From the Guidelines
Yes, a person with Multiple System Atrophy (MSA) on a feeding tube can be considered for hospice care and can refuse tube feedings. Hospice eligibility for MSA patients typically requires documentation of advanced disease with features like rapid progression, severe autonomic dysfunction, significant nutritional decline, or life-threatening complications, as stated in 1. The need for a feeding tube often indicates disease progression that may meet hospice criteria. Patients have the legal and ethical right to refuse any medical treatment, including artificial nutrition through feeding tubes, as part of their autonomy in end-of-life decisions, as supported by 1 and 1. This decision should be documented through advance directives like a living will or healthcare power of attorney.
When considering the decision to refuse tube feedings, it's essential to focus on the patient's quality of life and comfort. According to 1, the term "comfort feeding" can be used to describe an individualized feeding care plan that prioritizes the patient's comfort and well-being. The decision to discontinue artificial feeding should be made with careful consideration of the patient's wishes, values, and best interests.
In the context of hospice care, the focus shifts from curative treatments to comfort measures. As stated in 1, patients often lose the desire to eat or drink at the end of life, and refusing nutrition is a natural part of the dying process that doesn't cause suffering when managed properly. The hospice team, including physicians, nurses, social workers, and chaplains, will provide support to both the patient and family throughout this process, ensuring that the patient's comfort and dignity are prioritized.
Key considerations for patients with MSA on a feeding tube who are considering hospice care and refusing tube feedings include:
- Documentation of advanced disease and hospice eligibility
- Patient autonomy and informed decision-making
- Focus on comfort measures and quality of life
- Support from the hospice team for the patient and family
- Respect for the patient's wishes and values regarding end-of-life care, as emphasized in 1 and 1.
From the Research
Eligibility for Hospice Care
- A person with Multiple System Atrophy (MSA) on a feeding tube can be considered for hospice care, as MSA is a terminal illness with no cure 2, 3.
- Hospice care focuses on providing comfort and managing symptoms, rather than treating the underlying disease 3.
Refusing Tube Feedings
- Patients with MSA or other advanced illnesses may refuse tube feedings as part of their palliative care plan 4, 5.
- The decision to refuse tube feedings should be made in accordance with the patient's advance directives, previously stated wishes, or what is thought the individual would want 5.
- Studies have shown that careful hand feeding can be as effective as tube feeding for patients with advanced dementia or other terminal illnesses, and may be associated with fewer complications and improved comfort 4, 5.
Palliative Care Considerations
- Palliative care discussions should be initiated early in the course of MSA, to address symptoms, prognosis, and goals of care 2, 3.
- The use of enteral nutrition by nasogastric tube in adult patients under palliative care may have varying effects on wellbeing and quality of life, and decision making should be individualized 6.
- Institutions should promote choice, endorse shared and informed decision-making, and honor preferences regarding tube feeding and other aspects of palliative care 5.