embracing mortality.

2 Nov

Delivered at First Unitarian Church, Louisville, KY
November 1, 2015

Opening Words
excerpts from Mortality by William Knox

O why should the spirit of mortal be proud?
Like a fast-flitting meteor, a fast-flying cloud,
A flash of the lightning, a break of the wave,
He passes from life to his rest in the grave.

The leaves of the oak and the willow shall fade,
Be scattered around, and together be laid;
And the young and the old, and the low and the high,
Shall moulder to dust, and together shall lie.

So the multitude goes, like the flower and the weed
That wither away to let others succeed;
So the multitude comes, even those we behold,
To repeat every tale that hath often been told.

They died, ay! they died! and we things that are now,
Who walk on the turf that lies over their brow,
Who make in their dwellings a transient abode,
Meet the changes they met on their pilgrimage road.

Yea! hope and despondence, and pleasure and pain,
Are mingled together like sunshine and rain;
And the smile and the tear, and the song and the dirge,
Still follow each other, like surge upon surge.

‘Tis the wink of an eye, ‘tis the draught of a breath,
From the blossom of health to the paleness of death,
From the gilded saloon to the bier and the shroud,—
O why should the spirit of mortal be proud?

Summer has faded, now, and we can feel the coming of Winter. Nights have grown longer, the time has changed, the ground has frosted, the leaves are falling. Last night, our children played with death and fear. Pagans celebrated Samhain, the thinning of the veil between the living and the dead. Today, our Hispanic neighbors celebrate the Day of the Dead. Today and tomorrow, Christians are marking All Saints and All Souls days, both holidays commemorating the dead.

This is the time of year we pay attention to death and to dying. A time to be hyper-aware of our mortality. Death, we know, comes to us all.

“Facing Mortality” by Xobius

But it comes to us all in different times, and in different ways. For some, it will come after a long life well-lived. Others will die much too soon. Some of us will go quickly, and others will experience prolonged suffering. Some will have warning, some will have what feels like too much warning, and for others of us, no amount of warning will be enough. Some of us, indeed, are already in this place of contemplation – know that either due to age, or disease, death is knocking.

‘Tis the wink of an eye, ‘tis the draught of a breath,
From the blossom of health to the paleness of death…

In between is our lives – the story of our lives. With heroes and villains, ups and downs, plot twists, and more. Forrest Church said that the main task of religion is to figure out how to live knowing that we will die. We live our lives making meaning, finding the way to live our stories. What we sometimes forget is that how our story ends matters, too – it matters to us, and it matters to those who are left behind.

It’s difficult when the end of our lives doesn’t match up with what we hoped the end might be like. It is hard for us, and it is also hard for our loved ones. There is a higher case of depression in our loved ones if, when our times comes to die, we don’t have the death we hoped for – if our loved ones question whether they made the right decisions, the ones we would have communicated to them if we could have.

This is why it is vitally important to have these sacred, values-based conversations with our loved ones about our wishes for the end of our stories. It is vitally important for our own well being, and for well being of our loved ones. Atul Gawande writes “our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life.”

Gawande is an American surgeon, author, and public health researcher. Wikipedia says that he is a general and endocrine surgeon at Brigham and Women’s Hospital, professor in both the Department of Health Policy and Management at the Harvard School of Public Health and the Department of Surgery at Harvard Medical School. And he is a staff writer for The New Yorker. He believes “we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.” Gawande’s recent book, Being Mortal, can be a part of that refashioning process.

Being Mortal is Gawande’s fourth book. In a very readable style, he shares his experiences with approaching death not just as a surgeon, but also as a son watching his father’s health decline. He writes about how modern medicine is geared toward fixing, trying one thing after another as a patient approaches death – often subjecting them to increased pain and both physical and emotion suffering. Try this treatment, this surgery, this chemotherapy, doctors suggest – most of which will not prolong a patient’s life in the quality they expect. In the process, Gawande says, “our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”

Gawande cites study after study, and his own personal and professional experiences, which show that “people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation and to spare their family anguish.”

These conversations often start with technical details: who do you want to make decisions for you when you no longer can? What sort of medical treatments do you want, or not want? How comfortable do you want to be?

But the conversations don’t stop there. Ideally, the types of conversations we have with our loved ones will include talking about our priorities, knowing, of course, that these priorities will likely change over time as we change. Gawande talks about a patient of his, who evaluated whether or not to have surgery based on whether it would allow him to eat ice-cream and watch football. Those were his goals. If the surgery would allow him to do that, then he would go ahead with it, but if not, he was content to continue the course he was on.  Until he was unable to eat ice-cream and watch football, he said no to the surgery. When he no longer was able to do so, he agreed to the surgery since it would give him back these capabilities – otherwise, he would not have had it done.

Gawande says that

“People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.”

Part of the problem is that medical advances have outpaced our ability to adapt. When there is no way of no how much longer we have, and particularly when we imagine ourselves as having much more time than we actually do, then “our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh.” Gawande says “The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do.” There is always one more thing to try.

In the process of trying one treatment after another, we rack up massive medical bills. Millions of dollars are spent each year to prolong life without attention to quality of life. “In the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care…that is of little apparent benefit.”

Gawande writes extensively about hospice, and how it is a way to return to a model of treating the dying with dignity, rather than as a medical problem hat needs to be solved. Prior to the 1940s, most people died at home. But then there was a shift in family life structure, and in the capabilities of medicine, and so most people began dying in hospitals or hospital-like environments. This medicalization of aging put the elderly’s physical safety as more important than their emotional well being. We turned aging into a medical problem that needed to be solved. However, the trend is changing. An increasing number of people are now dying at home, under care of hospice, especially when hospice does not require them to give up other treatment options. Gawande cites an experiment from the Aetna insurance company in 2004:

Instead of reducing aggressive treatment options for their terminally ill policyholders, [Aetna] decided to try increasing hospice options. Aetna had noted that only a minority of patients ever halted efforts at curative treatment and enrolled in hospice. Even when they did, it was usually not until the very end. So the company decided to experiment: policyholders with a life expectancy of less than a year were allowed to receive hospice services without having to forgo other treatments…A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from 26 percent to 70 percent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room half as often as the control patients did. Their use of hospitals and ICUs dropped by more than two-thirds.

In addition, these patients often lived longer than expected, with a better quality of life.

When we communicate our priorities with our doctors and with our loved ones, our end days are more likely to match up with the rest of our stories. We are more likely to die in the way we want, which is good for our well being and for that of our families.

As a person with aging parents, I found the book to be very educational on how to approach my parents and in-laws as their health inevitably begins to fade. But it also made me realize that I need to have more conversations about my own wishes and priorities with my spouse. Though we have wills and advanced directives already filled out, I anticipate an enlightening conversation about priorities – about how the interventions we would want are very much based on how we would be able to interact with one another, our children, and our families.

Let’s hear from two other people who have found Being Mortal to have been formative in their own processes. First, Vida Vaughn is Assistant Director of the Kornhauser Health Science Library at the University of Louisville. Then we will hear from our own Rita, and her experience of the book.

Reflections from Vida Vaughn
In my role as a clinical librarian I work with physicians on a daily basis who are often confronted with the complexities of aging and dying patients. The majority of them are young enough to be my children. These are bright young men and women well-schooled in the science and art of medicine. The focus of their education has been on preventing, treating, and curing disease. Very little of their didactic instruction has been about having the difficult conversations associated with dying. As Dr. Gawande points out in his book Being Mortal, “The pressure remains all in one direction, toward doing more, because the only mistake clinicians seems to fear is doing too little. Most have no appreciation that equally terrible mistakes are possible in the other direction—that doing too much could be no less devastating to a person’s life.”

I have been in many meetings where doctors have wrestled about what their approach should be when counseling patients on difficult choices. Should they tell the patient what they think is best for them with expectations of compliance? The paternalistic approach. Should they be a source of facts and figures but remain detached from influencing the patient’s choices? The informative approach. Or should they act as counselors and contractors, guiding the patient with information and questions that help the patient determine what is best for them? The shared decision making approach. While medical literature generally promotes the shared-decision making approach it is not without its own challenges.

Rarely in the emotionally charged circumstances of aging or death is a doctor interacting exclusively with a patient. The physicians I work with regularly discuss the trials of addressing the desires of family members…especially when those desires contradict that of the patient’s. There are times when the doctor feels confident a plan of action only to have that plan dissolve as a result of second thoughts the patient may be having. My heart has truly gone out to these young men and women as I have listened to their well-intentioned efforts to do what is best for their patients as they navigate the minefield of sorrows, fears, lost dreams, and the non-absolute science of medicine. The only true absolute being that all of us will die at some point.

It was because of my experience with physicians that I felt compelled to share Dr Gawande’s book Being Mortal with some of the physicians I work with. I gave it to the head of the internal medicine residency program with hopes this book would become part of the curriculum. I also shared it with one of my extremely bright residency chiefs upon his graduation with the counsel that part of being a great clinician is the ability to have the hard conversations that go beyond the science of medicine.

In conclusion, I feel Dr. Gawande’s book outlines a path for clinicians, as well as each one of us, described by Dr. Feudtner in a recent article published in the Journal of the American Medical Association (JAMA). For the purpose of this meeting, I took license to expand his thoughts beyond the pediatric population he serves:

“How do we best support patients when they confront these most difficult situations? “The task is simple: be straight forward, clear, balanced, compassionate. Stay focused on helping the patient as they search for a way on their own terms. On the other hand, being fully present in the midst of such strong emotions and stress is a challenge worthy of a lifetime’s determined effort. Yet even amid the tumult of some of the worst life puts in front of us, some of the best that life offers also blooms.”

Reflections from Rita
As my parents (ages 92 and 91) started needing help, one of my 5 brothers sent a copy of Being Mortal to each of his siblings. My brother is a doctor and had met Dr. Gawande at a conference and was impressed with his insight and earnestness.

My folks have been in the same 3 story house for almost 60 years. My father plans to die there and my mother regrets that they didn’t move to a manageable space decades ago.

Dad spends his days confined to 4 rooms and has no interests outside of watching TV. He loves playing cards, but being mostly deaf and becoming more confused has robbed him of the ability to participate often in this simple pleasure. Some days are better than others.

Mother yearns for community connections and human contact. She has become Dad’s caregiver and there is little communication between them beyond his physical needs.

As the only ‘in town’ daughter I am relied upon to do a lot of the weekly support for my folks.
This assistance ranges from the simple, “Here Mom, let me take you to the grocery” to the more intricate assessment of what they really want and communicating that to my siblings without adding what I think they “need” to be safe or even comfortable. I have learned that I can do little to address their deepest fears, but can listen to them.

In my job, I resource over 200 people, many of whom are in their 70’s 80’s and 90’s. The range of physical, emotional and psychological health and mental acuity is astounding.

I know that physical comfort can top safety as a priority, that recognizing who is talking to you isn’t as important as being talked with. I’ve learned that we do not “enter a second childhood” as we age, but we may enter a different way of dealing with our world.

One of the biggest lessons I’ve learned is that there are as many people afraid of dying as people who are afraid of living too long and that we need to respect each fear.

This book has helped me understand that we (our generation and Americans) are really bad at aging, becoming aged ourselves and dealing with aged people. Part of this is because we no longer live in multi-generational homes where our elders die at home.

Americans are independent by nature, seeking our own happiness, security and paths to success. We no longer inherit the family farm and grandma with it. We move out of town and establish lives elsewhere.

Another factor is our youth/beauty obsessed culture that has negated respect for elders. This change has left a void in how we view the aging process. The fact that we view aging as an illness and that dying is done behind a hospital door, often with only medical staff in attendance, makes it hard to see nobility in the elderly.

I hope to apply these lessons to my own aging process and go out on a high note without exhausting my resources, family or friends.

Conversations with our loved ones and medical providers about our priorities as we approach death or as we age not only help us to have confidence that our wishes are understood, but they help our loved ones in their decision making – giving them confidence that they are doing what we would want.

Embracing Mortality, by Atul Gawande, raises some helpful questions about how to have these sacred conversations.

But you don’t have to read the book to get started embracing your own mortality. On Saturday, November 21, from 10am – 12pm, here at First U, we will help you take a step in that direction. On that day, we will have social workers from Hosparus here with advance directive forms, living wills, and more – not only will they be able to answer your questions, they will be able to notarize the forms to validate them. We will also have the forms required in case you want to donate your body to the University of Louisville medical school, and possibly a lawyer who can talk to you about to when to consider guardianship issues.

This is not just for the retired or elderly – parents of young children, we will be providing childcare because we know that it important that you have these conversations as well. Oftentimes, those of us younger than a certain age forget that disease or terminal illness can strike at any time. Having had these conversations in advance of such a diagnosis can give us peace of mind in case something happens to us or to a loved one.

Death comes for all of us no matter how busy we are, how important we are, how much we run away from it. It is an essential part of our stories. Recognizing and embracing our mortality means understanding this, and having conversations with our loved ones about the type of death we want, about what our hopes are as we approach death. In this way, understanding the finitude of one’s time can become a gift that we give ourselves, and our loved ones. It is, truly, a religious act in that it is a final way of making meaning. May we treat it as such. May we make room in our lives for these sacred conversations.

Closing Words
Because hope and despondence, and pleasure and pain,
Are mingled together like sunshine and rain;

Because the smile and the tear, and the song and the dirge,
Still follow each other, like surge upon surge.

Because to be human means to be mortal, and to be mortal means to die.

Because whether we speak of them or not, there are ways that each of us would choose to live our end days, and ways we would choose not to,

Because of all of this, let us speak of those priorities we have, those desires and passions beyond merely being safe and living longer, so that we might have the chance to shape our story and thus find meaning in our lives.

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