Advantages and Disadvantages of Hospice Care

Hospice services are a specialized form of medical care that seeks to provide comfort and maintain a patient's quality of life (to the greatest extent possible) for those facing a life-limiting illness, disease, or terminal condition.

While this care generally attempts to provide holistic comfort and dignity as death approaches, hospice might or might not be the right choice for you or a loved one depending on your unique needs and/or situation.

Here are some of the possible advantages and disadvantages of hospice care to consider.

Advantages

Hospice provides palliative care, meaning that it addresses the physical, psychological, and spiritual needs of people with serious and terminal illnesses. Rather than simply addressing one's medical condition, hospice care aims to improve a person's quality of life.

Hospice includes comprehensive, interdisciplinary care from a team of professionals and hospice volunteers. This care can involve physicians, case manager nurses, home health aids, certified medical social workers, chaplains, and trained hospice volunteers to meet the needs of the patient and his or her family members or personal caregivers.

Care is available 24 hours a day, including weekends and holidays. Patients and their family members or personal caregivers always have access to hospice professionals when they need assistance.

Hospice care seeks to manage pain and other symptoms. The palliative care provided by hospice focuses on comfort and quality of life. Hospice nurses work with patients and their loved ones to determine the degree of pain management needed, ensuring the best response to treatment.

Hospice provides support for caregivers. Aside from nurses, hospice does not provide patients with personal caregivers. They do, however, work closely with a patient's primary caregiver when making decisions about the patient's care.

Choosing hospice usually results in a reduction in your out-of-pocket expenses for medications, durable medical equipment, and medical supplies. Medicare, Medicaid and/or your private insurance typically cover the cost of these necessary items for hospice patients.

Choosing hospice care can also mean avoiding unwanted hospitalizations, medical treatments, and procedures. The goal of the entire hospice team is to support the wishes of the patient and his or her family members and personal caregivers while helping them achieve their goals for care.

Hospices provide help with medical and non-medical needs. Hospice addresses the spiritual and psychological needs of patients and their caregivers. Spiritual advisors, grief counselors, and social workers trained in addressing emotional needs are often offered at hospice centers.

Hospices commonly offer both home or inpatient care. Since hospice care aims to improve quality of life, many hospices offer hospice care in the comfort of the patient's own home. Many hospices will also deliver any specialized equipment or medications required to the patient's residence.

Disadvantages

A potentially significant disadvantage of choosing hospice care might arise due to the restrictions placed on the various aspects of treatment. Under the Medicare hospice benefit, a hospice receives a flat per-day amount of money from which all medical expenses must be paid. This can result in several difficulties:

Denial of some diagnostic tests might occur, such as blood work and X-rays. Even if requested by the patient's attending physician, the cost of these tests still becomes the financial responsibility of the hospice agency. Because these tests are expensive and might not always prove beneficial, hospice agencies often will not approve them.

Hospitalization is discouraged once a patient enters hospice care. While the Medicare hospice benefit does contain provisions for short-term hospital stays (called inpatient care) for symptom management, the criteria for admission and coverage for specific treatments are poorly defined.

Participation in experimental treatments or clinical trials is limited, even if you are considered eligible. Your current physical or mental state and and ability to travel can affect your ability to participate in a trial or experimental treatment. In addition, other treatments or procedures considered life-prolonging, like a nasogastric or "feeding" tube, might not be part of a patient's care.

Insurance may not fully cover hospice care for all people. Most hospice patients are eligible for 100% hospice coverage under Medicare. There can be exceptions, however. For example, if a hospice patient goes directly to the hospital without making arrangements with their hospice team, their hospice benefits could be at risk for termination.

Hospice care is not always available. Unfortunately, hospices often have to turn away patients due to a lack of hospice beds. Since hospice is only covered when a medical prognosis gives a patient six months or less to live, it can be difficult to allocate hospice care on short notice.

Quality of care concerns are common. A report by the U.S. Department of Health and Human Services reveals several concerns about poor hospice quality and even instances of serious harm to hospice patients. Most hospices, the report says, have at least one "deficiency" in the quality of care they provide, ranging from insufficient pain management to improper staff screening and training.

Families and caregivers often feel guilt for choosing hospice care. It's common for people to feel guilty when they place their loved one in hospice care, as though they have "given up" on them. Such feelings can make coping with the potential loss of their loved one's life especially difficult.

Why Do People Not Choose Hospice?

Because many misconceptions about hospice exist, as well as a general lack of awareness of its benefits and services, many patients fail to enter hospice at all, which leads to the underutilization of this specialized form of medical care.

Common misconceptions that stop people from referring themselves or a loved one to hospice include:

Hospice care is seen as giving up: Many people feel that hospice care is only about death and preparing to die. This belief causes many people to feel scared about hospice, as though it is a place where people are simply "waiting to die" rather than receiving palliative care to improve their quality of life.

Hospice is for people whose death is hours or days away: Hospice care can be accessed up to six months before a person is expected to die. Many hospices also provide opportunities for extended care. Also, research shows that hospice patients tend to live longer than patients with similar conditions who do not receive hospice care.

Once a person enters hospice care, they cannot leave: Hospice care is entirely at will. If a patient decides that they no longer wish to receive hospice care, they are free to leave without penalty. Should they decide to re-admit themselves to hospice, re-enrollment is typically permitted so long as they are still medically eligible.

Hospice requires a DNR (Do Not Resuscitate) order: The goal of hospice is to provide patients with the comfort and care they need to experience a peaceful death. A DNR is the patient's decision. Even if you do not sign one, you can still receive hospice care.

Hospice care is only for the elderly: Hospice care is available for any person of any age who has received a prognosis of six months or less to live.

Summary

The pros and cons of entering hospice can vary for you or a loved one depending on your unique needs and/or situation. When considering hospice, keep in mind that hospice does not include treatments aimed at curing an illness or prolonging life. The focus of hospice care is to provide pain and symptom management, allowing patients to experience a comfortable, peaceful death.