1. Know the Options

          Before engaging in discussions about withholding or withdrawing life-prolonging medical treatment, familiarize yourselft with the options. When addressing these issues with the client, the attorney should check to ensure that what the client has heard has been understood by frequently reviewing and summarizing the discussion. Discussing options for long-term care and emergency planning will help ensure that the client’s wishes are protected when the attorney prepares an advance medical directive and other planning documents.[12]

            Good advance planning for health care decisions is a continuing conversation about values, priorities, the meaning of life, and quality of life.  To help in this process, the ABA (American Bar Association) Commission on Law and Aging has produced a publication titled “Consumer’s Tool Kit for Health Care Advance Planning.”[13]  The tool kit contains a variety of self-help worksheets, suggestions, and resources, including how to select a health care agent, how to weigh odds of survival, and what to do after signing a health care advance directive.

2. Impact of Organ Donation

            Being an organ donor can help save or improve another person's life, and it can be done through live or post-mortem donation. There are numerous benefits of organ donation, and becoming an organ donor is one of the most selfless acts that a person can engage in. There is a dire shortage of available organs for needy patients. Understanding what organs can be donated can be vital in becoming an organ donor. According to the U.S. Department of Health and Human Services, each day 19 people die who are waiting for organ transplants due to a shortage.

            Many body parts can be donated, including organs, such as kidneys, heart, lungs and liver. The pancreas and intestines are also viable organs. Although many organ transplants occur post-mortem, many organs can be donated via live donation, including a full kidney or a portion of another organ, such as a part of a lung. Other parts can be transplanted, too, including tissue, stem cells, and blood and platelets. Donation through these means can restore sight or repair hearts.

            According to the U.S. Department of Health and Human Services, for each organ or tissue donor, more than 50 lives can be saved or improved. Not only does organ donation affect the lives of the recipient, but also that of the donor and his or her family. Preserving another’s life can be extremely fulfilling emotionally and may help with individual coping.

            While a few medical conditions exist that would prevent an individual from being an organ donor, such as being HIV positive or having active cancer or systemic infection, most people are eligible to donate. Age is not a factor, either, except in the case of a minor, who would need a parent’s authority.[14]

3. Deviating From the Statutory Form

            If a client feels strongly about a particular type of care – even if the applicable state law or form does not address it, the attorney should ensure that the client’s specific thoughts about the care be included in the advance directive. If a state form is being used that does not adequately address the client’s concerns, those concerns should be written on the form with an additional request that these wishes be respected and followed by doctors and other health care providers.[15]

4. Resolving Enforcement Disputes

            Even when a client’s wishes have been specified in medical care documents regarding life-prolonging medical treatment and comfort care, certain decisions may be difficult to resolve: (1) when, exactly, to administer or withhold certain medical treatments; (2) whether or not to provide, withhold or continue antibiotic or pain medicines; and (3) whether to pursue complicated, painful, and costly surgeries that may serve to prolong life without reversing the medical condition.

            In order to manage such situations, a durable power of attorney for health care will allow the appointment of someone who understands the client’s wishes and can be trusted to make decisions in accordance with the client’s wishes and best interest. For example, the power of attorney may authorize the appointed individual to: (1) give, withhold, or withdraw consent to medical or surgical procedures; (2) consent to appropriate end-of-life care, including pain relief; (3) make decisions about issues not covered in the client’s written declaration; (4) hire and fire medical personnel; (5) visit the client in the hospital or other facility even when other visiting is restricted; (6) have access to medical records and other personal information; and (7) get any required court authorization to obtain or withhold medical treatment if a doctor or hospital does not honor the client’s written instructions.[16]

E. How to Exercise Health Care Options With Durable Powers of Attorney

1. Limitations of Advance Directives

            The “declaration” portion of an advance directive functions as a contract between the client and the treating doctors, who must either honor the client’s wishes for medical care or transfer the client to other doctors or a facility that will honor those wishes. However, there are limitations to advance directives, and a document often called a “durable power of attorney for health care” enables the client to appoint someone who can be trusted to serve as the client’s “attorney-in-fact” (sometimes called “agent” or “health care proxy”) to make sure that doctors and health care providers actually exercise the health care options the 

client wishes to receive. The appointed person should be someone who is likely to be present when decisions need to be made, such as someone who lives nearby or who is willing to travel and spend time at the client’s side during hospitalization[17]

2. Resolving Document Conflicts

           If there is a conflict with instructions in another power of attorney or declaration, the provisions of the document latest in date of execution must be followed. For an example of state law provisions addressing resolution of document conflicts, see the Minnesota Designated Caregiver Agreement Law.[18]

F. Adult Right-to-Die Cases – Lessons to be Learned

            The Quinlan and Cruzan right-to-die cases were legal landmarks from which many lessons can be learned with respect to diminished capacity and advance directives.

            The first court ruling to validate advance directives was at the state level. The decision was handed down by the New Jersey Supreme Court in 1976. In Case 70 N.J. 10, 355 A 2nd 647, Chief Justice Robert Hughes upheld the following principles:

1. If patients are mentally unable to make treatment decisions, someone else may exercise their right for them.

2. Decisions that can lead to the death of a mentally incompetent patient are better made not by courts but by families, with the input of their doctors.

3. Decisions about end-of-life care should take into consideration both the invasiveness of the treatment involved and the patient's likelihood of recovery.

4. Patients have the right to refuse treatment even if this refusal might lead to death.

            The case in which Judge Hughes ruled was the request by Joe Quinlan to make legally binding health care decisions for his daughter, Karen Ann Quinlan. After lapsing into a persistent vegetative state, she was kept alive on a ventilator for several months without improvement, and her parents requested that the hospital discontinue active care. The hospital refused, and the subsequent legal battles set significant precedents. As a result of the case, Karen Ann Quinlan was gradually weaned from mechanical ventilation. She then lived for almost a decade until her death from pneumonia in 1985.[19]

            In 1990, the U.S. Supreme Court agreed to hear a case on the legality of advance directives. The Supreme Court had been reticent to hear cases on advance directives, reflecting the belief that advance directives were determined at the state rather than federal level. The case of Cruzan vs. Director involved the desire to discontinue the percutaneous gastrostomy feedings of Nancy Cruzan. The U.S. Supreme Court decided in favor of the individual right to refuse treatment, even life-sustaining treatment, and the case was referred back to the Missouri Supreme Court. The Missouri Supreme Court heard testimony about a verbal advance directive that was deemed to be sufficient evidence to support the refusal of medical treatment.

            The Quinlan and Cruzan cases emerged out of similar situations and needs. Both cases dealt with the medical care of young people in a persistent vegetative state. While similar in these regards, the two judicial decisions dealt with different types of advance directives. The case of Karen Ann Quinlan dealt with the ability of the individual to appoint a health care proxy. The case of Nancy Cruzan addressed the right of a healthy individual to establish a binding Living Will.

            In 1991, the U.S. House of Representatives enacted the Patient Self- Determination Act, which stipulates that all hospitals receiving Medicaid or Medicare reimbursement must ascertain whether patients have or wish to have advance directives. The Act does not create or legalize advance directives, but it validates their existence in each of the states.

            Still, there remain many more lessons to be learned. Back in 1950, about half of Americans who died did so at home. Now, about 85% of Americans die in a health care setting: a hospital, a nursing home or a rehabilitation center. At least 12% die in an intensive care unit. Currently, four out of every five adults in the U.S. has no advance directive.[20]

End Notes