Principles of Good End-of-Life Care

Good end-of-life care is based on the understanding that death is inevitable, and a natural part of life. As the final stage in a person’s life it is a uniquely important time for the dying person and their family and close friends.

The goals of end-of-life care are: to maintain the comfort, choices, and quality of life of a person who is recognised to be dying (in the terminal phase); to support their individuality; and to care for the psychosocial and spiritual needs of themselves and their families. Support for families, if needed, continues after death as bereavement care. End-of-life care also aims to reduce inappropriate and burdensome healthcare interventions and to offer a choice of place of care when possible.

What is known

There is a body of good evidence (mostly from the USA) which suggests that the factors that are most important to patients and families at the end of life are:

  • Pain and symptom management
  • Preparation for the end of life 
  • Relationships between patients, family members and healthcare providers 
  • Achieving a sense of completion. [1-2]

Spiritual care is regarded as important by many patients and families at the end of life. [3-5] Cultural differences also need to be identified and appropriately addressed. [6]

The concept of satisfaction with end-of-life care has been studied in a recent systematic review. A number of aspects of patient and family satisfaction with care are identified in the literature; they are - accessibility, co-ordination, and competence of health care services, quality of communication and relationships with health care providers, personalisation of care, and support for decision-making. A meta-analysis of studies of end-of-life care showed that palliative care services improved satisfaction with end of life care. [7]

Shared decision-making between clinicians and patients and their families is possible when all have an awareness of the patient’s approaching death. It increases the likelihood of a good death - one in which the patient’s needs, wishes and preferences can be addressed. [8] Reluctance by either clinicians or family to disclose information about a patient’s changing condition can worsen patient distress. Supporting patients’ and families’ acceptance of the inevitability of death is acknowledged as a central part of end-of-life care. [9] Discussing changing goals of care is an important part of this process. [10] The most common goals of care identified by patients as they approach the end of life are: to be cured; to live longer; to improve or maintain functionality / quality of life / independence; to be comfortable; to achieve life goals; and support for family / caregiver. [11] These goals may shift as patients become increasingly aware that their death is imminent.

Advance care planning aims to encourage people to consider, discuss, and document their future wishes for care – well in advance if possible. The impact of advance care planning is mixed, and uptake of advance care planning processes has not been widespread. In a very large US study of the impact of advance care planning on complex hospital care at the end of life, the SUPPORT trial, it appears that advance care planning did not significantly affect outcomes. However, there is also evidence from the SUPPORT study that a substantial minority of seriously ill patients wish to discuss their treatment preferences, and may not have the opportunity to do so. [12]

What it means in practice 

  • The most effective end-of-life care is provided when there is skillful communication with patients and families about realistic goals of care, and attention to understanding the patient’s and family’s concerns [13-14] as well as competent symptom management.
  • In order to achieve the goals which are important to patients and families, and to provide good end-of-life care, it is essential to identify that a patient is imminently dying. [15]
  • It is sometimes difficult to identify when a person is close to the terminal phase with a prognosis of days to weeks but, where this is possible, this knowledge may be of great value to patients so that they can reorient their priorities. [15]
  1. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, Grambow S, Parker J, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001 Sep;22(3):727-37.
  2. Bookbinder M, Rutledge DM, Donaldson NE. Pravikoff DS. End-of-life care series. Part I. Principles. Online J Clin Innovat. 2001 Nov 15;4(4):1-30. No Abstract Available.
  3. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, psysicians and other care providers. JAMA. 2000 Nov 15;284(19):2476-82.
  4. Chochinov HM, Cann BJ. Interventions to enhance the spiritual aspects of dying. J Palliat Med. 2005;8 Suppl 1:S103-15.
  5. Williams AL. Perspectives on spirituality at the end of life: a meta-summary. Palliat Support Care. 2006 Dec;4(4):407-17.
  6. National EOL Framework Forum. Health system reform and care at the end of life: a guidance document. Canberra: Palliative Care Australia; 2010. (918kb pdf)
  7. Dy SM, Shugarman LR, Lorenz KA, Mularski RA, Lynn J; RAND-Southern California Evidence-Based Practice Center. A systematic review of satisfaction with care at the end of life. J Am Geriatr Soc. 2008 Jan;56(1):124-9. Epub 2007 Nov 20.
  8. Frank RK. Shared decision making and its role in end of life care. Br J Nurs. 2009 May 28;18(10):612-8.
  9. Lowey SE. Letting go before death: a concept analysis. J Adv Nurs. 2008 Jul;63(2):208-15.
  10. Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008 Jan 15;148(2):147-59.
  11. Kaldjian LC, Curtis AE, Shinkunas LA, Cannon KT. Goals of care toward the end of life: a structured literature review. Am J Hosp Palliat Care. 2008 Dec-2009 Jan;25(6):501-11.
  12. Rutledge DN, Donaldson NE, Pravikoff DS. End-of-life care series. Part II. End-of-life care for hospitalized adults in America: learnings from the SUPPORT and HELP studies. Online J Clin Innovat. 2001 Nov 15;4(6):1-60. No Abstract Available.
  13. Tulsky JA. Interventions to enhance communication among patients, providers, and families. J Palliat Med. 2005;8 Suppl 1:S95-102.
  14. Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007 Jul;34(1):81-93. Epub 2007 May 25.
  15. Lamont EB. A demographic and prognostic approach to defining the end of life. J Palliat Med. 2005;8 Suppl 1:S12-21.

Guidelines

Last updated 18 January 2017