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, 2011c).
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, 2011c).
Palliative care should be routinely integrated with life-prolonging therapies. It is a growing practice specialty for a number of healthcare providers, who typically work in teams. Palliative care is offered when the disease is advanced, life expectancy is short, and problems are urgent and complex. These problems are most often related to uncontrolled symptoms, conflicted or unclear goals of care, distress related to the process of dying, and increasing family burden.
The definition of palliative care has much in common with hospice, but in the United States palliative care is evolving in a way that goes beyond the American version of hospice. Palliative care aims to address the physical, psychosocial, and spiritual concerns that contribute to both the quality of life and quality of dying for patients with life-threatening illnesses at any phase of the disease. Although the focus intensifies at the end of life, the core issues of comfort and function are important throughout the course of the disease.
For the many patients with incurable and progressive diseases who are undergoing active life-prolonging therapies and have life expectancies that potentially extend to years, palliative care includes symptom management, therapy aimed at restoring function, practical support, and psychological interventions. At all stages of the disease, effective palliative care increases the likelihood that the patient will cope adequately with the rigors of therapy and maintain a satisfying level of physical and psychosocial functioning.
For a dying patient, optimal palliative care addresses the traditional concerns of the hospice movement. Preparation of the patient and family for the inevitability of dying and the comfort of the patient are often the biggest challenges during this time. This preparation may have to address a broad range of psychological, social, family, and spiritual concerns.
All patients with progressive incurable diseases, and the families of these patients, need ongoing palliative care throughout the course of the disease, from the time of diagnosis until the final outcome. During much of this period, palliative care will focus on the provision of medical and nonmedical interventions intended to help the patient and family maintain the best quality of life possible as the patient lives with the disease. As the disease becomes more advanced, palliative care begins to focus on maintaining patient comfort and ensuring that other needs are addressed. Support of the family during this time, including bereavement support, is essential.
[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:
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:
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:
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.
For some people, hospice expenses are paid by health insurance plans (either group policies offered by employers or individual policies). Information about the types of medical costs covered by a particular policy is available from an employee’s personnel office, a hospital or hospice social worker, or an insurance company. Medical costs that are not covered by insurance are sometimes tax-deductible (NCI, 2006).
Medicare—a health insurance program for elders and the disabled that is administered by the Centers for Medicare and Medicaid Services (CMS) of the federal government—provides payment for hospice care. When a patient receives services from a Medicare-certified hospice, Medicare insurance provides substantial coverage, even for some services that would not be covered outside a hospice program (NCI, 2006).
The Medicare hospice benefit was initiated in 1983 and is covered under Medicare Part A (hospital insurance). Medicare beneficiaries who choose hospice care receive a full range of medical and support services for their life-limiting illness. Hospice care also supports the family and loved ones of the dying person through a variety of services (Caring Connections, n.d.b).
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 47 states and the District of Columbia, cover hospice services (Caring Connections, n.d.b).
Medicaid, a federal program that is part of CMS and is administered by each state, is designed for patients who need financial assistance for medical expenses. Information about coverage is available from state welfare offices, state public health departments, state social services agencies, or the state Medicaid office. In addition, local civic, charitable, or religious organizations may be able to help patients and their families with hospice expenses. Hospice will also work with the person and their family to ensure that needed services be provided (NCI, 2006).
If a patient’s health improves or their illness goes into remission, their physician may decide hospice is no longer needed. The patient may also choose to terminate hospice services at any time. When hospice services are stopped, the patient will receive the type of Medicare coverage received before hospice care. If patients are eligible, they may go back to hospice care at any time (Caring Connections, n.d.b).
In order to be eligible for Medicare hospice benefits, a patient must:
Medicare will continue to pay covered benefits for any health needs that are not related to the life-limiting illness.