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Should We Want the Right to Die? A Primer on Physician-Assisted Death (PAD)

January 14, 2019
Physician-assisted death (PAD) entered the national conversation in the 1990s with the highly publicized case of Dr. Jack Kevorkian, a Michigan pathologist, who chose to assist his patient, in the final stages of ALS, in dying. Dr. Kevorkian was ultimately tried and convicted of second-degree murder and delivery of a controlled substance.[1] In 2014, the discussion surrounding PAD emerged again when Brittany Maynard, a 29-year-old with terminal brain cancer, elected to move to Oregon in order to end her life under the state’s Death with Dignity Act (DWDA).[2] Despite almost 30 years passing since PAD entered the national dialogue, it remains a largely unresolved issue in the United States.

There are several moral, legal, and religious objections by private citizens, activist groups, healthcare providers, and religious organizations to practicing PAD. Some of these objections are rooted in the principle of the sanctity of life, while others are centered on the role of a medical professional to provide care, and per the Hippocratic Oath taken by physicians, to do no harm.[3] While these objections merit further discussion, this article will not debate the morality of PAD. The goal of this article is not to alter or disrespect deeply held beliefs. Instead, it will assess current PAD legislation and how it functions, attempting to explain how PAD policy might operate if applied to a broader area of society. Regardless of individuals’ stances on PAD, 22 states will consider related legislation this year, so it is worth analyzing how these policy interventions will impact end-of-life care in the United States.

Image: Current physician-assisted death laws and statutes in the United States. Source...Image: Current physician-assisted death laws and statutes in the United States. Source: Death With Dignity.

Currently, the end-of-life treatment options that are legal in most areas of the United States and practiced without much ethical controversy include terminal sedation and aggressive pain management. Patients can also opt to refuse of life-sustaining treatment.[4] As of now, no states permit euthanasia. Euthanasia, unlike PAD, requires a provider to administer life-ending drugs to his or her patient. PAD, however, specifies that patients must self-administer these drugs. In the United States, varying forms of PAD are legal in seven states and in the District of Columbia. Variation arises among these forms primarily because states differ in whether they allow intravenous (IV) or oral administration of life-ending drugs. These locales collectively illustrate how, when PAD is added to the list of accessible end-of-life options, patients may elect to access it in lieu of other care.

Although there are several ways health providers can assist patients in speeding up the dying process, PAD refers to a particular method where a physician, at the request of his or her patient, prescribes medication with the intent, and eventually the end result, of causing that patient’s death.[5] Typically, the medication prescribed is a barbiturate, a drug which acts to depress the central nervous system, at a dosage which is known to be lethal. The medication is either intravenously or orally administered depending on the preferred and legally permitted form of PAD.[6] Analyzing Oregon’s implementation indicates that with comprehensive legislation, states can mitigate concerns about PAD being used in medically inappropriate scenarios.

Case Study: Oregon’s Death with Dignity Act (DWDA)

Oregon provides a practical example of what comprehensive PAD legislation would look like in the US, as multiple other jurisdictions have modeled their own PAD legislation after Oregon’s DWDA. DWDA legalized the practice of physicians providing their terminally-ill patients (who have approved PAD requests) with lethal doses of medications. Patients then orally self-administer these drugs. As a state that legalized PAD just over two decades ago, Oregon provides a good example of how PAD policy could look in other parts of the United States.[7]

Some major concerns about legalizing PAD center around patients inappropriately seeking or accessing PAD. These concerns include the possibility of terminally-ill patients flooding into the states that have legalized PAD and electing to participate without exploring other end-of-life care options or choosing PAD in secret from their families. Critics of PAD also cite concerns that vulnerable patients—such as those who lack medical insurance, have mental health concerns, come from a racial minority, or have lower levels of education—will disproportionately seek PAD as an end-of-life treatment option.[8] However, data collected after the implementation of DWDA in Oregon suggests that most of these concerns about vulnerable patients accessing PAD are not salient in practice.[9]

Image: Use of life-ending drugs from Death with Dignity Act (DWDA). Source: Oregon H...Image: Use of life-ending drugs from Death with Dignity Act (DWDA). Source: Oregon Health Authority

Through the end of 2017, 1,275 Oregon residents have died from prescriptions accessed through DWDA. Since its implementation, PAD has gradually increased from being responsible for 1 in 1000 deaths to 3 in 1000 deaths in the state, but the underlying reasons for this increase are unclear.[10] Oregon public health data indicates that PAD recipients have a median age of 74 years, and they are 94.4 percent white. Cancer was the most common disease among PAD recipients, with 76.9 percent of patients having a terminal cancer diagnosis at their time of death. Around ninety percent of PAD recipients had been enrolled in hospice, 93.7 percent informed their families of their decision, and only 1.53 percent did not have medical insurance. Furthermore, over 72 percent of PAD recipients received some college education.[11] These findings support a study in the New England Journal of Medicine which found little evidence backing the claim that vulnerable groups, such as those with financial concerns or a lack of higher education, were given prescriptions for PAD in lieu of typical end-of-life treatment.[12] In fact, another study from the New England Journal of Medicine found that while Oregon physicians granted roughly 16.7 percent of PAD requests, only 10 percent of the patients who initially requested PAD ended up taking the life-ending drugs.[13] After looking at these statistics, it is apparent that poor minorities with lower levels of education are not receiving PAD at rates significantly higher than their rich, white, educated counterparts. This indicates that PAD policy is not currently being used in the nefarious way critics suggest it could be.

There may still be cause for concern about the merits of PAD as an end-of-life treatment option. A 2008 study in the Journal of General Internal Medicine found that PAD patients’ family members cited concerns about finances and being a burden, depression, and the lack of a support system as important reasons for why they believed their loved ones opted to end their lives.[14] Additionally, researchers identified a need to improve screening for depression among PAD-eligible patients in Oregon.[15] This indicates that national PAD legislation will need to comprehensively address concerns about vulnerable populations electing to use PAD for reasons other than exercising their personal autonomy.

Arguments for PAD

There are personal and societal advantages of PAD. PAD represents perhaps the most intense form of autonomy. For many individuals, the choice to die with dignity and be in control of putting their own physical suffering to an end is paramount. Some degenerative diseases take extreme tolls on one’s physical and mental well-being, and with death as an inevitable short term outcome, many would like to pass away peacefully. Furthermore, a death that precedes the worst symptoms of fatal disease can save families from financial crisis. In some dire situations, families choose to keep a loved one on life support out of guilt and sorrow, despite the near non-existent chance of recovery or revival. PAD puts the control in the hands of the individual, not the family. Next, PAD lifts a significant economic burden on the medical system. In 2014, Medicare spent an average $34,529 per senior who died in that year for overall medical costs.[16] This value is almost four times the average cost per senior who did not die that year.[17] If seniors elect to use PAD, the use of medical resources would decrease, thereby reducing the financial burden on insurers.

Arguments Against PAD

Due to the absolute finality of PAD, many raise objections. There is concern that administration of PAD can never be objective due to different doctor’s assessments of severity of illness. Furthermore, patients may request PAD during a period of particular weakness or vulnerability. Mentally ill individuals may seek PAD before they find a drug that works for them. In Oregon, a study found that PAD requesters had higher levels of depression, hopelessness, and dismissive attachment.[18] Further, it can be difficult for doctors to determine a patient’s eligibility for PAD. “Doctor shopping” describes the act of searching for a lenient doctor who will administer PAD.[19] Depending on multiple factors such as the details of PAD policy, accuracy of assessment by a doctor, or simply the occurrence of human error, it could be possible that someone who does not meet the requirements of PAD receives it. As discussed earlier, PAD presents an uncomfortable moral dilemma for some individuals, including doctors. The Hippocratic Oath insists physicians do no harm to patients, and many doctors assert that no medical condition warrants induced death. Moreover, the existence of PAD may put undue pressure on patients to request PAD to relieve their families of medical burden. PAD, often referred to as the ultimate demonstration of freedom of choice, may become an obligation for some. In addition, insurers control the approval of potentially expensive life-preserving treatments and the approval of assisted suicide. Financial motivation may play a large, and unwarranted, role in the decision to end a life.

Conclusion

The personal and emotional implications of PAD complicate the process of policy implementation. While some patients, families, and doctors are reluctant to support PAD, looking at states with PAD policies such as Oregon should reassure skeptics that many potential problems are not salient in reality. Because of the merit of many pro-PAD arguments, legislators should keep an open mind on PAD and recognize the potential benefits to sickly and elder populations.

Image: Opinions on PAD in the United States. Source: GallupImage: Opinions on PAD in the United States. Source: Gallup

Despite the controversy surrounding PAD, it is a politically popular end-of-life option among terminally ill patients that it is important to consider. Recently, it has been gaining traction among the American public, with nearly seven in 10 Americans saying they support some form of PAD in a 2015 poll.[20] When evaluating policy, PAD legislators should focus on resolving current issues related to inappropriate patient access. Specifically, policymakers should focus on cases where factors other than exercising personal autonomy drive a patient’s decision to seek PAD. This could be achieved by increasing screening to prevent patients who are motivated by financial concerns or by underlying mental health conditions from using PAD to end their lives. As the political forces driving PAD into the national conversation become stronger, it is worthwhile to consider how to bridge the gaps in current legislation.

Student Blog Disclaimer
  • The views expressed on the Student Blog are the author’s opinions and don’t necessarily represent the Penn Wharton Public Policy Initiative’s strategies, recommendations, or opinions.

References

   [1]https://www.nejm.org/doi/pdf/10.1056/NEJM199608293350912

  [2]https://www.ncbi.nlm.nih.gov/pubmed/26784764

   [3]https://journals.sagepub.com/doi/abs/10.1177/1049909107310141

   [4]https://blog.oup.com/2017/10/understanding-physician-assisted-death/

   [5]http://assets.press.princeton.edu/chapters/s8317.pdf

   [6]http://atulgawande.com/book/being-mortal/

   [7]https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/ DEATHWITHDIGNITYACT/Pages/faqs.aspx

   [8]https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/ DEATHWITHDIGNITYACT/Pages/faqs.aspx

   [9]https://lr.law.qut.edu.au/article/view/623

   [10]https://lr.law.qut.edu.au/article/view/623

   [11]www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEAR CH/DEATHWITHDIGNITYACT/Documents/year20.pdf

   [12]

https://www.nejm.org/doi/full/10.1056/NEJMp0809394

   [13]https://www.nejm.org/doi/full/10.1056/NEJM200002243420806

   [14]https://www.nejm.org/doi/full/10.1056/NEJM200002243420806

   [15]https://www.ncbi.nlm.nih.gov/pubmed/9450720/

   [16]https://www.kff.org/medicare/fact-sheet/10-faqs-medicares-role-in-end-of-life-care/

   [17]https://www.kff.org/medicare/fact-sheet/10-faqs-medicares-role-in-end-of-life-care/

   [18]https://www.sciencedirect.com/science/article/pii/S0885392414003984?via%3Dihub

   [19]https://academic.oup.com/bmb/article/123/1/69/3958775

   [20]https://academic.oup.com/bmb/article/123/1/69/3958775

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  • <h3>The Penn World Table</h3><p> The Penn World Table provides purchasing power parity and national income accounts converted to international prices for 189 countries/territories for some or all of the years 1950-2010.</p><p><a href="https://pwt.sas.upenn.edu/php_site/pwt71/pwt71_form.php" target="_blank">Quick link.</a> </p><p>See all <a href="/data-resources/">data and resources</a> »</p>
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  • <h3>The World Bank Data (U.S.)</h3><p><img width="130" height="118" alt="" src="/live/image/gid/4/width/130/height/118/484_world-bank-logo.rev.1407788945.jpg" class="lw_image lw_image484 lw_align_left" srcset="/live/image/scale/2x/gid/4/width/130/height/118/484_world-bank-logo.rev.1407788945.jpg 2x, /live/image/scale/3x/gid/4/width/130/height/118/484_world-bank-logo.rev.1407788945.jpg 3x" data-max-w="1406" data-max-h="1275"/>The <strong>World Bank</strong> provides World Development Indicators, Surveys, and data on Finances and Climate Change.</p><p> Quick link: <a href="http://data.worldbank.org/country/united-states" target="_blank">http://data.worldbank.org/country/united-states</a></p><p>See all <a href="/data-resources/">data and resources</a> »</p>
  • <h3>Congressional Budget Office</h3><p><img width="180" height="180" alt="" src="/live/image/gid/4/width/180/height/180/380_cbo-logo.rev.1406822035.jpg" class="lw_image lw_image380 lw_align_right" data-max-w="180" data-max-h="180"/>Since its founding in 1974, the Congressional Budget Office (CBO) has produced independent analyses of budgetary and economic issues to support the Congressional budget process.</p><p> The agency is strictly nonpartisan and conducts objective, impartial analysis, which is evident in each of the dozens of reports and hundreds of cost estimates that its economists and policy analysts produce each year. CBO does not make policy recommendations, and each report and cost estimate discloses the agency’s assumptions and methodologies. <strong>CBO provides budgetary and economic information in a variety of ways and at various points in the legislative process.</strong> Products include baseline budget projections and economic forecasts, analysis of the President’s budget, cost estimates, analysis of federal mandates, working papers, and more.</p><p> Quick link to Products page: <a href="http://www.cbo.gov/about/our-products" target="_blank">http://www.cbo.gov/about/our-products</a></p><p> Quick link to Topics: <a href="http://www.cbo.gov/topics" target="_blank">http://www.cbo.gov/topics</a></p><p>See all <a href="/data-resources/">data and resources</a> »</p>
  • <h3>Federal Aviation Administration: Accident & Incident Data</h3><p><img width="100" height="100" alt="" src="/live/image/gid/4/width/100/height/100/80_faa-logo.rev.1402681347.jpg" class="lw_image lw_image80 lw_align_left" srcset="/live/image/scale/2x/gid/4/width/100/height/100/80_faa-logo.rev.1402681347.jpg 2x, /live/image/scale/3x/gid/4/width/100/height/100/80_faa-logo.rev.1402681347.jpg 3x" data-max-w="550" data-max-h="550"/>The NTSB issues an accident report following each investigation. These reports are available online for reports issued since 1996, with older reports coming online soon. The reports listing is sortable by the event date, report date, city, and state.</p><p> Quick link: <a href="http://www.faa.gov/data_research/accident_incident/" target="_blank">http://www.faa.gov/data_research/accident_incident/</a></p><p>See all <a href="/data-resources/">data and resources</a> »</p>
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  • <h3>USDA Nutrition Assistance Data</h3><p><img width="180" height="124" alt="" src="/live/image/gid/4/width/180/height/124/485_usda_logo.rev.1407789238.jpg" class="lw_image lw_image485 lw_align_right" srcset="/live/image/scale/2x/gid/4/width/180/height/124/485_usda_logo.rev.1407789238.jpg 2x, /live/image/scale/3x/gid/4/width/180/height/124/485_usda_logo.rev.1407789238.jpg 3x" data-max-w="1233" data-max-h="850"/>Data and research regarding the following <strong>USDA Nutrition Assistance</strong> programs are available through this site:</p><ul><li>Supplemental Nutrition Assistance Program (SNAP) </li><li>Food Distribution Programs </li><li>School Meals </li><li>Women, Infants and Children </li></ul><p> Quick link: <a href="http://www.fns.usda.gov/data-and-statistics" target="_blank">http://www.fns.usda.gov/data-and-statistics</a></p><p>See all <a href="/data-resources/">data and resources</a> »</p>
  • <h3>Federal Reserve Economic Data (FRED®)</h3><p><strong><img width="180" height="79" alt="" src="/live/image/gid/4/width/180/height/79/481_fred-logo.rev.1407788243.jpg" class="lw_image lw_image481 lw_align_right" data-max-w="222" data-max-h="97"/>An online database consisting of more than 72,000 economic data time series from 54 national, international, public, and private sources.</strong> FRED®, created and maintained by Research Department at the Federal Reserve Bank of St. Louis, goes far beyond simply providing data: It combines data with a powerful mix of tools that help the user understand, interact with, display, and disseminate the data.</p><p> Quick link to data page: <a href="http://research.stlouisfed.org/fred2/tags/series" target="_blank">http://research.stlouisfed.org/fred2/tags/series</a></p><p>See all <a href="/data-resources/">data and resources</a> »</p>
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