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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 slows its progress rather than providing a cure. It aims at improving quality of life, by reducing or eliminating pain and other physical symptoms, enabling terminally ill patients to ease or resolve psychological and spiritual problems, and supporting the partner and family.
- Main article: Psychological aspects of palliative care
- Main article: The role of the psychologist in palliative care
The concept of palliative care
The World Health Organisation (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 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.
Hospice and palliative care 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 death nor to postpone death. 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 motor neurone disease and heart failure. 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.
Palliative care has been described as "Intensive care without the hardware."
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 treatement has greatly increased hospice usage in the United States. There are now roughly 3300 hospice services in operation in the United States.
Palliative care practice
Palliative care most often occurs in the dying person's home. It is also provided in freestanding inpatient (hospice) units and within regular hospital units.
In most countries, hospice 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, a patient is usually admitted into a palliative care program if there is a reasonable expectation of death within 6 months. 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. 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. It is important to note that in the United States, while in hospice care, a Medicare patient gives up his or her claims to reimbursement for any treatment of the terminal condition, with the exception of what the hospice considers palliative treatment. (Though a hospice patient may later opt out of hospice care.) Also, Medicare does not reimburse for what is considered custodial care. 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.
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.
Alternative medical treatments such as relaxation therapy , massage , music therapy , and acupuncture can relieve some cancer-related symptoms and other causes of pain. Treatment that integrates complementary therapies with conventional cancer care is integrative oncology.
- Advance directives
- Assisted suicide
- Death and dying
- End-of-life care
- End of life planning
- Health care delivery
- Life sustaining treatment
- Long term care
- Pain management
- Elisabeth Kübler-Ross
- Symptomatic treatment
- Terminal sedation
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- ^ CLIP: Current Learning in Palliative Care. Online tutorials. Help the Hospices. URL accessed on March 07, 2006.
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- ^ 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). URL accessed on March 07, 2006.
- ^ 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. URL accessed on March 07, 2006.
- ^ Cassileth, Vickers, Magill. (2003). Music therapy for mood disturbance during hospitalization for autologous stem cell transplantation: a randomized controlled trial (abstract).. PubMed, NCBI. URL accessed on March 07, 2006.
- ^ David Alimi et al. (2003). Analgesic Effect of Auricular Acupuncture for Cancer Pain: A Randomized, Blinded, Controlled Trial. Journal of Clinical Oncology. URL accessed on March 07, 2006.
- Canadian Hospice Palliative Care Association
- Hospice Association of Ontario
- Hospice and Palliative Nurses Association - Educational products and services for all levels of hospice and palliative nursing care
- Care NOT Killing Alliance - promoting palliative care, opposing euthanasia and assisted suicide in the UK
- Caring to the End of Life, a Web site for anyone who needs information about palliative care for cancer patients.
- UK Hospice Information
- Palliative Care Drug Information
- Welsh Palliative Care information site
- UK national hospice organisation
- Free online Palliative Care e-Learning
- Compassion & Choices
- Palliative care
- Psychosocial Oncology and Palliative Care
- Pain & Symptom Management and Palliative Care
- Palliative Care
- American Academy of Hospice and Palliative Medicine
- American Board of Hospice and Palliative Medicine
- The National Hospice and Palliative Care Organization (NHPCO)
- The Center to Advance Palliative Care (CAPC)
- Hospice Association of America (HAA)
- Indian Journal of Palliative Care
- International Journal of Pain Medicine and Palliative Care
- Pallimed: A Palliative Medicine Blog
- Palliative Care Australia
- International Journal of Palliative Nursing
- University of Colorado at Denver and Health Sciences Center
- Barry Yeoman, Going Home, AARP: The Magazine
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