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 key issues raised in the discussion included: the need to identify as early as possible that someone is dying; the need for better information on services available and how to access them (including for ethnic minorities); the need for a better way to coordinate the care being given (and the potential role of a single point of contact or advocate in this); the confusion caused by the sheer number of service providers involved in end of life care in the home; and the need for clear information on the steps to be taken when someone eventually does die.
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- One attendee questioned the difference between palliative and end of life care and public confusion around the two terms – in response the panel accepted these were technical terms and pointed to the fact that there is a period of time where people are in the last phase of their life, but they may not be dying; that conversations about supporting people in their end of life decisions and that providing palliative care is not exactly the same as supporting people who at dying (right at the end of their lives).
- The impact of COVID-19 on death rates; the need for services to support more patients dying; increased engagement with CMC plans and difficulties in enabling people to die at home during the first COVID-19 wave were raised.
- The need to identify that someone is dying and recognise this earlier was identified as an important point that feeds directly into the patient and families choices about appropriate treatment etc
- Lack of prompt and timely communication in palliative and end of life care came across in a number of comments, with COVID-19 making this worse.
- The challenges for non-English speakers in coordinating end of life care were raised, particularly given the complexity of service providers and being clear of which one is responsible for different elements of the patients’ care.
- The challenges in increasing understanding amongst some ethnic minorities of what end of life support and services are available was raised
- The confusion caused by the number of service providers/different elements involved in providing end of life care in the home environment was highlighted. Even where those services are good and valued by the patient/family, it’s still hard to understand exactly who is responsible for what and who should be contact at different times for support/assistance. The possibility of a single point of advice/contact was raised as part of any solution to this.
- The services and support provided by Marie Curie were particularly praised
- Need to better understand how these services are delivered in other boroughs, particularly rapid response
- People need flexibility in making their end of life decisions but, really importantly, they also need to be able to change their mind and their preferred end of life options if they wish
- We need to improve education around dying at home and if/when a patient doing so is sent to hospital for a perceived emergency (that is actually a part of dying at home) – though this is a very difficult area in which everyone is trying to do their best for the patient
- Another attendee pointed to the importance of having an effective advocate (from Marie Curie) to help patients and their families navigate the health system (GP/hospital/pharmacy/other providers) and services.
- The importance of support and practical advice on steps to take after a person dies was highlighted by a couple of attendees
- One attendee discussed their father’s death in the middle of COVID-19 including the difficulty in understanding how he was being treated (even as a health professional working within the health system), having to actively campaign to make staff recognise he was dying, failures in communication with the family and the difficulty in trying (and failing) to get him discharged so he could die at home.
- An attendee discussed their experience of end of life care with their mother, who had cancer. They found the information and communication they received to be very slow and that this made it difficult to decide whether to take her home or to a hospice – a decision that then had to be made at very short notice. When she was in the hospital, they found there to be a lack of involvement of ethnic minorities (and understanding of the challenges for some patients and families in understanding spoken and written English) within the decision making. Once in the hospice environment, the family felt more involved and informed in the decision making.