Advanced Dementia, Feeding Tubes, and Goals of Care

Topic: Strategic Quality Improvement

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The inpatient interdisciplinary Palliative Care team identified the issue of feeding tube placement in Advanced Dementia patients as a cause for ethical distress in families as well as the healthcare team. The Advocate Palliative Care Team in collaboration with Speech Therapy Team initiated a quality assurance study from this data.

The targeted population for this study was identified as patients diagnosed with Advanced Dementia confirmed to have severe dysphagia. The confirmation of severe dysphagia was diagnosed via Videofluoroscopic Swallowing Study (VFSS) and alternative nutrition had been recommended for these patients.

The Palliative Care Interdisciplinary team, in conjunction with the Speech Therapy (ST) noted that this targeted population was having Percutaneous Endoscopic Gastrostomy tubes (PEG) inserted without a Palliative Care (PC) consult to address goals of care (GOC) with their healthcare surrogate decision maker. Review of current literature reported that PEG tubes are not therapeutically indicated for the patient with Advanced Dementia. A New England Journal of Medicine editorial from 2000 concluded that PEG tubes “are generally ineffective in prolonging life, preventing aspiration, or providing adequate nourishment in patients with advanced dementia”.

The research team retrospectively collected data to determine if a PC consult had been ordered to assist with a GOC discussion. A work flow was developed to hard wire a process to ensure the Speech Therapists contacted the Primary Care Physicians (PCP) to obtain an order for PC consult prior to consulting Gastroenterology (GI) . Retrospective data showed that 14% of the STs were already contacting the PCP prior to the process initiation. The study target goal for ST contacting the PCP to obtain the PC order was set at 30%. The actual outcome was 92%.

The second metric measured the percentage of PC consults ordered for the targeted population. Retrospective data indicated 42% of consults were ordered prior to intervention. Target result was set at 85% post-implementation with the final result of 100% of identified patients received a PC consult.

This study discovered a statistically significant positive consequence of the PC consult GOC discussion resulting in the following:

Prior to the intervention, only 14% of the targeted population resulted in the STs contacting the PCP for PC consult with 100% of the targeted population having had short term and/or long term feeding tubes placed.

Post implementation 100% of the targeted population had PC consult GOC discussions with only 14% having PEG tubes placed and 85% choosing not to have short or long term feeding tubes placed.

The data validated the daily practice the Palliative Care team experiences. Some positive observations noted post implementation are:

· PCP began postponing consulting GI specialists and/or the GI specialists delayed their discussions with patient’s decision makers until after the GOC discussion had occurred with PC team.

· Families reported feeling increased support with consistent messages from healthcare providers.

· Reduced moral distress noted in families/substitute decision makers and in healthcare providers.

· STs reported feeling empowered to start discussions with families regarding alternative strategies and obtain PC consults from PCPs.


  • Naomi Howland, BSN
  • Palliative Care RN
  • Advocate Good Samaritan Hospital
  • 3815 Highland Ave
  • Downers Grove, IL 60515
  • (630) 275-1911


  • Angela Coats, RN, BSN, CHPN
  • Anna Lee Hisey Pierson, M.Div., BCC-HPCC
  • Julie Rudolph, RN, BSN, MBA, CHPN
  • Karen Gibboney, RN, BSN, CHPN
  • Kimberly Battle-Miller, MD, MS, MBA
  • Teri Sycks, MS, CCC-SLP

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