When Is It Time For Hospice? 

The stage at which a patient is ready for hospice can look different according to the patient, their symptoms, and their particular disease. The following signs and symptoms aren’t hard requirements. They are guidelines for what families and patients should look for to make the best decision about hospice. 

Universal Signs

No matter the illness, there are a few universal signs that indicate a patient is likely ready for hospice.

  • The patient has been given an end-of-life prognosis. A doctor has certified the patient has six months or less to live if their illness follows its expected course. The disease is considered irreversible.
  • The patient, family, and/or doctors consider halting curative care. This often happens when efforts to cure the disease have proven ineffective or too debilitating to preserve any quality of life. Patients may opt out of curative care altogether and pursue palliative measures instead of curative measures. 
  • The patient shows rapid signs of physical or cognitive decline. They may be unable to bathe, dress, or eat independently. They may show signs of decreased alertness or weight loss of 10% body weight in a six-month period. They may experience a higher rate of hospitalization, ER visits, or infections.

Signs It’s Time

According to the patient’s illness:

Assessment of hospice readiness in the case of cancer can be very black and white.

  • Cancer is aggressive, advanced, resistant to treatment, or metastasized to other organs.
  • Pain is uncontrolled and quality of life is severely diminished. The patient may be too weak to receive additional treatments.
  • Curative care is no longer a viable option — chemotherapy, radiation, and immunotherapy options have been exhausted to no avail.
  • The patient forgoes curative care or declines further disease-directed therapy.

ALS tends to progress at a steady rate over time. Hospice eligibility for ALS depends on the patient’s ability to breathe and swallow. ALS patients may be ready for hospice when they choose not to use supportive ventilation or artificial hydration and nutrition. 

Critically impaired respiratory function is defined by an FVC less than 40% and two of the following symptoms:

  • Dyspnea (shortness of breath) at rest
  • Orthopnea
  • Use of accessory respiratory musculature
  • Paradoxical abdominal motion
  • A respiratory rate greater than 20
  • Reduced speech and vocal volume
  • Weakened cough
  • Symptoms of sleep-disordered breathing
  • Frequent awakening
  • Excessive daytime sleepiness
  • Unexplained headaches
  • Unexplained confusion
  • Unexplained anxiety
  • Unexplained nausea

Presently, there are no curative treatments for Alzheimer’s and dementia, and patients tend to decline over years. This makes it hard to know when hospice becomes an appropriate path to consider. Generally, it comes down to the patient’s ability to function. 

The terminal stage of an Alzheimer’s or dementia patient may be characterized by the following symptoms:

  • Stage seven or beyond on the Functional Assessment Staging Scale
  • Unable to ambulate, dress, and bathe without assistance
  • Incontinence, whether intermittent or constant
  • Verbal communication limited to six or fewer intelligent words at a time

If the patient has experienced these symptoms within the past 12 months, they may be ready for hospice:

  • Aspiration pneumonia
  • Pyelonephritis
  • Septicemia
  • Decubitus ulcers, multiple, stage 3-4
  • Fever, recurrent after antibiotics
  • Inability to maintain sufficient fluid and calorie intake with 10% weight loss during the previous six months or serum albumin less than 2.5 gm/dl

COPD and other lung diseases — like emphysema, pulmonary or cystic fibrosis, bronchiectasis, end-stage tuberculosis, and others — are some of the more common illnesses that hospice patients experience. 

One of the primary symptoms of lung disease is dyspnea, which is a shortness of breath or the feeling of not being able to get enough air in your lungs. While there are many curative and palliative treatments for these disorders, as the disease progresses, they will become less and less effective.

These lung disease symptoms are commonly associated with the disease’s end stages:

  • Disabling dyspnea at rest that impacts the patient’s ability to function.
  • Increasing visits to the emergency room, hospitalizations, or physician home visits for frequent pulmonary infections and/or respiratory failure. 
  • Hypoxemia (low levels of oxygen in the blood) at rest, with pO2 less than or equal to 55 mmHg or oxygen saturation less than or equal to 88%, or Hypercapnia (a decrease in alveolar and CO2 in the blood) evidenced by pCO2 of 55 mmHg or greater.

Patients and families should also look out for these symptoms:

  • Right heart failure secondary to pulmonary disease.
  • Unintentional weight loss of over 10% of body weight within a six-month period.
  • Resting tachycardia, which is a resting heart rate greater than 100 beats per minute.

Heart disease comes with a wide range of diagnoses and symptoms. As these symptoms worsen, the patient will grow less and less comfortable with any type of physical exertion. Eventually, the patient will only be comfortable when they are at rest.

Terminal patients commonly exhibit these symptoms, which align with the New York Heart Association’s Class IV (severe) designation. 

  • The patient has been optimally treated for heart disease or is not a candidate for surgical procedures or has declined those procedures.
  • The patient is unable to endure any physical activity, and symptoms of heart failure or anginal syndrome may be present even at rest. Significant congestive heart failure consists of an ejection fraction less than or equal to 20%. The ejection fraction is how much fluid is ejected from the chamber of the patient’s heart with each contraction.

These symptoms may also indicate that a patient should consider hospice.

  • Treatment-resistant symptomatic supraventricular or ventricular arrhythmias
  • History of cardiac arrest or resuscitation
  • History of unexplained syncope (fainting)
  • Brain embolism of cardiac origin
  • Concomitant HIV disease

The medical world has made great strides in treating HIV/AIDS, but doing so is still highly specialized. HIV/AIDS patients are likely ready for hospice if they meet the following criteria:

  • They have a T cell count of less than 25 cells per mm³ and a viral load greater than 100,000 copies per ml and present related disorders. 
  • The patient requires considerable assistance and frequent medical care, scoring a 50% or less on the Karnofsky Performance Scale.
  • Other end-stage symptoms to look out for include chronic persistent diarrhea for 12 months, low amounts of serum albumin, advanced AIDS dementia complex, toxoplasmosis, and others.

HIV/AIDS has a wide range of comorbid conditions like Hepatitis B and C, end-stage organ failure, diabetes, lung cancer and Hodgkin’s lymphoma, and others. The presence of these conditions may further indicate the patient is ready for hospice.

Liver disease includes many disorders that all result in the liver ceasing to function. End-stage liver disease cannot be reversed, only managed. At a point, however, the disease will stop responding to treatments and interventions. 

Here are signs a patient has entered end-stage liver disease and should consider hospice:

  • Prothrombin time is slow. Prothrombin time (PT) is how long it takes the liver to produce a protein (prothrombin) in the blood in order to form a clot. PT is measured in seconds, and a prothrombin time five seconds above the patient’s normal PT.
  • Albumin, another protein made by the liver, is low. For a critical patient, serum albumin is less than 2.5 gm/dl.

End-stage patients may also show one or more of these symptoms:

  • Ascites, a condition in which too much fluid builds up in the abdomen.
  • Bacterial peritonitis, which is an ascitic fluid infection.
  • Hepatorenal syndrome, which means the body produces less urine, so waste containing nitrogen builds up in the bloodstream.
  • Hepatic encephalopathy, in which toxins that aren’t filtered by the liver affect the brain, causing confusion, disorientation, and other symptoms.

End-stage patients may also show one or more of these symptoms:

  • Recurrent variceal bleeding, despite intensive therapy. This means large veins, usually in the esophagus, swell and burst. 
  • Progressive malnutrition
  • Muscle wasting 
  • Continued active alcoholism
  • Hepatocellular carcinoma (cancer of the liver)
  • Positive for Hepatitis B
  • Hepatitis C resistant to interferon treatment

The deterioration of the nervous system can be caused by several disorders, like a coma, stroke, Parkinson’s disease, and multiple sclerosis. Ultimately, complications from these disorders diminish the patient’s ability to breathe, swallow, or handle the tasks of daily living.

Patients suffering from neurological disorders are likely ready for hospice when they show these signs and symptoms:

  • Inability to breathe properly due to persistent cough, frequent aspiration pneumonia, or an inability to cough up fluids
  • Shortness of breath, even when resting or on oxygen
  • Can no longer swallow liquids or soft food without choking or coughing due to dysphagia
  • Decline in speech
  • Severe weight loss.
  • Inability to dress, bathe, or otherwise care for themselves and mainly in bed or bedbound.
  • Karnofsky Performance Scale (KPS) and Palliative Performance Scale (PPS) scores of less than 40%.
  • Refractory stage 3-4 decubitus ulcers (bed sores).
  • Fever recurrent after antibiotics.

Due to the patient’s compromised breathing, they will likely develop associated diseases like pneumonia, sepsis, and various infections. 

Renal disease refers to a sudden failure of the kidneys, while kidney disease refers to a chronic deterioration over time.

When a patient elects to withdraw or refuse dialysis treatment or a kidney transplant, they are likely ready to enter hospice. End-stage patients often exhibit the following symptoms:

  • Creatinine clearance of less than 10 cc/min (<15 cc/min for diabetics); or less than 15 cc/min (< 20 cc/min for diabetics) with comorbidity of congestive heart failure
  • Serum creatinine greater than 8 mg/dl (> 6 mg/dl for diabetics)
  • Estimated glomerular filtration rate (GFR) less than 10 ml/min

The signs and symptoms of end-stage renal failure are:

  • Uremia
  • Oliguria (<400 CC/24 hours)
  • Intractable hyperkalemia (>7.0) not responsive to treatment
  • Uremic pericarditis
  • Hepatorenal syndrome
  • Intractable fluid overload, not responsive to treatment

Know what is covered

The Medicare Hospice Benefit covers a wide range of treatments and interventions from a compassionate multi-disciplinary team specializing in end-of-life care. We’re here to help you navigate hospice care and make the right decision for you and your loved ones.

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Why In the Arms of Grace Hospice? 

IAGH is a family-owned and operated boutique hospice serving the communities of Los Angeles and its surrounding counties. We believe that while hospice may be a difficult time in one’s life, it certainly doesn’t have to be the worst. Our team goes above and beyond to help patients and families gain dignity, peace, and resolution in the face of loss.

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