Below, we share with all of you both the Times column and Dr. Lacey's essay. We hope that this blog entry encourages thorough investigation, open-minded questions, honest answers, and respectful discussion as more and more people in this country are going to face this gut-wrenching situation as America "grays." We also thank Dr. Lacey for generously agreeing to write something for our blog audience (and, in so doing, earn the distinction of being IWN's first guest columnist).
*IWN does not necessarily endorse nor refute any of the following commentary; the information and opinions presented therein represent merely a "sharing" of diverse points of view related to wellness. The same applies to everything heretofore published in this blog as well as all content to be published here in the future.
- Infinite Ways Network, Inc.
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Chorus of voices grows stronger for 'death with dignity'
Maintaining control of when and how they die is an important desire for those who wish to avoid burdening loved ones at the end of their lives.
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Dr. Debra Lacey
The right-to-die movement is often championed by
well-intentioned people who care passionately about the problematic ways in
which people die in this country. Like
many “rights” movements of the past 50 years, these right-to-die proponents
illuminate many of the injustices of the current system. But, unlike many
previous “rights” movements that created more just societies, this movement
will neither advance social justice nor the quality of human relationships.
Perhaps, in
an ideal world under ideal conditions, a right-to-die law might pose few
dangers to the majority of Americans. In
other words, if we lived in a country where high-quality, evidence-based,
health care services were consistently available to all regardless of personal
resources, then I might be less concerned about this proposed law. If we lived
in a country where accountability for medical care delivery meant
accountability to patient outcomes, and not accountability to investors and
stockholders, then I might be less concerned about this right-to-die movement.
But we don’t live in an ideal world, and given the world we live in, a
right-to-die law has potentially devastating unintended consequences for the
most vulnerable among us.
So, the
following frames my concerns about the right-to-die movement, especially in
regard to the specious arguments presented in the preceding article advocating
for a right-to-die law.
Specious
argument #1: People should have the right to end their own lives to avoid dying
“strapped to a bed or tangled up in wires and tubes.”
A number of federal laws already protect individuals from
receiving almost any kind of unwanted medical treatments or procedures.
Individuals who do not want to die in hospitals can be proactive to ensure this
doesn’t happen. This includes crafting advance directives, and more
importantly, having explicit conversations regularly with family members and health
care providers about goals and preferences for care, especially as people
become more frail or ill. Too often, individuals, their family members and
their health care providers avoid these conversations because they are
uncomfortable. This results in poor
communication, ambivalence, and confusion about goals of care, and results in the
likelihood of dying hooked to tubes and machines. A right-to-die law does
nothing to address this deficiency in the provision of health care in this
country. Other endeavors, such as improving health literacy and shared medical
decision making, have demonstrated greater effectiveness in matching
individuals’ goals and preferences for care with the actual and type of care
they receive.
Specious argument #2: People should have the right to end their lives
so they won’t die in pain and suffering.
First, let’s not
confuse “pain” and “suffering.” For decades now, bioethicists have
distinguished between these two phenomena.
Pain is primarily a physical experience. Suffering connotes a
multidimensional experience, perhaps
involving emotional, psychological, and spiritual domains. In other words, all physical pain connotes
suffering, but not all suffering involves physical pain.
So, what is
problematic about a law enabling people to avoid dying in physical pain?
Essentially, it’s the same argument as above; such a law is unnecessary. In
recent years, palliative care, e.g., pain management focused on alleviating suffering, and promoting comfort for people who are ill
and/or dying, has become more available and sophisticated in treating physical
pain and symptoms. Dying is almost never
a comfortable process, but in 2013, no one should have to fear – or experience
– unbearable physical pain when dying. If
people are suffering physically when they are dying, then they are receiving
bad care. Period.
When the
right-to-die law passed in Oregon many years ago, hospice and palliative care
providers mobilized to provide widespread quality comfort care to ensure that
patients would not choose to die because of intractable pain. As a result, the
Oregon experience has shown that when people are not suffering – physically or
otherwise – they almost never choose to end their lives prematurely. This was noted in the previous article. But Oregon is different than most other
states; its networked health care system is the exception, not the rule in most
of the rest of the country. Many experts
have noted that a right-to-die law in other states will not play out as it has
in Oregon. So, if research shows that
the great majority of people will live as long as they possibly can as long as
they are not suffering, why not advocate for more effective palliative care
across the country instead of fighting for a law that will not be utilized by
most Americans if they are receiving quality care?
Next, If it is already possible to alleviate significant
physical pain in people who are dying, then what kind of suffering should
require medical providers to enable an individual to end his or her life
prematurely? Per the story of the man who shot himself, the writer referred to
the man’s “full depth of desperation.”
Apparently, this man’s suffering encompassed far more than his physical
symptoms. Perhaps his suffering was less about his physical pain and more about
his psychic pain, i.e. his refusal to become physically dependent on people who
loved him, and people who wanted to help him.
So, should medical care providers be required to enable suicide for
people, who are not suffering physically, but who are suffering because they
are emotionally desperate about losing control of their physical selves as they
are dying? This leads to the problematic right-to-die arguments for not
burdening families and control issues:
Specious
argument #3: People should have the
right to end their lives so they won’t have to burden loved ones with their
care, and similarly, people who are dying should have the right to spare family
members from “enduring the pain of watching loved ones fade.”
Specious
argument #4: People should have the right to end their lives when they choose
because having control over one’s life should extend to controlling the timing
of one’s death.
Part of my
frustration with right-to-die proponents concerns the short-sightedness of
their vision. As mentioned above, we do not live in an ideal world. We live in
a country where the provision of medical care is very much shaped by
reimbursement structures, and the rules of capitalistic enterprises. So, let’s take a second to move from what is
happening today and consider what could easily be happening 20 years from now
if a right-to-die law is passed.
First, it won’t take long for insurers to
realize that it’s far more profitable for their shareholders if
dying patients
take a pill and end their lives rather than having the insurance company pay
for all the associated costs of dying – doctors, nurses, social workers, therapies,
pain medications and treatments, supplies, etc. How long will it take for insurance companies
to reshape policies and practices to make premature dying a much more
attractive option? Also, as this country moves away from fee-for-service care,
and more toward managed care, how long will it take for medical providers to
realize that in many instances, a premature death may be more cost-effective
than the resources needed to support a dying person for weeks or months on end?
Furthermore, if people can be encouraged, subtly or otherwise, to end their
lives prematurely, then why bother developing greater expertise in managing
pain and associated symptoms for those nearing death?
Imagine this country in 20 or 30 years, with Baby Boomers
swelling the ranks of the oldest old. Wouldn’t it be so much easier to reshape
public policy to encourage these elderly, ailing individuals to end their lives
early and not burden their families and society? How many years will it take
for the right to die become the obligation
to die? How easy it is to envision in the not-too-distant future, scenarios
in which messages are consistently conveyed to 90-year-old mothers and fathers
that being a “good parent” means a swift exit, and not burdening adult children
with days and weeks of potentially exhausting care. It’s not hard to imagine
aged, ailing parents, especially those whose families already are stretched
financially and emotionally to be particularly susceptible to such messages.
I wonder if proponents of the right-to-die movement, often
articulate, educated individuals who have experienced a great deal of autonomy
in their lives, think about how a
right-to-die law will impact those who are not educated, who are not literate,
and whose lifetimes of experiences with social institutions – educational,
economic, legal and political – have not been particularly positive. I don’t see a demand for right-to-die laws
among this country’s poor. Undoubtedly, they know that such a law does not bode
well for their future in a society where they already are referred to as
burdens.
But enough
about the future. It is just as
troubling in the present to consider how a right-to-die law will impact human
relationships. As a former hospice
social worker, and as a family member who has been at the side of loved ones
who have died, I worry about how a pervasive acceptance of a right to die denigrates
the obligations of humanity and human relationships.
Having personally cared
for loved ones who are dying, I know how hard it can be – for everyone
involved. And yet, this is part of what it means to be human.
Several
years ago, my mother’s companion was dying. After a year of careening from one
health crisis to another as his body deteriorated, he finally was home with hospice.
And all that was left was waiting. And waiting. By the fifth day in his dying
process, his adult son who lived up north, was becoming more distressed. In a
quiet moment, I said, “How are you doing?” and this mature, responsible son
began crying. He said he was crying because he felt guilty that he just wanted
it to be over. He felt guilty because as much as he loved his father, he also
had a job and a family, and he needed and wanted to get back to them. He was crying because he had to come to terms
with the fact that he was the kind of person who could both love his father,
and, yet, could want him to die, in part, so he could get back to his own needs
and responsibilities. He was awash in shame. Yet, I am certain his experience of this most profound
shame made him a better person. By being forced to face himself in the worst of
times, he had to acknowledge his own failings and his own humanity. I have no
doubt that because of this experience,
he is more compassionate now than he was before. He understands, now, so
personally and so deeply how people can experience altruism and selfishness
simultaneously, and still be worthy of love, respect, and admiration. Had his father ended his life five days
earlier, his son never would have had this profound insight.
I think versions of
this story happen over and over and over again in families caring for a loved
one who is dying. But with a right-to-die law, such experiences will happen
less and less frequently as pressure is exerted on individuals and systems to
end lives prematurely. Dying, in
particular, the inability to control exactly when a life ends, is a part of the
human experience, as unpleasant and as distressing it may be at times. But it also allows us to honor - in the most
powerful way that we can – those who have loved us, sacrificed for us, and made
life possible for us. It allows the survivors to understand what it means to be
human in a way that no other experience allows.
Right-to-die proponents believe their efforts will enhance human dignity, but from my
perspective, such a law ultimately, will dehumanize all of us.
