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Testimony of

 

William L. Toffler MD

National Director, Physicians for Compassionate Care

Professor of Family Medicine

Oregon Health & Science University

Portland, OR  97239

 

before

 

The Select Committee of the House of Lords on the Assisted Dying for the Terminally Ill Bill

 

 

Lord MacKay of Clasfern

The Earl of Arran

Baroness Hayman

Baroness Jay of Paddington

Lord Joffe

Baroness Finlay

Lord McColl of Dulwich

 

 

 

Portland, Oregon

December 10, 2004

 

 

 

            I appreciate having the opportunity to share my perspective and experience about end-of-life care and assisted suicide in the State of Oregon.   I have lived and practiced in Oregon for over 25 years.  I first practiced full-time in a rural community in Oregon for 6 years and I am now in my 20th year of academic practice and teaching as a professor of Family Medicine at Oregon Health & Science University (OHSU). 

 

My intent with my testimony is to make you aware of the profound shift in attitude that has occurred in my state since the voters of Oregon narrowly embraced assisted suicide 10 years ago.  A shift that, I believe, has been detrimental to our patients has degraded the quality of medical care, and has compromised the integrity of my profession.  I firmly believe that you, as key leaders of Britain's parliament, should reject the seduction of assisted suicide.  In fact, my hope is that you will maintain and perhaps even strengthen the long-standing tradition of Dame Cicely Saunders to provide the best care at the end of life.[1]

Dame Cicely Saunders' work was not only good for individual patients, I believe the presence, success and growth of Saunders' hospice movement made Great Britain less susceptible to the promotion of assisted suicide and euthanasia.  Saunders' model of genuine compassion in care for those at the end-of-life provides a sharp contrast with the with the notion that the best relief of suffering can be accomplished by dispatching the sufferer. 

Thus, in 1975, Derek Humphry, a British writer and advocate for assisted suicide and euthanasia, found little success in promoting his radical ideas after "helping" his first wife Jean to "take her life." [2] Undeterred by his poor salesmanship, Humphry had the temerity to publish the account of the "suicide" in Jean's Way.[3]  Humphry now drew the attention of police.  Humphry acknowledged the accuracy of his account just before leaving England to take up residence in the United States.

Soon thereafter, Humphry and his second wife, Ann, formed the Hemlock Society.2 Humphry and his Hemlock members began working legislative channels and introduced a series of ballot measures in various states on the West Coast-first in California and then in Washington.  Each time they failed, yet each time he and his Hemlock comrades learned.  They learned that social change required three elements.  First, they had to couch the ugly with euphemisms.  So they coined the term "death with dignity" to mask the reality that suicide and euthanasia-acts which gave new expanded power of doctors-were the real agenda. 

Second, as most voters weren't worrying about the need for assisted suicide, they had to introduce a fear factor-fear, such as being trapped on machines, of being in unbearable pain or, fear that one's wishes would be ignored.  These ideas weren't true, but were effective in promoting fear and the need for a "solution".

Third, as there was (and is) little science to support the notion that the situational killing of some humans makes good sense, they would shift their arguments to morality.  In a largely secular state such as Oregon, they claimed that the "religious right" was trying to impose their morality.  It was an argument that seemed to hold great sway among the un-churched.[4]

In 1994, they applied all of what they had learned to the state of Oregon-in Oregon Humphrey's dreams of legalizing assisted suicide finally came true.

It is ironic to think that Derek Humphry, or, at least, his ideas which were once resoundingly rejected, are being embraced by some of you as prominent members of the House of Lords.  I find it remarkable to think that you have followed Humphry to his adopted home more than 6000 miles to consider codifying his misguided ideas into British law.

 

When I came to Oregon, the concept of assisted suicide was unthinkable.  I had lived and practiced in three states and had never had a patient even discuss assisted suicide with me.   In the first half of my career, I cared for my patients without regard to labels such as "terminal."  I helped patients and families make difficult decisions to opt for or against aggressive efforts to cure.  When a patient or family chose away from aggressive efforts to cure, we would then collectively focus all of our energy and effort on helping that patient to live fully and comfortably until their inevitable death-their natural death.

Since assisted suicide has become an option, I have had at least a dozen patients discuss this option with me in my practice.  Most of the patients who have broached this issue weren't even terminal.  I'd like to share just one of these encounters with you today.  My hope in doing so is to go deeper than the flawed statistics that provide cover for the change in my practice and my patients.

One of my first encounters with this kind of request came from an urgent care patient with a progressive form of multiple sclerosis.  He was in a wheelchair yet lived a very active life-in fact, he was a general contractor and quite productive.  While I was seeing him for an condition unrelated to his multiple sclerosis, I had asked him about this chronic illness and, specifically how it had affected his life.  He acknowledged that living with multiple sclerosis had been and was a major challenge.  He had gradually lost more and more functional ability, yet had (at least to that point in his life) risen above his disability. I remember commenting that I was amazed that he had been able to stay as productive as he had been.  He went on to acknowledge some of his fears and told me that if he got too much worse, he might want to "just end it."  Struck by this phrase, I asked him what he really meant by it.  He told me that he might consider utilizing assisted suicide.  While he wasn't suicidal, he told me that he wasn't sure that his life would always be worth living.  I asked him about relationships in his life and he acknowledged how close he was to some of his family-especially his 17 year-old daughter.  At the same time, I tried to paraphrase my understanding of his view, "It sounds like you are telling me this because you might ultimately want assistance with your own assisted suicide-if things got a worse."  He nodded affirmatively, and seemed relieved that I seemed to really understand.

I then told him that I was grateful for his candor about his condition and for sharing his thoughts and fears, a glimpse of his family connections and supports, as well as his views about his life and assisted suicide.  I told him that knowing about all of these not only helped me to be a better doctor but they also would help me (or his regular doctor) to provide the best (and most individualized) care for him as possible.

I then asked him if he would open to hearing my perspectives about him as an individual as well as a patient.   He smiled and said "sure." 

I told him that I could readily understand his fear and his frustration and even his belief that assisted suicide might be a good option for him. At the same time, I told him that should he become sicker or weaker, I would work to give him the best care and support available.  I would respect his wishes regarding specific options for his care and I would not abandon him.  I told him that no matter how debilitated he might become, whether he could work or not, that, at least to me, his life was, and would always be, inherently valuable. As such, I would not recommend, nor could I participate in his assisted-suicide.  Furthermore, based on what he had shared with me about his daughter, I told him that I believed that his daughter would say the same-were she present.  Acknowledging this truth with a smile, he simply said, "Thank you."

While I have had many other individuals initially express similar sentiments about assisted suicide, I have never encountered a human who didn't respond to my unconditional respect for their inherent worth.  In fact, I once had a similar experience of  a changed patient perspective (based on my belief in the inherent value of my patient's life) in caring for a Hemlock Society Board member.  As a result of my willingness to share my perspective, she stopped perseverating about ending her life and began to interact positively with the family members at her bedside.   She subsequently not only kept me as her doctor during her hospital stay, she chose to come to me (rather than her "neutral" doctor) after her discharge.

The truth is that we are not islands.  How physicians respond to the content of a patient request has a profound effect not only on a patient's choices but also of their view of themselves and their inherent worth. 

Thus, I believe that it is critical that we distinguish between the content of what is expressed and the underlying message.

When a patient says "I want to die"; it may simply mean "I feel useless."

When a patient says "I don't want to be a burden"; it may really be a question, "Am I a burden?"

When a patient says, "I've lived a long life already"; they may really be saying, "I'm tired.I'm afraid I can't keep going."

And, finally, when a patient says, "I might as well be dead"; they may really be saying, "No one (or, at least, I feel no one) cares about me."

I teach medical students and residents and provide medical education for practicing physicians. 

Unfortunately, too many physicians, like Kevorkian, are unable to communicate at a deeper level with patients who make such statements.  Many physicians are totally unaware of underlying depression or the underlying meaning of a despondent patients' musings.[5] Many studies demonstrate that assisted suicide requests are almost always for psychological or social reasons.  In fact, in Oregon there has never been any documented case of assisted suicide used because there was actual untreatable pain.[6]  As such, assisted suicide has been totally unnecessary in Oregon. 

Sadly, the legislation passed in Oregon does not require that the patient have unbearable suffering, or any suffering for that matter.  The actual Oregon experience has been a far cry from the pervasive televised images and advertisements that seduced the public to embrace assisted suicide.  In statewide television ads in 1994, a woman named Patty Rosen claimed to have killed her daughter with an overdose of barbiturates because of intractable cancer pain.[7]  This claim was later challenged and shown to be false.  Yet, even if it had been true, it would be an indication of inadequate medical care-not an indication for assisted suicide.

While we have excellent pain management modalities available (that can virtually always successfully manage pain), published studies confirm that the reason for assisted suicide is almost never intractable pain.  In fact, a study in Lancet in 1996 documents that those who have more pain are actually less likely to consider assisted suicide. [8]

 

Nevertheless, the proposed legislation for Great Britain is much different than Oregon's. Oregon does not allow for euthanasia.  What your bill encompasses is more like the Netherlands than in Oregon.  Reporting in the Netherlands has been problematic. [9]  The Remmelink report was undertaken because of a failure to obtain reliable information from the official Dutch reporting system.  The Remmelink report and its sequels done in 1995 and 2001 document that the Dutch have progressed from euthanasia on demand for a terminally ill person to euthanasia for those who are not terminal.  These reports document hundreds of cases of ending life without specific request (ELWERP)-really involuntary euthanasia. [10] While the reality of involuntary euthanasia may have been open to debate over euphemistic acronyms such as ELWERP, there can no longer be doubt that the Dutch have fully immersed themselves in the chilling waters of involuntary euthanasia. Only in the past few weeks has the world learned of the Dutch Groningen Protocol. [11] The Groningen protocol calls for the establishment of an "independent committee" charged with selecting babies and other severely handicapped or disabled people for euthanasia.  Under the Groningen protocol, if doctors at the hospital think a child is suffering unbearably from a terminal condition, they have the authority to end the child's life. The protocol was developed primarily for newborns, yet it covers any child up to age 12.11

In Oregon, as you have heard from my colleagues, the doctors participating in assisted suicide are prescribing injectable formulations of sodium pentothal.6  Just as in the Netherlands, we have no systems in place to ensure accurate information about the actual practice of assisted suicide.  Astonishly, there is not even inquiry about the potential for secondary gain for family members who may benefit from the premature death, the is the so-called  "suicide" of a "loved one." Such benefit could be in the form of an inheritance,  a life insurance policy, or, perhaps even simple freedom from previous care responsibilities.

Most problematic for me has been the change in attitude within the healthcare system itself.   In Oregon, life in its final stages has been devalued even for those individuals who do not want assisted suicide.  People with serious illnesses are sometimes fearful of the motives of doctors or consultants.  Only this week, a patient with metastatic cancer contacted me.  She is concerned that an oncologist might be one of the "death doctors."  She questions his motives-particularly when she obtained a second opinion from another oncologist.  The second opinion is more sanguine about her prognosis and treatment options.  Whether one or the other consultant is correct or not, such fears were never an issue before assisted suicide was legalized.   Oregon, the so-called "progressive" state has, in reality, regressed 2400 years to a confused time where physicians sometimes deliberately gave deadly poisons-even hemlock-to their patients.

In Oregon, I regularly receive notices that many important services and drugs for my patients-even some pain medications-won't be covered.  At the same time, assisted suicide (under the euphemism "pain management") is fully covered and sanctioned by the State of Oregon and by our collective tax dollars.12]

When assisted suicide passed, many promoters predicted quick passage of similar legislation in other states. As Oregon's so-called model legislation is closely examined by other legislatures (or other voters in referenda around the country), every proposed legislation or ballot measure has been wisely rejected. Even the liberal press who, for years, had given Kevorkian a free pass were finally shocked by the blatant videotaped snuff murder aired on "60 minutes."  Legislators and an increasingly informed electorate can now more readily see through the euphemisms, the false fears, and misleading statistics.   The Hemlock society has once again been forced to reinvent itself-they have co-opted the term "compassionate" despite their clear agenda to eliminate suffering by killing the sufferer.   Yet the Oregon experience has served a purpose.   Many people now know that the Oregon Medical Association was right-assisted suicide is seriously flawed.[13]  As you have heard, with virtually every case that has come to public light, the closer one looks at individual circumstances, the uglier is the reality.

In summary, I again urge you to reject the seductive siren of assisted suicide.  Oregon has tasted the bitter pill of barbiturate overdoses and many now know that our legislation is hopelessly flawed.  We urge you as key leaders of Great Britain to not drink of our cup.  Great Britain, the birthplace of Dame Cicely Saunders, and the Hospice movement, and a model to the rest of the world, deserves better.

 

 

 

 

 

References



[1] Saunders C. The evolution of palliative care.  Patient Educ Couns 2000;41(1):7-13.

[2] ERGO homepage. http://www.finalexit.org/bioframe.html

[3] Humphry, D. Who will help another to die. http://www.finalexit.org/essay_who_will_help.html

[4] Moore J, Doyle B.  Letter from Oregon:  the state of euthanasia.  Commonweal Dec 19, 1997.

[5] Morse SG, VanKorff M.  Recognition, management and outcome of depression in a primary care.  Arch Fam Med 1995;4: 99-105.

[6] Oregon Health Division.  6th Annual Report on Oregon's Death with Dignity Act, March 10, 2004.

[7] Mark O'Keefe, "TV ad on assisted suicide leaves out part of the story," Oregonian, November 4, 1994.

[8]Emanuel EJ, Fairclough DL, Daniels ER, Clarridge BR. Euthanasia and physician-assisted suicide: attitudes and experiences of oncology patients, oncologists, and the public.  Lancet 1996; 347: 1805-10.

[9] Hendin H, Rutenfrans C, Zylicz Z.  Physician-assisted suicide and euthanasia in the Netherlands. Lessons from the Dutch. JAMA 1997; 277(21):1720-2.

[10] Medical Decisions About the End of Life, I. Report of the Committee to Study the Medical Practice Concerning Euthanasia. II. The Study for the Committee on Medical Practice Concerning Euthanasia (2 vols.), The Hague, September 19, 1991.

[11] Hewitt H. Death by Committee: What the Groningen Protocol says about our world, and where it might lead next. The Weekly Standard 2004: 12/02/2004

[12] Sparer M.  Health policy for low income people in Oregon.  Urban Institute: http://www.urban.org/url.cfm?ID=309092

[13] Oregon Medical Association.  Resolutions of the House of Delegates.  1997

 


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