Understanding What Hospice Care Means

July 1, 2024

When treatment for serious illnesses is causing more side effects than benefits, or when health problems become compounded, then a patient and their family members may begin to wonder about hospice. “We recognized as people consider hospice, it’s highly emotional times,” says medical director for Austin Palliative Care Dr. Kate Tindall. “It might include worries and fears.” But one of the things she hears most often from patients and their families is that they wish they had started sooner. Understanding who qualifies for hospice and what it entails is the first part of deciding what might be best for those with terminal conditions.

What is Hospice Care?

Hospice is meant to care for people who have an anticipated life expectancy of 6 months or less, when there is no cure for their ailment, and the focus of their care shifts to the management of their symptoms and their quality of life. With hospice, the patient’s comfort and dignity become the priority, so treatment of the condition ends and treatment of the symptoms, such as pain management, begins. There are no age restrictions placed around hospice care, meaning any child, adolescent, or adult who has been diagnosed with a terminal illness qualifies for hospice care.

An individual does not need to be bedridden or already in their final days of life in order to receive hospice care. Other common misconceptions about hospice care are that it is designed to cure any illness or prolong life. It is also not meant to hasten death or replace any existing care, such as those already provided by a physician.

Determining When it’s Time for Hospice

Establishing care is most beneficial for the patient and their caregivers when it is taken advantage of earlier rather than later. Hospice can be used for months as long as eligibility has been met. Once there is a significant decline in physical or cognitive function, the goal for treatment should become to help that individual live comfortably and forgo anymore physically debilitating treatments that have been unsuccessful in curing or halting the illness. 

Both individuals and their loved ones who would benefit from initiating hospice care are often unaware of the services or are uncomfortable asking about them. “It’s a hard conversation to have,” says professor of medicine and palliative care at the Duke University School of Medicine David Casarett. “Many people really want to continue aggressive treatment up until the very end.” While many wait for their providers to suggest it, it should be understood that if eligibility for hospice has been met, an individual and their caregivers can initiate hospice care on their own.

Establishing Hospice Care

In order to qualify for hospice care, a physician must certify that the patient is medically eligible, which means that the individual’s life expectancy is 6 months or less. Typically, the referral to hospice starts with the attending physician’s knowledge of that person’s medical history, while eligibility is then confirmed by the hospice physician. A hospice care team consists of professionals who are trained to treat physical, psychological, and the spiritual needs of the individual, while also providing support to family members and caregivers. Care is person-centered, with the importance being placed on the coordination of care, setting clear treatment goals, and communicating with all involved parties.

Receiving Care at Home

Hospice care is generally provided in the person’s home, whether it’s a personal residence or a care facility, such as a nursing home. “When people are close to the end of their lives, going to the hospital does not make them feel better anymore,” explains professor of medicine at the University of California Dr. Carly Zapata. “Because there’s not necessarily something that we can do to address their underlying illness.” Staying at home allows the individual to be around their personal things and close to their loved ones and pets, which can provide them with comfort during the end of their life.

What Does Hospice Care Include?

Hospice includes periodic visits to the patient and their family or caregivers but is available 24-7 if needed. Medication for symptom relief is administered, any medical equipment needed is provided, and toileting and other supplies such as diapers, wipes, wheelchairs, hospital beds are provided. What may surprise some people is that hospice patients may even receive physical and occupational therapy, speech-language pathology services, and dietary counseling.

If needed, short-term inpatient care may be established for those who cannot achieve adequate pain and symptom relief in their home setting. Short-term respite care may also become available to help family caregivers who are experiencing or are at risk for caregiver burnout. Bereavement care, or grief and loss counseling, is also offered to loved ones who may experience anticipatory grief. Grief counseling is available to family members for up to 13 months after the person’s death.

Paying for Hospice

The first step in finding a hospice agency is to search for ones that serve your county. If there are several options available, then it’s recommended to talk to more than one and see which agency will best fit the patient’s needs. Adequate research should be conducted since not all hospice agencies provide physical and occupational therapy. 

Hospice is a medicare benefit that all Medicare enrollees qualify for, but it may also be covered through private insurance and by Medicaid in almost every state. Military families may receive hospice through Tricare, while veterans with the Veterans Health Administration Standard Medical Benefits Package are also eligible for hospice. Hospice agencies will also accept individual self-pay, while there are also non-profit organizations that provide hospice services free of charge.

Discontinuing Hospice Care

Though it is uncommon, if a patient does improve or their condition stabilizes, they may no longer meet medical eligibility for hospice. If this happens, the patient is discharged from the program. Another situation that sometimes arises is when a person elects to try a curative therapy, such as a clinical study for a new medication or procedure. In order to do that, the patient must withdraw from hospice through what is called revocation. Both children and veterans are exempt from being disqualified from hospice care if they choose to also pursue curative treatments. Any person may always re-enroll in hospice care at any time as long as they meet the medical eligibility.

Opting for Palliative Care

Individuals with chronic conditions or life-threatening illnesses may opt for palliative care, which doesn’t require people to stop their treatments. Palliative care is a combination of treatment and comfort care and can be an important bridge to hospice care if patients become eligible. Because transitioning to hospice care can be an emotional choice, palliative care providers often help patients prepare for that. Many people avoid palliative care because they think it is equal to giving up and that death is imminent, but studies show that for many, palliative care allows them to live longer, happier lives. This is due to the benefits of symptom management and spiritual support.

Insureyouknow.org

While hospice care can be difficult to accept, it can provide people with the best quality of life possible in their final days, as well as provide their loved ones with valued support. With Insureyouknow.org, you may keep track of all medical and financial records in one easy-to-review place so that you may focus on caring for your loved one, your family, and yourself during this period of their care.