By Renie Rutchick, MSSS
Director of Program
Choice In Dying
Almost a quarter of a century has passed since the landmark court decision that allowed the Quinlan family to remove the ventilator support from their daughter, Karen Ann, who lay in a persistent vegetative state. Since that time several other cases have sought to expand and clarify the rights of individuals and their surrogates to determine the conditions under which they die. The 1990 Supreme Court decision in Cruzan v. Director, Missouri Department of Health, recognized that the right to refuse medical care is a "liberty" interest and, therefore, constitutionally protected but it delegated the regulation of this right to the "laboratory of the states."
The increased public awareness and concern about the "right to die" generated by the Cruzan case prompted the US Congress to step in and clarify the state's role in this complicated issue. In December 1991, the federal Patient Self-Determination Act (PSDA) became effective, requiring all healthcare facilities that received Medicare or Medicaid funds to inform patients about their rights to refuse medical treatment and to sign advance directives.
Provisions of the PSDA require healthcare facilities to
This article will look at some of the issues involved in implementing the PSDA as well as opportunities for long-term care facilities to meet their ethical opportunities to patients and families and to their employees.
Case law and federal and state legislation regarding advance directives have gone a long way to protect the rights of individuals regarding their health care decision-making. Yet, in practice, individual preferences are often not known or they are ignored. Choice In Dying, which operates a 24-hour counseling hotline, regularly receives calls from families of nursing home residents who are upset and desperate because their loved ones' advance directives are not consulted or the family's input is disregarded.
An advance directive is a generic term that refers to oral and written instructions about future medical care in the event one becomes unable to speak for oneself. Three types of advance directives are recognized in New York.
A Health Care Proxy is a document that allows people to appoint a trusted individual to make healthcare decisions for them any time they are unable to speak for themselves. In New York State this is an important document because there is no surrogacy law that empowers others to fulfill this role, except in the case of DNR orders. If a Health Care Proxy is completed, "clear and convincing" evidence of the person's wishes is not necessary. However, in order to withdraw or withhold artificial nutrition and hydration, "reasonable knowledge" is required.
A Living Will is a document in which a person puts in writing wishes for care, or the withholding of treatment at the end of life. Although New York does not have a living will statute, living wills are valid evidence of a person's wishes and may constitute clear and convincing evidence.
Oral Advance Directives or "oral evidence" pertains to conversations someone has had regarding their wishes at the end of life. If spelled out with sufficient specificity, they can be considered legally "clear and convincing evidence" of wishes.The interpretation and implementation of laws in all healthcare facilities and especially in nursing homes is often difficult, particularly when there is concern about an individual's capacity to state his or her preferences, or when staff time is required to educate patients and families, or to ferret out patient preferences. In this cost cutting, healthcare environment, time spent talking with patients and families is rarely considered value added. And, the law provides little incentive to change this situation. Healthcare facilities can "get by" by demonstrating they have policies in place to meet PSDA requirements; the outcome or effectiveness of these policies need not be demonstrated.
Yet, it is ethically imperative that healthcare facilities and the providers within them live up to the spirit of the PSDA and the laws governing advance directives. It also makes good fiscal sense by saving countless hours of staff time in dispute resolution and risk management.
Decision-making at the end of life is heart wrenching for most people, especially when make in a crisis situation without forethought. Conflict among family members and between family and healthcare providers is a common accompaniment to crisis decision-making. Grief, guilt, anxiety, and a history of family situations bubble to the surface, intertwining to make rational decision- making under such circumstances extremely difficult for even the most intact family. When healthcare providers, often "strangers" whose motives are questioned, enter the picture, the problem is compounded. The result may be hours of staff time spent in mediation, when, in fact, less time could be better spent by meeting the needs of patients and families up front.
The PSDA requires facilities to educate their staff and the communities they serve (i.e., patients and families) about patient rights to specify their treatment preferences, including the refusal of treatment, and mechanisms to achieve them. Ethically this included providing and ensuring understanding of the medical information necessary to carry out these rights. This information should be provided at the time of admission. However, because the nature of this information makes it likely that such education and planning will be a process rather than a single event, it should be provided, whenever, possible, before a situation arises in which decisions will need to be made.
Among the aspects of this preplanning, three stand out as particularly significant for long-term care facilities: determining the capacity of residents to make their preferences known, establishing a care plan, and providing staff education regarding the ethical and legal rights of patients to determine their treatment preferences.
For patients without an advance directive, capacity is often an issue. Capacity is the ability to understand and appreciate the nature and consequences of one's decisions. When applied to medical decision-making or the completion of advance directives, capacity is the ability to provide informed consent. Under the law, individuals are presumed to have capacity. It is important to note that questions about capacity usually occur when individuals disagree with the recommendations of healthcare providers.
Capacity is not legally determined nor is it a static concept. Capacity is clinically determined and may vary with the complexity of the decision to be made. For example, a person may have capacity to appoint a healthcare agent but not complete a living will. The ability to understand that one is appointing a trusted loved one to make health care decisions is a far less complex decision than understanding the benefits and burdens of a specific treatment in a future situation. Capacity may also vary according to situational or personal variables. For example, a person's decision-making capacity may wax and wane throughout the day; or, it may be effected by such situations as stress, depression, acute illness, or taking medication.
When capacity fluctuates, it is ethically responsible to find "windows of opportunity" when individuals' decision-making is intact so that they may exercise their rights to determine their health care preferences. It requires a process of evaluation, using the knowledge about the patient that is gathered in day to day interaction and observation.
Sometimes, however, there is no window of opportunity and patients clearly lack capacity. In these circumstances, it is ethically responsible for providers to work with families to try to determine the patients' preferences. While no one can execute an advance directive for someone else, families often have information about their relatives' preferences. Wishes about end-of-life situations may have been previously revealed in conversations either directly or indirectly. For example, individuals may address their feelings about end-of-life care as they discuss situations with relatives, friends or even movie characters. These discussions may provide examples of "clear and convincing" oral evidence of wishes. In the absence of advance directives, it is both ethically responsible and trust building to educate families about the future decisions that might be required and how they can help provide information enabling decisions to be made in accordance with patients' wishes.
Developing a Care Plan is another way to educate patients and families about their choices and to determine the patient's treatment preferences. While advance directives are tools for end-of-life decision-making, a Care Plan describes how a person's wishes will be carried out. The major purpose of a Care Plan is to set the goals for medical treatment and for emotional, social, and spiritual supports in all stages of a person's care from the time they face serious illness or decline until their death. The plan must include a process for reviewing and evaluating the goals from time to time.
Ideally, the patient, the patient's loved ones, healthcare agent, and the healthcare team constructs a Care Plan together. If the patient cannot participate, the designated healthcare agent or other appropriate surrogates should be involved. Although the physician and members of the healthcare recommend and prescribe the medical elements of the plan, it is important that the wishes and personal values of the patient guide these elements. The patient's specific wishes, such as, desires regarding pain and symptom management, situations in which the use of antibodies, artificial nutrition and hydration, do not resuscitate orders, ventilator support, or transfer to a hospital would be acceptable or unacceptable should all be addressed.
Frequently, it is necessary to educate patients and families regarding the likely course of a disease or illness and the various decision-making points that are likely to occur along the way. For example, a patient with COPD who is likely to experience difficulty breathing without going into a full blown respiratory arrest, may require decisions about ventilator support to be made.
If facility policies preclude honoring patient preferences in any area, patients and/or surrogates must be informed and options discussed. It is ethically responsible to ensure that patients and families understand the ramifications of such policies at the time of admission or soon thereafter and that a plan be developed for handling the situation should it arise. A crisis situation is not a time for a family to first comprehend a policy that they were "informed" of at the time of admission.
Finally, it is ethically responsible to provide employee education regarding advance directives and tools to help employees deal with their own feelings when decisions are made that they find difficult to accept. This should include information about patient rights and how decision-making occurs. It should also include ways that employees can support patient autonomy or surrogate decision-making. It should provide mechanisms for employees to address their concerns regarding the appropriateness of decisions so they do not burden families with these concerns. And finally, training should address ways employees can obtain support particularly when decisions are in conflict with their personal values or beliefs about what is right for a particular patient.
Thoughtful implementation of the PSDA provides rich opportunities for long-term care facilities to meet their ethical obligation to respect patient's rights to refuse medical treatment and to honor advance directives. In addition, the costs of doing so may be considerably less than those associated with managing conflict situations when families believe their voices are not heard.
NOTES:
Rutchick, R. (1999). Implementing the PSDA: Ethical Issues and Opportunities. Ethics Network News, 5 ( 1 ).
https://www.angelfire.com/on/NYCLTCethicsnetwork/adart.html
Choice in Dying is located at: http://www.choices.org/index.html
To next article
To previous article
This newsletter's home page
NYCLTCEN home page
Choice In Dying
