State Laws Giving Terminally Ill Patients a Right to Know About End-of-Life Options

Nobody likes to talk about the end of life.   But the reality facing many cancer patients and their families is that end of life discussions and knowing your legal rights, can result in less suffering and better life quality as the end draws near.

This week’s Pink Fund Legal Blogger, Jacquelyn Baylon earned a B.A. in English from the University of California, Los Angeles and is currently a rising 3L at Loyola Law School Los Angeles.  After her mother passed away from leukemia when she was young, she developed an interest in health care, especially as it relates to those with cancer.  This interest led to her decision to pursue a career in health care law.  Jacquelyn has completed an internship with Compassion & Choices, an organization that advocates for improved end-of-life care and the expansion of end-of-life options, and an externship with the Cancer Legal Resource Center.  This summer, Jacquelyn will continue to expand her knowledge of health care law through an in-house internship with Central Health Plan of California and by completing a project with the Women Lawyers Association of Los Angeles that is designed to inform terminally ill Californians of their rights and end-of-life options.

Dying in Agony

Michelle Hargett-Beebee was 43 years old with three young children when she was diagnosed with advanced pancreatic cancer.[i]  Within one year, the severity of Michelle’s pain escalated, and she ultimately began receiving hospice care, hoping to find relief so that she could face the end of her life in peace and with dignity.  However, Michelle continued to experience extreme pain and suffering, and even though her parents advocated for improved pain management with her health care team, her healthcare team failed to inform Michelle of palliative sedation[ii] or other treatments that could have helped with her pain.  As a result, she died in agony.

Unfortunately, Michelle’s story is not uncommon.  Terminally ill patients have a number of end-of-life options available to them, such as continued curative treatment, hospice care, aggressive pain and symptom management, the refusal of unwanted treatment, voluntary stopping eating and drinking, palliative sedation, the creation of an advance health care directive, and in some states, aid in dying.[iii]  Such a range of options allows patients to spend their last months of life in a way with which they are most comfortable.  According to one study, when terminally ill cancer patients discuss their end-of-life preferences with their health care providers, they also become more likely to make decisions that lead to less suffering, more physical capability, and a prolonged ability to interact with their family and friends.[iv]

Available End-of-Life Options

However, many patients remain unaware of their available end-of-life options and are consequently deprived of these benefits.  Studies show that for a number of reasons, such as religious or moral convictions[v] and the difficulty of end-of-life conversations,[vi] health care providers frequently fail to discuss the end-of-life options available to their terminally ill patients.  Recognizing that it is important for patients to obtain such information, Michigan, California, and New York have enacted laws requiring health care providers to inform their terminally ill patients of their options.

What the law requires . . .

The Michigan Dignified Death Act[vii] requires physicians to inform their patients with reduced life expectancies of: the recommended medical treatment and alternatives as well as the advantages, disadvantages, and risks of each option; their ability to appoint someone to make health care decisions for them if they become unable to do so; their ability to receive, discontinue or refuse treatment; and their ability to choose palliative care treatment and pain and symptom management.  Similarly, California’s Right to Know End-of-Life Options Act[viii] requires health care providers to provide their terminally ill patients with comprehensive end-of-life counseling upon the patient’s request.  New York’s Palliative Care Information Act[ix] requires  health care providers to offer to provide the counseling upon a terminal diagnosis.

Regardless of whether a state places an affirmative duty on health care providers to provide terminally ill patients with end-of-life information, becoming aware of the available end-of-life options offers a number of benefits for patients and will help those with a terminal diagnosis to make informed decisions on very important and personal subjects.  For additional information on these issues or to learn more about the end-of-life options available in your state, please contact the CLRC at 866.843.2572 or www.CancerLegalResourceCenter.org  and Compassion & Choices at 800.247.7421 or www.compassionandchoices.org


[i] The events leading up to Michelle Hargett-Beebee’s death are currently the subject of litigation in California, which has recently enacted the Right to Know End-of-Life Options Act; Compassion & Choices, Hargett v. Vitas, http://compassionandchoices.org/page.aspx?pid=474 (last visited May 9, 2011); see Hargett v. Vitas, No. RG10547255 (Cal. Super. Ct. filed on Nov. 18, 2010).

[ii] Erin Brender, Palliative Sedation, 294 JAMA 1850, 1850 (2005), available at http://jama.ama-assn.org/content/294/14/1850.full.pdf (defining palliative sedation as “the use of sedative medications to relieve extreme suffering by making the patient unaware and unconscious (as in a deep sleep) while the disease takes its course, eventually leading to death. The sedative medication is gradually increased until the patient is comfortable and able to relax. Palliative sedation is not intended to cause death or shorten life.”).

[iii] This is commonly referred to as physician-assisted death or physician-assisted suicide and is a legal end-of-life option in Oregon, Washington, and Montana; see Or. Rev. Stat. §§ 127.800-897 (2010); Wash. Rev. Code Ann. §§ 70.245.010-.904 (2010); Baxter v. State, 2009 MT 449, P49-P50 (Mont. 2009).

[iv] Atul Gawande, Letting Go, The New Yorker, Aug. 2, 2010, at 1, 3,11, available at http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande.

[v] Farr Curlin, et la., Religion, Conscience, and Controversial Clinical Practices, 356 New Eng. J. Med. 593, 597 (2009), available at http://www.nejm.org/doi/pdf/10.1056/NEJMsa065316 (“14% of patients—more than 40 million Americans—may be cared for by physicians who do not believe they are obligated to disclose information about medically available treatments they consider objectionable.”).

[vi] E.g., Gawande, supra note 4, at 1, 8.

[vii] Mich. Comp. Laws §§ 333.5651-.5661 (2011).

[viii] Cal. Health & Safety Code §§ 442-442.7 (2010).

[ix] N.Y. Pub. Health § 2997-c (2011).

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