Palliative care

Palliative care[1] is a multidisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the terminal diagnosis. The goal of such therapy is to improve quality of life for both the person and their family.[2][3] Evidence as of 2016 supports improvement in quality of life.[4]

Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists and other health professionals who work together with the primary care physician and referred specialists and other hospital or hospice staff to provide additional support. It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care or along with curative treatment. Although it is an important part of end-of-life care, it is not limited to that stage. Palliative care can be provided across multiple settings including in hospitals, at home, as part of community palliative care programs, and in skilled nursing facilities. Interdisciplinary palliative care teams work with people and their families to clarify goals of care and provide symptom management, psycho-social, and spiritual support.

Physicians sometimes use the term palliative care in a sense meaning palliative therapies without curative intent, when no cure can be expected (as often happens in late-stage cancers). For example, tumor debulking can continue to reduce pain from mass effect even when it is no longer curative. A clearer usage is palliative, noncurative therapy when that is what is meant, because palliative care can be used along with curative or aggressive therapies.

Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying disease or cause. This can include treating nausea related to chemotherapy or something as simple as morphine to treat the pain of broken leg or ibuprofen to treat aching related to an influenza (flu) infection. Although the concept of palliative care is not new, most physicians have traditionally concentrated on trying to cure people.

Medical uses

Palliative care is given to people who have any serious illness and who have physical, psychological, social, or spiritual distress as a result of the treatment they are seeking or receiving.[5] Palliative care increases comfort by lessening pain, controlling symptoms, and lessening stress for the patient and family, and should not be delayed when it is indicated.[5] Evidence shows that end-of-life communication interventions decrease utilization (such as length of stay), particularly in the intensive care unit setting,[6] and that palliative care interventions (mostly in the outpatient setting) are effective for improving patient and caregiver perceptions of care.[7]

Palliative care is not reserved for people in end-of-life care and can improve quality of life, decrease depressive symptoms, and increase survival time.[5] If palliative care is indicated for a person in an emergency department, then that care should begin in the emergency department immediately and with referral to additional palliative care services.[8] Emergency care physicians often are the first medical professionals to open the discussion about palliative care and hospice services with people needing care and their families.[8][9]

In some cases, medical specialty professional organizations recommend that sick people and physicians respond to an illness only with palliative care and not with a therapy directed at the disease. The following items are indications named by the American Society of Clinical Oncology as characteristics of a person who should receive palliative care but not any cancer-directed therapy.[10][11]

  1. people who have a [[[performance status|limited ability to care for themselves]][10]
  2. people who received no benefit from prior evidence-based treatments[10]
  3. people who are ineligible to participate in any appropriate clinical trial[10]
  4. the physician sees no strong evidence that treatment would be effective[10]

These characteristics may be generally applicable to other disease conditions besides cancer.

Scope of the term

Palliative care is a term derived from Latin palliare, "to cloak." It refers to specialised medical care for people with serious illnesses. It is focused on providing people with relief from the symptoms, pain and stress of a serious illness — whatever the prognosis.[12] The goal is to improve quality of life for both the sick person and the family as they are the central system for care.

A World Health Organization statement[13] 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.

While palliative care may seem to offer a broad range of services, the goals of palliative treatment are 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.[14]

Starting in 2006 in the United States, palliative medicine is now a board certified sub-speciality of internal medicine with specialised fellowships for physicians who are interested in the field.[15]

Comparison with hospice

In the United States, a distinction should be made between palliative care and hospice care. Hospice services and palliative care programs share similar goals of providing symptom relief and pain management.[16] Palliative care services can be 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.

Hospice is a type of care involving palliation without curative intent. Usually, it is used for people with no further options for curing their disease or in people who have decided not to pursue further options that are arduous, likely to cause more symptoms, and not likely to succeed. Hospice care under the Medicare Hospice Benefit requires that two physicians certify that a person has less than six months to live if the disease follows its usual course. This does not mean, though, that if a person is still living after six months in hospice he or she will be discharged from the service.

The philosophy and multi-disciplinary team approach are similar with hospice and palliative care, and indeed the training programs and many organizations provide both. The biggest difference between hospice and palliative care is the type of illness people have, where they are in their illness especially related to prognosis, and their goals/wishes regarding curative treatment.

Outside the United States there is generally no such division of terminology or funding, and all such care with a primarily palliative focus, whether or not for people with a terminal illness, is usually referred to as palliative care.

Outside the United States the term hospice usually refers to a building or institution which specializes in palliative care, rather than to a particular stage of care progression. Such institutions may predominantly specialize in providing care in an end-of-life setting; but they may also be available for people with other specific palliative care needs.

Practice

Assessment of symptoms

A method for the assessment of symptoms in people admitted to palliative care is the Edmonton Symptoms Assessment Scale (ESAS), in which there are eight visual analog scales (VAS) of 0 to 10, indicating the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite and sensation of well-being,[17] sometimes with the addition of shortness of breath.[18] On the scales, 0 means that the symptom is absent and 10 that it is of worst possible severity.[18] It is completed either by the person in need of care alone, by the person with a nurse's assistance, or by the nurses or relatives.[17]

End-of-life care

Medications used in palliative care are used differently from standard medications, based on established practices with varying degrees of evidence.[19] Examples include the use of antipsychotic medications to treat nausea, anticonvulsants to treat pain, and morphine to treat dyspnea. Routes of administration may differ from acute or chronic care, as many people in palliative care lose the ability to swallow. A common alternative route of administration is subcutaneous, as it is less traumatic and less difficult to maintain than intravenous medications. Other routes of administration include sublingual, intramuscular and transdermal. Medications are often managed at home by family or nursing support.[20]

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.[21] Dealing with total suffering involves a broad range of concerns, starting with treating physical symptoms such as pain, nausea and breathlessness with various medications. Usually, the sick person's concerns are pain, fears about the future, loss of independence, worries about their family and feeling like a burden. The interdisciplinary team also often includes a licensed mental health professional, a licensed social worker, or a counselor, as well as spiritual support such as a chaplain, who can play roles in helping people and their families cope. There are five principal methods for addressing patient anxiety in palliative care settings. They are counseling, visualisation, cognitive methods, drug therapy and relaxation therapy. Palliative pets can play a role in this last category.[22]

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 travellers 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.

In the UK in 2005 there were just under 1,700 hospice services consisting of 220 inpatient units for adults with 3,156 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 people in 2003 and 2004.

Hospice in the United States has grown from a volunteer-led movement to a significant part of the health care system. In 2005 around 1.2 million persons 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 consult service was developed by the Wayne State University School of Medicine in 1985 at Detroit Receiving Hospital.[23] The first palliative medicine program in the United States was started in 1987 by Declan Walsh MD at The Cleveland Clinic Cleveland, Ohio.[24] This is a comprehensive integrated program, responsible for several notable innovations in US palliative medicine;[25] the first clinical and research fellowship 1991,[26] acute care palliative medicine inpatient unit 1994, and Chair in palliative medicine 1994. The center was designated as a World Health Organization international demonstration project and accredited by the European Society of Medical Oncology as an Integrated Center of Oncology and Palliative Care. Other programs followed: most notable the Palliative Care Program at the Medical College of Wisconsin (1993); Pain and Palliative Care Service, Memorial Sloan-Kettering Cancer Center (1996); and The Lilian and Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine (1997). Since then there has been a dramatic increase in hospital-based palliative care programs, now numbering more than 1,400. Eighty percent of US hospitals with more than 300 beds have a program.[27]

A 2009 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.[28]

The results of a 2010 study in The New England Journal of Medicine showed that people with lung cancer who received early palliative care in addition to standard oncologic care experienced less depression, increased quality of life and survived 2.7 months longer than those receiving standard oncologic care.[29]

In 2011, The Joint Commission (an independent, not-for-profit organization that accredits and certifies thousands of health care organizations and programs in the United States) began an Advanced Certification Program for Palliative Care that recognizes hospital inpatient programs. In order to obtain this certification, a hospital must show superior care and enhancement of the quality of life for people with serious illness.[30]

The first pan-European center devoted to improving palliative care and end-of-life care was established in Trondheim, Norway in 2009. The center is based at NTNU's Faculty of Medicine and at St. Olav's Hospital/Trondheim University Hospital and coordinates efforts between groups and individual researchers across Europe, specifically Scotland, England, Italy, Denmark, Germany and Switzerland, along with the United States, Canada and Australia.

Society

Costs and funding

Families of persons who get a referral to palliative care during a hospitalization incur less costs than people with similar conditions who do not get a palliative care referral.[31]

Funding for hospice and palliative care services varies. In Great Britain and many other countries all palliative care is offered free, 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 person signs off their Medicare Part B (acute hospital payment) and enrols in the MHB through Medicare Part B 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 person for services. The hospice agency, together with the person'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. People may elect to withdraw from the MHB and return to Medicare Part A and later re-enrol in hospice.

Certification and training for services

In most countries hospice and palliative care is provided by an interdisciplinary team consisting of physicians, pharmacists, registered nurses, nursing assistants, social workers, hospice chaplains, physiotherapists, occupational therapists, complementary therapists, volunteers, and, most importantly, the family. The team's focus is to optimize the person'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 United States, the physician subspeciality of hospice and palliative medicine was established in 2006[32] to provide expertise in the care of people with life-limiting, advanced disease, and catastrophic injury; the relief of distressing symptoms; the coordination of interdisciplinary care in diverse settings; the use of specialized care systems including hospice; the management of the imminently dying patient; and legal and ethical decision making in end-of-life care.[33]

Caregivers, both family and volunteers, are crucial to the palliative care system. Caregivers and people being treated 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 by placing the primary person being cared for in a nursing home or inpatient hospice unit for several days).[34]

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 speciality boards through an American Board of Medical Specialties-approved procedure. Additionally, board certification is available to osteopathic physicians (D.O.) in the United States through four medical speciality boards through an American Osteopathic Association Bureau of Osteopathic Specialists-approved procedure.[35] More than 50 fellowship programs provide one to two years of speciality training following a primary residency. In Britain palliative care has been a full speciality of medicine since 1989 and training is governed by the same regulations through the Royal College of Physicians as with any other medical speciality.[36] Nurses, in the United States and internationally, can receive continuing education credits through Palliative Care specific trainings, such as those offered by End-of-Life Nursing Education Consortium (ELNEC) [37]

In India Tata Memorial Centre, Mumbai has started a physician course in palliative medicine for the first time in the country since 2012.

Regional variation in services

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 unit. 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.[38] In contrast over 80% of hospice care in the US is provided at home with the remainder provided to people in long-term care facilities or in free standing hospice residential facilities. In the UK hospice is seen as one part of the speciality of palliative care and no differentiation is made between 'hospice' and 'palliative care'.

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 children and adults. In 2015 the UK's palliative care was ranked as the best in the world "due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue."[39]

Acceptance

The focus on a person's quality of life has increased greatly since the 1990s. In the United States today, 55% of hospitals with more than 100 beds offer a palliative-care program,[27] and nearly one-fifth of community hospitals have palliative-care programs.[40] A relatively recent development is the palliative-care team, a dedicated health care team that is entirely geared toward palliative treatment.

Physicians practicing palliative care do not always receive support from the people they are treating, family members, healthcare professionals or their social peers. More than half of physicians in one survey reported that they have had at least one experience where a patient's family members, another physician or another health care professional had characterised their work as being "euthanasia, murder or killing" during the last five years. A quarter of them had received similar comments from their own friends or family member, or from a patient.[41]

See also

References

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  2. ↑ Ferrell B, Connor SR, Cordes A, et al. (June 2007). "The national agenda for quality palliative care: the National Consensus Project and the National Quality Forum". J Pain Symptom Manage. 33: 737–44. PMID 17531914. doi:10.1016/j.jpainsymman.2007.02.024.
  3. ↑ "Get Palliative Care". Get Palliative Care. Retrieved 21 November 2014.
  4. ↑ Kavalieratos, Dio; Corbelli, Jennifer; Zhang, Di; Dionne-Odom, J. Nicholas; Ernecoff, Natalie C.; Hanmer, Janel; Hoydich, Zachariah P.; Ikejiani, Dara Z.; Klein-Fedyshin, Michele; Zimmermann, Camilla; Morton, Sally C.; Arnold, Robert M.; Heller, Lucas; Schenker, Yael (22 November 2016). "Association Between Palliative Care and Patient and Caregiver Outcomes". JAMA. 316 (20): 2104. doi:10.1001/jama.2016.16840.
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    • for lung cancer, see Azzoli CG, Temin S, Aliff T, Baker S, Brahmer J, Johnson DH, Laskin JL, Masters G, Milton D, Nordquist L, Pao W, Pfister DG, Piantadosi S, Schiller JH, Smith R, Smith TJ, Strawn JR, Trent D, Giaccone G (2011). "2011 Focused Update of 2009 American Society of Clinical Oncology Clinical Practice Guideline Update on Chemotherapy for Stage IV Non-Small-Cell Lung Cancer". Journal of Clinical Oncology. 29 (28): 3825–3831. PMC 3675703 Freely accessible. PMID 21900105. doi:10.1200/JCO.2010.34.2774. and Ettinger DS; Akerley W; Bepler G; Blum MG; Chang A; Cheney RT; Chirieac LR; D'Amico TA; et al. (2010). "Non-small cell lung cancer". Journal of the National Comprehensive Cancer Network : JNCCN. 8 (7): 740–801. PMID 20679538.
    • for breast cancer, see Carlson RW; Allred DC; Anderson BO; Burstein HJ; Carter WB; Edge SB; Erban JK; Farrar WB; et al. (2009). "Breast cancer. Clinical practice guidelines in oncology". Journal of the National Comprehensive Cancer Network : JNCCN. 7 (2): 122–192. PMID 19200416.
    • for colon cancer, see Engstrom PF, Arnoletti JP, Benson AB, Chen YJ, Choti MA, Cooper HS, Covey A, Dilawari RA, Early DS, Enzinger PC, Fakih MG, Fleshman J, Fuchs C, Grem JL, Kiel K, Knol JA, Leong LA, Lin E, Mulcahy MF, Rao S, Ryan DP, Saltz L, Shibata D, Skibber JM, Sofocleous C, Thomas J, Venook AP, Willett C (2009). "NCCN Clinical Practice Guidelines in Oncology: Colon cancer". Journal of the National Comprehensive Cancer Network : JNCCN. 7 (8): 778–831. PMID 19755046.
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  27. 1 2 Center to Advance Palliative Care, www.capc.org
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  37. ↑ Ferrell Betty R.; et al. (2005). "Evaluation of the End-of-Life Nursing Education Consortium undergraduate faculty training program". Journal of palliative medicine. 8 (1): 107–114. doi:10.1089/jpm.2005.8.107.
  38. ↑ "In-Home Palliative Care Allows More Patients to Die at Home, Leading to Higher Satisfaction and Lower Acute Care Utilization and Costs". Agency for Healthcare Research and Quality. 2013-04-03. Retrieved 2013-07-09.
  39. ↑ "Quality of Death Index 2015: Ranking palliative care across the world". The Economist Intelligence Unit. 6 October 2015. Retrieved 8 October 2015; "UK end-of-life care 'best in world'". BBC. 6 October 2015. Retrieved 8 October 2015.
  40. ↑ 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.
  41. ↑ Goldstein NE; Cohen LM; Arnold RM; Goy E; Arons S; Ganzini L (March 2012). "Prevalence of Formal Accusations of Murder and Euthanasia against Physicians". J Palliat Med. 15 (3): 334–9. PMC 3295854 Freely accessible. PMID 22401355. doi:10.1089/jpm.2011.0234.
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