The science of supportive The science of supportive care: A - - PowerPoint PPT Presentation

The science of supportive The science of supportive care:

A research framework for psychosocial

• ncology and palliative care

gy p

G R di MD G Gary Rodin MD University of Toronto/University Health Network Chair in Psychosocial Oncology and Palliative Care

The Short (and long) history of Palliative Care Palliative Care

Longitudinal & Integrated Cancer Care & Integrated Cancer Care

Palliative Care Supportive Care

grief & grief & anti anti-

• cancer

cancer

Cancer Cancer Risk Risk

grief & grief & bereavement bereavement treatments treatments

Diagnosis Diagnosis

Psychosocial Oncology

Genetic Genetic Risk Risk Diagnosis Diagnosis Decision Decision-

• Making

Making Treatment Treatment Locally Locally Advanced Advanced R E t & E t & Advanced Advanced Re Re-

• Entry &

Entry & Survivorship Survivorship Recurrence Recurrence Disease Disease Progression Progression Advanced Disease Advanced Disease End of Life End of Life Bereavement Bereavement

The Rise of Research in Palliative Care Care

16000 12000 14000 6000 8000 10000 2000 4000 6000 1950-59 1960-69 1970-79 1980-89 1990-99 2000-07

Unproven Beliefs in Palliative and Supportive Care Care

Psychosocial and

t ti t symptomatic outcomes improved by:

Routine distress

screening screening

Early palliative acre Routine bereavement

counseling counseling

Psychosocial

interventions prolong survival

Psychostimulants are

effective for the treatment of depression p

Has the Revolution of Palliative & Supportive Care Changed Medical Practice? Changed Medical Practice?

Pain

50% f ti t h di d i h it l t d t t i

50% of patients who died in hospital report moderate to severe pain

SUPPORT

Depression

• nly 1/3 of patients with MDD attending a UK cancer center
• y

/3 o pa e s a e d g a U ca ce ce e received any potentially effective RX

Sharpe et et al, 2004

End of Life

18 5% of cancer patients receive chemotherapy in the last two weeks 18.5% of cancer patients receive chemotherapy in the last two weeks

• f life

Earle et al 2004

<30% referred to palliative care

SUPPORT SUPPORT

Communication

Severe communication problems reported by up to 40% of patients

at the EOL in UK, Ireland and Italy

Hi i t l 2002

Higginson et al, 2002

The Domains of Research

• Distress
• Needs

M i

• Meaning
• Communication
• Planning the end
• Planning the end
• The “good death”
• Bereavement

Bereavement

Why Has Competence and Research in Palliative Care Been Slow to Develop Palliative Care Been Slow to Develop

Curative model of medicine Curative model of medicine Teaching and research in acute care settings Professional incentives for active treatment Professional incentives for active treatment Medical education Nonacademic tradition of palliative care Nonacademic tradition of palliative care Interdisciplinary requirements The complexity of the problems addressed The complexity of the problems addressed

Methodological and Practical Challenges of Research in Palliative and Supportive Care Research in Palliative and Supportive Care

Recruitment & informed consent n

vulnerable populations

Valid and reliable measures

Proxy measures Retrospective reports

F t ti f h lth

Fragmentation of health care Lack of system-wide database Predictably deteriorating course Predictably deteriorating course Multiple interacting risk factors Complexity of the problems

p y p

The Problem of Measurement

Demoralization Demoralization

Marital/ Family Marital/ Family Existential Concerns Existential Concerns Functioning Functioning Existential Concerns Existential Concerns & Social Needs & Social Needs

Depression Depression Anxiety Anxiety Anxiety Anxiety

Spiritual Spiritual Wellbeing Wellbeing

Pain Pain

Wellbeing Wellbeing

Desire for Desire for Death Death

The Cascade Effect of Multiple Risk & Protective Factors

Disease Burden

Pain and Physical Distress S f i

Psychosocial Factors:

Social Support

Factors

Stage of Disease Proximity to Death Attachment Security Self Esteem Spirituality & Religiosity

Depression Hopelessness Desire For Hastened Death Desire For Hastened Death

Rodin et al, Soc Sci Med, in press

Frequency of Specific Physical Symptoms in Patients with Metastatic GI and Lung Cancer Patients with Metastatic GI and Lung Cancer

80 100 60 80 40

%

20

Lack of Energy Pain Feeling Drowsy Difficulty Sleeping Dry Mouth Problems in Sexual Interest/Activity Changes in taste

WTL Study

Prevalence of Depression, Hopelessness and the Desire for Hastened Death the Desire for Hastened Death

40 30 35 40 20 25 n=326 101 5 10 15 n=101 spouse 5 BDI>15 BHS>8 SAHD>9

J Pain & Symptom Mgmt, 2007 J Pain & Symptom Mgmt, 2007 Journal of Clinical Oncology, 2007

Informing a Informing a Bi thi l D b t Bi thi l D b t Bioethical Debate Bioethical Debate Right to Die Right to Die Right to Palliative Right to Palliative Care Care

relief of suffering meaning in suffering support

Significant Predictors of Depression

Proximity to death

y

Performance status Severity and number of

physical symptoms

Self esteem Attachment anxiety Attachment anxiety Spiritual well-being Hopelessness Hopelessness

• Rodin et al Soc

Sci & Med, in press

Disease burden, psychosocial risk & time

The Future of Research in Palliative and Supportive Care Supportive Care

Bi l Bi l P h l P h l Symptoms/ Biology Biology Psychology Psychology Symptoms/ Experience Clinical Course Social/ Social/ Relational Relational Health Care Course Relational Relational Care