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2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

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Conclusion<br />

In more individualistic cultures, such as Western ones,<br />

family roles also change when a member has cancer and the<br />

psychologic, social, and financial burdens <strong>of</strong> family caregiving<br />

increase. Consequently, the patient–doctor relationship<br />

is shifting from its traditional dual partnership to a<br />

more extended collaboration among pr<strong>of</strong>essionals, patients,<br />

and their families. This involves a parallel shift in the<br />

culture <strong>of</strong> medicine in which each patient’s family is included<br />

in the team as part <strong>of</strong> a functional system. 2,35 A<br />

reappraisal <strong>of</strong> the notion <strong>of</strong> individual autonomy is necessary<br />

and there is a growing trend toward speaking <strong>of</strong><br />

relational autonomy, based on a renewed sense <strong>of</strong> connectedness<br />

among family members. “Relational autonomy” refers<br />

to an understanding <strong>of</strong> autonomy in light <strong>of</strong> family and<br />

community ties and <strong>of</strong> individual, cultural, and socioeconomic<br />

factors that affect our decision-making processes.<br />

The autonomy <strong>of</strong> each individual is no longer seen as an<br />

abstract but rather as a contextual concept. 34,36<br />

As oncologists, we consider part <strong>of</strong> our pr<strong>of</strong>essional responsibility<br />

to acknowledge our patients’ needs based on<br />

Authors’ Disclosures <strong>of</strong> Potential Conflicts <strong>of</strong> Interest<br />

Author<br />

Antonella Surbone*<br />

Lea Baider*<br />

*No relevant relationships to disclose.<br />

Employment or<br />

Leadership<br />

Positions<br />

Consultant or<br />

Advisory Role<br />

1. Spillman B, Black K. Staying the Course: Trends in Family Caregiving.<br />

Washington, DC: AARP; 2005.<br />

2. Baider L, Cooper CL, De-Nour K, eds. Cancer and the Family: Second<br />

Edition. Sussex, England: J Wiley & Sons, Ltd; 2000.<br />

3. Baider L, Surbone A. Cancer and the family: The silent words <strong>of</strong> truth.<br />

J Clin Oncol. 2010;28:1269-1272.<br />

4. Institute <strong>of</strong> Medicine, National Academy Press. “Envisioning the National<br />

Healthcare Quality Report (2001).” http://books.nap.edu/openbook.<br />

php?record_id�10073&page�41. Accessed Matrch 12, <strong>2012</strong>.<br />

5. <strong>American</strong> Academy <strong>of</strong> Family Physicians. “Family, Definition <strong>of</strong>.” http:<br />

//www.aafp.org/online/en/home/policy/policies/f/familydefinition<strong>of</strong>.html. Accessed<br />

March 12, <strong>2012</strong>.<br />

6. <strong>American</strong> Academy <strong>of</strong> Pediatrics (AAP) and <strong>American</strong> College <strong>of</strong> Emergency<br />

Physicians (ACEP). Patient- and family-centered care and the role <strong>of</strong><br />

the emergency physician providing care to a child in the emergency department.<br />

Policy Statement. Pediatrics. 2006;118:2242-2244.<br />

7. Committee on Hospital Care and <strong>American</strong> Academy <strong>of</strong> Pediatrics.<br />

Family-centered care and the pediatrician’s role. Pediatrics. 2003;112:691-<br />

696.<br />

8. Institute for Family-Centered Care. Advancing the Practice <strong>of</strong> Patientand<br />

Family-Centered Care: How to Get Started.” http://www.ipfcc.org/pdf/<br />

getting_started.pdf. Accessed March 12, <strong>2012</strong>.<br />

9. Institute for Family-Centered Care. Hospitals and Communities Moving<br />

Forward with Patient- and Family-Centered Care: Enhancing Quality and<br />

Safety for Patients and Their Families http://www.familycenteredcare.org/<br />

resources/multimedia/index.html. Accessed March 12, <strong>2012</strong>.<br />

10. World Health Organization. Cancer Pain Relief and Palliative Care:<br />

Report <strong>of</strong> a WHO Expert Committee Technical Report Series No. 804. Geneva,<br />

Switzerland: World Health Organization; 1990.<br />

11. Teno JM, Casey VA, Welch LC, et al. Patient-focused, family-centered<br />

end-<strong>of</strong>-life medical care. J Pain Sympt Manag. 2001;22:738-751.<br />

12. National Alliance for Caregiving and AARP. Caregiving in the US.<br />

Washington, DC: AARP and NAC; 2005.<br />

13. Soothill K, Morris SM, Thomas C, et al. The universal, situational, and<br />

personal needs <strong>of</strong> cancer patients and their main carers. Eur J Oncol Nurs.<br />

2003;7:5-13.<br />

e18<br />

religious beliefs, family traditions, and family roles and to<br />

involve family members, especially caregivers, in the processes<br />

<strong>of</strong> information giving and decision making <strong>of</strong>fering<br />

them support and counseling in full awareness and acceptance<br />

<strong>of</strong> differences.<br />

Family adaptation to cancer diagnosis is continuous<br />

across different stages—from hope to rebellion to despair—<br />

and family resilience, recovery, and growth may emerge<br />

from adversity. 37,38 Before encountering a major disease, a<br />

family may have never had to negotiate a situation perceived<br />

as threatening not only to the normal life <strong>of</strong> its<br />

members but also to the integrity <strong>of</strong> the family system. As a<br />

consequence <strong>of</strong> such complexities, part <strong>of</strong> the intimacy<br />

between the oncologist and his or her patient may be, or<br />

appear, lost. We still have to learn how to best keep our<br />

direct connection with cancer patients, while including<br />

among our responsibilities also those to their families and<br />

caregivers. This additional challenge for all oncologists is<br />

part <strong>of</strong> the novel paradigm <strong>of</strong> care where pr<strong>of</strong>essional responsibilities<br />

are no longer directed only at patients but also<br />

at their families.<br />

Stock<br />

Ownership Honoraria<br />

REFERENCES<br />

Research<br />

Funding<br />

Expert<br />

Testimony<br />

SURBONE AND BAIDER<br />

Other<br />

Remuneration<br />

14. Frank A. Relations <strong>of</strong> caring: Demoralization and remoralization in the<br />

clinic. Int J Human Caring. 2002;6:13-19.<br />

15. Given B, Given CW, Kozachik S. Family support in advanced cancer.<br />

CA Can J Clin. 2001;51:213-231.<br />

16. Yabr<strong>of</strong>f KR, Kim Y. Time costs associated with informal caregiving for<br />

cancer survivors. Cancer. 2009;115:362-4373.<br />

17. Fegg MJ, Brandstätter M, Kramer M, Kögler M, et al. Meaning in life<br />

in palliative care patients. J Pain Symptom Manag. 2010;40:502-509.<br />

18. Surbone A, Baider L, Balducci L. Caregiving to elderly patients:<br />

clinical, ethical, and psychosocial challenges. In Govindan R (ed). ASCO<br />

Educational Book. Alexandria, VA: <strong>American</strong> <strong>Society</strong> <strong>of</strong> <strong>Clinical</strong> <strong>Oncology</strong>,<br />

2010.<br />

19. Baider L, Goldzweig G. Exploration <strong>of</strong> Family Care: A Multicultural<br />

Approach. In <strong>Clinical</strong> Psycho-<strong>Oncology</strong>: An International Perspective. L<br />

Grassi, M Riba (eds.) Chichester, West Sussex, UK: J Wiley & Sons Ltd.;<br />

<strong>2012</strong>;187-196.<br />

20. Grov EK, Fossa SD, Sørebø O, et al. Primary caregivers <strong>of</strong> cancer<br />

patients in the palliative phase: A path analysis <strong>of</strong> variables influencing their<br />

burden. Soc Sci Med. 2006;63:2429-2439.<br />

21. Baider L. Unsteady Balance: The Constraints <strong>of</strong> Informal Care. J Pediatr<br />

Hematol Oncol. 2011;33:S108-S111.<br />

22. Surbone A. The difficult task <strong>of</strong> family caregiving in oncology: Which<br />

roles do autonomy and gender play? Supp Care Cancer. 2003;11:617-619.<br />

23. Kagawa-Singer M, Valdez D, Yu M, et al. Cancer, culture and health<br />

disparities: Time to chart a new course? CA Can J Clin. 2010;60:12-39.<br />

24. Searight HR, Gafford J. Cultural diversity at the end <strong>of</strong> life. Am Fam<br />

Phys. 2007;72:515-522.<br />

25. Kamen BA. Cancer pain, suffering, and spirituality: A Middle Eastern<br />

Cancer Consortium meeting. J Pediatr Hematol Oncol. 2010;32:341.<br />

26. Mobeireek AF, Al-Kassimi F, Al-Zahrani K, et al. Information disclosure<br />

and decision-making: The Middle East versus the Far East. J Med<br />

Ethics. 2009;34:225-229.<br />

27. Abdulhameed HE, Hammami MM, Hameed Mohamed EA. Disclosure<br />

<strong>of</strong> terminal illness to patients and families: Diversity <strong>of</strong> governing codes in 14<br />

Islamic countries. J Med Ethics. 2011;37:472-475.<br />

28. Bülow HH, Sprung CL, Reinhart K, et al. The world’s major religions’

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