5.3.2013 – Patient Choice and Control at the End of Life
This week the House passed S.77, a bill related to Patient Choice and Control at End of Life, also known as Death with Dignity. The version passed by the House, which is modeled on the law in Oregon, includes a long list of qualifications and safeguards, as well as a clear process – for many of us this was very important.
Oregon enacted Death with Dignity (DWD) on Oct 27, 1997. Since then, a total of 1,050 people have gone through what is an involved and rigorous process and had DWD prescriptions written, while only 673 patients have died from ingesting the medications that were prescribed. To give a more current perspective, of the 30,000 people who passed away in Oregon last year, only 77 of them died from ingesting medications prescribed under the DWD provisions.
During the many hours of debate on the House Floor, numerous emotional stories were told of personal experiences, both in favor of S.77 and opposed. It is clear that this issue touched many people and we did not adjourn that night until 11:35 PM.
It is important to know that S.77 respects the rights of patients – in fact, the process is guided by, and reliant on, the actions of the patient. It lays out a clear process that has to be followed or medication will not be prescribed. In order to become a “qualified patient”, one must be an adult Vermont resident with a terminal diagnosis, given 6 months or less to live. The terminal diagnosis has to be confirmed by, at least, two doctors and only the “qualified patient” can make a request for the lethal medication.
The “qualified patient” must be “capable”, which means that “the patient has the ability to make and communicate health care decisions to health care providers, including communication through persons familiar with the patient’s manner of communicating if those persons are available.” They may not have “impaired judgment” meaning that the patient sufficiently appreciates the relevant facts necessary to make an informed decision.
It is up to the patient to make an informed decision after having been advised of, not only their diagnosis and prognosis, but the many treatment options they have. They need to be made aware of hospice services and palliative care options. They also need to be advised of the probable result of taking the lethal medication, as well as the risks, for instance, in rare cases patients survive after ingesting the medication.
The “qualified patient” has to request the lethal medication three times – once in writing and twice verbally. There is a waiting period of 15 days between each oral request and a 48-hour waiting period after the final request is made. Finally, the “qualified patient” needs to be able to self-administer the medication.
Doctors are not required to participate in DWD and do so only if they want to. Their role is to respect and support the choices the patient makes and to provide all the information possible to help the patient make an informed decision. This needs to include palliative care and treatment options. Doctors who do participate must also file a report providing information to the Vermont Department of Health, which will make the statistical information available to the public, as they do in Oregon (www.public.health.oregon.gov).
A section of the bill specifies that a health care facility may prohibit a prescribing physician from writing a prescription for medication for a patient residing at that facility if the patient intends to self-administer the medication on the facility’s premises.
There is a provision that requires the Department of Health to adopt rules providing for the safe disposal of unused medication.
It should be stressed that not everyone who goes through the process and has a prescription written actually follows through and takes the medication. As evidenced in Oregon, more than a third of the “qualified patients” have not. Just having the option seems to give people a sense of comfort.
I did not tell my “story” on the Floor but I made my vote in memory of my mother. She was a conservative woman who strongly believed that Death with Dignity was a most sensible option and why shouldn’t people have this choice? She used to opine that we do this for our beloved pets, why not our beloved humans? While it, as currently laid out, would not have helped her at the end of her life, she would have been completely supportive.
My mother’s health deteriorated quickly over the course of a week and she chose to be sedated and made comfortable when it was clear there was nothing we could do to make her better. On her last evening, I read to her from Bailey White’s “Mama Makes Up Her Mind” and sang “Amazing Grace” to her. She passed away just after I had fallen asleep in her hospital room. I report this, not to “jerk tears”, but to emphasize that at the end of a long, wonderful life, death, while tough on those left behind, is a beautiful thing and not something to be feared.