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End of Life Care – Discussions as the End of Life Approaches
This article is the third in a series about end of life care. The first article in the series is “End of life care - an introduction”, which set out the framework to be expanded in the series.
In this article we noted that there were a number of sources of information regarding end of life care. These include the NHS National End of Life Care Programme, the National Gold Standard Framework, and the Social Care Institute for Excellence (SCIE) resource “Dementia Gateway”. The second article is entitled “End of life care – elements of care”, and considers the four elements of care which should be present throughout the six steps of the Programme.
As a reminder, the NHS National End of Life Care Programme lists six steps in the end of life care pathway:
- Discussions as the end of life approaches
- Assessment and care planning
- Coordination of care
- Service delivery
- Last days of life
- Care after death
The Programme also lists four elements of care which should be present throughout the six steps listed above:
- Support for carers
- Information for patients and carers
- Spiritual care
- Social care
Discussions as the end of life approaches
Understandably, communications around end of life care appears to be the area which causes most stress for providers of care. However the cared for are often relatively relaxed about discussion of such issues and may even gain comfort from knowing that their personal feelings have been examined and will be taken into account. The lack of prior discussion and forward planning can lead to difficulties should a person being cared for suddenly become unable to control their care environment, or communicate their wishes. In some instances the wishes of the carers take over, almost always with the best interests of the cared for in mind, but how can the carers know those wishes if they have not been discussed, at length prior to that situation? The same applies to family direction of care; they will again almost in all cases act in what they see as the best interests of the cared for, but they are in little better situation than professionals to know the real and actual wishes.
The answer to the potential problems is effective communication at the earliest possible stage, and the key factors in promoting that are training and systematisation. A practical and sensitive approach, with specific objectives in mind, can allow the interaction required for effective communication to take place positively.
Research has suggested that a planned approach to advance care planning s can be effective, and this includes difficult communication. This approach can be broken down into:
- Raising the topic and giving information
- Facilitating a structured discussion
- Completing the statement and recording it
- Periodically reviewing and updating the directives
- Bringing prior wishes to bear on actual decisions
The first two steps being relevant to communication in particular.
Step 1, raising the topic and giving information
This is usually the most difficult situation for most carers. The recognition that there are benefits to the process, for cared for and carer, is the first confidence booster. The second is having a previously thought out approach, or script, not to be stuck to without sensitivity, but as a means of broaching the subject and getting a discussion off the ground. A suggested approach could be “Mr/Mrs X, I would like to talk to you about your future care. We recommend that you give this some thought, and give us guidance on your wishes, then we know what you want from us and can follow your wishes as far as we are able. Our advice is that we should be prudent and have this discussion now.” “Also, should we ever be faced with a situation where we cannot communicate with you, we can still act in accordance with what you want.”
Carers, once this initial hurdle is over, will usually be able to steer the discussion in a positive direction, both reassuring and supporting the cared for during that process.
Step 2, facilitating a structured discussion.
Depending on the family situation and particularly the wishes of the care subject, family could be involved in the discussion. Caution is required, because it is sometimes the case that there is family conflict, even conflict between the care subject and their family, and the care subject’s wishes can be drowned out. It is up to the carer to seek out the wishes of the care subject on the involvement of other people and take them into account. The range of professionals to be present also requires advance thought and decisions. A new admission to a residential care home , where there are no immediate life threatening problems may not need as wide a participation as discussion of ends of life care with a person at known end of life and where complex medical and social needs can be accurately predicted.
The tools for a structured discussion are a list of the issues to be discussed, and a recording format to record the outcome of the discussion. Once the difficulties of broaching the subject as in Step 1 are overcome, it is normally relatively easy to hold an informal but focussed discussion on the known issues, and in particular support the care subject in identifying other issues which may be of particular concern to them. It is in the nature of end of life discussions and wishes that unforeseen and highly personal matters may come up, and the interviewer and recorder must ensure that the care subject has sufficient freedom and confidence within the structured discussion to raise issues which are particularly important to them.
Examples of the matters to be discussed can range from the concrete, such as who to contact and when in the event of a serious change in health state, to more statements of a more general nature, such as the care philosophy which the care subject wishes to experience. For instance, what are the care subjects feeling on matters such as medical staff making strenuous efforts to resuscitate, or engage in aggressive medical treatments? The interviewer can use examples in order to guide the discussion into useful areas, such as “say you were in a coma, maybe after a sudden stroke, and it was felt by the team, including your Doctor, that you have little hope of recovery, would you want us to place you on a breathing machine if you had pneumonia? Or maybe not use a machine at all, or maybe use a machine but if you did not improve, withdraw the breathing machine?”
One of the four elements of care identified within the programme and covered in a previous article is of particular relevance here; that is the subject of Information for patients and carers.
The NHS National End of Life Care Programme says this about information for patients and carers:
“People approaching the end of life, their carers, friends and families need to be able to access reliable and relevant sources of information as quickly as possible. This can reduce anxiety and enable and empower people to cope more effectively.”
Experience shows that lack of information, even withheld distressing information, is highly stressful. It is in the nature of us all that we fill in the blanks with our fears. Knowledge of the true facts allows everyone to begin the journey of adjustment which is required when anyone is nearing the end of their life. This applies to the service user themselves and those around them such as family, friends and carers.
Staff need to know what the facts are, what everyone knows, and what information everyone needs in order to be able to respond naturally, immediately, and truthfully at all times.
For those with a need for more information urgently, sources of further information are:
NHS National End of Life Care Programme.
Social Care Institute for Excellence (SCIE) Dementia Gateway.
The Gold Standards Framework.
The Marie Curie Palliative Care Institute, Liverpool