"All types of pain in all parts of the world are inadequately
treated..." C. S. Hill, MD. JAMA 1995: 274: P. 1881-1882
"We all must die. But if I can save someone from days of torture,
that is what I feel is my great and ever new privilege. Pain is a more
terrible lord of mankind than even death itself." Albert
Schweitzer, humanitarian, physician, theologian and composer.
"The United States is the only advanced industrial society in the
world where a patient's ability to pay determines access to health care."
D. E. Joranson, MSSW, Pain Research Group, University of Wisconsin
Many terminally ill patients experience severe pain. Some forms of cancer are
notorious causes of pain in dying patients. A statement from a NIH Consensus
Development Conference suggested that:
"...there is no 'magic bullet' or universally accepted
treatment for the relief of pain and suffering."
"Contemporary science and clinical practice cannot assure
the full relief of all pain."
"The data indicate that there remains a proportion of
patients whose pain presents difficult, and so far unsolved, problems
for successful management."
"Concerns are focused on reported undermedication of
individuals with acute pain and chronic pain associated with malignant
diseases as well as reported overmedication of people with chronic
pain not associated with malignant disease."
There are barriers to pain relief. They include:
Some types of pain in some individuals cannot be adequately
controlled with current technology and medications that are now
Some patients and their physicians are concerned about the possible side effects of pain
medication, including addiction.
Inadequate training of medical professionals.
Pain management is not universally available, particularly to the
over 40 million Americans who lack health insurance, and as many as 80
million who are under-insured.
Dr. Robin Bernhoft comments:
"Experience consistently shows that patients often want to
die because of undertreated pain. Yet with good medical care their pain
is almost always manageable, and they almost always regain their desire
to live. Pain relief typically can be achieved without impairing mental
Referring to doctors who "simply don't know how to treat
depression and pain." Dr Bernhoft states:
"According to many studies, between 50 and 70 percent of U.S.
doctors fit that description." 8
Dr Bernhoft, and many others, believe that if terminally ill people
were given access to adequate pain management, then requests for physician
assisted suicide would be greatly reduced.
Scope of the problem:
Pain management appears to be in a state of chaos in North America:
Medical writer John Horgan cited an article in the Journal of the
American Medical Association for 1995-NOV which described the
results of a study called "Study to Understand Prognoses and
Preferences for Outcomes and risks of treatments (SUPPORT)."
The study involved over 9,000 patients in five hospitals. They
reported "substantial shortcomings in care for seriously ill
hospitalized adults." Horgan commented: "More often
than not, patients died in pain, their desires concerning treatment
neglected, after spending 10 days or more in an intensive care unit."
1 A Massachusetts legislature subcommittee report on
pain management mentioned that the SUPPORT study "found that
half of patients who died in the hospital experienced moderate or
severe pain at least half the time during their last three days of
The American Pain Society (APS) issued a news release in
1999-FEB concerning individuals with chronic pain. They found that
over 40% "with moderate to severe chronic pain have yet to
find adequate relief, saying their pain is out of control..."
The study found that "only 22% had been referred to a
specialized pain treatment program or clinic." APS
president, Dr. Russell Portenoy, said "This survey suggests
that there are millions of people living with severe uncontrolled
pain. This is a great tragedy. Although not everyone can be helped, it
is very likely that most of these patients could benefit if provided
with state-of-the-art therapies and improved access to pain
specialists when needed." (This study may not be indicative
of the problems of the terminally ill; patients with cancer were not
included in the study.) 2
A 1997 study of cancer patients receiving oral medication for their
pain showed that two concerns prevented them from accepting pain
inadequate information about how to manage pain, and
exaggerated concern about addiction and side effects. 3
A 1997 article reported that too many cancer patients continue to
experience unrelieved pain. Roadblocks to treatment include:
knowledge of modern pain medications among doctors and nurses, and
government regulations concerning some important pain medications in
many jurisdictions. 4
Another 1997 article found that only 35% of members of ethnic
minorities received pain medication at recommended dosage strengths.
This was compared to 50% of Caucasian patients.5
A survey of 48 families of deceased cancer patients in a
comprehensive cancer center revealed that 10 families (21%) considered
pain treatment to be incomplete or inefficient. 6
Patient's rating of pain is often different from caregivers'
impression. Using a pain scale of 0 to 10 (0 = no pain; 10 being the
most severe pain) only 64% of caregivers at one hospital matched their
patients' scores within 2 points. 7
Everyone is aware of the extremely addictive properties of drugs such as
morphine and heroin. But what is less known is that these drugs' addictive
properties are primarily seen among healthy people who are not in pain. They
become addicted when they use these drugs illegally for the feeling of euphoria
that they generate. If a person who is in severe pain properly uses these
narcotics for the relief of pain, they do not feel euphoria; they do not become
addicted; they simply have relief from intense pain. A wide range of people are
in need of such medication; they include from individuals who are suffering from
advanced cancer, untreatable back pain, and limb amputations.
Unfortunately, most physicians are not trained in the use of opioid therapy
for the relief of intense chronic pain. Even worse, the members of some state
medical boards are also unaware of the need for this use of narcotics. When they
review physicians in their jurisdiction who specialize in the relief of pain,
all they see is "oversubscription" of controlled substances. They have put
pressure on physicians to prescribe lower quantities of these narcotics, thus
causing their patients to live in continuous pain. Some boards have pulled the
medical licenses of physicians specializing in this field. Each time this
happens, the pain management of dozens of patients is terminated. Without
narcotics, at least some probably commit suicide; with narcotics, they can lead
The money trail:
David E. Joranson, of the Pain Research Group, at the University of
Wisconsin Medical School wrote in 1994: "Access to professional
services, prescription drugs, and medical equipment is critical to obtaining
effective pain management and to restoring quality of life. The US is one of the
few countries in the world where access to these products and services is based
on the ability of a person to pay for them, either through personal resources or
third-party private or government health insurance." 11He
estimated about 34 million Americans under the age of 65 have no health
insurance. By 2002, this had grown to over 45 million; it continues to increase
at about 1 million a year. On top of that group are others -- perhaps as many as
80 million. These are individuals who have limited insurance, and cannot afford
to pay the extra costs associated with their illness. Racial minorities comprise
a disproportionately large share of these groups. 12According
to the American Cancer Society, low income Americans suffer greater pain from
cancer than average. 13
Many people over the age of 65 have less ability to pay for prescription
drugs because they are on fixed and low incomes. Yet these are the individuals
who are most likely to need pain medication due to age-related degenerative
diseases like arthritis and terminal illnesses like cancer. 14
Some pharmaceutical manufacturers have limited programs to make their
medication available to indigent patients. The American Cancer Society is
one referral source for these programs for cancer patients.
The Pain Relief Promotion Act
In 1999-OCT, the federal Pain Relief Promotion Act (PRPA) was passed by the
House, by a vote of 271 to 156. If the bill had been passed by the Senate and signed
into law by the president, it would have prevented the use of federally regulated drugs
in cases of physician-assisted suicide. It would have prohibited the U.S. Attorney
General from making exceptions. Its effect would have been to overrule the Oregon
Death-With-Dignity Law which allows physicians to assist
terminally ill people to commit suicide. The constitutionality of such a Federal
law is highly doubtful. The U.S. Supreme Court decision of 1997 implied that
states can pass laws which permit physician assisted suicide, and that
individuals have a right to take advantage of these laws if they wish. The
Federal Government can hardly prevent such access.
If the law had been passed, it would have have a profound effect on the management of pain:
On the positive side, some patients who are currently unmedicated
or severely undermedicated may have their pain relieved, to a degree. The law
would allow doctors to prescribe narcotics for the relief of pain, even if
the drugs have the side effect of shortening a patient's life.
Passage of the law would legalize this very common method of pain control;
it is currently on shaky legal ground in some jurisdictions. Some physicians
currently leave their patients in agony out of fear of prosecution. They
could theoretically be charged with murder in some states if they shorten
the patient's life by even a small amount. If the bill becomes law, doctors
would be able to prescribe some level of medication, and reduce their
patient's agony, without endangering the doctor's safety.
On the negative side, many physicians would fear giving adequate
levels of narcotics to manage properly their patients' pain. If the
physician misjudged the dose and give the patient too much medication, they
could cause that patient's quick death. The physician may be charged under
the act, and end up with a 20 year jail sentence. Each physician who
prescribes a narcotic for pain relief will have an army of DEA investigators
looking over their shoulders, evaluating each dose and trying to assess the
doctor's intent. The tendency will be for many doctors to err on the side of
their own safety and prescribe inadequate medication to control the pain.
This way, they will make certain that the patient's death will not be
accelerated sufficiently to attract the attention of the DEA. Compassion in
Dying ® comments: "...study after study reveals that doctors
usually under-treat pain. They often use mild, ineffective drugs when
morphine or another opiate would be appropriate. The reason often given is
fear of scrutiny or discipline from state and federal authorities." 15This law would greatly aggravate this situation.
It is ironic that a bill called the "Pain Relief Promotion Act"
will result in leaving countless patients in severe, continuous pain,
if it becomes law. In addition, the main purpose of the bill is to prevent
Oregon citizens who are dying in pain from taking advantage of their
state's assisted suicide law.
The bill became stalled in the Senate, and died.
The following information sources were used to prepare and update the above
essay. The hyperlinks are not necessarily still active today.
Journal of the American Medical Association (JAMA), 1995-NOV. Cited in John
Horgan, "Right to Die," Scientific American, 1996-MAY.
A. Riddell, article, Oncology Nurse Forum, 1997; 24: Pages 1775 to 1784.
K. Redmond, article, Support Care in Cancer, 1997; 5: Pages 451 to 456.
C.S. Cleeland et al., article, Ann. Intern. Med., 1997; 127: Pages 813 to
Y. Merrouche, et al., "Quality of final care for terminal cancer
patients in a comprehensive cancer centre [sic] from the point of view of
patients' families," Support Care in Cancer, 1996; 4: Pages 163 to
E. au, et al., "Regular use of a verbal pain scale improves the
understanding of oncology inpatient pain intensity," Journal of
Clinical Oncology, 1994, 12: 2751 to 2755.
Robin Bernhoft, MD, "How we can win the compassion debate,"
Focus on the Family, Citizen Magazine, 1996-JUN-24.
"The integrated approach to the management of pain,"
National Institutes of Health: Consensus Development Conference Statement,
1986-MAY 19-21. Available at
Compassion in Dying® is an Oregon-based agency that is
concerned about the under-treatment of pain in terminally ill people. They offer a no-cost
review of patients' pain management from a clinical and legal perspective. They are "challenging
the states with unreasonable legal barriers to good pain management." See: http://www.compassionindying.org/