End-of-Life Outcome – Transition to Comfort Care and Hospice

Case Report: End-of-Life Outcome – Transition to Comfort Care and Hospice in a 61-Year-Old Patient with Amyloidosis

Introduction

Systemic amyloidosis is an uncommon and progressive condition that is defined by abnormal deposition of misfolded amyloid proteins in various organs. Despite improvements in diagnosis and treatment, most patients eventually develop multi-organ failure, where curative or disease-modifying treatments are no longer an option.

This case highlights the terminal outcome of a 61-year-old AL (primary) amyloidosis patient, who was switched to comfort care and hospice, highlighting the importance of palliative care in preserving dignity and quality of life in the terminal phase of systemic illness.

Patient Summary

• Age and Ethnicity: 61-year-old African-American male
• Diagnosis: AL amyloidosis diagnosed by colon biopsy and mass spectrometry
• Clinical Course:
• Initial presentation with abdominal distension, lower limb edema, ascites, and nephrotic-range proteinuria
• Worsening hepatic dysfunction with increasing MELD score from 14 to 29
• Progression of renal function and cardiac (LV hypertrophy) involvement
• Listed for liver transplantation, but not listed because of multi-organ involvement
• Final Outcome: Moved to comfort care and hospice; passed away one week after discharge

Clinical Course to Comfort Care

Progressive Involvement of Organs

During hospitalization:

• Hepatic decompensation: Total bilirubin rose from 0.5 mg/dL to 21.6 mg/dL; AP, AST, and ALT significantly elevated
• Renal impairment: Creatinine gradually rose; persistent nephrotic-range proteinuria
• Cardiac involvement: Left ventricular hypertrophy suggesting infiltrative disease
  These findings suggested accelerated systemic decompensation, making curative measures, including liver transplant, unsafe.

Decision for Comfort Care

In light of the unfavorable prognosis and risk of morbidity from aggressive treatment, the multidisciplinary team, in collaboration with patient and family, made the decision to switch to comfort-oriented care.

Key considerations:

• Multi-organ amyloid involvement precluding benefit from transplantation or chemotherapy
• Risk of complications due to repeated hospitalization high
• Focus on quality of life, symptom management, and dignity

Hospice Care and Palliative Management

Objectives of Hospice

• Management of symptoms: Pain control, comfort from ascites, pruritus related to jaundice, fatigue
• Psychosocial care: Patient and family emotional support, counseling, and counseling guidance
• End-of-life care planning: Advance care planning and facilitation of a peaceful, dignified death

Hospice Transition Outcomes

• Enabled the patient to spend his last days in a caring, empathetic setting
• Was comfort-oriented, not life-prolonging, which is consistent with patient-centered care ideals
• Provided family presence and support in the terminal phase

Clinical and Ethical Insights

Lessons Learned

1. End-of-life planning is essential in systemic amyloidosis because of unpredictable course and multi-organ involvement.
2. Early integration of palliative care enhances symptom management and patient/family satisfaction.
3. Multidisciplinary decision-making is necessary to weigh aggressive interventions against achievable outcomes.
4. Hospice care gives dignity and comfort, with quality of life stressed over curative intent in terminal systemic illness.

Broader Implications

• Patients with amyloidosis have a tendency towards rapid deterioration despite medical therapy.
• Medical providers need to have clear communication of prognosis and advance care planning.
• Policies need to promote early referral to palliative and hospice care for patients with terminal multi-organ disease.

Conclusion

The 61-year-old patient with systemic AL amyloidosis illustrated the profound effect of multi-organ involvement, culminating in progressive hepatic, renal, and cardiac impairment. In spite of consideration for aggressive interventions, the patient was eventually transitioned to comfort care and hospice, in which he expired one week following discharge.

This case supports the necessity of:

• Appreciation of the time to discontinue disease-modifying therapies
• Incorporating palliative care at an earlier time
• Patient comfort and dignity as top priorities in terminal systemic diseases
  Finally, the report reiterates that end-of-life care for amyloidosis should emphasize quality of life, symptom management, and empathetic care.