"End of Life Choices"

Rev. Bruce Russell-Jayne
November 1, 2009

Reading:Living and Dying with Dignity, excerpt  by Ann McCracken
My mother's physician was a wise and caring man. When it was apparent that my mother was going to die, her physician moved her from the cardiac intensive care unit to a private room where we could be with her at all times. Her physician also told her he would prescribe her usual medications as well as medication for anxiety and pain. He told her that she was in charge, and that she could decide what pills or treatments she wanted to take.

We continued to involve my mother in life. One week before her death, my daughter graduated from high school.  Mom, who was her greatest fan, was very disappointed to miss this event.  Five days before her death, however, she was able to see a videotape of the graduation with my daughter by her side.  She was also able to give my daughter the quilt, sheets, and towels that would grace her room at college after her grandmother's death.

Each day we asked my mother what she would like to accomplish that day.  Then we set about making that happen.  One day it was to get a pepperoni pizza, most of which was eaten by the hospital staff.  The day before she died, my mother wanted to pay her bills.  Although the task took most of the day with many rest periods, she personally wrote and signed every check while we prepared the envelopes.  The day of my mother's death, she wanted to see two friends who were invited and came to visit. S he drifted in and out of the conversation during the short visit, but she seemed genuinely satisfied to have seen these good friends.

Sermon: End of Life Choices            by Rev. Bruce Russell-Jayne
Tomorrow, November 2nd, is a Mexican-American Holiday, the Day of the Dead, a celebration of deceased ancestors.  Sugar skulls are given and eaten for the Day of the Dead.  Tonight families will visit cemeteries where their loved ones are buried and decorate their graves with offerings including wreaths of marigolds.  It is a joyous and healthy way to address death, as can be Halloween I think.  Therefore, it is appropriate that we talk about death this morning.
 
The longer we live, the more death we will see.  In the 90s, when the mysteries of AIDS and the people who had it were beginning to unravel, Cece and I assisted a man named Mark dying of the disease, and we became personally invested in his process of dying.  There were things he and we could control, and things we could not.  We began to see holes in the medical and legal support systems for those living and dying with AIDS.  We began to advocate for changes in those systems and helped plug some of those holes for Mark and his living partners with our volunteer hours.  Caring for Mark helped me to see I would like my future work to be more personal in nature.

As a pastor, I have learned how to talk with people about death.  I don’t apologize for bringing it up on such a fine Autumn morning, it is not a topic we need to avoid.  Unitarian Universalists are usually very open in our approach to death and we have much to offer those who need help.

Not long before I arrived at Northern Hills Fellowship, the Rev. Annie Foerster delivered a sermon here entitled, The Legend of Kevorkian, in which she told of her involvement in the Washington state “Death with Dignity” ballot measure which would have made assisted suicide legal.  In that sermon, she told how she worked for the measure, then changed her mind and voted against it because she didn’t think people were ready for it.  She said all the talk during the campaign was about the fear of suffering, about our fear of dying without control, and there was not enough talk about death itself.  Now Rev. Foerster is not anti-choice when it comes to prolonging life artificially or any of the other important life decisions we might have to make, but she urged the congregation to learn to talk about death and how to prepare for it so that if and when a decision of ending life comes to us, we will be ready.  Listen to the poet Rilke:

“Oh Lord, give each of his own death,
The dying, that issues forth out of the life
In which he had love, meaning and despair.”
Rilke’s prayer is that each of us might have a death that is the right death for us, one fitting for our unique lives; lives which he also prays were full of meaning and a mix of joys and sorrows.  All of us who pray know, that what we wish for might not come to pass, but if we really want something to happen but we must do our part.  Even though the manner of our death may ultimately prove to be beyond our control; it will after all, be determined by the final disease nature inflicts upon us; to the extent possible, we should learn what we can about the predicaments we face as we approach death and work to ensure our choices are honored.
:::
Even though ministers try to make it more comfortable to talk about death and dying, people avoid it like the plague.  It didn’t use to be this way.  A century ago death was more present in everyone’s lives, and even though the disease processes were less understood, death itself was less fearful.  Since then, we have institutionalized death – given it away to the medical and funeral industries.  We don’t know how to handle it ourselves and in our families anymore.   It often takes a loved one’s ill-fated experience with death or dying to shock us into thinking about our own approach to death.  Like when one of my relatives was in a coma for months in the futile hope he might recover from a stroke until a doctor finally refused to treat his pneumonia to let him die.  At the time, I didn’t know what other options might have been available, but I could clearly say, “I don’t want that to happen to me!”  Once awakened to the possibilities that we or our loved ones may contend with a final passage that is more difficult than it should be, we are faced with the next question: “What am I going to do so that I (or my loved one) doesn’t have to die like that?”

Unfortunately, there are many ways for the process of dying and death to happen in ways it shouldn’t.  There are clearly some things we should fix  about the way we currently treat people during the final part of their lives.  For example, I was very proud of my former UU church for its sponsorship of the Chattanooga chapter of a funeral and memorial society.  Its goal was to help people save money by publishing information about the funeral homes, cemeteries, cremation and related services in the area.  At the time, the funeral industry lobbyists wrote state law without much input from consumers.  They were able to get laws passed which strengthened their monopolistic hold on funerals and related services and their costs.  I don’t want to say funeral directors take advantage of people, but it would be better to deal with them if you can when you are not under the stress of the recent death of a loved one.  In too many cases, people spend way more than they can afford on fancy caskets and other unnecessary services.  I would recommend that all of us make a plan for our bodies after our deaths - certainly before the need arises - but at a time when we can clearly express our wishes, compare costs of services, and tell our loved ones what we want.

I heard on NPR awhile back that with the recession we have been going thru, there are more unclaimed bodies in city morgues when poor families leave them there because they can’t afford funerals.   That story just broke my heart because it shouldn’t be this way, and I know it doesn’t have to be.  The funeral and memorial society found the absolute least expensive way to take care of the body of a loved one who had died and to have a lovely memorial service.  If anyone here wants to know, ask me later, and I’ll tell you how.  This is a service we at Northern Hills might want to think about providing to the poor in our area. 

Often the first things people do when they think about planning for their own deaths are choosing the songs for their memorial service or buying cemetery plots.  I’m not sure why this is so, but it seems ironic to me because we often avoid much bigger end of life issues which can make such a difference in the quality of our lives and the way we’ll be remembered.  For some, death comes suddenly, but for most of us, a life ending illness will take months or even years during which our life styles will change dramatically.  In my short time as a hospital chaplain, I worked mostly with seniors – who make up the vast majority of the hospital population.  That experience gave me a view of my own future and all of our futures – as we age, and I began to think a lot more about how I might deal with the issues we face.  When I see my mother’s crippling arthritis, then feel the beginning twinges of it in my own hands, I talk to my doctor about what I can do for it.  We put off talking about these things at our own risk. I learn so much from seniors about how to handle physical disabilities and other losses with strength and grace, and I am determined to help make life better for seniors.

I have visited church members and family members in many different senior residences, and most of them are very nice.  The quality of care for Cece’s mother in a  home which specializes in Alzheimer’s care is much better than anything we knew to do for that disease even just a decade ago.  But, I have also visited people in nursing homes that are not very nice – it all depends, right now anyway – on what you can afford.  For those of you are too young to worry about the diseases of the aged, maybe you can start thinking about out how we will pay for assisted living and nursing care for the millions of additional people who will need it in the next 20 to 40 years.

The debates over paying for Healthcare have brought up many ethical issues such as: “What is an appropriate level of care for dying people?” and “Is it OK to bankrupt the dying to pay for their care?”  Right now, we ration healthcare by a person’s ability to pay.  Is that what we want to do in the future?  I, for one, don’t think so.  We really do need to change the way we deliver healthcare in the US.  On the other hand, one area we should expand is Hospice.  It has proven so effective and such a welcome alternative that Medicare is more than willing to pay for Hospice care. As we age and near death, we lose more and more control over our lives.  Hospice, and programs modeled after it are excellent ways to give people a little bit of control back when they need it most.
:::
The insert in your Order of Service entitled, “A Dying Person’s Bill of Rights,” brings up the main point of this sermon on the ethics of dying: “When it comes to dying what are our rights, and how do we enforce them?”  To illustrate different ways folks approach this question, I’ve asked Bruce Beisner’s permission to use the question he had to answer on his ethics term paper for a class he is taking at a Catholic university.  He had to write what a Catholic priest would say versus what a Utilitarian philosopher would say and in the following scenario.
A man’s wife was suffering with ALS, often referred to as Lou Gehrig's Disease, a neuro-degenerative disease in which a person progressively loses control of muscles, but whose mind can remain quite active.  When she could still talk, she had asked for a feeding tube, which had been in place for some months, but now she was unable move her body or to communicate with others.  She could lie in this state for an indeterminate period of time before ALS eventually took her life.  The woman had not signed a Living Will or Durable Power of Attorney for Health Care, so the doctor asked the husband, her next of kin, to decide whether to remove the feeding tube and let her die.
I can guess that the Utilitarian, whose guiding premise is, “We should do things that give the most benefit for the most people in society,” would quickly say that continuing the woman on life support would have little if any benefit to her or to society.  The priest, on the other hand, would say, “All human life is sacred; God determines when we die,” and therefore the husband must leave the feeding tube in.  If he had it removed he would be hastening her death, possibly depriving her of a chance of a deathbed redemption thereby committing a mortal sin.  Now, obviously, I have over-simplified the positions of these two.  I’m sure Bruce’s term paper will explain their respective arguments in much more nuanced detail.

These differences of opinion about how to approach such important life and death questions is what makes health care ethics so interesting – and so maddening!  The Philosopher and the Priest each arrived at their positions through a rational analysis of the situation and following the precepts of respectable systems of logic which are adhered to by millions of people.  What would a UU advise the husband, and could the UU base her advice on a similarly respected philosophical and/or religious moral system?  To answer the second question first, as a matter of fact, she could – and that moral system is summarized in our Principles and Purposes.  The first time people hear the 7 Principles, the typical reaction is, “Those sound pretty good.  Who wouldn’t agree with them?”  One reason for that is they are very similar to words in the US Declaration of Independence and Constitution and to principles we live by in American society.  The logic behind our Principles goes much deeper than that, but I won’t give further explanation for them this morning.

What a UU would advise the husband is to do what his wife would have wanted done to her in this circumstance.  And by the way, that’s what the law says, too.  The UU 1st and 5th Principles, would stand behind her, him, and the law: “We affirm and promote: The inherent worth and dignity of every person, and the right of conscience and the use of the democratic process…”  Applying our Principles to all medical issues we would say, “We believe each person should have the right to choose what to do or have done to her or his own body.”  As a UU minister I would advise the husband to reach into his memories of what his wife has said and done that would give him the best idea of what she would have wanted, and then do that and not what anyone else would have him do.

Since a 1988 general resolution, the Unitarian Universalist Association has considered it a right of terminally ill patients to select the time of their own deaths.  But in America a thing does not become a right until enough of us agree that we want everyone to have that right.  The right to choose how and when we die does not exist in Ohio, yet.  Our UU perspectives on Health Care and other issues relating to death and dying are sorely needed here.  Without our voices, who knows what moral system will determine state laws.  People from First Unitarian Church in Portland were instrumental in bringing about Oregon’s Death with Dignity law.   We are the UUs who can make a difference in Ohio. 
:::
In his book, How We Die, Dr. Sherwin Nuland writes, “There is often a serenity-sometimes even a dignity-in the act of death, but rarely in the process of dying.” Having any kind of control over the circumstances of our deaths requires each of us to learn quite a lot about the ways of sickness and dying, but even if we do all we can to prepare, only a few of us will spend our final hours peacefully taking our leave from loved ones.  Realistically, the rest of us will have to make do with retaining as much control of our lives as our dying allows us.  

So, while we should do what we can to make the process of dying more dignified and to honor the choices of the dying, the dignity we hope for in death must come from the dignity with which we have lived our lives.  Preparing ourselves for death requires a life-time of creating the memories which will live after us.   “The art of dying truly is the art of living.  The honesty and grace of the years of life that are ending is the real measure of how we die.”   I close with lines from the poem, “Thanatopsis,” in which Unitarian William Cullen Bryant advises us to live our lives so we can go proudly when we go.

“So live, that when the summons comes to join
The innumerable caravan, which moves
To that mysterious realm, where each shall take
His chamber in the silent halls of death,
Thou go not, like the quarry-slave at night,
Scourged to his dungeon, but, sustained and soothed
By an unfaltering trust, approach thy grave,
Like one who wraps the drapery of his couch
About him, and lies down to pleasant dreams.”