Our Work

Palliative Care Essentials 1Dr. Long is an experienced speaker, program developer and consultant at local, national, and international levels. Below is a partial list of featured programs and presentations relevant in palliative care across the continuum of care and useful for community-based settings such as home health, hospice, skilled nursing facilities or nursing homes and assisted living facilities. Please see the Palliative Care Essentials Solutions for Education and Training, Program and Evaluation, and Practice and Operations for additional details.

Geriatric Palliative Care

For Professionals and Unlicensed Care Nursing Staff

  • End of Life Nursing Education Consortium (ELNEC) – Geriatric
  • The ELNEC-Geriatric curriculum from the City of Hope and American Associates of Colleges and Nursing features a training or train-the-trainer course in palliative care with special considerations for nurses caring for older adults in community-based settings such as hospices, clinics, home health and long-term care. Used for orientation or continuing staff development; this course targets training for professional and unlicensed nursing staff. This course is also extremely useful for faculty teaching in university or community colleges. Finally, existing healthcare organizations can use these materials for reducing readmissions to hospitals and building strong community alliances. An extensive syllabus includes robust case studies, wide-ranging supplemental teaching materials, patient and family education tools, and a reference list.

  • Culture Change in Nursing Homes: The Palliative Care Approach
  • Building on the End of Life Nursing Education Consortium (ELNEC) – Geriatric, this 8-hour workshop provides administrators and clinicians with the following topics necessary to create culture change in nursing home by integrating the palliative care approach: Why Culture Change is Necessary for Business Survival; Assessing Organizational Capacity to Meet and Deliver Palliative Care in Nursing Home Communities or Skilled Nursing Facilities; End of Life from a Quality and Regulatory Perspective; Creating Opportunities to Promote Palliative Care; Refocusing on What Matters Most to Residents; Metrics that Matter with the Minimum Data Set (MDS); and Creative Ways to Craft Culture Change with a Palliative Care Approach.

  • Home is Where the Heart Is: Integrating Palliative Care in Home Care Settings
  • Building on the End of Life Nursing Education Consortium (ELNEC) – Geriatric, this 8-hour workshop provides administrators and clinicians with the following topics: Maximizing Survival in Home Care with Palliative Care; Assessing Organizational Capacity to Meet and Deliver Palliative Care in the Home; Creating Opportunities to Promote Palliative Care; Refocusing on What Matters Most to Patients; Metrics that Matter with OASIS; Creative Ways to Enhance Organizational Effectiveness through Palliative Care.

  • How to Create a Campaign Against Pain in your Long-Term Care Organization
  • Pain assessment and management remains at the forefront of scrutiny by accrediting and state or federal survey and quality of care entities. This 2 or 4-hour workshop provides an update on evidence-based pain care and moves rapidly into a pain program design that features work groups, focus groups, achieving consensus for change, and sustainability.

    For The Community

  • Peace of Mind™
  • Peace of Mind™ is a 4-hour didactic and experiential program for patients and families who are seriously ill. The educational and open dialogue format focuses on the following topics: The Care Continuum: What Support is Available; Having the Conversation; and Advance Directives.

    Palliative Care for Dementia

    For Professionals and Unlicensed Care Nursing Staff

  • Palliative Care for Advanced Dementia™
  • This 4 or 8-hour course is designed to teach the entire interdisciplinary team about the 10 aspects of comfort care for people in the late-stage of dementia. An extensive syllabus with case studies, supplemental teaching materials, and references is provided. Additional products include: policies and procedures and core competencies for all professionals and direct care staff necessary for proficiency in caring for this population.

    For those interested in a comprehensive assessment of their existing dementia program or for organizational readiness to improve dementia care services (especially in long-term care), the Artifacts of Culture Change for Dementia© is necessary and provides direction for palliative care culture change.

  • The Questionnaire for Palliative Care for Advanced Dementia ©
  • Education and training in care strategies for people in the advanced stage of dementia is daunting for clinicians and researchers. The Questionnaire on Palliative Care for Advanced Dementia (qPAD) is a 2-part instrument that measures long-term care staff knowledge, and beliefs, perceptions and attitudes about palliative and end-of-life care for persons with advanced dementia. Factor analyses of the Knowledge Test (coefficient α = .81) produced 3 factors: Anticipating Needs, Preventing Negative Outcomes, and Insight and Intuition (coefficient α = 75, .73, and .58, respectively), explaining 67% of the total variance. Factor analyses of the Attitude Scale (coefficient α = .83) produced 3 factors: Job Satisfaction, Perceptions and Beliefs, and Work Setting Support of Families (coefficient α = .90, .64, and .67, respectively), explaining 68% of the total variance.

    This tool has been used and is undergoing further testing in the England, Ireland, Australia, Canada, Japan, Taiwan, and Singapore. Contact Dr. Long if you would like a free copy of the instrument for research purposes.

    For The Community

  • Live Well, Leave Well™: When Dementia Hits Home
  • Live Well, Leave Well™ is a 4-hour didactic and experiential program for people and families faced with the diagnosis of dementia. The educational and open dialogue format focuses on the following topics: Dementia: What is It?; Community Resources, and Essential Planning from a palliative care perspective.

    Featured Work Products, Interviews and Press Releases

  • Pain and Dementia. American Hospice Foundation. Written and developed in 2012 by Dr. Long. Secure your copy at:
    https://americanhospice1.files.wordpress.com/2014/05/pain-d-booklet.pdf
  • Palliative Care for Advanced Dementia: My Time “Down Under”. Arizona Nurse 2015, 68(2), 3. See http://nursingald.com/publications/1177
  • Dr. Long is contributor for Visiting Nurse Associations of America release Blueprint for Excellence for Hospice and Palliative Care 2014
    http://www.homehealthnews.org/2014/06/vnaa-releases-next-blueprint-for-excellence-for-hospice-and-palliative-care/
  • Dr. Long is contributor for Visiting Nurse Associations of America Clinical Procedure Manual 19th Edition that features more than 300 procedures for home health and hospice care in paper or digital format.
    http://www.prnewswire.com/news-releases/just-released-vnaas-new-clinical-procedure-manual-features-latest-home-health-and-hospice-best-practices-282401821.html
  • A Must Read! Nursing homes must be innovators. Ageless Voice, May 6, 2013.
    http://agelessvoice.net/558/nursing-homes-must-be-innovators/#more-558
  • Dementia Care Resources:

  • Long, C. O. (2012, December). For the person with dementia. What does pain look like? Care Advocate, (1)2, 1-2. Alzheimer’s Association, New York City Chapter. See http://www.alznyc.org/nyc/careadvocate/novdec2012.asp#.UrNLEd-A2-M
  • Long, C. O. (2012, March-April). For the person with dementia. What does pain look like? Advancing Care Newsletter, 2(2), 1-2. Alzheimer’s Association, New York City Chapter. See http://www.alznyc.org/nyc/advancingcare/marapril2012.asp#.UrNKjN-A2-M
  • Long, C. O. (2012, December). Para la persona dementia, ¿cómo se presenta el dolor? Care Advocate, 1(2), 1-2. Alzheimer’s Association, New York City Chapter. (Published in Spanish). See http://www.alznyc.org/nyc/espanol/pdf/CareAdvocate-December2012-SPA.pdf
  • Learn about Pain and Common Distressful Symptoms. Visiting Nurse Associations of America (VNAA), Blueprint for Best Practices in Home Health, Hospice and Palliative Care, 2014. Available at http://vnaablueprint.org/main-menu.html
  • Contact Carol O. Long, PhD, RN, FPCN, FAAN

    To contact Carol O. Long, PhD, RN, FPCN, FAAN about PCE’s work, send her a message or call 480.893.3685.