Sermon: Dying Well

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Dying Well

By Charles Rush
with reflections by John Vigilante

March 20, 2011

[ Audio (mp3, 8.8Mb) ]

e New Yorker this week had a piece about the spate of advertizing that is pitched at the mature age group which lift up jaunty, independent, somewhat randy images as though to suggest we can roll back time or at least retard it more than we can. Against the marketing imagery, there have recently appeared a number of books on the state of dying right now. They tell quite a different story. But then they begin from the premise “that despite what the marketers of longevity will tell you, no one ever survives it.”[i]

The news for aging in America is quite good, as you might imagine. The New York Times published the statistic this week that if you are born in 2009, your life expectancy is 78 years and 2 months. Wow!

Just to give you some perspective. In 1790, the first year the United States had a census, less than 2% of the population was over the age of 65.

By 1970 10% of the population was over 65.

Right now, with the first of the Baby boomers retiring, 13% are over 65.

The projection at the moment is that by 2030, we could have 30% over 65.[ii]

We are living longer and longer, and also better I would suspect.

Today's challenges are a by-product of our pronounced success. Our life span is not only inching towards the built in expiration date for our bodies, we have made technological leaps in terms of diagnostics, as well as a whole genre of micro-techniques that have cumulatively advanced our sense of control overall.

What that means is that more and more of us will have an increasing number of decisions to make in the last chapter of our lives. At the moment, they are probably more complicated than in the past as we are at an in-between time.

Jewish Rabbi's make a helpful distinction from an earlier, simpler time. In Judaism we are taught that our obligation is to preserve and sanctify our life because human life, in all of its forms is a sacred gift and trust. We are obligated to not only help our neighbors to live but to fill all of life with holiness. We Christians say something quite similar, we are to fill our lives and those around us with ‘compassionate love', with ‘humane love', that is what makes it sacred and holy. We dignify life when we keep on that path.

So we are obligated to provide others food, water, and medicine. Certainly, we try to do no harm, one of the principle moral maxims of the Hippocratic Oath. We extend compassion, giving others, literally in Hebrew, the ‘Breath of Life', the Spirit.

But, and this is the operative distinction, there comes a time when we can say, ‘the dying process has begun'. They call it ‘goses'. Now in ye olden days, when we had far fewer diagnostic tools and even fewer remedies, we had simple external symptoms. People would stop eating, they would sleep, their breathing would become labored, they might be delirious, they might lose consciousness. But, once the ‘process of dying' has begun, we are no longer obligated to save life, instead we facilitate the natural dying process, dignifying it with compassionate care.

The good news is that we have begun to embrace hospice today in a much more serious way. Indeed, simply in the past year when I've watched the hospice folks get involved at our teaching hospitals in New York, the people that are involved in it have a new level of expertise on the dynamics that are involved with the body at the very end of life. There is a comprehensive quality to their management approach that is much more sophisticated.

Likewise, we happen to have something of a model program of hospice here at Overlook. We are getting far better at pain management, at not interfering with the process of the body shutting down, and at seeing the patient as a whole person to be attended to.

The reason that we have complicated decisions to make today are the direct result of our technological prowess. Our diagnostic ability is able to see things so much earlier and, in combination with our breadth of case study, means that the time line on terminal illnesses is extending and we have a better idea of how it is likely to go, with all of your particular variables. The complicated part is compounded by the fact that the state of medical research on your particular illness is likely to be in the midst of a number of significant trial studies, so that future treatment and prognosis is routinely evolving. And you can read about most of this on the internet. So, today, I would presume that most families have at least one person that decides to harness their nervous energy in the face of this terminal threat by “immersing themselves in the literature.”

When I was younger, my wife used to plead, ‘why aren't you writing your dissertation?' And I used to respond, ‘I'm immersing myself in the literature.' I've done a lot of immersing and I can attest that it is a very effective way to burn up nervous energy.

I genuinely feel for the plight of our physicians today with all of these internet medical experts, full of earnest concern, and good questions, but regularly with just enough knowledge to be dangerous and not really realize it either.

You have to make important decisions in a context where there are a lot of moving variables. I know someone with a heart condition that is largely genetic, they inherited it. But the cardiologist told them that is unlikely to become an issue for another 15 years and that by that time, they expect a procedure to be developed that will be largely non-invasive. If you can hold out for a few more years, it is likely that critical new developments will take place that could be a game changer. The progress in research encourages a certain overall optimism, even in your particular struggle.

At the same time, enough of our terminal illness and the treatments for these illnesses, are complicated enough that we really can't describe for your family in advance how these things are going to go, at least not for you particularly. We don't really describe for people all of the potential complications with enough detail at the moment, speaking strictly anecdotally from my experience dealing with families in these situations.

At the moment, too often, the complications themselves develop a whole other set of issues to be managed, or the complications themselves reduce your quality of life enough that, had you known you would be in this situation with these new limitations on your life, you wouldn't have taken that path, because ironically it put you almost exactly where you didn't want to be when you thought of the worst case scenario at the beginning.

You want to treat the illness and live but you don't want to simply exist with a quality of life that is below minimum grade. So at the moment, we regularly find ourselves underutilizing the considerable possibilities offered by hospice because we bring them in pretty late. This is moving all of the time but that is my sense at the moment.

I'm of a mixed mind at this point, which is probably spot on. On the one hand, our built in will to live is so strong and every year our quality of longevity extends, so that I completely understand people that want to live and live until they absolutely can't, and then have to resign themselves to the inevitable. I had someone that said to me, “I should have come to see you a while ago”, after they realized that they only had a very short time left to live. I thought to myself, “I don't know about that.” I'm not sure that all of us are really cut out for a lot of reflection on that last chapter.

On the other hand, if you've watched a loved one die, and more and more of us will go through this in the near future, you know that it is oddly a privilege to be present during this spiritual transition. It is oddly like birth where profound sadness sings the refrain that profound joy sings during birth. Welcoming is such a grace filled surprise and taking our final leave is just sad.

Even with all of the sadness, it is just one of those things that you are grateful to be able to share with people that you love, so to the degree that we can share with each other during the process of dying, to the extent that we can be a compassionate presence, there is something about that experience that remains deeply humane and part of what makes us grateful for our wonderful world.

I suppose the one thing that I've observed over many years in many different situations is the surprising personal direction that we have at the very end of our lives. Even though we are physically weak, indeed exhausted sometimes, you see enough times where Mom understands that her son is coming home from Alaska on Tuesday, and through a terrific exercise of sheer will, she sees that boy one more time. After that, sometimes that very night or the next day, she dies. It is powerful to see.

Likewise, sometimes the kids will gather and tell their Mom that they are going to be alright and that her grandchildren will be alright after she's gone. They give her permission, in effect, to stop worrying about their future. And shortly after that, she takes her leave.

What you hope is to be able to attend to some of those emotional and spiritual dimensions of life and not simply be a patient with a lot of complicated machines giving us complicated measurements that no longer mean much. We want to be able to attend to each other and to simply be present with our loved one who is dying in the way that we live.

And I suppose what you hope for is that their family and friends will be integrated enough that they will be able to think about what it is that Mom would want in this situation, not what we would want, but what she would want, and to try to make that possible for her to the degree that we can. It is the fundamental meaning of respect.

And I suppose what we hope for you is that as you go through this with your parents and your relatives that you will get a better idea of what you think is important, what you value. And we hope that you communicate that to your children and your friends at some appropriate time, in some appropriate venue, so that they will know enough that they can respect you one day, by attending to you in communal support, that they might be able to make mature decisions on your behalf when you can't do it anymore.

What we hope is that your family can develop some spiritual wholeness and that they can see what is precious and important in every phase of your life together.

Obviously death doesn't always happen like this. Indeed, I don't think you could have heard a sermon on this subject in quite this way even a few decades ago because this it wasn't really relevant until we crossed over a certain threshold of treatment prowess. But, going forward, something like this will be possible for more and more of us and if you can create a context in your family and with your friends where you can talk about death, talk about values, you will be so much more rounded and better off for it.

I could say much more, today I won't. I've asked John Vigilante to come and speak briefly about his friend Alex Tyree, who died last year. More than most of us, Alex was able to address the fact that he would die and he had a wisdom about it that is worth sharing. John...

Reflections by John Vigilante

is is a eulogy I delivered about a year ago for my friend Alex Tyree. The point of the eulogy was not to praise Alex but to get his message out. He was very passionate about getting this message out; a message uniquely informed by his life.

I met Alex on the first day of school in the 4th grade. Alex and I quickly became best of friends, we had a lot in common being from good families and enjoying the outdoors. We were normal kids in suburban NJ in the early 70's.

For today's purposes I will tell Alex's story in the context of the three most important junctures that shaped his life:

Juncture #1: In high school Alex was diagnosed with Hodgkin's disease. This is a potentially fatal form of blood cancer but he was “lucky” in that because he was young and fit and the medical technology had advanced he survived both the cancer and the treatments. He missed some school getting treated in NYC but he graduated high school on time so on the surface had a seemingly normal high school experience but at a deeper level he had been profoundly affected by having faced his mortality at 17. This led him down a very spiritual path for the rest of his life and led directly to his career in hospice.

For the next 10 years Alex drifted a bit but remained active in church where he was a Deacon. He was contemplating becoming a monk but then the next and most important juncture occurred.

Juncture #2 – came on July 15 1989. I know that date because it is anniversary of Penny's and my wedding; it is also the anniversary of the day Alex met Cheri. Alex was my best man and Cheri (Penny's sister) was her maid of honor. They had not met before our wedding yet 14 months later Alex was married, now had two kids, was back in school and started titling toward a career in hospice; all these wonderful change precipitated meeting and marrying Cheri.

Let me comment on Alex's hospice career. He spent 18 years working in hospice. This was a rare & wonderful case of someone finding their calling and career, avocation and vocation, all in one. Moreover through his hospice experiences he came to acquire a deep and very holistic view of life and end of life, a view that was unfortunately tested far too soon.

Juncture #3 - Thanksgiving of 2008. Alex was diagnosed with gastric cancer. This time he is not “lucky” as gastric cancer is one of the least treatable forms of cancer so Alex had a choice to make.

Alex chose life. They traveled extensively, he wrote a book and most importantly he channeled his creativity into the blogging site CarePages and formed a community of giving and thankfulness and love and hope and it was a means for him to get his message out. Alex called this community “the Big Love”.

Through this living and community he drew enormous strength and comfort. I was lucky enough to visit Alex twice in the closing days; his complete grace and peace was truly inspirational and a blessing to all of us.

I close with words from Alex, this is a net of his message. A perspective informed by two bouts with cancer and 18 years of hospice work:

“I have learned from a lot of people about what I don't want to do and that is going the total medical route and having to focus on treatment and survival to the distraction of the cultivation of the adventure side of life with its powerful emotions, travel, relationships and spiritual seeking…you can miss out on all of that due to fear. My belief is that the innate emotional, spiritual and physical wisdom that we all carry within equips us for the unknown aspect of this last chapter. As I put in my last blog, no one can grieve in your place nor die for you. So dying is a part of the practice of living. You just can't hop on at the last minute…it takes a lot of practice.”

I deeply miss him. He was my best friend for 40 years and brother in law for 20 years.

I love Alex. We all love Alex. This is Alex's Big Love.

[i] The phrase is the summary of Jill Lepore. She does a short review of a few books that I have not yet read. See “Twilight” The New Yorker, March 14, 2011, pp. 30-31.

[ii] Ibid., p. 32.