ALBUQUERQUE, N.M. — He asks if it is OK that he wear overalls to meet me. Norbert Schueller is driving in from his country home outside Belen. He’s 74. He uses a cane, has trouble getting up and down from sitting. He is dying, or so the doctors tell him.
Overalls are more than OK.
Schueller has lived a good, long life, one that has taken him from the farmlands of North Dakota to the sun-kissed shores of California.
Since 2002, he has lived on the rural edge of Belen with his four dogs. He’s been a monk, a Navy seaman, a law student, an unsuccessful candidate for the Valencia County Commission and a self-professed rebel back in the days he no longer wishes to dwell upon.
He smoked until 2007.
Now, he’s an ailing man standing in the dying light, preparing for throat cancer to take its toll and hoping to live out his last days with as much comfort and dignity as possible.
“I’m going to die, but no one gets out of this world alive,” said Schueller, whose thoughts are as clear as this September morning. “We normally don’t know our time frame, but because I do I can put my spiritual and worldly affairs in order and not leave as big a mess behind.”
Schueller, a devout Catholic, does not believe in physician-assisted suicide – dying, he says, is God’s decision – but he does believe he has the right to decide how best to spend his last months here. We are meeting because of his concerns that he is not receiving the palliative care he wants rather than the rigorous, invasive and ultimately futile treatment that could prolong his life at the cost of the quality of that life.
“If the end result is the same, and that is a death sentence,” he said, “what is the point of going through extreme measures?”
Schueller, a two-time survivor of cancer, said he was diagnosed with terminal cancer of the throat in August.
“I figured I had two ways of looking at this: Either the third time is the charm or three strikes and I’m out,” he said. “But when the doctor told me I had only a 1 or 2 percent chance of survival and a year to live, I was thinking it was more like three strikes.”
Doctors gave him a proposed plan of attack: Surgery that would split his jaw to extricate the large tumor at the base of his tongue, leaving him unable to eat by mouth and unable to speak, plus weeks of debilitating chemotherapy and prescriptions for painkillers.
Schueller wasn’t interested.
“Who wants to live like that?” he said. “I don’t want a feeding tube. And I need to speak. Even when I say my prayers, I may be silently saying them but I am speaking them.”
He wrote a letter Sept. 4 to the director of the cancer center that he is a patient of and made a list of his concerns: Why chemotherapy when the drugs will not cure the cancer? Why addictive, mind-numbing painkillers when ibuprofen would suffice? Why had the medical process become as complicated and complex as the legal process?
“It seems to me that when the medical circumstances indicate imminent death, palliative care means making the patient comfortable and reducing pain since a cure cannot be effectuated,” he wrote.
He is right. Palliative care, one of the fastest growing trends in the health field, provides patients with pain relief, manages symptoms and stress. It focuses on the illness, not just the disease, and the family, not just the patient.
A team of doctors, nurses, social workers and spiritual advisers works with the patient and the family on the type of care they want. The end result, advocates say, is less suffering, fewer days in the hospital, lower costs and, in some cases, a longer life.
“It is not hospice but helping you direct your own care, helping you maintain a high quality of life,” said Sandra Adondakis, New Mexico government relations director for the American Cancer Society Cancer Action Network.
Hospice care is also palliative but typically more intensified because the condition of the patient is more dire and the life expectancy far shorter.
New Mexico scores low in terms of access to palliative care, according to the Cancer Action Network’s “How Do You Measure Up?” New Mexico also earned a “C” grade from the National Palliative Care Research Center because less than half of all hospitals in the state with 50 beds or more offer a palliative care program.
That’s attributable to a shortage of providers in the rural areas of the state. In Albuquerque, palliative care is available at the University of New Mexico Hospital, Presbyterian and most Lovelace hospitals and the Raymond G. Murphy VA Medical Center.
Still, there is good news for New Mexico. Beginning April 2016, palliative care will be part of the training for medical students attending the University of New Mexico.
Efforts are also under way to introduce state legislation that would seek to improve palliative care access, awareness and education, Adondakis said.
As for Schueller, his will and advanced directives are prepared. He’s made arrangements for his dogs when the time comes. He’s made peace with his fate and, he hopes, is nearing an accord with his doctors. So he will wait, he will live until whatever comes next.
“God is the only one who makes the determination,” he said. “And sometimes he gives us advance warning.”
UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, email@example.com or follow her on Twitter @jolinegkg. Go to ABQjournal.com/letters/new to submit a letter to the editor.