The End of Life Option Act: My Take

My linear, black and white thinking was serving me well until I came across someone who had lived it.


On June 9, 2016 in California a bill called AB-15 went into effect.  This bill was also called the End of Life Option Act.  In brief, the law allows a person 18 years or older suffering from a terminal medical condition to request life-ending medication to decide when they want to die. A recent report by the California Department of public health stated 111 people have taken advantage of the law since its inception.  The law did make it onerous to go through with the process.  The patient needs to request the drug on 2 separate occasions and in writing.  They must be cleared by 2 separate doctors. They must have a life expectancy of less than 6 months.  They much reaffirm this request 48 hours prior to the date of death and the medication must be self administered.

Initially when I heard about this bill I was appalled.  I did not want the decision to actively assist in death to be in the hands of doctors.  I got into this profession to do the exact opposite.  I want people to live and be healthy. I remember my physician partner saying “we’re physicians not executioners” and I agreed wholeheartedly.  It’s easy to make these claims when you’re not the one suffering or are close to a person who is.  My linear, black and white thinking was serving me well until I came across someone who had lived it.

A few weeks ago I sat in one of our office rooms across from Nathan, an eighty something year old man in for a routine check of his blood pressure. His blood pressure was well controlled and I was ready to wrap up the visit and send him on his way when he wanted to let me know about something. “Doc, do you know about this Right to Die Act in California?”  He asked.  I said yes and briefly summarized my thoughts on it.  “Well,” he said, “Let me tell you about my sister.”

His sister was younger than he was but had been diagnosed with a progressive muscular disorder which he didn’t know the name of but equated to Lou Gehrig’s disease (or Amyotrophic Lateral Sclerosis).  The disease had progressed over years to involve her whole body except her head.  She had no muscular control of the muscles affected and she was only able to talk and eat.  According to Nathan, she was suffering and miserable.  She decided she wanted to end her life.  She went about the process described in the law.  

Nathan states this was hard in itself because finding a doctor who prescribed the medicine was difficult.  She eventually found a doctor in Irvine who worked with a doctor in San Francisco.  She completed the process and was approved to end her life.  When she received approval, Nathan states that her whole outlook on life changed.  She was finally going to be able to control something in her life.  She was “excited” to complete the process. The day of her death came.  

She was prescribed a liquid cocktail of high dose Morphine and Digoxin, medications that in high doses alter breathing and the heart to the point of death. Some family members had been vocally against the process but had come to acceptance and were there by her side.  According to the law, she had to “self-administer” the medication.  This was to be accomplished by having her use a straw to suck up the liquid and swallow it (some of the last bodily functions she had control over). With family surrounding her, Nathan stated she “slurped up every last bit of the medication.” Ten to 20 minutes later, she had died.

Nathan was very clear that this was a good thing in his mind.  His sister had been suffering for years and was finally at peace, which she entered on her own terms.  It was her way of giving this disease the “middle finger” as she exited life.  He praised the new law. At the end of our discussion he looked over at me and asked me again how I felt about the law. I fumbled my words this time.  

Let me tell you why I have such a hard time getting on board with this law.  There are 2 main reasons.  The first is a wonderful program called Hospice.  Hospice is for people in similar situations who are expected to live less than 6 months.  The focus in hospice is to switch from treatment that cures a disease to treatment that relieves suffering as a person transitions out of this life.  Medications are given to relieve pain, breathing problems and any other issues that causes suffering.  It is not given to hasten or aid in death. The other reason for opposing this law is a moral one.  In my mind prescribing a medication for the sole purpose of killing a person is akin to murder because it would be willful and premeditated.  Again, putting this decision in the hands of doctors is scary.  I became a doctor to help people live and be healthy.  Part of that is relieving suffering but I believe that can be done without ending life.

Also, I am also a little confused about when our society became okay with the idea of doctors aiding in killing.  I’m sure we all remember the conviction of Dr. Kevorkian in 1999 for second degree murder.  He had “helped” over 130 people die to relieve suffering.  Proponents of this law state that the current law is different from “physician assisted suicide” but I don’t see it.  How is something that a doctor was sent to prison for just 18 years ago now a law?

Nathan’s story questioned my beliefs.  I truly felt sorry for his sister and was relieved to hear her suffering was gone.  I had an internal struggle that started.  So it brings me to the question: Is it okay to end someone’s life it they are suffering? First what is suffering?  According to the dictionary it is a state of undergoing pain, distress or hardship.  We can treat all of these things and that is the goal of hospice.  In the end I have concluded that I cannot make the leap to accept or participate in this law because we have hospice which is specifically set up to relieve suffering and allow a comfortable transition from this life to the next.

So what will I do if someone comes through my door and asks for a life ending medication? Nathan’s story rocked me but I’ll have to say I can’t do it.  My conscience won’t allow it.  I don’t even know if I would be able to refer to a doctor who does because in my mind this could make me an accomplice.  I would hope I could convince this person of the benefit and beauty of hospice to relieve their suffering.  No matter the outcome I will lead with compassion and be there to the end as his or her doctor because abandonment would be the worst thing to subject someone going through that much suffering to.  I will care for, love and respect any and all of my patients no matter their feelings on this issue or others.

What are you thoughts in the issue?  Am I completely unreasonable? Do you have a similar story? I’d love to hear your thoughts.  Leave a comment below.

 


12 thoughts on “The End of Life Option Act: My Take”

  1. I am so glad as a doctor, you feel that helping people to be healthy is your job and that your conscience would not allow to help a patient die or even refer one to another doctor who would help. Life is sacred. Also that is why we have palliative care.

  2. This was a really good read. I have the same conclusion as you but for different reason. My moral opposition totally stems from my Christian faith. It’s actually quite a similar argument as abortion, actually. I am completely morally opposed to abortion and end of life act, but I 100% understand why people do both of them. I do not want my Christian morals to dictate US law (though it would be great if it matched!), but I hope they will never put physicians in a position where they must commit these acts of murder that go against their spiritual faith. Freedom of religion is something that is important to me, and I hope the law always accounts for practitioners who may oppose these sorts of acts.

  3. Very good article. While I don’t agree with you I understand what you believe is right. You said… “we have hospice which is specifically set up to relieve suffering and allow a comfortable transition from this life to the next”. Have you ever been with a family member in a care home long term?
    Two years ago my brother started the end of his life journey at Kindred Care in Auburn. Before he was a patient I had been at the bedside of both parents while they passed. My brother was in kidney failure along with a few other problems..possible cancer which they couldn’t confirm due to his illness. He has horrible gout that was in both knees, feet and elbows. He was in pain constantly. His care… it was as good as it can be in an understaffed Care home. He feel out of bed on three occasions that I knew about because they would not or could not put rails up on his bed. think of falling on knees so swollen from gout that you cant walk. When visiting I cleaned his tray, room and floor because it was filthy. Along with cleaning his nails which they never scrubbed nor clipped. I literally would gag cleaning at times.
    I met some wonderful people along his journey to heaven. They were Patients that gave me hope that he was being watched.
    Miss Judy, who rides her scooter all over kept watch on my brother and would let me know if there was a problem during the night. After 2 months there we had a talk. He had stopped taking his meds. My sisters were very upset. So we had a talk. I talked to him about what would make him comfortable and what would keep him going. This was after talking to his nurse. He knew his life was short and after so many years of pain he wanted to sleep and then go home to his wife who had passed 2 years before. I told him it was ok to not prolong things. He passed in my arms about 3 weeks later. His choice. But could the suffering been lessened ? Yes. Whos right is it to say when someone lives or dies? Is it better to have a safe death or one that is prolonged. I went back the next day which was Mothers Day to give Miss Judy flowers. She was there when I couldn’t be and for that I would do anything for her. I still go back each week. I teach crafts now or sit and talk or sing. I see people come and go. The agony that some go through…..
    Being a 3 time Cancer survivor myself I have often thought of this topic and am happy that there are choices I can make.
    It isn’t your choice but mine. But, it is your choice to give the meds. One day, come meet me at Kindred care and see for yourself what you would be living in at the ends staged of your life or your loved ones life.
    Miss Judy would be happy to show you around.

    1. Wow. I am sorry for what your brother went through. I agree with you that his situation should have been better. When done well, hospice does not need to be like that and can be a welcomed reprieve at the end of one’s life. Thank you for sharing your perspective.

  4. I understand your feelings on this. I wouldn’t want to be responsible for someone else’s death. However, hospice isn’t perfect. Most people that choose this, I feel, want to take back some sort of dignity. When you are lying in a bed or chair wasting away, with some person you don’t even know cleaning your excrement off of you, that is not beautiful nor is it dignified. I wouldn’t want to live this way. I have lost many people in my life. Bed sores, unconsciousness, not knowing if the person has adequate pain management it’s not pretty. I would rather not waste away, I would rather not inflict that pain and obligation upon my loved ones.

    1. Thanks for your comment. I agree that hospice is not perfect but in the right hands it can be a beautiful thing.

  5. I too understand your position, and respect it. However, I have had two experiences with loved ones being on the verge of dying. My Mom, who was diagnosed with colon cancer at the age of 92, had home hospice care. After the doctors did the necessary testing and we went to get the final results, the first thing my mother said to the doctor before even knowing what was wrong, was “what ever it is, DON’T FIX IT”. She was very adamant. My mother had only one experience with any kind of illness in her life (that’s not an exaggeration). She caught the Russian flu from my son, and she was the most miserable patient. It was her first experience with anything resembling a cold. However, she had been complaining for several years, that she really wanted God to take her. She wasn’t ill, but she no longer had the will to live.
    When we got the diagnosis of colon cancer, she was determined not to take any medication to “cure” her. Given her age & her wishes, she was placed on home Hospice care, with myself being the primary care giver. It wasn’t easy, but she was always made comfortable with medication to keep her out of pain. Finally, on the last day, her breathing became very shallow & somewhat labored. I called the Hospice Nurse & was told to administer more morphine, which I did. She was dead within 30 minutes. It wasn’t easy for me, but she got what she wanted, ending her life. And she did it with dignity.

    Last July, my husband was diagnosed with brain cancer. He is 83. His first reaction after receiving the diagnosis was, I don’t want any treatment. I’ve lived a long life and I really don’t want to go through this. He was told he had 5-6 months at best, but there would be no pain with brain cancer. He did however take several radiation treatments, just to see if there was a chance of slowing down the process. It didn’t. We spoke with all of the doctors concerned and they agreed that he was a candidate for the End of Life Option. He was examined by two doctors, given all of the appropriate materials and approved for receiving the medication.

    The End of Life coordinator from Kaiser Permanente, came to our home to explain how things would go and brought the medication to us back in October. When and if he takes it is completely up to him. He has chosen to wait until after the Christmas. He has had Home Hospice care throughout these months. Fortunately, he has no pain at all and has required little medication. But he is deteriorating more quickly in the last few weeks and is very unhappy with this.
    Sorry for the long tale, but I meant it to show that I don’t think this new law makes murderers out of doctors. No doctor is forced to participate. Those that believe in death with dignity do. My husbands primary care doctor would not participate. In the end my husband will or will not take the medication. His decision, and his alone. All the medical profession did was make it possible for him to stay in control of his own life, because it was what he wanted and had been determined to be of sound mind when the decision was made. And even though it’s brain cancer, he’s still pretty lucid and hasn’t changed his mind.

    If one’s religious beliefs prohibit their participation in this program, that is their right. But when an intelligent human being is suffering, with no chance of a cure, it is their right to chose their time and method of death and I think the medical profession should allow that to be possible. It certainly beats find your loved one with a bullet in their head or having jumped off the Golden Gate bridge, because very often that will be their solution.

    Thank you for tolerating my long winded tale.
    Suzanne Roberts

    1. Thank you for your candid comments. Your experiences with hospice and the end of life option act have been much more intimate than mine. I am glad your husband is not in pain and able to clearly make decisions. I respect his decision and pray that he has peace.

    2. A very good post…..I understand your thoughts and feelings. I will say you are fortunate to live where that option is available to your husband. In my home in SC it isn’t.

  6. I am a recently retired Registered Nurse with 30 years in the ER, Surgery, and my last 6 years in management in a Nursing Home. I have seen Physicians in states without “Assisted Suicide” laws at the request of family and also the patient, prescribe medications to allow the suffering to end in terminal cases. One of those patients was my mother in 2006. I feel it is a mercy being offered, but not one to be taken lightly. The “assisted suicide” laws are only allowing for a practice that already widely exists to happen without fear of legal consequences, so I support these laws totally. But at the same time, I also see your point and also support your decision to not assist or participate……the decision is a personal and moral one that each person……medical/family/patient……must struggle with and decide on their own. I do wonder if your opinion might change/grow as you practice longer and if that horrible decision ever touches you personally. Mine did.

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