How Do We Talk About Quality of Life?

Ken Covinsky at GeriPal reminds us, by highlighting a new study, that a patient's diagnosis does not equal their quality of life. He writes:

Perhaps the most important issue is that if you want to know about a patient's quality of life, the best way to do so may be to just ask the patient to describe their quality of life. It seems that adding this single question to most clinical studies would be very informative. There is little reason for not supplementng the excellent health-related quality of life scales that have been developed with this informative global question.

The distinction between health status and quality of life was very nicely illustrated in a studypublished in the May issue of the Journal of the American Geriatrics Society. This study, led by Rachel Solomon and Terri Fried followed 185 elders with serious and progressive chronic illness. The patients had one of a number of conditions associated with chronically declining health---either cancer, CHF, or COPD. Patients were asked about their quality of life every 4 months. The findings are instructive:

• In the interview before death (usually in the last 4 months) 46% of patients rated their quality of life as either good or best possible.
• Between the pentultimate and final interview between dealth, 21% of patients reported improved quality of life and 39% reported no change. So, not only does quality of life not always decline as health worsens, sometimes it actually improves.
• Quality of life is strongly innfluenced by many nonmedical factors. For example, one of the strongest predictors of better quality of life was growing closer to one's church

To those of us who volunteer for hospice, we know that "quality of life" often includes far more areas of the patient's life than just their physical health. Finances, environment, food access, communication with family, friends, and medical staff, status of their estate will and possessions, spiritual comfort; all these issues and more can contribute to pain when they are outside the patient's control or expectations.

Cicely Saunders, the founder of the modern hospice program, called this idea of pain, something broader than just physical suffering, "total pain," as noted in an article on hospice history by David Clark:

There can be little doubt that when Cicely Saunders first used the term “total pain” in the early 1960s, she was in the process of bequeathing to medicine and health care a concept of enduring clinical and conceptual interest. In recent years we have gained a clear picture of the early evolution of the notion of total pain (Clark, 1999). Certainly, it emerged from Cicely Saunders’ unique experience as nurse, social worker, and physician—the remarkable multidisciplinary platform from which she launched the hospice movement. It also reflected her willingness to acknowledge the spiritual suffering of the patient and to see this in relation to physical problems. Crucially, total pain was tied to a sense of narrative and biography, emphasizing the importance of listening to the patient’s story and of understanding the experience of suffering in a multifaceted way. This was an approach that saw pain as a key to unlocking other problems and as something requiring multiple interventions for its resolution. Thus was formulated the idea of total pain as incorporating physical, psychological, social, emotional, and spiritual elements (Saunders, 1964).

The problem with the term "quality of life" is that it's become highly politicized in the past few decades, since medical advancements changed the definition of death with the new ability to sustain heart and lung function almost indefinitely. (William Colby has a great discussion of the term, it's many meanings and its importance in his 2006 book, Unplugged: Reclaiming Our Right to Die in America. See pages 126 - 139.) In the cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo, the "quality of life" of these individual women was contested by either medical staff or family members. Without the ability to communicate their medical decisions, these women were left to be "managed" by prevailing forces, in all three cases after a protracted legal battle. Because the standard, "I wouldn't want to live that way," is one that various non-terminal patients hear, particularly those with physical disabilities, the discussion of quality of life became muddied with conversations about patient autonomy, futile care, disability rights, and discrimination.

Religious leaders and "pro-life" groups have worked hard, often with the help of disability rights advocates (see the January 2010 special "assisted suicide" issue of Disability and Health Journal), to present the notion that quality of life is either unimportant when society considers treatment for the dying, or that we humans are unable to judge what only God can. In this way, pain management can then be acceptably addressed by some religious practitioners without moving into the politicized and evolving concept of "quality of life." There are endless theological justifications for refuting the will of a patient or their family when facing pain, including the concept of redemptive suffering (as espoused in Ethical and Religious Directive #61of the US Conference of Catholic Bishops, used to govern 624 hospitals in the US, which states, "Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.") God doesn't give us more than we can handle, therefor if we are in un-relievable pain, we can handle it. Suffering brings us closer to God by helping us to relate to Christ's suffering on the cross. It is through relation to Christ's pain that we most-often achieve salvation. To many of us, this can be a paradoxical concept; yet it undergirds the "mission" of the Catholic Church and "pro-life" activism against abortion, instruction in STD or AIDs prevention, fertility treatment for lesbian women, and removal from artificial nutrition and hydration at the end of life.

But Colby makes a strong case for continued public debate about "quality of life," one that focuses on the actual state of patients, medical procedures, patient informed consent, and various factors beyond but including physical pain. He writes:

The problem with avoiding the topic of quality of life is this: the main issue in the Schiavo case was Terri Schiavo's quality of life. Though not usually cast that way, that's what the whole debate of the case was about. More specifically, the issue is whether a medical intervention can restore function, relieve suffering, and provide sufficient quality of life so that the patient (or person speaking on her behalf) chooses to accept that medical treatment. Indeed...quality of life is what the serious public debate should be about.

Various attempts have been made to define "quality of life" in a meaningful and functional way, namely by presidents' councils on medical ethics. Yet the controversy -- that is the mediated public debate, often devoid of practical considerations -- on quality of life, particularly in such cases as the 30,000 persistent vegetative state patients who are in the US at any given time or surrounding issues of assisted suicide and organ donation, will most likely continue until society's understanding of medical capabilities, futile care, law, and the dying process catch up. I'm hopeful that the advancing assisted suicide movement, the glut of Baby Boomers soon to enter the end of life phase, advocacy for patient autonomy and rights, and our crumbling and inadequate medical system will all contribute to greater public knowledge and discussion of quality of life.