![]() | The examples and perspective in this article deal primarily with Australia and do not represent a worldwide view of the subject.(August 2014) |
Advance care planning is a process that enables individuals with decisional mental capacity to make plans about their future health care. [1] Advance care plans provide direction to healthcare professionals when a person is not in a position to make and/or communicate their own healthcare choices. Advance care planning is applicable to adults at all stages of life. [2] Participation in advance care planning has been shown to reduce stress and anxiety for patients and their families, and lead to improvements in end of life care. [3] Older adults are more directly concerned as they may experience a situation where advance care planning can be useful. However, a minority use them. A research conducted in Switzerland with people aged 71 to 80 showed that better knowledge on advance care planning dispositions could improve the perception older people have of them. Communication on dispositions should take into account individual knowledge levels and address commonly enunciated barriers that seem to diminish with increased knowledge. [4]
The main components of advance care planning include the nomination of a substitute decision maker, and the completion of an advance care directive.
Advance care planning is applicable to all adults in all stages of life. [2] Advance care planning aims to allow people to live well, and when death approaches, die in accordance with their personal values. [5] Advance care planning is only applicable when the individual cannot make and/or communicate decisions about what they want in relation to their healthcare. [6] If advance care planning has occurred, patients who have lost capacity or the ability to communicate or both, are able to continue to have a say in their medical care. [7] This has been shown to improve end of life care, and provide improved outcomes for both patients and their surviving relatives. [3]
While applicable to all stages of life, it is particularly applicable to perioperative planning and end-of-life care decision making, since approximately 1 in 4 people lose decision making capacity when approaching the end of their life. [8] [9] Results of a systematic review indicate there are several prognostic indicators to help identify patients who may benefit from advance care planning discussions while still in the primary care setting. [10]
Although ACP is potentially appropriate for nearly all adult patients, given the realities of a busy practice, it would be useful to have a system for identifying patients with a more limited prognosis.
Federal and state legislation in the US, [11] Australia, [12] Canada [13] and the UK [14] supports the right of patients to refuse unwanted medical treatments. People can also express their preferences through written advance directives or by advising their appointed substitute decision maker about their wishes for when they are unable to make or communicate these decisions/wishes themselves.
There are two methods by which the communication of an individual's preferences can be known. These are:
Findings from a systematic review suggest the value and importance that various types of decision aids have for patients to use and help clarify their goals. [8]
A substitute decision maker makes decisions on behalf of an individual only when that individual does not have the capacity to make/communicate decisions for themselves. [15]
There are a number of methods by which a substitute decision maker can be identified. The ideal method is the appointment of a person using a statutory document. In the absence of a statutory document the substitute decision maker may be a "person responsible" as listed in order of authority in legislation. [15]
A substitute decision maker can be chosen by an individual following completion of relevant paperwork, can be assigned to the person by law in the absence of a chosen substitute decision maker (e.g. family member or carer), or can be appointed for the person (e.g. guardian appointed by a guardianship tribunal). [16]
Substitute decision makers make decisions based on the principles of either substituted judgement or best interests. [2] Substituted judgement is when the substitute decision maker arrives at a decision based on the best approximation of what they believe the person would want. This decision should be informed by both the known wishes of the person and the best available healthcare advice. [17] Best interests decision making requires the substitute decision maker to focus on the patient's best interests.
Many, but not all, jurisdictions have legislation supporting the appointment of a substitute decision maker through a statutory document. They have different names depending on the jurisdiction:
Jurisdiction | Substitute Decision Maker Type | |
---|---|---|
Australia | Australian Capital Territory | Enduring Power of Attorney [18] |
New South Wales | Enduring Guardian [19] | |
Northern Territory | N/A | |
Queensland | Enduring Power of Attorney [20] | |
South Australia | Medical Power of Attorney [21] | |
Tasmania | Enduring Guardian [22] | |
Victoria | Medical Treatment Decision Maker [23] | |
Western Australia | Enduring Power of Guardianship [24] | |
United Kingdom | Lasting power of attorney - health and welfare [25] | |
United States | Health care proxy | |
Canada | Newfoundland and Labrador | Substitute decision maker [26] |
Nova Scotia | Delegate Decision maker [27] | |
New Brunswick | Power of Attorney for personal care [28] | |
Prince Edward Island | Health Care Proxy [29] | |
Quebec | Mandatary [30] | |
Ontario | Power of Attorney for Personal Care [31] | |
Manitoba | Health Care Proxy [32] | |
Saskatchewan | Health Care Proxy [33] | |
Alberta | Healthcare Agent [34] | |
British Columbia | Temporary Substitute Decision Maker [35] | |
Yukon Territory | Health Care Proxy [36] | |
Northwest Territories | Health Care Agent [37] | |
Nunavut | N/A |
An advance care directive is a document detailing an individual's health care preferences. This may include personal values and life goals, describe circumstances the person would find unacceptable, identify preferences relating to specific medical interventions, or a combination of these. [2]
Advance care directives may be written on specifically designed forms, but can also take the form of a written letter or statement. [38] Inclusion of a doctor in the completion of an advance care directive will assist in ensuring that an individual's wishes are clear and written in a manner that is easy for substitute decision makers and/or medical staff to interpret and follow them in the future. Having a physician witness the document will reinforce this by showing future medical staff that the document contains information about informed decisions due to the assistance of a physician. [39]
Some countries do not use the term 'directive', due to advance statements and/or advance care plans not usually having the legal standing to enforce a directive (for instance, a patient cannot direct a doctor to give him a specific treatment at a later time-point i.e. when she/he loses decisional capacity). In the United Kingdom, Advance Decisions, or Advance Decisions to Refuse Treatment (short: 'ADRT') have a legal standing under the UK Mental Capacity Act (2005). They can be written down and signed by patients. Such an ADRT must be specific about the treatment that is being refused and the circumstances in which the refusal will apply. To be valid, the person must have been competent and understood the decision when they signed the ADRT. Where the patient's advance decision relates to a refusal of potentially life-saving or life prolonging treatment, this must be recorded in writing and witnessed. Any advance refusal is legally binding, providing that the patient is an adult, the patient was competent and properly informed when reaching the prior decision. It is clearly applicable to the present circumstances and there is no reason to believe that the patient has changed their mind. If an advance decision does not meet these criteria but appears to set out a clear indication of the patient's wishes, it will not be legally binding but should be taken into consideration in determining the patient's best interests. An example of an ADRT is the national form and guidance published by NHS Wales on their Advance and Future Care Planning site. [40]
The latest evidence indicates that advance care planning (ACP) may help to increase documentation by medical staff regarding discussions with participants, and improve an individual's depression. [41] This involves discussing an individual's future care plan in consideration of the individual's preferences and values. The findings are however, based on low-quality evidence as there is a need for further evidence from large studies to fully explore the effects of ACP for older adults. [41]
Advance care planning was defined by an international white paper as involving individuals with decisional mental capacity at the outset, being able to be fully involved in plans and discussions about their health care. [1] This has led to some countries in the United Kingdom using 'Future Care Planning' [42] [43] as an umbrella term, to include both advance care planning for those with capacity, and a planning for those with diminished or absent mental capacity (Best Interests decision making as defined by the UK Mental Capacity Act). Professor Mark Taubert, a palliative care consultant who is lead for Advance & Future Care Planning in Wales, published a position paper on this in 2022, [44] and NHS Scotland has also adopted Future Care Planning as an umbrella term, under which Advance Care Planning or Anticipatory Care planning are only a part-component.
An advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. In the U.S. it has a legal status in itself, whereas in some countries it is legally persuasive without being a legal document.
A do-not-resuscitate order (DNR), also known as Do Not Attempt Resuscitation (DNAR), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), no code or allow natural death, is a medical order, written or oral depending on the jurisdiction, indicating that a person should not receive cardiopulmonary resuscitation (CPR) if that person's heart stops beating. Sometimes these decisions and the relevant documents also encompass decisions around other critical or life-prolonging medical interventions. The legal status and processes surrounding DNR orders vary in different polities. Most commonly, the order is placed by a physician based on a combination of medical judgement and patient involvement.
An emergency department (ED), also known as an accident and emergency department (A&E), emergency room (ER), emergency ward (EW) or casualty department, is a medical treatment facility specializing in emergency medicine, the acute care of patients who present without prior appointment; either by their own means or by that of an ambulance. The emergency department is usually found in a hospital or other primary care center.
The incremental cost-effectiveness ratio (ICER) is a statistic used in cost-effectiveness analysis to summarise the cost-effectiveness of a health care intervention. It is defined by the difference in cost between two possible interventions, divided by the difference in their effect. It represents the average incremental cost associated with 1 additional unit of the measure of effect. The ICER can be estimated as:
Palliative care 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, illnesses including other problems whether 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.
A patient is any recipient of health care services that are performed by healthcare professionals. The patient is most often ill or injured and in need of treatment by a physician, nurse, optometrist, dentist, veterinarian, or other health care provider.
Primary care is the day-to-day healthcare given by a health care provider. Typically this provider acts as the first contact and principal point of continuing care for patients within a healthcare system, and coordinates other specialist care that the patient may need. Patients commonly receive primary care from professionals such as a primary care physician, a physician assistant, a physical therapist, or a nurse practitioner. In some localities, such a professional may be a registered nurse, a pharmacist, a clinical officer, or an Ayurvedic or other traditional medicine professional. Depending on the nature of the health condition, patients may then be referred for secondary or tertiary care.
Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced heart disease than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.
The Patient Self-Determination Act (PSDA) was passed by the United States Congress in 1990 as an amendment to the Omnibus Budget Reconciliation Act of 1990. Effective on December 1, 1991, this legislation required many hospitals, nursing homes, home health agencies, hospice providers, health maintenance organizations (HMOs), and other health care institutions to provide information about advance health care directives to adult patients upon their admission to the healthcare facility. This law does not apply to individual physicians.
In the field of medicine, a healthcare proxy is a document with which a patient appoints an agent to legally make healthcare decisions on behalf of the patient, when the patient is incapable of making and executing the healthcare decisions stipulated in the proxy. Once the healthcare proxy is effective, the agent continues making healthcare decisions as long as the primary individual is legally competent to decide. Moreover, in legal-administrative functions, the healthcare proxy is a legal instrument akin to a "springing" healthcare power of attorney. The proxy must declare the healthcare agent who will gain durable power attorney. This document also notifies of the authority given from the principal to the agent and states the limitations of this authority.
End-of-life care (EOLC) refers to health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotional needs, physical comfort, spiritual needs, and practical tasks.
Healthcare in the United Kingdom is a devolved matter, with England, Northern Ireland, Scotland and Wales each having their own systems of publicly funded healthcare, funded by and accountable to separate governments and parliaments, together with smaller private sector and voluntary provision. As a result of each country having different policies and priorities, a variety of differences have developed between these systems since devolution.
Unwarranted variation in health care service delivery refers to medical practice pattern variation that cannot be explained by illness, medical need, or the dictates of evidence-based medicine. It is one of the causes of low value care often ignored by health systems.
Both Euthanasia and Assisted Suicide are illegal in the United Kingdom and could be prosecuted as murder or manslaughter.
A surrogate decision maker, also known as a health care proxy or as agents, is an advocate for incompetent patients. If a patient is unable to make decisions for themselves about personal care, a surrogate agent must make decisions for them. If there is a durable power of attorney for health care, the agent appointed by that document is authorized to make health care decisions within the scope of authority granted by the document. If people have court-appointed guardians with authority to make health care decisions, the guardian is the authorized surrogate.
POLST is an approach to improving end-of-life care in the United States, encouraging providers to speak with the severely ill and create specific medical orders to be honored by health care workers during a medical crisis. POLST began in Oregon in 1991 and currently exists in 46 states; some of the 46 states have the program in development. The POLST document is a standardized, portable, brightly colored single page medical order that documents a conversation between a provider and an individual with a serious illness or frailty towards the end of life. A POLST form allows emergency medical services to provide treatment that the individual prefers before possibly transporting to an emergency facility.
Health information on the Internet refers to all health-related information communicated through or available on the Internet.
The NHS Plan 2000 was a ten year plan of the Blair ministry for the National Health Service (England). It combined a commitment to substantial investment with some quite radical changes. The most controversial aspect of the plan was the introduction of more private sector providers and a more competitive internal market. The plan, coming shortly after devolution, marked the beginning of divergence between the NHS in England and NHS Wales. NHS Scotland was legally distinct from England from the beginning of the NHS in 1948.
Exercise Cygnus was a three-day simulation exercise carried out by the UK Government in October 2016 to estimate the impact of a hypothetical H2N2 influenza pandemic on the United Kingdom. It aimed to identify strengths and weaknesses within the United Kingdom health system and emergency response chain by putting it under significant strain, providing insight on the country's resilience and any future ameliorations required. It was conducted by Public Health England representing the Department of Health and Social Care, as part of a project led by the "Emergency Preparedness, Resilience and Response Partnership Group". Twelve government departments across Scotland, Wales and Northern Ireland, as well as local resilience forums (LRFs) participated. More than 950 workers from those organisations, prisons and local or central government were involved during the three-day simulation, and their ability to cope under situations of high medical stress was tested.
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. It is an emergency care and treatment plan (ECTP) used in parts of the United Kingdom, in which personalized recommendations for future emergency clinical care and treatment are created through discussion between health care professionals and a person. These recommendations are then documented on a ReSPECT form.