Palliative and end of life care Top 10

  1. What are the best ways of providing palliative care outside of working hours to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.
  2. How can access to palliative care services be improved for everyone regardless of where they are in the UK?
  3. What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when?
  4. What information and training do carers and families need to provide the best care for their loved one who is dying, including training for giving medicines at home?
  5. How can it be ensured that staff, including healthcare assistants, are adequately trained to deliver palliative care, no matter where the care is being delivered? Does increasing the number of staff increase the quality of care provided in all settings? To what extent does funding affect these issues?
  6. What are the best ways to determine a person’s palliative care needs, then initiate and deliver this care for patients with non-cancer diseases (such as chronic obstructive pulmonary disease (COPD), heart failure, motor neurone disease (MND), AIDS, multiple sclerosis, Crohn’s disease, Parkinson’s disease, dementia, and stroke)?
  7. What are the core palliative care services that should be provided no matter what the patients’ diagnoses are?
  8. What are the benefits, and best ways, of providing care in the patient’s home and how can home care be maintained as long as possible? Does good coordination of services affect this?
  9. What are the best ways to make sure there is continuity for patients at the end of life, in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case coordinator improve
    this process?
  10. What are the best ways to assess and treat pain and discomfort in people at the end of life with communication and/or cognitive difficulties, perhaps due to motor neurone disease (MND), dementia, Parkinson’s disease, brain tumour (including glioblastoma) or head and neck cancer, for example?

The following questions were also discussed and put in order of priority at the workshop: 

  1. How can people who live alone and do not have any friends or family nearby receive adequate palliative care, particularly if they wish to stay in their homes?
  2. What are the best ways for healthcare professionals to tell patients, carers and families that a patient's illness is terminal and also explain the dying process compassionately and honestly?  Can literature, including leaflets, be helpful?  Who is the best person to provide this information and communication? 
  3. What are the best ways to facilitate communication across services and between healthcare professionals, including effective IT systems, team meetings and remote technology?
  4. What is the best way to give palliative care to patients with dementia and their carers and families?  This includes communicating about their diagnosis when they are being cared for at home or elsewhere?
  5. How can distress that is not related to pain be best assessed and managed in palliative patients with dementia, Parkinson's disease and other diseases that affect communication?
  6. What are the best modes of palliative care in an acute setting, such as a hospital?
  7. What are the best ways to diagnose and treat delirium, agitation, distress, and restlessness in people at the end of life?  Which sedative drugs (such as midazolam, haloperidol and levomepromazine) are most beneficial and best in terms of side-effects?  Do these drugs have an effect on other symptoms?
  8. What are the benefits of, and best approaches to, providing palliative care in care homes, including symptom relief, emotional and spiritual support for patients, carers and families?
  9. What are the best ways to make sure that palliative care patients receive adequate pain and symptom relief and which drugs for pain management are best in terms of side-effects, such as drowsiness?  What are the best approaches to giving medicines such as morphine, for example using different cannulas, such as BD-saf-T-intima?
  10. What are the best ways to manage acute and/or chronic breathlessness in patients with cancer and non-cancer terminal illnesses?
  11. What are the signs that a person will die in the next few days and how can detection of these signs be improved?  How can families be made aware? 
  12. Is there an appropriate time to withdraw artificial hydration and nutrition (for example, a drip) and how can this be done sensitively and consensually?  What is the best way to communicate with the carers and family about this process?
  13. What are the best ways to recognise and treat depression, anxiety and low mood in people who are dying?  What are the pros and cons of different psychotherapeutic interventions, including drug therapies, and when is the best time to provide them?
  14. What are the best care packages for patients, carers, family and staff which combine health care and social care and take individual prognosis into consideration?
  15. Are outcomes (for example, symptom control and incidental prolonging of life) better for terminally ill patients the sooner palliative care is introduced and services are accessed?
  16. What are the best ways to support children and young people when someone close to them is dying or has died?  This includes communicating with them about the diagnosis and dying process, enabling them to talk about their experience and providing bereavement support.
  17. What are the best treatments for nausea and vomiting (including for people with bowel obstruction and those having palliative chemotherapy)?
  18. What are the best ways to manage the problems associated with difficulty in swallowing, including drooling and excessive salivation, for patients with Parkinson's disease, motor neurone disease (MND) and dementia who are at the end of their life?