After the service a number of people came up to me with stories of their own , opinions they wanted to share. One thing I may not have emphasized enough was that the true heart of my message is choice. If you want everything done--placed on a ventilator, all the drugs available--at end-of-life, that is your choice. If you want to die at home without all of that--that is your choice. If a nursing home or hospital or hospice is the appropriate for you or your family, that too is a choice. Most of all, I want people to think about what they want and make conscious decisions and not have their loved ones struggling when you are no longer able to voice your opinions. If you have questions about Advance Directives or end-of-life concerns, please do get in touch. Thanks and blessings. -N
Jerry Seinfeld once noted that, “according to most studies, people's number one fear is public speaking. Number two is death. Death is number two. Does that sound right? This means to the average person, if you go to a funeral, you're better off in the casket than doing the eulogy.”
I've gotten over whatever fear of public speaking I used to have and, having read a number of eulogies at this point, I feel pretty clear about preferring to think outside the box, so to speak. As a hospital chaplain however, I spend a lot of time with death or, to be more accurate, with people at the end of life.
End-of-life issues are not all that popular—not easy cocktail party or family dinner conversation, well not unless you hang out with chaplains, ICU nurses, or hospice workers. People tend to be naturally uncomfortable with death. I doubt it's ever been much different. Since the first proto-humans buried their dead with jewelry and tools--a tradition that goes back to at least 60,000 BCE, we have sought to calm our fears about death. Whether you believe in a traditional afterlife, reincarnation, or simple extinction, the fact still remains, the person that you are, that I am, will cease to be in a way that is immediately meaningful for those who survive. The topic of death can be difficult and frightening, and yet, as we know, it is the destination to which we are all walking.
I think there remains within us a sort of superstitious attitude—if I talk about death I somehow invite it in. I grew up with a deeply superstitious mother so, despite my agnostic stance on most everything and a firm commitment to rational discourse, I can appreciate the primordial fear that by naming something we somehow also invoke it. Not unlike speaking of “he who must not be named” in the Harry Potter series, but just as Harry learned, to understand something, to name something, is to reduce its power to induce fear in us.
Shakespeare famously wrote “All the world's a stage, And all the men and women merely players: They have their exits and their entrances” This morning I want us to give some thought and perhaps even some planning to our parting number.
Before I started at Memorial Hospital one of my chaplain internships was at a local hospice. I was glad for the experience, but I thought I was leaving the constant association with death mostly behind when I went to work at the hospital—not so much. Just out of curiosity I kept track for several weeks in December, I was involved with 15 deaths in as many days at work. Now, I feel quite certain this isn't a reflection of the quality of care at Memorial, but rather a fact that I spend most of my day in the Intensive Care Unit and with the patients and families in the worst situations. Sometimes I feel like a mid-wife for the other end of the journey.
We've become so distant from death in this country. A short 100 years ago, the average life expectancy in Colorado was roughly 40 years old—by the time you were 15 you had been to any number of funerals. You had probably stayed up all night with the body in the parlor as was the custom. Not so long ago, we mostly died at home, cared for by our families. Funerals were family experiences and indeed you didn't attend a funeral without an invitation. The process of death was familiar—we were more likely to live near, if not with, aging relatives. We would see them, as their time grew near, turn away from the trappings of this existence. When people get close to death their appetites diminish, they may drift in and out of awareness, but often still have enough clarity to have a chance to say what needs to be said. Children saw death, learned the natural way a body shuts down, and accepted that it was part of life, inevitable.
Today the situation is quite different. Death has become a stranger and a process handled by people we hire. Death, like war and other dramatic events, is something we mostly experience through television and movies. Somewhere around 80% of Americans say we want to die at home, but most of us, almost 80% in fact, die in hospitals or nursing homes. Families are often ill-prepared for the reality. I think most people aren't aware of how far medical technology has come in terms of keeping bodies alive. These technologies are in many cases less than 30 years old. Our grandparents never had to decide if our great-grandparents wanted to be on a ventilator for a month or if they wanted a feeding tube placed in their abdomen. Hospice has been an option in this country only since 1974. The questions we face today as individuals and as a society have changed dramatically.
I'm not going to talk much about the details of Advance Directives, the legal documents that allow us to specify what we want in terms of treatment at end-of-life and who will make decisions for us if we are not able. I'm happy to answer questions during coffee hour if folks want specifics or if there is interest we can set up a workshop for a later date. There is also much more to be said about the actual process of dying, but that too can be discussed in detail elsewhere. There will be a links at my blog to websites that more information including free downloadable forms—you don't need an attorney to draw these documents up for you.
A study done in 2005 showed that roughly 25% of Americans have a Living Will, but of those, less than 16% are actually in the medical chart when the time comes. That means that around 4% of patients have the document where it needs to be.i More problematically a survey of physicians showed that 65% of them would ignore a Living Will if the decisions in it conflicted with the doctor's own beliefs. While Living Wills are important documents they are in some ways quite limited documents. A person intimately familiar with your wishes and empowered by Medical Power of Attorney is far more effective in ensuring that your choices and values are upheld rather than a physician who has never met you before or a random relative.
Yes, random relative—that is not simply artful language. It might surprise you to know that Colorado law doesn't specify a particular order of precedence in terms of who makes medical decisions when there is family conflict—indeed it isn't even limited to family members. So if your estranged sister from Kalamazoo shows up at the eleventh hour to dispute your spouse's choice, your family could well wind up in court. Some states have gone as far as creating “black sheep” clauses where you can specify an individual you specifically don't want having a say in the process. But to have the documents in place is only one step in the process—you also have to know what it is you actually want.
Most people don't want to live hooked up to machines for any significant duration, unable to interact with family and friends--and yet it happens more and more. In fact roughly one in five Americans die in an ICU and of them somewhere between 70-90% people who die in modern ICU die because the decision is made to withdraw care or limit care. That an amazing number to me, and one that I think will continue to rise---up to 90% of people who die in an ICU die because someone makes the decision to let them die. So what is the obstacle between the death we want and the one we so often get—lack of communication with our loved ones is usually the detour that sets us on a path most of us don't want.
No conversation of end-of-life choices can be complete without mentioning hospice. Hospice is not necessarily a place, though it often is, it is more a system and philosophy of end-of-life care. I think hospice is fantastic and I've had several relatives die in hospice care and I fully intend to be there myself someday. One aspect of hospice that I love is the tendency to care for the family as the patient, not just the person in the bed. Unfortunately, most families don't access hospice care until fairly late in the process. Physicians are often reluctant to suggest hospice—they all too often see it as a failure or fear their patients will feel abandoned. Some people see hospice as giving up. Some fear losing the time that might be gained by aggressive treatments, but a study just done in March of last year found that patients in hospice lived an average of 29 days longer than their hospitalized peersii—and I can pretty much guarantee that they had better pain and symptom management and that their families had better bereavement support after the death.
The discussion isn't just about the comfort and dignity with which we die, it's also becomes a dollars and cents issue and aggressive treatment in an ICU is very expensive. Now I'm Generation X, but a bunch of you out there are Baby Boomers—let me see a show of hands. Well, y'all are getting old at an astonishing rate and the number of American over 85 will quadruple between now and 2050. Currently roughly 22% of our lifetime medical costs happen in the last year of life—and that is likely to increase. With fewer and fewer of us dying of what used to kill us, more and more of us die of old age, and increasingly after a period of chronic illness and decline.
One of the reasons for the increase in costs is the increase in technology available to prolong life, or as is often unfortunately more accurate, prolong death. Now I can imagine some looking up here and thinking, “easy for you to say, you're pretty young, in good health, handsome.” And you'd be right, but it's not just about you. When this happens to you, me, anybody—it isn't usually the individual that bears the burden. It's usually a spouse or adult child who has to navigate these difficult waters. I am not, of course, saying that we shouldn't use the wonderful interventions modern medicine can offer, but we need to learn how to really press our healthcare providers about the likelihood that treatment will provide the quality of life we want. Prolonging life should always be our hope, but we should also be aware when we cannot prolong life, we should be careful not to prolong death.
These discussions are hard, but the circumstances that bring them on are not any easier. I've spoken about various gifts that I've learned I can offer to my patients and the people in my life. I hope they are gifts we can all learn to share with each other in this community—of being present to each other, of not being afraid to ask the questions that frighten us, and of acceptance even in the absence of understanding. Another gift we can offer our friends and families is the gift of helping them understand what we value about life and what are the terms on which we wish to stay or to go.
These conversations need to happen in our families, our congregation, our cities and our country. Some places are getting a start. Oregon has the only physician-assisted suicide law in the country. Right or wrong, the political battles and legal challenges about the law led to an unprecedented amount of discussion about end-of-life decisions in Oregon. It was a topic of conversation everywhere and aside from the law being in place, more Oregonians are dying on their own terms—at home, often with hospice care, with friends and family, comfortable.
The proper care of those who are dying is a topic that is well placed within our spiritual communities and also is, in many ways, a social justice issue. If you have any doubts about this then think back to the debacle surrounding Terry Schiavo’s death and the unwarranted intrusion of the state and federal governments into that process—a story that wouldn’t have been a story I might add had Terry had a Living Will and Medical Power of Attorney. Many of us here are advocates for reproductive freedom and choice. We embrace the belief that among the highest of goods is the right of the individual to self-determination. And yet to the matter of how we die, many of us give little thought and sometimes even less voice.
But I can't simply stand here and speak to you about death. To speak only of death is to speak to only one side of the coin. We must talk about life whenever we we talk about death because there is, of course, no separation. How we live is, quite often in my experience, indicative of how we die.
Rarely do Unitarians quote the New Testament, but I am thinking right now of John chapter 10 verse 10—when Jesus says “The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly.” If I were only to speak on death, I would be the thief; instead I want to preach to you the Gospel. Now, don't get nervous. This isn't the gospel being preached across the city this morning. This is the good news of our Unitarian Universalist faith. The gospel as written by Jefferson, Emerson, Thoreau, and the other prophets we call our own. The gospel I'm speaking of is what we find together every Sunday, the truth we create together, the freely chosen path that is so central to our enterprise here. We are a very here and now kind of faith. We believe in the value of this world, the protection of its people and the planet itself. We are not a faith much focused on the world to come, we don't look to paradise that we may be rewarded with later, we choose to build the world we want, again here and now. One way we do that is by affirming our first principle—in which we celebrate and vow to protect the inherent worth and dignity of all people. I want however to start with ourselves. I want us to do what is often far more difficult that caring for the other, I want us to care for ourselves. Affirm our own worth and dignity and one way we do this is to live as we choose, follow the spiritual path we chose, love whom we choose, and, hopefully ultimately, die as we choose.
I want you all to write a living will, not only the legal document put down on paper, but I want you to write a living will in your hearts. I want you to have a LIVING WILL, an affirmation of the values, a set of choices so that to paraphrase our beloved Thoreau, “when it comes to die” you find that you have truly lived as you wish to have.
One of the great lessons of Zen, and Buddhism in general, is in encouraging us to find a sense of urgency, an awareness of the fleeting time that is ours. The last words of the Buddha were “This I tell you: decay is inherent in all conditioned things. Work out your own salvation, with diligence.” Many of us have had brushes with disaster and, for better or worse, the air is changed, the sunrise more brilliant, the world sharpens and comes into a different focus. Buddhism and especially Zen with its practice of constant mindfulness strives to move us into that place more fully every day.
It is one of the blessings of my work: every day I walk with people experiencing tragedy and loss and it frequently makes me aware of the fragility of the world I've constructed and profoundly grateful even in that terrifying fragility. I would like to share with you this sensation, this poignancy, this bittersweetness—share it with you in sufficient quantity that you talk with your spouses, children, friends, and even your ministers. You may think that everyone already knows what you want, and you may be right, but I want you to consider the gift you give to those who in the future may need to make a terrible choice. These decisions are rarely clear—there is often some chance of recovery, some glimmer of hope and physicians are not inclined in my experience to present families with black and whites. Think forward to this time and to your loved ones gathered round a table. Think of the peace they might be able to have as they remember a series of conversations in which you said what you want. More than any document, those conversations are what help ease the mind and hearts of those you love. And I can assure you that these choices are only going to become more complicated as technology advances.
Please be clear that I am not speaking of euthanasia, indeed I feel I am speaking, in some sense, to its opposite. What I am advocating is a fully conscious engagement of the issue so that you and your loved ones can make choices that are in concert with your highest values.
I want you to think about your death, certainly to prepare for it in a way that eases both your and your loved one's pain, but more importantly, we should consider death for the reason people have contemplated death as a spiritual practice throughout history. People think about death to help them define their lives and the time they have. People ask me if it is hard to be around tragedy and death so much. It can be draining and sad, but as I said, it also makes me aware of what a blessing life is, what a blessing love is, and quite often, what a blessing death is.
Now is the time to choose not only your life, but also your death, to write your own eulogy—not the few words spoken to your coffin but the eulogy that will be written and spoken in the hearts and minds of those you love. I appreciate comedian Steven Wright's optimism when he quips, “I'm going to live forever, so far so good” but even so the mortality rate for Americans remains very high at 100%. Time always adds speed to life—there is, for better or worse, no standing still. Let us prepare for what will come to us all with, as the Buddha said, diligence. Amen and Blessed be.
a variety of literature, poetry, and reflections on death and dying.
a variety of literature, poetry, and reflections on death and dying.
Information on do-it-yourself funerals
Free, downloadable, easy to follow forms for Living Wills and Medical Powers of Attorney, also good information on end-of-life
varied information on hospice and palliative care
When Death Comes by Mary OliverWhen death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measle-pox
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it's over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.
To One Shortly to Die by Walt WhitmanFROM all the rest I single out you, having a message for you,
You are to die - let others tell you what they please, I cannot
I am exact and merciless, but I love you - there is no escape for
Softly I lay my right hand upon you, you just feel it,
I do not argue, I bend my head close and half envelop it,
I sit quietly by, I remain faithful,
I am more than nurse, more than parent or neighbor,
I absolve you from all except yourself spiritual bodily, that is
eternal, you yourself will surely escape,
The corpse you will leave will be but excrementitious.
The sun bursts through in unlooked-for directions,
Strong thoughts fill you and confidence, you smile,
You forget you are sick, as I forget you are sick,
You do not see the medicines, you do not mind the weeping friends,
I am with you,
I exclude others from you, there is nothing to be commiserated,
I do not commiserate, I congratulate you.
iWilliam Colby Unplugged: Reclaiming our right to die in America
iiNational Hopsice and Palliative Care Organization study: Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window