106
FAST FACTS AND CONCEPTS
I—Importance and Influence What importance does your faith or belief have in your life? Have your beliefs influenced you in how you handle stress? Do you have specific beliefs that might influence your health care decisions? If so, are you willing to share those with your health care team? C—Community Are you part of a spiritual or religious community? This community can be church, temple, mosque, or like-minded friends, family, etc. Is this of support to you and how? Is there a group of people you really love or who are important to you? A—Address/Action in Care How should I address these issues in your health care? This is also to remind clinicians to develop a plan to address patient spiritual distress or other spiritual issues. More information and educational materials about FICA are available at www.gwish.org/. References 1. Puchalski CM, Ferrell B, Viriani R, et al.: Improving the quality of spiritual care as a dimension of palliative care: Consensus conference report. J Palliat Med 2009;12: 885–903. 2. Puchalski CM, Romer AL: Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 2000;3:129–137. 3. Cohen SR, Mount BM, Tomas JJ, Mount LF: Existential wellbeing is an important determinant of quality of life: Evidence from the McGill quality of life questionnaire. Cancer 1996;77:576–586. 4. Gall TL, Comblatt MW: Breast cancer survivors give voice: A qualitative analysis of spiritual factors in long-term adjustment. Psychooncology 2002;11:524–535.
5. George LK, Larson DB, Koenig HG, McCullough ME: Spirituality and health: What we know, what we need to know. J Soc Clin Psychol 2000;19:102–116. 6. Jenkins RA, Pargament KI: Religion and spirituality as resources for coping with cancer. J Psychosocial Oncol 1995; 13:51–74. 7. Koenig HG: A commentary: The role of religion and spirituality at the end of life. Gerontologist 2002;42(suppl 3):20–23. 8. Puchalski CM: Addressing the spiritual needs of patients. Can Treat Research 2008;140:79–91. 9. Tsevat J, Sherman SN, McElwee JA, et al.: The will to live among HIV-infected patients. Ann Int Med 1999;131:194–198. 10. Balboni TA, Vanderwerker LC, Block SD, et al.: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007;25:555–560. 11. Delgado-Guay MO, Hui D, Parsons HA, et al.: Spirituality, religiosity, and spiritual pain in advanced cancer patients. J Pain Symptom Manage 2011;41:986–994. 12. Pargament KI: The Psychology of Religion and Coping. New York: Guilford Press, 1997. 13. Balboni T, Balboni M, Paulk, ME, et al.: Support of cancer patients’ spiritual needs and associations with medical care costs at the end of life. Cancer 2011;117:5383–5391. 14. Sulmasy DP: A biopsychosocial-spiritual model for the care of patients at the end of life. Gerontologist 2002;42(spec 3): 24–33. 15. Borneman T, Ferrell B, Puchalski CM: Evaluation of the FICA tool for spiritual assessment. J Pain Symptom Manage 2010;40:163–173.
Address correspondence to: Christina M. Puchalski, MD George Washington Institute for Spirituality and Health 2300 K Street NW Warwick Building, Suite 313 Washington, DC 20037 E-mail: [email protected]
DOI: 10.1089/jpm.2013.9457
End-of-Life and Advance Care Planning Considerations for Lesbian, Gay, Bisexual, and Transgender Patients #275 Andrew Lawton, MD, Jocelyn White, MD, and Erik K. Fromme, MD
Background
T
he end-of-life care needs of lesbian, gay, bisexual, and transgender/transsexual (LGBT) patients are in many ways identical to those of non-LGBT patients. However, health care providers should recognize that some unique needs and considerations do exist. This Fast Fact discusses the issues of advance care planning and partner and family involvement as they pertain to LGBT patients. It ends with a discussion about open communication regarding sexual orientation and how this may be facilitated by providers. While
there is minimal literature on the end-of life care needs specific to transgender individuals, we feel that the summary and recommendations presented below, though based largely on data regarding lesbian, gay, and bisexual patients, apply to the transgender population as well. Advance Care Planning The inclusion of same-sex partners in decision making and treatment planning has been repeatedly shown to be a priority for LGBT patients facing life-limiting illness.1
FAST FACTS AND CONCEPTS Those who desire their same-sex partner to be their
health care representative (‘‘health care power of attorney’’ or ‘‘health care agent/proxy’’) must complete an advance directive (AD) formally making such a designation. Without such documentation, a same-sex partner may have limited or no rights regarding the medical decision making and treatment planning for her or his partner, especially if there has been a history of nonacceptance of the same-sex relationship by the patient’s biological family members.2,3 One study suggests that while a majority of LGBT patients are knowledgeable about ADs and the appointment of health care proxies, only 49% of those who desire a same-sex partner to be their surrogate decision maker have completed the necessary documentation.3 Providers are encouraged to educate patients about the importance of completing such documentation, such that their medical and end-of-life wishes may be met. State-specific legal recognition of same-sex marriage is expanding in the United States. However, even legally married LGBT individuals who want their partner to be their surrogate decision maker are still advised to complete a legal AD designating that. For instance, they may be hospitalized while traveling in a state that does not recognize the legality of their marriage. Partner and Family Involvement LGBT patients may receive support from unique social cir-
cles, sometimes referred to as ‘‘lavender families’’ or ‘‘families of choice,’’ with whom they find acceptance. Such families may be comprised of heterosexual friends, other members of the LGBT community, co-workers, and biological relatives, all of whom may provide support at the end of life.2,4 The end of life can be a time of reunion and reconciliation with estranged family and friends, and this may be especially true for LGBT patients who may have experienced isolation from these individuals in the past due to their sexual orientation.2 Providers should be sensitive to the potentially complex family and social dynamics that these reunions can create for both the patient and his or her partner. For instance, a patient’s family may initiate reconciliation with a patient, but in a way that denies the role of the partner or family of choice. Additionally, when such reunions do not occur, feelings of grief, loss, and abandonment experienced by an LGBT individual at the end of life may be magnified. Clinicians may consider inquiring about whether a patient’s biological family knows that a patient’s legally designated surrogate decision maker is the patient’s LGBT partner. Trouble-shooting with the patient on how to proactively communicate this may help avoid conflicts as the patient is actively dying. Partners facing the loss of their same-sex loved one may experience disenfranchised grief—grief that is not acknowledged or viewed as legitimate, owing to the relationship not being fully recognized by one’s family or community.5,6 Such disenfranchisement may limit the partner’s ability to grieve openly, result in a lack of bereavement support from health care professionals, and augment feelings of isolation.2,5 Palliative and primary care providers should be sensitive to this when monitoring the
107 grief reaction of a newly widowed partner, and proactively offer bereavement support services as indicated. Discussion of Sexual Orientation The decision of LGBT patients to discuss their sexual
orientation with health care providers may be affected by past negative reactions to such disclosure and, in some cases, concerns about discrimination.1 As sexual orientation is intrinsic to a patient’s social history, its recognition and acceptance by health care providers is essential to the provision of holistic and patient-centered palliative care. Additionally, an appreciation of a patient’s sexuality and sexual orientation is perhaps especially pertinent to end-of-life care, given the importance of assisting patients in life review and reflection.1 Clinicians should use inclusive language when communicating with all patients.1 The terms ‘‘significant other’’ or ‘‘partner,’’ for example, are favored over ‘‘husband/wife/ spouse,’’ as the latter may not fully reflect the significant relationships in a patient’s life.7 Clinicians should generally use the term, once established, that patients themselves use to describe their significant relationship, e.g., ‘‘boyfriend,’’ ‘‘girlfriend,’’ ‘‘wife,’’ ‘‘husband,’’ ‘‘partner,’’ ‘‘roommate.’’ When inquiring about a patient’s social history and support network, consider asking one or more of the following: Who is family for you? Whom do you most rely on for support? Do you currently have a significant other or partner? These questions avoid assumptions and allow patients to respond openly about their sexual orientation and about those who may play an important role in their end-of-life care. Resources LGBT patients and their health care providers can find more information on advance care planning and other pertinent health care topics at the following websites: National Resource Center On LGBT Aging: www
.lgbtagingcenter.org Human Rights Campaign Section on Health & Aging:
www.hrc.org/issues/health-and-aging References 1. Harding R, Epiphaniou E, Chidgey-Clark J: Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: A systematic review. J Palliat Med 2012; 15:602–611. 2. Rawlings D: End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. Int J Palliat Nurs 2012; 18:29–34. 3. Stein G, Bonuck KA: Attitudes on end-of-life and advance care planning in the lesbian and gay community. J Palliat Med 2001;4:173–190. 4. Neville S, Henrickson M: The constitution of ‘lavender families:’ A LGB perspective. J Clin Nurs 2009;18:849–856. 5. Cartwright C, Hughes M, Lienert T: End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex 2012;14:537–548.
108 6. Almack K, Seymour J, Bellamy G: Exploring the impact of sexual orientation on experiences and concerns about end-oflife care and on bereavement for lesbian, gay and bisexual older people. Sociology 2010;44:908–924. 7. National Resource Center on LBGT Aging: Inclusive Services for LGBT Older Adults: A Practical Guide To Creating Welcoming Agencies. National Resource Center on LBGT Aging, New York, 2012. www.lgbtagingcenter.org/resources/resource .cfm?r = 487. (Last accessed May 2, 2013.)
FAST FACTS AND CONCEPTS Address correspondence to: Andrew Lawton, MD Oregon Health & Science University 3181 SW Sam Jackson Park Road Mail Code 0930 Portland, OR 97239–3098 E-mail: [email protected]
FAST FACTS AND CONCEPTS
I—Importance and Influence What importance does your faith or belief have in your life? Have your beliefs influenced you in how you handle stress? Do you have specific beliefs that might influence your health care decisions? If so, are you willing to share those with your health care team? C—Community Are you part of a spiritual or religious community? This community can be church, temple, mosque, or like-minded friends, family, etc. Is this of support to you and how? Is there a group of people you really love or who are important to you? A—Address/Action in Care How should I address these issues in your health care? This is also to remind clinicians to develop a plan to address patient spiritual distress or other spiritual issues. More information and educational materials about FICA are available at www.gwish.org/. References 1. Puchalski CM, Ferrell B, Viriani R, et al.: Improving the quality of spiritual care as a dimension of palliative care: Consensus conference report. J Palliat Med 2009;12: 885–903. 2. Puchalski CM, Romer AL: Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 2000;3:129–137. 3. Cohen SR, Mount BM, Tomas JJ, Mount LF: Existential wellbeing is an important determinant of quality of life: Evidence from the McGill quality of life questionnaire. Cancer 1996;77:576–586. 4. Gall TL, Comblatt MW: Breast cancer survivors give voice: A qualitative analysis of spiritual factors in long-term adjustment. Psychooncology 2002;11:524–535.
5. George LK, Larson DB, Koenig HG, McCullough ME: Spirituality and health: What we know, what we need to know. J Soc Clin Psychol 2000;19:102–116. 6. Jenkins RA, Pargament KI: Religion and spirituality as resources for coping with cancer. J Psychosocial Oncol 1995; 13:51–74. 7. Koenig HG: A commentary: The role of religion and spirituality at the end of life. Gerontologist 2002;42(suppl 3):20–23. 8. Puchalski CM: Addressing the spiritual needs of patients. Can Treat Research 2008;140:79–91. 9. Tsevat J, Sherman SN, McElwee JA, et al.: The will to live among HIV-infected patients. Ann Int Med 1999;131:194–198. 10. Balboni TA, Vanderwerker LC, Block SD, et al.: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007;25:555–560. 11. Delgado-Guay MO, Hui D, Parsons HA, et al.: Spirituality, religiosity, and spiritual pain in advanced cancer patients. J Pain Symptom Manage 2011;41:986–994. 12. Pargament KI: The Psychology of Religion and Coping. New York: Guilford Press, 1997. 13. Balboni T, Balboni M, Paulk, ME, et al.: Support of cancer patients’ spiritual needs and associations with medical care costs at the end of life. Cancer 2011;117:5383–5391. 14. Sulmasy DP: A biopsychosocial-spiritual model for the care of patients at the end of life. Gerontologist 2002;42(spec 3): 24–33. 15. Borneman T, Ferrell B, Puchalski CM: Evaluation of the FICA tool for spiritual assessment. J Pain Symptom Manage 2010;40:163–173.
Address correspondence to: Christina M. Puchalski, MD George Washington Institute for Spirituality and Health 2300 K Street NW Warwick Building, Suite 313 Washington, DC 20037 E-mail: [email protected]
DOI: 10.1089/jpm.2013.9457
End-of-Life and Advance Care Planning Considerations for Lesbian, Gay, Bisexual, and Transgender Patients #275 Andrew Lawton, MD, Jocelyn White, MD, and Erik K. Fromme, MD
Background
T
he end-of-life care needs of lesbian, gay, bisexual, and transgender/transsexual (LGBT) patients are in many ways identical to those of non-LGBT patients. However, health care providers should recognize that some unique needs and considerations do exist. This Fast Fact discusses the issues of advance care planning and partner and family involvement as they pertain to LGBT patients. It ends with a discussion about open communication regarding sexual orientation and how this may be facilitated by providers. While
there is minimal literature on the end-of life care needs specific to transgender individuals, we feel that the summary and recommendations presented below, though based largely on data regarding lesbian, gay, and bisexual patients, apply to the transgender population as well. Advance Care Planning The inclusion of same-sex partners in decision making and treatment planning has been repeatedly shown to be a priority for LGBT patients facing life-limiting illness.1
FAST FACTS AND CONCEPTS Those who desire their same-sex partner to be their
health care representative (‘‘health care power of attorney’’ or ‘‘health care agent/proxy’’) must complete an advance directive (AD) formally making such a designation. Without such documentation, a same-sex partner may have limited or no rights regarding the medical decision making and treatment planning for her or his partner, especially if there has been a history of nonacceptance of the same-sex relationship by the patient’s biological family members.2,3 One study suggests that while a majority of LGBT patients are knowledgeable about ADs and the appointment of health care proxies, only 49% of those who desire a same-sex partner to be their surrogate decision maker have completed the necessary documentation.3 Providers are encouraged to educate patients about the importance of completing such documentation, such that their medical and end-of-life wishes may be met. State-specific legal recognition of same-sex marriage is expanding in the United States. However, even legally married LGBT individuals who want their partner to be their surrogate decision maker are still advised to complete a legal AD designating that. For instance, they may be hospitalized while traveling in a state that does not recognize the legality of their marriage. Partner and Family Involvement LGBT patients may receive support from unique social cir-
cles, sometimes referred to as ‘‘lavender families’’ or ‘‘families of choice,’’ with whom they find acceptance. Such families may be comprised of heterosexual friends, other members of the LGBT community, co-workers, and biological relatives, all of whom may provide support at the end of life.2,4 The end of life can be a time of reunion and reconciliation with estranged family and friends, and this may be especially true for LGBT patients who may have experienced isolation from these individuals in the past due to their sexual orientation.2 Providers should be sensitive to the potentially complex family and social dynamics that these reunions can create for both the patient and his or her partner. For instance, a patient’s family may initiate reconciliation with a patient, but in a way that denies the role of the partner or family of choice. Additionally, when such reunions do not occur, feelings of grief, loss, and abandonment experienced by an LGBT individual at the end of life may be magnified. Clinicians may consider inquiring about whether a patient’s biological family knows that a patient’s legally designated surrogate decision maker is the patient’s LGBT partner. Trouble-shooting with the patient on how to proactively communicate this may help avoid conflicts as the patient is actively dying. Partners facing the loss of their same-sex loved one may experience disenfranchised grief—grief that is not acknowledged or viewed as legitimate, owing to the relationship not being fully recognized by one’s family or community.5,6 Such disenfranchisement may limit the partner’s ability to grieve openly, result in a lack of bereavement support from health care professionals, and augment feelings of isolation.2,5 Palliative and primary care providers should be sensitive to this when monitoring the
107 grief reaction of a newly widowed partner, and proactively offer bereavement support services as indicated. Discussion of Sexual Orientation The decision of LGBT patients to discuss their sexual
orientation with health care providers may be affected by past negative reactions to such disclosure and, in some cases, concerns about discrimination.1 As sexual orientation is intrinsic to a patient’s social history, its recognition and acceptance by health care providers is essential to the provision of holistic and patient-centered palliative care. Additionally, an appreciation of a patient’s sexuality and sexual orientation is perhaps especially pertinent to end-of-life care, given the importance of assisting patients in life review and reflection.1 Clinicians should use inclusive language when communicating with all patients.1 The terms ‘‘significant other’’ or ‘‘partner,’’ for example, are favored over ‘‘husband/wife/ spouse,’’ as the latter may not fully reflect the significant relationships in a patient’s life.7 Clinicians should generally use the term, once established, that patients themselves use to describe their significant relationship, e.g., ‘‘boyfriend,’’ ‘‘girlfriend,’’ ‘‘wife,’’ ‘‘husband,’’ ‘‘partner,’’ ‘‘roommate.’’ When inquiring about a patient’s social history and support network, consider asking one or more of the following: Who is family for you? Whom do you most rely on for support? Do you currently have a significant other or partner? These questions avoid assumptions and allow patients to respond openly about their sexual orientation and about those who may play an important role in their end-of-life care. Resources LGBT patients and their health care providers can find more information on advance care planning and other pertinent health care topics at the following websites: National Resource Center On LGBT Aging: www
.lgbtagingcenter.org Human Rights Campaign Section on Health & Aging:
www.hrc.org/issues/health-and-aging References 1. Harding R, Epiphaniou E, Chidgey-Clark J: Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: A systematic review. J Palliat Med 2012; 15:602–611. 2. Rawlings D: End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. Int J Palliat Nurs 2012; 18:29–34. 3. Stein G, Bonuck KA: Attitudes on end-of-life and advance care planning in the lesbian and gay community. J Palliat Med 2001;4:173–190. 4. Neville S, Henrickson M: The constitution of ‘lavender families:’ A LGB perspective. J Clin Nurs 2009;18:849–856. 5. Cartwright C, Hughes M, Lienert T: End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex 2012;14:537–548.
108 6. Almack K, Seymour J, Bellamy G: Exploring the impact of sexual orientation on experiences and concerns about end-oflife care and on bereavement for lesbian, gay and bisexual older people. Sociology 2010;44:908–924. 7. National Resource Center on LBGT Aging: Inclusive Services for LGBT Older Adults: A Practical Guide To Creating Welcoming Agencies. National Resource Center on LBGT Aging, New York, 2012. www.lgbtagingcenter.org/resources/resource .cfm?r = 487. (Last accessed May 2, 2013.)
FAST FACTS AND CONCEPTS Address correspondence to: Andrew Lawton, MD Oregon Health & Science University 3181 SW Sam Jackson Park Road Mail Code 0930 Portland, OR 97239–3098 E-mail: [email protected]
