Distress

KEYPOINTS

  • Distress is a common occurrence throughout the illness continuum, from diagnosis and treatment to palliative care
  • Experiences of distress are related to the physical, psychosocial, cultural and spiritual contexts that impact a person’s ability to cope
  • Distress is also influenced by type, stage and site of disease
  • Distress can occur along a continuum of severity and range from common, normal feelings to problems that become disabling
  • Anxiety and depression are common forms of distress and may benefit from pharmacological and nonpharmacological approaches (see below)
  • Hope is a powerful coping mechanism and tool of support for some people
  • Distress rating scales (verbal, numerical, and visual) are simple and efficient
  • The use of relaxation, breathing exercises and other therapeutic techniques are helpful interventions that can be easily taught to patients and family/caregivers (see Therapeutic Interventions)
  • Effective communication and on-going assessment are key to knowing how to support people in their experiences of distress

CONSIDERATIONS

Distress: Contributing Factors

Physical

  • Loss/change of bodily functions and body image
  • Unrelieved pain or fear of pain
  • Unrelieved/persistent/re-occurring symptoms

Psychosocial

  • Understanding of disease, treatment and symptom management options
  • Loss/change in control, independence, dignity, sense of belonging, hope, empowerment, future
  • Loss/change in relationships and social connections
  • Isolation, stigmatization, abandonment from loved ones and community
  • Poverty and financial hardship
  • Loss/change of job, social position, family role
  • Feelings of being a burden on family/caregivers
  • Fears and concerns for surviving family/caregivers
  • Pre-existing mental health issues

Cultural

  • Differences in beliefs/attitudes around illness, suffering, loss, death
  • Language barriers (e.g., information is not understood) (see Communication)
  • Influence of gender and social roles/expectations

Spiritual

  • Loss of participation in spiritual practices and rituals
  • Changes in relationship to higher power
  • Absence of spiritual mentor or community
  • Self-blame - suffering as punishment
  • Existential questioning - meaning of life and death

Feelings and emotions that may be associated with distress


Anxiety Depression Sadness Hopelessness
Guilt Withdrawal Anger Frustration
Fear Grief Pain Helplessness
Powerlessness Panic Abandonment Isolation
Nervousness Worry Loss of interest Worthlessness

Physiological factors that may be associated with distress


Pain Nausea Fatigue Insomnia
↓ Mobility ↓ Ability for self care Dyspnea Mouth sores
Appetite Indigestion Constipation Diarrhoea
Fevers Skin irritation Congestion Swelling
↓ Sexual desire Appearance Memory loss ↓ Concentration

STRATEGIES

Assessing the severity of distress and the range of biopsychosocial/spiritual issues that may be contributing factors can be challenging. Assessment of distress is an on-going process throughout the care continuum.
Everything that is expressed and experienced is important to listen to, support and help alleviate if desired.

Distress Tool

A helpful tool for assessing a person’s experiences of distress is the use of a numerical scale (0-10, with 10 being the highest and 0 being the lowest) or some other scale that makes sense to the person, such as colors, symbols etc. Invite the patient to indicate on the scale the level of distress they have been experiencing that day and over the past week within the various areas of their life (e.g., physical, psychological, spiritual, etc.). A response of 5 or more is an indication to the health care team that further investigation and support may be needed. It is also beneficial to reassess levels of distress after meeting with the patient, as the patient may feel better just for talking with you. This might help them identify their own strengths and coping mechanisms. This will also help identify what further support may be helpful (see Therapeutic Interventions).

Questions to facilitate investigation of distress

  • “On a scale of 0-10, with 10 being the highest, how would you rate your level of distress at this moment? Over the past week?”
  • “What areas of your life are you finding most distressing (e.g., personal, physiological, psychological, social, spiritual domains)?"
  • “Tell me about how you have been experiencing distress (e.g., physical sensations, emotions, changes in sleep)?"
  • “How do you cope with this distress? What are your strengths/find helpful? What do you find challenging?”
  • “At the beginning of our conversation you had said that your level of distress in this area was rated at …. How has that changed for you during this conversation?"
  • “What would be helpful in supporting you with your distress now? In the future?”
  • “What are the most important things (people, conditions, etc.) that are currently helping your quality of life?”

SOURCES/REFERENCES

  1. Bultz B, Carlson L. Emotional distress: the sixth vital sign in cancer care. J Clin Oncol 2005;23(26):6440-1.
  2. Chochinov H, Breitbart W. Handbook of psychiatry in palliative medicine. New York: Oxford University Press; 2000.
  3. Doyle D, Woodruff R. International Association for Hospice and Palliative Care. IAHPC manual of palliative care. [Online]. 2008; Available from: URL:http://www.hospicecare.com/manual/toc-main.html
  4. Jacobsen PB, Donovan KA, Trask PC, Fleishman SB, Zabora J, Baker F et al. Screening for psychologic distress in ambulatory cancer patients. Cancer 2005;103(7):1494-1502. http://www.ncbi.nlm.nih.gov/pubmed/15726544
  5. 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
  6. Murillo M, Holland JC. Clinical practice guidelines for the management of psychosocial distress at the end of life. Palliat Support Care 2004;2(1):65-77. http://www.ncbi.nlm.nih.gov/pubmed/16594236
  7. National Comprehensive Cancer Network. Distress treatment guidelines for patients. [Online]. Available from: URL:http://www.nccn.org/index.asp
  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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