Dorothy Guellec

What

this title suggests is that we have to look between the lines and live between

the lines. Life is almost always terribly complex. Readers of this commentary

may feel convinced that the business model does not fit healthcare, so I need

not preach to the converted. However, you may not be familiar with all the

intricacies imbedded in this system, and given the recent decision by the second

largest HMO to finally heed the wishes of the doctor, the landscape becomes very

murky indeed. Should doctors be permitted to give pain medication with the DEA

looking over their shoulders? If they do not ease the patients’ pain then they

can be sued for failing to treat pain appropriately.

Let’s

examine the Roseburg case. The Oregon Board of Medical Examiners accused Dr.

Paul A. Bilder a 54-year-old pulmonary disease specialist, of unprofessional or

dishonorable conduct and gross or repeated acts of negligence. Between 1993 and

1998, according to the board, Bilder: "Treated an elderly man who was dying

of cancer and in pain with ‘substantially inadequate amounts of pain

medication,’ contrary to a hospice nurse’s request for stronger pain drugs and

anti-anxiety medication." There were 7 other cases where he refused to give

morphine and other narcotic painkillers. The Oregon Board of Medical Examiners

has made it a point in recent years to educate doctors about the need for

adequate but appropriate pain control. Board officials speak on the topic at

conferences and serve on a statewide task force on pain issues. This new

approach is in contrast to its hard-line treatment of doctors who used to over

prescribe in the past, particularly in the 1980’s during the national "War

on Drugs." The whole subject of pain control raises legal issues in the

light of last month’s ruling in the Oregon case, the first ever to discipline a

doctor for under treating pain. So, now the American public has to decide

whether the doctor is allowed to treat, under treat (with the DEA looking over

his or her shoulder) or even over treat and cause the unintentional death of the

patient.

As

for the private sector, one has to wonder about a system that suddenly does an

about face as UnitedHealth did on November 9th and will no longer try to

second-guess the Doc. This was a no brainer, but why did it take so long? The

No. 2 U. S. health insurer will stop the practice as of Tuesday. The CEO said in

the future "We’re not making a decision on whether they (the patients) need

a procedure, it’s whether or not they’re covered." The whole scheme is

probably a public relations ploy to turn around a very negative image of HMO’s.

There remain doctors who still need the approval of bureaucrats. As you would

expect these involve the whole area of mental health.

The

big pharmaceutical companies pay more for advertising than for R & D

(research and development). A USA TODAY survey found that the most popular drugs

often cost two, three, even four times as much in the U.S. as in other

industrialized nations. After her mastectomy four years ago, Ruthmary Jeffries

got a tip from her oncologist. Buy prescription drugs in Canada. Every

industrialized country – except the U.S.-imposes some form of price controls on

prescription drugs. As the lone holdout, the United States pays the price,

literally.

Subtle

and non-so-subtle coercion

The

whole question of public relations and buzz words characterizes the past 15 or

so years. How many times do you run across "good death" "a bad

death" or names of organizations such as "Death with Dignity"?

What do these words really imply? In the L. A Times October 18th a reporter

tells the story of an 81 year old woman who "died well". The patient

and her husband were forced to sell their home of 46 years and move into a

"board and care home" (whatever that is) to be near their son and

daughter-in-law. I can’t tell if this reporter is naive, serious, ironic or just

crass. The story continues, "In the patient’s last nine months of life,

they (female patient and her husband) formed a regular snail’s-pace parade to

their son and daughter-in-law’s for dinner. Finally, the best part, odd though

it sounds: _____’ condition worsened, as the Parkinson’s continued its slow

assault on her muscles and the leukemia kept her from fighting off

infections." This reporter subtitled her article "Health: Alternatives

to hospices or painful, futile hospital care slowly emerging, but there’s a long

way to go." Obviously there was no understanding of the hospice movement or

what it tries to do, let alone forcing this couple to sell their home after 46

years to foot the medical care.

Dame

Cicely Saunders is considered the world’s foremost expert in the care of the

dying. In 1967 she opened St. Christopher’s Hospice in London, the first

research and teaching hospice. Now at 80 she till goes to work every day and

lives around the corner from the hospice. When she was in the U.S. in May 1999

she told the N Y Times, "What I have learned over all these years,

especially of what people can do at the end of their lives if they have good

care, makes me wary of a quick way out. I think it denigrates people into just

being an incurable illness, and I think it is socially, really very

dangerous."

 

You

might have heard other words being tossed around i.e. (1) hospitalists (2)

Patient Self Determination Act (3) living wills (4) health care proxy, etc. What

do they mean and how do they apply to me? The PSDA (Patient Self-Determination

Act) became effective December 1,1991. It requires health care providers to

maintain written policies and procedures that will educate patients and the

public as to their right to execute advance directives and to direct their

post-autonomous medical care. As a federal law, jurisdictional constraints

require that the PSDA apply only to institutions receiving Medicaid and Medicare

funds. Nevertheless this includes most providers. Many patients have serious

misconceptions about life-sustaining treatments, either because their physicians

did not take the time to explain things clearly, or because they have lost trust

in the patient physician relationship once so sacred. This is a vast multi

cultural society with as many traditions. Legal decisions must be examined

within a defined cultural context. Given the cherished diversity of U.S.

citizenry, it is only logical for differences to exist in the conceptualization

of life, personhood, health, illness and death. These views in an ideal world

would be discussed fully in the hospital with the patient, physician and family

and patient advocate. This does not happen and there are countless

misunderstandings, to say the least.

Take

the case of Mr. D, a 64-year old African-American with metastatic prostate

cancer. Here are some excerpts from the patient’s narrative re: encounters with

the healthcare system. "Yes, yes, yes, I’ve told them. It’s already been

five times and yet they keep sending somebody new with one of them phony smiles

to as, ‘If your heart were to stop beating or your lungs were to stop working,

would you like us to keep you alive with machines?’ ‘Yes, doctor’ I’d reply,

trying to sound as upright as I could, ‘I sure would’ And then wouldn’t you know

it, bam! They’d reach down for plan number two." "The first one up was

that young child-in-training. The intern. He seemed all right at first, but he

sure did bring out my ugly side. I’ve got grandchildren who look older than him

and they might be in grade school, but at least they know enough to address me

with respect. Shoot, even my enemies call me Mr. D. None of that first name,

‘Marvin’ stuff he keeps giving me. But I guess that’s the way it is nowadays.

People lack home training. I hear that they give us old, colored folks to the

young ones, so they can get some experience in before moving on to real

patients." Mr. D. is regarded as a "difficult" patient. Entries

describe him as "manipulative and passive aggressive." A social worker

comments that he is "not focused on his cancer and seems out of touch with

his emotions." There are many ethical and cultural difficulties in this

case. Coercion masquerading as choice, cultural insensitivity, mistrust and lack

of meaningful choices are just a few of the problems in modern healthcare. All

these problems are worse when it comes to poor and illiterate and minority

patients. These groups tend to believe almost any prognosis given by doctors.

They will be heavily influenced by professional opinions, and will have no way

to judge whether the opinions are wrong, biased, influenced by finances (that is

HMO’s and their bottom line) or even malicious. Some elderly folks might be

pressured into feeling guilty that there are even alive, and that their

pre-mature death would be doing those around them a big favor by accepting the

almighty decisions of professionals.

Life

is complex and decisions cannot be made easily. We have to look at our own

humanity, realizing that one day we may be in a vulnerable situation. Maybe the

U.S. is coming to a vital moral crossroad that could result in some substantive

changes or, at worst, a malicious agenda to kill the frail, old, and ignorant.

Robert Twycross a leading pain specialist and a hospice doctor for over

twenty-five years eloquently says, " During this time my opinions on many

issues have changed, however, one issue that has not changed has been my belief

that it would be a disaster for the medical profession to cross the Rubicon and

use pharmacological means to precipitate death intentionally." This type of

thinking could have serious ramifications all those who are chronically ill. He

then goes on, "Rather medicine and nursing should grasp the opportunity to

pursue education and gain information and knowledge."

Dorothy

Guellec 

Medical Specialty 

Member Foreign Press Ass’n