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For professionals:

Selected Bibliography

***Bree Collaborative (2014).  End-of-life Care Recommendations.  Access from:


***Byock I. (2013) The best care possible.  NY: Avery.


***Institute of Medicine (2014). Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.


Bisschoff KE, Sudore R, Maio Y et al. Advance care plassning and the quality of end-of-life care in older adults.  Journal of the American Geriatrics  Society.   2013;61(2):209-214.


Halpern SD, Lowenstein G, Volpp KG, et al. Default options in advance directives influence how patients set goals for end-of-life care.  Health Affairs (Millwood). 2013 Feb;32(2): 408-417.


Critique of many advance care planning protocols


Balch Associates.  Assessment of Last Acts Program provides recommendations for future

findings.  (Robert Wood Johnson Foundation report)



Butler M, Ratner E, McGreedy E, Shippee N, Kane RL.  Decision aids for advance cae planning: An overview of the state of the science.  Ann Intern Med. 2014;161:408-418.


Consumer Perceptions and Needs REgarding Advanced Illness Care:  Are We Listening?


Elwyn G, OCNonnor AM, Bennett C, Newcomb RG, Politi M, et al. Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi).  PLoS One. 2009;4e705. [PMID: 19259269].


Durand M-A, Witt J, Joseph-Williams N, Newcombe RG, Politi MC et al. Minimum standards for the certification of patient decision support interventions: Feasibility and application. Patient Education and Counseling.  2015;98:462-468.


Fagerlin A, Schneide C/ Enough: the failure of the living will.  Hastings Center Report.  2004;24:3--34.


Oken, M.M., Creech, R.H., Tormey, D.C., Horton, J., Davis, T.E., McFadden, E.T., Carbone, P.P.: Toxicity And Response Criteria Of The Eastern Cooperative Oncology Group. Am J Clin Oncol 5:649-655, 1982.


Schulz et al. Caregiving as a risk factor for mortality: the Caregiver

Health Effects Study. JAMA. 1999 Dec 15;282(23):2215-9.


Shapiro S. Advance directive: Tjhe Elusive goal of having the last word.  NAELA (National Association of Elder Care Attorneys) Journal. 2012;Vii(2): 205-232


Articles on patient-physicial discussion of end of life care  


Bernacki RE, Block SD.  Communication about serious illness care goals:  A review and syntgesis of best practices.  JAMA Internal Medicine.  2014; 174(12):1994-2003.


Tanco K, Rhondall W, Perez-Cruz P et al. Patient perception of physician compassion after a more optimistic vs less optimistic message: A randomized clinical trial.  JAMA Oncology. 2014: doi:10.1001/jamaonco.2014.297.



Articles on meaning in life


Antonovsky  A. (1979) Health, stress, and coping.   San Francisco: Jossey-Bass.


Frankl VE. (1992).  Man’s search for meaning.  Boston: Beacon Press.


Heintzelman SJ, King LA.  Life is pretty meaningful. American Psychologist.  2014;69(6):561-574.


Hill PL, Turiano NA. Purpose in life as a predictor of  mortality across adulthood.

Psychological Science.  2014;25(7):1482-1486.



Articles on the permanent vegetative state


Holland S, Kitzinger, Kitinger J. Death, treatment decisions and the permanent vegetative state: evidence from families and experts. Medical Health Care Philos 2014; 17(3):413-423.


Kitzinger C, Kitzinger J. Withholding artificial nutrition and hydration from minimally conscious and vegetative patients: family perspecti ves.  J Med Ethics 2015;41:157-160.


Monti MM, Laureys S, Owen AM. The vegetative state.  The BMJ 2010;341:c3765


Skold A, Lesandarini J, Gorbatkin S. Ethics and health policy of dialyzing a patient with persistent vegetative state,  Clin J Am Soc Nephrol 2014 Feb 7; 9(2); 366-370.


Srivas,  Chennu,  et al. (2015). Spectral Signatures of Reorganized Brain Networks in
Disorders of Consciousness.  PLoS Computational Biology



Articles on the cost of medical care


Bai G, Anderson GF. Extreme markup: the fifty US hospitals with the highest charge-to-cost

ratios. Health Aff (Millwood) 2015;34:922-28.


Bermacki RE, Block SD.  Communication about serious illness care goals: A review and synthesis of best practices.  JAMA Internal Medicine.  2014;174(12):1994-2003


Halpern SD, Emanuel EJ. Advance directives and cost savings: Greater clarity and perpetual confusion.  Archives of Internal Medicine.  2012; 772(3):264-268


Huynh TN, Kleerup MD, Wiley JF, et al. The frequency and cost of treatment prrceived to be futile in critical care.  JAMA Internal Medicine.   2013; 173(20): 1887-1894


Kelley A S , McGarry K, Fahle S, Marshall S M, Du Q, & Skinner J S. (2012). Out-of-pocket spending in the last five years of life.  Journal of General Internal Medicine, DOI: 101007/s11606-012-1299x.


Nakhoda A. End-of-life care and the Medicare hospice benefit: The high cost of end-of-life care.  J Financial Service Professionals.  2010; March:24-28.


Thompson T, Benz J, Agiesta J et al. (2012) Long0term care perceptions, experiences, and attitudes among Americans 40 and older.  The Associated Press-NORC Center for Public Affairs Research.  Accessed May 24, 2015 from:


Wennberg J, Fisher E, Goodman D et al. Tracking the care of patients with severe chronic illness: The Dartmouth Atlas of Health Care.  The Dartmouth Institute. April 2008.

Zhang B, Wright AA, Huskamp HA. Health care costs in the last week of life.  Archives of Internal Medicine.  2009; 109(2): 480-488.


Zang B, Wright AA, Huskamp HA et al. Health care costs in the last week of life associated with end-of-life conversations.  Archives of Internal Medicine. 2009;169(5):480-488.


Article that discuss physician-patient discussion of cost


Schmidt H, Emanuel EJ. Lowering medical costs through the sharing of savings by physicians and patients: Inclusive shared savings.  JAMA Internal Medicne. 2014;147(12): 2009-2015.


Articles on surrogacy


Mendoza JL, Burns CM. "Who will talk for me?" Next of kin is not necesasaily the preferred substitute decision maker: Findings from an Austraoian intensive care unit.  Palliate Medicine. 2015;29(4):391-392


Mirzaei K, Milanifar A, Asghari F.Patients' perspective of the substitute decision maker: who makes better decisions? Journal of Medical Ethics. 2011; 37:523-525.


Article on the POLST


Bomba PA, Kemp M, Blsck JS. POLST: An improvement over traditional advance directives.  Cleveland Clinic Journal of Medicine.  2012; 79(2): 457-464


Articles on the medical futilty


Bishop JP, Brothers KB, Perry JE, Ahmad A. Finite knowledge/finite power: “death panels” and the limits of medicine.  American Journal of Bioethics. 2010; 10(1):W7-W9.


Cantor NL. No ethical or legal imperative to provide life support to a permanently unaware patient.  American Journal of Bioethics.  2010; 10(3):58-59.


McGee DC, Weinacker AB, Raffin TA. The patient’s response to medical futility.  Archives of Internal Medicine.  2000; 160:1563-1564.


Rodriguez KL, Young AJ. Perceptions of patients on the utility or futility of end-of-life treatment.  Journal of Medical Ethics.  2006;32:444-449.


Truog RD, White DB. Futile treatments in intensive care units.  JAMA Internal Medicine.  2013;doi.10.1001/jamainternalmed.2013.7098.


Winkler EC, Hiddemann W, Marckmann G. Evaluation a patients’ request for life-prolonging treatment: an ethical framework.  Journal of Medical Ethics. 2012;38:647-651.



Articles on In-Home Health Care


Adelman R, Timanov LL, Delgado D, DionS, Lachs MS. Caretiver burden: A clinical review.  JAMA. 2004;311(10):1052-1059.


Beavans M, Sternberg EM. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients.  JAMA. 2012; 307(4):393-403.


Boling PE, Chandekar RV, Hungate B, et al.  Improving outcomes and lowering costs by applying advance models of in-home care.  Cleveland Clinic Journal of Medicine.  2011;80(1):e-S87-e-S14.


Chaudhry SI, Mattera JA, Curtis JP. Telemonitoring in patients with heart failure.  New England Journal of Medicine. 2010; 363:2301-2309.


Dukhovnov D, Zagheni E. Who takes care of whom in the United States? Time transfers by age and sex. Population and Development Review. 2015;41(2):183-206.  Accessed June 19, 2015 from:


Naylor MD, Brooten DA, Campbell RL, et al. Transitional care of older adults hospitalized with hearth failure: a randomized, controlled trial.  Journal of the American Geriatrics Society.  2004;52:675-684.


Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life.  "They don't know what they don't know.  JAMA. 2012;291(4):483-491.


Rhee YJ, Degenholtz HB, Sasso ATL, Emanuel LL. Estimating the quality and economic value of family caregiving for community-dwelling older persons in the last year of life.  Journal of the Amereican Geriatrics Society. 2009; 57:1654-1659.


Wieland D, Boland R, Baskins J, Kinosian B. Five-year survival in a Program of All-inclusive Care for Elderly compared with alternative institutinoal and home- and community-based care.  Journal of Gerontology. 2010;65:721-726.



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