Abstract
Objectives:
Understanding the concerns that motivate requests for assisted dying (euthanasia or assisted suicide) is essential for understanding these practices. Our objective was to determine whether there are significant trends in end-of-life concerns cited in requests for physician-assisted suicide (PAS) in Oregon and Washington.
Methods:
We estimated regressions using data on reported end-of-life concerns (autonomy, enjoyment, dignity, control, burden, pain, and finance) taken from annual state reports and which covered 6853 deaths. We pooled the data for our two states and estimated the trend for each end-of-life concern. We added controls for demographic variables, separated time trends for each state, and added other tests for robustness.
Results:
Our estimates suggested no significant trend for autonomy or enjoyment. The common trend was negative and statistically significant for dignity and control, but control was not significant for Washington. Trends were significantly positive for burden, pain, and finance, but finance was not significant for Washington.
Conclusions:
There have been significant trends in reported end-of-life concerns that motivate requests for PAS in Oregon and Washington. The increase in perceived burdensomeness as a motivation for PAS adds weight to the argument that changing the law can have an adverse effect on the self-perception of those who receive care. Qualitative research has identified adverse impacts of assisted dying on pain management. Our findings suggest a significant increase in concerns about inadequate pain control since the legalization of PAS. We found no evidence that the Patient Protection and Affordable Care Act has reduced the proportion of people seeking death because of concerns about the cost of their care.
Key Words: assisted dying, assisted suicide, end-of-life care
Key Points
There are significant trends in some end-of-life concerns that motivate requests for physician-assisted suicide (PAS) in the United States.
Concerns about dignity and control have decreased since PAS legalization, whereas those related to burden, pain, and finance have increased.
The study raises the question of how to address concerns about pain at the end of life more effectively in contexts in which PAS is legal.
These findings add weight to public policy arguments that legalization may lead to people increasingly seeking death due to a perceived sense of “being a burden.”
Research across multiple jurisdictions (we use the term “jurisdictions” rather than “countries” because, although assisted dying has sometimes been legalized at a national level, for example, in the Netherlands, in the federal countries of the United States and Australia, it has been legalized state by state, beginning with Oregon in the United States in 1997 and with Victoria in Australia in 2019) has shown that where the practice of assisted dying, that is, euthanasia or assisted suicide, has been legalized, it also has expanded both in numbers and in eligibility criteria.1–4 There have been demonstrable increases in self-initiated deaths with no reduction in conventional (unassisted) suicide.5–9 Although previous studies have examined the extent and impact of these practices, there is only limited research examining the motivation of patients who have sought death under these laws, and still less on how such motivations have changed over time.
Most jurisdictions where assisted dying is legal have medical eligibility criteria. Nevertheless, the satisfaction of eligibility criteria does not itself indicate why eligible patients request assisted dying. All of the people with the same diagnosis will not request such a death, and those who do will do so for different reasons.
The question then arises as to whether, as the practice has been “normalized,” there are shifts in the motivation for seeking death under these laws.9 Do fewer people use these laws because of concerns about physical symptoms and more seek death for social reasons? Do improvements in palliative care reduce concerns about physical pain?10
Research on end-of-life concerns that motivate people to seek euthanasia or assisted suicide have mostly been by surveys or interviews carried out at a single time point.11–17 One useful source of data on these concerns over multiple time points is from official reports. Analysis of such reports found that of 16 jurisdictions that reported on assisted deaths, 3 listed the frequency of specific end-of-life concerns: Oregon, Washington, and Canada.18 Of these, Oregon had reported 27 years of data, and Washington 15 years, but Canada had only 5 years of data. Furthermore, the law in Washington was modeled very closely on that of Oregon. It was thus possible to consider data on end-of-life concerns of people seeking physician-assisted suicide (PAS) in these two American states across a significant period of time.
The aim of our study was to analyze data from Oregon and Washington to determine whether end-of-life concerns that had reportedly motivated requests for PAS in these states had changed significantly over time and, if so, to consider how these trends may be understood.
Data from the official reports of PAS in Oregon have provided the basis for a number of studies.19–26 No previous study has focused in depth on the data on end-of-life concerns in these reports, however. One paper on 20 years of Oregon data stated only that reported concerns remained similar between decades.23 Another, drawing on 25 years of Oregon data, noted increases in financial concerns and increases in fear of being a burden on others.24 That paper, however, did not provide a systematic analysis of all end-of-life concerns, formally test for statistical significance, or identify demographic covariates. We have provided the first systematic statistical analysis of data on the end-of-life concerns of patients requesting PAS in these two US states.
Methods
We used annual data on the numbers of people dying under a death with dignity act, on the numbers reporting each end-of-life concern, and on percentages in each demographic category from the Death with Dignity Annual Reports published by the Oregon Health Authority and Washington State Department of Health.
Data were available for Oregon from 1998 to 2024 and for Washington from 2009 to 2023, although Oregon only started reporting data on concerns about loss of dignity from 2003. As reports from some deaths taking place in the relevant year are incomplete when the Oregon report for that year is published, we updated figures using the report from the following year. Obviously, this is not possible for the final year of data. The reports covered a total of 6853 deaths, 3243 in Oregon, and 3610 in Washington.
We estimated logistic regressions using each end-of-life concern as a separate dependent variable, pooling the data for the two states. The regressions are grouped by the annual number of people dying under the acts in each state and who responded to the question about end-of-life concerns.
In each regression, we included a linear time trend variable, trend, taking the value of 1 for the first year in which assisted suicide was legalized in that state. The estimated coefficient for this variable was our key parameter of interest. A positive value indicates that an end-of-life concern increases in importance over time, whereas a negative value indicates the concern decreases in importance.
We extended our basic model by estimating regressions including several control variables measuring different characteristics of those dying under a death with dignity act as follows:
Female: percentage of those dying under the act who were female
White: percentage of those dying under the act who were White
Age 65 plus: percentage of those dying under the act who were older than 65 years
Married: percentage of those dying under the act who were married
College: percentage of those dying under the act who had at least some college education
Cancer: percentage of those dying under the act whose underlying illness was cancer
Hospice: percentage of those dying under the act who were enrolled in hospice care
Finally, we included a dummy variable, pandemic, for the years 2020 and 2021 to control for the possible impact of the coronavirus disease 2019 pandemic and associated lockdowns.
We also considered a series of alternative specifications aimed at exploring the robustness of our baseline model. These included allowing for separate time trends for each of the two states, allowing for nonlinear trends, and using ordinary least squares rather than logistic regression. Further details of our empirical approach are provided in the Appendix (http://links.lww.com/SMJ/A533).
Annual data on the numbers of people dying under a death with dignity act, on the numbers reporting each end-of-life concern, and on the percentages in each demographic category are taken from the Death with Dignity Annual Reports published by the Oregon Health Authority and Washington State Department of Health.
RESULTS
Reports from Oregon and Washington listed end-of-life concerns, as reported by clinicians, that motivated requests for PAS under seven headings:
Losing autonomy
Less able to engage in activities, making life enjoyable
Loss of dignity
Losing control of bodily functions
Burden on family, friends/caregivers
Inadequate pain control
Financial implications of treatment
We cited these concerns as autonomy, enjoyment, dignity, control, burden, pain, and finance. The wording of the questions in each state is given in the Appendix (http://links.lww.com/SMJ/A533).
We report descriptive statistics for each of our variables in Table 1. Most end-of-life concerns were cited by a similar percentage in each state. The exceptions were burden, pain, and finance, each of which was more commonly cited in Washington.
TABLE 1.
Summary statistics
| Oregon | Washington | |||
|---|---|---|---|---|
| N | Mean (SD) | N | Mean (SD) | |
| End-of-life concerns, % | ||||
| Autonomy | 27 | 90.0 (5.8) | 15 | 87.8 (4.9) |
| Enjoyment | 27 | 88.0 (6.2) | 15 | 86.8 (3.5) |
| Dignity | 22 | 74.2 (9.0) | 15 | 71.8 (7.7) |
| Control | 27 | 48.5 (11.0) | 15 | 49.0 (4.4) |
| Burden | 27 | 42.5 (12.3) | 15 | 51.3 (11.3) |
| Pain | 27 | 26.0 (9.7) | 15 | 38.0 (5.1) |
| Finance | 27 | 4.2 (2.5) | 15 | 7.6 (3.5) |
| No. deaths | 27 | 120.1 (109.2) | 15 | 240.7 (135.2) |
| Covariates, % | ||||
| Female | 27 | 47.4 (7.3) | 15 | 47.8 (3.3) |
| White | 27 | 96.5 (2.0) | 15 | 95.0 (1.7) |
| Age ≥65 y | 27 | 73.1 (8.5) | 15 | 74.8 (5.7) |
| Married | 27 | 45.1 (9.0) | 15 | 46.7 (2.6) |
| College | 27 | 70.2 (9.4) | 15 | 73.5 (5.9) |
| Cancer | 27 | 75.1 (9.1) | 15 | 74.9 (2.3) |
| Hospice | 27 | 89.4 (6.6) | 15 | 87.3 (7.8) |
| Pandemic | 27 | 0.07 (0.27) | 15 | 0.13 (0.35) |
Reported statistics are means and standard deviations (SDs) of the annual values. All covariates except Pandemic are measured in percentages. Because these are based on the annual values, and numbers generally increase over time, the means do not correspond to the mean value reporting each concern over the whole period. N relates to the number of state-years of data rather than the total number of observations. Respondents could indicate more than one end-of-life concern. Numbers of deaths are the annual reported deaths under the auspices of a death with dignity act and for which the participant responded to the questions regarding end-of-life concerns. Definitions and sources for each variable are provided in the Appendix (http://links.lww.com/SMJ/A533).
Women made up slightly less than 50% of deaths from PAS. This was noteworthy given that men are far more likely to die from conventional (unassisted) suicide, especially in the older population.27 In both states, 95% or more of those dying by PAS were White, and almost three-fourths were older than 65 years. A higher proportion of those dying by PAS in Washington reported at least some college education relative to Oregon.
In Supplemental Figure 1, (http://links.lww.com/SMJ/A534) we display trends in the percentages citing each end-of-life concern for each state. Dignity and control appeared to trend down over time, whereas burden, pain, and finance generally increased. Patterns for autonomy and enjoyment were less clear, although autonomy showed a moderate downward trend for Washington.
These patterns are broadly reflected in our regression analysis. We report the estimates of Equation 1 from the Appendix, (http://links.lww.com/SMJ/A533) without covariates in Table 2 and the estimates of Equation 2 from the Appendix with covariates in Table 3. Our estimates suggested no significant trend for enjoyment. The trend was negative and statistically significant at the 1% level for autonomy, dignity, and control. In contrast, burden, pain, and finance each show a significantly positive trend. When we included the covariates, the magnitude of the time trend coefficients changed somewhat and that for autonomy was no longer significant.
TABLE 2.
Trends in end-of-life concerns in Oregon and Washington: Common trends.
| Autonomy | Enjoyment | Dignity | Control | Burden | Pain | Finance | |
|---|---|---|---|---|---|---|---|
| Trend | −0.0247*** (0.00868) | −0.00819 (0.00815) | −0.0558*** (0.00618) | −0.0164*** (0.00474) | 0.0178*** (0.00472) | 0.0287*** (0.00532) | 0.0447*** (0.0104) |
| N | 6553 | 6553 | 6428 | 6553 | 6553 | 6553 | 6553 |
Estimates are coefficients from logistic regressions grouped by annual, state-level populations and with Huber-White robust standard errors in parentheses. All models included a state-dummy variable for Washington.
P<0.1;
P<0.05;
P<0.01.
TABLE 3.
Trends in end-of-life concerns in Oregon and Washington: Common trends and covariates.
| Autonomy | Enjoyment | Dignity | Control | Burden | Pain | Finance | |
|---|---|---|---|---|---|---|---|
| Trend | −0.000132 (0.0205) | 0.00173 (0.0191) | −0.0878*** (0.0174) | −0.0270** (0.0112) | 0.0353*** (0.0117) | 0.0596*** (0.0136) | 0.0677*** (0.0251) |
| Female | 0.0243* (0.0127) | 0.0246** (0.0119) | −0.00407 (0.0102) | −0.00180 (0.00700) | 0.00999 (0.00742) | 0.00225 (0.00827) | 0.00938 (0.0156) |
| White | 0.0260 (0.0307) | 0.0223 (0.0278) | −0.0399* (0.0206) | −0.0257 (0.0179) | −0.00337 (0.0181) | −0.0215 (0.0196) | 0.0717** (0.0363) |
| Age ≥65 y | −0.0211 (0.0134) | −0.0127 (0.0130) | 0.0111 (0.00984) | −0.00298 (0.00728) | −0.0166** (0.00746) | −0.0185** (0.00819) | −0.0119 (0.0165) |
| Married | 0.0164 (0.0169) | 0.00631 (0.0160) | −0.00366 (0.0158) | 0.00588 (0.00844) | 0.0241** (0.00960) | 0.00233 (0.0103) | 0.0210 (0.0203) |
| College | 0.000681 (0.0107) | 0.0170* (0.0103) | 0.0160* (0.00882) | −0.00580 (0.00654) | 0.0244*** (0.00671) | −0.00449 (0.00739) | −0.0156 (0.0142) |
| Cancer | −0.00437 (0.0102) | −0.00518 (0.00980) | −0.00880 (0.00734) | −0.0120** (0.00604) | 0.00170 (0.00611) | 0.0159** (0.00693) | −0.0273** (0.0135) |
| Hospice | −0.00647 (0.00844) | −0.00939 (0.00776) | −0.00914 (0.00676) | 0.000623 (0.00523) | −0.00429 (0.00538) | −0.0105* (0.00569) | −0.00746 (0.0104) |
| Pandemic | 0.315** (0.123) | 0.321*** (0.119) | 0.274*** (0.0876) | −0.000342 (0.0730) | 0.136* (0.0749) | 0.0497 (0.0781) | −0.430*** (0.161) |
| N | 6553 | 6553 | 6428 | 6553 | 6553 | 6553 | 6553 |
Estimates are coefficients from logistic regressions grouped by annual, state-level populations and with Huber-White robust standard errors in parentheses. All models included a state-dummy variable for Washington.
P<0.1;
P<0.05;
P<0.01.
Coefficients reported in the tables represent the change in the log odds of variables. From these, the odds ratios can be calculated. For example, controlling for other variables, the odds of burden being reported as an end-of-life concern increased by 3.6% on average for each year since legalization.
In Table 4, we report estimates of our trend variables for all specifications. Full results are reported in the Appendix, (http://links.lww.com/SMJ/A533). When we allowed the time trend to vary by state, we saw some divergent patterns for autonomy, enjoyment, control, and finance. We saw more robust results for dignity, where estimates were significantly negative for both states, and burden and pain showed significant upward trends in both states.
TABLE 4.
Summary of trends in end-of-life concerns for different specifications.
| Autonomy | Enjoyment | Dignity | Control | Burden | Pain | Finance | |
|---|---|---|---|---|---|---|---|
| No covariates | |||||||
| Trend | −0.0247*** (0.00868) | −0.00819 (0.00815) | −0.0558*** (0.00618) | −0.0164*** (0.00474) | 0.0178*** (0.00472) | 0.0287*** (0.00532) | 0.0447*** (0.0104) |
| With covariates | |||||||
| Trend | −0.000132 (0.0205) | 0.00173 (0.0191) | −0.0878*** (0.0174) | −0.0270** (0.0112) | 0.0353*** (0.0117) | 0.0596*** (0.0136) | 0.0677*** (0.0251) |
| Separate trends with covariates | |||||||
| Trend Oregon | 0.0134 (0.0182) | 0.0124 (0.0176) | −0.0931*** (0.0204) | −0.0329*** (0.0117) | 0.0333*** (0.0120) | 0.0575*** (0.0144) | 0.0799*** (0.0289) |
| Trend Washington | −0.0616** (0.0248) | −0.0500** (0.0245) | −0.0833*** (0.0194) | −0.00272 (0.0159) | 0.0425*** (0.0159) | 0.0654*** (0.0170) | 0.0455 (0.0345) |
| OLS | |||||||
| Trend | −0.0391 (0.300) | 0.0150 (0.196) | −1.695*** (0.510) | −0.670 (0.464) | 0.773** (0.366) | 1.158*** (0.358) | 0.325*** (0.108) |
| Excluding Oregon final year | |||||||
| Trend | 0.00404 (0.0206) | 0.00322 (0.0193) | −0.0829*** (0.0188) | −0.0255** (0.0113) | 0.0326*** (0.0119) | 0.0617*** (0.0142) | 0.0753*** (0.0265) |
| Quadratic trends | |||||||
| Trend | −0.0606* (0.0365) | −0.0341 (0.0360) | −0.0851*** (0.0281) | −0.0700*** (0.0230) | 0.0628*** (0.0230) | 0.0406* (0.0246) | 0.0411 (0.0469) |
| Trend squared | 0.00232* (0.00119) | 0.00138 (0.00118) | −0.000109 (0.000900) | 0.00165** (0.000773) | −0.00106 (0.000769) | 0.000755 (0.000832) | 0.00106 (0.00155) |
OLS, Ordinary Least Squares
Unless stated otherwise, estimates are coefficients from logistic regressions grouped by annual, state-level populations, including covariates listed in Table 3 and with Huber-White robust standard errors in parentheses. All models included a state-dummy variable for Washington. The number of observations is as listed in the tables of full specifications in the Appendix (http://links.lww.com/SMJ/A533).
P<0.1;
P<0.05;
P<0.01.
Using ordinary least squares rather than logistic regression and excluding the final year of data from Oregon made little difference in the significance and direction of our estimates. There was some evidence of a nonlinear effect in the case of control. The quadratic term was positive and somewhat significant, suggesting that the decreasing trend leveled off over time.
In summary, our results provided strong evidence that from when PAS was first legalized, concerns over loss of dignity had become less prevalent among those dying from PAS. In contrast, concerns about being a burden on family and friends/caregivers and about inadequate pain control had become more common over time.
Our results also suggest that concern about being a burden on family and friends/caregivers was more common among those who had a college education and among those who were married. There was also evidence that concern about losing control of bodily functions was more common among noncancer patients.
DISCUSSION
The most commonly cited reasons for seeking death by PAS in Oregon and Washington were losing autonomy and being less able to engage in activities that make life enjoyable. These concerns showed no significant change over time.
The primary reasons that people in Oregon and Washington sought assisted suicide are thus not related to distressing symptoms such as pain and loss of bodily control or to financial worries but to concerns about personal autonomy and subjective enjoyment. Other research has shown that assisted dying was used more by people from demographics that were accustomed to having control over decisions and who had the financial means to engage in enjoyable activities.28–30 What was added by the present research is evidence that the dominance of concerns about autonomy and enjoyment in life has been robust over time.
Although concerns about loss of dignity remained the third most common reason cited, this concern has been cited less frequently over time. The reasons for this trend were not clear. The concept of dignity is disputed and is invoked on both sides of the debate over assisted dying.31,32 The term “dignity” was influential in the political movement to introduce the practice, as evident from the name of the law in Oregon and in Washington: the Dying with Dignity Act.
At the same time, people within the palliative care movement have increasingly taken up the language of dignity. This was in part due to the influence of dignity therapy.33 It may have been that more patients came to see palliative care as enhancing dignity at the end of life and thus did not believe that assisted suicide was needed to maintain their dignity. In any case, this study has presented new evidence that concerns about dignity have been invoked significantly less frequently as a motivation for PAS in the time since legalization. Further research is needed to uncover the reasons for this.
Concern about losing control of bodily functions showed a significant decline when measured by the common trend, but was less significant when covariates were included, and it did not decline significantly in Washington. Furthermore, the result was not robust to allowing for nonlinear trends or using ordinary least squares.
In contrast, there was much clearer evidence that concern about becoming a burden on family, friends, or caregivers had increased significantly over time. This trend was significant in both Oregon and Washington, with and without covariates, and also in different empirical specifications. Arguably, there was a problem at the root of the identification of this end-of-life concern. It seemed to frame perceived burdensomeness as a valid reason for seeking death rather than as an interpersonal construct with a known link to suicidality.34,35 The finding that perceived burdensomeness had become more frequently cited as a motivation for PAS was consistent with the claim that changing the law could have an adverse effect on the social perception and the self-perception of those who received care.36,37 Previous research had noted an apparent increase in people seeking death by PAS in Oregon, in part because of feeling like a burden to others.24 The present study demonstrates that this increase was statistically significant, that it was found in two different states, taken together or separately, and was robust to several statistical tests.
These results also showed increases in people citing inadequate pain control as a reason for seeking death. These increases were significant both in Oregon and Washington, both with and without covariates, and using ordinary least squares, and the quadratic trend did not indicate any flattening off over time. This trend may have indicated a decline in confidence in the availability or effectiveness of pain management. The official reports from Oregon and Washington showed increased numbers of patients had been enrolled with a hospice since legalization, but such data provide no evidence of the quality of the palliative care services provided.
There is qualitative evidence from other jurisdictions indicating that the process of offering or delivering assisted suicide or euthanasia could have an adverse impact on pain management. This may be because “enquiries [about assisted dying] sometimes detracted from usual discussions of optimizing symptoms and quality of life”38 or because of a “conflict between maintaining medical assistance in dying eligibility and effective symptom control”.39,40 Our study has complemented this qualitative research by presenting quantitative evidence showing that concerns about inadequate pain control at the end of life have increased significantly since the legalization of PAS in Oregon and Washington.
Concerns over the financial implications of treatment are the least commonly cited motivation for seeking assisted suicide; however, this concern has increased significantly since legalization. When state time trends were considered separately, the increase in Washington was not significant once covariates were included. Nevertheless, the common trend was positive and was strongly significant for most of the measures used. There was no evidence of a decrease in concern about the cost of medical treatment associated with the Patient Protection and Affordable Care Act (PL-148). This may be because, although the Patient Protection and Affordable Care Act increased access to cancer care,41 the positive impact was limited to those younger than 65, whereas three-fourths of those using PAS were older than 65.42
These results are quantitative, and it is not possible to deduce ethical conclusions from them, either in relation to the legalization of PAS or in relation to its implementation. Nevertheless, the results do call attention to some important ethical issues. The increase in people citing the fear of being a burden as a motivation for hastening death raises real concerns. Such fears are in part formed by society, and the aim of legislative reform should be to help mitigate such fears, not to add to them or to give them lethal effect. Where assisted dying laws are in place, there is a clear need to consider the motivation of people seeking to end their lives in this way and to consider whether the request is due to fears or concerns that could be addressed in other ways. From an ethical perspective, a change in the law in relation to assisted suicide or euthanasia should not be regarded as resolving the ethical challenges of end-of-life care but as creating a new set of ethical challenges.
In relation to the limitations of this study, it also should be noted that these data on end-of-life concerns were recorded by clinicians rather than by those seeking death by PAS. There is evidence that proxy-reporting of the experience of end-of-life care can differ significantly from self-reporting.43 A study of the concerns expressed by patients seeking death by PAS in Oregon was concordant with official reports in relation to high levels of concern expressed over autonomy, dignity, and control of bodily functions, and much lower levels of concern expressed about the financial costs of treatment. The patient-reported data expressed higher rates of concern than official reports in relation to future pain and the feeling of being a burden to others, however.15 The results of the present study thus showed significant increases in concerns (pain and burden), which are more prone to be underestimated by clinicians. The true figure for these concerns may well be higher.
Overall, there have been some significant trends in reported end-of-life concerns that motivate requests for death in Oregon and Washington since the legalization of PAS. Although some previous research has raised these issues from a qualitative point of view, our paper is the first to provide more formal empirical confirmation of statistically significant trends in the reported end-of-life concerns of those who die by PAS.
Supplementary Material
Footnotes
The authors did not report any financial relationships or conflicts of interest.
Supplemental digital content is available for this article. Direct URL citations are provided in the HTML and PDF versions of this article on the journal's website, sma.org/smj.
Contributor Information
David Albert Jones, Email: David.Jones@stmarys.ac.uk.
David Paton, Email: David.Paton@nottingham.ac.uk;david_j_paton@yahoo.co.uk.
Phoebe Rutaquio, Email: rutaquiophoebe@gmail.com.
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