Whole Patient Assessment The Education in Palliative and End-of-life Care program at Northwestern University Feinberg School of Medicine, created with the support of the American Medical Association and the Robert Wood Johnson Foundation E P E C Module 3 Whole Patient Assessment

Overall goal of whole patient assessment A comprehensive assessment that allows the provider to address all the issues that contribute to a patient’s suffering at the end of life

Objectives Describe concepts of suffering Recognize importance of comprehensive assessment Identify and assess 9 key areas affecting patients.

Symptoms and suffering The broad perspective Symptoms = Suffering A narrow focus will miss the target Opioid associated somnolence Symptom intensity vs symptom distress The meaning of the symptom is more important than its’ intensity Recognizing suffering

Concepts of suffering Fragmentation of personhood – Cassell Broken stories – Brody Challenge to meaning – Byock Total pain – Saunders Relational distress- Ferrell and Coyle

Suffering Persons exist in relation to families biological acquisition chosen missing

Suffering Elements include Unique to the individual Sense of isolation/loneliness Often involves self conflict Loss of meaning Threat to “personhood”

Suffering Experienced by persons, not bodies Suffering is a threat to the person To understand the suffering one must understand the person But what is a person?

Aspects of personhood: Personality and character Relationships with self and with others History A private self Family An unconscious self Cultural identity A body Political identity A perceived future Roles and Activities A transcendent dimension Regular behaviors

The nature of suffering “Failure to understand the nature of suffering can result in medical intervention that not only fails to relieve suffering but becomes a source of suffering itself.” The relief of suffering and the cure of disease must be seen as twin obligations. - Eric Cassell, MD

Role of assessment Diagnostic tool Therapeutic tool Develops the clinician-patient relationship

The clinician’s role Listen & Acknowledge Analyze & Interpret Offer information, practical suggestions Introduce sources of support What is one of the most important sources of support?

The clinician’s role Listen & Acknowledge Analyze & Interpret Provide information & solutions But above all communicate interest and caring What is one of the most important sources of support?

Assessment overview … Illness/treatment summary Physical assessment Psychological assessment Decision-making capacity

… Assessment overview Communication assessment Social assessment Spiritual assessment Practical assessment Anticipatory planning

Illness/treatment summary History as medical evaluation Defines the medical context Identifies options for treatment History as narrative Allows patient to relate experience Uncovers the meaning of the illness to the patient Relieves sense of isolation Avoid “interrogation”

Symptoms, suffering ... Physical symptoms are common 13.5 in cancer inpatients 9.7 in cancer outpatients Physical symptoms related to primary illness adverse effects of medications therapy intercurrent illness

… Symptoms, suffering … Physical symptoms pain, nausea / vomiting constipation breathlessness weight loss weakness / fatigue loss of function insomnia etc...

… Symptoms, suffering Psychological distress anxiety depression worry fear sadness hopelessness grief shame etc...

Psychological assessment Symptoms are common and unrecognized Normalize emotional responses Discuss patient fears, unresolved issues, and goals of care Determine patient capacity

Decision-making capacity ... Implies the ability to understand and make own decision Patient must understand information use the information rationally appreciate the consequences come to reasonable decision for him/her

... Decision-making capacity Any physician can determine Capacity varies by decision Other cognitive abilities do not need to be intact

When a patient lacks capacity Proxy decision-maker Sources of information written advance directives patient’s verbal statements patient’s general values and beliefs how patient lived his / her life best interest determinations

Communication assessment There are many different communication styles Determine who is close to the patient Ask how much information the patient wants to know Ask who else should receive information and how much

Social assessment ... Culture Affects ways of behaving, feeling, thinking and being A strong determinant in attitudes toward health, illness, dying Look for care networks in a patient’s community Explore financial concerns Allow patient to express the meaning of their illness

Social isolation Americans live alone, in couples Other family working, frail or ill Other family live far away have lives of their own Friends have other obligations, priorities Sense of abandonment

Spiritual assessment Aspects of spirituality may include Religious community Beliefs Spirituality or religious leaders Meaning of existence May be distinct from religion Ask Any desired spiritual activities or rituals? Any spiritual concerns? What gives you strength and hope? Be aware of and discuss spiritual crises

Practical assessment Ask about practical concerns and abilities, including functional status Learn about family or informal caregivers Make sure basic needs are being met

Caregiving 90% of Americans believe it is a family responsibility Frequently falls to a small number of people often women ill equipped to provide care

Financial pressures 20% of family members quit work to provide care Financial devastation 31% lost family savings 40% of families became impoverished

Coping strategies Health adjustment and healthy bereavement is essential Vary from person to person May become destructive suicidal ideation premature death by PAS or euthanasia

Summary A comprehensive assessment that includes the issues that cause patients suffering guides end-of-life care