At the Close of Day: A Person-Centered Guidebook on End-of-Life Care

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Medical care during the final stages of life is often poorly coordinated and fails to take into account a patient's preferences, the UCLA researchers say. It also consumes the lion's share of health care dollars. A study found that 30 percent of Medicare resources are expended on the 5 percent of beneficiaries who die each year, and one-third of the costs in a patient's last year of life are amassed during the final month.

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  6. Yet research has shown that by instituting patient-centered care, costs in the last week of a patient's life can be reduced by up to 36 percent, and death, when it comes, is less likely to occur in an intensive care unit. One of the first things doctors do with these critically ill patients is determine their goals in a multidisciplinary environment, integrating a palliative care specialist at the outset.

    The physician and specialist see the patient on the same day to coordinate their care. Then a lot of very aggressive treatments can occur, due to inertia — patients are placed in an intensive care unit with oxygen and feeding tubes, and that's not always in line with their goals. The local authority may be able to provide some of this information itself, for example on welfare benefits, but where it cannot, it should help people access it.

    In many situations the role of the local authority will be to understand the circumstances of the person, understand their preferences and help them to access the tailored information and advice that they need to make well-informed decisions.

    A guide to end of life services

    Where a person lacks capacity, the authority must establish whether a person has a deputy of the Court of Protection or a person with Lasting Power of Attorney acting on their behalf. The local authority may consider the timing and context of any retirement decisions a person might be making and how this interacts with paying for their care and support.

    They should advise people of the ways to pay that others in similar circumstances would usually consider and the range of information and advice they should be considering to help make their decision. The local authority should take a role in joining up information and advice organisations locally so they can work collaboratively. The local authority should help information and advice providers and people to understand the role of each information and advice provider so people can access the right provider at the right time and not be sent round in circles.

    Local authorities should provide and publicise links and information on access to wider sources of information and advice, including those available nationally. Staff should have the knowledge to direct people to the financial information and advice they need, explaining the differences and potential benefits from seeking regulated or non-regulated financial advice.

    This should include both generic free and fee-based advice as well as services providing regulated forms of financial advice. Local authorities should make people aware which independent services may charge for the information and advice they provide. The local authority should ensure that they do this on a transparent basis. But this must not mean preventing them making their own choices and having control over their lives.

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    Everyone in the community should understand the importance of safeguarding and help keep people safe see chapter 14 on safeguarding. The information and advice provided must also cover who to tell when there are concerns about abuse or neglect and what will happen when such concerns are raised, including information on how the local Safeguarding Adults Board works. The local authority must make its own arrangements for dealing with complaints in accordance with the regulations.

    The information and advice service should be aligned with wider local authority strategies such as market shaping and commissioning, and with joint area strategies with health. The development of such plans should have regard to some common principles, including:. These national resources include guidance on principles for local information and advice strategies, case studies and practice examples.

    It must also co-operate more generally with each of its relevant partners taking account of their respective functions see chapter 15 on integration, cooperation and partnerships. The plan and the resulting service should adapt to changing needs and as a result of feedback and learning on what works best. The plan should be reviewed at agreed intervals. As a minimum, the process of developing a local plan should include:. Some of the factors and circumstances that local authorities should consider in doing this will often be identified in Joint Strategic Needs Assessments.

    These factors may include, but are not limited to:. This may be another statutory party, such as a GP or other NHS professional, other professionals, such as a solicitor or funeral director, care and support and housing providers, or a local group, user-led or charitable organisation, rather than the local authority itself.

    Local authorities should consider whether independent sources of information and advice may in some circumstances be more trusted — and therefore more effective — than the local authority itself see chapter 15, para. In particular, people should be signposted to appropriate independent information and advice when they are entering into a legal agreement with a local authority or other third party, such as a deferred payment agreement or committing to a top-up, or they wish to question, challenge or appeal a decision of the local authority or other statutory body.

    A local authority plan should therefore allow for the urgent provision of information and advice when necessary. Local authorities should work with health organisations and other partners to provide targeted information and advice to people in these critical situations and where people have long-term health conditions such as dementia see paragraph 3. Where appropriate, local authorities should signpost or refer people to national sources of information and advice where these are recognised as the most useful source.

    Examples might include:. Local authorities are encouraged to explore how they can make the most of cost-effective partnership opportunities with national providers. Referral or signposting to national sources should only occur where this is deemed to be in the best interests of the person and their circumstances and should not take the place of local services necessary for local authorities to discharge their duty under the Act.

    Local authorities will need to find the appropriate balance between local and national provision to cost-effectively meet their local need. The role of the local authority is critical to achieving this, both through the actions it takes to commission services directly to meet needs and the broader understanding of and interactions it undertakes with, the wider market, for the benefit of all local people and communities.

    This can be considered a duty to facilitate the market, in the sense of using a wide range of approaches to encourage and shape it, so that it meets the needs of all people in their area who need care and support, whether arranged or funded by the state, by the individual themselves, or in other ways.

    The ambition is for local authorities to influence and drive the pace of change for their whole market, leading to a sustainable and diverse range of care and support providers, continuously improving quality and choice, and delivering better, innovative and cost-effective outcomes that promote the wellbeing of people who need care and support. Local authorities have a vital role in ensuring that universal services are available to the whole population and where necessary, tailored to meet the needs of those with additional support requirements for example housing and leisure services.

    Market shaping and commissioning should aim to promote a market for care and support that should be seen as broadening, supplementing and supporting all these vital sources of care and support. Commissioning and market shaping are key levers for local authorities in designing and facilitating a healthy market of quality services. Market shaping activity should stimulate a diverse range of appropriate high quality services both in terms of the types of services and the types of provider organisation , and ensure the market as a whole remains vibrant and sustainable.

    It also includes working to ensure that those who purchase their own services are empowered to be effective consumers, for example by helping people who want to take direct payments make informed decisions about employing personal assistants. From the s onwards care services have been increasingly procured from the independent sector for example, not directly commissioned from and provided by an authority itself and covered all services that the authority arranged for people receiving state funding. Since when personalisation became a mainstream policy, commissioning has also covered activity to ensure that sufficient and appropriate services are available to meet the needs of growing numbers of people with personal budgets and direct payments.

    This has changed the commissioning role, as purchasing decisions have been increasingly devolved to individuals and families and direct procurement using block contracts has reduced.

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    Commissioning has come to be shaped more by the outcomes commissioners and individuals identify, rather than volumes of activity expected and commissioners have sought to facilitate flexible arrangements with providers for other forms of service to support choice and control, such as Individual Service Funds ISFs. Contract management is the process that then ensures that the services continue to be delivered to the agreed quality standards.

    Commissioning encompasses procurement but includes the wider set of strategic activities. Market shaping, commissioning, procurement and contracting are inter-related activities and the themes of this guidance will apply to each to a greater or lesser extent depending on the specific activity. Outcomes should be considered both in terms of outcomes for individuals and outcomes for groups of people and populations. Local authorities should consider the emerging revised Care Quality Commission standards for quality and any emerging national frameworks for defining outcomes. Local authorities should ensure that achieving better outcomes is central to its commissioning strategy and practices, and should be able to demonstrate that they are moving to contracting in a way that has an outcome basis at its heart.

    Facing terminal illness

    Local authorities should consider emerging best practice on outcomes-based commissioning. Moving to an outcomes-based approach therefore means changing the way services are bought: from units of provision to meet a specified need for example, hours of care provided to what is required to ensure specified measurable outcomes for people are met. Moving to an outcomes-based approach will need to recognise that some outcomes are challenging to assess and local authorities may wish to consider involving service providers when considering how service evaluations can be interpreted.

    Outcomes should be used as a principal measure for quality assurance of services. Whilst payments-by-outcomes may be theoretically the most appropriate approach for outcomes-based services, it is recognised that proxies for outcomes may be required to make the approach practical.

    What really matters at the end of life - BJ Miller

    Care logs documenting punctual assistance in meal preparation, in conjunction with positive feedback from the person receiving care about support received might be used as part of the basis of payment. It is also recognised that whilst these mechanisms are more commonplace in other types of commissioning, they are in their infancy for adult social care. Any move to payments by outcomes should be achieved such that smaller, specialist, voluntary sector and community-based providers are not excluded from markets or disadvantaged, because for example, they did not have appropriate IT systems.

    For example:. This guidance is intended to support peer review and self-assessment of local authority commissioning, and represents a practical approach that underpins the themes of this statutory guidance. This includes how the authority facilitates and commissions services and how it works with other local organisations to build community capital and make the most of the skills and resources already available in the area.

    In doing so, they must have regard to ensuring the continuous improvement of those services and encouraging a workforce which effectively underpins the market through:. The quality of services provided and the workforce providing them can have a significant effect on the wellbeing of people receiving care and support, and that of carers, and it is important to establish agreed understandable and clear criteria for quality and to ensure they are met.

    High quality services should enable people who need care and support, and carers, to meet appropriate personal outcome measures, for example, a domiciliary care service which provides care 2 days a week so that a carer who normally provides care can go to work, is not a quality service if it is not available on the specified days, or the care workers do not arrive in time to allow the carer to get to work on time.

    For example, a working age person should be able to choose care and support tailored for their situation, and not be faced with only a choice of facilities designed for older people, as this is unlikely to be appropriate to their situation, regardless of how high quality the facilities may be in their own contexts. Local authorities should consider care and support services for their appropriateness for people from different communities, cultures and beliefs.

    This is particularly important, for example, for young people with care and support needs and young carers transitioning to adulthood. For instance, many young people with learning disabilities leave full-time education at around this age and require new forms of care and support to live independently thereafter. Ensuring that services are made available to meet those needs is better for the quality of life of the young person in question. This could include things such as employment support, training, developing friendships or advice on housing options.

    It is equally important to think about ways of supporting carers at this time: some parent carers need extra support to juggle caring and paid work after their child leaves full time education. Similar issues can affect young carers. Local authorities must consider how to help foster, enhance and appropriately incentivise this vital workforce to underpin effective, high quality services. And have regard to funding available through grants to support the training of care workers in the independent sector:.

    Local authorities should consider encouraging the training and development of care worker staff to at least the standard of the emerging Care Certificate currently being developed by Health Education England, Skills for Care and Skills for Health. Remuneration must be at least sufficient to comply with the national minimum wage legislation for hourly pay or equivalent salary. This will include appropriate remuneration for any time spent travelling between appointments.

    Guidance on these issues can be found on the HMRC website. This should support and promote the wellbeing of people who receive care and support, and allow for the service provider ability to meet statutory obligations to pay at least the national minimum wage and provide effective training and development of staff. It should also allow retention of staff commensurate with delivering services to the agreed quality, and encourage innovation and improvement.

    Local authorities should have regard to guidance on minimum fee levels necessary to provide this assurance, taking account of the local economic environment. This assurance should understand that reasonable fee levels allow for a reasonable rate of return by independent providers that is sufficient to allow the overall pool of efficient providers to remain sustainable in the long term.