We would like to say thank you to everyone who attended the event. Their thoughts and feedback will be used as evidence as we move forward to develop the future model of care.
View the presentation.
View the recording of the meeting.
Key highlights from the event (below)
A public webinar was held on Wednesday 11 May 2022 entitled: ‘What does safe, equitable and excellent patient experience look like for people at the End of Life?’
A presentation was given covering the NWL community-based specialist palliative care review and palliative care in Harrow. This was followed by a discussion with attendees.
The key points raised in this discussion are covered below:
What is good and what should be improved?
What good looks like - every patient and family choosing where they want for their place of care and death.
Improving community-based palliative care – information and outreach were cited as important areas for improvement to build awareness of the services available and confidence in the services delivered. This needs to go beyond leaflets and websites and tap into the community channels and grassroots community groups that worked so well during the pandemic. It also needs to be consistent and ongoing – not a one-off communications push - and involve listening.
The care setting/environment
Benefits of different care settings - There is far more direct assistance in a hospital setting, rather than just one person trying to navigate a system alone from home. Also the use of oxygen and pain relief feels much safer in a hospital or hospice environment.
Cost of hospital care vs care at home vs hospice– an attendee asked about the relative cost of hospital care vs care at home vs hospices. In response the panel noted the answer was complicated (e.g. the number of hospital and acute beds, relative conditions in the hospital, the support provided in the hospice) and they wished to concentrate on what the service for end of life care should look like based on what people say they need and want and then consider what this may mean for budgets/services.
Suitability of the home environment - Many patients wish to die at home but their home environment may not by suitable or large enough to accommodate their medical and family visiting needs. Also, at home there will often not be a clinical person there to explain any health questions (e.g. is the patient in pain? what stage of end of life are they?) or to administer treatment (e.g. pain relief immediately when required). Whereas in a hospital, there is that clinical advice and oversight and the ability to respond immediately to patient needs. This can mean the hospital environment is more reassuring to the patient and family.
Improving care and support in the home environment - this requires 24 hour services, clear communication with the family, including honest management of expectations on what can be delivered and what they need to do when they need help (e.g. who to call, ideally a single point of contact, not to be waiting for pain relief), and a more consistent approach to staffing/visiting (e.g. not multiple visits from different staff members across the day)
Means testing – a question was raised about whether people would be means tested for their end of life care at home. The panel agreed to investigate this and circulate a response.
Final passing in home environment - patients suffer different difficulties in their final moments and as part of this pain relief and what to administer ‘when’ is distressing for family, even for those families/carers with a high level of medical experience or input
Challenge of securing a death certificate – when a person dies at home and a GP is needed to allow for prompt cremation, when a community’s beliefs and practices require it.
Supporting carers
Carers needs – these also need to be better supported in many ways (training, information, reassurance, respite support, bereavement support).
Challenge of family carers dealing with end of life care at home for a relative – there is little training or preparation for the situation people find themselves in (e.g. lifting and handling) and greater support is needed ideally from a team of people (not just an advice line).
Role of volunteers – one attendee suggested using volunteers as part of the community outreach and the support to carers looking after a loved one at home. As with the pandemic vaccination programme.
Other issues/comments
The importance of the period leading up to the final decline – quality of life in this period is incredibly important and it is challenging in a home environment – (e.g. a carer may not be able to lift the patient, help with washing and bathroom visits). A big Challenge is making it easier for the family to care for the patient in this period.
Importance of GP/patient relationship – one attendee emphasised the importance of the local GP building a trusted relationship and connection with the patient being cared for at home. This can be very reassuring to the family, particularly where the GP can visit and spend some time talking with the patient and family about what is happening (and is likely to happen) as they approach their end of life.