Summary of findings

Our full report provides detailed discussion of the feedback we received. Below is a summary of the main themes that emerged.

The benefits of palliative care and what it means to participants

Participants emphasised that this type of care ensures the needs of the patient are met and provides a support network for both the patient and their family. They also noted that palliative care aids in medication and symptom management, and keeps the family informed about the patient’s condition. This involvement helps alleviate the stress and emotional worry of their family and friends, knowing their loved one is well cared for.

Participants had diverse interpretations of palliative care. Some viewed it as end-of-life care or for life-threatening conditions, while others saw it as care for incurable conditions without a specific time limit. There was general agreement on the ambiguity about when to start palliative care, and experiences varied among participants. Misunderstandings, such as palliative care being more applicable to conditions like cancer, were observed and the need for better public understanding was emphasised. Some participants realised they were providing palliative care as care givers without prior knowledge.

The shift from general to palliative care was seen positively by some, focusing on the patient’s quality of life and comfort despite the lack of a cure. Palliative care was described as comprehensive, covering aspects like pain management and facilitating patient activities, supported by various staff and respecting the patient’s desires and needs. Some participants deemed palliative care to be better than general care.

Palliative care timing and scope

Participants advocated for early introduction of palliative care, ideally from the time of diagnosis, to help patients stay well longer, aid in planning and facilitate informed decision-making. They emphasised the importance of establishing trusting relationships with patients and their families early on, and tailoring care to the individual’s preferences. They also highlighted the need for ongoing support, even after a patient’s death. However, many participants were unaware that palliative care could be provided early on and felt that medical staff often struggle to recognise when it was needed and to discuss it appropriately.

The preference for a single point of contact, such as a palliative care nurse, was expressed. Participants also discussed the need for additional support, including financial and emotional assistance. While some shared positive experiences, others reported negative ones, such as a lack of awareness of available support, having to conduct their own research, and anxiety due to their role as a carer. Issues with accessing information about palliative care, particularly online, were noted and more promotion of end-of-life websites was suggested. Limited choice of clinicians and a "postcode lottery" affecting the availability of palliative care were mentioned, particularly by participants in rural and island settings.

Specialist palliative care

Participants discussed the differences between general and specialist palliative care. General care, often provided at home by family or carers with GP or community nurse support, is contrasted with specialist care, which involves specialised staff and equipment in a medical setting or at home. Some participants expressed a need for greater public understanding of these differences, as many people are unaware of this distinction. They stressed the importance of clear communication when palliative care is needed, as the language used can be confusing. The significance of specialist palliative care was particularly prevalent in discussions with parents.

Raising awareness and promoting better understanding of palliative care early on

Participants discussed the importance of early and accessible information about palliative care for patients and their families. They identified challenges in obtaining this information, leading to delays in accessing necessary support. Opinions varied on who should raise palliative care awareness, with suggestions ranging from clinicians to guidelines for initiating conversations. The consensus was that the information should be simple, practical, positive and provided as early as possible. It should cater to different sensitivities, conditions, cultures, and locations and guide individuals to relevant resources.

However, participants acknowledged the difficulty of signposting in rural areas due to limited service awareness. Various formats and platforms were suggested for information dissemination, including leaflets, posters, online platforms, TV, radio, newspapers, GP surgeries, hospital clinics, social media, community groups and school curriculums. In addition to public understanding, the need for frontline health and social care staff to have a thorough understanding of palliative care was stressed. Participants suggested visual based training with simple, practical language and the elimination of jargon to simplify communication.

Staff involvement and providing palliative care during other treatment and care

Participants discussed that the provision of care should not be limited to healthcare professionals like GPs, nurses and specialist clinicians. They advocated for a holistic approach, involving non-healthcare roles, potentially including social care, mental health support, voluntary organisations and the private sector. They emphasised that the support provided should be tailored to the patients’ needs, possibly involving specific roles like physiotherapists and occupational therapists. Participants also stressed the importance of information-sharing and good communication among all involved, to ensure a coordinated approach, clear understanding of roles and continuity of care.

Participants discussed best practices for delivering palliative care, highlighting the importance of involving palliative care providers from all sectors in the communication process, the need for the patient and their family to have a voice and be listened to, emphasising a person-centred approach.

The necessity of having a professional lead or coordinator to ensure effective communication within the palliative care team was highlighted as were differing views on who should coordinate palliative care teams. Some people suggested a GP, but others pointed out potential issues with this, such as other responsibilities and availability. The significant roles of occupational therapy and physiotherapy in palliative care were discussed, with therapists often providing essential physical aids to patients.

The value of palliative care and ensuring it is provided in the right way for everyone

Participants highlighted the importance of fostering relationships, the importance of a non-judgemental approach of staff, and the value of small gestures. Effective and timely communication between staff and patients was seen as crucial. The environment was also a key topic, with participants preferring a safe, comfortable and trustworthy space although opinions varied on whether hospitals or hospices could best provide such an environment. The possibility of care at home, including access to pain relief or specialist equipment, was discussed, acknowledging that patient needs may dictate the best setting.

Discussion took place around the provision of palliative care and the challenges faced, including the importance of communication and availability of information for everyone, regardless of their health condition or background. The need for parents to be listened to, respected, and dealt with honestly by professionals along with the importance of early discussions with patients and their families to share information about support, how to access it and what to do in a crisis.

Participants noted a need for specialised training for nursing staff to provide specialist support, which is often hindered by lack of funding. Challenges in accessing support when it is not available locally and lack of continuity in support between boards was also highlighted along with the need for consistent support across regions throughout Scotland.

Areas for improvement in palliative care

Several key areas for improvement were identified by participants:

1. Person-centeredness and communication: Participants emphasised the need for early, meaningful conversations with patients and their families, having a named person for support and coordination, and continuity in staff to improve relationships and communication.
2. Information provision: Participants felt that information should be readily available, up-to-date and include clarity on what palliative care is, with clear explanations of what to expect at all stages. This should also cover financial implications, costs and other forms of support.
3. Improvements to support and training: Suggestions included bereavement support, early discussions about power of attorney and guardianship, peer support and befrienders to combat loneliness. There was also a call for more staff training, particularly on how to have difficult conversations and show empathy.
4. Standardised pathway: Participants highlighted the need for a standardised pathway of consistent, accessible and local palliative care services across Scotland, especially for those from rural and island communities.
5. Transition between child and adult palliative care: Some parents discussed the need for improvements in the transition between child and adult palliative care.