Symptom Management at the End of Life

Good management of symptoms in the terminal phase is one of the main concerns of patients and their families. The physical comfort of dying patients requires thorough assessment, excellent nursing care and careful prescribing.

What is known

Some patients may experience uncontrolled and distressing symptoms at the end of life. [1]

The palliative care approach to symptom management is based on thorough assessment of current symptoms, and planning ahead for common problems. There is supportive evidence from a systematic review which showed a small but consistent positive impact of palliative care services on symptoms, quality of life, and satisfaction at the end of life. [2] Studies included in this review were extremely heterogeneous, and so these findings should be interpreted with care.

The evidence base supporting prescribing for end-of-life symptoms is not well developed, and many of the prescribing practices which have developed are either empirical or extrapolated from other settings. [1] Both clinical and ethical considerations need to be included in end-of-life care decision-making, for instance in regard to giving fluids or nutritional support for dying patients. [3-4]

End of life Guidelines and Pathways may assist appropriate and timely prescribing & decision making. 

If treatment is determined to be ineffective in relieving suffering, sedation may be a symptom management option. Guidelines for making this decision have been developed, based on systematic reviews and expert consensus. The guidelines discuss criteria for assessing refractoriness of symptoms, practical approaches to managing sedation, additional issues such as decisions about giving fluids, and the ethical distinction between palliative sedation and euthanasia. [5-8] 

What it means in practice

The principles of prescribing at the end of life are:

  • Medications and doses prescribed should be based on careful assessment of the dying person’s symptoms and problems.
  • Doses should be proportionate to symptoms identified, and response to treatment should be regularly re-assessed. 
  • The burden of how medication is given and of potential side effects should be minimised. Palliative care medications at the end of life are usually given via the subcutaneous route, which is generally the least invasive and most reliable route in the dying patient. 
  • Persistent symptoms require regular rather than PRN (as needed) orders. 
  • PRN orders should be written for intermittent symptoms, and to cover possible 'breakthrough' events for persistent symptoms. 
  • Anticipatory PRN prescribing for problems which may occur during the dying process (eg, delirium / agitation; respiratory secretions; pain) is an important aspect of good end-of-life care. This may include crisis orders to cover foreseeable problems in particular patients, such as bleeding, severe respiratory distress, or seizures. 
  • To ensure prompt and effective symptom control, it is important to plan ahead for access to medications for the common symptoms which occur in dying patients, and make sure that caregivers are able to give the necessary medications. The practicalities of how this is managed will vary according to the setting of care – ie, whether the person is dying at home, in an acute hospital, in a nursing home, or in a palliative care unit.
  • Even though complex symptom control issues can bring pressure to consider palliative sedation from carers and relatives (or clinicans who may not have the expertise) to optimise symptom control, palliative sedation should not be initiated without adequate assessment of symptoms, engagament of appropriate clinicans and discussion and agreement with patient and families.

The common physical problems which need to be assessed and planned for include: 

  • Pain
  • Delirium / agitation
  • Dyspnoea
  • Respiratory secretions
  • Mouth care and skin care
  • Bladder and bowel care
  • Nausea and vomiting.

Many institutions have their own end of life care pathways which include clinical guidance about managing these symptoms.

  1. Von Gunten CF. Interventions to manage symptoms at the end of life. J Palliat Med. 2005;8 Suppl 1:S88-94.
  2. Higginson IJ, Finlay IG, Goodwin DM, Hood K, Edwards AG, Cook A, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003 Feb;25(2):150-68.
  3. Blakely G, Millward J. Moral dilemmas associated with the withdrawal of artificial hydration. Br J Nurs. 2007 Aug 9-Sep 12;16(15):916-9.
  4. Bryon E, Gastmans C, de Casterle BD. Decision-making about artificial feeding in end-of-life care: literature review.  J Adv Nurs. 2008 Jul;63(1):2-14. Epub 2008 Jul 1.
  5. De Graeff A, Dean M. Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards. J Palliat Med. 2007 Feb;10(1):67-85.
  6. 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 Oct;23(7):581-93. (408kb pdf)
  7. Engström J, Bruno E, Holm B, Hellzén O. Palliative sedation at end of life -- a systematic literature review. Eur J Oncol Nurs. 2007 Feb;11(1):26-35. Epub 2006 Jul 14.
  8. Claessens P, Menten J, Schotsmans P, Broeckaert B. Palliative sedation: a review of the research literature. J Pain Symptom Manage. 2008 Sep;36(3):310-33. Epub 2008 Jul 25.

Guidelines

Link to prescribing information

Overview article

Last updated 18 January 2017