Care at the end of life involves a team-oriented approach that includes expert medical care, pain management, and emotional and spiritual support. Care is tailored to the person’s needs and wishes while providing support to the person’s loved ones.
Palliative care manages the needs of patients who have a progressive incurable illness and often includes hospice. Palliative care utilizes an interdisciplinary approach that focuses on the physical, psychological, social, and spiritual needs of patients who have progressive incurable illnesses. Palliative care can be given at any time throughout the course of an illness, along with curative and aggressive treatments. It includes interventions that are intended to maintain quality of life and ease the suffering of both the patient and family. As death approaches, palliative care typically intensifies to ensure that comfort is a priority and practical needs are addressed (NCI, 2016).
The goal of palliative care is to improve the patient’s and the family’s quality of life by preventing and relieving suffering. This includes treating physical symptoms such as pain, and dealing with emotional, social, and spiritual concerns. When palliative treatment is given at the end of life, care is taken to make sure the patient’s wishes about treatments are followed (NCI, 2016).
[The following section on hospice is used with permission from Caring Connections, n.d.,a.]
Hospice is not a place; hospice is a family-centered approach to care at the end of life. Hospice care is generally for people with an expected survival of 6 months or less. Its goal is to improve the quality of life that remains by focusing on providing care for the patient and the family rather than attempting to cure the disease. Hospice is designed to relieve or decrease pain or other symptoms, and provide as much quality time as possible with family and friends while meeting the physical, emotional, and spiritual needs of the dying individual. The goal of all hospice care is palliation, or making the patient as comfortable as possible—not dulled by social isolation, drugs, or heroic life-saving efforts. Care is organized around the following principles:
- Care is based on caring, not curing.
- Services are usually provided in the person’s home, but may also be provided in freestanding hospice centers, hospitals, nursing homes, or other long-term care facilities.
- Services are available to patients of any age, religion, race, or illness.
- It is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed-care organizations.
The Hospice Team
The hospice care team includes doctors, nurses, home health aides, social workers, chaplains, counselors, and trained volunteers who work together to address the dying person’s physical, emotional, and spiritual needs. The goal is to help keep the person as pain-free as possible, with loved ones nearby until death. The hospice team develops a care plan that meets each person’s individual needs for pain management and symptom control. The team usually consists of:
- Clergy or other counselors
- Home health aides
- Hospice physician (or medical director)
- Social workers
- Trained volunteers
- Speech, physical, and occupational therapists, if needed
- The person’s personal physician may also be included.
It is important to have a physician involved to ensure quality hospice care. Patients can generally choose to have their personal doctor work with the hospice medical director to coordinate medical care, especially when symptoms are difficult to manage. The hospice medical director is also available to answer questions the person or loved ones may have regarding hospice medical care.
In many cases, family members or loved ones are the dying person’s primary caregivers and have their own special needs for support. As a relationship with the hospice begins, hospice staff will want to know how best to support the person and family during this time.
Among its major responsibilities, the interdisciplinary hospice team:
- Manages the person’s pain and symptoms
- Provides emotional support
- Provides needed medications, medical supplies, and equipment
- Coaches loved ones on how to care for the person
- Delivers special services like speech and physical therapy when needed
- Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time
- Provides grief support to surviving loved ones and friends
Support can include conversations with the person and family members, teaching caregiving skills, prayer, telephone calls to loved ones, including family members who live at a distance, and companionship and help from volunteers.
Counseling and grief support for the dying person and their loved ones are important parts of hospice care. After the person’s death, bereavement support is offered to families for at least one year. These services can include telephone calls, visits, written materials about grieving, and support groups. Individual counseling may be offered by the hospice, or the hospice may make a referral to a community resource.
Paying for Hospice
More than 90% of hospices in the United States are certified by Medicare. Eighty percent of people who use hospice care are over the age of 65, and are thus entitled to the services offered by the Medicare hospice benefit. This benefit covers virtually all aspects of hospice care with little expense to the person or family. In addition, most private health plans, plus Medicaid in 48 states and the District of Columbia, cover hospice services (Caring Connections, n.d.,b).Back Next