Palliative care (derived from the Latin root palliare, or 'to cloak') is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (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 broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.
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 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.
Palliative care is able to improve healthcare quality in three sectors: physical and emotional relief, strengthening of patient-physician communication and decision-making, and coordinated continuity of care across various healthcare settings, including hospital, home, and hospice. 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. Historically, palliative care services were focused on individuals with incurable cancer, but this framework is now applied to other diseases, including severe heart failure, chronic obstructive pulmonary disease, multiple sclerosis and other neurodegenerative conditions. Forty million people each year are expected to need palliative care, with approximately 78% of this population living in low and middle income countries. However, only 14% of this population is able to receive this kind of care, with a majority in high-income countries, making this an important sector to pay attention to.
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 professional organizations recommend initiating palliative care at the time of diagnosis or when disease-directed options would not improve a patient's prognosis. 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, the term hospice refers specifically to a benefit provided by the federal government since 1982. Hospice care 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 a six-month period. In the United States, in order to be eligible for hospice, patients usually forego treatments aimed at cure, unless they are minors. This is to avoid what is called concurrent care, where two different clinicians are billing for the same service. In 2016 a movement began to extend the reach of concurrent care to adults who were eligible for hospice but not yet emotionally prepared to forego curative treatments.
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.
Over 40% of all dying patients in the United States 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).
The examples and perspective in this section deal primarily with the United States and do not represent a worldwide view of the subject. (July 2022)
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 1974, Balfour Mount coined the term "palliative care". and Paul Henteleff became the director of a new "terminal care" unit at Saint Boniface Hospital in Winnipeg. 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 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 and may even prolong survival.
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 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.
One instrument used in palliative care is the Edmonton Symptom Assessment Scale (ESAS), which consists of eight visual analog scales (VAS) ranging from 0–10, indicating the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, sensation of well-being, and sometimes shortness of breath. A score of 0 indicates absence of the symptom, and a score of 10 indicates the worst possible severity. The instrument can be completed by the patient, with or without assistance, or by nurses and relatives.
Medications used in palliative care can be common medications but used for a different indication based on established practices with varying degrees of evidence. Examples include the use of antipsychotic medications, anticonvulsants, and morphine. 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, 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, and excessive oral and pharyngeal secretions ("Death Rattle"). 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.
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 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 pharmacologic options are suggested to help alleviate these symptoms. For people who do not respond to first-line medications, levomepromazine may be used, however there have been insufficient clinical trials to assess the effectiveness of this medication. Haloperidol and droperidol 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 resources available to patients and families; and psychologically supporting children and families through illness and bereavement.
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.
- Identify the place of treatment (tertiary versus local hospital, intensive care unit, home, hospice, etc.).
- Anticipate symptoms based on the typical disease course of the hypothesized diagnosis.
- Present treatment options to the family proactively, based on care options and resources available in each of the aforementioned care settings. Ensuing management should anticipate transitions of palliative care settings to afford seamless continuity of service provision across health, education, and social care settings.
- Consider both pharmacologic and non-pharmacologic treatment modalities (education and mental health support, administration of hot and cold packs, massage, play therapy, distraction therapy, hypnotherapy, physical therapy, occupational therapy, and complementary therapies) when addressing distressing symptoms. Respite care 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, 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.
Geriatric palliative care
With the transition in the population toward lower child mortality and lower death rates, countries around the world are seeing larger elderly populations. In some countries, this means a growing burden on national resources in the shape of social security and health care payments. As aging populations put increasing pressure on existing resources, long-term palliative care for patients’ non-communicable, chronic conditions has emerged as a necessary approach to increase these patient’s quality of life, through prevention and relief by identifying, assessing, and treating the source of pain and other psychosocial and spiritual problems.
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 US, board certification for physicians in palliative care was through the American Board of Hospice and Palliative Medicine; recently this was changed to be done through any of 11 different speciality boards through an American Board of Medical Specialties-approved procedure. Additionally, board certification is available to osteopathic physicians (D.O.) in the United States through four medical specialty boards through an American Osteopathic Association Bureau of Osteopathic Specialists-approved procedure. More than 50 fellowship programs provide one to two years of specialty training following a primary residency. In the United Kingdom palliative care has been a full specialty of medicine since 1989 and training is governed by the same regulations through the Royal College of Physicians as with any other medical speciality. Nurses, in the United States and internationally, can receive continuing education credits through Palliative Care specific trainings, such as those offered by End-of-Life Nursing Education Consortium (ELNEC).
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, 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, 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.
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 (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, with a point of contact co-ordinating the appropriate support for the individual. They also state that end of life and mental health care 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, 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.
Palliative care was the subject of the 2018 Netflix short documentary, End Game by directors Rob Epstein 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 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 shared it. The letter was subsequently read out by the actor Benedict Cumberbatch and the singer Jarvis Cocker at public events.
Research funded by the UK's National Institute for Health and Care Research (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 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.
- ^ a b Zhukovsky D (2019). Primer of Palliative Care. American Association of Hospice and Palliative Medicine. ISBN 9781889296081.
- ^ "WHO Definition of Palliative Care". WHO. Archived from the original on 4 October 2003. Retrieved 4 December 2019.
- ^ a b Sepúlveda C, Marlin A, Yoshida T, Ullrich A (August 2002). "Palliative Care: the World Health Organization's global perspective". Journal of Pain and Symptom Management. 24 (2): 91–96. doi:10.1016/S0885-3924(02)00440-2. PMID 12231124.
- ^ Patel, FiruzaD; Sharma, SureshC; Khosla, Divya (2012). "Palliative care in India: Current progress and future needs". Indian Journal of Palliative Care. 18 (3): 149. doi:10.4103/0973-1075.105683. ISSN 0973-1075.
- ^ Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. (November 2016). "Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis". JAMA. 316 (20): 2104–2114. doi:10.1001/jama.2016.16840. PMC 5226373. PMID 27893131.
- ^ a b Hoerger M, Wayser GR, Schwing G, Suzuki A, Perry LM (June 2019). "Impact of Interdisciplinary Outpatient Specialty Palliative Care on Survival and Quality of Life in Adults With Advanced Cancer: A Meta-Analysis of Randomized Controlled Trials". Annals of Behavioral Medicine. 53 (7): 674–685. doi:10.1093/abm/kay077. PMC 6546936. PMID 30265282.
- ^ "What is Palliative Care? | Definition of Palliative Care | Get Palliative Care". Archived from the original on 5 July 2020. Retrieved 12 May 2020.
- ^ Patel, FiruzaD; Sharma, SureshC; Khosla, Divya (2012). "Palliative care in India: Current progress and future needs". Indian Journal of Palliative Care. 18 (3): 149. doi:10.4103/0973-1075.105683. ISSN 0973-1075.
- ^ a b National Consensus Project for Quality Palliative Care (2018). "Clinical Practice Guidelines for Quality Palliative Care, 4th edition". Archived from the original on 23 December 2019. Retrieved 18 December 2019.
- ^ Ahluwalia SC, Chen C, Raaen L, Motala A, Walling AM, Chamberlin M, O'Hanlon C, Larkin J, Lorenz K, Akinniranye O, Hempel S (December 2018). "A Systematic Review in Support of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition". Journal of Pain and Symptom Management. 56 (6): 831–870. doi:10.1016/j.jpainsymman.2018.09.008. PMID 30391049. S2CID 53217269.
- ^ "Heart failure – palliative care: MedlinePlus Medical Encyclopedia". medlineplus.gov. Archived from the original on 3 August 2019. Retrieved 30 April 2020.
- ^ Foley P, Hampton J, Hampton A, Hampton R, Oleksy D, Oliver D, Weller BJ (August 2012). "Lesley's story: a case report, and discussion of challenges faced in end-of-life care for progressive neurological disease". Practical Neurology. 12 (4): 244–248. doi:10.1136/practneurol-2012-000263. PMID 22869768. S2CID 38747721.
- ^ Atreya, Shrikant; Sinha, Abhik; Kumar, Raman (2022). "Integration of primary palliative care into geriatric care from the Indian perspective". Journal of Family Medicine and Primary Care. 11 (9): 4913. doi:10.4103/jfmpc.jfmpc_399_22. ISSN 2249-4863.
- ^ "Hospice and Palliative Medicine Specialty Description". American Medical Association. Archived from the original on 27 October 2020. Retrieved 22 October 2020.
- ^ Dy SM, Apostol C, Martinez KA, Aslakson RA (April 2013). "Continuity, coordination, and transitions of care for patients with serious and advanced illness: a systematic review of interventions". Journal of Palliative Medicine. 16 (4): 436–445. doi:10.1089/jpm.2012.0317. hdl:2027.42/140114. PMID 23488450.
- ^ Fawole OA, Dy SM, Wilson RF, Lau BD, Martinez KA, Apostol CC, et al. (April 2013). "A systematic review of communication quality improvement interventions for patients with advanced and serious illness". Journal of General Internal Medicine. 28 (4): 570–577. doi:10.1007/s11606-012-2204-4. PMC 3599019. PMID 23099799.
- ^ "History of Hospice". NHPCO. Retrieved 12 January 2023.
- ^ "Medicare Care Choices Model (MCCM): The First Two Years | CMS". www.cms.gov. Retrieved 12 January 2023.
- ^ a b c d Sibson K, Craig F, Goldman A (2005). "Palliative Care for Children". Handbook of Palliative Care. Blackwell Publishing Ltd. pp. 295–316. doi:10.1002/9780470755877.ch15. ISBN 978-0-470-75587-7.
- ^ a b "Hospice Facts & Figures". NHPCO. Archived from the original on 21 June 2020. Retrieved 12 May 2020.
- ^ Werner D (31 January 2011). "Communicating About Health: Current Issues and Perspectives, by Athena du Pre". Health Communication. 26 (1): 110. doi:10.1080/10410236.2011.527626. ISSN 1041-0236. S2CID 143078786.
- ^ a b Clark D (May 2007). "From margins to centre: a review of the history of palliative care in cancer". The Lancet. Oncology. 8 (5): 430–438. doi:10.1016/S1470-2045(07)70138-9. PMID 17466900.
- ^ "Why Quality of Life Matters, Even in Your Final Hours". The Walrus. 29 May 2019. Archived from the original on 29 June 2021. Retrieved 29 June 2021.
- ^ LeGrand SB, Walsh D, Nelson KA, Davis MP (July 2003). "A syllabus for fellowship education in palliative medicine". The American Journal of Hospice & Palliative Care. 20 (4): 279–289. doi:10.1177/104990910302000410. PMID 12911073. S2CID 25125235.
- ^ Goldstein P, Walsh D, Horvitz LU (September 1996). "The Cleveland Clinic Foundation Harry R. Horvitz Palliative Care Center". Supportive Care in Cancer. 4 (5): 329–333. doi:10.1007/bf01788838. PMID 8883225. S2CID 5322289.
- ^ Morrison RS, Penrod JD, Cassel JB, Caust-Ellenbogen M, Litke A, Spragens L, Meier DE (September 2008). "Cost savings associated with US hospital palliative care consultation programs". Archives of Internal Medicine. 168 (16): 1783–1790. doi:10.1001/archinte.168.16.1783. PMID 18779466.
- ^ Kelley AS, Deb P, Du Q, Aldridge Carlson MD, Morrison RS (March 2013). "Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay". Health Affairs. 32 (3): 552–561. doi:10.1377/hlthaff.2012.0851. PMC 3655535. PMID 23459735.
- ^ Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ (June 2013). "Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers". The Cochrane Database of Systematic Reviews. 2022 (6): CD007760. doi:10.1002/14651858.CD007760.pub2. PMC 4473359. PMID 23744578.
- ^ Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. (August 2010). "Early palliative care for patients with metastatic non-small-cell lung cancer". The New England Journal of Medicine. 363 (8): 733–742. doi:10.1056/NEJMoa1000678. PMID 20818875. S2CID 1128078.
- ^ Temel, Jennifer S.; Greer, Joseph A.; Muzikansky, Alona; Gallagher, Emily R.; Admane, Sonal; Jackson, Vicki A.; Dahlin, Constance M.; Blinderman, Craig D.; Jacobsen, Juliet; Pirl, William F.; Billings, J. Andrew; Lynch, Thomas J. (19 August 2010). "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer". New England Journal of Medicine. 363 (8): 733–742. doi:10.1056/NEJMoa1000678. ISSN 0028-4793. PMID 20818875. S2CID 1128078.
- ^ America's Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals. Center to Advance Palliative Care and the National Palliative Care Research Center. September 2019.
- ^ "Advanced Certification for Palliative Care Programs". Joint Commission. 30 April 2014. Retrieved 17 August 2014.
- ^ a b Edmonton Symptom Assessment System (ESAS) Archived 31 July 2017 at the Wayback Machine from Cancer Care Ontario. Revised 2005 February
- ^ a b Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K (1991). "The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients". Journal of Palliative Care. 7 (2): 6–9. doi:10.1177/082585979100700202. PMID 1714502. S2CID 26165154.
- ^ Currow D, Agar MR, Abernethy AP (2011). "Tackling the Challenges of Clinical Trials in Palliative Care". Pharm Med. 25 (1): 7–15. doi:10.1007/bf03256842. S2CID 34967878. Archived from the original on 11 January 2012. Retrieved 1 June 2011.
- ^ "Palliative Medications". Caresearch: Palliative care knowledge network. Archived from the original on 20 February 2011. Retrieved 28 October 2010.
- ^ a b Hall S, Kolliakou A, Petkova H, Froggatt K, Higginson IJ (March 2011). "Interventions for improving palliative care for older people living in nursing care homes". The Cochrane Database of Systematic Reviews. 2011 (3): CD007132. doi:10.1002/14651858.CD007132.pub2. PMC 6494579. PMID 21412898.
- ^ Bajwah S, Oluyase AO, Yi D, Gao W, Evans CJ, Grande G, et al. (September 2020). "The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers". The Cochrane Database of Systematic Reviews. 2020 (9): CD012780. doi:10.1002/14651858.CD012780.pub2. PMC 8428758. PMID 32996586.
- ^ a b Shepperd, Sasha; Gonçalves-Bradley, Daniela C.; Straus, Sharon E.; Wee, Bee (16 March 2021). "Hospital at home: home-based end-of-life care". The Cochrane Database of Systematic Reviews. 3 (7): CD009231. doi:10.1002/14651858.CD009231.pub3. ISSN 1469-493X. PMC 8092626. PMID 33721912.
- ^ Strang P, Strang S, Hultborn R, Arnér S (March 2004). "Existential pain—an entity, a provocation, or a challenge?". Journal of Pain and Symptom Management. 27 (3): 241–250. doi:10.1016/j.jpainsymman.2003.07.003. PMID 15010102.
- ^ Kathryn Batson et al. "The Effect of a Therapy Dog on Socialization and Physiological Indicators of Stress in Persons Diagnosed with Alzheimer's Disease" in 'Companion Animals in Human Health' Editors – Cindy C. Wilson and Dennis C. Turner, Sage Publications 1998, ISBN 0-7619-1062-X
- ^ Saunders C (14 February 1964). "Care of patients suffering from terminal illness at St Joseph's Hospice, Hackney, London". Nursing Mirror: vii–x.
- ^ a b c Rome RB, Luminais HH, Bourgeois DA, Blais CM (2011). "The role of palliative care at the end of life". The Ochsner Journal. 11 (4): 348–352. PMC 3241069. PMID 22190887.
- ^ "Palliative care – shortness of breath: MedlinePlus Medical Encyclopedia". medlineplus.gov. Archived from the original on 5 June 2020. Retrieved 30 April 2020.
- ^ Blinderman CD, Billings JA (December 2015). "Comfort Care for Patients Dying in the Hospital". The New England Journal of Medicine. 373 (26): 2549–2561. doi:10.1056/NEJMra1411746. PMID 26699170.
- ^ Kain M, Bennett H, Yi M, Robinson B, James M (August 2020). "30-day mortality following palliative radiotherapy". Journal of Medical Imaging and Radiation Oncology. 64 (4): 570–579. doi:10.1111/1754-9485.13073. PMID 32592442. S2CID 220119083.
- ^ a b Kelley AS, Morrison RS (August 2015). "Palliative Care for the Seriously Ill". The New England Journal of Medicine. 373 (8): 747–755. doi:10.1056/nejmra1404684. PMC 4671283. PMID 26287850.
- ^ Salt S, Mulvaney CA, Preston NJ (May 2017). "Drug therapy for symptoms associated with anxiety in adult palliative care patients". The Cochrane Database of Systematic Reviews. 5 (6): CD004596. doi:10.1002/14651858.CD004596.pub3. PMC 6481598. PMID 28521070.
- ^ a b c Silva RS, Caldeira S, Coelho AN, Apóstolo JL (November 2020). "Forgiveness facilitation in palliative care: a scoping review". JBI Evidence Synthesis. 18 (11): 2196–2230. doi:10.11124/JBISRIR-D-19-00286. PMID 32813428. S2CID 221179683.
- ^ Puchalski CM, Vitillo R, Hull SK, Reller N (June 2014). "Improving the spiritual dimension of whole person care: reaching national and international consensus". Journal of Palliative Medicine. 17 (6): 642–656. doi:10.1089/jpm.2014.9427. PMC 4038982. PMID 24842136.
- ^ Thuné-Boyle IC, Stygall JA, Keshtgar MR, Newman SP (July 2006). "Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of the literature". Social Science & Medicine. 63 (1): 151–164. doi:10.1016/j.socscimed.2005.11.055. PMID 16427173.
- ^ McSherry W, Smith J. Spiritual care. In: McSherry W, McSherry R, Watson R, editors. In care in nursing – principles, values and skills. New York: Oxford University Press, 2012;117–31.
- ^ a b Vilalta A, Valls J, Porta J, Viñas J (May 2014). "Evaluation of spiritual needs of patients with advanced cancer in a palliative care unit". Journal of Palliative Medicine. 17 (5): 592–600. doi:10.1089/jpm.2013.0569. PMC 4012638. PMID 24745870.
- ^ Weathers E, McCarthy G, Coffey A (April 2016). "Concept Analysis of Spirituality: An Evolutionary Approach". Nursing Forum. 51 (2): 79–96. doi:10.1111/nuf.12128. PMID 25644366.
- ^ Candy B, Jones L, Varagunam M, Speck P, Tookman A, King M (May 2012). "Spiritual and religious interventions for well-being of adults in the terminal phase of disease". The Cochrane Database of Systematic Reviews (5): CD007544. doi:10.1002/14651858.CD007544.pub2. PMID 22592721.
- ^ Cox L, Darvill E, Dorman S (November 2015). "Levomepromazine for nausea and vomiting in palliative care". The Cochrane Database of Systematic Reviews. 2017 (11): CD009420. doi:10.1002/14651858.CD009420.pub3. PMC 6481825. PMID 26524693.
- ^ Murray-Brown F, Dorman S (November 2015). "Haloperidol for the treatment of nausea and vomiting in palliative care patients". The Cochrane Database of Systematic Reviews. 2020 (11): CD006271. doi:10.1002/14651858.CD006271.pub3. PMC 6481565. PMID 26524474.
- ^ Storrar J, Hitchens M, Platt T, Dorman S (November 2014). "Droperidol for treatment of nausea and vomiting in palliative care patients". The Cochrane Database of Systematic Reviews. 2014 (11): CD006938. doi:10.1002/14651858.CD006938.pub3. PMC 7265628. PMID 25429434.
- ^ Good P, Richard R, Syrmis W, Jenkins-Marsh S, Stephens J (April 2014). "Medically assisted hydration for adult palliative care patients". The Cochrane Database of Systematic Reviews. 2015 (4): CD006273. doi:10.1002/14651858.CD006273.pub3. PMC 8988261. PMID 24760678.
- ^ Good P, Richard R, Syrmis W, Jenkins-Marsh S, Stephens J (April 2014). "Medically assisted nutrition for adult palliative care patients". The Cochrane Database of Systematic Reviews. 2014 (4): CD006274. doi:10.1002/14651858.CD006274.pub3. PMC 7388544. PMID 24760679.
- ^ a b Faull C, Carter Y, Daniels L (2005). Handbook of palliative care (2nd ed.). Malden, MA: Blackwell Pub. ISBN 978-0-470-75587-7. OCLC 212125356.
- ^ Savedra MC, Tesler MD, Holzemer WL, Wilkie DJ, Ward JA (October 1989). "Pain location: validity and reliability of body outline markings by hospitalized children and adolescents". Research in Nursing & Health. 12 (5): 307–314. doi:10.1002/nur.4770120506. PMID 2798951.
- ^ Anand KJ, Hickey PR (November 1987). "Pain and its effects in the human neonate and fetus". The New England Journal of Medicine. 317 (21): 1321–1329. doi:10.1097/00132586-198808000-00042. PMID 3317037.
- ^ Schechter N, Berde CB, Yaster M (2003). Pain in infants, children, and adolescents (2nd ed.). Philadelphia: Lippincott Williams & Wilkins. ISBN 978-0-7817-2644-3. OCLC 808596673.
- ^ Gauvain-Piquard A, Rodary C, Rezvani A, Serbouti S (June 1999). "The development of the DEGR(R): A scale to assess pain in young children with cancer". European Journal of Pain. 3 (2): 165–176. doi:10.1053/eujp.1999.0118. PMID 10700346. S2CID 14580922.
- ^ Committee on Bioethics (August 2000). "Palliative Care for Children". American Academy of Pediatrics.
- ^ Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, et al. (February 2000). "Symptoms and suffering at the end of life in children with cancer". The New England Journal of Medicine. 342 (5): 326–333. doi:10.1056/NEJM200002033420506. PMID 10655532.
- ^ World Health Organization (2012). The selection and use of essential medicines : report of the WHO Expert Committee, March 2011 (including the 17th WHO model list of essential medicines and the 3rd WHO model list of essential medicines for children). Geneva: World Health Organization. hdl:10665/44771. ISBN 9789241209656. ISSN 0512-3054. WHO technical report series;965.
- ^ Stockman JA (January 2008). "Symptoms Affecting Children With Malignancies During the Last Month of Life: A Nationwide Follow-up". Yearbook of Pediatrics. 2008: 448–449. doi:10.1016/S0084-3954(08)70519-0.
- ^ Drake R, Frost J, Collins JJ (July 2003). "The symptoms of dying children". Journal of Pain and Symptom Management. 26 (1): 594–603. doi:10.1016/S0885-3924(03)00202-1. PMID 12850642.
- ^ Hilton T, Orr RD, Perkin RM, Ashwal S (May 1993). "End of life care in Duchenne muscular dystrophy". Pediatric Neurology. 9 (3): 165–177. doi:10.1016/0887-8994(93)90080-V. PMID 8352847.
- ^ Pritchard M, Burghen E, Srivastava DK, Okuma J, Anderson L, Powell B, et al. (May 2008). "Cancer-related symptoms most concerning to parents during the last week and last day of their child's life". Pediatrics. 121 (5): e1301–e1309. doi:10.1542/peds.2007-2681. PMID 18450873. S2CID 207160955.
- ^ Woodgate RL, Degner LF, Yanofsky R (September 2003). "A different perspective to approaching cancer symptoms in children". Journal of Pain and Symptom Management. 26 (3): 800–817. doi:10.1016/S0885-3924(03)00285-9. PMID 12967729.
- ^ Hinds PS, Quargnenti AG, Wentz TJ (April 1992). "Measuring symptom distress in adolescents with cancer". Journal of Pediatric Oncology Nursing. 9 (2): 84–86. doi:10.1177/104345429200900238. PMID 1596393. S2CID 34253777.
- ^ Collins JJ, Byrnes ME, Dunkel IJ, Lapin J, Nadel T, Thaler HT, et al. (May 2000). "The measurement of symptoms in children with cancer". Journal of Pain and Symptom Management. 19 (5): 363–377. doi:10.1016/S0885-3924(00)00127-5. PMID 10869877.
- ^ Hockenberry-Eaton M, Manteuffel B, Bottomley S (July 1997). "Development of two instruments examining stress and adjustment in children with cancer". Journal of Pediatric Oncology Nursing. 14 (3): 178–185. doi:10.1016/S1043-4542(97)90054-0. PMID 9260409.
- ^ Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM (April 1998). "The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance". Journal of Behavioral Medicine. 21 (2): 179–204. doi:10.1023/a:1018779908502. PMID 9591169. S2CID 23995360.
- ^ Varni JW, Seid M, Kurtin PS (2001). Pediatric Quality of Life Inventory 4.0 Generic Core Scales (Report). doi:10.1037/t54487-000.
- ^ a b Levetown M (May 2008). "Communicating with children and families: from everyday interactions to skill in conveying distressing information". Pediatrics. 121 (5): e1441–e1460. doi:10.1542/peds.2008-0565. PMID 18450887.
- ^ a b c Garwick AW, Patterson J, Bennett FC, Blum RW (September 1995). "Breaking the news. How families first learn about their child's chronic condition". Archives of Pediatrics & Adolescent Medicine. 149 (9): 991–997. doi:10.1001/archpedi.1995.02170220057008. PMID 7655604.
- ^ a b Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP (2 March 2000). "SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer". The Oncologist. 5 (4): 302–311. doi:10.1634/theoncologist.5-4-302. PMID 10964998.
- ^ a b Chochinov HM (2012). Dignity therapy : final words for final days. Oxford: Oxford University Press. ISBN 978-0-19-517621-6. OCLC 714030350.
- ^ a b Cassell EJ (2004). The nature of suffering and the goals of medicine (2nd ed.). New York: Oxford University Press. ISBN 1-60256-743-3. OCLC 173843216.
- ^ a b c Hinds PS (September 2004). "The hopes and wishes of adolescents with cancer and the nursing care that helps". Oncology Nursing Forum. 31 (5): 927–934. doi:10.1188/04.ONF.927-934. PMID 15378093.
- ^ "Parents are meaningfully involved in decisions on the care of their critically ill baby when they are given options not recommendations". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 9 March 2021. doi:10.3310/alert_45227. S2CID 242477064.
- ^ Marlow, Neil; Shaw, Chloe; Connabeer, Kat; Aladangady, Narendra; Gallagher, Katie; Drew, Paul (17 September 2020). "End-of-life decisions in neonatal care: a conversation analytical study". Archives of Disease in Childhood - Fetal and Neonatal Edition. 106 (2): 184–188. doi:10.1136/archdischild-2020-319544. ISSN 1359-2998. PMID 32943530. S2CID 221788612.
- ^ Mack JW, Grier HE (February 2004). "The Day One Talk". Journal of Clinical Oncology. 22 (3): 563–566. doi:10.1200/JCO.2004.04.078. PMID 14752081.
- ^ Mack JW, Hilden JM, Watterson J, Moore C, Turner B, Grier HE, et al. (December 2005). "Parent and physician perspectives on quality of care at the end of life in children with cancer". Journal of Clinical Oncology. 23 (36): 9155–9161. doi:10.1200/JCO.2005.04.010. PMID 16172457.
- ^ Snethen JA, Broome ME, Knafl K, Deatrick JA, Angst DB (June 2006). "Family patterns of decision-making in pediatric clinical trials". Research in Nursing & Health. 29 (3): 223–232. doi:10.1002/nur.20130. PMID 16676342.
- ^ Back AL, Bauer-Wu SM, Rushton CH, Halifax J (December 2009). "Compassionate silence in the patient-clinician encounter: a contemplative approach". Journal of Palliative Medicine. 12 (12): 1113–1117. doi:10.1089/jpm.2009.0175. PMC 2939848. PMID 19698026.
- ^ Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, et al. (October 2008). "Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment". JAMA. 300 (14): 1665–1673. doi:10.1001/jama.300.14.1665. PMC 2853806. PMID 18840840.
- ^ Mack JW, Joffe S (February 2014). "Communicating about prognosis: ethical responsibilities of pediatricians and parents". Pediatrics. 133 Suppl 1 (Suppl 1): S24–S30. doi:10.1542/peds.2013-3608E. PMID 24488537.
- ^ "John Hausdorff, MD". pub.hematology.org. 1 July 2017. Archived from the original on 4 July 2020. Retrieved 12 May 2020.
- ^ du Pre A (2017). "Social Support, Family Caregivers, and End of Life". Communicating About Health: Current Issues and Perspectives. New York, New York: Oxford University Press. pp. 208–209. ISBN 9780190275686.
- ^ Saraiya B, Bodnar-Deren S, Leventhal E, Leventhal H (December 2008). "End-of-life planning and its relevance for patients' and oncologists' decisions in choosing cancer therapy". Cancer. 113 (12 Suppl): 3540–3547. doi:10.1002/cncr.23946. PMC 2606925. PMID 19058149.
- ^ O'Leary KJ, Kulkarni N, Landler MP, Jeon J, Hahn KJ, Englert KM, Williams MV (January 2010). "Hospitalized patients' understanding of their plan of care". Mayo Clinic Proceedings. 85 (1): 47–52. doi:10.4065/mcp.2009.0232. PMC 2800283. PMID 20042561.
- ^ Kar, SS; Subitha, L; Iswarya, S (2015). "Palliative care in India: Situation assessment and future scope". Indian Journal of Cancer. 52 (1): 99. doi:10.4103/0019-509x.175578. ISSN 0019-509X.
- ^ American Board of Medical Specialties, ABMS Establishes New Subspecialty Certificate in Hospice and Palliative Medicine Archived 16 November 2010 at the Wayback Machine, 6 October 2006, Retrieved 11 September 2010.
- ^ American Board of Medical Specialties, ABMS Guide to Physician Specialties Archived 31 July 2017 at the Wayback Machine, 2011, p. 2, Retrieved 11 September 2010.
- ^ Thayyil J, Cherumanalil JM (September 2012). "Assessment of status of patients receiving palliative home care and services provided in a rural area-kerala, India". Indian Journal of Palliative Care. 18. 18 (3): 213–218. doi:10.4103/0973-1075.105693. PMC 3573477. PMID 23440060.
- ^ "Specialties & Subspecialties". American Osteopathic Association. Archived from the original on 13 August 2015. Retrieved 23 September 2012.
- ^ American Academy of Hospice & Palliative Medicine. "American Academy of Hospice and Palliative Medicine". Aahpm.org. Archived from the original on 23 April 2014. Retrieved 21 November 2014.
- ^ Ferrell BR, Virani R, Grant M, Rhome A, Malloy P, Bednash G, Grimm M (February 2005). "Evaluation of the End-of-Life Nursing Education Consortium undergraduate faculty training program". Journal of Palliative Medicine. 8 (1): 107–114. doi:10.1089/jpm.2005.8.107. PMID 15662179.
- ^ "In-Home Palliative Care Allows More Patients to Die at Home, Leading to Higher Satisfaction and Lower Acute Care Utilization and Costs". Agency for Healthcare Research and Quality. 3 April 2013. Archived from the original on 14 March 2020. Retrieved 9 July 2013.
- ^ "Quality of Death Index 2015: Ranking palliative care across the world". The Economist Intelligence Unit. 6 October 2015. Archived from the original on 17 June 2020. Retrieved 8 October 2015; "UK end-of-life care 'best in world'". BBC. 6 October 2015. Archived from the original on 11 April 2020. Retrieved 8 October 2015.
- ^ "Ambitions for Palliative and End of Life Care: A national framework for local action 2021-2026" (PDF). National Palliative and End of Life Care Partnership. May 2021. Retrieved 20 April 2022.
- ^ Center to Advance Palliative Care, www.capc.org
- ^ Lynn, Joanne (2004). Sick to death and not going to take it anymore!: reforming health care for the last years of life. Berkeley: University of California Press. p. 72. ISBN 978-0-520-24300-2.
- ^ Goldstein NE, Cohen LM, Arnold RM, Goy E, Arons S, Ganzini L (March 2012). "Prevalence of formal accusations of murder and euthanasia against physicians". Journal of Palliative Medicine. 15 (3): 334–339. doi:10.1089/jpm.2011.0234. PMC 3295854. PMID 22401355.
- ^ "How to improve end-of-life care for people with mental illness". NIHR Evidence. 28 February 2022. doi:10.3310/alert_49015. S2CID 247180312. Archived from the original on 23 June 2022. Retrieved 4 July 2022.
- ^ Edwards D, Anstey S, Coffey M, Gill P, Mann M, Meudell A, Hannigan B (December 2021). "End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study)". Palliative Medicine. 35 (10): 1747–1760. doi:10.1177/02692163211037480. PMC 8637363. PMID 34479457.
- ^ Petrova M, Wong G, Kuhn I, Wellwood I, Barclay S (December 2021). "Timely community palliative and end-of-life care: a realist synthesis". BMJ Supportive & Palliative Care. doi:10.1136/bmjspcare-2021-003066. PMID 34887313. S2CID 245013480.
- ^ "End of life care should not wait for prediction of death". NIHR Evidence. 26 April 2022. doi:10.3310/post_50369. S2CID 249936671. Archived from the original on 5 July 2022. Retrieved 4 July 2022.
- ^ Dubin RE, Kaplan A, Graves L, Ng VK (December 2017). "Acknowledging stigma: Its presence in patient care and medical education". Canadian Family Physician. 63 (12): 906–908. PMC 5729132. PMID 29237624.
- ^ "Stream It Or Skip It: 'End Game' On Netflix, A Short Documentary About Dying Gracefully". Decider. 7 May 2018. Archived from the original on 30 April 2019. Retrieved 10 April 2020.
- ^ "How This Doctor Is Bringing Human Connection Back to End-of-Life Care". Forbes. 29 August 2018. Archived from the original on 26 June 2020. Retrieved 10 April 2020.
- ^ "Thank you letter to David Bowie from a palliative care doctor". British Medical Journal Supportive & Palliative Care. 16 January 2016. Archived from the original on 28 December 2021. Retrieved 30 December 2021.
- ^ "David Bowie's son shares powerful letter". 18 January 2016. Archived from the original on 28 December 2021. Retrieved 30 December 2021.
- ^ "Benedict Cumberbatch read out a letter to Bowie by a palliative care doctor". Wales Online. 6 June 2016. Archived from the original on 28 December 2021. Retrieved 30 December 2021.
- ^ "End of life care: research highlights the importance of conversations and need for equal access". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 31 March 2022. doi:10.3310/collection_49245. S2CID 247873633.
- ^ "Team work and proactive healthcare could help people with severe mental illness receive good end-of-life care". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 28 February 2022. doi:10.3310/alert_49015. S2CID 247180312.
- ^ Edwards D, Anstey S, Coffey M, Gill P, Mann M, Meudell A, Hannigan B (December 2021). "End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study)". Palliative Medicine. 35 (10): 1747–1760. doi:10.1177/02692163211037480. PMC 8637363. PMID 34479457.
- ^ "A highly personalised approach to end of life care is needed to help Gypsy, Traveller and Roma communities". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 17 December 2021. doi:10.3310/alert_48747. S2CID 245290694.
- ^ Dixon KC, Ferris R, Kuhn I, Spathis A, Barclay S (February 2021). "Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis". BMJ Supportive & Palliative Care: bmjspcare–2020–002676. doi:10.1136/bmjspcare-2020-002676. PMID 33619223. S2CID 231992307.
- ^ Hardelid P, Dattani N, Gilbert R (August 2014). "Estimating the prevalence of chronic conditions in children who die in England, Scotland and Wales: a data linkage cohort study". BMJ Open. 4 (8): e005331. doi:10.1136/bmjopen-2014-005331. PMC 4127921. PMID 25085264.; Lay summary in: "Most children with life-limiting conditions still die in hospital, not home or hospice". 20 July 2021. doi:10.3310/alert_46991. S2CID 242843746.
- ^ Gibson-Smith D, Jarvis SW, Fraser LK (December 2020). "Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study". Archives of Disease in Childhood. 106 (8): 780–785. doi:10.1136/archdischild-2020-319700. PMC 8311108. PMID 33355156.
- ^ "Nurses and pharmacists are key to improving access to end of life medicines for people being cared for at home". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 15 June 2021. doi:10.3310/alert_46494. S2CID 241904445.
- ^ Latter S, Campling N, Birtwistle J, Richardson A, Bennett MI, Ewings S, et al. (September 2020). "Supporting patient access to medicines in community palliative care: on-line survey of health professionals' practice, perceived effectiveness and influencing factors". BMC Palliative Care. 19 (1): 148. doi:10.1186/s12904-020-00649-3. PMC 7517636. PMID 32972414.
- ^ "Terminally ill patients and their families may need more help to manage their medicines". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 16 September 2020. doi:10.3310/alert_41179. S2CID 242429298.
- ^ Wilson E, Caswell G, Latif A, Anderson C, Faull C, Pollock K (May 2020). "An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study". BMC Palliative Care. 19 (1): 66. doi:10.1186/s12904-020-0537-z. PMC 7216477. PMID 32393231.
- ^ "End of life care should not wait for prediction of death". NIHR Evidence (Plain English summary). National Institute for Health and Care Research. 26 April 2022. doi:10.3310/post_50369. S2CID 249936671. Retrieved 4 July 2022.
- ^ Petrova M, Wong G, Kuhn I, Wellwood I, Barclay S (December 2021). "Timely community palliative and end-of-life care: a realist synthesis". BMJ Supportive & Palliative Care: bmjspcare–2021–003066. doi:10.1136/bmjspcare-2021-003066. PMID 34887313. S2CID 245013480.