End-of-life (medical treatment)
Encyclopedia
In medicine
, end-of-life care refers to medical care not only of patients in the final hours or days of their lives, but more broadly, medical care of all those with a terminal illness
or terminal condition that has become advanced, progressive and incurable.
Regarding cancer care the United States National Cancer Institute
writes:
End-of-life care requires a range of decisions, including questions of palliative care
, patients' right to self-determination (of treatment, life), medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life often touches upon rationing
and the allocation of resources in hospitals and national medical systems. Such decisions are informed both by technical, medical considerations, economic factors as well as bioethics
. In addition, end-of-life treatments are subject to considerations of patient autonomy
. "Ultimately, it is still up to patients and their families to determine when to pursue aggressive treatment or withdraw life support."
“I think people think DNR means give up. They think DNR and hospice means you’re quitting. It’s more about accepting and embracing the next phase of life, even if it’s death. DNR does not mean do not treat and it does not mean do not care. It just means do not resuscitate by giving CPR, electric shocks or medications to restart the heart. If things go badly, there is a role in certain situations for letting the natural breakdown of the body occur," says Dr. Lauren Jody Van Scoy, a board-certified internist who has spent hundreds of hours in the intensive care unit, where she has witnessed the manner in which many critically ill patients choose to die, and how sometimes such a decision is mired in upheaval when family members are forced to confront the inevitable.
In 2006 just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" and followed a period of chronic illnessSee also End of life care strategy, UK Department of Health, July 2008, paragraphs 1.1 and 1.7-1.14 (pages 26-27); and End of Life care, UK National Audit Office
Comptroller and Auditor General
's report, 26 November 2008, paragraphs 2.2-2.5 (page 15) – for example heart disease
, cancer
, stroke
or dementia
. In all, 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly people over the age of 85), and about 4% in hospices. However a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs which required them to be there.
In 2010 a survey by the Economist Intelligence Unit
commissioned by the Lien Foundation ranked the UK top out of forty countries globally for end of life care.
advises that the presence of some of the following signs may indicate that death is approaching:
Typical care plans, such as those based on the Liverpool Care Pathway for dying patients, will pre-authorise staff to give subcutaneous injection
s to address such symptoms as soon as they are needed, without needing to take time to seek further authorisation. Such injections are usually the preferred means of delivery, as it may become difficult for patients to swallow or to take pills orally. If repeated medication is needed, a syringe driver
(called an infusion pump
in the US) is likely to be used, to deliver a steady low dose of medication.
Other symptoms which may occur, and may be mitigable to some extent, include cough
, fatigue, fever
, and in some cases bleeding
.
Medicine
Medicine is the science and art of healing. It encompasses a variety of health care practices evolved to maintain and restore health by the prevention and treatment of illness....
, end-of-life care refers to medical care not only of patients in the final hours or days of their lives, but more broadly, medical care of all those with a terminal illness
Terminal illness
Terminal illness is a medical term popularized in the 20th century to describe a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as...
or terminal condition that has become advanced, progressive and incurable.
Regarding cancer care the United States National Cancer Institute
National Cancer Institute
The National Cancer Institute is part of the National Institutes of Health , which is one of 11 agencies that are part of the U.S. Department of Health and Human Services. The NCI coordinates the U.S...
writes:
When a patient's health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the patient's care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.
The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient's and family's questions and concerns about the end of life should be discussed with the health care team as they arise...
Patients and their family members often want to know how long a person is expected to live. This is a hard question to answer. Factors such as where the cancer is located and whether the patient has other illnesses can affect what will happen. Although doctors may be able to make an estimate based on what they know about the patient, they might be hesitant to do so. Doctors may be concerned about over- or under-estimating the patient's life span. They also might be fearful of instilling false hope or destroying a person's hope.
End-of-life care requires a range of decisions, including questions of palliative care
Palliative care
Palliative care is a specialized area of healthcare that focuses on relieving and preventing the suffering of patients...
, patients' right to self-determination (of treatment, life), medical experimentation, the ethics and efficacy of extraordinary or hazardous medical interventions, and the ethics and efficacy even of continued routine medical interventions. In addition, end-of-life often touches upon rationing
Rationing
Rationing is the controlled distribution of scarce resources, goods, or services. Rationing controls the size of the ration, one's allotted portion of the resources being distributed on a particular day or at a particular time.- In economics :...
and the allocation of resources in hospitals and national medical systems. Such decisions are informed both by technical, medical considerations, economic factors as well as bioethics
Bioethics
Bioethics is the study of controversial ethics brought about by advances in biology and medicine. Bioethicists are concerned with the ethical questions that arise in the relationships among life sciences, biotechnology, medicine, politics, law, and philosophy....
. In addition, end-of-life treatments are subject to considerations of patient autonomy
Medical ethics
Medical ethics is a system of moral principles that apply values and judgments to the practice of medicine. As a scholarly discipline, medical ethics encompasses its practical application in clinical settings as well as work on its history, philosophy, theology, and sociology.-History:Historically,...
. "Ultimately, it is still up to patients and their families to determine when to pursue aggressive treatment or withdraw life support."
“I think people think DNR means give up. They think DNR and hospice means you’re quitting. It’s more about accepting and embracing the next phase of life, even if it’s death. DNR does not mean do not treat and it does not mean do not care. It just means do not resuscitate by giving CPR, electric shocks or medications to restart the heart. If things go badly, there is a role in certain situations for letting the natural breakdown of the body occur," says Dr. Lauren Jody Van Scoy, a board-certified internist who has spent hundreds of hours in the intensive care unit, where she has witnessed the manner in which many critically ill patients choose to die, and how sometimes such a decision is mired in upheaval when family members are forced to confront the inevitable.
USA
Estimates show that about 27% of Medicare's annual $327 billion budget ($88 billion) goes to care for patients in their final year of life.UK
End of life care has been identified by the UK Department of Health as an area where quality of care has previously been "very variable", and which has not had a high profile in the NHS and social care. To address this, a national end of life care programme was established in 2004 to identify and propagate best practice, and a national strategy document published in 2008. The Scottish Government has also been published a national strategy.In 2006 just over half a million people died in England, about 99% of them adults over the age of 18, and almost two-thirds adults over the age of 75. About three-quarters of deaths could be considered "predictable" and followed a period of chronic illnessSee also End of life care strategy, UK Department of Health, July 2008, paragraphs 1.1 and 1.7-1.14 (pages 26-27); and End of Life care, UK National Audit Office
National Audit Office (United Kingdom)
The National Audit Office is an independent Parliamentary body in the United Kingdom which is responsible for auditing central government departments, government agencies and non-departmental public bodies...
Comptroller and Auditor General
Comptroller and Auditor General
Comptroller and auditor-general is the abbreviated title of a government official in a number of jurisdictions, including the UK, the Republic of Ireland, India, and China....
's report, 26 November 2008, paragraphs 2.2-2.5 (page 15) – for example heart disease
Heart disease
Heart disease, cardiac disease or cardiopathy is an umbrella term for a variety of diseases affecting the heart. , it is the leading cause of death in the United States, England, Canada and Wales, accounting for 25.4% of the total deaths in the United States.-Types:-Coronary heart disease:Coronary...
, cancer
Cancer
Cancer , known medically as a malignant neoplasm, is a large group of different diseases, all involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body. The cancer may also spread to more distant parts of the...
, stroke
Stroke
A stroke, previously known medically as a cerebrovascular accident , is the rapidly developing loss of brain function due to disturbance in the blood supply to the brain. This can be due to ischemia caused by blockage , or a hemorrhage...
or dementia
Dementia
Dementia is a serious loss of cognitive ability in a previously unimpaired person, beyond what might be expected from normal aging...
. In all, 58% of deaths occurred in an NHS hospital, 18% at home, 17% in residential care homes (most commonly people over the age of 85), and about 4% in hospices. However a majority of people would prefer to die at home or in a hospice, and according to one survey less than 5% would rather die in hospital. A key aim of the strategy therefore is to reduce the needs for dying patients to have to go to hospital and/or to have to stay there; and to improve provision for support and palliative care in the community to make this possible. One study estimated that 40% of the patients who had died in hospital had not had medical needs which required them to be there.
In 2010 a survey by the Economist Intelligence Unit
Economist Intelligence Unit
The Economist Intelligence Unit is part of the Economist Group.It is a research and advisory company providing country, industry and management analysis worldwide and incorporates the former Business International Corporation, a U.S. company acquired by the parent organization in 1986...
commissioned by the Lien Foundation ranked the UK top out of forty countries globally for end of life care.
Signs that death may be near
The U.S. Government National Cancer InstituteNational Cancer Institute
The National Cancer Institute is part of the National Institutes of Health , which is one of 11 agencies that are part of the U.S. Department of Health and Human Services. The NCI coordinates the U.S...
advises that the presence of some of the following signs may indicate that death is approaching:
- Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient's metabolism).
- Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient's metabolism).
- Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying).
- Decreased need for food and fluids, and loss of appetite (caused by the body's need to conserve energy and its decreasing ability to use food and fluids properly).
- Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).
- Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake).
- Skin becoming cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities).
- Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs).
- Turning of the head toward a light source (caused by decreasing vision).
- Increased difficulty controlling pain (caused by progression of the disease).
- Involuntary movements (called myoclonusMyoclonusMyoclonus is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign and, generally, is not a diagnosis of a disease. Brief twitches are perfectly normal. The myoclonic twitches are usually caused by sudden muscle contractions; they also can result from brief...
), changes in heart rateHeart rateHeart rate is the number of heartbeats per unit of time, typically expressed as beats per minute . Heart rate can vary as the body's need to absorb oxygen and excrete carbon dioxide changes, such as during exercise or sleep....
, and loss of reflexReflexA reflex action, also known as a reflex, is an involuntary and nearly instantaneous movement in response to a stimulus. A true reflex is a behavior which is mediated via the reflex arc; this does not apply to casual uses of the term 'reflex'.-See also:...
es in the legs and arms are additional signs that the end of life is near.
Symptom management
The following are some of the most common potential problems which can arise in the last days and hours of a patient's life:- PainPainPain is an unpleasant sensation often caused by intense or damaging stimuli such as stubbing a toe, burning a finger, putting iodine on a cut, and bumping the "funny bone."...
-Suffering from uncontrolled pain is a significant fear of those at end of life.- Typically controlled using morphineMorphineMorphine is a potent opiate analgesic medication and is considered to be the prototypical opioid. It was first isolated in 1804 by Friedrich Sertürner, first distributed by same in 1817, and first commercially sold by Merck in 1827, which at the time was a single small chemists' shop. It was more...
or diamorphine; or other opioids.
- Typically controlled using morphine
- Agitation
- DeliriumDeliriumDelirium or acute confusional state is a common and severe neuropsychiatric syndrome with core features of acute onset and fluctuating course, attentional deficits and generalized severe disorganization of behavior...
, terminal anguish, restlessness (e.g. thrashing, plucking, or twitching). Typically controlled using midazolamMidazolamMidazolam is a short-acting drug in the benzodiazepine class developed by Hoffmann-La Roche in the 1970s. The drug is used for treatment of acute seizures, moderate to severe insomnia, and for inducing sedation and amnesia before medical procedures. It possesses profoundly potent anxiolytic,...
, or other benzodiazepines. Symptoms may also sometimes be alleviated by rehydration, which may reduce the effects of some toxic drug metabolites.
- Delirium
- Respiratory Tract Secretions
- Saliva and other fluids can accumulate in the oropharynxOropharynxThe Oropharynx reaches from the Uvula to the level of the hyoid bone.It opens anteriorly, through the isthmus faucium, into the mouth, while in its lateral wall, between the two palatine arches, is the palatine tonsil....
and upper airways when patients become too weak to clear their throatThroatIn vertebrate anatomy, the throat is the anterior part of the neck, in front of the vertebral column. It consists of the pharynx and larynx...
s, leading to a characteristic gurgling or rattle-like sound ("death rattleDeath rattleA death rattle is a medical term that describes the sound produced by someone who is near death when saliva accumulates in the throat. Those who are dying may lose their ability to swallow, resulting in such an accumulation...
"). Whilst apparently not painful for the patient, the association of the symptom with impending death can create fear and uncertainty for those at the bedside. The secretions may be controlled using drugs such as scopolamineScopolamineScopolamine, also known as levo-duboisine, and hyoscine, is a tropane alkaloid drug with muscarinic antagonist effects. It is among the secondary metabolites of plants from Solanaceae family of plants, such as henbane, jimson weed and Angel's Trumpets , and corkwood...
(hyoscine), glycopyrronium, or atropineAtropineAtropine is a naturally occurring tropane alkaloid extracted from deadly nightshade , Jimson weed , mandrake and other plants of the family Solanaceae. It is a secondary metabolite of these plants and serves as a drug with a wide variety of effects...
. Rattle may not be controllable if caused by deeper fluid accumulation in the bronchi or the lungs, such as occurs with pneumonia or some tumours.
- Saliva and other fluids can accumulate in the oropharynx
- NauseaNauseaNausea , is a sensation of unease and discomfort in the upper stomach with an involuntary urge to vomit. It often, but not always, precedes vomiting...
and vomiting- Typically controlled using cyclizineCyclizineCyclizine is an antihistamine drug used to treat nausea, vomiting and dizziness associated with motion sickness, vertigo and post-operatively following administration of general anaesthesia and opioids.-Indications:...
; or other anti-emetics.
- Typically controlled using cyclizine
- Dyspnoea (breathlessness)
- Typically controlled using morphineMorphineMorphine is a potent opiate analgesic medication and is considered to be the prototypical opioid. It was first isolated in 1804 by Friedrich Sertürner, first distributed by same in 1817, and first commercially sold by Merck in 1827, which at the time was a single small chemists' shop. It was more...
or diamorphine
- Typically controlled using morphine
Typical care plans, such as those based on the Liverpool Care Pathway for dying patients, will pre-authorise staff to give subcutaneous injection
Subcutaneous injection
A subcutaneous injection is administered as a bolus into the subcutis, the layer of skin directly below the dermis and epidermis, collectively referred to as the...
s to address such symptoms as soon as they are needed, without needing to take time to seek further authorisation. Such injections are usually the preferred means of delivery, as it may become difficult for patients to swallow or to take pills orally. If repeated medication is needed, a syringe driver
Syringe driver
A syringe driver or syringe pump is a small infusion pump , used to gradually administer small amounts of fluid to a patient or for use in chemical and biomedical research....
(called an infusion pump
Infusion pump
An infusion pump infuses fluids, medication or nutrients into a patient's circulatory system. It is generally used intravenously, although subcutaneous, arterial and epidural infusions are occasionally used....
in the US) is likely to be used, to deliver a steady low dose of medication.
Other symptoms which may occur, and may be mitigable to some extent, include cough
Cough
A cough is a sudden and often repetitively occurring reflex which helps to clear the large breathing passages from secretions, irritants, foreign particles and microbes...
, fatigue, fever
Fever
Fever is a common medical sign characterized by an elevation of temperature above the normal range of due to an increase in the body temperature regulatory set-point. This increase in set-point triggers increased muscle tone and shivering.As a person's temperature increases, there is, in...
, and in some cases bleeding
Bleeding
Bleeding, technically known as hemorrhaging or haemorrhaging is the loss of blood or blood escape from the circulatory system...
.
See also
- Advance health care directive
- Medical ethicsMedical ethicsMedical ethics is a system of moral principles that apply values and judgments to the practice of medicine. As a scholarly discipline, medical ethics encompasses its practical application in clinical settings as well as work on its history, philosophy, theology, and sociology.-History:Historically,...
- MedicineMedicineMedicine is the science and art of healing. It encompasses a variety of health care practices evolved to maintain and restore health by the prevention and treatment of illness....
- Physician assisted suicide
- Robert MartensenRobert Martensen-Career and publications:Martensen has worked as physician in emergency room and intensive care unit settings and as a professor at Harvard Medical School and Tulane University, teaching bioethics and medical history...
External links
- End of Life Issues. MedlinePlusMedlinePlusMedlinePlus is a free Web site that provides consumer health information for patients, families, and Health care providers. The site brings together information from the United States National Library of Medicine, the National Institutes of Health , other U.S. government agencies, and...
. - EndLink - Resource for End of Life Care Education, Robert H. Lurie Comprehensive Cancer Center, Northwestern University
- End of life care, NHS Choices
- John Ellershaw, Chris Ward (2003), Care of the dying patient: the last hours or days of life, British Medical JournalBritish Medical JournalBMJ is a partially open-access peer-reviewed medical journal. Originally called the British Medical Journal, the title was officially shortened to BMJ in 1988. The journal is published by the BMJ Group, a wholly owned subsidiary of the British Medical Association...
, 326, 30-34 - Polly Mazanec, Julia Bartel (2002), Symptoms and Symptom Management, in Robert Kastenbaum (ed), Macmillan Encyclopedia of Death and Dying. New York: Macmillan Reference USA. ISBN 002865689X
- End of Life: The Facts, Marie Curie Cancer Care
- End of life care in adults, Map of Medicine, updated 29 October 2010
- End-of-Life Decisions from the Institute for Good Medicine at the Pennsylvania Medical Society
- Survivorship A to Z: End-Of-Life
- Before I Die: Medical Care and Personal Choices. Produced by Thirteen/WNETWNETWNET, channel 13 is a non-commercial educational public television station licensed to Newark, New Jersey. With its signal covering the New York metropolitan area, WNET is a primary station of the Public Broadcasting Service and a primary provider of PBS programming...
, premiered on Public Broadcasting ServicePublic Broadcasting ServiceThe Public Broadcasting Service is an American non-profit public broadcasting television network with 354 member TV stations in the United States which hold collective ownership. Its headquarters is in Arlington, Virginia....
April 22, 1997. The program explores the medical, ethical, and social issues surrounding end-of-life care in America today. - Palliative Care Policy Center (PCPC), formerly Center for Palliative Care Studies. Includes RANDRANDRAND Corporation is a nonprofit global policy think tank first formed to offer research and analysis to the United States armed forces by Douglas Aircraft Company. It is currently financed by the U.S. government and private endowment, corporations including the healthcare industry, universities...
Health white paperWhite paperA white paper is an authoritative report or guide that helps solve a problem. White papers are used to educate readers and help people make decisions, and are often requested and used in politics, policy, business, and technical fields. In commercial use, the term has also come to refer to...
on Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. plus other resources.