International Association for Hospice & Palliative Care

International Association for Hospice & Palliative Care

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Clinical Updates in Palliative Care

Nessa Coyle PhD, NP

Sloan-Kettering Cancer Center, New York



Tools for the assessment of pain in the severely cognitively impaired adult and two different, but complementary, palliative care practice guidelines.


Review of tools for the assessment of pain in the severely cognitively impaired 


Assessing pain in the severely cognitively impaired is a constant challenge. In May of this year Dr Keela Herr and colleagues from the University of Iowa made a major contribution to this effort, by posting a “State of the Art Review of Tools for the Assessment of Pain in the Severely Cognitively Impaired” on the City of Hope website in their section on pain in the elderly (http://www.cityofhope/prc/elderly.asp).


The review which preceded this posting had two aims: (1) to identify and evaluate existing tools for assessment of pain in nonverbal elders and (2) to prepare and make readily available evaluations of each tool including conceptualization, subjects/setting, reliability and validity, administration and scoring, and a summary of the strengths and weaknesses. The documents included in this website are: project overview, criteria for evaluation of pain assessment tools, comparison grid of pain assessment tools rated on evaluation criteria, comparison of tool items with the American Geriatric Society 2002 persistent pain guidelines, and review references. An individual folder for each tool contains: an in-depth evaluation of each tool, a brief summary evaluation of each tool, a copy of each tool for which permission was obtained to post, and contact information for accessing permission to use each tool.


Seven tools were evaluated: The Abbey Pain Scale (Abbey), (Abbey J., et al.,2004); The Assessment of Discomfort in Dementia (ADD) Protocol, (Kovach CR., et al., 1999); Checklist of Nonverbal Pain Indicators (CNPI), (Feldt K., 1996); The Discomfort Scale-Dementia of the Alzheimer’s Type (DS-DAT), (Hurley A., et al., 1992); The Doloplus 2, (Wary B., and the Doloplus Group, 2001); The Face, Legs Activity, Cry and Consolability Pain Assessment Tool (the FLACVC), (Merkel SI et al., 1997); Nursing Assistant-Administration Instrument to Assess Pain in the Demented Individuals (NOPAIN), (Snow AL., et al., 2001); The Pain Assessment Scale for Seniors with Severe Dementia (PACSLAC), (Fuchs-Lacelle SK., et al., 2004); Pain Assessment for the Dementing Elderly (PADE), (Villaneuva MR., et al., 2003); and The Pain Assessment for Advanced Dementia (PAINAD) Scale, (Warden V., et al., 2003).


A tool of particular interest to me was the one designed for use by nursing assistants - Nursing Assistant-Administration Instrument to Assess Pain in the Demented Individuals (NOPAIN), (Snow AL., et al., 2001). The tool focuses on observation of specific behaviors while doing common care tasks such as bathing, turning, dressing and transfers. “Pain behaviors” are assessed both at rest and on movement. Critique of this tool suggests that it had limited comprehensiveness, only addressing obvious pain behaviors and not more subtle behaviors or cues, and may label some behaviors as indicating pain when they do not. However, I see this at least as a beginning acknowledgment that nursing assistants are the individuals who provide most of the care for cognitively impaired older adults and need to be given the education and skills to record and report behavior that may be indicative of pain. This can then be followed by a more comprehensive evaluation by the nurse.


Herr and colleagues recognize that developing tools and selecting appropriate tools to assess pain in the cognitively impaired adult is a continually evolving project. The plan is to regularly update this website. It is well worth a visit.


Clinical Practice Guidelines  ( )


Access to palliative care in the United States is uneven at best, as are the number of reliable high quality programs and overall system of quality assurance. A major concern has been lack of consistent palliative care guidelines which could be followed and supported by key national palliative care organizations.


With this as a background, a National Consensus Project, with representatives from five key national palliative care organizations (American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, National Hospice and Palliative Care Organization and Partnership in caring: America’s Voices for the Dying) convened in December 2001. There were five broad goals of the Consensus Project: The first was to build national consensus concerning the definition, philosophy and principles of palliative care. The second was to create voluntary practice guidelines for palliative care that describe the highest quality services for patients and families. The third was to disseminate the clinical practice guidelines to enable existing and future programs to better define their program organization, resource requirements and performance measures. The fourth was to help clinicians provide key elements of palliative care in the absence of palliative care programs. And the fifth was to promote recognition, stable reimbursement structures and accreditation initiatives.


             The National Consensus Project published their clinical practice guidelines in May, 2004. Eight domains critical to the practice of palliative care are addressed in detail: structure and process of care; physical, psychological and psychiatric; social; spiritual religious and existential; cultural; the imminently dying patient; and ethics and the law. These domains are outlined in great detail and are extraordinarily useful in both evaluating ones own palliative care practice but also if starting a program from scratch.

The basic tenets of each domain are outlined below:


Domain I – Structure and Process of Care care starts with comprehensive interdisciplinary assessment of patient and family, it addresses both identified and expressed needs of the patient and family, education and training are available, the team is committed to quality improvement, the emotional impact on team members is addressed, and the team has a relationship with hospice. Domain 2 – Physical pain and other symptoms and treatment side effects are managed using best practice, the team documents and communicates treatment alternatives, permitting patient/family to make informed choices, the family is educated and supported to provide safe/appropriate comfort measures to patients. Domain 3 – Psychological and Psychiatric psychological and psychiatric issues are assessed and managed based on best available evidence, the team employs pharmacologic, non pharmacologic and complementary/alternative medicine as appropriate; grief and bereavement programs are available to patients and families. Domain 4 – Social assessment (family structure, relationships, medical decision making, finances, sexuality, caregiver availability, access to medications and equipment), individualized, comprehensive care plans lessens caregiver burden and promotes well-being. Domain 5 – Spiritual, Religious and 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. Domain 6 – Cultural assesses and aims to meet cultural-specific needs of patients and families, respects and accommodates range of language, dietary, habitual and religious practices of patients and families, team has access to and uses translational resources, recruitment and hiring practices reflect cultural diversity and community. Domain 7 – The Imminently Dying Patientthe team recognizes imminence of death and provides appropriate care to patient/family, as the patient declines, the team introduces hospice and referral option, the team educates the family on signs/symptoms of approaching death in a developmentally, age and culturally appropriate manner. Domain 8 – Ethics and the Law the patients goals, preferences and choices are respected and form the basic for the care plan, the team is aware and addresses complex ethical issues, the team is knowledgeable about relevant federal and state statutes and regulations.


              These are extraordinarily worthwhile and useful guidelines to not only evaluate ones own practice but also as a framework for starting a program. In addition, because the guidelines were developed through a consortium of five key national palliative care organizations they will be useful when putting one’s case for the resources needed when planning a palliative care program.  


National Cancer Network (NCCN) practice Guidelines in Oncology – Palliative Care (


These practice guidelines were developed specifically for cancer patients and families and are one in a series developed by interdisciplinary NCCN panels called “Supportive Care Guidelines.”  Others within this series are: antiemetics, cancer and treatment-related fatigue, cancer pain, distress management, and fever and neutropenia. The guidelines were developed to meet the needs of cancer patients and their families throughout the course of their disease.


Included in the palliative care guidelines are: palliative care assessment, benefits and risks of anti-cancer therapy, symptoms – pain, dyspnea, anorexia/cachexia, delirium, advance care planning, social support resource/ management, special palliative care interventions, and after death care. The format is one of algorithms and decision making trees, with a patient having a life expectancy of 12-months being one factor that goes into the decision making tree. They are well done and are complementary to the broader palliative care guidelines discussed earlier. 

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