Palliative care

**Palliative care** is an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness. The goal is to improve quality of life for both the person and their family. Evidence as of 2016 supports palliative care's efficacy in the improvement of a patient's quality of life.

Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists 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 pain related to an influenza infection.

## 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. 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. Evidence shows that end-of-life communication interventions decrease utilization (such as length of stay), particularly in the intensive care unit setting, and that palliative care interventions (mostly in the outpatient setting) are effective for improving patient and caregiver perceptions of care.

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. 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 often are the first medical professionals to open the discussion about palliative care and hospice services with people needing care and their families.

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.

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

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. 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 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.

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.

### Comparison with hospice

See also: Hospice care in the United States
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 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 care focuses on five topics: communication, collaboration, compassionate caring, comfort, and cultural (spiritual) care. The end of life treatment in hospice differs from that in hospitals because the medical and support staff are specialized in treating only the terminally ill. This specialization allows for the staff to handle the legal and ethical matters surrounding death more thoroughly and efficiently with survivors of the patient. Hospice comfort care also differentiates because patients are admitted to continue managing discomfort relief treatments while the terminally ill receiving comfort care in a hospital are admitted because end-of-life symptoms are poorly controlled or because current outpatient symptom relief efforts are ineffective.

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.

### Comfort care in hospitals

Despite the fact that many individuals are now dying either at home or in a care facility, as of 2010, 29% of all deaths in the United States occurred in a hospital setting, these statistics increased in 2016 to about 60% of all deaths occurred in the hospital which is a substantial increase from 2010. which is still a rather substantial percentage. Comfort care can require meticulous techniques to alleviate distress caused by severe health troubles near the end of life. Doctors, nurses, nurses aides, social workers, chaplains, and other hospital support staff work systematically together to carry out end of life care and comfort in the hospital setting. Hospitals are able to accommodate the demand for acute medical attention as well as education and supportive therapies for the families of their loved ones. Within hospital settings, there is an increasing shortage of board-certified palliative care specialists. This shortage results in the responsibility of comfort care falling on the shoulders of other individuals.

Comfort care in hospitals differs from comfort care in hospices because patients’ end-of-life symptoms are poorly controlled prior to checking in. The average time between the admission of a terminally ill patient and death is 7.9 days. Patients receiving end of life care in a hospice setting typically have a longer time between their admission and death; 60% of hospice patients passed within approximately 30 days of being admitted. The average length of stay at a hospice house from admission to death is about 48 hours.

## 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, 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 person in need of care alone, by the person with a nurse's assistance, or by the nurses or relatives.

### End-of-life care

Further information: End-of-life care
Medications used in palliative care 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 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.

Palliative care interventions in care homes may contribute to lower discomfort for residents with dementia, and to improve family member's views of the quality of care. However, higher quality research is needed to support the benefits of these interventions for older people dying in these facilities.

### Dealing with distress

See also: Distress in cancer caregiving
For many, knowing that the end of life is approaching induces various forms of emotional and psychological distress. The key to effective palliative care is to provide a safe way for the individual to address their distresses, that is to say their *total suffering*, a concept first introduced by Cicely Saunders as total pain, 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 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.

### 'Total Pain'

In palliative, hospice and end-of-life care, health professionals may think of their patient's experience in terms of 'total pain'. This is the idea that a patient's experience of pain is made up of physical, psychological, social, and spiritual components, although this is a ‘somewhat artificial division of a whole overwhelming experience’, and other components are sometimes also used. The term was first introduced by the hospice pioneer Cicely Saunders in the early 1960s, and is still used by many working in the field today.

Total pain is all the pain you have and understands how a person's physical pain cannot be separated by other problems in their life such as non-pain symptoms like vomiting, incontinence or mobility issues, as well as emotional problems related either to the drugs or treatments they are undergoing or the fact that they are dying. It also acknowledges how social issues such as financial or childcare problems or worrying about the future affect how someone experiences their pain.

When someone is at the end of their life and they are seeking comfort care, the majority of the time they are in excruciating pain. This pain can be a physical manifestation to where their body is beginning to fight back on itself causing a multitude of physical symptoms. The pain can be in a psychosocial manifestation and can be dealt with by the medical team having open communication about how to cope with and prepare for death. The last aspect of pain that is included in Total Body Pain is the spiritual pain manifestation; if patients spiritual needs are met, then studies show that they will be more likely to get hospice care. Addressing the needs of the Total Body Pain can lead to a better quality of life overall for the patients.

#### Physical pain

The Physical pain can be managed in a way that uses adequate pain medications as long as they will not put the patient at further risk for developing or increasing medical diagnoses such as heart problems or difficulty breathing. Patients at the end of life can exhibit many physical symptoms that can cause extreme pain such as dyspnea (or difficulty breathing), Coughing, Xerostomia (Dry Mouth), Nausea and Vomiting, Constipation, Fever, Delirium, Excessive Oral and Pharyngeal Secretions (“Death Rattle”) and many more painful symptoms can be seen that they are hoping to get some pain relief from.

#### Psychosocial pain

Once the immediate physical pain has been dealt with, it is important to remember to be a compassionate and empathetic caregiver that is there to listen and be there for their patients. Being able to identify the distressing factors in their life other than the pain can help them be more comfortable. When a patient has their needs met then they are more likely to be open to the idea of hospice or treatments outside of comfort care. Having a Psychosocial assessment allows the medical team to help facilitate a healthy patient-family understanding of adjustment, coping and support. This communication between the medical team and the patients and family can also help facilitate discussions on the process of maintaining and enhancing relationships, finding meaning in the dying process, and achieving a sense of control while confronting and preparing for death.

#### Spiritual pain

When a patient is at the end of life, one of the most important things that a lot of them want to talk to their physicians about is their spirituality. Regardless of this desire, less than 50% of physicians believe that it is their job to address these religious concerns, and only a minority of patients have been recorded to have had their spiritual needs met. According to a multiple site cohort study involving 343 advanced cancer patients, it was found that those who had their religious needs met were more likely than those who did not have their religious needs met to go through with more hospice care and to not get unnecessary treatments at the end of life, as well as the study showed that they ended up having higher quality of life scores than those who did not have their spiritual needs met.

## Children's palliative care

Palliative care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child's life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person, and support for the whole family. It includes the management of distressing symptoms, provision of short breaks, end of life care and bereavement support.

Palliative care can be introduced at any point throughout a child's life; it is completely individual. Some children may require palliative care from birth, others only as their condition deteriorates. Families may also vary as to whether they wish to pursue treatments aimed to cure or significantly prolong life. In practice, palliative care should be offered from diagnosis of a life-limiting condition or recognition that curative treatment for a life-threatening condition is not an option; however, each situation is different and care should be tailored to the child.

### Terminology

* **Life-limiting/life-shortening conditions** are those for which there is no reasonable hope of cure and from which children or young people will die. Some of these conditions cause progressive deterioration rendering the child increasingly dependent on parents and carers.
* **Life-threatening conditions** are those for which curative treatment may be feasible but can fail, such as cancer. Children in long-term remission or following successful curative treatment are not included.

### Children's palliative care (by country)

#### UK

There are an estimated 49,000 children and young people in the UK living with a life-threatening or life-limiting condition that may require palliative care services. A 2015 survey from the Royal College of Nursing (RCN) found that nearly a third of children's nurses said they don't have the resources to deliver adequate care in the home setting.

#### Australia and New Zealand

The Paediatric Palliative Care Australia and New Zealand Corporation (PPCANZ) in conjunction with Palliative Care Australia supports a 'Paediatric Palliative Care' website which provides practical information about paediatric palliative care to families who have a child with a life-limiting illness, as well as information about the people who support them. There is however very little empirical research regarding the support provided to children in palliative care. To help address the lack of research, the Palliative Care Unit at La Trobe University, Melbourne, Australia, is currently conducting an international modified delphi study to provide 'Recommendations for Speech-Language Pathologist (SLPs) in Paediatric Palliative Care Teams' (*abbrev*. RESP3CT). This study will conclude in 2020/2021 and hopefully provide greater information with regard to the collaborative role of SLPs assisting children, families and clinical staff regarding appropriate and multidisciplinary palliative care.

## 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. Dame Cicely Saunders, went to St.Thomas’ Hospital in 1944 to become a nurse. After working with the terminally ill she went and became a doctor in 1957 so that she could start her own hospice. Dr. Cicely Saunders then opened her own hospice after she saw all of the terminally ill patients that she nursed in excruciating pain because their pain was not being managed like it should have been.

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. The first palliative medicine program in the United States was started in 1987 by Declan Walsh, MD at the Cleveland Clinic Cancer Center in Cleveland, Ohio. This is a comprehensive integrated program, responsible for several notable innovations in US palliative medicine; the first clinical and research fellowship (1991), acute care palliative medicine inpatient unit (1994), and Chair in Palliative Medicine (1994). The program evolved into The Harry R. Horvitz Center for Palliative Medicine which was designated as a World Health Organization international demonstration project and accredited by the European Society for 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.

A widely cited report in 2007 of a randomized controlled trial with 298 patients found that palliative care delivered to patients and their caregivers at home improved satisfaction with care while decreasing medical service use and the cost of care.

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 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. The survival advantage was replicated in a subsequent meta-analysis of randomized clinical trials in the outpatient oncology setting.

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.

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.

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 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 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 care 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. In some countries, additional members of the team may include certified nursing assistants and home healthcare aides, as well as 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 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.

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).

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. 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. 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)

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

See also: Hospice care in the United States
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. 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."

### 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, 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.

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.