Treatment Concerns – Definitions / Living Wills / Palliative Care / Terminal or Excessive Sedation / Organ Donation / DCD or NHBD / Hospice / POLST / DNR

DCD – Donors after Circulatory Death
NHBD – Non Heart Beating Donation
POLST – Physician Orders for Life Sustaining Treatment
DNR – Do Not Resuscitate

Study: Therapy Helps Stroke Patients Speak (6/05)

“Intensive therapy with people who suffered a stroke years earlier seems to improve their speaking ability, a small study suggests, offering hope to stroke victims and their families… ‘Anything that sort of tests our old thinking, which is that you can’t get better after a year, I always think is exciting,’ said Dr. Marilyn Rymer [med dir, Saint Luke’s Mid America Brain and Stroke Institute, Kansas City, MO] who was not involved in the study. Researchers looked at 27 stroke survivors – 16 men and 11 women with an average age of 51 – who had suffered for about four years from varying degrees of aphasia, problems with speaking and comprehending words following a stroke. About 700,000 people each year experience a new or recurrent stroke in the United States. Signs of a stroke include a sudden loss of vision in one or both eyes, sudden loss of strength or sensation on one side of the body and slurred speech or a change in language. The patients in the study were given 30 hours of speech training – three hours a day over a period of 10 days. Before the training, the patients had trouble finding the right words or understanding what other people said. They improved right away after the training and that progress was maintained six months later. Lead author of the study, Marcus Meinzer of the Unversitat Konstanz in Konstanz, Germany, said that about 38 percent of stroke survivors have aphasia after a stroke on the left side of the brain. While there is often spontaneous improvement in patients during the first six months after a...

CMS Proposes First Medicare Standard Changes for Hospices Since 1983 (2005)

Hospices would have to meet standards for assessing patients at admission and tracking improvement or deterioration in patients’ health as a condition of Medicare participation, under a CMS proposal to be published in Friday’s Federal Register. The new standards would be the first changes to Medicare’s conditions of participation for hospices since the rules were created in 1983. The CMS proposal would replace a current quality-assurance requirement; drop a requirement that hospices staff a registered nurse at an inpatient facility 24 hours a day; and provide guidance to hospices on caring for nursing home residents. The agency will accept comments on the proposal through July 27. [Joseph Mantone, http://www.modernhealthcare.com/dailydose/2005-05-26_dailydose.html#ts5; N Valko RN; R....

How the Culture of Death Was Brought to American Medicine

You may be dismayed that the United States Supreme Court refused in March 2005 to take the case of Terri Schiavo and wonder how this came to be.  As with the abortion movement, this right-to-die movement is based on a false philosophy of choice and is riddled with misinformation and confusion.  LifeTree (www.lifetree.org/timeline.html) has researched the campaign which has been actively changing America’s view on hastening death in order to  inflict euthanasia on our land.   The Supreme Court’s decision in March did not just happen. Much money and time paved the way. This campaign has spent hundreds of millions of dollars to change a society’s morality and public policies.  It involves several non-profits, think tanks, and university chairs.  It continues to reach young doctors, lawyers, nurses, as well as legislators and the general public.  Mainstreaming the idea of hastening death by withdrawal of food and water is just one success of this end-of-life program.   This research is in the form of a timeline at: http://www.lifetree.org/timeline.html.  The chronology, long as it is, is still only an overview (about 27 printed pages) which explores the many links to primary sources which have been gathered into this unique work.     A brief overview of this chronology follows:  In retrospect, 1997 was a pivotal year. The Supreme Court vote to let the Florida court ruling stand in the Schiavo case can be linked to another Supreme Court action in 1997.    Although at the time pro-lifers claimed victory, the Supreme Court’s decision in Vacco v Quill gave a major impetus to the right-to-die movement.   The Court held that states could make their own laws relating to the...

End of Life Planning: Q & A with a Disabilities' Advocate

By Stephen Drake SPECIAL TO THE RENO GAZETTE-JOURNAL (Nevada)Research Analyst for “Not Dead Yet,” a national disabilities group 11/22/2003  1. Do you support advance directives? Why or why not? We support detailed advance directives in regard to people’s treatment preferences. In the current climate, we stress it’s probably more important to make it very clear what kind of medical treatment you do want, since the default assumption seems to be switching to that of non-treatment for incapacitated persons in the health care system. For example, the University of Pennsylvania Hospital has announced it will no longer admit people with a label of “persistent vegetative state” or “minimally conscious state” to Intensive Care unless they have an advanced directive saying that is what they would have wanted. 2. How could advance directives be abused? One of the greatest dangers is over-interpretation. Someone who states on a form they don’t want measures such as a ventilator or tube-feeding may be thinking in terms of not wanting these as a permanent measure. Regardless of what they might have meant, a directive that specifies neither of these measures can come into effect even if their use is expected to be short-term. It can even be true if there is a possibility that the individual might regain communication ability in the future. Another area of abuse stems from people’s “blind faith” in medical labeling. Most people are probably under the impression that a “vegetative state” is a simple diagnosis. In fact, several studies have indicated that the misdiagnosis rate of persistent vegetative state runs as high as 43 percent. An error rate like that...

Nutrition & Hydration – Rules to Know

Morality is a code of conduct which is followed by members of a civilized society. Here are some practical “rules” for making moral decisions regarding the provision or withdrawal of food and fluids, whether the patient is fed orally or through a tube: 1. While inserting a feeding tube may require surgery or other medical expertise, food and fluids themselves are not medical treatment because they do not cure; they sustain life.   2. Removing food and fluids from those able to eat and drink on their own or with the assistance of another person is never appropriate. 3. Tube-feeding persistently non-responsive patients is obligatory in most cases since it is beneficial and usually does not add a serious burden. 4. For terminally ill patients, the provision of food and fluids is generally obligatory (required because it is necessary and ordinary) care. 5. When death is so close that further nutrition and hydration will no longer sustain life, they may be discontinued if the patient is more comfortable without them. 6. It is most important to examine intent. Is the intention to hasten or cause death? Then the omission of food and fluids is inappropriate and morally unethical. [July/August 2002; reprinted in Illinois Nurses for Life...

Palliative Care Statement

Palliative care is aimed at the relief of suffering and improving the quality of life for persons who are living with or dying from advanced illness or are bereaved. It affirms life and regards dying as a normal process. It neither hastens nor postpones death. It provides relief from pain and other distressing symptoms. It integrates the psychological and spiritual aspects of patient care. It offers a support system to help patients live as actively as possible until death. It offers a support system to help the family cope during the patient’s illness and their own bereavement.   [Canadian Palliative Care Association  www.cpca.net;...

End of Life Care Decisions? What to Do?…Do No Harm

"The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him: their undue suspension could be real and properly so-called euthanasia." Decisions affecting treatment and care at the end of a person's life can present extraordinary difficulties for those involved. The moral responsibility of self-preservation obliges everyone to use the normal means the medicine can offer for preserving one's life. ~~~~~~~~~~~~~~~~~~~~~~ END OF LIFE WEBSITES Prenatal Partners For Life – support for parents of babies with severe problems www.prenatalpartnersforlife.org Chart of State Laws Regarding End Of Life Care http://www.nrlc.org/euthanasia/willtolive/mapgraphic.pdf The Will to Live Project http://www.nrlc.org/euthanasia/willtolive/index.html http://www.nrlc.org/euthanasia/willtolive/StatesList.html ~~~~~~~~~~~~~~~~~~~~~~~ The public recognition of issues about treatment and care at the end of life has made almost everyone aware, if not fearful, of the possibility of becoming dependent upon other people and technological help to sustain one's life when a life-threatening condition befalls oneself or a loved one. The impending sense of loss can become entwined with other emotions surrounding serious questions about appropriate care of the seriously ill or dying person. Since many families do not discuss these matters beforehand, decisions often have to be made when the result is a matter of life and death. There are many questions that could be clarified beforehand by a loving and frank discussion within the family. Many people make statements about not wanting to be "put on a tube" or "hooked up to a machine." They fear that their lives will be prolonged needlessly when there is no chance of getting better, an idea that has been planted...

Girl Fed Through Feeding Tube for 7 Years Now Eating Orally (2005)

Girl Fed Through Feeding Tube for 7 Years Now Eating Orally Comment: This story points out the inherent discrimination involved in the feeding tube issue. Obviously, the feeding tube was not considered extraordinary, risky “life support” for this little girl even though it was assumed at the time to be permanent. That’s because she had no cognitive disability, paralysis, etc. and that’s why cases like Terri Schiavo’s are about lethal discrimination against people with disabilities, not a refusal of unwanted medical treatment. [N. Valko RN] An eight-year-old girl who has been fed through a tube all her life is eating normally for the first time after doctors discovered that the rare nerve illness she was diagnosed with as a baby was just enlarged tonsils. Tilly Merrell was fed directly into her stomach after doctors said that eating normally could kill her. When she was 12 months old they diagnosed Isolated Bulbar Palsy, a weakness in the nerves controlling swallowing, meaning that food could enter her lungs instead of her stomach. As she grew up, Tilly was forced to wear a backpack providing her liquid feed through a hole in her stomach, which took two hours at a time to administer, three times a day. Her mother, Amelia, said that doctors “clung” to the diagnosis although they said that they suggested she might recover. She contacted the Lucile Packard Children’s Hospital and they invited Tilly for tests. Her local community recently raised £10,000 to send Tilly to America for tests. Consultants there were intrigued that she had no neurological symptoms often associated with the palsy and they concluded that while she...

Brain Death or NHBD – Important Distinction

For the past several years, a little-known but disturbing revolution has been occurring in organ donation. In the understandable but sometimes alarming zeal to obtain more organs, the procedure called non-heart-beating organ donation (NHBD) has been quietly added to brain death organ donation in more and more hospitals all over the country. Although “brain dead” is a term many people erroneously associate with a coma-like condition or use to humorously describe an ignorant person, brain death is a legal and medical term that describes the irreversible loss of total brain function, even when the body can be kept going for a while using technology such as a ventilator. Since 1970, every state has added brain death to the legal and more familiar definition of death as the irreversible end of breathing and heartbeat. The addition of brain death as a legal definition of death revolutionized organ transplantation, because waiting until a person died naturally to harvest organs often resulted in organs too damaged for successful transplant.  With brain death, organs could be taken before breathing and heartbeat stopped, and organ transplantation became commonplace. But when brain death did not meet the demand for organs, NHBD was invented in the 1990s as a way to obtain more organs. NHBD is very different from brain death organ donation.   While brain death organ donation means the person is legally dead but still has a heartbeat when organs are harvested, the potential NHBD patient is alive but termed “hopeless” or “vegetative” by a doctor, usually soon after suffering a devastating condition like a severe stroke or trauma and while still needing a ventilator...

Right To Live

1           RIGHT TO LIVE — L. Burke, 44, is terminally ill. He has asked a court for the right to live. In the not too distant future he will present his family and his doctors with an impossible dilemma. They will have to decide whether the quality of his life has become so poor that it is no longer worth preserving. Burke was a postman, diagnosed with cerebellar ataxia in 1983, a degenerative brain condition; he has been given less than 20 years to live. But whether he lives or dies is a decision he believes only he should be permitted to make. He argued that his life is so precious to him that there is no point when it should ever become necessary for the medical profession to intervene and let him die. It is a legal action that could have far-reaching implications for thousands of other people whose lives will eventually become dependent on artificial nutrition. Burke is being supported by anti-euthanasia groups who say it is the first “right-to-life” case of its kind. He hopes his action will eventually change the guidance given to doctors. “What I am frightened of most is that there will come a time when I have lost the capacity to communicate but am aware that the hospital has decided to stop feeding me,” he said. “Once they withdraw artificial nutrition it will take between 2 & 3 weeks for me to die. I will be lying there in great distress but unable to tell any one that I want to live.” He is using the Human Rights Act to challenge the criteria...