Appendix 3

Cross Party Group in the Scottish Parliament on Palliative Care – 7 January 2009

Notes from discussion led by Roseanna Cunningham MSP

Please note that this is a summary of key points raised and not a verbatim record.

Proposed Palliative Care (Scotland) Bill

Roseanna Cunningham MSP for Perth, outlined her proposed Palliative Care (Scotland) Bill. She considered that the proposed Bill embraced everything in Living and Dying Well: a national action plan for palliative and end of life care in Scotland(L&DW) but went one step further. It sought to enshrine in legislation a prima facie right to palliative care. While supporting (L&DW), she felt thatplans did not always necessarily deliver proposed services and that if the right to palliative care services was established then all else would follow. A similar Private Members Bill had been introduced by Baroness Illora Finlay at Westminster and had been through the House of Lords.

Ms Cunningham emphasised that at this stage of the process there was no Bill, only a proposal – the signatures of 18 MSPs was required before it could proceed, and a Bill would be drafted only after an analysis of consultation responses. A draft Bill would then go to the Business Bureau for consideration and the timescale for this could take several months. The proposed Bill was relatively straightforward with a set of key consultation questions. A list of consultees was included in the proposed Bill. The closing date for consultation responses was 28 February 2009 but any late responses could be considered at Ms Cunningham’s discretion.

The Convener informed the group that the Cross Party Group in the Scottish Parliament on Palliative Care was one of the consultees listed in the proposed Bill and that this meeting was the start of the consultation process. He then invited questions and comments.

Dr Richard Simpson MSP stated that he had fundamental concerns about the Bill, namely:

  • Why should there be a specific legal right to palliative care as opposed to other areas of health care?
  • If this became a primary statutory requirement, what would GPs and DNs need to give up in order tofulfil their duties? In his view such legislation was unworkable.
  • The implementation of L&DW was about to commence – it was not appropriate to adding the ‘one step further’ at this early stage. Perhaps it would be worth having the debate at a future stage when the L&DW process had been completed?
  • The debate on what should be statutory could distract from L&DW. At what point during an illness would a patient have a statutory right to palliative care services?

Ms Cunningham replied that there would be a needs based assessment for each patient but not legislation for every case. The question was ‘Why not wait?’ The timescales for a members Bill meant that this proposal could not become law until 2010/2011 and she felt that waiting for 2/3 years for the outcomes of L&DW would actually delay the proposed Bill for a further 3/4 years. In addition, the fact that there would be a new Scottish Parliament in 2011 had to be considered.

To the question of legislating specifically for palliative care, Ms Cunningham pointed out that the Scottish Parliament had already legislated on Personal Care for the Elderly. If there was no right to palliative care then there were concerns regarding other issues, such as the care of people who were dying and also the euthanasia debate.

Jacquie Malcolm added that there were a number of disease trajectories and everyone at some point would be affected by end of life issues. Palliative care was the common denominator to them all. She reminded members that the aim of the proposed Bill was to make end of life better for Scotland.

Dr Simpson pointed out that everyone already had a general right to health care and that included palliative care. Terminal care did not apply to everyone for example, someone who had had a sudden death. He was still concerned that end of life care would become statutory but care for other conditions would not.

Ms Cunningham replied that NHS staff constantly made decisions around prioritisation.

Dr Simpson reminded members that there were already guidelines for palliative care provision. Patients did not need the right to that provision.

Francis Edwards asked if the proposed Bill would apply to children and young people.

Ms Cunningham stated that the proposed Bill would apply to everyone. She pointed out that the final year of life regardless of age was the most expensive to the NHS.

Dr Paterson informed Ms Cunningham that the RCGP had been omitted from the list of consultees.

Ms Cunningham acknowledged this and apologised for the omission.

Dr Paterson went on to discuss the practicalities of prognostication. Defining when someone would die was really difficult and clinicians were constantly confounded. It was simply not possible to decide where someone was on the disease trajectory. He queried how he and his colleagues would actually do this. Deciding when someone was eligible for palliative care would be a breathtaking responsibility for GPs, with less emphasis on clinical judgement and more on keeping within the law.Currently the issuing of a DS1500 benefits application form was the best example of making such a decision, and retrospective statistical evidence had recently shown the high level of inaccuracy involved.

Ms Cunningham replied that there should always be needs based assessments which offered appropriate palliative care for different states of the patient’s journey. It was a gradual process. She thought it was breathtaking that the statutory right to palliative care did not exist.

Dr Paterson referred to the fact that help with bathing might be available for someone with COPD, but would not be provided for someone who was frail and elderly but did not have such a specific diagnosis. Frail elderly people also needed palliative care - ie good quality services and a good death - not just those diagnosed with certain conditions.

Jacquie Malcolm agreed that the frail and elderly needed access to palliative care without diagnosis ie on demand.

Irene McKie felt that semantics were important - there was a difference between people’s preferences and needs based assessment. People might want a degree of hospice care when in fact they did not need it. There would never be a blank cheque book to provide services, and the public should not be misled about this. There were also the semantics of defining / measuring good palliative care. Patients had a choice when to accept palliative care – for example for patients to accept hospice palliative care probably implied their acceptance of dying. There was a risk in the use of performance indicators to define and measure quality – for example the number of emergency hospital admissions could be reduced by ceasing to support and facilitate people dying at home.

It was Ms McKie’s view that everyone’s energies at the moment should be concentrated on taking forward L&DW.

Ms Cunningham replied that patients would be assessed on their needs and could not demand palliative care if they did not need it.

Ms McKie asked who would define their needs.

Ms Cunningham stated that clinicians defined their needs and in general patients accepted their assessment. Patients had a right to care and also a right to refuse it.

Irene McKie asked if there would be indicators of the stage at which palliative care should be made available, since it was important that discussions around advance care planning took place.

Jacquie Malcolm asked how we could measure a good death. How could it be put into words? What would need to be recorded?

Professor Welsh asked:

  • if there were any figures on complaints regarding patients not receiving appropriate palliative care.
  • what would the implications of legal requirements be on Health Boards and other specialists?
  • would there be a cascade of other proposed bills coming forward for example for neo-natal care, epilepsy, diabetes, disability etc?
  • were there any differences from Illora Finlay’s Bill?

Ms Cunninghamexplained:

  • that Illora Finlay’s Bill had been a draft Bill from the outset whilst in Scotland it was a proposal to produce a draft Bill. The process of consultation would inform the drafting of the Bill
  • yes, there might be a cascade of Bills – so what? There would be the same arguments as free personal care for the elderly, free bus passes etc.
  • complaints from patients were probably not truly indicative - there was probably a tiny number who would take their complaint to the stage of the Ombudsman.

Kate Lennon felt that there was no learning yet from L&DW and that the Bill should be delayed until the short life working groups made their recommendations in 2010.

Ms Cunningham replied that therewere always reasons to delay, and delay was built into the process. The Government, the Health Committee or the Business Bureau could each choose to delay. If the Bill was withdrawn it could not be taken forward until after the next election then the process would have to start all over again.

Kate Lennon responded that the timing of the Bill was wrong. It would be a huge distraction from the existing passion and enthusiasm for working towards the aims and success of L&DW, which she believed would put in place the missing elements of health and social care systems.

Ms Cunningham replied that this was an issue for debate within the palliative care community.

Dr Bill O’Neill stated that there was a risk of destroying both the proposed palliative care Bill and MSP Margo MacDonald’s proposed end of life choices Bill if both proceeded together. It would be worth teasing this out and discussing the timing of the palliative care Bill. There needed to be a major ethical debate in society around the end of life choices proposed Bill and palliative care would be a fundamental part of that debate. He felt that Ms Cunningham’s proposed Bill would be seen as counteracting Ms MacDonald’s Bill, and that this would cloud judgement and detract from a public ethical debate.

Ms Cunningham replied that she had no control over the process and had had no prior knowledge of the other Bill. Ms MacDonald also needed 18 signatures to take her Bill forward.

Maria McGill agreed with Dr O’Neill. Now was not the time to focus on two debates concurrently. The palliative care community had been awaiting the launch of Bill on physician assisted suicide and total energies should now be focussed on this and on the implementation of L&DW. She felt it was not possible to address Ms Cunningham’s proposal at the same time.

Ms Cunningham stated that not all of the palliative care community was against her proposed Bill– differing views had been expressed. If Ms MacDonald’s Bill was passed then people would have the right to die but not to palliative care.

Dr Paterson stated that the general accepted view in palliative care was opposition to PAS but he felt that people should have the individual right to decide and not be judged for their decision.

John Deighan felt that it was essential to open up the debate and let people know what palliative care could do for people and show what a difference this level of care made to patients at the end of their lives.

Ms Cunningham agreed that there was a general lack of awareness of the capacity of palliative care to deal with what people fear. She felt that the apparent support for PAS could be seen as an expression of fear and ignorance.

The Convener stated that the Cross Party Group had the experience of dealing with the earlier Billproposed by Jeremy Purvis, and that the proposed end of life choices Bill should be addressed similarly by the weight of argument.

Sandra Campbell felt that if the philosophy of advanced care planning became the ‘norm’ it would raise awareness and allow earlier discussions about end of life and better access to services.

Professor Welsh stated that there was a moral right to have suffering relieved and NHS Boards did try to allocate resources to the best of their abilities to alleviate pain. New cost savings would be needed if there was a statutory right to palliative care. Where would they get the extra resources from? Would legal action be taken against Health Boards for not complying with the law regarding a right to palliative care or for legal costs of claims? If output rose to 200% would the current cost of £59m for providing specialist palliative care also double?

Ms Cunningham replied that she was looking for input regarding this matter - one of the questions in the consultation asked ‘What are the funding implications in this proposal?’ We also needed to think about the cost of not doing this. The Patients Rights Bill would also include some of these issues.

Helen Eadie MSP asked if there were any examples of a Bill such as the proposed palliative care Bill which had been introduced in Europe or further abroad.

Ms Cunningham was not aware of such but she had not carried out any international research. She understood that there was a current desire in England and Wales to take this forward and felt that Scotland needed to take it forward too.

The Convener thanked everyone for participating in the debate as it was very important to have dialogue on palliative care. He went on to explain that as the Cross Party Group in the Scottish Parliament on Palliative Care had been included in the list of organisations to be consulted by Roseanna Cunningham MSP on the Proposed Palliative Care (Scotland) Bill, he would be preparing a response on behalf of the Group. A wide range of views had been expressed at the meeting, and the views of members not present would also be sought.

In conclusion, the Group agreed that although there was no similar consultation list, it would contribute to MSP Margo MacDonald’s proposed end of life choices Bill also.

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