Treatment Goal #5: Humane and Cost-Effective End-of-Life Care

Eventually, no matter how much prevention and treatment of illness we practice, everyone will die. Expensive technologies that may save lives and restore health in other circumstances frequently increase suffering and prolong our final days. As a society, we expend huge sums of money that do not improve care or quality of life but that frequently cause greater suffering for patients and their families. Physicians, especially those who treat the terminally ill, must discuss these sometimes-painful issues with patients and their families, develop a plan together, then follow the patients' wishes as the end comes.

Texans must ensure that our spending on health care resources during patients' final days, weeks, and months matches their individual desires.

As our population ages, so too does the number of individuals with chronic illness. Approximately 132 million Americans today live with chronic illness. That number should jump to more than 170 million in the next 25 years. Since nearly all patients die during the course of a chronic illness, death rarely takes us by surprise and preparation is possible.

Until the turn of the 20th century, almost all Americans died at home. Today, 98 percent of Medicare patients spend at least some time in a hospital during the last year of life, and 75 percent die in a hospital or nursing home. But about 70 percent of patients say they wish to die - like their great-great-grandparents - at home. We have an immense gap between patient preferences and reality.

There is significant data showing that improving care at the end of life is quite possible and decreases costs. Of the $247 billion Medicare spent in 2002, more than one-quarter - $64 billion - came during the last 12 months of patients' lives. More than half of that amount - $35 billion - came during the final two months. Counting all funding sources, we spend about 22 percent of our health care dollars in the final year of life; that's a total of $330 billion for the 2.4 million Americans who died in 2002.

The medical literature is not conclusive as to the potential for significant cost savings at the end of life. Studies do show three- to six-fold variations in spending among the best hospitals in the country in the last six months of life, independent of severity of illness or outcome. And we know, conclusively, that it costs significantly less to die with appropriate hospice care at home, in a nursing home, or in a standard hospital bed than in the intensive care unit.

It is a Texas physician's responsibility to consult an ethics committee if a patient or family member asks for life-sustaining treatment that the physician does not believe will medically benefit the patient. In some cases, even if the ethics committee agrees with the physician that the requested care is futile, state law requires the physician and hospital to provide care for 10 days while attempting to find another physician or institution that will provide the treatment requested. It is undoubtedly in everyone's best interests to avoid such painful conflicts.

To improve the quality of Texans' final days, TMA recommends:

  1. Improving communications about the goals and likely outcomes of medical care. Building off of the success of the Texas Advance Directives Act, we should insist that physicians, patients, and their families incorporate advance care plans into standard chronic patient care and acute crisis care. Physicians, patients, and their families should discuss an advance care plan every time a patient is admitted to an intensive care unit by choice, i.e., after major surgery.

  2. Requiring medical schools, with appropriate funding from the legislature, to increase training in clinical ethics, palliative care, and cultural diversity. Dying is a universal human process, but we do not effectively train our future doctors how to deal with death.

  3. Collecting better outcome and discharge data from the intensive care unit, hospital, and nursing home. The state and our academic medical centers should collect this comprehensive data across Texas so that we can better understand the unique circumstances in which our physicians provide end-of-life care to their patients.

  4. Creating a flexible regulatory environment that facilitates creativity and cooperation in end-of-life care services across diverse communities. We should develop palliative care consultation services across Texas and provide financial support where needed - such as in rural communities or those with high numbers of medically indigent persons.

Texans must do everything possible to prevent needless pain.

Studies show that many terminally ill patients suffer moderate to severe pain in the final week or two of hospitalization and most have serious pain in the last three days of life. Surveys of those who know they are about to die show that their top request is to spend their final days with their families with their pain and other symptoms under control.

Better clinical ethics, palliative care, and hospice can reduce pain, help families, and relieve human suffering.

To reduce suffering, TMA recommends:

  1. Removing legal barriers to ethical, effective pain management at the end of life. TMA opposes any move that would endanger or prevent appropriate and aggressive pain management practices.