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Medical Director Minute: Understanding Signs & Symptoms at the End of Life

February 21, 2023

Medical Information on Death Certificates
Dr. Ellen Middendorf
Medical Director of
Hospice of Southern Illinois.

Our goal in hospice care is to improve quality of life. At Hospice of Southern Illinois, we are experts at managing pain and symptoms related to terminal illnesses. We utilize an interdisciplinary team, including a physician, nurse practitioner, nurses, social workers, bereavement counselors, and hospice aides to provide care to patients and their families. Patients can experience a variety of symptoms at end of life. For example, symptoms may include pain, dyspnea or shortness of breath, constipation, nausea and vomiting, pharyngeal rales or rattling noise in the back of the throat, and terminal restlessness. In short, these are some of the most common. Next, continue reading more information on these specific symptoms.

Common End-of-Life Symptoms & Management

Pain: Pain is a widely prevalent symptom at end of life. 70% of patients with advanced cancer, 75% of heart failure patients, and up to 93% of patients dying from HIV/AIDS experience it. Pain is also very common in patients with dementia and neurologic diseases, such as multiple sclerosis and cerebrovascular disease. In hospice care, the class of medications called opioids most commonly treats pain.

Dyspnea: Dyspnea is the uncomfortable awareness of breathing. This symptom occurs in all disease states. A physical exam or laboratory manifestations cannot infer its presence or severity. It can occur in the absence of physical signs or abnormal findings on labs or radiographs. Therefore, our team must be very astute in listening to their patients and caregivers to ensure that this symptom is treated promptly. We can attempt nonpharmacologic treatment with oxygen and a bedside fan, but, once again, the mainstay of treatment is opioids.

Constipation: Constipation is a troubling symptom that can be caused by a multitude of issues. Problems within the colon, such as cancer or strictures, can be the culprit. Metabolic issues, including chronic diabetes, hypothyroidism, hypercalcemia, and chronic kidney disease can contribute. Constipation is often omnipresent for neurological conditions (spinal cord injuries, Parkinson’s disease, multiple sclerosis, and paraplegia). Many medications have constipation as a common side effect, including opiates, some antidepressants, iron supplements, anti-epileptic drugs, and anti-Parkinsonian agents. A low-fiber diet and an inactive lifestyle often contribute, in addition. Multiple types of laxatives and stool softeners can be helpful.

Nausea and Vomiting: Nausea and vomiting can be particularly distressing and affect an individual’s ability to eat. Additionally, there are a variety of causes. For instance, medications, including chemotherapy, opioids, anti-inflammatories iron, antibiotics, anticonvulsants, and antidepressants, are common agents to blame. Electrolyte disturbances, constipation, inflammation or tumors of the gastrointestinal tract, anxiety, and bowel obstructions are other common causes. If intracranial pressure increases, either due to a tumor or bleeding, this often leads to nausea and vomiting. There are many pharmaceutical agents available to treat nausea. Many are available to use in combination if needed.

“Death Rattle”: Pharyngeal rales are otherwise known as the “death rattle.” This sound is caused by the airways accumulating oral secretions. As a result, the patient loses the ability to clear their airways by coughing and swallowing, and it often occurs within 48 hours of death. Suctioning is ineffective to treat this symptom and may cause discomfort to the patient and a reactive swelling in the airway. The mainstay of treatment is a class of medications known as anticholinergics. Anticholinergics dry secretions.

Terminal Restlessness: The final grouping of symptoms to discuss is terminal restlessness which is common in patients with advanced illness nearing death. The patient may have a day-night reversal and is often anxious, restless, and has hallucinations. This complex can be difficult to manage and is often irreversible. Therefore, we focus on symptom control and relief of distress for the patient and the family. Pharmacologic agents treat the symptoms that the patient is experiencing.

The Hospice of Southern Illinois Difference

In conclusion, we will develop a personalized plan of care for all of our patients that meet their individualized needs. Our interdisciplinary team meets weekly to discuss our patients and their end-of-life symptoms to ensure that we are providing the best care possible. To learn more about our care, please visit hospice.org.

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