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)?
