Palliative care (derived from the Latin root palliare, or “to cloak”) refers to an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex illness. Within the published literature, many definitions of palliative care exist; most notably, the World Health Organization 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.”
Palliative care is appropriate for individuals with serious illnesses across the age spectrum and can be provided as the main goal of care or in tandem with curative treatment. It is provided by an interdisciplinary team which can include physicians, nurses, occupational and physical therapists, speech-language pathologists, psychologists, social workers, chaplains, and dietitians. Palliative care can be provided in a variety of contexts including hospitals, outpatient, skilled-nursing, and home settings. Although an important part of end-of-life care, palliative care is not limited to individuals near the end-of-life.
Historically, palliative care services were geared to supporting individuals with incurable cancer but this framework of medical therapy is now applied to the management of various disease processes including severe heart failure, chronic obstructive pulmonary disease, neurological conditions such as multiple sclerosis, and, motor neuron disease, various dementias, and acquired immune deficiency syndrome.
Palliative care is appropriate for anyone who has a serious condition that may result in physical, psychological, social, or spiritual distress from the disease process or treatment as the evidence supports it "improves pain and symptom control, improves family satisfaction with care and reduces costs." Palliative care is also not restricted to people receiving end-of-life care and can lengthen survival in certain populations.
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 addressing some advanced or terminal conditions should prioritize palliative care if disease-directed options would not improve the patient's trajectory. For example, the American Society of Clinical Oncology recommends palliative and supportive care over cancer-directed therapy for someone who meets these criteria.
- people with a low performance status
- people who received no benefit from prior evidence-based treatments
- people who are ineligible to participate in any appropriate clinical trial
- the physician sees no strong evidence that cancer-directed treatment would be effective
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.
Coined from a derivation of the Latin root palliare, or "to cloak," by Canadian urologist Balfour Mount, palliative care aims to provide individuals experiencing serious illnesses and their support networks with enhanced quality of life, relief from suffering, and support for social, emotional, and spiritual distress. The exact definition and approach to palliative care varies between practice setting and geographic context. Common terms used within the field of palliative care include:
- Life-threatening conditions (LTCs) are illnesses or conditions that pose a grave threat of mortality to an individual for which medical treatment may result in a cure, but may fail.
- Life-shortening conditions (LSCs) are illnesses or conditions for which there is no cure and which are extremely likely to result in early death.
- Palliative care is interdisciplinary care that aims to improve the quality of life of individuals with LTCs and LSCs, seeking to reduce pain and distressing symptoms while also attending to psychological, social, and spiritual needs often inadequately addressed by standard medical care.
- End-of-life care is care provided to individuals who actively dying (within minutes, hours, or days). End-of-life care may or may not be palliative care.
- Hospice is a program or framework of care designed to provide palliative care and emotional support to the terminally ill and their support network.
- Bereavement care is care or grief counseling provided to patients and their support networks (including family, friends, and providers) addressing the experience loss due to the diagnosis or death.
See also: Hospice care in the United States
The distinction between palliative care and hospice differs depending on global context.
In the United States, hospice services and palliative care programs share similar goals of mitigating unpleasant symptoms, controlling pain, optimizing comfort, and addressing psychological distress. Palliative care is potentially appropriate for any individual with an LTCs or LSCs, whatever the prognosis, and can be pursued in tandem with curative therapy. Under the Medicare Hospice Benefit, individuals certified by two physicians to have less than six months to live (assuming a typical course) have access to specialized hospice services through various insurance programs (Medicare, Medicaid, and most health maintenance organizations and private insurers). Hospice care focuses on comfort and psychological support and curative therapies are not pursued. An individual's hospice benefits are not revoked if that individual lives beyond the aforementioned six-month prognostication.
Outside the United States the term hospice usually refers to a building or institution that specializes in palliative care. These institutions provide care to patients with end-of-life and palliative care needs. In the common vernacular outside of the United States, hospice care and palliative care are synonymous and are not contingent on different avenues of funding.
Comfort care in hospitals
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.
Although many individuals die at home or in a care facility, the number of deaths that occurred in a hospital setting increased from 2010 to 2016. In 2010 29% of all deaths in the United States occurred in a hospital setting, but this statistic increased in 2016 to about 60%. 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.
One instrument used in palliative care is the Edmonton Symptoms Assessment Scale (ESAS), which consists of 8 visual analog scales (VAS) ranging from 0 -100 mm, indicating the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, sensation of well-being, and sometimes shortness of breath. A score of 0 indicates absence of the symptom, and a score of 10 indicates the worst possible severity. The instrument can be completed by the patient with or without assistance or by nurses and relatives.
Medications used in palliative care can be common medications but used for a different indication 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
For many patients, end of life care can cause emotional and psychological distress, contributing to their total suffering. An interdisciplinary palliative care team consisting of a mental health professional, social worker, counselor, as well as spiritual support such as a chaplain, can play important roles in helping people and their families cope using various methods such as counseling, visualization, cognitive methods, drug therapy and relaxation therapy to address their needs. Palliative pets can play a role in this last category.
In the 1960s, hospice pioneer Cicely Saunders first introduced the term "total pain" to describe the heterogenous nature of pain. This is the idea that a patient's experience of total pain has distinctive roots in the physical, psychological, social and spiritual realm but that they are all still closely linked to one another. Identifying the cause of pain can help guide care for some patients, and impact their quality of life overall.
Physical pain can be managed using pain medications as long as they do 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”).
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.
Spirituality is a fundamental component of palliative care. According to the Clinical Practice Guidelines for Quality Palliative Care, spirituality is a "dynamic and intrinsic aspect of humanity..." and has been associated with "an improved quality of life for those with chronic and serious illness..." . Spiritual beliefs and practices can influence perceptions of pain and distress, as well as quality of life among advanced cancer patients.
Pediatric Palliative Care
Pediatric Palliative care is family-centered, specialized medical care for children with serious illnesses that focuses on mitigating the physical, emotional, psychosocial, and spiritual suffering associated with illness to ultimately optimize quality of life.
Pediatric palliative care practitioners receive specialized training in family-centered, developmental and age-appropriate skills in communication and facilitation of shared decision making; assessment and management of pain and distressing symptoms; advanced knowledge in care coordination of multidisciplinary pediatric caregiving medical teams; referral to hospital and ambulatory resources available to patients and families; and psychologically supporting children and families through illness and bereavement.
As with adults, pediatric palliative care can be introduced at any point in a child with serious, complex medical illness's life. In practice, palliative care is often offered at the time of diagnosis of a serious medical condition.
Symptoms Assessment and Management of Children
As with palliative care for adults, symptoms assessment and management is a critical component of pediatric palliative care as it improves quality of life, gives children and families a sense of control, and in some cases prolongs life. The general approach to assessment and management of distressing symptoms in children by a palliative care team is as follows:
- Identify and assess symptoms through history taking (focusing on location, quality, time course, as well as exacerbating and mitigating stimuli). Symptoms assessment in children is uniquely challenging due to communication barriers depending on the child’s ability to identify and communicate about symptoms. Thus, both the child and caregivers should provide the clinical history. With this said, children as young as four years of age can indicate the location and severity of pain through visual mapping techniques and metaphors.
- Perform a thorough exam of the child. Special attention to the child's behavioral response to exam components, particularly in regards to potentially painful stimuli. A commonly held myth is that premature and neonatal infants do not experience pain due to their immature pain pathways, but research demonstrates pain perception in these age groups is equal or greater than that of adults. With this said, some children experiencing intolerable pain present with 'psychomotor inertia,' a phenomenon where a child in severe chronic pain presents overly well behaved or depressed. These patients demonstrate behavioral responses consistent with pain relief when titrated with morphine. Finally, because children behaviorally respond to pain atypically, a playing or sleeping child should not be assumed to be without pain.
- Identify the place of treatment (tertiary versus local hospital, intensive care unit, home, hospice, etc.).
- Anticipate symptoms based on the typical disease course of the hypothesized diagnosis.
- Present treatment options to the family proactively, based on care options and resources available in each of the aforementioned care settings. Ensuing management should anticipate transitions of palliative care settings to afford seamless continuity of service provision across health, education, and social care settings.
- Consider both pharmacologic and non-pharmacologic treatment modalities (education and mental health support, administration of hot and cold packs, massage, play therapy, distraction therapy, hypnotherapy, physical therapy, occupational therapy, and complementary therapies) when addressing distressing symptoms.
- Assess how the child perceives their symptoms (based on personal views) to create individualized care plans.
- After the implementation of therapeutic interventions, involve both the child and family in the reassessment of symptoms.
The most common symptoms in children with severe chronic disease appropriate for palliative care consultation are weakness, fatigue, pain, poor appetite, weight loss, agitation, lack of mobility, shortness of breath, nausea and vomiting, constipation, sadness or depression, drowsiness, difficulty with speech, headache, excess secretions, anemia, pressure area problems, anxiety, fever, and mouth sores. The most common end of life symptoms in children include shortness of breath, cough, fatigue, pain, nausea and vomiting, agitation and anxiety, poor concentration, skin lesions, swelling of the extremities, seizures, poor appetite, difficulty with feeding, and diarrhea. In older children with neurologic and neuromuscular manifestations of disease, there is a high burden of anxiety and depression that correlates with disease progression, increasing disability, and greater dependence on carers. From the caregiver's perspective, families find changes in behavior, reported pain, lack of appetite, changes in appearance, talking to God or angels, breathing changes, weakness, and fatigue to be most the most distressing symptoms to witness in their loved ones.
As discussed above, within the field of adult palliative medicine, validated symptoms assessment tools are frequently utilized by providers, but these tools lack essential aspects of children's symptom experience. Within pediatrics, there is not a comprehensive symptoms assessment widely employed. A few symptoms assessment tools trialed among older children receiving palliative care include the Symptom Distress Scale, and the Memorial Symptom Assessment Scale, and Childhood Cancer Stressors Inventor. Quality of life considerations within pediatrics are unique and an important component of symptoms assessment. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32) is a standardized parent-proxy report which assesses cancer treatment-related symptoms (focusing mainly on pain and nausea). But again, this tool does not comprehensively assess all palliative are symptoms issues. Symptom assessment tools for younger age groups are rarely utilized as they have limited value, especially for infants and young children who are not at a developmental stage where they can articulate symptoms.
Communication with Children and Families
Within the realm of pediatric medical care, the palliative care team is tasked with facilitating family-centered communication with children and their families, as well as multidisciplinary pediatric caregiving medical teams to forward coordinated medical management and the child's quality of life. Strategies for communication are complex as the pediatric palliative care practitioners must facilitate a shared understanding of and consensus for goals of care and therapies available to the sick child amongst multiple medical teams who often have different areas of expertise. Additionally, pediatric palliative care practitioners must assess both the sick child and their family's understanding of complex illness and options for care, and provide accessible, thoughtful education to address knowledge gaps and allow for informed decision making. Finally, practitioners are supporting children and families in the queries, emotional distress, and decision making that ensues from the child's illness.
Many frameworks for communication have been established within the medical literature, but the field of pediatric palliative care is still in relative infancy. Communication considerations and strategies employed in a palliative setting include:
- Developing supportive relationships with patients and families. An essential component of a provider's ability to provide individualized palliative care is their ability to obtain an intimate understanding of the child and family's preferences and overall character. On initial consultation, palliative care providers often focus on affirming a caring relationship with the pediatric patient and their family by first asking the child how they would describe themself and what is important to them, communicating in an age and developmentally cognizant fashion. The provider may then gather similar information from the child's caregivers. Questions practitioners may ask include 'What does the child enjoy doing? What do they most dislike doing? What does a typical day look like for the child?' Other topics potentially addressed by the palliative care provider may also include familial rituals as well as spiritual and religious beliefs, life goals for the child, and the meaning of illness within the broader context of the child and their family's life.
- Developing a shared understanding of the child's condition with the patient and their family. The establishment of shared knowledge between medical providers, patients, and families is essential when determining palliative goals of care for pediatric patients. Initially, practitioners often elicit information from the patient and child to ascertain these parties' baseline understanding of the child's situation. Assessing for baseline knowledge allows the palliative care provider to identify knowledge gaps and provide education on those topics. Through this process, families can pursue informed, shared medical decision making regarding their child's care. A framework often employed by pediatric palliative care providers is 'ask, tell, ask' where the provider asks the patient and their family for a question to identify their level of comprehension of the situation, and then subsequently supplements the family's knowledge with additional expert knowledge. This information is often conveyed without jargon or euphemism to maintain trust and ensure understanding. Providers iteratively check for comprehension of this knowledge supplementation by asking questions related to previous explanations, as information retention can be challenging when undergoing a stressful experience.
- Establishing meaning and dignity regarding the child's illness. As part of developing a shared understanding of a child's illness and character, palliative providers will assess both the child and their family's symbolic and emotional relationship to disease. As both the somatic and psychologic implications of illness can be distressing to children, palliative care practitioners look for opportunities to establish meaning and dignity regarding the child's illness by contextualizing disease within a broader framework of the child's life. Derived from the fields of dignity therapy and meaning-centered psychotherapy, the palliative care provider may explore the following questions with the sick child and their family:
- What gives your life meaning, worth, or purpose?
- Where do you find strength and support?
- What inspires you?
- How do you like to be thought of?
- What are you most proud of?
- What are the particular things you would like your family to know or remember about you?
- When was the last time you laughed really hard?
- Are you frightened by all of this? What, in particular, are you most frightened of?
- What is the meaning of this (illness) experience for you? Do you ever think about why this happened to you?
- Assessing preferences for decision making. Medical decision making in a pediatric setting is unique in that it is often the child's legal guardians, not the patient, who ultimately consent for most medical treatments. Yet within a palliative care setting, it is particularly consequential to incorporate the child's preferences within the ultimate goals of care. Equally important to consider, families may vary in the level of responsibility they want in this decision making process. Their preference may range from wanting to be the child's sole decision makers, to partnering with the medical team in a shared decision making model, to advocating for full deferral of decision-making responsibility to the clinician. Palliative care providers clarify a family's preferences and support needs for medical decision making by providing context, information, and options for treatment and medical palliation.
- Optimizing the environment for effective conversations around prognosis and goals of care. Essential to facilitating supportive, clear communication around potentially distressing topics such as prognosis and goals of care for seriously ill pediatric patients is optimizing the setting where this communication will take place and developing informed consensus among the child's caregiving team regarding goals and options for care. Often, these conversations occur within the context of family meetings, which are formal meetings between families and the child's multidisciplinary medical team. Prior to the family meeting, providers often meet to discuss the child's overall case, reasonably expected prognosis, and options for care, in addition to clarifying specific roles each provider will take on during the family meeting. During this meeting, the multidisciplinary medical team may also discuss any legal or ethical considerations related to the case. Palliative care providers often facilitate this meeting and help synthesize its outcome for children and their families. Experts in optimized communication, palliative care providers may opt to hold the family meeting in a quiet space where the providers and family can sit and address concerns during a time when all parties are not constrained. Additionally, parents' preferences regarding information exchange with the sick child present should be clarified. If the child's guardians are resistant to disclosing information in front of their child, the child's provider may explore parental concerns on the topic. When excluded from family meetings and moments of challenging information exchange, adolescents, in particular, may have challenges with trusting their medical providers if they feel critical information is being withheld. It is important to follow the child's lead when deciding whether to disclose difficult information. Additionally, including them in these conversations can help the child fully participate in their care and medical decision making. Finally, it is important to prioritize the family's agenda while additionally considering any urgent medical decisions needed to advance the child's care.
- Supporting emotional distress. A significant role of the pediatric palliative care provider is to help support children, their families, and their caregiving teams through the emotional stress of illness. Communication strategies the palliative care provider may employ in this role are asking for permission when engaging with potentially distressing conversations, naming emotions witnessed to create opportunities to discuss complex emotional responses to illness, actively listening, and allowing for invitational silence. The palliative care provider may iteratively assess the child and family's emotional responses and needs during challenging conversations. At times, the medical team may be hesitant to discuss a child's prognosis out of fear of increasing distress. This sentiment is not supported by the literature; among adults, end of life discussions are not associated with increased rates of anxiety or depression. Though this topic is not well studied in pediatric populations, conversations about prognosis have the potential to increase in parental hope and peace of mind.
Palliative care began in the hospice movement and is now delivered 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 concept that originated and gained momentum in the United Kingdom after Dame Cicely Saunders founded St. Christopher's Hospice in 1967. She first went to St. Thomas’ Hospital in 1944 to become a nurse but instead became an almoner, after which she encountered the terminally ill and observed their unmet care needs. She then trained as a physician, completing her studies in 1957, and spent the next decade working towards opening St. Christopher's Hospice.
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.
Patients may prefer to be at home when dying or receiving care. Unfortunately, for a large number of patients this does not happen. A systematic review showed that home palliative care allows more people to die at home.
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.
Costs and funding
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
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."
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.
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- Family Caregiver's Guide to Hospice and Palliative Care
- Palliative Care Nursing at Curlie
- NCPC The UK National Council for Palliative Care
- All Ireland Institute of Hospice and Palliative Care
- Scottish Partnership for Palliative Care
- The Palliative Hub
- The Palliative Hub – Adult
- The Palliative Hub – Learning Platform
- The Palliative Hub – Children and Young People
- Improving Access to Palliative Care
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