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Practical issues in initiating and performing Advance Care Planning
Advance Care Planning (ACP) can be defined as planning in advance for decisions that may have to be made prior to incapability or at the end of life. This, formal, definition points towards the normal use of advance care planning that is when incapacity or end of life is a known and short term prospect.
Instances of this use can be seen in the advocacy of and use of advance care planning in the Gold Standard Framework for end of life care (see http://www.goldstandardsframework.org.uk/), and other situations where end of life is known to be an underlying factor in care, such as hospice care and terminal care in a care home or domiciliary care setting. In these situations the recognition that end of life care is to be met with certainty leads to recognition of the need for staff training and education in the methods of advance care planning.
However, there are other situations where advance care planning is a useful and informative tool, but which are not in themselves categorised as primarily end of life care. In some care homes, and domiciliary care situations, the care receiver has made a decision in entering into the care situation that they will remain in that situation until the end of their life, even though they, their carers and their family assume that actual end of life is some way off, and certainly not imminent. But, end of life is a certainty for everyone, from the moment of conception.
Various factors militate against the consideration of end of life issues. One of the most significant is reluctance by carers to broach and affectively deal with the issue. It is often found that the highest level of reluctance is amongst the carers, and the cared for are 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 planning can lead to one of two situations should a person being cared for suddenly become unable to control their care environment, or communicate their wishes. In one instance, 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, and recorded, prior to that situation? In the second case, the wishes of the family take over. Family will, in most 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.
Therefore, it is essential that in care situations formally recognised as end of life, that advance care planning take place. This may expose staff that may be ill prepared for that situation to the stress of the process. A practical and sensitive approach, with specific objectives in mind, can allow the interaction required for advance care planning to take place positively.
Research has suggested that a planned approach can be effective. This 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
Step 1, raising the topic and giving information
This is usually the most difficult situation for 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, so that should we ever be faced with a situation where you have a life threatening illness, and we cannot communicate with you, then we know what you want from us and can follow them as far as we are able. This is not to say that we have any concerns about your health at the moment, but it is our advice that we should be prudent and have this discussion now.”
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 in attendance for this discussion. Caution is required, because sometimes there may be 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 no life threatening problems are foreseen, where the discussion will probably focus on personal feelings about general risks such as stroke, 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, as well as other issues which may be of particular concern to the care user. 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 issued which are particular 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 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 berating machine?”
Step 3, completing directives and recording the statement
This step is a part of the normal care planning process – this is the point where advance care planning and care planning as it is normally practiced merge. As in normal practice, the care plans or directives must be reviewed and agreed by the care subject and they must sign to indicate their involvement in their development and agreement with them.
Step 4, reviewing and updating the directives
Now that the difficulties of broaching the subject are overcome, and the results of the discussion have been integrated into the day to day care planning process, the regular review of the overall care plan will automatically create a review point for the advance care plan element, and allow the matter to be raised and discussed with the care subject during their normal involvement in the review.
Step 5, applying directives to particular circumstance
Having integrated the advance care planning elements into the full care plan, the danger of advance elements being ignored at the appropriate time are greatly reduced.
Breaking advance care planning down into steps, and taking a thoughtful and thought out approach to it, can allow the very valuable, even essential, tool to be used more widely and more effectively than is often the case.
The recording of the care subject’s advance wishes can allow carers to be much more confident during end of life care that they are doing what they all want to do, that is to respect the wishes of the person they are caring for. In some cases, it can also allow carers to more easily confront families when those families express wishes which are in conflict with what the carers know are the care subjects own wishes.