Nutritional Considerations of Palliative Care in Rare Disease

Diet and Nutrition in Palliative Care ◽

10.1201/b10936-39 ◽

2011 ◽

pp. 391-400

Author(s):

Luca Dughera ◽

Paola Cassolino ◽

Michele Chiaverina ◽

Fabio Cisarò

Keyword(s):

Palliative Care ◽

Rare Disease

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Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease

PEDIATRICS ◽

10.1542/peds.2017-3417 ◽

2018 ◽

Vol 141 (6) ◽

pp. e20173417 ◽

Cited By ~ 2

Author(s):

Christina Vadeboncoeur ◽

Mindy McHardy

Keyword(s):

Palliative Care ◽

Rare Disease ◽

Pediatric Palliative Care ◽

Early Referral

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Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

American Journal of Speech-Language Pathology ◽

10.1044/2019_ajslp-18-0207 ◽

2019 ◽

Vol 28 (3) ◽

pp. 1356-1362

Author(s):

Laurence Tan Lean Chin ◽

Yu Jun Lim ◽

Wan Ling Choo

Keyword(s):

Palliative Care ◽

End Of Life ◽

Multidisciplinary Team ◽

Biopsychosocial Model ◽

Family Members ◽

Clinical Decisions ◽

Goals Of Care ◽

Complex Needs ◽

Aspiration Risk ◽

Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

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