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End of Life Issues Up Front and PersonalNovember 3, 2011
by M. J. Doherty, PhD.
"No other issue affects all of us like this one. When it goes well, we’re grateful forever. And when it does not go well, we never forget."
So said B. Lachlan Furrow, MD, , chair of the Massachusetts Expert Panel on End of Life Care (2009-2011 to a capacity crowd of medical personnel, social workers, and nursing students gathered at Regis, October 26, to consider end-of-life care. The session was part of the President’s Leadership Lecture Series on Health.
Weighing in on the topic - “End of Life Issues: Decision-Making, Cost and Ethical Dilemmas” - were Harvard Pilgrim CEO Eric Shultz; Boston College professor, Andrea Vicini, SJ, MD, PhD; and Dana Farber/ Brigham and Women’s Cancer Center nurse practitioner Daniel Gorman, NP-C, MSN, OCN, CRNI. For presenters and audience, the exploration was deeply personal.
What we all know and don’t want to talk about is the way we die – not just ourselves, but those we love. Fifty years ago most people died at home surrounded by loved ones; in a recent survey, seventy per cent (70 %) indicate that they want to die at home, but the same percentage actually die in institutions after aggressive, disease-modifying therapy traumatizes both the patient and the patient’s family.
“It is not true,” Furrow noted, that we disagree about excellence in end-of-life care. Everyone,” he continued, referring to doctors, nurses, insurers, ethicists, Catholic social teachers, and families, “agrees that from the diagnosis of a progressive, ultimately fateful condition, patients should be informed, patients should express their preferences, and preferences should be available and respected at every point of care. The terrifying thing for people is not knowing.”
Resistance to talking about dying surfaced politically in debates about health care reform when naysayers invented the idea of “death panels” to kill the section of the reform package that would have provided for patient-doctor conversations about quality of life and end of life care. In reality, there was nothing about “death panels” in the package, which simply stated that once every five years, if the patient wanted to, he could talk about his preferences for life-sustaining treatment with his physician, and costs connected to having this conversation should be covered. Instead, talk of death panels subverted the effort to fulfill a standard of good practice and a moral obligation of the physician, and that section of the health care reform package was dropped.
Over against this political malpractice, medical narrowness of focus, actuarial refusal of recognition, and social and family reluctance to see end-of-life realities as part of life and talk about them, how shall we all achieve clear-minded decision-making in the accompaniment of those who are ill and dying? How shall we remain ethically good, medically true and humanly loving as we do?
“Insurers can’t lead this effort to promote quality improvement; patients need to lead it, and the hospitalists are the crucial link,” said Dr. Furrow. Harvard-Pilgrim CEO Eric Schultz, who was grounded in understanding by his mother and two older sisters, all nurses, recognized that insurance companies can sometimes “mess up a patient-doctor relationship” and then explained how companies, which often get in the way, can actually help. “We all want dignity and compassion,” he said, “but it’s often too late before we know what our loved ones really want.” Harvard Pilgrim partners with Regis College on the Health Lecture Series, providing a community service to the public needing to know about trends in health care.
The United States spends trillions on health care, Schultz observed, with insurers spending about $25,000 to $30,000. on the last six months of life, the period Medicare allows for hospice care. The percentage of the total costs for palliative care has been stable in the last few years, which suggests that we are doing something right even as the costs themselves have grown higher. Great advances in technology, which is expensive, are asking us how better to spend as they create different dynamics. Payment reform will help shift the way health care is delivered. As Medicare goes, so goes insurance.
If anyone in the audience expected only black-or-white thinking as Father Andrea Vicini spoke about Roman Catholic approaches to the end of life, they were enlightened otherwise. He spoke precisely about the “yeses and nos” of Catholic ethical teaching established since the 1950s in papal documents: “Yes” to pain control, palliative care, accompaniment of the patient and patient decision-making; “no” to over-zealous treatment and to euthanasia and physician-assisted suicide. He pointed out the nuances, too, as pastors, doctors, and families all struggle with areas in which the knowing is not clear. He noted the summary in the 1992 Catholic catechism about discontinuing medical procedures that are “burdensome, dangerous, extraordinary, or disproportionate to the expected outcome” and Pope John Paul II’s “Gospel of Life” (1995) stating that treatments can be discontinued when they “impose an excessive burden on the patient and his family.”
From a Catholic perspective, end-of-life care and decision-making today are working to keep pace with difficult and delicate changes effected by advancing knowledge and technology. Taking an approach that integrates rules, norms, and principles with one that promotes relationality and responsibility through practice of the virtues, Vicini emphasized, illuminates what patients and families as well as caregivers face on a person-to-person basis.
The old model of aggressive treatment with only brink-of-death palliation is changing, Daniel Gorman said, to a new model in which palliative care for quality of life co-exists with disease-modifying treatment and helps modify it in face of the evidence of disease progression.
“Most adults would want to know if they had less than one year to live,” and an evolving, multi-dimensional focus on quality of life during that time includes psychological, social, and spiritual well-being along with the physical. People who are dying can be “conflicted between the care offered and care refused” because they think that they’re being unethical and giving up when they refuse care. Or family members can keep “urging one to keep trying” to live when the evidence is there that is time to begin letting go. Focusing on the quality of the end of life frees everyone up to be humanly connected and not so alone in this passage. One little axiom – “To cure sometimes, to relieve often, and to comfort always” – expresses the whole continuum of disease-modifying therapy, palliative care, and life closure.
A memory of my father flashed across my mind. He had a year’s warning, thoughtfully characterized his dying from lung cancer in late August, 1983, as a harvest sunset, and died with dignity at home as my mother and I and a visiting hospice nurse cared for him. Were there stresses as his physical condition changed from day to day and hour to hour? Most certainly. But there was also love, presence, strategic care, communion, and mental clarity to the very end, when he asked me to help straighten his body out in the bed so that he could go to God like a man. And he did.
Regis College is a Catholic co-educational community that prepares undergraduate, graduate and continuing education students for engagement and service in a changing world. In the School of Liberal Arts, Education and Social Sciences and the School of Nursing, Sciences and Health Professions, approximately 1,800 students are enrolled in 20 undergraduate majors; 30 minors; 10 interdisciplinary pathways toward professional success; and master’s degree programs in education, communication, health administration, regulatory and clinical research management, nursing, medical imaging, and a doctoral program in nursing practice. U.S. News and World Report ranks Regis in the top tier of universities with master’s programs in the North. The College is listed by the National Survey of Student Engagement (NSSE) among benchmarking colleges for the quality of educational experience. With a strategic graduate focus on health care, Regis College was recently named for the second time as a Center of Excellence in Nursing Education by the National League of Nursing. The College also provides accredited pre-school and kindergarten programs and a Life Long Learning Program (LLARC) for retired seniors.
Contact: M. J. Doherty, PhD (781-768-7015); email@example.com or Marjorie Arons-Barron (617-423-7770); firstname.lastname@example.org