Pain and Symptom Management at End of Life
Overview of Hospice of Southern Maine
Organization Profile: Hospice of Southern Maine is a local, non-profit hospice agency operating in Southern Maine.
Service Delivery Models: - Home Program: Hospice staff travels to wherever the patient resides. - Inpatient Facility: The Gosnell Memorial Hospice House, located in Scarborough, Maine, provides inpatient services and respite care.
Expert Introduction: Jason Libby, a Nurse Practitioner Supervisor with 12 years of experience at Hospice of Southern Maine, is certified in both hospice and palliative care.
The Philosophy of Pain and Symptom Management
Guiding Quote: "Life is pleasant, death is peaceful, and it's the transition that's troublesome." (Jason Libby's favorite quote).
The Transitional Phase: Hospice focuses on managing the difficult transition between life and death.
Definition of Pain: Pain is subjective and is defined by whatever the patient says it is. Hospice providers listen to personal descriptions and absorb what people tell them about their discomfort beyond simple numerical scales.
Whole-Body Suffering: Hospice assesses suffering holistically, including: - Physical pain. - Psychological distress. - Spiritual distress. - Cultural and personal beliefs regarding suffering.
Quality of Life: The primary job of hospice is not death, but promoting quality of life in people with life-limiting illnesses.
Universal Symptoms at the End of Life
Regardless of the disease process, most patients experience the following symptoms to some extent: - Pain: Nearly universal discomfort as the body transitions. - Shortness of Breath (Dyspnea): Common even in non-respiratory processes as the body shuts down. - Agitation or Delirium: Mental confusion and restlessness. - Anxiety or Restlessness: Often triggered by a biological "fight or flight" response. - Nausea: Though nearly universal, it is the symptom least common to be severe.
Addressing Common Myths and Barriers
The "Anchor" Effect: Inadequate symptom relief acts as an anchor, keeping a person "stuck" in a protracted and miserable transitional phase. Proper management allows the "energy" or "soul" to move on.
Hastening Death: There is a pervasive myth that narcotics hasten death. In reality, proper use of narcotics can extend life by reducing stress on the heart and lungs and improves the quality of whatever time remains.
Fear of Addiction: For hospice patients, addiction is not a realistic concern. Dependence is viewed similarly to dependence on blood pressure medication or insulin—a necessary tool to maintain functional status.
Stoicism and "Yankee" Culture: Many patients feel asking for relief is a sign of weakness. Providers must reassure patients that there are no "awards for suffering" and that relief allows them to be present for their families.
The "Morphine and Death" Correlation: Patients often associate morphine with immediate death because they saw it used in hospitals decades ago without context. Providers explain that morphine is used because the patient is dying; the morphine itself does not cause the death.
Common Hospice Medications and Toolkits
Narcotics (Opioids): - Morphine: A primary tool for both pain and shortness of breath. - Dilaudid: Used for pain management. - Fentanyl: Often administered as a patch changed every three days. - Oxycodone: Often viewed by families as "safer" than morphine, but is actually more potent milligram-per-milligram and has a more troublesome side effect profile. - Methadone: Highly effective for complex pain; though stigmatized due to its use in addiction recovery, it works differently from other narcotics.
Adjuvants (Supplementary Meds): - Tylenol and Motrin (Ibuprofen): Excellent for bone pain or swelling even when the patient is on high-dose narcotics. - Steroids: Dexamethasone (Decadron) and Prednisone are used to reduce inflammation.
Anxiety and Restlessness: - Ativan (Lorazepam) and Valium (Diazepam): Short-acting medications used to calm the "fight or flight" response.
Agitation, Delirium, and Nausea: - Haldol (Haloperidol): An old-school antipsychotic. It is exceptionally good at managing agitated delirium and nausea. It does not "knock patients out"; if a patient sleeps after a dose, it is usually because they were physically exhausted by previous agitation.
Shortness of Breath (Dyspnea): - The Gold Standard: A combination of Morphine and Ativan. Morphine masks the sensation of "air hunger" and opens lung/heart vessels, while Ativan stops the panic resulting from the inability to breathe.
Medication Administration Methods
Oral: Pills or liquid versions. Liquids often absorb readily through the mucosa of the mouth.
Rectal: Used when swallowing is impossible. The Macy Catheter—a thin tube placed in the rectum—is used for medication instillation. This area is rich in blood vessels, allowing medications to diffuse almost as rapidly as an IV.
Intravenous (IV) / Subcutaneous: Used for continuous infusions. This is common at the Gosnell House but can be done at home via a port or indwelling catheter with a PCA (patient-controlled analgesia) button.
Questions & Discussion
Resistance to Morphine: Jason suggests starting with "judicious dosing" rather than "coming out of the gate swinging" to prove that the medication won't immediately cause sedation.
Dementia and Pain: Patients with advanced dementia cannot report pain. Providers look for non-verbal cues: grimacing, scowling, tension in shoulders, or legs "seized up." Often, the first line of treatment for agitation in dementia is trial pain medication.
Phenobarbital: Described as a "sedative hypnotic." It is used for "existential pain" or "whole-body suffering" that does not respond to narcotics. It creates a barrier between the brain's perception and the physical body.
The "Death Rattle" (Secretions): - Medications: Hyoscine (disintegrating tabs), Robinol (Glycopyrrolate), and Atropine drops. - Positioning: Postural drainage is the most effective method—tilting the patient on their side to let fluid drain out rather than accumulate in the throat.
ALS Management: Pain management is similar to other patients, but there is a heavy focus on respiratory support (continuous masks, tracheostomies, or ventilators). Family support is more intensive due to the long, "drawn-out march" of the disease.
Administering Meds at Home: Non-medical home care companies (private pay caregivers) are legally prohibited from administering medications. In these cases, family members or friends must be trained by hospice nurses.
Disqualifying Treatments: Curative treatments (chemo, organ transplants, surgical fixes for perforations) may disqualify hospice benefits. However, palliative exceptions exist, such as radiation for bone lesions to relieve pain. Patients can revoke hospice to try a curative procedure and return later if they still clinically qualify.