“It’s essential for us to appoint someone to represent us.”
It’s common to evaluate our net worth in financial planning, but do we also inventory what’s worth the most to us in our life? Does our investment of time match what we feel we care about the most? We’re often so busy checking off items on our To Do List, calculating what’s for dinner, and satisfying immediate needs that we postpone planning our future.
If we want to accomplish the minimum in planning, it’s essential for us to appoint someone to represent us when we can no longer speak for ourselves (health care agent), as it is to make our end of life wishes clear, recording them to provide guidance for our agent.
Although we might know there are decisions to be put in place about how we want to live up until the last minute, contemplating the end of life is ultra-challenging. It’s easy to resonate with the words of William Saroyan who said, “Everybody has got to die, but I always believed an exception would be made in my case.” Or with Woody Allen who said, “I’m not afraid of dying—I just don’t want to be there when it happens.”
“Thinking about our mortality is not something that is familiar to us, nor practiced in our culture.”
When the neurologist and author Oliver Sacks was confronted with a terminal diagnosis, he remarked, “I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written.” Making peace with his fate, he said, “I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest.”
It is only useful to consider our own time of rest when we still have our wits about us. Later can be too late. According to Dr. Ira Byock, “Americans have long been chided as the only people on earth who believe death is optional.” Thinking about our mortality is not something that is familiar to us, nor practiced in our culture.
“Quality of a person’s life is not better, but worse when more costly aggressive care occurs.”
Yet contemplating and discussing our values, inclinations, and what matters most to us at our end of life will serve us, both as individuals and as a society. Dr. Byock says that too often our fear of dying leads to our not taking charge and dying badly. He asks, “What could be worse than dying?” And he answers, “Dying suffering. Dying connected to machines.” He says, “denial of death at some point becomes a delusion, and we start acting in ways that make no sense whatsoever. And I think that’s collectively what we’re doing.”
It is informative to know what physicians choose regarding their own end of life care. Dr. Ken Murray says, “Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone… They want to be sure, when their time comes, that no heroic measures will happen–that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right). The above scenario is a common one.”
Dr. Murray continues, “Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles… walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.”
“One third of expenditures in the last year [of life] are spent in the last 30 days of life, mostly on life-sustaining care.”
The personal costs of our unrealistic expectations are mirrored by the social costs. In a NIH study a decade ago, U.S. health care expenditures exceeded $2 trillion, with 5% of Medicare beneficiaries who die each year accounting for 30% of all costs1. One third of those expenditures in the last year are spent in the last 30 days of life, mostly on life-sustaining care (e.g. ventilator use and resuscitation), with acute care accounting for 78% of costs incurred during the final year of life. There are two significant things about this study. First is that the quality of a person’s life is not better, but worse when more costly aggressive care occurs. And secondly, that costs of care were nearly 36% lower for those who had end of life discussions compared to those who did not.
Health Care Costs in the Last Week of Life: Associations with End of Life Conversations, 2009, B.Zhang et al.
Of course we all want to live. But when it’s our time to rest, what are the goals that guide how we want to live? How can we encourage inner dialogues and conversations about this? Thought leader Dr. BJ Miller suggests that death is not a medical event, it is a universal life experience 2. Losses are inevitable, but we can dodge the regret about unnecessary suffering by thinking ahead. He says that if we pay attention, our end can honor the life we’ve lived.
Wishlife was created to guide us into the territory of self-reflective dialogue, helping us overcome the hurdles that otherwise shift our focus away from what is more fun, more pleasant, and easier to do. How can we anticipate the inevitable end of our life with conscious choices, gratitude, and a sense of purpose? Let’s see if we can help you do that.
2. What Really Matters at the End of Life, 2015, BJ Miller, TED Talks ↩
