It was particularly exciting that Professor Richard Harding was able to advocate for the inclusion of a Palliative Care section in this document. This is a significant milestone in advocating for the integration of Palliative Care into HIV Care and Treatment, even in our age of ART availability.
These updated Standards of Care[1] repeatedly highlight the importance of true, person-centred care “if services are to provide care for people living with HIV which is relevant, appropriate and accessible” (p.3). Additionally, the guidelines rightly highlight key elements of psychological and social care that can positively impact treatment adherence and quality of life. Yet glaringly absent is any mention of spiritual assessment as a routine element of care and referral to professional spiritual care when assessment indicates spiritual distress.
I am at a loss to explain this absence from a 2018 document on standards of care. Perhaps it is a continuing indication that as palliative care advocates, we still have work to do teaching other health care professionals that person-centred spiritual assessment and care, is not proselytizing toward any specific set of beliefs. ‘‘Spirituality is a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred. Spirituality is expressed through beliefs, values, traditions, and practices.’’[2]
A growing body of research evidence from peer-reviewed journals indicates that spiritual assessment must be included as a standard of practice for quality, person-centered care.[3] [4] [5] [6] Every medical professional providing person-centred care must be trained and able to perform an initial spiritual screening and history, such as the FICA tool. [7] [8] We can no longer consider that we are providing quality care in the absence of documented spiritual assessment and then referral to professional, certified spiritual care providers or chaplains when there are indications of spiritual distress. This is currently available in the UK through the NHS.[9]
Although the largest body of research integrating spiritual care into health care stems from oncology and palliative care, there is a growing body of evidence that highlights its importance in care for people living with HIV. We continue to strive toward improved, evidenced based tools for spiritual screening and spiritual assessment for children and adolescents, but initial research indicates that this is an essential aspect for person-centered care.[10] Even when previous experiences of faith and religion were negative, many individuals continued to use prayer and meditation as a positive coping mechanism.[11]
Spiritual support has been described by many, including individuals from marginalized groups, as critical to their well-being and HIV treatment adherence.[12] In a systematic literature review, Kendrik[13] was able to document religious and spiritual practices that could either hinder or enhance HIV testing and treatment. This is essential information for any health care provider. An article in The Lancet [14] noted that improved understanding of the diversity of spiritual and religious teachings can be important for both clinical medicine and public health interventions.
One study noted that 73% of HIV positive respondents were experiencing some sort of spiritual distress or impaired religiosity.[15] In another longitudinal study, 65% of participants were able to use spiritual coping mechanisms to enhance their sense of well-being and HIV care.[16] Lucy Selman and colleagues in a study of HIV care in Kenya and Uganda noted that while counseling was provided, spiritual support was very infrequent despite the presence of spiritual distress in HIV positive patients.[17]
If we are truly striving to provide person-centered care for people living with HIV, spiritual assessment and care must be included in our standards of practice. As we meet the UNAIDS goal of 90-90-90,[18] in the UK and globally, the integration of Palliative Care into HIV Care, including routine spiritual assessment and spiritual care, is essential.
Richard W. Bauer, M.Div, MSW
Eastern Deanery AIDS Relief Programme
Nairobi
References
[1] http://www.bhiva.org/standards-of-care-2018.aspx
[2] Puchalski, C. M., Vitillo, R., Hull, S. K., & Reller, N. (2014). Improving the Spiritual Dimension of Whole Person Care: Reaching National and International Consensus. Journal of Palliative Medicine, 17(6), 642–656.
[3] Kruizinga, R., Scherer-Rath, M., Schilderman, J. B. A. M., Puchalski, C. M., & van Laarhoven, H. W. M. (2017). Towards a fully-fledged integration of spiritual care and medical care. Journal of Pain and Symptom Management.
[4] Puchalski, C. M., Blatt, B., Kogan, M., & Butler, A. (2014). Spirituality and Health: The Development of a Field. Academic Medicine, 89(1)
[5] Steinhauser, K. E., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., … Balboni, T. A. (2017). State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes. Journal of Pain and Symptom Management, 54(3), 428–440.
[6] Balboni, T. A., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., … Steinhauser, K. E. (2017). State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions. Journal of Pain and Symptom Management, 54(3), 441–453.
[7] Zollfrank, A. A., Trevino, K. M., Cadge, W., Balboni, M. J., Thiel, M. M., Fitchett, G., … Balboni, T. A. (2015). Teaching Health Care Providers To Provide Spiritual Care: A Pilot Study. Journal of Palliative Medicine, 18(5), 408–414.
[8] Puchalski, C. M. (2014). The FICA Spiritual History Tool #274. Journal of Palliative Medicine, 17(1), 105–106.
[10] Smith, S. T., Dawson-Rose, C., Blanchard, J., Kools, S., & Butler, D. (2016). “I Am Normal”: Claiming Normalcy in Christian-Identified HIV-Infected Adolescent and Emerging Adult Males. Journal of the Association of Nurses in AIDS Care, 27(6), 835–848.
[11] Jeffries, W. L., Okeke, J. O., Gelaude, D. J., Torrone, E. A., Gasiorowicz, M., Oster, A. M., … Bertolli, J. (2014). An exploration of religion and spirituality among young, HIV-infected gay and bisexual men in the USA. Culture, Health & Sexuality, 16(9), 1070–1083.
[12] Foster, M. L., Arnold, E., Rebchook, G., & Kegeles, S. M. (2011). ‘It’s my inner strength’: spirituality, religion and HIV in the lives of young African American men who have sex with men. Culture, Health & Sexuality, 13(9), 1103–1117.
[13] Medved Kendrick, H. (2017). Are religion and spirituality barriers or facilitators to treatment for HIV: a systematic review of the literature. AIDS Care, 29(1), 1–13.
[14] Tomkins, A., Duff, J., Fitzgibbon, A., Karam, A., Mills, E. J., Munnings, K., … others. (2015). Controversies in faith and health care. The Lancet, 386(10005), 1776–1785.
[15] Pino, CM, Gomes, ET, Traiano, MFC, Calalcanti, ATA, Andrade, MS, Valenca, MP. (2017). Impaired religiosity and spiritual distress in people living with HIV/AIDS. Revista Gaúcha de Engermagem, 38(2), 1-7.
[16] Kremer, H., & Ironson, G. (2014). Longitudinal Spiritual Coping with Trauma in People with HIV: Implications for Health Care. AIDS Patient Care and STDs, 28(3), 144–154.
[17] Selman, L., Simms, V., Penfold, S., Powell, R. A., Mwangi-Powell, F., Downing, J., … Harding, R. (2013). ‘My dreams are shuttered down and it hurts lots’–a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda. BMC Palliative Care, 12, 35.
[18] http://www.unaids.org/en/resources/documents/2017/90-90-90
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