end of life occupations.com.pptord1.occupationaltherapy.com/content/c3000/c3040/...oct 08, 2015 ·...
TRANSCRIPT
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End of Life OccupationsHeather Javaherian‐Dysinger, OTD, OTR/L
Department of Occupational Therapy
OccupationalTherapy.com October 8, 2015
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Objectives
• Discuss philosophy of hospice and palliative care
• Describe goal of intervention at end of life
• Identify various intervention approaches for end of life using case example
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Chronic illness
• Aging population
– 2030 - persons older than 65 years are rising
– We are living longer…• living longer with chronic illness and advanced
technologies that prolong life[13]
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Palliative & Hospice
• Targets people with chronic conditions– Multiple chronic conditions
– Functional impairments
– Dual eligibility for Medicare and Medicaid
– Patients using
hospital services
– Patients in last year
of life
Palliative Care Focuses on improving life and providing comfort to
people of all ages with serious, chronic, and life-threatening illnesses.
Prevents or treats symptoms and side effects of disease and treatments
These diseases may include cancer, congestive heart failure, kidney failure, chronic obstructive pulmonary disease, AIDS, and Alzheimer's, among others.
Interprofessional approach – doctor, nurses, therapists, social workers, chaplains
http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000536.htm
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Palliative Care
“an approach that improves
quality of life for patients and their families facing the problems associated with life-threatening illness,
through the prevention
and relief of suffering by means of early identification and impeccable assessment and
treatment of problems, including physical,
psychosocial, and spiritual” (WHO, 2011).
Hospice“Reaffirmation of living with dignity and hope”
(Doyle, 1998)
Aging in Place
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“Despite having the highest per capita spending on healthcare in the world, multiple studies
have demonstrated that
seriously ill patients and their families
receive poor-quality medical care
characterized by unrelieved symptoms,
unmet psychosocial needs, and increased family caregiver and financial burden.”
[2,8,9,13,15]
Health care Reform
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Health care reform: Implications for Palliative & Hospice Care
• Palliative and hospice care– Established trends of reducing overall healthcare
costs
– Improves quality of life
of patient and family
• ACA offers opportunities for palliative care and hospice programs to participate in the planning, development, and implementation of new delivery and payment models such as accountable care organizations (ACOs), patient-centered medical homes, and the bundling of payments for a single episode of healthcare.[2]
• These models aim to improve the quality of care and control the costs for high-need, high-risk patient populations by focusing efforts on the very approaches to care and quality outcomes that palliative and hospice care has long demonstrated.
• Payments may shift to a focus based more on quality of care.[2,5,17,18]
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Physician Orders for
Life‐Sustaining Treatm
ent
END OF LIFE AND OCCUPATION
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“Occupations provide a means of self-expression and engagement granting meaning and purpose
to the person and family as they prepare for death
and the transition on.”-Heather Javaherian-Dysinger, 2012
“Doing the things that matter: Continuing life”
“Getting everything in order:
Preparation for death”
“It takes so long to die: Waiting”
“A gentle goodbye: Death and after-death”
Jacques & Hasselkus, 2004, pp 48-50; AOTA (2005). Occupational Therapy and Hospice
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Occupation & Identity
• It is through doing that we are, that we become.(Wilcock)
• Occupation (Christiansen, 1999; Hasselkus, 1996; Hunter, 2008; Yerxa, 1994)
– Provides purpose
– Organizes time and space
– Organizes world we live in
– Expresses identity
• Participation
Perspective of Death
• What is the person’s perception or beliefs of death?
• What is the family’s perception or beliefs of death?
o Natural event in lifespan
o Celebration – Spiritually at
peace
o Fear
o Other
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“Happiness is the meaning and the purpose of life, the whole aim and end of human
existence.”-Aristotle
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End of Life (Bye, Llewellyn, & Christl, 2008)
Dying old is expected norm
Losses along life’s path
Neimeyer et al (2004), acceptance of one’s
death associated with greater life satisfaction
and stronger religious belief (as cited in Bye et al, 2008)
Spiritual questioning natural part of aging process as one gets closer to end of life
Fear of death decreases from mid-life to old age (Neimeyer, 2004)
Elders still fear loss of control leading up to death—process of dying
End of Life (Bye, Llewellyn, & Christl, 2008)
Terminal illness, even in elderly can be traumatic
Working with people at end of life is an honor and a challenge
Need for coping
Conflict with rehabilitative paradigm
Quality of life
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End of Life (Bye et al, 2008)
Good death: Process or style of dying– Awareness of dying
– Social adjustments and
personal preparations
– Public preparation
– Making farewells
Integrity or Despair?
• Feelings of peace with life vs feelings or turmoil, regret
• Contributing factors for patients and caregivers:
– Loss of ROM
– Fatigue
– Inability to maintain life roles (87%)
(Kealey & McIntyre, 2004)
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Occupations
• Participation in meaningful occupations provides a sense of control and balance as one reconciles with end of life
• Kealy & McIntyre (2004)
– Going outdoors
– Taking a bath
– Visiting friends
– Engaging in leisure activities
“Rehabilitation in Reverse”(Briggs, 1999)
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Bonder & Dal Bello-Haas, 2009
AOTA, 2011
Role o
f Occu
patio
nal Th
erapy in
End of Life C
are
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Role of the Occupational Therapist
• Participation in occupations
– Assessing and modifying leisure interests
– Self‐care
– Meals
– Family rituals and routines• Holidays and celebrations
• Family education
– Transfers, mobility, routines, emotional support
– Options for services
• Positioning & Skin Protection
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The Role of Occupational Therapy
• Adaptive Equipment & Mobility
• Emotional & Spiritual support
• Relationships & Sexuality
• Home modifications and design for end of life experience
• Legacy building
• Emotional & spiritual support– A deep experience of meaning
(Urbanowski & Vargo, 1994)
– Experiencing meaning is a source of motivation for living life (Frankl, 1959)
– Yet, experiencing meaning can also give one strength to accept death, and grow in one’s spiritual journey.
Role of the Occupational Therapist
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Jeyasingam et al, 2008, Australian Journal of OT
(Cooper & Littlechild, 2004)
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Can we bill for OT at end of life?
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If you don’t take the chance to live life, what can you say at the end of it?
-Naveen Andrews
Building a Legacy
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Adapting Occupations for End of Life
April 2008
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May 2008
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CASE STUDY EXAMPLES (AOTA, 2011)
AOTA, 2011
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AOTA, 2011
A different kind of Hope
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A gift to her family
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References• Allen, R. S. (2009). The legacy project intervention to enhance meaningful family interactions: case examples. American
Journal of Occupational Therapy, 32(2), 164-176. doi:10.1080/07317110802677005
• Allen, R.S., Hilgeman, M.M., Ege, MA, Shuster, JL, & Burgio, L.D. (2008). Legacy activities as interventions approaching the end of life. Journal of Palliative Medicine, 11(7), 1029-1038, DOI: 10.1089/jpm.2007.0294.
• American Occupational Therapy Association. (2011). The role of occupational therapy in end-of-life care. American Journal of Occupational Therapy, 65(6), 1-15.
• Ando, M., & Morita, T. (2010). Efficacy of the structured life review and the short-term life review on the spiritual well-being of terminally ill cancer patients. Health, 2, 342–346.
• Ando, M., Morito, T., Okamoto, T., & Ninosaka, Y. (2008). One-week short-term life review interview can improve spiritual well-being of terminally ill cancer patients. Psycho-Oncology, 17, 885–890.
• Bevans, M., & Sternberg, E.M. (2012). Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Journal of the American Medical Association, 307(4), 398-403. doi:10.1001/jama.2012.29
• Hasselkus, B.R. (2011). The meaning of everyday occupation. Thorofare, NJ: Slack Incorporated.
• Hospice foundation of America. (2013). What is hospice. Retrieved from http://www.hospicefoundation.org/whatishospice
• Jeyasignam, L., Agar, M., Soares, M., Plummer, J., & Currow, D. (2008). A prospective study of unmet activity of daily living needs in palliative care inpatients. Australian Occupational tTherapy Journal, 55, 266-272. doi: 10.1111/j.1440-1630.2007.00705.x
• Javaherian, H., & Hedgecock, A. (2013). Community-based Occupational Therapy Evaluation. Loma Linda University. Loma Linda University.
• Kealey, P. & Mcintyre, I. (2005). An evaluation of the domiciliary occupational therapy service in palliative cancer care in a community trust: a patient and carers perspective. European Journal of Cancer Care, 14, 232-243.
• National Hospice and Palliative Care Organization. (n.d.a). Hospice care. http://www.nhpco.org/about/hospice-care
• Pizzi, M.A. (1984). Occupational therapy in hospice care. The American Journal of Occupational Therapy, 38(4), 252-257. doi: 10.5014/
• Renz, M., Mao, S.M., Bueche, D., Cerny, T., & Strasser, F. (2013). Dying is a transition. American Journal of Hospice and Palliative Medicine, 30(3), 283-290. doi: 10.1177/1049909112451868
• Thompson, B. (1991). Occupational therapy with the terminally ill. In J. Kiernat (Ed.), Occupational therapy and the older adult (pp. 324-337). Gaithersburg, MD: Aspen.
• Trump, S. M., Zahoransky, M. & Siebert, C. (2005). Occupational therapy and hospice. The American Journal of Occupational Therapy, 59(6), 672-675
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