41%)
6. Divorce/end of a long-term relationship (39%)
7. Losing their job (38%)

An end of life strategy should aim to tackle each of these fears.

Main Functions for End of Life Care

Regardless of when we or how we die, most of us would like a ‘good death’, which considers the following: (Department of Health UK, 2008).

1. Being treated as an individual, with dignity and respect
2. Being free from pain and other symptoms
3. Being in familiar surroundings
4. Being in the company of close family and/or friends

However, while some people experience excellent end of life care in hospitals, hospices, care homes and in their own homes, many others do not. Research shows that many people experience unnecessary pain and other symptoms, are treated with a lack of dignity and respect, and many people do not die where they would choose to.

Unfortunately it is not common for people nearing the end of their lives to have discussions about dying or planning for death with clinicians, family, or carers.

Wants and Needs of People at the End of Life

There are several common desires and needs expressed by individuals nearing the end of life:

Pain and Symptom Management: Relief from physical discomfort is a top priority, with effective palliative care ensuring pain control and addressing distressing symptoms (NICE, 2013).

Dignity and Respect: People want to be treated as individuals, with their cultural, religious, and personal preferences respected (Department of Health, 2008).

Familiar Surroundings: Many prefer to die at home or in a familiar environment, surrounded by loved ones (Sigurdardottir et al., 2012).

Compassionate Care: Patients value empathetic and supportive medical staff who communicate openly and provide emotional reassurance (National Council for Palliative Care, 2013).

Spiritual and Existential Peace: Addressing spiritual needs and helping individuals find acceptance and peace are essential components of holistic care (WHO, 2020).

Preservation of Identity: Maintaining autonomy and control over decisions, including advance care planning, is important to many (Department of Transport, 2014).