Gaps at end of life

***Medicine shift the focus During the second half of the 20th century.
***The science, technology, and communication has shifted the values and focus
*** We started denying death-denying, *valuing : productivity, youth; independence. *Devaluing: age, interdependency, non-productivity,
*** “Many physicians and health care workers have come to believe that they have failed if they do not save their patients from death.
***End of life in America today: *< 10% die suddenly of a myocardial infarction, an accident, or another unexpected event *90% experience a protracted life- threatening illness, steady course and a relatively short “terminal” phase, eg, cancer or a slow decline punctuated by periodic crises, eg, congestive heart failure, cancer
***Sudden death from an unexpected cause : example……
***Advanced life-threatening illness with a steady decline and a short terminal ….. ***inpatients averaged 13.5 symptoms while outpatients averaged 9.7 symptoms. ***”For many people, the loss of their independence is devastating and a source of considerable suffering. afraid of being a burden to their family and friends. Social isolation”
***”Americans live alone, or with only one other adult. parents & other relatives—often live far away and have “lives of their own.” on the other hand the caregiving are frail and weak, often women, women, who may be unskilled and without the resources. Financial pressures have a significant impact on the family, 20% quit work, 31% lost most of their savings, 40% of families became impoverished.
***”In some patients distress may be so significant if suffering is not relieved that goals may become destructive as they plan suicide or seek assistance for ….”
***90% strongly expressed desire to die at home, the pattern of death in the United States is paradoxical. 1980 only 20% died in their own homes
***HOSPICE started in United States during the late 1970s. received a boost in 1982 when the federal government began reimbursing hospice care for Medicare beneficiaries with a prognosis of less than 6 months. Of those patients dying of cancer in the US, only about 40% are ever referred to a hospice agency.
*** There is a large gap between the way Americans currently live with life-threatening illness and the way they would like to experience the end of their lives at home becomes apparent.
***to fight death “the enemy” at all cost, the majority of Americans (74%) expect their physician to be confident and competent to provide them with care when they do develop a life- threatening illness.

“They said there was ‘nothing to do’ for this young man who was ‘end stage.’ He

was restless and short of breath; he couldn’t talk and

looked terrified. I didn’t know what to do, so I patted him on the shoulder, said something inane, and left. At 7 am he died. The memory haunts me. I failed to care for him properly because I was ignorant.” in 1997–1998, only 4 of 126 US medical schools required separate course in the care of the dying.”

*** neither the public nor health care providers acknowledge that end-of-life care is important. Frequently, It is often introduced too late to be effective, and funding is frequently inadequate to deliver quality palliative care.
*** Fears of addiction, exaggerated risks of adverse effects, and restrictive legislation have resulted in inadequate control of symptoms.

***Discomfort with communicating bad news and prognosis, lack of skill to assist patient & families to negotiate clear goals of care and treatment priorities, and lack of understanding of patients’ rights to decline or withdraw treatment have led to frequent misunderstanding and excessive futile intervention.

***Personal fears, fantasies, worries, and lack of confidence have prompted many physicians to avoid dealing with patients who are dying.
***EPEC Project—“Education for Physicians on End-of-life Care.” EPEC is intended to help physicians take care of their portion of the responsibility to develop good end-of-life care.”

***While the a person’s life can be one of the most important times in their life. While the The end of a person’s life can be one of the most important times in that life. While the way we die has changed considerably during the 20th century, neither our society nor modern medicine has valued end-of-life care. Physicians are not sufficiently trained to be competent or confident in it. The EPEC curriculum proposes to equip physicians with knowledge, skills, and attitudes that can be tailored to their unique practice settings. The ultimate goal: to relieve suffering and improve the quality of the lives of all Americans who are living with, or dying of, life-threatening illnesses.

***summary: 1. Historically, up until the development of antibiotics in the mid-20th century, people expected to die quickly, often of infectious diseases or accidents. During the second half of the 20th century expectations changed. While our health care system and biomedical science enterprise has learned to prevent or cure a few illnesses, it has primarily learned to prolong the experience of living with chronic illness and the process of dying. 2. Less than 10% of Americans die suddenly. 3. Several studies indicate that most patients and families who are living with a life- threatening illness can expect to experience multiple physical symptoms along with psychological, social, spiritual, and practical issues. While some of these symptoms are related to the primary illness, some are adverse effects of medications or therapy, and others result from intercurrent illness. 4. Ninety percent of the respondents to a Gallup survey in 1996 desire to die at home, yet nearly 80% currently die in institutions. 5. The majority of Americans (74%) expect their physician to be confident and competent to provide them with care when they do develop a life-threatening illness. 6. Many physicians and health care workers believe they have failed and experience a sense of shame if they do not save their patients from death. 7. End-of-life care is commonly introduced too late to be fully effective. 38.5% of dying patients were with hospice. Patients generally do not spend enough time in these programs to experience all of the potential benefits; median length of stay is less than 30 days. 8. Until recently, formal education in end-of-life care has been absent from medical school and residency training.”

Summarized by Dr. Kazmi, MD 9-23-2011