Derek Doyle, OBE, MD
The World Health Organisation (WHO) produced in 2002 a useful definition,(1) valuable when negotiating with local and national health departments who may not be familiar with the essential features of such care provision.
Based on it, the International Association for Hospice and Palliative Care (IAHPC) conducted a consensus process with over 400 participants from 86 countries, and after a series of discussions, rounds, and rankings, the participants agreed on the following definition of palliative care (2):
Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families, and their caregivers.
Throughout 'Getting Started' palliative care will refer to the above definition.
In addition to the definition, the working group which spearheaded this effort, developed the following to describes what is palliative care, what it accomplishes and a set of recommendations to governments.
To achieve palliative care integration, governments should:
This is a reminder that palliative care is not disease-specific, is not restricted to a defined number of months or weeks of life and is centred on quality rather than quality of life. Taken for granted in this definition is that the relatives must also be factored into the care programme because it is impossible to care for a critically ill person if the needs of relatives are not also addressed.
Suffering may be defined as the distress associated with events that threaten the intactness or wholeness of the person. Suffering is health related (SHS) when it is associated with illness or injury of any kind. Health related suffering is serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual and/or emotional functioning.
In clinical practice, it is helpful to have a simple classification of the causes of suffering, so that the complex problems presented by patients can be disentangled, to provide comprehensive palliation and relief of suffering caused by:
The components of palliative care, or the aspects of care and treatment that need to be addressed, follow logically from the causes of suffering. Each must be addressed in the provision of comprehensive palliative care, making a multidisciplinary team approach to care a necessity.
Treatment of pain and physical symptoms are addressed first because it is not possible to deal with the psychosocial aspects of care if the patient has unrelieved pain or other distressing physical symptoms.
The various causes of suffering are interdependent and unrecognised or unresolved problems relating to one cause may cause or exacerbate other aspects of suffering.
Pain and psychological suffering area inter-related:
It is important to differentiate among different (sometimes confusing) terms related:
Palliative care principles are the principles of all good clinical care, whatever the illness or condition, whatever the stage or prognosis, whatever the age, gender, race, class, or creed of the patient.
Palliative techniques or therapies are valuable components of modern palliative care, include medical and surgical therapies or procedures (e.g., radiotherapy, chemotherapy, insertion of stents, paracentesis, internal fixation of fractures, drainage of effusions, and even procedures as simple but valuable as catheterisation stenting). They are employed to palliate symptoms and ease suffering but are only a small part of the spectrum of care known as palliative care, because they are not in themselves comprehensive palliative care.
Specialist palliative care is that provided by a service or team (which may or may not have in-patient beds) where the principal clinicians (physicians, nurses, social worker and other team members) have an advanced training in the management of complex situations/cases. In a few countries where palliative medicine and palliative care nursing are recognised as medical and nursing specialties, the services in which they work are essentially secondary or tertiary referral services.
In some countries these terms are used to distinguish home care services from hospital services, or volunteer-based services provided in the community from services provided by a professional team in a hospital. However, the principles are and should be the same.
The 'modern hospice movement' goes back to England in the 60’s, and in 1973 was renamed 'palliative care' in Canada. Palliative care is the preferred term for health care professionals particularly since it became a nursing specialty and palliative medicine became a medical specialty in in few countries the UK in 1987. The concepts have experienced several transitions (3) and have acquired own characteristics, conserving key aspects/principles.
Hospice care is often related to a prognosis of six months or less and focused on care at the end of life, while palliative care patient at any time, at any stage of illness.
The word hospice is better known to members of the public than palliative care and have different meanings in different countries. It is variously used to refer to a philosophy of care, to the buildings where it is practised, to care offered by unpaid volunteers, or to care in the final days of life.
It is recommended that the term 'palliative care' be used in all professional communications and publications, since the term is understood by and used by health care professionals.
Though the principles of palliative care are applicable in each of the following fields, they are NOT the same as palliative care services:
|Care of the Elderly (Geriatrics)||General practice (Family Medicine)|
|Care of the Chronically Ill||Care of Cancer (Oncology)|
|Care of the Incurable||Pain Clinic/ Pain Relief Service|
Most emphatically palliative care is not euthanasia or physician-assisted suicide (PAS). In 2017, the IAHPC adopted a position statement against euthanasia and PAS which states: "IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnoea"(4).
Depending on the level of health-related suffering. Many of the principles of palliative care are applicable to the management of patients with chronic diseases and should be available and accessible when the suffering requires it.
Depending on the level of health-related suffering. Many of the principles of palliative care are applicable for older persons and should be available and accessible when the suffering requires it.
The provision of high-quality care during the final days and hours of life is an important component of palliative care. However, palliative care should be initiated when the patient becomes symptomatic of their severe disease/condition and should never be withheld until such time as all treatment alternatives for the underlying disease have been exhausted. Palliative care may be appropriate long before the final phase of the disease or condition.
No. Palliative care originated because of the belief that patients at the end of life were not receiving optimal care and there was for a long-time mutual distrust between the practitioners of palliative care and mainstream medicine. Palliative care should be integrated into mainstream medicine.
Palliative care is complementary to the active treatment of the underlying disease, and it will foster palliative care skills for other health care professionals, particularly better pain and symptom control and appreciation of the psychosocial aspects of care.
No. Palliative care was originally separate from mainstream medicine and was frequently practised by very caring individuals who knew little about medicine. However, palliative care has gradually integrated in many health systems and curricula in medical and nursing schools.
No. No patient should ever be told "there is nothing more that can be done"— it is never true and may be seen as abandonment of care. It may be permissible to say there is no treatment available to stop the progression of the underlying disease, but it is always possible to provide care and good symptom control.
No. A request for euthanasia or assisted suicide is usually a plea for better care or evidence of unrelieved or intolerable physical or psychosocial suffering. Depression and psychosocial problems are frequent in patients making requests and both can respond to appropriate care.
Patients suffering intractable symptoms can be treated by sedation; this does not constitute euthanasia or physician-assisted suicide.
No. Most but not all patients needing palliative care have pain of one sort of another but there are usually many other reasons for their distress. Focusing on pain to the exclusion of the others does not help the patient. Palliative medicine doctors have all had advanced training in pain management but not necessarily in invasive measures (though these are less frequently used in palliative care).
Their training has embraced all aspects of suffering – physical, psychosocial, and spiritual –but their certification is in palliative medicine, not pain management. Nevertheless, many of the principles of palliative care are appropriate to the pain management.
Over 56.8 million people are estimated to require palliative care every year including 31.1 million prior to and 25.7 million near the end of life and at least 7% are children.(5) It is estimated that only 7 million patients received palliative care in 2017.(6) Majority of adults (76%) and children (>97%) in need of palliative care live in low and middle income countries.
The most frequent conditions accounting for adult palliative care are cancer, HIV, cerebrovascular diseases, and dementia. HIV/AIDS, premature birth and birth trauma congenital anomalies, and injuries and cancers generates the greatest need for palliative care among children.(5)
In High and Low- and Middle-income countries alike, people are living and dying:
The World Health Assembly (2014) declared that "palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured, and that end-of-life care for individuals is among the critical components of palliative care", and called for palliative care to be included in every country’s health services, as well recommended the access to essential medicines and promote ongoing education and training to care providers.(7)
Emphatically yes! There are many published reports, based on objective as well as subjective observations, showing poorly relieved suffering experienced by people with serious health related suffering and those in the final years and months of life (see Table 1).
They had much physical suffering including high levels of pain, breathlessness, weakness, loss of appetite, nausea and vomiting, constipation, insomnia, sores and convulsions.
Their psychosocial suffering included anxiety, fear and apprehension, depression, loss of dignity, loneliness, a sense of being a burden on others and no longer being valued as a person, feeling that their suffering was not always recognised or taken seriously by their care givers.
Their existential suffering included questions of meaning - of life, death, and suffering; questions about religious faith - its relevance to them, the place of prayer and sacraments, the need for forgiveness.
If health authorities are not impressed with the wealth of evidence from other countries demonstrating the need for palliative care, then research into the unmet suffering and needs of your country/district will need to be done and the evidence shown to the authorities.
Table 1: The spectrum of suffering in patients with advanced disease (8)
|Symptoms||Cancer %||Chronic heart failure %||COPD %||AIDS %|
The goals of palliative care are: