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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 the symptoms of a disease, or slow the disease's progress, rather than provide a cure. However, it may occasionally be used in conjunction with curative therapy, providing that the curative therapy will not cause additional morbidity. It aims at 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.

Concept

The World Health Organization (WHO), in a 1990 report on the topic, defined palliative care as "the active total care of patients whose disease is not responsive to curative treatment". This definition stresses the terminal nature of the disease. However, the term can also be used more generally to refer to anything that alleviates symptoms, even if there is also 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.

The term is not generally used with regard to a chronic disease such as diabetes which, although currently incurable, has treatments that are (ideally) effective enough that it is not considered a progressive or life-threatening disease in the same sense as cancer or progressive neurological conditions. It is, however, occasionally used with regard to some diseases, such as chronic, progressive pulmonary disorders and end stage renal disease or chronic heart failure.

Though the concept of palliative care is not new, in the past most doctors have concentrated on aggressively trying to cure patients, so that concentrating on making a patient comfortable was seen as "giving up" on them. In recent times the concept of having a good quality of life has gained ground, although many would argue that there is a long way to go yet. A relatively recent development is the concept of a health care team that is entirely geared toward palliation; this is often called hospice or palliative care.

Note the ambiguity of the term palliative: most oncologists use the word to mean 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. And 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) or therapeutic (extends life) or palliative (provides comfort).

Goals

More than a place, hospice care is a philosophy that is now called "palliative care." Dictionary.com defines a hospice as "A program that provides palliative care and attends to the emotional and spiritual needs of terminally ill patients at an inpatient facility or at the patient's home," and the Cancer Web Internet site defines a hospice as "An institution that provides a centralized program of palliative and supportive services to dying persons and their families, in the form of physical, psychological, social, and spiritual care; such services are provided by an interdisciplinary team of professionals and volunteers who are available at home and in specialized inpatient settings. Origin: L. Hospitium, hospitality, lodging, fr. Hospes, guest"

Palliative care neither aims to hasten nor postpone dying. It is characterized by concern for symptom relief and promotion of general well-being and spiritual, psychological and social comfort for the person with a life-threatening or life-limiting illness. The need to maintain quality of life has become increasingly important, not just in the dying stages, but also in the weeks, months and years before death. As the worldwide increase in life expectancy has led to a corresponding increase in the incidence of age-related chronic illnesses and palliative care increasingly cares for patients with illnesses other than cancer such as end-stage heart, lung, kidney, or liver disease, motor neurone disease, and dementia. The patient and family are both the focus of palliative care, with emphasis placed upon the well-being of family caregivers as well as the patient. In addition, palliative care is no longer restricted to adults and many teams and hospices now exist for children of any age.

History

Hospices were originally places of rest for travellers 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. Relatively generous Medicare reimbursement for hospice treatment has greatly increased hospice usage in the United States. There are now roughly 3300 hospice services in operation in the United States. 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).

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 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, day care, day treatment and outpatients and work in close partnership with mainstream services. Hospices often house a full range of services and professionals.

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 speciality.

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/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[2].

Alternative medical treatments such as relaxation therapy[3] [4], massage[5] , music therapy[6] , and acupuncture[7] can relieve some cancer-related symptoms and other causes of pain. Treatment that integrates complementary therapies with conventional cancer care is integrative oncology.

See also

Footnotes

  1. ^ "WHO Definition of Palliative Care". World Health Organization. Retrieved March 07. {{cite web}}: Check date values in: |accessdate= (help); Unknown parameter |accessyear= ignored (|access-date= suggested) (help)
  2. ^ "CLIP: Current Learning in Palliative Care". Online tutorials. Help the Hospices. Retrieved March 07. {{cite web}}: Check date values in: |accessdate= (help); Unknown parameter |accessyear= ignored (|access-date= suggested) (help)
  3. ^ "Integration of behavioral and relaxation approaches into the treatment of chronic pain and insomnia". NIH Technology Assessment Panel on Integration of Behavioral and Relaxation Approaches into the Treatment of Chronic Pain and Insomnia. The Journal of the American Medical Association (archives). 1996. Retrieved March 07. {{cite web}}: Check date values in: |accessdate= (help); Unknown parameter |accessyear= ignored (|access-date= suggested) (help)
  4. ^ Walker, Walker; et al. (1999). "Psychological, clinical and pathological effects of relaxation training and guided imagery during primary chemotherapy (abstract)". PubMed, National Center for Biotechnology Information (NCBI). Retrieved March 07. {{cite web}}: Check date values in: |accessdate= (help); Explicit use of et al. in: |author= (help); Unknown parameter |accessyear= ignored (|access-date= suggested) (help)
  5. ^ Grealish L, Lomasney A, Whiteman B. (2000). "Foot massage. A nursing intervention to modify the distressing symptoms of pain and nausea in patients hospitalized with cancer (abstract)". PubMed, NCBI. Retrieved March 07. {{cite web}}: Check date values in: |accessdate= (help); Unknown parameter |accessyear= ignored (|access-date= suggested) (help)CS1 maint: multiple names: authors list (link)
  6. ^ Cassileth, Vickers, Magill. (2003). "Music therapy for mood disturbance during hospitalization for autologous stem cell transplantation: a randomized controlled trial (abstract)". PubMed, NCBI. Retrieved March 07. {{cite web}}: Check date values in: |accessdate= (help); Unknown parameter |accessyear= ignored (|access-date= suggested) (help)CS1 maint: multiple names: authors list (link)
  7. ^ David Alimi; et al. (2003). "Analgesic Effect of Auricular Acupuncture for Cancer Pain: A Randomized, Blinded, Controlled Trial". Journal of Clinical Oncology. Retrieved March 07. {{cite web}}: Check date values in: |accessdate= (help); Explicit use of et al. in: |author= (help); Unknown parameter |accessyear= ignored (|access-date= suggested) (help)
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