Over the last 45 years the hospice movement has set the standard for caring for people who are approaching the end of life. The levels of services have been developing steadily and the quality of care has been of the highest standard. An unintentional consequence of the development of end of life services has been that the care has become professionalised. Families naturally look for professional care as their loved one becomes increasingly unwell. In addition, although healthcare professionals look to see what care the family can deliver, the main focus of supporting people at home is the addition of a variety of professional care. Culturally, we have lost something of the traditional role of the community caring for people who are dying.
There are two components to this proposal. The first part relates to involving the network of family and friends supporting the dying person and carer at home. The second part aims to build compassionate communities who can help to support end of Life Care in their own community.
- Developing family and friends networks
Caring for the terminally ill relies heavily on the support of family and friends. Often there is a very natural reluctance to ask for help from even close family members. Even if people offer to help, it is not always clear whether help can be given. Furthermore close carers may feel a sense of value in maintaining their role without asking others to help.
There are a wide variety of tasks that need to be completed in order to keep someone at home. These include cooking, cleaning, shopping, washing, dressing, visits to clinics, feeding, medication, collecting prescriptions, and toileting. Some of these tasks may be small in themselves part in combination add up to a large burden for one person.
We propose that developing a network has two phases.
Firstly, for each patient a map is drawn of close family members and friends. If possible a person who would be prepared to be the main coordinator is identified on this map.
The second phase is that a chart of the week is drawn up with all the tasks listed down one side. The coordinator then decides with the main carer and the patient of the acceptability of asking people for help, in a regular and organised fashion. An explanation that can work well in this circumstance is that caring for somebody with a terminal illness is more of a marathon rather than a sprint. Keeping the carer has supported as possible is a key component to maintaining the patient at home. Even small amount of input can help significantly. For example the lift to the shops once a week may be very helpful. Somebody sitting with the patient whilst the shopping is done can help to give the carer a break. Sharing the tasks out in an agreed way can help to spread the load of care. The coordinator maps family and friends on to the chart.
The ideal time to start thinking about these kind of arrangements is when the discussion of advance care planning is started. At the hospice, advance care planning discussions are usually started by the specialist palliative care community nurse. Planning for care fits easily into thoughts about the future. The advantage of starting at this point is that care can be increased as the patient becomes less well.
A common experience for many people once the patient has died here is that everyone disappears after the funeral, leaving the care and feeling lonely and unsupported. However, in this arrangement regular contact can be maintained and gradually withdrawn as the sense of loss and loneliness lessens. The Healthcare professionals involved in which support the coordinator in drawing up a plan and look to see where there are gaps. These gaps could then be filled by existing professional Care Services.
- The second phase of the project is the development of compassion in communities. Each time a family network looks after their terminally ill loved-one, they develop skills and expertise on how to do this. These skills are a resource for communities. The closest Health Care professional to the patient could ask the developed network if individuals would like to volunteer to help other people in their locality who may be in a similar situation either now or in the future. For those people who are prepared to do this the details could be kept as a resource and they could be offered more formal training as a volunteer. For people who have a small network, it is much easier to ask whether they would accept help from somebody who lives in the locality who has been through a similar experience. They may well be a neighbour who already knows the family concerned.
Over a period of time, communities could build up a large network of you who are prepared to support their neighbours in the end of Life Care. In this way, end of Life Care is handed back to the community in which it belongs, supported and aided by Health Care professionals.
We propose that Weston Hospicecare run a project on developing compassionate communities. We think that the community specialist palliative care nurse is the ideal person to start the process of identifying the key coordinator and providing supportive documentation. This would follows naturally from starting advance care planning discussions. We know from our records that these take place on average three months before the patient dies. If there is no obvious person to do the coordinating, the palliative care nurse could fulfil this role.
We think that there will be, particularly initially, a significant time input which will have an impact on the palliative care nurses job. For this reason we would like to employ another specialist palliative care nurse who can act as backfill.
We think that the volunteer carer programme would be ideal in developing volunteers for particular neighbourhoods. We intend to start the project apply targeting the small number of GP practices so that we can build up a neighbourhood resource. When a new patient within that locality needs support, the hospice could then use the resources held by the volunteer carer programme.