Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-21T11:27:57.935Z Has data issue: false hasContentIssue false
  • English
  • Français

Midwifing distress at end of life: Missed opportunities?

Published online by Cambridge University Press:  05 August 2013

Karen Fletcher
Karen Fletcher*
Affiliation:
University of Manitoba, Winnipeg, Manitoba, Canada
*
Address correspondence and reprint requests to: Karen Fletcher, University of Manitoba, 479 Helen Glass Centre for Nursing, Winnipeg, Manitoba R3T 2N2, Canada. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Extract

Birth and death are rites of passage, and preparation is important (Richards, 2007). Palliative care clinicians describe end of life as a meaningful stage of life filled with opportunity and mystery. However, in palliative care, we have a tendency to overlook dying as a means of spiritual awakening, and there is little understanding, and little or no demand, among palliative care patients, or in the broader culture, to learn the skills of dying.

Type
Essay/Personal Refelections
Information
Palliative & Supportive Care , Volume 12 , Issue 1 , February 2014 , pp. 81 - 89
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Balducci, L. (2011). Suffering and spirituality: Analysis of living experiences. Journal of Pain and Symptom Management, 42, 479–486.Google Scholar
Blinderman, C.D. & Cherney, N.I. (2005). Existential issues do not necessarily result in existential suffering: Lessons from cancer patients in Israel. Palliative Medicine, 19, 371–380.CrossRefGoogle Scholar
Blondeau, D., Roy, L., Dumont, S., et al. (2005). Physicians' and pharmacists' attitudes toward the use of sedation at the end of life: Influence of prognosis and type of suffering. Journal of Palliative Care, 21, 238–245.CrossRefGoogle ScholarPubMed
Boerstler, R.W. (1986). Meditation and the dying process. Journal of Humanistic Psychology, 26, 104–124.Google Scholar
Boston, P., Bruce, A. & Schreiber, R. (2011). Existential suffering in the palliative care setting: An integrated literature review. Journal of Pain and Symptom Management, 41, 604–618.Google Scholar
Boston, P.H. & Mount, B.M. (2006). The caregiver's perspective on existential and spiritual distress in palliative care. Journal of Pain and Symptom Management, 21, 13–26.Google Scholar
Boston, P., Towers, A. & Barnard, D. (2001). Embracing vulnerability: Risk and empathy in palliative care. Journal of Palliative Care, 17, 248–253.CrossRefGoogle ScholarPubMed
Bournes, D.A. & Naef, R. (2010). Human becoming practice around the globe: Exploring the art of living true presence. Nursing Science Quarterly, 19, 109–115.Google Scholar
Bradshaw, A. (1996). The spiritual dimension of hospice: The secularization of an ideal. Social Science & Medicine, 43, 409–419.Google Scholar
Breitbart, W. (2006). The goals of palliative care: Beyond symptom control. Palliative and Supportive Care, 4, 1–2.Google Scholar
Breitbart, W., Gibson, C., Poppito, S.R., et al. (2004). Psychotherapeutic interventions at the end of life: A focus on meaning and spirituality. Canadian Journal of Psychiatry, 49, 366–372.CrossRefGoogle ScholarPubMed
Bruce, A. & Boston, P. (2011). Relieving existential suffering through palliative sedation: Discussion of an uneasy practice. Journal of Advanced Nursing, 67, 2732–2740.Google Scholar
Bruce, A., Schreiber, R., Petrovskaya, O., et al. (2011). Longing for ground in a groundless world: A qualitative inquiry of existential suffering. BioMed Central Nursing, 10, 2.Google Scholar
Byock, I. (2002). The meaning and value of death. Journal of Palliative Medicine, 5, 279–288.Google Scholar
Cassell, E.J. (1999). Diagnosing suffering: A perspective. Annals of Internal Medicine, 131, 531–534.Google Scholar
Cassell, E.J. & Rich, B.A. (2010). Intractable end-of-life suffering and the ethics of palliative sedation. Pain Medicine, 11, 435–438.CrossRefGoogle ScholarPubMed
Chochinov, H.M., Kristjanson, L., Breitbart, W., et al. (2011). Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: A randomised controlled trial. The Lancet, 12, 753–762.Google Scholar
Chodron, P. (2001). The Places that Scare You: A Guide to Fearlessness in Difficult Times. Boston: Shambala.Google Scholar
Cohen, S.R., Mount, B.M.Tomas, J.J.N., et al. (1996). Existential well-being is an important determinant of quality of life. Cancer, 77, 576–586.3.0.CO;2-0>CrossRefGoogle ScholarPubMed
Connelly, J.E. (2009). The avoidance of human suffering. Perspectives in Biology and Medicine, 52, 381–391.Google Scholar
Davidhizar, R. & Lonser, G. (2003). Storytelling as a teaching technique. Nurse Educator, 28, 217–221.Google Scholar
Dyche, L. & Epstein, R.M. (2011). Curiosity and medical education. Medical Education, 45, 663–668.Google Scholar
Fahnestock, D.T. (1999). Partnership for good dying. Journal of the American Medical Association, 282, 615–616.Google Scholar
Fitzgerald, F.T. (1999). Curiosity. Annals of Internal Medicine, 130, 70–72.Google Scholar
Floriani, C. & Schramm, F.R. (2010). Journey of struggle: Kalothanasia and the hospice way of dying. Palliative and Supportive Care, 8, 461–468.CrossRefGoogle ScholarPubMed
Ford, D.W., Downey, L., Engelberg, R., et al. (2012). Discussing religion and spirituality is an advanced communication skill: An exploratory structural equation model of physician trainee self-ratings. Journal of Palliative Medicine, 15, 63–70.CrossRefGoogle ScholarPubMed
Galvin, K. & Todres, L. (2009). Embodying nursing openheartedness: An existential perspective. Journal of Holistic Nursing, 27, 141–149.Google Scholar
Gehart, D.R. & McCollum, E.E. (2007). Engaging suffering: Towards a mindful re-visioning of family therapy practice. Journal of Marital and Family Therapy, 33, 214–226.CrossRefGoogle ScholarPubMed
Green, J.W. (2008). Beyond the Good Death: The Anthropology of Modern Dying. Philadelphia: University of Pennsylvania Press.CrossRefGoogle Scholar
George, R. (2009). Suffering and healing – our core business. Palliative Medicine, 23,385–387.Google Scholar
Graham, I.W., Andrewes, T. & Clark, L. (2005). Mutual suffering: A nurse's story of caring for the living as they are dying. International Journal of Nursing Practice, 11, 277–285.Google Scholar
Halifax, J. (2011). The precious necessity of compassion. Journal of Pain and Symptom Management, 41, 146–153.Google Scholar
Halifax, J. (2009). Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death. Boston: Shambala.Google Scholar
Henoch, I. & Danielson, E. (2009). Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. Psycho-oncology, 18, 225–236.Google Scholar
Hui, D., de la Cruz, M., Thorney, S., et al. (2011). The frequency and correlates of spiritual distress among patients with advanced cancer admitted to an acute palliative care unit. American Journal of Hospice and Palliative Medicine, 28, 264–270.Google Scholar
Jenkinson, S. (2007). Suffering: The hundred little deaths before dying. In Palliative Care: Core Skills and Clinical Competencies, Emanuel, Linda L. & Librach, S. Lawrence (eds), pp. 15–26. Philadelphia: Saunders Elsevier.CrossRefGoogle Scholar
Krikorian, A., Limonero, J. & Mate, J. (2011). Suffering and distress at the end-of-life. Psycho-oncology (October), published online in Wiley Online Library. doi:10.1002/pon.2087Google Scholar
Kearney, M. & Mount, B. (2000). Spiritual Care of the Dying Patient. In Handbook of Psychiatry in Palliative Medicine. Chochinov, Harvey M. & Breitbart, William (eds), pp. 357–379. New York: Oxford University Press.Google Scholar
Lahood, G. (2007). Rumour of angels and heavenly midwives: Anthropology of transpersonal events and childbirth. Women and Birth, 20, 3–10.CrossRefGoogle ScholarPubMed
Lavoie, M., Blondeau, D. & De Koninck, T. (2008). The dying person: An existential being until the end of life. Nursing Philosophy, 9, 89–97.Google Scholar
Lehto, R.H. (2012). The challenge of existential issues in acute care: Nursing considerations for the patient with a new diagnosis of lung cancer. Clinical Journal of Oncology Nursing, 16, E4–E11.CrossRefGoogle ScholarPubMed
LeMay, K. & Wilson, K.G. (2008). Treatment of existential distress in life threatening illness: A review of manualized interventions. Clinical Psychology Review, 28, 472–493.Google Scholar
Levine, S. (1982). Who Dies? An Investigation of Conscious Living and Conscious Dying. Garden City: Anchorbooks.Google Scholar
Lovell, M.R. (2012). Preparation is the key to death being our friend. British Medical Journal, 344, e436.CrossRefGoogle ScholarPubMed
Lundstrom, S., Furst, C.J., Friedrichsen, M., et al. (2009). The existential impact of starting corticosteroid treatment as symptom control in advanced metastatic cancer. Palliative Medicine, 23, 165–170.Google Scholar
Lyon, D.E. & Younger, J. (2005). Development and preliminary evaluation of the Existential Meaning Scale Journal of Holistic Nursing, 23, 54–65.Google Scholar
Mako, C., Galek, K. & Poppito, S.R. (2006). Spiritual pain among patients with advanced cancer in palliative care. Journal of Palliative Medicine, 9, 1106–1113.Google Scholar
Makowski, S.K.E. & Epstein, R.M. (2012). Turning toward dissonance: Lessons from art, music, and literature. Journal of Pain and Symptom Management, 43, 293–298.CrossRefGoogle ScholarPubMed
Masson, J.D. (2002). Non-professional perceptions of ‘good death’: A study of the views of hospice care patients and relatives of deceased hospice care patients. Mortality, 7, 191–209.CrossRefGoogle Scholar
Melin-Johansson, C., Henoch, I., Strang, S., et al. (2012). Living in the presence of death: An integrative literature review of relatives' important existential concerns when caring for a severely ill family member. The Open Nursing Journal, 6, 1–12.Google Scholar
Melo, C.G. & Oliver, D. (2011). Can addressing death anxiety reduce health care workers' burnout and improve patient care? Journal of Palliative Care, 27, 287–295.Google Scholar
Miller, J. (1992). The way of suffering: A reasoning of the heart. Second Opinion, 17, 21–33.Google Scholar
Mitchell, G.J. & Bunkers, S. (2003). Engaging the abyss: A mis-take of opportunity? Nursing Science Quarterly, 16, 121–125.Google Scholar
Mount, B.M. (2003). The existential moment. Palliative and Supportive Care, 1, 93–96.Google Scholar
Mount, B.M., Boston, P.H. & Cohen, S.R. (2007). Healing connections: On moving from suffering to a sense of well-being. Journal of Pain and Symptom Management, 33, 372–388.Google Scholar
Mundle, R.G. (2011). The spiritual strength story in end-of-life care: Two case studies. Palliative and Supportive Care, 9, 419–424.Google Scholar
Ohlen, J., Bengtsson, J., Skott, C., et al. (2002). Being in a lived retreat-Embodied meaning of alleviated suffering. Cancer Nursing, 25, 318–325.Google Scholar
Olshansky, E. (2005). Nursing research in the context of awe and wonder. Journal of Professional Nursing, 21, 135–136.Google Scholar
Otis-Green, S., Ferrell, B., Borneman, T., et al. (2012). Integrating spiritual care within palliative care: An overview of nine demonstration projects. Journal of Palliative Medicine, 15, 154–162.Google Scholar
Papadimos, T.J. & Stawicki, S.P.A. (2011). The death of Ivan Ilych: A blueprint for intervention at the end of life. International Journal of Critical Illness and Injury Science, 1, 125–128.Google Scholar
Remen, R.N. (2008). Practicing a medicine of the whole person: An opportunity for healing. Hematology/Oncology Clinics of North America, 22, 767–773.Google Scholar
Remen, R.N., O'Donnell, J.F. & Rabow, M.W. (2008). The healer's art: Education in meaning and service. Journal of Cancer Education, 23, 65–67.Google Scholar
Richards, T. (2007). A better way to die. British Medical Journal, 334, 830.Google Scholar
Roy, D.J. (2011). Does “Spiritual” indicate a limit to palliative care? Journal of Palliative Care, 27, 259–260.Google Scholar
Sasser, C.G. & Puchalski, C.M. (2010). The humanistic clinician: Traversing the science and art of health care. Journal of Pain and Symptom Management, 39, 936–940.Google Scholar
Schmidt-Bunkers, S. (2006). What stories and fables can teach us. Nursing Science Quarterly, 19, 104–107.Google Scholar
Schwartz, K.D. & Lutfiyya, Z.M. (2012). “In pain waiting to die”: Everyday understandings of suffering. Palliative and Supportive Care, 10, 27–36.Google Scholar
Scott, J.G., Cohen, D., DiCicco-Bloom, B., et al. (2008). Understanding healing relationships in primary care. Annals of Family Medicine, 6, 315–322.Google Scholar
Sinclair, S. (2011). Impact of death and dying on the personal lives and practices of palliative and hospice care professionals. CMAJ, 183, 180–187.Google Scholar
Sinclair, S., Pereira, J. & Raffin, S. (2006). A thematic review of the spirituality literature within palliative care. Journal of Palliative Medicine, 9, 464–479.Google Scholar
Smith, M.J. & Liehr, P. (2005). Story theory: Advancing nursing practice scholarship. Holistic Nursing Practice, 19, 272–276.Google Scholar
Strang, P., Strang, S., Hultborn, R., et al. (2004). Existential pain–An entity, a provocation, or a challenge? Journal of Pain and Symptom Management, 27, 241–250.Google Scholar
Strasser, F., Walker, P. & Bruera, E. (2005). Palliative pain management: When both pain and suffering hurt. Journal of Palliative Care, 21, 69–79.Google Scholar
Terry, W. & Olson, L.G. (2004). Unobvious wounds: The suffering of hospice patients. International Medicine Journal, 34, 604–607.Google Scholar
Thompson, G.N. & Chochinov, H.M. (2010). Reducing the potential for suffering in older adults with advanced cancer. Palliative and Supportive Care, 8, 83–93.Google Scholar
Tolstoy, L. (1960). The Death of Ivan Ilych and Other Stories. Scarborough: New American Library.Google Scholar
Webb, M. (1997). The Good Death: The New American Search to Reshape the End of Life. Toronto: Bantam Books.Google Scholar
Yoder-Wise, P.S. & Kowalski, K. (2003). The power of storytelling. Nursing Outlook, 51, 37–42.Google Scholar
Younger, J. (1995). The alienation of the sufferer. Advances in Nursing Science, 17, 53–72.Google Scholar