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Palliative Care in Dementia 1986–2016: Progress and Remaining Challenges
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Letters to the Editor / JAMDA 18 (2017) 182e191
2. Ausserhofer D, Deschodt M, De Geest S, et al. “There’s no place like home”: A scoping review on the impact of homelike residential care models on resident-, family-, and staff-related outcomes. J Am Med Dir Assoc 2016;17: 685e693. 3. Miliani K, Migueres B, Verjat-Trannoy D, et al. the French Prevalence Survey Study Group. National point prevalence survey of healthcare-associated infections and antimicrobial use in French home care settings, May to June 2012. Euro Surveill 2015;20. 4. Centers for Disease Control and Prevention. National and state healthcare associated infections. Progress report. Available at: https://www.cdc.gov/HAI/ pdfs/progress-report/hai-progress-report.pdf; 2016. Accessed August 26, 2016. 5. Epstein L, Stone ND, LaPlace L, et al. Comparison of data collection for healthcare-associated infection surveillance in nursing homes. Infect Control Hosp Epidemiol 2016:1e6. Published online. 6. Magiorakos AP, Srinivasan A, Carey RB, et al. Multidrug-resistant, extensively drug-resistant and pandrug-resistant bacteria: an international expert proposal for interim standard definitions for acquired resistance. Clin Microbiol Infect 2012;18:268e281. 7. Transatlantic Taskforce on Antimicrobial Resistance. Progress report May 2014, Recommendations for future collaboration between the US and EU. Available at: http://www.cdc.gov/drugresistance/pdf/tatfar-progress_report_2014.pdf. Accessed August 26, 2016.
Maria Serena Gallone, MD Vittoria Infantino, MD Silvio Tafuri, MD, PhD Department of Biomedical Science and Human Oncology University of Bari Aldo Moro Bari, Italy http://dx.doi.org/10.1016/j.jamda.2016.11.006
Palliative Care in Dementia 1986e2016: Progress and Remaining Challenges To the Editor: Palliative or hospice care research and practice for people with advanced dementia have made great strides since in 1986, JAMA published on the development and evaluation of the first dementia-specific hospice program.1 This program, in a Bedford, Massachusetts, nursing home, was innovative in its goal to maintain comfort without striving for maximal survival time. Compared with usual care, it saved health care resources and improved comfort. Thirty years later, research and hospice programs have expanded, and access to palliative care for people with dementia in Western countries has improved. We reflect on how and why it started, celebrate achievements, and consider remaining challenges. Development of the Bedford program was partly motivated by a treatment dilemma eloquently described by Dr Hilfiker in 1983 (Box 1).2 Few data existed at the time to guide his choices. The trajectory of advanced dementia was not understood. The causes of death had not been adequately described. Multidisciplinary palliative or hospice care was being initiated for patients with cancer, but not for those with other incurable diseases.
J.T.v.d.S. is supported by a career award from the Netherlands Organisation for Scientific Research (NWO; Innovational Research Incentives Scheme) Vidi grant number 91711339. The funding organization had no role in the preparation or review of the manuscript or the decision to submit the manuscript for publication.
At Bedford, in the late 1980s, Hilfiker’s dilemma was resolved, because every patient had a clear plan of care. The multidisciplinary team and the family, in an “atmosphere of mutual empowerment” decided on 1 of 5 levels of care for each patient. Level 1 provided all interventions, whereas subsequent levels of care eliminated interventions in a stepwise fashion beginning with resuscitation, then hospitalization, antibiotics, and tube feeding. Symptom management included liberal use of antipyretics, analgesics, and oxygen. The Bedford program, despite its small scale, included most of the elements recently defined as optimal palliative care in dementia by a 23-country expert panel and the European Association for Palliative Care.3 For example, both emphasized palliative care as being multidisciplinary, including spiritual care professionals, family support, shared decision making, staff training and support, and the Bedford program included an early version of advance care planning. Do the 5 levels of decreasing treatment intensity still make sense? The first 2 interventions that were eliminated, resuscitation and hospitalization, are of questionable benefit, risk substantial undesirable side effects, and usually occur in the setting of acute illnesses, emphasizing the necessity of advance care planning. For the next 2 interventions, antibiotics and tube feeding, which were reversed later, there is some evidence to guide decision making, due to an explosion of research especially since the turn of the century. A recent study suggests that as the quality of dementia palliative care improves, antibiotics for pneumonia may not provide additional comfort.4 Research on tube feeding has shown a more consistent lack of benefit, prompting recommendations by many professional organizations to avoid its use. Therefore, we can celebrate that in the United States, the prevalence of tube feeding in advanced dementia declined from 11.7% in 2000 to 5.7% in 2014.5 However, cultural sensitivities play a significant role in decisions around the administration of artificial food and fluids.3,6 Decisions around antibiotic treatment are also difficult, especially for pneumonia, because we cannot predict well whether we are prolonging life (by a few months) or prolonging the dying process (a few days).7 Hydration was not considered in the Bedford program but, rather than antibiotics, may be the more important life-prolonging factor in pneumonia treatment.7,8 Rehydration, though, may cause discomfort when dying. Therefore, given the sensitivities and uncertainties around these decisions, determining goals of care and further research are still of utmost importance. Moreover, research has focused on advanced dementia as a terminal illness demonstrated by frequent infections and food and fluid intake problems,9 but we now know that these also frequently occur in nursing home residents with less advanced dementia.10 Treatment dilemmas may be even greater, as there is no full consensus on palliative care in less advanced stages.3 Finally, modifying staff attitudes and education about the hospice approach in dementia were challenging and ongoing elements of the Bedford program, but there is still a widespread need for more education. Representative samples of physicians who care for people with dementia at the end of life have in Northern Ireland and The Netherlands rated lack of education of professional teams and lack of awareness of the general public as among the most important barriers to providing palliative care in dementia.11 Educational and policy challenges are significant and require increased attention. Palliative care may be included in more national dementia strategies.12 Educating the general public about palliative care in dementia and treatment effects will help patients and proxies express their fears and
Letters to the Editor / JAMDA 18 (2017) 182e191
Box 1. Dementia, a Treatment Dilemma.2 Dr. Hilfiker was called in the middle of the night for a patient with advanced dementia who had developed a fever. On examination, he diagnosed pneumonia, and then had a sobering dilemma. Having known the patient for many years, even before the onset of dementia, Hilfiker’s “human sympathies” told him that the patient had a “desire to die.” His bleary-eyed choice was to either send her to a hospital for aggressive treatments, “toxic antibiotics,” intravenous hydration, and more “heroics” that would potentially cure her pneumonia but cause discomfort, or treat her in the nursing home with its limited resources. He decided to forgo transfer to the hospital, providing care that would be more in keeping with her wishes. Hilfiker reflected that physicians made these kinds of decisions daily with neither appropriate training, nor the resources to make these decisions alone. The article by Hilfiker2 motivated the development of dementia-specific hospice care (L. Volicer, personal communication, 2016).
wishes, which may help to establish advance care plans and diminish future treatment dilemmas. References 1. Volicer L, Rheaume Y, Brown J, et al. Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. JAMA 1986;256: 2210e2213. 2. Hilfiker D. Sounding board. Allowing the debilitated to die. Facing our ethical choices. N Engl J Med 1983;308:716e719. 3. van der Steen JT, Radbruch L, Hertogh CM, et al. European Association for Palliative Care (EAPC). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014;28:197e209. 4. van der Maaden T, van der Steen JT, de Vet HC, et al. Prospective observations of discomfort, pain, and dyspnea in nursing home residents with dementia and pneumonia. J Am Med Dir Assoc 2016;17:128e135. 5. Mitchell SL, Mor V, Gozalo PL, et al. Tube feeding in US nursing home residents with advanced dementia, 2000e2014. JAMA 2016;316:769e770. 6. van der Steen JT, Hertogh CM, de Graas T, et al. Translation and crosscultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation. J Med Ethics 2013;39: 104e109. 7. van der Steen JT, Lane P, Kowall NW, et al. Antibiotics and mortality in patients with lower respiratory infection and advanced dementia. J Am Med Dir Assoc 2012;13:156e161.
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8. Szafara KL, Kruse RL, Mehr DR, et al. Mortality following nursing homeacquired lower respiratory infection: LRI severity, antibiotic treatment, and water intake. J Am Med Dir Assoc 2012;13:376e383. 9. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med 2009;361:1529e1538. 10. Hendriks SA, Smalbrugge M, van Gageldonk-Lafeber AB, et al. Pneumonia, intake problems, and survival among nursing home residents with variable stages of dementia in the Netherlands: Results from a prospective observational study. Alzheimer Dis Assoc Disord 2016 [published online ahead of print]. 11. Brazil K, Galway K, Carter G, van der Steen JT. Providing optimal palliative care for persons living with dementia: a comparison of physician perceptions in the Netherlands and the United Kingdom. J Palliat Med 2016 [published online ahead of print]. 12. Nakanishi M, Nakashima T, Shindo Y, et al. An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. Int Psychogeriatr 2015;27: 1551e1561.
Jenny T. van der Steen, PhD Leiden University Medical Center Department of Public Health and Primary Care Leiden, The Netherlands Radboud university medical center Department of Primary and Community Care Nijmegen, The Netherlands Shelley Sternberg, MD Maccabi Healthcare Services Department of Public Health Tel Aviv, Israel Israel Ministry of Health Jerusalem, Israel Ladislav Volicer, MD, PhD University of South Florida School of Aging Studies Tampa, FL Charles University 3rd Medical Faculty Prague, Czech Republic University of Western Sydney School of Nursing and Midwifery Sydney, Australia http://dx.doi.org/10.1016/j.jamda.2016.11.009
Letters to the Editor / JAMDA 18 (2017) 182e191
2. Ausserhofer D, Deschodt M, De Geest S, et al. “There’s no place like home”: A scoping review on the impact of homelike residential care models on resident-, family-, and staff-related outcomes. J Am Med Dir Assoc 2016;17: 685e693. 3. Miliani K, Migueres B, Verjat-Trannoy D, et al. the French Prevalence Survey Study Group. National point prevalence survey of healthcare-associated infections and antimicrobial use in French home care settings, May to June 2012. Euro Surveill 2015;20. 4. Centers for Disease Control and Prevention. National and state healthcare associated infections. Progress report. Available at: https://www.cdc.gov/HAI/ pdfs/progress-report/hai-progress-report.pdf; 2016. Accessed August 26, 2016. 5. Epstein L, Stone ND, LaPlace L, et al. Comparison of data collection for healthcare-associated infection surveillance in nursing homes. Infect Control Hosp Epidemiol 2016:1e6. Published online. 6. Magiorakos AP, Srinivasan A, Carey RB, et al. Multidrug-resistant, extensively drug-resistant and pandrug-resistant bacteria: an international expert proposal for interim standard definitions for acquired resistance. Clin Microbiol Infect 2012;18:268e281. 7. Transatlantic Taskforce on Antimicrobial Resistance. Progress report May 2014, Recommendations for future collaboration between the US and EU. Available at: http://www.cdc.gov/drugresistance/pdf/tatfar-progress_report_2014.pdf. Accessed August 26, 2016.
Maria Serena Gallone, MD Vittoria Infantino, MD Silvio Tafuri, MD, PhD Department of Biomedical Science and Human Oncology University of Bari Aldo Moro Bari, Italy http://dx.doi.org/10.1016/j.jamda.2016.11.006
Palliative Care in Dementia 1986e2016: Progress and Remaining Challenges To the Editor: Palliative or hospice care research and practice for people with advanced dementia have made great strides since in 1986, JAMA published on the development and evaluation of the first dementia-specific hospice program.1 This program, in a Bedford, Massachusetts, nursing home, was innovative in its goal to maintain comfort without striving for maximal survival time. Compared with usual care, it saved health care resources and improved comfort. Thirty years later, research and hospice programs have expanded, and access to palliative care for people with dementia in Western countries has improved. We reflect on how and why it started, celebrate achievements, and consider remaining challenges. Development of the Bedford program was partly motivated by a treatment dilemma eloquently described by Dr Hilfiker in 1983 (Box 1).2 Few data existed at the time to guide his choices. The trajectory of advanced dementia was not understood. The causes of death had not been adequately described. Multidisciplinary palliative or hospice care was being initiated for patients with cancer, but not for those with other incurable diseases.
J.T.v.d.S. is supported by a career award from the Netherlands Organisation for Scientific Research (NWO; Innovational Research Incentives Scheme) Vidi grant number 91711339. The funding organization had no role in the preparation or review of the manuscript or the decision to submit the manuscript for publication.
At Bedford, in the late 1980s, Hilfiker’s dilemma was resolved, because every patient had a clear plan of care. The multidisciplinary team and the family, in an “atmosphere of mutual empowerment” decided on 1 of 5 levels of care for each patient. Level 1 provided all interventions, whereas subsequent levels of care eliminated interventions in a stepwise fashion beginning with resuscitation, then hospitalization, antibiotics, and tube feeding. Symptom management included liberal use of antipyretics, analgesics, and oxygen. The Bedford program, despite its small scale, included most of the elements recently defined as optimal palliative care in dementia by a 23-country expert panel and the European Association for Palliative Care.3 For example, both emphasized palliative care as being multidisciplinary, including spiritual care professionals, family support, shared decision making, staff training and support, and the Bedford program included an early version of advance care planning. Do the 5 levels of decreasing treatment intensity still make sense? The first 2 interventions that were eliminated, resuscitation and hospitalization, are of questionable benefit, risk substantial undesirable side effects, and usually occur in the setting of acute illnesses, emphasizing the necessity of advance care planning. For the next 2 interventions, antibiotics and tube feeding, which were reversed later, there is some evidence to guide decision making, due to an explosion of research especially since the turn of the century. A recent study suggests that as the quality of dementia palliative care improves, antibiotics for pneumonia may not provide additional comfort.4 Research on tube feeding has shown a more consistent lack of benefit, prompting recommendations by many professional organizations to avoid its use. Therefore, we can celebrate that in the United States, the prevalence of tube feeding in advanced dementia declined from 11.7% in 2000 to 5.7% in 2014.5 However, cultural sensitivities play a significant role in decisions around the administration of artificial food and fluids.3,6 Decisions around antibiotic treatment are also difficult, especially for pneumonia, because we cannot predict well whether we are prolonging life (by a few months) or prolonging the dying process (a few days).7 Hydration was not considered in the Bedford program but, rather than antibiotics, may be the more important life-prolonging factor in pneumonia treatment.7,8 Rehydration, though, may cause discomfort when dying. Therefore, given the sensitivities and uncertainties around these decisions, determining goals of care and further research are still of utmost importance. Moreover, research has focused on advanced dementia as a terminal illness demonstrated by frequent infections and food and fluid intake problems,9 but we now know that these also frequently occur in nursing home residents with less advanced dementia.10 Treatment dilemmas may be even greater, as there is no full consensus on palliative care in less advanced stages.3 Finally, modifying staff attitudes and education about the hospice approach in dementia were challenging and ongoing elements of the Bedford program, but there is still a widespread need for more education. Representative samples of physicians who care for people with dementia at the end of life have in Northern Ireland and The Netherlands rated lack of education of professional teams and lack of awareness of the general public as among the most important barriers to providing palliative care in dementia.11 Educational and policy challenges are significant and require increased attention. Palliative care may be included in more national dementia strategies.12 Educating the general public about palliative care in dementia and treatment effects will help patients and proxies express their fears and
Letters to the Editor / JAMDA 18 (2017) 182e191
Box 1. Dementia, a Treatment Dilemma.2 Dr. Hilfiker was called in the middle of the night for a patient with advanced dementia who had developed a fever. On examination, he diagnosed pneumonia, and then had a sobering dilemma. Having known the patient for many years, even before the onset of dementia, Hilfiker’s “human sympathies” told him that the patient had a “desire to die.” His bleary-eyed choice was to either send her to a hospital for aggressive treatments, “toxic antibiotics,” intravenous hydration, and more “heroics” that would potentially cure her pneumonia but cause discomfort, or treat her in the nursing home with its limited resources. He decided to forgo transfer to the hospital, providing care that would be more in keeping with her wishes. Hilfiker reflected that physicians made these kinds of decisions daily with neither appropriate training, nor the resources to make these decisions alone. The article by Hilfiker2 motivated the development of dementia-specific hospice care (L. Volicer, personal communication, 2016).
wishes, which may help to establish advance care plans and diminish future treatment dilemmas. References 1. Volicer L, Rheaume Y, Brown J, et al. Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. JAMA 1986;256: 2210e2213. 2. Hilfiker D. Sounding board. Allowing the debilitated to die. Facing our ethical choices. N Engl J Med 1983;308:716e719. 3. van der Steen JT, Radbruch L, Hertogh CM, et al. European Association for Palliative Care (EAPC). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014;28:197e209. 4. van der Maaden T, van der Steen JT, de Vet HC, et al. Prospective observations of discomfort, pain, and dyspnea in nursing home residents with dementia and pneumonia. J Am Med Dir Assoc 2016;17:128e135. 5. Mitchell SL, Mor V, Gozalo PL, et al. Tube feeding in US nursing home residents with advanced dementia, 2000e2014. JAMA 2016;316:769e770. 6. van der Steen JT, Hertogh CM, de Graas T, et al. Translation and crosscultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation. J Med Ethics 2013;39: 104e109. 7. van der Steen JT, Lane P, Kowall NW, et al. Antibiotics and mortality in patients with lower respiratory infection and advanced dementia. J Am Med Dir Assoc 2012;13:156e161.
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8. Szafara KL, Kruse RL, Mehr DR, et al. Mortality following nursing homeacquired lower respiratory infection: LRI severity, antibiotic treatment, and water intake. J Am Med Dir Assoc 2012;13:376e383. 9. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med 2009;361:1529e1538. 10. Hendriks SA, Smalbrugge M, van Gageldonk-Lafeber AB, et al. Pneumonia, intake problems, and survival among nursing home residents with variable stages of dementia in the Netherlands: Results from a prospective observational study. Alzheimer Dis Assoc Disord 2016 [published online ahead of print]. 11. Brazil K, Galway K, Carter G, van der Steen JT. Providing optimal palliative care for persons living with dementia: a comparison of physician perceptions in the Netherlands and the United Kingdom. J Palliat Med 2016 [published online ahead of print]. 12. Nakanishi M, Nakashima T, Shindo Y, et al. An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. Int Psychogeriatr 2015;27: 1551e1561.
Jenny T. van der Steen, PhD Leiden University Medical Center Department of Public Health and Primary Care Leiden, The Netherlands Radboud university medical center Department of Primary and Community Care Nijmegen, The Netherlands Shelley Sternberg, MD Maccabi Healthcare Services Department of Public Health Tel Aviv, Israel Israel Ministry of Health Jerusalem, Israel Ladislav Volicer, MD, PhD University of South Florida School of Aging Studies Tampa, FL Charles University 3rd Medical Faculty Prague, Czech Republic University of Western Sydney School of Nursing and Midwifery Sydney, Australia http://dx.doi.org/10.1016/j.jamda.2016.11.009