4/14/2013

Enriching End-of-Life Care: OT’s Role in Facilitating Active Participation in Life AOTA 93 rd Annual Conference David Benthall, MS, OTR/L Allison Darwin Calhoun, MS, OTR/L Tim Holmes, OTR/L, COMS

As you approach the end of life what will be most important to you?  To do _______________________________________  To be________________________________________  To experience_________________________________  To share_____________________________________  To finish_____________________________________  To remember_________________________________  To pass along_________________________________  To say_______________________________________  To become___________________________________ (Coppola, 2010)

Death and the client experience Individual Experience  People experience death in

different ways  People cope with death in

different ways  As individuals come to terms

with their emotions and beliefs about life and death, the notion of where to invest time brings on new meaning

Transactional Experience  Considering the broader picture  Person, Context, Occupation  Considering:  Client context  Family Caregivers  Family Situation

Inverse relationship: Not only how death impacts clients but how clients impact and control the dying process (Dickie, Cutchin, & Humphry, 2006)

1

4/14/2013

Learning Objectives  Understand occupational therapy’s role in end-of-life-

care and strategies to enhance clients’ active participation in life.  Identify various reimbursement systems and the

policies that support occupational therapy in end-oflife care.  Discuss occupational therapy’s approach to

documentation and goal writing in end-of-life care.

Why is this topic important for OT practice?  Death as a universal experience  Gap in current practice  Importance of occupation in all stages of life  Active Participation in Life

 Use of occupation to promote quality of life

AOTA Living Life to Its Fullest  “When occupational

therapy says the impossible is possible, we help people live life to its fullest. When occupational therapy sets unreachable goals and makes them reachable, we help people live life to its fullest.” Supporting clients live life to it’s fullest through their entire life (AOTA, 2012)

2

4/14/2013

Why is occupation important when considering end-of-life issues? Occupation is the “missing link” in the interdisciplinary puzzle Occupation is positively linked to well-being because it:    

Fulfills a basic human need to do Provides a sense of purpose Provides a means to organize time and space Is a medium for the development and expression of identity

(Christiansen, 1999)

Case Example: Mr. W  Occupational Profile:  88 yo gentleman  World War II Veteran  Husband  Father: 2 children  Avid Gardner  Electrician  Problem Solver

Occupational Perspective of Health Doing Being Becoming

(Wilcock, 2006)

3

4/14/2013

Traditional OT Approach Independence Prior Level of Functioning Remediation Rehabilitation Potential

Assessment

Traditional OT Approach

OT Approach to End-ofLife Care

Independence

Assessment Prior Level of Functioning

Adaptation Remediation Rehabilitation Potential

Compensation

Modification

Assessment

Quality of Life

Traditional OT Approach

OT Approach to End-ofLife Care

Independence

Assessment Prior Level of Functioning

Adaptation Remediation Rehabilitation Potential

Assessment

Compensation

Modification Quality of Life

Outcome Enhanced participation in meaningful occupations

4

4/14/2013

What does occupational therapy look like with clients at the end of life?  Typical approach vs. non-traditional approach to OT

practice  Rehabilitation vs. Focus on Quality of Life  Goal for occupational therapy services is to optimize

well-being and quality of life through occupational engagement  Focus of OT intervention focuses on both:  Emotional and Psychological Performance (Subjective)  Physical Performance (Objective) (Pizzi, 2010)

Making the Connection Participation in meaningful occupations

Enhanced Quality of Life

Domain & Process of Occupational Therapy Practice

Case Study: Mr. P • Yo gentleman • PhD college professor: marketing and economics • Husband • Father: 2 children

• • • • •

Model Airplane Creator Interest in Technology Traveler Problem Solver “Knowledge Seeker”

5

4/14/2013

“…the outcome is not about independence or permanent rehabilitation to a normal life– hallmarks of traditional occupational therapy. It is about occupational therapists helping clients to realize their goals to connect with life, and people in their life, on a level beyond illness and receipt of care. The achievement of this outcome affirms clients’ lives.” (Bye, 1998)

Occupational Therapy Skill Set  What skills does occupational therapy bring to the

table that is different than other professions?

 Might utilize a different approach, but still using the

same therapeutic skills.

 OTPF:  Broad range of occupations  Client Factors  Activity Demands  Performance Skills  Performance Patterns  Context Environment (AOTA, 2008)

OTPF: Intervention Approaches  Create, Promote (Health Promotion)  Establish, Restore (Remediation, Restoration)  Maintain  Modify (Compensation, Adaptation)  Prevent (Disability Prevention)

(AOTA, 2008)

6

4/14/2013

OTPF: Intervention Types  Therapeutic Use of Self  Therapeutic Use of Occupations & Activities  Occupation-based activities  Purposeful activities  Preparatory Methods

 Consultation Process  Education Process  Advocacy

(AOTA, 2008)

OTPF: Outcomes  Prevention

 Occupational

Performance

 Quality of Life

 Adaptation

 Role Competence

 Health and Wellness  Participation

 Self-Advocacy  Occupational Justice

(AOTA, 2008)

Hospice Care  Hospice provides support and care for persons in the

last phases of incurable disease so that they may live as fully and as comfortably as possible Recognition that the dying process is a normal process of living Care provided for the “whole person,” including: • Physical

• Emotional

• Spiritual

• Social (Centers for Medicare & Medicaid Services, 2010)

7

4/14/2013

Interdisciplinary Team  Non-Traditional Team

Members:  Nurses  Social Workers  Chaplains  Bereavement Counselors  Physicians  Hospice Aide  Volunteers  Therapists  Palliative Care Team  Ethics Committee

Hospice Medicare Benefit  Hospice care is an elected benefit covered under

Medicare Part A for a beneficiary who meets all of the following requirements:  Eligible for Medicare Part A (Hospital Insurance)  Physician certification that you’re terminally ill and have

6 months or less to live  Signed statement electing hospice care instead of other

Medicare-covered benefits to treat your terminal illness  Receive care from a Medicare-approved hospice program (Centers for Medicare & Medicaid Services, 2010)

Hospice Medicare Benefit Coverage  Doctor services

 Hospice Aide

 Nursing care

 PT/OT/ST services

 Medical equipment (wheelchairs, hospital bed, adaptive equipment, etc.)

 Dietary counseling

 Medical supplies  Medication for symptom

control or pain relief

 Bereavement

counseling  Short-term inpatient

care  Short-term respite care (Centers for Medicare & Medicaid Services, 2010)

8

4/14/2013

Hospice Reimbursement  Hospice agencies paid daily rate for each day a patient

is enrolled in the Hospice benefit  Daily payments made regardless of amount of services

provided  Hospice is paid set amount whether or not a direct

service is provided that day  Payments made based on level of care required to

meet patient/family needs:  Routine home care  Continuous home care  Respite inpatient care  General inpatient care (Centers for Medicare & Medicaid Services, 2010)

Hospice Medicare Benefit  Medicare Benefit Policy Manual: “physical therapy, occupational therapy, and speech– language pathology services may be provided for purposes of symptom control or to enable the individual to maintain activities of daily living and basic functional skills.” (Chapter 9, Sec. 40.1.8) In addition to the hospice core services (physician services, nursing services, medical social services, and counseling), PT/OT/ST services must be provided by the hospice agency, either directly or under arrangements, to meet the needs of the patient/family. (Chapter 9, Section 40.5) (Centers for Medicare & Medicaid Services, 2010)

Common Misconceptions  What if I do not work for a hospice agency?  What if my OT skilled services aren’t contracted

through a hospice agency?  Does Medicare pay for therapy services for clients

approaching the end of life if I work in skilled nursing, home health, long term care, hospitals, and community-based practices?

9

4/14/2013

Medicare Benefit Policy Manual Chapter 15, Section 220,230  Are the skilled services “reasonable and necessary?”  “Rehabilitative Therapy. The concept of rehabilitative

therapy includes recovery or improvement in function and, when possible, restoration to a previous level of health and well-being.”

 “While a beneficiary’s particular medical condition is a

valid factor in deciding if skilled therapy services are needed, a beneficiary’s diagnosis or prognosis should never be the sole factor in deciding that a service is or is not skilled. (Centers for Medicare & Medicaid Services, 2010)

Medicare Benefit Policy Manual Chapter 15, Section 220,230  “Skilled therapy may be needed, and improvement in a patient’s

condition may occur, even where a chronic or terminal condition exists. For example, a terminally ill patient may begin to exhibit selfcare, mobility, and/or safety dependence requiring skilled therapy services. The fact that full or partial recovery is not possible does not necessarily mean that skilled therapy is not needed to improve the patient’s condition […] The deciding factors are always whether the services are considered reasonable, effective treatments for the patient’s condition and require the skills of a therapist, or whether they can be safely and effectively carried out by nonskilled personnel without the supervision of qualified professionals.”

(Centers for Medicare & Medicaid Services, 2010)

10

4/14/2013

An Example Along a Continuum of Care • • • • • •

78 Year-old Female Wife Mother and Grandmother Respected Friend Former Medical Social Worker Volunteer

• • • • • •

Parkinson’s Disease Cancer Survivor Celiac Disease Spiritual Optimistic Determined

• Occupational therapist first established therapeutic relationship when client lived in an independent living apartment with her husband • Addressed safety in the home environment, modifications, and caregiver education • Continued therapeutic relationship as client’s Parkinson’s Disease progressed and her need for assistance increased • Guided client and her husband in recognizing the need for a move to Assisted Living to enable greater and more consistent assistance • Deepened therapeutic relationship when client moved to the Health Care Nursing Center • Addressed caregiver education, safety, functional mobility, environmental adaptation, and meaningful occupational engagement as end of life approached

Client’s Perspective on Her Life and Her Wishes . . .OT’s Guidebook for Enabling Blessed Spirit of My Life “Blessed Spirit of my life, give me strength through stress and strife; Help me live with dignity, let me know serenity. Fill me with a vision. Clear my mind of fear and confusion. When my thoughts flow restlessly, let peace find a home in me. Spirit of great mystery, hear the still, small voice in me. Help me live my wordless creed as I comfort those in need. Fill me with compassion. Be the source of my intuition. Then, when life is done for me, let love be my legacy.”

Creating Sample Goals Using the Case of Mr. P  Unable to safely transfer out of hospital bed so that he

could access his home and enjoy meaningful occupations  Meal with wife  Working on model airplanes  Going outside  Reading

 Type of transfer method determined due to low

exertion tolerance  Positioning out of bed a chair that promoted function

and occupational engagement.

11

4/14/2013

How Do We Write the Goals to Demonstrate Necessity and Allow for Accomplishment?  First, focus on and define the end objective.  “decreased caregiver assist”  “improved quality of life”  “increased meaningful occupational engagement”  “improved/increased participation in . . .”  “improved ability to . . .”  “increased autonomy for . . .”

How Do We Write the Goals to Demonstrate Necessity and Allow for Accomplishment?  Second, determine what action will lead to

accomplishment of the end objective.  “Transfer from bed to wheelchair with caregiver assist”  “Eat at kitchen table with wife while positioned in custom

wheelchair”  “Demonstrate energy conservation techniques ”  “Safely use ramp to get wheelchair into the house”

How Do We Write the Goals to Demonstrate Necessity and Allow for Accomplishment?  Third, determine how to specifically measure the

action that will lead to the end objective.  “Transfer from bed to wheelchair using hoyer lift with

100% safe demo from caregiver for assist”  “Eat at least 50% of meal at kitchen table with wife while

positioned in custom wheelchair”  “Demonstrate 2 energy conservation techniques described

by OT with less than 2 verbal cues ”  “Use ramp to get wheelchair into the house with

independent demonstration of safe technique from caregiver”

12

4/14/2013

How Do We Write the Goals to Demonstrate Necessity and Allow for Accomplishment?  Fourth, establish a time frame or number of sessions

in which the end objective will be accomplished.  “After three sessions with client and caregiver . . .”  “Within two weeks, client will demonstrate . . .”  “After three successful trials, client will . . .”  “Client will demonstrate improved activity stamina to 30

minutes for successful participation in . . .”

Final Thoughts…  Making connections with team members  Palliative care team, chaplains, nurses, etc.  Contract with local Hospice agency - PRN needs

 Continuing education opportunities  Literature review portfolio of existing research  Offer in-service to local Hospice about role of OT at end of life

 Confidence  Therapeutic use of self, personal interactions, communication

References 

  



    

American Occupational Therapy Association. (2008). Occupational therapy practice framework: Domain and process (2nd ed.). American Journal of Occupational Therapy, 62(6), 625–683. American Occupational Therapy Association. (2011). T he role of occupational therapy in end-of-life care. American Journal of Occupational Therapy, 65(Suppl.), S66--S75. Benthall, D. & Holmes, T. (2011). End-of-life care: Facilitating meaningful occupations. OT Practice, 16 (9), 7-10. Bye, R. (1998). When clients are dying: Occupational therapy perspectives. Occupational Therapy Journal of Research, 18, 3–24. Centers for Medicare and Medicaid Services. (2010). Coverage of hospice services under hospital insurance. In Medicare benefit policy manual. (rev. 121). Available online at https://www.cms.gov/manuals/Downloads/bp102c09.pdf Cour, K., Nordell, K., & Josephsson, S. (2009). Everyday lives of people with advanced cancer: Activity, time, location, and experience. OTJR: Occupation, Participation and Health, 29, 154-162. Dickie, V., Cutchin, M., & Humphry, R. (2006). Occupation as transactional experience: a critique of individualism in occupational science. Journal of Occupational Science, 13, 83-93. Hodgkinson, K., & Gilchrist, J. (2008). Psychosocial care of cancer patients : A health professional's guide to what to say and do. Ascot Vale, Melbourne, Australia: Ausmed Publications. Hunter, E. G. (2008a). Beyond death: Inheriting the past and giving to the future, transmitting the legacy of one’s self. Omega: Journal of Death & Dying, 56, 313-329. Hunter, E.G. (2008b). Legacy: The occupational transmission of self through actions and artifacts. Journal of Occupational Science, 15, 48-54.

13

4/14/2013

References cont.   



 

Jacques, N. D., & Hasselkus, B. R. (2004). The nature of occupation surrounding dying and death. OTJR: Occupation, Participation and Health, 24, 44-53. Law, M. (2002). Participation in the occupations of everyday life. American Journal of Occupational Therapy, 56, 640-649. Lehrer, S. (2004). The language of disability. OT Practice. Retrieved from http://www.aota.org/Pubs/OTP/1997-2007/Features/2004/f-012604.aspx. Lyons, M., Orozovic, N., Davis, J., & Newman, J. (2002). Doing–being–becoming: Occupational experiences of persons with life-threatening illnesses. American Journal of Occupational Therapy, 56(3), 285–295. Marcoux, J.S. (2001). The ‘Casser Maison’ ritual: Constructing the self by emptying the home. Journal of Material Culture, 6, 213-235. National Cancer Institute. (2003). Advanced cancer: Living each day. Bethesda, MD: Author.



Pizzi, M. (2010). Promoting wellness in end-of-life care. In M. Scaffa, M. Reitz, & M. Pizzi (Eds.), Occupational therapy in the promotion of health and wellness. Philadelphia, PA: F.A. Davis Company.



Rankin, J. (2008). Rehabilitation in cancer care. Chichester, UK ;: Wiley-Blackwell. Staton, J., Shuy, R., & Byock, I. (2001). A few months to live: Different paths to life’s end. Washington, D.C.: Georgetown University Press. Trump, S.M., Zahoransky, M., & Seibert, C. (2005). Occupational therapy and hospice. The American Journal of Occupational Therapy, 59, 671-675. Wilcock, A. A. (2006). An occupational perspective of health (2nd ed.). Thorofare, NJ: Slack Incorporated.

  

Contact Information

David Benthall Hospice & Palliative Care Center of Alamance-Caswell Burlington, NC [email protected]

14