From the Guidelines
Hospice care focuses on providing comfort during the end-of-life process rather than hastening death, with a focus on managing symptoms and supporting patients and their families through the dying process. The steps leading to death under hospice care typically begin with decreased appetite and fluid intake, followed by increasing weakness and fatigue as the body conserves energy 1. Patients often sleep more and become less responsive to their surroundings. Breathing patterns may change, becoming irregular with periods of rapid breathing followed by pauses, known as Cheyne-Stokes respiration.
As the dying process progresses, patients may experience:
- Decreased urine output
- Inability to swallow
- Further decreased consciousness
- Mottled skin, particularly on extremities
- Terminal secretions that often produce a rattling sound during breathing Medications commonly used for symptom management include morphine or hydromorphone for pain and respiratory distress, lorazepam or midazolam for anxiety and agitation, haloperidol for delirium, glycopyrrolate or scopolamine for secretion management, and metoclopramide for nausea 1.
In the final hours, breathing becomes more shallow, blood pressure drops, and the pulse weakens until cardiac and respiratory functions cease. Hospice teams provide education and emotional support to families throughout this process, explaining these natural changes and ensuring the patient remains comfortable through appropriate medication administration and positioning. The timeline varies significantly between individuals, ranging from days to weeks depending on underlying conditions and individual factors 1.
From the Research
Steps Leading to Death Under Hospice Care
The process of hospice care is designed to support individuals with serious illnesses and their caregivers through the dying process. The following are key aspects of hospice care:
- Eligibility for hospice care typically requires a physician to determine that the patient has a prognosis of 6 months or less if the illness runs its expected course 2.
- Hospice care provides comprehensive comfort care, including medical care, pain management, and emotional and spiritual support tailored to the patient's needs and wishes 2.
- The care is delivered by an interdisciplinary team, including family physicians, physician medical directors, nurses, social workers, counselors, home health aides, and trained volunteers 2.
- Hospice care can be provided in various settings, including the patient's home, long-term care facilities, hospice facilities, and hospitals when needed for symptom control 2.
Care Transition and Live Discharge
In some cases, patients may leave hospice care prior to death, referred to as disenrollment or "live discharge" 3. This can be a distressing issue for patients, caregivers, and hospice professionals.
- Live discharge from hospice is a common issue that clinicians and healthcare professionals should consider when dealing with care transitions 3.
- Practical steps can be taken to support patients and families through this critical care transition, including addressing common issues surrounding live discharge and providing strategic directions for interprofessional clinicians to improve live discharge experiences 3.
End-of-Life Care and Symptom Management
Hospice care has been associated with better symptom relief, better achievement of patient end-of-life wishes, and higher overall rating of quality of end-of-life care compared to standard care 2, 4.
- Patient-defined factors that are important at the end of life include being physically independent, good symptom control, and spending quality time with friends and family 4.
- Hospice care can improve outcomes directly and support better and more appropriate healthcare use for people in the last stages of cancer, including improved symptom control and a greater likelihood of time spent at home 4.