Honoring the Intentions of a Loved One The Importance of Advance Directives

By Lindsey E. Wilkinson

Wilkinson Lindsey E. Wilkinson is an associate attorney at Fox Rothschild LLP in the Taxation and Wealth Planning Department and Fiduciary Litigation Department.

Honoring the Intentions of a Loved One— The Importance of Advance Directives

Trusts and estates practitioners routinely draft wills, living wills, and financial powers of attorney for their clients. My understanding of the importance of a living will was recently reinforced when I had to advise a family member to search for his wife’s advance directive.

My aunt elected to consent to surgery where doctors would attempt to remove a brain tumor below her cerebellum, wrapped around the vagus nerve. The surgery had a 75 percent chance of success. On their way to the doctor, my aunt and her husband did not even consider the possibility of failure. She had her bag packed neatly for rehab and considered her future without the falls, dizziness, and other struggles that her brain tumor imposed on her.

Unfortunately, at the end of the surgery, my aunt suffered a massive blood hemorrhage and stroke, leaving her unresponsive, in a vegetative state, with a “one percent chance” of survival. When I heard the news, I called my uncle and advised him to look for her advance directive. Luckily, she had one prepared along with her will in 2016. Within a week of the operation, and after a proper Catholic unction was performed by a priest (unction is a service that forgives any and all the sins of a sick person committed during the person’s mortal life), family members and the priest gathered in the small hospital room to witness the removal of the feeding tube and breathing apparatus. She struggled to breath momentarily before releasing her last breath.

Although her last few moments were agonizing to watch, my aunt felt no pain. More importantly, her intentions were honored. She would not have wanted to remain in a vegetative state. Such a state would have been contrary to her entire life as a light-hearted, loving, caring, compassionate person. My aunt loved to laugh. She would find humor and joy wherever she went, always outgoing and a true crowd-pleaser. That is how she will be remembered.

Finding a Practical Legal Solution to a Bio-ethical Dilemma

Advances in medical technology have served to prolong the physical life in patients lacking significant brain function, and also have underscored the importance of advance directives in the modern era. Patients enduring life-sustaining treatments involving feeding tubes and artificial nutrition often present ethical and legal dilemmas, which arise from ignorance about the patient’s preferences for treatment. Many will recall the highly publicized Terry Schiavo case, in which a court-appointed guardian filed to discontinue life-prolonging procedures on behalf of Ms. Schiavo, who was in a vegetative state for nearly a decade, on the basis that the guardian herself believed Ms. Schiavo would make the same decision if she were competent. The guardianship court authorized the discontinuance of the life-prolonging procedures; however, Ms. Schiavo’s parents appealed the order, claiming they found new evidence that their daughter would not have refused the life-sustaining procedures. The case was appealed until it reached the Supreme Court of Florida, which denied review and remanded the case to the Florida Circuit Court. After hearing advocacy on both sides and five medical experts, the court concluded that the parents did not meet their burden of proof and ordered that Ms. Schiavo’s artificial life-support be withdrawn at 3:00 p.m. on January 3, 2003.

The parents, however, filed a simultaneous federal action to stall the termination of Ms. Schiavo’s life-supporting treatments, and it was not until her case was denied certiorari by the Supreme Court of the United States in 2005 for the judicial processes to end. See In re Guardianship of Schiavo, 792 So. 2d 551, 554 (Fla. Dist. Ct. App. 2001), reh’gs denied, 800 So. 2d 640 (Fla. Dist. Ct. App. 2001) (remanding to In re Guardianship of Schiavo et al. v. Schindler et al., 2002 WL 31817960, at *5 (Fla. Cir. Ct. 2002), appeal denied, 816 So. 2d 127 (Fla. 2002)). See also In re Guardianship of Schiavo et al. v. Schindler et al., 2002 WL 31817960, at *5 (Fla. Cir. Ct. 2002); see also Schiavo ex rel. Schindler v. Schiavo, 358 F. Supp. 2d 1161 (M.D. Fla. 2005), aff’d, 403 F.3d 1289 (11th Cir. 2005), reh’g denied, 404 F.3d 1282 (11th Cir. 2005), reh’g en banc denied, 404 F.3d 1270 (11th Cir. 2005), application for stay and writ of certiorari denied, 125 S. Ct. 1722 (2005).

Ensuring Due Process: Balancing the Patient’s Wishes with Those of the Family

The federal Patient Self-Determination Act requires all hospitals to ask patients when admitted if they have a living will. In California, the right to protect one’s bodily integrity is a matter of constitutional concern, and the courts have held that a violation of a patient’s due process rights occurs if the physician is the sole determiner of a patient’s capacity. CA Advoc. for Nursing Home Reform v. Smith, 38 Cal. App. 5th 838, 879 (2019) (as modified after denial of rehearing). Under Pennsylvania law, the Pennsylvania Supreme Court held only the judgment of two family members and a physician could determine what measures a person in a persistent vegetative state would have desired. In re Fiori, 673 A.2d 905, 912 (Pa. 1996). On the other hand, Kentucky legislation allows the judiciary to designate a surrogate acting in good faith to make such decisions. Woods v. Commw., 142 S.W.3d 24, 40 (Ky. 2004). A Texas Court of Appeals recently struck down its Advanced Directives Act when invoked by an attending physician who authorized involuntary passive euthanasia of an infant. T.L. v. Cook Children’s Med. Ctr., 607 S.W.3d 9, 22 (Tex. Ct. App. 2020).

Know Your State’s Law When Planning for the Worst

Statutes exist that authorize and recognize that advance directives are one solution for individuals to bypass the long and arduous court process surrounding termination of life. Depending on the state in which the client lives, the practitioner should look to the appropriate state statute to determine the requirements for the contents and form of an advance directive. New York’s Public Health Law section 2981 states the parameters under which a health care proxy may be appointed; it places restrictions on employees of hospitals and should be reviewed closely by the practitioner preparing the advance directive. Florida Statute section 765.203 has suggested a form for a competent principal’s written designation of a health care surrogate. Connecticut and Illinois both provide statutory forms for documents designating a health care representative. See Conn. Gen. Stat. Ann. § 19a-575a (West 2019); 755 Ill. Comp. Stat. 45/4-10 (2021).

Pennsylvania’s General Assembly acknowledges that life-sustaining procedures are uncomfortable and may cause a loss of dignity to a person, as well as burdensome prolongation of life beyond natural limits. 20 Pa. Cons. Stat. § 5423(c)(3)–(4). Pennsylvania’s Health Care Agents and Representatives Act (the Act) “respect[s] advance health care directives, as well as the decisions of close relatives and friends, where the incompetent person suffers from an end-stage condition or permanent unconsciousness, and enables health care providers to comply with such decisions.” In re D.L.H., 2 A.3d 505, 514 (Pa. 2010) (citations omitted). In passing the Act, the General Assembly explicitly found that “individuals have a qualified right to make decisions relating to their own care.” 20 Pa. Cons. Stat. § 5423(c)(1). This includes a qualified health care agent’s right to refuse life-preserving medical treatment on behalf of a principal. Note, however, someone who is already not competent cannot appoint a health care agent. In re D.L.H., 2 A.3d at 509. In Pennsylvania, if a person has no health care agent, the law mandates that care must be provided. This seems ethical and right; however, at some point, if a person is in a permanently vegetative state, he will likely be subjected to the court process. Notably, court-appointed guardians do not automatically have authority to make end-of-life decisions unless stated in the final decree of adjudication of incapacity.

Counseling Your Client about the Importance of Advance Directives

As a rule of thumb, estate planners should always counsel clients to plan about the possibility of incapacity. This includes physical decline (vision, hearing, memory), as well as mental decline. With mental decline comes the need for asset protection (the financial power of attorney, trusts, LLCs) and protection for the person (the advance health care directive focusing on end-of-life care, nomination of a guardian and caregivers). See, generally, Lawrence Frolik & Bernard Krooks, Elder Law 1–8 (Heckerling Materials Jan. 14, 2013).

The plethora of cases surrounding the rights to termination of life procedures reminds practitioners of the importance of counseling a client about (1) the need to plan and prepare for life support, (2) the need for informed consent to end treatment, (3) the financial costs of medical treatment, and (4) the emotional burdens placed on friends and family faced with the bio-ethical dilemma.

Principals must appoint a health care agent in an advance directive before becoming incompetent to make their own decisions. An advance directive survives a declaration of a person as incapacitated. A living will is another means for a principal to adopt an advance directive. A living will is “an instrument authorizing and directing the withholding or withdrawing of life supports under certain circumstances.” Gregory G. Sarno, J.D., Living Wills, 49 A.L.R.4th 812 (ed. 1986). Some living wills will allow a competent principal to check off which medical treatments she is willing to accept. It is prudent for the legal practitioner to ask whether the client would like to check these boxes off, or give the health care agent the authority to decide which treatment to reject. The counselor should aim to discover at what point the principal would prefer termination of life-sustaining treatment. Many clients simply do not want to imagine death. They are unaware of the intense legal mechanisms designed to promote their rights but also could prolong a horrible state suspended between life and death. Notwithstanding, it is up to each individual to make the important choice about what life-sustaining treatment he would tolerate if unable to communicate his informed consent.

More often than not, it is the surrogate, guardian, or agent appointed to make the decision for an adult patient with the decision-making capacity who should act in accordance with the patient’s wishes, including the patient’s religious and moral beliefs. Under New York state law, “[a]n assessment of the patient’s best interests shall include: consideration of the dignity and uniqueness of every person; the possibility of preserving the patient’s life; the preservation, improvement or restoration of the patient’s health or functions; the relief of the patient’s suffering; and any medical condition and such other concerns and values as a reasonable person in the patient’s circumstances would wish to consider.” N.Y. Pub. Health § 2994-d(4)(ii). Under legislation effective June 17, 2020, decisions by surrogates to withhold or withdraw life-sustaining treatment (including decisions to accept a hospice plan) are authorized only under specific circumstances: (1) it is an extraordinary burden to the patient and an attending practitioner determines with the independent concurrence of another physician, nurse practitioner, or physician assistant that, to a reasonable degree of medical certainty either (A) the patient has an illness or injury expected to cause death within six months, whether or not treatment is provided or (B) the patient is permanently unconscious; or (2) treatment would involve pain, suffering, or other burden that would reasonably be deemed inhumane or extraordinarily burdensome and the patient has an irreversible or incurable condition as determined by the attending practitioner with a concurrence of another physician, nurse practitioner,or physician assistant. Id. at 2994-d(5)(a) (i)-(ii).

Unless the patient has an advance directive, hospitals fear civil liability for terminating life support systems without court approval. With the development of state laws in support of advance directives, hospitals could face liability for administering care against the patient’s directive. Hospital liability varies, however, depending on whether the jurisprudence of the forum has identified hospitals as state actors or not.

Conclusion

All individuals have the right to make the important choice about what life-sustaining treatment they would tolerate if unable to communicate their informed consent. I am thankful that my aunt made this important personal decision while of sound mind and that my family did not need to go through an agonizing, expensive, emotionally painful judicial process to ensure her wishes were honored.

Published in Probate & Property, Volume 36, No 6 © 2022 by the American Bar Association. Reproduced with permission. All rights reserved. This information or any portion thereof may not be copied or disseminated in any form or by any means or stored in an electronic database or retrieval system without the express written consent of the American Bar Association.

Probate & Property, November/December 2022