Affirming Life (Why My Vote is 'YES' to MA Question #2 - Death With Dignity

*As part of our commitment to promote civil discourse on complex issues, the Marblehead Ministerial Association held a panel presentation on A Question #2, Death With Dignity. Member, Rev. Susan Morrison moderated.  Panelists included Rabbi David Meyer, Dr. Kerry Pound, Dr. Suzana Makowski and me.  What follows are my comments.

For me, this isn’t a question about death.  It’s a question about life.  How is it we want to spend the last minutes of living, who gets to choose and what our options might be.  Having sat with so many people during their last days of living I have enormous respect for the wish to be able to choose how one spends those last days.  While science and medicine have made enormous strides in pain management, some people endure hideous endings.  Certainly, for some, a wish to live as long as possible and to die 'naturally' is a cognizant choice.  I have watched people go to extraordinary lengths to live longer and dip into stores of unimaginable strength to bear pain.  I have admiration for those people.  It was their choice.

I have also watched people give up on life with what seemed to me, too little fight.  People who said no to drugs, to treatment, to what some might say was life.  It took more work for me to find admiration for those people, but I did, because it was their choice. 

And I have watched people all along the spectrum.  Those who tried one more thing so they could live to see a grandchild’s wedding.  Those who survived rounds of chemotheraphy to the benefit of their health but who told me privately “I will never do that again.  It wasn’t worth it.  If I had known, I would have opted out.”  I had and have admiration for each because it was their choice.

We live in a complex world, made more complex by science.  We are faced with scientific capacities at times ahead of our ethical, moral and spiritual capacities.  We have living wills, Do not resuscitate orders, and hospice care.  But what we have always had is choice.  Whether it was legal or not, people have been choosing all along.  In conversation with a relative I just found out an uncle dying of lung cancer had a stash of pills under his mattress – almost 30 years ago.  The Hemlock Society formerly began in 1980 seeking to provide information to people and supporting physician-assisted suicide.  The opportunity we have today is to stop seeing this choice as criminal or morally less-than whole or cowardly.  Our current system is cited as protective but it, in fact, criminalizes a path many already take to alleviate horrific suffering.  This places an unnecessary pain upon family members and friends. It often requires the loved person at the center to hide pain, hide pills and ultimately, hide their death.  All this at a time when, in the healthiest of circumstances, we are surrounded by those we love, supported in all we wish to do and held as we complete our living.  To have our last living marred by a denial of a valid choice is not life affirming.

I’d like us to stop even seeing it as suicide.

Dying is a part of our living.  It comes in many forms.  We see murder as a horrific assault to life.  Suicide as a sad ending.  Accidents as tradgedies.  Each are different endings and invoke different emotions.  Dying as we approach an inevitable ending is its own kind of ending and one that uniquely invites our cognizant and informed involvement – should we so choose.  For those whose final days, weeks and month include great suffering, that involvement can be life affirming.

I will tell you that I had some serious questions as I approached this vote.  I have had close ties with the special needs community all of my life.  I spend 6 hours in a pool with children with special needs each week, coach children, youth and adults on a special Olympics swim team and lead an interfaith worship group specifically designed  for people of all ages with special needs, their families and friends.  I worry about the existing abuses in this community and know it to be an historically marginalized at-risk community.  The questions I took to this question, question #2, was where are the protections?  Does passage increase the risk to this population?  Does the benefit extend to this population?  My conclusions are that we need continued vigilance in our entire society toward the protection of marginalized communities, we need to root out current abuses in elder homes, homes for those with disabilities and in medical facilities and schools.  This bill neither solves those problems nor increases them.  It is my hope that it encourages greater levels of attention in that larger system.

And now, I want to speak as a daughter.  My father struggled with Multiple Sclerosis for over a decade.  He died just four years ago.  I say struggled because it was a struggle.  Emotionally, physically and spiritually.  I watched him lose things each year.  We all did.  We watched a man who skied, sailed, walked to the beach with his grandchildren, danced beautifully, walked, traveled, carved wooden ducks, filled his many birdfeeders, go out to lunch with his friends, the Romeos (Retired Old Men Eating Out) lose these things and mourn each one.  With each loss came some sadness, some depression, some adjustment and then he would live on.   As is the case in many families, we each played different roles.  My mother, his beloved, still danced alongside him, as beloveds do, focusing on what he could do, how to support him best, even learning to administer shots and other medications.  Me – he chose me to talk about pain.  In quiet moments when it was just the two of us, he would say ‘the worst thing, the very worst thing is the pain.’ It could be hideous. He told me once that he had a stash of pills.  All I did was listen.   I think his doctor knew.  They may have even discussed it.  He never used those pills.  But it meant something to know he could.  That if the pain became too great, he could choose to complete his living, on his terms.

This was a man who had the very best medical care.  Team Ted was grand.  He had pain management.  He had an integrated team who spoke to each other across hospitals.  He had a close and loving family able to provide anything he needed for comfort.  He was strong.   And he wanted to have the choice to say the pain is too great.  I’m done.

Was he depressed?  Who wouldn’t be.  And that depression was treated during his illness.  This bill invites a close look at depression.  But I also want to speak about our rights to our feelings.  Depression from a loss of the ability to travel or the loss of the ability to ski is something to seek help in getting over.  I think we all can see that.  Depression from the loss of driving, the loss of dancing with your beloved.  That’s harder but surely, help getting past that sadness is welcome.  I think we can probably agree on that as well.  Depression from losing the use of your legs or being able to speak.  Now we’re in tricky territory.  That’s pretty depressing even to say.  I think folks in that territory have some heavy lifting to do and I hope they want help doing it, but I can’t say you ought to get past that.  But I am clear that when it comes to depression because I’m about to die.  I support feeling the depth of that emotion.  It’s real, it is depressing.  It’s sad.  It’s full of I’m leaving all this beauty.  I cannot find anything to be ‘fixed’ or gotten over.  For me, the worry that someone’s depression at that point will cloud their decision is one thing, but the answer isn’t to change the depression, it’s to be sure they are clear on their wishes as they move forward.  The assumption should not be they are choosing to end their living because they are sad.

A couple of weeks before my dad died, I watched him in agony at the hospital.  He then slipped off into a nonresponsive state.  After some time, Hospice was engaged and we were preparing to have him moved.  Suddenly he popped back into our lives.  He lived for a bit more.  Did we take advantage of those moments?  Of course we did just as we treasured each and every moment leading to his death.  But had he chosen to use his pills two weeks earlier who would have been robbed?  Us, for not having those final goodbyes?  Us, left wondering what if a discovery were made that next week that would help cure MS?  Me, because I wanted my Dad to live forever? 

For me, the spiritual question is not how can it be okay for any one of us to decide when to end our lives.  Rather it is how can we find the generosity of spirit and the strength to affirm when a loved one says ‘it’s time to end my suffering.  Please tell me you love me and then show me by letting me go.”