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.
The Department of Health produced an End of Life Care Strategy in 2008 which was designed to build a framework in which all care organisations provide and promote high quality care for all adults approaching their end of life. It clearly highlights what care they are expected and to the standard the carers should take in delivering it. The key aims of this strategy are being treated as an individual, ensuring as much as possible that the individuals needs and preferences with regards to their future care is met but also to be without pain and additional symptoms, be in familiar surroundings and being in the company of close family and friends.
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.
Agreed ways of working are linked to legislative requirements which have an impact and relevance to my job role. There may be times when family members wish to discuss end of life care of their loved one. Legislation guides what I have to do with regard to my job role such as being respectful to other people’s views and beliefs.
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 at all times.
Nurses again care for the individual and offer emotional support to the person at end of life and their relatives. They are there to offer a more clinical explanation to relatives when they ask specific question with regards to their loved ones condition. Nurses also work with other members of a multidisciplinary team to create a care plan for the person at their end of life. They work with the families of those involved to ensure a fully person centred care plan is created. Nurses also administer medication prescribed by the GP or hospital consultants in accordance to the individual’s diagnosis, care plan and MAR charts. Nurses also monitor and observe the individuals condition, report and respond to changes. Within the unit I work the GP is contacted with regards to pain relief and we have access to a Palliative Care Team who come in and access the individual and act on GP instruction. This could mean that they arrange for drips or syringe drivers to be fitting to help control any pain the individual is in. Each individual at end of life will have different multidisciplinary teams involved in their care who work together to ensure that all frameworks are followed for example The Six Steps Programme.
Not all individuals and their families are religious or have particular spiritual beliefs. Priests, Chaplains, Rabbis can all offer spiritual support, even for those who aren’t religious. It can often be the case that sometimes a different person to talk to can be of great support and comfort. The unit I work allows visits from all denominations and it’s the families that usually request these visits.
End of life isn’t just about the process of dying and how we care for those at that stage in life. There are lots of other support that may be required. Once the shock of the diagnosis has subsided other thoughts can begin to cause unnecessary stress and anxiety. There may be a feeling of the need to ‘tie up loose ends’ and this soon becomes the forefront of everything, not just for the person going into their end of life care but also for their significant others. Financial concerns may begin, for example how to pay the bills once employment stops or how to pay for the funeral. Financial arrangements should be discussed beforehand but as a society we don’t as we think we have all have plenty of time. It’s often classed as a morbid thought, depressing or living life simply takes over. This can cause great anxiety once the realisation set in.
Some people have unresolved issues or family problems that need to be resolved. The individual may require a lot of support from others to help address any issues. In situations like this it’s hard to know what to do and how the other affected party may react to a resolution. This can cause worry and lots of anxiety. Support will be needed throughout the process as resolution may not be sought which can be even more upsetting and may destabilise the person further.
There are some people who have a ‘Bucket List’. These are things that an individual wants to do before they die (Kick the Bucket) for example sky diving, visiting a particular country or experience a once in a lifetime thing. Support may be required to help fulfil these wishes.
There are many benefits to an individual having as much control over their end of life care. This is because each person is an individual and all have different beliefs, wishes and wants that need to be respected.
Once an individual has a diagnosis they are able to obtain as much information about choices available to them. Those with Dementia its more than possible with early diagnosis the person can and will be able to make choices about their end of life and after death care. It is also possible with Dementia a lot of people deny anything is wrong with them especially in early stages. This can make the topic of end of life and after death care a completely taboo subject. It’s important that in that instance family members support the individual and obtain as much help, support and information as they can. Often there are some decisions that are extremely difficult to make for example, DNACPR (Do Not Attempt CPR). This can be extremely distressing for family members. The realisation in the area I work in is that CPR is often far too stressful on an elderly person’s body and the chances of success are slim. The process is distressing for all involved.
Benefits to having control over their own end of life care is just that “control”. An individual remains responsible for decisions involving them. Hag control empowers the individual and can help with coping strategies with what’s going to happen to them. This empowerment can help those close to the individual as they know that the person is at peace, content and acceptant with their diagnosis and decisions they have made. Having control can make the whole process appear less scary and more focused for everybody.
Having control also maintains the individual’s dignity and respect. They are content that the decisions they have made or have been helped to make are the right ones for them and they will be carried out as per their wishes, this increases self-worth and self-determination within the individual. Control over decisions regarding end of life care can be a source of comfort to all those involved. The UK Government defines a ‘good death’ as
Being treated with dignity and respect
Being free from pain or other symptoms
Being in familiar surroundings
Being in the company of those we love and are close to, such as family and friends
The UK Governments End of Life Strategy coupled with The Six Steps Programme as mentioned earlier helps an individual make more of an informed choice to have as much control over their end of life care.
The purpose of advanced care planning in relation to end of life care is important because it helps the individual obtain as much information about their rights in order to make positive and beneficial decisions about their end of life care. This will enable the individual to have as much control as they can before their illness/condition takes hold. At this point it would make the individual unable to express their wishes or preferences. Advanced care planning allows the individuals preferences with regard to treatment.
It’s very important during end of life care that all significant conversations are recorded. The reasons for this are it shows that the care being giving is within the wishes of the individual and shows that the care being given is in accordance to the individuals care plan.
Written documentation and accounts of important conversations also protects the rights of the individual at their end of life. It also protects the care provider or organisation and their staff. Recording of conversations reduces the chances of any ambiguity or conflicts that could come about after the individual has passed or even whilst the individual is still alive. A family member could question aspects of care given or any decisions that were made. If good recording and documentation has been done conflict can be avoided.
An example I can give is from the family I have used previously and throughout this unit. Decisions were being made daily about care given, in particular comfort and pressure relief. The Daughter felt that 2 hourly repositioning wasn’t adequate and wanted half hour or hourly. It was explained to her that 2 hourly was adequate and standard enough as we had to think of her Mother’s wishes as well. She was in pain and moving her constantly would increase pain and distress and not give her Mother a comfortable, dignified or respectful death, free from pain. These conversations were all recorded and it stopped the possibility of conflict after her death.
There are factors that can influence who should give significant news to the individual at their end of life or other key people involved.
Most people would expect an open and honest approach when being given this type of news. It is important that the individual and other key members are given the news in a clear and understandable way. Emotion can be a factor especially if a family member insists on giving the news. The family member would potentially be in shock themselves at that time and have an array of thoughts and emotions. That emotion can get in the way when explaining to their loved one what is going on and what is likely to happen. This can lead to confusion and even denial in some instances. The best communicator can crumble in these circumstances and important information can get missed. This in turn can affect decisions and choices to be made with regard to the individual’s end of life care.
Individuals will have many questions when the news is delivered so competency is another factor. Anxiety levels in the individual can be raised if the person giving them the news isn’t competent or knowledgeable, to answer a question with “I don’t know” isn’t good enough and can lead to stress, anxiety and uncertainty.
There are conflicts, legal and ethical issues that can arise in relation to death end of life and after death care.
In order to fully understand how conflicts can arise it’s important to understand what ethics and morals are. Ethics and morals are both extremely similar and often get confused in terms of the way the words are used. Ethics are moral principles that govern a person’s behaviour or conducting of an activity. Morals are about how an individual, society or group views what’s good or bad, right or wrong. People’s morals can be different dependant on cultures, religions or beliefs. Ethical principles are not laws but they do reflect on morality, so what’s right or wrong. Ethical principles are generalised as they won’t always match some people’s morals. Laws in the UK with regards to morals are based on ethical principles. Conflicts can occur when a person’s morals contradicts ethics. The perfect example of this is the recent and currently ongoing case of Alfie Evans. This is a complex case and due to confidentiality information is limited from a medical point of view. The information being given is from Alfie’s parents which of course will be based on their morals and ethics rather than those of medical professionals. This information is fuelled with a lot of emotion which is causing a media frenzy and creating a really emotive them and us scenario. There is a lot of conflict between the parents and medical professionals.
Alfie Evans was born a normal healthy baby in May 2016 but by December 2016 he was a very ill baby. He had experienced seizures which admitted him into hospital and after fighting some infections causing more seizures Alfie ended up in a coma on life support. Legal battles started in 2017 after doctors said it was in Alfie’s best interests if life support was ended as Alfie had an undiagnosed degenerative brain condition. Doctors were finding it difficult to diagnose Alfie as he was extremely ill and it was unclear what the future would hold for him. Scans and test confirmed that there was significant brain damage and that parts of his brain had been completely wiped out. The doctors said that there is little chance of recovery and that there are no treatments or tests that can be done to give a definitive diagnosis or to make him well again. This would be news any parent dreads to hear especially when there is no diagnosis. It’s natural that the parents will cling onto all hope and even look into other methods of treatment sometimes in different countries. In Alfie’s case a hospital in Rome have said they want to treat Alfie. These experts have no new treatment options or anything different to what is happening in the UK. Ethical principles adopted in foreign countries can be a lot different to our own and this in itself can cause conflict. Ethics go as far as the life of a child should be prolonged for as longs as possible and that parents are always right in the decision making for treatments. This isn’t the case in this country; the ethical framework is very different. In this country medical treatment is extremely useful and parent’s views are taken into consideration and are regarded as important. Sometimes medical help isn’t enough and decisions need to be made. Parents react on emotion, grief and sadness and try everything they can to hold onto their child and request treatments that won’t help the situation. In Alfie’s case doctors and the courts have agreed that treatment cannot be provided despite the parents wanting it.
There are lots of other conflicts that have come about regarding Alfie’s case, conflict over palliative care being mistaken for euthanasia, murder accusations, police presence at the hospital and the family losing their parental responsibility for Alfie. There are many individual morals from everybody involved that are conflicting with ethical principles. In the case of Alfie Evans I believe there won’t be resolution and that the conflict will continue as it’s a very volatile and sensitive case.
Within the unit I work conflicts can arise between the nurses or care staff and family members. Family members believe that they know what is needed throughout the care of their loved one, as in Alfie’s case emotion, grief and sadness play a big part in decisions and thought processes. This emotive response can sometimes cause unreasonable and unnecessary decisions to be made, rather than those in the person’s best interests. Family members can often be in denial and refuse to believe professionals with regards to care given at the end of life. As explained in 5.5.1 the Daughter of one of our residents disagreed with two hourly repositioning and wanted her Mother repositioned more often. This was an emotive reaction to the situation plus the Daughter was in denial.
Dealing with such conflicts is difficult and in some cases not resolved. It’s not a case of just telling a family member that certain things can’t be done. They feel as their opinions and wishes are correct and valid and should not be dismissed. Conflict needs to be dealt with by firstly looking at whether there are any legal, ethical or moral principles involved against both sides of the conflict. Conflict situations aren’t easy or in some cases quick like in the Alfie Evan’s case. Conflict no matter how much is put in place first to prevent it can and does happen and in order for resolution it’s important that issues are addressed and it may even be the case that some conflicts are never resolved and continue after the person has passed.
All discussions and meetings with family members and key individuals need to be fully documented from the onset. If this is done right from the start proper and advanced care planning can be put in place. This could reduce the chances of conflict occurring at a later stage. It’s important that conversations are carried out by competent and qualified individuals as to avoid any incorrect information being given or not enough information given. This can help avoid misunderstandings and ambiguity along the way. Making sure competent people give information is important as is ensuring all of the care team have the same information this can avoid contradictive information being given which in turn can give a feeling of false hope and conflicts can arise. Family members cling onto any positive pieces of information and if somebody has given incorrect or conflicting information this can set back care being given as well as advanced care planning. All verbal and written conversations and care planning must be consistent and be clear on care given, any treatment and how the team will work together in regard to a work setting’s agreed ways of working practices.
Negotiation strategies are useful as it enables things to be viewed from different perspectives and allows those opinions to be expressed. Negotiation is something that happens every day within healthcare. Negotiation is when two people or groups of people have different opinions about something and they have discussions to try to find a common ground or solution, family members who want the best for their loved one and healthcare professionals who want the best for their patient. Family members will have opinions and perspectives based on a more emotional level than that of the healthcare professionals. They work on providing what’s in the individuals best interests but doesn’t mean they don’t care they aren’t emotionally driven. That example alone is cause for conflict and something that healthcare professionals face every day, emotion over reality. Negotiating strategies can help as it can often bring more than one resolution to a conflict. Communication is vital in negotiating as it’s not what you say it’s how you say it.
Sometimes it may be necessary to move away from the condition the individual has as it can make healthcare professionals and family members conflict one another through emotion and best interests. The outcome of an end of life diagnosis is that the person will eventually pass and nothing can be done to stop that. It might be more beneficial to focus on treatment options that can improve the individuals well being physically and emotionally at this current time. This can always be addressed again throughout because the individual’s condition will change and there needs to be a clear line between well-being at the current time and possibly prolonging their life unnecessarily.
If any conflicts arise it might be beneficial to obtain information and help from other sources, organisations or professionals. They may be able to offer other solutions that may resolve the conflict. It may also be beneficial that these people meet up with families in conflict as it may help see things from a different perspective. It can also help by putting families in conflict in touch with specialist services as they can often help people understand end of life and terminal conditions better and again it may help see things from a different perspective.
Conflict is something that cannot be eradicated completely and it’s something that doesn’t happen all the time but it does and its how it’s dealt with as to whether a successful outcome is achieved.
There are a number of specialist services available for those at their end of life which can be extremely useful and beneficial. Support organisations and support services are extremely important as they play a vital role in providing the best quality of care for the individual as well as support for families. Examples of specialist services and support organisations include nursing/care homes, hospices, palliative care teams, domiciliary services, respite and day services and even funeral directors.
Nursing/care homes provide quality care in accordance to an individual’s care plan. The staffs within these services also support the individual emotionally as well as offering support to family and friends. The unit I work has access to specialist palliative care services. These services are usually based within hospitals or hospices but there are community based teams that visit individuals and their families in their own homes as well those in nursing homes. The services required from this team within the unit I work usually happens when a resident becomes more close to their end of life. Their services are also used if a resident suddenly becomes ill and their end of life is approaching quickly. They will assist and advise on care in addition to the current care plan and help with any necessary changes. They also offer advice and organise stronger pain relief options such as syringe drivers. Specialist palliative care services not only provide information and advice they also offer emotional support to the individual and other key people such as family.
There are some individuals that feel they don’t want or need nursing care within a home setting and with help they wish remain in their own homes for as long as possible. Domiciliary care services can help provide personal care, housework, shopping and accessing the community. These type of domiciliary carers will have much experience with providing end of life care and can be of great support and comfort to individuals and their families.
End of life care can be very emotional for all involved so respite services can be really useful, examples of this are Marie Curie Nurses. They offer their services day and night allowing individuals or family members a break. This allows them to keep some sort of normality in their lives even if it’s only for a short time.
Funeral directors are a service that not only deals with the individuals body after death but they can also deal with the individual and their family before death. There has been a lot of emphasis on the cost of funerals in the media lately and funeral directors offer a lot of pre-paid services. This enables all funeral plans to be made beforehand and all the costs covered before death. This can be a great comfort to the individual as they will know everything is taken care of and paid for so they won’t be worried about their funeral before they have even passed away. Funeral directors are extremely professional, dignified and respectful and they can even offer a source of comfort to all involved.
There are certain times that an advocate may be beneficial and as mentioned earlier in this unit conflict would be one of those situations. An advocate is independent so they will be completely neutral to the situation but will have the best interests of the individual in the forefront. An advocate will support the individual in making decisions with regard to their end of life care and in some instances communicate these wishes to others.
Individuals at end of life may find it difficult discussing their wishes with their loved ones through fear upsetting them and causing more worry and anxiety. An advocate can help and be present during these discussions making the process more manageable which can be comforting for the individual at end of life. An individual at their end of life just may need somebody more neutral to discuss their concerns and anxieties. It’s sometimes easier to speak to somebody who isn’t close personally or emotionally unlike a family member.
Conflicts can occur between family members and those at their end of life often emotionally fuelled and in denial. Sometimes family members deny what is happening and won’t accept it so discussions regarding end of life are none existent or cause major arguments. An advocate can help to be there during these difficult discussions and make the whole thing less stressful. An individual may also require the services of an advocate when meeting members of their care team to make sure the voice of the individual is heard and that their choices and decisions are listened to regarding their end of life care. Advocates represent the individual and even speak on their behalf to ensure their rights are supported and heard.
Spiritual support isn’t just obtained from religious organisations such as Priests or Chaplains. Spiritual support also comes from the services of counsellors. When an individual hears they are entering into end of life they will become filled with a lot of different feelings and emotions. Some individuals look for meanings of life and have self-worth issues. As we become older we naturally become more aware of our mortality. Life changing events can also have this affect as we become more conscious and aware of our mortality for example my Husband had a life changing accident in the early 1990’s that could have killed him. As a result of this accident it made him more aware of his mortality and not putting himself in unnecessary dangers that can risk that mortality, in my Husbands case he fears heights and won’t go on fairground rides as they question is mortality.
An individual may access spiritual support if they have any unfinished business or conflict in their lives. This often means that they need to resolve these conflicts in order to gain inner peace enabling them to go through the end of life process comfortable and at peace. Spiritual support can be extremely comforting for the individual at their end of life as well as their families. Family members will be comforted and happy that their loved one is at peace and is acceptant of the fact they are at end of life. Spiritual support offers friendship and companionship to the individual.
Spiritual support as mentioned above isn’t just about religion and the term spiritual can often be very misunderstood. It’s extremely important that the spiritual needs of the individual are met as this provides good quality, solid end of life care. Spirituality involves the mind, body and their physical and psychological needs. It’s important that carers are aware and support the spiritual needs of those in their care. Learning the spiritual needs of those we look after can come from family members as they are the ones closest to the person and know them the best. Not everybody’s spiritual needs are the same and each individual needs to be respected therefore carers must show empathy and support the spiritual needs of those they look after. Should a carer be unable to do this they need to seek ways in which they can offer support to the individual? Managers and other staff members can be a support especially if they have more experience is in meeting the spiritual needs of individuals. Carers shouldn’t be embarrassed if they have difficulties when offering spiritual support, we all have our own limitations and find it difficult to manage our own spiritual needs this is why getting support from others is vital. Family, managers, more informed colleagues, counsellors and even religious organisations can help.
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 person 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.
It is very important to support key individuals such as family members immediately after an individual’s death. Whether the illness has been a long one or whether it’s been a short process it’s still a shock and no matter how prepared we are its still unbelievable and upsetting. It’s important that empathy is shown and in the case of the unit I work we console and offer affecting to family members should they require it. They may want time alone with their loved one and perhaps want help informing other family members or friends. It’s important that time alone is respected and that the family don’t feel under pressure or rushed. In the unit I work the families are left if they wish with the door closed to spend time with their deceased loved one. Space is also provided away from their relative if they so wish as not everybody can deal with death the same way and feel they can’t sit in a room with their deceased loved one. Key people are told that staff are available if and when they need them to discuss any concerns, thoughts and feelings they may have and privacy is given to them should they wish to talk. It’s important to be a good empathic listener it shows you care and you genuinely feel for them. An example within the unit I work was a gentleman passed away very suddenly and his family were extremely shocked about what had happened. They weren’t expecting it so they had no idea on what to do next or where to turn to. Staff needed to support the family with the shock and also guide them as to what to do next. If felt strange as it didn’t seem right discussing funeral directors and registering the death so soon after but the family needed it as they really were lost. Another example of supporting key people after death is on my household we had a family who were all so different. All were upset but one wanted to go, the other wanted to talk and the other just wanted sit with their Mum. As a team we assisted the family members a place was provided for them to go and be alone and also to talk. No preparing of the body can happen until the doctor has been to certify the death which can be difficult for some family members. It’s important that they are listened to and supported through this. The unit I work in continues to support key people after death even when their loved one has been moved to a funeral home. They will come to collect belongings and clothes which can be a distressing time. We often know when they are coming and can arrange with the family their wishes. Some families want to do it all themselves and be left alone to do it, some require help and some just ask us to clear the room, tell us what they want and what to donate or discard. It’s all an individual thing and there is no right or wrong way to behave in situations like this. Support continues further as we attend the funerals of residents we have lost. This shows that we care and gives the family additional support should they need it.