Understanding the Terminal Diagnosis List for Hospice Eligibility

Navigating the complexities of hospice care eligibility can be challenging, especially when understanding the criteria for terminal diagnosis. This article serves as a comprehensive guide to understanding the Terminal Diagnosis List, essential for healthcare professionals involved in end-of-life care. We will explore the general guidelines and disease-specific criteria that determine hospice eligibility, ensuring patients receive the compassionate care they deserve in their final months.

General Guidelines for Terminal Diagnosis

To certify a patient for hospice care, documentation must unequivocally support their terminal status. This necessitates providing sufficient information that clearly demonstrates the patient meets the criteria for a life expectancy of six months or less. Referencing the specific indications outlined in this policy is crucial for meeting this requirement. If clinical indicators outside of this policy, such as psychological or spiritual factors, contribute to the terminal status certification, these must also be thoroughly documented.

Recertification for hospice care adheres to the same rigorous clinical standards as the initial certification. However, it isn’t necessary to reiterate previously documented information. Instead, previous documentation can be referenced to support the indication for recertification. It is critical to note the guidelines regarding patients who show improvement or stabilization, as outlined in the ‘General Indications’ section under “Indications and Limitations of Coverage and/or Medical Necessity.”

The documentation should vividly “paint a picture” for reviewers, clearly illustrating why hospice care is appropriate for the patient and justifying the level of care being provided – whether it’s routine home care, continuous home care, inpatient respite care, or general inpatient care. Records should emphasize objective observations and data, rather than mere conclusions. While thoroughness is essential, documentation expectations should align with standard clinical documentation practices. Unless specific elements in the record necessitate clarification, such as a non-morbid diagnosis or indicators suggesting a survival prognosis exceeding six months, no supplementary record entries should be required to demonstrate hospice benefit eligibility.

The depth and volume of documentation will naturally vary depending on individual patient situations. For example, a patient with metastatic small cell carcinoma may require less extensive documentation to establish hospice eligibility compared to a patient with chronic lung disease. While these scenarios are relatively straightforward, patients with conditions like chronic lung disease, those experiencing extended hospice care, or patients exhibiting apparent stability can still qualify for hospice benefits. In such cases, the record must contain sufficient justification for a prognosis of less than six months.

Any documentation that presents findings inconsistent with or seemingly disproving a prognosis of less than six months must be addressed and clarified with supporting entries. Many factors suggesting a longer prognosis are often predictable, such as extended hospice stays or diagnoses not immediately associated with high mortality. However, specific entries, like a team member’s differing opinion or improvement in Activities of Daily Living (ADLs) that were initially used to determine eligibility, require further explanation. Furthermore, the absence of certain documentation elements, such as a tissue diagnosis for cancer, does not automatically disqualify hospice benefit eligibility but necessitates additional supportive documentation.

Submitted documentation may include relevant information from periods outside the current billing review timeframe. Crucial supporting events, such as changes in ADL levels, recent hospitalizations, and, if applicable, the known date of death (especially for billing periods prior to the death), should be included.

Documentation must also substantiate the level of care provided throughout the review period, be it routine, continuous home, inpatient, respite, or general inpatient care. Reviewers should be able to easily identify the dates and times of any changes in care levels and the reasons behind these changes.

Furthermore, all documentation must adhere to the requirements outlined in CMS IOM 100-02 Chapter 9 Section 20.

Disease-Specific Guidelines: Terminal Diagnosis List Breakdown

These disease-specific guidelines are to be used in conjunction with the “Non-disease specific baseline guidelines” to further clarify the terminal diagnosis list.

Section I: Cancer Diagnoses

For cancer diagnoses, patients may be considered terminally ill if they present with:

A. Disease with distant metastases at initial presentation; OR

B. Progression from an earlier stage to metastatic disease with either:

Continued decline despite ongoing therapy.
Patient’s decision to decline further disease-directed therapy.

Note: Certain cancers known for their poor prognoses, such as small cell lung cancer, brain cancer, and pancreatic cancer, may qualify for hospice eligibility even without meeting the criteria listed above in this section.

Section II: Non-Cancer Diagnoses

A. Amyotrophic Lateral Sclerosis (ALS)

General Considerations for ALS in Terminal Diagnosis:

ALS progression is typically linear and relatively predictable in individual patients.
No single symptom deteriorates uniformly across all patients, requiring a multi-faceted clinical assessment.
While ALS often starts localized, the initial presentation site does not correlate with survival time. End-stage ALS involves widespread muscle denervation.
Disease progression varies significantly among individuals, necessitating a review of each patient’s progression history for prognosis.
In end-stage ALS, breathing ability and, to a lesser extent, swallowing ability are critical prognostic factors. Ventilation and artificial feeding can manage these but significantly impact the six-month prognosis.
Neurological examination within three months of hospice assessment is recommended to confirm diagnosis and aid prognosis.

Criteria for Terminal Stage ALS (Must meet 1, 2, or 3):

Critically Impaired Breathing Capacity: Evidenced by all of the following within the 12 months prior to hospice certification:
1. Vital Capacity (VC) less than 30% of normal (if available).
2. Dyspnea at rest.
3. Patient declines mechanical ventilation (external ventilation for comfort only).
Rapid ALS Progression and Critical Nutritional Impairment:
1. Rapid Progression: Demonstrated by all of the following within 12 months:
  1. Progression from independent ambulation to wheelchair to bed-bound status.
  2. Progression from normal speech to barely intelligible or unintelligible speech.
  3. Progression from normal diet to pureed diet.
  4. Progression from independence to needing major assistance in all ADLs.
2. Critical Nutritional Impairment: Demonstrated by all of the following within 12 months:
  1. Insufficient oral intake to sustain life.
  2. Continuing weight loss.
  3. Dehydration or hypovolemia.
  4. Absence of artificial feeding intended to sustain life (feeding for hunger relief is acceptable).
Rapid ALS Progression and Life-Threatening Complications:
1. Rapid Progression: See criteria 2.a above.
2. Life-Threatening Complications: Demonstrated by one of the following within 12 months:
  1. Recurrent aspiration pneumonia (with or without tube feedings).
  2. Upper urinary tract infection (e.g., pyelonephritis).
  3. Sepsis.
  4. Recurrent fever despite antibiotic therapy.
  5. Stage 3 or 4 decubitus ulcer(s).

B. Dementia due to Alzheimer’s Disease and Related Disorders

Criteria for Terminal Stage Dementia (All criteria must be met):

Patients with dementia due to Alzheimer’s and related disorders must exhibit all of the following:

Stage seven or beyond on the Functional Assessment Staging Scale (FAST).
Inability to ambulate without assistance.
Inability to dress without assistance.
Inability to bathe without assistance.
Urinary and fecal incontinence (intermittent or constant).
No consistently meaningful verbal communication (stereotypical phrases only or limited to six or fewer intelligible words).

And have experienced one of the following within the past 12 months:

Aspiration pneumonia.
Pyelonephritis or other upper urinary tract infection.
Septicemia.
Multiple stage 3-4 decubitus ulcers.
Recurrent fever after antibiotics.
Inability to maintain sufficient fluid and calorie intake with 10% weight loss in the previous six months or serum albumin <2.5 gm/dl.

Note: This section is specific to Alzheimer’s Disease and related disorders and is not applicable to other forms of dementia like multi-infarct dementia.

C. Heart Disease

Criteria for Terminal Stage Heart Disease (Criteria 1 and 2 must be present; factors from 3 provide supporting documentation):

Optimal Treatment or Non-Candidacy/Declination of Procedures: At the time of hospice certification or recertification, the patient is optimally treated for heart disease or is not a candidate for surgery, or has declined surgical procedures. (Optimal treatment includes a documented medical reason for refusing vasodilators, e.g., hypotension or renal disease, if not prescribed.)
NYHA Class IV Heart Disease: Patient classified as New York Heart Association (NYHA) Class IV, possibly with significant heart failure or angina at rest. (Class IV indicates inability to perform any physical activity without discomfort; symptoms may be present even at rest, and discomfort increases with any activity.) An ejection fraction of ≤20% can document significant congestive heart failure but is not required if not already available.
Supporting Documentation Factors: Documentation of the following factors will support, but is not required for, hospice eligibility:
1. Treatment-resistant symptomatic supraventricular or ventricular arrhythmias.
2. History of cardiac arrest or resuscitation.
3. History of unexplained syncope.
4. Brain embolism of cardiac origin.
5. Co-existing HIV disease.

D. HIV Disease

Criteria for Terminal Stage HIV Disease (Criteria 1 and 2 must be present; factors from 3 provide supporting documentation):

Low CD4+ Count and Viral Load with Complications: CD4+ Count <25 cells/µL or Viral Load >100,000 copies/ml, plus one of the following:
1. CNS lymphoma.
2. Untreated or persistent wasting syndrome (loss of at least 10% lean body mass).
3. Mycobacterium avium complex (MAC) bacteremia (untreated, unresponsive, or treatment refused).
4. Progressive multifocal leukoencephalopathy (PML).
5. Systemic lymphoma with advanced HIV and partial chemotherapy response.
6. Visceral Kaposi’s sarcoma unresponsive to therapy.
7. Renal failure without dialysis.
8. Cryptosporidium infection.
9. Toxoplasmosis unresponsive to therapy.
Decreased Performance Status: Karnofsky Performance Status (KPS) scale score of ≤50%.
Supporting Documentation Factors: Documentation of the following will support hospice eligibility:
1. Chronic persistent diarrhea for one year.
2. Persistent serum albumin <2.5 gm/dl.
3. Co-existing active substance abuse.
4. Age >50 years.
5. Absence of or resistance to effective antiretroviral, chemotherapeutic, and prophylactic drug therapy related to HIV.
6. Advanced AIDS dementia complex.
7. Toxoplasmosis.
8. Symptomatic congestive heart failure at rest.
9. Advanced liver disease.

E. Liver Disease

Criteria for Terminal Stage Liver Disease (Criteria 1 and 2 must be present; factors from 3 provide supporting documentation):

Impaired Liver Function: Patient must exhibit both:
1. Prothrombin time prolonged more than 5 seconds over control, or International Normalized Ratio (INR) >1.5.
2. Serum albumin <2.5 gm/dl.
End-Stage Liver Disease Manifestations: Patient shows at least one of the following:
1. Ascites, refractory to treatment or patient non-compliant.
2. Spontaneous bacterial peritonitis.
3. Hepatorenal syndrome (elevated creatinine and BUN with oliguria).
4. Hepatic encephalopathy, refractory to treatment, or patient non-compliant.
5. Recurrent variceal bleeding despite intensive therapy.
Supporting Documentation Factors: Documentation of the following supports hospice eligibility:
1. Progressive malnutrition.
2. Muscle wasting with reduced strength and endurance.
3. Continued active alcoholism (>80 gm ethanol/day).
4. Hepatocellular carcinoma.
5. HBsAg (Hepatitis B) positivity.
6. Hepatitis C refractory to interferon treatment.

Note: Patients awaiting liver transplants who meet these criteria may be certified for hospice, but should be discharged if a donor organ becomes available.

F. Pulmonary Disease

Criteria for Terminal Stage Pulmonary Disease (Criteria 1 and 2 must be present; factors from 3, 4, and 5 provide supporting documentation):

These criteria apply to patients with various advanced pulmonary diseases progressing to end-stage pulmonary disease.

Severe Chronic Lung Disease: Documented by both:
1. Disabling dyspnea at rest, poorly responsive to bronchodilators, resulting in limited function (bed-to-chair existence, fatigue, cough). (FEV1 <30% of predicted post-bronchodilator is objective evidence but not mandatory.)
2. Progression of end-stage pulmonary disease evidenced by increased emergency department visits, hospitalizations for infections/respiratory failure, or physician home visits prior to certification. (Serial FEV1 decrease >40 ml/year is objective evidence of progression but not mandatory.)
Hypoxemia or Hypercapnia:
1. Hypoxemia at rest on room air (pO2 ≤55 mmHg or oxygen saturation ≤88%) – values from recent hospital records are acceptable; OR
2. Hypercapnia (pCO2 ≥50 mmHg) – values from recent (within 3 months) hospital records are acceptable.
Right Heart Failure (Cor Pulmonale): Secondary to pulmonary disease (not left heart disease or valvulopathy).
Unintentional Progressive Weight Loss: Greater than 10% of body weight in the preceding six months.
Resting Tachycardia: >100 beats per minute.

G. Renal Disease

Criteria for Terminal Stage Renal Disease:

Acute Renal Failure (Criteria 1 and either 2 or 3 must be present; factors from 4 provide supporting documentation):

Patient is not seeking dialysis or transplant, or is discontinuing dialysis.
Creatinine clearance <15 ml/min (GFR <15 ml/min).
Serum creatinine >8.0 mg/dl (>6.0 mg/dl for diabetics).
Comorbid Conditions:
1. Mechanical ventilation.
2. Malignancy (other organ system).
3. Chronic lung disease.
4. Advanced cardiac disease.
5. Advanced liver disease.
6. Sepsis.
7. Immunosuppression/AIDS.
8. Albumin <2.5 gm/dl.
9. Cachexia.
10. Platelet count <25,000/mm3.
11. Disseminated intravascular coagulation (DIC).
12. Gastrointestinal bleeding.

Chronic Renal Failure (Criteria 1 and either 2 or 3 must be present; factors from 4 provide supporting documentation):

Patient is not seeking dialysis or transplant, or is discontinuing dialysis.
Creatinine clearance <15 ml/min (GFR <15 ml/min).
Serum creatinine >8.0 mg/dl (>6.0 mg/dl for diabetics).
Signs and Symptoms of Renal Failure:
1. Uremia.
2. Oliguria <400 ml/24 hours.
3. Intractable hyperkalemia (>7.0 mEq/L) unresponsive to treatment.
4. Uremic pericarditis.
5. Hepatorenal syndrome.
6. Intractable fluid overload, unresponsive to treatment.

H. Stroke & Coma

Criteria for Terminal Stage Stroke or Coma:

Stroke:

Karnofsky Performance Status (KPS) or Palliative Performance Scale (PPS) of 40% or less.
Inability to maintain hydration and caloric intake with one of the following:
1. Weight loss >10% in the last 6 months or >7.5% in the last 3 months.
2. Serum albumin <2.5 gm/dl.
3. Current history of pulmonary aspiration unresponsive to speech language pathology intervention.
4. Sequential calorie counts documenting inadequate caloric/fluid intake.
5. Dysphagia severe enough to prevent sufficient food and fluid intake, and patient declines or does not receive artificial nutrition and hydration.

Supporting Diagnostic Imaging Factors for Poor Prognosis Post-Stroke:

For Non-Traumatic Hemorrhagic Stroke:

Large-volume hemorrhage on CT:
1. Infratentorial: ≥20 ml.
2. Supratentorial: ≥50 ml.
Ventricular extension of hemorrhage.
Surface area of hemorrhage involvement ≥30% of cerebrum.
Midline shift ≥1.5 cm.
Obstructive hydrocephalus in patients declining or not candidates for ventriculoperitoneal shunt.

For Thrombotic/Embolic Stroke:

Large anterior infarcts with cortical and subcortical involvement.
Large bihemispheric infarcts.
Basilar artery occlusion.
Bilateral vertebral artery occlusion.

Coma (Any Etiology): Comatose patients with any 3 of the following on day three of coma:

Abnormal brain stem response.
Absent verbal response.
Absent withdrawal response to pain.
Serum creatinine >1.5 mg/dl.

Supporting Documentation Factors for Stroke & Coma:

Documentation of medical complications within the previous 12 months, in the context of progressive clinical decline, that support a terminal prognosis:

Aspiration pneumonia.
Upper urinary tract infection (pyelonephritis).
Sepsis.
Refractory stage 3-4 decubitus ulcers.
Recurrent fever after antibiotics.

Conclusion

This terminal diagnosis list provides a structured framework for determining hospice eligibility across a range of conditions. By adhering to these guidelines and ensuring thorough documentation, healthcare professionals can confidently certify patients for hospice care, enabling them to receive the necessary support and comfort during their end-of-life journey. Understanding these criteria is paramount for providing compassionate and appropriate care, aligning with the core principles of hospice and palliative medicine.