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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 striving to halt, delay, or reverse progression of the disease itself or provide 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.

In the United States, a distinction is made between general palliative care and hospice care, which delivers palliative care to those at the end of life; the two aspects of care share a similar philosophy but differ in their payment systems and location of services. Elsewhere, for example in the United Kingdom, this distinction is not operative: in addition to specialized hospices, non-hospice-based palliative care teams provide care to those with life-limiting illness at any stage of disease.

Contents

[edit] Concept

A recent World Health Organization statement[1] describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." More generally, however, the term "palliative care" may refer to any care that alleviates symptoms, whether or not there is hope of a cure by other means; thus, 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, HIV/AIDS, and 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.

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

The focus on a patient's quality of life has increased greatly during the past twenty years. In the United States today, 55% of hospitals with more than 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: a palliative-care team.

[edit] Comparison to hospice

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] Non-hospice palliative care 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. In contrast, although hospice care is also palliative, the term hospice applies to care administered towards the end of life.

Palliative care:

  • provides relief from pain and other distressing symptoms;
  • affirms life and regards dying as a normal process;
  • intends neither to hasten or postpone death;
  • integrates the psychological and spiritual aspects of patient care;
  • offers a support system to help patients live as actively as possible;
  • offers a support system to help the family cope;
  • uses a team approach to address the needs of patients and their families;
  • will enhance quality of life;
  • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy.

[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 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.[6]

[edit] History

Palliative care began in the hospice movement and is now widely used outside of traditional hospice care. 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.

The hospice movement has grown dramatically in recent years. 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 & 2004. 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 volunteer-led movement 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. Most 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 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 1400. 80% of US Hospitals with more than 300 beds have a program.[3]

A 2010 study regarding the availability of palliative care in 120 US cancer center hospitals reported the following: Only 23% of the centers have beds that are dedicated to palliative care; 37% offer inpatient hospice; 75% have a median time of referral to palliative care to the time of death of 30 to 120 days; Research programs, palliative care fellowships, and mandatory rotations for oncology fellows were uncommon.[7]

The results of a 2010 study in The New England Journal of Medicine showed that lung cancer patients receiving early palliative care experienced less depression, increased quality of life and survived 2.7 months longer than those receiving standard oncologic care.[8]

Hospital palliative care programs today care for non-terminal patients as well as hospice patients. The Patient Protection and Affordable Care Act currently being debated by house and senate would seek to expand palliative care in the U.S.

The first pan-European centre devoted to improving patient palliative care and end of life care was established in Trondheim, Norway in 2009. The centre is based at NTNUâs Faculty of Medicine and at St. Olavs Hospital/Trondheim University Hospital, and coordinate efforts between groups and individual researchers across Europe, specifically Scotland, England, Italy, Denmark, Germany and Switzerland, along with the USA, Canada and Australia.

[edit] 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, nursing assistants, social workers, hospice chaplains, physiotherapists, occupational therapists, complementary therapists, volunteers, and, most important, the family. The team's focus 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), and housekeepers.

In the UK palliative care services offer inpatient care, home care, day care, and outpatient services, 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 without restriction to disease or prognosis. Hospice care under the Medicare Hospice Benefit, however, 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, though, 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. Caregivers and patients often form lasting friendships over the course of care. As a consequence 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 last a few hours 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 range of care. This may range from managing the physical symptoms in patients receiving treatment for cancer, to 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. Most hospice organizations offer bereavement counseling to the patient's partner or family should he die.

In the US board certification for physicians in palliative care was through the American Board of Hospice and Palliative Medicine; recently this was changed to be done through any of 11 different specialty boards through an ABMS-approved procedure. More than 50 fellowship programs provide 1â2 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.[9]

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 withdraw from the MHB and return to Medicare Part A and later re-enroll in hospice.

The first pan-European centre devoted to improving patient palliative care and end of life care was established in Trondheim, Norway in 2009. The centre is based at NTNUâs Faculty of Medicine and at St. Olavs Hospital/Trondheim University Hospital, and coordinate researchers across Europe, specifically Scotland, England, Italy, Denmark, Germany and Switzerland, along with the USA, Canada and Australia.

[edit] 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 Cicely Saunders, and now widely used, for instance by authors like Twycross or Woodruff.[10] 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.

[edit] Internet resources

Some professionals in palliative care use the internet as a resource for their work.[11] More recently palliative care professionals have taken advantage of e-learning opportunities[12] and other online technical assistance.

Patients and families also have online resources including a Provider Directory of hospital palliative care programs.

[edit] See also

[edit] Footnotes

  1. ^ "WHO Definition of Palliative Care". World Health Organization. http://www.who.int/cancer/palliative/definition/en/. Retrieved March 7, 2006. 
  2. ^ Seymour, J. E; D. Clark, M. Winslow (2004). "Morphine use in cancer pain: from 'last resort' to 'gold standard'. Poster presentation at the Third research Forum of the European Association of Palliative Care". Palliative Medicine 18 (4): 378. 
  3. ^ a b Center to Advance Palliative Care, www.capc.org
  4. ^ Joanne Lynn (2004). Sick to death and not going to take it anymore!: reforming health care for the last years of life. Berkeley: University of California Press. p. 72. ISBN 0-520-24300-5. 
  5. ^ Hill RR (2007). "Clinical pharmacy services in a home-based palliative care program". Am J Health Syst Pharm 64 (8): 806, 808, 810. doi:10.2146/ajhp060124. PMID 17420193. 
  6. ^ Walsh D, Gombeski W, Goldstein P, Hayes D, Armour M (1994). "Managing a palliative oncology program: the role of a business plan". J Pain Symptom Manage 9 (2): 109. doi:10.1016/0885-3924(94)90163-5. PMID 7517428. 
  7. ^ Hui D, Elsayem A, De la Cruz M, et al. (March 2010). "Availability and integration of palliative care at US cancer centers". JAMA 303 (11): 1054â61. doi:10.1001/jama.2010.258. PMID 20233823. 
  8. ^ Temel, J.S., et al, Early Palliative Care for Patients with Metastatic NonâSmall-Cell Lung Cancer, N Engl J Med 2010; 363:733-742, August 19, 2010, http://www.nejm.org/doi/full/10.1056/NEJMoa1000678
  9. ^ American Academy of Hospice and Palliative Medicine
  10. ^ Strang P, Strang S, Hultborn R, Arnér S (March 2004). "Existential painâan entity, a provocation, or a challenge?". J Pain Symptom Manage 27 (3): 241â50. doi:10.1016/j.jpainsymman.2003.07.003. PMID 15010102. 
  11. ^ Pereira J, Bruera E (July 1998). "The Internet as a resource for palliative care and hospice: a review and proposals". J Pain Symptom Manage 16 (1): 59â68. doi:10.1016/S0885-3924(98)00022-0. PMID 9707658. 
  12. ^ Becker R (2009)."Online courses for nurses working in palliative care". European Journal of Palliative Care 16: 94-97.

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