Lessons from the Field: Occupational Therapy in Hospice AOTA Conference, April 5, 2014

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1 AOTA 2014: OT IN HOSPICE 1 Lessons from the Field: Occupational Therapy in Hospice AOTA Conference, April 5, 2014 Presenters: Carlos Alaniz, OTR/L (Carlos.Alaniz@providence.org) Deborah Cruzen-Baird, OTR/L (Deborah.CruzenBaird@providence.org) Tatiana Kaminsky, PhD, OTR/L (tkaminsky@pugetsound.edu) Stephanie Sahanow, OTR/L, ATP (Ssahanow@gmail.com) Hospice is first and foremost about quality of life. And in my interpretation, occupational therapists help people to regain the ability to perform those activities that are most meaningful to them in their daily lives. They help with those functions we might not appreciate until they are lost. It is therefore only natural that OT is a key element to excellent hospice care for many individuals. a physician specializing in hospice and palliative care. Having occupational therapy available to people in hospice is required by the Centers for Medicare & Medicaid! From the Conditions of Participation (CoP) by the Centers for Medicare & Medicaid regarding required services in hospice ( Guidance/Legislation/CFCsAndCoPs/Hospice.html): The CoPs are the health and safety requirements that all hospices are required to meet. They are a flexible framework for continuous quality improvement in hospice care and reflect current standards of practice Condition of participation: Core services. A hospice must routinely provide substantially all core services directly by hospice employees. These services must be provided in a manner consistent with acceptable standards of practice. These services include nursing services, medical social services, and counseling. The hospice may contract for physician services Condition of participation: Physical therapy, occupational therapy, and speechlanguage pathology. Physical therapy services, occupational therapy services, and speech-language pathology services must be available, and when provided, offered in a manner consistent with accepted standards of practice.

2 AOTA 2014: OT IN HOSPICE 2 Occupational Therapy Goals in Hospice Occupational therapy goals in hospice can look different than they do in other areas of practice. One of the biggest differences is that goals are not written for improvement but to help the client and family find grace in the face of loss and to provide gentle support and guidance. Goals are also not measurable in the same way. Success is measured by the comfort with which the client and the family can approach the dying process. There are several general categories for goals (though there can be others depending on the needs of the client). These categories, with examples of goals are: Legacy work: Often clients want to create something to give to family and friends as a way to remember them. Examples of legacy projects are living wills (with thoughts and wishes for those left behind), collections of favorite recipes, photos, etc. Work in this area also aids with the therapist s role in providing the client and family with ways to continue to engage with each other in supportive ways, especially as roles are lost and adjusted. o pt satisfied with living will (or whatever legacy project they choose) Caregivers: The needs of caregivers are a major focal point for all who work in hospice. Occupational therapists work with caregivers to train them with the skills they need to care for their loved one, addressing safe positioning, functional mobility including transfers, ADL, and use of adaptive equipment. Occupational therapy can also be instrumental in assisting family in hearing and honoring the goals of the client. o Caregiver will be able to safely assist with all transfers and bed mobility. Equipment needs: Hospice occupational therapists help with ordering, setting up, and training clients and caregivers with adaptive equipment. This can include specialized beds and mattresses, hoyer lifts, bedside commodes and other bathroom equipment, wheelchairs and seating systems, etc. o Pt has all needed equipment in the home. o Caregiver able to use and care for all equipment to provide optimal care for the pt in the home. Last goals: Occupational therapists in hospice help clients to identify and achieve the final goals in their lives. Occupational therapists use their activity analysis skills to adapt the task and/or the environment to enable the client to engage with these last valued occupations. o Pt will sit in the garden one time with assistance from family and hired caregiver.

3 AOTA 2014: OT IN HOSPICE 3 Pain and comfort: The hospice team as a whole, including occupational therapists, focus work on pain relief, considering not only physical pain, but spiritual and psychological pain as well. o Pt. will be able to participate in in guided imagery visualization exercise for pain management. Energy conservation: Energy conservation is essential so that clients are able to use their energy to achieve last goals and complete legacy work. o Pt will use energy conservation and pacing techniques to facilitate spending time with friends Maintaining strength and endurance: Exercise programs can be provided to maintain clients strength and endurance for as long as possible. It is essential to remember that these programs are not given with the primary goal of improving strength and helping the client get better. Instead they are given as a way to enable clients to participate in valued activities longer. They are also given only when desired by the client. Exercise programs must be balanced with energy conservation. o Pt. will perform exercise program to maintain independence in personal ADL, pacing to have maximum enjoyment in daily activities. Skin and positioning: Good skin integrity and proper positioning are essential for quality of life and comfort, the two overarching goals in hospice. Occupational therapists contribute important information and skills in these areas, including looking at positioning in bed and chairs, acquiring seating systems for wheelchairs, and recommending specialized mattresses for beds. It is also important to consider PROM programs and how they are being implemented. Often, performing the PROM program can actually cause more discomfort. Careful assessment and instruction to the family related to positioning and comfort is essential. o Good fit of roho cushion. Caregiver able to maintain roho cushion. o Family to position pt. for max. comfort and to prevent/limit contractures. Safety/fall prevention: This is an essential area for hospice occupational therapists to consider. Training with transfers and functional mobility is a major focal point during treatment. Safety and injury prevention for both the client and the caregivers is the goal. o Wheelchair brakes used for all transfers. Gait belt used for all ambulation and transfers.

4 AOTA 2014: OT IN HOSPICE 4 ADL: ADL is considered as it relates to last goals, comfort, and quality of life. o Caregiver understands diet restrictions and is able to feed pt safely. Maintenance of mobility and edema management: Clients at the end of life may be dealing with edema and the resultant mobility limitations. In hospice, edema management often includes elevating and finding the right footwear. o Pt. to maintain his mobility in the home and edema to be maintained at a pain free level. Dementia care: If a client has dementia, family can struggle with how to provide care safely. This can include managing agitation. In this case, the role of the occupational therapist is to help the caregivers develop the skills they need to provide care in a manner that is safe for both the client and the caregivers. o Family to provide personal care for pt. and pt. will not become agitated or strike out at caregiver. Final conversations: Occupational therapists, along with the rest of the hospice team, can help to facilitate final conversations between the client and family members. The ideal statements to make include: o For anything that I have done to hurt you, I ask for your forgiveness. o For anything you have done to hurt me, I forgive you. o I will miss you but I will be ok without you. o I love you. I know you love me. o I will always think of you when

5 AOTA 2014: OT IN HOSPICE 5 Resources American Occupational Therapy Association (2011). The role of occupational therapy in end-oflife care. Retrieved from: Care.aspx?FT=.pdf Canadian Association of Occupational Therapists. (2008). CAOT position statement: Occupational therapy and end-of-life care. Retrieved September 29, 2011, from Bye, R. A. (1998). When clients are dying: Occupational therapists perspectives. Occupational Therapy Journal of Research, 18, Hooley, L. (1997). Circumventing burnout in AIDS care. American Journal of Occupational Therapy, 51, La Cour, K., Josephsson, S., Tishelman, C., & Nygard, L. (2007). Experiences of engagement in creative activity at a palliative care facility. Palliative and supportive care, 5, Jacques, N. D, & Hasselkus, B. R. (2004). The nature of occupation surrounding dying and death. OTJR: Occupation, Participation, and Health, 24, Lloyd, C. (1989). Maximising occupational role performance with the terminally ill patient. British Journal of Occupational Therapy, 52, 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, Park Lala, A., & Kinsella, E. A. (2011). A phenomenological inquiry into the embodied nature of occupation at the end of life. Canadian Journal of Occupational Therapy, 78, Pizzi, M., & Briggs, R. (2004). Occupational and physical therapy in hospice: The facilitation of meaning, quality of life, and well-being. Topics in Geriatric Rehabilitation, 20, Prochnau, C., Liu, L., & Boman, J. (2003). Personal-professional connections in palliative care occupational therapy. American Journal of Occupational Therapy, 57, Rahman, H. (2000). Journey of providing care in hospice: Perspectives of occupational therapists. Qualitative Health Research, 10, Warne, K. E., & Hoppes, S. (2009). Lessons in living and dying from my first patient: An autoethnography. Canadian Journal of Occupational Therapy, 76,