Abstract
Rehabilitation professionals play an essential role in the care of people with life-threatening or terminal illness and their family caregivers. An interdisciplinary approach to care supports a paradigm shift from “traditional” rehabilitation approaches toward participation and quality of life. This chapter includes practical information about dying trajectories associated with common illnesses. Terminology is clarified (e.g., hospice, palliative care, end-of-life care) to help professionals and clients understand where, when, and how rehabilitation professionals can best work with clients approaching the end of life. Ethical considerations are offered with examples of potential challenges professionals may face in this practice area. The chapter then takes a closer look at the following professions’ roles in managing end-of-life issues: occupational therapy, physical therapy, speech therapy, and rehabilitation counseling. Aligning the interdisciplinary team’s work with family caregivers’ needs is essential in this practice area, so the chapter details issues around caregiver burden, bereavement, and ways of helping family caregivers. Lastly there is an examination of outcomes attributed to rehabilitation services at the end of life and opportunities for professionals to further the positive impact on this population who are simultaneously living and dying.
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References
Akard, T. F., Dietrich, M. S., Friedman, D. L., Hinds, P. S., Given, B., Wray, S., & Gilmer, M. J. (2015). Digital storytelling: An innovative legacy-making intervention for children with cancer. Pediatric Blood and Cancer, 62(4), 658–665. https://doi.org/10.1002/pbc.25337
American Occupational Therapy Association. (2016). The role of occupational therapy in end-of-life care. American Journal of Occupational Therapy, 70(Suppl. 2), 7012410075. https://doi.org/10.5014/ajot.2016.706S17
American Physical Therapy Association. (2012). The role of physical therapy in hospice and palliative care HOD P06-11-14-11 [Position]. Retrieved from http://www.apta.org/uploadedfiles/aptaorg/about_us/policies/hod/health/roleofptinhospiceandpalliativecare_hod_p06-11-14-11.pdf
American Speech-Language-Hearing Association (ASHA). (n.d.). End-of-life issues in speech-language pathology. Retrieved from www.asha.org/slp/clinical/endoflife/
Aoun, S., Deas, K., Toye, C., Ewing, G., Grande, G., & Stajduhar, K. (2015). Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial. Palliative Medicine, 29(6), 508–517. https://doi.org/10.1177/0269216314566061
Azlan, H. A., Overton, P. G., Simpson, J., & Powell, P. A. (2017). Differential disgust responding in people with cancer and implications for psychological well-being. Psychology & Health, 32(1), 19–37. https://doi.org/10.1080/08870446.2016.1235165
Barawid, E., Covarrubias, N., Tribuzio, B., & Liao, S. (2015). The benefits of rehabilitation for palliative care patients. American Journal of Hospice & Palliative Medicine, 32(1), 34–43. https://doi.org/10.1177/1049909113514474
Baxter, S., Beckwith, S., Clark, D., Cleary, J., Falzon, D., Glaziou, P., & Wenk, R. (2014). Global atlas on palliative care at the end of life. Retrieved from http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf
Beauchamp, T. L., & Childress, J. F. (2014). Principles of biomedical ethics (7th ed.). Oxford, UK: Oxford University Press.
Benthall, D., & Holmes, T. (2011). End of life care – Facilitating meaningful occupations. OT Practice, 16(9), 7–10.
Bostwick, D., Wolf, S., Samsa, G., Bull, J., Taylor, D. H., & Johnson, K. S. (2017). Comparing the palliative care needs of those with cancer to those with common non-cancer serious illness. Journal of Pain and Symptom Management, 53(6), 1079–1084.31. https://doi.org/10.1016/j.jpainsymman.2017.02.014
Boucher, N. A. (2016). Direct engagement with communities and interprofessional learning to factor culture into end-of-life health care delivery. American Journal of Public Health, 106(6), 996–1001. https://doi.org/10.2105/AJPH.2016.303073
Buscemi, V., Font, A., & Viladricht, C. (2010). Focus on the relationship between caregivers unmet needs and other caregiving outcomes in cancer palliative care. Psicooncologia, 7(1), 109–125.
Case, J. C., Blackwell, T. L., & Sprong, M. E. (2016). Rehabilitation counselor ethical considerations for end-of-life care. Journal of Rehabilitation, 82(1), 47–57.
Centers for Medicare and Medicaid Services. (2013). Jimmo v. Sebelius settlement agreement program manual clarifications fact sheet. Available online at http://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/SNFPPS/Downloads/Jimmo-
Centers for Medicare and Medicaid Services. (2015). 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
Centers for Medicare and Medicaid Services. (2016). Covered medical and other health services. In Medicare benefit policy manual. (rev. 228). Available online at https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Downloads/bp102c15.pdf
Commission on Rehabilitation Counselor Certification. (2017a). Code of ethics, section A.9 adopted 2016, effective Jan1 2017. Retrieved May 4, 2017, from https://www.crccertification.com/
Commission on Rehabilitation Counselor Certification. (2017b). CRC certification guide. Retrieved May 4, 2017, from https://www.crccertification.com/filebin/pdf/CRCCertificationGuide102017.pdf
Cooper, J., & Kite, N. (2015). Occupational therapy in palliative care. In E. Cherny, M. Fallon, S. Kaasa, R. K. Portenoy, & D. C. Currow (Eds.), Oxford textbook of palliative medicine (pp. 177–183). Oxford, UK: Oxford University Press.
Corr, C. A. (2015). Let’s stop “staging” persons who are coping with loss. Illness, Crisis & Loss, 23(3), 226–241. https://doi.org/10.1177/1054137315585423
Corr, C. A., & Corr, D. M. (2013). Death & dying, life & living (7th ed.). Belmont, CA: Wadsworth.
Cruz-Oliver, D. M., & Sanchez-Reilly, S. (2016). Barriers to quality end-of-life care for Latinos. Journal of Hospice and Palliative Nursing, 18(6), 505–511. doi: 10.1097.NJH.000000000000277.
Drouin, J., Martin, K., Onowu, N., Berg, A., & Zuellig, L. (2009). Physical therapy utilization in hospice and palliative care settings in Michigan: A descriptive study*. Rehabilitation Oncology, 27(2), 3–8.
Family Caregiver Alliance. (2006). Caregiver assessment: Principles, guidelines and strategies for change. Report from a National Consensus Development Conference (Vol. I). San Francisco: Family Caregiver Alliance. https://www.caregiver.org/sites/caregiver.org/files/pdfs/v1_consensus.pdf
Feldman, D., & Kravetz, L. D. (2014). Super survival of the fittest. Psychology Today, 47(4), 78–86.
Forbat, L., McManus, E., & Haraldsdottir, E. (2012). Clinical implications for supporting caregivers at the end-of-life: Findings and from a qualitative study. Contemporary Family Therapy, 34, 282–292. https://doi.org/10.1007/s10591-012-9194-6
Hammill, K., Bye, R., & Cook, C. (2014). Occupational therapy for people living with a life-limiting illness: A thematic review. The British Journal of Occupational Therapy, 77(11), 582–589. https://doi.org/10.4276/030802214X14151078348594
Harlos, M. (2010). The terminal phase. In G. Hanks, N. Cherny, N. Chistakis, M. Fallon, S. Kaasa, & R. Portenoy (Eds.), Oxford textbook of palliative medicine (pp. 1549–1559). New York, NY: Oxford University Press.
Hoffman, A. O. (2017). Living life to its fullest: Managing chronic pain with occupational therapy. Retreived August 4, 2017, from https://www.aota.org/About-Occupational-Therapy/Professionals/HW/Articles/Chronic-Pain.aspx
Holland, J. M., & Neimeyer, R. A. (2010). An examination of stage theory of grief among individuals bereaved by natural and violent causes: A meaning-oriented contribution. Omega, 61(2), 103–120. https://doi.org/10.2190/OM.61.2.b
Hospice Foundation of America. (2011). A caregiver’s guide to the dying process. Retrieved March 6, 2017, from http://hospicefoundation.org/hfa/media/Files/Hospice_TheDyingProcess_Docutech-READERSPREADS.pdf
Houben, C. H., Spruit, M. A., Schols, J. M., Wouters, E. F., & Janssen, D. J. (2015). Patient-clinician communication about end-of-life care in patients with advanced chronic organ failure during one year. Journal of Pain and Symptom Management, 49(6), 1109–1115. https://doi.org/10.1016/j.painsymman.2014.12.008
Hui, D., Nooruddin, Z., Didwaniya, N., Dev, R., De La Cruz, M., Kim, S. H., … Bruera, E. (2014). Concepts and definitions of “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: A systematic review. Journal of Pain and Symptom Management, 47(1), 77–89. Retrieved from http://dx.doi.org/10/1016/j.jpainsymman.2013.02.021
Javier, N. S. C., & Montagnini, M. L. (2011). Rehabilitation of the hospice and palliative care patient. Journal of Palliative Medicine, 14(5), 638. https://doi.org/10.1089/jpm.2010.0125
Jeyaraman, S., Kathiresan, G., & Gopalsamy, K. (2010). Hospice: Rehabilitation in reverse. Indian Journal of Palliative Care, 16(3), 111–116. https://doi.org/10.4103/0973-1075.73640
Kaasa, T., & Wessel, J. (2001). The Edmonton functional assessment tool: Further development and validation for use in palliative care. Journal of Palliative Care, 17(1), 5–11.
Kanach, F. A., Brown, L. M., & Campbell, R. R. (2014). The role of rehabilitation in palliative care services. American Journal of Physical Medicine & Rehabilitation / Association of Academic Physiatrists, 93(4), 342. https://doi.org/10.1097/PHM.0000000000000005
Kendall, M., Carduff, E., Lloyd, A., Kimbell, B., Cavers, D., Buckingham, S., … Murray, S. A. (2015). Different experiences and goals in different advance diseases: Comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers. Journal of Pain and Symptom Management, 50(2), 216–224. doi: http://ezproxy.twu.edu:2079/10.1016/j.jpainsymman.2015.02.017
Khan, S. A., Gomes, B., & Higginson, I. J. (2014). End-of-life care: What do cancer patients want? National Review of Clinical Oncology, 11, 100–108. https://doi.org/10.1038/nrclinonc.2013.217
Kiresuk, T., & Sherman, R. (1968). Goal Attainment Scaling: A general method of evaluating comprehensive mental health programmes. Community Mental Health Journal, 4(6), 443–453. https://doi.org/10.1007/BF0153
Koenig, K. P. (2014). Contextual evaluation to support participation. In J. Hinojosa & P. Kramer (Eds.), Evaluation in occupational therapy (4th ed., pp. 103–120). Bethesda, MD: AOTA Press.
Kübler-Ross, E. (1970). On death and dying. London, UK: Tavistock Publications Ltd.
Lacey, J. (2015). Terminal phase. In E. Cherny, M. Fallon, S. Kaasa, R. K. Portenoy, & D. C. Currow (Eds.), Oxford textbook of palliative medicine (pp. 1125–1133). Oxford, UK: Oxford University Press.
LaPointe, J. (2012). Cancer-related pain: The role of occupational therapy in prevention and management. Occupational Therapy Now, 14(5), 10–12. Retrieved from http://ezp.twu.edu/docview/1117530909?accountid=7102
Lloyd, A., Kendall, M., Starr, J. M., & Murray, S. A. (2016). Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: A serial interview study. BMC Geriatrics, 16(176), 1–15. https://doi.org/10.1186/s12877-016-0350-y
LoPresti, M. A., Dement, F., & Gold, H. T. (2016). End-of-life care for people with cancer from ethnic minority groups: A systematic review. American Journal of Hospice & Palliative Medicine, 33(3), 291–305. https://doi.org/10.1177/1049909114565658
Lowey, S. E., Norton, S. A., Quinn, J. R., & Quill, T. E. (2013). Living with advanced heart failure or COPD: Experiences and goals of individuals nearing the end of life. Research in Nursing and Health, 36, 349–358. https://doi.org/10.1002/nur.21546
Lunney, J. R., Lynn, J., Foley, D. J., Lipson, S., & Guralnik, J. M. (2003). Patterns of functional decline at the end of life. Journal of the American Medical Association, 289(10), 2387–2392. https://doi.org/10.1001/jama.289.18.2387
McCaffrey, N., Bradley, S., Ratcliffe, J., & Currow, D. C. (2016). What aspects of quality of life are important from palliative care patients’ perspectives? A systematic review of qualitative research. Journal of Pain and Symptom Management, 52, 318–328.e5. https://doi.org/10.1016/j.jpainsymman.2016.02.012
Morin, L., Aubry, R., Frova, L., MacLeod, R., Wilson, D. M., Loucka, M., … Cohen, J. (2017). Estimating the need for palliative care at the population level: A cross-national study in 12 countries. Palliative Medicine, 31(6), 526–536. https://doi.org/10.1177/0269216316671280
Morrow, J. (2014). Last days of life: Care for the patient and family. In S. Z. Pantilat, W. Anderson, M. Gonzales, & E. Widera (Eds.), Hospital-based palliative medicine: A practical, evidence-based approach (pp. 223–236). Holboken, NJ: Wiley Blackwell.
Murray, S. A., Kendall, M., Grant, E., Boyd, K., Barclay, S., & Aziz, S. (2007). Pattern of social, psychological, and spiritual decline toward the end of life in lung cancer and heart failure. Journal of Pain and Symptom Management, 34(4), 393–402. https://doi.org/10.1016/j.jpainsymman.2006.12.009
National Association of Chronic Disease Directors. (2016). Why public health is necessary to improve healthcare. Retrieved from http://c.ymcdn.com/sites/www.chronicdisease.org/resource/resmgr/white_papers/cd_white_paper_hoffman.pdf
National Hospice and Palliative Care Organization. (2013). Standards of practice for hospice programs. Retrieved from http://www.nhpco.org/ethical-and-position-statements/preamble-and-philosophy
National Hospice and Palliative Care Organization. (2015). An explanation of palliative care. Retrieved from http://www.nhpco.org/palliative-care-4
National Hospice and Palliative Care Organization. (2016). Grief and bereavement. Retrieved from https://www.nhpco.org/resources/grief-and-bereavement
Oldervoll, L. M., Loge, J. H., Paltiel, H., Asp, M. B., Vidvei, U., Wiken, A. N., … Kaasa, S. (2006). The Effect of a physical exercise program in palliative care: A phase II study. Journal of Pain and Symptom Management, 31, 421–430.
Ornstein, K. A., Kelley, A. S., Bollens-Lund, E., & Wolff, J. L. (2017). A national profile of end-of-life caregiving in the United States. Health Affairs, 36(7), 1184–1192. https://doi.org/10.1377/hlfhaff.2017.0134
Papalia, D. E., Feldman, R., & Martorell, G. (2015). Experience human development (13th ed.). Columbus, OH: McGraw Hill.
Pickens, N., & Long, T. (2016). Occupational therapy practitioners working with caregivers in adult palliative care and end-of life care. OT Practice, 21(3), CE1–CE7.
Pickens, N. D., O’Reilly, K. R., & Sharp, K. C. (2010). Holding on to normalcy and overshadowed needs: Family caregiving at end of life. Canadian Journal of Occupational Therapy, 77(4), 234–240. https://doi.org/10.2182/cjot.2010.77.4.5
Pollens, R. D. (2012). Integrating speech-language pathology services in palliative end-of-life care. Topics in Language Disorders, 32(2), 137–148. https://doi.org/10.1097/TLD.0b013e3182543533
Pozgar, G. D. (2016). Legal and ethical issues for health professionals (4th ed.). Burlington, MA: Jones & Bartlett Learning.
Putt, K., Faville, K. A., Lewis, D., Mcallister, K., Pietro, M., & Radwan, A. (2015). Role of physical therapy intervention in patients with life-threatening illnesses: A systematic review. American Journal of Hospice & Palliative Medicine. https://doi.org/10.1177/1049909115623246
Reed, E., & Corner, J. (2015). Defining the illness trajectory of metastatic breast cancer. BMJ Supportive & Palliative Care, 5, 358–365. https://doi.org/10.1136/bmjspcare-2012-000415
Reynolds, L. M., Bissett, I. P., Porter, D., & Consedine, N. S. (2016). The “ick” factor matters: Disgust prospectively predicts avoidance in chemotherapy patients. Annual of Behavioral Medicine, 50, 935–945. https://doi.org/10.1007/s12160-016-9820-x
Russell, M., & Bahle-Lampe, A. (2016). The care for the dying: A critical historical analysis of occupational therapy in hospice. Open Journal of Occupational Therapy, 4(2). https://doi.org/10.15453/2168-6408.1216
Stajduhar, K. I. (2013). Burdens of family caregiving at the end of life. Clinical and Investigative Medicine, 36(3), E121. https://doi.org/10.25011/cim.v36i3.19722
Stead, A., & McDonnell, C. (2015). Discussing end-of-life care: An opportunity. Perspectives On Gerontology, 20(1), 12–15. https://doi.org/10.1044/gero20.1.12
Stroebe, M., Schut, H., & Boerner, K. (2017). Cautioning health-care professionals: Bereaved persons are misguided through the stages of grief. Omega, 74(4), 455–473. https://doi.org/10.1177/0030222817691870
Turner-Stokes, L. (2009). Goal Attainment Scaling (GAS) in rehabilitation: A practical guide. Clinical Rehabilitation, 23(4), 362–370. https://doi.org/10.1177/0269215508101742
Victoria Hospice Society. (2006). Palliative performance scale (PPSv2). In M. G. Downing & W. Wainwright (Eds.), Medical care of the dying (pp. 120–121). Victoria, BC: Victoria Hospice Society.
Williams, S. W., & Harvey, I. S. (2013). Culture, race, and SES: Application to end of life decision making for African-American caregivers. SIG 15 Perspectives on Gerontology, 18(2), 69–76.
Wilson, C. M. (2016). Advance directives, advance care planning, and the physical therapist’s role in these challenging conversations. Rehabilitation Oncology, 34(2), 72–74. https://doi.org/10.1097/01.REO.0000000000000012
Wilson, C. M., Stiller, C. H., Doherty, D. J., & Thompson, K. A. (2017). The role of physical therapists within hospice and palliative care in the United States and Canada. American Journal of Hospice & Palliative Medicine, 34(1), 34–41. https://doi.org/10.1177/1049909115604668
World Health Organization. (2016). Cancer. WHO Definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/
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Chow, J.K., McKay, M.H., Pickens, N.D. (2018). Management of End-of-Life Issues. In: Gatchel, R., Schultz, I., Ray, C. (eds) Handbook of Rehabilitation in Older Adults. Handbooks in Health, Work, and Disability. Springer, Cham. https://doi.org/10.1007/978-3-030-03916-5_24
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