THE RIGHT TO DIE

The Next Steps Needed

The Law

In 2015, during a special session on health care, the California legislature passed a death with dignity bill called the California End of Life Option Act. Signed into law by Governor Jerry Brown in October 2015, the act took effect on June 9, 2016. It allows terminally ill patients to request aid in dying in certain clearly defined situations.  Over the years, changes have been made, but the law still falls short in too many ways.  Right now, the requirements are as follows:

• Must be 18 years or older.

• Must be of sound mind and exhibit appropriate decision-making capabilities to the attending physician.

• Must be able to self-ingest the medication either orally or by pushing through an NG tube.

• Must be diagnosed with a terminal disease, with a life expectancy of six months or less, by two physicians.  There is a time delay so that this can’t happen immediately.

Once this occurs, you can have the prescribing physician order the costly medicine and, in most cases, that physician will supervise the death. 

The Reality

My husband and I knew about and supported this idea.  Why should anyone have to die a slow and painful death when they were in a terminal condition?  We had discussed our feelings throughout the years and knew (and trusted) that we would honor our loved one’s desires when and if the time came.  And then, it did.

Mike got diagnosed with glioblastoma, a treatable, but not curable condition. Initially, we thought we would have a year at least, but his was no operable and radiation treatment really didn’t work for him.  His condition worsened, though he didn’t have a lot of the awful aspects of the cancer.  He wasn’t in pain. Still, his weakness grew so severe that he couldn’t care for himself.  He asked me to help him die.

First, you must find a physician willing to help you with this and there are no useful lists to consult. Then, there is the time delay between the visits of both doctors.  Finally, you have to wait for the medicine.  It turns out that the ½ C of liquid you have to ingest with your own hand is terribly bitter, an awful way to end.  And after all the “process,” you must be aware and considered of sound mind.  Even if you had been at the start of the process, you must still be capable of legal consent at the end.

Mike wasn’t.  He was barely conscious, despite having consciously signed the paperwork just a few days before.  The doctor and I knew we could not go forward.  Remember, the patient must take it themselves.  If we helped, we could be charged with murder.

Fortunately, hospice helped me keep him comfortable (as much as possible), and he died a short time later, still without pain.  But it wasn’t what we wanted.  I believe he was such a strong-willed guy that when he decided he was done, his body obeyed him.  But still, not everyone will be able to do this.

The Law Needs to Change

While I haven’t blogged about this yet, the Canadian program, MAID, goes too far, taking away control from patients and families.  But consider some situations where people may be stuck, dying slowly, painfully and at great cost.

1.   Dementia.  As you must be of sound mind when you take the dose, no one with this disease will qualify.  When you first get diagnosed, you are not within the last months of life.  By the time most of us would want to give up, you’re not going to be considered “of sound mind.”

2.   Our story.  We know what our loved one wants, but it takes too long to get through the process and they lose the right to choose.

3.   Severe pain, but not a terminal disease – if there is no way to treat the pain and it will be for the rest of your life, shouldn’t you be able to choose?

An Answer

We currently have a legal document called the Advance Healthcare Directive.   It covers some issues, but not the key area of a right to die.  The document is where people should be able to state their desires regarding the right to die.  Imagine that you select one or more people to be your proxy if you wish to die under certain circumstances.  You might say that if you have dementia and you no longer recognize important people in your life, you wish to die.  Or, you might state that when you are no longer conscious with a terminal illness, you wish to die.  You could state the people/doctors who would be held harmless if they helped you.

To avoid the kind of family interventions that too often occur, you could state that only your proxy has the right to decide on the timing.  We’d also need to be sure the criminal laws protect someone who is helping another die under the terms of this directive.  There should be a way to make it easier for people to state their wishes and see them carried out than we have currently, without giving the state the power to kill you if you start becoming too expensive. 

Only a few days after Mike’s death, I am hurting so badly I can barely function.  But this is too important to put off.  I hope you agree.  We don’t want the loosey-goosey Canadian MAID program, but we can do better for our loved ones.