New South Wales. Palliative Care

Transcription

1 Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper. Help us provide informed input to the development of palliative care and end of life care in NSW. Palliative Care New South Wales Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 1

2 Table of Contents 1. Executive Summary 1 2. Introduction About Us Why do we need a Policy Statement? Health Promoting Palliative Care Methodology National Palliative Care Strategy NSW Palliative Care Framework NSW Role Delineation Framework National Guidance Document Purpose of this Discussion Paper How You Can Provide Feedback Finalising the Policy Statement 6 3. What is Palliative Care 7 Who can benefit from Palliative Care? 7 4. Why is Palliative Care Important? The Community patients, carers and families The Health System National Health Reform and Palliative Care National Palliative Care Standards National Health Reforms The NHHRC Final Report The Primary Care Strategy Australian Commission for Safety and Quality in Health Care COAG s Response to the National Reform Agenda The Productivity Commission Report Caring for Older Australians Moving Towards an Integrated System of End of Life Care Care that is Person and Carer Focused Making Informed Decisions about Care Flexible needs-based care Carers and Volunteers Culturally appropriate care A footnote on Extinction of Life Care that is Driven by Information Community Awareness Quality Improvement National Standards Research and leadership Care that is Organised for Quality and Safety Coordinated integrated care Workforce Resourcing and funding models 24 Endnotes 25 Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 2

3 1. Executive Summary Palliative Care NSW (PCNSW) is the peak body for palliative care in NSW, representing the interests of health care professionals, people with a life limiting illness and their carers and families. Our vision is for every person in NSW to have access to quality care at the end of their life. To achieve that vision, PCNSW aims to provide informed and evidence based input into the development of policy at the State and national levels. To that end, PCNSW intends to release a Policy Statement by mid-2012, canvassing the significant challenges facing the palliative care sector (and therefore the health sector), and possible solutions to those challenges. The purpose of this Discussion Paper is to provoke discussion and debate amongst our membership and other key stakeholders around the issues that should be included in our Policy Statement. Key features of the Discussion Paper, and our proposed approach to the Policy Statement, are: That PCNSW supports the construct of Health Promoting Palliative Care, recognising that it is possible to live and die in ways which are healthy and which minimise harm to individuals and groups (see section 2.3); That there remains a need to adopt consistent language around palliative care and the services it covers (see section 3). Failure to agree on definition of terms is itself an impediment to effective policy debate; That Palliative care is important to the community and to an efficient and effective health system (see section 4). There are therefore compelling reasons to ensure adequate access to palliative care services across NSW; That the proposed Policy Statement should be structured to reflect recent national and State reforms in the health sector (see section 5), drawing on: The National Palliative Care Standards; The National Health and Hospitals Reform Commission Final Report; The Australian Government s Building a 21st Century Primary Health Care Strategy; The Australian Commission for Safety and Quality in Health Care s national quality and safety framework; The Productivity Commission s Report Caring for Older Australians; and COAG s response to the national reform agenda. That, drawing on these reforms, there is a need to move towards an integrated system of end of life care (see section 6) that is: Person and carer focused; Driven by information; Organised for quality and safety. Throughout the Discussion Paper are numerous Discussion Points. These are designed to prompt discussion and to guide respondents on the type of issues we believe should be covered in our Policy Statement. In your submission you may focus on any or all of these points, or offer other ideas or views. Members and other stakeholders are encouraged to provide us with feedback in writing by Monday 16 January 2012 either by: Post: or Executive Officer, Palliative Care NSW PO Box 487, Strawberry Hills NSW 2012 info@palliativecarensw.org.au Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 1

4 2. Introduction 2.1 About Us Palliative Care NSW (PCNSW) is a small, not-for-profit, non-government organisation and is the peak body for palliative and end of life care in NSW. We represent the interests of health care professionals who work in Palliative Care (in either a specialist or primary care capacity), people with a life-limiting illness and their carers and families. Our vision is for every person in NSW to have access to quality care at the end of their life. Quality Palliative Care is realised when strong networks exist between specialist care providers, primary generalist and primary specialist and support care providers and the community, enabling them to work together to promote an optimal quality of care at the end of life. In achieving this vision, we: provide informed input into the development of policy; provide information and education to our members; provide a range of information services to patients, their families and/or carers; raise awareness of Palliative Care and the Association within the community the health sector, and Government; Promote excellence in the provision of Palliative and End of Life Care in NSW. Further information about what we do, and how we are governed, is available on our website at Why do we need a Policy Statement? To help achieve our aim of providing informed input to the development of Palliative Care policy, PCNSW proposes to release a Policy Statement on Palliative and End of Life Care in NSW in mid The aim of the Policy Statement will be to articulate, from PCNSW s perspective, the issues and challenges that impact on the delivery of Palliative Care to the NSW community and to propose recommendations for future policy directions. In doing so we aim to support the goals of NSW Health i which are to: Keep people healthy; Provide the health care that people need; Deliver high quality services; and Manage health services well. The Statement will: Discuss what Palliative Care is, based on nationally accepted definitions; Explain why Palliative Care is important to: The community people with a life-limiting illness, their families and carers The health system; Identify the constraints or barriers in the delivery of care; Make recommendations about priorities for future policy directions impacting on Palliative Care in NSW. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 2

5 The Policy Statement may identify areas requiring further resourcing or funding. However, this is not its prime intent. The Statement will attempt to identify opportunities to better harness and coordinate the range of service providers that meet the medical, physical, psycho-social, cultural and spiritual needs of people with a life limiting illness and to support their families, carers and other support networks. PCNSW believes it is both important and timely to articulate policy issues around Palliative Care as the national health care system and NSW Health undergoes significant reform. With the health care system facing considerable challenges and increasing demands, there is an imperative for reform and change. PCNSW is concerned to ensure that the interests and needs of people who are dying are given due consideration as part of the reform process. This is a challenging proposition for a health care system which, in the main, is designed to treat and cure disease and to provide short-term, episodic care of acute illness ii. PCNSW is of the view that there are opportunities to improve the client focus of services for people who are dying, while achieving improvements in the productivity and efficiency of health care and allied services. In short, providing appropriate care and support, particularly through better resourcing and coordination of primary care and community services, has the potential to significantly enhance the quality of life of the dying, while reducing unnecessary demand for hospital and acute care services. 2.3 Health Promoting Palliative Care Palliative Care NSW supports the construct of Health Promoting Palliative Care. The World Health Organisation says that health is not just the absence of illness, it requires the abilities to identify and realise aspirations, to satisfy needs, and to change or cope with the environment. It is possible to live and die in ways which are harmful and unhealthy equally it is possible to live and die in ways which are healthy and which minimise harms to individuals and groups. Dying and death is not just a biomedical process, it is also a social phenomenon. People who live with life-limiting illnesses, their families and carers, spend most of their time in the broader community, and only a short time as patients interacting with the organised health system. The policies and practices of a range of institutions within our society (government, non-government and private enterprise) can have profound effects some harmful on the experiences of people living with terminal illness, their families and carers: equally it is possible to reform policies and practices so that organisations are more sensitive to the needs of people living with terminal illness. Many people in our community have no experience dealing with the effects of serious illness, death and bereavement, and may benefit from information and education which equips them with the skills and knowledge they need to cope with loss and support others. The areas of public health and health promotion offer powerful ways in which to conceptualise and respond to problems and opportunities which confront communities dealing with the end of life, loss and grief. iii Discussion Point: Do you agree that Health Promoting Palliative Care is an appropriate construct for the development of PCNSW s Policy Statement? Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 3

6 2.4 Methodology This Discussion Paper will draw upon all of the relevant policy and strategic documents that have been developed including: National Palliative Care Strategy 2010 iv NSW Palliative Care Framework v Health Care Reform and Care at the End of Life: A Guidance Document NSW Role Delineation Framework National Palliative Care Strategy 2010 The National Palliative Care Strategy 2010 has four goal areas: Awareness and Understanding Appropriateness and Effectiveness Leadership and Governance Capacity and Capability This Discussion Paper, in Section 6, will refer to the Action Areas under each of these Goal Areas in the National Palliative Care Strategy 2010 when asking you for your comments in considering a PCNSW policy response NSW Palliative Care Framework The NSW Palliative Care Framework sets five priorities for service development over four years: Improving NSW palliative care service planning and delivery; Implementing the national Standards; Improving palliative care workforce capacity and training; Improving palliative care data; Strengthening evidence based practice. These priorities are also encapsulated in the issues addressed in Section NSW Role Delineation Framework The Role Delineation Framework outlines the relationship between specialist and primary care services, and defines three levels of specialist palliative care services in terms of their resources and capability. The discussion in Section 3, What is Palliative Care, draws on this framework National Guidance Document In May 2010, Palliative Care Australia (PCA) vi published Health Care Reform and Care at the End of Life: A Guidance Document (hereinafter referred to as the National Guidance Document). In developing the National Guidance Document, PCA was informed by the National End of Life Framework Forum which had representation from a wide range of professionals including specialist Palliative Care and other health care providers, aged care services, and academics. vii Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 4

7 The purpose of the National Guidance Document is to guide practical action to improve the system s ability to deliver high-quality care to people approaching the end of life in all health care settings. In particular, PCA encourages policymakers, planners and service providers to use the Guidance Document to: Form the basis for strategic and operational service development and improvement plans and priorities; Provide a mechanism for refocusing current quality and service development activities and reviewing investments in health service delivery; and Promote discussion with consumers, clinicians, managers, researchers and policy-makers. For the purposes of this discussion paper, PCNSW endorses the Guidance Document and the National Palliative Care Strategy of 2010 as a framework for considering palliative and end of life care issues in the national health reform debate. Too often, national reforms in health are stymied by inconsistencies or misunderstandings around the use of language, or confusion around the relative priorities of jurisdictions as each State and Territory use different methodologies or approaches to considering and interpreting issues. Adoption of the framework proposed in the PCA Guidance Document will help to ensure that the national reform process can be informed about State and Territory issues and challenges in a structured and consistent way. PCNSW therefore intends to use the framework provided in the National Guidance Document and the Goals in the National Strategy in the development of our Policy Statement. Discussion Points: Do you agree that the NSW Palliative Care Framework and the NSW Role Delineation Framework provide a solid basis from which to promote the NSW position in the National Debate? Do you agree that the Health System Reform and Care at the End of Life: A Guidance Document and the National Palliative Care Strategy 2010 are appropriate frameworks for the development of PCNSW s Policy Statement? Purpose of this Discussion Paper The release of this Discussion paper is the first of a 3 stage process in developing our Policy Statement: Stage 1: Release of this Discussion Paper. The Discussion Paper raises a series of questions and issues and seeks feedback/views from interested parties. Stage 2: Preparation and release of a Draft Policy Statement. The draft Statement will draw on the issues solicited through the Discussion Paper. Stage 3: Preparation and release of the Final Policy Statement. The purpose of this Discussion Paper is to provoke discussion and debate around the issues that should be included in our Policy Statement. Feedback is welcomed from our members, the general community, Palliative Care services and other health service professionals, policy makers, and Parliamentarians. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 5

8 2.4.6 How You Can Provide Feedback Anyone wishing to provide input, or comment on this Discussion Paper can do so by making a written submission by Monday 16 January Submissions should be sent by: Post: or Executive Officer, Palliative Care NSW PO Box 487, Strawberry Hills NSW 2012 info@palliativecarensw.org.au Anyone wishing to discuss the issues raised in the Paper is welcome to contact Carolyn Walsh, Chair of the PCNSW Policy Sub-Committee ( ) or Linda Hansen, PCNSW Executive Officer ( ). Telephone hook-ups with groups of members or service providers in regional areas can also be arranged should they wish to discuss the development of the Statement (beyond putting in a written submission). Groups wishing to do so should contact Linda Hansen at info@palliativecarensw.org.au or by phone on Finalising the Policy Statement PCNSW will release the draft Policy Statement by early February The draft will be developed on the basis of feedback from the questions posed in this Discussion Paper. Stakeholders will have a further opportunity to comment on the Draft Policy Statement in early A Final Policy Statement will be released by mid Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 6

9 3. What is Palliative Care Palliative Care is an approach that improves the quality of life of patients and their families facing the challenges associated with life limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. viii Palliative Care is interdisciplinary care, delivered by coordinated medical, nursing, allied health and social services and integrating the physical, psychological, social, spiritual and cultural aspects of care. It recognises the patient and family as the unit of care, and respects the right of each patient to make informed choices about the care they receive. It offers, through a mixture of specialist and primary care providers, as well as community partnerships, a support system to help people live as actively and well as possible until death. Palliative Care also plays an important role in helping the family cope during the patient s illness and in their own bereavement. The NSW Health Palliative Care Role Delineation Framework ix makes clear that palliative and end of life care can be provided by a range of health care professionals, with Specialist Palliative Care services playing an essential provider and supportive role. Palliative Care Services have been at the forefront of symptom management, supportive care, advance care planning and excellence in end of life care, focussing on quality of life and quality of death for some time in NSW, and PCNSW has seen a growing demand for the provision of services, and for information about Palliative Care. Whilst the demand for Palliative Care has increased, and will continue to do so, it is important to note that most people will face the end stages of life without the need to access Palliative Care. Who can benefit from Palliative Care? Palliative Care is provided on a needs basis to people living with a life limiting illness, including children. It can be an adjunct to ongoing treatment and can be delivered from diagnosis to bereavement. There is no need to necessarily cease ongoing treatment for a life-limiting illness just because a person is accessing Palliative Care e.g. a cancer patient receiving Palliative Care may still be receiving treatment to extend their life through chemotherapy. Despite these accepted definitions and Frameworks, there is often confusion and misunderstanding of what Palliative Care is, and what it means to be a Palliative Care patient. This is not just within the broader community, but within the health system. This confusion is, itself, an impediment to the development of a coherent and consistent approach to care for people with a life-limiting illness: Some patients or their families may resist seeking access to Palliative Care services early in the diagnosis of a life limiting illness as they may perceive Palliative Care as being relevant only in the last days or weeks of life. They may also fear that seeking Palliative Care means that treatments to extend life will be withdrawn, or that measures will be taken to actively shorten the patient s life. It is important to emphasise that Palliative Care intends neither to hasten nor postpone death. In fact, Palliative Care may be applicable early in the course of an illness in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation x Within the health system, similar misperceptions may prevent clinicians from referring patients to Palliative Care services, particularly early in the diagnosis of the illness. There is also a potential for primary service providers and clinicians in hospital and acute settings to view the care for the dying as a specialist area and to therefore refer dying patients to specialist Palliative Care services (where they are available), rather than seeing care for the dying as a continuum of primary care. While such referrals may be appropriate, it is important that primary care providers are not deskilled, or discouraged, from dealing with the needs of the dying. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 7

10 In developing any policy position, it is important to clearly articulate the scope and type of issues that are relevant to the proposed policy. It is important, therefore, that the Policy Statement be based on an agreed understanding of what is meant by Palliative Care. PCNSW proposes the following definitions and explanative material as a basis for defining the scope of issues and challenges that are relevant to the Policy Statement. The definitions are based on those provided in the national Standards for Providing Quality Palliative Care for All Australians. Palliative Care is care provided for people of all ages who have a life limiting illness, with little or no prospect of cure, and for whom the primary (but not necessarily the only) treatment goal is quality of life. xi A life limiting illness is an illness where it is expected that death will be a direct consequence of the specified illness. It includes illnesses of a malignant and non-malignant nature. A life limiting illness can be expected to shorten a patient s life. This differs from chronic illnesses where, even though there may be a significant impact on the patient s quality of life, there is a less direct relationship between the chronic illness and the person s death. xii The services needed by people with a life-limiting illness can include: Assessment, management and review of pain and other distressing symptoms; Support that helps people with a life-limiting illness live as actively as possible until death. This might include, for patients living in a home setting, access to equipment (such as oxygen, wheel chairs, walkers, ergonomic beds, commodes, hand rails and so on) as well as community support services, such as home help and access to community transport; Access to services that support the patient s psychological, spiritual or cultural needs; Support to help the family cope during the patient s illness and in bereavement. This can include access to information and counselling services. Home help support for the patient, as described above, also provides a form of support to families and carers as they provide respite for carers. Discussion Point: Does this adequately describe the range of services that might be needed by a person with a life limiting illness, and their families and carers? Such services are provided by a range of service providers, in a range of care settings. xiii Service providers include: Primary care providers: all health services and staff that have a primary or first contact relationship with the patient. Primary care providers include GPs, community nurses, staff of residential aged care facilities, community health centres and allied health services. They also include other specialist services and staff, such as oncologists, renal, cardiac or respiratory physicians, and staff of acute care hospitals and services. While these are specialist services in their own right, they also play an important and on-going role in providing care to a patient with a lifelimiting illness. However, the substantive work of such primary care providers would not be with people who have a life-limiting illness their predominant workload is focused on treatment and cure. Specialist Palliative Care Providers: medical, nursing or allied health professionals who are recognised as a specialist Palliative Care provider by an accrediting body (or who primarily work in Palliative Care if an accrediting body is not available). Specialists work primarily in providing consultative or on-going care for patients with a life limiting illness, and support for their caregiver/s and family. Specialist services take a multidisciplinary approach to meeting the holistic needs of the patient; Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 8

11 The settings in which services might be provided are as varied as the living circumstances of the patients themselves. Services are delivered where the patient is, which may be in: the home (of the patient or their carer), including residential aged care facilities; acute hospital settings; Palliative Care units (sometimes known as hospices ). The services provided to a particular patient, and the setting in which they are provided, may (and usually does) change often throughout the period in which the patient receives Palliative Care. It is not a linear trajectory. A patient may move between their home, an acute inpatient facility or designated Palliative Care Unit many times in the course of their illness. While the discussion above outlines the range of services, and the care settings, for people with life limiting illnesses, there remains a debate around the definition of Palliative Care itself. The core of the debate seems to be whether it is only specialist Palliative Care services that provide Palliative Care, or whether all services meeting the needs of a patient with a life-limiting illness can be considered as Palliative Care. In PCNSW s view, the real issue is whether the needs of people with life-limiting illnesses and their families or carers are met in a way that achieves our health care goals i.e. to keep people healthy (and for palliative patients this means as well as practicable given the nature of their illness); to provide the health care that people need; to deliver high quality services, and to manage health services well in the most appropriate setting. These goals can only be met if all services are drawn upon if and when necessary. It is not an either/or option. Both specialist and primary care will play a part in the effective treatment and care for the dying, and need to be used in collaboration with each other. For the purposes of this Discussion Paper, PCNSW therefore proposes to adopt a broad definition of Palliative Care that includes the full range of care and support that might be required by a person diagnosed with a life limiting illness. PCNSW believes this approach is consistent with the national Standards for Providing Quality Palliative Care, and the PCA National Guidance Document on Health System Reform and Care at the End of Life. Discussion Point: Does the discussion above provide an accurate definition of Palliative Care and a useful and complete explanation of the range and scope of care relevant to patients with a life-limiting illness? Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 9

12 4. Why is Palliative Care Important? To: The Community patients, carers and families The Health System 4.1 The Community patients, carers and families There is compelling evidence that the demand for end of life care, including Palliative Care, will increase significantly over coming decades: The number of people aged 85+ is expected to increase by more than 56% between 2006 and Improvements in health care over recent decades have resulted in people living longer. However, they are living longer with more complex health issues e.g. dementia, diabetes, cardiovascular, respiratory and musculoskeletal problems. Caring for this greater number of older people with increasingly complex healthcare needs is becoming increasingly costly; The World Health Organisation predicts that by 2020 chronic disease (i.e. an illness that is long-lasting or recurrent such as diabetes, arthritis, some types of heart disease or cancer) will account for almost 75% of all deaths; this trend is reflected in Australia; The demand for Palliative Care services is expected to increase by at least 4.6% annually in NSW; Over 70,000 NSW citizens die each year. Palliative Care enhances quality of life for people with a life-limiting illness and their families: Physically, by relieving pain and discomfort and by controlling other symptoms such as nausea, constipation and lethargy which can be associated with a life-limiting illness, or a side effect of the treatment thereof; Psychologically, by helping to alleviate the fear associated with death and dying, and by treating people with dignity and respect during these difficult times, patients, carers and their families can arrive at a sense of acceptance, confident that they will live well until they die; Spiritually people s needs vary widely as death approaches, but they commonly include the need to understand what is happening, resolve issues with family and friends, achieve a sense of completion emotionally and spiritually, and come to terms with significant life changes; Socially, by reducing feelings of isolation through the engagement of volunteers and local support networks in the appropriate cultural context. 4.2 The Health System Through ensuring Palliative Care provision receives a valid share of Commonwealth sub-acute monies together with an improved share of State funds, pressure on the acute care system can be supported in three ways: Provision of sub-acute beds for Palliative Care enables transfer of appropriate patients away from acute beds; Improved resources for community Palliative Care increases community (non-hospital) stays; Acute inpatient Palliative Care hospital consultation teams facilitate discharge or transfer out of the acute care system where possible, as well as reducing the use of clinically futile treatments. Improved access to Palliative Care services has the potential to improve both the effectiveness and the efficiency of healthcare services for the dying, and the healthcare system as a whole: Efficiency by avoiding inappropriate and preventable admissions to emergency and acute services, thus, a more cost-effective use of health resources. Further, by minimising or avoiding investigations, treatments and procedures that offer no improvement in quality of life. Effectiveness by providing better outcomes for patients and their families. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 10

13 A conservative analysis of available data indicates that the cost of Palliative Care services can be between 50% and 300% less expensive than care in an acute bed or intensive care bed. The estimated costs of this can be broken down as follows: An ICU Bed costs around $4000 per patient, per day, or $1.5M per bed per year, according to Professor Ken Hillman, who says at least half of my ICU patients shouldn t be there Dying in ICU is a very cruel, awful way to die. xiv ; Senior Intensive Care Specialist Dr Peter Saul says in terms of health costs, our final year of life is our most expensive. Almost all of this expense is in the last few weeks. Dying in an ICU costs more than most of us have ever paid in contributions to the Medicare levy. Nor is it a particularly pleasant experience. Evidence suggests that as many as half the people admitted to an ICU at the end of life would have chosen otherwise had they been given the choice; xv An Acute Hospital Bed costs >$1100 per day on average; Ambulance callouts cost between $300 and $5000; The cost of Palliative Care varies depending on where it is provided and the particular needs of the patient, but it has been broadly estimated at between $200 per day (for a patient in an Aged Care Facility) and $600 per day (for an Inpatient Palliative Care Facility). Palliative Care can play a pivotal role in the broader health system in achieving the goals of the NSW Health State Plan and Caring Together The Health Action Plan for NSW. A greater awareness of, and investment in Palliative Care would help address several of the key strategies in both of these documents, including: Make prevention everybody s business Palliative Care can help prevent the types of distressing, often lengthy, costly and unnecessary acute hospital admissions at the end of a patient s life; Create better experiences for people using health services One of the principal aims of Palliative Care is to enhance quality of life, and create better experiences for patients and their families. Studies in the US have shown that families of patients who have undergone Palliative Care and have received bereavement counselling have much better experiences during the terminal phase of their loved one s illness, have an acceptance of death and lower rates of depression six months after the death. A further study of patients receiving treatment for metastatic lung cancer who also received early Palliative Care support may live longer and with better quality of life, including decreased depression; xvi Make smart choices about the costs and benefits of health services Investing more in Palliative Care Services has the double benefit of achieving significant financial savings, and freeing up acute hospital beds. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 11

14 Case Study Saving Acute Care Resources Andrea is 79 and has breast cancer which has extended into her bones. She is being treated with chemotherapy in an attempt to extend her life and minimise symptoms, but the cancer has spread so far it is not curable. Andrea has been registered with a Community Palliative Care Service, as her illness is terminal.a This means she has 24 hour access to specialist advice and home visit services. Her symptoms are becoming more complex, particularly as an elderly person with other health issues. Andrea has just been discharged from hospital following a stomach bleed. That night, at home, she feels dizzy and nauseous. As Andrea was registered with the Community Palliative Care Service, her daughter Jill calls the Palliative Care team, knowing they would be able to help. Calling for an ambulance would otherwise have been her only option. Andrea is too frail and ill for Jill to take her to hospital on her own. A Palliative Care nurse arrives within an hour, and identifies that Andrea is still on high blood pressure medication, even though (with her significant weight loss) she now has low blood pressure. The Nurse calls Andrea s GP on the after hours call line and they agree that Andrea should immediately be taken off her blood pressure medication. The nurse settles Andrea, reassures her daughter but notes that they should call again if the symptoms worsen. Andrea s symptoms ease and she stays at home and recovers well from the stomach bleed. The support of the Palliative care system: Provided reassurance to Andrea and her daughter; Allowed Andrea to stay at home, comfortable in her own bed; Prevented the unnecessary use and cost of an ambulance; Prevented the unnecessary use and cost of accessing an Emergency Department; Allowed Andrea s medical files at home to be kept up to date. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 12

15 5. National Health Reform and Palliative Care 5.1 National Palliative Care Standards The national Standards for Providing Quality Palliative Care for All Australians are based upon a set of values that have been endorsed by consumers and health care professionals xvii. The values set out the things that patients, families and health care professionals believe are most important in the delivery of care to people reaching the end of their lives. The values state that quality care is provided by health workers who: Endeavour to maintain the dignity of the patients, their caregivers and family; Work within the strengths and limitations of the patient, their caregivers and family to empower them in managing their own situation; Act with compassion towards the patient, their caregivers and family; Consider equity in the accessibility of services and in the allocation of resources; Demonstrate respect for the patient, their caregivers and family; Advocate on behalf of the expressed wishes of patients, caregivers, families and communities; Are committed to the pursuit of excellence in the provision of care and support; and Are accountable to patients, caregivers, families and communities. Flowing from these values are 13 specific standards for Palliative care services. The standards are summarised in Figure 1 below. Figure 1: National Palliative Care Standards Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 13

16 5.2 National Health Reforms PCA s National Guidance Document sets out the most significant recent initiatives shaping the nature of health care reform in Australia xviii. These include: The establishment of the National Health and Hospitals Reform Commission (NHHRC) which has to date produced two key documents that have set the reform agenda for negotiations under the Council of Australian Governments (COAG) framework; The release of Building a 21st Century Primary Health Care Strategy by the Commonwealth Department of Health and Ageing that provides a roadmap to guide future policy and practice in primary health care in Australia; The development of a future model for safety and quality accreditation by the Australian Commission on Safety and Quality in Health Care (ACSQHC) The NHHRC Final Report The Final Report of the NHHRC concluded that, while the Australian health system has many strengths, it is a system under growing pressure, particularly as the health needs of our population change xix. The challenges include: increasing demand for, and expenditure on, care; unacceptable inequities in health outcomes and access to services; growing concerns about safety; workforce shortages; and inefficiencies. The report also notes the fragmented nature of the health system with complex funding arrangements and accountabilities between different levels of government. The NHHRC Report identified three main goals: Tackling major access and equity issues; Redesigning the health system to meet emerging challenges; and Creating an agile and self-improving health system. Key themes underpinning these goals, and which are particularly relevant to end of life care, include: the connection and integration of health and aged care services; the ability of patients to receive the right care in the right setting; integrating multi-disciplinary primary health care services and improving access to services in the community; better coordination and continuity of care for people with more complex health problems; strengthened consumer engagement and empowerment. As noted in the National Guidance Document, the NHHRC also made four specific recommendations on caring for people at the end of life: building the capacity and competence of the primary health care services, including Comprehensive Primary Health Care Centres and Services, to provide generalist Palliative Care support for dying patients. This will require greater educational support and improved collaboration and networking with specialist Palliative Care service providers; strengthening access to specialist Palliative Care services for all relevant patients across a range of settings, with special emphasis on people living in residential aged care facilities; additional investment in specialist Palliative Care services to support greater availability of these services to people living at home in the community; advance care planning that is funded and implemented nationally, commencing with all residential aged care services. This will require a national approach to education and training of health professionals including greater awareness of the common law right of people to make decisions on their health treatment, including their right to decline treatment. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 14

17 Discussion Points: Do you agree with the recommendations of the NHHRC with respect to Palliative Care? Do the recommendations focus on the issues of greatest priority, that is, that will best meet the needs of patients, their caregivers and families? Are there issues here of particular importance or relevance to NSW? Case Study Interface with a Residential Aged Care Facility Mrs G is 87 years old and widowed with two children. One has a long standing psychiatric history and cognitive impairment and the other estranged from his sibling and mother. Mrs G has a history of advanced dementia, congestive cardiac failure and a stage 4 pressure area on her sacrum. Mrs G had been living in a Residential Aged Care Facility (RACF) for the past 5 years. Mrs G had been transferred from the RACF to the Emergency Department (ED) 7 times in the past 12 months for dehydration, urinary tract infections and sepsis. In one admission she spent 5 days in ICU following surgery to debride her sacral wound. As Mrs G s GP was not contactable after hours and there was no Advance Care Directive, the RACF had no choice but to transfer Mrs G to the ED each time she became acutely unwell. An allied health professional referred Mrs G to a Palliative Care service after meeting with her daughter. Mrs G was transferred the next day. Her daughter accompanied her to the Palliative Care Unit and stayed with her for the 3 days before Mrs G died comfortably. Social Workers were able to assist her daughter with the practicalities of dealing with her mother s death as well as refer her to a bereavement service. Because Mrs G s did not have a malignant diagnosis, the RACF incorrectly exempted her from a referral to Palliative Care. If Mrs G had been referred to Palliative Care earlier: many transfers to the Emergency Department would probably have been avoided; she would have been more likely to have been cared for in the RACF; consultative advice from a Specialist Palliative Care Service would have been available at no charge to the RACF. In most regions (predominantly metro) this is available 24 hours a day. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 15

18 5.2.2 The Primary Care Strategy The Building a 21st Century Primary Health Care Strategy also notes that Australia s primary health care services operate as a disparate set of services, rather than an integrated service system xx. The services received by patients therefore depend as much on where they live, their particular condition and the particular service providers involved, as their clinical needs and circumstances. Patients with complex needs are often left to navigate the system themselves, are hampered by gaps in information, and therefore have a limited ability to influence decisions about their care. The Strategy aims to: Improve access and reduce inequity; Better manage chronic conditions; and Improve quality, safety, performance and accountability. The Strategy echoes similar themes to the NHHRC in relation to the need to match services to patient needs, build multi-disciplinary teams, improve information sharing, and drive continuous improvement based on evidence Australian Commission for Safety and Quality in Health Care The ACSQHC has developed a national quality and safety framework to address safety and quality issues within the health system xxi. The framework proposes three key areas of direction for health services: Consumer focused care, that is; Driven by information; and Organised for safety. Again, similar themes emerge through the ACSQHC report, including the need to develop models of service delivery that improve access to health care for patients; to enable patients to get access to the right care when they need it; improve health literacy that supports patients in taking greater responsibility for their health care and that involves patients in their health care decisions; enhancing the continuity of care; and using data and evidence to drive performance. The ACSQHC particularly emphasises the need to reduce unjustified variation in the standard of care through embedding guidelines in clinical practice and monitoring their compliance COAG s Response to the National Reform Agenda COAG began the process of responding to these proposed health reforms with the announcement in April 2010 of the development of a National Health and Hospitals Network xxii. PCA s National Guidance Document provides a summary of what it considers to be the most significant initiatives in the COAG announcement with respect to Palliative Care. PCA argues these initiatives would lay the foundations for long-term improvements in palliative and end of life services. They include xxiii : The Commonwealth taking full funding and policy responsibility for GP and primary health care services in Australia; The establishment of primary health care organisations with strong links to local communities, allied health professionals and service providers including Aboriginal Medical Services to: Improve access to services and drive integration across GP and primary health care services so that patients can conveniently access the full range of services they need; Facilitate allied health care and other support for people with chronic conditions; Identify groups of people missing out on primary health care, or services that a local area needs, and respond to these gaps; Work with hospital networks to assist patient transition in and out of hospital. Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 16

19 Major investments to train more health professionals, including GPs and specialists and allied health professionals, in rural and regional areas; Improving incentives for GPs to provide more services in aged care. Discussion Points: Do you agree that the response to the national reform agenda has identified the most significant issues with respect to Palliative Care services? Do you support the thrust of these proposed initiatives? Are any of particular importance and relevance to NSW? The Productivity Commission Report Caring for Older Australians The Productivity Commission released its report called Caring for Older Australians in August The Report recommends the replacement of the current system of discrete care packages across community and residential care with a single integrated and flexible system of entitlements. The System would cover services including palliative care. The Report also recommends that the Australian Government should ensure that residential and community care providers receive appropriate payments for delivering palliative and end of life care. The Report recommends a flexible funding model which supports individual choice and will help to ensure that people are assisted to die in the place of their choice, with the people they wish to be present. The Commission has also identified the need to fund education for aged care staff and carers to increase knowledge, awareness and understanding of a palliative approach to care of the elderly. The report also recommends that end of life care should be a basic competency for aged care workers. The report also highlights the importance of Advance Care Planning in ensuring people have greater choice and control over their end of life care options. It also states that Advance Directives should form part of a person s electronic health record. Discussion Point: Do you agree that the recommendations of the Productivity Commission Report would impact positively on the provision of quality palliative and end of life care in NSW and if so that PCNSW should endorse these recommendations in its policy document? Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 17

20 6. Moving Towards an Integrated System of End of Life Care The National Guidance Document argues that our vision for integrating care at the end of life needs to be well grounded in the three sets of parallel reform processes : that is the NHHRC Report, the Primary Care Strategy and the ACSQHC Report. The Guidance Document proposes a national end of life care framework based around three main constructs that are derived from the ACSQHC model ie: Person and Carer Focused Driven by Information Organised for Safety and Quality. The reform initiatives proposed by the NHHRC, Primary Care Strategy and ACSQHC model are aligned under these constructs within 11 domains. The National Strategy has four Goal Areas and these will intersect with the Guidance Document constructs in many instances but not all. The four Goal Areas are: Awareness and Understanding Appropriateness and Effectiveness Leadership and Governance Capacity and Capability 6.1 Care that is Person and Carer Focused Making Informed Decisions about Care Domain 1 of the National End of Life Framework Forum s Guidance Document (referred to hereafter as the Guidance Document) seeks to achieve the empowerment of patients to make fully informed decisions. In doing so it calls for consumer and carer involvement in end of life care planning. Goal 2 of the National Palliative Care Strategy (the National Strategy) seeks to support the national roll out of Advance Care Planning including addressing any barriers to uptake. Discussion Points: Are the policies and tools to support consumer and carer involvement in advance care planning available and adequate? Do they adequately set out the options available to patients and carers so they may make informed decisions about their care planning? If so, are they disseminated and used effectively? Are there variations in the dissemination and use of such tools Between care settings? Between regions? Is the Advance Care Planning framework sufficiently flexible to cover the inherently changeable nature of end of life planning? Palliative care in Nsw Palliative Care NSW Policy Statement Discussion Paper 18