Palliative care

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Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms or slowing the disease's progress, rather than providing a cure. While palliative care may occasionally be used in conjunction with curative therapy, providing that the curative therapy will not cause additional morbidity, the primary aims of palliative care are improving quality of life by reducing or eliminating pain and other physical symptoms, enabling the patient to ease or resolve psychological and spiritual problems, and supporting the partner and family.

Contents 1 Concept 2 Clarification 3 Goals 4 History 5 Practice 6 Dealing with distress 7 See also 8 Footnotes 9 External links

[edit] Concept

In a 1990 report on end of life care, the World Health Organization (WHO) defined palliative care as "the active total care of patients whose disease is not responsive to curative treatment, including control of pain, other symptoms, and psychological, social, and spiritual problems". This definition stresses the terminal nature of the disease. However, the term may also be used more generally to refer to any care that alleviates symptoms, even if there is hope of a cure by other means; thus, a more 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.

Palliative care is not generally used to refer to care for a chronic disease such as diabetes. Although currently incurable, chronic disease often has treatments that are effective enough that the disease is not considered progressive or life-threatening in the same sense as cancer. The term is, however, increasingly used with regard to life-threatening diseases other than cancer, such as chronic, progressive pulmonary disorders, end stage 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 individuals with life-limiting illnesses.

Though the concept of palliative care is not new, most physicians have traditionally concentrated on aggressively trying to cure patients. Merely making a patient comfortable was viewed as equivalent to speeding death. The 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, nearly one-fifth of community hospitals have palliative care programs and one-fourth of teaching hospitals offer palliative care programs as well ^[3]. 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.

[edit] Clarification

While the term palliative is most often used to refer to any treatment that's not curative, curative means almost certain to eliminate the disease indefinitely. Thus a treatment that lets a patient die in comfort rather than in pain, without changing the term of life, is palliative. A treatment that lets a patient live ten years longer is also palliative. A few doctors have attempted to eliminate this ambiguity by switching from a bi-modal to a tri-modal classification: a treatment of a terminal disease is curative (eliminates the disease), therapeutic (extends life), or palliative (provides comfort).

There is often substantial confusion between the terms hospice and palliative care. Modern use of the term palliative care is traditionally attributed to Dr. Balfour Mount, a founder of the North American hospice and palliative care movement. Mount felt the need to use a different word when referring to hospice services, as the French equivalent for hospice meant almshouse ^[4]. Since that time, hospice in North America has evolved into a type of time-limited end-of-life care.^[5] In the United States, hospice care is limited exclusively to the last six months of a patient's life due to reimbursement methods. Palliative care, alternatively, may be delivered at any point during an illness, in many forms, and over an extended period of time.^[6]

[edit] Goals

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

[edit] History

Hospices were originally places of rest for travelers in the 4th century CE. 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. Dr. Cicely Saunders is regarded as the founder of the hospice movement. Since its beginning, the hospice movement has grown dramatically.

In the UK in 2005 there were just under 1700 hospice services. This consisted 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.

The first hospice in the United States was established in 1974 in Branford, Connecticut by an interdisciplinary team from Yale University led by nurse Florence Schorske Wald. Relatively generous Medicare reimbursement for hospice treatment has greatly increased hospice usage in the United States. There are now roughly 4,100 hospice services in operation in the United States (NHPCO). The first United States hospital-based palliative care programs began in 1989, at the Cleveland Clinic, in response to the recognition that restrictions on hospice eligibility imposed by the Medicare Hospice Benefit prevented adequate care for seriously ill and dying patients in acute care hospitals. In response, there has been a dramatic increase in hospital-based palliative care programs, now numbering more than 1200 (www.capc.org).

[edit] Practice

In the United States, hospice and palliative care represent two different aspects of care with similar philosophy, but 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, hospice chaplains, social workers, 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 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. Both children's and adult services exist.

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.

[edit] Dealing with distress

The key to effective palliative care is to provide a safe way for the individual to address their physical and/or psychological distress. This involves 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 is often a psychological, social, and/or spiritual component to that symptom. The interdisciplinary team, often including a chaplain, a social worker, and counselors, can play integral role in helping the patient and family cope with these symptoms, rather than depending on the medical/pharmacological interventions alone. It is important to note that a hospice patient's common concerns are pain, 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^[8].

Alternative medical treatments such as relaxation therapy^{[9] [10]}, massage^[11] , music therapy^[12] , and acupuncture^[13] can relieve some cancer-related symptoms and other causes of pain. Treatment that integrates complementary therapies with conventional cancer care is integrative oncology.

[edit] See also

• Hospice chaplain
• Terminal sedation
• Pain medicine
• Elisabeth Kübler-Ross
• Symptomatic treatment

[edit] Footnotes

[edit] External links

• Hospice Information Online database to search for palliative care organisations worldwide.
• The National Council for Palliative Care (UK)
• CLiP- Current Learning in Palliative Care Fifty six workshops on palliative care which can be used online or dounloaded. Free access, no restrictions.
• International Association for Hospice and Palliative Care
• Palliativedrugs.com. Online palliative care formulary. Also has bulletin board with over 22,000 international professionals registered. Free access after registration.
• Palliative Care Matters Palliative Care information.
• Palliative Care Handbook Online palliative care textbook
• Palliative Care at the Open Directory Project (suggest site)
• Palliative Care and Euthanasia