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, 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.
Evidence supports the efficacy of a palliative care approach in improvement of a patient's quality of life.
As being referred for palliative care can cause distress and anxiety, clinicians may use a number of strategies such as SPIKES for delivering the bad news.
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 of life-prolonging intent and is not restricted to people receiving end-of-life care. Historically, palliative care services were focus on individuals with incurable cancer, but this framework is now applied to other diseases, like severe heart failure,chronic obstructive pulmonary disease, and multiple sclerosis and other neurodegenerative 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 specialtyprofessional organizations recommend initiating palliative care at the time of diagnosis or disease-directed options would not improve a patient's trajectory. 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.
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, and most health maintenance organizations and private insurers). 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.
History of palliative care in the United States
The field of palliative care grew out of the hospice movement, which is commonly associated with Dame Cicely Saunders, who founded St. Christopher's Hospice for the terminally ill in 1967, and Elisabeth Kübler-Ross who published her seminal work "On Death and Dying" in 1969. In 1973, Balfour Mount, a urologist familiar with Drs. Saunders and Kübler-Ross's work, coined the term "palliative care" and created the first palliative care ward at the Royal-Victoria Hospital in Montreal. In 1987, Declan Walsh established a palliative medicine service at the Cleveland Clinic 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 and accredited by the European Society for Medical Oncology 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 reduces 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 advance 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 United States-based hospitals with more than 300 beds now have palliative care teams, yet only 17% of rural hospitals with 50 or more beds have palliative care teams. Palliative medicine has been a board certified sub-specialty of medicine in the United States since 2006. Additionally, in 2011, The Joint Commission 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.
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.
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, 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. 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.
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.
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.
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 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 physicians, pharmacists, nurses, nursing assistants, social workers, chaplains, 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 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 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 characterized their work as being "euthanasia, murder or killing" during the last five years. A quarter of them had received similar comments from their own friends or family member, or from a patient.
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