In 2007, I wrote an article titled “Whatever Happened to Common Sense at the End of Life?” for Voices magazine. I wrote about real life situations that people and their families faced along with the principles involved. I am reprising that article here in response to the many questions I receive about dealing with such difficult situations.
Unfortunately since I wrote this article, the situations people and their families face have become worse: More states have legalized assisted suicide and have expanded the definition of “terminal”, more parents of babies with disabilities are fighting for their right to treatment , voluntary stopping of eating and drinking (VSED) is promoted as a legal way to kill oneself, etc.
I have and will continue to write on these newer issues but the basic principles are still valid.
Whatever Happened to Common Sense at the End of Life?
Withdrawal of treatment, “living wills”, terminal sedation, assisted suicide, organ donation, etc. Currently, it’s virtually impossible to escape all the death talk in the media and elsewhere. For example, if you are admitted to a hospital for almost any reason, you or your relatives will be asked if you have or would like information about documents formalizing your “end-of-life” choices.
But despite all the hype, not every situation involving end-of- life issues has to involve wrestling with big ethical dilemmas. Many times, there are relatively simple considerations or strategies that actually used to be commonly employed until the introduction of the so-called “right to die”. Accurate information, common sense and a good understanding of ethical principles can cut through the “right-to-die” fog and make a person’s last stage of life as good as possible both for the person and his or her family.
Here are just four examples:
Prolonging Death or Providing Comfort?
I once cared for Mary (all names have been changed), an older woman who was near death with cancer. Her loving family took her to the doctor when she became confused and severely short of breath. An x-ray showed a fluid buildup near her lungs. The doctor inserted a long needle, aspirated the fluid and Mary immediately improved. However, the family was still worried. They asked me what they should do if the fluid built up again because they were afraid that this would prolong her death. I told them that the primary question now was comfort. If, for example, fluid did slowly build up again but Mary was comfortable, it could be burdensome to aspirate the fluid. However, if Mary did develop severe breathing problems that could not be controlled by medication, they might want to consider another aspiration since the goal was to make Mary as comfortable as possible during the short time she had left.
“Why, that’s just common sense!” the daughter exclaimed. Exactly!
Mary soon peacefully died at home with her family, never needing another medical intervention.
Families often suffer undue fear about prolonging death when a family member is dying and this can spoil what can be one of the most meaningful times in life.
After almost 40 years as a nurse, I have found that barring murder or other such situations, people generally die when they are ready to die even regardless of medical interventions. When death is imminent, the big priority should be comfort rather than whether a person might live a few hours or days longer.
What if an Elderly Person Doesn’t Want Treatment?
One of my friends was very worried about his elderly grandmother whose health seemed to be declining. She ate very little and said she was ready to die. Efforts to improve grandma’s nutrition didn’t work and she refused a feeding tube. My friend was finally able to persuade her to at least try a small feeding tube inserted through her nose.
Within a short time, there was a dramatic improvement in grandma’s mood and physical functioning. According to my friend, she was back to where she was 10 years before and the feeding tube was removed. (She lived comfortably several more years.)
Too often, doctors and even families assume that an elderly person who doesn’t feel well is just dying of old age without exploring possibilities such as depression, poor nutrition, loneliness, treatable physical problems, etc. Sometimes the answer may be as simple as antidepressants or better nutrition. At the very least, it is worthwhile to explore the options. If an elderly person is truly dying, he or she will die but the family will have the comfort of knowing that they did what they could do.
For example, in a similar situation, another friend was caring for her frail, elderly mother with chronic lung and heart problems. Ann’s mom agreed to try a feeding tube but after a short initial improvement, her mom started going downhill again. Fluid began to build up and the feedings were stopped. Ann’s mom was given what little food and fluid she wanted and she eventually died of natural causes.
Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome or reasonable options are presented as just a yes or no choice. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.
There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward.
Shouldn’t We Be Allowed to Die?
Years ago, I received a phone call from a distraught fellow nurse living in California. Her sister, Rose, was comatose from complications of diabetes and had been in an intensive care unit for three days. Now the doctors were telling the family that Rose’s organs were failing and that she had no chance to survive. The doctors recommended that the ventilator and other treatments be stopped so that she could be “allowed to die”. My nurse friend was uncomfortable with this even though the rest of the family was ready to go along with the doctors.
As I told her, back when I was a new nurse in the late 1960s, we would sometimes see patients in the intensive care unit who seemed hopeless and we would speak to families about Do Not Resuscitate (DNR) orders. However, the one thing we didn’t do was to quickly recommend withdrawal of treatment. We gave people the gift of time and only recommended withdrawing treatment that clearly was not helping the person. Some patients did indeed eventually die but we were surprised and humbled when an unexpected number of these “hopeless” patients went on to recover, sometimes completely.
About six weeks after the initial phone call, my friend called back to tell me that the family decided not to withdraw treatment as the doctors recommended and that her sister not only defied the doctors’ prediction of certain death but was now back at work. I asked her what the doctors had to say about all this and she said the doctors termed Rose’s case “a miracle”.
“In other words” she noted wryly, “these docs unfortunately didn’t learn a thing.”
Cases like this are usually not miracles. Virtually every doctor and nurse has seen at least one surprising recovery and almost every day brings a new media report about yet another unexpected recovery. However when such considerations as cost, a poor prognosis or low quality of life intersect with the “right to die”, people can literally be forced to die prematurely. When doctors and ethicists decide to play God — even with good intentions — that arrogance can be fatal.
Isn’t It Compassionate to Support a Person’s Right to Die?
When I first met Frank, I was puzzled. Frank was a terminally ill man who I was supposed to see for pain control but he didn’t seem to be in any physical pain at all. I talked to Frank’s wife Joan who tearfully confided to me that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.
Joan knew he was talking about shooting himself and even though she was horrified, she said she knew the right thing to say: “I will support any decision you make”. However, she later panicked and called the doctor to ask about pain control and that’s when I came in.
When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his slow death might be too hard on both of them, she was stunned and said that this never occurred to her. She loved Frank and she wanted to care for him until the end.
Frank and Joan then finally had an open and long overdue discussion about their sorrow and fears. When I last saw them, they were holding hands and smiling. Frank died peacefully — and naturally — a few weeks later with his wife at his side.
As a situation like this shows, political correctness can actually be lethal itself. Unfortunately, the public is given the message that “tolerance” is a paramount value. From abortion to euthanasia, we are constantly told that opposition to these practices is callous and inhumane. We are told that we cannot impose our own narrow morality on people who do not agree.
Sadly, in the case of assisted suicide/euthanasia, it’s this tolerance that really can make the life or death difference. I’ve worked with some suicidal people over the years and I have found that ambivalence over whether or not to kill oneself is virtually routine. For example, one terminally ill woman I cared for said that she would take an overdose when she left the hospital. She didn’t seem sad or depressed and was actually quite animated and smiling. As she put it, she was just tired of being tired and feared that the future “was just all downhill”.
However, when we talked about her feelings, the ramifications of her decision and what help was available, she slowly changed her mind. But when she excitedly told her friends about her new decision to live, these friends tracked me down to give me a real tongue-lashing about not supporting this woman’s original choice.
The ultimate irony of the push to spread legalized assisted suicide beyond Oregon’s terrible law is that at the same time we naturally see suicide as a tragedy to be prevented, we are pressed to accept that suicide is a compassionate choice for the terminally ill and even others.
A Time to Live, a Time to Die
When I worked as a hospice nurse years ago, our guiding principle was that we neither prolonged nor hastened dying. I totally supported this and I felt great satisfaction helping my patients and their relatives live as fully as possible until natural death. We nurses not only made sure that people were as physically comfortable as possible, we also helped with spiritual, emotional and practical concerns.
Unfortunately, the “right-to-die” enthusiasts have had way too much success in trying to convince both medical personnel and the public that choice in dying is really the ultimate principle. However, trying to micromanage death by such measures as withdrawal of basic treatment, terminal sedation, lethal overdoses, etc. profoundly changes the medical system, even for people who may recover or who may live with disabilities.
The “right to die” movement is really about despair rather than hope or true justice. People deserve the best in health care and that includes the right to both excellent care and a natural lifespan.
It’s just common sense.