Support individuals at the end of life: Healthcare principles

1.1 The main legal requirements and agreed ways of working relating to end of life care are: 1. The Department of Health’s 2008 End of Life Care Strategy that provides a framework aimed at promoting high quality care for all adults approaching the end of life in all care settings. It sets out what adults reaching the end of their lives, and their carers can expect from the services provided toе them. One of the key aims is to ensure as far as possible their needs and preferences for future care are met.

The common factors include: Being treated as an individual

Being without pain and other symptoms
Being in familiar surroundings
Being in the company of close friends and family
2. The National Institute for Clinical Excellence (NICE) sets out the End of Life Care Quality Standard. This quality standard defines clinical best practice within end of life care. It provides specific, concise quality statements, measures and audience descriptors to provide the public, health and social care professionals, commissioners and service providers with definitions of high-quality care.

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This quality standard covers all settings and services in which care is provided by health and social care staff to all adults approaching the end of life. This includes adults who die suddenly or after a very brief illness.

3. The Care Quality Commission that states that people who use services who are at the end of their life will have their care, treatment and support needs met because wherever possible. They are involved in the assessment and planning for their end of life care and are able to make choices and decisions about their preferred options, particularly those relating to pain management.

There are systems in place to ensure further assessments by specialist palliative care services and other specialists where needed. They have information relating to death and dying available to them, their families or those close to them. They are able to have those people who are important to them with them at the end of their life. They have a dignified death, because staff are respectful for their needs for privacy dignity and comfort. The plan of care records their wishes with regards to how their body and possessions are handled after their death and staff respect their values and beliefs.

4. General Medical Council sets out the guidance on End of life care. Patients who are approaching the end of their life must be given the same quality of care as all other patients. They must be treated with dignity, respect and compassion, especially when they are facing difficult situations and decisions about care. Carers must respect their privacy and right to confidentiality. Guidance tells that some groups of patients can experience inequalities in getting access to healthcare services and in the standard of care provided. It is known that some older people, people with disabilities and people from ethnic minorities have received poor standards of care towards the end of life. This can be because of physical, communication and other barriers, and mistaken beliefs or lack of knowledge among those providing services, about the patient’s needs and interests. Equalities, capacity and human rights laws reinforce your ethical duty to treat patients fairly. Some other legislations and agreed ways of working are set out in: community Care Act 1990, Health Act 1995, Dignity Challenge.

1.2 Legislations and guidance relating to caring for individuals in their end of life informs carers that choices and priorities of the individual are at the centre of planning and delivery. Care delivered must be at the highest standards. Care workers should use an effective, straightforward, sensitive and open communication between individuals, families, friends and workers. Communication reflects an understanding of the significance of each individual’s beliefs and needs. Care must be delivered through close multi- disciplinary and interagency working. Individuals, families and friends are well informed about the range of options and resources available to them to be involved with care planning. Carers must make sure that care is delivered in a sensitive, person-centred way, taking account of circumstances, wishes and priorities of the individual, family and friends. Carer must ensure that care and support are available to anyone affected by the end of life and death of an individual. Care workers are supported to develop knowledge, skills and attitudes. Workers take responsibility for, and recognise the importance of, their continuing professional development.

2.1 The Kubler-Ross model known as “five stages of grief” was introduced by Elizabeth Kugler-Ross says that when an individual is faced with impeding death or other extreme situation, he will go through five emotional stages. First one is denial. On being told that one is dying, there is an initial reaction of shock. The patient may appear dazed at first and may then refuse to believe the diagnosis or deny that anything is wrong. Some patients never pass beyond this stage and may go from doctor to doctor until they find one who supports their position. Second one is anger. Patients become frustrated, irritable and angry that they are sick. A common response is,” Why me? ” They may become angry at God, their fate, a friend, or a family member.

The anger may be displaced onto the hospital staff or the doctors who are blamed for the illness. Third one-bargaining. The individual may attempt to negotiate with physicians, friends or even God, that in return for a cure, the person will fulfil one or many promises, such as giving to charity or reaffirm an earlier faith in God. Fourth one-depression. The individual shows clinical signs of depression- withdrawal, psychomotor retardation, sleep disturbances, hopelessness and possibly suicidal ideation. The depression may be a reaction to the effects of the illness on his or her life or it may be in anticipation of the approaching death. Fifth and last one is acceptance. The individual realizes that death is inevitable and accepts the universality of the experience. These five stages are not all encompassing or prescriptive. Not everyone will reach these stages.

2.2 Religion is a prime source of strength and sustenance to many people when they are dealing with death. Different religious theories explain the inevitability and even necessity of death from different perspectives. Spirituality and religiosity have been reported to play significant role in managing death anxiety and enhancing sense of wellbeing, as mentioned by various researchers. Alvarado et al (1995) report that persons with lower death anxiety had greater strength of conviction and greater belief in afterlife

2.3 The people close to a patient can play a significant role in ensuring that the patient receives high-quality care as they near the end of life, in both community and hospital settings. Close relatives and partners, as well as paid and unpaid carers, will be involved in discussing issues with an individual, enabling them to make choices, supporting them to communicate their wishes, or participating directly in their treatment and care. In some cases, they may have been granted legal power by the patient, or the court, to make healthcare decisions when the patient lacks capacity to make their own choices.

2.4 Having a terminal condition means that there is no cure and the individual will gradually get worst and worst. This means a lot of pain. Sometimes it means the individual getting to a stage where he is not able to feed himself, drink, his body might not accept food, he might be incontinent. Support given to terminally ill individual will not relate to the illness itself but to making this person as comfortable as possible, as pain free as possible with all dignity and respect that a healthy individuals has.

3.1 By discussing the care that an individual wishes with carers, doctors or others around more personalised approach to caring will be gained. The individual will feel that he is more empowered and have more responsibility on how his care will be managed towards their end of life. Giving the individual control will also allow carers to know how the individual sees their end of life needs, this will as well reduce the risk of distress of the individual.

3.2 The purpose of advance care planning is to develop a better understanding and recording of priorities, needs and preferences for the individual. This should support planning and provision of care and should enable better planning ahead to best meet these needs. This approach ensures that it is more likely that the right thing happens at the right time. It allows for a detailed recording system that ensures that all advance care planning has the potential to improve end of life care by enabling patients to discuss and document their future health wishes. Advance care planning carried out properly by trained staff improves end of life care by enabling individuals’ wishes to be determined, documented, and respected at end of life.

3.3 Ethical issues near the end of life often arise because of concerns about how much and what kind of care make sense for someone with a limited life expectancy. There is often conflict between physicians or nurses and family members about what constitutes appropriate care. Many of these conflicts can be avoided by clarifying who makes the difficult decisions to limit care and by advance care planning. Understanding the ethical and legal framework in which such decisions are made can also transform what appear to be problematic questions into straightforward answers.

4.1 Death affects people, it affects terminally ill, family, friends and other key people. In our society death became a taboo. People don’t want to talk about it. There are several reasons why people may not want to face the topic of death. When someone is having a difficult time interacting with a dying person it often manifests an avoidance, difficulty in making a conversation, maintaining an eye contact or physical contact. Carers needs to support dying person and key people in overcoming this barrier and maintaining open communication. Dying person should be encouraged to speak about what they need form key people and carers. Some people may wish to avoid an open talk about an illness and will want to focus on memories and loved ones. Some people may not want to talk at all but will need a presence of other key people.

All the carers needs to do is to know the needs of dying person and support them. In order to show empathy and to encourage dying person and key people to talk and explore theirs thoughts and feelings about death carer may use words like “It sounds like you are feeling…” “It sounds like it’s important to you that…” “I know it is hard to you. I want to be here in whatever I can.” “I feel very touched by what you have told me. I’m not sure what to say, but I feel honoured you have shared this with me.” 4.2 Within the process of providing end-of-life care, cultural factors can significantly influence individuals’ reactions to their illnesses and the decisions they make. Culture may impact key aspects such as the following: individuals’ perceptions of health and suffering

individuals’ perceptions of death and dying
individuals’ perceptions of healthcare providers, healthcare, and hospice accepted healthcare practices and remedies
religious and spiritual beliefs, practices, and rituals
communication patterns and common forms of expression
the role of family, relationships, and family involvement
problem-solving, decision-making, and help-seeking behaviours

These aspects can be critically important and challenging to the care worker providing end-of-life care. Care workers must identify the patient’s culture and determine to what degree their cultural beliefs may impact their reactions and decisions and the process of helping. For example, patients may believe that suffering and death are natural in the journey of life. They may strongly believe in prayer and honour certain patron saints by lighting candles throughout the home. They may shy away from any discussion and formal acceptance of advance directives.

4.3 An individual may not be able to control the progress of their illness but he has the right to make decisions about their treatment options, lifestyle changes, and care givers. They still have the right to respect and dignity while seeking medical care. The individual has the right to an informed consent with a sufficient information provided about illness, treatment and support provided. An individual has the right to make decisions that are best for them regarding the management of their care.

4.4 Individuals wellbeing can be enhanced by: Environmental factors. There are many reasons why an individual’s wellbeing may be enhanced by environmental factors. Some individuals may wish to stay in a hospice. This can be due to not having a close family, a need to 24h care, feeling more secure in a hospital environment or concerns about being a burgeon to a partner. The environment should be light with reduced noise levels, hygiene facilities or dining facilities must be accordingly maintained. This can improve eating behaviours. Calm environment can reduce stress and improve outcomes thou other mechanisms eg. social interactions that can provide opportunities for positive escape and a sense of control with respect to stressful clinical environment. Non-medical intervention. In the last days of their life individuals needs a good care in order to be able to die with dignity. Non-medical interventions that can help with that will be hygiene, caring for oral hygiene, wetting dry mouth, comfortable bed, curtains or screen to make sure privacy etc.

Use of equipment and aids. The individual’s wellbeing can be increased with use of correct equipment. This is because with the right equipment they will be able to be cared for in the chosen setting eg. home, their independence will increase and those caring for the individual will have support. An example could be a syringe driver. This piece of equipment will allow the individual to self-medicate and will provide comfort by relieving pain. Alternative therapies. They can treat and they offer comfort that a traditional treatment may not be able to provide. Some of those therapies could be acupressure, acupuncture, aromatherapy, reflexology etc. These therapies are meant to ease symptoms and/or side effects of treatment. They are used in conjunction with traditional medicines to support the body’s natural abilities to heal and to increase wellbeing.

4.5 Partnership working means working with a team not just in the team. Carers needs to work with other members of multidisciplinary team in order to ensure that the individual feels secure and confident about the care he receives. Working together as a team and communicating effectively will give reassurance that any information will be passed on and will be available to all team members. This will ensure the individuals wellbeing.

5.1 Discussions and decisions should be carefully documented so that the carers can comply with the individual's wishes. This is most important in the final days of the individuals’ life. As long as the individual is able to participate in their care, all efforts must be made to address these issues. Any documentation is vital to protect both the individual’s rights, as well as the carers. All parties involved with the individuals care should be made aware of the individuals ‘and family's wishes.

5.2 The majority of people wish to know a full truth about their condition. Furthermore in most cases individuals who are told about their condition in clear manner may have better adjustments to their situation. Providing direct, clear information in a compassionate manner will reduce anxiety of the individual also trust can be enhanced. Person giving significant information must be competent, must be a good communicator, must show concern and must be able to comfort the individual receiving significant news. The individual may wish to ask questions about future medical care and it is important that the person giving the news has the knowledge to answer these questions as fully as possible.

5.3 Ethical issues involves may include reflection on morality. Ethical principles are not laws, but they are guiding principles about what is good and what is bad. They should direct carers and other health care professionals in their work and decision making. Ethical dilemmas arise when there is a perceived conflicting duty to the individual, such as a conflict between a duty to preserve life and a duty to act in an individuals’ best interests. Ethical issues near the end of life may also arise because of concerns about how much and what kind of care make sense for someone with a limited life expectancy. Conflict between physicians and family members may arise.

5.4 First step must be determining if the problem relates to a legal, moral or ethical issue. There could be a list made of the critical issues involved in the dilemma. In the list there may be included the parties who will be affected by the decision, also list can include all their rights as well as the dangers that could be posed to them. Conflicts should therefore be dealt by competent people.

6.1 People approaching the end of life may benefit from specialist services and support organisations. Support organisations are made by people who understand what the terminally ill individual is going through. They can provide emotional, practical and financial advice and point in the direction of the further help that may be needed. Specialist’s services like palliative care has specially trained staff that will deliver service sensitively and effectively. Care teams are carefully selected and matched to each Individual to ensure they feel comfortable, safe and confident with their care team. Specialist training is also provided which includes pain control, intensive care dignity, cultural awareness, dealing with death and notification of death.

6.2 The aim of advocacy is to bring about the beneficial outcomes in the way that enables individual to retain as much control as possible over their end of life care. In relation to end of life care the advocate is able to ensure that those administering care to the individual do so in the line with individuals’ needs and preferences.

6.3 Carers should encourage individuals in decision making process and make sure their voice is heard. Carers may need to act as an advocate for individuals who eg. are cognitively impaired or unable or unwilling to speak for themselves. Carers’ expertise, compassion and advocacy can make the individuals’ and family’s experience a lot more comfortable.

6.4 Spirituality can mean different things to people, it can be easily misunderstood or related to religion. Carers must remember that every individual has spiritual needs not only those who are religious. Spirituality lies in line with body and mind- physical and psychological needs. Finding comfort, completion and peace may sustain hope and meaning to the individual.

6.5 Some sources of support to address spiritual needs may be books like Bible, Koran, spiritual books; classical music, concerts; chapels; tv shows; support groups etc.

7.1 Other members of the team like palliative care should be contacted when care provider has limited experience of the condition; there is a doubt about the range of options, benefits or risks of a particular option or when a difference in opinion arises within the care team, family.

7.2 At the end of life care is provided by multidisciplinary and multi-agency teams. These include GP’s, hospitals, pharmacies, ambulance services, support services. Carers must understand their role and responsibilities within the team as well as must understand key responsibilities of other team members. Effective communication is the key aspect needed in order to liaise with other team members and to provide support needed by terminally ill individuals.

8.1 The role of care worker at the end of life is to provide comfort, adequate care and good assessment and management of symptoms, to encourage problem-solving within families and to empower people within society to enhance wellbeing. At the end of life it is important to help people use what time they have left to achieve what they can, both for themselves and their families. By working with families through this difficult time, care workers can help bring stability within the family.