Phenomenology of Pain and Suffering at the End of Life: A Humanistic Perspective in Gerontological Health and Social Work

REFERENCES

• Altilio , T. , Otis-Green , S. , Hedlund , S. , & Cohen Fineberg , I. ( 2006 ). Pain management and palliative care . In S. Gehlert , & T. A. Browne (Eds.), Handbook of health social work (pp. 635 – 672 ). Hoboken , NJ : John Wiley & Sons .
   Google Scholar
• Barbato , M. (2006). Pain of dying. Journal of Religion, Spirituality & Aging , 18(2–3), 111–122.
   Google Scholar
• Bern-Klug , M. ( 2004 ). Ambiguous dying . Health & Social Work , 29 ( 1 ), 55 – 64 .
   PubMed Web of Science ®Google Scholar
• Bern-Klug , M. , Gessert , C. , & Forbes , S. ( 2001 ). The need to revise assumptions about the end of life: Implications for social work practice . Health & Social Work , 26 ( 1 ), 38 – 47 .
   PubMed Web of Science ®Google Scholar
• Black , H. K. ( 2006 ). Soul pain: The meaning of suffering in later life . Amityville , NY : Baywood Publishing Company, Inc .
   Google Scholar
• Breitbart , W. , Gibson , C. , Poppito , S. , & Berg , A. ( 2004 ). Psychotherapeutic interventions at the end of life: A focus on meaning and spirituality . Canadian Journal of Psychiatry , 49 ( 5 ), 177 – 184 .
   Google Scholar
• Breitbart , W. , & Heller , K. ( 2003 ). Reframing hope: Meaning-centered care for patients near the end of life . Journal of Palliative Medicine , 6 ( 6 ), 979 – 988 .
   PubMedGoogle Scholar
• Brudney , D. ( 2009 ). Choosing for another: Beyond autonomy and best interests . Hastings Center Report , 39 ( 2 ), 31 – 37 .
   PubMed Web of Science ®Google Scholar
• Burt , R. ( 2005 ). The end of autonomy . In B. Jennings , G. Kaebnick , & T. H. Murray (Eds.), Improving end of life care: Why has it been so difficult? Hastings Center Report Special Supplement , 35(6), S9–S13.
   Google Scholar
• Byock , I. ( 1994 ). When suffering persists… Journal of Palliative Care , 10 ( 2 ), 8 – 13 .
   PubMedGoogle Scholar
• Byock , I. ( 1996 ). The nature of suffering and the nature of opportunity at the end-of-life . Clinics of Geriatric Medicine , 12 , 237 – 251 .
   PubMed Web of Science ®Google Scholar
• Byock , I. ( 1997 ). Dying well: Peace and possibilities at the end of life . New York : Riverhead Books .
   Google Scholar
• Byock , I. ( 2002 ). Meaning and value of death . Journal of Palliative Medicine , 5 ( 2 ), 279 – 288 .
   Google Scholar
• Cassell , E. J. ( 1982 ). The nature of suffering and the goals of medicine . New England Journal of Medicine , 306 , 639 – 645 .
   PubMed Web of Science ®Google Scholar
• Cassell , E. J. ( 1991 ). Nature of suffering and the goals of medicine . New York : Oxford University Press .
   Google Scholar
• Chapman , C. R. , & Gavrin , J. ( 1993 ). Suffering and its relationship to pain . Journal of Palliative Care , 9 ( 2 ), 5 – 13 .
   Google Scholar
• Charmaz , K. ( 1983 ). Loss of self: A fundamental form of suffering in chronically ill . Sociology of Health and Illness , 5 ( 2 ), 168 – 195 .
   PubMedGoogle Scholar
• Charmaz , K. ( 1997 ). Good days, bad days: The self in chronic illness and time . New Brunswick , NJ : Rutgers University Press .
   Google Scholar
• Charmaz , K. ( 1999 ). Stories of suffering: Subjective tales and research narratives . Qualitative Health Research , 9 ( 3 ), 362 – 382 .
   Web of Science ®Google Scholar
• Chochinov , H. M. ( 2002 ). Dignity-conserving care—A new model for palliative care: Helping the patient feel valued . JAMA , 287 ( 17 ), 2253 – 2260 .
   PubMed Web of Science ®Google Scholar
• Chochinov , H. M. , Hack , T. , Hassard , T. , Kristjanson , L. J. , McClement , S. , & Harlos , M. ( 2004 ). Dignity and psychotherapeutic considerations in end-of-life care . Journal of Palliative Care , 20 ( 3 ), 134 – 142 .
   PubMed Web of Science ®Google Scholar
• Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990).
   Google Scholar
• Csikai , E. L. , & Martin , S. S. ( 2010 ). Bereaved hospice caregivers' views of the transition to hospice . Social Work in Health Care , 49 , 387 – 400 .
   PubMed Web of Science ®Google Scholar
• Doka , K. J. (2006). Social, cultural, spiritual and psychological barriers to pain management. In K. J. Doka (Ed.), Pain management at the end of life: Bridging the gap between knowledge and practice (pp. 59–74). Washington , DC : Hospice Foundation of America.
   Google Scholar
• Drummond , J. J. ( 2005 ). Self, other and moral obligation . Philosophy Today , 49 , 39 – 47 .
   Google Scholar
• Drummond , J. J. ( 2006 ). Respect as a moral emotion: A phenomenological approach . Husserl Studies , 22 , 1 – 27 .
   Web of Science ®Google Scholar
• Drummond , J. J. ( 2008 ). Moral phenomenology and moral intentionality . Phenomenology and the Cognitive Sciences , 7 ( 1 ), 35 – 49 .
   Google Scholar
• Fentiman , L. ( 2003 ). Patient advocacy and termination from managed care organizations: Do state laws protecting health care professional advocacy make any difference? Nebraska Law Review , 82 ( 2 ), 508 – 574 .
   Google Scholar
• Fins , J. J. ( 2006 ). Palliative ethic of care: Clinical wisdom at life's end . Sudbury , MA : Jones and Bartlett .
   Google Scholar
• Frank , A. W. ( 1978 ). Anxiety aroused by the dying: A phenomenological inquiry . Journal of Phenomenological Psychology , 9 ( 1 ), 99 – 113 .
   Google Scholar
• Frank , A. W. ( 1991 ). At the will of the body: Reflections on illness . New York : Houghton Mifflin Company .
   Google Scholar
• Frank , A. W. ( 1995 ). The wounded storyteller . Chicago : University of Chicago Press .
   Google Scholar
• Frank , A. W. ( 2001 ). Can we research suffering? Qualitative Health Research , 11 ( 3 ), 353 – 362 .
   PubMed Web of Science ®Google Scholar
• Frankl , V. E. ( 1984 ). Man's search for meaning . Boston : Beacon Press .
   Google Scholar
• Freeman , M. ( 2008 ). Beyond narrative: Dementia's tragic promise . In L. C. Hyden , & J. Brockmeier (Eds.), Health, illness and culture (pp. 169 – 184 ). New York : Routledge .
   Google Scholar
• Freud , S. ( 1965 ). The interpretation of dreams (J. Strachey, Trans.) . New York : Basic Books . (Original work published 1900)
   Google Scholar
• Gibson , S. J. , & Helme , R. D. ( 2000 ). Cognitive factors and the experience of pain and suffering in older persons . Pain , 85 , 375 – 383 .
   PubMed Web of Science ®Google Scholar
• Giorgi , A. ( 1970 ). Psychology as a human science . New York : Harper & Row .
   Google Scholar
• Gold , D. T. , & Roberto , K. A. ( 2000 ). Correlates and consequences of chronic pain in older adults . Geriatric Nursing , 21 ( 5 ), 270 – 273 .
   PubMed Web of Science ®Google Scholar
• Greene , R. R. , & Cohen , H. L. ( 2005 ). Social work with older adults and their families: Changing practice paradigms . Families in Society , 86 ( 3 ), 367 – 373 .
   Web of Science ®Google Scholar
• Gregory , D. , & English , J. ( 1994 ). The myth of control: Suffering in palliative care . Journal of Palliative Care , 10 ( 2 ), 18 – 22 .
   PubMedGoogle Scholar
• Gutheil , I. A. , & Heyman , J. C. ( 2005 ). Communication between older people and their health care agents: Results of an intervention . Health & Social Work , 30 ( 2 ), 107 – 116 .
   PubMed Web of Science ®Google Scholar
• Gutheil , I. A. , & Heyman , J. C. ( 2006 ). They don't want to hear us: Hispanic elders and adult children speak about end-of-life planning . Journal of Social Work in End-of-Life & Palliative Care , 2 ( 1 ), 55 – 70 .
   PubMedGoogle Scholar
• Gwyther , L. P. , Altilio , T. , Blacker , S. , Christ , G. , Csikai , E. L. , Hooyman , N. , … Howe , J. ( 2005 ). Social work scope of practice and competencies essential to palliative care, end-of-life care, and grief work . Journal of Social Work in End-of-Life and Palliative Care , 1 ( 1 ), 87 – 120 .
   PubMedGoogle Scholar
• Hooyman , N. R. , & Kramer , B. J. ( 2006 ). Living through loss: Interventions across the life span . New York : Columbia University Press .
   Google Scholar
• Husserl , E. (1989). Ideas pertaining to a pure phenomenology and to a phenomenological philosophy. Second book: Studies in the phenomenology of constitution (A. Schuwer, Trans.). Dordrecht , The Netherlands : Springer. (Original work published 1913)
   Google Scholar
• Jennings , B. , Ryndes , T. , D'Onofrio , C. , & Baily , M. A. ( 2003 ). Access to hospice care: Expanding boundaries, overcoming barriers . Hasting Center Report Special Supplement , 33 ( 2 ), S3 – S7 .
   Web of Science ®Google Scholar
• Kapp , M. B. ( 2003 ). The law and older persons: Is geriatric jurisprudence therapeutic? Durham , NC : Carolina Academic Press .
   Google Scholar
• Karel , M. J. , Moye , J. , Bank , A. , & Azar , A. R. ( 2007 ). Three methods of assessing values for advance care planning comparing persons with and without dementia . Journal of Aging & Health , 19 ( 1 ), 123 – 151 .
   Google Scholar
• Kleinman , A. ( 1988 ). The illness narratives . New York : Basic Books .
   Google Scholar
• Kugelman , R. ( 1999 ). Complaining about chronic pain . Social Science and Medicine , 49 , 1663 – 1676 .
   PubMed Web of Science ®Google Scholar
• Kugelman , R. ( 2000 ). Pain in the vernacular: Psychological and physical . Journal of Health Psychology , 5 ( 3 ), 305 – 313 .
   Google Scholar
• Levinas , E. ( 1969 ). Totality and infinity: An essay on exteriority . Pittsburgh , PA : Duquesne University Press .
   Google Scholar
• Levinas , E. ( 1981 ). Otherwise than being or beyond essence . Pittsburgh , PA : Duquesne University Press .
   Google Scholar
• Levinas , E. ( 1987 ). Time and the other . Pittsburgh , PA : Duquesne University Press .
   Google Scholar
• Lockhart , L. K. , Bookwala , J. , Fagerlin , A. , Coppola , K. M. , Ditto , P. H. , et al. . ( 2001 ). Older adults' attitudes toward death: Links to perceptions of health and concerns about end-of-life issues . Omega , 43 ( 4 ), 331 – 347 .
   Google Scholar
• Lorenz , K. , Lynn , J. , Morton , S. C. , Dy , S. , Mularski , R. , et al. . ( 2004 ). End-of-life care and outcomes: Evidence report/technology assessment no. 110 (AHRQ Publication No. 05-E004-2). Prepared by the Southern California Evidence-Based Practice Center, under Contract No. 290-02-0003 . Rockville , MD : Agency for Healthcare Research and Quality .
   Google Scholar
• Lorenz , K. A. , Lynn , J. , Sydney , M. , Shugarman , L. R. , Wilkinson , A. , et al. . ( 2008 ). Evidence for improving palliative care at the end of life: A systematic review . Annals of Internal Medicine , 148 , 147 – 159 .
   PubMed Web of Science ®Google Scholar
• Mayday Fund Report ( 2009 ). A call to revolutionize chronic pain in America: An opportunity in health care reform . Washington , DC : Author .
   Google Scholar
• Meier , D. , Lim , B. , & Carlson , M. ( 2010 ). Raising the standard: Palliative care in nursing homes . Health Affairs , 29 ( 1 ), 36 – 40 .
   Google Scholar
• Mersky , H. , & Bogduk , N. (Eds.). ( 1994 ). Classification of chronic pain , (2nd ed.) . Seattle , WA : IASP Press .
   Google Scholar
• Mitchell , S. L. , Teno , J. M. , Kiely , D. K. , Shaffer , M. L , Jones , R. N. , et al. . ( 2009 ). The clinical course of advanced dementia . New England Journal of Medicine , 361 ( 16 ), 1529 – 1538 .
   PubMed Web of Science ®Google Scholar
• Morrissey , M. B. , & Jennings , B. ( 2006 ). A social ecology of health model in end-of-life decision-making: Is the law therapeutic? New York State Bar Association. Health Law Journal. Special Edition: Selected Topics in Long-Term Care Law , 11 ( 1 ), 51 – 60 .
   Google Scholar
• National Association of Social Workers . ( 2004 ). NASW standards for palliative and end of life care . Washington , DC : Author .
   Google Scholar
• National Association of Social Workers. (2008). NASW code of ethics . Washington , DC : Author.
   Google Scholar
• National Consensus Project for Quality Palliative Care . ( 2009 ). Clinical practice guidelines for quality palliative care () , 2nd ed. . Retrieved December 26, 2010, from http://www.nationalconsensusproject.org/guideline.pdf
   Google Scholar
• Nelson-Becker , H. B. ( 2006 ). Voices of resilience: Older adults in hospice care . Journal of Social Work in End of Life & Palliative Care , 2 ( 3 ), 87 – 106 .
   PubMedGoogle Scholar
• Pantilat , S. Z. ( 2009 ). Communicating with seriously ill patients: Better words to use . Journal of American Medical Association , 301 , 1279 – 1281 .
   Google Scholar
• Patient Self-Determination Act of 1990, Pub. L. No. 101–508.
   Google Scholar
• Peat , G. , Thomas , E. , Handy , J. , & Croft , P. ( 2004 ). Social networks and pain interference with daily activities in middle and old age . Pain , 112 , 397 – 405 .
   PubMed Web of Science ®Google Scholar
• Roberto , K. A. ( 2001 ). Chronic pain and intimacy in the relationships of older adults . Generations , 25 ( 2 ), 65 – 69 .
   Web of Science ®Google Scholar
• Roberto , K. A. , Perkins , S. N. , & Holland , A. K. ( 2007 ). Research on persistent pain in late life: Current topics and challenges . Journal of Women & Aging , 19 ( 3–4 ), 5 – 19 .
   PubMed Web of Science ®Google Scholar
• Roberto , K. A. , & Reynolds , S. G. ( 2002 ). Older women's experiences with chronic pain: Daily challenges and self-care practices . Journal of Women & Aging , 14 ( 3–4 ), 5 – 23 .
   PubMed Web of Science ®Google Scholar
• Stjernsward , J. , Foley , K. M. , & Ferris , F. D. ( 2007 ). The public health strategy for palliative care . Journal of Pain and Symptom Management , 33 ( 5 ), 486 – 493 .
   PubMed Web of Science ®Google Scholar
• Strang , P. , Strang , S. , Hultborn , R. , & Arner , S. ( 2004 ). Existential pain—An entity, a provocation, or a challenge? Journal of Pain and Symptom Management , 27 ( 3 ), 241 – 250 .
   PubMed Web of Science ®Google Scholar
• Sulmasy , D. P. ( 2003 ). Health care justice and hospice care . Hastings Center Report Special Supplement , 33 ( 2 ), S14 – S17 .
   Web of Science ®Google Scholar
• Tamura , M. K. , Covinsky , K. E. , Chertow , G. M. , Yaffe , K. , Landefeld , C. S. , & McCulloch , C. E. ( 2009 ). Functional status of elderly adults before and after initiation of dialysis . New England Journal of Medicine , 361 , 1539 – 1547 .
   Google Scholar
• Teno , J. M. , Kabumoto , G. , Wetle , T. , Roy , J. , & Mor , V. ( 2004 ). Daily pain that was excruciating at some time in the previous week: Prevalence, characteristics, and outcomes in nursing home residents . Journal of American Geriatrics Society , 53 , 762 – 767 .
   Google Scholar
• Wertz , F. J. ( 1993 ). Phenomenology of Sigmund Freud . Journal of Phenomenological Psychology , 24 ( 2 ), 101 – 129 .
   Google Scholar
• Wertz , F. J. ( 2005 ). Phenomenological research methods for counseling psychology . Journal of Counseling Psychology , 52 ( 2 ), 167 – 177 .
   Web of Science ®Google Scholar
• Wertz , F. J. ( 2006 , August ). The qualitative revolution: Sociopolitical and ethical horizons of legitimation. Paper presented at the 113th Annual APA Convention , New Orleans , LA .
   Google Scholar
• Wertz , F. J. ( 2010 ). The method of eidetic analysis for psychology . In T. F. Cloonan & C. Thiboutot (Eds.), The redirection of psychology: Essays in honor of Amedeo P. Giorgi (pp. 261 – 278 ). Montréal , Québec : Le Cercle Interdisciplinaire de Recherches phénoménologiques (CIRP), l'Université du Québec à Montréal et Rimouoski .
   Google Scholar
• Westphal , M. ( 2008 ). Levinas and Kierkegaard in dialogue . Indianapolis : Indiana University Press .
   Google Scholar
• Wronka , J. ( 2008 ). Human rights and social justice . Thousand Oaks , CA : Sage Publications .
   Google Scholar
• Zoloth-Dorfman , L. ( 1993 ). First, make meaning: An ethics of encounter for health care reform . Tikkun , 8 ( 4 ), 23 – 26 .
   Google Scholar