Palliative care is a holistic, multi-disciplinary approach that includes specialised medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. 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.
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.
Starting in 2006 in the United States, Palliative Medicine is now a board certified sub-speciality of Internal Medicine with specializied fellowships for physicians who are interested in the field. However, along with physicians, palliative care utilizes a multidisciplinary approach to patient care, relying on input from 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 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 patients. Treatments for the alleviation of symptoms were viewed as hazardous and seen as inviting addiction and other unwanted side effects.
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, and nearly one-fifth of community hospitals have palliative-care programs. A relatively recent development is the palliative-care team, a dedicated health care team that is entirely geared toward palliative treatment.
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 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 as they are the central system for care.
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 Organisation statement 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 paediatric 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.
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. Palliative care services can be offered to any patient without restriction to disease or prognosis, and 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 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.
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 patient: 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 patients with terminal illness, is usually referred to as palliative care.
Outside the United States the term hospice usually refers to a building or institution which specialises in palliative care, rather than to a particular stage of care progression. Such institutions may predominantly specialise in providing care in an end-of-life setting; but they may also be available for patients with other specific palliative care needs.
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.
The hospice movement has grown dramatically in recent years. 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 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 a significant part of the health care system. In 2005 more than 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 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 1,400. 80% of US hospitals with more than 300 beds have a program.
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.
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.
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.
In 2011 The Joint Commission (an independent, not-for-profit organization who 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 patient and family-centered care and enhancement of the quality of life for patients with serious illness.
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. 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 USA, Canada and Australia.
Immediate palliative care is indicated for patients with any serious illness and who have physical, psychological, social, or spiritual distress as a result of the treatment they are seeking or receiving. 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. Palliative care is not reserved for patients in end-of-life care and can increase quality of life and lengthen the patient’s life. 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. Emergency care physicians have a unique and critical position to begin discussions with patients and caregivers about palliative care and hospice services as they see persons in difficult times of life.
In some cases, medical specialty professional organizations recommend that patients 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 patient who should receive palliative care but not any cancer-directed therapy.
- patient has low performance status, corresponding with limited ability to care for oneself
- patient received no benefit from prior evidence-based treatments
- patient is ineligible to participate in any appropriate clinical trial
- the physician sees no strong evidence that treatment would be effective
These characteristics may be generally applicable to other disease conditions besides cancer.
Assessment of symptoms
A method for the assessment of symptoms in patients 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, sometimes with the addition of shortness of breath. On the scales, 0 means that the symptom is absent and 10 that it is of worst possible severity. It is completed either by the patient alone, by the patient with nurse’s assistance, or by the nurses or relatives.
Medications used for palliative patients are used differently from standard medications, based on established practices with varying degrees of evidence. 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, intramuscular and transdermal. Medications are often managed at home by family or nursing support.
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. 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 registered nurse, a licensed mental health professional, a licensed social worker or a counselor and spiritual support such as 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. 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. (Pets as such may also receive palliative care at the end of their lives.) For animal lovers approaching the end of life, contact with the familiar positive interactions with pets helps to normalise the hospice environment and reduce anxiety. Even for patients whose cognitive abilities have been hampered by illnesses such as Alzheimer’s disease, clinical research has shown that the presence of a therapy dog enhanced nonverbal communication as shown by increases in looks, smiles, tactile contact and physical warmth.
Physicians practicing palliative care do not always receive support from patients, family members, healthcare professionals or their social peers for their work to reduce suffering and follow patients’ wishes for end-of-life care. More than half of physicians in one survey reported that a patient’s family members, another physician or another health care professional had characterized 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.
Costs and funding
Families of persons who get a referral to palliative care during a hospitalization incur less costs than similar patients who do not get a palliative care referral.
Funding for hospice and palliative care services varies. In Great Britain 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.
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 important, the family. The team’s focus is to optimise 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, 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-centred care in diverse settings; the use of specialised care systems including hospice; the management of the imminently dying patient; and legal and ethical decision making in end-of-life care.
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 American Board of Medical Specialties-approved procedure. Additionally, board certification is available to osteopathic physicians (D.O.) in the United States through four medical specialty boards through an American Osteopathic Association Bureau of Osteopathic Specialists-approved procedure. More than 50 fellowship programs provide 1–2 years of specialty training following a primary residency. In Britain 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.
In India Tata Memorial Centre, Mumbai has started a MD course in palliative medicine for the first time in the country since 2012.
Regional variation in services
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 organisations offer grief counseling 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 organised 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’. The goal of palliative care and hospice are both entirely based on comfort of the patient and not on curative treatments. This allows the patient to live the last of their days comfortably and surrounded by their family and friends rather than in an Intensive Care Unit (ICU). Some of the major reasons people don’t have knowledge of these options are the reluctance of doctors to have difficult EOL discussions with patients, language/cultural barriers, and the lack of universal protocol regarding documentation of a person’s EOL wishes. Even though most doctors would choose to not be on life-support, ventilators, feeding tubes, etc. they still find themselves not discussing alternatives to patients for many reasons. Some cultures prefer to not avoid talking openly about death because they feel it is disrespectful, and poor translation of words like “hospice” have entirely different meanings in languages like Spanish, which makes hospice and palliative care less accessible to people of their culture. If more states required Physician Orders for Life-Sustaining Treatment (POLST), it would provide a more comfortable atmosphere for physicians to openly have EOL discussions with patients and their families. More education on communication barriers cross-culturally regarding topics of EOL care is needed and would be mandated if POLST was required for every person suffering from terminal illness. Millions of dollars annually would be saved from reduced stays in the ICU and more people would spend their last days in the manner they choose.
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 paediatric 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 United Kingdom.