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Right to Die

OPINION: The Right to Die

May 22, 2017
by Susan Upchurch, 5th District Director

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My close friend passed away last weekend, following a diagnosis with terminal bone cancer. As his durable power of attorney for medical care, I worked with friends, family, caregivers, and Memorial Hospice to ensure that his medical needs were addressed as he suffered debilitating pain and the mental impacts of high dose pain management medication. Twenty-four hour care was required during the last week of his life.

When I signed on as his decision maker many years ago, my friend made it very clear that he wanted to have control over his end. He did not want to decline into a state of mental fog and most importantly, he did not want to suffer. In June of last year, the California End of Life Option Act became law. My friend was an intellectual person and politically active for his entire life. I found a folder in his files that indicated that he followed the progress of this new law from its inception as a bill through its final adoption. For someone in his situation, where the prognosis is definitively terminal, this law allows individuals to make the choice to take a lethal dosage of medication.

Sadly, there is an inherent conflict between the medical community and the law. The American Medical Association has a formal ethics policy that prohibits physicians from assisting patients in end of life options. This policy extends to informing patients of the availability of aid in dying programs and protocols.

As a result, when he left the hospital with a terminal diagnosis, there was no discussion of the many formal steps that would be required for him to exercise this option. He had discussed end of life choice with both his primary care physician and the discharging physician. He thought that these discussions were adequate to begin the process.

They were not.

The Aid in Dying protocol requires witnessed paperwork, multiple physicians to certify that the patient is of sound mind and not being influenced to make this choice, and most importantly, a 15 day waiting period.

After discharge and entering hospice care, he waited patiently for the 15 days to pass and then requested that the lethal dose be ordered. He was ready to die. Unfortunately, we found that the formal process and the 15-day clock had not begun.

So began the most frustrating and disappointing final week of his life. While I helped procure the required documents and made the appointments needed to begin the 15 day waiting period, he repeatedly requested that friends and family help him commit suicide. The declaration of his intent and his 24-hour care meant that this was not possible. Anyone who assisted him or left him with access to his medications could be charged with a crime.

He was scheduled to take his life ending medication on May 26. Over the weekend, he fell and hit his head. Slipping into a coma, he drew his last breath on Sunday. That traumatic event meant that his suffering was finally at an end.

I share his story in the hope that others will avoid the distressing experience that he and everyone that cared for him endured. Had my friend been informed at diagnosis, he would have been able to live life on his terms, and end it the same way.

In order to take advantage of the new law, the following is required:

  • Document must be signed by the terminal patient and witnessed by two persons. 
  • A doctor must confirm the terminal diagnosis and have a discussion with the patient – who must be of sound mind. This first Doctor’s visit begins the 15 day period. 
  • No sooner than 72 hours after the first visit, a second doctor must confirm the terminal condition and competency of the patient. 
  • On day 15, a physician phone consultation must confirm that the patient is of sound mind and intent. Then the medication can be ordered and delivered. The patient must be able to take the medication on their own without assistance.

Most importantly, the protocol can begin at diagnosis. The final phone call and delivery of medication can wait until the individual is ready for that step.


http://californiadeathwithdignity.org/end-of-life-option-act/

Comments:

Jul 11, 2017
As a hospice nurse, I really appreciated your beautifully written column, pointing out the difficulties our patients still face in accessing the Aid in Dying. As a friend and DPOA, who wanted to honor your friend's wishes, it must have been painful and frustrating to watch your dying friend, not only in pain but let down by an unfulfilled promise. I am sharing your story at a conference for nurses on "AID one year later" in August. We need to make the process simpler and more supportive for patients and their loved ones.
- Hanne Jensen

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