Palliative care (derived from the Latin root , or 'to cloak') is an interdisciplinary medical caregiving approach aimed at optimizing
quality of life
Quality of life (QOL) is defined by the World Health Organization as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards ...
and mitigating suffering among people with serious, complex, and often
terminal
Terminal may refer to:
Computing Hardware
* Terminal (electronics), a device for joining electrical circuits together
* Terminal (telecommunication), a device communicating over a line
* Computer terminal, a set of primary input and output dev ...
illnesses.
Within the published literature, many definitions of palliative care exist. The
World Health Organization
The World Health Organization (WHO) is a specialized agency of the United Nations responsible for international public health. The WHO Constitution states its main objective as "the attainment by all peoples of the highest possible level of h ...
(WHO) 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." In the past, palliative care was a disease specific approach, but today the WHO takes a more broad approach, that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness.
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
Curative care or curative medicine is the health care given for medical conditions where a cure is considered achievable, or even possibly so, and directed to this end. Curative care differs from preventive care, which aims at preventing the appe ...
. It is provided by an interdisciplinary team which can include physicians, nurses, occupational and physical therapists, 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
End-of-life care (EoLC) refers to health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotio ...
, palliative care is not limited to individuals near the end of life.
Evidence supports the efficacy of a palliative care approach in improvement of a person's quality of life.
Palliative care's main focus is to improve the quality of life for those with chronic illnesses. It is commonly the case that palliative care is provided at the end of life, but it can be helpful for a person of any stage of illness that is critical or any age.
Scope
The overall goal of palliative care is to improve quality of life of individuals with serious illness, any life-threatening condition which either reduces an individual's daily function
or quality of life or increases caregiver burden, through pain and symptom management, identification and support of caregiver needs, and care coordination. Palliative care can be delivered at any stage of illness alongside other treatments with curative or life-prolonging intent and is not restricted to people receiving
end-of-life care
End-of-life care (EoLC) refers to health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotio ...
.
Historically, palliative care services were focused on individuals with incurable
cancer
Cancer is a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. These contrast with benign tumors, which do not spread. Possible signs and symptoms include a lump, abnormal b ...
, but this framework is now applied to other diseases, like severe
heart failure
Heart failure (HF), also known as congestive heart failure (CHF), is a syndrome, a group of signs and symptoms caused by an impairment of the heart's blood pumping function. Symptoms typically include shortness of breath, excessive fatigue, a ...
,
chronic obstructive pulmonary disease
Chronic obstructive pulmonary disease (COPD) is a type of progressive lung disease characterized by long-term respiratory symptoms and airflow limitation. The main symptoms include shortness of breath and a cough, which may or may not produce ...
, and
multiple sclerosis
Multiple (cerebral) sclerosis (MS), also known as encephalomyelitis disseminata or disseminated sclerosis, is the most common demyelinating disease, in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This d ...
and other
neurodegenerative
A neurodegenerative disease is caused by the progressive loss of structure or function of neurons, in the process known as neurodegeneration. Such neuronal damage may ultimately involve cell death. Neurodegenerative diseases include amyotrophic ...
conditions.
Palliative care can be initiated in a variety of care settings, including emergency rooms, hospitals, hospice facilities, or at home. For some severe disease processes,
medical specialty
A medical specialty is a branch of medical practice that is focused on a defined group of patients, diseases, skills, or philosophy. Examples include those branches of medicine that deal exclusively with children (paediatrics), cancer (oncology), ...
professional organizations
A professional association (also called a professional body, professional organization, or professional society) usually seeks to further a particular profession, the interests of individuals and organisations engaged in that profession, and th ...
recommend initiating palliative care at the time of diagnosis or when disease-directed options would not improve a patient's
prognosis
Prognosis (Greek: πρόγνωσις "fore-knowing, foreseeing") is a medical term for predicting the likely or expected development of a disease, including whether the signs and symptoms will improve or worsen (and how quickly) or remain stabl ...
. For example, the
American Society of Clinical Oncology recommends that patients with advanced cancer should be "referred to interdisciplinary palliative care teams that provide inpatient and outpatient care early in the course of disease, alongside active treatment of their cancer" within eight weeks of diagnosis.
Appropriately engaging palliative care providers as a part of patient care improves overall symptom control, quality of life, and family satisfaction of care while reducing overall healthcare costs.
Palliative care vis-à-vis hospice care
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. Hospice care focuses on comfort and psychological support and curative therapies are not pursued. 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
Medicaid in the United States is a federal and state program that helps with healthcare costs for some people with limited income and resources. Medicaid also offers benefits not normally covered by Medicare, including nursing home care and pers ...
, and most
health maintenance organizations
In the United States, a health maintenance organization (HMO) is a medical insurance group that provides health services for a fixed annual fee. It is an organization that provides or arranges managed care for health insurance, self-funded healt ...
and
private insurers). An individual's hospice benefits are not revoked if that individual lives beyond a six-month period.
Outside the United States, the term
hospice
Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by ...
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.
Over 40% of all dying patients in America currently undergo hospice care. Most of the hospice care occurs at a home environment during the last weeks/months of their lives. Of those patients, 86.6% believe their care is "excellent". Hospice's philosophy is that death is a part of life, so it is personal and unique. Caregivers are encouraged to discuss death with the patients and encourage spiritual exploration (if they so wish).
History
The field of palliative care grew out of the hospice movement, which is commonly associated with Dame
Cicely Saunders
Dame Cicely Mary Strode Saunders (22 June 1918 – 14 July 2005) was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasising the i ...
, who founded
St. Christopher's Hospice for the terminally ill in 1967,
and
Elisabeth Kübler-Ross
Elisabeth Kübler-Ross (July 8, 1926 – August 24, 2004) was a Swiss-American psychiatrist, a pioneer in near-death studies, and author of the internationally best-selling book, '' On Death and Dying'' (1969), where she first discussed her the ...
who published her seminal work "
On Death and Dying
On, on, or ON may refer to:
Arts and entertainment Music
* On (band), a solo project of Ken Andrews
* ''On'' (EP), a 1993 EP by Aphex Twin
* ''On'' (Echobelly album), 1995
* ''On'' (Gary Glitter album), 2001
* ''On'' (Imperial Teen album), 200 ...
" in 1969. In 1974,
Balfour Mount
Balfour M. Mount, (born 14 April 1939) is a Canadian physician, surgeon, and academic. He is considered the father of palliative care in North America.
Born in Ottawa, Ontario, he received his medical degree from Queen's University in 1963 and ...
coined the term "palliative care".
and
Paul Henteleff Dr. Paul D. Henteleff (born 1931) led the world's first hospital-based terminal care unit.
Career
Raised in Stonewall, Manitoba, Canada, by his parents nurse Lillian Axelrode and businessman Harry Henteleff, Dr. Paul Henteleff earned his medical ...
became the director of a new "terminal care" unit at
Saint Boniface Hospital
Saint Boniface Hospital (french: Hôpital Saint-Boniface; also called St. B; previously called the Saint-Boniface General Hospital) is Manitoba's second-largest hospital, located in the Saint Boniface neighbourhood of Winnipeg. Founded by the ...
in Winnipeg. In 1987, Declan Walsh established a palliative medicine service at the
Cleveland Clinic
Cleveland Clinic is a nonprofit American academic medical center based in Cleveland, Ohio. Owned and operated by the Cleveland Clinic Foundation, an Ohio nonprofit corporation established in 1921, it runs a 170-acre (69 ha) campus in Cleveland, ...
Cancer Center in Ohio which later expanded to become the training site of the first palliative care clinical and research fellowship as well as the first acute pain and palliative care inpatient unit in the United States. The program evolved into The Harry R. Horvitz Center for Palliative Medicine which was designated as an international demonstration project by the
World Health Organization
The World Health Organization (WHO) is a specialized agency of the United Nations responsible for international public health. The WHO Constitution states its main objective as "the attainment by all peoples of the highest possible level of h ...
and accredited by the
European Society for Medical Oncology
The European Society for Medical Oncology (ESMO) is the leading professional organisation for medical oncology. With more than 25,000 members representing oncology professionals from over 160 countries worldwide, ESMO was founded in 1975.
''Anna ...
as an Integrated Center of Oncology and Palliative Care.
Advances in palliative care have since inspired a dramatic increase in hospital-based palliative care programs. Notable research outcomes forwarding the implementation of palliative care programs include:
* Evidence that hospital palliative care consult teams are associated with significant hospital and overall health system cost savings.
* Evidence that palliative care services increase the likelihood of dying at home and reduce symptom burden without impacting on caregiver grief among the vast majority of Americans who prefer to die at home.
* Evidence that providing palliative care in tandem with standard oncologic care among patients with advanced cancer is associated with lower rates of depression, increased quality of life, and increased length of survival compared to those receiving standard oncologic care.
Over 90% of US hospitals with more than 300 beds have palliative care teams, yet only 17% of rural hospitals with 50 or more beds have palliative care teams.
Hospice and palliative medicine
In 2006, ''hospice and palliative medicine'' was officially recognized by the American Board of Medical Specialties, and is ''co-sponsored'' by the American Boards of
* Internal Medicine
* Anesthesiology
* Family Medicine
* Physical Medicine ...
has been a board certified sub-specialty of medicine in the United States since 2006. Additionally, in 2011, The
Joint Commission
The Joint Commission is a United States-based nonprofit tax-exempt 501(c) organization that accredits more than 22,000 US health care organizations and programs. The international branch accredits medical services from around the world. A majori ...
began an Advanced Certification Program for Palliative Care that recognizes hospital inpatient programs demonstrating outstanding care and enhancement of the quality of life for people with serious illness.
Practice
Symptom assessment
One instrument used in palliative care is the ''Edmonton Symptom Assessment Scale'' (ESAS), which consists of eight
visual analog scale
The visual analogue scale (VAS) is a psychometrics, psychometric response scale that can be used in questionnaires. It is a measurement instrument for subjective characteristics or attitudes that cannot be directly measured. When responding to a VA ...
s (VAS) ranging from 0–10, indicating the levels of
pain
Pain is a distressing feeling often caused by intense or damaging stimuli. The International Association for the Study of Pain defines pain as "an unpleasant sensory and emotional experience associated with, or resembling that associated with, ...
, activity,
nausea
Nausea is a diffuse sensation of unease and discomfort, sometimes perceived as an urge to vomit. While not painful, it can be a debilitating symptom if prolonged and has been described as placing discomfort on the chest, abdomen, or back of the ...
,
depression,
anxiety
Anxiety is an emotion which is characterized by an unpleasant state of inner turmoil and includes feelings of dread over anticipated events. Anxiety is different than fear in that the former is defined as the anticipation of a future threat wh ...
,
drowsiness
Somnolence (alternatively sleepiness or drowsiness) is a state of strong desire for sleep, or sleeping for unusually long periods (compare hypersomnia). It has distinct meanings and causes. It can refer to the usual state preceding falling asleep ...
,
appetite
Appetite is the desire to eat food items, usually due to hunger. Appealing foods can stimulate appetite even when hunger is absent, although appetite can be greatly reduced by satiety. Appetite exists in all higher life-forms, and serves to regu ...
, sensation of
well-being
Well-being, or wellbeing, also known as wellness, prudential value or quality of life, refers to what is intrinsically valuable relative ''to'' someone. So the well-being of a person is what is ultimately good ''for'' this person, what is in th ...
,
and sometimes
shortness of breath
Shortness of breath (SOB), also medically known as dyspnea (in AmE) or dyspnoea (in BrE), is an uncomfortable feeling of not being able to breathe well enough. The American Thoracic Society defines it as "a subjective experience of breathing disc ...
.
[Edmonton Symptom Assessment System (ESAS)]
from Cancer Care Ontario. Revised 2005 February 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.]
Interventions
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 members' 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.
High-certainty evidence supports the finding that implementation of home-based end-of-life care programs may increase the number of adults who will die at home and slightly improve patient satisfaction at a one-month follow-up. The impact of home-based end-of-life care on caregivers, healthcare staff, and health service costs are uncertain.
Pain, distress, and anxiety
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
Social work is an academic discipline and practice-based profession concerned with meeting the basic needs of individuals, families, groups, communities, and society as a whole to enhance their individual and collective well-being. Social work ...
, counselor
Counselor or counsellor may refer to:
A professional In diplomacy and government
* Counsellor of State, senior member of the British royal family to whom the Monarch can delegate some functions in case of unavailability
* Counselor (di ...
, as well as spiritual support such as a chaplain
A chaplain is, traditionally, a cleric (such as a Minister (Christianity), minister, priest, pastor, rabbi, purohit, or imam), or a laity, lay representative of a religious tradition, attached to a secularity, secular institution (such as a hosp ...
, 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
A relaxation technique (also known as relaxation training) is any method, process, procedure, or activity that helps a person to relax; to attain a state of increased calmness; or otherwise reduce levels of pain, anxiety, stress or anger. Relax ...
to address their needs. Palliative pets can play a role in this last category.
Total pain
In the 1960s, hospice pioneer Cicely Saunders
Dame Cicely Mary Strode Saunders (22 June 1918 – 14 July 2005) was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research and her role in the birth of the hospice movement, emphasising the i ...
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
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
Xerostomia, also known as dry mouth, is dryness in the mouth, which may be associated with a change in the composition of saliva, or reduced salivary flow, or have no identifiable cause.
This symptom is very common and is often seen as a side ef ...
(dry mouth), nausea and vomiting, constipation, fever, delirium
Delirium (also known as acute confusional state) is an organically caused decline from a previous baseline of mental function that develops over a short period of time, typically hours to days. Delirium is a syndrome encompassing disturbances in ...
, and excessive oral and pharyngeal secretions ("Death Rattle
Terminal respiratory secretions (or simply terminal secretions),, known colloquially as a death rattle, are sounds often produced by someone who is near death as a result of fluids such as saliva and bronchial secretions accumulating in the throa ...
").
Radiation is commonly used with palliative intent to alleviate pain in patients with cancer. As an effect from radiation may take days to weeks to occur, patients dying a short time following their treatment are unlikely to receive benefit.
Psychosocial pain and anxiety
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. For adults with anxiety, medical evidence in the form of high-quality randomized trials is insufficient to determine the most effective treatment approach to reduce the symptoms of anxiety.
Spirituality
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", especially for patients who are living with incurable and advanced illnesses of a chronic nature. Spiritual beliefs and practices can influence perceptions of pain and distress, as well as quality of life among advanced cancer patients. Spiritual needs are often described in literature as including loving/being loved, forgiveness, and deciphering the meaning of life.
Most spiritual interventions are subjective and complex. Many have not been well evaluated for their effectiveness, however tools can be used to measure and implement effective spiritual care.
Nausea and vomiting
Nausea and vomiting are common in people who have advanced terminal illness and can cause distress. Several antiemetic
An antiemetic is a drug that is effective against vomiting and nausea. Antiemetics are typically used to treat motion sickness and the side effects of opioid analgesics, general anaesthetics, and chemotherapy directed against cancer. They may ...
pharmacologic options are suggested to help alleviate these symptoms. For people who do not respond to first-line medications, levomepromazine
Levomepromazine, also known as methotrimeprazine, is a phenothiazine neuroleptic drug. Brand names include Nozinan, Levoprome, Detenler, Hirnamin, Levotomin and Neurocil. It is a low-potency antipsychotic (approximately half as potent as chlorpr ...
may be used, however there have been insufficient clinical trials to assess the effectiveness of this medication. Haloperidol
Haloperidol, sold under the brand name Haldol among others, is a typical antipsychotic medication. Haloperidol is used in the treatment of schizophrenia, tics in Tourette syndrome, mania in bipolar disorder, delirium, agitation, acute psychosi ...
and droperidol
Droperidol (Inapsine, Droleptan, Dridol, Xomolix, Innovar ombination with fentanyl">fentanyl.html" ;"title="ombination with fentanyl">ombination with fentanyl is an antidopaminergic medication, drug used as an antiemetic (that is, to prevent o ...
are other medications that are sometimes prescribed to help alleviate nausea and vomiting, however further research is also required to understand how effective these medications may be.
Hydration and nutrition
Many terminally ill people cannot consume adequate food or drink. Providing medically assisted food or drink to prolong their life and improve the quality of their life is common, however there have been few high quality studies to determine best practices and the effectiveness of these approaches.
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
The ambulatory ( la, ambulatorium, ‘walking place’) is the covered passage around a cloister or the processional way around the east end of a cathedral or large church and behind the high altar. The first ambulatory was in France in the 11th ...
resources available to patients and families; and psychologically supporting children and families through illness and bereavement
Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, grief also has physical, cogniti ...
.
Symptoms assessment and management of children
As with palliative care for adults, symptom 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 prolongs life in some cases. 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
The medical history, case history, or anamnesis (from Greek: ἀνά, ''aná'', "open", and μνήσις, ''mnesis'', "memory") of a patient is information gained by a physician by asking specific questions, either to the patient or to other peo ...
. 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
An examination (exam or evaluation) or test is an educational assessment intended to measure a test-taker's knowledge, skill, aptitude, physical fitness, or classification in many other topics (e.g., beliefs). A test may be administered verba ...
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
Morphine is a strong opiate that is found naturally in opium, a dark brown resin in poppies (''Papaver somniferum''). It is mainly used as a analgesic, pain medication, and is also commonly used recreational drug, recreationally, or to make ...
. 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
Tertiary ( ) is a widely used but obsolete term for the geologic period from 66 million to 2.6 million years ago.
The period began with the demise of the non-avian dinosaurs in the Cretaceous–Paleogene extinction event, at the start ...
versus local hospital, intensive care unit
220px, Intensive care unit
An intensive care unit (ICU), also known as an intensive therapy unit or intensive treatment unit (ITU) or critical care unit (CCU), is a special department of a hospital or health care facility that provides intensiv ...
, home, hospice
Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by ...
, 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
Massage is the manipulation of the body's soft tissues. Massage techniques are commonly applied with hands, fingers, elbows, knees, forearms, feet or a device. The purpose of massage is generally for the treatment of body stress or pain. In Eu ...
, play therapy
Play therapy refers to a range of methods of capitalising on children's natural urge to explore and harnessing it to meet and respond to the developmental and later also their mental health needs. It is also used for Anatomically correct doll, f ...
, distraction therapy, hypnotherapy
Hypnotherapy is a type of mind–body intervention in which hypnosis is used to create a state of focused attention and increased suggestibility in the treatment of a medical or psychological disorder or concern. Popularized by 17th and 18th cen ...
, physical therapy
Physical therapy (PT), also known as physiotherapy, is one of the allied health professions. It is provided by physical therapists who promote, maintain, or restore health through physical examination, diagnosis, management, prognosis, patient ...
, occupational therapy
Occupational therapy (OT) is a global healthcare profession. It involves the use of assessment and intervention to develop, recover, or maintain the meaningful activities, or ''occupations'', of individuals, groups, or communities. The field of ...
, and complementary therapies
Alternative medicine is any practice that aims to achieve the healing effects of medicine despite lacking biological plausibility, testability, repeatability, or evidence from clinical trials. Complementary medicine (CM), complementary and alt ...
) when addressing distressing symptoms. Respite care
__NOTOC__
Respite care is planned or emergency temporary care provided to caregivers of a child or adult.
Respite programs provide planned short-term and time-limited breaks for families and other unpaid caregivers of children with a developmenta ...
is an additional practice that can further aid alleviating the physical and mental pain from the child and its family. By allowing the caregiving to ensue by other qualified individuals, it allows the family time to rest and renew themselves
* 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
An epileptic seizure, informally known as a seizure, is a period of symptoms due to abnormally excessive or neural oscillation, synchronous neuronal activity in the brain. Outward effects vary from uncontrolled shaking movements involving much o ...
, 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 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. In the case of critically ill babies, parents are able to participate more in decision making if they are presented with options to be discussed rather than recommendations by the doctor. Utilizing this style of communication also leads to less conflict with doctors and might help the parents cope better with the eventual outcomes.
* 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.
* SPIKE framework. This is a framework that is designed to assist healthcare workers deliver bad news. The acronym stands for: setting, perception, invitation, knowledge, empathy, and summarize/strategy. When giving bad news it is important to consider the setting, which considers the environment in which the healthcare provider is delivering the news including privacy, sitting, time, and the inclusion of family members. What to say should also be considered, as well as rehearsed. It is important to understand how a patient is receiving the information by asking open ended questions and asking them to repeat what they learned in their own words, which is perception aspect of the framework. The healthcare provider should seek an invitation from the patient to disclose additional information before doing so in order to prevent overwhelming or distressing the patient further. In order to ensure the patient understands what is being told, knowledge must be used. This includes speaking in a way that the patient will understand, using simple words, not being excessively blunt, giving information in small chunks and checking in with the patient to confirm that they understand, and not providing poor information that may not be completely true. In order to alleviate some of a patient's distress it is crucial to be empathetic in the sense of understanding how a patient is feeling and the reactions they are having. This can allow one to change how they are delivering information, allow the patient to have time to process the information, or console them if needed. Connecting with patients is an important step in delivering bad news; maintaining eye contact proves that the healthcare provider is present and the patient and family has their full attention. Furthermore, the provider may make a connection by touching the patients shoulder or hand, giving them a physical connection to know that they are not alone. Finally, it is important to summarize all the information given in order to ensure the patient fully understands and takes away the major points. Additionally, patients who have a clear plan for the future are less likely to feel anxious and uncertain, but it is important to ask people if they are ready for that information before providing them with it.
Society
Costs and funding
Funding for hospice and palliative care services varies. In Great Britain
Great Britain is an island in the North Atlantic Ocean off the northwest coast of continental Europe. With an area of , it is the largest of the British Isles, the largest European island and the ninth-largest island in the world. It is ...
and many other countries all palliative care is offered free, either through the National Health Service
The National Health Service (NHS) is the umbrella term for the publicly funded healthcare systems of the United Kingdom (UK). Since 1948, they have been funded out of general taxation. There are three systems which are referred to using the " ...
or through charities working in partnership with the local health services. Palliative care services in the United States are paid by philanthropy, fee-for-service mechanisms, or from direct hospital support while hospice care is provided as a 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 care plan and may not bill the person for services. The hospice agency, together with the person's primary physician, is responsible for determining the care plan. 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-enroll in hospice.
Certification and training for services
In most countries, hospice care and palliative care is provided by an interdisciplinary team consisting of physician
A physician (American English), medical practitioner (Commonwealth English), medical doctor, or simply doctor, is a health professional who practices medicine, which is concerned with promoting, maintaining or restoring health through th ...
s, pharmacists
A pharmacist, also known as a chemist (Commonwealth English) or a druggist (North American and, archaically, Commonwealth English), is a healthcare professional who prepares, controls and distributes medicines and provides advice and instructi ...
, nurses
Nursing is a profession within the health care sector focused on the care of individuals, families, and communities so they may attain, maintain, or recover optimal health and quality of life. Nurses may be differentiated from other health c ...
, nursing assistants
Unlicensed assistive personnel (UAP) are paraprofessionals who assist individuals with physical disabilities, mental impairments, and other health care needs with their activities of daily living (ADLs). UAPs also provide bedside care—inclu ...
, social worker
Social work is an academic discipline and practice-based profession concerned with meeting the basic needs of individuals, families, groups, communities, and society as a whole to enhance their individual and collective well-being. Social work ...
s, chaplain
A chaplain is, traditionally, a cleric (such as a Minister (Christianity), minister, priest, pastor, rabbi, purohit, or imam), or a laity, lay representative of a religious tradition, attached to a secularity, secular institution (such as a hosp ...
s, and caregivers. 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 sub-specialty of hospice and palliative medicine
In 2006, ''hospice and palliative medicine'' was officially recognized by the American Board of Medical Specialties, and is ''co-sponsored'' by the American Boards of
* Internal Medicine
* Anesthesiology
* Family Medicine
* Physical Medicine ...
was established in 2006 to provide expertise in the care of people with life-limiting, advanced disease, and catastrophic injury
Catastrophe or catastrophic comes from the Greek κατά (''kata'') = down; στροφή (''strophē'') = turning ( el, καταστροφή). It may refer to:
A general or specific event
* Disaster, a devastating event
* The Asia Minor Catastro ...
; 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
Volunteering is a voluntary act of an individual or group freely giving time and labor for community service. Many volunteers are specifically trained in the areas they work, such as medicine, education, or emergency rescue. Others serve ...
, 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
A nursing home is a facility for the residential care of elderly or disabled people. Nursing homes may also be referred to as skilled nursing facility (SNF) or long-term care facilities. Often, these terms have slightly different meanings to in ...
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
The American Academy of Hospice and Palliative Medicine (AAHPM) is a professional organization for physicians specializing in Hospice and Palliative Medicine, headquartered in Chicago, Illinois. Membership is open to all health care providers com ...
; recently this was changed to be done through any of 11 different speciality boards through an American Board of Medical Specialties
Established in 1933, the American Board of Medical Specialties (ABMS) is a non-profit organization which represent 24 broad areas of specialty medicine. ABMS is the largest physician-led specialty certification organization in the United States ...
-approved procedure. Additionally, board certification is available to osteopathic physicians
Doctor of Osteopathic Medicine (DO or D.O., or in Australia DO USA) is a medical degree conferred by the 38 osteopathic medical schools in the United States. DO and Doctor of Medicine (MD) degrees are equivalent: a DO graduate may become licen ...
(D.O.
Doctor of Osteopathic Medicine (DO or D.O., or in Australia DO USA) is a medical degree conferred by the 38 osteopathic medical schools in the United States. DO and Doctor of Medicine (MD) degrees are equivalent: a DO graduate may become licens ...
) in the United States through four medical specialty boards through an -approved procedure. More than 50 fellowship programs provide one to two years of specialty training following a primary residency. In the United Kingdom
The United Kingdom of Great Britain and Northern Ireland, commonly known as the United Kingdom (UK) or Britain, is a country in Europe, off the north-western coast of the continental mainland. It comprises England, Scotland, Wales and North ...
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
The Royal College of Physicians (RCP) is a British professional membership body dedicated to improving the practice of medicine, chiefly through the accreditation of physicians by examination. Founded by royal charter from King Henry VIII in 1 ...
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 The End-of-Life Nursing Education Consortium (ELNEC) project is a national education initiative whose mission is to improve palliative care. The project provides an undergraduate and graduate nursing faculty, CE providers, staff development educator ...
(ELNEC).
The Tata Memorial Centre in Mumbai has offered a physician's course in palliative medicine since 2012, the first one of its kind in the country.
Regional variation in services
In the United States, hospice and palliative care represent two different aspects of care with similar philosophies, 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
The National Health Service (NHS) is the umbrella term for the publicly funded healthcare systems of the United Kingdom (UK). Since 1948, they have been funded out of general taxation. There are three systems which are referred to using the " ...
'', a strong hospice movement, and deep community engagement on the issue."
In 2021 the UK's National Palliative and End of Life Care Partnership published their six ambitions for 2021–26. These include fair access to end of life care for everyone regardless of who they are, where they live or their circumstances, and the need to maximise comfort and wellbeing. Informed and timely conversations are also highlighted.
Acceptance and access
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,[Center to Advance Palliative Care, www.capc.org] 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 characterized their work as being "euthanasia
Euthanasia (from el, εὐθανασία 'good death': εὖ, ''eu'' 'well, good' + θάνατος, ''thanatos'' 'death') is the practice of intentionally ending life to eliminate pain and suffering.
Different countries have different eut ...
, 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.
Despite significant progress that has been made to increase the access to palliative care within the United States and other countries as well, many countries have not yet considered palliative care as a public health problem, and therefore do not include it in their public health agenda. Resources and cultural attitudes both play significant roles in the acceptance and implementation of palliative care in the health care agenda. A study identified the current gaps in palliative care for people with severe mental illness
A mental disorder, also referred to as a mental illness or psychiatric disorder, is a behavioral or mental pattern that causes significant distress or impairment of personal functioning. Such features may be persistent, relapsing and remitti ...
(SMI's). They found that due to the lack of resources within both mental health and end of life services people with SMI's faced a number of barriers to accessing timely and appropriate palliative care. They called for a multidisciplinary team approach, including advocacy
Advocacy is an Action (philosophy), activity by an individual or advocacy group, group that aims to influence decision making, decisions within political, economic, and social institutions. Advocacy includes activities and publications to infl ...
, with a point of contact co-ordinating the appropriate support for the individual. They also state that end of life and mental health care
A mental health professional is a health care practitioner or social and human services provider who offers services for the purpose of improving an individual's mental health or to treat mental disorders. This broad category was developed as a ...
needs to be included in the training for professionals.
A review states that by restricting referrals to palliative care only when patients have a definitive time line for death, something that the study found to often be inaccurate, can have negative implications for the patient both when accessing end of life care
End-of-life care (EoLC) refers to health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotio ...
, or being unable to access services due to not receiving a time line from medical professionals. The authors call for a less rigid approach to referrals to palliative care services in order to better support the individual, improve quality of life remaining and provide more holistic care.
Many people with chronic pain are stigmatized and treated as opioid addicts. Patients can build a tolerance to drugs and have to take more and more to manage their pain. The symptoms of chronic pain patients do not show up on scans, so the doctor must go off trust alone. This is the reason that some wait to consult their doctor and endure sometimes years of pain before seeking help.
Popular media
Palliative care was the subject of the 2018 Netflix short documentary, '' End Game'' by directors Rob Epstein
Robert P. Epstein (born April 6, 1955), is an American director, producer, writer, and editor. He has won two Academy Awards for Best Documentary Feature, for the films '' The Times of Harvey Milk'' and '' Common Threads: Stories from the Quil ...
and Jeffrey Friedman about terminally ill patients in a San Francisco hospital and features the work of palliative care physician, BJ Miller. The film's executive producers were Steven Ungerleider, David C. Ulich and Shoshana R. Ungerleider.
In 2016, an open letter to the singer David Bowie
David Robert Jones (8 January 194710 January 2016), known professionally as David Bowie ( ), was an English singer-songwriter and actor. A leading figure in the music industry, he is regarded as one of the most influential musicians of the ...
written by a palliative care doctor, Professor Mark Taubert, talked about the importance of good palliative care, being able to express wishes about the last months of life, and good tuition and education about end of life care generally. The letter went viral after David Bowie's son Duncan Jones
Duncan Zowie Haywood Jones (born 30 May 1971) is a British film director, film producer and screenwriter. He is best known for directing the films ''Moon'' (2009), ''Source Code'' (2011), ''Warcraft'' (2016), and ''Mute'' (2018). For ''Moon'', ...
shared it. The letter was subsequently read out by the actor Benedict Cumberbatch
Benedict Timothy Carlton Cumberbatch (born 19 July 1976) is an English actor. Known for his work on screen and stage, he has received various accolades, including a British Academy Television Award, a Primetime Emmy Award and a Laurence O ...
and the singer Jarvis Cocker
Jarvis Branson Cocker (born 19 September 1963) is an English musician and radio presenter. As the founder, frontman, lyricist and only consistent member of the band Pulp, he became a figurehead of the Britpop genre of the mid-1990s. Following P ...
at public events.
Research
Research funded by the UK's National Institute for Health and Care Research
The National Institute for Health and Care Research (NIHR) is the British government’s major funder of clinical, public health, social care and translational research. With a budget of over £1.2 billion in 2020–21, its mission is to "impr ...
(NIHR) has addressed these areas of need. Examples highlight inequalities faced by several groups and offers recommendations. These include the need for close partnership between services caring for people with severe mental illness, improved understanding of barriers faced by Gypsy, Traveller and Roma communities, the provision of flexible palliative care services for children from ethnic minorities
The term 'minority group' has different usages depending on the context. According to its common usage, a minority group can simply be understood in terms of demographic sizes within a population: i.e. a group in society with the least number o ...
or deprived areas.[; ]
Other research suggests that giving nurses and pharmacists easier access to electronic patient records about prescribing could help people manage their symptoms at home. A named professional to support and guide patients and carers through the healthcare system could also improve the experience of care at home at the end of life. A synthesised review looking at palliative care in the UK created a resource showing which services were available and grouped them according to their intended purpose and benefit to the patient. They also stated that currently in the UK palliative services are only available to patients with a timeline to death, usually 12 months or less. They found these timelines to often be inaccurate and created barriers to patients accessing appropriate services. They call for a more holistic approach to end of life care which is not restricted by arbitrary timelines.
See also
* Children's hospice
A children's hospice is a hospice specifically designed to help children and young people who are not expected to reach adulthood with the emotional and physical challenges they face, and also to provide respite care for their families.
Services ...
* Elderly care
Elderly care, or simply eldercare (also known in parts of the English-speaking world as aged care), serves the needs and requirements of senior citizens. It encompasses assisted living, adult daycare, long-term care, nursing homes (often called re ...
* End-of-life care
End-of-life care (EoLC) refers to health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotio ...
* Hospice
Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by ...
* Hospice and palliative medicine
In 2006, ''hospice and palliative medicine'' was officially recognized by the American Board of Medical Specialties, and is ''co-sponsored'' by the American Boards of
* Internal Medicine
* Anesthesiology
* Family Medicine
* Physical Medicine ...
* Liverpool Care Pathway for the Dying Patient
The Liverpool Care Pathway for the Dying Patient (LCP) was a care pathway in the United Kingdom (excluding Wales) covering palliative care options for patients in the final days or hours of life. It was developed to help doctors and nurses pro ...
* Medical ethics
Medical ethics is an applied branch of ethics which analyzes the practice of clinical medicine and related scientific research. Medical ethics is based on a set of values that professionals can refer to in the case of any confusion or conflict. T ...
* Palliative sedation In medicine, specifically in end-of-life care, palliative sedation (also known as terminal sedation, continuous deep sedation, or sedation for intractable distress of a dying patient) is the palliative practice of relieving distress in a terminally ...
* Psychedelic therapy
Psychedelic therapy (or psychedelic-assisted therapy) refers to the proposed use of psychedelic drugs, such as psilocybin, MDMA, LSD, and ayahuasca, to treat mental disorders. As of 2021, psychedelic drugs are controlled substances in most countrie ...
* Psycho-oncology
Psycho-oncology is an interdisciplinary field at the intersection of physical, psychological, social, and behavioral aspects of the cancer experience for both patients and caregivers. Also known as psychiatric oncology or psychosocial oncology, r ...
* Symptomatic treatment
Symptomatic treatment, supportive care, supportive therapy, or palliative treatment is any medical therapy of a disease that only affects its symptoms, not the underlying cause. It is usually aimed at reducing the signs and symptoms for the comfor ...
* Worldwide Hospice Palliative Care Alliance
The Worldwide Hospice Palliative Care Alliance or WHPCA (formerly known as the Worldwide Palliative Care Alliance or WPCA) is an international non-governmental organization based in the United Kingdom. In official relations with the World Health ...
References
External links
Family Caregiver's Guide to Hospice and Palliative Care
*
All Ireland Institute of Hospice and Palliative Care
Scottish Partnership for Palliative Care
The Palliative Hub
Improving Access to Palliative Care
Coroners Court of Queensland. Findings of investigation. Palliative care
{{Authority control
Hospice