Sarah MangnallUnit 4222-332 Support individuals at the end of life
End of life care doesn’t just involve the individual coming to their end of life; it involves relatives and those who care for the individual but also key members of their care team.
There are many legal requirements, agreed ways of working and policies and procedures that protect the rights of all individuals in end of life care.
The legal requirements from key pieces of legislation cover areas of the following.
Equality, diversity and discrimination and The Equality Act 2010 is relevant to end of life care. It applies to fairness in all decision making and policies.
The Health and Safety at Work Act 1974 highlights the responsibilities for keeping everybody who works within end of life, the individual, families and significant others safe.
The Safeguarding Vulnerable Groups Act 2006 ensures that individuals deemed unsuitable to work with vulnerable adults and children are prevented from doing so.
Equality, diversity and discrimination are important factors during end of life care as they ensure the privacy and dignity of the individual and all those involved are maintained and they are treated respectfully at all times.
Data protection, recording, reporting, confidentiality and the sharing of information is important during all aspects of care in particular end of life.
The Data Protection Act 1998 consists of eight principles that govern how information is recorded, reported and shared. Written and verbal communication must be kept confidential.
The Human Rights Act 1998 sets out everybody’s fundamental rights. As far as end of life care is concerned, rights include the right to privacy and security and the respect for private correspondence.
The Freedom of Information Act 2000 allows individuals the right of access to information held about them.
The Mental Capacity Act 2005 covers rights for those who lack mental capacity. Helping them in will making and decision making processes. It helps them appoint individuals to act on their behalf. This will ensure that after death the individuals will and wishes are executed correctly in relation to all aspects of finances, property and possessions. This Act also covers areas around the decision to stop treatment or be resuscitated. This is called an Advanced Decision to Refuse Treatment. When an individual becomes unable to communicate and make decisions this will ensure their wishes are heard and executed.
The Deprivation of Liberty Safeguards (DOLS) gives additional rights to those provided in The Mental Capacity Act 2005. It gives additional rights to authorities such as hospitals or homes to act on a person’s behalf with regards to their wishes, should that person be unable to make a decision. An example of this would be a resident that was taken to hospital from the home in which I work. She became very poorly in hospital and became end of life. Her Husband wanted her to come back to the home to die but the hospital said that it was in the individuals best interests to stay in hospital as the journey would have been too destressing and that the individual may not make the journey back.
The legal requirements and agreed ways of working doesn’t just apply to end of life and looking after them but also to visitors. This would mainly be family members but it also covers any other third party professionals who have a key role in the care of those at end of life.
The Health and Safety at Work Act 1974 covers and sets out the responsibilities to protect and maintain the health and safety of everybody in the workplace. This not only covers those at their end of life but also their families, significant others, care staff and other visitors who work with those at end of life.
The Safeguarding of Vulnerable Adults prevents anybody deemed unsuitable to work with vulnerable adults doesn’t do so. The Safeguarding Vulnerable Groups Act 2006 helps vulnerable groups be protected from harm or the risk of harm.
Each company or care organisation will have agreed ways of working set out in their policies and procedures. Policies and procedures will fully comply with all legislative requirements. This ensures the rights of those at end of life are protected.
Everybody involved in end of life care experiences and goes through a set of emotional and psychological processes. The individual who is at their end of life, their families, friends and care team will all go through some sort of process emotionally and psychologically.
Kubler-Ross theory 1965 is a five point theory taking the individuals through a process that ends with acceptance. Upon hearing that a person is at end of life a response of shock and disbelief occurs. They can feel totally overwhelmed and alone. These responses are normal and can cause a person to become isolated or isolate themselves and a refusal to accept what is happening (denial).
Within the unit I work the individual at their end of life doesn’t have the capacity to understand what is happening to them. I believe that their own bodies tell them something is wrong but they don’t know what it is or how to communicate it. This I feel makes this process have more of an impact on family members, close friends and significant others. They will be in denial anyway but they will shoulder the denial and isolation that their loved one is unable to understand or express.
Recently I had a family member whose Mother was on Palliative Care and at her end of life. It wasn’t until four days before she died that her Husband realised that his Wife was dying. He was in complete denial. If she swallowed he genuinely believed she could begin to eat and drink again even though she was nil by mouth. He looked lost and alone despite having other family members around him. The Daughter appeared to have her own problems with denial that appeared overshadowed by the extra feelings of denial she was feeling for her Mother and Father. She was exhausted mentally and physically.
Using this particular family and circumstances recently it brings us to Kubler-Ross’s next process of anger. Those involved become angry as they struggle with the denial process. The Daughter in this recent experience showed signs of a lot of anger. She appeared to show anger towards her Father and appeared to blame him for the illness her Mother had. She also appeared to blame the Father for not allowing her to care for her Mother at home. She lived a long away and her Father refused to move nearer to the Daughter when dementia was diagnosed. Prior to coming to Ty Cariad the family had some bad experiences with regard to care given from other care providers and the Daughter appeared to use this anger and aimed it at those caring for her Mother now. It was clear that the Daughter just wanted the best for her Mother and all we could do was support her and listen to her. She became very angry towards previous care given and it was apparent that she also blamed them for her Mother’s recent change in condition.
Bargaining is the next process. This is the ‘what if’s’ or hindsight moments. An individual may think that if they changed their lifestyle it might change their circumstances or prognosis. Within the unit I work bargaining would again be more prevalent with family members. Using the above family as an example the Daughter bargained with herself for example “If I hadn’t sent my Mother to that other place” or “If I’d only done this”. This leads to a feeling of depression and guilt. They feel guilty and blame themselves. They show signs of depression which acerbates the feelings of denial, isolation, anger and bargaining.
The individual who is at end of life will begin to feel sad that they will no longer be able to do what they wanted to do. Dementia patients would have had this feeling nearer the early stages of their diagnosis. They would be more aware of what would be happening to them and become upset that they won’t be able to do things once the condition progresses. Within the unit I work depression for those at their end of life manifests itself differently. As they are unable to verbalise their feelings the depression shows itself in other ways for example, giving up and this shows as a visible thing, not eating or drinking and becoming more tired. The family used in this example showed signs of depression. The Daughter was upset that her children wouldn’t see their Grandma again. Lack of sleep due to not wanting to miss the time left with her Mum. Everything seemed to get on top of her and she became tearful.
Acceptance is the final process. This is where the individual and those close to them realise that they are at end of life. They may acknowledge the realisation but still battle with the other four processes.
End of life is also the start of the bereavement, grief and mourning process. Within Dementia care the bereavement process has already begun. Bereavement is referred to a significant loss. The individual is losing their capacity, memories, thoughts and all they hold dear. This is the same for family members and significant others close to the individual. Families with individuals in later stages of Dementia feel like they have already lost their loved one and they begin to suffer grief. Grief is the set of complex psychological and bodily reactions to bereavement (loss).
Freud, Engel and Parkes have all described the stages and phases of the grieving process. Engel 1962 uses the concept of grief work to refer to the process of mourning through which the bereaved person adjusts to the loss. Engel’s writings have similar characteristics to those of the Kubler-Ross theory.
Disbelief and shock is the initial reaction to the loss or what is going to happen. Refusing to accept the situation is also part of this stage.
Developing awareness is the realisation of what has happened. This also encapsulates the feelings of blame, guilt, anger, depression and apathy.
Resolution is the acceptance stage where the person starts to take a realistic view of the situation.
All grief theorists agree that this is a process that must be worked through. Ramsey and de Groot 1977 wrote about the nine components to grief again showing similarities to the 1965 theory of Kubler-Ross.
Individuals at their end of life and their families, friends and significant others all have different needs and preferences based on personal beliefs, religion and culture which must be respected at all times. These personal beliefs, religion and cultures have a great influence over the end of life care an individual, their families and significant others receive.
There are many different religions around the world and each one has different theories when explaining death. Religion and spirituality can offer a great sense of well-being for those at end of life and those close to them. A person’s religion, belief and cultures may influence their attitudes towards death and it can influence the type of end of life care they receive. It should be an important factor during Advanced Decision making and care planning.
Different religions and cultures across the world all have different beliefs about death and it’s these beliefs that determine how an individual at end of life is cared for both before and after death and the way in which individuals grieve. The Jewish religion for example prohibits embalming and post-mortem examinations as they believe that this is disrespectful to the body.
Key people have very distinctive roles to play in an individual’s end of life care. Key people include family, friends and others such as health care assistants, nurses and other multi-disciplinary people involved with a person’s end of life journey.
Key people are important because they are crucial for the well-being of the individual at end of life. Well-being is established and maintained by providing emotional, physical, social and spiritual support. Key people include the following, essential for meeting an individual’s needs at end of life.
Family members can act as care givers and decision makers. They are also important in providing emotional support. Within the unit I work a recent loss experienced saw one main family member take an active role with care giving along with the health care assistants.
Family members provide necessary knowledge and information into their family dynamics rather than just stand by and be a passive observer. They will ensure their loved one gets the care they want and the respect and dignity at end of life.
Friends don’t have such a direct say on an individual’s care but they also provide emotional support for family members as well as the individual at end of life.
Care staff, Nurses, GP’s, Social Workers, Therapists and other members of the Multi-Disciplinary Team.
These individual’s meet the physical needs of the person at end of life. Carers work with the individual in accordance to their care plan to provide the physical care which includes personal care, comfort and pressure relief. They also provide emotional support to the individual and their families. Carers work with the individual and their families on a daily basis and know and understand needs of each one which are all uniquely different. Carers must remain professional at all times and stay neutral and unattached but in reality carers are in the wrong job if they feel nothing. Everybody will get attached in some way to the individuals they care for and their families. Carers do get emotionally involved but due to the nature of their work they are able to remain professional about it.9.9.1
It is very important to know and fully understand an individual’s wishes after their death. Just because the person has passed doesn’t mean the care stops. Respect and dignity are vital during the end of life process the same needs to be once the person has passed. Knowledge of an individual’s after death care also displays respect for the person’s family, friends and significant others.
Religious beliefs, cultures or rituals can play a significant role in a persons after death care so knowledge is vital, as it can be considered disrespectful to family members, which in turn can cause major conflicts.
Some religions have particular rituals after death. Jehovah’s Witnesses for example are against any type of organ or blood donation. Staff giving end of life and after death care needs to be aware of this as not to create confusion or mistakes when going through the after death legal processes. Other religions and culture prohibit embalming such as Islam and Judaism.
Within the service I work we cannot wash the deceased until formal certification has taken place. After death the GP will be informed who will come and official certify the person as dead. Some families may not wish us to wash their loved one.