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“The National Agenda to Improve Care in Life Threatening Illness”

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www.nationalconsensusproject.org

National Consensus

Project

The Development of Clinical Practice Guidelines for Quality Palliative Care

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National Consensus Project Mission

To create a set of voluntary clinical practice guidelines to guide the growth and expansion of palliative care in the United States

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What is the National Consensus Project?

Consortium of three key national palliative care organizations:

• American Academy of Hospice and Palliative Medicine

• Hospice and Palliative Nurses Association

• National Hospice and Palliative Care Organization 

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Definition of Palliative Care

1. Aims to relieve suffering and to support the best possible quality of life for patients with advanced chronic or life-threatening illnesses and their families.

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Definition of Palliative Care

2. Both a general approach to patient care routinely integrated with disease-modifying therapies, as well as a growing practice specialty for highly trained specialist physicians, nurses, social workers, chaplains and others who work in teams.

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Palliative Care Ensures:

– Physical comfort through state-of-the art, comprehensive management of pain and symptoms

– Practical needs are addressed and coordinated

– Psychosocial and spiritual distress is managed– Patient and family values and decisions are

respected and honored– Opportunities are available for growth and

resolution

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Palliative Care is Important

“The nation is about to experience a great demographic shock. Between 2010 and 2030 the over 65 population will rise over 70 percent.”

The Urban Institute, 1998

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Palliative Care is Important

• Americans:– Increasingly experience chronic

advanced illness– Suffer needlessly– Need support in navigating the health

system • Policy makers:

– Need effective solutions

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Palliative Care is Important

• Health care settings:– challenged to deliver efficient and

effective management of long-term advanced illness

• Clinicians:– Need support and expertise for treating

this growing population

QUALITY CARE TO THOSE WHO MOST NEED IT, WHERE AND WHEN THEY NEED IT

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Where We Are Now• Hospice has created “gold standard” of

care• Hospices are successfully expanding

services to provide palliative care to patients in a variety of settings earlier in the course of illness

• Leading hospitals and long-term care facilities have started palliative care programs

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Where We Need To Go• Expand access for patients and families• Increase number of reliable, high quality

programs• Assure quality

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Need Improved Outcomes• Efficient, effective management of

advanced chronic and life-threatening illness

• Access • Quality, including pain and symptom

control• Smooth transitions and case

management across health care settings

• Reduced variation among programs

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National Consensus Project Structure

Phase I (2002 – 2004)• Steering Committee – 20 members

develop draft document• Advisory Committee – 100 nationally

recognized leaders across a variety of health care settings, review and revise

• Liaison Organizations – 50 organizations with major responsibility for health care of patients with life-threatening illnesses, endorse and disseminate the standards

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National Consensus Project Structure

Phase II (2005 – 2006)• Task Force – 10 members guide

dissemination process • Advisory Committee – 34 national

leaders serve as a link to professional organizations to disseminate the guidelines

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Clinical Practice GuidelinesConsensus of the leading palliative

care organizations in the U.S., based on

1. Scientific evidence2. Clinical experience3. Expert opinion

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Clinical Practice Guidelines• Facilitate development and

improvement of clinical programs, particularly those serving a high proportion of people with acute and chronically progressive conditions

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Clinical Practice Guidelines• In the absence of organized programs

or specialists, guide clinicians to incorporate vital aspects of palliative care into their practice to improve care for their sickest patients, over the course of their illnesses

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Clinical Practice Guidelines• Establish accepted definitions of the

essential elements in specialist palliative care that promote quality, consistency and reliability of services

• Foster continuity of palliative care by expanding access to case management across settings

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NCP Goals1. Build national consensus concerning

the definition, philosophy and principles of palliative care through an open and inclusive process that includes the array of professionals, providers and consumers involved in, and affected by, palliative care

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NCP Goals2. Create voluntary clinical practice

guidelines for palliative care that describe the highest quality services to patients and families

3. Broadly disseminate the clinical practice guidelines to enable existing and future programs to define better their program organization, resource requirements and performance measures

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NCP Goals

4. Help clinicians provide key elements of palliative care in the absence of palliative care programs

5. Promote recognition, stable reimbursement structures and accreditation initiatives through projects such as the National Quality Forum (NQF)

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Clinical Practice Guidelines 8 Domains

1. Structure and Process of Care2. Physical3. Psychological and Psychiatric4. Social5. Spiritual, Religious and Existential6. Cultural7. The Imminently Dying Patient8. Ethics and Law

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Care• Care starts with comprehensive

interdisciplinary assessment of patient and family

• Addresses both identified and expressed needs of patient and family

• Education and training are available • Team is committed to quality

improvement• Emotional impact of work on team

members is addressed• Team has relationship with hospices

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Domain 2: Physical

• Pain, other symptoms and treatment side effects are managed using best practices

• Team documents and communicates treatment alternatives, permitting patient/family to make informed choices

• Family is educated and supported to provide safe/appropriate comfort measures to patient

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Domain 3: Psychological and Psychiatric• Psychological and psychiatric issues are

assessed and managed based on best available evidence

• Team employs pharmacologic, nonpharmacologic and complementary therapies as appropriate

• Grief and bereavement program is available to patients and families

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Domain 4: Social

• Assessment (e.g. Family structure, relationships, medical decision making, finances, sexuality, caregiver availability, access to medications and equipment)

• Individualized, comprehensive care plan alleviates caregiver burden and promotes well-being

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Existential• Assesses and addresses spiritual

concerns• Recognizes and respects religious

beliefs – provides religious support• Makes connections with community and

spiritual/religious groups or individuals as desired by patient/family

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Domain 6: Cultural

• Assesses and aims to meet the culture-specific needs of patients and families

• Respects and accommodates range of language, dietary, habitual and ritual practices of patients and families

• Team has access to/uses translation resources

• Recruitment and hiring practices reflect cultural diversity of community

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Domain 7: The Imminently Dying Patient

• Team recognizes imminence of death and provides appropriate care to patient/family

• As patients decline, team introduces hospice referral option

• Team educates family on signs/symptoms of approaching death in a developmentally-, age- and culturally-appropriate manner

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Domain 8: Ethics and Law

• Patient’s goals, preferences and choices are respected and form basis for plan of care

• Team is aware of and addresses complex ethical issues

• Team is knowledgeable about relevant federal and state statutes and regulations

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Why adopt the Clinical Practice Guidelines?

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Hospitals• Develop quality programs• Efficiency: appropriate use of resources,

decreased hospital and ICU stays, lower costs• Better clinical outcomes: relieves pain and

distressing symptoms in all stages of treatment• Strengthened patient satisfaction: patients get

comfort care without forgoing other treatment• Improved staff retention and morale: supports

doctors/nurses in care of complex patients• Helps meet JCAHO quality and pain

management standards

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Nursing Homes• Improved patient outcomes in accord with

regulations• Meets patient and family needs• Roadmap for caring for patients with chronic

illness• Strengthened patient satisfaction: patients

get comfort care without forgoing other treatment

• Improved staff retention and morale: supports doctors/nurses in care of complex patients

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Health Care Professionals• Promotes optimal, evidence-based care to

your most complex, sick patients without significant workload burden

• Better clinical outcomes: relieves pain and distressing symptoms in all stages of treatment

• Strengthened patient satisfaction: provides the care patients want; improves patient/family health care system experience

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Palliative Care Programs

• Ensures quality care• Guides program development• Ensures highest standards are met• Next step in maturing field

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Policy-makers• Strengthens a health system that serves

our sickest patients• More appropriate use of financial

resources – improved care while lowering costs

• Ensures that all patients and their families, your constituents, receive a uniform and appropriate level of care

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Patients and the Public

• Expert pain and/or symptom relief; helps end needless suffering

• Everybody has a right to the best quality care

• Assistance in navigating the medical system and choosing health care providers

• Guidelines are based on years of research into best care for seriously ill patients

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National Consensus Project Outcomes

The widespread adoption of these guidelines in the U.S. will encourage a level of consistency, comprehensiveness and quality that patients and families can come to expect whatever their diagnosis, wherever they live, regardless of the setting of care.

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What more can you do?• Health care organizations: Use

the guidelines to start a palliative care program for efficient, effective management of your sickest patients

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What more can you do?• Clinicians: Ask for a palliative

care program applying these guidelines in support of your care; or, in the absence of a program, use standards to provide core elements to care of sickest patients

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What more can you do?• Palliative care advocates:

Champion adoption and use of guidelines in your organization & field and share with colleagues

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What more can you do?• Policy-makers: Create incentives

for health care organizations and providers to adopt and practice clinical practice guidelines

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What more can you do?• Patients and families: Choose

health care organizations and providers who have adopted clinical practice guidelines, and ask for a palliative care consult when you are facing advanced chronic or life-threatening illness

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National Consensus Project Voluntary Clinical Practice

Guidelines for Quality Palliative Care

For more information:www.nationalconsensusproject.org