The Legal and Ethics of Prognosing the Terminally Ill

Diagnosing a patient with a terminal illness affects critical decisions of the patient and their family.  Doors open to options such as death with dignity, resulting from a doctors prognosis.  Vague definitions of “terminal” with a lack of scientific reasoning behind the prognosis surfaces ethical dilemmas in the context of the law.  This article explores the intersection of law and ethics of prognosing the terminally ill, and the aftermath of the prognosis.

The practice of providing a patient’s prognosis has been revisited many times over the last century.  A hundred years ago, the phrase, “‘the doctor said’ was pronounced with almost religious conviction[1].”  Individual autonomy was almost non-existent due to the pedestal medicine was put on.  It was a classic case of paternalism, the interference an individual, against their will, and motivated by a claim that the person interfered with will be better off[2].  During a time where most doctors were white Protestant males, “they did what they thought was best, but what they thought did not include the traditions, morals and viewpoints of everyone else[3].”

Jerry Canterbury with a photograph of J. Edgar Hoover. Mr. Canterbury worked at the F.B.I. as a clerk in the late 1950s.

It wasn’t until a 1972 court case that a practice of patient’s rights to information and individual autonomy was solidified in law.  Canterbury v. Spence (1972) was a pivotal federal appeals court decision in medical ethics.  Jerry Canterbury had undergone a spinal surgery that went poorly, resulting in partial paralyzation of his lower extremities.  He sued his doctor, William T. Spence, for failing to adequately warn him of the risks of his surgery.  While Dr. Spence ultimately walked away from the event relatively unscathed, the court case became the foundation of the doctrine of informed consent.

The practice of informed consent began as a movement away from paternalism, towards individual autonomy. Cultural values and morals were taken into account, and no one was a better judge to those values than the individual themselves.  Doctors were no longer seen as “God,” but as a resource for patients to make decisions.  However, consent, and informed consent are different.  Informed consent is the practice where people the have freedom to decide what should or should not happen to his or her body and to gather information of all risks before undergoing medical treatment[4].  By being knowledgeable about risks, anticipated results, and alternatives, individuals are able to make the decision that they believe will be in their best interest.  Their consent would then be considered morally ethical to proceed with, whether or not it aligns with the doctors.

Today, when an individual gets diagnosed with a terminal illness, such as cancer, one of the first questions posed by the patient is often “how long do I have to live?”  Based off the ethics of informed consent, doctors are then morally obligated to give a quantified prognosis because it is an anticipated result of non-treatment.  Patients use this information as the backbone of how they proceed in the coming months, arguably making the most critical decisions of their lives.  In a study done by Harvey Chochinov, refusal to acknowledge a prognosis increases depression by nearly three times[5].  This begs the question whether providing this, likely incorrect, information to patients negatively affects the quality of the remaining life.

“Terminally ill” is defined extremely vaguely around the world. A UK based support organization for the terminally ill defines a terminal illness as “a disease that can’t be cured and is likely to lead to someone’s death[6].” However, the US legal definition gives an expected time frame of life expectancy to not go beyond 24 months[7]” One study in Korea of terminal cancer patients found that once the cancer was diagnosed as terminal, the average survival time was 69 days[8]. A large difference from the US legal definition of up to 2 years.  These vague definitions and lack of diagnosing criteria make it hard to create and follow existing laws with the term terminally ill.

A quantified prognosis of the terminally ill itself is not morally unethical.  It provides another layer of information for patients to understand and grasp the severity of their illness, thus making more informed decisions.  However, ethicality comes into question with the accuracy of these diagnoses.  According to Mayo Clinic Proceedings in November 2005, only 20% of predictions were accurate[9].  Doctors are unintentionally lying to their patients 80% of the time.  Doctors are trying, to the best of their ability, further inform their patients about their terminal illnesses, but medical technology has not advanced to that caliber yet.  With this misinformation, patients aren’t able to give informed consent, nor are they able to maintain bodily autonomy.  In the process of trying to do good, doctors end up doing more harm than good.  This violates Immanuel Kant’s Deontology theory.  Deontology suggests choices are morally required, forbidden, or permitted based on the norms of a society[10].  In contemporary society, lying is deemed as morally unjustified, and thus, giving patients incorrect terminally illness prognoses is unjustified, even though the lie is unintentional.  Therefore, it is unethical to continue to let doctors continue to make quantified life expectancy prognosis.

The harm here is more than just a morally correct or incorrect.  The harm here results in physical pain for the patient and families.  According to a prospective cohort study by Western Journal of Medicine, 65% of inaccurate life expectancy prognoses of the terminally ill were overestimates[11].  While optimism during the hardest part of one’s life does add to the quality of life, critical decisions like late admission to hospice care, or influencing patients to make counterproductive late-life decisions result in harm and regret.  The patient’s own conceptions of the future are flawed because of an inaccurate prognosis.  It is difficult to say whether or not an inaccurate prognosis inherently leads to worse off end of life decisions, but it definitely alters what these decisions are.  Patients are ultimately no longer making decisions that are in their best interest because of this misinformation, thus is unethical.

While there currently is no law forcing doctors to quantify a life expectancy prognosis, informed consent, which is stated in law, is the norm among the medical community, thus doctors are obligated to provide that information as accurately as possible to patients.  Everyone responds and progresses through illness differently, and there is medical technology that can accurately predict an individual’s trajectory accurately.  Until technology has progressed to a point where these predictions can be made with more accuracy, it seems unethical to continue incorrectly prognosing patients.

The practice of informed consent varies throughout the world based on prevalent cultural values. In the United States, informed consent is the leading medical practice as independence and autonomy are highly valued however, these values are not predominant world-wide. A study of terminally ill and hospice patients in Taiwan revealed that 82% of papers for medical treatment orders were signed not by the patient themselves but by family members. Researchers suggested that “this phenomenon probably reflects values in oriental cultures, in which family is the smallest unit of identity and decision-making. Therefore, end-of-life care for one member cannot be decided outside this fundamental social unit[12].” As in the United States, patients in many of these asian countries have the right to pass decision making authority to the next of kin in hopes that their loved ones will make decisions to protect their welfare.

Toward the end of a terminally ill patients’ life, quality of life significantly decreases. One study found that terminally ill patients take more opioids closer to death. Four weeks before death 42% were taking 49 mg/day while within the last 48 hours 87% were taking an increased average dose of 139 mg/day. Opioids have a known side effect of causing drowsiness and grogginess. This is also shown in the same study where the percentage of awake, drowsy, and comatose state patients were tracked and monitored. When in the last week before death, 56% where considered awake while 44% where considered drowsy. The percentage of those deemed awake decreased to 26% 24 hours before death and down to just 8% in the last 6 hours of death. Comatose patients increased to 12 percent with in the last 24 hours and increased again to 50 with the last 6 hours before death. Patients also experience death rattle, described as the sounds heard at the bedside due to fluid in the lungs, RMM, and cyanosis, the coldness in the extremities of the limbs. These struggles that both the patient and the patients families lead to some to advocate for other options[13].

A great fear for many people is the possibility of losing autonomy before death especially after receiving a terminal prognosis. Rights belonging to those who are terminally ill or nearing the end of life greatly vary among cultures worldwide. Although many individuals believe that a patient with a terminal prognosis, who will likely endure heightened suffering, should be allowed to seek means to hasten death, laws and cultural norms are not reflective of these ideals. The two ways to hasten death that are hotly contested throughout current world cultures are ending life through means of physician assisted suicide (PAS) or through euthanasia. Nations permitting either legal PAS or euthanasia, whether active or passive, are the global minority followed by the even smaller minority of countries accepting both means of death. Passive euthanasia refers to instances in which the patient or appointed health care power of attorney, purposefully refuses potentially life sustaining therapies such as an artificial feeding tube or respirator[14]. Conversely, active euthanasia describes instances in which a physician, upon explicit request, administers medication that will cause the patient’s death.  

In the Netherlands, a study noted the types of drugs used in various euthanasia and assisted suicide cases noting neuromuscular relaxants, potassium chloride, barbiturate, and opioids as the main drugs. In some of the cases different drug combinations were used but the types were not classified. In 95% of the Euthanasia cases either a Physician or Nurse administered the medication while in PAS cases 75% of patients administered their own lethal medication. In 69% of euthanasia cases neuromuscular relaxants were administered while in 71% PAS cases Barbiturate was administered[16].

Active euthanasia is uniformly illegal, in the United States however citizens in all 50 states are legally allowed to refuse life-sustaining therapies. On the other hand, the United States does not have one cohesive national law regarding PAS, instead individual states pass laws reflecting their local attitudes towards the issue. Of America’s 50 states, there are “nearly forty states which have an unequivocal statutory ban on physician assisted suicide and six states explicitly declare that they do not condone or authorize the practice in their respective health care laws[17].” This leaves only 6 states with mandated laws, including Colorado, Hawaii, Oregon, Vermont, Washington, and the District of Columbia, and 2 others, Montana and California, with court rulings[18]. The mandated laws of these 6 states model Oregon’s Death with Dignity Act (ODWDA) which allows Oregon residents, who meet certain criteria, to voluntarily end their lives by self-administering medication prescribed by a physician[19]. This practice reflects the common American ideal of striving to be unequivocally free and in control one’s autonomy even in the last moments of life.

The prospect of euthanasia or PAS being legal is becoming increasingly popular in many European countries. Belgium, Luxembourg, and the Netherlands are a few of the handful of countries in the world that legally permit active euthanasia[20]. In these countries, a person must be in a sustained state of unbearable pain or suffering that cannot be alleviated before a request for euthanasia would be considered[21]. In the Netherlands, the right to request euthanasia is outstretched to those who are just twelve years of age as long as the patient is deemed to have an adequate understanding and his or her parents agree[22].  Oppositely, the prevailing legal norm among European countries is to ban all forms of active euthanasia and PAS. Similar to the Death with Dignity Acts in the United States, Lord Falconer’s Assisted Dying Bill was brought to England and Wale’s House of Lords in 2014[23]. This bill wanted to allow patients with less than 6 months to live the right to end their lives with assistance of a physician. The bill stipulated that doctors must provide explicit information about all other available care options and must not coerce patients into taking life ending prescriptions[24]. This bill was ultimately shot down and both passive euthanasia and PAS are still illegal in the United Kingdom.

Citizens of the United Kingdom showing their support campaigning for Dignity in Death. https://www.dignityindying.org.uk/blog-post/bma-vote-assisted-dying-position/

Legal active euthanasia raises many concerns as to the ethical soundness of the practice. Citizens must be assured that they will not be needlessly killed if they are unfortunately diagnosed with a terminal illness. A case study in Belgium sought to study the official reported use of euthanasia in the years before its legality (1998), the year it was approved (2001), and the years following its enactment (2007). Researchers found an initial decrease in use of euthanasia in the year that it was legalized compared to years prior. In 1998 the total deaths caused by life-ending drugs made up 4.4% of total deaths in the study compared to 1.8%  in 2001. The subsequent years revealed an increase in use (3.8%) however it reached an equilibrium near that of the use of euthanasia before legalization[25]. The conclusions of this study show the use of euthanasia is not superfluous and can potentially decrease when put into law.

Similar to the popular view of many European countries, Muslim countries often deem euthanasia and PAS illegal on the grounds that either treatment would likely cause harm to the patient. Islamic law states that terminally ill patients should be treated so that as much injury or harm as possible should be avoided. Unlike in many Western cultures where the right to refuse life sustaining treatments is seen to be inherent, this sort of treatment must only be administered when it has no potential to cause harm nor delay the inevitable death of a patient. “Islamic law therefore does not allow the withholding or withdrawal of basic nutrition because this would result in death by starvation, which is a crime according to Islamic law and contrary to both the fundamental importance of the sanctity of life and the duty to provide nutrition to a fellow Muslim[26].” As with all cultures, there is great variety in the views held by different circles in various communities. A study of a hospital in Iran, a mainly Shia Muslim country, revealed that doctors believed they should employ any necessary medical treatment to sustain a life including artificial hydration or nutrition. Similarly, the Saudi Council for Health Specialties in Saudi Arabia, where Sunni Muslims make up the country’s majority, endorsed providing intravenous fluids and nutrition and stated that neither treatment should be withheld from a patient in need[27].

When someone diagnosed with a terminal illness, medical aid in dying (AID) legally becomes an option a patient can pursue in several states and countries.  This raises an ethical issue because these prognoses are so frequently incorrect.  The moral justification for AID is that it doesn’t inflict more harm, and it gives patients a way to leave their legacy on their own terms, giving the patient more autonomy.  However, the mis prognoses complicates that justification.  If the prognosis is incorrect, as it frequently is, allowing people AID is doing more harm than good.  The justification is no longer valid, and thus, it is hard to say whether or not any prescription of AID is legal.

Researched and written by Ashley Rager, Luke Workley, Qian Yi Pang

[1]Dickerson, Denise Ann. “A Doctor ‘s Duty to Disclose Life Expectancy Information to Terminally Ill Patients.” Cleveland State University, 1995.

[2]Dworkin, Gerald. “Paternalism.” Stanford Encyclopedia of Philosophy. February 12, 2017. Accessed April 05, 2019.

[3]Dickerson, Denise Ann. “A Doctor ‘s Duty to Disclose Life Expectancy Information to Terminally Ill Patients.” Cleveland State University, 1995.

[4]Eyal, Nir. “Informed Consent.” Stanford Encyclopedia of Philosophy. February 12, 2017. Accessed April 05, 2019.

[5]Desai, Anjali, and Andrew S. Epstein. “Doctors’ Prognostic Accuracy in Terminally Ill Patients.” Oxford Medicine Online, 2018.

[6] “What Is Terminal Illness? Definition of Terminal Illness.” Marie Curie. Accessed April 07, 2019.

[7] US Legal, Inc. “Terminally Ill Law and Legal Definition.” Terminally Ill Law and Legal Definition | USLegal, Inc. Accessed April 07, 2019.

[8] Lawton, C. “Impact of Awareness of Terminal Illness and Use of Palliative Care or Intensive Care Unit on the Survival of Terminally Ill Patients With Cancer: Prospective Cohort Study.” Yearbook of Oncology 2012 (2012): 239-40.

[9]Brody, Jane E. “Terminal Illness – Predicting Life Expectancy.” The New York Times. March 06, 2007. Accessed April 05, 2019.

[10]Alexander, Larry, and Michael Moore. “Deontological Ethics.” Stanford Encyclopedia of Philosophy. October 17, 2016. Accessed April 05, 2019.

[11]Christakis, N. A. “Extent and Determinants of Error in Physicians Prognoses in Terminally Ill Patients: Prospective Cohort Study.” Western Journal of Medicine 172, no. 5 (May 01, 2000): 310-13. doi:10.1136/ewjm.172.5.310.

[12] Chen. “The Practicalities of Terminally Ill Patients Signing Their Own DNR Orders-a Study in Taiwan.” Journal of Medical Ethics. May 01, 2008. Accessed April 08, 2019. https://jme.bmj.com/content/34/5/336.full.

[13] Morita, Tatsuya, Takahiro Ichiki, Junichi Tsunoda, Satoshi Inoue, and Satoshi Chihara. “A Prospective Study on the Dying Process in Terminally Ill Cancer Patients.” American Journal of Hospice and Palliative Medicine® 15, no. 4 (1998): 217-22.

[14] Cerminara , K.L, and A.  Perez . Therapeutic Death: A Look at Oregon’s Law, 6 Psychology, Public Policy, and Law. 503, 506,  2000. https://psycnet.apa.org/doiLanding?doi=10.1037%2F1076-8971.6.2.503.

[15] Bollman, Cyndi. “A Dignified Death? Don’t Forget About the Physically Disabled and Those Not Terminally Ill: An Analysis of Physician Assisted Suicide Laws.” Hein Online. Accessed April 07, 2019. https://heinonline.org/HOL/Page?collection=journals&handle=hein.journals/siulj34&id=406&men_tab=srchresults.

[16] (Groenewoud, Johanna H. “Clinical Problems with the Performance of Euthanasia and Physician-Assisted Suicide in the Netherlands.” The New England Journal of Medicine, February 24, 2000, 551-56.

[17] Bollman, Cyndi. “A Dignified Death? Don’t Forget About the Physically Disabled and Those Not Terminally Ill: An Analysis of Physician Assisted Suicide Laws.” Hein Online. Accessed April 07, 2019. https://heinonline.org/HOL/Page?collection=journals&handle=hein.journals/siulj34&id=406&men_tab=srchresults.

[18] “Physician-Assisted Suicide Fast Facts.” CNN. January 03, 2019. Accessed April 07, 2019.

[19] Haley, Kathleen, and Melinda Lee. The Oregon Death with Dignity Act: A Guidebook for Health Care Providers. Portland, OR: Center for Ethics in Health Care, Oregon Health Sciences University, 1998

[20] “Euthanasia & Physician-Assisted Suicide (PAS) around the World.” Should Euthanasia or Physician-assisted Suicide Be Legal? Accessed April 07, 2019. https://euthanasia.procon.org/view.resource.php?resourceID=000136.

[21] Brill, Koninklijke. “The Belgian Act on Euthanasia of May, 28th 2002.” APM Online. Accessed April 2, 2019.

[22] “Termination of Life on Request and Assisted Suicide (Review Procedures) Act.” ProCon. Accessed April 1, 2019.

[23] Delamothe, Tony. “Why the Assisted Dying Bill Should Become Law in England and Wales.” BMJ. July 2, 2014. Accessed April 1, 2019.

[24] “Assisted Dying Bill.” United Kingdom Parliament Home Page. September 06, 2014. Accessed April 07, 2019. https://publications.parliament.uk/pa/bills/lbill/2014-2015/0006/lbill_2014-20150006_en_2.htm.

[25] Bilsen, Johan. “Medical End-of-Life Practices under the Euthanasia Law in Belgium | NEJM.” New England Journal of Medicine. September 10, 2009. Accessed April 08, 2019. https://www.nejm.org/doi/full/10.1056/NEJMc0904292.

[26] Alsolamy, Sami. “Islamic Views on Artificial Nutrition and Hydration in Terminally Ill Patients.” Bioethics. July 29, 2012. Accessed April 07, 2019. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1467-8519.2012.01996.x.

[27] M. Tahmasebi & H.R. Namazi. To Give or Not to Give Fluids,Artificially: That Is an Ethical Dilemma!IJCP2009; 4: 161–162.

 

6 Comments

  1. Going to a doctor’s office today, we are always notified of all of the risks that we are taken by agreeing to any sort of medical interventions. This can be smaller risks like the radiation that we receive from getting an x-ray to a larger risk that can occur from more serious surgeries. It is interesting to think that this type of informed consent was not always the social norm of care at doctors’ offices. After the Canterbury v. Spence (1972), when a back surgery left a man partially paralyzed, there has been a large movement towards patient autonomy and informed consent.
    This idea was very prevalent in my research topic of mass death particularly looking at HIV/AIDS in America. HIV/AIDS medications can greatly increase an individual with HIV/AIDS’ lifespan and they can also decrease the chances of that individual spreading HIV to others. Unfortunately, at first theses treatments had severe side effects. In fact, these side effects were so severe that some patients choose not to receive treatment at all because doing so would decrease their quality of life. Eventually, these treatments advanced and now most people unanimously receive treatment. This idea highlights two really important ethical principles in the medical community: autonomy and informed consent. Patients were informed of potential side effects of receiving HIV/AIDS treatment and then they were given the autonomy to decide if they wanted to continue treatment or not. However, what happens if doctors medical think that a patient is making the wrong decision in terms of their health? Are doctors morally obligated to “heal” individuals even if it violates their autonomy? A similar paradox can be seen in terms of physician-assisted suicide and euthanasia. Doctors are told to “do no harm”, but when living is causing patient extreme pain is it still ethical to “do no harm” by continuing to let the pain live? Or is it more humane to let a patient use their own autonomy and die through physician-assisted suicide? In both cases, I argue for complete autonomy and allowing patients to choose what they believe is best for their bodies.

  2. I really like how this post takes us through the past in which doctors statements were held in extremely high regard to the current day in which their statements might not be serving us as well as we think. One would think that a doctor answering all of your questions would turn out to be helpful, but this is not the case for terminal patients. A misleading diagnosis could result in months of sadness and depression for patients dealing with the possibility of their death. This post brings up a valid argument into how doctors should go about giving a terminal prognosis to their patients. If a physicians end goal is to provide healthcare for their patients but in doing so they cause more harm than good, then they are not worthy to be a doctor. Since this is unintentional and the root of this problem is the law in place, it should most definitely be altered. It is possible that the law in place that forces doctors to answer a patients detrimental question should be changed. The ethical perspective brought up in this post is extremely similar to the perspective brought up in the post “Doctors as End-Of-Life Patients”. This post brings up the idea that doctors might be doing more harm than good by telling a patient of a possible terminal prognosis. Similarly, the other post brings up the idea that doctors are administering treatments to patients that they themselves would not like done to them. Combined these perspectives bring up a scary thought, in that doctors might not be as helpful as society perceives them to be.

  3. This post did a great job analyzing the cultural, ethical and scientific differences in how terminal illnesses are defined all over the world. The given definitions of “terminal illness” vary all over the world, and the “Hospice and Palliative Care Cross-Culturally” posting also mentions these things. Another thing I found interesting about this post was that euthanasia and physician-assisted death are both prohibited in 19 out of 28 countries in one of the illustrations. This breakdown begs the question: is this practice truly ethical, and how can cultural implications cause this practice to be considered ethical or unethical?

  4. I thought this post was great at highlighting the shift in the doctors role from an almost “God” to a resource. This idea of a doctor having omnipotent power is seen in our article of verbalizing death as the doctor holds the power to officially declare death just like the doctor hold the power to diagnose one with a terminal illness and give them a prognosis. I thought it was fascinating that in South Korea a terminally ill cancer diagnosis means they typically die within 69 days while in the US it can be upwards of years. It seems that we have misdefined terminally ill, but this leads to the question on if we want to redefine terminally ill. Does it matter if your life span is 3 yrs or 3 months if you are still going to die prematurely from the disease. I personally think that terminal does not need to have a time frame but rather just a known result of death. However, it was upsetting to see that 65% of diagnoses are overestimation. I know it is not possible for the doctor to be completely accurate but that number does seem high and it can mess with a patients mental health to have misinformation. Autonomy has been gained over the years from just listening to a doctor to know having the right to informed consent. However, it is a grey area that in many states one can refuse life saving treatments but cannot choose assisted suicide when essentially these two things lead to the same result.

  5. Jared Goldberg

    April 24, 2019 at 8:21 pm

    Terminal illnesses are a major problem that affect the majority of the world population on a global scale. This essay analyzed how terminal illnesses are distributed across different countries. A question that I have for the authors of this essay is what are the spatial implications of terminal. illness from a political perspective.

  6. I found the topic of this post particularly fascinating. How is it even conceivable that one person (a physician) has so much power to determine how you might approach the end of your life and live those last times just because they have the ability to give you a time frame before death. I question how ethical it is to be able to give a time table, as death is not supposed to be a scheduled event according to nature. But, at the same time, the ability to know when one’s end may come gives them freedom to live out their final days however they choose and gives them the ability to drop everything and live according to their greatest desires. But, terminal diagnoses can also lead to patients choosing to terminate treatment or seek life-ending measures. The legality of a physician’s power could be questioned here, as they do have a hand in determining the end of a patient’s death when the patient makes these choices as a result of being told their illness is terminal.

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