Dysphagia in Palliative and End-of-Life Care: Clinical Framework

In palliative and end-of-life care settings, the goals of dysphagia management are fundamentally different from acute or rehabilitation contexts. When cure is no longer the objective, clinical decision-making shifts from maximising safety to maximising comfort, dignity and quality of life — even where this entails accepting a degree of aspiration risk.

The role of the speech-language therapist (SLT) and clinical team in palliative care is to provide patients and families with an informed framework that supports decisions about eating and artificial nutrition that align with the patient’s own values — not to make those decisions for them.

Clinical note: This guide provides a reference framework for dysphagia management in palliative care and does not constitute medical advice. Individual clinical decisions should be made jointly by the multidisciplinary team, the patient and the family.

Comfort Feeding vs Artificial Nutrition

Defining Comfort Feeding

Comfort feeding — also called pleasure feeding or eating for enjoyment — refers to an approach in which the sensory pleasure, psychological satisfaction and social meaning of eating take priority over strict safety and nutritional adequacy in patients with a limited prognosis.

Core principles of comfort feeding:

• Patients have the right to choose foods that bring them pleasure, even where those foods carry some aspiration risk
• A small amount of a favourite food — even if its texture is technically “unsafe” — may serve the patient’s overall wellbeing better than a strictly enforced IDDSI Level 4 purée
• The caregiver’s role is to optimise safety within the patient’s chosen foods, not to substitute preferred foods with “safe” alternatives against the patient’s wishes

Ethical Considerations of Artificial Nutrition

In palliative care, the balance of benefits and burdens of nasogastric tube (NGT) or percutaneous endoscopic gastrostomy (PEG) feeding requires reassessment:

Situations where tube feeding may be appropriate

• The patient’s dysphagia is potentially reversible (e.g., early post-acute stroke), with a realistic expectation of transition to oral feeding
• The patient or their proxy has clearly expressed a wish to sustain life through artificial nutrition
• The patient still has a meaningful expected quality of life, and tube feeding supports recovery

Situations where tube feeding is generally not indicated

• The natural dying process of terminal illness (appetite decline is a normal physiological phenomenon in the last stages of life)
• The patient, when cognitively intact, explicitly declined artificial life-prolonging interventions — including in a written Advance Directive
• Tube feeding cannot improve the patient’s overall comfort, or the tube feeding itself causes significant distress

Hong Kong Legal Framework: Advance Directives

Under Hong Kong’s Enduring Powers of Attorney Ordinance (Cap. 501) and relevant case law, Advance Directives are legally binding in Hong Kong. The Hospital Authority (HA) Advance Directive form includes options for:

• Refusing artificial ventilatory support
• Refusing cardiopulmonary resuscitation
• Refusing artificial nutrition (nasogastric or intravenous)

When discussing tube feeding with patients or their proxies, clinicians should confirm whether a written Advance Directive exists and ensure the relevant documents are attached to the medical record.

Advance Care Planning Discussions

What Is Advance Care Planning

Advance Care Planning (ACP) is an ongoing conversation process that helps patients reflect on and document their wishes regarding care if they lose decision-making capacity — including preferences regarding artificial nutrition, active treatment and end-of-life care setting.

ACP is not a one-time form-filling exercise; it is a dynamic process that is updated as the patient’s condition evolves.

The SLT’s Role in ACP Discussions

SLTs occupy a distinctive position in palliative care because the clinical reality of dysphagia often serves as the natural entry point for ACP conversations:

• Explaining the prognosis of dysphagia to patients and families (typical trajectory within different disease pathways)
• Describing the practical meaning of various feeding options (comfort feeding, tube feeding, intravenous hydration)
• Clarifying common misconceptions (such as “not placing a nasogastric tube means giving up on the patient”)
• Helping patients articulate their personal values (the social meaning of eating, dignity considerations)
• Representing the clinical reality of swallowing function and prognosis in multidisciplinary meetings

A Suggested Framework for Sensitive Conversations

The following framework can guide dysphagia-related ACP discussions:

1. Explore understanding: “What do you and your family currently understand about [patient name]‘s swallowing situation and overall condition?”
2. Explore values: “What matters most to [patient name] in terms of quality of life? What does eating mean to him/her?”
3. Provide information: “Based on my assessment, [patient name]‘s swallowing function is currently… We have several directions we could consider…”
4. Support decision-making: “There is no single correct answer. What matters is that this decision reflects [patient name]‘s wishes and your family’s values.”

Dignity in Eating: Practical Principles

The Core of Dignity in Eating

Dignity in eating in palliative care emphasises:

The social and emotional meaning of eating

• Sharing the table with family, using the patient’s familiar bowls and utensils
• Enabling the patient to participate in family eating rituals on important occasions (even if only a small amount)
• Avoiding over-medicalising the eating process (excessive reminders, excessive restrictions)

Autonomous choice

• Within safe limits, respect the patient’s preferences regarding food type and eating approach
• With informed consent, allow the patient to try beloved foods even where some risk is present

Caregiver attitude

• Maintain patience and positive engagement during meals; avoid communicating anxiety to the patient
• Allow the eating process to take longer than usual

Practical Recommendations for Cultural Sensitivity in Hong Kong

Cantonese cultural context

• Eating carries profound cultural significance for Cantonese families; sihk faahn (eating a meal together) is central to family connection
• Even small amounts of modified Cantonese food can provide deep comfort to a dying patient
• Common adaptations: smooth congee (sieved to remove particles), steamed fish purée, silken tofu preparations

Oral care as a comfort measure

• Even when a patient can no longer eat, regular oral care (maintaining oral moisture) remains an important comfort measure
• Frozen oral care swabs can provide sensory stimulation while relieving dry mouth

Supporting the family

• Family members often equate “making the patient eat” with expressing love; refusing food may provoke intense emotional responses
• The clinical team should help families understand that in the terminal phase, eating is no longer the primary means of sustaining life — comfort and companionship are equally meaningful expressions of care

The Hospital Authority Palliative Care Pathway

Hong Kong’s Public Hospital Palliative Care Framework

The HA palliative care service framework includes:

Inpatient palliative care wards

• Located in cluster hospitals; provide multidisciplinary palliative care
• Admission criteria typically include a prognosis of less than one year in terminal disease
• SLTs as members of the multidisciplinary team can provide consultancy on dysphagia and eating goals

Home palliative care programme (HPPS)

• The HKJC Home Palliative Care Programme (HPPS), coordinated by Prince of Wales Hospital, provides cross-disciplinary home palliative care including ACP discussions at home
• Referral through the attending physician or medical social worker

Palliative care within geriatric wards

• Hong Kong geriatric wards are increasingly integrating palliative care principles
• The geriatrician–SLT collaboration is an important context for ACP discussions involving dysphagia patients

SLT Integration with the HA Palliative Care Pathway

• Acute phase: assess swallowing function, provide IDDSI level recommendations, participate in multidisciplinary discussions about dysphagia prognosis
• At palliative care referral: provide recommendations for shifting eating goals, support ACP conversations
• Home or care home phase: provide comfort feeding guidance for caregivers, periodic reassessment of swallowing function for changes

Frequently Asked Questions (Palliative Care Clinical Scenarios)

Q: A family insists on NGT insertion for a terminal patient who previously expressed a wish to refuse artificial life-prolonging interventions. How should this be managed?

This is among the most common ethical conflicts in palliative care. The approach includes: (1) confirm whether a written Advance Directive exists — if so, explain its legal standing to the family; (2) convene a multidisciplinary family conference attended by the attending physician, SLT and medical social worker to provide clinical information and explore the family’s concerns; (3) explore the underlying motivation for the family’s insistence (guilt, fear of “abandoning” the patient) and address these through emotional support and psychoeducation. Ethics committee consultation is also an available resource in complex cases.

Q: A patient in palliative care has occasional aspiration events. Must the IDDSI level still be strictly enforced?

Within a palliative care framework, IDDSI levels serve as guidance rather than mandatory constraint. Clinical decision-making should prioritise the patient’s overall comfort and autonomous choice. Where the patient remains conscious and expresses a wish to eat certain foods, informed consent may allow the patient to eat at a level of accepted risk that reflects their values. The SLT’s role is to provide honest risk assessment — not to make the decision for the patient.

Q: A patient has entered the imminently dying phase (days to weeks). Is SLT involvement still relevant?

In the imminently dying phase, the SLT role transitions from “assessment and treatment” to “support and consultancy.” Key tasks include: helping caregivers recognise when stopping oral feeding is appropriate (rather than continuing force-feeding); providing oral hygiene guidance as a comfort measure; supporting family members in coping with the patient no longer eating; and contributing swallowing function information to multidisciplinary discussions.

Hong Kong Resources

• Hospital Authority palliative care services: referral and service information — ha.org.hk
• HKSLTA: SLT referral — hkslta.org.hk
• HKJC Home Palliative Care Programme (HPPS): home palliative care — ha.org.hk
• Hong Kong Anti-Cancer Society: palliative care resources for cancer patients — hkacs.org.hk
• Hong Kong Psychogeriatric Association: dementia and elderly palliative care guidance — hkpog.org

Information is updated periodically to reflect the latest clinical guidance and Hong Kong regulatory developments. For enquiries, contact [email protected].