By: Aaron Stephenson
I. INTRODUCTION
Upon receiving a terminal diagnosis, patients not only contemplate their own longevity but also grapple with fears of impending suffering and the dread of dying in an ICU, unable to share final goodbyes with loved ones.[1] The technological health system in the United States fails to treat—the human aspect of—terminal illness.[2] Conducting an end-of-life conversation with a terminally ill patient eases a patient’s fears; however, the current mechanisms advancing end-of-life conversations fail to meaningfully increase the frequency of this essential practice.[3] While the mechanisms are largely inadequate, statutes enacted in Florida and New Jersey present the best option to increase the frequency of adequate end-of-life conversations moving forward.
II. BACKGROUND
When terminally ill patients near the end of their life, most patients desire to have their physician discuss the options available in an end-of-life care plan.[4] Typically, to ease their fear of dying, these patients wish to discuss topics such as: their prognosis, the termination of aggressive treatment, pain minimization, and resuscitation status.[5] The topics patients wish to discuss bare titles such as palliative care plan, end-of-life care plan, and advance directives.[6] The medical community recognizes the practice of conducting the physician-patient discussion as an end-of-life conversation.[7] Conducting end-of-life (EOL) conversations produce many benefits including: mitigating patient pain, lowering patient stress, preventing costly invasive procedures, improving patient quality of life, maintaining patient autonomy, and creating a more well informed patient.[8] In short, conducting EOL conversations “ensur[e] patients’ wishes are respected in their final hours and that their quality of life is preserved in the dying process.”[9]
Despite the benefits, EOL conversations lack substantial frequency in medical practice. In just one study of Californians, eighty percent of respondents expressed preferences to have an EOL conversation with a physician while only seven percent of respondents actually have a conversation.[10] Further, of Americans enrolled in Medicare, “86 percent of Medicare enrollees would prefer to die at home . . . [while] 25 to 39 percent die in acute care facilities.”[11] Comparison of expressed wishes to the ultimate reality for Medicare enrollees, many Americans do not receive their wishes upon their death. Scholars in the medical community point out several explanations to account for the lack of frequency regarding EOL conversations. One explanation is “enormous psychological resistance for doctors to initiate EOL conversations.”[12] This explanation argues that a doctor may view a patient’s death as a failure and thus remove their human presence from a terminal prognosis.[13] Another explanation is the economic and educational barriers to increased EOL conversations. Until 2016, physicians did not receive a monetary reimbursement for conducting an EOL conversation.[14] Further, a combination of a dense curriculum, lack of funding, and lack of faculty trained in the matter prevent medical schools from educating future physicians on end-of-life conversations.[15] Ultimately, “physicians often are unsure how to initiate or proceed with [EOL] discussions, largely because medical education regarding EOL protocols is lacking.”[16]
Efforts to address EOL conversations at the federal level began with the proposition of the Life Sustaining Treatment Preferences Act of 2008.[17] The bill sought to “provide for coverage under the Medicare Program for consultations regarding orders for life sustaining treatment.”[18] The bill failed to garner support but found revival as a subsection under the Affordable Health Care Act.[19] However, the subsection was removed from the bill because some members “were concerned end-of-life conversations would persuade patients to sign end-of-life directives they would not otherwise sign and ‘create a slippery slope for a more permissive environment for euthanasia, mercy-killing and physician-assisted suicide.”[20] After the Congressional failure, the Centers for Medicare & Medicaid Services (CMS) announced a provision to fund EOL conversations through Medicare.[21] The proposed CMS regulation took effect at the start of 2016 and provided physicians reimbursements for voluntary EOL conversations.[22] The final rule demonstrates governmental recognition of EOL conversation benefits; however, the rule fell short by declining to enact a national coverage, resulting in coverage disparities across different communities.[23]
III. ANALYSIS
In addition to federal solutions, a limited number of state governments also implemented policies that address the low frequency of EOL conversations. While New York, California, Florida, and New Jersey have enacted statutes focusing on either or both information and education, state legislatures have not addressed the financial constraints that impact the infrequency of EOL conversations.[24]
New York adopted the Palliative Care Information Act in 2010.[25] The act requires attending health care practitioners to offer information and counseling to terminally ill patients, “regarding palliative care and end-of-life options appropriate to the patient, including but not limited to: the range of options appropriate to the patient; the prognosis, risks and benefits of the various options; and the patient’s legal rights to comprehensive pain and symptom management at the end of life.”[26] The statute allows for patients to refuse the discussion and enables for the attending health care practitioner to opt out of conducting the discussion by arranging for another healthcare provider to conduct the discussion with the patient.[27]
The California legislature passed the Terminal Patients Right to Know End of Life Options Act in 2008.[28] The statute established that a terminally ill patient has a right to information and counseling regarding their end-of-life options.[29] Unlike the New York statute, where the care provider must offer information pertaining to end-of-life options to the patient, the California statute states that a health care provider must, “[u]pon the request of the patient . . . provide the patient . . . with comprehensive information and counseling regarding legal end-of-life care options.”[30] Similar to New York, the California statute also authorizes healthcare providers to opt out of participating in the required end-of-life discussion by arranging for another health care provider to conduct it.[31]
New Jersey adopted two different statutes, both in 2020, addressing EOL conversations. The first requires the New Jersey Commissioner of Health to “establish a public awareness campaign to foster community-wide discussions and to promote early conversations about advance care planning and patient preferences to improve decision-making in relation to end-of-life care.”[32] The second statute mandates assisted living facility, dementia care home, nursing home, and hospital professional staff conduct annual training on advanced care planning and end of life care.[33]As the second New Jersey statute focused on increasing current medical professional’s knowledge of EOL care, a Florida statute aims to create new medical professionals trained in EOL care.[34] In 2015, Florida enacted a statute urging medical education institutions to adopt advanced care planning and palliative care topics into their curriculums.[35] In enacting this statue, the Florida legislature emphasized the urgent need for health professionals to expand their knowledge on end-of-life care.[36] In comparison, the New York and California statutes do not include provisions for education while the New Jersey and Florida statutes do.
Adopting measures such as encouraging medical education institutions to educate on EOL care, as done in Florida, and mandating annual EOL care training, as done in New Jersey, present the strongest approach moving forward in order to address the infrequency of adequate EOL conversations. These approaches provide more benefit because educating medical professionals on the topic will foster valuable EOL conversations and will prevent unhelpful EOL discussions which can result from the mandating disclosure approach taken by New York and California.[37] Ultimately, physicians must expand their knowledge on the practice.[38] Only eighteen percent of medical students and residents have received formal education on end-of-life care with forty percent admitting they felt unprepared to discuss a patient’s fears in the dying process.[39] Encouraging medical education institutions to place higher importance on end-of-life care in the curriculum would decrease the unpreparedness seen in medical professionals because “‘a significant amount of learning can occur when an end-of-life experience takes place under the direction of a faculty member.’”[40] In seeking to increase health professionals knowledge of EOL care, the Florida and New Jersey statutes align with fulfilling the need to educate health professionals on EOL care.
While the statutes that require physicians to disclose end-of-life information to patients seek to increase the frequency of EOL conversations, they fail to ensure that health providers conduct quality EOL conversations. When the New York statute passed, Dr. Diane E Meier, a palliative care expert at the Mount Sinai School of Medicine, expressed frustration with the statute because it did not enable health providers to gain the skills needed to conduct beneficial EOL conversations.[41] Dr. Meier stated, “Doctors need to know how to . . . initiate conversations with patients and/or family members, discuss what to expect in the future and the pros and cons of alternative care options, and know how to provide support as a patient’s illness progresses.”[42] Simply put, even if an EOL conversation occurs, not having trained professionals could, “result in suboptimal care, and patients and their families may be subjected to undue mental or physical anguish.” [43] The Florida and New Jersey statutes include provisions on increasing EOL care education, ensuring the facilitation of adequate EOL conversations.
IV. CONCLUSION
Many benefits arise from the delivery of an end-of-life conversation; however, many terminally ill patients do not receive the opportunity to have such a discussion.[44] To combat the low rates of EOL conversations, the federal government began reimbursing EOL discussions through Medicare.[45] State governments have adopted several different approaches to increasing the frequency of EOL conversations. Moving forward, adopting statutes that encourage medical education institutions to incorporate end of life care as an important part of their curriculums, like Florida, and the mandating of annual training on end-of-life care, like New Jersey, will ensure medical health professionals receive proper training to confront the issue.[46]
Footnotes:
[1] See Atul Gawande, Being Mortal: Medicine and What Matters in the End. 155 (1st ed. 2014).
[2] See id.
[3] See Mary Rose Shelley, Talking About the Taboo Topic of Death: State and Federal Initiatives to Reach Informed Consent at the End of Life Through Advanced Care Planning, 65 Drake L. Rev. 583, 612 (2017).
[4] See Richard B. Balaban, A physician’s guide to talking about end-of-life care, 15 J. Gen. Internal Med. 195, 195 (2000).
[5] See Id.
[6] See Ryan Sutherland, Dying Well-Informed: The Need for Better Clinical Education Surrounding Facilitating End-of-Life Conversations, 92 Yale J. Biology & Med. 757, 760 (2019).
[7] See id. at 758.
[8] See id. at 762.
[9] Id. at 758.
[10] See Joseph L. Williams & Benjamin Doolittle, Holy Simplicity: The Physician’s Role in End-of-Life Conversations, 95 Yale J. Biology & Med. 399-403, 400 (2022).
[11] Sutherland, supra note 5, at 758.
[12] Williams & Dolittle, supra note 10, at 401.
[13] See id. at 401.
[14] See Sutherland, supra note 6, at 758.
[15] See id. at 759. Informed consent, a legal requirement for medical treatment relationships, aims to ensure a patient receives information about the benefits and risks for all treatment options to include non-treatment. See Barbra, infra note 38, at 762. Even when a physician complies with the legal standard for informed consent, it does not indicate that a patient’s end of life decisions achieved a state of truly informed consent. See id. at 771.
[16] Id. at 759.
[17] Shelley, supra note 3, at 598.
[18] Life Sustaining Treatment Preferences Act of 2008, H.R. 7181, 110th Cong. (2008).
[19] See Shelley, supra note 3, at 598.
[20] Id. at 599.
[21] See Sutherland, supra note 6, at 758.
[22] See Shelley, supra note 3, at 606.
[23] See id. at 610.
[24] See id. at 602.
[25] See N.Y. Pub. Health Law § 2997-c(2) (McKinney 2010).
[26] Id. 2997-c(2).
[27] See id. 2997-c(3).
[28] See Shelley, supra note 3, at 602.
[29] See Cal. Health & Safety Code § 442.5(a)(1) (Deering 2008).
[30] Id. 442.5(a)(2).
[31] See id. 442.5(a)(2). Similar statutes have been enacted in Michigan and Vermont. See Mich. Comp. Laws Ann. § 333.5654(1) (West 2017); Vt. Stat. Ann. tit. 18, § 1871(a) (West 2017).
[32] N.J. Stat. Ann. §26:2H-132.1 (2020).
[33] See N.J. Stat. Ann. §26:2H-132.2 (2020).
[34] See Fla. Stat. § 765.102(5) (2015).
[35] See id.
[36] See id.
[37] See Sutherland, supra note 6, at 762.
[38] See Barbara A. Noah, Avoiding Overtreatment at the End of Life: Physician-Patient Communication and Truly Informed Consent, 36 Pace L. Rev. 736, 777 (2015).
[39] See Sutherland, supra note 6, at 759.
[40] Colleen Norton & Annie Thacker, Annie’s song: A student’s reflection on a memorable patient’s end-of-life, 21 Am. J. Hospice & Palliative Med. 67, 67, (2004).
[41] See Jane E. Brody, Frank Talk About Care at Life’s End, N.Y. Times (Aug. 23, 2010), https://perma.cc/NEB8-BQ2Z.
[42] Id.
[43] Balaban, supra note 4, at 195.
[44] See supra Part II.
[45] See supra Part II.
[46] See supra Part III.
About the Author:
Aaron Stephenson is a first-year J.D. Candidate at Penn State Law. A Western Pennsylvania native, Aaron graduated magna cum laude from Penn State University with a Bachelor of Science in Political Science and a minor in military studies. Aaron currently serves as an officer in the Pennsylvania Army National Guard and intends to use his degree to further his commitment to service by advocating for the residents of his Western Pennsylvania community.
Suggested Citation: Aaron Stephenson, Minimizing Pain: The Urgent Need to Educate Physicians on End-of-Life Conversations, Penn St. L. Rev.: F. Blog (Jan. 28, 2025), https://www.pennstatelawreview.org/the-forum/minimizing-pain-the-urgent-need-to-educate-physicians-on-end-of-life-conversations