Monday, October 20, 2014

Should We Have the Right to Die?

Where do our personal freedoms begin and end? In this country, we pride ourselves on having many rights, but do we have the right to end our lives?

The answer isn't as simple as you might think.

Brittany Maynard has reopened this topic for discussion. She has urged people to start having the tough conversations about what their wishes for the ends of their lives might someday be. She had shined a light on the realities that those facing terminal diseases deal with, particularly those who aren't willing to wait out the process without interference.

Brittany Maynard, a 29 year old, has brought this issue to the forefront because she's made the decision not just to end her life, but to open up her reasons for doing so publicly. She was diagnosed with glioblastoma, a terminal brain cancer earlier this year and given a short period of time to live. She moved, along with her husband, to Oregon, one of the only five states that allows a patient some degree of control over their own death in situations like hers.

She decided to come forward publicly with her plans when she realized that most people in a position like hers do not have the ability to end their lives with dignity. As soon as her story began to circulate through the media, it seemed that everyone felt compelled to comment on her situation.

Some understood her choices, some thought she'd given up, some urged her to seek alternative treatments. Some told her she was making a mistake, some urged her to turn to faith, some wanted her to get another opinion. Some just said she was depressed.

As the famous line in The Fault in Our Stars says, "Depression isn't a side effect of cancer. It's a side effect of dying. 

What Brittany hoped and hasn't happened, at least not that I have seen, is a widescale conversation about the right to die generally. People have focused on the specifics of her situation alone, missing the larger point.

She wanted to open a larger dialogue, not have people all over the world tell her that she's wrong.

She didn't ask for public input, she didn't post a poll about who supported her and who didn't. She opened herself up to criticism and commentary voluntarily, but it never ceases to amaze me how much people will try and insert themselves into the choices of other people when clearly it is none of their business.

There were even open letters to Brittany posted all over the internet from people trying to advocate whatever their position was.

Her choices are hers, this journey is hers alone. None of us know what it is like to be her, having to deal with the diagnosis she faces. I've been told that the particular tumor she has results in a great deal of pain, along with other horrible side effects, before it finally takes the life of the person suffering from it.

I honor her choice to end her life in the manner she sees fit, at a time when she deems it to be appropriate.

Then again, my own grandfather was a member of the Hemlock Society long ago, and I was raised to advocate forcefully for the right of individuals to make these choices.

Already planning to write about this, I came across a story last night on CBS highlighting another aspect of the issue. A story about a woman named Barbara Mancini, her father Joe and the end of his life, an ending which law enforcement authorities deemed criminal. Barbara was investigated in the death of her father because he asked her to hand him the bottle of morphine he had been prescribed and she gave it to him. 

Joe was ill with a laundry list of conditions, and he was tired of it all. After taking more of the morphine than he was prescribed, he sat with his daughter and talked. A hospice nurse visited later that day, and Barbara told the nurse that he had asked for the bottle, which she had handed him, then he had drank some.

The nurse contacted the authorities. Joe was taken to the hospital against his wishes where he lived four days with interventions before finally dying. He attempted to remove the wires at least once in those days.

He didn't want to die in the hospital.

Barbara was arrested. Over a year later, the charges against her were dismissed, but the case took its toll on her financially and emotionally.

Her father didn't tell her that he intended to kill himself prior to her giving him the morphine. They both knew that he was dying anyway. Her crime, aside from being a compassionate daughter who just wanted to spend those last hours talking to her father, was that she didn't call 911 and tell them that he had overdosed.

The five states that allow death with dignity require the involvement of clear wishes that have been discussed with a physician. They all vary slightly in effect, but none of them permits the involvement of a third party in the manner of death. The patient must be able to end their own life without assistance and must find a physician willing to prescribe the medications to be used.

Any involvement by friends or family can be cause for arrest as it was for Barbara Mancini.

In this country, we champion HIPAA. We talk endlessly about patient rights and autonomy. We want to believe, in fact most people probably believe, that we have the ability to make our own decisions about health care treatment in this country.

Spend any length of time in a hospital and really pay attention to what is happening around you, and you'll quickly realize that isn't the case.

Even when individuals write out their wishes ahead of time, even when they choose an agent to make those decisions on their behalf in the event they are unable, there is no legal requirement that health care professionals must adhere to those wishes. Without proof of the documentation, those wishes mean nothing. Even with all the necessary paperwork, those wishes can be (and frequently are) overridden, erring on the side of treatment in a patient who would otherwise refuse consent.

I've seen it play out personally, where a patient that doesn't want interventions is connected to every machine known to man to keep them alive. Lives prolonged when there is no chance of recovery.

When my own father was on hospice, we knew that him signing the DNR wasn't good enough. He had to avoid going to the hospital for any reason if he wanted his wishes adhered to. There was no way that we could call 911 for any reason if he wanted to be home at the end. We knew that.

Many people don't understand that. I can't even tell you how many families I have known that experienced something awful at the end of a loved one's life. The process of death isn't always linear and can be disconcerting to those unfamiliar with the process. There tends to be a period of irritability that prompts some to call 911. Sometimes a family member is in denial and calls. Sometimes they don't want to honor the wishes of the patient and want heroic measures taken. Sometimes pain isn't being managed correctly.

Regardless of the reason someone dials 911, once that call is made, there is a chance the wishes of the patient aren't going to matter all that much anymore.

We don't talk about death in this country because it makes us uncomfortable. We'd rather have unyielding faith in medicine, in the idea that everyone can be fixed and cured and saved.

Death is part of life, and if we don't talk about it, people we love, maybe even us ourselves, are going to die in a hospital connected to machines regardless of what we want.

Those facing a terminal diagnosis are in a place that those of us who haven't been can't possible understand. We are not in any position to judge their choices, to tell them that they are wrong, to urge them to keep living simply because we want that.

Life isn't just about the number of days someone lives.

It's about the quality of those days.

When someone decides the scale has tipped, who are we to say they are wrong?

Most who argue against death with dignity do so for religious reasons. The inherent flaw in those arguments is that not everyone has the same faith system. What one believes isn't necessarily what another believes. Our laws are not based in religion, certainly not in any one faith. Whether a religion condemns suicide or not shouldn't be a factor in the creation of laws. While we all have the right to our beliefs, none of us has the right to impose our beliefs on someone else.

The states that permit death with dignity have processes in place to ensure that patients are indeed terminal. They all have some level of psychiatric examination involved to ensure that the patient isn't just depressed. They all require that the patient communicates their wishes clearly to the medical professional.

Five states get it. The people living in the other 45 need to push for these laws as well. We need to talk about death, we need to accept that it is the only thing certain in life for us all. We need to understand the futility of treatment at the end of life, and how much our society is burdened with the cost of providing care to people who are never getting better. We need to honor the wishes of those who are done and allow them the means to go if that is what they choose.

We believe in the humane treatment of animals without question, but for some reason we stubbornly insist that life in any capacity is the goal for humans.

Watch someone dying, watch someone suffer. You just might change your mind.

Life is beautiful, death can be too.

I wish Brittany, her husband, her family and her friends peace and strength on this last part of her journey. 

1 comment:

  1. I am so grateful to Hospice for clearly explaining to us that calling 911 as my uncle lay dying of metastatic lung cancer would result in unwanted intervention. At least in my state of Connecticut, first responders must apply first aid protocols, including CPR. We were instructed to call our Hospice nurse instead. As a result, this wonderful man died peacefully at home (thanks to liberal morphine use) rather than painfully in a hospital.


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