Case Report: Transition to Comfort Care and Hospice – Terminal Outcome in a 61-Year-Old Patient with Amyloidosis.
Table of Contents
Introduction
Systemic amyloidosis is a difficult and disabling disease caused by the accumulation of misfolded amyloid proteins in various organs. In spite of progress in the diagnosis and supportive treatment, several patients evolve to multi-organ dysfunction where curative or disease-modifying therapies are minimal.
This case report is centered on the terminal phase of a 61-year-old patient with primary (AL) amyloidosis, whose clinical course worsened despite treatment, eventually necessitating transition to comfort care and hospice. This article not only narrates the clinical findings but also emphasizes the value of palliative care in patients with systemic diseases that cause important diminution of quality of life and survival.
Patient Summary
*
- Age and Demographics: 61-year-old African-American male
- Primary Diagnosis: AL (primary) amyloidosis diagnosed by biopsy and mass spectrometry
- Clinical Course: Initial symptoms were abdominal distension, lower extremity edema, ascites, nephrotic-range proteinuria, and abnormal liver function tests.
- Disease Progression: Supportive care and explorations for transplant in spite of these interventions made curative treatment inappropriate due to multi-organ involvement.
- Final Outcome: Transferred to comfort care, discharged with hospice services, and passed away one week after discharge.
Clinical Journey Toward End-of-Life Care
Initial Symptoms and Diagnosis
The patient initially presented with subacute lower extremity and abdominal swelling. Workup identified abnormal liver function tests, hypoalbuminemia, nephrotic-range proteinuria, and echocardiogram findings in favor of infiltrative cardiomyopathy. Amyloidosis was confirmed by colon biopsy, which was supported further by mass spectrometry.
Disease Progression
His condition progressed over several weeks:
- Liver function progressively declined with total bilirubin increasing from 0.5 mg/dL to 21.6 mg/dL.
- Increased MELD score from 14 to 29, indicating advancing liver dysfunction.
- Decreased renal function, in keeping with progressive systemic amyloidosis.
Consideration of Liver Transplant
While transplantation was entertained, the patient was not listed because of multi-organ amyloid involvement, and thus surgical results were poor.
Transition to Comfort Care
Why Comfort Care Was Chosen
When disease-altering measures were no longer an option and organ dysfunction progressed, the patient, family, and clinical team decided to concentrate on palliative and comfort-focused care.
This was under the guidance of:
- Minimal survival advantage from intensive therapy
- Poor prognosis with multi-organ amyloidosis
- Goals from the patient and family centered on dignity, alleviation of suffering, and quality of life
Hospice Role in Amyloidosis
Hospice care ensured:
- Symptom management (ascites, jaundice, fatigue, pain relief)
- Emotional and psychological care of the patient and family
- Dignified, compassionate care in the end-of-life phase
Clinical Insights
- Systemic Amyloidosis is Often Progressive: Despite modern diagnostics and supportive therapy, organ failure can be inevitable in AL amyloidosis.
- Transplant Decisions Require Holistic Evaluation: Although transplantation can be an option, multi-organ involvement usually rules this out.
- Palliative Care is Necessary: Timely incorporation of palliative teams may enhance symptom management, decision-making, and family/patient satisfaction.
- Hospice Transfer Should Be Planned with Compassion: Effective communication and support enable patients to have dignity and comfort in their last days of life.
Broader Implications for Care
- For Clinicians: This case emphasizes the need for weighing aggressive interventions against realistic goals in systemic amyloidosis.
- For Patients and Families: Preparing for advanced care planning is facilitated through knowledge of disease trajectory.
- For Healthcare Systems: There is an increasing necessity to incorporate palliative and hospice services into care pathways for diseases with poor prognostics at the systemic level. ## Conclusion
The experience of this 61-year-old man with primary amyloidosis illustrates the natural history of increasing multi-organ involvement, the difficulty in treatment of systemic disease, and the significance of palliative and hospice care in maintaining dignity at the end of life.
Although investigation and treatments continue to improve, clinicians should be ready to support patients and families as they navigate difficult choices when curative interventions are not available.
