Advertisement

Palliative Care in Chronic Illness and Multimorbidity

  • Tim Luckett
  • Meera AgarEmail author
  • Jane J. Phillips
Reference work entry

Abstract

Extended chronic phases of life-limiting illness and increasing multimorbidity present growing challenges that require a new approach to healthcare. A population-based approach is needed to harmonize policies, systems and services relating to chronic and palliative care. Partnerships are needed between different healthcare disciplines and specialties, and between health services and communities. Technology is likely to play an increasingly important role in transfer of information (including advance care plans) and enabling coordination of care. During periods of stability, patients and families should be actively involved in keeping well and helped to “hope for the best while preparing for the worst” to support sustained coping. A rapid response is needed to clinical events that helps people return to stability and takes preventive action against future events wherever possible. Transitions between chronic and terminal phases of illness and different settings (community, residential and hospital) need focal support to prevent people “falling through the gaps.” The optimal timing of referral to specialist palliative care services is the subject of ongoing debate and research. Consumer advocacy may play an important role in raising awareness and advocating for appropriate resourcing and changes to policy and legislation.

References

  1. Abel J. How to build compassionate communities at the end of life. Compassionate communities symposium; 20–21 Feb; Sydney 2017.Google Scholar
  2. Abraham WT, Smith SA. Devices in the management of advanced, chronic heart failure. Nat Rev Cardiol. 2013;10(2):98–110.PubMedGoogle Scholar
  3. Agar M, Luckett T, Phillips J. Role of palliative care in survivorship. Cancer Forum. 2015;39(2):90–4.Google Scholar
  4. Aiken LS, Butner J, Lockhart CA, Volk-Craft BE, Hamilton G, Williams FG. Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med. 2006;9(1):111–26.PubMedGoogle Scholar
  5. Aulino F, Foley K. The project on death in America. J R Soc Med. 2001;94(9):492–5.PubMedPubMedCentralGoogle Scholar
  6. Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Opipari-Arrigan L, Hartung H. Coproduction of healthcare service. BMJ Qual Saf. 2016;25(7):509–17.PubMedGoogle Scholar
  7. Bayliss EA, Bosworth HB, Noel PH, Wolff JL, Damush TM, McIver L. Supporting self-management for patients with complex medical needs: recommendations of a working group. Chronic Illn. 2007;3(2):167–75.PubMedGoogle Scholar
  8. Beernaert K, Deliens L, De Vleminck A, Devroey D, Pardon K, Block LV, Cohen J. Is there a need for early palliative care in patients with life-limiting illnesses? Interview study with patients about experienced care needs from diagnosis onward. Am J Hosp Palliat Care. 2016;33(5):489–97.PubMedGoogle Scholar
  9. Bishop FL, Yardley L, Lewith GT. A systematic review of beliefs involved in the use of complementary and alternative medicine. J Health Psychol. 2007;12(6):851–67.PubMedGoogle Scholar
  10. Black DA. Case management for elderly people in the community. BMJ. 2007;334(7583):3–4.PubMedGoogle Scholar
  11. Boyd K, Murray SA. Recognising and managing key transitions in end of life care. BMJ. 2010;341:c4863.PubMedGoogle Scholar
  12. Brannstrom M, Ekman I, Norberg A, Boman K, Strandberg G. Living with severe chronic heart failure in palliative advanced home care. Eur J Cardiovasc Nurs. 2006;5(4):295–302.PubMedGoogle Scholar
  13. Burge F, Lawson B, Mitchell G. How to move to a palliative approach to care for people with multimorbidity. BMJ. 2012;345:e6324.PubMedGoogle Scholar
  14. Calam MJ, Gwynn A, Perkins P. The role of specialist palliative care in managing patients with multimorbidity. BMJ Support Palliat Care. 2012;2(1):48–50.PubMedGoogle Scholar
  15. Canadian Hospice Palliative Care Association. Integrating a palliative approach into the management of chronic, life-threatening diseases: who, how and when? Ottawa: CHPCA; 2013.Google Scholar
  16. Clayton JM, Hancock K, Parker S, Butow PN, Walder S, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Olver IN, Tattersall MHN. Sustaining hope when communicating with terminally ill patients and their families: a systematic review. Psychooncology. 2008;17(7):641–59.PubMedGoogle Scholar
  17. Coleman EA. Falling through the cracks: challenges and opportunities for improving transitional care for persons with continuous complex care needs. J Am Geriatr Soc. 2003;51(4):549–55.PubMedGoogle Scholar
  18. Corbin J, Strauss A. Unending work and care: managing chronic illness at home. San Francisco: Jossey-Bass; 1988.Google Scholar
  19. Cox K, Bird L, Arthur A, Kennedy S, Pollock K, Kumar A, Stanton W, Seymour J. Public attitudes to death and dying in the UK: a review of published literature. BMJ Support Palliat Care. 2013;3(1):37–45.PubMedGoogle Scholar
  20. Dasgupta I, Rayner HC. In good conscience – safely withholding dialysis in the elderly. Semin Dial. 2009;22(5):476–9.PubMedGoogle Scholar
  21. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ. 2006;333(7574):886.PubMedPubMedCentralGoogle Scholar
  22. de Groot V, Beckerman H, Lankhorst GJ, Bouter LM. How to measure comorbidity. A critical review of available methods. J Clin Epidemiol. 2003;56(3):221–9.PubMedGoogle Scholar
  23. Dzingina MD, Higginson IJ. Public health and palliative care in 2015. Clin Geriatr Med. 2015;31(2):253–63.PubMedGoogle Scholar
  24. Feinstein AR. The pre-therapeutic classification of co-morbidity in chronic disease. J Chronic Dis. 1970;23(7):455–68.PubMedGoogle Scholar
  25. Feuz C. Hoping for the best while preparing for the worst: a literature review of the role of hope in palliative cancer patients. J Med Imag Radiat Sci. 2012;43:168–74.Google Scholar
  26. Freid VM, Bernstein AB, Bush MA. Multiple chronic conditions among adults aged 45 and over: trends over the past 10 years. NCHS Data Brief. 2012;100:1–8.Google Scholar
  27. Glare PA, Virik K. Can we do better in end-of-life care? The mixed management model and palliative care. Med J Aust. 2001;175(10):530–3.PubMedGoogle Scholar
  28. Goodman C, Dening T, Gordon AL, Davies SL, Meyer J, Martin FC, Gladman JR, Bowman C, Victor C, Handley M, Gage H, Iliffe S, Zubair M. Effective health care for older people living and dying in care homes: a realist review. BMC Health Serv Res. 2016;16(1):269.PubMedPubMedCentralGoogle Scholar
  29. Harley C, Pini S, Bartlett YK, Velikova G. Defining chronic cancer: patient experiences and self-management needs. BMJ Support Palliat Care. 2015;5(4):343–50.PubMedGoogle Scholar
  30. Institute of Medicine. Living well with chronic illness: a call for public health action. Washington, DC: The National Academies Press; 2012.Google Scholar
  31. Irwin KE, Greer JA, Khatib J, Temel JS, Pirl WF. Early palliative care and metastatic non-small cell lung cancer: potential mechanisms of prolonged survival. Chron Respir Dis. 2013;10(1):35–47.PubMedGoogle Scholar
  32. Kennedy VL, Lloyd-Williams M. How children cope when a parent has advanced cancer. Psychooncology. 2009;18(8):886–92.PubMedGoogle Scholar
  33. Kinch Westerdahl A, Sjöblom J, Mattiasson A-C, Rosenqvist M, Frykman V. Implantable cardioverter-defibrillator therapy before death: high risk for painful shocks at end of life. Circulation. 2014;129(4):422–9.PubMedGoogle Scholar
  34. Larson AM, Curtis JR. Integrating palliative care for liver transplant candidates: “too well for transplant, too sick for life”. JAMA. 2006;295(18):2168–76.PubMedGoogle Scholar
  35. Lehnert T, Heider D, Leicht H, Heinrich S, Corrieri S, Luppa M, Riedel-Heller S, Konig HH. Review: health care utilization and costs of elderly persons with multiple chronic conditions. Med Care Res Rev. 2011;68(4):387–420.PubMedGoogle Scholar
  36. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7.PubMedGoogle Scholar
  37. Luckett T, Davidson PM, Green A, Boyle F, Stubbs J, Lovell M. Assessment and management of adult cancer pain: a systematic review and synthesis of recent qualitative studies aimed at developing insights for managing barriers and optimizing facilitators within a comprehensive framework of patient care. J Pain Symptom Manag. 2013;46(2):229–53.Google Scholar
  38. Luckett T, Phillips J, Virdun C, Agar M, Green A, Davidson PM. Elements of effective palliative care models: a rapid review. BMC Health Serv Res. 2014a;14(136).  https://doi.org/10.1186/472-6963-14-136.
  39. Luckett T, Sellars M, Tieman J, Pollock CA, Silvester W, Butow PN, Detering KM, Brennan F, Clayton JM. Advance care planning for adults with CKD: a systematic integrative review. Am J Kidney Dis. 2014b;63(5):761–70.PubMedGoogle Scholar
  40. Luengo-Fernandez R, Leal J, Gray AM. UK research expenditure on dementia, heart disease, stroke and cancer: are levels of spending related to disease burden? Eur J Neurol. 2012;19(1):149–54.PubMedGoogle Scholar
  41. Lynn J, Adamson DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington, DC: Rand Health; 2003.Google Scholar
  42. Maciasz RM, Arnold RM, Chu E, Park SY, White DB, Vater LB, Schenker Y. Does it matter what you call it? A randomized trial of language used to describe palliative care services. Support Care Cancer. 2013;21(12):3411–9.PubMedGoogle Scholar
  43. Marengoni A, Angleman S, Melis R, Mangialasche F, Karp A, Garmen A, Meinow B, Fratiglioni L. Aging with multimorbidity: a systematic review of the literature. Ageing Res Rev. 2011;10(4):430–9.PubMedGoogle Scholar
  44. Marks R, Allegrante JP, Lorig K. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (part II). Health Promot Pract. 2005;6(2):148–56.PubMedGoogle Scholar
  45. Mason B, Nanton V, Epiphaniou E, Murray SA, Donaldson A, Shipman C, Daveson BA, Harding R, Higginson IJ, Munday D, Barclay S, Dale J, Kendall M, Worth A, Boyd K. ‘My body’s falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers. BMJ Support Palliat Care. 2016;6(1):60–5.PubMedGoogle Scholar
  46. May P, Garrido MM, Cassel JB, Kelley AS, Meier DE, Normand C, Stefanis L, Smith TJ, Morrison RS. Palliative care teams’ cost-saving effect is larger for cancer patients with higher numbers of comorbidities. Health Aff (Millwood). 2016;35(1):44–53.Google Scholar
  47. McCorkle R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, Wagner EH. Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011;61(1):50–62.PubMedPubMedCentralGoogle Scholar
  48. Mendes A. Demedicalising the cardiac patient. Br J Cardiac Nurs. 2015;10:577.Google Scholar
  49. Murray MA, Fiset V, Young S, Kryworuchko J. Where the dying live: a systematic review of determinants of place of end-of-life cancer care. Oncol Nurs Forum. 2009;36(1):69–77.PubMedGoogle Scholar
  50. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–11.PubMedPubMedCentralGoogle Scholar
  51. National Gold Standards framework. Prognostic Indicator Guidance 4th Edition. 2011 [cited Feb 22 2017]; Available from: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/GeneralFiles/Prognostic Indicator Guidance October 2011.pdf
  52. National Institute for Health and Care Excellence. Multimorbidity: clinical assessment and management. London: NICE; 2016. https://www.nice.org.uk/guidance/ng56Google Scholar
  53. Ohman M, Soderberg S, Lundman B. Hovering between suffering and enduring: the meaning of living with serious chronic illness. Qual Health Res. 2003;13(4):528–42.PubMedGoogle Scholar
  54. Oliver-Baxter J, Bywood P, Brown L. Integrated care: what policies support and influence integration in health care across New Zealand, England, Canada and the United States? PHCRIS policy issue review. Adelaide: Primary Health Care Research & Information Service; 2013.Google Scholar
  55. Ouwens M, Wollersheim H, Hermens R, Hulscher M, Grol R. Integrated care programmes for chronically ill patients: a review of systematic reviews. Int J Qual Health Care. 2005;17(2):141–6.PubMedGoogle Scholar
  56. Petrillo LA, Ritchie CS. The challenges of symptom management for patients with multimorbidity in research and practice: a thematic review. Prog Palliat Care. 2016;24:262–7.PubMedPubMedCentralGoogle Scholar
  57. Phillips JL, Currow DC. Cancer as a chronic disease. Collegian. 2010;17:47–50.PubMedGoogle Scholar
  58. Phillips JL, West PA, Davidson PM, Agar M. Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: evidence from an integrative review. Int J Nurs Stud. 2013;50(8):1122–35.PubMedGoogle Scholar
  59. Price M, Bellwood P, Kitson N, Davies I, Weber J, Lau F. Conditions potentially sensitive to a personal health record (PHR) intervention, a systematic review. BMC Med Inform Decis Mak. 2015;15:32.PubMedPubMedCentralGoogle Scholar
  60. Reeve E, Thompson W, Farrell B. Deprescribing: a narrative review of the evidence and practical recommendations for recognizing opportunities and taking action. Eur J Intern Med. 2017;38:3–11.PubMedGoogle Scholar
  61. Roychowdhury S, Chinnaiyan AM. Translating cancer genomes and transcriptomes for precision oncology. CA Cancer J Clin. 2016;66(1):75–88.PubMedGoogle Scholar
  62. Sallnow L, Richardson H, Murray SA, Kellehear A. The impact of a new public health approach to end-of-life care: a systematic review. Palliat Med. 2016;30(3):200–11.PubMedGoogle Scholar
  63. Sanders C, Rogers A, Gately C, Kennedy A. Planning for end of life care within lay-led chronic illness self-management training: the significance of ‘death awareness’ and biographical context in participant accounts. Soc Sci Med. 2008;66(4):982–93.PubMedGoogle Scholar
  64. Sepulveda CM, Yoshida A, Ulrich T. Palliative care: the World Health Organisation’s global perspective. J Pain Symptom Manag. 2002;24:91–6.Google Scholar
  65. Shen Z, Ruan Q, Yu Z, Sun Z. Chronic kidney disease-related physical frailty and cognitive impairment: a systemic review. Geriatr Gerontol Int. 2016;17:529.PubMedGoogle Scholar
  66. Smith SM, Soubhi H, Fortin M, Hudon C, O’Dowd T. Managing patients with multimorbidity: systematic review of interventions in primary care and community settings. BMJ. 2012;345:e5205.PubMedPubMedCentralGoogle Scholar
  67. Stromberg A, Fluur C, Miller J, Chung ML, Moser DK, Thylen I. ICD recipients’ understanding of ethical issues, ICD function, and practical consequences of withdrawing the ICD in the end-of-life. Pacing Clin Electrophysiol. 2014;37(7):834–42.PubMedGoogle Scholar
  68. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733–42.PubMedGoogle Scholar
  69. Thorne S, Roberts D, Sawatzky R. Unravelling the tensions between chronic disease management and end-of-life planning. Res Theory Nurs Pract. 2016;30(2):91–103.PubMedGoogle Scholar
  70. Verbrugge LM, Lepkowski JM, Imanaka Y. Comorbidity and its impact on disability. Milbank Q. 1989;67(3–4):450–84.PubMedGoogle Scholar
  71. World Health Organization. WHO definition of palliative care. 2002 [cited Feb 22 2017]; Available from: http://www.who.int/cancer/palliative/definition/en/
  72. World Health Organization. The global burden of disease: 2004 update. Geneva: WHO; 2004.Google Scholar
  73. World Health Organization (WHO). Innovative care for chronic conditions: building blocks for action. Geneva: WHO; 2002.Google Scholar
  74. Zafar SY, Peppercorn JM, Schrag D, Taylor DH, Goetzinger AM, Zhong X, Abernethy AP. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient’s experience. Oncologist. 2013;18(4):381–90.PubMedPubMedCentralGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Tim Luckett
    • 5
  • Meera Agar
    • 1
    • 2
    • 3
    • 4
    Email author
  • Jane J. Phillips
    • 6
    • 7
  1. 1.Faculty of HealthUniversity of Technology SydneyUltimoAustralia
  2. 2.South Western Sydney Clinical School, School of MedicineUniversity of New South Wales (UNSW)SydneyAustralia
  3. 3.Ingham Institute for Applied Medical ResearchLiverpoolAustralia
  4. 4.Palliative Care Service, South Western Sydney Local Health DistrictSydneyAustralia
  5. 5.Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health, University of Technology SydneySydneyAustralia
  6. 6.Faculty of Health, Improving Palliative, Aged and Chronic Care Through Clinical Research and Translation, University of Technology SydneyUltimoAustralia
  7. 7.School of Nursing, University of Notre Dame Australia-SydneyDarlinghurstAustralia

Personalised recommendations