This article serves to educate families and communities on what hospice care is, who it is for, how it can help, as well as dispel common misconceptions. For more details on hospice, I have included a PDF PowerPoint created by James L West Center for Dementia Care as well as some other resources.
Recent Hospice Data
As stated by 2022 National Hospice and Palliative Care Organization, there are more than 8,200 hospice agencies in the United States. Two-thirds are for profit. 1.72 million patients are on hospice. James L West Center for Dementia Care provides more statistics on hospice. 59% age 85 and older, 48.3% age 75-84- 37.2% age 65-74, and 26.5% age 65 or younger. 50.8% of hospice recipients are Caucasian, 35.%% African American, 33.3% Hispanic, 36.1% Asian/Pacific Islander, and 33.5% Native American. 50% of hospice care is provided in the home. Other locations of care include nursing homes, assisted living communities, free standing hospice facility, and correctional facility/shelter/hospital.
The Goal of Hospice and Expectations of Care
The goal of hospice is to provide end of life comfort care that aims to relieve pain and suffering and increase quality of life instead of focusing on curing patients’ terminal illness. The hospice team meets with patient in patient’s current living space such as their home, a long-term care facility, an inpatient hospice unit, hospital, shelter, or correctional facility and comprehensively assesses patients’ needs to form plan of care. Information gathered from assessment is used along with knowledge of hospice team professionals including doctors, nurses, social workers, spiritual care providers, and trained volunteers.
The care a patient receives helps them as well as family who may need respite from caregiving duties. Each plan of care is uniquely tailored to the patients needs and may change depending on how the patient progresses. Medications, monitors, walkers, and other equipment are delivered to the patient as required.
Who is on the Hospice Care Team
The Hospice team consists of doctors, nurses, social workers, spiritual care providers, and trained volunteers. The primary role of the physician is to approve patient for hospice admission, work with other team members, and re-approve patient for continued use of hospice care. The hospice nurse focuses on quality of care, pain management, and providing emotional support. There are home health hospice aids who assist with activities of daily living, help during meal time, and provide light housekeeping. Sometimes physical therapists, occupational therapists, and speech therapists, music therapists, and massage therapists are part of the hospice team. The social worker assists with educating patient and family on treatment plan, answering questions about death and dying, and supporting patient and family through grieving process. Hospice also helps families with funeral arrangments. Support for bereaved families is extended typically 13 months after a patient has passed. Spiritual care providers are specially trained and certified to provide spiritual counseling and ministry which may or may not include a religious component. They may explore with patient how he or she wishes to be remembered, concerns about death and an afterlife, and forgiving others or self. Volunteers may assist with emotional support and provide companionship. Meetings with hospice team usually occur every 14 days.
Eligibility Requirements and Paying for Hospice
To qualify for hospice a person must be diagnosed with a terminal illness such as cancer or Alzheimer’s and other dementias that is at the end stage and be expected to live 6 months or less if treatment is stopped. Sometimes there are disease specific requirements to qualify for hospice. Hospice can be renewed if patient is living past 6 months as long as proof of decline can be made to Medicare. A patient can stop hospice care and change to another type of care if they want. Some patients live longer than 6 months on hospice and others get better and graduate from hospice. Hospice can be paid for by Medicare, Medicaid, or Private Insurance each with their own eligibility requirements. See link at end of article for more information.
What the dying process may look like on Hospice
Here are three common things that happen when a patient is nearing death. Terminal respiratory secretions aka death rattle- This happens when a patient losses their ability to swallow and there is an accumulation of saliva and bronchial secretions in the throat and upper chest. This typically happens 24 hours before a patient passes away. While the patient is usually not disturbed by this it can be distressing to families who witness this happening to their loved one. Certain medications which hospice might administer can reduce secretions.
Seeing spirits or loved one’s who have passed on- This typically occurs one month before death and is distinctly different from hallucinations or delusions. They are alert and oriented during this time. This may be referred to as deathbed phenomenon. This is also known as visioning and is a source of comfort for the individual.
Terminal lucidity aka the surge/rally- This is when the patient experiences increased energy and acts like their former self, may walk or talk again. This occurs usually within a few days or hours before death. Family may misinterpret this as a sign their loved one is getting better.
Clarifying common misconceptions
Myth 1- Hospice is where a person goes to die.
Often times people will delay hospice care because they fear it is a death sentence. While it is true that treatment for a terminal illness must stop for a person to qualify for hospice care, some patients may live a long time on hospice. Also they can still receive treatment for conditions unrelated to their terminal illness. Living longer may be due to a shift in focus from receiving aggressive treatment often with side effects to experiencing a better quality of life that focuses on comfort, finding meaning, and creating positive memories through shared experiences with loved ones.
Myth 2- Hospice patients cannot continue to see their primary care physician
If the patient chooses, they can still receive care from their PCP.
Myth 3- If a patient lives longer than 6 months on hospice they can no longer receive care.
As mentioned earlier in this article, a doctor may renew a patients stay on hospice if they are still alive past the 6-month mark.
Myth 4- Patients are overmedicated resulting in dying faster or sleeping too much
Although medication like morphine and other pain management medicines may be administered, the dose starts low and patients are actively involved in how much medication they receive. Doctors and nurses will discuss with patient pain relief vs side effects of medications and help determine the best course of action.
Myth 5- Hospice discourages eating and drinking
If a patient wants to eat and drink, then hospice will make sure that happens. Hospice will not force a patient to eat or drink if he or she does not wish to do so anymore.
Myth 6- Hospice care is expensive
Patients 65 and older are eligible to receive Medicare Hospice Benefit which covers nearly all hospice services.