End of Life and Palliative Care Information
Updated/Revised Date: 2022-04-13
Author: Disabled World | Contact: Disabled World (Disabled-World.com)
Additional References: End-of-Life - Palliative Care Publications
Synopsis: Information relating to end of life and palliative care for terminally ill patients, hospital staff and medical facility personnel. Every medical study ever conducted has concluded that 100 percent of all people will eventually die. Current guidelines list 11 key elements for health care providers to discuss regarding end-of-life care. The focus on a patient's quality of life has increased greatly during the past twenty years, and it has been noted that with each passing year, the newly born live about three months longer than those born the prior year. 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.
Every medical study ever conducted has concluded that 100 percent of all people will eventually die. Before the development of antibiotics and other medical advances, people often died quickly, usually of infectious diseases or accidents. Today, the vast majority of people have a more protracted experience with death. Families and terminally ill patients, whether young or old, have a broad range of physical, psychological, social, spiritual, and practical needs.
The focus on a patient's quality of life has increased greatly during the past twenty years, and it has been noted that with each passing year, the newly born live about three months longer than those born the prior year. 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 concept of a dedicated health care team that is entirely geared toward palliative treatment: a palliative-care team.
What is the Difference Between Palliative Care and End of Life Care?
End-of-life care is care occurring in the last part of a patient’s life, typically in the last few months, depending on the underlying diagnosis and clinical course and also includes planning for end-of-life care. Palliative care includes end-of-life care, but also entails much more.
Palliative care is care that focuses on improving the quality of life and quality of care for patients with life-threatening or life-limiting illness and their families through the prevention and relief of suffering, communication about goals of care, and early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Both palliative care and end of life care are defined in more detail below.
Definition: An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering utilizing early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life. Physicians sometimes use the term palliative care in a sense meaning palliative therapies without curative intent, when no cure can be expected - as often happens in late-stage cancers.
The term "palliative care" is increasingly used regarding diseases apart from cancer such as chronic, progressive pulmonary disorders, renal disease, chronic heart failure, HIV/AIDS, and progressive neurological conditions.
In the United States, hospice services and palliative care programs share similar goals of providing symptom relief and pain management. Non-hospice palliative care is appropriate for anyone with a serious, complex illness, whether they are expected to recover fully, to live with chronic illness for an extended time, or to experience disease progression. In contrast, although hospice care is also palliative, the term hospice applies to care administered in patients with a prognosis of 6 months or less to live.
Palliative care is a specialized area of healthcare that focuses on relieving and preventing the suffering of patients. Unlike hospice care, palliative medicine is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses and those living with chronic diseases, as well as patients who are nearing the end of life. Palliative medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians, nurses, chaplains, social workers, psychologists, and other allied health professionals in formulating a plan of care to relieve suffering in all areas of a patient's life.
While palliative care may seem to offer a broad range of services, the goals of palliative treatment are concrete: relief from suffering, treatment of pain and other distressing symptoms, psychological and spiritual care, a support system to help the individual live as actively as possible, and a support system to sustain and rehabilitate the individual's family.
- Intends neither to hasten nor postpone death;
- Affirms life and regards dying as a normal process;
- Provides relief from pain and other distressing symptoms;
- Integrates the psychological and spiritual aspects of patient care;
- Offers a support system to help patients live as actively as possible until death;
- Will enhance quality of life, and may also positively influence the course of illness;
- Offers a support system to help the family cope during the patient's illness and in their bereavement;
- Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
- Is applicable early during illness, with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
(WHO - www.who.int/cancer/palliative/definition/en/)
End of Life Care
Definition: In medicine, nursing and the allied health professions, end-of-life care refers to health care, not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal illness or terminal condition that has become advanced, progressive and incurable.
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 and bioethics. In addition, end-of-life treatments are subject to considerations of patient autonomy.
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. Last year, U.S. Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients' lives. That's more than the budget for the Department of Homeland Security, or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Many Americans spend their last days in an intensive care unit, subjected to uncomfortable machines or surgeries to prolong their lives at enormous cost.
End of Life Discussions
What are the most important things for health care teams to talk about in end-of-life discussions with patients in hospital and their families?
A new study published in CMAJ (Canadian Medical Association Journal) asked older patients and their families for their top priorities and found gaps between what patients would like and the care they actually receive. "Our findings could be used to identify critical opportunities to improve end-of-life communication and decision-making in the hospital setting," states Dr. John You, lead author of the study and associate professor of medicine, and clinical epidemiology and biostatistics at McMaster University, and a staff physician at Hamilton Health Sciences, Hamilton, Ontario.
Current guidelines list 11 key elements for health care providers to discuss regarding end-of-life care, although these are based mainly on expert opinion and not on patient and family feedback. A team of researchers with backgrounds in general internal medicine, critical care medicine and palliative care surveyed 233 older adults in hospital with serious illnesses and 205 family members about the importance of the 11 guideline-recommended elements of end-of-life care. The patients had been admitted to 9 hospitals in British Columbia, Alberta, Ontario, and Quebec.
Things to Discuss About End of Life:
- Patient values
- Fears or concerns
- Prognosis of illness
- Additional questions regarding care
- Preferences of care in event of life-threatening illness
"However, we found that these elements are infrequently discussed and that concordance between preferred and prescribed goals of care is low," state the authors. Patients reported that of the 11 key elements, an average of only 1.4 had been discussed with the health care team within the first few days after admission to hospital. The more elements of care that physicians discussed with patients, the higher the satisfaction patients and their families reported about care received.
"Our results suggest that concordance between preferences and prescribed goals of care, as well as satisfaction with end-of-life communication, increase with the number of elements discussed," write the authors. They hope that their findings will help improve end-of-life care for patients in hospital. The authors have previously published a related guide in CMAJ called "Just Ask" to help physicians initiate end-of-life discussions with patients and their families.
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