Palliative care

Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than providing a cure. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment. It should not be confused with hospice care which delivers palliative care to those at the end of life. In the UK this distinction is not operative; hospices and non hospice based palliative care teams both provide care to those with life limiting illness at any stage of their disease. (See "History" and "Practice" below for additional information on hospice and hospice care.)

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Concept

The term "palliative care" may be used generally to refer to any care that alleviates symptoms, even if there is hope of a cure by other means; thus, a recent WHO statement^[1] calls palliative care "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness." In some cases, palliative treatments may be used to alleviate the side effects of curative treatments, such as relieving the nausea associated with chemotherapy.

The term "palliative care" is increasingly used with regard to diseases other than cancer, such as chronic, progressive pulmonary disorders, renal disease, chronic heart failure or progressive neurological conditions. In addition, the rapidly-growing field of pediatric palliative care has clearly shown the need for services geared specifically for children with serious illness.

Though the concept of palliative care is not new, most physicians have traditionally concentrated on aggressively trying to cure patients. Available treatments for alleviation of symptoms were viewed as hazardous and seen as inviting addiction and other unwanted side effects.^[2]

Over the past twenty years, the focus on a patient's quality of life has gained substantial ground. Today in the United States, 55% of U.S. hospitals with over 100 beds offer a palliative care program^[3] and nearly one-fifth of community hospitals have palliative care programs.^[4] A relatively recent development is the concept of a dedicated health care team that is entirely geared toward palliative treatment, called a palliative care team.

Clarification

There is often confusion between the terms hospice and palliative care. In the United States, hospice services and palliative care programs share similar goals of providing symptom relief and pain management.^[5] However, the most important distinction between hospice and palliative care programs in the United States is that hospice is a Medicare Part A benefit, thus requiring many aspects of hospice care such as enrollment to be regulated by the United States federal government.[1][2] Non-hospice palliative care, however, is appropriate for anyone with a serious, complex illness, whether they are expected to recover fully, to live with chronic illness for an extended time, or to experience disease progression.^[6]

Goals

While palliative care may seem to offer an incredibly broad range of services, the goals of palliative treatment are extremely concrete: relief from suffering, treatment of pain and other distressing symptoms, psychological and spiritual care, a support system to help the individual live as actively as possible, and a support system to sustain and rehabilitate the individual's family.^[7]

History

Palliative care today is no longer limited to hospice care, however palliative care began in the hospice movement. Hospices were originally places of rest for travelers in the 4th century. In the 19th century a religious order established hospices for the dying in Ireland and London. The modern hospice is a relatively recent concept that originated and gained momentum in the United Kingdom after the founding of St. Christopher's Hospice in 1967. It was founded by Dame Cicely Saunders, widely regarded as the founder of the modern hospice movement.

Recently, the hospice movement has grown dramatically. In the UK in 2005 there were just under 1700 hospice services, consisting of 220 inpatient units for adults with 3156 beds, 33 inpatient units for children with 255 beds, 358 home care services, 104 hospice at home services, 263 day care services and 293 hospital teams. These services together helped over 250,000 patients in 2003/4. Funding varies from 100% funding by the National Health Service to almost 100% funding by charities, but the service is always free to patients.

Hospice in the United States has grown from a movement headed by volunteers such as Barbara Jensen to improve care for people dying alone, isolated, or in hospitals, to a significant part of the health care system. In 2005 more than 1.2 million individuals and their families received hospice care. Hospice is the only Medicare benefit that includes pharmaceuticals, medical equipment, twenty-four hour/seven day a week access to care and support for loved ones following a death. The majority of hospice care is delivered at home. Hospice care is also available to people in home-like hospice residences, nursing homes, assisted living facilities, veterans' facilities, hospitals and prisons.

The first United States hospital-based palliative care programs began in the late 1980s at only a handful of institutions such as the Cleveland Clinic and Medical College of Wisconsin. Since then there has been a dramatic increase in hospital-based palliative care programs, now numbering more than 1200. Over 55% of U.S. hospitals over 100 beds have a program.^[8] Hospital palliative care programs today care for non-terminal patients as well as hospice patients. Palliative care programs in hospitals can be difficult to financially support given the multiple employees on a palliative care team and the time-intensive involvement with patients without adequate reimbursement. Therefore, strategies for funding palliative care programs typically focus on cost-savings for the hospital as opposed to revenue-generating models.

Practice

In the United States, hospice and palliative care represent two different aspects of care with similar philosophy, but with different payment systems and location of services. Palliative care services are most often provided in acute care hospitals organized around an interdisciplinary consultation service with or without an acute inpatient palliative care ward. Palliative care may also be provided in the dying person's home as a "bridge" program between traditional US home care services and hospice care or provided in long-term care facilities. In contrast, over 80% of hospice care in the US is provided in a patient's home, with the remainder provided to patients residing in long-term care facilities or in free standing hospice residential facilities. In the UK, hospice is seen as one part of the specialty of palliative care and no differentiation is made between 'hospice' and 'palliative care'.

In most countries, hospice and palliative care is provided by an interdisciplinary team consisting of physicians, registered nurses, social workers, hospice chaplains, physiotherapists, occupational therapists, complimentary therapists, volunteers and, most importantly, the family. The focus of the team is to optimize the patient's comfort. Additional members of the team are likely to include certified nursing assistants or home health care aides, volunteers from the community (largely untrained but some being skilled medical personnel as well), and housekeepers.

In the UK palliative care services offer inpatient care, home care, day care, outpatients and work in close partnership with mainstream services. Hospices often house a full range of services and professionals for both pediatric and adult patients.

In the US, palliative care services can be offered to any patient with no restrictions on disease type or expected prognosis. However, hospice care under the Medicare Hospice Benefit, requires that two physicians certify that a patient has less than six months to live, if the disease follows its usual course. This does not mean, however, that if a patient is still living after six months in hospice, he or she will be discharged from the service. Such restrictions do not exist in other countries such as the UK.

Caregivers, both family and volunteers, are crucial to the palliative care system. Because of the amount of individual contact, caregivers and patients often form lasting friendships yet consequently, caregivers may find themselves under severe emotional and physical strain. Opportunities for caregiver respite are some of the services hospices provide to promote caregiver well being. Respite may be for several hours or up to several days (the latter being done usually by placing the patient in a nursing home or in-patient hospice unit for several days).

Because palliative care sees an increasingly wide range of conditions in patients at varying stages of their illness, it follows that palliative care teams offer a wide range of care. This may range from managing the physical symptoms in patients receiving active treatment for cancer, through treating depression in patients with advanced disease, to the care of patients in their last days and hours. Much of the work involves helping patients with complex or severe physical, psychological, social and spiritual problems. In the UK over half of patients are improved sufficiently to return home. If a patient dies, it is common for most hospice organizations to offer bereavement counseling to the patient's partner or family.

In the US, board certification for physicians in palliative care is through the American Board of Hospice and Palliative Medicine; more than 50 fellowship programs provide 1-2 years of specialty training following a primary residency. In the UK, palliative care has been a full specialty of medicine since 1989 and training is governed by the same regulations through the Royal College of Physicians as with any other medical specialty.

Funding for hospice and palliative care services varies. In the UK and many other countries, all palliative care is offered free to the patient and their family, either through the National Health Service (as in the UK) or through charities working in partnership with the local health services. Palliative care services in the US are paid by philanthropy, fee-for service mechanisms or from direct hospital support, while hospice care is provided as Medicare benefit; similar hospice benefits are offered by Medicaid and most private health insurers. Under the Medicare Hospice Benefit (MHB), a patient signs off their Medicare Part A (hospital payment) and enrolls in the MHB with direct care provided by a Medicare certified hospice agency. Under terms of the MHB, the Hospice agency is responsible for the Plan of Care and may not bill the patient for services. The hospice agency, together with the patient's primary physician, is responsible for determining the Plan of Care. All costs related to the terminal illness are paid from a per diem rate (~US $126/day) that the hospice agency receives from Medicare-this includes all drugs and equipment, nursing, social service, chaplain visits and other services deemed appropriate by the hospice agency; Medicare does not pay for custodial care. Patients may elect to sign-off the MHB and return to Medicare Part A and re-enroll in hospice at a later time.

Dealing with distress

The key to effective palliative care is to provide a safe way for the individual to address their physical and psychological distress, that is to say their total suffering, a concept first thought up by Dame Cicely Saunders, and now widely used, for instance by authors like Twycross or Woodruff.^[9] Dealing with total suffering involves a broad range of concerns, starting with treating physical symptoms such as pain, nausea and breathlessness. The palliative care teams have become very skillful in prescribing drugs for physical symptoms, and have been instrumental in showing how drugs such as morphine can be used safely while maintaining a patient's full faculties and function. However, when a patient exhibits a physiological symptom, there are often psychological, social, or spiritual symptoms as well. The interdisciplinary team, which often includes a social worker or a counselor and a chaplain, can play a role in helping the patient and family cope globally with these symptoms, rather than depending on the medical/pharmacological interventions alone. Usually, a palliative care patient's concerns are pain, fears about the future, loss of independence, worries about their family, and feeling like a burden. While some patients will want to discuss psychological or spiritual concerns and some will not, it is fundamentally important to assess each individual and their partners and families need for this type of support. Denying an individual and their support system an opportunity to explore psychological or spiritual concerns is just as harmful as forcing them to deal with issues they either don't have or choose not to deal with.

Some charities for the hospice movement offer free, self learning online programmes covering all aspects of palliative care, including management of distress.^[10]

Alternative medical treatments such as relaxation therapy,^[11][12] massage,^[13] music therapy,^[14] and acupuncture^[15] can relieve some cancer-related symptoms and other causes of suffering. Treatment that integrates complementary therapies with conventional cancer care is integrative oncology.

See also

• Elderly care
• Elisabeth Kübler-Ross
• Florence Wald
• Hospice chaplain
• Children's hospice
• Medical social work
• Pain medicine
• Patient safety
• Symptomatic treatment
• Terminal sedation