Recently, the Los Angeles Times published a piece that looked at the question of "right-to-die." We asked Dr. Debra Lacey, faculty member at Barry University's School of Social Work and expert on geriatric social work, to share with our blog readers her thoughts on that column in the Los Angeles Times and her thoughts on "right-to-die."
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.
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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.
urlink for entire "right-to-die" column in LA Times
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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.
