Measurement and Evaluation ToolsThe following is a selection of tools for assessing pain and assessing and tracking the level of symptoms (some are patient reported).
Brief Pain Inventory (long form) 
A pain assessment tool for use with cancer patients. Provides information on
the intensity of pain (the sensory dimension) as well as the degree to which
pain interferes with function (the reactive dimension).
Brief Pain Inventory (short form)
Brief Fatigue Inventory
A tool to rapidly assess the severity and impact of cancer-related fatigue.
Edmonton Symptom
Assessment Scale (ESAS)
This tool is a nine-item patient-rated symptom visual analogue scale developed
for use in assessing the symptoms of patients receiving palliative care.
McGill Pain Inventory- Short Form
A questionnaire incorporating a series of adjectives to describe the
characteristics and intensity of pain.
Memorial Symptom Assessment Scale (MSAS)
A scale used to assess 32 physical and psychological symptoms in three
different dimensions: intensity, frequency, and distress.
Memorial Symptom Assessment Scale - Short
Form (MSAS-SF)
The MSAS-SF is an abbreviated version of the Memorial Symptom Assessment Scale,
measuring 32 symptoms with one dimension.
Condensed Memorial Symptom Assessment Scale
(CMSAS)
The CMSAS is a condensed verison of the Memorial Symptom Assessment
Scale, measuring 14 symptoms with one dimension.
Needs at the End-of-life Screening Tool
(NEST)
NEST is a comprehensive assessment and outcome measures instrument.
Palliative Care Outcome Scale (POS)
A 10-item scale (plus an open question) that was specifically developed and
validated for palliative care and covers physical symptoms, patient and family
or caregiver anxiety/fears and well being. Please register
to access this tool.
Wong-Baker FACES Pain Rating Scale
A visual analog scale to assess pain in pediatric patients. For permission to
use the rating scale, please complete the author's online
request form.
Functional status is an individual's ability to perform normal daily activities required to meet basic needs, fulfill usual roles, and maintain health and well-being. Decline in functional status is measured by an individual's loss of independence in activities of daily living (ADLs) over a period of time.
The following is a selection of tools that can be used to rate the ability of patients to maintain their independence in the context of their daily life and encompass dimensions of physical, emotional, and cognitive state.
ECOG Performance Status
A tool for doctors and researchers to assess how a patient's disease is
progressing, how the disease affects the daily living abilities of the patient,
and how to determine appropriate treatment and prognosis.
Edmonton Functional Assessment Tool (EFAT)
to document the degrees of functional performance of patients throughout the
terminal phase.
Karnofsky Performance Scale
Commonly used for assessing terminally ill patients, often used to determine
appropriateness of hospice referral.
Katz Index of Independence in Activities of
Daily Living
Assesses the ability of patients to conduct activities of daily living.
Palliative Performance Scale version 2
(PPSv2)
Measures the functional status of a patient and assigns a Palliative Performance
Value; serves as a communication tool for quickly describing a patient's
current functional level.
The following is a selection of tools that can be used to measure the psychological and social needs of patients and caregivers.
Afterdeath Bereaved Family Interview
(hospital version)
A survey used to measure quality of care at the end of life from the unique
perspective of family members. Please complete the Toolkit Registration
Form.
Afterdeath Bereaved Family Interview
(hospice version)
Afterdeath Bereaved Family Interview
(nursing home version)
Beck Depression Inventory (BDI)
A 21-item multiple choice test used for assessing the presence and degree of
depression in adolescents and adults. The BDI is copyrighted, and may not be
reproduced here. Please contact the PsychCorp
and Harcourt Assessment Center for more information.
Blessed-Roth Dementia Scale (DS)
A brief behavioural scale based on the interview of a close informant. The DS
has proved to be a sensitive and specific screening test for dementia.
Caregiver Strain Index
A tool that measures strain related to care provision. Used to assess
individuals who have assumed the role of caregiver for an older adult.
Geriatric Depression Scale (long
form)
A 30-item screening tool for symptoms of depression in the elderly.
Geriatric Depression Scale (short
form)
A 15-item screening tool for symptoms of depression in the elderly.
Hamilton Depression Scale
Provides an indication of depression and, over time, provides a guide to
progress.
Herth Hope Index
A 12-item interview containing three dimensions: temporality and future,
positive readiness and expectance, and interconnectedness. Tested in community
and hospital patients and family members. Please contact the author for
permission to use this tool.
Mini-Mental State Examination
This tool is copyrighted and is available from Psychological Assessment
Resources (PAR). If you have not already established a qualification
level with PAR, please complete the Qualification Form
for Medical and Allied Health Professionals and return it with your first order.
Mini Mental State Questionnaire
A screening tool for assessing cognitive impairment.
Needs at the End-of-life Screening Tool
(NEST)
NEST is a comprehensive assessment and outcome measures instrument.
Palliative Care Outcome Scale (POS)
A 10-item scale (plus an open question) that was specifically developed and
validated for palliative care and covers physical symptoms, patient and family
or caregiver anxiety/fears and well being. Please register
to access this tool.
Scales of Psychological Well-Being
Self-report scales to assess an individual's well-being at a particular
moment in time within each of the following 6 dimensions: autonomy,
environmental mastery, personal growth, positive relations with others, purpose
in life, self-acceptance. This tool is not available for viewing.
Short Portable Mental Health Questionnaire
(SPMSQ)
The SPMSQ is a 10-item test measuring the presence and the degree of
intellectual impairment of the elderly.
The following is a selection of tools that measure grief reactions; used to assess bereavement needs and outcomes:
Afterdeath Bereaved Family Interview
(Hospital)
A survey used to measure quality of care at the end of life from the unique
perspective of family members. Please complete the Toolkit Registration
Form.
Afterdeath Bereaved Family Interview
(Hospice)
Afterdeath Bereaved Family Interview
(Nursing Home)
Caregiver Strain Index
A tool that measures strain related to care provision. Used to assess
individuals who have assumed the role of caregiver for an older adult.
FAMCARE Scale
A 20-item scale measuring family satisfaction with health care given to the
patient and to them.
Grief Resolution Index
Measures how well a widow has come to terms with death.
Inventory of Complicated Grief
A tool to measure the maladaptive symptoms of loss.
The following is a selection of tools designed to measure quality of life for patients with advanced disease.
EORTC QOL Scale
A 30-item, cancer specific questionnaire developed by the European Organization
for Research and Treatment of Cancer for assessing the quality of life in
cancer patients. Complete the EORTC's User's Agreement in
order to access and use the full questionnaire.
FACT-G (FACT-L)
Used to assess the functional status of patients with specific cancer
diagnosis.
Complete the FACIT User's Agreement in
order to access and use this tool.
McGill Quality of Life Index
A 20-item scale specifically developed to measure quality of life at the end of
life. Contact the author at robin.cohen@mcgill.ca
to complete the User's Agreement and obtain a copy of this tool.
Missoula-VITAS Quality of Life Index
(MVQOLI)
The MVQOLI asks patients about 5 dimensions or domains of quality of life:
symptoms; function; interpersonal; well-being; and transcendence. The
instrument is specifically designed to assess the patients personal experience
in each of these dimensions. Please register with the author to use
this tool.
Needs at the End-of-life Screening Tool
(NEST)
NEST is a comprehensive assessment and outcome measures instrument.
Quality of Life at the End of Life (QUAL-E)
A tool to assist in the evaluation of the quality and effectiveness of
interventions targeting improved care at the end of life.
Regional ResourcesHospices
Aseracare http://www.aseracare.com/Asera
Compassionate Care Hospice http://www.cchnet.net/
Heartland http://www.heartlandhospice.com/
Hospice Community Care http://www.hospice-homehealth.com/
Hospice of the Sacred Heart http://www.hospicesacredheart.org/
Mercy Hospice http://www.ehealthconnection.com/regions/nepa/
Southern Care http://www.southerncarehospice.net/
VNA Hospice http://www.vnahospice.org/
Remove Hospice Saint John – it is no longer a hospice.
Cancer Services
Northeast Radiation Oncology Center http://www.nrocdoctors.com/
Northeast Regional Cancer Institute http://www.cancernepa.org/web/
Professional Radiation Oncology Partners
http://www.radiationpartners.org/partners.html
Non-Cancer Support Services
Alzheimer's Association http://www.alzpa.org/default.asp
American Red Cross http://www.redcross.org/
Area Agency on Aging http://www.aaaphx.org/main/default.asp
Advocacy/Public InformationAging with Dignity (Five WishesTM)
Contains the Five Wishes, a document that helps the aging express their final wishes and, unlike other living wills and advanced directives, sees to all of a person's needs: medical, personal, emotional, and spiritual.
Alzheimer's Association http://www.alza.org/
The Alzheimer's Association, the world leader in Alzheimer research and support, is the first and largest voluntary health organization dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer's.
American Alliance of Cancer Pain Initiatives http://www.aacpi.wisc.edu/
The American Alliance of Cancer Pain Initiatives (AACPI) is a network of state-based Pain Initiative organizations that work to remove the barriers that impede pain relief through education, advocacy and institutional improvement.
American Cancer Society's Research Program and Funding http://www.cancer.org/docroot/RES/RES_0.asp
The American Cancer Society is the largest non-government funder of cancer research in the United States. Since the Research Program began in 1946, the ACS has devoted about $3 billion to cancer research.
American College of Physicians-American Society of Internal Medicine
Free End of Life Materials
Under the auspices of the American College of Physicians-American Society
of Internal Medicine, a working group of physicians and patient advocates has
developed a set of informational materials for patients nearing the end of
life. Brochures are available in groups of 50 or can be downloaded from the
web.
American Geriatrics Society http://www.americangeriatrics.org/
The American Geriatrics Society (AGS) is a nationwide, not-for-profit association of geriatrics health care professionals, research scientists, and other concerned individuals dedicated to improving the health, independence and quality of life of all older people.
American Pain Foundation, Inc.
Information, resource and patient advocacy organization serving people with pain. http://www.painfoundation.org
American Pain Society http://www.ampainsoc.org/
The American Pain Society is a multidisciplinary organization whose mission is to advance pain-related research, education, treatment and professional practice.
Americans for Better Care of the Dying
Americans for Better Care of the Dying (ABCD) is a Washington, DC based organization dedicated to ensuring that all Americans can count on good end of life care. ABCD seeks to achieve substantive health care reform through improved policy, professional practice, and care reimbursement.
Association for Death Education and Counseling
Provides information, support, and resources to its multicultural membership and, through them, to the public.http://www.adec.org
Cancer Pain Release
Publication of the World Health Organization http://www.whocancerpain.wisc.edu
Caring Connections
Practical resources to help you make informed decisions about end-of-life care. Materials designed to help you talk with your family, doctors and others and develop a plan about the care you want to receive. http://www.caringinfo.org
Children's Hospice International
Contains information about the movement to extend hospice services to children. It has information on hospice and various other services specific to the care of children as well as information on new projects being undertaken to improve care in this field.
City of Hope
Pain/Beckman Research Institute Serves as a clearinghouse to disseminate information and resources to improve the quality of pain management. http://www.cityofhope.org/prc
Death with
Dignity National Center
Contains a variety of information including: state and federal legislative news
on right-to-die and end-of-life issues, international news, a complete glossary
and timeline for the right-to-die movement, reading lists with direct links to
many journal articles, links for patients, etc.
Dying Well
Resources to empower persons with life-threatening illnesses, and their families to live as fully as possible during the dying process. http://www.dyingwell.org
Eyes on the Prize
A website supporting women affected by gynecological cancer. http://www.eyesontheprize.org
Finding Our Way: Living With Dying in America
The Finding Our Way national public education initiative is focused on bringing practical information to the American public regarding end of life and its surrounding issues. http://www.findingourway.net
The Gerontological Society of America http://www.geron.org/
The Gerontological Society of America (GSA), was founded in 1945 and is the oldest and largest national multidisciplinary scientific organization devoted to the advancement of gerontological research.
Get Palliative Care.org
Palliative care resource site for patients and their families. http://www.getpalliativecare.org
Growth House Inc. - Hospice Section
Site which provides links and subject matter to many fields of health care. This particular link will take you to the hospice homecare section. http://www.growthhouse.org/hospice.html
Hospice Foundation of America
Conducts programs on terminal illness, death, process of grief and bereavement. http://www.hospicefoundation.org
Innovations in End-of-Life Care
Online journal features peer-reviewed examples of promising practices in end-of-life care. This is a site of archived material. http://www.edc.org/lastacts
International Association for Hospice and Palliative Care http://www.hospicecare.com/
International Association for Hospice and Palliative Care (IAHPC) is a not-for-profit organization that promotes communication, facilitates and provides education, and is an information resource for patients, professionals, health care providers and policy makers around the world.
National Cancer Institute
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH)in the Department of Health and Human Services (DHHS). The NCI is the Federal Government's principal agency for cancer research and training. http://www.nci.nih.gov
NIH Road Map for Medical Research http://www.nihroadmap.nih.gov/
The NIH Roadmap identifies the most compelling opportunities in three main areas: new pathways to discovery, research teams of the future, and re-engineering the clinical research enterprise.
National Consensus Project
The purpose of the National Consensus Project for Quality Palliative Care is to promote the implementation of Clinical Practice Guidelines that ensure care of consistent and high quality, and that guide the development and structure of new and existing palliative care services. http://www.nationalconsensusproject.org
National Hospice and Palliative Care Organization
Established in 1978, the National Hospice and Palliative Care Organization is a nonprofit organization whose mission is advocacy for the rights of terminally ill Americans. NHPCO is the largest nonprofit membership organization devoted exclusively to the promotion of hospice care in America. In addition to providing informational and educational materials to members, NHPCO provides information and referrals to the public.
Natural StandardComplementary and alternative therapies. http://www.naturalstandard.com
On Our Own Terms: Moyers on Dying
Supports the On Our Own Terms outreach campaign with various tools, articles, personal stories, audio and video clips, and interactive opportunities. http://www.thirteen.org/onourownterms
Oncotalk http://depts.washington.edu/oncotalk/
Oncotalk, a training program for Oncology Fellows funded by the National Cancer Institute and based at the University of Washington, is dedicated to improving oncologists' communication skills.
Pain & Policy Studies Group http://www.medsch.wisc.edu/painpolicy
PPSG's mission is to "balance" international, national and state policies to ensure adequate availability of pain medications for patient care while minimizing diversion and abuse, and to support a global communications program to improve access to information about pain relief, palliative care, and policy.
Palliative Care: One Vision, One Voice.
Nurses share initiatives and projects related to improving patient care at the end of life. http://www.palliativecarenursing.net
Palliative Care Policy Center
The Palliative Care Policy Center (PCPC) offers expert support to
hospitals, nursing homes, health systems, hospices, and other organizations
that serve individuals nearing the end of life. We seek to help you make
breakthrough change happen in areas that matter to patients and families. A key
goal of our activities is to gather information and create a common database
that can help improve the experience of dying patients and their families
everywhere. We make our findings and lessons learned available to all so that
all who aim to improve care for serious illness may succeed.
Palliative Dementia Care Resources http://www.pdcronline.org
Resources for professionals and families related to care of patients with dementia.
Pennsylvania Cancer Pain Initiative
A statewide voluntary professional organization since 1989, with its goals to increase provider knowledge about pain assessment, pain relief, and appropriate prescribing practices. Educate the public about their rights to pain control. Serve as a resource center for education and communication of pain relief. http://www.papainrelief.org/
Population Based Palliative Care Research Network (PoPCRN) http://www.uchsc.edu/popcrn/
PoPCRN is committed to enhancing the care of persons at the end of life and their families through the conduct and dissemination of high-quality research in palliative care settings. Those interested in planning hospice-based research should contact PoPCRN.
Project on Death in America http://www.soros.org/initiatives/pdia
The Project on Death in America (PDIA), an Open Society Institute initiative, has closed. From 1994 to 2003, PDIA worked to understand and transform the culture and experience of dying and bereavement.
RAND Center to Improve Care of the Dying. http://www.rand.org/organization/health/dying.html
Conducts research designed to improve a system of care in which persons with serious and eventually fatal chronic illness can live comfortably and meaningfully until death.
San Diego Hospice and Palliative Care http://www.sdhospice.org/about.htm
San Diego Hospice & Palliative Care is a not-for-profit, independent health care organization providing expert pain management and compassionate care to adults, children and infants living with serious or life-limiting illness.
Strong Health http://www.stronghealth.com/
Strong Health, based at the University of Rochester Medical Center, is a network of doctors, nurses, allied health professionals, and hospitals working in concert with patients and communities to create enhanced quality of life.
A coalition of like-minded Catholic health care providers and service organizations dedicated to promoting cultural change that embraces supportive care, compassionate relief of suffering and pain, and symptom management for helping people living with life-threatening illness.
The University of Pennsylvania ONCOLINK
The University of Pennsylvania's ONCOLINK site provides comprehensive information about the care of patients. Topics include: Disease Oriented Menus; Psychosocial Support; Screening and Prevention; Clinical Trials and much more.
Clinical and Educational ResourcesAmerican Academy of Hospice and Palliative Medicine (AAHPM)
AAHPM is an organization of physicians and other medical professionals dedicated to excellence in and advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy
American Association of Heart Failure Nurses http://www.aahfn.org
A national nursing association specializing in heart failure nursing.
American Board of Hospice and Palliative Medicine (ABHPM)
ABHPM promotes excellence in the care of all patients with advanced, progressive illness through the development of standards for training and practice in palliative medicine. The Board is an independent, non-profit organization whose certificate is recognized as signifying a high level of physician competence in the discipline of palliative medicine.
The Canadian Hospice Palliative Care Association (CHPCA)
CHPCA is the national association which provides leadership in hospice palliative care in Canada. CHPCA offers leadership in the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened.
Center to Advance Palliative Care (CAPC)
CAPC is a resource to hospitals and other health care settings interested in developing palliative care programs. CAPC is dedicated to increasing the availability of quality palliative care services in hospitals and other health care settings for people with life-threatening illnesses, their families, and caregivers.
Education for Physicians on End-of-Life Care (EPEC)
The EPEC Project, supported by a grant from the Robert Wood Johnson Foundation, is an ambitious, 2-year initiative designed to educate physicians across the United States on the essential clinical competencies in end of life care. The EPEC curriculum has been designed with input from nationally respected experts in the field and feedback from participants in early training conferences. It combines didactic sessions, videotape presentations, interactive discussions, and practical exercises. http://www.epec.net
End of Life/Palliative Education Research Center (EPERC)
Fast Facts, Fast Facts Index http://www.eperc.mcw.edu/ff_index.htm
End-of-Life Nursing Education Consortium (ELNEC)
The End-of-Life Nursing Education Consortium (ELNEC) project is a comprehensive, national education program to improve end-of-life care by nurses, and is funded by a major grant from The Robert Wood Johnson Foundation. Major project goals are to develop a core of expert nursing educators and to coordinate national nursing efforts in end-of-life care. http://www.aacn.nche.edu/elnec
End-of-Life Physician Education Resource Center (EPERC)
Assists physician educators and others in locating high-quality, peer-reviewed training materials. http://www.eperc.mcw.edu
Epidemiology of Dying and End-of-Life Care (EDELE)
The website provides a searchable catalogue for data about people who died and their families, healthcare and community resources for end-of-life care, use of these resources, and outcome and satisfaction with care. http://www.edeledata.org
European Association for Palliative Care
A non-governmental organization recognized by the Council of Europe, with goals to improve awareness, knowledge, and expertise in end-of-life care, and to unify national palliative care organizations and establish an international network for the exchange of information and expertise.
Fast Facts – from the American Academy of Hospice and Palliative Care
Hosted on the American Academy of Hospice and Palliative Care Website, Fast Facts provides a concise summary of key issues in hospice and palliative care.
Hospice and Palliative Nurses Association (HPNA)
Established in 1986, HPNA is the nation's largest and oldest professional nursing organization dedicated to promoting excellence in pain management and end-of-life care.
National Hospice and Palliative Care Organization (NHPCO)
NHPCO is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
Patient Education and Caring: End-of-Life (PEACE) Series
FREE, downloadable pamphlets available from American College of Physicians-American Society of Internal Medicine website for patients regarding palliative care and hospice.
The National Consensus Project for Quality Palliative Care
The purpose of the National Consensus Project for Quality Palliative Care is to promote the implementation of Clinical Practice Guidelines that ensure care of consistent and high quality, and that guide the development and structure of new and existing palliative care services.
Shaare Zedek Cancer Pain and Palliative Care Reference Database
This is a searchable database of over 30,000 references related to Cancer Pain and Palliative Care. The database was developed and is maintained by Dr. Nathan Cherny, who is the Director of the Cancer Pain and Palliative Care Service in the Oncology Department at the Shaare Zedek Medical Center in Jerusalem.
WHO Pain and Palliative Care Communications Program
The mission of the WHO Pain and Palliative Care Communications Program is to improve access to professional education resources in pain control and palliative care, and actively support the WHO Cancer Control Program; we publish Cancer Pain Release, the only WHO periodical on pain control and palliative care and a well recognized resource for professional education.
Professional OrganizationsAmerican Academy of Hospice and Palliative Care
AAHPM is an organization of physicians and other medical professionals dedicated to excellence in and advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy
American Board of Hospice and Palliative Medicine
The ABHPM Web site provides information about board certification for hospice and palliative medicine, and also provides eligibility requirements, testing dates, and registration information.
The American Pain Society is a multidisciplinary organization of basic and clinical scientists, practicing clinicians, policy analysts, and others. The mission of the American Pain Society is to advance pain-related research, education, treatment and professional practice.
The American College of Physicians-American Society of Internal Medicine (ACP-ASIM) is the nation's largest medical specialty society. Its mission is to enhance the quality and effectiveness of health care by fostering excellence and professionalism in the practice of medicine.
Hospice and Palliative Nurses Association
The purpose of the Hospice and Palliative Nurses Association (HPNA) is to exchange information, experiences, and ideas; to promote understanding of the specialties of hospice and palliative nursing; and to study and promote hospice and palliative nursing research.
Hospice Foundation of America provides leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the American health care system and the role of hospice within it.
Institute for Health Care Improvement
IHI is a reliable source of energy, knowledge, and support for a never-ending campaign to improve health care worldwide. The Institute helps accelerate change in health care by cultivating promising concepts for improving patient care and turning those ideas into action.
International Association for Hospice and Palliative Care
Offers information, a newsletter, information about the "Twinning Program," Ethics, Journal Contents, and the Palliative Care Bookshop. Of special interest is the online Palliative Care Manual.
National Hospice and Palliative Care Organization
Established in 1978, the National Hospice and Palliative Care Organization is a nonprofit organization whose mission is advocacy for the rights of terminally ill Americans. NHPCO is the largest nonprofit membership organization devoted exclusively to the promotion of hospice care in America. In addition to providing informational and educational materials to members, NHPCO provides information and referrals to the public.