Psychosocial Assessment

KEYPOINTS

  • Illness affects and impacts people differently and there is no set “formula” for assessment
  • A holistic approach to assessment includes attending to the range of biological, psychological, social, cultural and spiritual aspects of a person
  • Assessment begins with knowledge of the issues that may influence the well-being of the patient and family/caregivers
  • Assessment involves collecting information, and identifying strengths, resources and needs
  • Assessment and the gathering of information is an ongoing process. The psychosocial needs of patients and family/caregivers often change over the course of illness

CONSIDERATIONS

Initial Assessment

The Initial Assessment provides an opportunity to gather as much information as possible about the context of the patient and the family/caregivers and the impacts illness is having in various areas of their lives. All relevant assessment information may not be gathered in the first meeting. The following are examples of areas of assessment that may be helpful:

Bio-medical considerations

  • Diagnosis
  • Previous/concurrent health issues, medications
  • Traditional and non-traditional health practices

Psychosocial considerations

  • Demographic information
  • Social support system
  • Impacts of illness on daily living and relationships
  • Work/education history, skills and interests
  • Strengths and coping strategies
  • Self-care activities, e.g., meditation, exercise, prayer, etc.
  • Understanding of diagnosis and prognosis
  • Experience and comfort level with health care system
  • Goals/hopes/expectations
  • Fears/concerns
  • Previous and/or anticipated losses
  • Communication and information needs
  • Psychological issues and support needs

Spiritual/cultural considerations

  • Spiritual beliefs and connections
  • Patient’s description of their spirituality
  • Spiritual needs/requests/rituals
  • Beliefs and values around health/illness/death
  • Beliefs and values around pain and pain management

Practical considerations

  • Financial needs
  • Transportation
  • Housing/living arrangements/child care needs
  • Burial/funeral planning

STRATEGIES

The following are examples of questions that may help facilitate discussion during the initial assessment process and on-going assessment:

General questions

  • What are people’s family and community of origin?
  • What role/responsibilities does this person have in the family and community?
  • How is this illness impacting daily living? Relationships?
  • What are people’s beliefs and fears about illness, death, dying and bereavement?
  • What do people know, want to know, and want others to know about their current health status?

Strengths-focused questions

  • What do patients and family/caregiver identify as their internal and external strengths and abilities?
  • In the past, what has given people strength to cope with difficult situations?
  • What makes people feel connected to their spirituality? What spiritual beliefs may influence decision-making?
  • What are people’s illness beliefs?
  • Family dynamics; what is working? What is challenging?
  • What is most helpful and supportive at this time?
  • What meanings and hopes do people attach to their lives (e.g., spiritual, social, emotional connection to self and others)?

Risk-focused questions

  • What is currently worrying or distressing?
  • What prior loss experiences and concurrent life issues exist?
  • What social and cultural factors may impact people’s experiences (e.g., gender/family/social roles, issues, pressures, expectations)?
  • Is there history of family conflict, complex relationships, recent losses?
  • Is there history of addiction, abuse or mental health issues?

Practical needs questions

  • What practical assistance is needed now and in the future (e.g., around finances, housing, transportation, food, child care, advocacy, decision-making, care planning, burials and funerals, etc.)?
  • What connections exist with other helping professionals?
  • What other community resources may be helpful?
  • What assistance is necessary to access other supports?

ON-GOING ASSESSMENT

The psychosocial/spiritual needs and experiences of patients and family/caregivers often change over the course of illness. The following psychosocial/spiritual considerations for the Palliative Performance Scale (PPS) are meant to serve as a general guide, to be individually adapted and adjusted to suit the uniqueness of each person’s experiences and transitions.

PPS 60-50%

Communication issues

  • Psychosocial considerations
    • Feelings of shock, uncertainty, hope, despair
    • Patients and families may make different choices about what and with whom to communicate
    • Patients, families and team may be in different places regarding prognosis and expectations
  • Helpful strategies
    • Daily life routines increasingly impacted - support adjustments from familiar to new routines
    • Normalizing differences in coping and communication styles
    • Suggest ways to broach difficult topics
    • Discuss people’s needs and feelings
    • Model words/language that facilitate ways to approach delicate conversations (see Communication)

Family issues

  • Psychosocial considerations
    • Strategies for coping, adjusting and relating will be tested
    • Pre-existing conflicts and tensions may resurface
    • People’s capabilities and decisions may be doubted and questioned
  • Helpful strategies
    • Acknowledge conflict - opportunity for dialogue
    • Facilitate discussion - offer opportunities for people to come together to discuss and explore concerns and strategies

PPS 40-30%

Dependence and withdrawal

  • Psychosocial considerations
    • Increased reliance and dependence on family/caregivers
    • Struggles in adjusting with the practical, social and emotional implications
    • Changes in roles and relationships between patients and families
  • Helpful strategies
    • Support independence and help people recognize their choices and aspects of situation that they can control
    • Identify alternative sources of support - exploring ways to preserve familiar roles and ways of relating to each other
    • Help people find meaning

Family stress

  • Psychosocial considerations
    • As care needs increase families may feel overwhelmed and inexperienced in meeting these new demands
    • Growing reality of death
  • Helpful strategies
    • Assess coping
    • Explore people’s feelings, abilities to manage, and available or needed resources
    • Explore and encourage strategies for self-care

PPS 20-10%

Communication

  • Psychosocial considerations
    • Dialogue between patients and families may change dramatically
    • Dying people may only speak a few words, use metaphorical language, or not have the capacity to speak
    • Families may struggle to comprehend what is said, know how to communicate, or conclude the person is ‘already gone’
  • Helpful strategies
    • Normalize changes in communication
    • Support continued communication – give people ideas about how to elicit a response from and how to respond to the dying person
    • Encourage gentle touch/use of words
    • Encourage self care for caregivers

Expectations about dying

  • Psychosocial considerations
    • Prior experiences and/or perceptions about death and dying will influence how people cope during this time
  • Helpful strategies
    • Explore people’s expectations or hopes
    • Ask about prior experiences with dying and death
    • Ask about people’s hopes and fears about the time of death - e.g., do they hope to be present or do they anticipate any fears?

PPS 0%

Nature of death

  • Psychosocial considerations
    • Moment of death is unique for every dying person - contextual
    • Though death is expected, families may have questions about causation or things that may have been observed/experienced during dying process
  • Helpful strategies
    • When possible, review events prior to death
    • Give families chance to describe what happened and how they responded
    • People may need reassurance for the care they provided
    • Explain and explore perspectives on any unsettling or frightening events or experiences
    • Encourage people to articulate their own perspectives of experience

Family reactions

  • Psychosocial considerations
    • Wide range of human responses, emotions, needs and rituals at time of death and afterwards
  • Helpful strategies
    • Normalize different responses within the family
    • Be aware of signs of shock and/or trauma after the death
    • Identify support systems and plan of support and follow-up

SOURCES/REFERENCES

  1. Psychosocial care and the Palliative Performance Scale. Adapted with permission from: Downing GM. Medical care of the dying. 4th ed. Victoria (BC): Victoria Hospice Society; 2006.
  2. Bruera E, De Lima L, Wenk R, Farr W, editors. Palliative care in the developing world: principles and practice. 1st ed. Houston (TX): International Association for Hospice and Palliative Care; 2004.
  3. Cairns M, Thompson M, Wainwright W. Transitions in dying and bereavement: a psychosocial guide for hospice and palliative Care. Victoria (BC): Victoria Hospice Society; 2003.
  4. Davies B, Reimer JC, Martens N. Family functioning and its implications for palliative care. J Palliat Care 1994;10(1):29-36.
  5. Downing GM, Wainwright W, editors. Medical care of the dying. 4th ed. Victoria (BC): Victoria Hospice Society; 2006.
  6. Librach L, Gifford-Jones W. Ian Anderson continuing education program in end-of-life care. Module 6: psychological symptoms. [Online]. Available from: URL:http://www.cme.utoronto.ca/ENDOFLIFE/Modules/PSYCHOLOGICAL%20SYMPTOMS%20MODULE.pdf
  7. Storey P, Knight C. Pocket guide to hospice/palliative medicine. Gainesville (FL): American Academy of Hospice and Palliative Medicine; 2003.
  8. Storey P, Knight C. UNIPAC Two: Alleviating psychological and spiritual pain in the terminally ill. Gainesville (FL): American Academy of Hospice and Palliative Medicine; 1997.
  9. Werth J, Blevins D, editors. Psychosocial issues near the end of life: a resource for professional care providers. Washington (DC): American Psychological Association; 2006.

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