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Management of Subcutaneous Infusions in Palliative Care

Section 5: Patient and Family Education

Learning Objectives
Strategies for Providing Effective Education and Support
Explanation, demonstration and practice
Written information
Topics for Education
Information about the device
Daily Living
Medications
Drug Storage and safety
Carer Support
Links
Activity
Quiz
References

Careful explanation and education about what the device will do, its advantages and possible disadvantages, as well as a 24-hour support number, is required for patients with subcutaneous infusion devices and their families.1 When health professionals provide education to patients and family it promotes safety and acceptance of the infusion device as a way to provide improved symptom control.2 Good, well timed information can prepare the family for the role they are taking on, minimising potential adverse consequences.3

The caring@home project site8 provides resources to support people to be able to be cared for at home, including training for carers and health professional education.

Learning Objectives

At the completion of this section, you should be able to:

  • outline key elements of patient/family education to promote safe use of subcutaneous infusion devices by patient and family;
  • describe strategies to support patient/family decision making regarding symptom management.

Strategies for Providing Effective Education and Support

The patient and family should be given verbal and practical guidance about living with a subcutaneous infusion device. Health professionals should be mindful that information and education given when the patient is unwell and the family/carer is anxious may need to be repeated and reinforced.

Explanation, demonstration and practice should:

  • be simple and focus on needed motor skills e.g. changing the battery;
  • be repeated as needed;
  • reassure and assist the patient and family to manage the device.

Written information should:

  • be clear and understandable;
  • include information about management of common issues with the device in use;
  • include what to do if the device alarms;
  • include how to contact a knowledgeable health practitioner out of hours.

Topics for Education

Information about the device

Subcutaneous infusion devices are very reliable. It is important the patient and family/carer are informed about indicators of normal device functioning such as a ‘whirring’ noise, a small flashing light or a screen with arrows running across it.

The patient and/or family/carer should be encouraged to check the device regularly to ensure it is functioning normally, but they should also be encouraged not to worry about checking it overnight.

The patient and family/carer should be reassured that if they believe something is wrong with the infusion device or if the alarm sounds, it is likely to be a problem that is easily rectified. For these devices it is important the patient and family/carer are confident in their ability to manage simple issues that may arise in the normal functioning of the device.

Daily Living

The patient and family should be encouraged and guided in ways to incorporate the subcutaneous infusion device into everyday life. These devices are designed to make the patient’s life more comfortable and to be able to continue with daily routines.

  • the patient may shower or bathe as normal;
  • instruction and clear written information regarding disconnection from the infusion device for showering, and reconnection afterwards, should be given by the health professional. The period of disconnection should be as brief as possible;
  • patients and family/carers should be given information about general care of the device to allay fears of dropping or damaging it4;
  • the patient should be provided with a bag or encouraged to purchase a belt bag to conceal and carry the infusion device;
  • a locked box or perspex cover should be provided as patients and family have reported feelings of insecurity and concern about robustness of the device.

Medications

Patients and family should be informed there may be a change in the patient’s level of alertness as a consequence of administering some medications subcutaneously. They should be reassured the response is generally transitory, dependent on the general condition of the patient, and the drugs can be titrated appropriately if it remains a problem after a few days. The patient and carer should be given clear instructions about management of breakthrough pain or other symptoms and be reassured about use of medications on those occasions.5 Breakthrough medication is defined as extra medication that may be required for symptoms not controlled by medications prescribed for continuous delivery.

Drug Storage and safety

The patient and family/carer should be advised about appropriate safety and storage measures for medications including information about the supply to be held in the home, safe storage in a locked cupboard if appropriate, as well as temperature and moisture control.

Carer Support

Education and information concerning the provision of care at home has been recognised as emotionally beneficial for family/carers6, reducing the risk of carer anxiety and stress. The family may describe additional concerns as the patient’s condition changes and they are called upon to make proxy decisions about symptoms and breakthrough medications. The family should be provided with appropriate information about adjustments to care as the patient’s condition changes and be reassured about their capability to make proxy decisions and continue providing care. Equally they should be reassured that if they can no longer care for the patient with a subcutaneous infusion device, they will be assisted in seeking out a care alternative.

Simple information strategies such as written guidance, supervised practice and professional contact when needed can decrease the family’s anxiety, reduce the chances of forgetting information, and may contribute to a lower incidence of problems.7 Good information will assist the family to be confident in decision making, maintain the patient’s comfort and have a positive experience of care.

The caring@home project site includes training for carers and health professional education.

Links

Activity

  • Review your organisation’s written instructions/guidelines/information for patients and family/carers.

    Are there written instructions/guidelines/information about subcutaneous infusion devices?
    Does the information provide practical advice able to be understood by non-clinicians?
  • Discuss the experience of having a subcutaneous infusion device with a patient and carer. Ask about adjustments they may have made in their life and what meaning they attach to having the device.

Quiz

  • This quiz will test objectives and content in Section 5 of the Learning Package and the ‘Guidelines for subcutaneous infusion device management in palliative care’ document.

References

  1. PalliativeDrugs.com. Document Library: Syringe Drivers. <www.palliativedrugs.com>. Accessed 25 September 2017.
  2. Morgan S, Evans N. A small observational study of the longevity of syringe driver sites in palliative care. International Journal of Palliative Nursing 2004;10(8):405-412.
  3. Yates et al. 2004 in Cruikshank S, Adamson E, Logan J, Brackenridge K. Using syringe drivers in palliative care within a rural, community setting: capturing the whole experience. International Journal of Palliative Nursing 2010;16(3):126-132.
  4. Fletcher C. Report on comparative evaluation of Graseby syringe driver replacements. Auckland, NZ: North Shore Hospice Trust;2009.
  5. Lloyd-Williams M, Rashid A. An analysis of calls to an out-of-hours palliative care advice line. Public Health 2003;117(2):125.
  6. Centre for Palliative Care Research and Education. Guidelines for subcutaneous infusion device management in palliative care (Revised Edition). Brisbane, Queensland: Queensland Health;2010.
  7. Driscoll A. Managing post discharge care at home: an analysis of patients’ and their carer’s perceptions of information received during their stay in hospital. Journal of Advanced Nursing 2000;31(5):1165-1173.
  8. caring@home: Symptom management for palliative patients. Brisbane South Palliative Care Collaborative. https://www.caringathomeproject.com.au/tabid/4877/Default.aspx . Accessed 8 January 2020.

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Last updated: 8 January 2020