Unit 1: Understanding end of life care

About this unit

This unit provides learners with an overview of the emotive issues surrounding death and dying. It also helps learners to understand palliative care and its place within end of life care, along with the support services available to the individual and others.

Learning outcome 1

The learner will: Understand different attitudes to death and dying. The

learner can:

1.1 Outline the factors that can affect an individual’s views on death and dying, to include the following perspectives:

Social

Cultural

Religious

Spiritual

1.1 Factors that can affect an individual’s views on death and dying Social

Whether we feel socially included, excluded or live in social isolation, will influence our attitudes and opinions. Experiences such as bereavement, divorce, loneliness, bullying and discrimination will affect the way we interact with others and our ability to understand and empathi se.

All of the factors discussed will help to make us the people we are. This will include any obstacles we encounter, or privileges we experience. There is little doubt that deprivation and poverty disadvantages countless people, whilst privilege and wealth greatly benefit others. However, being brought up in an affluent area with great financial privilege may not guarantee a positive life experience, in the same way that deprivation and poverty may not necessarily lead to a negative life experience. People do succeed – or fail, despite their background.

Therefore values, beliefs and environment could have influenced the lives of the adults you support. Getting to know people and their history often gives guidance as to why they behave the way they do or think the way they think. The adults you support may have family members who are involved in their care and their lives. Again, events and circumstances in their lives will have affected their current situation, and both positive and negative experiences and their consequences can touch all members of a family.

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Culture A ‘death denying’ society

There is a belief that our modern society is ‘death denying’. Death is becoming invisible, a taboo subject, which nobody discusses or even likes to think about. A number of reasons may explain this, including:

The changes in family structures

Living arrangements may mean that there is a fracturing of the extended family.

People can live a long distance from older members of the family and have limited contact with the process of ageing, dying and death, therefore encountering the process only at the very end of life or even after death, for example, the funeral.

Three generations of the same family tend not to live under the same roof as they once did. In previous generations children may experience the death of a grandparent living in the same house and be exposed to the person dying at home. This is far more unusual now.

Improved health care, disease prevention, the improvement of living conditions and immunisation programmes have dramatically increased life expectancy in the last 50 years. People rarely encounter death at a young age. Many years ago, it was not unusual for children to die in infancy or from epidemics of infectious diseases, such as polio, diphtheria and measles or for mothers to die in childbirth. Medical care and knowledge were far more limited.

Many,now treatable, diseases and conditions were incurable (e.g. diabetes, serious infections, congenital conditions) and most people have experienced death and dying within their family, friends and community by the time they reached adulthood. Nowadays people may encounter their first experience of death and dying when they are older adults – may be in their forties or fifties and even then may have no direct contact.

In our society there is a tendency to ‘professionalise’ death. There used to be great community involvement in death and dying. People died at home and were ‘laid out’ at home in order for people to view the body and pay their last respects. This is done far less often now with nurses, care workers and undertakers performing the care tasks and rituals associated with caring for the deceased. The community and the extended family would provide support for the bereaved.

In hospitals and care homes there may be a tendency to secrecy or hiding things when someone is close to death. A dying person may be transferred to a single room or staff may be reluctant to admit that someone has died or discuss death itself in order not to upset other elderly residents in a care home or patients in a hospital.

It may be easy to understand the reasons why society is death denying. Unfortunately death becomes ‘hidden’ and treated as a subject not to be discussed or even acknowledged.

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Religious, cultural, and personal beliefs

Different cultures and religious groups hold different beliefs about life and death. These may be evident before and at the time of death. It is important that these beliefs, faiths and practices are always respected.

Within each faith there may be many different schools of thought. For example, within Buddhism there are several different schools to the teaching of their religion. Within Christianity there are several different churches, for example, Catholic, Church of England, Pentecostal and Anglican.

It must be remembered that faith is an individual matter. Showing respect for beliefs is about recognising individual preferences. Having knowledge of the beliefs and needs of different religious groups can help you to meet the needs of individuals as they approach death and after they have died.

Spiritual factors

Spirituality can be described as anything that gives a person purpose and meaning to life, such as family, friends, hobbies and interests. A person may gain comfort and support from that which is spiritually significant to them or, alternatively, may find the prospect of losing this unbearable. These factors will influence the individual’s views on death and dying.

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Learning outcome 2

The learner will: Understand the aims of end of life care. The

learner can:

2.1 Clarify the aims of end of life care

2.2 Differentiate between a ‘good death’ and a ‘bad death’ 2.3 Outline the World Health Organisation’s definition of palliative care

2.4 Explain how palliative care is part of end of life care

2.1 The aims of end of life care

End of life care aims to:

Support individuals not only with their physical needs but also pain and other distressing symptoms

Support the individual’s psychological, emotional and social and spiritual needs

Care and support relatives, friends and health care staff, both during the person’s illness and after their death, in the form of bereavement care

Improve and enhance the quality of life of individuals with a life limiting illness

2.2 The differences between a ‘good death’ and a ‘bad death’ A good

death

This, at first, must seem a strange statement. How can death be good? It is important that you understand this concept as it is at the centre of the palliative care approach. A good death can be looked upon as when a person is able to die where they wish and with whom they wish.

Wherever possible, individuals should be able to choose where they want to die. Support should be provided in order to facilitate this.

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A bad death

Unfortunately where there are good deaths there are also bad deaths. A person may experience a bad death where the following occur:

Lack of compassion and sensitivity on the part of staff

Decisions made without consulting the person and their family by health care staff

Persistent or unmanaged pain

Unrelieved discomfort

Fear and loneliness

Staff unwilling to listen to needs and concerns

Spiritual wishes disrespected or ignored

Making decisions without involving and consulting the individual; making the assumption that the staff know better what the individual needs.

Withholding information from the individual and their family and friends. The staff deliberately colluding.

Inadequate or non-existent information

There may be many reasons for this, although there can never be any excuses or justifications for a bad death. It is always unacceptable.

2.3 The nine point World Health Organisation’s definition of palliative care

In 2004 The World Health Organisation defined palliative care as: ‘An approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.’

The World Health Organisation defined palliative care by the following nine points. Palliative

care:

Provides relief from pain and other distressing symptoms

Affirms life and regards dying as a normal process – an open and positive approach, taking away taboos.

Intends to neither hasten nor postpone death – allows life and death to take a natural course within legal and ethical guidelines.

Integrates psychological and spiritual aspects of care

Offers a support system to help patients live as actively as possible until death – focus is on living life to the full as far as possible.

Offers a support system to help the family cope during the patient’s illness and in bereavement – if the family are supported they will be better able to support the patient.

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Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated.

Will enhance quality of life, and may positively influence the course of illness

Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiotherapy. Early intervention will ensure that the patient and their family have access to a full range of care treatment and support.

This defines clearly all aspects of palliative care. You may have noticed that the nine points show that palliative care spans not only a range of aspects but also may begin early in the individual’s illness, so may take place over a long period of time.

The reasons why palliative care is needed Unmet

needs and unrelieved suffering

There are many reasons why palliative care is needed. The most pressing of these is unrelieved suffering and unmet needs, as in this country evidence show that many thousands of people do not receive good palliative care.

Unmet needs may include:

Physical symptoms such as nausea and vomiting not being controlled

Pain that is not treated adequately

Lack of recognition and support for psychological, emotional and spiritual needs

Isolation, loneliness, fear, frustrations, anxiety and depression are not acknowledged/recognised and support not being forthcoming

Changes in population and the pattern of disease

Throughout history and up until the second half of the 20th century the cause of the majority of deaths was very different from today. Death tended to come unexpectedly and quickly from infectious diseases and accidents. Many now treatable diseases such as Type 1 diabetes were untreatable and fatal.

Today, as medical science advances, people live longer and do not die from what are now preventable and treatable diseases due to the discovery of antibiotics and immunisation. The pattern of disease has changed, and as life expectancy increases and our population ages many individuals have long term deteriorating conditions. These individuals may require care and symptom relief for varying periods of time.

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Ethical and moral reasons

The term ethics can be defined as the practice of moral reasoning for solving problems that arise in medical practice. Ethical principles concerning care are:

Autonomy This is a respect for the individual and their ability to make decisions in respect of their own health and future. You can help people to be autonomous by helping them to make decisions for themselves.

Beneficence Describes the actions you take which are intended to benefit the person. You practice beneficence when you help people.

Non-maleficence Describes the actions you take which are intended not to harm or bring harm to the person.

The World Health Organisation (2004) states ‘All people have a right to receive high quality care during serious illness and to a dignified death, free of overwhelming pain and in line with their spiritual and religious needs.’

2.4 How palliative care is part of end of life care

Dictionary definition – Palliative/Palliate – Relieve without curing; Excuse (alleviate, cover, hide symptoms).

Palliative care refers to the care given to a person with an advanced, life limiting illness, for which there is no cure.

The term ‘palliative care’ may be thought of by many as ‘care of the dying’ or ‘terminal care’, therefore, describing the care given to individuals before the end of their life. Whilst this is accurate it does not describe fully the vast range and scope of palliative care.

Many care workers do not fully understand what palliative care means and who is intended to benefit. They may believe that palliative care is only for people at the very end stage of their life or that it is only for people with cancer. This is inaccurate. The principles of palliative care can be put into practice from the point when a person is diagnosed with a life limiting illness. In many cases, this period may span a number of years.

The pain and symptoms a person may experience can be controlled and the emotional, psychological, spiritual, cultural and social needs of the individual and their loved ones can be met.

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Learning outcome 3

The learner will: Understand current approaches to end of life care. The

learner can:

3.1 Explain the stages in the end of life care pathway 3.2 Identify the current approaches to end of life care

3.3 Evaluate how an approach to end of life care can support the individual and others

3.1 The stages in the end of life care pathway

Definition:

“Care pathways map out a process that specifies key events, tests, interventions and assessments occurring in a timely fashion to produce the best prescribed outcomes, using the resources and activities available for an appropriate episode of care (Wilson 2007)”. The end of life care pathway consists of six stages or steps developed to assist and guide health care professionals providing health and social care to people nearing the end of their life. The pathway aims to ensure high quality, person-centred care, which is well planned, coordinated and monitored, whilst being responsive to the individual’s needs and wishes (NHS End of Life Care Programme).

Stage/Step 1

Discussions as end of life approaches

Health care workers need to agree when discussions with individuals and their relatives should take place, who initiates these and the competencies and skills required of staff to undertake this role.

Stage/Step 2

Assessment and care planning

The early assessment of individual’s wishes and needs is vital. Establishing needs and wishes including physical, psychological, cultural, spiritual and environmental and identifying any unmet needs are essential.

Stage/Step 3 Coordination of

care

In order to ensure needs and preferences are met once a care plan has been agreed, services need to be coordinated.

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Stage/Step 4 Service

delivery

Care should be of the same high standard across all services, individuals and their families’ access.

Stage/Step 5 Last days of

life

It is vital care staff recognise a person has entered the dying phase so that the care needed is delivered. The manner in which a person dies will live in the memory of their relatives, friends and care staff involved.

Stage/Step 6 Care after

death

All staff should follow good practice when someone dies.

Care after death includes:

Honouring spiritual or cultural wishes of the deceased person and their family, and ensuring legal obligations are met.

Preparing the body for transfer to the mortuary or funeral directors (Last Offices)

Offering family/carers the opportunity to participate in the process and supporting them if they wish to do so

Ensuring privacy and dignity

Ensuring health and safety

Adhering to people’s wishes with regard to organ/tissue donation

Returning personal possessions

In addition, support for carers and the individual should be provided throughout. They and the individual should be able to access reliable information and the spiritual, cultural and religious needs met. Practical support should be given to ensure day-to-day needs are met.

All care professionals involved in end of life care should be aware of, and have access to, ‘The Route to Success Resources Guide to Implementation of End of Life Care Pathways’.

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3.2 The current approaches to end of life care

The palliative care tools and the end of life care programme

The end of life programme is an umbrella term used to describe the following tools to achieving effective end of life care.

Gold Standards

Framework

Preferred Place of

Care

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The Liverpool Care Pathway

This project was developed by The Royal Liverpool University Hospitals by the Liverpool Marie Curie Centre and the Specialist Palliative Care Team.

The goal is for a clear pathway for health professionals to follow during the last days or hours of a person’s life. The care pathway can be usually agreed in advance by all concerned, professionals, carers and significant others in a person’s life. The Pathway guides care professionals and carers in a range of aspects. This Pathway should be used in all care settings where end of life care is given.

The Pathway guides care professionals in a range of aspects:

Comfort measures and symptoms control

Anticipatory prescribing of medicines and the discontinuation of inappropriate interventions

Emotional and spiritual support

Communication with the dying person and their family

Communication with the Primary Health Team

The Gold Standards Framework

The focus of the GSF programme is to improve care for the dying in the community by optimising the local primary care team’s provision, so that more patients are enabled to live and die where they choose, and un-needed hospital admissions are avoided. Other services and factors are also involved in admission avoidance, and GSF can help in clarifying and measuring these, to better commission local services.

It is aimed at COMMUNITY care for patients living at home and in care homes – all areas supported by primary care teams.

It aims to ENABLE GENERALISTS (GPs, DNs/community nurses, care home and other staff), so that they can best work with specialists and hospice staff.

It includes patients in the FINAL YEAR of life – year, months, weeks of life as well as those in the final days.

GSF is applicable to patients with ANY ADVANCED ILLNESS (heart failure, COPD, neurological disorders, renal failure, etc.)

Once the structure of GSF is in place, it can act as a springboard for other local developments in community palliative care to further improve outcomes for patients and cost effectiveness for health commissioners.

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Objectives

There are many objectives of the Gold Standards Framework which include:

Better assessment and control of symptoms

Better tailored or ‘customised’ care to enable people to die in their preferred place of care

Better advanced care planning

Improved carer support and information

Improved staff communication, confidence and team working

Core standards

The Gold Standards Framework has developed seven core standards described as the Seven Cs:

1. Communication

2. Coordination

3. Control of symptoms

4. Continuity out of hours There has long been recognition that care can break down and result in distress and emergency admissions when out of hour’s continuity is broken. There may also be gaps in care if many agencies are involved with the person’s care and staff members and team change with resulting communication difficulties.

Therefore the Gold Standards Framework states that all staff must attend meetings. A ‘Home Pack’ is given to the person and their family. This supplies them with advice about what to do in an emergency and contact details.

5. Continued learning

Social care workers have a responsibility to ensure they meet the standards in their work, and contribute to protection of individuals they support by employing safe effective practice. In relation to your own training and development, the code states that social care workers must:

“Be accountable for the quality of their work and take responsibility for maintaining and improving their knowledge and skills”.

This means that someone can judge your practice for competency and you have the responsibility to keep your skills and knowledge up to date and ensure your work is of the appropriate standard.

You have a responsibility to keep your practice up to date and access education. However, this does not exclude your manager from their legal responsibilities.

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The Care Standards Act (2000) as amended by the Health & Social Care Act (2008) requires all managers to ensure that training is provided to care workers, covering a number of aspects of care practice intended to develop work related skills and practice.

Reflective practice is the process of reflecting/thinking about certain aspects of your practice, in order to improve and develop your skills and knowledge. You may consider:

What works well?

What could be better?

What could you do differently?

How you will do things next time?

Throughout your career in palliative care, as with your everyday life, you will encounter unfamiliar circumstances and situations. How you deal with these will affect you and influence how you feel about approaching a similar situation in the future.

You will need to develop analytical and evaluative skills in order to review your work, identify areas that can be improved and action plan your personal and professional development as an on-going process.

6. Carer support

It is vital that those caring for people with an advanced illness receive both practical and psychological support, including bereavement care. They are often under great stress and if inadequately supported their well-being and the well-being of the person they care for may be adversely affected, resulting in crisis.

7. Care in the dying phase

The Gold Standards Frameworks states that appropriate care is given to people in the final days and hours of their life. Only essential medication is continued to enable the person to be pain free and comfortable. Their psychological, emotional, cultural and spiritual needs should also be met. The use of the Liverpool Care Pathway is recommended.

Approaches/tools under development

There are a number of approaches/tools under development, which, although some are validated at local level they are not validated nationally. These include:

Skills for Health Workforce Functional Analysis Tool

Whole Systems Partnership Cohort Model for End of Life Care

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3.3 Evaluating an approach to end of life care and how this can support the individual and others

Evaluation

Following the assessment, planning and implementation of nursing/caring interventions, we need a way of showing that these actions we have carried out have benefited the client in some way. And so, we have the fourth phase of the care planning process – Evaluation. This phase allows us to measure whether (or not) the care we have provided was effective and also provides the basis for on-going assessment and planning, as the client’s needs and circumstances change. As was mentioned in Module 1, although evaluation appears to be the final step of the care planning process, it is not, because the process is never ending and is a continuous cycle.

According to Roper et al (1996):

“The objective of evaluating is to find out whether or not (or to what extent) the goals which were set have been (or are being) achieved”. Learning outcome 3.2 has discussed current approaches to end of life care. It is vital that whichever approach is chosen that this is evaluated to assess its effectiveness.

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Learning outcome 4

The learner will:

Know the range of support services available to individuals and their families. The

learner can:

4.1 Explore the range of services and facilities available to an individual and their family

4.2 Identify the key people who may be involved within a multi-disciplinary end of life care team

4.3 Identify the potential barriers an individual may face when accessing end of life care to

meet their needs 4.4 Suggest ways to minimise the barriers identified in 4.3

4.1 The range of services available to an individual and their family

Accessing palliative care services

Hospices developed palliative care, and are credited with having significantly improved people’s end of life experiences.

Health care professionals have seen the need to adopt the hospice model in other care settings, such as hospitals, care homes and the individual’s home.

Individuals may access palliative care services through referral from hospitals and primary care services.

Hospice care

Palliative care was developed in modern hospices. However, many people have a very negative view of what kind of places they are and hold the belief that you go there to die. Most hospices offer a variety of services for individuals throughout their illness. Services can be provided residentially, in the home and through day care. People may require a different service at different times during their illness. The aim of hospice care is to help the individual to maintain their quality of life with any support they may require.

The services of a hospice

Hospices provide palliative care. They are usually charitable foundations independent of the National Health Service. Respite care and symptom control

A person may be admitted to a hospice for control of symptoms, such as pain and nausea. Alternatively they may require admission to enable the person and their family/carers to have a respite (rest period). During this respite period services received may be reviewed and evaluated and any necessary changes made.

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Terminal care

Hospices provide care for people as an inpatient in the last weeks, days or hours of their lives.

Home care

Palliative care may be provided by a hospice within a person’s own home. Day care

Many hospices offer day care services. This is where a person can attend a specialist day care unit that offers a change of scenery, a supportive environment and a variety of therapies. Day care units may offer a range of services including:

Activities/Occupational therapies

Complementary therapies

Medical and nursing services

Counselling services

Personal care

Hospices are friendly, positive places that provide a haven for those who use their services. They focus on maintaining and improving, where possible, the quality of a person’s life.

They offer both practical and emotional support for individuals and their families until the end of that person’s life. Hospices usually provide bereavement support and counselling where this is needed. They also provide education and support for staff.

Hospices provide nursing and medical care and most have doctors who specialise in pain and symptom control and who help, advise and support other care professionals, including hospice staff in the community.

Care at home

Palliative home care services may be provided by community nurses, Macmillan or Marie Curie nurses, and supported by social services or other agencies, including domiciliary care agencies.

Care homes

It must be remembered that a care home is a person’s home and they may wish to die there. A nursing home should be able to provide palliative care but temporary hospital or hospice admission may be necessary. However, people living in homes that do not provide nursing care services may need to transfer to a hospital or hospice setting.

It is essential that this decision is made, where possible, with the individual themselves and their loved ones. It is essential that their wishes are taken into consideration.

If an individual needs to be transferred to another care setting there are several things that need to be planned. The first and most important thing to take into account is whether the

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individual is well enough to travel. If the person were so ill that death could be imminent, it would be cruel to arrange for transfer if the chances are that the individual will die on transfer or shortly after arrival at the destination. This could be very distressing for relatives and for the individual concerned.

The second consideration when transferring an individual is to ensure that they are comfortable and any pain is well controlled prior to transfer.

It is essential that all documentation is completed prior to transfer and should include an in-depth account of the individual’s diagnosis, medical history, current medication, any allergies, any special requests and care and treatment to date.

It is considered good practice for a member of the care staff to accompany the individual on transfer. They should have a good knowledge of the individual as they will be required to verbally hand over the individual to the care staff within the new setting.

Hospitals

The majority of hospitals no longer have long stay beds, so transfer to a care home offering nursing care, or a hospice may be necessary. This should only be done when the person’s condition is stable and their symptoms relieved. If the person is nearing the end of their life and too ill to move the hospital should provide care for the remainder of their life, or until their condition improves enough for them to be discharged.

There are palliative care units in some hospitals whilst others have designated numbers of palliative care beds.

Cancer services

Radiotherapy services – are usually carried out at a specialist cancer centre after referral by a consultant.

Chemotherapy services – can be provided by oncology services at a local hospital or in a specialist cancer centre following referral by consultant.

Oncology – specialises in the field of tumours – mainly cancers. A consultant oncologist, specially trained doctors and nursing staff will provide specialist services to oncology patients in a hospital or hospice either as an inpatient or outpatient. There is a considerable amount of study and research with regard to oncology.

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4.2 The multi-disciplinary end of life care team

When supporting individuals and key people through the process of dying, it is important to remember you are not alone. You work as part of a team; therefore it is vital that you are aware of the roles of other members of the health care team and the ways that they can contribute to the care of individuals who are dying.

Many people, both within and outside your care organisation, will contribute to the care of the dying in a variety of ways. The most obvious responsibility of the team in which you work is the responsibility to deliver the highest standard of holistic care to the individual, with each team member providing their own aspect of care. There will be responsibilities that are specific to each role and other responsibilities to the work team and its members. It is important that you understand what the role of each member of the care team is and when referral is required.

Within your care environment there should be members of staff with experience and training in looking after people who are dying, and can advise other members of staff in the support of these individuals. In nursing homes, there should be nursing staff with appropriate skills in palliative care. All care staff should receive some training in looking after people who are dying and be aware of their physical, spiritual and emotional needs to facilitate a holistic approach to care.

It is imperative that care staff should also only act within their level of competence and should know when and how to call upon other members of the team for support.

It is important that in order to deliver coordinated continuity of care, all members of the care team demonstrate a consistent approach to the delivery of that care. The responsibility that the entire team share is the responsibility that facilitates the team to function successfully. Cooperation when liaising with other members of the team is vital. Good effective teamwork will benefit all involved, especially the person and their family.

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Specialist palliative care team

These may be provided and funded by the health service or charities. They support and advise the person, their family and the primary care team. The palliative care team will also provide services within hospices, day centres, hospitals and people’s homes. Marie Curie nurses – are home nurses funded by Marie Curie.

They provide 24 hour care at home for people with cancer. They offer support and advice as well as nursing care and specialise in pain relief and symptom control.

Macmillan nurses- are nurses trained in palliative care. They offer advice and support in relation to pain relief and symptom control. These nurses can give emotional support and are trained counsellors; however they do not usually carry out practical nursing activities. They also support and advise the primary care team.

General Practitioner – This will probably be the first care professional the individual contacts and will be responsible for referral to the appropriate service and health care professional.

Hospital consultant – will conduct investigations, arrive at a diagnosis and either provide treatment or refer to a specialist.

Oncologist – Specialises in the treatment of cancer

Cardiologist – Specialises in heart disease

Geriatrician – Specialises in the care and treatment of older people

Psycho-geriatrician – A specialist in mental health issues relating to older people

Haematologist – Diagnoses and treats disorders of the blood

Urologist – Specialises in the diagnosis and treatment of urinary tract disease

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Community nurse – Provides care and support in the person’s home and care homes who do not provide nursing care.

Marie Curie nurse – Provides 24 hour care for people with cancer in their own home

Breast Care nurse – Provides help and support for people with breast cancer

Stoma nurse – Specialises in the care of people with stomas

Respiratory nurse – Provides care for people with respiratory disease

Physiotherapist – Can help with the mobility of the individual, provides symptom relieving treatments, aids and equipment and relieve respiratory conditions.

Occupational therapist – Provides purposeful occupation for the individual. They assess the activities of daily living and decide what the person needs to successfully achieve these. Speech therapist – Specialises in assessing and treating speech, language and swallowing problems.

Dietician – Will advise on the dietary requirements of the individual and will provide support. Psychologist - Will assess the physiological needs of the person and advise on care and treatment.

Counsellor – Provides talking therapies to enable people to discuss their feelings and adopt a problem solving approach.

Other health care staff may include: Health

care assistant

Activities coordinator Occupational therapy assistant

These health care staff provide essential care and support for the individual and are a vital part of the health care team.

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4.3 The potential barriers individuals may face when accessing end of life care

Even though there is agreement that there is a need for palliative care many people’s needs are not met and the standards of palliative care fall below that which is considered acceptable.

There is never any excuse for this but the many barriers preventing good palliative care may explain the reasons.

These may include:

Lack of understanding and training regarding the principles of palliative care and the services that are available. Many care workers feel they do not have adequate training and knowledge to communicate with and support people who are dying.

Negative attitudes towards end of life care – some care professionals see their role as curing, ‘making people better’, and may see a life threatening illness as incurable and they can do nothing. They may overlook vital aspects of care such as pain and symptom relief. This results in the needs of the individual not being met.

Palliative and hospice care has developed primarily within the field of cancer care. Knowledge and understanding of palliative care for non-cancer illnesses and care outside hospices is limited. Care professionals do not fully understand how to apply the palliative care approach to other life limiting illnesses. This is particularly so in the care of the elderly who have several progressive conditions and tend not to receive the level of palliative care they require.

Lack of understanding regarding cultural and spiritual issues in relation to the dying and the dead can have a detrimental effect on the care the person receives. It is difficult to meet the needs of an individual if you do not know what these needs are. This may also result in unnecessary and unrelieved suffering adding to people’s distress, creating barriers to communication and break down of the therapeutic relationship.

Late referral – referring someone to palliative care services too late in their illness may result in them not having the full benefit of any treatment provided.

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The factors among dying people and their families that create barriers that prevent them from fully benefiting from palliative care services

The person themselves, or their family may create barriers including:

The person or their loved ones believe the prognosis is better than they have been advised. This may lead to them feeling they do not require some aspects of care offered to them, particularly emotional support.

The person or their loved ones have unrealistic expectations of the response to treatment. This can result in frustration, sadness, anger and emotional distress as they may feel care professionals are not doing their job properly.

They may decline treatments that may improve their quality of life

The person does not want to be seen as a burden to others so they may deny symptoms such as pain and not make their needs and wishes known.

The person is unwilling or unable to discuss their needs or level of care. There may be a number of reasons for this including lack of acceptance or fear. The result may be that a comprehensive identification of needs and a plan of care cannot be fully formulated.

There are family disagreements regarding the treatment options. A conflict of interest may occur when the person’s, their loved ones, the care organisation or any other persons involved in the individual’s care are unable to agree on a course of action.

Refusal by a competent person to allow information to be disclosed to family or friends should be respected. However, if the relatives are to assist in caring for the person, it could be justified that it is in the best interest of the person to disclose confidential information. This said, confidentiality should not be breached unless it is felt by care professionals that there is no alternative. Always be advised and guided by your manager.

Loved ones may state that they do not want the person to be told about the prognosis. This is usually an attempt to protect the individual. However, this can put a huge strain on the relationship and it may also prevent the individual from making informed choices and preparing for their death.

The person and their loved ones may hold a belief system that prevents them from discussing certain issues or accepting particular treatment options.

The person may have language difficulties or differences or may not have full understanding.

The person and their family may be reluctant to ask for help, especially financial, to access services.

The person may present themselves to services very late in the disease process and may be unable to fully benefit from palliative care.

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4.4 Ways to minimise barriers Lack of understanding and training

It is vital that all care organisations provide training and education with regard to end of life care, and that this is accessible to all regardless of their role or position. It is often the case that support workers and other untrained staff spend a considerable amount of one-to-one time with those who are dying, but are the least likely to be offered training.

Negative attitudes toward end of life care

All care staff should recognise that they have a duty of care to meet the needs of all individuals they care for including those who are not going to get better.

Recognition of the importance of high quality end of life care and the rewards to individuals, their families and the staff who care for them is essential.

Lack of understanding of how to apply end of life care to non-cancer illnesses

It is often not recognised that palliative care is not just for those who are dying of cancer. High quality end of life care should be applied in all care settings for individuals who have life limiting illnesses. Again, education, training and most importantly, resources are needed to overcome this barrier.

Cultural and spiritual issues

It is extremely important that all care workers are well informed with regard to the issues, beliefs and rituals associated with culture, spirituality and religion and that they are aware of an individual’s needs, wishes and preferences.

Late referral

Health care professionals should understand the significance of referring an individual as early as possible in order that they will benefit fully from palliative care services.

Overcoming barriers created by factors amongst dying people and their families

It can be very difficult to change attitudes, address fears and encourage people to fully access and benefit from services when they, themselves, present barriers.

An open, honest approach, clear explanations, information, education and support at every step of the process is vital in ensuring that barriers are minimised and if possible removed. The importance of developing therapeutic and supportive relationships with the individual and those significant to them cannot be over emphasised.