Findings of the Public Consultation on Living and Dying ......Advance care planning (to gain information on wishes, and in particular early care planning ahead of cognitive deteroiration)

Findings of the Public Consultation on Living and Dying Well in Lothian.

Prepared by the Lothian Palliative Care Steering Group as part of the development of the Lothian Palliative Care Strategy 2010-2015: Living and Dying Well in Lothian

March 2010

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Contents Summary.......................................................................................................................... 3 1. Findings of the Consultation Process........................................................................... 4

Analysis by Question Question 1................................................................................................................. 4 Question 2................................................................................................................. 6 Question 3................................................................................................................. 7 Question 4................................................................................................................. 8 Question 5................................................................................................................. 9 Question 6............................................................................................................... 10 Question 7............................................................................................................... 11 Question 8............................................................................................................... 12 Question 9............................................................................................................... 13 Question 10............................................................................................................. 13 Question 11............................................................................................................. 13 Question 12............................................................................................................. 14 Question 13............................................................................................................. 14

2. Consultation Methodology.......................................................................................... 16

Background of the Palliative Care Consultation Process............................................ 16 Materials to Support the Consultation......................................................................... 16 How the Consultation Exercise was Completed ......................................................... 16 Analysis of the Responses ......................................................................................... 18 Evaluation and Future Work ....................................................................................... 18

3. Change and Development of the Strategy Based on Feedback from Consultation.... 20 Appendices

Appendix 1: Respondents to the Palliative Care Strategy .......................................... 26

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Summary The consultation report This report details the findings of the palliative care consultation exercise, provides information on what was consulted on, the method of consulting and details future evaluation work. The key findings of the palliative care consultation are outlined in pages 4 to 14 of this report. Pages 19 to 23 detail the areas of change and development of the strategy based on findings from this consultation. Overview The process of engagement for the consultation was developed with input from a range of stakeholders including the NHS Lothian Communications team and in conjunction with the Scottish Health Council (SHC). The advice and support from the SHC was sought from an early stage and their suggestions were incorporated into the consultation exercise. The consultation ran for 3 months between mid November 2009 and early February 2010. There were two key strands to the consultation: consultation with health and social care professionals and consultation with the general public. A range of materials were prepared to support the consultation process, including a website and specific e-mail box for responses, a summary version of the draft strategy, and an easy read version of the draft strategy (prepared with support from colleagues in Learning Disability, for people with cognitive impairments). All information was placed on the website including the full version of the strategy, summary and easy-read versions, and all the supplementary reports prepared as the strategy was developed. Posters were printed which provided information on the consultation, how to get more information, and the deadline for consultation responses. Healthlink and Connections were used, and copies of the strategy summary document were distributed through Lothian libraries. Various workshops and meetings were organised and delivered, both with professional groups, public and community groups- comments gathered at these meetings have been fed into the consultation analysis. 90 responses were received in total. All responses were coded and entered into a spreadsheet model based on the 13 consultation questions asked. Response themes running through each question were analysed. Overall the draft strategy was welcomed, with many very positive comments and encouragement. People were not only supportive of our aims and objectives but on the whole offered considered and thoughtful feedback which has greatly assisted us in adapting our aims and in doing so making them more feasible and deliverable. The focus is therefore on whole system quality improvement initiatives, with a particular focus on community settings, and strong support to continue to improve systems of identification, care planning, assessment and support, particularly to reduce the often erratic pattern of acute admission in the last year of life and maximise people’s time in community settings. This analysis outlined in the rest of this report provides not only the material used to finalise the strategy, but also a detailed outline of suggestions, guidance and actions to support implementation.

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1. Findings of the Consultation Process We received 90 responses in total, the breakdown is as follows:

Voluntary Sector Organisations 16Individuals 27Community Councils 5Health and Social Care 42

Total: 90 Of the 42 responses received from health and social care, 6 came from NHS Lothian Board Committees, 4 from Lothian local authorities, 7 from CH(C)Ps, 13 from the acute division, and 8 from other areas including Strategic Planning and Public Health. The word respondent is used to cover those replied to the consultation in writing, via email, attended a consultation event/ meeting or gave comments over the phone. Analysis by Question Question 1 Choice (of place of death) - Many studies suggest that more people would prefer to die where they live, rather than in a hospital setting. Do you agree? How can we best support this? There was considerable feedback on this question with a high volume of responses (almost all responders answered this question). There was universal agreement that asking for and recognising individual preferences, and offering a choice of place of death was important. Most responders supported the assertion that more people (than currently do) would prefer to die where they live, rather than in a hospital setting. Many of these respondents were clear that ‘where you live’ did not need to be restricted to private domiciliary residence alone, but rather that care home and community hospital (where a longer length of stay may have been experienced) were also to be considered as places of residence. Most respondents did however state that being able to die in ones own residence was largely dependent on individual circumstances. For example, those people living alone, and particularly those with no family or carer support, would likely find it very difficult to achieve death at home. Equally, in some care homes staff may be unable to deal with the time and complexity required to adequately manage needs, without further staff training and support systems built into the organisation of care in the home. Many respondents stated that whatever preferred choice is stated, these decisions are fluid and can and do change over time. This is seen to be particularly true in the terminal stage of illness and the final days of life. Systems must allow for last minute changes to be acted upon. Many respondents flagged the important role of carers and family support, and indeed acknowledged that domiciliary deaths could be very stressful for family and carers.

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Some respondents felt that in future, over time, an increasing proportion of people would express a preference to die in their place of residence. Respondents stated that this would need to be balanced against the reality of achieving this for many, considering expected population changes which will mean a higher proportion of elderly people in society, some with caring responsibilities themselves, and many with complex needs and living alone. In summary, elucidating preferred place of death was supported, as was the provision of choice. However from the feedback received it is clear that the picture is not as simple as ‘more deaths at home’ and it is clear that choices must be considered with a realistic assessment of feasibility, delivery and support. There was clearly general agreement that more people may prefer a residential place of death. However, many respondents pointed out that a failure to achieve this should not be seen as a failure of the health and social care system or of the professionals providing care. It was clearly acknowledged that many individuals may either spend considerable time at home (including care home or community hospital) with a final admission to acute hospital (for example) at the very end of life where their death may occur. Minimising re-admission where appropriate and extending the length of time at home were viewed as the most important factors, not final place of death per se. One respondent captured the overall view well: What is important is a place where they (the patient and family) feel safe, comfortable and familiar – not necessarily home – and near friends and family. Key to this is being well supported throughout the palliative phase and process of dying, not where death actually takes place. Our finalised strategy will therefore reflect preferred place of death, supporting realistic choices, reducing emergency admissions where these could be avoided by good anticipatory care, maximising the time spent in people’s preferred place of care, and at all times providing care in the most appropriate (safe, comfortable and familiar) setting. The support required to support choice was described in responses, because the consultation question asked specifically about preference for death in residential settings, the feedback gained was principally about support requirements for deaths in residential settings.

Support for individuals to state their preferences, and communicate their wishes. Training for health and social care staff to be more confident in asking questions

around dying and death. Greater provision of respite care for family and carers. Specific support for care home staff (good relationships with GP practices,

specialist advice and support, including specialist nursing advice and support, tools and systems to use in the care home).

Provision of adequate and practical advice – where and how to get help, what’s available. Information in accessible formats.

Easy and timely access to equipment (this was raised by many responders as a problem currently).

Regular review of care plans (via schemes such as LCP). Acknowledge the greater challenge inherent in supporting those with dementia to

die in their place of residence. Advocacy services (especially for disabled people making choices about dying

and preferred place of care/death).

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Improved care co-ordination (especially as illness complexity is increasing. More complexity equals more to co-ordinate).

24/7 specialist nursing and support service for children in palliative care phases at home.

Advance care planning (to gain information on wishes, and in particular early care planning ahead of cognitive deteroiration).

Hospital design, especially for children’s palliative care, which supports ‘family life’ in the hospital. Often children’s palliative care takes place over many years and hospital, at times, can be ‘home’.

‘Step-up/step-down’ beds and better use of existing community hospital and ‘primary care’ / ‘continuing healthcare’ beds. Don’t introduce ‘palliative care’ beds at the expense of these generalist resources.

Question 2 Planning early - If someone is ill enough that their death in the near future would not be unexpected or surprising, then, as well as continuing care and treatment, we should be planning for ‘a good death’ at an earlier stage than is often the case now, perhaps as much as a year before death. Do you agree? How might patients, their family and carers, doctors, nurses, social care staff and others involved in care best approach this? Again, the vast majority of respondents answered this question. There was universal agreement for commencing planning at an earlier stage than is often the case now. However many, at least a third of all respondents to this question, agreed either in principal only or wished a caveat to be noted. The caveat, commonly stated in all of these responses, was that if such planning is to be undertaken it should:

Suit the patient (whether or not to have these sorts of conversation was seen as dependent on the patient, their condition, and general approach to life)

Consider the dynamics and needs within each family and support network Be undertaken at the patient’s own pace Not be a single, static, exercise but rather undertaken gradually and built-up over

time to inform patients and families and to paint a clear picture of their wishes and needs.

Many respondents discussed the benefits of such early and continuous planning, and some described the problems associated with the absence of good communication, planning and care co-ordination. Respondent: My late mother was able to plan her care with the excellent district nurse at that time. She had talks with her to prepare her for each stage of her illness. Having one person to contact was a key for her. The district nurse was someone who she got to know and trust. Respondent: There was an absence of discussion about what might happen in the future and it was a good GP who ultimately discussed the prognosis and how this might develop. Respondent: Our main frustration throughout the last year and a half was the lack of direction in her care. Her GP would come from time to time, was polite and thoughtful, but never really gave a sense of directing her care. The neurologist we perceived as distant and was coy

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about giving a diagnosis. (We seemed to find out about her condition almost by accident in the end!) What we really missed was a sense of someone holding the reins and organising her care. To us it seemed piecemeal and haphazard In relation to how patients, their family and carers (including professional care givers), and others involved in care might best approach earlier planning for a ‘good death’, the following was highlighted.

People need information on what such planning is and what it entails, why it is helpful, and how to access it (in accessible format)

Attempt to ‘normalise’ Advance Care Planning for the public The trigger for such planning should come from the patient and their carers Get the language right – not planning for death but planning for the next

deterioration, and eventually the last few days Explain terms clearly – Palliative Care, Terminal Care, End of Life Care. What’s

involved in each and what distinguishes each stage from the other Make advance care planning a ‘core element’ of service delivery and ‘really get

used of talking about it’ Communication skills training for staff viewed as very important underpinning Communicate information in a timely and sensitive manner Identify a lead professional for each patient / family, with whom the responsibility

for advance care panning would rest Regular multi-professional meetings to review and adapt plans with people Once a plan is in place, share the information between people and agencies to

make sure all involved in care know and understand Question 3 Hospices - Do you think that the expertise that hospices currently bring to helping people with cancer at the end of life should be extended to help other people dying with other conditions such as organ failure (e.g. heart, liver, or kidney failure), and diseases such as dementia? How might this be done? Respondents supported the extension of hospice expertise to those with life limiting conditions other than cancer. Many respondents however highlighted dementia as posing distinct service challenges, and particularly the need to avoid transfer of patients with dementia (for example to a hospice in-patient unit for end of life care) because doing so frequently causes patient distress associated with unfamiliar environment and routine. Patient safety (outwith a psychogeriatric or specialist dementia unit), and the potentially negative impact on the hospice in-patient unit, were also raised in relation to patients with dementia. Some respondents pointed out that children’s hospices have traditionally worked with children with a range of life limiting illnesses other than cancer and the model employed in children’s hospices may offer some learning. For example can we learn anything around developing ways of extending adult hospice care to adults with long term conditions. In relation to how we might extend the expertise of hospices to help those with conditions other than cancer; many respondents felt that specialist palliative care advice and support should be offered to services and units already supporting those with dementia, rather than focussing on caring for patients with dementia in hospice units directly

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Education of generalist staff to develop and improve their palliative care skills was seen as important and hospices were seen to have a lead role in this. Similarly education of undergraduate and post-graduate clinical staff was seen as important. Specialist staff from organ specific disciplines (cardiology, renal, respiratory medicine etc) should assist in educating hospice teams. The complexity of managing end of life care for those with non-cancer conditions was flagged by some respondents, and therefore the need for new knowledge and skills in hospice teams. Support secondments across settings – hospice to care home, NHS hospitals, community teams etc, and visa-versa. Training, advice and mentoring schemes should be available for those looking to increase knowledge and skills in palliative care. And equally, such schemes should be available for specialists in palliative care looking for knowledge and training in non-cancer conditions. Extend and develop the use of hospice specialist palliative care community teams, and other community based specialist palliative care teams, to support for example care homes, and to help maintain people at home for as long as possible. Some respondents stated that existing staff in NHS longer stay units and continuing care already had the skills to provide palliative and end of life care however these units did not have the same level of staffing or expertise as hospices themselves. Therefore more could be done to bring hospice support and ways of working into such NHS units. Question 4 Hospice inpatient care should be for the most complex cases that cannot be managed elsewhere, and should be available to everyone, not only those with cancer. Do you agree with these criteria for availability? The majority of responders agreed that hospice care should be for the most complex cases. However many respondents thought that hospice care should be available to all who may benefit, not restricted to level of complexity. A number of key issues were flagged for consideration:

If an overt admissions policy based on complexity is developed then the definition of complexity must be clearly stated in the policy. Many respondents described the need to consider social factors in addition to physical aspects such as symptom management, and other psychosocial aspects of clinical assessment and care.

Respondent: Complexity may not always be an issue for the patient’s care, but it could be an issue for the family or carer. Partners or carers who are themselves struggling with a medical condition, or patients who are isolated by being home alone might also be considered to have complex needs. There needs to be fairly clear guidance on this to help professionals make these decisions.”

Some respondents argued that even the most complex cases could and should

be managed in community settings, with outreach support from hospices.

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Equally a number of responses highlighted the need for generalist management of ‘non-complex’ cases in the community, with support and advice from hospice based specialists where required.

Respondent: We would encourage hospice services to do more work in a community based setting and to provide more services to people to allow them to remain in their own homes as long as possible.

Given the current need for training and skills development in non-cancer palliative

and end of life care, including the need to support hospices themselves in developing their own care provision, a few responses referred to managing the most complex organ failure cases currently either in settings more specifically designed to meet these needs (specialist wards, cardiology, respiratory medicine, renal etc), or in the community with joint organ specialist and hospice support. Over-time as skills, knowledge, pathways and models develop for non-cancer hospice based care then arrangements for care may change and develop accordingly.

Respondent: Yes: As present hospice care which specialises solely in the complexities of this with carcinoma is not adapted (or staff trained) to deal with the palliative care needs of patients with a series of added complications related to other conditions.

In relation to paediatric palliative care the question was deemed to be irrelevant

by most responders who referred to children’s services. The model followed by children’s hospices involves providing support and respite care often over a long period of time, unlike adult hospices which are mainly focussed on end of life care.

Respondent: We do not agree with this for children’s hospices. The nature of palliative care for children is different to adults because of the unpredictability of the child’s illness. Access to children’s hospice is vital at an early stage to provide ongoing support. This support may be longer term in comparison to adults.

Question 5 How might hospices themselves better organise or redesign their services to make them better fit the needs of people with non-cancer conditions? Most responders answered this question. A few responders chose not to answer, and many of these non-responses described a perceived lack of knowledge around how hospices currently work and therefore reticence to comment on redesign. A clear list of redesign suggestions however did emerge:

Names, logo’s, strap-lines and charitable company identity – are associated strongly with cancer. Potentially there is a need to widen and ‘re-brand’ and re-educate about the hospice organisation and what it is there to do.

Forge more links with non-cancer charities Learn from children’s hospices and how they do it – always dealt with conditions

wider than cancer

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Referral criteria needs to be clear and referrers need to be clear that hospices are open to referral for non-cancer related care

A number of responses referred to the need for a partnership between the NHS and Hospices to agree change and redesign.

Respondent: For hospices to re-organise or re-design their services to better fit the needs of people with non-cancer conditions, a formal partnership will be required between NHS Lothian and the independent management bodies involved. Such a partnership would need to take account of the voluntary funding of such organisations – bearing in mind that most specifically refer to cancer care. It is encouraging to note that such a partnership has clearly already been established by the launch of this joint Strategy.

A few responses focussed on how hospices might engage others in conversation

about how to redesign.

Respondent: Stakeholder days, questionnaires, forums and workshops would provide a range of platforms to ensure hospices themselves better organise or redesign their services to make them better fit the needs of people with non-cancer conditions.

Many respondents flagged education (of public, that hospices are not exclusively

for cancer related palliative and end of life care) and professionals (to ensure they know hospice is an option for non-malignant disease).

A number of responses highlighted the need to develop hospice outreach and community services, forge links with care homes, develop hospice volunteer services, develop day and outpatient services perhaps focussing specific sessions for non-malignant related activity, and consider learning from schemes such as ‘hospice at home’ and models of care delivered as part of these.

A number of responses described the need to integrate palliative care more throughout existing hospital systems (a wider point than hospice redesign alone), and for specialists in palliative care to develop further shared care arrangements with disease specialists.

Some responses referred to hospices learning how to adapt to offering support perhaps throughout a longer disease trajectory, common with many non-cancer conditions, developing the skill mix and knowledge of staff to better deal with non-malignant conditions, and potentially to develop smaller units / part of existing hospices as dedicated units for non-cancer care.

Question 6 Care homes - Supporting care homes to provide high quality palliative and end of life care for their residents is a key aim of this strategy. How might this best be done, and by whom? There was agreement that this aim should be pursued. Most respondents however raised issues concerning staffing levels, skill mix, staff turnover and time as key challenges associated with trying to educate, train and develop care home teams. Because of this, many respondents were cautious about a potential over-reliance on the ability of care homes teams themselves, independently, to offer reliably high-quality palliative and end of life care without continuous and structured support from partner organisations.

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Many respondents favoured the establishment of support schemes / named specialist liaison professionals / teams, whereby support and advice could be provided as required, particularly in relation to end of life care. Respondent: However in a significant number of care homes there would currently be insufficient staff available to provide good quality end of life care. The availability of peripatetic palliative care team to provide some of that (end of life) care would be beneficial in these situations. Respondent: It would work only with staff up-skilling and working in partnership with the local nursing, home care and palliative care teams. Respondent: Education from hospice staff. More staff for enhanced care when individual is at end of life stage. Respondent: We also suggest that in each Care Home Facility there should be a dedicated professional in palliative skills (Medical or Nurse-Practitioner) who would be available on instant call to prescribe appropriate palliative medications or specialized advice when required. There was support to assist care homes to develop more systematic ways of advance care planning with their residents. Some responses flagged the need to ensure good access to equipment. A number of respondents suggested more could be done to create secondment opportunities for care home staff to gain experience in palliative care or older people’s community care services, and visa versa. Some responses referenced the need to link to the Care Commission’s work to improve palliative and end of life care in care homes, including workforce planning and development. Developing links between palliative care services and community mental health services was highlighted in relation to improving care for those with cognitive impairment or mental health problems. Question 7 Upskilling generalists - The majority of palliative and end of life care is provided not by hospices or specialists in palliative care, but in hospitals and primary care by clinicians who are not specialists in palliative care. These may be generalists (for example GPs and community nursing teams, and consultants, nurses and allied healthcare professionals in hospitals). We believe that all healthcare staff should provide high quality palliative and end of life care, in all settings. Do you agree? What support is needed to deliver reliably excellent care? There was universal support for the assertion that all healthcare staff should provide high quality palliative and end of life care, in all settings.

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Education and training was the key requirement to support this. Some respondents stated that it was important to ensure that palliative and end of life care should be well covered in basic clinical training. Others referenced the potential need for mandatory annual updates.

Clinical advice and backup should be available from specialists in palliative care. Palliative care guidelines should be available easily, where and when they are

needed. Competencies in palliative care should be specified to underpin training for

generalist staff Action learning and mentoring should be considered as part of the support

available. e-learning resources should be available A number of respondents stated that there should be more training and education

opportunities available relating to non-malignant palliative care. Training in Advance Care Planning should be developed and delivered The strengths of generalists should be recognised – not about up-skilling in all

cases, more supporting generalists. Question 8 Responding to diverse needs - What are the key issues we need to further consider to ensure that palliative and end of life care in Lothian is provided in a way that is appropriate to the needs of the full range of diverse communities in Lothian? The key issues highlighted were:

We need to develop a single resource pack which outlines the different faith, cultural, and community customs in relation to death and dying. This resource should be available easily to all who need it and the content should be built into education and training programmes.

Geographical access was flagged by some respondents especially in relation to East and West Lothian where the distance to travel to a hospice is greater. This needs to be considered alongside the provision of outreach and support to local units.

Some responses referenced the need to consider further specific groups – deaf people, drug users, individuals with learning disability. Specifying and highlighting key common issues involved in caring for people in these groups was highlighted, as was the need to provide information to these groups on accessing palliative care.

The need for interpreters, available as required, was referenced in a number of responses.

The need to document and share information relating to particular needs noted in assessment was flagged by a number of respondents. Share the information so that all involved in care know and can act upon it.

Transitional care for adolescents was referenced, particularly in light of children with non-malignant conditions often surviving longer and into adolescence and young adulthood. Adult services may therefore now be beginning to see conditions that were previously only seen in children’s services.

The need to further understand access issues for the most socio-economically deprived was referenced, particularly in relation to the analysis that has been started on domiciliary deaths by deprivation category.

We need to monitor key data items to ensure that diversity data is both part of assessment and picked up in datasets.

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Question 9 Key challenges - Have we correctly identified the key challenges in the strategy? These are outlined on page 2. More information can be found on page 16 of the draft strategy. The majority of responders felt that the key challenges were correctly identified. However, several important areas where also highlighted for further development or inclusion in the finalised strategy.

Support for carers as partners in care needs to be more strongly recognised throughout the plan and in the key challenges

Bereavement care – to be referenced in the key challenges (to better reflect the new concept of palliative care that underpins this strategy). Additionally, in anticipation of the guidance expected later this year from the Scottish Government Working Group on Bereavement Care, we need to reference the need to align the palliative care programme in Lothian to this more closely.

Respite care (availability, and access to respite care in a place that can deliver appropriate care) needs to be flagged as a key challenge, and issue that requires further attention.

A number of responses highlighted the need for a financial plan to be in place to support delivery and to deal with the financial challenges arising from the plan

A number of responses referred to care of people with mental health problems. Many of these commented on the additional challenges inherent in caring for people with dementia. Others referred to the specific needs of people with learning disability. One considered response outlined the specific needs of those with severe and enduring mental illness living in the community, and the lack of reference to this in the draft strategy. The need outlined is to ensure that access to high quality palliative care is available, including being able to ascertain and support preferences in relation to place of care and death, and access informed specialist palliative care service advice. Considering these responses there is perhaps a need to pull together a specific section of the strategy covering mental health and palliative care.

Question 10 Specific objectives - In the objectives listed, have we identified all key areas? Are these adequately addressed? Most responses to this question agreed that the objectives as stated covered all key areas. Other comments reinforced the need to develop and refine our key challenges by considering the areas highlighted in response to consultation question 9. Question 11 Is there anything else about the strategy aims, approach or objectives that you would like to comment on? Responses principally highlighted the following:

The need to retain and develop a distinct element of the plan, and its implementation, relating to paediatric palliative care. In particular to acknowledge that a children hospice is available as a national resource, how we might improve joint (clinical) working with the children’s hospice, how we might improve transitional care for adolescents, and the need to further explore provision of improved 24/7 community based care for children cared for at home.

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A number of responses highlighted the need to showcase more the often excellent palliative and end of life care already being provided in NHS Continuing Care wards. These responses described also the need to ensure that linkages between hospices and specialist palliative care services are further developed.

A number of responses again highlighted the need to ensure carers support is adequately addressed.

A number of responses referred to the need for adequate resources to support implementation. Some of these responses questioned the feasibility of full implementation of the aims and objectives of the plan without adequate support. Considering this, it is perhaps the case that the extent of work already being delivered to change and improve services (via the Lothian Living and Dying Well Delivery Plan, and within the broader strategic programme for palliative care) is not fully visible to many responders. This would provide re-assurance that many of the improvements described in the plan can be delivered and often within existing resources (including the support and resource being gained nationally via our participation in the national Living and Dying Well programme). It is clearly highlighted however that objectives such as training, systematically supporting care homes, and developing community care end of life pathways (via schemes such as the Liverpool Care Pathway) will require time and resource to fully implement.

Question 12 This strategy outlines a number of areas for improvement and development. Is there anything we are currently doing that we could stop doing? There was no specific theme in these responses other than better partnership working (NHS, Local Authority, voluntary sector and family and carers) may reduce duplication and improve the efficiency and effectiveness of what we are currently delivering. Question 13 Changing attitudes to death and dying may be important if we wish to get better at ‘planning a good death’. How can we encourage people/the public to have conversations about death and dying? The principal means of encouraging conversations about death and dying were outlined as:

Use media of all forms Involve key public figures Develop ways to discuss with school children (before death becomes too

personal an issue or taboo) Build information into educational programmes Information leaflets available in a variety locations – surgeries, clinics, social work

centres, day centres etc Make information available in accessible formats Link information provision to legal processes such as making a will, power of

attorney, and guardianship etc. Make Advance Care Planning part of routine care planning Clinical review / after death analysis Link with carer organisations Use the Children’s hospice expertise

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Use the opportunity afforded by the forthcoming debate on assisted suicide in Scotland, and also ensure that this does not restrict a wider discussion of palliative and end of life care.

It was also clear from reviewing responses to this consultation that the consultation exercise itself had been a vehicle to support conversation about death and dying. Feedback from one of the group sessions included: Keep having sessions like today where we can talk about death and dying. And from individual respondents: Respondent: Congratulations on making the summary guide to Lothian's Palliative Care Strategy 2010 - 2015 available in libraries for public consultation. Respondent: This is a welcome document and will enable staff, patients, carers alike to think more proactively about a "good death", not just for those specialities where this has been a reasonably "positive" experience, thus far for many (Cancer / Hospice) Services… The summary guide will be useful for many staff and some of the guiding principles will be of benefit as we further develop policy and procedures…

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2. Consultation Methodology Background of the Palliative Care Consultation Process The draft strategy was presented to the NHS Lothian Board in September 2009 and at this meeting the intention to consult on the draft strategy with professionals and the general public was stated. The aim of the consultation was to ensure that staff, patients, carers, the general public and the voluntary sector had the opportunity to engage in the further consideration and development of the Lothian palliative care strategy and to begin to open up wider discussion around the delivery of palliative and end of life care in Lothian To support the consultation, 13 questions were identified (as outlined earlier in this report). These questions relate to the principle areas and objectives within the strategy. In addition to this respondents were invited to provide any general comments on any issues they thought particularly relevant. Invites to respond to this consultation were circulated across a wide range of networks, across Lothian, Scotland and the UK. Materials to Support the Consultation A number of materials were prepared to support the consultation process, these include:

4500 copies of a summary version of Living and Dying Well in Lothian, this was written in plain English and summarised the key points of the strategy. This included 13 consultation questions. The summary version also contained contact details (phone, postal address, website and email) where people could get more information.

An easy read version was prepared with support from the Learning Disabilities services for people with cognitive impairments.

Information was placed online including the full version of the strategy and all the supplementary reports prepared as the strategy was developed. A link to the page was placed on the NHS Lothian homepage of the website. If people wanted hard copies of any of the documents, these were posted out on request.

Posters were printed which provided information on the consultation, how to get more information and the deadline for consultation responses.

How the Consultation Exercise was Completed The process of engagement for the public consultation was developed with input from a range of stakeholders including the NHS Lothian Communications team and in conjunction with the Scottish Health Council (SHC). The advice and support from the SHC was sought from an early stage and their suggestions have been incorporated into the consultation exercise. There were two key strands to the consultation:

1. Consultation with health and social care professionals involved in the delivery of services to patients, carers and families

2. Consultation with the general public 1. Consultation with Health and Social Care Professionals Consultation with health and social care professionals was supported by the following:

An article on the consultation was placed in Connections- NHS Lothian’s staff newspaper, this detailed the key aims and objectives of the strategy and where further information was available.

This was followed up by an article in the NHS Lothian Team Brief.

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The strategy was presented at a range of NHS Lothian Board Committees including, the Service Redesign Committee, the Healthcare Governance and Risk Management Committee, the Lothian Partnership Forum, the Area Clinical Forum and the NHS Lothian Equality and Diversity Steering Group.

Hospices presented the strategy to their staff and gave them opportunity to discuss the strategy.

Each of the Lothian CH(C)Ps has a Palliative and End of Life Care Group. These all discussed and responded formally to the palliative care strategy.

The strategy was presented to the University Hospital Division Senior Management Team (SMT).

The Lothian Care Homes Palliative Care Reference Group discussed and responded to the strategy.

An event was held to enable community nurses to discuss the strategy and respond to the consultation.

In addition the copies of the strategy with information of how to respond were circulated to a wide range of professional groups, for example, various Managed Clinical Networks, senior nursing and medical staff and the Lothian Directors of Social Work.

The consultation process follows on from the work completed during the development of the draft strategy. A variety of stakeholder’s views were gathered and considered. Different methods were used to collate these including:

A professional stakeholder event was held in January 2009- bringing together approximately 100 people working across a range of professions in health and social care services. Collectively they identified a range of challenges as well as potential solutions to improve the delivery of palliative care in Lothian.

In March 2009 a Carers Event was held in partnership with VOCAL -a local carer’s organisation. The findings of this event were analysed thematically and shaped the development of the strategy. A significant challenge highlighted by participants at this event is that carers don’t always recognise that the patient is in receipt of palliative care.

A comprehensive review of needs assessments and literature relating to palliative care was undertaken. This was analysed using a number of formats, including ‘what patients, carers and professionals have told us’.

2. Consultation with the General Public The palliative care strategy steering group recognised that it is good practice to reach out to groups who may not wish or be able to respond to the consultation in writing, but whose views are important as they reflect the diversity of the population in Lothian. Therefore the consultation process with the general public was managed to ensure that groups identified as hard to reach or with specific issues in relation to the delivery of palliative and end of life care were targeted and actively assisted to respond to the consultation. In addition a more general approach was taken, aiming to raise awareness of the strategy and inviting a general response. This process is outlined in more detail below:

A range of harder to reach groups were identified and contacted with information about the strategy. The steering group offered to attend meetings to formally present members with information about the strategy and collate feedback. The following groups responded to this offer: - Nari Kallyan Shangho- supporting women from the South East Asian

communities (Pakistan, India and Bangladesh and from Hindu and Muslim communities)

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- South Edinburgh Partnership - Pilton Community Health Project - East Lothian Community Care Forum - Edinburgh Equalities Network (groups and communities of interest across the

“equalities domains” of age, caring role, disability, ethnicity, faith/belief, gender/gender identity, and/or sexual orientation).

At all meetings notes were taken and collated into the response template. All comments were then fed into the analysis.

The strategy also addresses paediatric palliative care and was therefore included within the scope of the consultation. It was recognised a different approach was required to gather the views of those who had used paediatric palliative care services. Two parents and guardians were identified who had used or are using paediatric palliative care services and individual face to face meetings were arranged.

The summary document with a covering letter was distributed to Community Councils, voluntary organisations, those supporting the interests of minority ethnic communities, older people, young people, disability, carers groups and disease specific groups. The letter included information about the development of the draft strategy and invited people to contact NHS Lothian if they wanted additional copies of the summary of the strategy or more information.

All the Lothian Public Partnership Fora (PPFs) were informed that the strategy was out for consultation and invited to formally respond to the consultation.

Copies of the summary booklet were also sent to all public libraries across Lothian enabling members of the public to pick up copies of consultation.

Newsletters prepared by local umbrella groups of the voluntary sector were asked to highlight the consultation- again raising general awareness of the consultation.

Healthlink- NHS Lothian’s public newspaper included in the winter 2009 edition an article about the draft strategy

and how members of the public could respond to the consultation. Posters about the draft strategy were widely circulated.

The deadline for the consultation responses was Friday 5th February. However there is commitment to ensuring the process of engagement continues. Following the end of the palliative care consultation, meetings have been held with the North East Edinburgh Carers Action Group (NEECAG) and the Edinburgh Interfaith Association where the strategy and the initial findings of the consultation have been discussed. It is expected that in the future, further meetings will be held with a range of participants as various aspects of the strategy are taken forward. Analysis of the Responses The consultation process resulted in the receipt of 90 responses from a diverse range of respondents. These responses have been analysed looking at the 13 questions that were developed as part of the consultation process. Some respondents asked us to keep their identities and responses confidential. Appendix one details (where permission had been granted) where responses have been received from. Evaluation and Future Work All participants at the consultation events were asked to complete an evaluation questionnaire and a monitoring form. Initial analysis found that 99% of respondents stated that they thought the aims of the meeting were clear, that they understood what

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they were being told and asked, that any written information was understandable and that they were able to say what they wanted to say. As part of the consultation the draft strategy was presented to the NHS Lothian Equality and Diversity Committee. The consultation process was discussed and the committee recommended that this was evaluated. Subsequent to this a commitment has been made to evaluate the consultation exercise and to report on the findings of the evaluation to share experience of the consultation with others. All those who participated in the consultation will receive information on the outcome of the strategy consultation and how implementation of the strategy will be taken forward.

3. Change and Development of the Strategy Based on Feedback from Consultation

Area for development based on consultation feedback Action taken Supporting Choice: Preferred Place of Care, and Death In response to feedback on choice of place of death, our finalised strategy will retain its focus on improvement and support for deaths in residential settings (since more integrated work with care homes, and community hospitals was supported, as well as support for maintaining people at home for as long as possible). The final strategy will however also be clear that, based on feedback from public consultation, place of death alone is not regarded as the single most important factor indicating the quality of palliative and end of life care. Much of the feedback gained from consultation illustrated that for example supporting people for as long as possible in their place of residence was the key element, whilst a final episode (and death) in acute hospital for some may still be necessary and appropriate and should not be regarded as a ‘failure’. In relation to supporting choice therefore the goals of implementation will be to support action to:

Identify people who would benefit from palliative care, and to develop care plans with people which include establishing preferred place of care and preferred place of death

Maximise the time spent in people’s preferred place of care (home, care home, and community hospital)

Minimise emergency admissions where these could be avoided by good anticipatory care planning

Support realistic choice of place of death (taking into account a holistic assessment of patient, family and carer needs). Responders to the consultation have made it clear to us that whilst more people would to prefer to die where they live, rather than in an acute hospital setting, choices must be considered against a realistic assessment of circumstances, support, individual needs, and therefore feasibility of delivery.

Text describing our vision and aims has been adapted. Key challenge number 4 has been updated to be in line with these changes. In particular the goals of implementation associated with supporting choice have been outlined in the final strategy executive summary and the aims, to ensure this is clear.

This approach fits with our overall objective of quality improvement in all settings, including both residential and acute hospital settings. It should also help to avoid the potential misconception that the strategy is simply about ‘more deaths at home’, and that place of death is the only measure of expected shifts in the balance of care. Indicators of Shifting the Balance of Palliative and End of Life Care Given the feedback from consultation, the overall goals outlined in the draft strategy (as below) remain valid:

Increasing the proportion of deaths each year in domiciliary and care home settings Further supporting and improving the quality of palliative and end of life care in our community

hospitals. Continuing to decrease the proportion of deaths in acute hospital settings

Consultation feedback has described to us that some people may not be able to achieve their preference to die where they live despite good planning and support (for example where family and carers may be too distressed or unable to manage a home death, or where no family or carer support exists, etc). Consultation feedback has therefore indicated that monitoring changes in place of death alone will not adequately measure progress or quality improvement. This complicates both goal setting and monitoring progress. Therefore to assist in monitoring strategy implementation, as well as place of death indicators, additional measures of the process of care should be developed to capture, for example, the number of acute hospital admissions in the final year of life (with aim to reduce associated occupied bed days). It is recommended therefore that implementation of the strategy monitors progress against the direction of travel outlined below, and for deaths in residential settings (domiciliary, care homes) the number of acute hospital admissions in the final year of life should be monitored, with the aim of reducing the number of associated occupied bed days, compared with a 2008 baseline for these cohorts. Taken together, these figures may provide a proxy measure of whole-system performance. The figures outlined in the draft strategy (as below) should be retained as indicators of the expected direction of travel, but because of the issues outlined above should not be described as specific aims.

Updated the executive summary, main body of strategy text, and appendix 6 to reflect these changes.

The figures stated were:

to decrease the proportion of deaths in acute hospitals in Lothian (the Royal Infirmary Edinburgh, the Western General Hospital, St John’s Hospital and the Royal Hospital for Sick Children) from a 2008 baseline of 42.3%, to a level of 38% by the end of 2015. to increase the proportion of deaths occurring in community settings, including in people’s own homes and care homes, from 34.4% in the baseline year of 2008 to 38.8% in 2015.

Carers Support for carers as partners in care needs to be more strongly recognised throughout the plan and in the key challenges

Changed key challenge 4 to read: To provide high quality integrated palliative care to more people, and to maximise the time spent in their preferred place of care, recognising and supporting carers as partners in care Other sections such as respite care, and carer needs outlined in appendices to the full document also refer.

Bereavement care Bereavement care – to be referenced in the key challenges (to better reflect the new concept of palliative care that underpins this strategy). Additionally, in anticipation of the guidance expected later this year from the Scottish Government Working Group on Bereavement Care, we need to reference the need to align the palliative care programme in Lothian to this more closely.

New objective added recognising the importance of bereavement care, and the need to work with bereavement services as part of implementation of this strategy, and as their plans develop in line with emerging policy.

Respite care Respite care (availability, and the how this might better support maintaining people in their preferred place of care for as long as possible) was seen as an issue that required further consideration.

Added text to flag the need to further consider availability specifically in relation to supporting

people in their preferred place of care for as long as possible.

Strategic financial plan A number of responses highlighted the need for a financial plan to be in place to support delivery and to deal with the financial challenges arising from the plan

Being developed March and April 2010.

Mental health, learning disabilities and palliative care A number of responses referred to care of people with mental health problems. Many of these commented on the additional challenges inherent in caring for people with dementia. Others referred to the specific needs of people with learning disability. One considered response outlined the specific needs of those with severe and enduring mental illness living in the community, and the lack of reference to this in the draft strategy. Many other responses referred to those with mental health problems more generally, also. The need outlined is to ensure that access to high quality palliative care is available, including being able to ascertain and support preferences in relation to place of care and death, and access informed specialist palliative care service advice. Considering these responses there is a need to pull together a specific section of the strategy covering all aspects of mental health, learning disabilities, dementia and palliative care.

Dementia, Learning Disabilities and Severe and enduring mental illness now referred to in one single section of the final strategy. - Dementia text per draft strategy. - Learning disability relates to

information support needs and needs recognised in education programmes.

- Severe and enduring mental illness text relates to social exclusion and disadvantage often present and the need for liaison between generalist staff, mental health staff and specialist palliative care staff to support palliative and end of life assessment and care planning.

Children’s palliative care The need to retain and develop a distinct element of the plan, and its implementation, relating to paediatric palliative care. In particular to acknowledge that a children hospice is available as a national resource, how we might improve joint (clinical) working with the children’s hospice, how we might improve transitional care for adolescents, and the need to further explore provision of improved 24/7 community based care for children cared for at home.

Paediatric section retained. Other actions particularly noted by consultation have been noted in the final strategy by updating the paediatric section and cross referencing the particular actions flagged with the Paediatric section

of the Lothian Living & Dying Well Delivery Plan to ensure actions are taken forward within this framework.

Diversity A number of responses highlighted the needs of a range of diverse communities and different approaches to palliative and end of life care. In response to this it is recommended that the section titled ‘Minority Ethnic Health Needs’ in the draft strategy is renamed ‘Responding to Diverse Needs’, and this section makes reference to all aspects of the wider plan in relation to diversity (ethnicity, faith, culture, geography, disability, age, socio-economic deprivation). Based on consultation feedback there is a need to develop a resource pack giving information on different faith, cultural and community customs in relation to death and dying. Also, geographical inequity in access to hospice services needs to be considered in community service redesign. Information on accessing services (for those with sensory impairment, learning disabilities or cognitive impairment) needs to be further developed. In developing children’s palliative care issues in relation to transitional care for adolescents (age appropriate care) need to be explored. The need to consider the impact that changes to community support services have on the most economically deprived is also an important factor in future work on community service redesign and development.

Updated section entitled ‘Responding to Diverse Needs’ inserted into the final strategy. This section replaces the previous section entitled ‘Minority Ethnic Health Needs’, encompassing both that text and additional text based on feedback gained on other strands of diversity.

Organ donation Following discussion at the NHS Lothian Organ Donation Committee the following text was agreed for addition to the plan: Organ Donation The Lothian Palliative Care MCN supports the work of the NHS Lothian Organ Donation Committee in implementing the recommendations of the UK Organ Donation Taskforce. The target of making organ and tissue donation part of every end-of-life discussion will be addressed in line with the forthcoming recommendations of the National Living and Dying Well Groups. The initial focus of this work will be in the area of engaging with stakeholders to develop a health promoting palliative care approach so that organ and tissue donation can be addressed as part of initiatives to encourage a public discourse about death and dying.

Text inserted as an objective in the finalised strategy. Also, added a reference in the Education section of the strategy document.

Making a decision to donate organs or tissue that can be used to help others can be a very positive and reassuring part of advance care planning. For patients with life-limiting disease solid organ donation is seldom possible, however the more realistic possibility of tissue (cornea, tendon, heart valve etc) donation is rarely explored. Through the development and support of advance care planning initiatives Lothian Palliative Care MCN will seek to improve confidence and competence in discussing end of life issues which would include organ and tissue donation. Also to reference it in the Education section in the last bullet point “Advanced Care Planning, which includes DNAR decision making processes and opportunities for organ and tissue donation”

Appendices Appendix 1: Respondents to the Palliative Care Strategy Key BC: Board Committee CON: Consultation Event FR: Formal Response GEC: General Email Comments GTC: General Telephone Comments

Reference Response Confidential?

Who Address

BC 1 No NHS Lothian Organ Donation Committee

NHS Lothian, 148 Pleasance, Edinburgh, EH8 9RS

BC 2 No NHS Lothian Service Redesign Committee


BC 3 No NHS Lothian Healthcare Governance and Risk Management Committee


BC 4 No NHS Lothian Partnership Forum


BC 5 No NHS Lothian Acute Senior Management Team


BC 6 No NHS Lothian Area Clinical Forum


BC 7 No NHS Lothian Equality and Diversity Committee


CON 1 No East Lothian Community Carers Forum

East Lothian Community Care Forum Tynepark House Poldrate Haddington EH41 4DA

CON 2 No South Edinburgh Partnership

Services for Communities 13 Newtoft Street EDINBURGH EH17 8RG

CON 3 No Nari Kallyan Shangho Nari Kallyan Shangho Darroch Annexe 7 Gillespie Street Edinburgh EH3 9NH

CON 4 No Pilton Community Health Project

73 Boswall Parkway Edinburgh EH5 2PW

CON 5 No Edinburgh Equalities Network

Edinburgh Equalities Network Department of Corporate Services Business Centre 2/1 4 East Market Street Edinburgh EH8 8BG

CON 6 Yes CON 7 Yes FR 1 Yes FR 2 No Eric Foggitt Adult Speech and Language Therapist,

Roodlands Hospital, Haddington East Lothian EH41 3PF

FR 3 Yes FR 4 Yes FR 5 No Scottish Council on

Deafness Scottish Council on Deafness, Central Chambers Suite 62, 93 Hope Street, Glasgow G2 6LD

FR 6 No Lothian Palliative Care Care Home Providers Reference Group


FR 7 No NHS Lothian Pharmacy Service


FR 8 No Janice MacKenzie- Nursing Manager RHSC

Royal Hospital for Sick Children, 9 Sciennes Road Edinburgh EH9 1LF

FR 9 Yes FR 10 No Merchiston Community

Council [email protected] or [email protected]

FR 11 Yes West Lothian Council- Social Policy Department

West Lothian Council West Lothian Civic Centre Howden South Road Livingston EH54 6FF

FR 12 No Department of Clinical Psychology, Edinburgh Cancer Centre,

Department of Clinical Psychology, Edinburgh Cancer Centre, Western General Hospital, Crewe Road, Edinburgh, EH4 2XU

FR 13 No Lothian Diabetes MCN Metabolic Unit, Western General Hospital Crewe Road Edinburgh EH4 2XU

FR 14 Yes City of Edinburgh Council, Home Care Reablement Service

Home Care Reablement Coordinator Home Care and Support Health and Social Care Westfield House 5 Kirk Loan Edinburgh EH12 7HD

FR 15 Yes East Lothian Council- Adult Social Care Services

East Lothian Council, John Muir House Haddington East Lothian EH41 3HA

FR 16 No ELCAP ELCAP, Woodbine Cottage, West Loan, Prestonpans, East Lothian, EH32 9WU

FR 17 No Lothian Hepatitis C MCN NHS Lothian, 148 Pleasance, Edinburgh, EH8 9RS

FR 18 No Waverley Care 3 Mansfield Place, Edinburgh EH3 6NB

FR 19 No Edinburgh Community Health Partnership Palliative Care Partnership Group

Edinburgh CHP St Roque Astley Ainslie Hospital Grange Loan Edinburgh EH9 2HL

FR 20 No The Family Council The Faimily Council Royal Hospital Sick Children, 1 Rillbank Terrace, Sciennes, Edinburgh, EH9 1LL

FR 21 No Children's Hospice Association, Scotland

Children’s Hospice Association Scotland, Canal Court, 42 Craiglockart Avenue, Edinburgh EH14 1LT

FR 22 No Children’s Ward, St Johns Hospital, Livingston

Children’s Ward, St John's Hospital at Howden Howden Road West Howden Livingston West Lothian EH54 6PP

FR 23 No Lothian Centre for Inclusive Living (LCIL)

Lothian Centre for Inclusive Living, Norton Park, 57 Albion Road, Edinburgh, EH7 5QY

FR 24 No Cllr Norman Hampshire – East Lothian Council

Town House, 56 High Street, Haddington EH41 3EN

FR 25 Yes RNID RNID Scotland Empire House 131 West Nile Street Glasgow G1 2RX

FR 26 No The Care Commission The Care Commission Compass House, 11 Riverside Drive, Dundee, DD1 4NY

FR 27 No East and Midlothian CHP Palliative Care Partnership

Edinburgh Palliative Care Partnership Group Community Nursing Office Roodlands Hospital Haddington East Lothian EH41 3PF

FR 28 No Palliative Care Link Nurses on behalf of Edinburgh Community Health Partnership Older Peoples Services

Palliative Care Link Nurses Older Peoples Services Edinburgh CHP St Roque Astley Ainslie Hospital Grange Loan Edinburgh EH9 2HL

FR 29 Yes FR 30 Yes FR 31 No Katrina Marshall-

Paediatric Palliative Care Nurse

Royal Hospital for Sick Children, 9 Sciennes Road Edinburgh EH9 1LF

FR 32 No North Berwick Community Council

C/o East Lothian Council Office, 2 Quality Street, North Berwick EH39 4HW

FR 33 No FR 34 No FR 35 No FR 36 No Trinity Community

Council 19 Denham Green Terrace Edinburgh EH5 3PE

FR 37 No Juniper Green and Baberton Mains Community Council

2 Belmont Road, Juniper Green Edinburgh EH14 5DX

FR 38 No MS Society Scotland Ratho New Bridge EH28 8PP

FR 39 Yes FR 40 No FR 41 Yes FR 42 Yes FR 43 No FR 44 No Musselburgh & Inveresk

Community Council 168 New Street, Musselburgh

FR 45 No Dr Guy Holloway- Consultant in Old Age Psychiatry

Care of the Elderly Jardine Clinic Royal Edinburgh Hospital Morningside Terrace Edinburgh EH10 5HF

FR 46 No South Edinburgh Health Forum

40 Baberton Mains Drive Edinburgh EH14 3BS

FR 47 No West Lothian CHCP Palliative Care Partnership

Bathgate Primary Care Centre Whitburn Road Bathgate EH48 2SS

GEC 1 Yes GEC 2 Yes GEC 3 Yes

GEC 4 Yes GEC 5 Yes GEC 6 Yes GEC 7 Yes GEC 8 Yes GEC 9 Yes GEC 10 Yes GEC 11 Yes GEC 12 Yes GEC 13 Yes GEC 14 Yes GEC 15 Yes GEC 16 Yes GEC 17a Yes GEC 17b Yes GEC 18 Yes GEC 19 Yes GEC 20 Yes GEC 21 Yes GEC 22 Yes GEC 23 Yes GEC 24 Yes GEC 25 Yes GEC 26 Yes GEC 27 Yes GTC 1 Yes

Documents

Findings of the Public Consultation on Living and Dying ......Advance care planning (to gain information on wishes, and in particular early care planning ahead of cognitive deteroiration)