By Tia Will
I am writing in support of SB 128, the California End of Life Option Act. I share the view that the concerns expressed by those who question, or even those who oppose the act should not be lightly dismissed. As a doctor, I have given both the advantages of and potential problems with the End of Life Option Act a great deal of thought. I would like to share my perspective with you.
In the 36 years since I entered medical school, there has been a gradual change in the understanding of what that part of the Hippocratic Oath which we still swore to at the time, “First, do no harm,” actually meant. During my early training years, there was a strong philosophical tendency to view doing “no harm” as doing everything in our power to keep a patient alive and to do it with correct technique as expeditiously as possible while keeping the patient as comfortable as possible and committing no errors. We were highly trained in this particular perspective and set of procedures to accomplish this goal. Unfortunately at that time, we were not also taught that perhaps all of our equipment, invasive procedures, medications with sometimes harmful side effects were perhaps not indicated or the optimal treatment if the patient did not, within the framework of their desired outcome, in fact benefit. Because of this philosophy, much harm was indeed done.
Over the years, we have gotten much better at offering the patient choices instead of assuming that they want us to “do everything”, or to do what we would choose under the same circumstances. We will honor the patient’s wishes to either receive or not receive many different types of treatments even if we feel that the treatment is unlikely to extend their life or, harder still for many of us, if we are sure that the treatment would benefit them. We have become more respectful and willing to honor the patient’s autonomy with regard to treatment options. There are many areas of medicine in which we allow patients to refuse treatment that we know would extend their life. We allow patients to refuse needed transfusions, or transplantation, or surgery, or chemotherapy even if we are sure that the alternative will be death. We do this out of respect for the principle of autonomy. The principle is based on the idea that the individual has the right to privacy and self determination with regard to their own body.
Over those same years, many people have been coming to a different philosophical outlook on the meaning of death. Many patients, colleagues, friends, acquaintances and family members now view death as a natural transitional part of life as opposed to an enemy to be fought to the bitter end. This change in viewpoint has naturally led to greater introspection about how one would like to approach the last months, weeks and days of their own life. I have spoken with members of different religions including Christians, Jews, Sunni Muslims, a Buddhist, and a number of folks including myself who have strongly held spiritual and/or moral beliefs but are not affiliated with any religion. I have encountered a wide range of beliefs about the meaning and implications of death. What I have not found is anyone who believes that they have the right to make a determination of how any other human being chooses to live that last interval of their life. And yet, under current law, this is exactly what we do. We limit the end of life choices of those who would choose their own location, company, timing and means of departure from this stage of life. We restrict their choices regardless of how little time they may have left, how much pain or fear or helplessness, or nausea they may be experiencing. This stance definitely inflicts needless harm.
I believe that there are three main areas of concern expressed by groups that have opposed the “death with dignity” laws. These are religious concerns, concerns expressed by the medical community, and concerns that are expressed by groups worried about the rights of those with disabilities. I would like to address as many of these concerns as I can.
First, the religious concerns. The main theme that I have encountered in reading and discussion is the belief that life is given to us by a supreme creator and our lives belong to that creator, and are not ours to take. Regardless of how one does or does not feel about this premise, we have chosen as a society to not put a commonly held religious belief over the religious or moral beliefs of the individual. We call it freedom of religion. It is my strongly held belief that just as I do not have the right to force my religious beliefs on others, no one else has the right to tell me that their God forbids my choice to end my life now instead of being forced to live out the anticipated six months or less that I am projected to live regardless of my degree of suffering during that time.
Second, the concerns of the medical community. Concerns I have heard expressed are that a doctor might be coerced into providing a prescription against their own conscience, and second, is the fear of litigation that may result from either a failure to prescribe, or to not prescribe, an appropriate medication. On the one hand doctors may fear that, if they write a life-ending prescription, surviving family members or organizations opposed to the lethal prescription may sue. On the other hand, surviving patients might sue their physician because they did not prescribe a medication to end the patient’s life. I believe that none of these concerns is valid. We have extensive experience with options that allow health care providers to opt out of providing services that are against their moral code. I am unaware of any doctor ever being forced into providing any specific treatment against their beliefs in all of my years in medicine, sometimes at the cost of making elaborate arrangements for another physician to provide the needed service. Also, the law as proposed has an opt out clause allowing doctors to either prescribe within the specifications of the law, or to opt out according to their own beliefs. In addition, we have 16 years of experience with the law in Oregon in which providers have both legal and licensing protection for both provision of lethal prescriptions under the strict guidelines of the law, and for refusing to prescribe, also under the strict provisions of the law.
Of greater concern to me have been objections raised by organizations that oppose these End of Life Options bills because of the adverse affects that they believe that they may have on either the individuals involved or on our society. In order to address these concerns as thoroughly as possible, I chose to use the summary of these concerns found on the web site of the Disability Rights Education and Defense Fund (DREDF). Below are their major concerns and my responses to them.
1. Legal Alternatives Avoid A Great Harm: The DREDF authors argue that there are adequate protections in place already for those who are suffering at the end of their life. They correctly cite laws allowing refusal of treatment, availability of palliative care, and narcotic pain medications. What they omit is that these alternatives are inadequate for many patients. They omit that for many patients currently available pain medications are inadequate, or cause unacceptable side effects. And not everyone who is truly suffering is experiencing pain. Others may have refractory nausea, vomiting or other gastrointestinal disturbances, uncontrolled seizures, inability to move or to control spontaneous movements, inability to breathe or the perception thereof. The End of Life Option Act is about the voluntary relief of intractable suffering that may or may not be limited to pain. They also neglect to mention that while hospice and palliative care is available in major urban areas, it is frequently not available in rural areas. My own family was affected by this lack of geographically readily available care twice. The End of Life Option bills are intended to meet an expressed need that is not being adequately addressed by our current systems.
2. Fear, Bias And Prejudice Against Disability: If the issue here were a non-voluntary expedition of death, I would agree that this would be a serious concern. However the article’s authors do not suggest this. What they do suggest is that the individual does not have the right, even in the last six months or less of their life to set their own priorities.
“As many thousands of people with disabilities who rely on personal assistance have learned, needing help is not undignified, and death is not better than reliance on assistance.” This may indeed be true for the many thousands of people who are using assisted living to their satisfaction. This bill is not directed at them, nor does it threaten them in any way. What the law does is to allow the terminally ill individual to decide for herself, which is better, death or reliance on assistance in the face of intractable suffering. The authors also trivialize this choice by characterizing it as choosing death over having someone help them to the bathroom. This completely dismisses the very real suffering of people who need help not only with their use of the toilet, but with their breathing devices, their ability to reposition themselves in bed, their ability to swallow, their ability to communicate by words or signs of even to wipe their own nose, or scratch when it itches. The need for assistance should not be reduced to who cleans up after a bowel movement and it should not be decided for the individual by the state.
3. An Ailing System Made Worse: The DREDF contends that: “A significant problem with legalization is the deadly interaction between assisted suicide and profit-driven managed health care.” For me, this has nothing at all to do with assisted suicide and is an excellent argument against our fee for service, profit driven health care. Their premise is that disabled individuals will be denied care because of their disability. However, in each of the cases that they cite, all the individual had to do to obtain full care was to state that they wanted it. They cite no cases in which care was actually denied, only those of individuals offended that they were asked about advanced directives and care preferences. Further, they cite no cases of care denied to anyone in Oregon or Washington or Vermont in which care has been denied to any patient who has obtained a legal lethal prescription. Nor have they mentioned that no treatment penalty is incurred by not taking the prescription, or by rescinding the prescription once it has been provided. These safeguards are part of SB 128.
4. Deterioration of Health Care in Oregon: The DREDF authors argue that access to health care in Oregon, including treatments for which insurance companies will refuse to pay, and a decline in the efficacy of palliative care have been caused by the existence of assisted suicide in Oregon. What is being left out here is that insurance companies in many states, most of which do not have death with dignity laws, also refuse to pay for certain types of chemotherapy or treatments that are felt to have a statistically poor chance (as defined by the insurer) of being successful. Again, while they are correct that this is a flaw in our provision of health care, they make no convincing link to Oregon’s death with dignity law. Likewise, if palliative services have declined, then this is an area with need for improvement but again cannot be attributed to the passage or implementation of this law.
5. The Broad Indirect Impacts on Health Care: Here the authors quote two doctors who believe that the ability to write a lethal prescription at the repeated request of the patient will erode trust between the patient and the doctor. As a doctor, I see this as precisely the opposite. I believe that the optimal trust between a patient and a doctor is when the patient is presented with all of the available alternatives and options and allowed to select from these according to their own set of values and beliefs. Under SB 128 no doctor is forced to participate in prescribing these lethal medications. A doctor has the option of being perfectly frank with a patient and informing that patient that this is not a service she provides. The patient knows where the doctor stands and is free to go to another provider. There is no breech of trust since both the patient and the doctor in Oregon know the range of the options and know that they are each free to participate or not as they choose.
The authors further argue that the provision of a lethal prescription breeches the “first, do no harm” directive. I fail to see what harm is being done to the mentally competent patient who when considering his life expectancy and degree of suffering wishes to leave this stage of life at the time of his own choosing. In this regard, it is important to note that it is not the doctor, but rather the patient deciding whether or not to self-administer the medication. The doctor’s only role is to determine eligibility and to make the prescription available. I believe that it is equally possible to do harm by inaction as it is by action. In the case of a patient who is seeking to choose the time of her own death within the anticipated six month range in which she is expected to live, to not provide the desired medication is by far the greater harm.
6. The Myth of Free Choice and Self Determination: The DREDF states that instead of providing for self determination, the death with dignity laws actually make it possible for a relative or caretaker to request and administer the prescription without the consent of the patient. However, this is belied by the fact that two requests must be made by the individual themself in the presence of a doctor on two different occasions at least 15 days apart. As with other areas of interviewing patients in which there may be a conflict of interest, it is common practice for the practitioner to speak with the patient in private to explore any potentially sensitive areas. They also neglect in this section to specify that the ability to prescribe is limited to patients who are judged to be mentally capable. From my 30 years of experience, these safeguards are sufficient to ensure that the prescription is being provided at the request of the patient herself.
The authors then go on to suggest that family members may actually murder the patient either by using the prescribed medication or by some other means such as suffocation with a pillow. If this is considered by the authors to be a real risk, the correct response would be referral to adult protective services, not limitation of those who are requesting this service of their own free will. It should also be noted that the authors cite no instances in which this is believed to have occurred related to this law, only that they believe it is a possibility.
The authors correctly note that elder abuse and neglect are major problems within the United States. This is a wonderful argument for addressing these societal problems. It is not an argument against planned end of life timing. They claim that some elders may choose death over continuing to live in abusive situations or that they might prefer death to living in a skilled nursing facility. I agree that this may well be the case. I personally would prefer during the anticipated last six months of my life to die at home at a time of my own choosing than to be moved into a skilled nursing facility or hospital for the last moments of my life. The authors seem at this point to believe that they, or the state, have the right to make that decision for every individual. They falsely claim that the death with dignity law actually decreases individual patient choice. I strongly disagree. If terminally ill patients truly want to die, they will succeed one way or another. Ultimately each individual does have the means to bring about their own death if they truly wish it. The prescription provides them with a certain and painless way to achieve that goal rather than forcing them to shoot, poison, hang or bleed themself to death.
7. The Fundamental Loophole of the Terminal Illness Prognosis: This is, in my mind, one of the strongest of the arguments made by the opponents of the end of life options bill. It is true that for many diseases it is extremely difficult to predict the anticipated life span of a given individual since the prediction is based on statistical outcomes. They correctly point out that the prediction of six months is frequently in error and they site instances in which individuals who have been given a prognosis of six months have gone on to live for years. If we were not talking about a purely voluntary process of requesting the prescription, obtaining the prescription, and using the prescription at a time of one’s own choosing, I would also be against this law. But this is not the case. Only the individual involved can determine if they believe the prognosis, and only the individual knows what degree of suffering and what rate of decline they are experiencing. The decision to use the prescription is theirs and theirs alone. If I choose to end my life, and I am incorrect and I would have lived another five years, first, we will never know that was the case, and secondly, only I would know whether or not I was suffering sufficiently to want my life to end in any event.
8. Safeguards in Name Only: The DREDF authors state that the provisions of the law that specify that doctors can prescribe the lethal drugs only under certain tightly controlled circumstances only results in “doctor shopping” if a given doctor refuses to write the prescription. The fallacy of this objection is that the law pertains to all prescribing physicians, whether the doctor is the first that the patient has consulted or the 10th, the law under which the prescription can be written is the same. In order to prevent coercion to consult with another physician if the first one consulted will not prescribe. This is by no means unique to the death with dignity legislation. Many doctors refuse to perform certain procedures or prescribe certain medications based on personal belief. Should we bar women from consulting with a second doctor if the first refuses to prescribe birth control pills on religious grounds? More seriously, should we bar a patient from getting a blood transfusion if her surgeon of choice is a Jehovah’s Witness and will not order the transfusion? The authors use the term “doctor shopping” as a pejorative instead of recognizing that sometimes there is not a good fit between the needs of the patient and the philosophy or skills of the physician in which case a second opinion is completely warranted.
9. Alternatives: Presented But Not Provided: The authors correctly point out that the Oregon law provides the stipulation that all alternatives must be discussed. They also point out that all alternatives are not necessarily provided. This is true. But then it is also true of every other aspect of our lives. If there are not alternatives available other than living at home with relatives who do not have the capability of providing adequate care, living in a skilled nursing facility or death, then to present other alternatives is to lie to the patient. There are many individuals for whom this will ultimately be true. The authors suggest that there are always other options available, but do not suggest what these might be or how they would be paid for. This is an argument for developing a more humane society with more care options. It is not in my opinion an argument for depriving any terminally ill individual of his preferred choice of death at the time and location of his choosing.
10. Good Faith: A Safeguard for Doctors, Not Patients: The authors concede a point that seems to have been a concern for doctors, that they did not have adequate legal protection under the law. Here the authors state that in their opinion, the good faith standard of the Oregon law does provide prescribing physicians with adequate protection under the law. I am in agreement with these authors on this point. Where we disagree is that it does not also protect the patient. I believe that a doctor acting “in good faith” as the law requires will obtain a full history and documentation of the patient’s illness and prognosis, the doctor will explore all available alternatives with the patient and ensure that the patient is mentally capable of making the decision. Under stipulation of the law, the doctor will be only one of two physicians making these determinations independently. As a doctor, I believe that this kind of due diligence by doctors acting “in good faith” is indeed one of the patients best protections and I see no evidence that it would not apply in this medical situation to the same degree that it applies to all aspects of medicine. No doctor is perfect, however, I see no indication that the same care would not be taken in this medical situation as in any other.
11. The Danger to People with Depression and Psychiatric Disabilities: The authors contend that the passage of a death with dignity law is a danger to people with depression or other psychiatric disorders. I disagree with this for several reasons. First, the law only applies to individuals who have less than six months to live. I do not believe that suffering should be minimized or categorized differently for those who may also suffer from depression of have psychiatric disorders. To me, excluding these individuals from a medication available to others is by far a greater risk than a depressed individual choosing this route of death solely because of their depression. The issue of other psychiatric disabilities is resolved by the need for determination of mental competency. Why would one deny a lethal prescription to a mentally competent, terminally ill person who for example had a diagnosis of schizophrenia or bipolar disorder? How about an anorexic who also had the diagnosis of cancer, should she be denied the desired lethal prescription?
12. Ignoring What Lies Beneath: The Abandonment of the Patient: The authors reiterate their statement that the existence of the death with dignity law represents an abandonment of the patient by the doctors. To me, this could not be further from the truth. It ignores the fact that for some patients, such as myself, abandonment would mean to me the lack of respect for my desire to be provided with the legal means to medically end my own already limited life at the time and place of my own choosing with the family and friends of my choice with me. To deny me this exercise of my free will is to me the ultimate in abandonment. I have no desire to make this very personal decision for anyone else. And I maintain that no one else neither an individual, nor the state, has the right to enforce their beliefs upon me at the end of my life.
13. Minimal Data and Fatally Flawed Oversight: The authors cite a number of instances in which they believe that there is inadequate oversight of the law in Oregon. I do not know whether or not their assertions are correct. What I do believe is that if this is true, it is not an argument against the law, but rather an argument for adequate documentation and oversight. I have reservations, however, about their interpretation of adequate oversight based on one of their objections. They state that there is no regulation for the disposition of the prescription if the patient dies of other causes leaving the prescription unused. This indeed would seem to be a dangerous situation. However, it is no more dangerous than what we now have with any number of drugs that can be lethal if used by an individual for whom they were not prescribed. This therefore becomes an argument for uniform disposition of drugs after death of a patient, not an argument against a death with dignity law.
14. So-Called “Narrow” Proposals Can Easily Expand: The authors claim that the “slippery slope” argument is not only likely but virtually guaranteed. They quote the New York Task Force on Life and Law:
Once society authorizes assisted suicide for … terminally ill patients experiencing unrelievable suffering, it will be difficult if not impossible to contain the option to such a limited group. Individuals who are not [able to make the choice for themselves], who are not terminally ill, or who cannot self-administer lethal drugs will also seek the option of assisted suicide, and no principled basis will exist to deny [it].”
The DREDF goes on to cite the experience in the Netherlands of progression from assisted, self-administered lethal medication to physician administration and euthanasia. What they do not point out is that this has not occurred in Oregon or any other state with a death with dignity law thus undermining their claim of inevitability.
What I have attempted to convey so far are the reasons that I am not in agreement with the opposition to the Wolk-sponsored End of Life Option bill. What I have not yet provided a full picture of why I support it.
As a practicing doctor I believe strongly in certain principles. I believe in patient autonomy. I believe that after as full a presentation as I can make of the patients condition, the available alternatives with the likely outcomes, both good and bad, of each, it is ultimately up to the mentally competent patient to choose which course of action is best for them. I believe that we have rightfully moved away from the paternalistic medical model in which the doctor always knows best. I do not believe that I am always correct in my assessment of what is right for my patient. I do not always believe that she makes the “right” decision. But what I do believe completely is that when it comes to her body, her life, the decision is hers to make, not mine. Although the Hippocratic Oath is no longer recited at graduation from medical school, I still believe very firmly in the precept of “First, do no harm”. I have come to view this proscription in a broader sense than simply do what is necessary to keep the patient alive. I now perceive it to be an admonishment to act in the best interest of the patient as she perceives that interest, not necessarily in what I believe, or what the state mandates, but in accordance with alleviation of the patients suffering in accordance with her beliefs and values.