July 25, 2011

Controlling the End of Life: Commentary from Brad Woodward

Thanks, Brad, for this contribution.  --John

We often see lamentations that those of us outside Oregon, Washington, and Montana cannot get a doctor's assistance to hasten our deaths when life becomes unbearable during a terminal illness. In an ideal world, we'd all get that help to die a peaceful and dignified death at the time of our choice. But we don't live in that world. And we don't die in it, either. That doesn't mean there's no hope or control at life's end. It simply means taking personal responsibility. Don't look to a doctor, a spouse, or a friend to do the hard lifting for you. Do it yourself! It's wonderful if someone willingly and without reservation decides to help you. If others close to you are hesitant, what right do you have to place them in a terrible moral, ethical or legal dilemma because you have failed to prepare and do your own research?

Hastening one's death is doable without the aid of a doctor, with the help of an organization like Compassion & Choices (www.compasssionandchoices.org, or 1-800-247-7421). They can provide information and counseling in a discrete, loving, ethical, and legal manner to those who are terminally ill. But the imperative for action is yours alone. You must be mentally and physically capable of taking action -- making the decision (a true act of courage), planning, organizing. Fortunately, most people will never want or need to hasten their own deaths. Even in the three states where physician assistance is legal, only a relative handful have used the option. Most people find they can bear their final illnesses, making adjustments day by day, driven by the incredibly powerful will to live and man's phenomenal ability to adapt. Those who prepare for hastened death, but who don't ultimately take that step, still get great comfort from knowing they have an "out" if life is no longer liveable. But for the few who do choose that step -- for whom the quality of life has become unbearable -- there is hope. It requires the courage to act on your own while you have the mental, emotional and physical capacity to act -- to willingly give up a day or a week of miserable life at the very end. To say no to being kept alive to the last possible breath when all pleasure and quality of life is gone. To refuse being swept along in the great American death machine. No decision is more personal than how we choose to die. Why then do we let government, religion, society, friends and family bully us into dying the way they think we should, not even asking what we might want for ourselves?

Sadly, people who live their lives with the utmost responsibility feel no obligation to die the same way, as if they have no role to play in what's to come. Baloney. Here are steps every dying person can take to greatly enhance the quality of the days they have left, and the lives of those close to them:
  • Make a will, even if you're young and healthy today. Dying without one leaves a terrible and costly mess for your heirs to clean up. Consider putting assets into a trust. That can greatly cut the "death tax," reduce the complications of probate, and leave more money for your heirs. If you want someone to have cash, put it into a joint account that immediately becomes their property upon your death.
  • Complete an advanced directive stating your wishes about being kept alive with artificial nutrition and breathing if you have no prospect of ever waking up and regaining a decent quality of life. If you don't want tubes, talk about this frankly with those will have to make a decision for you. Take them off the hook. Let them know it's okay to pull the plug without guilt. I've prepared a letter for my "plug puller" telling him not to take a chance that I'll wake up into a horrifically debilitated existence. The choice is mine, and I choose the certainty of a peaceful death over the one-in-a-million chance of miracle recovery. If you do want the tubes, of course, that is your right.
  • Name a health care proxy, someone who can make decisions for you if you're no longer able to make them for yourself.
  • Give power-of-attorney to someone you trust to manage your finances and other affairs prior to your death if you're no longer able to do so.
  • Educate yourself about the wonderful benefits of hospice care, usually given in the home, that can greatly ease the burden of your final days on both you and those close to you.
  • If hastening your death interests you, do your research and prepare while you still have your strength and mental abilities. There's no harm in preparing "just in case," even if you never choose that course. If you wait, however, it's possible that when you desperately need relief, you won't even have the option (other than voluntarily stopping eating and drinking) -- and nobody else will be able or willing to make the arrangements you failed to make for yourself.
  • Speak frankly with your doctor, family, friends, and loved ones about your end-of-life wishes and options. People don't know what to say to a dying person, so they say nothing at all, or avoid visiting and conversation altogether. They will likely welcome your bringing up the subject and taking the lead, guiding the discussion and rescuing them from a very awkward position. Discuss pain management and palliative care with your doctor. If they're unwilling or unable to keep you pain-free and comfortable, consider finding someone else.
  • Clean up your affairs -- financial and otherwise -- while you have the chance. It is selfish and unkind to evade your responsibility to deal with your own "issues" (like a house full of junk) if you have the capacity to do so, shifting that burden to others after you're gone.
  • Plan and pay for your own funeral, burial, or cremation.
Most of this discussion has been aimed at those who have the burden -- or luxury -- of knowing they're going to die in the near future. But some of us will die suddenly, often many years before "our time" has come. Look at the obits any day and see all those under age 60 who died "unexpectedly." All adults, at every age, have the same responsibility to prepare for that possibility, even if we do live in a society that denies death and hates to talk about it. At a minimum, everyone should have a simple will, advanced directive, and health care proxy. It's irresponsible to tiptoe through life pretending death won't come, condemning those we love most to make heart-wrenching decisions, suffer financial deprivation, and shoulder the burden of estate hell -- all because we failed to prepare.

In summary, there is no need to be a passive bystander at your own death, to sit idly by while events unfold around you. You can take control -- and must. Make no mistake, there is a giant industry out there waiting to profit from keeping you alive as long as your poor body can hold out, draining every penny you ever saved, ruthlessly and blindly putting quantity of life above quality. That is the "default" position in your society. If you do nothing, that's what you get. Please know there is another way, but only if you take charge and take responsibility for yourself.
As a volunteer counselor to the terminally ill, Brad Woodward has witnessed firsthand the suffering that can result from lack of timely advance attention to end-of-life issues.


Jeremy said...

A thoughtful piece. Thank you, Brad. I wonder: does (should?) opinion about this issue mirror the response to abortion? There ARE differences: end of life vs beginning of life... one's own life vs another's. Still, from a religious point of view, if someone opposes abortion ("life begins at conception"), wouldn't s/he also be compelled to oppose "pulling the plug," however reasonable that action is made to seem? Don't both procedures deprive a human organism of life? Don't both "interfere with God's plan"?

I'd be very grateful for others' thoughts here.



Lilith said...

To Jeremy -- good question.  as a godless heathen (or "enlightened humanist" ... you pick), i suspect a person's views about abortion and end-of-life plug-pulling are apt to align.  for me, both involve the right to... the power of... informed choice.  i don't want anyone, governor or god, to prescribe my actions in these intensely personal realms. 

John Schappi said...

Thanks again to Brad for this provocative post.  It's reminded me that the executor on my will is still waiting for me to gather together information that would help him when my time comes. I'll run a post later on recommendations for the "before I go, you should know" records.   Then I'll try to follow the recommendations myself! (I think I hear a cheer from my executor.)

John Schappi said...

A dear friend and neighbor who didn't want to be identified by  name sent this comment on Brad's "clean up your affairs" suggestion:

to preparing for dying, I'm doing that this week by reading and acting on the
advice in a book called "Unstuff your Life" about decluttering.
 I'm doing it for two reasons: the obvious one is to get rid of stuff so
that my space and life are more manageable and so that my children won't have
to wade through all the clutter after I'm gone (that's one reason).  The
other is that between now and then I want to have much more time to focus on
relationships and on developing as an artist in stead of spending my time with
stuff.  Too many clothes, too many bowls, too many seed packets....
 One thing that resurfaces here from time to time is a small book you
loaned me (perhaps a decade ago -- horrors!) called something like "Living
Simply."   I'm still trying to learn how to do that, and it's high on
my agenda as I prepare to die.  I don't expect to check out of here
imminently, but all the more reason to make time to do what's important to me
rather than dealing endlessly and until the end with all the material stuff
that crowds my space and mind.


for the topic, and for sharing so much of your optimism, experience, strength
and hope.  


Mswope99 (Margie) said...

So many people are for or totally against taking control of ending one’s own life. My opinion is this is a personal choice, just as abortion is.  What I have done to show my family my love is having my living will, my will, durable power of attorney and all legal documents and directives completed and reviewed every other year. I have all my funeral directives including the musical CD’s of what I want at my funeral. I have the money for my cremation and all documents in our safe deposit box, my husband and I share. We have given our children authorization for the safe deposit box upon our death, or if we are incapacitated. I have all of our financials and all important documents placed together in the safe deposit box.
It is hard enough when one looses a family member, and it is important for me to have everything together and legally finished to make it a little easier for my family. As for the way we leave this world. The fact is: We live a lot longer now, and doctors can keep your body alive, but what agony one goes through, only that person knows.  This is between that person and God.  As for me, I can say, today and tomorrow, I would never take my life in my own hands. But as the time passes, and my pain becomes unbearable, I won’t know until, or if that time comes. But the information is valuable to have. It is not up to me to judge someone’s choice.