Warren Hauser is dying. Should the Supreme Court decide that terminally ill Americans have a constitutional right to commit suicide with a doctor’s help, he would qualify. Emphysema and valvular heart disease have left him debilitated and physically dependent. His physician and our hospice team work together to manage his chest pains and episodes of breathlessness. On good days he can walk a bit with a walker, baby-sit his granddaughter or take a short drive, bringing his oxygen canister along. On bad days he is bedridden, barely able to get enough breath.
Recently I asked Warren whether he had ever thought about suicide. He said he had when he first became seriously ill, but the idea hadn’t crossed his mind in months, since he no longer worries about suffering or becoming a burden to his wife and family. He intends to let nature take its course; the next pneumonia or heart attack will likely be his last. “No more hospitals,” he told me, adding with a wry smile, “The ambulance trip alone is enough to kill you.” But he admitted, “If I had no one to look after me or I had to go to a nursing home, it might be a different story…”
During the years I’ve been a hospice doctor, I have learned from my patients that when they are fairly comfortable and are confident they will not be abandoned, dying can be a rich and meaningful time of life. That’s when families have a chance to say things to each other, like, forgive me, I forgive you, thank you, I love you and – finally – goodbye. People can retell and record their stories, preserving the life they knew for those they leave behind. And they can reflect upon the meaning of their lives, with its satisfactions and frustrations, and, if inclined, explore the meaning of transcendence.
Today fewer than one in five Americans are as fortunate as Warren. Outmoded habits of medical practice and outdated Medicare and insurance regulations effectively exclude most patients dying of advanced heart or lung disease, as well as those with Alzheimer’s or AIDS, from receiving the intensive level of end-of-life care that a hospice represents. People are left to choose between hospital-based treatment they may no longer want and going without.
The fear of unrelievable suffering, poverty and dependence fuels the drive to legalize physician-assisted suicide. The crisis is real. Studies document that pain among the terminal ill is widespread and undertreated, even within our most prestigious medical centers. Making matters worse, our system financially punishes people for being seriously ill and not dying quickly enough. Illness threatens a family’s source of income, medical treatment threatens its savings. All this can make assisted suicide seem a reasonable escape from inevitable agony.
But approaching the end of life through the lens of assisted suicide is like looking through the wrong end of binoculars; the view is narrowed and distorted. Dying does not have to be horrifying. Pain can always be alleviated. Relief from physical distress is the first priority, but it is not the ultimate goal. Beyond morphine and skilled medical care, it is possible to attend the dying in ways that honor and even celebrate their lives. People can be sat with, in quiet conversation or in silence. They can be sung to and their skin gently oiled. They can be prayed with. Care that is tender and loving is exemplified by our country’s best hospice programs, where it has proven to be effective and affordable. We should settle for no less, whether people are being treated at home, in nursing homes or in hospitals.
We Americans must overcome our squeamish resistance to talking about death and the messy aspects of illness. We must also move beyond our myopic inability to imagine dying as anything other than isolated, agonizing and bleak. It’s not necessary to romanticize death to recognize that people can retain the capacity to grow, inwardly and together, through this last stage of life.
As a society we can choose a higher road on which to care for our dying. Common ground is available above the increasingly divisive debate. To reach it we must raise standards of clinical practice, reform medical education and adopt health policy that expands access to comprehensive palliative care without pauperizing families in the process. Yet, we needn’t wait for the courts, Congress or state legislatures to get started. As family members, friends and neighbors, each of us can take responsibility to see that people are treated in a way that allows them to feel wanted and worthy during their terminal frailty and physical dependence.
As a nation, we are right to finally confront the stark reality of needless suffering among the dying. The present adversarial debate over assisted suicide is diverting attention from the problem’s roots and absorbing the energy and creativity of those most passionate for change. We can provide solace and preserve dignity and human potential through the very end of life. Instead of arguing whether assisted suicide should be legal or illegal, let’s do what is needed to make it irrelevant.
The writer is president of the American Academy of Hospice and Palliative Medicine.
(Reprinted with permission by Dying Well)
The Washington Post
