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A Pilot Study Exploring the Factors that Influence the Decision to have PEG Feeding in Patients with Progressive Conditions

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Abstract

This original pilot study was conducted to explore and understand the factors that influence a patient’s decision-making when considering percutaneous endoscopic gastrostomy placement for nonoral nutrition and hydration supplementation. Seven patients living with progressive dysphagic symptoms who had made a decision about percutaneous endoscopic gastrostomy placement were interviewed and their responses analyzed using the constant comparison method. All participants felt they had no option other than to accept the percutaneous endoscopic gastrostomy. The impact of visible physical deterioration and medical opinion were the most powerful influences on patients’ decisions. Patients’ perception of their involvement in the decision varied. This was linked to the amount and timing of information supplied and support they felt they received. Few patients have prior knowledge of tube feeding and rely heavily on medical advice. Effective communication by healthcare professionals can promote an environment that is supportive of patients’ involvement in decisions. Adequate preparation time is vital if patients are to stop feeling uninvolved or peripheral to the decision-making process. Multidisciplinary teams need to address their working practices so that they do not intimidate patients, but rather empower patients in their decision-making.

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Acknowledgments

Special thanks go to the patients and carers who participated in the study and to the Nutritional Nurse Specialist.

Author information

Authors and Affiliations

  1. Speech and Language Therapy Department, Trafford PCT, Trafford General Hospital, Moorside Road, Davyhulme, Manchester, M41 5SL, UK

    Siobhan Vesey

  2. Department of Communication Science and Disorders, University of Pittsburgh, 4033 Forbes Tower, Pittsburgh, PA, 15260, USA

    Paula Leslie

  3. Institute of Health and Society, University of Newcastle upon Tyne, 21, Claremont Place, Newcastle upon Tyne, NE2 4AA, England

    Catherine Exley

Authors
  1. Siobhan Vesey
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  2. Paula Leslie
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  3. Catherine Exley
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Corresponding author

Correspondence to Siobhan Vesey.

Appendix

Appendix

The interview is semistructured, following broad themes but exact wording and ordering can be altered to facilitate the best flow of information. The questions in italics are suggested as prompts to further explore a topic.

How Do Patients Make a Decision About PEG Placement?

Interview Schedule

Time: approx. 60 min

Introduction and Thanks for Participation

Section A: Background

  • 1. Tell me about your swallowing difficulties:

    • How long have you had problems?

    • Was it a gradual or sudden onset?

    • Can you eat anything at all?

    • How did you feel when the problems began?

    • How would you describe the effects on your life?

Section B: Information

  • 2. Who has been involved in the treatment of your swallowing difficulties?

    • Did you see your GP/SaLT/Specialist Doctor?

    • Were you given information about the problems?

    • Who gave you the information?

    • Do you feel you understood the nature of your difficulties?

    • Do you think you had enough information/would you have liked more?

    • Did you feel able to ask questions?

  • 3. Who first mentioned the idea of a feeding tube to you?

    • Do you remember who first told you about tube feeding?

    • Did you understand the term?

    • Had you heard the term before?

    • Do you feel it was explained well?

    • Did you understand what it would involve?

    • How did you feel when it was mentioned to you?

Section C: Values

  • 4. What did you consider when you made your decision to go ahead or decline the PEG placement?

    • Did you have strong feelings about alternative feeding?

    • How did you feel when it was mentioned to you?

    • Were your religious beliefs/social values important?

    • Your overall health?

    • Your thoughts and hopes for the future?

Section D: Outside Pressures

  • 5. Tell me what your family/friends thought about the idea.

    • Did you ask their opinions?

    • Were their opinions important to you?

    • Did they influence the decision you made?

    • What about your doctor?

    • Did you feel the doctors or medical team had a strong opinion about the feeding tube?

    • Did they suggest that you should go ahead or not?

    • Did their opinions feel important to you?

    • Did this have an impact on your thoughts /decisions?

Section E: Support

  • 6. Was it a difficult decision to make?

    • Did you take a long time to consider?

    • Were you given time to consider your decision?

    • Did you ask for help in making your decision?

    • Whose opinion did you value most?

    • Did you feel well supported in making the decision?

Section F: Reflection

  • 7. Do you remember much about the procedure?

    • Was there much pain/discomfort?

    • Did that last long?

    • Were you prepared for that?

  • 8. Are you happy with the decision that you made?

    • Was it the right choice for you?

    • Did it turn out the way you expected?

    • Would you make the same choices again?

    • What would you advise others in the same situation?

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Vesey, S., Leslie, P. & Exley, C. A Pilot Study Exploring the Factors that Influence the Decision to have PEG Feeding in Patients with Progressive Conditions. Dysphagia 23, 310–316 (2008). https://doi.org/10.1007/s00455-008-9149-0

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  • DOI: https://doi.org/10.1007/s00455-008-9149-0

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