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Throughout my nursing education, I was taught that humans have a natural inclination to be in denial of their mortality. I've learned to question that psychological stance. I agree that it's common, yes. But perhaps it's learned and conditioned through the way we “hold” death culturally. There are many examples of cultures in which dying is considered as natural as birth.
When viewed as essential natural events on a soul’s journey, birth and death have much in common. there is no worldwide agreement about what our spirit experiences in birth and death. But many people see birth as the time when our spirit enters a body, and death as the time when it leaves. As we travel life’s journey, most of us do our best to enjoy the trip and choose what enlivens us and those who are important to us. Wise women and men continue that same path until their last breath.
A wise woman who was living with cancer once shared with me two quotes that inspired her: “I prefer to think of death not as an enemy, but as a friend or even a sister.” (John Shelby Spong) and “The time has come for us to embrace death not as an enemy to be defeated, but as an aspect of life’s holiness to be embraced. Death is life’s shadow. It walks with us through the entire course of our days. We embrace death as a friend because we honor life. I honor Life by living fully.” (St. Francis of Assisi) Then she said “As for me, when my time for dying comes I will remember what Peter Pan exclaimed when he finally got his shadow (mortality), “Dying shall be a GREAT ADVENTURE!”
To live well and die with peace, it's important to live in ways that are congruent with our values and our spirit. In that way, even small steps that are authentic are more valuable than steps that are not right for us. Unfortunately, part of our cultural immaturity is to follow authority figures instead of looking within ourselves and within the reflections of life around us for our guidance.
People in many of the oldest and longest thriving cultures see life-threatening challenges as community-enriching experiences because in these times individuals and families get to release their need for control, practice trusting the unknown, and offer themselves as vehicles for the good of the community .
In these cultures, the tragic lives are the ones when people die fast and do not get an opportunity to grow in soul-strength and wisdom. This is quite different from the main view in North America, where a quick death is called “merciful.”
What happens to our quality of life if we allow ourselves to be dependent on a medical system in which life is measured in days and vital signs? What happens to our spirit when dying is seen as the end of our journey, instead of the next step?
What happens to our autonomy, empowerment, and sense of our self as a meaningful member of a family and a community when we look to physicians to forecast the course of our illness, and let that forecast frame our remaining days and nights? Probably most of us have seen examples of people who let this happen. If you’ve not seen an example of a person who kept her autonomy intact throughout her terminal illness, here's a link to a short video that can inspire you: Being a Sovereign Not a Victim from The Caregiver's Compass on Youtube.
While physicians are highly trained specialists in treating health conditions with chemicals, radiation, and surgeries, most of them are not trained to assess and treat the whole person: body, mind, and soul. The very nature of their highly specialized training leaves little room for that.
In our culture’s job description for physicians, we’ve asked them to fight against illness and injuries and not quit until they’ve run out of options. Consequently, most physicians aren’t trained to work collaboratively with their patients in the sensitive process of weighing the pros and cons of treatment options. The important work of helping people who are living with life-threatening illnesses fits well with the role of nurses.
Only the best physicians empower their patients to make choices that honor their values and resources. When physicians do this, they’ve taken a personal interest in learning how to do it, and they give extra time that’s not compensated in today’s reimbursement system.
“Except for hospice physicians, most doctors are usually the last one on the care team to admit that their patient is dying.” Nurses know this, but I was surprised to hear it from a physician who had recently retired from a primary care practice and was now working in a hospital emergency room. We were discussing end-of-life care.
“First of all, doctors do not know how to admit defeat,” he said, “and then they do not know how to express the obvious in simple words. By the time they can do it, there is usually not much time left.”
When I asked this insightful and caring MD to tell me more, he described what he says to his patients when he sees there is nothing more that can be done medically. “I use different words and analogies for different situations and people,” he said. “I might start with ‘We all know we will die, but we usually do not know how or when. We are all terminal.’ Then I say ‘there is nothing more we can do to cure your illness. Let’s make a deal. Whoever gets there first needs to send the other a card and let them know if being good has been worth it. . . . What do you say about that?’ ”
That was a caring physician’s example of better communication to a patient than most physicians give. If your doctor was saying this to you, how would you feel and where would it leave you in terms of knowing what to say or do next?
If you were experiencing serious disability or illness from an accident, metastatic cancer, heart failure, kidney failure, emphysema, or another life-threatening condition, what would you want your doctors to say to you? If you haven't thought through this yet, when will you? Who in your life could you trust to listen to your thoughts and feelings and help you live and die wisely?
The issue has become pressing. For one thing, the soaring cost of caring for terminally ill people is one of the greatest threats to most developed countries' long-term economic solvency. In the United States, more than ONE BILLION dollars was spent by Medicare in 2012 for the 5% of people who were in their final year of life, and most of that money went for care in their last couple of months. Often this was care that gave them very little benefit in terms of what any of us would call “quality of life.” If you reflect for a moment on the little bit of this that you are personally aware of, what do you recall?
The enormous scope of this subject rarely reaches public awareness.
The failure of our medical system for people who are facing the end of their life runs deep. To see this, you have to get close enough to see the way decisions about medical care are actually made. Nurses usually have more insight than most people, depending on their area of practice.
To illustrate this point, here's a story told by Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital in Boston, Massachusetts.
“While seeing a patient in an intensive-care unit (ICU) at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college. ‘I am running a warehouse for the dying,’ she said bleakly. Out of the ten patients in her unit, eight were unlikely to ever leave the hospital.
One of these was a woman in her 80s with end-stage respiratory and kidney failure who had been in the ICU for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had said that she didn’t want to die that way. But her children didn’t want to let her go, and they asked the doctor to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now the woman lay there tethered to her pumps, drifting in and out of consciousness.
Then there was a 79-year-old woman who had irreversible congestive heart failure and was in the ICU for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones.
And there was a 70-year-old who had cancer that metastasized to her lungs and bone and a fungal pneumonia that arises only in the final phase of terminal illness. She had asked to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics.
Almost all these patients had known for some time that they had a terminal condition. Yet they, along with their families and doctors, were unprepared for the final stage. ‘We are having more conversation now about what these patients want for the end of their life,’ my friend said. ‘The problem is it’s way too late.’ ”
I once asked an oncologist what he hopes to accomplish for terminal cancer patients when they first come to see him. “I think, Can I get them a pretty good year or two out of this?” he said. “Those are my expectations. Sometimes I can hope for three to four years but this is not what people want to hear, they are usually thinking ten years or more.”
The public tends to think doctors are well equipped to support people who are living with a life-threatening illness, but at least two things get in the way.
First, our views are often unrealistic. A study led by Harvard researcher Nicholas Christakis asked the doctors of almost 500 terminally ill patients to estimate how long they thought their patient would survive. Sixty-three percent of the doctors overestimated length of remaining life. Only 20% estimated it correctly. The average estimate was 530% too high. And, the better the doctors knew their patients, the more likely they were to err.
Questions for Nurses:
Second, studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific forecast, even when pressed. More than 40% of oncologists report offering treatments that they believe are unlikely to work. In our current era, the relationship between patient and doctor is increasingly miscast in retail terms, e.g., “the customer is always right.” That influences doctors to be especially hesitant to step on a patient’s expectations, so they worry far more about being pessimistic than they do about being optimistic, and talking about dying seems pessimistic.
In 2008, a national study showed that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted to intensive care units had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times more likely to suffer major depression.
Spending one’s final days in an ICU because of terminal illness is a kind of failure for most people. You lie on a ventilator, all of your organs in some stage of shutting down, your mind teetering on delirium, never leaving a foreign, fluorescent place. In cases like this, often the end comes with no chance to say the most important words to you and your family: “It’s okay,” “I am sorry,” “I love you," and “Goodbye.”
When given compassionate support to fully understand their situation, most people have other concerns than simply prolonging their lives. Surveys of people who have terminal illness show that their top priorities are:
End-of-life suffering is more often linked to sadness, guilt, fear, and regret than physical pain, and trying to medicate them away is often not possible.
In many cases, our hospital care system has failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hardest question we face is not how we can afford this expense. It’s How can we create a health-care system that helps people who are nearing the end of this lifetime to achieve what’s most important to them?
If you enjoyed this post, check out our CE Course "Learn to Be a Healing Presence" or our "Become and Enlightened Caregiver" bundle.
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