"Mulla Nasrudin, the wise sage, crept around in the dust, inspecting the ground. His persistence caused another man to stop and ask, "What are you doing?' Mulla replied, "I have lost the key to a great treasure and am trying to find it here.' "A great treasure?' exclaimed the man. "Let me help you search for it.' A woman passed on the way to market. Seeing two men crawling around in the dust, she asked, "What are you doing?' The man replied, "We are searching for the key to a great treasure. It has been lost. I am helping this sage to find it.' "A great treasure?' exclaimed the woman. "Let me help you search for the key too.' A large caravan came along. The head camel driver stopped and, seeing three people crawling around in the dust, inquired, "Why are you crawling on the ground?' The woman replied, "We are searching for the key to a great treasure. It has been lost. I am helping this sage and this man to find it.' "A great treasure?' exclaimed the camel driver. Like the others he thought, "Perhaps when it is found we can share it!' He invited everyone in the caravan to help. "Let us all assist you in this important task!' A large crowd now crawled around in the dust, looking for the key. After a long while of unsuccessful searching, a young boy asked Mulla Nasrudin, "Are you certain that you dropped the key right here?' Mulla stopped poking in the dust and replied, "No. I lost the key somewhere inside my house.' The crowd stopped searching, stood up and asked, "Then why are we wasting our time looking for it outside?' "That is an excellent question!' Mulla replied. "Your insight is clear! It is too dark to look for the key in my house. There is far more light out here. " (As told by Heather Forrest in Wisdom Tales)

Moral of the story, or one of them? When looking for answers, it is important to know that where you look will determine what you find. So it is with end of life considerations. Not an easy subject to talk about and think about, but sickness and death are parts of life. May we live our lives and approach our deaths with intentionality, so that both our living and our dying may reflect the best of ourselves. May our living and dying feed and nurture our spirits and the spirits of those around us.

The title of this sermon is "It's Not Just About a Health Care Proxy.??? Important as that is. Considerations at the end of life, or for a serious illness or condition, are about more than having a health care proxy in place. Thinking only in terms of health care proxy is, for me, like Mulla Nasrudin looking outdoors for the keys he lost indoors. Today I want to explore some of those other considerations, offer questions for you to ponder and to look for answers in a variety of places. But before I do, a few words about health care proxies.

For those who may not know, Health Care Proxies are legal documents in New York State and, when properly filled out and witnessed, they allow us to designate one or more people to make health care decisions in our place if we become incapacitated, either temporarily or permanently. They apply in all cases when decisions need to be made and not only for terminal illness. Thus it is very important for each of us, of whatever age or state of health, to designate a health care proxy in the event we ourselves are unable to make our own decisions regarding our care. I am passing out the forms, please take one if you'd like. The form allows you to specify your wishes so that your proxy can follow them. You should keep a copy for yourself, give one to your family and your designated proxy, give one to your doctor, and even have one on file here at the congregation if you so desire.

The ability to specify our wishes for heath care, even when incapacitated, affords us an opportunity to make choices according to our values and to retain some control over our lives. That's a good thing. At the same time it behooves us to remember that we cannot control everything. Advances in medicine render too much detail unhelpful in a health care proxy. The treatment that appears unacceptable today may become routine in the future. Secondly, we cannot know for certain what we will want when the time comes. What may seem unbearable to us now may not seem so in the living of it. The health care proxy, therefore, represents a considered, but incomplete, judgment of our preferences and wishes.

Further, health care proxies, although they refer to an individual, are not individual things. When we designate another person to make decisions on our behalf, we are asking something that could be difficult, uncomfortable and even gut wrenching for them. Many of us ask family members: adult children and/or partners; or close friends to serve as our proxies and when we ask, and when we agree to serve as proxy on behalf of another, it is helpful to recognize the potentially emotional nature of what we might be called upon to do. It is one thing for me to say pull the plug if I am so injured that I have little or no hope of recovery. It is another for my son to do so on my behalf. Any of us who has served as a proxy and had to make the hard decision knows the cost. I've tried to factor this into my health care proxy by not only specifying my wishes but also noting that it's okay for my proxy to take some time to get emotionally ready to carry them out, if needed. We may know what we are asked to do but we might not be prepared to do it. Further, health care decisions affect more than the patient and the proxy. They also affect family and friends. I have watched designated health care proxies take time to let other family members and friends become emotionally ready for the decisions to be made, and their consequences. The one who serves as proxy balances the needs and wishes of the patient with his/her own needs and wishes, and might take into account the needs of family and friends. To serve as a health care proxy for another person is a great kindness and a great responsibility.

And it's not just about health care proxies. What other considerations exist for all of us facing end of life and/or serious illness? And for those of us not obviously facing that? One consideration is our relationship with the medical professionals in charge of our care. This is not only about competence; it is also about respect and communication and availability. For those of us who watch ER on TV there is an old episode about an alcoholic suffering severe bleeding of the esophagus as a consequence of the failure of his liver. At first the doctors talk over his head, discussing the various treatment options. He insists that they not only include him, but call him by name. Then they decide that by inflating a balloon in his arteries they can put enough pressure on them to stop the bleeding. One of them judges him and blames him for bringing it upon himself and openly questions why they bother to do anything for him. They don't ask for his consent before they begin but he stops them again, demanding an explanation and prior agreement. They do the procedure but it doesn't work. They ask him if he wants a Do Not Resuscitate order. He doesn't know what that is. They don't explain and in his confusion the man indicates that he wants everything done to keep him alive. They bring in the specialists, prepare to put him on kidney dialysis and to perform some surgical stuff while awaiting a liver transplant. Again they talk over his head. Again he stops them and insists they explain. Now that he 's had a little time to absorb the extent of his condition and the chances of survival, he declines further treatment. They try to talk him out of it. He persists and they withdraw. In his final hours he takes some time to review his life. He dies peacefully, but sadly.

I don't know if this program presented the medical information accurately, but it did present the human interactions that can and often do occur in hospitals and with the medical profession. How do we maintain our worth and dignity when faced with serious illness and/or terminal illness? Who are our doctors? What do we think of them? Do they listen carefully and pay attention to who we are? Is preservation and elongation of life the only consideration or do they show some flexibility regarding our wishes and our treatment decisions? I once changed doctors because the surgeon kept yelling at me, I mean over a period of months, for a decision I made not to accept a certain treatment. I found another surgeon. She didn't agree with me either, but she disagreed respectfully. Do our doctors help us make decisions? Help us weigh the circumstances and the options. Give us the information we need as best they can? Do they share with us what they would do if they found themselves in our situation? These questions arise out of our inherent worth and dignity as persons. Illness and/or approaching death does not take away that worth and dignity and neither should those charged with our care. Not that they do so intentionally. There are sometimes competing values. For those on the medical side of it, the primary objective is to either treat the illness with an eye toward cure and/or do everything possible to prolong life, unless directed otherwise by the patient or his/her proxies. That, in general, is a very good thing. But for the patient, the prolongation of life per se, certain types of treatment, even a cure, may not be the primary objectives. In this regard it helps to have advocates, or medical companions, who will accompany you to doctor visits and take notes and write down the answers to questions and organize other help and deal with insurance companies and doctors' offices and generally provide stability and support and calm. I want to train people who are interested in doing this and to an extent the members of the Caring Committee provide some of these services already. Which leads us to another consideration. What do you think about quality of life? What does that mean to you? For some of us it means doing everything to save or prolong our living. For others, different factors come into play. There needs to be a recognition that "people's preferences vary greatly across the range of treatment and intervention in (terminal and) non-terminal care, based on (but not limited to) such factors as likelihood of success, side effects and risks, invasiveness, impact on family and friends, psychological and financial costs incurred, time consumed (especially when compared to time available to be something other than a patient) and amount of medical resources devoted to the treatment involved.??? (From a paper by Roger Brewin presented to the 2007 Ohio River Group, entitled "Is That All There Is????) Quality of life matters, if only to the person living it. That person needs to have some say in their treatment so that it reflects his/her ideas about quality of life. The reason that I decided against the five year course of treatment recommended by two surgeons was a quality of life consideration. I tried the treatment for several months and it exhausted me. I did not want to feel exhausted for five years, despite the potential benefits of going through it. I weighed the risks; I considered the quality of my life and I declined the treatment. I have no regrets.

At age 88 my Aunt Bea was ready to die. One night she had visions of her long dead husband as a young man, coming to get her. That night she had a heart attack. She was 88, living in a nursing home, and they rushed her to one of the premier hospitals in New Jersey, put a stent in an artery for $130,000 and prolonged her life, much to her dismay. Four months later the cancer that had metastasized to most of her organs and had destroyed her ability to enjoy life many months before, finally killed her. Quality of life matters and needs to be factored into decisions about medical care. But in order to pay attention to a person's wishes about quality of life, the person has to be aware of them him/herself and make them known to others. Perhaps if my aunt had had a health care proxy and living will instructions and a Do Not Resuscitate order, we would have let her go when her heart gave out. It gets complicated when other people determine the quality of our life. Their values and priorities may not reflect ours. Either people "give medical treatment not for the benefit of the person treated but in order to assure themselves that they are doing everything that can be done. That attitude leads to circumstances in which treatment continues long past the time when it might lead to good effects or when the person would have wanted the type of care being provided.??? (Stephen Lammers in The Christian Century, September 4, 2007) The choice of doing everything possible to keep someone alive demands that we look at the resources required to do this and consider the potential injustice in the allocation of those resources. To what other uses might that $130,000 stent have been put? What did my aunt want? What did my family want?

Or we look at those we deem worse off than we are and, passing judgement on what we suppose is their quality of life, we say I would never want to live that way. But the fact is we don't know that. We do not know and cannot predict how we would respond. The National Catholic Partnership on Disability reminds us that "The presence of a disabling condition does not negate the right of persons to have the integrity of their remaining healthy functions respected . . . " The one living the life must, when possible, be the primary voice in determining the quality of that life.

Which brings up the final consideration for today, namely that it is up to us to reflect upon our lives and our values long before we are facing a serious illness and/or the end of our lives. To that end some hospitals and chaplains have prepared a values clarification tool for helping people to articulate their values. I'm passing around one from Overlake Hospital Medical Center in Bellingham, Washington which I came across in a conference I attended this fall on medical ethics. It asks us to think about the importance of relative quality of life under differing circumstances, our attitudes about our health, independence, living arrangements, finances, personal relationships, and our spiritual beliefs and attitudes about life and death. Personally, I find it useful. I hope you will too. I hope it helps you to speak about these considerations with your family and friends. Also, I am happy to speak with you privately about this at any time.

Rilke wrote

Who has twisted us around like this, so that
no matter what we do, we are in the posture
of someone going away? Just as, upon
the farthest hill, which shows him his whole valley
one last time, he turns, stops, lingers----,
so we live here, forever taking leave.

And so we do. Regardless of age, health or illness, we all are forever taking leave. To do so in a manner consistent with our best selves we might take into account at least four considerations. First our Health Care Proxy, which allows us to specify our wishes for health care should we become incapacitated. This also involves a recognition of the needs of the people we ask to carry out our wishes, as well as those of other family and friends. Second our choice of health care providers, albeit limited by what passes for a health care system in this country. What must we do to maintain our worth and dignity and have our decisions regarding treatment honored by the professionals charged with our care? Third, how do we define quality of life? What factors offer us the best quality of life and how do they influence our decisions abo ut treatment? What are those factors? Keeping our faculties? Time? Money? Independence? Family and friends? Staying alive? What? Fourth, and finally, what are our values, attitudes and beliefs about sickness and health, living and dying? How can we live and die, when we come to die, consistent with what we believe and value?

Lots to think about here. Each of us must find our own keys, must create our own way, realizing, like Mulla Nasrudin, that the answers we find will depend upon the questions we consider. Why is this important? Because in order to live deeply we must remember that we will most likely grow old, we will most likely grow sick and, at some point, we will die. We are no more and no less than a part of the circle of life and in recognition and in love of that, we owe it to ourselves and each other to give it our best, most considered, our wisest and most glorious efforts.

Dawna Markova wrote a poem called Fully Alive

I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
To allow my living to open me,
To make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance;
To live,
So that that which came to me
as seed
Goes to the next as blossom,
And that which came
to me as blossom
goes on as fruit.