- Email: [email protected]
Re: Caregivers and Existential and Spiritual Distress
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physical function. Various questionnaires exist, but an evaluation of these for use among palliative patients is needed. Line Oldervoll, PhD Department of Cancer Research and Molecular Medicine The Norwegian University of Technology and Science Trondheim, Norway doi:10.1016/j.jpainsymman.2006.10.002
References 1. Oldervoll LM, Loge JH, Paltiel H, et al. The effect of a physical exercise program in palliative care: a phase II study. J Pain Symptom Manage 2006; 31(5):421e430. 2. Oldervoll LM, Loge JH, Paltiel H, et al. Are palliative cancer patients willing and able to participate in a physical exercise program? Palliat Support Care 2005;3:281e287. 3. Segal RJ, Reid RD, Courneya KS, et al. Resistance exercise in men receiving androgen deprivation therapy for prostate cancer. J Clin Oncol 2003;21: 1653e1659. 4. Pinto BM, Frierson GM, Rabin C, et al. Home-based physical activity intervention for breast cancer patients. J Clin Oncol 2005;23:3577e3587. 5. Simmonds MJ. Physical function in patients with cancer: psychometric characteristics and clinical usefulness of a physical performance test battery. J Pain Symptom Manage 2002;24:404e414.
Re: Caregivers and Existential and Spiritual Distress To the Editor: While Boston and Mount’s1 recent thoughtful paper usefully seeks to explore caregivers’ perspectives on existential and spiritual distress in palliative care, there appeared an implicit assumption that these themes will almost always necessarily be present during these predicaments, and, therefore, an exploration of them needs to be actively encouraged by caregivers. Furthermore, there seemed to be a further supposition that spiritual concerns would always be usefully focused on at this time. This perspective is underlined by statements in their paper such as ‘‘Spiritual/existential concerns are important determinants of enhanced quality of
Letters
Vol. 32 No. 6 December 2006
life, the primary goal of palliative care.’’1 The authors support this implicit conjecture by arguing that patients who experience a deep sense of meaning and purpose in life may be better able to cope with difficult symptoms and live longer. This perspective reflects a burgeoning emphasis on spirituality in thinking about health. The new convention appears to be that it is the neglect of spirituality that is frequently blamed for the limits to modern scientific medicine in improving well-being of populations.2 Spirituality is gradually being elevated in the academic literature in an overall conception of well-being and coping skills, almost, it seems, as an attempt to compensate for medicine’s scientific orientation. The evidence, however, of the benefits of spirituality in terms of mental health appear more mixed than Boston and Mount’s paper appears to acknowledge, plus there are real difficulties in integrating spirituality into clinical practice and scientific research, which this paper, along with much current literature, appears to side step. There have been, however, some recent fascinating advances in the scientific literature on this front. For example, in a recent study, spirituality was associated with lower depressive symptoms in a population of the HIV-positive, and also in a rare attempt at biological integration, decreased 24-hour urinary-free cortisol output.3 Religious involvement also has been associated with lower mortality rates in a variety of populations4 and enhanced immunological function appears to mediate this relationship.5 However, it is also important to note that when it comes to investigations of how spirituality assists with coping in fields like cancer, the evidence is decidedly mixed.6 For example, a recent meta-analysis of coping with cancer found that in seven studies there was some evidence for the beneficial effect of religious coping, but one of these also found religious coping to be detrimental in a subsample of their population. A further three studies found religious coping to be harmful and seven found nonsignificant results.6 Much of this literature is produced by authors whose base is the United States and there may be a North American cultural bias in seeing spirituality as lying so close to the heart of psychological well-being, which would stand in strong contrast to views of mental health from
Vol. 32 No. 6 December 2006
elsewhere in the world, particularly perhaps Europe. This is a particularly vital issue for carers from elsewhere in the world. Recent surveys have established that while 83% of Americans felt God was important in their lives, this only applied to 49% of people in Europe.7 In the United States, 47% attend a place of worship regularly and 91% believe in God/ higher power, while in the UK, only 12% of individuals attend church on a regular basis and a mere 21% have no doubts about the existence of God.6 Beyond the not insignificant problem of cultural bias in seeing spirituality as lying at the core of mental well-being, there is an additional issue that scientific investigation of spirituality is leading to the view that spiritual coping may be more complex and certainly not unidimensional.6 For example, the avowedly religious might differ markedly in the security of their relationship with a deity, plus may have different conceptions of its character; negative religious coping appears linked with a distant and punishing God.6 Within a spiritual outlook, there may or may not be helpful or unhelpful religious rituals, selfreliance as opposed to giving over control to God, and positive or negative aspects of praying for a miracle. We, therefore, need more research investigating what aspects of spirituality are associated with better mental health, rather than assuming that spirituality is in itself an inherently positive contribution to self-transcendence and, therefore, positive coping. The reality is that many nonspiritual people from all over the world exhibit excellent mental health. So to assume spirituality is always to be encouraged if carers want to improve the well-being of populations could be considered insulting to this not insignificant group. It is also possible that spiritual orientation could even be counterproductive in certain coping scenarios, including facing a terminal disease. Caregivers might particularly struggle with how to assist when they also observe suffering that appears to be exacerbated by a spiritual outlook. Focus group research, such as that produced by Boston and Mount, is key to helping us prepare hypotheses to be tested by more quantitative methods. But it should perhaps be more open to the possibility that spirituality is not always necessarily helpful. Surely the best coping of all is flexible and
Letters
517
responsive to the demands of patient and their particular predicament. Raj Persaud, FRCPsych Bethlem Royal and Maudsley NHS Hospitals Trust London, United Kingdom doi:10.1016/j.jpainsymman.2006.07.004
References 1. Boston PH, Mount BM. The caregiver’s perspective on existential and spiritual distress in palliative care. J Pain Symptom Manage 2006;32(1):13e26. 2. Cloninger RC. The science of well-being: an integrated approach to mental health and its disorders. World Psychiatry 2006;5:71e76. 3. Carrico AW, Ironson G, Antoni MH, et al. A path model of the effects of spirituality on depressive symptoms and 24-h urinary-free cortisol in HIV-positive persons. J Psychosom Res 2006;61:51e58. 4. McCullough ME, Hoyt WT, Larson DB, Koenig HG, Thoresen CE. Religious involvement and mortality: a meta-analytic review. Health Psychol 2000;19:211e222. 5. Lutgendorf SK, Russell D, Ullrich P, Harris TB, Wallace R. Religious participation, interleukin-6, and mortality in older adults. Health Psychol 2004; 23:465e475. 6. Thune´-Boyle IC, Stygall JA, Keshtgar MR, Newman SP. Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of the literature. Soc Sci Med 2006; 63:151e164. 7. Gallup International Millennium Survey, 2000. Available from. http://www.gallupinternational.com/ survey15.htm. Accessed May 14, 2004.
Authors’ Response To the Editor: We are grateful for the letter from Professor Persaud and this opportunity to respond. We agree that the findings of much of the existing, largely American-based, research concerning ‘religion and health’ cannot be generalized to other cultural and religious settings,1 and that there is a need for qualitative research to clarify the issues at play2 as we come to terms with the core existential issues that frame our lives (death, meaninglessness, loss of external structure, aloneness3).
physical function. Various questionnaires exist, but an evaluation of these for use among palliative patients is needed. Line Oldervoll, PhD Department of Cancer Research and Molecular Medicine The Norwegian University of Technology and Science Trondheim, Norway doi:10.1016/j.jpainsymman.2006.10.002
References 1. Oldervoll LM, Loge JH, Paltiel H, et al. The effect of a physical exercise program in palliative care: a phase II study. J Pain Symptom Manage 2006; 31(5):421e430. 2. Oldervoll LM, Loge JH, Paltiel H, et al. Are palliative cancer patients willing and able to participate in a physical exercise program? Palliat Support Care 2005;3:281e287. 3. Segal RJ, Reid RD, Courneya KS, et al. Resistance exercise in men receiving androgen deprivation therapy for prostate cancer. J Clin Oncol 2003;21: 1653e1659. 4. Pinto BM, Frierson GM, Rabin C, et al. Home-based physical activity intervention for breast cancer patients. J Clin Oncol 2005;23:3577e3587. 5. Simmonds MJ. Physical function in patients with cancer: psychometric characteristics and clinical usefulness of a physical performance test battery. J Pain Symptom Manage 2002;24:404e414.
Re: Caregivers and Existential and Spiritual Distress To the Editor: While Boston and Mount’s1 recent thoughtful paper usefully seeks to explore caregivers’ perspectives on existential and spiritual distress in palliative care, there appeared an implicit assumption that these themes will almost always necessarily be present during these predicaments, and, therefore, an exploration of them needs to be actively encouraged by caregivers. Furthermore, there seemed to be a further supposition that spiritual concerns would always be usefully focused on at this time. This perspective is underlined by statements in their paper such as ‘‘Spiritual/existential concerns are important determinants of enhanced quality of
Letters
Vol. 32 No. 6 December 2006
life, the primary goal of palliative care.’’1 The authors support this implicit conjecture by arguing that patients who experience a deep sense of meaning and purpose in life may be better able to cope with difficult symptoms and live longer. This perspective reflects a burgeoning emphasis on spirituality in thinking about health. The new convention appears to be that it is the neglect of spirituality that is frequently blamed for the limits to modern scientific medicine in improving well-being of populations.2 Spirituality is gradually being elevated in the academic literature in an overall conception of well-being and coping skills, almost, it seems, as an attempt to compensate for medicine’s scientific orientation. The evidence, however, of the benefits of spirituality in terms of mental health appear more mixed than Boston and Mount’s paper appears to acknowledge, plus there are real difficulties in integrating spirituality into clinical practice and scientific research, which this paper, along with much current literature, appears to side step. There have been, however, some recent fascinating advances in the scientific literature on this front. For example, in a recent study, spirituality was associated with lower depressive symptoms in a population of the HIV-positive, and also in a rare attempt at biological integration, decreased 24-hour urinary-free cortisol output.3 Religious involvement also has been associated with lower mortality rates in a variety of populations4 and enhanced immunological function appears to mediate this relationship.5 However, it is also important to note that when it comes to investigations of how spirituality assists with coping in fields like cancer, the evidence is decidedly mixed.6 For example, a recent meta-analysis of coping with cancer found that in seven studies there was some evidence for the beneficial effect of religious coping, but one of these also found religious coping to be detrimental in a subsample of their population. A further three studies found religious coping to be harmful and seven found nonsignificant results.6 Much of this literature is produced by authors whose base is the United States and there may be a North American cultural bias in seeing spirituality as lying so close to the heart of psychological well-being, which would stand in strong contrast to views of mental health from
Vol. 32 No. 6 December 2006
elsewhere in the world, particularly perhaps Europe. This is a particularly vital issue for carers from elsewhere in the world. Recent surveys have established that while 83% of Americans felt God was important in their lives, this only applied to 49% of people in Europe.7 In the United States, 47% attend a place of worship regularly and 91% believe in God/ higher power, while in the UK, only 12% of individuals attend church on a regular basis and a mere 21% have no doubts about the existence of God.6 Beyond the not insignificant problem of cultural bias in seeing spirituality as lying at the core of mental well-being, there is an additional issue that scientific investigation of spirituality is leading to the view that spiritual coping may be more complex and certainly not unidimensional.6 For example, the avowedly religious might differ markedly in the security of their relationship with a deity, plus may have different conceptions of its character; negative religious coping appears linked with a distant and punishing God.6 Within a spiritual outlook, there may or may not be helpful or unhelpful religious rituals, selfreliance as opposed to giving over control to God, and positive or negative aspects of praying for a miracle. We, therefore, need more research investigating what aspects of spirituality are associated with better mental health, rather than assuming that spirituality is in itself an inherently positive contribution to self-transcendence and, therefore, positive coping. The reality is that many nonspiritual people from all over the world exhibit excellent mental health. So to assume spirituality is always to be encouraged if carers want to improve the well-being of populations could be considered insulting to this not insignificant group. It is also possible that spiritual orientation could even be counterproductive in certain coping scenarios, including facing a terminal disease. Caregivers might particularly struggle with how to assist when they also observe suffering that appears to be exacerbated by a spiritual outlook. Focus group research, such as that produced by Boston and Mount, is key to helping us prepare hypotheses to be tested by more quantitative methods. But it should perhaps be more open to the possibility that spirituality is not always necessarily helpful. Surely the best coping of all is flexible and
Letters
517
responsive to the demands of patient and their particular predicament. Raj Persaud, FRCPsych Bethlem Royal and Maudsley NHS Hospitals Trust London, United Kingdom doi:10.1016/j.jpainsymman.2006.07.004
References 1. Boston PH, Mount BM. The caregiver’s perspective on existential and spiritual distress in palliative care. J Pain Symptom Manage 2006;32(1):13e26. 2. Cloninger RC. The science of well-being: an integrated approach to mental health and its disorders. World Psychiatry 2006;5:71e76. 3. Carrico AW, Ironson G, Antoni MH, et al. A path model of the effects of spirituality on depressive symptoms and 24-h urinary-free cortisol in HIV-positive persons. J Psychosom Res 2006;61:51e58. 4. McCullough ME, Hoyt WT, Larson DB, Koenig HG, Thoresen CE. Religious involvement and mortality: a meta-analytic review. Health Psychol 2000;19:211e222. 5. Lutgendorf SK, Russell D, Ullrich P, Harris TB, Wallace R. Religious participation, interleukin-6, and mortality in older adults. Health Psychol 2004; 23:465e475. 6. Thune´-Boyle IC, Stygall JA, Keshtgar MR, Newman SP. Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of the literature. Soc Sci Med 2006; 63:151e164. 7. Gallup International Millennium Survey, 2000. Available from. http://www.gallupinternational.com/ survey15.htm. Accessed May 14, 2004.
Authors’ Response To the Editor: We are grateful for the letter from Professor Persaud and this opportunity to respond. We agree that the findings of much of the existing, largely American-based, research concerning ‘religion and health’ cannot be generalized to other cultural and religious settings,1 and that there is a need for qualitative research to clarify the issues at play2 as we come to terms with the core existential issues that frame our lives (death, meaninglessness, loss of external structure, aloneness3).