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.
The need for improved communication both between different parts of the health service and between the different service providers and patients/families/carers was consistently raised. As part of this, improved information sharing, particularly in relation to EOL plans (e.g. CMC) was highlighted on a number of occasions.
Challenges around language, faith and culture were raised in the discussion and highlighted by specific examples participants gave.
Dying at home vs hospital vs hospice
- Dying at home can cause logistical challenges for different faith groups, such as receiving death certification when a GP is not available. For example, a Muslim family, known to a participant had to travel to get a death certificate signed by the GP in a car park so as to bury their family member the next day.
- Therefore, seen as better/easier to die in a hospital environment for some faith groups as they (the hospitals) have the infrastructure and cultural competence to better serve their needs (although there are also issues where you may have multiple family members trying to visit the hospital to pay last respects).
- Many patients may say they wish to die at home but even with 3x nurse visits a day and night support it can be exhausting for the family member(s)/carer who get little sleep or rest. Also, at home it can be very difficult with, for example, pain relief when it’s urgently needed out of hours (e.g. 2 am).
- We should note that home environments can differ massively across NW London – some people have small flats not large houses that are not suitable for home care and the hospice environment can be better.
- Caring for a patient at home can be very difficult – people can lack the proper support or facilities (e.g. appropriate bathroom/toilet) at home and struggle to accommodate family visitors.
- Hospices are not tailor made for large visiting groups and can lack the religious aspects certain communities require (e.g. an Iman or Priest who can counsel the patient in final hours and help people/families accept the death of a loved one).
- Carers/families looking after a patient at home can really struggle with a lack of support in out of hours care.
- In terms of administering drugs at home, and no-one being there when the patient subsequently dies, an attendee pointed to the problem that the police can then end up getting involved.
- What happens to people in hospices that lack family/friends – who sits with them in their final hours and speaks to them / holds their hand?
Help, advice, guidance and information sharing
- The help and information from social workers needs to be improved – with factual advice on what peoples’ rights are around death.
- Patients/carers/families need a very simple information sheet saying who to contact and how at different points (e.g. GP, DN service, hospice specialist palliative care service). Importantly, we need to recognise that patients are not just Mon-Fri 9-5. What about outside of that and at weekends and bank holidays?
- We need to improve the links and information sharing between GPs and hospitals.
- There is a lack of consistency in record keeping around preferences, treatment etc.
- The demarcation between health and social care is significant and is not properly understood in the community.
- The most important point is that, in the final hours of someone’s life, agreement and coordination with the family is very important – when you are in the grieving process it can be easier if everyone does their job properly and well.
- All patients and families/carers need an up-to-date and fully completed care plan – that they have full access to – this can’t be a static document, it has to change as the situation with patient changes.
- The care plan needs to be a living document that the care team, ambulance staff, DNs etc should all be able to easily access.
- Will the patient and carer/family be able to access the new care planning tool and what is the process for input into it?
- The care plan should be partnership, not just a clinical process. It requires multiple levels of input – from community services, carers etc.
- The carer/friend/family member needs to feel more involved in the process – there needs to be better communication with them.
- There needs to be better post-death bereavement support for carer/family/friends.
- We need a clear final days/hours plan which lists the support available to patients/ carers/families and what they can/should expect (note the additional challenges where the patient has dementia).
- They need information/leaflets etc – something which clearly breaks down what is available, including exactly what to do out of hours.
- We need to be aware that many patients/families/carers are not compute literature and that people need help with this (in terms of filling in an EOL plan/document but also using email and text).
- The link between the ambulance service and A&E (and other parts of those providing care services) and access to (and use of) existing Coordinate My Care Plan(s) need addressing – the info they need or request should be in these plans and it’s shocking that the communications and information sharing are so bad.
- GPs need to have a role in coordinating completion of CMC or the new Urgent Care Plan, this can be complicated by patients rarely seeing the same GP and having chance to build a consistent relationship.
- It would help if families had a single point of contact for their relatives’ care.
- We need a more person-centered approach.
- Hospice success is in consistency and 24-hour approach to patient care.
- We need better collaborative working, training and structures – consistency is paramount and means individual needs will be better understood.
- We need more specialist teams with specialist resources.
- Time is of the essence in terms of making system changes to improve the situation and current experiences.
Specific needs of different groups
- It’s felt it’s easier to deal with the more established faiths (suggestion that there are at least 15 different religious groupings across NW London).
- Younger members of faith groups can be less aware of the faith’s requirements around death (e.g. next day cremation) – they need social care professionals to help them with this as well.
- There are questions over when palliative care begins when dealing with frailty in some patients.
- Some communities come from countries without palliative care so find the service a welcome and positive thing – they may not know it exists though and the communications issues are further complicated by language and needing someone or something to explain it to them so they can understand what is available and how to access it.
- Different groups can struggle to access palliative care services – it can be unclear if this is through the GP or social services and then where do different service providers fit within care services provided (e.g. district nurses).
Specific examples given by participants
- Participant experienced EOL care in last year. Their mother died at home (as she wished). The GP Service was good and correct equipment was delivered (e.g. hospital bed). However, it was extremely confusing who to phone/contact at different times, particularly out of hours. They knew the District Nurses would be attending the house but not always when. Following her mother dying and before a doctor had attended to certify, a team arrived (at 3am) to collect the equipment from the house. This was not due to an emergency but because it was a quiet time when they could get such equipment runs done. This displayed an awful lack of sensitivity.
- Participant currently cares for her father at home (where he wishes to stay as long as possible). He ended up being taken into hospital, where it took two days for them to contact her and enquire as to what medication he was on. She had to try and find out via GP and hospice advice line. Very distressing as she didn’t know. He also wasn’t eating at the hospital because his menu/diet was not appropriate. He didn’t recognise what was served as food (and the hospital seemed unaware of its own specialist menu or why it existed, i.e. for patients like this). She ended up cooking three meals per day at home to then take into the hospital for him. She eventually forced his discharge to bring him back home so she could care for him better there. St Luke’s provided very helpful information and a booklet (through Dementia Cares) helped her list out some key facts about her father’s likes/dislikes/ daily schedule (e.g. what he will eat, when he wakes, when he goes to bed etc). Her biggest anxiety as a family carer is that they will be put her father into hospital again – she stated that she should see hospital as a safe place but it feels like the worst place possible – he’ll go in and it will be like a black hole with her having no idea who will be caring for him and a complete information blackout. This places huge anxiety on carers and families.
- Participant lost their 97-year-old mother two years ago. She was originally admitted to hospital after a heart attack and had a pace maker fitted. Whilst at the hospital, the family received different information from different clinicians and eventually found out she was to be discharged home, even though she “couldn’t lift a glass of water”. The family were informed that carers would be put in place to assist. After equipment was delivered to the home, her mother suffered organ failure and was instead kept in hospital (although her desire was to die at home). The family asked about hospice care and was told this would be no different to that provided in the hospital. In General, family wishes were not respected. She was kept on a general ward though she was eventually moved to a separate room (after 2 days of family requests). Whilst in the separate room, there were not enough staff to clean her, so her daughter had to do this herself. The way she died and was treated still hurts terribly three years later.
Further issues raised
- One participant noted that the area (NWL) has a very limited number of hospice beds for the 500000+ people it covers.
- Pembridge Palliative Care Unit – a participant asked what the plans were for Pembridge. The review team said that no decisions had been made but that if it’s closure were to be part of the review then it would go to full public consultation.