TWF-framework-doc-Eng-2015-final-April1.pdf

THE WAY FORWARD NATIONAL FRAMEWORK: a r o a d m a p f o r a n i n t e g r at e d pa l l i at i v e a p p r o a c h t o c a r e w ww. hpcintegra t io n. ca...

THE WAY FORWARD NATIONAL FRAMEWORK: a r o a d m a p f o r a n i n t e g r at e d pa l l i at i v e a p p r o a c h t o c a r e w ww. hpcintegra t io n. ca final march 2015 imagine a time when hospice palliative care is available to canadians when and where they need it; where living well until death is the goal of care. the Way forward – a roadmap for an integrated palliative approach to care – can help us get there. changes are already underway in care settings across the country. You can be part of the change. the Way forward initiative would like to thank the many healthcare providers, policymakers, organizations, and families and caregivers across all sectors -- including federal, provincial and territorial governments, home care, primary/acute care, long-term care and organizations representing canada’s first peoples – who helped create The National Framework: A Roadmap for an Integrated Palliative Approach to Care. the framework benefited greatly from your wisdom and advice. We would also like to thank the government of canada for recognizing the importance of the issues and having the foresight to fund this ground-breaking initiative.  Table of Contents Preface.............................................................................................2 Executive Summary.........................................................................4 A Roadmap to Guide Change.........................................................6 The Need for a System-wide Shift...................................................8 I. A Case for an Integrated Palliative Approach to Care............9 Dying is Part of Living......................................................................9 The Challenge: The Way We Die is Changing................................9 The Opportunity: An Integrated Palliative Approach....................11 II. About an Integrated Palliative Approach to Care...............13 What is Hospice Palliative Care?...................................................13 What is an Integrated Palliative Approach to Care?.....................14 Where will an Integrated Palliative Approach be Provided?.........15 Who will Provide an Integrated Palliative Approach to Care?......16 Why Adopt an Integrated Palliative Approach to Care?...............18 III. The National Framework....................................................21 Vision................................................................................................21 Goals.................................................................................................21 Principles..........................................................................................21 The Benefits of the National Framework..........................................22 Desired Outcomes........................................................................23 Our Roadmap................................................................................24 IV. The Framework in Action on the Front Lines......................31 Federal, Provincial and Territorial Governments: Develop Policies and Support the System....................................32 Regional Program Planners: Create a Seamless Network of Services........................................36 Care Settings and Providers: Find Practical Ways to Deliver an Integrated Palliative Approach.................................................40 Long-Term Care..........................................................................40 Home Care.................................................................................44 Home Care in First Nations and Inuit Communities...................47 Primary Care...............................................................................48 Chronic Disease Management Teams/Acute Care.....................50 V. Next Steps..........................................................................52 Appendix: QELCCC......................................................................53 References.....................................................................................54 Lexicon of Terms...........................................................................56 Advisory Committee and Project Staff..........................................58 For citation: Canadian Hospice Palliative Care Association, The Way Forward National Framework: A roadmap for an integrated palliative approach to care, The Way Forward initiative, March 2015. Table of Contents 1  Preface The Way Forward is the result of a Heart and Stroke Foundation and the collaborative three-year initiative led by the Canadian Cancer Society. Quality End-of-Life Care Coalition of Canada Building on successful initiatives already (QELCCC), managed by the Canadian underway across Canada, The Way Forward Hospice Palliative Care Association identified best practices that could help all care (CHPCA), and supported by one-time settings implement an integrated palliative funding from the Government of Canada. It approach to care and ensure that culturally engaged healthcare sectors, professionals sensitive, supportive hospice palliative care and governments in creating a roadmap for services are available to all those who can an integrated palliative approach to care in: benefit, regardless of where they live in Canada. community settings where care is The Way Forward consists of this document – a delivered. This includes primary care National Framework – and a series of other tools practices, home care, long-term care, including: residential hospices, hospitals and other places where people may live and die. six key discussion documents describing an integrated palliative approach, innovative organizations that provide care for people models around the world, the cost- with chronic illnesses, including day effectiveness of a palliative approach, among programs and disease-specific support others; groups like the Alzheimer’s Society, the An integrated palliative approach to care focuses on meeting a person’s and family’s full range of needs – physical, psychosocial and spiritual – at all stages of frailty or chronic illness, not just at the end of life. It reinforces the person’s autonomy and right to be actively involved in his or her own care – and strives to give individuals and families a greater sense of control. It sees hospice palliative care as less of a discrete service offered to dying persons when treatment is no longer effective and more of a simultaneous or integrated approach to care that can enhance their quality of life throughout the course of their illness or the process of aging. 2 Preface  Together, they summarize the research on the health impact and cost-effectiveness of an integrated palliative approach to care. They also provide best practices and other information that settings can use to make the case for change and implement an integrated palliative approach to care. The first draft of the framework was developed in the spring of 2013 by The Way Forward an environmental scan of national and advisory committee with advice from members international indicators and frameworks; of the QELCCC. It was distributed widely and then revised and refined based on feedback the report of a national survey on “What from governments, healthcare professionals, Canadians Say” about hospice palliative care, organizations across the country, including First an integrated palliative approach to care, and Nations groups, and Canadians facing care advance care planning; issues associated with aging, frailty and chronic a report on primary care research that illnesses. surveyed general/family practitioners and Since then, organizations across Canada – nurses and palliative care; including the Government of Alberta, the informative infographics and backgrounders; Canadian Home Care Association, the Canadian Nurses Association, and the Canadian Medical a Lexicon of Terms related to an integrated Association, among others – have used the palliative approach to care; framework to implement an integrated palliative the consultative report on Family Caregivers; approach to care. Used alone or with the Speak Up! Toolkit – the national advance care planning five interactive modules based on the National initiative – The Way Forward can enhance care Framework; and and quality of life for Canadians. two educational videos. The National Framework reflects ideas and feedback from governments, healthcare professionals, organizations and individuals, including First Nations groups. Preface 3  Executive Summary Historically, hospice palliative care was that many are never identified as being at offered only to people who were in the risk of dying or offered the benefits of last weeks or months of life, when all palliative care services — such as social curative treatments had been exhausted. support, advance care planning, and At that point, the focus of care shifted effective pain and symptom management from cure to comfort. But illness — throughout their illness. trajectories are changing. Thanks to Only a small proportion of Canadians will advances in medical treatment, people need the kind of complex, intensive or who are aging or who are diagnosed with tertiary hospice palliative care provided life-threatening illnesses can now live by expert palliative care teams in many years with their condition — or they institutional settings, such as residential could die suddenly. Their time of death is hospices and acute care hospitals. often difficult to predict, which means However, everyone who is becoming frail or is faced with a chronic illness could benefit from certain key palliative care CASe STudy services. As our population ages, we must Thérese is 86 years old. She is becoming ensure that all Canadians have access to frailer as she ages. Her arthritis bothers her palliative services integrated with their more these days and she has a heart other care to help them manage symptoms, enhance their lives, give them condition that affects her ability to walk for a greater sense of control, and enable very long. Her doctor would not be them to make informed decisions about surprised if Thérese died in the next three the care they want. More equitable access or four months but she could also live for to palliative care integrated with their another few years. Her husband died two other care will enable more Canadians to years ago as did one of her neighbours, who live well with their illness up to the end of was a close friend. One of her daughters life. It will also enable more people to lives in town and drops by every few days. receive care in the setting of their choice and reduce the demand on acute care Her other children live several hours away. resources. Thérese is aware that she is nearing the end of life. She would like the opportunity to talk to her doctor and family about what she wants for her care. She is also experiencing more pain and discomfort and would appreciate some psychosocial support to help her deal with all the losses in her life. 4 Executive Summary Everyone who is becoming frail or is faced with a chronic illness could benefit from certain key palliative care services. Executive Summary 5  A Roadmap to Guide Change To help all Canadians benefit from can be delivered by a range of providers palliative care programs and services, we to people throughout their illness must shift practice. We must move away trajectory, based on their needs and from thinking that palliative care is only preferences. We must also identify ways about care at the end of life, once to adapt an integrated palliative approach curative treatments have stopped. We to Canada’s diverse healthcare must distinguish between the expert environments as well as to the unique hospice palliative care services provided needs and jurisdictional realities of all by specialized teams for people with people in Canada, including Canada’s complex needs at end of life and an First Peoples. integrated palliative approach to care that We must move away from thinking that palliative care is only about care at the end of life... 6 A Roadmap to Guide Change vision All people in Canada who are aging and/or have chronic life-limiting conditions will have the opportunity to benefit from an integrated palliative approach to care. goals of an integrated palliative approach to care 1. Canadians will talk with their care providers about advance care planning, and discuss their wishes early and often as their illness progresses or as they age. 2. People who are aging, frail and/or have chronic illnesses will receive hospice palliative care services integrated with their other care in the setting of their choice. 3. People who are aging, frail and/or have chronic illnesses will receive consistent, seamless integrated care if/when they must change care settings. impact all care settings are able to provide holistic care that respects the person’s values and preferences; more people in Canada and their families have access to high quality integrated palliative care services that reflect their goals, help them enjoy good quality of life and ensure they have a stronger voice in their care (i.e. more autonomy); people can move seamlessly from one care setting to another if their needs change; there is less need for emergency visits and unplanned hospitalizations, with a system able to make more effective use of health resources. Vision, Goals, Impact 7  The Need for a System-wide Shift Ensuring that all people in Canada have Everyone has a role to play. Organizations access to an integrated palliative and settings do not need to wait for approach to care requires significant shifts federal, provincial/territorial or regional throughout the healthcare system. action. An integrated palliative approach Based on the practical experience of can start anywhere – and should start people and organizations already leading everywhere. the change to this kind of system-wide shift, we must continue to: 1. Promote and support a shift in practice culture; 2. Establish a common language; 3. educate and support providers; 4. Engage Canadians in advance care planning; 5. Create caring communities; 6. Adapt an integrated palliative approach to provide culturally-safe care, including with and for Canada’s First Peoples; 7. Develop outcome measures and monitor the change. This framework describes concrete steps that can be taken at the federal and provincial/territorial levels, the regional An integrated palliative health planning level and in each sector or setting – including long-term care, home approach can start care, primary care, acute care and anywhere - and should specialized hospice palliative care – to start everywhere. help the system make the shift. 8 The Need for a System-wide Shift I. A Case for an Integrated Palliative Approach to Care Dying is Part of Living Treatment advances have helped extend Only 10% of people die suddenly. The our lives. Canadians – including those of other 90% of us will require care and us who have a chronic illness or are support at the end of life. Only a small becoming increasingly old and frail – are proportion of Canadians – about 15% – living longer, but we will all still die. will need the kind of complex (tertiary) hospice palliative care services provided As we age with these illnesses and by specialists in residential hospices and frailties, we are both living and dying. To palliative care units. For the rest of us, our provide the best possible care, our needs can be met by integrating a healthcare system must acknowledge that palliative approach into the care we dying is part of living. The care we receive receive in whatever setting we are in, such should help us manage and maintain our as at home, in a long-term care facility, in health and plan for the kind of care we hospital – even in a shelter or prison. want as well as help us prepare for death. (iPANEL, 2012) The Challenge: The Way We Die is Changing In the past, many Canadians would die suddenly from an infectious disease, a sudden fatal event such as a heart attack, stroke or organ failure, or they would have a diagnosis, like cancer or AIDS, that had a recognizable terminal phase. Their providers could predict, with relative accuracy, how long they would live. In the Most people with life- last few weeks of life, they may have received organized hospice palliative care limiting and serious illness services that would help meet their “dwell in the indistinct zone physical, psychosocial and spiritual needs, of chronic illness that has no and enhance their living even at the end specific care delivery of life. However, that predictable decline from illness to death is no longer as system”. (Lynn, 2004) common. I. A Case for an Integrated Palliative Approach to Care 9  Six in ten Canadians (57%) either personally suffer from a chronic illness or have someone in their immediate family with a chronic illness. (CHPCA Fact Sheet, 2014) Chronic diseases account for 70% of all deaths. (CHPCA Fact Sheet, 2014) Most people will die with an illness that has no recognizable terminal phase, although they will have lived for months or years in a state of fragile health or “vulnerable frailty.” (Lynn, 2005) Canadians are now more likely to survive a heart from palliative care services. (iPANEL, 2012) This attack or a diagnosis of cancer, and they are is why the “surprise” question – that is, given this also more likely to be living long-term with two person’s condition, would it be a surprise if he or or more chronic conditions. As they age, they she were to die? — has become so important. become more frail and vulnerable to infections This question puts the emphasis on what could or falls that could lead to death. Because of happen – given changing illness trajectories – their complex health needs, they can rather than on a physician’s ability to predict deteriorate quickly and die suddenly or they when someone will die. can experience periodic crises and The surprise question also helps healthcare complications related to their condition that providers think more holistically about the can lead to death – without ever being person’s physical, emotional and spiritual needs identified as being near the end of life. Because throughout the illness trajectory. These needs, “when” they will die is less predictable, most which include pain, loss of mobility and other people never receive the palliative care services functions, physical and mental limitations, and that could enhance life even in the face of loss of roles and relationships (Cochrane et al, chronic illnesses. For example, three-quarters 2008), are not being adequately met by current of British Columbians who die do so without health services. For example: being identified as people who could benefit John, age 67, has coronary artery disease, Mary, age 79, has diabetes, hypertension, chronic renal failure and hypertension and atrial fibrillation. He has osteoarthritis. She had been taking NSAIDS for hip and knee pain, had two heart attacks in the past two years which led to her being hospitalized for acute renal failure. Her and, each time, he was sick enough to die. physician discussed the options with her family and she agreed to a Each time he recovered, but with reduced two-week trial of hemodialysis. Her kidneys improved enough for heart function. He is weak and unsteady on her to stop dialysis but the underlying condition remained. Mary his feet, and suffers from shortness of didn’t want to have dialysis again. She hated the experience of breath. His future is unpredictable: he could being tied to a machine and felt it had a negative impact on her live for days or years. He would like help quality of life. However, she did want some kind of treatment for her controlling his symptoms and improving his aching joints and the burning in her hands and feet. She wasn’t sure quality of life, but the care he receives at the how to discuss her wishes with her family who wanted her to take cardiac clinic is mainly focused on managing advantage of all possible treatments. These discussions are an his cardiac disease and responding to integral part of formal hospice palliative care but Mary didn’t fit the cardiac events. usual criteria to receive those services. Being diagnosed as “close to death” should no longer be the trigger for Canadians to receive services that can enhance their health and well-being, their living and their dying. 10 I. A Case for an Integrated Palliative Approach to Care  An Integrated Palliative Approach Can Close the Care Gap The palliative approach integrates key aspects of hospice palliative care into the regular care that people are already receiving in their primary care provider’s office, in their home, in long-term care homes, in hospital or in other community settings. How will an integrated palliative approach to care change people’s experience? In John’s case, an integrated palliative approach would mean In Mary’s case, an integrated palliative that someone on his cardiac care or primary care team would approach to care would mean having an in- talk to him frankly about his illness and the uncertainty of his depth pain assessment and being given prognosis. His medical treatment would be optimized to control treatments and strategies to relieve pain. It his symptoms. He would be taught a variety of techniques to would also mean having a meeting with her help him manage his breathing, diet, energy and stress. He care team and family to discuss her would be asked about his preferences for treatment. Based on concerns and wishes for ongoing that discussion, he might choose to be treated for any reversible treatment. Mary would develop an advance problems, such as pneumonia or other infections, but not to care plan that would instruct her physician have CPR or intubation. The team would then help him and her family that, no matter what, she communicate his wishes to his family. didn’t want dialysis again. An integrated palliative approach to care recognizes that a healthcare system focused on curing or treating specific illnesses sometimes “forgets” to care for the whole person. The palliative approach is not delayed until the end stages of an illness but is offered early to provide active comfort-focused care and reduce suffering. It also promotes understanding of loss and bereavement. (Adapted from iPANEL, 2012) I. A Case for an Integrated Palliative Approach to Care 11  An integrated palliative approach to care become the main goal of care and the acknowledges that most people want to person may reject treatments that will be truly informed about their illness and cause pain or require hospitalization. prognosis, and to have an opportunity to (Gillick, 2005) talk openly about their health, their hopes An integrated palliative approach to care and fears, and about the possibility of also recognizes that, when the care team dying. An integrated palliative approach is focused on treating an illness rather to care ensures that people are asked than the whole person, then pain and about their care goals and preferences, other symptoms (including those related and encouraged to revisit those goals and to treatments) may not be managed as discuss how they may change over time. well as they could be, especially as the For example, early in the disease illness progresses and the person trajectory, the person’s main goal is experiences more complications. usually to prolong life. He or she is often willing to give up some function and An integrated palliative approach gives tolerate some pain for a chance to live people the opportunity to discuss their longer. As time goes on, maintaining care goals and preferences early and functions such as mobility or cognitive often, and helps them manage symptoms ability may become more important. As and receive care in the setting of their the condition progresses, comfort may choice. 12 i. a case for an integrated palliative approach to care II. About an Integrated Palliative Approach to Care The World Health Organization defines hospice palliative care as: an approach that improves the quality of life of patients and their families facing the problems associated with life- threatening 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. Hospice palliative care engages individuals and their families in planning for the care they Palliative Care: want at different stages in their illness based provides relief from pain and other on their own goals and values and on a clear distressing symptoms throughout the understanding of their prognosis and duration of an illness; treatment options (advance care planning). affirms life and regards dying as a normal When people have access to palliative care process; services integrated with their other care, they report fewer symptoms, better quality of life, neither hastens nor prolongs death; and greater satisfaction with their care. The integrates the psychological and spiritual healthcare system reports more appropriate aspects of patient care; referrals, better use of hospice care, fewer offers a support system to help patients emergency room visits and hospitalizations, live as actively as possible until death; and less use of ineffective intensive offers a support system to help the family interventions in the last days of life. cope during the patient’s illness and throughout their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counseling; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of the illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage distressing clinical complications. (World Health Organization, 2013) II. About an Integrated Palliative Approach to Care 13  An integrated palliative approach to care focuses on meeting a person’s and family’s full range of needs – physical, psychosocial and spiritual – at all stages of a chronic illness. It reinforces the person’s autonomy and right to be actively involved in his or her own care, and strives to give individuals and families a greater sense of control. It changes the understanding of hospice palliative care from a service offered to dying persons when treatment is no longer effective to an approach to care that can enhance their quality of life throughout the course of their illness or the process of aging. What is an Integrated Palliative Approach to Care? An integrated palliative approach to care makes key aspects of palliative care available to individuals and families at appropriate times in their lives or during an illness and in all care settings. For example, when an older person begins to become frail or when someone is diagnosed with a chronic condition, the person and family would receive: open and sensitive communication about the person’s prognosis and illness trajectory, including any changes they may have to make in their lives, such as limiting As the person becomes more frail or the certain activities; illness progresses (a process that may take years), the person and family would receive: advance care planning, including discussing the range of treatments regular opportunities to review the available as well as their benefits and risks, person’s goals of care and adjust care setting goals of care, and establishing a strategies to reflect any changes in those substitute decision maker; goals; psychosocial and spiritual support for ongoing psychosocial support; both the person and his or her family pain and symptom management; members/caregivers to help them if they referrals to expert hospice palliative care are struggling with any issues or losses services if required to help them cope with related to the illness; challenging physical, psychosocial, or pain or symptom management that may spiritual symptoms, conflicts over goals of be required. care or decision making, or family distress. 14 II. About an Integrated Palliative Approach to Care Where will an Integrated Palliative Approach be Provided? Since an integrated palliative approach is By offering this approach in all settings a way of providing care and not a within the community, we can provide specialized set of services, it can be better care for people and their families provided in all settings in the community throughout the many transitions where the person lives or is receiving associated with chronic conditions such as care, including in the primary care lung, kidney and heart diseases, dementia provider’s office, at home, in long-term and some cancers. care facilities, in hospitals, and in shelters and prisons. An integrated palliative approach can be provided in urban, rural and remote settings, including Aboriginal communities. An integrated palliative approach can be provided in urban, rural and remote settings, including Aboriginal communities. II. About an Integrated Palliative Approach to Care 15  Who will Provide an Integrated Palliative Approach to Care? with and for Canada’s First Peoples, care teams will include community resource people, Elders and cultural advisors as fully recognized members of the care team. An integrated palliative approach to care is a shared-care model. Expert palliative care teams based in residential hospices, hospital palliative care units or in the community support local care teams and share the care. The role of the expert palliative care team may vary in each The same practitioners providing the jurisdiction depending on the extent to person’s care now – including primary care which the palliative approach to care has physicians and nurses, home care nurses, been integrated into care settings in the personal support workers, long-term care community. For example, in communities staff, hospital staff and the people or regions that are just beginning to responsible for healthcare in shelters and implement an integrated palliative prisons – will provide an integrated approach to care, these teams may palliative approach to care in their continue to provide a significant amount of communities. To ensure culturally- palliative care, even for people who do not responsive services when providing care have complex needs. As a community Some elements of palliative care, such as aligning treatment with a patient’s goals and basic symptom management, should be routine aspects of care delivered by any practitioner. Other skills are more complex and take years of training to learn and apply, such as negotiating a difficult family meeting, addressing veiled existential stress and managing refractory symptoms. (Quill & Abernethy, 2013) 16 II. About an Integrated Palliative Approach to Care In an integrated palliative approach to care, expert hospice palliative care teams take the lead only when people have complex, intensive or tertiary end-of-life needs; such as heart failure, respiratory illness, dementia or severe symptom issues, and when normal medical management has not been able to relieve symptoms. develops an integrated palliative psychosocial or spiritual symptoms, approach and more primary care conflicts over goals of care or decision providers in different settings have the making, or family distress; confidence and skills to integrate in some cases, taking over a person’s palliative services into their patients’ care, care if he or she has to transition to a the expert team will shift to more of a residential hospice or hospital palliative shared-care role, which can include: care unit (particularly if the family educating providers; physician is not able to continue to assessing individuals and referring them provide care in those settings). When this to the setting that best meets their transition does occur, the expert needs and preferences; palliative care team ensures the primary providers are kept informed about the being available to consult and provide person’s care and progress and are able advice to primary and community care to resume responsibility for the person’s providers; care if his or her condition stabilizes and providing on-call, after-hours or the person can be discharged back home weekend services to reduce the burden or into long-term care. on primary care providers; sharing the care for people and families who face challenging physical, The same practitioners providing the person’s care now will provide an integrated palliative approach to care in their communities or settings of care – whether in primary care, home care, long-term care or other. II. About an Integrated Palliative Approach to Care 17  The following diagram illustrates how a palliative approach to care can be integrated into the management of chronic progressive diseases. It shows how different aspects of palliative care can be incorporated at different stages of the illness. REHABILITATION REHABILIT TATION T ON SURVIVOR RSHIP SURVIVORSHIP Dissease Disease Management Maanagem agementt PAIN PAIN AND SYMPTOM PTOM MANAGEMENT MANAGEM MENT Palliative liative e Care Care HOSPICE PALLIATIVE PALLIA ATIVE CARE UNIT BEREA AVEMENT VEM MENT BEREAVEMENT END-OF-LIFE-CARE END-OF-LIFE-C CARE Philippa pp H. H Hawley Hawley, y, “The Bow Ti Tie ie Model of 21st Centu Century ryy Palliative Car Care,” e,” Journal Journal of Pain and Symptom Sympto y p om Management g 47, no. 1 (January 2014): 2-5. Why Adopt an Integrated Palliative Approach to Care? An integrated palliative approach to care is and support they need to make informed a cost-effective way to close a gap in care decisions about their care. Although we and meet the increasingly complex health have treatments for many progressive and psychosocial needs of Canadians and illnesses, these illnesses cannot be cured. their families within their communities. It is An integrated palliative approach care that looks at the whole person. It recognizes that, faced with progressive improves health and quality of life for diseases, people’s goals of care may people who are aging, frail or have a change over time. It gives them the chronic illness, gives people a greater sense opportunity to discuss their values and of control over their lives and care, and wishes earlier and more frequently so they makes more effective use of health have a greater sense of control. resources – including the small number of Seamless Transitions palliative care experts in Canada. When the palliative approach is More Autonomy and Control integrated into all care settings within the An integrated palliative approach works community, people will receive consistent because it gives people the information seamless care even when they have to 18 II. About an Integrated Palliative Approach to Care Canada is not the only jurisdiction exploring the potential of this approach to care. In its report, Approaching Death, the US Institute of Medicine proposed a mixed management model that allows for active, life-prolonging treatment and hospice palliative care to occur in parallel in order to provide comprehensive care throughout the illness and dying experience rather than only at the end. (Glare &Virik, 2001) The World Health Organization has also called for palliative care to be integrated across disease trajectories and settings. (World Health Organization, 2007) move from one setting to another. Their advance care plan and their goals of care will travel with In one study with people with them, and their wishes will be respected in all care ALS, participants who settings. Seamless transitions are particularly received an integrated important for Canada’s First Peoples, who may have to move from one jurisdiction to another in palliative approach to care the course of their care (i.e., from the federal had a 30% decrease in health system to a provincial health system). When there is effective communication between mortality compared to those jurisdictions – that is, when the person’s care plan who received usual care. and goals of care travel with them, and Elders and cultural advisors are recognized members of their They also reported better care teams – then there will be less fragmentation function and mobility, less and more coordinated care. deformity and greater Better Health Outcomes A series of studies with people living with a range comfort and quality of life. of chronic illnesses, including amyotrophic lateral (Mayadev et al, 2008) sclerosis (ALS), congestive heart failure, chronic obstructive pulmonary disease, multiple sclerosis People with cancer who and some forms of cancer, found that an received integrated palliative integrated palliative approach to care led to better outcomes for individuals and their family care were less likely to die in caregivers, including fewer symptoms, better the year after enrolling in the quality of life, and greater patient satisfaction. (Bakitas et al., 2009; Temel et al., 2010; Meyers et study. They also reported al., 2011; Smith et al., 2012) better quality of life and An integrated palliative approach to care was also mood. (Bakitas et al., 2009) associated with positive effects on emotional II. About an Integrated Palliative Approach to Care 19  wellness, less suffering, and greater longevity. An integrated palliative approach to care offers In some cases, people who receive an a viable alternative. It has the potential to integrated palliative approach to care lived transform the healthcare system because it longer while using fewer services. (Bakitas et results in: al., 2009) less burden on caregivers; Better use of Resources more appropriate referral to and use of An integrated palliative approach to care is hospice palliative care services; urgently needed for people with chronic more efficient use of the small number of conditions and for the healthcare system. Over palliative care experts in Canada; the next 20 years, our healthcare system will fewer emergency room visits and hospital face a tidal wave of aging Canadians, many of stays; whom will have chronic conditions. In 2007, reduced use of intensive care services. (Lussier et al, 2011) 37% of Canadians reported they had been diagnosed with at least one chronic condition, In a Kaiser Permanente study in the United while 41% of seniors had two or more chronic States, individuals who received palliative care conditions. These illnesses accounted for 70% services integrated with other care had fewer of all deaths. (Statistics Canada, 2001) intensive care unit stays and lower health costs: a net cost saving of $4,855 per patient. (Gade Although Canadians can die at any age, the et al, 2008). We have seen similar economic average age of death in Canada is 74. With the impacts in Canada. A study by the Niagara aging of our population, the number of West End-of-Life Shared-Care Project found Canadians dying each year will increase 40% that providing enhanced palliative care team- by 2026 to 330,000 and 65% by 2036 to more based homemaking and nursing services for than 425,000. (Statistics Canada, 2001) 95 people in rural Ontario dying at home with Although most Canadians say they would illnesses such as cancer, heart disease, and prefer to die at home surrounded by their chronic obstructive pulmonary disease cost loved ones, almost seven of 10 die in hospital $117.95 a day (Klinger et al., 2013) – – many of them in intensive care. (CHPCA, significantly less than $1,100 cost per day for 2012) hospital care in Ontario. (CIHI, 2011) Expensive invasive procedures in the last year of life account for about 18% of Canadians’ lifetime healthcare costs – and these procedures often do not prolong life or benefit the patient. Sometimes they cause more suffering and hasten death. If we do not find better ways to provide care, the financial, social and human implications will be overwhelming. (Fowler, 2013) 20 ii. about an integrated palliative approach to care III. The National Framework An integrated palliative approach to care will vary in different parts of the country, depending on needs, resources, systems and jurisdictions. The models will be driven locally. However, the National Framework can be used to guide implementation of an integrated palliative approach and adapted to meet local needs. VISION quality of life throughout the course of All people in Canada who are aging their illness and, at the same time, the and/or have chronic conditions will opportunity to prepare for death by receive the benefits of an integrated talking about the kind of life and care palliative approach to care. they want. Autonomy and Respect. People who are GOALS OF AN INTeGRATed aging or who are diagnosed with chronic PALLIATIVe APROACH TO CARe illnesses have the right to be actively 1. Canadians will talk with their care involved in their own care plan and to providers about advance care planning, have a sense of control over their and discuss their wishes early and often as healthcare decisions. They are treated their illness progresses or as they age. with respect and given all the information 2. People who are aging, frail and/or have about their health, the expected course of chronic illnesses will receive palliative care frailty or disease, their treatment options, services integrated with their other care in including their likely outcomes and side the setting of their choice. effects, and the services available to 3. People who are aging, frail and/or have them. They have the opportunity to talk chronic illnesses will receive consistent, about their health and the possibility of seamless integrated care if/when they dying, to identify their preferred setting must change care settings. of care, and to develop care plans that align with their values. They also have the PRINCIPLeS opportunity to change their plans as their dying is Part of Living. Dying is an care goals change. integral part of living. The healthcare Person and Family1 driven Care. When system acknowledges that people with someone is becoming frail or is diagnosed chronic illnesses are both living and dying with a chronic illness, that person’s health with those illnesses. It provides issues affect at least five other people. opportunities for them to have good 1 The term family includes people the person has chosen to assist with his/her care. It denotes a group of individuals with a continuing legal, genetic and/or emotional relationship to the person. III. The National Framework 21  (CHPCA, 2014) In most cases, family approach to care is best provided in the members assume an increasing community by an inter-professional team, proportion of the person’s care over time which includes the person, family caregivers and the need for care can continue for and healthcare providers, supported by years. To recognize the impact of illness, expert hospice palliative care teams. an integrated palliative approach is both equitable Access to Health Services. All person and family driven. Services are people in Canada who are aging or who sensitive to the individual’s and family’s have a chronic illness have equitable access personal, cultural and religious values, to an integrated palliative approach to care, beliefs, and practices. An integrated regardless of where they live, their care palliative approach also takes into setting, their race or culture, and their account the burden that different economic status. treatment options place on families as effective use of Health Resources. The well as their capacity to assume that healthcare system is accountable for the burden. effective use of its resources. An integrated Integrated, Holistic Care. High quality palliative approach to care helps identify care for people who are frail or who have and respond to people’s physical, a chronic illness includes regular holistic psychosocial and emotional needs early, assessment of their physical, psychosocial, and avoids costly, ineffective measures at and emotional needs – as well as the the end of life. integrated palliative services to meet those needs. An integrated palliative THe BeNeFITS OF THe NATIONAL FRAMewORk Increases awareness of an integrated palliative approach to care. Reinforces that dying is part of living. encourages consistency across the country, so all Canadians have equitable access to an integrated palliative approach and can benefit from the services. Helps ensure seamless transitions of care across all settings. Builds on existing strengths. Across Canada, many programs are already using an integrated palliative approach. Driven by a desire to fill gaps in care, these programs have improved training for health professionals, developed models of shared care and reduced hospital stays. The national framework builds on and shares the strategies that these programs used to change care. 22 III. The National Framework Desired Outcomes People in Canada have care and support that respect their values and preferences, and are able to enjoy optimal health/wellness until the end of life. As communities and a society, we are more aware and accepting of frailty, disease, and dying as part of life. We are more able to discuss loss and death, and to provide care and support for people who are aging or coping with chronic conditions. We have a clear common understanding of an integrated palliative approach to care. Healthcare providers in all settings are skilled in integrating the palliative approach into people’s ongoing regular care. Providing an integrated We have a standard set of relevant measures palliative approach to care in and tools to assess whether people are all settings of care will receiving an integrated palliative approach to care and its impact on their health and require a significant change well-being, care experience and use of in healthcare culture and health services. The same measures are also used to set benchmarks and assess progress practice – as well as a in achieving our goals across communities, broader social change in sectors, regions and provinces and Canadians’ attitudes towards territories. dying. We are more able to discuss loss and death, and to provide care and support for people who are aging or coping with chronic conditions. III. The National Framework 23  Our Roadmap Achieving these outcomes means a shift in 1. Promote a Culture Shift healthcare practice and culture. Integrating 2. establish Common Language and the palliative approach asks practitioners, Terminology that supports dying as part of organizations, communities and health living systems to think differently about how we care for people who are aging or have chronic 3. educate and Support Providers diseases. 4. engage Canadians in Advance Care This roadmap was developed in consultation Planning with people who are aging or have a chronic 5. Create Caring Communities illness and with practitioners working in primary care, chronic disease, home care, 6. Adapt an Integrated Palliative Approach to long-term care and hospitals. When we asked Provide Culturally-Safe Care, including with individuals and organizations across the and for Canada’s First Peoples country what would have to happen to shift 7. develop Outcome Measures and Monitor the system, they identified seven critical steps: the Change 1. Promote a Culture Shift comfortable talking about death, such as Loss and death are part of life, yet we spiritual leaders and funeral directors, and enlist continue to be a death-denying society. The the support of patient advocacy organizations, current single-minded focus on cure and our such as the Alzheimer’s Society, Canadian fear of dying create barriers to holistic, Cancer Society, the ALS Society, and the Heart & person-centred care. To integrate the Stroke Foundation. These conversations should palliative approach into routine care for start early. If families are able to talk about loss people who are aging or have chronic and death with their children, those young illnesses, we must shift attitudes – in the people will grow up understanding that death is healthcare system and within society at large. part of life. As we start these conversations, we In all parts of the healthcare system and all must recognize that different cultures take parts of society, we must start the different approaches to loss and death. conversation about how loss, dying and To shift attitudes within the healthcare system, death are part of life. we must educate and support healthcare To engage Canadian society in these providers to help them overcome their own fear discussions, we must use all types of media, of loss, dying, and death. An integrated including social media and story-telling. We palliative approach to care should be part of all must find champions who are already healthcare providers’ education. In the We know these actions are doable because they are already happening across the country. 24 III. The National Framework workplace, we must promote best practices in discussions with their patients about advance an integrated palliative approach to care and care planning – early and often. ensure that practitioners have the resources they need to provide that care and to have 2. establish a Common Language As part of The Way Forward initiative, we Words are important. An integrated palliative assembled a Lexicon of Terms related to an approach to care is still new and not well integrated palliative approach to care that can understood. For many people – including form the basis for more discussion about a many healthcare providers – the word common language. To have that language “palliative” is associated with the last days or adopted and used, we must engage people and weeks of life. How does an integrated organizations across the country in an ongoing palliative approach differ from palliative care? process to identify the right words and integrate To ensure a common understanding across them into education and practice. A number of the country, we need a common language provinces and organizations have already started and clearly defined terms. The words we use this work. We must also be quick to address any must embody dignity, compassion and misperceptions about what the words mean. empathy, as well as respect for different cultural attitudes towards dying. 3. educate and Support Providers This kind of shift requires changes to healthcare To achieve our goals, practitioners in all care provider education. It also requires champions in settings – including primary care practices, all practice settings and in all health professions, chronic disease programs, home care, long- as well as tools and resources. To reach term care, hospitals, prisons and shelters – healthcare providers, we must leverage existing must have the skills and competencies to training initiatives, such as the Educating Future integrate the palliative approach into routine Physicians in Palliative and End-of-Life Care care. To develop those skills, they must (EFPPEC) program, the Learning Essential examine their own fears and attitudes about Approaches to Palliative and End-of-Life Care loss, dying and death and come to terms with (LEAP) program for physicians, as well as their own mortality. They must be able to talk national competencies in palliative care for easily about death and dying. They must also nurses and social workers led by professionals be able to recognize: when a singular focus and educators in these fields, and adapt them to on treating or curing patients is no longer the focus on an integrated palliative approach to best thing for their health and well-being; care. We must make innovative use of different when they can provide integrated palliative tools to reach providers, including social media care themselves; and when to consult with and story-telling videos. The skills and expert hospice palliative care teams or refer competencies to provide an integrated palliative patients and families to more specialized approach to care should be a requirement for services. registration and accreditation. III. The National Framework 25  4. engage Canadians in Ongoing In 2011, the CHPCA in collaboration with Health Advance Care Planning Canada released the Speak Up! toolkit as part of The Way Forward Initiative focused mainly on the larger Advance Care Planning Initiative in integrating the palliative approach into care Canada. Several provinces, such as BC, currently for people who are aging or who have chronic actively promote advance care planning. conditions. However, a truly integrated However more must be done to engage palliative approach to care should actually Canadians in ongoing advance care planning. start much earlier – before people become Once again, we need champions at every level in frail or ill – with a strong focus on advance the healthcare system, in patient advocacy care planning. organizations and in the legal, financial and estate planning world. We can use the Speak Advance care planning – the conversations Up! Toolkit. We can also learn from jurisdictions about what people value and the kind of care where a high proportion of people have an they want – should begin when they are well, advance care plan. and then continue throughout their lives. It should be grounded in a person-centred, As part of the conversation about an integrated holistic approach and empower people. By palliative approach to care, we must talk about talking openly and often about their health advance care planning – using all types of and treatment options, people become more communication channels, from social media to involved in their care and better able to make public forums. In those conversations, we must informed decisions. reinforce that advance care planning is an ongoing process – not a one-time discussion. Advance care planning involves thinking about the kind of care you want, talking about it with others and documenting your wishes in an advance care plan. 26 III. The National Framework Conversation Starters for Healthcare Providers What do you understand about your illness or what’s happening to you? Do you have a living will, advance directive, or advance care plan? Do you know what I mean by those terms? If we need to make decisions about your care and you were unable to speak for yourself, whom would you want me to speak to about your care? Have you talked to anyone about your wishes or preferences for healthcare decisions that may come up (e.g., resuscitation)? May I ask what you discussed? What is important to you as you think about this topic? Do you have the information you need to make decisions about the kinds of treatments you do or do not want if you become very sick with a life-threatening illness? From Speak Up! Just Ask: Talking to Patients and Families About Advance Care Planning 5. Create Caring Communities need some help and support. It will be up to With an integrated palliative approach to local healthcare organizations to identify care, most people in Canada will receive the families, populations and/or communities that palliative services they need - such as open may struggle to fulfill this role. It is also up to and sensitive communication about their provincial/territorial and regional health system prognosis, advance care planning, planners to work with local healthcare providers psychosocial and spiritual support, and pain to provide the support required. or symptom management – from their current providers in the settings where they receive care, such as primary care practices, chronic disease management programs, home care and long-term care homes. Only the small proportion of people with complex needs will require expert hospice palliative care services. While some of the services will be provided by professional healthcare providers, some will be provided by family caregivers and Most communities are volunteers. All parts of the community will be ready, willing and able involved in creating caring environments that to take on this role, but can provide an integrated palliative approach to care. Most communities are ready, willing some may need help and able to take on this role, but some may and support. III. The National Framework 27  6. Adapt an Integrated Palliative Approach to Care with and for Canada’s First Peoples In implementing an integrated palliative wanda had been living with diabetes and heart approach to care, we must include disease for a number of years. Her care was managed approaches that reflect the unique needs, mainly by the community health workers in her First diversity and jurisdictional realities of Nations community, with some support from fly-in Canada’s First Peoples, particularly in the physicians and a hospital that was several hundred rural, remote and isolated regions of Canada miles away. When her condition worsened and could where most reside. (Kelly L, 2009) no longer be managed in the community, she was sent to the hospital where she was diagnosed with The Constitution of Canada recognizes three end-stage heart failure. Far from home and family, groups of Aboriginal Peoples – First Nations, Wanda felt anxious and ill at ease. The care team at Inuit, and Métis – each with unique heritages, the hospital provided treatment and tried to have languages, cultural practices, and spiritual conversations with her about side effects of beliefs. Both among and within these treatment, quality of life, loss of independence, and populations, there is broad diversity as well as the impact of worsening symptoms. However, Wanda shared experiences and challenges that must felt overwhelmed by the information. She asked for be considered when adapting an integrated an elder to help her understand, but the hospital did palliative approach to care for Canada’s First not have one on the care team. When her family did Peoples. come to visit, they expected to stay the whole day and to have music and a traditional ceremony, but the For example, more than 50 percent of room in the hospital wasn’t large enough to Canada’s 1.4 million First Nations, Inuit and accommodate everyone. The family felt rushed and Métis live in rural, remote or isolated frustrated, while the hospital staff and other patients communities, and studies show that health complained about the crowd and the noise, especially status declines with distance from urban after visiting hours. In spite of her treatment, Wanda centers. (Saint Elizabeth Foundation) There is continued to experience a lot of pain and struggled a need, therefore, to develop comprehensive, to breathe even when lying in bed. Without the help integrated and affordable ways to deliver an of a family member or interpreter, she had trouble integrated palliative approach that work in communicating her needs to the team members who rural and remote areas. First Nations, Inuit and continued to focus on treating the heart failure Métis in Canada experience a without giving a lot of attention to her pain and other disproportionate burden of ill health symptoms or her socio-cultural and spiritual needs. (Castleden et al., 2010) and factors such as Despite the fact that Wanda was deteriorating, lower incomes, inadequate housing, and the nothing was said to the family about her possible legacy of the residential school era have a death. When she did die, family members felt that strong influence on their health. (Saint they had been given false hope and not treated with Elizabeth Foundation) At the same time, their respect. Even after her death, the hospital struggled populations are growing rapidly, and there is to provide culturally safe care. In Aboriginal culture, an urgent need to improve their quality of the body is not moved until all the family has come living, including enhancing access to culturally and the body is arranged in a certain way. However, appropriate, integrated palliative care leaving her body in the hospital bed for several hours services. (Castleden et al, 2010) would have contravened hospital policy. 28 III. The National Framework Most First Peoples prefer to pass away in their home community and not in a hospital far from family and friends where there may be language barriers or a lack of cultural safety. However, communities often have limited resources to provide care for people nearing the end of life. The federal government plays a significant role in the delivery of health services and the provision of extended health benefits for some First Peoples of Canada. Under Health Canada’s First Nations and Inuit Home and Community Care Program, palliative care is considered “supportive” care so there is no funding specifically allocated for these services. For many of Canada’s First Peoples, the fragmentation between federal and provincial health jurisdictions and health services makes it difficult to coordinate health services and follow-up. To Recognize Canada’s First Peoples as partners in adapt an integrated palliative approach to care their care: ensure that models of care do not for Canada’s First Peoples and provide seamless see Canada’s First Peoples as solely recipients services, it is essential to understand and of care, but as true partners in the manage these jurisdictional issues. development and delivery of their care; In terms of strengths, First Nations, Inuit and Engage local leaders, including community Métis in Canada are increasingly involved in resource people, Elders and cultural advisors as full recognized members of the healthcare healthcare systems as care providers, in local and team at all levels, and build on their knowledge regional healthcare systems, in health authorities to ensure culturally appropriate models of care and in governments. They are innovators in and manage potential “professional bias”; developing new and effective healthcare solutions. They are also able to contribute best Use a community-based development process practices in cultural competence at all levels – as to enhance local capacity: start by ensuring all relevant structural elements are in place and care providers, on care teams, within coordinated, and then develop local care organizations, in governance and in program models, based on needs, using a process that and policy related practices. In fact, several works for each setting and leveraging regional programs in Canada and abroad have developed and provincial/territorial capacity as needed; innovative community-driven and nation-based approaches, building on the contributions and Develop culturally-safe, holistic tools and resources (e.g., assessment tools) that include ingenuity of First Peoples. physical, emotional, spiritual and intellectual When adapting an integrated palliative aspects of health and well-being within a family approach to care with and for Aboriginal and community context: ensure flexible and Canadians, healthcare systems and providers timely access to these tools and resources. should take several key steps: III. The National Framework 29  7. develop Outcome Measures and The Way Forward reviewed measures (both Monitor the Change health and social measures of quality of life) used To determine whether we are successful in to monitor progress in palliative care across the providing an integrated palliative approach to country. In many cases, health systems and care, we need specific measurable goals to organizations may already be gathering data on drive the system-wide shift in practice, as well these measures that can be used to assess the as ways to monitor changes and identify impact of an integrated palliative approach to barriers to change. In addition to measuring care (e.g., through tools such as InterRAI whether palliative services are being Community Health (CHA) Assessment Form, the integrated into routine care, we want to Palliative Performance Scale, and the Palliative measure the impact of those services on Outcomes Scale). people, on providers and on the healthcare Some of the measures can eventually be used to system. set standards for an integrated palliative Are people who are elderly or have a approach to care. Champions in each sector can chronic condition more satisfied with their then work to integrate the standards into care? practice. With appropriate measures, we could Do they have a plan of care? document effective programs and share best practices and lessons learned. Do they have a greater sense of control and more support in making their care decisions? Are they enjoying better quality of life? Are providers more satisfied with the care they provide? Did they have ongoing conversations with people about their prognosis and their choices? Do providers find it easier to communicate with patients or clients? Are people able to receive care in the setting of their choice? The Way Forward Is the system seeing less use of hospital and reviewed measures being emergency services in the last weeks or used to monitor progress months of life? in palliative care across Are people receiving fewer unnecessary interventions near end of life? the country. 30 III. The National Framework IV. The Framework in Action on the Front Lines Shifting the healthcare system from its current Establishing a shared vision and goals, and a singular focus on treating illness to an common understanding (language) of the integrated palliative approach to care in the palliative approach to care; community requires action at all levels and Setting clear expectations for all providers within all sectors and settings. and staff and how their practice should change; If people who are frail or have a chronic illness and their families are going to receive the care Providing ongoing education so staff develop they need in the setting of their choice, then the competencies to integrate the palliative all parts of the healthcare system must create approach with the other care they provide and the conditions that support the shift to an to provide culturally sensitive care; integrated palliative approach to care in the Developing tools and guidelines that help community. providers integrate the palliative approach to care, including assessment tools that help Ideally, the shift to an integrated palliative providers in each setting identify the clients, approach to care will happen at all levels in the residents or patients who would benefit from healthcare system - the federal, an integrated palliative approach to care; provincial/territorial or regional health Forging strong relationships with other planning levels, including regions where First services and settings that can help deliver Nation, Inuit and Métis peoples are certain palliative services and/or ensure responsible for directing, managing and seamless transitions for individuals and their delivering a range of health services, and at families if they have to move between the local or care setting level. settings; However, front-line organizations do not Communicating clearly with healthcare need to wait for federal, provincial/ providers, the public and patients about the territorial or regional action. An integrated palliative approach to care and how it can palliative approach can start anywhere – and enhance quality of life as well as both living should start everywhere – in the system. and dying; At all levels and in all settings, it is possible to Being accountable for the quality and impact of this shift in practice by tracking and create the conditions that support the shift to monitoring that individuals and families have an integrated palliative approach to care in the equitable access to an integrated palliative community. Creating these conditions involves approach to care and assessing the impact of certain key activities, including: that care on their health and well-being, on Developing policies that help shape their satisfaction with care, on provider organizational culture and actively promote satisfaction, on the organization and on the an integrated palliative approach to care; use of other health services. IV. The Framework in Action on the Front Lines 31  The End-of-Life Care Federal, Provincial and Strategy for England Territorial Governments: (2008) guides care and mandates the use of Develop Policies and programs such as the Support the System Gold Standards Leadership can come from the governments that plan, fund Framework and the and manage healthcare systems. The federal, provincial and territorial governments2 are all critical partners in the Liverpool Care Pathway framework for action. Strong leadership can also come from for the Dying Patient. Canada’s First Peoples, who are increasingly taking greater control over healthcare services in their communities, as Australia has illustrated most recently by the historic transfer of all Health Canada programs and services to B.C. First Nations (via the developed a national new First Nations Health Authority). palliative care strategy Many jurisdictions that have made progress in developing an (2010) as well as integrated palliative approach to care have had strong national guidelines for government support for the change. In regions with large indigenous populations, such as New Zealand and Central a palliative approach Australia, local (community-driven) leadership and for aged care in the engagement have been fundamental to their success. community setting The following are the keys actions at this central level: (2011), while the 1. Adapt/adopt the framework’s vision, goals and principles Northern Territory 2. Establish policy expectations for all care settings and Government in providers, such as: Australia—where about All patients will have an advance care plan; 34% of the population All patients will have access to an integrated palliative approach in the setting where they are receiving care; is indigenous—has All settings will have the capacity to provide high quality adapted the national hospice palliative services integrated with other care; strategy for its region More care providers will have the skills to provide an integrated palliative approach to care; in close partnership Specialized palliative care units and hospice residential beds with aboriginal health will be available to individuals with complex symptoms and end-of-life care needs that cannot be managed in other workers and social settings; service organizations. All communities and settings will develop approaches to integrating palliative care that are culturally sensitive and 2 Provincial and territorial governments are responsible for health services for their citizens. In addition, the federal government is also responsible for providing some health services directly: it manages the fifth largest healthcare system in the country, providing healthcare for First Nations and Inuit communities, the Armed Forces, the RCMP, inmates in federal prisons, and veterans. 32 IV. The Framework in Action on the Front Lines  meet local needs, including the needs of The United Kingdom has Canada’s First Peoples; More deaths will occur at home or in other developed the Gold settings where people receive care, such as Standards Framework, a long-term care homes, and fewer will occur in intensive care units. systematic evidence- 3. Develop the tools that communities need to based approach to assess their current capacity to provide an integrated palliative approach to care, to optimize end-of-life care identify any gaps (e.g., knowledge, skills, workforce, training) and to build capacity delivered by generalist such as: patient assessment tools, advance providers and coordinate care planning tools, care plans, information and resources for family caregivers and care across settings. The volunteers). framework is now used to 4. Create legislation/regulations, where required, to ensure all settings are guide education, policies accountable for implementing the policy. and programs across the 5. Establish guidelines and standards of care that are consistent with the national norms of country. It focuses on practice for hospice palliative care (CHPCA, helping providers identify updated 2013) and reflect specific populations’ needs for an integrated people earlier, talk to palliative approach to care. Governments could make these standards a requirement