Question: R, a woman with diabetes and Parkinson’s disease, executed an advance medical directive (AMD) when she was aged 70 years. Her AMD stipulated that no extraordinary measures be taken should she become terminally ill or permanently comatose, and she named her sister as her agent with durable power of attorney (DPA). Ten years later, at age 80 years, R sustained a stroke, which left her with hemiparesis and loss of cognitive function. She remained comatose for a week and was dependent on a feeding tube. Her sister decided to honor the AMD and stop all medical treatment including artificial nutrition and hydration. Given the above scenario, which of the following is most accurate?
A. R’s AMD sprang into effect when she became decisionally incapacitated.
B. An AMD can direct only the forgoing of life-sustaining treatment, not the continuation of treatment measures.
C. AMD’s are mandatory under the 1990 Federal Patient Self-Determination Act, and those without an AMD are required to make one upon admission to a hospital.
D. Those with DPA for health-care decisions are obligated to carry out the patient’s instructions but can also override them.
E. In the absence of an AMD or DPA, the attending doctor makes the final decision in the best interest of the patient.
Answer: A. An advance medical directive (AMD), sometimes called a living will, is a legally binding document executed by a competent person that provides instructions for future health-care decisions if and when that person loses decisional capacity. One can elect to forgo some or all life-sustaining measures, or to continue receiving all treatments. In 1990, Congress enacted the Federal Patient Self Determination Act, which allows patients to stipulate in advance the nature of their healthcare should they become incapacitated. Additionally, they can appoint an agent or proxy, said to have durable power of attorney (DPA) for health-care decisions, to speak for them. Agents are required to carry out, not override, the patient’s wishes. The Federal Act requires all hospitals to inquire into whether a patient has an AMD and to provide information on the subject, but the Act does not mandate that everyone should execute one. All 50 states, beginning with California in 1976, have enacted legislation on AMDs. In the absence of an AMD and DPA, a surrogate decision maker, sometimes court appointed, directs the care. The attending doctor provides the prognosis, but does not make the final decision to forgo or continue treatment.
Physicians are obligated by law to respect wishes regarding whether to forgo or continue therapy, and, if contrary to their conscience, transfer the patient to a willing health-care provider. In some jurisdictions, a patient’s wish to discontinue artificial nutrition and hydration, for example, via nasogastric or G-tube, requires a specific opt-in or opt-out choice. AMD instructions become relevant when the patient is terminally ill, but many jurisdictions allow their applicability in nonterminal conditions such as irreversible unconscious states or where the likely risks and burdens of treatment would outweigh the expected benefits (Hawaii is such a state under HRS 327E-16).
A recent review of 3,746 patients who had died between 2000 and 2006 showed that those with AMDs were more likely to want limited care or comfort care rather than all possible care, with the vast majority receiving treatment compatible with their wishes. Those who had assigned a durable power of attorney were less likely to die in the hospital or receive all care possible. The authors concluded that patients who have prepared AMDs received care that was strongly associated with their preferences. Other observers are less sanguine, noting that in only two-thirds of the time were decisions consistent, and one-third of patients changed their preferences in the face of actual illness, usually in favor of treatments rejected in advance. Surrogate agreement was only 58%, and surrogates tended to overestimate their loved one’s desire for treatment.
AMDs direct future end-of-life treatment in a hospital setting, and do not typically address emergency measures taken by ambulance personnel. The National POLST (Physician Orders for Life-Sustaining Treatment) Paradigm grew out of the need to address outpatient emergency treatment especially for seriously ill and frail patients. POLST, now available in many states across the country, is in actuality a medical order signed by the patient’s doctor directing what is and is not to be done, for example, intubation, defibrillation, etc. It does not replace the AMD but is complementary in ensuring respect for a patient’s medical wishes.
Unsurprisingly, there has been litigation over AMDs. Some of the earlier cases tended to favor the health-care institution’s refusal to cease life-sustaining treatment. In Bartling v. Glendale Adventist Medical Center, 184 Cal App 3d 961 (1986), a needle biopsy caused a patient’s lung to collapse. The patient had to be placed in restraints as he tried to remove the ventilator tubes. He had earlier executed a living will and a durable power of attorney for health care, and the family, agreeing to release the hospital and doctors from any civil liability, asked that the ventilator be removed. Instead, the hospital merely tried to "wean" him, and planned to resuscitate him in the event of a cardiopulmonary arrest. Unfortunately, no other facility was willing to accept him in transfer. However, in a defense verdict, the court held that although case law was evolving toward a greater recognition of patients’ rights, it could not be said that a common legal standard existed to guide the medical community.