Freedom in Dying

Last week, New Jersey cleared a Death with Dignity bill, Assembly Bill 3228, to reach their full assembly for a vote. Sadly, most of the nation still does not have Death with Dignity laws to protect patient choices. For example, in California where my grandfather died last year, there is no law protecting Death with Dignity. My grandfather had been ready to die and said as much. Following the death of my grandmother, he lost the will to live. He was unable to swallow foods or drinks anymore, and would have died had my mother not consented to a gastric feeding tube. He was losing consciousness, said goodbye to us, and he would have died in sedated delirium, but a feeding tube was inserted which re-nourished, and brought him back to suffer for an additional 2 weeks. My mother's belief system forced her to make the decision to keep him going, and he suffered until his death as a consequence. Some years ago my grandfather-in-law was determined enough to pull out his life-sustaining IVs, oxygen and feeding tubes in three separate incidents, only to have hospital staff reconnect him each time. His wishes were to die at home and not to be kept alive by machines.
The Oregon “Death with Dignity” law while progressive, could do more to protect patient choice for comfort in dying. First, the patient must be deemed “capable” of making the decision to use the Death with Dignity Act. Secondly, the physician may refer the patient for psychiatric or psychological counseling if the physician believes the patient has a psychological disorder or depression. When this occurs, “No medication to end a patient's life in a humane and dignified manner shall be prescribed until the person performing the counseling determines that the patient is not suffering from a psychiatric or psychological disorder or depression causing impaired judgment [1995 c.3 s.3.03; 1999 c.423 s.4]”. Additionally, there are also waiting periods between the patient’s initial oral request and the writing of the prescription. The patient must ask for the prescription orally, then submit a written request, and then reiterate an oral request to his/her attending physician at least 15 days after making the initial oral request. When one considers the fact that most patients want to live as long as they can, and enjoy what time they still have left while they’re still lucid and able to do things themselves, it’s easy to see why patients can often wait too long to use the law. With the law’s restriction on administration of the medicine being allowed only by the patient himself/herself, oftentimes the patient has become so weak that he/she cannot self-administer the medicine without assistance. At this point, because the law states that no one can administer the medicine to the patient but the patient himself/herself, the patient is no longer able to use the law. Even a doctor cannot be involved at this point. If a doctor were to administer the final medication to a patient he/she could be charged and imprisoned.
Although advanced directives are important legal measures to document your end-of-life wishes, the truth is that health care facilities do not have to honor a patient’s wishes. According to “The Patient Self-Determination Act” there is nothing in ORS 127.646 to 127.654 that requires any health care organization, or any employee or agent of a health care organization, to act in a manner inconsistent with federal law or contrary to individual religious or philosophical beliefs. No health care organization shall be subject to criminal prosecution or civil liability for failure to comply with ORS 127.646 to 127.654. [1991 c.761 §4]. Also a lesser-known issue is that between hospitals and medical facilities, there is often an unsaid code of respect for when a family has been denied their choice in care in dying. For example if one facility declines to allow a patient their choice in dying, there is pressure towards other facilities to “follow suit” should the family wish to move their loved one elsewhere. With medical facilities keeping a united front, the patient’s wishes are denied. As Dr. Kevorkian said on Fox News (in the video below), “If a patient consults with a doctor who is opposed to what he wants, then he’s in the wrong place."
The legal protections that health care organizations are given, also applies to physicians. Health care providers have no duty to participate in withdrawal or withholding of certain health care; duty of provider who is unwilling to participate according to ORS 127.625. (1) No health care provider shall be under any duty, whether by contract, by statute or by any other legal requirement to participate in the withdrawal or withholding of life-sustaining procedures or of artificially administered nutrition or hydration. The healthcare provider, without abandoning the patient, either discharge the patient or make a reasonable effort to locate a different health care provider and authorize the transfer of the patient to that provider [Formerly 97.070; 1993 c.767 §20]. As Dr. Jack Kevorkian said, “You have a right to refuse to participate in anything that assaults your body or your conscience." As a doctor, he saw patients suffering, and felt that his duty to help and follow his conscience was above the law. He discusses Einstein’s quote, “Conscience supercedes the law” and Hippocrates’ saying, “’You do what is best for the patient.’ and the patient knows what’s best for the patient in most cases.” Yet, even Dr. Kevorkian used more stringent safeguards than the present Death with Dignity law before assisting patients with end-of-life wishes. Instead of two patient consultations, he would conduct anywhere from 6 to 8 interviews making sure the patient was rational. Sometimes the interviews were held with family and or psychologists present.
Fear tactics by both the media and politicians have put a negative spin on end-of-life choice. Calling “Death with Dignity” suicide or calling end-of-life consultation a “Death Panel” stigmatizes the national dialogue and intimidates family and friends of individuals who’ve opted to use the Death with Dignity law from open discussion. Additionally, hospices even have their own points of view imposed upon their patients and volunteers. When we attended hospice training, we were told that hospice’s stance was that you were not allowed to be in the room with a patient who has opted to use the “Death with Dignity” law during the time they are taking the final medication. The volunteer’s role in comfort care is to make the patient comfortable as well as provide compassion, presence and companionship. However, if one of our patients were to use the law, we were unable to support their decision by being present with them. We were actually told to either leave the patient’s home or wait outside. We believe this is intended to dissuade the patient’s confidence in using the law. Therefore, although we believe in the natural right to our choice in end-of-life, to die without suffering, there’s much work left to be done to improve and address the needs of the dying in providing the best care possible.

What do you think the future holds for end-of-life freedom? Will we look back on this time, in decades to come, and see this as a dark period in this nation’s history (akin to the pre-Civil Rights Movement era)?