Volume 39, Issue 3 , Pages 605-609, March 2010
Dying Tax Free: The Modern Advance Directive and Patients' Financial Values
Article Outline
Abstract
Advance directives are often used to help patients articulate their end-of-life treatment preferences and guide proxy decision makers in making health care decisions when patients cannot. This case study and commentary puts forth a situation in which a palliative care consultation team encountered a patient with an advance directive that instructed her proxy decision maker to consider estate tax implications when making end-of-life decisions. Following presentation of the case, the authors focus on two ethical issues: 1) the appropriateness of considering patients' financial goals and values in medical decision making and 2) whether certain kinds of patient values should be considered more or less relevant than others as reasons for expressed treatment preferences. Clinicians are encouraged to accept a wide range of patient values as relevant to the clinical decision-making process and to balance the influence of those values with more traditional notions of clinical harm and benefit.
Key Words: Advance directives, living wills, wills, advance care planning, ethics, clinical ethics, palliative care, decision making, patient values, terminal care
Introduction
Advance directives provide direction for future medical treatments when individuals no longer have decision-making capacity, providing patients the opportunity to indicate their preferences for specific life-sustaining interventions and to designate a surrogate decision maker.1 With the exception of one Letter to the Editor in 2002,2 we are unaware of any literature that addresses the use of advance directives for financial planning.
The palliative care team that one of the authors (G. R. L.) directs was recently consulted to assist a family with end-of-life decision making when the patient's advance directive referenced estate taxes as a reason behind certain treatment preferences. Although many ethical issues are raised by this case, this article focuses on two issues: 1) the appropriateness of considering patients' financial goals and values in medical decision making and 2) whether certain kinds of patient values should be considered more or less relevant than others as reasons for expressed treatment preferences.
Case Study
Mrs. L. was an 81-year-old female admitted to the hospital in septic shock. Her medical history was significant for morbid obesity and hypertension. Shortly after admission, she had a cardiopulmonary arrest, was intubated, and transferred to the intensive care unit. The patient remained unresponsive to verbal and tactile stimuli. An electroencephalography demonstrated diffuse slowing, consistent with moderate encephalopathy. The attending physician requested a palliative care consultation for goals of care.
The palliative care team reviewed the chart and noted the patient's advance directive. If determined to have a terminal condition, the patient's advance directive clearly stated that Mrs. L. would want life-sustaining treatment withdrawn—with one caveat. Before making a final decision, the document directed the health care proxy to “consider estate tax consequences.” Before the family conference, the estate planning attorney who drew up the advance directive was contacted and confirmed the intentions of the clause. He also stated that the opposite financial incentives would apply for the end of 2010.
In 2001, the United States Congress passed the Economic Growth and Tax Relief Reconciliation Act (EGTRRA).3 It included significant modifications to the then-existing estate tax rules. Specifically, it increased the size of the estate that is permitted to pass to heirs free of tax (i.e., “the estate tax exemption”). For instance, if Mrs. L. died in 2009, the estate would be required to pay taxes on any amount above $3,500,000. However, if her time of death were postponed until January 1, 2010, the estate would be passed to her heirs free from any estate taxes (Table 1). If her estate was valued at $5,000,000, her heirs' net gain could be more than $600,000.
Table 1. Changes in Estate Tax Exemptions Since 2001
| Year | Estate Tax Exemption |
|---|---|
| 2001 | $675,000 |
| 2002 | $1,000,000 |
| 2003 | $1,000,000 |
| 2004 | $1,500,000 |
| 2005 | $1,500,000 |
| 2006 | $2,000,000 |
| 2007 | $2,000,000 |
| 2008 | $2,000,000 |
| 2009 | $3,500,000 |
| 2010 | No federal estate tax |
| 2011 | $1,000,000 |
The team met with the family and a decision to withdraw life-sustaining treatment was made without any discussion of the economic implications. The patient died peacefully. When reviewing the case several weeks later, however, several team members were upset about the inclusion of a clause in an advance directive that encouraged consideration of financial goals when making treatment decisions. This raised the question of whether the team would have honored a decision to continue life-sustaining treatment into the new calendar year based on Mrs. L.'s wish to minimize her heirs' estate tax burden.
Analysis
Concern over finances has been thought to put patients at risk for hastened death. For example, a flurry of articles in the 1990s worried that patients were being encouraged to complete advance directives to lower their cost of care.4, 5 Similarly, concern over financial burden is included in the survey that Oregon distributes to patients participating in the Death with Dignity Act, with a small percentage of patients reporting that saving money was a consideration in ending their lives.6, 7 Although the number of patients citing this as a concern is very small, the phenomenon nonetheless warrants careful observation.
One reason for this concern can be explained via the lens of autonomy. If financial exigency results in spending down a patient's estate on end-of-life care or forcing patients and their families into significant financial debt to pay for end-of-life care, and this financial pressure is so great that it overtakes other values and goals the patient may have at the end of life, such financial pressure could be coercive, violating the patient's autonomy. If this is the case, the salient issue is not money but coercion. Although this is an important consideration, there was no evidence of coercion in the case of Mrs. L.
Analysis that focuses on requests for “inappropriate” treatment also seems to miss the mark in this case. Many of the landmark articles on such requests that would appear to provide guidance in this case focus on the appropriateness of interventions themselves, not on appropriate or inappropriate reasons for such interventions.8, 9, 10
Mrs. L.'s request also is not adequately addressed via the concept of futility. Whether quantitative or qualitative, futility focuses on the outcomes of treatment.11, 12 Such outcomes are not in question in this case. Patients are frequently kept alive via life-sustaining treatment for varying periods of time for any number of reasons. For example, many argue that requests to maintain life-sustaining treatment so that family members who are far away can return to “say goodbye” to the patient before treatment is discontinued should be honored, even if the patient lacks consciousness.13, 14 Treatment withdrawal is also sometimes delayed to facilitate organ donation. The outcome in this case would be identical: The patient is kept alive for a longer—but not indefinite—period of time so that a stated goal of the patient can be achieved.
Bioethics has largely treated judgment of a patient's reasons for health care decisions as off-limits. While this was a case of surrogate decision making, the patient's wishes were clear and a request to continue treatment would have been in accord with those wishes. The doctrine of substituted judgment would have been honored. Absent evidence of coercion, and given the focus of inappropriateness and futility on interventions and outcomes, what is it that makes clinicians uncomfortable with this case?
We believe that this case offers the opportunity to ask a different kind of question: Is there something unethical about the use of financial values per se in end-of-life decision making? That is, does the concern arise out of the patient using different kinds of values than one normally does in forming treatment preferences (i.e., commitment to her financial heirs vs. commitment to her faith tradition)? Are there, then, appropriate and inappropriate—or, perhaps, more appropriate and less appropriate—kinds of values that should guide patient treatment preferences?
This raises the larger question of whether health care providers should—or, even, can—evaluate which kinds of patient values are appropriate to use in medical decision making. The literature is replete with evidence that cultural and religious values are accorded great respect in medical decision making—especially at the end of life.15, 16 Why would these kinds of patient values be considered valid and appropriate reasons for extending life-sustaining treatment but financial values (which could also be construed as values about the family) considered inappropriate?
Patients frequently seek assistance making health care choices based—at least in part—on how they choose to spend their money and that assistance is routinely provided. For example, a patient without prescription drug coverage may request a prescription for a slightly less effective, but generic, drug in lieu of the optimal but brand-name alternative. Physicians routinely honor such requests. (Indeed, some have argued that justice demands discussing generic options with patients17). Similarly, patients frequently ask for referrals to specialists who are “in-network” providers for their insurance plans, even if there is a superior physician nearby who is not in network. Physicians regularly help patients find in-network providers in such cases. Including patients' financial values in medical decision making is an everyday occurrence.
Although it may appear that the cause for concern is that the benefits in question are not directly for the patient, but for the surrogate, providers routinely offer care for the benefit of third parties with little controversy (note again the example above regarding a loved one being able to say “goodbye”). Similarly, in the other examples above, patients may be seeking generic drugs or in-network providers so that their financial resources can be devoted to others: college tuition for children, assisted-living costs for parents, or a birthday gift for a spouse. It is not at all unusual for patients to make health care decisions for themselves using financial values in a way that seeks to benefit others. Indeed, focusing on secondary gain in this case risks not acknowledging that there is also primary gain. That is, honoring the patient's wishes benefits the patient in addition to whatever heirs stand to inherit money from the patient's estate. It treats the patient with respect and recognizes the value of her autonomy as expressed in the advance directive.
Perhaps, however, the health care decisions in this case—involving life-sustaining therapies—are different than choosing generic drugs or in-network providers. The concern could be over the significant harm—and risk of further harm—accompanying decisions about life-sustaining therapies. Tracheotomy and placement of a gastrostomy tube were interventions under consideration for Mrs. L. that carry a certain degree of harm and risk for future harms. In patients with reversible conditions, these harms are justified by the potential benefits of recovery of function and restoration of health. In patients who will not recover, other benefits need to balance these harms to ethically justify the interventions. However, while a harm/benefit analysis is an important component of any moral decision-making process, keeping patients alive for a limited amount of time seems to pass such analysis just fine when other reasons for doing so—religious, cultural, or family integrity—are given. This is true despite the fact that none of these reasons are explicitly linked to medical benefits for the patient.
Recommendations
Patient preferences can and should be guided by the values most important to the patient. There is nothing intrinsically unethical about including financial values in an advance directive. Medical interventions, however, are guided by a combination of patient values and clinical indications—indications often guided by a commitment to nonmaleficence (do no harm). As such, concern regarding financial benefits and burdens needs to be balanced with the overall harms and benefits resulting to the patient for each intervention under consideration. Requests for interventions that cause medical harm that cannot be counterbalanced by overall benefit should not be honored. Requests for interventions that carry the risk of medical harm and the potential for benefit should be carefully evaluated and decisions made in concert with patients, families, and the health care team to honor the doctrine of informed consent. Did Mrs. L.'s estate planning attorney have the clinical knowledge necessary to facilitate informed consent regarding the risks and benefits of prolonging the dying process? Initiation or continuation of life-sustaining therapies that are burdensome to patients—and almost all are to some degree—needs to be evaluated in light of overall benefit to patients and informed consent must be ensured.
The distinction between burden and harm, and the balance between either and benefits (medical and otherwise), is sometimes part of the art (rather than the science) of medicine. Honoring patient values can be construed as a benefit and one that may sufficiently balance the minimal burdens of some interventions in some situations. Health care providers do not, however, have an obligation to honor requests for interventions that are likely to produce significant harm simply because such requests are consistent with patient values—regardless of the type of patient value. Although it is true that patients may refuse medical intervention on almost any grounds, requests for intervention—whether newly initiated or continued interventions—need to reflect a balance of patient preference and clinical indications. However, provided both are present, the type of patient value—moral, religious, financial, or otherwise—is not ethically relevant. Health care providers are not in a position to judge which patient values should count as sufficient reasons for declared treatment preferences.
Conclusion
Health care providers should prepare themselves for the possibility that advance directives may increasingly contain requests explicitly driven by financial values. Provided evidence of decision-making capacity and the absence of coercion at the time the document was drafted, preferences guided by such values should be considered relevant and included in the end-of-life decision-making process in the same way moral or religious values may be considered: as part of, but not the entire, decision-making equation.
References
- . The history of advance directives. J Gerontol Nurs. 2003;29:4–14
- . The new year, death, and taxes. Lancet. 2002;359:266
- Economic Growth and Tax Relief Reconciliation Act of 2001, Pub. L. No. 107-16, 115 Stat. 38; June 7, 2001.
- . The purpose of advance medical planning—autonomy for patients or limitation of care?. N Engl J Med. 1996;335:741–743
- . Controlling the costs of healthcare for the elderly—fair means and foul. N Engl J Med. 1996;335:743–746
- Oregon Revised Statues 127.800-127.897.
- . Summary of Oregon's death with dignity act 2008. Available from http://oregon.gov/DHS/ph/pas/ar-index.shtmlAccessed June 1, 2009
- . When patients request specific interventions: defining the limits of the physician's obligation. N Engl J Med. 1986;315:1347–1351
- . Defining limits of care in terminally ill patients. BMJ. 2007;334:239–241
- . Dealing with demands for inappropriate treatment. Can Med Assoc J. 1998;159:817–821
- . Medical futility: its meaning and ethical implications. Ann Intern Med. 1990;112:949–954
- . A broader look at medical futility. Theor Med Bioeth. 1998;19:383–400
- . Withdrawal of ventilatory support from the dying adult patient. J Support Oncol. 2004;2:283–288
- . Surrogate decision making: reconciling ethical theory and clinical practice. Ann Intern Med. 2008;149:48–53
- . Religious belief and surrogate medical decision making. J Clin Ethics. 2009;20:192–200
- . Dying patients in the intensive care unit: forgoing treatment, maintaining care. Ann Intern Med. 2000;133:886–893
- Patient, physician, pharmacy, and pharmacy benefit design factors related to generic medication use. J Gen Intern Med. 2007;22:1298–1304
Creation of this manuscript was not supported by external funding.
PII: S0885-3924(10)00100-4
doi:10.1016/j.jpainsymman.2009.12.003
© 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Volume 39, Issue 3 , Pages 605-609, March 2010
