Before we became involved in the Gold Standard Framework programme we would meet with the multi-disciplinary team (MDT) once monthly. This meeting consisted of our district nurses, the partners from the practice and a specialist palliative care nurse. We would discuss a list of names of patients with cancer diagnoses who were at or near the end of their lives.
Around one year ago the end of life coordinator from the PCT approached us to ask if we would like to join the Gold Standards Framework (GSF) scheme (accredited by the RCGP). We agreed to do this to see if it could improve the quality of care that we delivered to our patients towards the end of their lives.
What we did
We met as a broader team consisting of district nurses, partners, HCAs, specialist palliative nurses and representatives from each of the nursing homes and residential homes in the area as well as a community matron. We then watched a series of around six DVD presentations related to the organisation of end of life care and the Gold Standard Framework. After watching we discussed suggestions and ideas that we had listened to as a team.
One of the key changes we decided on was to broaden the spectrum of professionals at the MDT meeting. This involved bringing in all the local nursing and residential homes to discuss their patients when they were nearing the end of their life.
The second change was to extend and change the patient group. Instead of discussing just our cancer patients at the end of their life, we extended the Gold Standard Framework list to include all patients nearing the end of life with a wide variety of diagnoses, including end of stage respiratory failure, cardiac failure, dementia, Parkinson’s and a variety of other rarer conditions.
The third change was that we started to work from a specific proforma. This coded all patients as blue, green, yellow or red. Each time we met as a team we would re-code each patient depending on their clinical status. There were a number of implications to the patient of being coded with a different colour. Blue implied reasonably stable clinical status, and patients in this position would simply have an out of hours message sent by fax explaining their diagnosis and management as well as their medication. (A key worker would be assigned at this point; this could be a GP partner or a specialist palliative care nurse, occasionally the community matron).
If the patient was deteriorating they would then move to a green colour code and at this stage we would discuss with them their anticipated needs and score with the Karnowsky index. We would fill out a DS1500 form to free up benefits and discuss their advanced care plan.
Once patients deteriorated further and became significantly unwell, they would be colour coded yellow and at this point we would also have discussed their preferred place of care for end of life, filled out the Do Not Resuscitate form and arranged for continuing health care if appropriate, as well as prescribing the relevant anticipated drugs. These would then be kept in the house with an appropriate syringe driver available if necessary. The resuscitation form would be faxed to the relevant ambulance and out of hours authorities, and an updated out of hours form would also be sent including all of the relevant information about their preferred place of care (and other relevant details such as the medicines in the house or the presence or absence of a catheter).
Lastly if the patient significantly deteriorated to the very last days of life they would go onto the Liverpool Care Pathway and be coded red.
We found the main benefit of this somewhat prescriptive and formulaic system was that it made us do each of these chores at the right time, so that most of the patients’ needs were anticipated. On the whole we felt this led to a real improvement in the palliative care that our patients received. Our patients in nursing and residential homes’ wishes about end of life care were more likely to be followed and in particular if an emergency was to arrive during a weekend, the patient’s wishes would already be clearly stated on the out of hours forms, and all other paperwork such as a resuscitation forms would have been completed in good time.
We have some provisional data suggesting that the proportion of patients on our palliative care register over the number of deaths in the practice population has increased from 22% to 32%. We also have data suggesting that the proportion of care home patients who have died on the palliative care register has increased from 14% to 36%.
The percentage of patients who died in their usual place of residence has increased from 48% to 66%. The percentage of patients on the register who were offered an advanced care plan has gone from 19% to 50%. The percentage of patients with a DNAR resuscitation form recorded has gone from 48% to 100%, and there has also been a significant increase in the number of carers offered a carers’ assessment and the percentage of patients offered bereavement information and support.
At the meetings we also perform an after death analysis on every patient who has passed away and try to learn from these cases as to whether there is anything we could have done differently. Finally we have updated our leaflets and bereavement information.
We were one of first practices accredited by the Gold Standards Framework following our work in the scheme.
We found this whole process extremely beneficial to our patients and would thoroughly recommend the Gold Standards Framework to other practices. Although this involves a reasonable amount of work the whole process was cost neutral to us.
Dr Damian Patterson is a GP in Shaftesbury, Dorset.