A Case Study Overview of Legal and Ethical Principles in End-of-Life Decision Making Submitted by Kathleen A. Hessler, RN, Attorney

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1 A Case Study Overview of Legal and Ethical Principles in End-of-Life Decision Making Submitted by Kathleen A. Hessler, RN, Attorney Introduction/ Case Study Jon is a 42 year old male who survived a devastating car accident when he was 25 years old. He lives in a skilled nursing facility where he receives full assistance with activities of daily living (ADLs). He is in a semi-vegetative state, as documented by one physician. He has no skilled care needs. Jon s mother was appointed his legal guardian in 1996, one year after his accident. He has three sisters and one brother. For 17 years, Jon s mother visited the facility at least twice daily to feed her son. He would eat all his food and did not have problems chewing or swallowing. Jon was a healthy looking adult male and he had been medically stable for many years. Six weeks ago Jon s mother died of a heart attack. Since then, Jon has deteriorated; he will not take food or drink when offered to him by the certified nursing assistants (CNAs). He lost 20 pounds and was sent to the hospital where he was treated with antibiotics for a diagnosis of pneumonia. After successful treatment of the pneumonia and hydration with IV fluids, Jon was sent back to the nursing facility but did not resume eating or drinking except for intermittent small bites. The resident s attending physician approached the siblings about sending Jon back to the hospital for placement of a gastrostomy tube (a tube surgically inserted into the stomach) to allow for nourishment. Two siblings wish to consent to the surgical procedure. The other two siblings are in agreement that they do not want a feeding tube intervention. They want to allow their brother to go and are advocating keeping him at the nursing facility to die. You receive a call from the facility (your client) asking for your assistance in this matter. The resident has no advance directives. The facility administrator advises you that one of the siblings is threatening to obtain a court order prohibiting the surgical insertion of a gastrostomy (feeding) tube. What actions will you take? 1. Who has the legal right to make decisions for the resident under your state law? 2. Is this an end-of-life decision based on definition in your state law? 3. What ethical principles are at issue in this matter? 4. Would you consider facilitating a mediation/ethical discussion with the administrator and all the siblings present? Who else would you invite to the meeting? List the key topics for the discussion.

2 The Law The complexity of end-of-life issues and the rights of patients to make their own health care decisions was underscored by the rise in end-of-life cases brought to the courts in the 1970s and 1980s. In response to the increased number of cases introduced into the judicial system, coupled with the question whether the courts were the proper place to decide these issues, U. S. Congress passed the Patient Self-Determination Act (PSDA) in This law required health care institutions to provide information about advance directives to adult patients when they are admitted to a healthcare facility. The PSDA became effective in December Subsequently, all states implemented or updated state legislation to address the specific requirements of advance directive execution. These laws ensure an individual s right to dictate future care in the event they become incapacitated and unable to speak for themselves. Yet, nearly sixteen years after the federal PSDA passed, statistics showed that a majority of people did not have advance directives in place. Specifically, a Pew Research Center Survey conducted in 2006 found only 29 percent of Americans had a living will (1). A 2003 U.S. Department of Health & Human Services research study, through its Agency for Healthcare Research and Quality (AHRQ), found that less than 50 percent of terminally or severely ill patients had an advance directive in their medical chart. The Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 2

3 study further reported that as few as 12 percent of patients who had an advance directive received guidance from their physician in the execution of the directive. Finally, astoundingly, 65 to 76 percent of physicians whose patients had implemented advance directives were not aware that the document(s) existed. (2) Side Bar New Mexico Law Uniform Health Care Decisions Act 24-7A-5 A person lacks capacity No agent or guardian has been appointed A surrogate may act if reasonably available Surrogates listed in descending order: (1) the spouse, unless legally separated or pending divorce ; (2) an individual in a long-term relationship with the patient ; (3) an adult child; (4) a parent; (5) an adult brother or sister; (6) a grandparent; If none of the above, then An adult who has exhibited special care and concern and who is familiar with the patient s values An advance directive may consist of a Power of Attorney for Healthcare and/or a Living Will. In some states, these two documents are united as one and may have different titles. The power of attorney for health care gives a named agent (usually a close loved one) the right to make decisions on behalf of an incapacitated person. In the absence of an executed power of attorney for healthcare decision-making, most states provide for healthcare decisions to be made by a surrogate in a specific order of priority (see sidebar for example of priority in New Mexico law). The living will document provides information as to what treatments the debilitated person would want administered in the event they are unable to speak for themselves. In essence, by executing an advance directive, one makes health care decisions in advance regarding end-of life care. Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 3

4 Each state law varies regarding the specific form and language for advance directives. Regardless of variations in form, these documents are usually honored across state lines. In New Mexico law for example, the advance directive document consists of two parts: 1) The Power of Attorney for Health Care (POAHC) and; 2) Instructions for Health Care, also known as the living will. (3) The living will section of the advance directive speaks to the administration of artificial hydration and nutrition (food and fluid provided through an artificial feeding tube surgically inserted into the stomach, or in some cases, intravenous nutritional feedings). One may add other care options such as comfort measures and pain control. The New Mexico law also stipulates a section on organ donation. In general, advance directive law does not distinguish between withholding and withdrawing artificial nutrition and hydration. Both are allowed and both may be considered compassionate means of treatment depending on the individual s medical condition and prognosis. Ethically, people may view the choice to withdraw or withhold treatment differently, depending on one s values or religious beliefs. Ethical Dilemmas A dilemma is a situation in which one must choose between two alternatives that are usually undesirable. An ethical dilemma is a complex situation that often involves an apparent mental conflict between moral imperatives, in which to obey one would result in Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 4

5 transgressing another. (4) Specifically, an ethical dilemma presents itself when a decision must be made between two or more actions where one of the actions can be justified, but where a question remains whether the correct course was chosen. A decision made in the context of an ethical dilemma may potentially harm another person, place a person at risk, or violate the rights of one or more people. (5) In order to address ethical dilemmas in healthcare treatment, open and honest discussions must take place among all parties involved. Ethical discussions should include conversations about a patient s values or preferences, medical conditions, and quality of life issues as well as financial, legal and other external considerations. Lawyers are in a unique position to facilitate such ethical conversations/discussions while advising their clients on the legal implications of various decisions. Healthcare ethical dilemmas are not limited to end-of-life issues. In Jon s case, the attorney has an opportunity to bring the pertinent members of the healthcare team and all siblings together to engage in discussion about 1) Jon s current medical status, 2) Jon s actual or perceived quality of life, 3) Jon s known preferences or his best interest and; 4) other issues such as financial, religious, or legal. The attorney, acting as a facilitator/mediator should stress the importance of having the physician present at the meeting so that the current medical information is available and understood by all in the room. The nursing facility social worker and the Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 5

6 primary nurse and or Director of Nursing would be important participants. Perhaps a CNA who has taken care of Jon for an extended period of time would be a helpful participant. An initial discussion engaging the siblings into conversation about what Jon was like prior to the accident and growing up as siblings may help put everyone at ease. By facilitating the meeting and engaging everyone in discussions about the various issues, the attorney facilitator allows all participants to be heard. Additionally, the forum provides education and information on issues and facts of which the participants may not have been aware. This dialogue can be important and may bring the siblings closer to a consensus, assuming the legal issues have been addressed in this matter. Ethical decisions are not easy and the group should be reminded that these are difficult decisions. Principle of Autonomy or Self-Determination The ethical principle of autonomy in health care decision-making has evolved to allow individuals to make independent decisions about their own healthcare, especially with regard to end-of-life issues. Gone are the days when the physician alone dictates healthcare treatments for each individual. While as a society, we place great value on an individual s right to make choices in determining their healthcare and medical treatment options, this right does not give the patient unrestricted permission to demand futile or unnecessary care. Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 6

7 But often, the right of patient self-determination is coupled with competing ethical issues. And, as technological advances saturate the medical and health fields, just decisions become more complex and difficult. Ethical dilemmas become more evident to individuals as they or their surrogate decision-makers struggle with treatment options. In this case, we do not know what the resident would have wanted; he became incapacitated at a young age and had no advance directives. However, perhaps in the process of the discussion, a sibling may reveal information that will provide some insight into what Jon would have wanted. If there is no knowledge of what Jon s decisions would have been, the discussion should address whether a feeding tube is in Jon s best interest? Consider whether Jon s decline is a temporary set-back or reaction to his mother s absence, such as a demonstration of grief. Principle of Truth-Telling Notwithstanding a patient s right to make their own healthcare decisions, a physician has an ethical duty of truth telling; s/he must be honest and forthright with the patient and/or the healthcare surrogate. The physician should explain the patient/resident s prognosis and potential for the extent of recovery or decline. For instance, in this case, the physician should explain what s/he means by semi-vegetative state. What cognitive changes can be expected, if any? Furthermore, the physician should provide enough information about the risks and benefits available in a given situation to allow the patient or surrogate to make an Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 7

8 informed choice about new or continuing procedures, medications or treatments. The physician is under an ethical obligation to offer treatment(s) that would benefit the patient. Palliative care measures, while not offering a cure, do offer benefits to the patient. In offering treatment options, physicians should refrain from projecting what he or she believes the patient or surrogate decision-maker would want. In this case, the physician should provide clear information as to the benefits and risks of the feeding tube in light of Jon s overall medical picture. Principle of Beneficence Beneficence is defined as the principle of doing good, showing kindness, and or helping others (5). In healthcare, practicing the principle of beneficence means promoting the patient s best interest as well as protecting the patient from harm. In other words, the benefits of providing a medical intervention (or omission of an intervention) must outweigh the burden of the intervention or omission. In a situation where a patient is incapacitated or incompetent, beneficence rises above the principle of autonomy in protecting and benefiting the patient. (6). What does promoting Jon s best interest mean in this case? Here, we have a resident who has survived for 17 years without neurological improvement. He remains in a semi-vegetative state and has survived without extraordinary treatment. Should this information factor into the decision to initiate artificial nutrition and hydration? What is the benefit of the gastrostomy tube? Would prolonging Jon s life through artificial means, be of benefit or burden to him? Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 8

9 Principles of Nonmaleficence Clinicians have an ethical obligation to avoid causing harm. This principle is widely recognized as nonmaleficence or do no harm. While providers must not intentionally harm patients, many chosen and acceptable treatments carry potential for risk or harm for the patient. However, the benefits of chosen treatments are expected to outweigh the burden to the patient. Physicians are obligated to discuss the benefits versus risks of a given treatment (or omission of a treatment) with a patient and or surrogate, thus enabling the patient to make an informed decision to accept or decline the treatment. A person s concept of good or harm, and thus their decision to accept or forego treatment are closely tied to their individual and or community values. A physician may find that a patient or surrogate s decision conflict with the ethical principles that govern the medical profession. In this case, if the physician or other healthcare provider or family member believes that Jon is in a state of grief and may regain his desire to eat, this issue should be raised. The physician may discuss the option of providing a feeding tube for a period of time to see if the patient regains the ability to eat when fed. What are the implications if a feeding tube is inserted and the surrogate wishes to withdraw treatment in the future? Principle of Justice The concept of justice is a perceived and accepted obligation in the medical Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 9

10 community. Generally, justice demands that people in similar circumstances are treated similarly. The principle of distributive justice requires that all persons be treated equally and that no one should be given a disproportionate share of society s resources. But who decides? Does the principle of autonomy override the principle of justice when a patient or surrogate demands treatments that may be futile or costly? Would placement of a feeding tube be considered futile treatment in Jon s case? What values are involved? Jon has survived for 17 years in a nursing facility; his care has been supported by state and federal funding. Should this information be raised and factored into the discussion of whether or not to insert a feeding tube. Why or why not? Ethics of Surrogate Decision-Making An incompetent/incapacitated patient s guardian, agent for healthcare decisionmaking, or other designated surrogate pursuant to state law, must make informed decisions for the patient based on what the patient would have wanted. In other words, the healthcare decision-maker must stand in the shoes of the patient and they must honor the patient s wishes. The agent can only do this if the patient previously stated their directives, verbally or in writing, or if the surrogate is familiar with the patient s values. Alternatively, if the health care decision-maker does not know what the patient would have wanted, the decision-maker must act in the best interest of the patient. Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 10

11 Specifically, the agent or surrogate must make a good-faith determination in choosing treatments that promotes the patient s overall greatest well-being within acceptable ethical and medical standards. A surrogate s individual morals and values may play a significant role in the decision-making. However, the surrogate, like the provider, has a moral duty to put aside their own values in determining best interest and to look to the values of the patient or to ethical and medical standards in determining best interest. Jon s siblings undoubtedly have their own opinions (based on their own values) on Jon s quality of life and what may or may not be in his best interest. Consider the quality of life that Jon had when his mother was alive and visiting everyday. How important, if at all, is this information in future decision-making for Jon? Conclusion/Role of the Attorney As Counselors-at-Law, healthcare attorneys have a unique opportunity to provide both legal and ethical guidance to their clients about healthcare issues, including but not limited to end-of-life issues. Whether a lawyer represents long-term care organizations, physician groups, or individuals, he or she can guide, educate, and lead clients in conversations on the legal and ethical principles involved in complex care matters. Ethical discussions about corporate, community, or individual values can be helpful in resolving a myriad of healthcare legal and ethical issues. With regard to end-of Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 11

12 life issues, lawyers can educate their organization and physician clients on the need to fully discuss the benefits of withholding treatment and/or burdens versus benefits of continuing or withdrawing care. End-of-life decision-making is not black and white. Ongoing discussion is often necessary. Practice Tips for the Attorney in Long-Term Care Encourage your clients to engage patients and surrogates in discussions on executing advance directives Educate your corporate, facility and physician clients on both the legal and ethical issues involving end-of-life matters Assist your clients in training-the-trainer on the ethical and legal issues in longterm care Assist your client in the design and implementation of facility ethics committees Role of the Individual Individuals should consider their loved ones and discuss end of life issues in advance and execute an advance directive. It is best to start these conversations before being confronted with a devastating diagnosis or tragic accident. These discussions can take place in a lighthearted manner. Death and dying is part of life. People plan for other major events in their lives; yet, many people let this most important event of their life slip by without the requisite planning. Do it today! Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 12

13 Tips for Individuals Who Admit Death is Inevitable Start discussions with your family and friends today about your end-of-life wishes Choose someone close to you whom you trust to be your health care agent Download your state s advance directive forms from a state or university website Execute advance directives properly; for instance, does your state require the documents to be witnessed or notarized? Provide copies of your advance directives to your named agent and all your health care providers Keep the original advance directive, or a copy, in a safe place or with your medical records Encourage family and friends to execute advance directives This article should not be construed to be legal or medical advice. This presentation is for educational purposes only Citations 1. PewResearch Center of the People and the Press New Mexico Uniform Health Care Decisions Act 24-7A-4 NMSA _dilemma 5. Lo, Bernard Resolving Ethical Dilemmas, A Guide for Clinicians, 4 th ed. Lippincott Williams & Wilkens, Baltimore, MD. 6. Post LF, Blustein J, Dubler N.N Handbook for Health Care Ethics Committees, The John Hopkins University Press, p.15. Prepared for AHLA LTC Program February 2013 by Kathleen A. Hessler, RN Attorney 13