Date: Fri 12-Jun-1998

Publication: Bee

Author: SUZANN

Quick Words:

health-death-dying

Full Text:

Death: The Ultimate Quality Of Life Issue

(with cut)

BY SUZANNA NYBERG

Dying is primarily a personal, not a medical, experience and to do it well,

the ethics panel at Danbury Hospital suggests that people whose lives cannot

be saved should have help and support in facing death. The panel recently

looked at end-of-life issues from the legal and medical perspectives.

Richard Newman, a Danbury attorney, noted that while medicine can keep people

alive for extended periods, most people react in horror to the idea of their

loved ones languishing on machines. The Connecticut legislature has responded

to these concerns by giving patients the right to reject life support measures

under certain circumstances and conditions. "Technology has outstripped the

law," Mr Newman said. "But here the law has made great strides to keep up and

spare people."

A life support system, noted Mr Newman, is any medical procedure which would

postpone the moment of death, including mechanical devices to get food and

water into the patient. Under Connecticut law, a patient can be removed from

life support if it is in the physicians's best judgment, if the patient is in

a terminal condition and is permanently unconscious, and if the patient has

indicated, either verbally or in writing, that these are her wishes. "A coma

must be irreversible and the patient's illness must be in its final stage," Mr

Newman said. "Just because one is suffering from cancer does not mean that one

is terminal."

Mr Newman advocates that all people make a living will, a document which

rejects artificial means to prolong dying. "The living will does not foster

suicide," he said, "but instead permits a natural process, dying, to go

forward."

Mr Newman also believes that people should designate someone as both a health

care agent and attorney-in-fact, titles which give the person power to convey

a patient's wishes and ensure that they are implemented, even by going to

court if necessary.

Living wills can be revoked at any time under any conditions, including mental

derangement, Mr Newman observed. Divorce, however, automatically removes a

spouse as a health care agent. "The ex won't be able to go in and say, `unplug

him, unplug him,'" Mr Newman said.

Mr Newman believes that the Connecticut legislature has done its best to

streamline and clarify the law. If a physician refuses to honor a patient's

wishes, she must remove herself from the case. No institution can require

someone to make a living will, particularly as a way to reduce costs. "All

institutions must make a reasonable effort to notify next-of-kin before

beginning life support," Mr Newman said.

Connecticut does not have an assisted suicide law. "Anyone, be it nurse,

doctor, or spouse, who helps someone kill himself has committed a felony," Mr

Newman said. "One cannot cruelly and unnecessarily prolong the dying process,

but one cannot hasten it either."

Making Dying Easier

Julia MacMillan, an ICU nurse at Danbury Hospital, offered tips on making

dying easier. One can make a living will without a lawyer and without

notarization, she explained. These wills, while making decisions easier for

other family members, also demand that one reflect on the question of what

constitutes life. "If life is more than lying in bed with the heart beating

and if death is a comfortable time without strangers and without machines,

then get it in writing," she said. Otherwise, health care providers will look

at a patient's illness as a medical problem to be solved and will do

everything to save a life.

It is important, Ms MacMillan said, that the family be aware and supportive of

a patient's decisions. She recalled the case of one man who had suffered a

massive stroke. When his daughter found out that he was "no code," or that no

extraordinary measures were to be taken, she became furious. "It took three

days for her to understand that her father would die anyway," Ms MacMillan

said. "But in the end, her father was able to die in an important way,

comfortable and with someone holding his hand."

Ms Macmillan also said that people must not feel that they have signed their

right to treatment away simply because they have made a living will. When Ms

MacMillan's mother-in-law was dying of emphysema, she decided that she wanted

to reverse the directives of her will and have as much treatment as possible

for a week to see if her condition would improve. Another man, who had

unresolved issues with his daughter, chose to be put on a ventilator until she

arrived. Although he lapsed into a coma before his daughter could make peace

with him, she felt better about seeing her father while he was still alive.

Ms MacMillan wants people to understand the implications of opting for "full

code" or extraordinary measures. "Code 99 means that medical personnel will do

whatever is necessary to save someone's life," she said. "If someone is flat

lining, a 200 pound man will jump on your ribs, even break them, to get your

heart going." A patient with a full code will receive chest compressions,

defribullation, or electric shocks to jump start the heart, medications, and

intubation where a tube is inserted into the nose and all the way down the

throat to the trachea to assist with breathing. "Intubation is so

uncomfortable that the patient must be kept sedated," Ms MacMillan said. "She

is no longer deemed competent."

Ms MacMillan made the difficult decision of having her mother, an Alzheimer's

patient, make a "no code," resulting in the patient being treated like others,

made comfortable, but not brought back if the heart stops. "It was not easy to

decide not to save her life," she said. When the paperwork was not retrieved

and doctors were going to err on the side of prolonged life, Ms MacMillan had

to intervene. "My mother got to die in my arms with my brothers and sisters,"

she said.

A Responsibility

Edward Volpintesta, a physician at Danbury Hospital, believes the doctor ought

to help people die in this manner. "The doctor has both a legal and ethical

responsibility," Dr Volpintesta said. "Legally one must honor the directives,

but ethically the doctor ought to initiate a dialogue to help someone on the

last part of life's journey." Dr Volpintesta stressed the importance of having

an ongoing relationship with a physician, one where the doctor is acquainted

with the patient's family, background, and spiritual life. If one has this

sort of relationship, the doctor becomes more than someone cutting bowel and

inserting a pacemaker; he becomes part of the treatment in a mystical way. "A

doctor should shoulder some of the pain," he said.

Staying free of pain as one prepares to die is important to Lyn O'Brien, a

Newtown resident and nurse with 20 years hospice experience. "Dying will

happen to each of us," she said. "The more technology interferes with that

process the worse it is." Ms O'Brien believes that end-of-life care will

improve if we can think of dying as a natural process. If we think of it in

those terms, she suggests, it will be easier for us to provide comfort instead

of futilely continuing to treat.

A large part of making people comfortable is administering drugs. Because we

know how pain medicines can be used, Ms O'Brien says, there is no excuse for

not keeping someone free of pain. "We must undo the myth of addiction," she

said. "Pain is what someone says it is and some people have a low tolerance

for pain." Ms O'Brien remembered her beginning nursing days where she had to

tell cancer patients that they must writhe in agony another hour before

receiving a shot. Things have only begun to improve as medical schools still

spend just one hour addressing the pharmacological care of the dying. "When

pain can be erased, then dying can be a valuable experience," Ms O'Brien said.

"The dying can listen to music, visit with a priest, get a back massage."

Ms O'Brien sees dying as a release of the spirit. "When someone is ready to

release his spirit, that person is ready to die," she said. Recalling an

afternoon visit with a man in the last stage of bone cancer, she said that

once the man could grasp what was happening to him, once he got honesty from

those around him, he was ready to die. He died at 11:30 that night.