Leadership
Needs Assessment
Writing A Business Plan
Reimbursement
Delivery Models
Inter-Disciplinary Team
Physician
Nursing
Social Work
Pastoral Care/Chaplaincy
Program Operations
Quality Assessment






Social Work

The constant, unrelenting feelings of sorrow, loss and abandonment are overwhelming. Helping a dying patent and their family accept this pain, within their biopsychosocial system, is a major intervention of the palliative care social worker. Functions of the social worker include case management, supportive counseling, advocacy, ethics, discharge planning, education and program development (bereavement, complimentary therapy, outreach and staff support programs.)

Communication

Before a thorough patient and family unit assessment can be completed, the social worker must assess language barriers that can interfere in assessment, integration of information and decision-making. The use of family members as translators to overcome this barrier is problematic, as the clinician cannot know what is being said or understood. Family members translate through the filter of their emotional and cognitive responses and most cannot have the objectivity or understanding of medical issues when combining information and the cognitive and emotional reactions upon which decisions are based. Truth telling is impacted by cultural preference. Some cultures believe that language shapes reality so that discussing events such as death may precipitate them and therefore is avoided. A nonverbal style does not necessarily imply lack of understanding, denial or depression but may reflect a respect and need for silence and introspection. Non-verbal communication such as touching, smiling and eye contact may be appropriate in one culture and not in another.

Understanding the Patient: The Biopsychosocial Assessment

How the patient copes with a terminal or chronic illness will be influenced by age, culture, level of education, gender, occupation, race, roles and beliefs. Completing a thorough and initial biopsychosocial assessment will not only assist the social worker but also the palliative care team in making treatment options and a care plan that truly reflects a dying patient's unique and individual experience.

Once a baseline understanding of the patient's and family's communication history is established, a palliative care social worker can begin to negotiate and balance the demands of a patient's biopsychosocial stressors during the advanced medical illness (i.e. mental health needs, legal advocacy, family unit support, concrete service delivery-meals at home, home health, home modifications, etc.). It is through this balance that a clinical social worker integrates a systems approach to the suffering individual and family unit.

It is very common for one's dying experience to remind a patient of unresolved feelings from a past experience(s) that has involved loss: i.e. loss of a limb, a divorce, a parental death, an abortion, etc. It is through a patient's history of loss, that a social worker can best obtain a baseline coping measure. Questions such as: how did this person deal with loss in the past? What was done to cope? Were psychiatric medications and/or supportive therapy used? Is there a pattern to how this patient is dealing with their dying experience in relation to past losses involving death? Losses not involving death?

Acquiring an accurate history of a patient and family mental illness in regards to onset, history of treatment and response to treatment can make unpredictable reactions to death manageable. This in turn allows for a supportive care plan that will aide a grieving family even after discharge; addressing issues such as crisis mental health community services, regularly scheduled appointments with a clinical social worker, psychiatrist, support group and/or outpatient clinic.

The Culture of Death

Culturally determined rituals at death can include such things as special care of the body at death, pre-death behaviors and post death and bereavement rituals, which guide and support families during a period loss and transition. A social worker will assist a patient and family with acceptance and closure communication with loved ones given the patient's cultural and belief system. Advocating and assisting with post-death rituals is a function of a social worker, especially if those beliefs of the patient are different of those beliefs of the family unit.

Program Development

Social workers also assist the palliative care team with developing new programs that add to a patient's, family's and staff's quality of life.  Examples of programs that are developed can be spousal/partner support group, aromatherapy, staff guided imagery, meditations, family educational programs, and children programs. Outreach programs to educate the community and other healthcare professionals are also a good way to increase community awareness and support of a palliative care program.

Related References

1.  Coyle N,  Ingham J, Altilio T. Care of the terminal patient's physical and and psychosocial needs. In Miaskowski, C and Buschnel, P. (Eds) Oncology Nursing: Assessment and Clinical Care.  Mosby, St. Louis, 359-382.

2. Levine, C (2000)  The loneliness of the long term caregiver. In Levine, C (Ed)  Always on Call When Illness Turns Families into Caregivers. United Hospital Fund of New York, New York, pp 76-78.

3. Monroe, B. (1998) Social work in palliative care. In  Doyle, D et al. (Eds) Oxford Textbook of Palliative Medicine, Oxford Medical Publications, NewYork,  pp 867-880.

4. Zabora J, Loscalzo M (1998) Psychosocial consequences of advanced cancer. In Berger A et al. (Eds)  Principles and Practice of Supportive Oncology, Lippincot-Raven Publishers, Philadelphia, pp 531-545.

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6. Massie, MJ & Payne, DK (2000) Depression and Anxiety. In Berger A et al. (Eds)  Principles and Practice of Supportive Oncology, Lippincot-Raven Publishers, Philadelphia. pp 1-2.

7. Vachon, M. (1998) The Emotional Problems of the Patient. In  Doyle, D et al. (Eds) Oxford Textbook of Palliative Medicine, Oxford Medical Publications, NewYork,  pp 867-880.

8. Wool, MS. Understanding denial in cancer patients.  Advances in Psychosomatic Medicine, 1988; 18: pp 37-53.

9. Zabora J & Loscalzo, M (1998) Psychosocial consequences of advanced cancer. In Berger A et al. (Eds)  Principles and Practice of Supportive Oncology, Lippincot-Raven Publishers, Philadelphia, pp 531-545.

10. Massie, MJ & Payne, DK (2000) Depression and Anxiety. In Berger A et al. (Eds)  Principles and Practice of Supportive Oncology, Lippincot-Raven Publishers, Philadelphia. pp 2-4.

11. Monroe, B. (1998) Social work in palliative care. In  Doyle, D et al. (Eds) Oxford Textbook of Palliative Medicine, Oxford Medical Publications, NewYork,  p 868.

12. Monroe, B. (1998) Social work in palliative care. In  Doyle, D et al. (Eds) Oxford Textbook of Palliative Medicine, Oxford Medical Publications, NewYork,  p 867-880.

13. Zabora J & Loscalzo, M (1998) Psychosocial consequences of advanced cancer. In Berger A et al. (Eds)  Principles and Practice of Supportive Oncology, Lippincot-Raven Publishers, Philadelphia, pp 531-545.

14. Hileman JW & Lackey NR. Self-identified needs of patients with cancer at home and their home caregivers: a descriptive study.  Oncology Nursing Forum 1990; 7: 907-913.

15. Kristjanson, LJ. (1997) The family as the unit of treatment. In Portenoy,R & Bruera, E (Eds) Topics in Palliative Care Volume 1, Oxford University Press, New York, pp 245-261.

16. Altilio, T. (2000) Payers' and  providers' responsibility toward caregivers. In Levine, C (Ed)  Always on Call When Illness Turns Families into Caregivers. United Hospital Fund of New York, New York, pp 142-143.

17. Loscalzo, M & Jacobsen P. Practical behavioral approaches to the effective management of pain and distress. Journal of Psychosocial Oncology 1990; 8 (2/3): 139 -169.

18. Abrahm, JL. (2000) A Physician's Guide to Pain and Symptom Management in Cancer Patients. Johns Hopkins University Press, Baltimore, pp  247-269.

19. Altilio, T. (2000) Payers' and  providers' responsibility toward caregivers. In Levine, C (Ed)  Always on Call When Illness Turns Families into Caregivers. United Hospital Fund of New York, New York, pp 142-143.

20 Levine, C (2000)  The loneliness of the long term caregiver. In Levine, C (Ed)  Always on Call When Illness Turns Families into Caregivers. United Hospital Fund of New York, New York, pp 5.

22. Williamson GM et al. Activity restriction and prior relationship history as contributor to mental health outcomes among middle aged and older spousal caregivers. Health Psychology 1998; 17(2): 152-162.

22. Haley WE.  The family caregiver's role in  Alzheimer's disease.  Neurology  1997;48 (Supplement 6): S25-S29.

23. Wright LK et al. Health consequences of caregiver stress.  Medicine, Exercise, Nutrition & Health  1993; 2:181-195.

24. Altilio, T. (2000) Payers' and  providers' responsibility toward caregivers. In Levine, C (Ed)  Always on Call When Illness Turns Families into Caregivers. United Hospital Fund of New York, New York, pp 132.

25. Abrahm, JL. (2000) A Physician's Guide to Pain and Symptom Management in Cancer Patients. Johns Hopkins University Press, Baltimore, pp  254-259.

26. Kristjanson, LJ. (1997) The family as the unit of treatment. In Portenoy,R & Bruera, E (Eds) Topics in Palliative Care Volume 1, Oxford University Press, New York, pp 245-261.

27. Ferrel, BR. (1998) The family. . In  Doyle, D et al. (Eds) Oxford Textbook of Palliative Medicine, Oxford Medical Publications, NewYork,  p 910-913.

28. Abrahm, JL. (2000) A Physician's Guide to Pain and Symptom Management in Cancer Patients. Johns Hopkins University Press, Baltimore, pp  254-259

29. Loscalzo, M & Jacobsen P. Practical behavioral approaches to the effective management of pain and distress. Journal of Psychosocial Oncology 1990; 8 (2/3): 139 -169.

30. Ambuel, B (2000) Conducting a family conference. Principles and Practices of Supportive Oncology Updates. 3(3): pp1-12.

31. Miller, RD & Walsh, D.  Psychosocial aspects of palliative care in advanced cancer. Journal of Pain and Symptom Management 1991; 6(1): 24-29.

32. Leininger, M.  Towards conceptualization of transcultural health care systems: concepts and a model.  Journal of Transcultural Nursing 1993; (4): 32-40.

33. Koenig, B & Gates-Williams J.  Understanding cultural differences in caring for dying patients. In Caring for Patients at the End of Life (Special Issue). Western Journal of Medicine 1995; 163: 244-249.

34. Kagawa-Singer, M. (1996) Cultural systems. In R. McCorkle et al (Eds). Cancer Nursing (2nd ed) Saunders, Philadelphia pp 38-52.

35. Blackhall, IJ et al.  Ethnicity and attitudes toward patient autonomy.  Journal of the American Medical Association 1995 ; 274(10): 820-825.

36. Die-Trill, M. (1998) The patient from a different culture.  In J. Holland etc al (Eds) Psycho-oncology, Oxford University Press, New York

37. Kagawa-Singer, M (1998) A multicultural perspective on death and dying. Oncology Nurse Forum 25(10): pp1751-1763.

38.  Die-Trill, M. (1998) The patient from a different culture.  In J. Holland etc al (Eds) Psycho-oncology, Oxford University Press, New York

39. Nursing 2000 Drug Handbook (2000) Cultural aspects of drug therapy

40. Hallenbeck, J & Goldstein, MK (1999) Decisions at the end of life: cultural considerations beyond medical ethics.  Generations Spring 24-29.

41. Die-Trill, M. (1998) The patient from a different culture.  In J. Holland etc al (Eds) Psycho-oncology, Oxford University Press, New York

42.  Kagawa-Singer, M. (1996) Cultural systems. In R. McCorkle et al (Eds). Cancer Nursing (2nd ed) Saunders, Philadelphia pp 38-52.

43. Nursing 2000 Drug Handbook (2000) Cultural aspects of drug therapy

44. Kagawa-Singer, M (1998) A multicultural perspective on death and dying. Oncology Nurse Forum  1998; 25(10): pp1751-1763.

45. Kreier, R.  Crossing the cultural divide. American Medical News 1999; pp1-4.

46. Block SD for the ACP-ASIM End-of-Life Care Consensus Panel. Assessing and Managing Depression in the Terminally Ill Patient. Annals of Internal Medicine, 2000; 132: pp 209-218.
http://www.annals.org

47. Emanuel EJ, Fairclough DL, Slutsman J & Emanuel LL. Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers. Annals of Internal Medicine, 2000; 132: pp 451-459.
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48. Fried TR, van Doorn C, O'Leary JR, Mary E. Tinetti ME, & Drickamer MA. Older Persons' Preferences for Site of Terminal Care. Annals of Internal Medicine, 1999; 131: pp109-112.
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49. Lo B, Quill T & Tulsky J for the ACP-ASIM End-of-Life Care Consensus. Discussing Palliative Care with Patients. Annals of Internal Medicine, 1999; 130: pp 744-749.
http://www.annals.org

50. Crawley L, Payne R, Bolden J, Payne T, Washington P, Williams S for the Initiative to Improve Palliative and End-of-Life Care in the African American Community. Palliative and End-of-Life Care in the African American Community. Journal of the American Medical Association, 2000; 28: pp 2518.
http://jama.ama-assn.org

51. Zerzan J, Stearns S & Hanson L. Access to Palliative Care and Hospice in Nursing Homes. Journal of the American Medical Association , 2000; 284: pp 2489.
http://jama.ama-assn.org

PubMed, a service of the National Library of Medicine, provides access to over 11 million citations from MEDLINE and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.  Visit:  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

This reference list was supplied by Myra Glajchen, DSW and Terry Altilio, ACSW, Palliative Care, Slide Kit, Department of Pain Medicine and Palliative Care, Beth Israel, Medical Center, New York, N.Y., 2001. 


Additional Resources

Detoxifying Death: The Supportive-Affective Group Experience (SAGE) Program
A CAPC Fall Forum 2001 Workshop
October 2001, Chicago, IL
PowerPoint Presentation

Supportive-Affective Groups for Patients with Life-Threatening Medical Conditions:
A Spiritual-Emotional-Relational Approach to Helping Patients
Saint Louis University School of Medicine
Departments of Internal Medicine, Community & Family Medicine, Pastoral Care and Psychiatry

Last Acts Diversity and End-of-Life Care Literature Review
Annotated Bibliography

World Wide Web Resource for Social Workers
WWWRSW is jointly sponsored by New York University's Ehrenkranz School of Social Work and the Division of Social Work and Behavioral Science, Mount Sinai School of Medicine.

An Overview of a Bereavement Program
An outline guide for palliative care social workers

Palliative Care: Psychosocial Perspectives
Department of Pain Medicine and Palliative Care
Beth Israel Medical Center
A PowerPoint Presentation

Coping: When Critical, Unpredictable Changes Come Into Your Life
Washington Post Article

Funding Initiatives from the Project on Death in America

Project On Death In America
The mission of the Project on Death in America is to understand and transform the culture and experience of dying and bereavement.

A Day to Remember: Memorial Readings
The UCSF Comfort Care Team Ceremony Selections


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