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Medical Whistleblower Advocacy Network

Human Rights Defenders

“All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.”

 Universal Declaration of Human Rights

Article 1

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Surrogate Decision Makers for Health Care

Surrogate - a person whose authority to make health care decisions for a patient is based on state statute, case law, or a decision made by the medical team such as a physician or ethics committee.

 

Principals in making decisions for incompetent patients

 

1)     There must be respect and pro-active promoting patient autonomy which will foster the well-being of the patient.

2)      The patient’s right to choose a course of action remains after he or she loses decision making capacity – ie:  the doctrine of informed consent provides the same right of self determination that unpins the right of informed consent and also applies to advance directives.

 

Standards to protect the well-being and autonomy of the incompetent patient

 

1) The documented advance directive

2) Substituted judgment

3) The best interest standard

 

Documented Advance Directives

 

The designation of a proxy through a durable power of attorney for health care and the implementation of a living will are often effective ways to ensure the appropriate implementation

of the patient’s preferences with regard to health care decisions.  Health care directives that can be used in any circumstance in which a patient is incompetent or incapacitated are more effective and desirable.  To have the benefits of both a living will and a durable power of attorney, patients may document a proxy designation and, while competent, discuss with their proxy the preferences, values, or specific instructions that should be considered when making treatment decisions.

 

Substituted Judgment

 

When a patient does not have documented treatment preferences or goals, decisions concerning the incompetent patient’s health care should proceed by substituted judgment. Substituted judgment asks that someone who knows the patient attempt to make a decision in the manner that the patient would (if he or she were capable of making the decision).  Substituted medical judgment by a surrogate decision maker may not be the best way to determine the patient’s wishes as it requires great imaginative effort and requires a understanding of the patient’s values and preferences regarding medical judgments.  In respective research studies it has been shown that there is often a low correlation between what the patient would have chosen and what the substituted judgment actually did.   One way of trying to discern what a patient would say about treatment preferences is to consider the patient’s own life story and to determine whether the particular medical option is a true “fit” with the elements of the patient’s own life story.  This allows for a more complete and more accurate model – one in which the individual creates their own identity and in which the narrative shows how they conceptualize themselves. Thus, the physician and the surrogate have a prima facie moral obligation to continue the story in a manner that is meaningful and consistent with the patient’s self-conception.

 

Best Interest Standard

 

When there has been no reasonable basis for interpreting how the patient would have decided, surrogate decision makers have based treatment decisions on predicted outcomes that would most likely promote the patient’s well-being. This “best interest” standard and is most often invoked for patients who have never possessed decision making capacity or for those whom an appropriate surrogate cannot be identified. Making a decision based on another’s best interests is less an act of respecting the patient’s autonomy than it is an expression of beneficence.  Factors that should be considered when weighing the harms and benefits of various options include the pain and suffering associated with treatment, the degree and potential for benefit, and any impairments that may result from treatment.  In difficult cases, the best interest standard for decision making is essentially a judgment about quality of life.

 

Who Should Be the Surrogate Decision Maker?

 

When a medical decision needs to be made for an incompetent patient, physicians should first inquire whether the patient had directly expressed wishes in a written document, such as a living will or a durable power of attorney for health care. If the patient has not left such a document, a surrogate should be appointed. Many states have codified protocols for identifying surrogates in the absence of any prior designation. In general, these statutes indicate that the family of the patient should be responsible for medical decisions. “Family” is generally understood to be the person’s closest biological or legally recognized relations. Many states have established a hierarchy for identifying a surrogate decision maker in the absence of a documented advance directive.  It is important to recognize the extended concept of “family”, as alternatives to marriage and the nuclear family unit are common and appropriate decision makers in addition to spouses, children, parents, or siblings.  When there is no person who is closely associated with the patient, but there are persons who both care about and have some relevant knowledge of the patient, these persons should participate in the decision-making process, and in some situations, may be appropriate surrogates.

 

Resolving Conflicts

 

Decisions which profoundly affect a loved one who is incompetent to make medical decisions can be difficult for a family due to the emotional distress resulting from the situation. It is essential for physicians and other health care providers to be sensitive to the range of emotional and psychological responses of the family.  Emotionality should not be interpreted as irrationality and used to justify overriding the family’s decision-making authority. In order for appropriate decision making by the surrogate there needs to be effective communication between the physician and the surrogate.  Physicians should offer relevant medical information and explanations as well as medical opinions based on professional expertise.  But  the interests of the physician and hospital often  can intentionally pit the interests of a particular family member against those of other family members to advocate for what the physician believes to be the most appropriate course of treatment.  This is not appropriate behavior in the human rights context of informed consent.  Family members may disagree when they do not understand the medical circumstances and  each others' view points. Those persons  who have the best understanding of the patient’s values  will likely make a decision that reflects what the patient would have decided.

 

Conclusion:

 

In the case of injury or illness, the autonomy of the individual patient is ensured by physicians respecting any advance directive that a patient holds.  To further secure the autonomy of an incompetent patient in the absence of an advance directive, a surrogate decision maker should be identified. In this case, the decision maker should adhere to a substituted judgment standard when there is evidence of what the patient would have decided or, in the absence of such evidence, select the course of treatment that most likely promotes the patient’s well-being. Physicians should discuss with patients various options related to advance directives and the benefits of having directives in place before the need for such decisions arise.

"The vote is the most powerful instrument ever devised by man for breaking down injustice and destroying the terrible walls which imprison men because they are different from other men."

Lyndon B. Johnson, Speech, Washington D.C. 6th August 1965

American Bar Association - Volunteer Guardianship Monitoring Handbooks

Volunteer Guardianship Monitoring Handbooks 

Guardianship monitoring helps courts to manage risks, prevent abuse, and increase public confidence in the judicial system.  Using trained and supervised volunteers extends the monitoring capacity of the court.  

The 2011 volunteer guardianship monitoring handbooks were adapted and developed with grant funds from the State Justice Institute and the Albert and Elaine Borchard Foundation Center on Law and Aging.

See the ABA website:

http://www.americanbar.org/groups/law_aging/resources/guardianship_law_practice/court_volunteer_guardianshipmonitoring.html

  • Handbooks

Volunteer Guardianship Monitoring and Assistance: Serving the Court and the Community is a practical hands-on guide to help courts establish volunteer programs. It is based on the extensive experience of AARP, as well as existing court volunteer guardianship review programs. In addition to the Introduction, the guide includes three handbooks:

 

The Program Coordinator’s Handbook sets out basic steps for planning a program, as well as recruiting and managing volunteers. A judge or court administrator considering or initiating a volunteer program should review the manual—particularly the sections on adapting the program to a specific court and the key planning factors. The coordinator should review the entire manual and use it as a guide to tailor the program for the court. See separate appendices below. 

The Trainer’s  Handbook offers materials needed to plan a comprehensive training for volunteers, including training tips, a model training agenda, and a complete outline of lectures and exercises for a two-day curriculum for “volunteer court visitors,” as well as a one-day training for “volunteer auditors.” See separate appendices below. 

The Volunteer’s Handbook is a separate free-standing text designed as a take-home reference for volunteers. It includes background information, local resources, fact sheets, forms, and other materials that volunteers need to function effectively in the program. The court should adapt the handbook to the state guardianship statute and other relevant state laws, local court procedures, and community resources.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”

― Leo Buscaglia

Medical Whistleblower Advocacy Network

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Theodore Roosevelt- Excerpt from the speech "Citizenship In A Republic", delivered at the Sorbonne, in Paris, France on 23 April, 1910