50 percent of the conscious patients who die in the hospital have moderate-to-severe pain at least half the time.
Source - $28-million study, funded by the Robert Wood Johnson Foundation as reported in New England Journal June 27, 1996
"A substantial proportion of gravely ill hospitalized patients continue to receive inadequate pain relief and suffer from a burdensome and prolonged process of dying characterized by the use of invasive medical technology."
Source - New England Journal June 27, 1996
Television dramas makes it seem like CPR succeeds every time.
In reality, only 1% of people over the age of 70 survive a cardiac arrest when it occurs outside of a hospital.
Source - Annals of Internal Medicine 1989 August 1st
LANGUAGE IS VERY IMPORTANT
Every week I hear doctors and nurses ask patients/families if "they want everything done" - as if someone would be inclined to say they don't want everything done for a loved one.
False choices and poor word selection is an unfortunate, but common way to discuss end-of-life care.
Pain is not the only cause of suffering in terminal illness.
Shortness of breath, insomnia, agitation, depression, constipation, nausea, and emotional and spiritual distress all also major sources of suffering.
All of these issues need to be addressed.
When patients are so often asked, "DO YOU WANT EVERYTHING DONE?" it ignores the fact that hospice providers do a lot in treating patients.
That question makes patients feel as if very little will be done if they don't chose aggresive care in a terminal illness.
Withdrawing invasive treatment is not the same thing as withdrawing care.
- Source: Me (Gil Porat)
"The law permits, indeed requires, clinicians to forgo treatment at the request of a competent patient, even when the expressed purpose is to cause the patient's death."
Source - New England Journal Medicine December 11, 1997
The American healthcare system financially ruins many of its citizens who have a serious or terminal illness. Half of all bankruptcies in the United States are filed because of illness. Three quarters of those people actually HAVE health insurance.
Source - The Washington Post February 9, 2005 page A23
Refusing care is NOT the same as physician-assisted-suicide, where the goal is to speed up death.
If a patient decides to allow a disease process to progress without invasive treatments, that is ethical and legal in the United States.
Most patients that chose to end their life in Oregon with legalized Physician-Assisted-Suicide rarely cite pain as a top 3 reason for doing so.
The most cited reasons for participating are:
1) Loss of autonomy
2) Inability to participate in activities that make life enjoyable
3) Loss of dignity
Source - March 2007 Dept of Human Services Death With Dignity Act Annual Report
"Many in their 80s and 90s — and their boomer children — want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients — the elderly with chronic illnesses — are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age."
Source - N.Y. Times on May 5, 2008 - Article written by Jane Gross
"The largest study of matched patients who received hospice and no chemotherapy vs those who did not receive hospice care but had chemotherapy showed that survival was significantly longer for hospice patients with lung cancer and pancreatic cancer, marginally longer for colon cancer, but no different with breast and prostate cancer. The authors concluded that this was consistent with chemotherapy not prolonging and possibly shortening life for those eligible for hospice."
Source: Journal of the American Medical Association on June 11, 2008 page 2669
"Recent surveys have shown that most cancer patients in the U.S. express a prefernece to die at home. Despite this, about 75% of Americans with chronic illnesses die in a hospital or nursing home setting, although there are large regional differences."
Quote Source: BMJ Group - Spring 2008 Report pages 7-8. They used the following studies for the data:
Cancer Nursing 2003;26:245-251 and Gerontologist 2001;41:123-128 and Medical Care Research and Review 2007;64:351-378
In advanced cancer, about 70% of patients have little or no desire to eat. Treatments such as chemotherapy can also worsen nausea and make it painful to swallow because of mucous membrane breakdown in the mouth and throat (called mucositis).
Weight loss in cancer occurs not only because of decreased nutrition intake. Cancer is a disease of growing tumors that use energy and nutrition (known as a catabolic state) with resulting loss of muscle mass and fat.
Journal of Clinical Oncology 2005;23:8500-8511
Terminally ill patients with weight loss frequently concern families and doctors. It is a very appropriate concern since weight loss in the terminally ill is indeed a poor prognostic factor.
As a result, doctors will frequently prescribe a medication call Megace (megestrol) to increase appetite.
While Megace may temporarily increase weight, the evidence it prolongs survival is poor. In fact, a study of 2,127 nursing home patients with weight loss showed that those recieving Megace died at an average of 24 months while those not recieving Megace died at an average of 31 months.
This is another example where the intention to help is admirable, but the results are hurtful. Is this yet another example of an other face of murder?
An all too common problem in treating the terminally ill.
The American Journal of Geriatric Pharmacotherapy 2007;5:137-146 A retrospective study of the association between megestrol acetate administration and mortality among nursing home residents with clinically significant weight loss
"Hospital palliative care programs have been shown to improve physical and psychological symptom management, caregiver well-being, and family satisfaction..."
Archives of Internal Medicine page 1783 on Sept 8, 2008.
"Five percent of Medicare enrollees with the most serious illness account for over 43% of Medicare expenditures.
Approximately 60% of total Medicare health expenditures are for hospital care.
Hospital palliative care consultation teams are associated with significant hospital cost savings."
Archives of Internal Medicine pages 1789 and 1783 on Sept 8, 2008.
Family members want straight talk about poor patient prognosis.
Researchers conducted face-to-face interviews with family members of seriously ill patients to determine their opinions about balancing hope and telling the truth about a poor prognosis. Nearly all of the surrogates said that withholding bad news was not acceptable. They felt that knowing the truth was important because it gave them an opportunity to prepare emotionally and practically for a loved one's death. "Overall, 93% of surrogates felt that avoiding discussions about prognosis is an unacceptable way to maintain hope."
Annals of Internal Medicine December 16, 2008
When you need help with estimating survival time, doctors with palliative care experience can be an important resource. "Their new perspective can be useful because prognostic accuracy declines the longer the physician has known the patient."
Journal of American Medical Association - Feb 11th, 2009 page 654
A study of nursing home residents who began dialysis for kidney failure showed that outcomes for that population was very poor. "Within the first year after the initiation of dialysis, 58% had died, 29% had a decrease in functional status, and functional status had been maintained in only 13%. The high mortality rate in this population undergoing dialysys resembles a group of patients with incurable cancer."
New England Journal of Medicine Oct 15, 2009 page 1597
"People may think that the more money spent on their healthcare, the better care and quality of life purchased. At the end of life, it doesn't work that way. We found that most of the costs of end-of-life care pay for burdensome, non-curative care that offers no substantial survival advantage."
Holly G. Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute at Harvard Medical School.
Metastatic non-small cell lung cancer is THE leading cause of death from cancer worldwide. Data indicates that patients getting earlier palliative care and less aggressive treatment actually live 2.7 months longer, have a better quality of life, and mood.
New England Journal of Medicine Aug 19, 2010 pages 733-742
"Researchers have found that family members are less likely to experience prolonged depression and grief when their loved ones are spared grotesque medical interventions and receive only comfort care at the end of their lives."
The New York Times June 7, 2011
"The most comprehensive examination of operations performed on Medicare recipients in the final year of life found that nationally in 2008, nearly one recipient in three had surgery in the last year of life. Nearly one in five had surgery in the last month of life. Nearly one in 10 had surgery in the last week of life."
The New York Times October 5, 2011
"Patients dying with dementia who received hospice care have better symptom management fewer terminal hospitalizations, and greater family satisfaction with care than those not receiving hospice care."
Annals of Internal Medicine - January 3, 2012 page 47
"Patients without decision-making capacity have the same rights concerning life-sustaining treatment decisions as mentally competent patients. Treatment should conform to what the patient would want on the basis of written or oral advance care planning. If these preferences are not known, care decisions should be based on the best evidence of what the patient would have chosen based on the patient's values, previous choices, and beliefs (substituted judgments) or, failing that, on the best interests of the patient."
Annals of Internal Medicine - January 3, 2012 page 83
ACP Ethics Manual
"Many physicians avoid End-of-Life (EOL) care discussions until death is imminent. This late timing may be a manifestation of avoidance.
Most such discussions occurred in the inpatient hospital setting. This finding suggests that acute medical deterioration, and not the diagnosis of incurable cancer, triggers physicians to talk about EOL care.
The literature has also shown that physicians who have close long-term relationships with patients often wish to avoid EOL care discussions."
Annals of Internal Medicine - February 7, 2012 page 209
"A study found that nearly a quarter of the time, patients and physicians who had engaged in an end-of-life discussion had different interpretations of the agreed-on conclusions regarding the direction of care."
New England Journal of Medicine May 3, 2012 page 1656
"Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences. Physicians may be able to improve patients' understanding, but this may come at the cost of patients' satisfaction with them. (Funded by the National Cancer Institute and others.)"
"Patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy."
New England Journal of Medicine - October 25, 2012 quoted from a study titled: Patients' Expectations about Effects of Chemotherapy for Advanced Cancer
"Physicians and nurses need to be measured in offering hope to patients and families. Hope is a powerful ally in fighting serious disease and terminal illness, but when false hope is tied to expectations for miracles, then hope is converted to an expectation of a positive outcome when none is possible. Miracles happen, but expectations for them ought not be the building blocks for comforting patients and families. Short-term goals and little victories are a much more sound foundation for hope."
Arthur Caplan, PhD
Division of Medical Ethics at NYU
Mayo Clinic Proceedings November 2012 on page 1041
"Patients with advanced illness receiving home palliative services have greater odds of dying at home and experience lower symptom burden compared with usual care."
Journal of American Medical Association. March 12, 2014 page 1060
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The purpose of writing THE OTHER FACE OF MURDER was to address important end-of-life topics in an entertaining manner.
Despite a desire to keep the reader laughing, every attempt was made to avoid degrading the serious subject matter.
The factual information below is meant to further educate and change misperceptions. My intention is NOT to take away hope and a positive attitude. A healthy mind-body connection is essential in coping with all illness, especially an illness that may end life.
However, selling FALSE-hope and pretending cure is possible when it is not (a denial attitude a lot of doctors and families have) is something I have also seen cause enormous suffering. Therefore, there is a need for further education.
Please email me to discuss the book, end-of-life care, or any other topic at email@example.com - thanks!