Best Practices in Psychosocial Oncology Katherine Walsh, PhD, MSW, LICSW Professor, Springfield College School of Social Work Past President: Association.

Best Practicesin

Psychosocial Oncology

Katherine Walsh, PhD, MSW, LICSWProfessor, Springfield College School of Social Work

Past President: Association of Oncology Social Work

Psychotherapist: Private Practice

Summit Hungary 2008

Cancer Incidence and Mortality: USA

Racial or Ethnic Variations‡All cancers combined, men:

Incidence rates are highest among black (607.3), followed by white (527.2), Hispanic (415.5), Asian/Pacific Islander (325.8), and American Indian/Alaska Native (288.6) men.

Death rates are highest among black (303.5), followed by white (224.8), Hispanic (152.8), American Indian/Alaska Native (151.2), and Asian/Pacific Islander (137.0) men.

All cancers combined, women:Incidence rates are highest among white (405.9), followed by black (379.7), Hispanic (318.6), Asian/Pacific Islander

(267.4), and American Indian/Alaska Native (242.2) women.

Death rates are highest among black (182.8), followed by white (156.4), American Indian/Alaska Native (110.7), Hispanic (101.9), and Asian/Pacific Islander (92.3) women.

Among four races and Hispanic origin:American Indian/Alaska Native men have the lowest incidence rates of cancer; however, Asian/Pacific Islander men have

the lowest death rates from cancer. White women have the highest incidence rates of cancer; however, black women have the highest death rates from cancer. American Indian/Alaska Native women have the lowest incidence rates of cancer and the third-highest cancer death rates.

Introduction Introduction of of chemotherapchemotherapy iny inRx of Rx of CancerCancer

““War on War on Cancer,”Cancer,” P.L. 92-P.L. 92-218, Nixon 218, Nixon adminadmin

19711971

First psychosocial First psychosocial research in oncology research in oncology published by published by psychiatrists and social psychiatrists and social worker teamworker team

1950s1950s

Psychosocial Oncology

National National Cancer Cancer Plan includes Plan includes rehabilitation, rehabilitation, cancer control, cancer control, and and psychosocial psychosocial

researchresearch

19721972 198419841976-19811976-1981

The The Psychosocial Psychosocial Oncology Oncology Group is Group is formedformed

AOSWIsformed

A Historical Perspective on Psychosocial Cancer Care: United States of America

IPOSIs formed

APOSIs formed

Oncology

APOSWIs formed

1990s1990s

First First decrease decrease in cancer in cancer mortalitiemortalities in USs in US

1960s1960s

CombinedTherapeuticModalitiesIncrease Survival inChildhoodleukemia

First PediatricOncology social Worker hired in Boston

Twenty to Twenty-first Century

Institute of MedicineReport

National CoalitionFor Cancer Survivorship(NCCS) sponsors firstMarch on Washington

2000 2006

Patient NavigationAct passed by US Congress

Mental HealthParity Act passed\By US Congress

20082007

Institute of Medicine Report

Factors contributing to Greater Emphasis on Psychological and Social Issues in Cancer

• Societal Attitudes shifting away from fatalism about cancer• Trend toward revealing diagnosis in many countries• Patient participation in treatment decisions (autonomy, informed

consent) • Increased doctor-patient dialogue• Development of valid instruments for measuring subjective

symptoms and quality of life• Recognition that effective cancer prevention and screening is

dependent on changing behaviors

• [Increased awareness of psychosocial sequelae of cancer and cancer treatment accompanying increased survival]

Holland, Jimmie (Ed.). (1998). Societal view of cancer and the emergence of psycho-

oncology. Chapter 1 in Holland and Jacobson, Psycho-oncology. New York: Oxford University Press; p.9

Factors influencing Funding and Psychosocial Oncology

• Federal Government Legislation & Funding • Government Insurance for Elders and Disabled

(Medicare) and the poor (Medicaid) • For profit insurance companies (insurance

provided through employers)• For profit Pharmaceutical and other Suppliers• Non-profit Organizations (American Cancer Society,

LAF, Cancer Care, Wellness Community, Hospitals who employ Physicians, Psychiatrists, Psychologists, Social Workers)

• Private Practitioners (Physicians, Psychiatrists, Psychologists, Social Workers, Complementary care providers-eg massage

Non-Profit Organizations

InternationalNationalRegional

StateCommunity

Clinics

For Profit Organizations

InternationalNationalRegional

StateCommunity

PhysicianPractionter

Offices

Institutions

Acute Hospitals(NCI CCC)(For Profit)

(Community)

Chronic/Rehab(Skilled Nursing)

Location of Service Provision

Four Broad Areas of Psycho-Oncology

• Psychosocial oncology services for patients (and families)

• Education and training programs

• Research addressing psychosocial issues

• Publications of research and scholarly papers Holland,J. (1998) p. 11

ADVOCACY• To influence Policies and Funding• To reduce health care disparities• To improve quality of care• To increase access to psychosocial care for all• To fund psychosocial research• To support education and training of

psychosocial oncology experts

NASW, AOSW, APOS, NCCS, NPAF, C-change

AOSW Association of Oncology Social WorkMission: To advance excellence in the psychosocial care of persons

with cancer, their families, and caregivers through: Networking, Education, Advocacy, Research, Resource Development

Vision Statement

AOSW envisions a global society in which oncology care meets the physical, emotional, social and spiritual needs of all people affected by cancer.

AOSW Goals

• Increase awareness of the psychosocial effects of cancer. 

• Advance the practice of psychosocial interventions that enhance quality of life and recovery of persons with cancer and their families. 

• Foster communication and support among psychosocial oncology caregivers. 

• Further the study of psychological and social effects of cancer through research and continuing education. 

• Advocate for programs and policies to meet the psychosocial needs of oncology patients and their families. 

• Promote liaison activities with other psychosocial oncology groups and professional oncology organizations. 

• Promote the highest professional standards and ethics in the practice of oncology social work.

IPOS

International Psycho-Oncology Society (IPOS) was created to foster international multidisciplinary communication about

• clinical, • educational and• research issues that relate to the subspecialty of psycho-oncology and

two primary psychosocial dimensions of cancer:  1) Response of patients, families and staff to cancer and

its treatment at all stages; 2) Psychological, social and behavioral factors that

influence tumor progression and survival.

American Psychosocial Oncology Society

• The mission of American Psychosocial Oncology Society is to advance the science and practice of psychosocial care for people with cancer.This includes:

• Providing a forum for professionals and individuals interested in the areas of psychological, social, behavioral, and spiritual aspects of cancer;

• Raising the level of awareness of health professionals and the public about psychological, social, behavioral, and spiritual domains of care for patients with cancer

• Developing and implementing educational programs for health professionals, patients, and the public on the psychological, social, behavioral, and spiritual aspects of cancer

• Developing a research agenda to be used as a guide for scientific study in the field • Developing standards of care for the management of the psychological, social,

behavioral, and spiritual domains of cancer • Assuring attention to the psychological, social, behavioral, and spiritual domains in

the evaluation of the quality of care for patients with cancer by regulatory agencies • Exploring innovative methods to enhance the recognition and treatment of

psychological, social, behavioral, and spiritual aspects of cancer • Promoting education and training of health professionals in the psychological, social,

behavioral, and spiritual domains of cancer • Addressing the special needs of children, the elderly, and the underserved.

Independent Mediating Outcome

CancerDisease andTreatment

effects

Personal

Medical

Social

Economic

Life Stresses

Interventions

Quality of Life

Survival

Bereavement

Model of Psychosocial Oncology Research

( Adapted from Holland, p. 13)

Variables

Complexity of Cancer

The complexity and variability of psychosocial issues associated with cancer has created the demand for highly skilled practitioners who are trained to provide multilevel assessment and intervention throughout the illness continuum. (Smith, Walsh-Burke and Cruzan, 1998)

Psychosocial services through the continuum of cancer care

CancerScreeningEvents

High Risk Screening forPsychosocialDistress

Counseling Individuals Families Groups

CaseManagement

Referral, Linking, Advocacy

DX RX

SURVIVORSHIP

EOL/Palliative CAREBEREAVEMNT

ComprehensivePsychosocialAssessment

Prof Ed Research and Publication

Education Pt/Caregiver Public SW Students

Community Organization/Coalition Building

Discharge Planning

Program Development

SupervisionAdministration

Legislation/Policy

PatientNavigation

Adv Directives

Pre-DX

GeneticCounseling

Evaluation

Treatment plan

Remission/ Recurrence

Preventtion

Interdisciplinary Team Collaboration

MD

Psychologist

Spiritual Counselor

Nursing

Social Work

Patient/Family

ScreeningAssessmentCase ManagementMedication managementCounseling and otherPsychosocial InterventionsFinancial AssistanceEducation AdvocacyResearch

Interdisciplinary Collaboration

“ Patients who are significantly depressed or experiencing severe anxiety and who are not responding to counseling or other psychosocial interventions should be discussed with interdisciplinary colleagues. There is a risk of suicide for those experiencing depression in the context of a life-limiting illness and suffering can be alleviated through appropriate intervention. Pain and fatigue can be contributing factors to anxiety and depression and addressing these is essential

Psychiatric referral may be advisable to address the pharmacological agents for treatment of depression or anxiety. There are a variety of anxiolytic (or anti-anxiety) and anti-depressant medications that can be helpful in alleviating anxiety.

AOSW Social Work and End of Life course www.dynamic-learning.com

Scope of Practice1. Services to cancer survivors, families, and caregivers through clinical practice

providing comprehensive psychosocial services and programs through all phases of the cancer experience

2. Services to institutions and agencies to increase their knowledge of the psychosocial, social, cultural and spiritual factors that impact coping with cancer

and its effects, and to insure provision of quality psychosocial programs and care.

  3.Services to the community through education, consultation, research and

volunteering to utilize, promote or strengthen the community services, programs, and resources available to meet the needs of cancer survivors.

  4.Services to the profession to support the appropriate orientation, supervision and

evaluation of providers in oncology; participate in and promote student training and professional education; and advance knowledge through clinical and other

research.

(AOSW) Scope and Standards of Practice (1998)

AOSW Standards of Practice• Use of high risk screening criteria to identify survivors and families in need of Social Work

services. 

• Completion of a psychosocial assessment to determine survivor and family’s strengths and needs relative to coping effectively with cancer diagnosis, treatment and follow-up cares. 

• Development of a multidisciplinary care plan with survivor and family input and based on mutual goals. 

• Use of a range of therapeutic and other interventions, including supportive counseling, group work, and education to address issues in each phase of the illness. 

• Provision of pre-admission, transfer, and discharge planning. 

• Provision of case management services. 

• Provision of direct assistance to meet financial, transportation, lodging and other needs. 

• Advocacy to remove barriers to quality care, to address gaps in service, to help survivors and families secure the protection of existing laws, and to work for any changes needed to policies, programs and legislation. 

• Involvement conducting and publishing research to advance knowledge about the impact of cancer, refine interventions, and evaluate practice outcomes.

1. Services to cancer survivors, families, and caregivers

through clinical practice providing comprehensive psychosocial services and programs through all phases of the cancer experience

Example: Services to cancer survivors, families, and caregivers

www.cancersurvivaltoolbox.org

The Cancer Survival Toolbox® is a free audio program designed to help cancer survivors and caregivers develop practical skills to deal with the

diagnosis, treatment and challenges of cancer.

The Toolbox is made possible by unrestricted educational grants from the Amgen Foundation and the EliLilly and Company Foundatio

2. Services to Institutions and Agencies

The goals of practice in providing to institutions and agencies are:• To insure that the agencies and institutions are responsive to the needs of both individual

cancer survivors, families and caregivers, as well as groups. • To contribute the multidisciplinary effort to provide quality medical psychosocial care to

oncology survivors.  • To assist social work colleagues and members of other disciplines to manage the stress

of clinical practice.

The functions necessary to such services are:Education and consultation to professionals and staff regarding the biopsychosocial,

environmental, spiritual, and cultural factors affecting cancer care. 

Collaboration with other professionals in the delivery of quality psychosocial care, education and research.

  Recording, statistical reporting, and evaluation to improve services, assist in identifying

gaps in services and programs, and assure quality care. 

Development of programs and resources to address the needs of cancer survivors. 

Provision of support services to aid in stress management.

Example:Service to Institutions andAgencies

3. Services to the Community

Goals Assure that community programs and resources address and are responsive to the needs of cancer survivors, families, and caregivers.

  Provide expertise to communities as they work to assist cancer survivors.

Functions Education of communities to increase awareness of the psychosocial needs of

cancer survivors, families, and caregivers. 

Collaboration with community agencies to remove barriers to cancer prevention, screening and early detection, and access to care.

  Collaboration in the development of special programs and resources to

address community-based needs. 

Consultation with voluntary cancer agencies, such as the American Cancer Society and the Leukemia and Lymphoma Society to provide community

education and develop programs to benefit cancer survivors.

Examples: Service to the Community

http://www.naswwebed.org/

http://www.helpstartshere.org/health_and_wellness/cancer/resources/understanding_cancer_course.html

Online Courses: Understanding Cancer Course :To understand cancer and cancer care for individuals with cancer and their loved ones

• Multidisciplinary Training in Psycho-Oncology• The "Multidisciplinary Training in Psycho-Oncology" is offered by the APOS Institute for Research and

Education (AIRE) at no cost and is intended to train cancer care professionals in key areas of psychosocial oncology. The program includes fifteen Webcast lectures in the five following tracks.

• Introduction to Oncology • Program Administration • Symptom Detection and Management (eight webcasts) • Interventions (four webcasts) • Population-Specific Issues

http://www.apos-society.org/professionals/meetings-ed/webcasts.aspx

Online courses: Achieving Cultural Competence to Reduce Health Disparities in End of Life Care

Example: Cancer Care

• ICAN• Teleconferences • Financial Assistance• Online Support Groups• Individual, Group, Family Counseling• Special programs serving Diverse

populations• Doula programs for End of Life Care

http://supportgroups.cancercare.org/index.php/topic,1267.0.html

Services to the ProfessionThe goals of providing services to the profession are:

To assure that oncology social workers have the necessary knowledge, skills, resources, time, funding, and support to deliver quality psychosocial services to all cancer survivors, families and

caregivers.

EXAMPLE

Oncology SocialWork Brochure

Produced by NASWAOSW

NASW Public EducationCampaign:

Oncology Social Work Advertisement

Example: IPOS Multilingual Multidisciplinary Online Lectures

Új!"A Daganatos Betegség Mint Családi Probléma" by Lea Baider PhD

Translator:  Tamás HalmaiIPOS Reviewer:  Katalin Muszbek MD Narrator:  Zsuzsa Adorjáni (Adorjáni Zsuzsa színészno, a Magyar Hospice Alapítvány támogatója)

Új!"Veszteség és Gyász" by David Kissane MD

Translator:  Tamás HalmaiIPOS Reviewer:  Katalin Muszbek MD Narrator:  György Csapó (Csapó György színész, a Magyar Hospice Alapítvány támogatója)

"Communication and Interpersonal Skills in Cancer Care" by Walter F. Baile, MD

Translator:  Dr. Mária MolnárNarrator:  György Csapó

"Anxiety and Adjustment Disorders in Cancer Patients" by Katalin Muszbek, MD

Translator:  Tamás HalmaiNarrator:  Zsuzsa Adorjáni

"Distress Management in Cancer" by Jimmie C. Holland, MD

Translator:  Tamás HalmaiNarrator:  Zsuzsa Adorjáni

http://www.ipos-society.org/professionals/meetings-ed/core-curriculum/core-curriculum-pres.htm#Hungarian

Case Example: What this means for the Patient and Family

• 32 yr old caucasian nurse discovers lump during pregnancy mamogram +• dx w triple negative breast ca in 8th month of pregnancy 4/07 (risk factors=age, pregnancy)• Husband is psych nurse. Insurance through his employer Both have hx of alcohol

abuse in 12 step recovery (risk factor) Pt unemployed (socioeconomic risk factor) • Delivers healthy baby 5/07• Mastectomy and reconstruction 6/07• Begins AC and Herceptin after birth 7/07• Sees osw in clinic-distress screen= + anxiety• Case management by OSW begins ; given Cancer Survival Toolbox• Referred to support group, attends 2x• Referred to family retreat program, d/n attend• Referred to Licensed Independent Clinical Social Worker for psychotherapy and

begins 9/08• Completes chemotherapy 10/07, Completes reconstruction 11/07• Husband self-refers for counseling 4/08• Recurs w metastasis to liver, lung, bones 6/08• Marital counseling session w husband 6/08• Radiation to bones begins 7/08• Herceptin,Zometa, Taxol begin 8/08• Acupunture, massage, self-hypnosis begin, psychotherapy continues

Psychotherapy

• Cognitive-behavioral therapy for anxiety (Cognitive restructuring, progressive

muscle relaxation and guided imagery)• Solution-focused marriage therapy sessions• Motivational interviewing for cessation of alcohol

and tobacco use• Self-advocacy training for adequate medication

for side effects of chemo• Advocacy for financial support in day care Disability income, Palliative Care

Cancer Patient Bill of Rights