Amy Berman, a registered nurse who works in New York City, is dying. She is in her early 50s, just a little bit younger than me.
We have never met. I know Berman’s story because she has written extensively about her experiences, her choices, and her thoughts on how society handles end-of-life care. The Washington Post published a column by Berman this week, in which she described her decision to seek only palliative care, rather than aggressive treatment, for the Stage IV inflammatory breast cancer that was diagnosed 18 months ago.
That column was excerpted from a longer piece Berman wrote for the journal Health Affairs, in which she also discussed her thoughts on how patients are advised of their various end-of-life medical options, including hospice care. Her Health Affairs column produced sharp, though appropriately sympathetic and respectful, reactions from several readers who worried that other women with Berman’s diagnosis will be too quick to turn away from treatment alternatives after reading her account.
Not very long ago, the topic of death – especially the prospect of one’s own death, or that of a close relative – was nearly taboo. We talked about death in euphemisms. People did not die, they “passed away.”
On a January evening some 40 years ago, my family had just sat down for supper when my grandmother, who lived nearby, called in a panic. She could not rouse my grandfather from his chair. My parents called for an ambulance and rushed out, leaving me to look after my younger brother.
I heard nothing for the next several hours. Then the phone rang, and when I answered, a woman who identified herself as a hospital nurse stiffly told me that “the patient” had “expired.” At 14, I was just barely old enough to know what she was talking about. I thanked her for the information and hung up. To this day, I have no idea why that nurse called our house when my parents were still at the hospital.
When I was helping to build a financial planning practice at a large accounting firm in the 1980s, some of the senior partners were a little queasy at the thought of having me talk about estate planning with our clients, who were mainly senior executives at major companies. Such a discussion might be the province of lawyers, but certainly not of CPAs. I ventured that most of those executives were well aware that they would someday die, and that they would appreciate professional guidance from someone who thoroughly understood their financial situations and goals. They did, but it still was not always easy to sell my bosses on the concept.
We have come a long way since then. Clients whose children are grown seldom flinch when my colleagues and I bring up estate planning topics. Couples with young children still tend to have trouble completing their wills, often because deciding who should take custody of the kids if both parents die can be a highly charged issue. But even in these situations, people gamely try to talk things out rather than avoid the subject.
I am no longer surprised when someone in Berman’s situation deals with the prospect of untimely death with remarkable calm, courage and dignity. I see it regularly. It can be hard, but my co-workers and I are professionally obliged, and personally inspired, to do everything in our power to let terminally ill clients know that their families will be looked after, and that their plans will be carried out. We can offer at least that degree of comfort.
Death is no longer a stranger who most often arrives unannounced, as it did the night my grandfather died. We know death is coming and we plan for it. I suppose that makes it less frightening when it finally happens.
40 years ago, we did not have advance health care directives and living wills to document our treatment preferences, or health care proxies that authorised family members to make medical decisions for us in a crisis. There were not that many decisions to make. Stricken people did not tend to linger very long. Today, however, even young adults are apt to contemplate the sort of end-of-life care they want.
A lot of us might envy my grandfather’s death, in which he dozed off in his easy chair and never woke up. There is a lot to envy, except that he was still in his 70s the night his first and last heart attack ended his life. Today’s paramedics might have been able to revive him on the way to the hospital, and he might have had a decade or more of additional time. Everything comes with trade-offs.
For many people my age, one of those trade-offs is that we must watch our parents go through extended periods of decline and dying. We get more good time with our loved ones, but we get more not-so-good time, too. We are the sandwich generation, helping our kids transition to adulthood while we help our parents through their last years. These experiences are making us more realistic about death, and more comfortable dealing with it, planning for it, and talking about it.
That’s good. Since death is inevitable, it ought not to bring surprises, certainly not the kind of surprise that happened to a neighbour when I was growing up. She and her husband had a comfortable lifestyle. He handled the money; her only decision was how to spend it. Then he died – still quite young – and she learned that most of their income came from a pension that ended at his death. (Laws have since been changed to require both spouses to consent to such single-life pensions, which have become quite rare.) She spent the rest of her life pinching pennies.
As a nurse and a patient, Amy Berman views her terminal illness from a medical perspective. As an estate and financial planner, I see it from a business perspective. Many other people, from home health aides to pharmacists to bankers, also deal professionally with the prospect of death and its aftermath. For those who work in hospice, it is the entirety of their profession.
In the end, we all deal with death as human beings who want to make the most of our limited time with one another. Those who bravely share their thoughts and experiences, like Berman, make it easier for the rest of us.
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