Palliative care

Palliative care (from Latin palliare, to cloak) is a specialized area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual, and social concerns that arise with advanced illness.

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 a broken leg or 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 patients. Treatments for the alleviation of symptoms were viewed as hazardous and seen as inviting addiction and other unwanted side effects.^[1]

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,^[2] and nearly one-fifth of community hospitals have palliative-care programs.^[3] A relatively recent development is the concept of a dedicated health care team that is entirely geared toward palliative treatment: a palliative-care team.

Scope of the term

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness — whatever the prognosis. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

A World Health Organization statement^[4] 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.

Palliative care:

• provides relief from pain, shortness of breath, nausea, and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten nor to 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.

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.^[5]

Comparison with hospice in the United States

In the United States, hospice services and palliative care programs share similar goals of providing symptom relief and pain management.^[6] 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 in patients with a prognosis of 6 months or less to live.

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.^[2]

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 NTNU’s 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.

Practice

Assessment of symptoms

A method for the assessment of symptoms in patients admitted palliative care is the Edmonton Symptoms Assesment 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,^[9] sometimes with the addition of shortness of breath.^[10] On the scales, 0 means that the symptom is absent and 10 that it is of worst possible severity.^[10] It is completed either by the patient alone, by the patient with nurse's assistance, or by the nurses or relatives.^[9]

Symptom management

Further information: Symptom management in end-of-life-care

Medications used for palliative patients are used differently than standard medications, based on established practices with varying degrees of evidence.^[11] 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 patients 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, subcutaneous, intramuscular and transdermal. Medications are often managed at home by family or nursing support.^[12]

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.^[13] 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 counsellor 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.

Provision of services

See also: Hospice care in the United States

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 counselling to the patient's partner or family should he die.

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 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.

Involved people

In most countries hospice and palliative care is provided by an interdisciplinary team consisting of physicians, registered nurses, nursing assistants, social workers, hospice chaplains, pharmacists, 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 United States, the physician subspecialty of Hospice and Palliative Medicine was established in 2006,^[14] to provide expertise in the care of patients with life-limiting, advanced disease and catastrophic injury; the relief of distressing symptoms; the coordination of interdisciplinary patient and family-centered 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.^[15]

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).

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 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.^[16]

Funding

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 B (acute hospital payment) and enrolls 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 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.

Internet resources

Some professionals in palliative care use the internet as a resource for their work.^[17] More recently palliative care professionals have taken advantage of e-learning opportunities^[18] and other online technical assistance.

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

Many healthcare professionals in the US are required to perform a certain number of continuing education (CE, CPE, CME) credits on Palliative Care. This is state-specific as well as discipline specific. online resources

See also

• Children's hospice
• Elderly care
• Elisabeth Kübler-Ross
• Florence Wald
• Hospice and Palliative Medicine
• Hospice chaplain
• Medical social work
• Pain management
• Patient safety
• Robert Twycross
• Russell and Fern de Greeff Hospice House
• Symptomatic treatment
• Terminal sedation

Footnotes

1. ^ 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. 
2. ^ ^{a b} Center to Advance Palliative Care, www.capc.org
3. ^ 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. 
4. ^ "WHO Definition of Palliative Care". World Health Organization. http://www.who.int/cancer/palliative/definition/en/. Retrieved March 7, 2006. 
5. ^ 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): 109–18. doi:10.1016/0885-3924(94)90163-5. PMID 7517428. 
6. ^ 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. 
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): 1054–61. doi:10.1001/jama.2010.258. PMID 20233823. 
8. ^ Temel, J.S., et al, Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer, N Engl J Med 2010; 363:733-742, August 19, 2010, http://www.nejm.org/doi/full/10.1056/NEJMoa1000678
9. ^ ^{a b} Bruera, E.; Kuehn, N.; Miller, M. J.; Selmser, P.; MacMillan, K. (1991). "The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients". Journal of palliative care 7 (2): 6–9. PMID 1714502.  edit
10. ^ ^{a b} Edmonton Symptom Assessment System (ESAS) from Cancer Care Ontario. Revised 2005 February
11. ^ Currow D, Agar MR, Abernethy AP (2011). "Tackling the Challenges of Clinical Trials in Palliative Care". Pharm Med 25 (1): 7–15. doi:10.2165/11539790-000000000-00000. http://adisonline.com/pharmaceuticalmedicine/Abstract/2011/25010/Tackling_the_Challenges_of_Clinical_Trials_in.2.aspx. 
12. ^ Caresearch: Palliative care knowledge network. "Palliative Medications" <http://www.caresearch.com.au/caresearch/ProfessionalGroups/NursesHubHome/Clinical/MedicationManagement/PalliativeMedications/tabid/1554/Default.aspx> Retrieved October 28, 2010.
13. ^ Strang P, Strang S, Hultborn R, Arnér S (March 2004). "Existential pain—an entity, a provocation, or a challenge?". J Pain Symptom Manage 27 (3): 241–50. doi:10.1016/j.jpainsymman.2003.07.003. PMID 15010102. 
14. ^ American Board of Medical Specialties, ABMS Establishes New Subspecialty Certificate in Hospice and Palliative Medicine [1], October 6, 2006, accessed 11/9/2010.
15. ^ American Board of Medical Specialties, ABMS Guide to Physician Specialties [2], 2011, p. 2, accessed 11/9/2010.
16. ^ American Academy of Hospice and Palliative Medicine
17. ^ 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): 59–68. doi:10.1016/S0885-3924(98)00022-0. PMID 9707658. 
18. ^ Becker R (2009)."Online courses for nurses working in palliative care". European Journal of Palliative Care 16: 94-97.

External links

• Family Caregiver's Guide to Hospice and Palliative Care
• Palliative Care Nursing at the Open Directory Project
• ACT A UK wide charity working to achieve the best possible quality of life and care for every child and young person who is not expected to reach adulthood.
• NCPC The UK national council for palliative care.
• A day in the life of a nurse.. an Oncology Nurse working in palliative care