Palliative care


Palliative care is 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." In the past, palliative care was a disease specific approach, but today the World Health Organization takes a more broad approach, that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness.
Palliative care is appropriate for individuals with serious illnesses across the age spectrum and can be provided as the main goal of care or in tandem with curative treatment. 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.
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 for a patient of any age.

Scope

The overall goal of palliative care is to improve quality of life of individuals with serious illness, any life-threatening condition which either reduces an individual's daily function or quality of life or increases caregiver burden, through pain and symptom management, identification and support of caregiver needs, and care coordination. Palliative care can be delivered at any stage of illness alongside other treatments with curative 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 specialty professional 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.

Palliative care versus hospice care

The distinction between palliative care and hospice differs depending on global context.
In the United States, hospice services and palliative care programs share similar goals of mitigating unpleasant symptoms, controlling pain, optimizing comfort, and addressing psychological distress. Hospice care focuses on comfort and psychological support and curative therapies are not pursued. Under the Medicare Hospice Benefit, individuals certified by two physicians to have less than six months to live have access to specialized hospice services through various insurance programs. An individual's hospice benefits are not revoked if that individual lives beyond a six-month period.
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 America currently undergo hospice care. Most of the hospice care occurs at a home environment during the last weeks/months of their lives. Of those patients, 86.6% believe their care is "excellent." Hospice's philosophy is that death is a part of life, so it is personal and unique. Caregivers are encouraged to discuss death with the patients and encourage spiritual exploration.

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:
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. 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.

Practice

Symptom assessment

One instrument used in palliative care is the Edmonton Symptom Assessment Scale, which consists of 8 visual analog scales ranging from 0–100 mm, indicating the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, sensation of well-being, and sometimes shortness of breath. A score of 0 indicates absence of the symptom, and a score of 10 indicates the worst possible severity. The instrument can be completed by the patient, with or without assistance, or by nurses and relatives.

End of life care

Medications used in palliative care can be common medications but used for a different indication based on established practices with varying degrees of evidence. Examples include the use of antipsychotic medications to treat nausea, anticonvulsants to treat pain, and morphine to treat dyspnea. Routes of administration may differ from acute or chronic care, as many people in palliative care lose the ability to swallow. A common alternative route of administration is subcutaneous, as it is less traumatic and less difficult to maintain than intravenous medications. Other routes of administration include sublingual, intramuscular and transdermal. Medications are often managed at home by family or nursing support.
Palliative care interventions in care homes may contribute to lower discomfort for residents with dementia and to improve family member's views of the quality of care. However, higher quality research is needed to support the benefits of these interventions for older people dying in these facilities.

Dealing with distress

For many patients, end of life care can cause emotional and psychological distress, contributing to their total suffering. An interdisciplinary palliative care team consisting of a mental health professional, social worker, counselor, as well as spiritual support such as a chaplain, can play important roles in helping people and their families cope using various methods such as counseling, visualization, cognitive methods, drug therapy and relaxation therapy to address their needs. Palliative pets can play a role in this last category.
Total pain
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

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, coughing, xerostomia, nausea and vomiting, constipation, fever, delirium, excessive oral and pharyngeal secretions.

Psychosocial pain

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

Spiritual pain

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.

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:
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 is a standardized parent-proxy report which assesses cancer treatment-related symptoms. 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:

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, a person signs off their Medicare Part B 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 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, 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.
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 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 Britain 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
In India Tata Memorial Centre, Mumbai has started a physician course in palliative medicine for the first time in the country since 2012.

Regional variation in services

In the United States, hospice and palliative care represent two different aspects of care with similar philosophy, but with different payment systems and location of services. Palliative care services are most often provided in acute care hospitals organized around an interdisciplinary consultation service, with or without an acute inpatient palliative care unit. Palliative care may also be provided in the dying person's home as a "bridge" program between traditional US home care services and hospice care or provided in long-term care facilities. In contrast over 80% of hospice care in the US is provided at home with the remainder provided to people in long-term care facilities or in free standing hospice residential facilities. In the UK hospice is seen as one part of the speciality of palliative care and no differentiation is made between 'hospice' and 'palliative care'.
In the UK palliative care services offer inpatient care, home care, day care and outpatient services, and work in close partnership with mainstream services. Hospices often house a full range of services and professionals for children and adults. In 2015 the UK's palliative care was ranked as the best in the world "due to comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement, and deep community engagement on the issue."

Acceptance

The focus on a person's quality of life has increased greatly since the 1990s. In the United States today, 55% of hospitals with more than 100 beds offer a palliative-care program, and nearly one-fifth of community hospitals have palliative-care programs. A relatively recent development is the palliative-care team, a dedicated health care team that is entirely geared toward palliative treatment.
Physicians practicing palliative care do not always receive support from the people they are treating, family members, healthcare professionals or their social peers. More than half of physicians in one survey reported that they have had at least one experience where a patient's family members, another physician or another health care professional had 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 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.
The provides an article on the stigma around palliative patient care. In this article, it states that many patients with chronic pain are treated as opioid addicts. Patients can build a tolerance to drugs and have to take more and more to manage their pain. The symptoms of chronic pain patients do not show up on scans, so the doctor must go off trust alone. This is the reason that some wait to consult their doctor and endure sometimes years of pain before seeking help.

Popular media

Palliative care was the subject of the 2018 Academy Award-nominated 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 was executive produced by Steven Ungerleider, David C. Ulich and Shoshana R. Ungerleider.