Skip to main content

End-of-Life Care

  • Chapter
  • First Online:
Chronic Illness Care

Abstract

Most people now die from chronic diseases. Attitudes and practices toward care as people near the end of life have changed dramatically over the past decades. Public advocacy and interest in self-determination have led to laws and policies that allow patients to indicate their wishes regarding end-of-life care. The medical community has responded, and end-of-life care has matured and been professionalized with the emphasis on compassionate and timely care. Determining when it is time to shift from curative efforts to an approach that focuses on comfort and quality of life is often not clear, and palliative care has evolved to include symptom relief while patients are still receiving curative treatment, allowing for a gradual transition in the focus of care. New quality metrics set a standard of excellence in practicing end-of-life care. Financing of end-of-life care continues to evolve. Populations such as children, patients with dementia, or those without the cognitive ability to make decisions require special consideration. Future initiatives in end-of-life care will focus on workforce preparedness, alternative financing models, innovations in electronic medical records, team-based care, and support for the healthcare work force who serve the growing population of people who die from chronic diseases.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 189.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 249.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  1. Lynn J, Adamson D. Living well at the end of life: adapting health care to serious chronic illness in old age. RAND Corporation; 2003 [cited 2021 Nov 6]. Available from: https://www.rand.org/pubs/white_papers/WP137.html.

  2. Brennan F. Palliative care as an international human right. J Pain Symptom Manag. 2007;33(5):494–9.

    Article  Google Scholar 

  3. Meier DE, Isaacs SL, Hughes R. Palliative care: transforming the care of serious illness. John Wiley & Sons; 2011.

    Google Scholar 

  4. Kűbler-Ross E. On death and dying. London: Tavistock Publications; 1969.

    Google Scholar 

  5. Accreditation Council for Graduate Medical Education (ACGME). Program requirements for graduate medical education in hospice and palliative medicine. 2020. Available from: https://www.acgme.org/globalassets/PFAssets/ProgramRequirements/540_HospicePalliativeMedicine_2020.pdf?ver=2020-06-29-164052-453&ver=2020-06-29-164052-453.

  6. Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med. 2015;373(8):747–55.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  7. Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, et al. Redefining palliative care—a new consensus-based definition. J Pain Symptom Manag. 2020;60(4):754–64.

    Article  Google Scholar 

  8. National Hospice and Palliative Care Organization. 2020 Edition: hospice facts and figures. Alexandria, VA: National Hospice and Palliative Care Organization; 2020. Available from: www.nhpco.org/factsfigures.

    Google Scholar 

  9. Zimmermann C, Riechelmann R, Krzyzanowska M, Rodin G, Tannock I. Effectiveness of specialized palliative care: a systematic review. JAMA. 2008;299(14):1698–709.

    Article  CAS  PubMed  Google Scholar 

  10. Teno JM, Gozalo P, Trivedi AN, Bunker J, Lima J, Ogarek J, et al. Site of death, place of care, and health care transitions among US Medicare beneficiaries, 2000-2015. JAMA. 2018;320(3):264–71.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Teno JM, Casarett D, Spence C, Connor S. It is “too late” or is it? Bereaved family member perceptions of hospice referral when their family member was on hospice for seven days or less. J Pain Symptom Manag. 2012;43(4):732–8.

    Article  Google Scholar 

  12. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–11.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Schofield P, Carey M, Love A, Nehill C, Wein S. “Would you like to talk about your future treatment options”? Discussing the transition from curative cancer treatment to palliative care. Palliat Med. 2006;20(4):397–406.

    Article  PubMed  Google Scholar 

  14. Jayes RL, Arnold RM, Fromme EK. Does this dementia patient meet the prognosis eligibility requirements for hospice enrollment? J Pain Symptom Manag. 2012;44(5):750–6.

    Article  Google Scholar 

  15. Mitchell SL, Miller SC, Teno JM, Kiely DK, Davis RB, Shaffer ML. Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA. 2010;304(17):1929–35.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  16. Mueller C, Ballard C, Corbett A, Aarsland D. The prognosis of dementia with Lewy bodies. Lancet Neurol. 2017;16(5):390–8.

    Article  PubMed  Google Scholar 

  17. Harris PS, Stalam T, Ache KA, Harrold JE, Craig T, Teno J, et al. Can hospices predict which patients will die within six months? J Palliat Med. 2014;17(8):894–8.

    Article  PubMed  PubMed Central  Google Scholar 

  18. National Hospice and Palliative Care Organization. NHPCO facts and figures: pediatric palliative and hospice care in America. 2014. Available from: www.nhpco.org/factsfigures.

  19. Luth EA, Russell DJ, Xu JC, Lauder B, Ryvicker MB, Dignam RR, et al. Survival in hospice patients with dementia: the effect of home hospice and nurse visits. J Am Geriatr Soc. 2021;69(6):1529–38.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Harrold J, Harris P, Green D, Craig T, Casarett DJ. Effect of the Medicare face-to-face visit requirement on hospice utilization. J Palliat Med. 2013;16(2):163–6.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Wanzer SH, Federman DD, Adelstein SJ, Cassel CK, Cassem EH, Cranford RE, et al. The physician’s responsibility toward hopelessly ill patients. A second look. N Engl J Med. 1989;320(13):844–9.

    Article  CAS  PubMed  Google Scholar 

  22. Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press; 2015 [cited 2022 Jan 17]. 638 p. Available from: https://www.nap.edu/catalog/18748/dying-in-america-improving-quality-and-honoring-individual-preferences-near.

  23. Sullivan AM, Lakoma MD, Billings JA, Peters AS, Block SD, Core PCEP, Faculty. Teaching and learning end-of-life care: evaluation of a faculty development program in palliative care. Acad Med. 2005;80(7):657–68.

    Article  PubMed  Google Scholar 

  24. Bernacki R, Hutchings M, Vick J, Smith G, Paladino J, Lipsitz S, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open. 2015;5(10):e009032.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Emanuel EJ, Emanuel LL. Four models of the physician-patient relationship. JAMA. 1992;267(16):2221–6.

    Article  CAS  PubMed  Google Scholar 

  26. Laine C, Davidoff F. Patient-centered medicine. A professional evolution. JAMA. 1996;275(2):152–6.

    Article  CAS  PubMed  Google Scholar 

  27. Quill TE, Brody H. Physician recommendations and patient autonomy: finding a balance between physician power and patient choice. Ann Intern Med. 1996;125(9):763–9.

    Article  CAS  PubMed  Google Scholar 

  28. Tomlinson T, Brody H. Futility and the ethics of resuscitation. JAMA. 1990;264(10):1276–80.

    Article  CAS  PubMed  Google Scholar 

  29. Peterson A, Karlawish J, Largent E. Supported decision making with people at the margins of autonomy. Am J Bioethics. 2021;21(11):4–18.

    Article  Google Scholar 

  30. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manag. 2017;53(5):821–832.e1.

    Article  Google Scholar 

  31. Butler M, Ratner E, McCreedy E, Shippee N, Kane RL. Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med. 2014;161(6):408–18.

    Article  PubMed  Google Scholar 

  32. Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;(4) [cited 2022 Jan 17]. Available from: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001431.pub5/full?highlightAbstract=treatment%7Cscreening%7Cdecision%7Cfor%7Cfacing%7Cscreen%7Chealth%7Cpeople%7Cpeopl%7Cpersons%7Cface%7Cfour%7Cperson%7Caids%7Cdecis%7Caid.

  33. Austin CA, Mohottige D, Sudore RL, Smith AK, Hanson LC. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med. 2015;175(7):1213–21.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Tolle SW, Teno JM. Lessons from Oregon in embracing complexity in end-of-life care. N Engl J Med. 2017;376(11):1078–82.

    Article  PubMed  Google Scholar 

  35. Grudzen CR, Buonocore P, Steinberg J, Ortiz JM, Richardson LD, AAHPM Research Committee Writing Group. Concordance of advance care plans with inpatient directives in the electronic medical record for older patients admitted from the emergency department. J Pain Symptom Manag. 2016;51(4):647–51.

    Article  Google Scholar 

  36. Hayek S, Nieva R, Corrigan F, Zhou A, Mudaliar U, Mays D, et al. End-of-life care planning: improving documentation of advance directives in the outpatient clinic using electronic medical records. J Palliat Med. 2014;17(12):1348–52.

    Article  PubMed  Google Scholar 

  37. Halpert KD, Ward K, Sloane PD. Improving advance care planning documentation using reminders to patients and physicians: a longitudinal study in primary care. Am J Hosp Palliat Care. 2022;39(1):62–7.

    Article  PubMed  Google Scholar 

  38. Truog RD, Campbell ML, Curtis JR, Haas CE, Luce JM, Rubenfeld GD, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med. 2008;36(3):953–63.

    Article  PubMed  Google Scholar 

  39. Jensen HI, Halvorsen K, Jerpseth H, Fridh I, Lind R. Practice recommendations for end-of-life care in the intensive care unit. Crit Care Nurse. 2020;40(3):14–22.

    Article  PubMed  Google Scholar 

  40. Downar J, Delaney JW, Hawryluck L, Kenny L. Guidelines for the withdrawal of life-sustaining measures. Intensive Care Med. 2016;42(6):1003–17.

    Article  PubMed  Google Scholar 

  41. McGee A. Acting to let someone die. Bioethics. 2015;29(2):74–81.

    Article  PubMed  Google Scholar 

  42. Gedge E, Giacomini M, Cook D. Withholding and withdrawing life support in critical care settings: ethical issues concerning consent. J Med Ethics. 2007;33(4):215–8.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  43. Pew Research Center. Views on end-of-life medical treatments. Pew Research Center’s Religion & Public Life Project. 2013 [cited 2022 Jan 17]. Available from: https://www.pewforum.org/2013/11/21/views-on-end-of-life-medical-treatments/.

  44. Rada AG. Spain will become the sixth country worldwide to allow euthanasia and assisted suicide. BMJ. 2021;372:n147.

    Article  PubMed  Google Scholar 

  45. Death with Dignity Acts—states that allow assisted death. Death with dignity. [cited 2022 Jan 17]. Available from: https://deathwithdignity.org/learn/death-with-dignity-acts/.

  46. Ventafridda V, Ripamonti C, De Conno F, Tamburini M, Cassileth BR. Symptom prevalence and control during cancer patients’ last days of life. J Palliat Care. 1990 Autumn;6(3):7–11.

    Article  CAS  PubMed  Google Scholar 

  47. Howland J. Questions about palliative sedation: an act of mercy or mercy killing? Ethics Medics. 2005;30(8):1–2.

    Article  PubMed  Google Scholar 

  48. Billings JA, Block SD. Slow euthanasia. J Palliat Care. 1996;12(4):21–30.

    Article  CAS  PubMed  Google Scholar 

  49. Kirk TW, Mahon MM, Palliative Sedation Task Force of the National Hospice and Palliative Care Organization Ethics Committee. National Hospice and Palliative Care Organization (NHPCO) position statement and commentary on the use of palliative sedation in imminently dying terminally ill patients. J Pain Symptom Manag. 2010;39(5):914–23.

    Article  Google Scholar 

  50. Verkerk M, van Wijlick E, Legemaate J, de Graeff A. A national guideline for palliative sedation in the Netherlands. J Pain Symptom Manag. 2007;34(6):666–70.

    Article  Google Scholar 

  51. National Ethics Committee, Veterans Health Administration. The ethics of palliative sedation as a therapy of last resort. Am J Hosp Palliat Care. 2006;23(6):483–91.

    Article  Google Scholar 

  52. Cherny NI, Radbruch L, Board of the European Association for Palliative Care. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med. 2009;23(7):581–93.

    Article  PubMed  Google Scholar 

  53. Kremling A, Schildmann J. What do you mean by “palliative sedation”? BMC Palliat Care. 2020;19(1):147.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Heijltjes MT, van Thiel GJMW, Rietjens JAC, van der Heide A, de Graeff A, van Delden JJM. Changing practices in the use of continuous sedation at the end of life: a systematic review of the literature. J Pain Symptom Manag. 2020;60(4):828–846.e3.

    Article  Google Scholar 

  55. ten Have H, Welie JVM. Palliative sedation versus euthanasia: an ethical assessment. J Pain Symptom Manag. 2014;47(1):123–36.

    Article  Google Scholar 

  56. Takla A, Savulescu J, Kappes A, Wilkinson DJC. British laypeople’s attitudes towards gradual sedation, sedation to unconsciousness and euthanasia at the end of life. PLoS One. 2021;16(3):e0247193.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  57. Beller EM, van Driel ML, McGregor L, Truong S, Mitchell G. Palliative pharmacological sedation for terminally ill adults. Cochrane Database Syst Rev. 2015;1(1):CD010206.

    PubMed  Google Scholar 

  58. Teno JM, Lynn J, Phillips RS, Murphy D, Youngner SJ, Bellamy P, et al. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatments. J Clin Ethics. 1994;5(1):23–30.

    Article  CAS  PubMed  Google Scholar 

  59. Teno JM, Hakim RB, Knaus WA, Wenger NS, Phillips RS, Wu AW, et al. Preferences for cardiopulmonary resuscitation: physician-patient agreement and hospital resource use. The SUPPORT Investigators. J Gen Intern Med. 1995;10(4):179–86.

    Article  CAS  PubMed  Google Scholar 

  60. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. 4th ed. Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.nationalcoalitionhpc.org/ncp.

    Google Scholar 

  61. Centers for Medicare & Medicaid Services. Baltimore, MD; 2022. www.hospicecahpssurvey.org.

  62. Anhang Price R, Tolpadi A, Schlang D, Bradley MA, Parast L, Teno JM, et al. Characteristics of hospices providing high-quality care. J Palliat Med. 2020;23(12):1639–43.

    Article  PubMed  Google Scholar 

  63. Kelley A, Deb P, Du Q, Aldridge M, Morrison R. Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Affairs (Project Hope). 2013;32:552–61.

    Article  PubMed  Google Scholar 

  64. Morrison RS, Penrod JD, Cassel JB, Caust-Ellenbogen M, Litke A, Spragens L, et al. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med. 2008;168(16):1783–90.

    Article  PubMed  Google Scholar 

  65. National Hospice and Palliative Care Organization 2020 edition: hospice facts & figures. NHPCO. 2020 [cited 2022 Jan 17]. Available from: https://www.nhpco.org/hospice-facts-figures/.

  66. Thompson JW, Carlson MDA, Bradley EH. US hospice industry experienced considerable turbulence from changes in ownership, growth, and shift to for-profit status. Health Aff (Millwood). 2012;31(6):1286–93.

    Article  PubMed  Google Scholar 

  67. Center for Medicare & Medicaid Services. Medicare program; FY 2015 hospice wage index and payment rate update; hospice quality reporting requirements and process and appeals for part D payment for drugs for beneficiaries enrolled in hospice. Fed Regist. 2014;79(163):50451.

    Google Scholar 

  68. Kamal AH, Currow DC, Ritchie CS, Bull J, Abernethy AP. Community-based palliative care: the natural evolution for palliative care delivery in the U.S. J Pain Symptom Manag. 2013;46(2):254–64.

    Article  Google Scholar 

  69. Albert RH. End-of-life care: managing common symptoms. Am Fam Physician. 2017;95(6):356–61.

    PubMed  Google Scholar 

  70. Grande GE, Austin L, Ewing G, O’Leary N, Roberts C. Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial. BMJ Support Palliat Care. 2017;7(3):326–34.

    PubMed  Google Scholar 

  71. Higginson IJ, Sarmento VP, Calanzani N, Benalia H, Gomes B. Dying at home—is it better: a narrative appraisal of the state of the science. Palliat Med. 2013;27(10):918–24.

    Article  PubMed  Google Scholar 

  72. Shepperd S, Gonçalves-Bradley DC, Straus SE, Wee B. Hospital at home: home-based end-of-life care. Cochrane Database Syst Rev 2021;3 [cited 2022 Jan 16]. Available from: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD009231.pub3/full.

  73. Pollock K. Is home always the best and preferred place of death? BMJ. 2015;351:h4855.

    Article  PubMed  Google Scholar 

  74. Givens JL, Selby K, Goldfeld KS, Mitchell SL. Hospital transfers of nursing home residents with advanced dementia. J Am Geriatr Soc. 2012;60(5):905–9.

    Article  PubMed  PubMed Central  Google Scholar 

  75. Gozalo P, Teno JM, Mitchell SL, Skinner J, Bynum J, Tyler D, et al. End-of-life transitions among nursing home residents with cognitive issues. N Engl J Med. 2011;365(13):1212–21.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  76. Center to Advance Palliative Care and the National Palliative Care Research Center. America’s care of serious illness: a state-by-state report card on access to palliative care in our nation’s hospitals. 2019. Available from: https://reportcard.capc.org/.

  77. Ahluwalia SC, Chen C, Raaen L, Motala A, Walling AM, Chamberlin M, et al. A systematic review in support of the national consensus project clinical practice guidelines for quality palliative care, fourth edition. J Pain Symptom Manag. 2018;56(6):831–70.

    Article  Google Scholar 

  78. Miller SC, Lima J, Gozalo PL, Mor V. The growth of hospice care in U.S. nursing homes. J Am Geriatr Soc. 2010;58(8):1481–8.

    Article  PubMed  PubMed Central  Google Scholar 

  79. van der Steen JT, Deliens L, Koopmans RTCM, Onwuteaka-Philipsen BD. Physicians’ perceptions of suffering in people with dementia at the end of life. Palliat Support Care. 2017;15(5):587–99.

    Article  PubMed  Google Scholar 

  80. Katz PR, Ryskina K, Saliba D, Costa A, Jung H-Y, Wagner LM, et al. Medical care delivery in U.S. nursing homes: current and future practice. Gerontologist. 2020;61(4):595–604.

    Article  PubMed Central  Google Scholar 

  81. Center for Medicare and Medicaid Services. COVID-19 nursing home data. [cited 2022 Jan 17]. Available from: https://data.cms.gov/covid-19/covid-19-nursing-home-data.

  82. Hendriks SA, Smalbrugge M, Gageldonk-Lafeber ABV, Galindo-Garre F, Schipper M, Hertogh CMPM, 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. 2017;31(3):200–8.

    Article  PubMed  Google Scholar 

  83. Miranda R, van der Steen JT, Smets T, Van den Noortgate N, Deliens L, Payne S, et al. Comfort and clinical events at the end of life of nursing home residents with and without dementia: the six-country epidemiological PACE study. Int J Geriatr Psychiatr. 2020 [cited 2022 Jan 8]. https://doi.org/10.1002/gps.5290.

  84. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529–38.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  85. van der Steen JT, Radbruch L, Hertogh CMPM, de Boer ME, Hughes JC, Larkin P, et al. 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(3):197–209.

    Article  PubMed  Google Scholar 

  86. Gill TM, Gahbauer EA, Han L, Allore HG. Trajectories of disability in the last year of life. N Engl J Med. 2010;362(13):1173–80.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  87. Reyniers T, Deliens L, Pasman HR, Morin L, Addington-Hall J, Frova L, et al. International variation in place of death of older people who died from dementia in 14 European and non-European countries. J Am Med Dir Assoc. 2015;16(2):165–71.

    Article  PubMed  Google Scholar 

  88. Regier NG, Cotter VT, Hansen BR, Taylor JL, Wright RJ. Place of death for persons with and without cognitive impairment in the United States. J Am Geriatr Soc. 2021;69(4):924–31.

    Article  PubMed  PubMed Central  Google Scholar 

  89. Xu W, Wu C, Fletcher J. Assessment of changes in place of death of older adults who died from dementia in the United States, 2000-2014: a time-series cross-sectional analysis. BMC Public Health. 2020;20(1):765.

    Article  PubMed  PubMed Central  Google Scholar 

  90. Wendrich-van Dael A, Bunn F, Lynch J, Pivodic L, Van den Block L, Goodman C. Advance care planning for people living with dementia: an umbrella review of effectiveness and experiences. Int J Nurs Stud. 2020;107:103576.

    Article  PubMed  Google Scholar 

  91. Keijzer-van Laarhoven AJ, Touwen DP, Tilburgs B, van Tilborg-den BM, Pees C, Achterberg WP, et al. Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies. BMJ Open. 2020;10(11):e038528.

    Article  PubMed  PubMed Central  Google Scholar 

  92. Ellis-Smith C, Evans CJ, Bone AE, Henson LA, Dzingina M, Kane PM, et al. Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review. BMC Med. 2016;14(1):38.

    Article  PubMed  PubMed Central  Google Scholar 

  93. Carey TS, Hanson L, Garrett JM, Lewis C, Phifer N, Cox CE, et al. Expectations and outcomes of gastric feeding tubes. Am J Med. 2006;119(6):527.e11–6.

    Article  PubMed  Google Scholar 

  94. Teno JM, Gozalo PL, Mitchell SL, Kuo S, Rhodes RL, Bynum JPW, et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc. 2012;60(10):1918–21.

    Article  PubMed  PubMed Central  Google Scholar 

  95. Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med. 2000;342(3):206–10.

    Article  CAS  PubMed  Google Scholar 

  96. Davies N, Barrado-Martin Y, Rait G, Fukui A, Candy B, Smith CH, et al. Enteral tube feeding for people with severe dementia. Cochrane Database Syst Rev. 2019;2019(12):CD013503.

    PubMed Central  Google Scholar 

  97. Hwang D, Teno JM, Gozalo P, Mitchell S. Feeding tubes and health costs postinsertion in nursing home residents with advanced dementia. J Pain Symptom Manag. 2014;47(6):1116–20.

    Article  Google Scholar 

  98. Anantapong K, Barrado-Martín Y, Nair P, Rait G, Smith CH, Moore KJ, et al. How do people living with dementia perceive eating and drinking difficulties? A qualitative study. Age Ageing. 2021;50(5):1820–8.

    Article  PubMed  PubMed Central  Google Scholar 

  99. Barrado-Martín Y, Hatter L, Moore KJ, Sampson EL, Rait G, Manthorpe J, et al. Nutrition and hydration for people living with dementia near the end of life: a qualitative systematic review. J Adv Nurs. 2021;77(2):664–80.

    Article  PubMed  Google Scholar 

  100. American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc. 2014;62(8):1590–3.

    Article  Google Scholar 

  101. Mitchell SL, Mor V, Gozalo PL, Servadio JL, Teno JM. Tube feeding in US nursing home residents with advanced dementia, 2000-2014. JAMA. 2016;316(7):769–70.

    Article  PubMed  PubMed Central  Google Scholar 

  102. Volicer L, Rheaume Y, Brown J, Fabiszewski K, Brady R. Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. JAMA. 1986;256(16):2210–3.

    Article  CAS  PubMed  Google Scholar 

  103. Miller SC, Lima JC, Mitchell SL. Influence of hospice on nursing home residents with advanced dementia who received Medicare-skilled nursing facility care near the end of life. J Am Geriatr Soc. 2012;60(11):2035–41.

    Article  PubMed  PubMed Central  Google Scholar 

  104. 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. 2017;20(5):473–7.

    Article  PubMed  Google Scholar 

  105. Anderson LL, Larson SA, MapelLentz S, Hall-Lande J. A systematic review of U.S. studies on the prevalence of intellectual or developmental disabilities since 2000. Intellect Dev Disabil. 2019;57(5):421–38.

    Article  PubMed  Google Scholar 

  106. McKenzie K, Milton M, Smith G, Ouellette-Kuntz H. Systematic review of the prevalence and incidence of intellectual disabilities: current trends and issues. Curr Dev Disord Rep. 2016;3(2):104–15.

    Article  Google Scholar 

  107. Glover G, Williams R, Heslop P, Oyinlola J, Grey J. Mortality in people with intellectual disabilities in England. J Intellect Disabil Res. 2017;61(1):62–74.

    Article  CAS  PubMed  Google Scholar 

  108. Tuffrey-Wijne I, McLaughlin D, Curfs L, Dusart A, Hoenger C, McEnhill L, et al. Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: a white paper from the European Association of Palliative Care. Palliat Med. 2016;30(5):446–55.

    Article  PubMed  Google Scholar 

  109. Evans E, Bhardwaj A, Brodaty H, Sachdev P, Draper B, Trollor JN. Dementia in people with intellectual disability: insights and challenges in epidemiological research with an at-risk population. Int Rev Psychiatry. 2013;25(6):755–63.

    Article  PubMed  Google Scholar 

  110. American Association on Intellectual and Developmental Disabilities. Caring at the end of life. 2020 [cited 2022 Jan 9]. Available from: https://www.aaidd.org/news-policy/policy/position-statements/caring-at-the-end-of-life.

  111. Tuffrey-Wijne I, Bernal J, Butler G, Hollins S, Curfs L. Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision. J Adv Nurs. 2007;58(1):80–9.

    Article  PubMed  Google Scholar 

  112. Voss H, Vogel A, Wagemans AMA, Francke AL, Metsemakers JFM, Courtens AM, et al. Advance care planning in palliative care for people with intellectual disabilities: a systematic review. J Pain Symptom Manag. 2017;54(6):938–960.e1.

    Article  Google Scholar 

  113. Dunkley S, Sales R. The challenges of providing palliative care for people with intellectual disabilities: a literature review. Int J Palliat Nurs. 2014;20(6):279–84.

    Article  PubMed  Google Scholar 

  114. Ryan K, Guerin S, Dodd P, McEvoy J. Communication contexts about illness, death and dying for people with intellectual disabilities and life-limiting illness. Palliat Support Care. 2011;9(2):201–8.

    Article  PubMed  Google Scholar 

  115. Regnard C, Reynolds J, Watson B, Matthews D, Gibson L, Clarke C. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). J Intellect Disabil Res. 2007;51(Pt 4):277–92.

    Article  CAS  PubMed  Google Scholar 

  116. Donald EE, Stajduhar KI. A scoping review of palliative care for persons with severe persistent mental illness. Palliat Support Care. 2019;17(4):479–87.

    Article  PubMed  Google Scholar 

  117. National Institute of Mental Health. Mental illness. National Institute of Mental Health (NIMH). [cited 2022 Jan 9]. Available from: https://www.nimh.nih.gov/health/statistics/mental-illness.

  118. Trachsel M, Irwin SA, Biller-Andorno N, Hoff P, Riese F. Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks. BMC Psychiatry. 2016;16(1):260.

    Article  PubMed  PubMed Central  Google Scholar 

  119. Ellison, N. Mental health and palliative care: literature review—The British Library. 2008 [cited 2022 Jan 9]. Available from: https://www.bl.uk/collection-items/mental-health-and-palliative-care-literature-review.

  120. Grassi L, Riba M. Cancer and severe mental illness: bi-directional problems and potential solutions. Psychooncology. 2020;29(10):1445–51.

    Article  PubMed  Google Scholar 

  121. Murphy SL, Xu JQ, Kochanek KD, Arias E, Tejada-Vera B. Deaths: final data for 2018. National vital statistics reports, vol. 69(13). Hyattsville, MD: National Center for Health Statistics; 2020.

    Google Scholar 

  122. Kaye EC, Friebert S, Baker JN. Early integration of palliative care for children with high-risk cancer and their families. Pediatr Blood Cancer. 2016;63(4):593–7.

    Article  PubMed  Google Scholar 

  123. Weaver MS, Heinze KE, Kelly KP, Wiener L, Casey RL, Bell CJ, et al. Palliative care as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62(Suppl 5):S829–33.

    Article  PubMed  PubMed Central  Google Scholar 

  124. Cortezzo DE, Meyer M. Neonatal end-of-life symptom management. Front Pediatr. 2020;8:574121.

    Article  PubMed  PubMed Central  Google Scholar 

  125. American Academy of Pediatrics, Section on Hospice and Palliative Care and Committee on Hospital Care, Feudtner C, Friebert S, Jewell J, Friebert S, Carter B, et al. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132(5):966–72.

    Article  Google Scholar 

  126. Carter BS. Pediatric palliative care in infants and neonates. Children (Basel). 2018;5(2):E21.

    Google Scholar 

  127. Xafis V, Gillam L, Hynson J, Sullivan J, Cossich M, Wilkinson D. Caring decisions: the development of a written resource for parents facing end-of-life decisions. J Palliat Med. 2015;18(11):945–55.

    Article  PubMed  PubMed Central  Google Scholar 

  128. Edwards JD, Panitch HB, Nelson JE, Miller RL, Morris MC. Decisions for long-term ventilation for children. perspectives of family members. Ann Am Thorac Soc. 2020;17(1):72–80.

    Article  PubMed  PubMed Central  Google Scholar 

  129. Wolff T, Browne J. Organizing end of life care: parallel planning. Paediatr Child Health. 2011;21(8):378–84.

    Article  Google Scholar 

  130. Lotz JD, Daxer M, Jox RJ, Borasio GD, Führer M. “Hope for the best, prepare for the worst”: a qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliat Med. 2017;31(8):764–71.

    Article  PubMed  Google Scholar 

  131. Taylor J, Murphy S, Chambers L, Aldridge J. Consulting with young people: informing guidelines for children’s palliative care. Arch Dis Child. 2021;106(7):693–7.

    Article  PubMed  Google Scholar 

  132. Klick JC, Friebert S, Hutton N, Osenga K, Pituch KJ, Vesel T, et al. Developing competencies for pediatric hospice and palliative medicine. Pediatrics. 2014;134(6):e1670–7.

    Article  PubMed  Google Scholar 

  133. Lyons O, Forbat L, Menson E, Chisholm JC, Pryde K, Conlin S, et al. Transforming training into practice with the conflict management framework: a mixed methods study. BMJ Paediatr Open. 2021;5(1):e001088.

    Article  PubMed  PubMed Central  Google Scholar 

  134. Wool C, Catlin A. Perinatal bereavement and palliative care offered throughout the healthcare system. Ann Palliat Med. 2019;8(1):S22–9.

    Article  PubMed  Google Scholar 

  135. Cortezzo DE, Ellis K, Schlegel A. Perinatal palliative care birth planning as advance care planning. Front Pediatr. 2020;8:556.

    Article  PubMed  PubMed Central  Google Scholar 

  136. Center to Advance Palliative Care. Pediatric palliative care field guide. 2019 [cited 2021 Dec 30]. Available from: https://www.capc.org/documents/257/.

  137. Knops RRG, Kremer LCM, Verhagen AAE, Dutch Paediatric Palliative Care Guideline Group for Symptoms. Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands. BMC Palliat Care. 2015;14:57.

    Article  PubMed  PubMed Central  Google Scholar 

  138. Arias-Casais N, Garralda E, Pons JJ, Marston J, Chambers L, Downing J, et al. Mapping pediatric palliative care development in the WHO-European Region: children living in low-to-middle-income countries are less likely to access it. J Pain Symptom Manag. 2020;60(4):746–53.

    Article  Google Scholar 

  139. Morrison RS, Meier DE, Arnold RM. What’s wrong with advance care planning? JAMA. 2021;326(16):1575–6.

    Article  PubMed  PubMed Central  Google Scholar 

  140. Ortman JM, Velkoff VA, Hogan H UC. An aging nation: the older population in the United States. Census.gov [cited 2022 Jan 17]. Available from: https://www.census.gov/library/publications/2014/demo/p25-1140.html.

  141. Orlovic M, Smith K, Mossialos E. Racial and ethnic differences in end-of-life care in the United States: evidence from the Health and Retirement Study (HRS). SSM Popul Health. 2018;7:100331.

    Article  PubMed  PubMed Central  Google Scholar 

  142. Ornstein KA, Roth DL, Huang J, Levitan EB, Rhodes JD, Fabius CD, et al. Evaluation of racial disparities in hospice use and end-of-life treatment intensity in the REGARDS cohort. JAMA Netw Open. 2020;3(8):e2014639.

    Article  PubMed  PubMed Central  Google Scholar 

  143. Lupu D, Quigley L, Mehfoud N, Salsberg ES. The growing demand for hospice and palliative medicine physicians: will the supply keep up? J Pain Symptom Manag. 2018;55(4):1216–23.

    Article  Google Scholar 

  144. Ankuda CK, Petterson SM, Wingrove P, Bazemore AW. Regional variation in primary care involvement at the end of life. Ann Fam Med. 2017;15(1):63–7.

    Article  PubMed  PubMed Central  Google Scholar 

  145. Bodenheimer T, Sinsky C. From triple to quadruple aim: care of the patient requires care of the provider. Ann Fam Med. 2014;12(6):573–6.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Margaret R. Helton .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Helton, M.R., van der Steen, J.T. (2023). End-of-Life Care. In: Daaleman, T.P., Helton, M.R. (eds) Chronic Illness Care. Springer, Cham. https://doi.org/10.1007/978-3-031-29171-5_21

Download citation

  • DOI: https://doi.org/10.1007/978-3-031-29171-5_21

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-29170-8

  • Online ISBN: 978-3-031-29171-5

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics